Advance directives, living wills, and other practical matters
end-of-life issues and documents, elder law, and estate planning)
• Getting your affairs in order
• Advance directives, POLSTs, living wills, health care proxies Stating your wishes about your end-of-life care for when you can't speak for yourself)
• Advance directive end-of-life treatment (for patients with dementia)
See also Conversations about dying
• Paperwork for expressing your end-of-life preferences (for emergency medical treatment, no medical treatment, or somewhere in between)
• Options for life-sustaining treatments
Choices re CPR, DNR, DNI, artificial ventilation, intubation, etc.
• Documents and information to have available in an easy-to-find place
• Documents you need to protect your own and your survivors' rights and wishes
• End of life financial planning
• Wills, trusts, legacies, estates, and inheritance
(estate planning -- your wishes about your property and material wealth)
---Wills
---Estate planning
---Living trusts, revocable trusts, and special needs trusts
---Power of attorney, conservatorships, and guardianships
---Your literary estate
---Your digital estate (including passwords)
---Your "professional will" (who takes over your business or private practice)
---Settling an estate (getting through probate, etc.)
---What to do after somone dies (a checklist)
---Inheritance: Common questions and problems
---Inheritance court cases
---Books about inheritance
• Financial Planning 101
• Organizations fighting for elder rights and pension rights
• Eldercare planning resources
• Elder law, elder protection, and pension rights
• Preventing elder abuse, scams, and senior guardianship problems
• End-of-life care and planning for pets
SEE ALSO
• Charity, philanthropy, and volunteering (giving wisely and doing good)
• Conversations about dying
• Covid 19: where to get the information you need
• Donating your body or body parts
• Long-term care and long-term care insurance
• Medicare, Medicaid, and health insurance
• Retirement 101
• Social Security, Veterans Benefits, Pensions, and Annuities
DOCUMENTS YOU NEED TO PROTECT
YOUR OWN AND YOUR SURVIVORS' RIGHTS AND WISHES
These documents are not just for old or sick people. The big court cases about sustaining the lives of people in a coma have been about young women in their twenties. So think about these issues! After an overview of the types of documents you need are links to articles that provide more detail and cover more issues.
DOCUMENTS GOVERNING YOUR MEDICAL AND HEALTH CARE (OVERVIEW)
An advance directive (an advance medical directive or an advance health care directive) a document naming your health care proxy (aka durable health care power of attorney), the person you appoint to make medical treatment decisions for you if you become unable to make them for yourself--and stating what medical care you want if you are unable to speak for yourself. Laws vary from state to state, so you should prepare these documents under the guidance of a local attorney.
We'll speak first about the ADVANCE DIRECTIVE and then about the POLST (AKA MOLST, POST, MOST, ETC.) and the DIFFERENCE BETWEEN THE TWO.
The two main parts of an advance directive are a living will (in which you spell out your medical wishes) and a health care proxy (or durable health care power of attorney) in which you designate who should speak for you if you can't speak for yourself. Of these the health care proxy (or durable health care power of attorney) is probably most important: It allows you to designate a person you want your medical team to work with (also known as a “surrogate”) if you can’t speak for yourself. You should also appoint one or two backups, and you must check to be sure the people you want to designate are willing to undertake that responsibility.
The advance directive, then, comes in two parts:
· A HEALTH CARE PROXY (or DURABLE HEALTH CARE POWER OF ATTORNEY), a legal document in which you name someone (besides the doctor and/or hospital) to be your advocate and make decisions about your health care should you become unable to do so. (This is separate from a financial power of attorney.) It is probably a good idea to have one of these even if you don't expect to die soon, because if you are involved in an accident and aren't in a position to make decisions, you want a person you choose to be able to make them for you. Don't choose someone kind and gentle; choose someone smart and able to speak strongly to authorities. See also What is a medical power of attorney?
You can have both — a health care proxy naming a person to make the decisions and a living will to help guide that person in making the decisions. It is also important to discuss the feelings, beliefs, and reasoning behind your preferences while you are in a position to do so, as what you say may be more morally and emotionally persuasive than what you provide in writing.
· A LIVING WILL, that part of an advance directive in which you spell out the kind of medical and health care and life-sustaining treatments you want or don't want when you can no longer care for yourself. (Should they shut off the ventilator when all hope seems lost, or should they do everything possible to save you, including tube feeding you as long as possible, no matter the cost? Generally such decisions are context-specific: You might want to be on a ventilator if doing so would return you to health, but not if it wouldn't. Under what circumstances would you want chemotherapy, blood transfusions, etc. Under what circumstances are you willing to donate your organs?) For more information, go to the U.S. Living Will Registry (for registering your living will, advance directive, organ donor information, and other important information). For a contrarian view, read Charlotte Allen's piece (Back Off! I'm Not Dead Yet). You do not name another person to make medical decisions for you in a living will. For that you need to prepare a health care proxy or durable health care power of attorney. (Don't confuse living wills with living trusts, described under legal and financial documents.)
· The POLST (MOLST, ETC.), on the other hand, is a one- or two-page summary of your medical wishes in the form of a medical order. The MOLST and POLST (and equivalent documents) serves as medical orders from your doctor to let first responders who arrive at the scene of an emergency know what to do (or not do). They state what medical treatments you want or do not want in a medical crisis. You cannot identify a surrogate in this form; to do that you need an advance directive. States vary in which they favor. These orders provide health care treatment instructions for treatment of seriously ill adults who may be nearing death.
MOLST stands for "medical orders for life-sustaining treatment"; its cousin, POLST, is a “physician’s orders for life sustaining treatment.” The MOLST or POLST may state the patient's preferences for, against, and about CPR, medical interventions, antibiotics, and artificially administered nutrition and hydration. You (the patient) and your physician fill out the MOLST and your physician signs it, too. A relatively new document, the POLST is a way to translate your wishes, a living will, or an oral advance directive into medical/physician's orders that must be followed by emergency personnel and health care providers. The POLST may state a patient's preferences for, against, and about CPR, medical interventions, antibiotics, and artificially administered nutrition and hydration. It is an important way to instruct emergency personnel about what actions to take (or not to take) while you are still at home -- a way to prevent unwanted treatment. See POLST, about what's available in various states, and What is a POLST and Do I Need One? (Angela Morrow, RN, About.com 3-1-10), and After The Cranberries And Pie, Let's Talk About Death (Nancy Shute, News from NPR, NCPR, 11-28-13). "Because it's signed by a doctor or other provider, a POLST has teeth. It overrides the legal obligation of an EMT or a hospital to provide CPR and other emergency care that for old and sick people can lead to a long, miserable hospital stay. 'It's not for healthy people,' says Dr. Susan Tolle, director of the Center for Ethics in Health Care at Oregon Health Science University. Instead, it's for someone who is aware that they may soon die."
The MOLST, or POLST (and variations on those acronyms), is more comprehensive than documents called DNR (do not resuscitate) or in some states DNAR (do not attempt resuscitation), AND allow you to request a natural death rather than a medical "rescue." You may decide at some point to have a do not resuscitate (DNR) order — a request not to have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing. If not given such instructions, hospital staff will try to help any patient whose heart has stopped or who has stopped breathing. If you (or your health care proxy) tell your doctor you don't want to be resuscitated, your doctor will put a DNR order in your medical chart. In some states, you need to wear a DNR bracelet in order for emergency care personnel to honor your wishes. Post your MOLST or POLST forms on your refrigerator. That's the first place health care workers will look for such a document. (No magnetic fridge door? Tape directions on fridge about where to find your signed forms.)
• State-by-state POLST/MOLST forms (Everplans provides links) You will see that there are several variations on a theme:
POLST: Physicians order for life sustaining treatment
MOLST Medical order for life sustaining treatment (not just doctors sign)
COLST: Clinician Orders for Life Sustaining Treatment
MOST: Medical Orders for Scope of Treatment
POST: Physician Orders for Scope of Treatment
TPOPP: Transportable Physician Orders for Patient Preferences.
If the document for your state doesn't open, do a search for the term for your state.
• State-by-state advance directive forms and info (CaringInfo, National Hospice & Palliative Care Organization)
• State-by-state advance directive forms (Everplans links)
LEGAL AND FINANCIAL DOCUMENTS:
• Your last will and testament, which is legally binding, details how you want to distribute your earthly goods — your valuables, what you want your survivors to have. You should also prepare:
• A durable financial power of attorney, appointing someone to make financial decisions on your behalf until your death (should you become unable to do so). But note: Finding Out Your Power of Attorney Is Powerless (Paula Span, NY Times, 5-6-16) Some financial institutions are unwilling to honor valid powers of attorney and require that an account holder sign their own power-of-attorney form.
• You might want to explore the possibilities of a living trust, which gives a designated person (a trustee) authority to hold, manage, and distribute property for you while you are alive and to distribute it when you die. For this and the other legal and financial arrangements, you need sound advice from an expert. See Build a Trusted Team to Manage Your Finances ( Jane Bryant Quinn, AARP Bulletin, Sept. 2016).
PERSONAL WISHES AND LEGACY DOCUMENTS:
• A letter of intent (which is not legally binding) can spell out the things that would make you happy should you experience a disabling health event, so that you can't care for yourself and might not be able to express yourself. (Kristie Miller's Letter of Intent is a great example.)
• An ethical will (a legacy letter, a life letter — I haven't seen an ideal name for this kind of document) tells your survivors what you want them to know. This, too, is not legally binding. This document (or videotape or audiotape) conveys expressions of love, blessings, and regret; it conveys treasured personal and family stories and life lessons; it articulates what you value and want to be remembered for, what you want your children and grandchildren never to forget. You may convey what you want your survivors to know in print, on an audio or video recording, as a one-page letter, as collection of messages, a story, a memoir, genealogical records, a family history, a series of recorded interviews — the possibilities are endless. These needn't be fancy or ambitious, but they can be, and you can arrange for someone to help you through a writers organization. The Financial Planning Association reports from survey results that these "non-financial leave-behinds" are ten times more important to most people than their parents' financial legacy.
• We will all leave a legacy - whether we like it or not (Lyndsay Green, Globe and Mail, 1-12-19) 'We are leaving a legacy – like it or not. So, we would be wise to pay attention to what that legacy will look like....But, if we’re not careful we may hear the call “time’s up” before we’ve paid attention to the implications of our end.' It needn't be money, or something money can buy. Donating one's organs can affect (even save) many lives. "What if we were told our life was to abruptly end? Have we been living a life aligned with our values? Would our time on earth have made a difference to anyone or anything? What would we be leaving behind for those we love? What responsibilities would be left dangling? What story would people tell about us after we’re gone? Have we been taking full advantage of this one precious life, both for ourselves and for others? What would be our legacy?"
• Document your medical history and the medical histories of all the family members that you can document. This information may be as important three generations down the line as it is now. At some point we'll find it easy to leave behind a sample of DNA, too.
• And don't forget to gather and pass along favorite family recipes. Food is such an important part of our legacy of memories.
***FIVE WISHES. Put this Aging with Dignity document and task at the top of your to-do list. Expressing your Five Wishes lets your family and doctors know:
* Who you want to make health care decisions for you when you can't make them.
* The kind of medical treatment you want or don't want.
* How comfortable you want to be.
* How you want people to treat you.
* What you want your loved ones to know.
Kristie Miller's Letter of Intent does a great job telling her family what she would want should she decline.
Getting Your Affairs in Order
What to do if you are dying (or might be)
• Are you prepared to die? I am, and that’s the right way to live. (Steven Petrow, Washington Post, 9-25-2020) "That question — “Where are we now?” — resonated for me as the pandemic spread unabated. Who knows when the bell will toll for thee?... So many questions. Who do I want to act as my medical power of attorney? Why do I need a living will? Do I want to be cremated or not? What songs do I want played at my funeral? For those who need help getting started, here are some resources:
---Lantern is a free website with checklists and articles about end-of-life preparations.
---Everplans is a subscription-based online product for creating, organizing and storing your end-of-life plan.
---The Conversation Project is a website focused on helping people talk about their wishes for end-of-life care.
• Death with Dignity Law (state by state)
---Get Your Life File Checklist
---Life File: Will and Estate Planning
---Do I need a will or an estate plan?
---What should be included in a will
---What should not be included in a will
---What happens if I don't have a will or estate plan?
---How do I get started making a will or estate plan?
"Making your own will often does not require an attorney. There are online resources like FreeWill that will help you create a will and make plans for charitable giving. The ACLU also has a guide to writing a will without an attorney and a printable PDF estate organizer.
• Want control at the end of your life? Here’s what you need (Bonnie Lawrence, Family Caregiver Alliance, NY Times, 4-10-15) You'll find links to information about these resources elsewhere on this page (see Contents at top of page).
---Advance Health Care Directive (AHCD)
---Physicians Orders for Life Sustaining Treatment (POLST or MOLST etc., replacing DNR)
---Durable Power of Attorney for Finances
---Will
---Trusts--Includes a good list of various types of trusts and why you might want them.
---Final Arrangements
---Beneficiary Forms
---Where to Find My Important Papers
---Passwords.
• Another important checklist for estate planning:
---A will
---A living will or medical power of attorney
---An assignment of power of attorney
---In some cases a trust (check with your attorney)
---A list of all your assets and where they are
---A discussion with your attorney about who you want to inherit various assets
---Who you want handling your affairs if you are unable to act yourself
---Who you want making medical decisions if you are unable to act yourself
---How you want your assets distributed
---Name a guardian for your children?
• Preparing for the End: A Conversation with BJ Miller and Shoshana Berger (video, Sam Harris, Making Sense, 9-23-22, 1 hour) Sam Harris speaks with BJ Miller and Shoshana Berger about preparing for death. They discuss the difference between palliative care and hospice, the tension between getting the most out of life and not clinging to experience, planning for death while still healthy, the importance of an advance directive, navigating the healthcare system, pain control at the end of life, assisted suicide, psychedelic therapy for end-of-life anxiety, and other topics.
BJ Miller is a longtime hospice and palliative medicine physician and educator. Led by his own experiences as a patient, BJ advocates for the roles of our senses, community and presence in designing a better ending. His TED Talk has been viewed over 15 million times.
• My End-of-Life Decisions: An Advance Planning Guide and Toolkit (Compassion & Choices)
• End-of-life planning during COVID-19 (Compassion and Choices' COVID-19 Toolkit) Resources to help you navigate your care preferences at life's end, realize a dignified death, and finish strong. Understanding your options, using telehealth to reduce your risk, advance care planning, addendum to your advance directive, dying in the age of the pandemic, impact on underserved communities.
• Cancer, My Husband’s Doctor, and Catherine Deneuve (Anemona Hartocollis, NY Times, 11-17-22) Catherine Deneuve plays opposite Dr. Gabriel Sara, a real-life oncologist, in the film “Peaceful.”
The Widow writes: "After Josh died, I found a series of letters he had written to me in a shared computer folder marked “Home.” They were instructions for how to do things I had never done. How to program the thermostat. How to pay insurance, and haggle over the annual increases, even though it probably would not do any good. How to make the arrangements for his funeral. Recommendations on engravers for his gravestone. In those difficult months, I would have been lost without those instructions."
• Getting Your Affairs in Order Checklist: Documents To Prepare For The Future (National Institute on Aging, NIH)
---Checklist for getting your affairs in order
---Which documents do you need to have in place?
---Who can help with getting your affairs in order?
---What other decisions can you prepare for in advance?
---Graphic Checklist Use this checklist to ensure that health care and financial arrangements are in place before serious illness or a health care crisis.
• Complete Care Plan Form CDC's very helpful fill-in-the-blank form, with everything from names of your medical conditions; names and numbers of your medical providers, helpers, insurance, etc; and details about advance care planning (advance directive, living will, power of attorney, MOLST or POLST or POST, emergency contacts, names of people you have given a copy of your care plan to.
• We need to talk about dying (Patti Waldmeir, Financial Times, 2-12-21) A brother’s death showed it’s never too soon to have end-of-life conversations. "We knew so much about this 65-year-old, thrice-married eldest of four siblings, born so premature that he fitted into the nurse's hand but larger than life as he lived it. But we did not know, until fairly late in the process, that he had filled out legal paperwork to the effect that he did not want to be kept alive by machine if he had almost no chance of recovery. And yet he was. After suffering two crippling heart attacks in the ICU, he lingered for over a week on life support. My witty, vital, intuitive, comic brother languished on a ventilator, unable to scratch his nose, raise his eyebrow like Hercule Poirot (as he was wont to do from childhood) or ease the ventilator tube off the raw red sore that was his tongue."
• What to tell your family: In response to Patti Waldmeir's piece, Diane Tepfer wrote: "...I vowed to tell my own children, then 18 and 20, more than they could ever wish to know about my end-of-life wishes — and pronto. ..I had insisted they snapshot a copy of my living will and keep it on their iPhones, complete with detailed instructions for exactly when to pull the plug and whether to ventilate or medicate or feed me until then. I begged them to dance on my grave, rather than weep, and we discussed which Temptations songs would go best with which Ed Sheeran ballads at my wake. I threw in a copy of that 1982 cemetery contract just in case..."
• Ghosting: Help Better Protect Deceased Loved Ones from Identity Theft (ID Watchdog) "Stealing the identity of someone who is deceased—sometimes called ghosting—can go on for months before the crime is detected. This may be because identity thieves know how to take advantage of the time between when a person dies and when government agencies or financial institutions are notified of the death. How can you better protect your loved ones from identity theft even after they pass away?" See also A Haunting Tale of Deceased Identity Theft (Identity Theft Resource Center, ITRC, 888.400.5530) and What You Should Know About ID Theft After Death (Best Company).
• In Case You Get Hit by a Bus: How to Organize Your Life Now for When You're Not Around Later by Abby Schneiderman and Adam Seifer, with Gene Newman.
Start with your stuff (Access granted: passwords & codes),
All your money: everywhere it lives,
Your pad: an operating system,
Making first contact,
Assemble the pieces, Wills, trusts, and powers of attorney,
Money you owe: debt, credit & insurance,
Your medical checkup
Let's get digital,
The finishing touches,
Memories: the kind you see, taste, and hold;
Telling the story of your life,
It's in the mail: legacy letters,
It's (really) your funeral.
• Preparing an Emergency Kit in Plain English (Common Craft video, part of an excellent series)
• Creating a Roadmap for Your Heirs (Kevin Brasler, Washington Consumer Checkbook, 5-18) An organized checklist of information to have available for your survivors, should something happen to you.
• Why You Need to Make a 'When I Die' File—Before It's Too Late (Shoshana Berger and BJ Miller, Time, 8-1-19) Creating a findable file, binder, cloud-based drive, or even shoebox where you store estate documents and meaningful personal effects will save your loved ones incalculable time, money, and suffering. How-to information here and even more in the book, A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death.
• 7 Ways to Avoid Making Your Kids Angry After You Die (Linda Stern, AARP, 4-2-19). Thanks, Linda. A remarkably helpful reverse to-do list!
• Sign These Papers (Suze Orman, AARP, Aug/Sept 2018) 5 estate planning documents that she recommends for every family (and explains for readers):
Advance directive, durable power of attorney for health care (regularly included in advance directive) revocable living trust, will, durable financial power of attorney.
• Let's talk about dying (video, Peter Saul, TEDxNewY). Listen or read transcript. We can't control if we'll die, but we can "occupy death," in the words of Peter Saul, an emergency doctor. He asks us to think about the end of our lives -- and to question the modern model of slow, intubated death in hospital. Two big questions can help you start this tough conversation:
(1) "In the event that you became too sick to speak for yourself, who would you like to speak for you?"
(2) "Have you spoken to that person about the things that are important to you so that we've got a better idea of what it is we can do?"
Dying is shaping up to be a “train wreck” for most of us, unless we do something to start reclaiming the process from over-medicalization. He also says that how we die lives on in the minds of everybody who survives us, and the stress created in families by dying is enormous. In Miami, three out of five people die in intensive care. And dying in intensive care is seven times as stressful as anywhere else. Get that advance directive written and have frank conversations with the people who care about you and are likely to have a say about your final days.
• Estate Planning for the Savvy Client: What You Need to Know Before You Meet With Your Lawyer by Mary L. Barrow (Savvy Client Series) Helps you see the big picture and know what to think through.
• Business Docx: Business Succession Planning Checklist: 32 Questions To Ask If You Own A Family Business (Wealth Counsel)
• Who would contact your clients if you got hit by a bus? (Luke Finley and Laura Ripper, SfEP blog, Society for Editors & Proofreaders)
• How to Prepare for an Unexpected (Long) Absence (Adrienne Montgomerie, Copyediting, 8-24-15) "Whether you work in a home office or one filled with coworkers, chances are that few other people know exactly what you’re working on and what has to be done. Most of the information is on the tip of your tongue, not written down. Would your coworkers know where to pick up the project to continue your work, or even what projects you are prioritizing? If you are not around coworkers daily, how long would it take for someone to notice your absence? A missed deadline, perhaps? Unanswered emails?"
• One Day, You're Going to Die. Here's How to Prepare for It (Thorin Klosowski, Lifehacker, 3-28-13) What to do, step by step, to organize the details of your life that your survivors may or will need to know.
• A Respectful Deference to Elders Curdles Into a Fight Over Assets (Ron Lieber, Estate Planning, NY Times 11-28-14) ...even people who do have a will often don’t take the next step and consider end-of-life care on their own. “The care is a hugely common source of conflict that people don’t discuss because they think too much about the post-mortem will as opposed to the living will. ... You don’t want to be having a crash course in how to make these decisions...There should have been a conversation long before it was necessary. Not only are you clouded by emotions, but the person who needs to have a voice [may not be] available.”
• How to Create an In-Case-of-Emergency Everything Document to Keep Your Loved Ones Informed if Worst Comes to Worst (Melanie Pinola, Lifehacker, 6-30-11)
• If Something Happens to Me by Joseph R. Hearn and Niel Nielsen (a workbook to organize legal, financial, and insurance information)
• More things to know about wills and inheritance plans
• Single? No Kids? Don’t Fret: How to Plan Care in Your Later Years (Susan B. Garland, NY Times, 3-23-18) Various approaches (and services) for elder orphans to organize, including a network of friends and social groups, when you don't have close relatives to count on to "have your back" in emergencies and when your health and brainpower decline. Among recommendations:
---Why Hire a Geriatric Care Manager?
---A local "village" (if you don't have one, start one!)
---EverSafe (1-888-575-3837, to monitor your accounts for fraud, scams, and financial exploitation)
---Elder Orphan Facebook group
---Lyft (the ride-hailing service, less expensive than taxis)
• Lessons on dealing with critical illness (Linda Knapp, Seattle Times, 5-17-06) Moral of this story: Before a major illness strikes, talk to your significant other(s) about how such a crisis would be handled, from covering medical bills to managing child-care issues. Remember also to make a list of your dearest friends and relatives, who should be notified when you are seriously and especially critically ill, so they can be in touch, maybe visit, and above all not experience the shock of learning you have died when they didn't even know you were ill.
• My Family Record Book: The Easy Way to Organize Personal Information, Financial Plans, and Final Wishes for Seniors, Caregivers, Estate Executors, etc. by Harris A. Rosen
• Legal Guide for the Seriously Ill: Seven Key Steps to Get Your Affairs in Order, prepared by the American Bar Association Commission on Aging for the National Hospice and Palliative Care Organization. Step-by-step instructions on planning for health care expenses; managing health, money, property and personal decisions; planning for the care of dependents; knowing your rights as a patient; and getting your legal documents in order--with information on regulatory and legislative changes related to health care.
• Where to find my important papers (a fill-in-the-blanks form from Family Caregiver Alliance)
• Household and personal property inventory book (Holly Hunts and Brenda Cude, Extension services, University of Illinois at Urbana/Champaign), for the detailed inventory that will be invaluable should disaster strike
• Retirement 101
• Get It Together: Organize Your Records So Your Family Won't Have To by Melanie Cullen and Shae Irving. This workbook helps you organize instructions or information for survivors: secured places and password, your wishes for final arrangements, estate planning documents, employment records, insurance policies, tax records, retirement accounts, government benefits, and real estate records.
• How long (and where) to keep important papers (Good Housekeeping chart). Some go in an emergency kit in a small fireproof safe (birth and death certificates; Social Security cards; passports; emergency contact info (insurance agents, doctors, next of kin); marriage certificates, divorce decrees; wills; copies of driver's license, green card, and other ID; copies of lifesaving prescriptions (such as insulin, asthma inhalers); account names and numbers for banking, investment, and credit card accounts; inventory of household valuables. Back up all the info on a disk, or with photocopies, and give a copy to a trusted friend or your lawyer. Check out Easy Access to Important Documents Key to Recovering from a Disaster (ButtonedUp.com)
• Last Will and Testament (Yours and the One the State Has for You) (Ronald Zack, Elder Care Matters). The example is set in Arizona, but the principles are general: why you MUST create a will and what happens if you don't.
• Checklist for My Family: A Guide to My History, Financial Plans and Final Wishes (Sally Balch Hurme, American Bar Association and AARP)
• Medical history: Compiling your medical family tree (Mayo Clinic on what to include in such a history)
• Madeline Kripke, Doyenne of Dictionaries, Is Dead at 76 (Sam Roberts, Those We've Lost [to Coronavirus], NY Times, 4-30-2020) A woman of many words, mostly unspoken, she amassed a lexicographic trove of some 20,000 books, much of it crammed into her Greenwich Village apartment. After avoiding eviction in the mid-1990s by agreeing to remove the volumes stacked in the hallway, she had hoped to transfer the whole enchilada [slang for the entirety] from her apartment and three warehouses to a university or, if she had her druthers [n., preference], to install it in her own dictionary library, which she never got to build. “Unfortunately, it appears that no clear plan existed for her collection,” her brother, her only immediate survivor, said in a phone interview. “We are now in touch with some of her expert friends for advice.”
Paperwork for expressing your end-of-life and emergency-care preferences (U.S.)
POLST, MOLST, COLST MOST, POST, TPOPP, etc.
• 9 End of Life Documents Everyone Needs a once-over-succinctly list of documents in which to spell out your medical and financial last wishes (Emily Crowley, Estate Planning, Legal Templates, 6-2-20) Followed by explanations of the documents: living trust, organ & tissue donation, financial power of attorney, personal and financial records, living will, DNR (do not resuscitate), medical power of attorney, last will & testament, financial plan & obituary.
• The Right Paperwork for Your End-of-Life Wishes (Jessica Nutik Zitter, The End, Opinionator, NY Times, 4-29-15) "The advance directive should be seen as a conversation starter...its purpose to chart the broad strokes, to delineate the guiding principles....between two general approaches to treatment — to prolong life or not to prolong life. ...for those, like my patient, who are absolutely clear that they want to be allowed to die a natural death when the time comes — if you live in a state where it’s available, you must complete a Physician Orders for Life-Sustaining Treatment, or POLST form (also known informally as a pre-hospital DNR), and have it signed by your doctor."
• Variations on that name: POLST or its equivalent--the names vary by states and medical professionals have more authority with these documents than lawyers do. These are legal documents for people with advanced illnesses, which specify the type of care a person would like in an emergency medical situation. They go by various names and differ in details:
POLST: physicians order for life sustaining treatment (doctors must sign)
MOLST: medical order for life sustaining treatment (must be completed by a physician, nurse practitioner, or physician assistant)
COLST: Clinician Orders for Life Sustaining Treatment
MOST: Medical Orders for Scope of Treatment
POST: Physician Orders for Scope of Treatment
TPOPP: Transportable Physician Orders for Patient Preferences.
• State-by-State POLST Forms (EverPlans) All of the POLST or POLST-like types of forms can be found here but when, occasionally, they aren't there, you can search by the state name and document type and it will come up online.
• U.S. Living Will Registry (aka U.S. Advance Care Plan Registry). For registering your living will, advance directive, organ donor information, and other important papers and information).
• State by state advance directive forms (U.S. Living Will Registry) For those who want online storage of important documents--many will stick to paper and you ought to have a paper document on hand at exit from your home (or on fridge) for EMR personnel to take to hospital.
• State-by-State Guides (EverPlans state-based information on Death Certificates, Advance Directives and more (Advance Directive Forms, Digital Estate Laws, Organ Donation Registries, Probate and more)
• State-By-State Organ Donation Registries (EverPlans)
• Download your state's advance directive (CaringInfo)
• State-by-State Advance Directive Forms (EverPlans)
• POLST programs in your state
• State-by-State Probate Laws (EverPlans)
• EverPlans state-by-state guides
• End-of-Life Decision-Making (Family Caregiver Alliance). Explanations of end-of-life documents.
• Where to Find My Important Papers . Here's the printer-friendly version.
• The 25 Documents You Need Before You Die (PDF, Saabira Chaudhuri, Wall Street Journal, 7-1-11) Put these together in one place, for those taking care of your estate after you die.
• Navigating the Logistics of Death Ahead of Time Tara Siegel Bernard, Your Money, NY Times, 3-28-14)
• Everplans Walks You Through All the Steps Needed to Deal with Death (Yours or Someone You Know) (Melanie Pinola, Lifehacker).
• EverPlans (practical advice on a range of topics)
• After Steps
• SecureSafe (privacy protected online storage of important files and passwords that you can access from anywhere, anytime)
• What If? Workbook (by Gwen Morgan) A fill-in-the-blank guide for putting your affairs in order.
Buy Now - Dying: A Book of Comfort
Advance directives, POLSTs, MOLSTS, living wills,
health care (medical) proxies
How you want to be treated when you can't speak for yourself.
"Half of the people older than 65 admitted to hospitals are incapable of making choices for themselves. So we need to choose a decision-maker in case we can’t decide for ourselves. And to fill out an advance directive." ~Ellen Goodman, Washington Post
In addition to the advance directive, if you're not in good health or are susceptible to life-threatening accidents, consider also medical orders (or physicians orders) for life-sustaining treatment (indicating either if you want to die a natural death or rather want some portion or all of the life-sustaining options available in hospitals--see more info further down the page.
• ‘No Intubation’: Seniors Fearful of COVID-19 Are Changing Their Living Wills (Judith Graham, KHN, 5-12-2-20) Last month, Minna Buck revised a document specifying her wishes should she become critically ill. “No intubation,” she wrote in large letters on the form, making sure to include the date and her initials. Buck, 91, had been following the news about COVID-19. She knew her chances of surviving a serious bout of the illness were slim. And she wanted to make sure she wouldn’t be put on a ventilator under any circumstances.
• Preventing intubation in acute respiratory failure: Use of CPAP and BiPAP (McGill University) Until recently, options for treating treatment of severe acute respiratory failure were limited, so if patients needed support breathing they were subjected to endotracheal intubation and ventilation with a mechanical ventilator--with a range of serious risks and side effects. Now an alternative treatment for some patients may be Non-Invasive Ventilatory Support (NIVS) in the form of Continuous Positive Airway Pressure (CPAP) or Bi-level Positive Airway Pressure (BiPAP).
• The Right Paperwork for Your End-of-Life Wishes (Jessica Nutik Zitter, The End, Opinionator, NY Times, 4-29-15)
"The advance directive should be seen as a conversation starter...its purpose to chart the broad strokes, to delineate the guiding principles....between two general approaches to treatment — to prolong life or not to prolong life. ...for those, like my patient, who are absolutely clear that they want to be allowed to die a natural death when the time comes — if you live in a state where it’s available, you must complete a Physician Orders for Life-Sustaining Treatment, or POLST form (also known informally as a pre-hospital DNR), and have it signed by your doctor."
Or BY its equivalent--the names vary by states and medical professionals have more authority with these documents than lawyers do.
POLST : physicians order for life sustaining treatment (doctors must sign)
MOLST: medical order for life sustaining treatment (not just doctors sign)
COLST: Clinician Orders for Life Sustaining Treatment
MOST: Medical Orders for Scope of Treatment
POST: Physician Orders for Scope of Treatment
TPOPP: Transportable Physician Orders for Patient Preferences.
• Liz Salmi's advance directive. An unusually thoughtful document from a woman who turned her brain cancer (diagnosed in 2008) into a generous research project (The Liz Army), sharing what she learned along the way. See Cancer survivor-turned-researcher advocates for patient access to medical notes (Healio, 3-25-21), and What I did After a Brain Cancer Diagnosis (Living Adaptive), an interview. "My research areas of interest include: the impact of transparency on patient-clinician communication ("open notes"); patient perspectives in malignant brain tumors (brain cancer); and stakeholder engagement in research."
• Starting the Conversation About End-of-Life Care (AARP, 12-21-15) How we want to die is the most important and costly conversation America isn’t having.
An advance directive (aka advance health care directive) is a legal document, stating how you want to be treated at the end of your life--as Suze Orman puts it, "it offers loved ones and medical professionals a road map for your health care."
Two important parts of the advance directive:
(1) The health care proxy, aka durable health care power of attorney (naming the person you appoint to make medical treatment decisions for you if you cannot make them for yourself. You can include instructions for decision-making and should also name a backup or backups.) This may be the most important part of the advance directive, because it is not available in the MOLST, POLST, etc.
(2) The living will (identifying the types of treatment you do and do not want at the end of your life-- stating your wishes about life-sustaining medical treatment if you are terminally ill, permanently unconscious, or in the end-stage of a fatal illness). You need to decide
1) the type of life support treatment you want or don't want,
2) whether or not you want a Do Not Resuscitate (DNR) or a Do Not Intubate (DNI) order, and
3) whether or not you want to be an organ donor should you die.
Suze Orman adds "Under what circumstances might you want doctors to stop trying to fix what ails you? When might you want pain relief, even if it hastens your death?"
Not to be confused with Living trusts and revocable trusts, which are about what you want done with your material possessions. See Nolo's chart showing differences between living wills and living trusts.
• Download Your State's Advance Directives (state-by-state forms, CaringInfo, National Hospice and Palliative Care Organization)
• Advance directives are legal documents, but they are NOT medical orders. Give your doctor a copy of your advance directive, but there are situations in which your advance directive may be ignored. Before you undergo a procedure or surgery, or if you have an advanced illness, it may be even more important to be sure your medical team has a copy of your Physicians Order for Life Sustaining Treatment (POLST), a document with the force of medical authority, which goes by varying names, depending on what state you are in (being called, for instance, a Medical Order for Scope of Treatment (MOST), Medical Orders for Life Sustaining Treatment (MOLST), and other names. For the right form for your state, go to NOLO for Physicians Orders for Life Sustaining Treatment (POLST) Forms or to Everplans.
"POLST forms are available in more than half of the states in the U.S. and they go by various names – MOLST, POST, COLST, TPOPP, LaPOST, etc." For medical orders (to be followed by medical professionals), you should have a POLST, MOLST, or whatever your state calls it. State forms allow you to create documents that specify the type of care you would like in an emergency medical situation; because these are medical orders signed by doctors, they are the forms emergency medical personnel are most likely to follow.
Figure out what your own wishes (and possible options) are or may be in future, share your choices, and talk with your family about what you prefer. If you wish to have no life-sustaining measures taken, the family member who lives near you and sees you all the time may know that and honor your wishes; the family member who rarely sees you and feels guilty about it may want to save your life no matter what (or may want to spare you suffering, despite your wishes to make every effort to extend your life).
If the family cannot agree on what care to provide, and if there is no MOLST or POLST, the emergency care medical team is likely to try to save your life, no matter what. Talk with everyone but also express your wishes in writing in a place where your wishes can be found (the first place firemen look is on the refrigerator). File one copy with your doctor(s).
The health care proxy part of the advance directive names the person who has the authority to make medical treatment decisions for you should you be unable to (say, you've been in an accident and are in a coma). Choosing a surrogate (aka agent, proxy, representative) is a legal process, so you will use the legal document, an advance directive. (Scroll down for more entries on choosing a health care proxy.)
The living will part of the advance directive expresses your wishes but it is NOT a medical order.
The POLST form (aka MOLST, POST, MOST, ETC.) is a medical order--that's the one they're supposed to obey in a medical emergency or a life-threatening situation.
Links to information and guidance about advance directives
• Advance directives by state (Compassion & Choices) Download the free advance directives and instructions for your state--as Word docs or PDF (portable document format)
• The Trouble With Advance Directives (Paula Span, New Old Age, NY Times, 3-13-15) Too often advance directives aren't easily found when medical decisions must be made, and sometimes they aren't medically precise enough for ambiguous situations; even a a Physician Orders for Life Sustaining Treatment, or Polst, form, specifying comfort care only, may not cover all bases (e.g., dementia care). "What they really need, experts say, is an ongoing series of conversations with the relatives or friends who will direct their care when they no longer can. In a crisis, doctors will turn to those people — more than to any document — to learn what the patient wants.
• Conversations About Dying. The Conversation Project, Five Wishes, How to Talk to Your Doctor, and other helpful articles to help you start thinking and talking about your end-of-life preferences. Remember: your family needs to know your wishes and you need to get them on board, so they're carried out. See also Being Prepared in the Time of COVID-19 (Conversation Project): Do three things: Pick person to be your healthcare decision-maker. Talk about what matters most to you. And think about what you would want should you become ill with Covid-19. Ask yourself the questions posed (e.g., if you become ill do you want to be taken to a hospital? Do you want to be put on a ventilator?)
• How to make sure loved ones know the medical care you'd want (Montgomery Hospice, Maryland) How to make sure loved ones know the medical care you'd want. If you have a sudden accident or illness that leaves you unable to communicate, who would make medical decisions for you? Would they know what you want?Get started by answering these questions and talking them over with those you love. See also Speakeasy Howard.
• Do You Want to Die in an I.C.U.? Pandemic Makes Question All Too Real (Paula Span, NY Times, 4-24-2020) Sobering statistics for older patients sharpen the need to draw up advance directives for treatment and share them with their families. "Take out your phone and do a video selfie: 'This is who I am. This is the date. This is what I want.' Send it to your friends and relatives.
But see also the sections below about signing a MOLST, POLST, etc., to have more chance of having your wishes honored.
• New legislation may improve advance care planning (Liz Seegert, Covering Health, AHCJ, 9-19-22) New companion bills recently introduced in the House and Senate would expand access to critical advance planning services in Medicare and allow people with serious illness to access more advance care planning services. The Improving Access to Advance Care Planning Act would allow social workers to provide advance care planning (ACP) services, remove beneficiary cost-sharing, promote increased education for providers on current ACP codes, and improve reporting on barriers to providing ACP services and billing the corresponding codes.
• A New Paradigm Is Needed: Top Experts Question the Value of Advance Care Planning (Judith Graham, KHN, 1-6-22) “Many highly educated people think documents prepared years in advance will protect them if they become incapacitated. They won’t....People’s preferences change as their health status shifts; forms offer vague and sometimes conflicting goals for end-of-life care; families, surrogates and clinicians often disagree with a patient’s stated preferences; documents aren’t readily available when decisions need to be made; and services that could support a patient’s wishes — such as receiving treatment at home — simply aren’t available. (Read the article for real-life scenarios.) But this critique of advance care planning is highly controversial and has received considerable pushback....
"For all the controversy over written directives, there is strong support among experts for another component of advance care planning — naming a health care surrogate or proxy to make decisions on your behalf should you become incapacitated. Typically, this involves filling out a health care power-of-attorney form. Most people want their surrogates to be able to respond to unforeseen circumstances and have leeway in decision-making while respecting their core goals and values, Sudore said. Among tools that can help patients and families do this are
---Sudore's Prepare for Your Care program;
---The Conversation Project
---Respecting Choices (person-centered care)
---the Caring Conversations Workbook (Center for Practical Bioethics)
---ACP Decisions (videos, patients engaging in shared decision making with their healthcare providers)
• You have filled out your advance directive. Now what? (National Hospice and Palliative Care Organization) Who do you tell about it, to whom do you give copies, where do you keep your copies (not in a safe deposit box--people need to see them)
• Oregon Emphasizes Choices at the End of Life (Kristian Foden-Vencil, Shots, NPR Health News, 3-8-12) It turns out Americans facing death want something they also want in life: choice. A two-page form created in Oregon is providing insight into how people want to be cared for at the end of their lives. And the so-called POLST form — short for Physician Orders for Life-Sustaining Treatment — offers far more detailed options than a simple "do not resuscitate" directive does.
Health care proxy
Health care (medical) proxies
Who will speak for you
• All You Need to Know About Naming a Health Care Proxy (Everplans) Reasons for naming a health care proxy, decisions they may make on your behalf, and the duties they perform. See also Who will speak for you? How to choose and be a health care proxy (Conversation Project, March 2017).
• The Agent's Role in End-of-Life Care (Robert Wood Johnson report)
• Choosing a Health Care Proxy When You’re an ‘Elder Orphan’ (Carol Marak, Next Avenue, 2-15-17) It is more difficult without family around, but making a choice is vital. There's a private Elder Orphans Facebook group where these issues are often discussed.
• Making Medical Decisions for Someone Else (proxy guide) (PDF, American Bar Association) Click on the link to download document. Excellent advice on some of the things you may have to do as a proxy. See also Giving Someone a Power of Attorney for Your Health Care (PDF, American Bar Association) A guide with an easy-to-use legal form for all adults.
• Role of the Health Care Agent (proxy) for Covid-19 (PDF, Respecting Choices, Person-Centered Care)
• Making Medical Decisions for Someone Else: A Guide for Marylanders (PDF, an American Bar Association how-to handbook).
• Advance Care Planning (Montgomery Hospice, Maryland). See Be Heard. Even when you can't speak for yourself Your medical care should be up to you, even in emergencies or situations when you’re unable to speak. Speak(easy) Howard’s goal is for every adult in Howard County to talk about their preferences for care and name their health care agent. See also How to make sure loved ones know the medical care you'd want (a one-page flyer with questions for you to answer).
• My Directives makes it easy to create a state-of-the-art emergency, critical and advance care plan. You can answer questions in your own words or pick from a selection of the most common answers.
• Advance Care Planning: What You Need To Know Now (Nov. 8, 2017, Kaiser Health News senior correspondent JoNel Aleccia moderated a discussion of the pressing issues surrounding end-of-life advance care planning. The discussion covered these topics: how to navigate the medical, legal and ethical landscape of end-of-life care, what are advance directives and who should have one, how do people make sure that their wishes for end-of-life medical care are honored, and the special needs of dementia patients.
• Advance Care Directives and the Person with Dementia (Fran Myers, founder and executive director of Advance Care Advocate website) Read and follow the instructions for making multiple copies of a Do Not Resuscitate order. Without such an order, CPR will be started by the first responders if there is no pulse or breathing. It is the law. CPR is a very aggressive procedure. It is not often successful in the older patient and should not be done on anyone for whom a decision has been made to avoid it.
• Myths and Facts About Health Care Advance Directives (Commission on Law and Aging, American Bar Association)
• Prepare for Your Care (Video: People talking/thinking about their end-of-life preferences walk you through the steps of choosing a surrogate decision-maker, deciding what your own preferences are, and communicating same.
• Why we should all have the end-of-life conversation
• Videos On End-Of-Life Choices Ease Tough Conversation (Ina Jaffe, Shots, NPR, 3-29-15) It begins: "You're being shown this video because you have an illness that cannot be cured." Then, in an undramatic fashion, it shows what's involved in CPR, explains what it's like to be on a ventilator, and shows patients in an intensive care unit hooked up to multiple tubes. "You can see what's really going to be done to you," says Katakura. And you can decide not to have it done. The video explains that you can choose life-prolonging care, limited medical care, or comfort care.
• Straight from the Patient’s Mouth: Videos Can Clearly State Your End-Of-Life Wishes (Judith Graham, KHN, 11-30-17) Only a few U.S. organizations offer people the chance to create video testimonials, which are meant to supplement and expand upon written living wills and Physician Orders for Life Sustaining Treatment (POLST), now available in 26 states. Do-it-yourself videos are also a convenient option. Video can give families confidence "Mom was competent and knew what she was signing and no on tricked her by sticking a document in front of her and asking her to sign. Similarly, videos have the potential to ease some of the emotional angst that surrounds end-of-life decision-making. “A family gets to hear Mom saying, in her own words, what she wants, which can be profoundly reassuring....”
• Deadlock (Zachary Reese, Pulse, 8-17-18) The patient with acute myeloid leukemia wanted the tube removed, but her husband (and health care proxy) refused. An updated living will would have made a difference.
• End-Of-Life Advice: More Than 500,000 Chat On Medicare’s Dime (JoNel Aleccia, KHN, 8-14-17) The 90-year-old woman in the San Diego-area nursing home was quite clear, said Dr. Karl Steinberg. She didn’t want aggressive measures to prolong her life. If her heart stopped, she didn’t want CPR. But when Steinberg, a palliative care physician, relayed those wishes to the woman’s daughter, the younger woman would have none of it. ... Steinberg used an increasingly popular tool to resolve the impasse last month. He brought mother and daughter together for an advance-care planning session, an end-of-life consultation that’s now being paid for by Medicare. In 2016, the first year health care providers were allowed to bill for the service, nearly 575,000 Medicare beneficiaries took part in the conversations, new federal data obtained by Kaiser Health News show.
• The Most Important Talk You Need to Have With Your Doctor (Barbara Sadick, AARP, 1-28-16) A talk with his primary care physician about his wishes for care near the end of life gave Bob Samuels "comfort that dying doesn't have to be painful — and more importantly, the likelihood of my end-of-life wishes actually being followed is now quite high." As of Jan. 1, 2016, Medicare has begun reimbursing physicians and other health care professionals for talking with patients about future medical decisions and their priorities for care at the end of life.
• ****What Doctors Know About CPR (Dr. Nathan Gray, a palliative care physician at Duke University School of Medicine, wrote and illustrated this excellent graphic piece about the realities of cardiopulmonary resuscitation, which is "must reading" before preparing an advance directive.) On TV, chest compressions are enough to bring someone back to life. The truth is more complicated. “
"Only about 1 in 5 who receive CPR will leave the hospital alive.
Only 1 in 10 elderly patients receiving CPR will be alive a year later.
In real life, the ritual will save some, but for the majority who receive it, CPR will be their last experience.
And in the late stages of many illnesses, CPR success can be dismally rare. Odds of survival in illnesses like advanced cancer and organ failure may be less than 2 percent." Gray shows a Code Blue being called, the mechanics and impersonality of the process and the statistics showing how few people actually survive intact. “Until you witness it in person it can be hard to capture the inhumanity of our medical routine,” he writes. He urges the medical community to not let technology interfere with its humanity.' CPR "was never meant to be applied to everyone. CPR cannot reverse the process of normal death from organ failure, cancer, or dementia. In these situations, it can be terribly ineffective." "Rarely do TV dramas show the aftermath of broken bones, difficult recovery, and brain injury that can be left when CPR works."
• CPR, by Default (Paula Span, New Old Age, NY Times, 1-31-2020) When very old patients suffer cardiac arrest, doctors usually tried to revive them — even if they were already near death. Despite dismal survival rates — already reported in the medical literature, though probably not widely understood by the public — often health care professionals support resuscitation anyway. "Because do-not-resuscitate orders apply only in hospitals, states began adopting non-hospital D.N.R. policies in the 1990s. But there is a newer and more comprehensive document, covering a variety of health care choices beyond resuscitation and carrying legal weight in any setting, called a Polst" (short for “physician orders for life-sustaining treatment”), a MOLST – medical order for life-sustaining treatment, and several other terms, varying by state.
• The heart-stopping reality of cardiac arrest (Charlotte Huff, Mosaic, 8-13-19) Cardiac arrests are usually deadly, even when they happen in well-equipped, well-staffed hospitals. So researchers are trying to understand how best to help more people survive and recover.
• Death Cafes and conversations about end-of-life concerns
• Medical Representative, Life-Supporting Treatment, and Advance Directives (Globe1234.com) This page tells you what to expect if you're in an accident and temporarily need a feeding tube or other life-supporting care (for example you'll learn you can ask for a very thin tube and Chloraseptic, and that CPR rarely breaks ribs, though EMTs often hear breaking cartilage).
It also discusses what to put in an advance directive so you have a strong representative to get only the care you want, when you're unconscious. There is interesting and disturbing information here:
*****WILL PEOPLE FOLLOW YOUR INSTRUCTIONS?****
Medscape has a scary and pointed survey of how doctors decide what care to give:
--- a third pull the plug when they want to, even if the family wants further care
--- a quarter pull the plug when the family asks, even if the doctor thinks the patient can recover
--- a quarter pull the plug on a newborn if they think s/he will have a "terrible" quality of life
--- a tenth undertreat pain because they fear trouble from the Drug Enforcement Agency or patient addiction
---a tenth deny treatment when insurance won't cover it, even when the patient can pay privately.
SOURCE: Medscape Ethics Report 2014, Part 1: Life, Death, and Pain
They surveyed 17,000 US doctors and 4,000 European doctors.
A nationally representative survey found that two thirds of people had advance directives before they died, but confirmed they were not always followed. Among incapacitated patients who had left instructions:
---Only 10 patients wanted all care possible; 5 got it but 5 did not.
---425 patients did not want all care possible; 395 got what they requested, but 30 got full care.
---14% of agents said problems came up in trying to follow the written instructions.
They surveyed next of kin for 3,764 people over 60 who died in 2000-2006 (random sample which represented 12 million deaths). Some advance directives named an agent, some gave instructions, some did both.
• Filing Suit for ‘Wrongful Life’ (Paula Span, New Old Age, NY Times, 1-22-2021) When Elaine Greenberg’s husband, Gerald, was diagnosed with early-onset Alzheimer’s, his specific advance directive — comfort measures only — went unheeded at the hospital where he was treated. More Americans are writing end-of-life instructions as the pandemic renders such decisions less abstract. But are medical providers listening? This article highlights the importance of talking with your health care agent and making sure your wishes are fully understood and will be carried out.
• Compassion & Choices Announces Settlement of Lawsuit over Texas Woman’s Needlessly Agonizing Death (5-22-19) Deceased woman's family to continue advocacy work to improve end-of-life care. Compassion & Choices and the estate of Sally Jordan announced a resolution to claims against her Texas healthcare providers for allegedly violating her Do Not Resuscitate (DNR) order by providing unwanted medical treatment for more than 10 days, causing her to suffer a needlessly agonizing death. “This case shows the importance of ensuring each medical facility and doctor you visit has a copy of your advance directive, completely understands your wishes and will honor them.”
• The Paradox of Religious Freedom in America (Compassion and Choices,1-25-23) When it comes to end-of-life care, sometimes freedom of religion requires freedom from religion. The care provided at 600+ Catholic hospitals and 1,600 long-term care and other health facilities is dictated by the U.S. Conference of Catholic Bishops’ Ethical and Religious Directives (ERDs) — which are based not on healthcare best practices or medical ethics, but on religious doctrine. The ERDs strictly prohibit practitioners from providing medical aid in dying. The ERDs also include such dogmatic directives as telling physicians whose patients suffer with intractable, untreatable pain to help them “appreciate the Christian understanding of redemptive suffering.” It’s no surprise that 71% of Americans want their own personal healthcare decisions to take priority over a healthcare facility’s religious values. This is why Compassion & Choices has joined forces with two national and several state coalitions to tackle the problem of the outsized influence of religious dogma in U.S. healthcare. Our legal team also is combating the oppositions’ attempts to prioritize religious values over a dying patient’s rights.
• Reconsideration of do not resuscitate orders in the surgical/procedural setting (American Academy of Nursing on Policy). This provides further explanation for why an advance directive might not be followed "in surgical and procedural settings."
• Where’s That Advance Care Directive? (Paula Span, New Old Age, NY Times, 10-17-13) People with advance directives (including "living wills") should, at a minimum, supply copies to their primary care physicians and to the individuals named as their health care decision-makers, and should keep copies close at hand themselves and easily available to emergency medical care people who come to the home (on the fridge or on the exit-from-home door).
• How Doctors Die (Ken Murray, Zolalo Public Square, 11-30-2011) "It's not like the rest of us, but it should be." Murray. a retired family practitioners, noticed that doctors and nurses opted out of the kinds of treatments he was providing to patients, and did a survey: 9 out of 10 doctors would choose do-not-resuscitate status near the end of life. Yet "Almost all medical professionals have seen what we call 'futile care' being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist."
• Living Wills (video, 10-minute explanation, Maryland Department of Aging). David Pessin of PK Law discusses living wills and other important elder law planning documents. It's really part 2 of an advance care directive; it's not about living and it's not a will.
• Psychiatric Advance Directive (National Resource Center on Psychiatric Advance Directives, NRC-PAD) A Psychiatric Advance Directive (PAD) is a legal document written by a currently competent person who lives with a mental illness. A PAD allows a person to be prepared if a mental health crisis prevents them from being able to make decisions. PADs may be drafted when a person is well enough to consider preferences for future mental health treatment. PADs are used when a person becomes unable to make decisions during a mental health crisis. State-by-state info.
• Advance Directives for Refusing Life‐Sustaining Treatment in Dementia. Essay by Bonnie Steinbock and Paul T. Menzel, Hastings Center Report, 10-11-18)
• Lessons on End-of-Life Care From a Sister’s Death (Paula Span, NY Times, 5-22-15) Among lessons learned in the hospital: Nobody in the hospital asks to see your advance directive but you should have one anyway "to instruct the family, to tell the people who will make decisions for you what you want and, as important, what you don’t want....(It is even more essential for ailing people without close family.)"
• With Dementia, More is Needed than a Boilerplate Advance Directive (Katy Butler, The Conversation Project, 2-25-19) "Given that most people nowadays decline slowly, a good end of life is rarely the result of one momentous choice. It’s more often the end point of a series of micro-decisions, navigated like the branching forks of a forest trail. In our family, one of those micro-decisions was allowing the insertion of the pacemaker, which I believe unnecessarily extended the most tragic period of my father’s life, as he descended into dementia, near-blindness, and misery. In the process of researching my new book, The Art of Dying Well, I’ve met many other people who’ve agonized over similar micro-decisions, such as whether or not to allow treatment with antibiotics, or a feeding tube, or a trip to the emergency room, for a relative with dementia....I believe that “comfort care” is what I want if I develop dementia. I have written the following letter —couched in plain, common-sense language, rather than medicalese or legalese — as an amendment to my advance directive." Go here or to Katy's book The Art of Dying Well for the amendment for an advance directive that covers what you might want should you develop dementia.
• One Day Your Mind May Fade. At Least You’ll Have a Plan. (Paula Span, The New Old Age, NY Times, 1-19-18) When Ann Vandervelde visited her primary care doctor in August, he had something new to show her. Dr. Barak Gaster, an internist at the University of Washington School of Medicine, had spent three years working with specialists in geriatrics, neurology, palliative care and psychiatry to come up with a five-page document that he calls a dementia-specific advance directive. See Advance directive for dementia. A simple way to document the medical care you would want if you had dementia.
• The Patients Were Saved. That’s Why the Families Are Suing. (Paula Span, The New Old Age, NY Times, 4-10-17) (In Maryland and most other states, Molst or Polst — Physician Orders for Life-Sustaining Treatment — forms become part of physicians' orders; they apply in every health care setting and provide a clearer guide to patients' wishes… "Physicians and hospitals have grown accustomed to the threat of lawsuits when they fail to save a patient’s life. Now, some face legal action for failing to let a patient die. Several similar lawsuits around the country say that health care providers disregarded or overrode advance directives, resuscitating people whose instructions clearly said not to." A decision by the Supreme Court of Georgia said pointedly “it is the will of the patient or her designated agent, and not the will of the health care provider, that controls.” If nursing homes resuscitate patients with D.N.R. (do not resuscitate) orders, their grades on Medicare's Nursing Home Compare are lowered.
• A Final Prescription (Paula Span, New Old Age, NY Times, 7-16-10) A P.O.L.S.T. form effectively wards off unwanted medical interventions, yet it doesn’t prevent dying patients from having their pain treated.
• When There's No Family (Paula Span, NY Times, 9-23-13) Even when you’ve written advance directives, someone has to bring those documents to the attention of medical personnel. That person may have to become a forceful advocate on an incapacitated patient’s behalf. If not a sibling or nephew, a friend or neighbor, who can do it?
• Get Your S--t Together (Chanel Reynolds’s website "named for the scolding, profane exhortation that her inner voice shouted during those dark days in an intensive care unit," where her husband ended up after being hit while riding his bicycle. Excellent templates for end-of-life planning: Checklist, will, living will, power of attorney, details. Her husband died in 2009. Here's her story and advice: A Shocking Death, a Financial Lesson and Help for Others (Ron Lieber, NY Times, 1-11-13).
• When a Medical Proxy Saves a Life (Wendy Spero, Opinionator, NY Times, 4-29-15) A 93-year-old grandmother facing surgery for sepsis wants to die, but her daughter-in-law, who has medical proxy, overrules her. A surprising ending and message about in-law relationships and final wishes.
• When living wills are not enough (journalist Norman Bauman, drawing on personal experience)
• Advance Medical Directives Help with End-of-Life Decisions (David Cochran, My Senior Portal). Above all, TALK:
T – Take time to have the conversation with your physician and family.
A – Always be open and honest.
L – Leave no doubt about your values and preferences.
K – Know that advance care planning is a quality of life choice
• You Owe It to Yourself and Your Family to Execute an Advance Medical Directive (John J. Campbell, ElderCare Matters, 3-2014). Using the Terry Schiavo case as an example, Campbell explains the difference between a Living Will and a Medical Durable Power of Attorney (MDPOA), which one trumps the other, and why you should have one or both.
• Respecting Choices (Advance care planning, Gundersen Health System). You can download Return on Investment document.
• Life Care Planning (Kaiser Permanente)
• Advance Directives (Globe1234's useful reference material and data--the facts in areas you probably won't know to consider!)
• Morphine, Ice Cream, and Chocolate: My End of Life Wishes (Sara Perry, October 2010). Sara was a student in my life story writing workshop at the Writer's Center in Bethesda.
• End-of-life instructions find no place in electronic health records (Joanne Kenen, Politico, 1-9-15) "The federal government has spent billions helping doctors and hospitals digitize patients’ lives, but there are still many holes in our electronic records including a big one: We can’t list end-of-life wishes." ... "One company, MyDirectives.com, has created a simple system where a hospital or physician can click a link that will lead to an easily accessible electronic registry that houses the documents people fill out online."
• Casey Kasem’s end-of-life drama: a lesson for the rest of us (Randi Belisomo, Reuters, 6-16-14). "Kasem’s advance directive, stating he did 'not desire any form of life-sustaining procedures, including nutrition and hydration,' assigned his daughter as surrogate healthcare decision-maker. His daughter’s authority, however, was contested by her stepmother, Kasem’s wife."
• When ‘Doing Everything’ Is Way Too Much (Jessica Nutik Zitter, The End, NY Times, 2-7-15) "In our well-meaning attempts to keep our patients alive, we I.C.U. physicians often play Whac-a-Mole with illness, batting down each problem as it surfaces. All in the name of patient autonomy." Patients who instruct "do everything you can to save me" don't understand how awful things may be when those orders are followed.
• It's Not Just About Quality of Life (Sandeep Jauhar, Opinionator, NY Times, 5-2-15 ) A large percentage of I.C.U. clinicians report experiencing conflicts weekly over end-of-life care. Without clear guidance, many of these physicians will continue to provide treatment that is morally repugnant to them. We Americans need to state unequivocally that, in some cases, prolonging life is not money well spent.
• Paperless World Can Leave Heirs In The Dark (Robert M. Slutsky, ElderCare Matters, 1-2014) A letter of instruction gives heirs all the information they need about things that aren't mentioned in your will--where you have bank and charge accounts, for example, organizations you belong to that you want notified if you die -- a good list.)
• State Your Intentions With a Letter of Instruction. For a great example, see Kristie Miller's Letter of Intent. Kristie does a great job telling her family what she would want should she decline.
• Thy Will Be Done (Victoria Sweet, Health Affairs, May/June 2007) Think your living will takes care of everything? Maybe not. "Give a good physician someone who is tube-fed, and that patient can be kept alive, oh, I think, indefinitely....I have yet to see a patient on the feeding-tube ward die..." Make sure that your living will expresses what you do—and do not—want done.
• Giving Someone a Power of Attorney for Your Health Care: A Guide with an Easy-to-Use Legal Form for All Adults (PDF, prepared by the American Bar Association's Commission on Law and Aging)
• To Code or Not To Code - Considerations and Consequences (Alan C. Horowitz, Assistant Regional Counsel, HHS, PDF) This paper on the legal aspects and ramifications of performing - or withdrawing and withholding CPR-- addresses the reality that health care professionals do not always honor (or may not be aware of) a patient's DNR orders. They are more likely to heed Physician Orders for Life-Sustaining Treatment (POLST).
• Amy Harmon's (Before I Kick the) Bucket List. Wish 5: 5) End of life care is more compassionate and driven by preferences. "No one should be forced to undergo unnecessary and painful treatment that has little or no hope of improving or extending life." Physicians’ Orders for Life-Sustaining Treatment (POLST) "allows patients to express their wishes about various end-of-life interventions, such as intubation, defibrillation, and even antibiotics. POLST research shows that POLST use significantly reduces unwanted hospitalizations, provides treatment consistent with patients’ wishes more than 90% of the time, and decreases medical errors. Moreover, the process of completing POLST can spark important conversations with family members that can make end-of-life decisions easier. It is currently endorsed in only 15 states, with over 29 states developing programs. I want to see it available in all 50 states. Death is part of life and I believe POLST should be part of health care."
• National POLST website
• Physicians Orders for Life Sustaining Treatment (POLST) Forms. "POLST forms are available in more than half of the states in the U.S. and they go by various names – MOLST, POST, COLST, TPOPP, LaPOST, etc."
• Hiring an End-of-Life Enforcer (Paula Span, NY Times, 10-24-13). A new type of professional, the health fiduciary, could help older patients with no family or close friends to make medical decisions on their behalf if needed and to help them navigate the health care system.
• Values Conflict at the End of Life (Paula Span, New Old Age, NY Times, 9-3-13). Ideally, when we die, we have prepared a written document, an advance directive, stating what we wanted doctors to do or not do, and our about-to-be survivors would follow our instructions. But most people haven’t taken that step, or family members don’t know where the advance directives are, or their doctors don’t know that they exist or what’s in them. And surrogates often base their judgments on considerations other than what the patients want. So read this story and get your act together!
• Advance Directive wallet cards (NOT the same as a do-not-resuscitate or DNR order), two versions:
~Wallet card for advance health care directive and living will
~Wallet card for advance directive, with name of health care agent
• Advance Directive Registry (U.S. Living Will Registry)
• The Last Word: The Catholic case for advance directives (Daniel P. Sulmasy, 11-29-10).
• Advance Directive for the Visually Impaired (example from Maryland Attorney General)
• State Organ and Tissue Donor Registries (Organdonor.gov, U.S. Dept of Health & Human Services)
• On giving, or receiving, organs (Organdonor.gov resources on giving an organ, getting an organ, transplantation, etc.) Many resources on this website. On the fence? Read this story: A gift of life (Marla Cohen's story about Corey Gradin's lung transplant)
• The difference between a living trust and a living will (Lauren Rickert, Helium)
• The Fifth Season: A Daughter-in-Law's Memoir of Caregiving by Lisa Ohlen Harris. While caring for her mother-in-law, Jeanne, Harris helped Jeanne file an advance directive specifying that no extraordinary measures were to be taken to preserve life. As they navigated the healthcare system in Jeanne’s final months, the two women realized that "an advance directive is not as clear and controlled as it seems. End of life issues involve a series of small decisions—sneaky ones, with no big drama—and life support is already established before any one big decision is made."
• Living Wills: A guide to advance directives, health care power of attorney, and other key documents (Harvard Health Publications)
Options for life-sustaining treatment
Options for life-sustaining treatment include: Cardiopulmonary resuscitation (CPR); artificial ventilation; blood transfusion; hospital transfer; medical workup; antibiotics; artificially administered fluids and nutrition; and dialysis.
• Five Wishes, a popular form that helps you let your family and doctors know:
---Who you want to make health care decisions for you when you can't make them.
---The kind of medical treatment you want or don't want.
---How comfortable you want to be.
---How you want people to treat you.
---What you want your loved ones to know.
• How to Evaluate Life Support Treatments and What They'll Do to Your Body (Everplans) For each treatment (surveyed briefly), it's helpful to consider the following questions:
What purpose does this treatment serve?
What are the side effects?
Does this treatment usually improve overall health, or does it simply extend life?
• Most physicians would forgo aggressive treatment for themselves at the end of life, study finds (Tracie White, Stanford Medicine, 5-28-14) An overwhelming percentage of the 2013 doctors surveyed — 88.3 percent — said they would choose “no-code” or do-not-resuscitate orders for themselves if they were terminally ill, but would tend to pursue aggressive treatment for patients facing a similar prognosis. The survey shows that physician attitudes toward advance directives haven't changed much since the passage of a 1990 law giving patients more control over their end-of-life care decisions.The medical system continues to focus on aggressive treatment at the end of life, despite the fact that most Americans now say they would prefer to die at home without life-prolonging interventions.
“More than 80 percent of patients say that they wish to avoid hospitalizations and high-intensity care at the end of life, but their wishes are often overridden....“Patients’ voices are often too feeble and drowned out by the speed and intensity of a fragmented health-care system,” Periyakoil said.
• These are the end-of-life treatment options you can typically request or deny on your medical orders for life-threatening situations along with the specific options on a Maryland MOLST (my current home state)
1. CARDIOPULMONARY RESUSCITATION (CPR)
The choices in Maryland are, if cardiac and/or pulmonary arrest occurs, whether to conduct CPR or not, if the patient's medical situation calls for it; whether or not to intubate (DNI meaning Do Not Intubate); whether to provide limited ventilatory support with CPAP or BiPAP (a relatively new option, far less invasive), or whether simply to allow natural death to occur ("do not resuscitate," or DNR, and "do not intubate" or DNI).
"The American Heart Association reports that conventional CPR can cause fracturing of ribs and/or the breastbone (sternum) in at least one third of cases. However, they also report that "the chance of surviving an out-of-hospital cardiac arrest is near zero for a victim who does not immediately receive high-quality chest compressions...followed by additional therapy within minutes."~ I've quoted from Everplans on the risks on this list.
2. ARTIFICIAL VENTILATION
The choices in MD are
whether or not to use intubation and artificial ventilation indefinitely, if medically indicated;
whether to try them as a limited therapeutic trial (with a specified time limit);
whether to use CPAP or BiPAP (see article below), as medically indicated, with a time limit;
or Do not use any of those procedures (and allow natural recovery or death).
"Apart from being uncomfortable and impairing the ability to speak, The National Heart, Lung and Blood Institute reports that it may lead to infections (the most common being pneumonia), lung damage, and damaged vocal chords."~ Everplans (providing the risks on all these)
3. BLOOD TRANSFUSION Give any blood product medically indicated, or Do not give any blood products.
According to The Center For Disease Control and Prevention (CDC): "Negative side effects of blood transfusion therapy are uncommon but can include blood transfusion reactions, infections, the development of red blood cell antibodies, and iron overload in different organs of the body."
4. HOSPITAL TRANSFER: If yes, allowed, under what conditions; if no, "treat with options available outside the hospital" (for example, hospice care).
5 MEDICAL WORKUP: Perform any medical tests called for, or only "limited medical tests necessary for symptomatic treatment or comfort," or do not perform any medical tests for diagnosis or treatment.
6 ANTIBIOTICS. 6a) Use oral, intravenous, or intramuscular antibiotics, as medically indicated;
6b) use oral antibiotics but not intravenous or intramuscular antibiotics;
6c) May use oral antibiotics only when indicated for symptom relief or comfort; or
6d. Do not treat with antibiotics.
According to the CDC, while the benefit of antibiotics has been enormous, "these drugs have been used so widely and for so long that the infectious organisms the antibiotics are designed to kill have adapted to them, making the drugs less effective. People infected with antimicrobial-resistant organisms are more likely to have longer, more expensive hospital stays, and may be more likely to die as a result of the infection."
7 ARTIFICIALLY ADMINISTERED FLUIDS AND NUTRITION. (Tube feeding, or feeding tube) Comparable four options for "artificially administered fluids and nutrition," including no artificially administered flud or nutrition. (This is not the same as allowing or not allowing a patient to eat real food or drink liquids, if they wish to and can.)
"The possible negative side effects include aspiration (inhaling the liquid food into the lungs), organ puncture, and infection."~Everplans
8 DIALYSIS. May give chronic dialysis for end-stage kidney disease if medically indicated, or may do so for a limited period (specified), or "Do not provide acute or chronic dialysis."
"Depending on the type of dialysis you receive possible side effects include infection, hernias, and low blood pressure."
9 OTHER ORDERS. As desired.
The Maryland form requires the signature of a physician, nurse practitioner, or physician assistant.
• Intubation and Mechanical Ventilation (YouTube video shows how the process works) You may receive endotracheal intubation and mechanical ventilation if you are in an emergency situation involving severe respiratory problems or if you are having general anesthesia during a surgical procedure. If you have severe respiratory problems, the oxygen levels in your blood may drop too low, or the carbon dioxide levels may rise too high. Either of these conditions can result in damage to your vital organs, including your heart and brain. Under these circumstances, you may need additional oxygen or breathing support through mechanical ventilation. (Do read Erika RN-BC's comments, which further explain the process.)
• Back to Life: COVID Lung Transplant Survivor Tells Her Story (Christine Herman, Side Effects Public Media, KHN, 8-14-2020) A ventilator story that might both scare and encourage you, that something so awful could happen and that there might be a positive outcome.
• Aggressive Care Still Common for Dying Seniors, Despite Hospice Uptick (Alvin Tran, Shots, NPR, 2-5-13) "While there is greater access to hospice services, there's also more ICU, more repeat hospitalizations, and more late transitions in the last three days of life," says gerontologist Joan Teno. "The good news is that we are referring to hospice. The bad news is we're referring to hospice in the last hours of life." Hospice use at the time of death increased from nearly 22 percent in 2000 to 42 percent in 2009, but short stays of three days or less in hospice care went from 22 to 28 percent. About 4 in 10 of those short stays came after time in a hospital ICU.
“Our fee-for-service system has probably resulted in overutilization of care.”
• National POLST website. You can click on a state (on its map) to learn about that state's POLST program. Some states, such as Maryland, have MOLST programs, which is comparable.
• End-of-life planning during COVID-19 (Compassion and Choices) Most people who get COVID-19 will survive, especially those in healthy condition, but "the percentage who die are often dying lonely, isolated deaths. Planning in advance could help ensure that you get care consistent with your values and priorities." If you have the disease or fear getting it, ask yourself the questions posed on this site.
Advance directive (end of life treatment) for patients in dementia
• With Dementia, More is Needed than a Boilerplate Advance Directive (Katy Butler, The Conversation Project, 2-25-19) "Our family had seen advance directives in black and white terms, as a means of avoiding a single bad decision that could lead to death in intensive care, “plugged into machines.” But given that most people nowadays decline slowly, a good end of life is rarely the result of one momentous choice. In the process of researching my new book, The Art of Dying Well, I’ve met many other people who’ve agonized over similar micro-decisions, such as whether or not to allow treatment with antibiotics, or a feeding tube, or a trip to the emergency room, for a relative with dementia....I believe that “comfort care” is what I want if I develop dementia. I have written the following letter —couched in plain, common-sense language, rather than medicalese or legalese — as an amendment to my advance directive." The letter that follows starts with:
— "I believe that “comfort care” is what I want if I develop dementia.
— Please ask my medical team to provide Comfort Care Only.
— Try to qualify me for hospice.
— I do not wish any attempt at resuscitation. Ask my doctor to sign a Do Not Resuscitate Order and order me a Do Not Resuscitate bracelet from Medic Alert Foundation."
— And so on, with quite a few additional details. You can find that here (Adapted from The Art of Dying Well: A Practical Guide to a Good End of Life, by Katy Butler © 2019. Reprinted with permission of Scribner.)
• Supplemental Advance Directive for Dementia Care (SADD) (Final Exit Network) "Final Exit Network (FEN) has created a new advance directive (AD) designed to prevent dying people from being kept alive against their wishes, long after dementia has eradicated their former selves.
"What’s more, if necessary, FEN will go to court in an effort to set a legal precedent ensuring that Voluntarily Stopping Eating and Drinking (VSED) is always available to those who sign the Supplemental Advance Directive for Dementia Care (SADD) or a similar AD.
"This SADD document, and the drive to ensure that it is legally binding, has been on our agenda for some time. We recognized the growing crisis surrounding the explosion in Alzheimer’s and other forms of dementia, because no state that offers Medical Aid in Dying (MAiD) accommodates patients who lack mental capacity when it is time to receive assistance."
• Diagnosed with dementia, she documented her wishes for the end. Then her retirement home said no. (JoNel Aleccia, WashingtonPost, 1-18-20) In 2018, after two brain hemorrhages, Susan Saran conferred with a lawyer and signed an advance directive for dementia, a controversial new document that instructs caregivers to withhold hand-feeding and fluids at the end of life to avoid the worst ravages of the disease. In a letter, lawyers told Saran that the center is required by state and federal law to offer regular daily meals, with feeding assistance if necessary. No provision exists, the letter said, for “decisions to refuse food and water.” See also Advance Directive for Dementia (End of Life Choices) An Advance Directive for Receiving Oral Food and Fluids in Dementia (for New York)
• Tools to Finish Strong (Compassion & Choices) Addresses planning your end-of-life care at every stage, even after a dementia diagnosis with C&C's Dementia Values and Priorities Tool and Dementia Decoder.
• Despite Advance Directive, Dementia Patient Denied Last Wish, Says Spouse (JoNel Aleccia, KHN, 8-21-17) An Oregon case underscores the complexity surrounding the use of advance directives for people with Alzheimer’s disease and other dementias. These directives generally allow named agents the power to withdraw artificial hydration and nutrition in the form of feeding tubes, for instance. But when that same nourishment is offered by hand, several states, including Oregon, draw a line. In the Oregon case, a lawyer argued that Nora Harris's directive doesn’t specifically mention food and drink presented by hand. Because she now opens her mouth and swallows when food is offered, she has, in essence, changed her mind, he said in a court document. Her husband, Bill Harris, said that opening her mouth is a reflex, an automatic response to six decades of habit. Oregon’s ombudsman on long-term care said Nora Harris’ advance directive wasn’t specific enough to advise Fern Gardens staff to withhold food and water. “Our concern was just focused on the administrative rule,” said the court-appointed lawyer representing Nora. “If the rule exists to prevent a facility from committing elder abuse, our focus was on what the rule required. The rule requires the resident be cued with food and they have the choice of eating or not eating.” "We have to feed them until they stop opening their mouths," says Fern Gardens administrator Lynn Rawlins.
• Alzheimer’s Disease and Dementia Mental Health Advance Directive (End of Life Washington). "This first-of-its-kind advance planning document allows people coping with Alzheimer’s disease and dementia to document their wishes about the inevitable challenges related to living with these illnesses. Even if this directive is not legal where you live, you can still use it to document your wishes and provide a guide for your family, health care providers, long-term care providers, and others." Also available on that site: Alzheimer's Disease and Dementia: Maintaining Dignity and Control of the End of Life (Advice about Alzheimer’s, the concept of allowing a natural death, and the benefits of hospice care) and Alzheimer's Disease and Dementia Advance Directive.
• Dementia Provision: Advance Directive Addendum (Compassion and Choices)
• Diagnosed with dementia, she documented her wishes for the end. Then her retirement home said no. (JoNel Aleccia, Washington Post and Kaiser Health Network, 1-18-2020) Susan Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. After suffering two brain hemorrhages, Saran signed an advance directive for dementia, a controversial new document that instructs caregivers to withhold hand-feeding and fluids at the end of life. But now, Sarah is fighting with her retirement community over her right to determine how she’ll die. Such a fight could ensnare millions of Americans with dementia in coming years.
This is what Compassion and Choices recommends in that situation: There is no question that the dementia directives are imperfect; however, they do prove to be valuable in many ways that were not discussed fully in the article.
Their recommendation, if at all possible, is that you:
1) Fill the dementia directive out so that you have clearly documented what you want. (See Dementia Provision, above)
2) Make sure your health care proxy, family and doctor know what you want and will support you.
3) When you are interviewing facilities, bring a copy with you and get them to confirm IN WRITING that they will honor your wishes. Use that as a negotiating tool.
4) If you can't find a facility that will honor it (which is quite possible), then arrange with your family that when you hit the point that you want to forgo feeding that you can be discharged from the facility to one of their houses. You can then go onto hospice care and get a failure-to-thrive diagnoses by working with the doctor that you previously identified to support you.
5) People are able to use the dementia directives when they are at home much more readily than when they are in a facility.
6) Keep in mind that while the facility may not support you with stopping food and hydration, many will support your desire to stop other treatments. So if you can't be discharged home, your health care proxy can help to facilitate a peaceful end by making sure your pneumonia is not treated, getting them to turn off your pacemaker, etc. But again, you want to get them to tell you in IN ADVANCE and IN WRITING that they will honor these wishes.
7) If you get a facility to support the options you want IN WRITING and then they will not honor them, your health care proxy should be instructed to contact our legal office. Those are the kinds of cases that we will take on to establish rights. But we have to be able to show a breach of contract so the IN WRITING is important.
Documents and information to
have available in an easy-to-find place
Personal Information
• Names, phone numbers, and email addresses of doctors
• List of medications taken regularly (and doses) and where prescriptions are filled
• A medical history of you (as described by Milly Dawson, St. Petersburg Times)
• Location of living will
• Names, phone numbers, and email addresses of religious contacts
• Names, phone numbers, and email addresses of close friends and relatives
• Information for obituary, such as place and date of birth, country of citizenship, names of spouses, schools attended and levels for which you got degrees, places employed and career achievements, memberships in groups and awards received, books published, movies made, and so on.
Financial and Legal Information
• Names, phone numbers, and email addresses of lawyers and financial advisors
• Names, addresses (especially of your legal residence), phone numbers, email addresses, date and place of birth, and Social Security numbers of everyone named in your will and other documents, and everyone important in your life, for your executors and guardians of minor children.
• Location of all vital and legal documents (including birth and death certificates, adoption records, prenuptial agreements, marriage certificates, divorce decrees, military records, immigration and citizenship documents, property deeds, recent tax returns, wills).
• Details about principal income and about your retirement savings accounts and other assets, including names, addresses, phone numbers, and social security numbers of principal beneficiaries.
• List of employers and dates of employment.
• Education and military records.
• Details about your debts (especially to whom and how much). Include mortgages, loans, other debts. And proof on debts paid.
• List of property you own, with values (include real estate, vehicles, jewelry, furniture, other assets)
• List of jointly owned property, and names of co-owners.
• Location of all vital and legal documents (including birth and death certificates, adoption records, prenuptial agreements, marriage certificates, divorce decrees, military records, immigration and citizenship documents, property (housing, land, and cemetery) deeds, vehicle titles, recent tax returns, do-not-resuscitate orders (DNRs), wills and living wills and related documents).
• A list of all financial assets and accounts, with bank account numbers and branch locations.
• A master list of all your accounts (savings, checking, credit card, stocks, bonds, mutual fund shares, other investments, escrow mortgage, insurance, frequent flier accounts, etc). List each institution, type of account (checking? savings? money market?), owner or policyholder (you? you and spouse? you and child?), account number, contact information for institution, where certificates are.
• A list of where you keep all pension documents, and folders on IRAs and 401(k) accounts
• Proof of loans made and debts owed (plus details on who and where)
• A list of computer user names, access codes, and passwords, or instructions on how to find them.
• Details on all forms of insurance (life, health, dwelling, car, etc.).
• A list of safe-deposit boxes, with an inventory of the contents. List all irreplaceable valuables (jewelry, heirlooms, photo negatives) and critical documents (marriage license, birth certificate, divorce papers, stock and bond certificates) that are stored under lock and key and photocopy the documents for your home office files.
Also helpful:
• Essential Document Locator Checklist (A Place for Mom)
• Being an organized executor (Unclutterer) An invaluable checklist, by categories.
• The 25 Documents You Need Before You Die: (PDF, from Wall Street Journal article)
End-of-Life Financial Planning
• What to Do When You’re Bad at Money (Tim Herrera, NY Times, 8-27-18) Personal finance management is a concrete, learnable skill. Here’s where to start.
• BenefitsCheckup (National Council on Aging)
• Thinking Ahead Roadmap (Univ. of Minnesota and AARP) “So much of elder financial exploitation might be prevented if individuals as they age took matters into their own hands and set up guardrails of protection around their money.” Choose someone you trust to be your financial advocate as you age, particularly if you are likely to experience cognitive declined.
• We Went to a Steak Dinner Annuity Pitch. The Salesman Wasn’t Pleased. (Ron Lieber, NY Times, 11-30-18)
• Protecting Older Investors: 2009 Free Lunch Seminar Report (Lona Choi-Allum, AARP, Nov. 2009) Often times, those who attend free lunch seminars have no idea that they are potential targets of financial fraud. Attendees go to these seminars hoping to learn about investment strategies, but instead are sometimes given sales pitches to purchase financial products that are fraudulent or unsuitable. Be aware of the possible dangers of attending free lunch seminars. See What to Listen For at Free Lunch Investment Seminars (AARP). As you attend, fill it in, and mail a copy later to the AARP department listed at the bottom of the form.
• BrokerCheck. Check this online central database for black marks against stockbrokers you are thinking of working with or hosts of "free seminars." State insurance departments also maintain such lists, says Ron Lieber of the Times.
• What You Should Know About Credit Scores (Joshua Rosenblat, NY Times, 7-23-17) There are over 2,500 benefit programs available nationwide. Find out what benefits may be available in your area.
• How to Navigate the Complicated World of Credit Card Points (Lucas Peterson, NY Times, 4-11-18) Credit card points are generally more valuable than points or miles attached to a specific airline or hotel group. The reason? Flexibility.
• Why it might not be a good idea to combine a mortgage that’s almost paid off with a home-equity loan (Ilyce Glink and Samuel J. Tamkin, WaPo, 8-27-18)
• What you need from your lender to prove you paid off your mortgage (Ilyce Glink and Samuel J. Tamkin, WaPo, 7-31-18)
• What I Learned From Tracking My Spending for a Month (Kristin Wong, NY Times, 11-28-18) Track every expense, every day, for a month. Write down the things you are tempted to buy, and the feelings and justifications associated with them. Figure out what you're tempted to spend that you can resist--and save more for the future.
• Financial Planning 101: How To Get Paid Incredibly Well For Being Lazy (Charles Rotblut, Forbes, 10-2-15)
• Countdown to Retirement: A Five-Year Plan (Peter Finch, NY Times, 7-6-18)
• Getting Married? Forget Sweet Nothings; Let’s Talk About Money (Paul Sullivan, NY Times, 4-27-18)
• I.R.S. Is Raising 401(k) Contribution Limits in 2019 (Ann Carrns, NY Times, 11-9-18) The Internal Revenue Service announced this month that the employee contribution limit for 401(k) and similar workplace retirement plans will be $19,000 next year, up from $18,500. With 401(k) plans, workers save and invest part of their paycheck before taxes are taken out. The money isn’t taxed until it is withdrawn from the account. Workers who are 50 or older also can make an extra $6,000 in “catch-up” contributions, an amount that isn’t changing for 2019.
Wills, trusts, legacies, and estates
What you need to know about inheritance and leaving a legacy
---Wills
---Estate planning
---Living trusts, revocable trusts, and special needs trusts
---Power of attorney, conservatorships, and guardianships
---Planning, handling, and protecting your digital estate
---Settling an estate (getting through probate, etc.)
---Inheritance: Common questions and problems
---Books about inheritance
An estate plan covers the scenario of “what happens when I die." This assumes you have assets left over. To cover the scenario of "what happens if I live" (in particular, what happens if I live and am not healthy and must depend on caregivers to take care of me and the cost of an assisted living or nursing home facility is more than I can afford) , you may need an elder law attorney.
• Wills, Trusts, & Estates, an extremely useful page for the public by National Paralegal College (NPC), with definitions and explanations for various aspects of estate planning (including succession and disinheritance); federal wealth transfer taxes; execution, validity, & components of wills; construction of wills; estate administration; the creation, modification, & termination of trusts; charitable trusts; and trust administration. (Thanks, Lauren Caldwell, for this link.)
WILLS
• 10 Things You Should Know About Writing a Will (Brett Widness, AARP, May 2012)
• Making a Will (MetLife's succinct explanations include a checklist. Here are the basic elements generally included in a will:
- Your name and place of residence
- A brief description of your assets
- Names of spouse, children and other beneficiaries, such as charities or friends
- Alternate beneficiaries, in the event a beneficiary dies before you do
- Specific gifts, such as an auto or residence, you want to leave to someone
- Establishment of trusts, if desired
- Cancellation of debts owed to you, if desired
- *Name of an executor to manage your estate (including paying debts and taxes and distributing what's left over as specified in your will)
- *Name of a guardian for minor children
- *Name of an alternative guardian, in the event your first choice is unable or unwilling to act
- Your signature
- Witnesses' signatures.
* These three are especially important. You may also want a living trust (which is different from a living will) if you want to avoid the cost and headache of probate court, which determines according to state law how someone's assets will be disbursed.
• Have You Named Your Beneficiaries? It’s Easy, and Here’s Why You Should (The Ticker Tape, TD Ameritrade) Naming your beneficiaries controls how your assets will be distributed. You also have to name primary and secondary beneficiaries for your retirement accounts. Those beneficiary forms supersede heirs named in wills or trusts. After major life events, review and update your designations.
• FreeWill (Compassion & Choices) An online platform that can help you write your legal will in 20 minutes or less at zero personal cost. While you create your will, you can plan for your assets, dictate future health care decisions, and even make a bequest to the causes you care about. If you prefer to finalize your plans with an attorney, reduce lawyer time and fees by using this resource to document your wishes first.
• Prince Needed a Will, but Maybe You Don’t (Paul Sullivan, Wealth Matters, NY Times, 5-6-16) "When someone dies without a will — known legally as dying intestate — there are laws in each state that govern how the assets are distributed and to whom....Wills govern only certain types of assets. Most people who are not wealthy have more of their money in assets that pass to heirs through beneficiary designation forms, not wills. These include retirement accounts, 401(k) plans and life insurance. Other assets like bank accounts or homes can be jointly owned or have provisions to transfer ownership to an heir after the person’s death. In these cases, the beneficiary forms overrule the will.
“The average American who would die intestate can deal with the majority of his assets with beneficiary designation forms,” said James A. Cox III, managing partner at the Harris Financial Group in Richmond, Va. “But a higher percentage of people who don’t have a will have probably improperly filled out their beneficiary designation forms. That’s a far greater problem than not having a will.” Make sure those assets are properly titled to go directly to your heirs (and update to take ex-spouses and late parents off the titles).
• How do I find someone to do my will? Read Michelle Singletary’s answer. (Washington Post, 11-17-23) Answers to reader questions on estate planning and other personal finance issues. If you die without a will, state law dictates the disposition of your home and other possessions. Your assets could be given to a relative you don't like or haven’t spoken to in years. Don’t assume that your children, siblings or parents will distribute your assets as you would have wanted. The main takeaway: Make a plan now.
• 7 common mistakes to avoid when naming your beneficiaries (Nina Mitchell, WTOP, 2-21-18) Definitely read this!
• Authors' wills, trusts, and estates
• Willing, an online estate planning service that allows consumers to prepare last will and testaments, living wills, revocable living trusts, powers of attorney, and home transfer deeds. Less expensive than Rocket Lawyer. See Online Wills: How to Know if an Online Will Service is Right for You ( Michelle Kaminsky, Legal Zoom)
• Will You Leave a Fair Will for Your Children? (Jane Bryant Quinn, AARP Bulletin, 5-3-12). How to preserve family harmony if one child gets more.
• Making Wills Easier and Cheaper With Do-It-Yourself Options ( Paul Sullivan, NY Times, 9-7-18) "Mr. Ellis used a site called FreeWill, which begins the estate planning conversation with options around charitable giving. But there are many online competitors, including Rocket Lawyer and LegalZoom, that offer services to create estate plans for little or no money. Some offer a lawyer to talk to free of charge....FreeWill costs its users nothing, but it makes its money from the charitable institutions that pay a fee for using the FreeWill service to reach out to donors."
• Letter of Final Instructions: Why Writers Should Have One (Julian Block, AccountingWeb, 8-17-15) "Be aware of twists and turns in the tax rules for writers and their heirs. For instance, the IRS uses one set of rules when it calculates how much to exact from you and other writers on amounts received as royalties and other payments for books, magazine articles, plays, photographs, or other kinds of creative efforts. But the IRS invokes other rules that ask for less when those kinds of payments go to writers' heirs."
• Why Would a Person Challenge a Will? (Dennis M. Haase, Esq., Einhorn Harris Tax Law blog, 8-7-17) On standing to challenge a will, procedure to challenge a will, and grounds to challenge a will (1. Failure to Comply with Statutory Formalities for Executing a Will, 2. Lack of Testamentary Capacity, and 3. Undue Influence).
• Wills and Testaments of Famous (TrueTrust.com). I looked out of curiosity, but found some helpful and interesting clauses in these many wills.
• Wills of the Rich and Famous (Living Trust Network)
• The 6 Most Controversial Celebrity Wills: Michael Jackson, Leona Helmsley, Princess Diana and More. (Trials & Heirs.com, 1-18-10)
• 8 Great Celebrities With Unusual Wills & Last Testaments (Brittany Lewis, Global Grind, 8-10-12). For example, Pringles founder/owner Fred Baur wanted to be cremated and buried in a Pringles can.
ESTATE PLANNING
Review your estate plan whenever these changes take place: Marriage, divorce, the death of a spouse or partner, remarriage, the birth or adoption of a child ("when new children, friends, or relatives enter the picture"), the death of a beneficiary, illness or disability, a substantial increase in assets or income ("you come into money,") moving to another state, changes in the law, changes of heart, changes in how you feel about the charities you give money to.
"Both federal estate tax laws and the trust and probate laws of states change on a regular basis. In addition, HIPPA requirements are consistently being updated. Whenever this happens, your estate plan is at risk." ~Steve Cook, 9 Life Changes That Require An Estate Plan Review.
• A Primer on Estate Planning as a Writer (Leonard D. Duboff and Sarah J. Tugman on Jane Friedman's blog, 3-4-19) Explains basic terms. For example, an estate can be "either trust-based or will-based." If properly drafted and "ambulatory," a will can change to apply to property acquired after the will is written. If revocable, "it can be changed or canceled before death." A trust is a legal arrangement by which one person (the trustee) holds certain property for the benefit of another (the beneficiary). A "testamentary trust" is created by will, must be probated along with the will, and in some states probate can be lengthy and expensive. The authors explain the advantages of a"trust-based plan" over a "traditional will-based plan" (e.g., avoiding probate, ensuring privacy) and the use of a life insurance trust to "guarantee liquidity." From their book, The Law (in Plain English) for Writers. See also Your literary estate.
• Estate Planning 101 Part 1 and Part 2. An excellent explanation of what (and why) to consider when planning what you want to happen to you and to your things when you become incapacitated and/or when you die. Attorney Harry Scaramella on video: You do this for your family so they don't have to make life or death decisions at an emotional time in YOUR life. These documents keep you in control at a time when you might not be able to communicate your own decision to either your personal health care professionals, EMT's or what if... out of state emergency situations.
• 5 Estate Planning Lessons From Aretha Franklin’s Will (John Waggoner, AARP, 7-12-23) A handwritten document found in the late singer’s couch is ruled valid.
• Estate planning FAQs (American Bar Association on estate planning, wills, revocable trusts, probate, power-of-attorney, living wills and health care proxies, planning for retirement benefits, guidelines for executors and trustees, and estate, gift, and GST taxes)
• How Did a Minister Come to Own Hundreds of Edward Hoppers? (Kevin Flynn, Julia Jacobs and Robin Pogrebin, NY Times, 10-19-22) An exhibition at the Whitney Museum of American Art exploring Hopper’s vision of New York has also rekindled questions about how a Baptist minister came to own so much of his art.
• National Academy of Elder Law Attorneys (NAELA) Elder Law planning seeks to preserve your money, income and assets, to be used for your benefit and care while you're still alive. Estate planning focuses on distribution of your assets, typically in a tax-advantaged manner, after you die.
• National Association of Estate Planners & Councils (NAEPC)
• The Executor's Guide: Settling a Loved One's Estate or Trust by Mary Randolph J.D. "Even when using an attorney to navigate the maze, this book provides detailed, easy-to-follow explanations for what to expect, and how to be better organized."~A review on Amazon.
• The Cornerstones of an Estate Plan: The 4 documents every adult should have (Jonathon D. Pond, AARP, March 2009) Every adult should have a will, a durable power of attorney, an advance directive, and a letter of instructions.
• A Report: Family, Love, and Dying Twice (Ann Busch, Discretionary Love, 6-30-22) A cautionary tale about the pitfalls of writing about family. Ann and her sister agreed to collaborate, to merge their two memoirs in one: “How Will We Know if She Is Dead?” Her sister died, without documenting her wishes about the collaboration in a collaboration agreement or an estate plan. The family blocked publication.
• EstateExec Online software that generates a list of tasks to help an executor do everything needed with an estate after someoen dies. with automated guidance, customized for estate details, and automated financial tracking and calculations. See Sample tasks.
• What Estate Planning Documents should I have? (Elder Care Matters)
• A to-do list for estate planning (AARP)
(And don't forget what to do about your digital estate (your email, Twitter, Facebook, Google, etc. accounts--see section below on planning for your digital estate).
• State Your Intentions With a Letter of Instruction
• Disability Planning (ElderLawAnswers)
• What Good Is It If We Don't Get Along? --or Planning for Family Harmony Verlyn De Wit, Western Dairy Business magazine). Excellent at pointing out fairness-unfairness pitfalls and ways to get the most out of inheritance money.
• St. Jude Fights Donors’ Families in Court for Share of Estates (David Armstrong and Ryan Gabrielson, ProPublica, 3-21-22) Most Americans know St. Jude Children’s Research Hospital through television advertisements featuring Hollywood celebrities asking for contributions or the millions of fundraising appeals that regularly arrive in mailboxes across the country. But a select group of potential donors is targeted in a more intimate way. Representatives of the hospital’s fundraising arm visit their homes; dine with them at local restaurants; send them personal notes and birthday cards; and schedule them for “love calls.” When one spouse dies and the surviving spouse changes their will, St. Jude's sometimes challenges families in court over the assets their loved ones leave behind, in battles that can be lengthy and costly, spending donor money on litigation and diminishing inheritances.
• A to-do list for estate planning (AARP)
(And don't forget what to do about your digital estate (your email, Twitter, Facebook, Google, etc. accounts).
• 5 Things You Must Know as the Executor of an Estate (Redfin)
• Divide Your Estate — Not Your Family (TIAA-CREF) Estate tools to address problems of sibling rivalry, disposition of family valuables, fairness vs. equality, blended families, troubled beneficiaries, principal vs. income, and how to pick the right trustee. For example: " In some situations, it may be desirable to avoid circumstances where a parent is forced to ask a child for money, especially when the money came from the parents in the first place. It might be better for all concerned to choose an impartial trustee."
• Where There's a Will...Some Potential Pitfalls to Avoid When Estate Planning (Stan Hinden, WaPo, 4-20-99) After parents die, the children are not just the parents' children anymore. "They're people dividing money....What the parents should have done was to equalize their spending on their children during their lifetime. Parents who occasionally help a child financially tend to forget about unequal treatment. But rest assured, your children haven't forgotten. And they're keeping score."
Second marriages, especially those involving widows and widowers with grown children, can be disasters waiting to happen. All too often, inheritances wind up in the wrong hands because of poor planning, failure to use the right legal tools or just plain greed.
• Beyond the Grave: The Right Way and the Wrong Way of Leaving Money to Your Children (And Others) by Gerald M. Condon and Jeffery L. Condon
• Estate Planning: Leaving a Home to Heirs While You’re Still Alive (Kaya Laterman, NY Times, ) Since your home is often your most valuable asset, there are scenarios where it makes sense to create a trust for the property before you die. "A simple will works best when the potential heirs of a home all get along and the person chosen to be the executor of the estate lives in the same state where the home is. But if there are multiple heirs in different financial brackets, disagreements may break out over whether to keep or sell an inherited home. In such cases, experts suggest setting up a trust."
• Love, Marriage and Uh-Oh Adult Children (Bonnie D. Kupperman, My Senior Portal) Plans for elders to remarry late in life often throw your adult children into strife. Do not say “my children would never fight.” Prepare for the worst by planning, and telling your children what to expect. Do not assume that the spouse of a second marriage will leave your money to your children should you die first. Get good legal and financial advice.
• End-of-Life Decision-Making (Family Caregiver Alliance)
• Disability Planning (ElderLawAnswers)
ESTATE PLANNING FOR YOUR ANIMALS
ESTATE PLANNING FOR PETS
• Estate Planning for Pets: Provide For Your Cat in Case Something Happens to You (Ingrid King, The Conscious Cat,1-15-14) Choose a caregiver and discuss expectations; consider a humane organization as backup; legalize the arrangement; additional precautions to provide for continuing care.
• Who Will Care for Your Cats if You Can’t Get Home in an Emergency? (Conscious Cat, 6-1-16)
• Even Your Pet Needs an Estate Plan (Tracy Craig, Kiplinger, 2-17-22) Who will feed Fifi once you’re gone? It's something you should probably put in writing. There are three different ways to do that, some offering more protections than others: a will, a letter/memorandum, and a pet trust.
• Estate Planning for Pets (Peggy R. Hoyt, Kiplinger, 10-25-21) Where would your pets go if something happened to you? Who would take care of them, and how would their costs be covered? A pet trust could be the answer.
• What Happens to Your Pets When You Die? – Estate Planning With Cats & Dogs (Moneycrashers) A pet trust is like a company that exists for one specific purpose: to pay for the needs of your pet, from essentials like food and veterinary care to creature comforts like chew toys and warming vests. Details about how to set them up, and a word about their limitations.
• Estate Planning for Your Horses: Protecting Your Horses if They Outlast You (Hodgson Russ, attorneys)
LIVING TRUSTS, REVOCABLE TRUSTS, AND SPECIAL NEEDS TRUSTS
A living trust gives a designated person (a trustee) authority to hold, manage, and distribute property for you while you are alive and to distribute it when you die. This is not just for rich people. For this and the other legal and financial arrangements, you need sound advice from an expert. But it helps to understand as much as you can on your own first, as applied to your situation.
• What You Need to Know About Establishing a Trust Fund (MetLife) Most trusts are living trusts. They are created by the grantor during his or her lifetime. The majority of living trusts are living revocable trusts. This is when the trust can be revoked (ended) during the grantor’s lifetime.
The primary difference between assets in a will and in a living trust is that assets in a living trust typically avoid the need for probate court; the assets are already in the trust, so they can be transferred to your beneficiaries without waiting for a will to be carried out. Also, the terms of a funded living trust are generally more private than a will. MetLife's explanations of various other types of trust are clear and succinct.
• What is the difference between a revocable trust and a living trust? (Greg DePersio, Investopedia, 6-14-17) A revocable trust and living trust are separate terms that describe the same thing: a trust in which the terms can be changed at any time. The terms of an irrevocable trust, in contrast, are set in stone the minute the agreement is signed. Except under exceedingly rare circumstances, no changes may be made to an irrevocable trust.
The disadvantages of a revocable trust: "Because the owner retains such a level of control over a revocable trust, the assets he puts into it are not shielded from creditors the way they are in an irrevocable trust. If he is sued, his trust assets can be ordered liquidated to satisfy any judgment put forth. When the owner of a revocable trust dies, the assets held in trust are also subject to both state and federal estate taxes." See Estate Tax.
• The difference between a living trust and a will (Betsy Simmons Hannibal, Nolo) Revocable living trusts and wills both allow you to name beneficiaries for your property. Beyond that, they are useful for different purposes. For example, most people use living trusts to avoid probate. But living trusts are more complicated to make, and you can’t use a living trust to name an executor or guardians for your children. You need a will to do those things. Chart compares aspects of living trusts and wills.
• What is the difference between a revocable trust and a living trust "The two basic types of trusts are a revocable trust, also known as a revocable living trust or simply a living trust, and an irrevocable trust....A revocable trust and living trust are separate terms that describe the same thing: a trust in which the terms can be changed at any time.... The advantages: The owner of a revocable trust may change its terms at any time. He can remove beneficiaries, designate new ones and modify stipulations as to how assets within the trust are managed." The disadvantage: "Because the owner retains such a level of control over a revocable trust, the assets he puts into it are not shielded from creditors the way they are in an irrevocable trust. If he is sued, his trust assets can be ordered liquidated to satisfy any judgment put forth. When the owner of a revocable trust dies, the assets held in trust are also subject to both state and federal estate taxes."
• Living trusts and wills, compared (Nolo)
• Living trusts (Nolo)
• Revocable living trusts (Nolo).
• Thinking about a living trust (Chris Farrell, Marketplace, APM, 4-5-12)
• The difference between a living trust and a living will (Lauren Rickert, Helium)
• Creating a living trust John Ventura explains things to Tess Vigeland, Marketplace Money, 6-21/22-2008
• Living Trust Offers: How to Make Sure They're Trust-worthy (Federal Trade Commission)
• Common Mistakes Made When the Elderly Attempt to Avoid Probate (Avvo--see article for explanations) Attorney David Goldman explains dangers of 1) Transferring a portion or all of a home to a family member (as with a life-estate deed, which avoids probate but can cause other unforeseen problems), 2) Enhanced life-estate deed, 3) Possible problems with an enhanced life estate deed, 4) Making gifts or donations to people, charities, or religious institutions, 5) Gifting to grandchildren, 6) Selling assets to family members for less than fair market value. 7) Transferring assets to a living trust. There are better ways to avoid probate and preserve eligibility for Medicaid. Work with someone who understands elder law and estate planning.
• Thinking about a living trust (Chris Farrell, Marketplace, APM, 4-5-12)
• Creating a living trust John Ventura explains things to Tess Vigeland, Marketplace Money, 6-21/22-2008
• Living Trust Offers: How to Make Sure They're Trust-worthy (Federal Trade Commission)
• What Is a Special Needs Trust? (Suzanne Rehmani, ElderCare Matters, 5-2-19) A Special Needs Trust (SNT), sometimes called a Supplemental Needs Trust, provides for the needs of a disabled person without disqualifying him/her from benefits received from government programs like Social Security and Medicaid.
• Understanding a Special Needs Trust and Its Benefits ( Julia Kagan, Investopedia)
"Key takeaways:
A special needs trust is a legal arrangement that provides access to funding to someone who is physically or mentally disabled or chronically ill.
This trust allows for the additional financial support of an individual without potentially jeopardizing the benefits provided by public assistance programs.
Public assistance programs like Social Security and Medicaid have certain income and asset restrictions and trust funding is not counted toward these qualifications."
• Special Needs Trusts (Nolo) Links to various aspects of and questions about special needs trusts. Like a will, a living trust can be used to fund a special needs trust that will become effective at your death. The trust document lists the trust property that should pass to the trust rather than directly to the beneficiary.
• Are Revocable or Irrevocable Living Trusts Useful in Qualifying for Medicaid? (Nolo) Most trusts, even irrevocable ones, no longer work to qualify an individual for Medicaid.
• Five Things You Should Know About Living Trusts (Estate Planning, Schomer Law Group, 7-15-21) H/T Sue Russell
• Durable Powers of Attorney and Revocable Living Trusts (Family Caregiver Alliance)
• Elder law (where to find legal help)
POWER OF ATTORNEY, CONSERVATORSHIPS, AND GUARDIANSHIPS
Some states use the term “guardianship” alone, some use “conservatorship” and still others use a combination: “guardianship / conservatorship.” And a few states use terms like, “Interdiction.” ~NASGA
• Why Not Just Use an Off-the-Shelf Power of Attorney Form? (Gregory Port, ElderCare Matters, 6-3-19) One size does not fit all.
• The Mysterious Patient in Room 23: The Hermit Baroness (George Rush and John Leland, Washington Post, 10-20-22) Birgit Thyssen-Bornemisza led a life of eccentric anonymity and shabby gentility. Then her money got cut off. Then she had a stroke. And not being "in the system" did not help her cause. Guardianship, which provides essential protection to many frail or incapacitated people, has also been criticized as overly intrusive, and its legal processes as secretive. Claude Pepper, the former chairman of the House Select Committee on Aging, once called it “the most punitive civil penalty that can be levied against an American citizen, with the exception, of course, of the death penalty.”
• Abuses in Guardianship of the Elderly and Infirm: A National Disgrace (9-27-89) A congressional briefing by Representative Claude Pepper on the abuses in guardianship.
• Conservatorship and Guardianship (Family Caregiver Alliance) See also Conservatorships and Adult Guardianships (Nolo) “When someone is no longer able to handle his or her own financial or personal affairs, the court can appoint an individual or professional to act on behalf of the incapacitated person. When a minor child is involved, it is generally called a guardianship. When an adult needs someone, it is called a conservatorship. However, states define these terms differently, and you need to consult an attorney in your state to determine what the laws are and how they impact your situation.
• How to Protect Yourself or a Loved One From an Abusive Guardianship (Emily Gurnon, Next Avenue, 5-25-16) Getting key legal documents in order is the best bet.
• Managing someone else’s money (Consumer Financial Protection Bureau) Millions of Americans manage money or property for a loved one who’s unable to pay bills or make financial decisions. To help financial caregivers, See also Guardianship Videos by State (American Bar Association)
• Britney Spears’s Conservatorship Nightmare (Ronan Farrow and Jia Tolentino, New Yorker, 7-3-21) How the pop star’s father and a team of lawyers seized control of her life—and have held on to it for thirteen years. For more than a decade she has been denied the right to make the most basic decisions about her personal and professional life, even as she has released four albums, headlined a global tour that grossed a hundred and thirty-one million dollars, and performed for four years in a hit Las Vegas residency. See also Britney Spears Quietly Pushed for Years to End Her Conservatorship (Liz Day, Samantha Stark and Joe Coscarelli, NY Times, 6-22-21) Confidential court records obtained by The Times reveal that the singer has urged changes to the arrangement that controls her life, and her father’s role in leading it. In the years since a judge gave the father of Britney Spears broad control over her life and finances, concerned fans have questioned how the court could continue to deem her unable to protect and care for herself despite the fact that she was still a performing pop star.
• Britney Spears fills a hole in her narrative (Jon Allsop, CJR, 6-24-21)
• National Association to Stop Guardian Abuse (NASGA) Useful resources.
• What Do a Living Will and Power of Attorney for Health Care Cover? (Nolo) Medical issues to address in your living will and power of attorney for health care.
• How to Avoid Guardianships & Conservatorships (James Ruggiero Jr., ElderCare Matters, 4-24-19) Guardianships and conservatorships can be an expensive legal process, and in many cases they are not necessary or could be avoided with a little advance planning.
• Q&A about Power of Attorney (AARP November 2008)
• Durable Powers of Attorney and Revocable Living Trusts (Family Caregiver Alliance)
• Wills, Trusts, & Estates, an extremely useful page for the public by National Paralegal College (NPC), with definitions and explanations for various aspects of estate planning (including succession and disinheritance); federal wealth transfer taxes; execution, validity, & components of wills; construction of wills; estate administration; the creation, modification, & termination of trusts; charitable trusts; and trust administration. (Thanks, Lauren Caldwell, for this link.)
• Will You Leave a Fair Will for Your Children? (Jane Bryant Quinn, AARP Bulletin, 5-3-12). How to preserve family harmony if one child gets more
• Keeping the Peace While Settling a Family Estate (Teri Cettina, Conversations, Wells Fargo Wealth Planning Center, 4-18-16) Yes, you can settle a family estate without fighting. Here's how.
• 10 Things You Should Know About Writing a Will (Brett Widness, AARP, May 2012)
• The Cornerstones of an Estate Plan: The 4 documents every adult should have (Jonathon D. Pond, AARP, March 2009) Every adult should have a will, a durable power of attorney, an advance directive, and a letter of instructions.
• Q&A about Power of Attorney (AARP November 2008)
• Living trusts and wills, compared (Nolo)
• Living trusts (Nolo)
• Revocable living trusts (Nolo). See especially Revocable Living Trusts v. Wills
• Conservatorship and Guardianship (Family Caregiver Alliance) See also Conservatorships and Adult Guardianships (Nolo)
• State Your Intentions With a Letter of Instruction
• A to-do list for estate planning (AARP)
(And don't forget what to do about your digital estate (your email, Twitter, Facebook, Google, etc. accounts).
• Disability Planning (ElderLawAnswers)
• End-of-Life Decision-Making (Family Caregiver Alliance)
A living trust gives a designated person (a trustee) authority to hold, manage, and distribute property for you while you are alive and to distribute it when you die. For this and the other legal and financial arrangements, you need sound advice from an expert.
• Thinking about a living trust (Chris Farrell, Marketplace, APM, 4-5-12)
• The difference between a living trust and a living will (Lauren Rickert, Helium)
• Creating a living trust John Ventura explains things to Tess Vigeland, Marketplace Money, 6-21/22-2008
• Living Trust Offers: How to Make Sure They're Trust-worthy (Federal Trade Commission)
Your literary estate
"Predictions are difficult, especially about the future." --Yogi Berra
• Your Literary Estate, Part One: Assigning a Literary Executor (Christopher Klim, The US Review of Books, 2-1-17) "Your heirs will have varying degrees of concern for your legacy, ranging from not-at-all through avarice to sincere compassion for your work. Get control of the process now....Your literary executor would optimally be someone who is both involved in the business of publishing and is familiar with you and your heirs. It could be an editor, agent, or fellow writer. He/She should understand both your work and intentions....Gover knew that his heirs would trust me and my eventual decisions, but I was powerless in managing his literary estate unless it was official. However, I learned that almost no one had information on this topic."
• Your Literary Estate, Part Two: Managing Your Work (Christopher Klim, The US Review of Books, 3-1-17) "Assigning a literary executor is not all about contract negotiation and oversight. It also involves handling your literary papers and letters....For the Eric Hoffer estate, his papers had already been stored at the Hoover Institute, but with regular rights inquiries, it was important to have access to existing contracts in order to help avoid copyright conflicts....In my experience, publishers will be intentionally unhelpful. They have a long history of hiding royalties from authors, as well as assuming rights that they had never obtained. Make sure your literary executor knows everything you do, so he/she can make the best decisions. Slapping a firm letter on a publisher with the power of an informed literary executor is better on any day than filing a lawsuit. The big publishers will out-wait and out-lawyer you every time."
• Estate Planning For Writers (Matt Knight, Sidebar Saturdays, 12-2-17) The advantages and disadvantages of wills and trusts, whether you need both an executor and a literary trustee, how to structure a literary estate.
• The Death of a Writer (Allison K Williams, Brevity's nonfiction blog, 6-4-19) Who is going to deal with your literary legacy, and what do you want done with your journals, family photos, genealogical research, story notes, complete and unfinished manuscripts, published works (who inherits the copyright?), treasured mementos, social media (wipes? or legacy status?), passwords and account numbers for whoever wraps up your estate? And do you want any old letters or evidence of love affairs preserved or destroyed?
• Important. And pass it on... (Neil Gaiman, A Simple Will,10-30-06) Download "A Simple Will" and fill it in for yourself.
• How to Fund a Living Trust With Royalties (John Stevens, LegalBeagle) A royalty is the right to receive financial compensation for a body of work that is used by a third party (e.g., for songs played on the radio, for books sold). A living trust is a common way to pass those rights at death. The main reason to create a living trust is to avoid probate
• My Life, Their Archive (Tim Parks, New York Review of Books, 5-21-14) 'For the author, needless to say, the lure is money. Large sums can be involved. The Harry Ransom Center at the University of Texas reputedly paid $1.5 million for J. M. Coetzee’s papers. The British Library more modestly gave £110,000 for the manuscripts of novelist Graham Swift, announcing as a special attraction “a tape recording of the answer phone messages he received on the night he won the Booker Prize.” ...But not only money. Any organization that spends a considerable sum on you will also have an interest in promoting your reputation. They don’t want to be accused of having thrown cash at a lemon. So there will be exhibitions, seminars, features of archived material.'
• Final Drafts: Selecting a Literary Executor (Lloyd Jassin and Ronald Finkelstein, CopyLaw.com, 2002) 'A General Executor will often be a spouse or other family member that does not have experience with literary matters. Therefore, you should consider entrusting the care of your papers, existing contracts and unpublished manuscripts to a Literary Executor. Keep in mind that being a Literary Executor can be a lot of work. By taking the time to carefully select a Literary Executor, you lessen the likelihood of intra-family disputes that could result in family members refusing to negotiate for the further exploitation of your works -- preferring instead to retire your copyrighted works from publication....While a family member may agree to work for free, attorneys and literary agents will most likely seek a fee of between 10% and 15% for new contracts they negotiate on behalf of the estate....In some instances, an author may create a lifetime (“inter-vivos”) trust and transfer literary assets to the trust. In this case, a trustee will be appointed to carry out responsibilities similar to an Executor. In such instances, the author appoints a "Literary Trustee" who acts in much the same manner as a "Literary Executor" would under a decedent's will....Authors with significant estates should meet with their attorney or accountant now to determine whether any lifetime planning can be employed to reduce the value of their estates at their death so that more assets can pass to their heirs.'
• Future of Borges estate in limbo as widow doesn’t leave will (Daniel Politi, AP, 4-5-23) "The rights to the works of the late Jorge Luis Borges, considered Argentina’s most internationally significant author of the 20th century, have fallen into limbo because his widow died last month without a will. Borges’ wife, Maria Kodama, devoted much of her life to fiercely protecting his legacy. She set up a foundation under the writer’s name, but did not detail plans for what should happen after she died, even though she was battling breast cancer....Borges died in 1986 at age 86 and left Kodama, a translator and writer whom he had married earlier that year, as his only heir. They never had children."
• The Works of Merton ( letter Robert E. Daggy and reply by J.M. Cameron, New York Review of Books, 11-22-79) In 1967, on the advice of friends and with the concurrence of his abbot, Merton decided to name Bellarmine College repository for his literary estate.
• Do You Need a Literary Executor? (Susan Spann, Writers in the Storm, 7-15-13) When do you need a literary executor (or trustee) to administer the copyright in your estate? "Copyrights aren’t like houses, or cars, or jewelry—assets which can be readily converted into cash and which require no ongoing business skills. Copyright management requires specialized skills which many heirs do not possess....The copyright management process can be confusing even for one heir and confrontational when many heirs are involved... The literary executor can be one of the heirs, or can be a professional hired (and often paid) to manage the copyrights on your heirs’ behalf....While the general executor’s job may be finished in about a year, the literary executor may continue to manage creative works on behalf of the author’s estate until the end of the copyright term."
• Orphan Row Update: Another Living Author, Two Books in Print, Literary Estates Held by Charities, Etc. (Authors Guild, 9-15-11) "Here’s what we can tell you about authors of some of the books that HathiTrust is scheduled to release for downloading by hundreds of thousands of students."
You'll find MORE MATERIAL ON ESTATE PLANNING AND YOUR LITERARY ESTATE
on my WRITERS AND EDITORS blog.
Your "professional will"
(who takes over your business or private practice)
I had not even considered this possibility when Pam Pacelli Cooper recommended the first three articles below as helpful for therapy practices. What similar kinds of steps should those of us who help others with their life stories or manuscripts take? What if you're a dentist? Speak up! I'll be watching for useful material, and welcome suggestions.
• Preparing Your Clients and Yourself for the Unexpected: Therapist Illness, Retirement, and Death (Ann Steiner, PhD, LMFT, The Therapist, Nov./Dec. 2011, published by the California Association of Marriage and Family Therapists, CAMFT)
• Professional Association Codes of Ethics and Guidelines On Retirement or Death of Therapist, or Sudden Closure of Practice (Ofer Zur, PhD, Zur Institute) What to cover, from various professional therapy associations.
• What To Do When a Therapist Dies (Allen Wilkinson, Psych Central, 2-3-17)
• Beyond the professional will: Are you prepared for the unexpected? (Berna G. Haberman, Counseling Today, American Counseling Association, 4-17-13)
• 5 musts for an effective succession plan (American Bar Association, Oct. 2018)
PLANNING, HANDLING, AND PROTECTING YOUR DIGITAL ESTATE
(your social media accounts, passwords to online accounts, etc.)Do one or two trusted friends or relatives (or your lawyer) have your computer passwords (for bank and other financial accounts, memberships, client contacts, etc.) so they can help you or your estate access them after a crisis or your death. If you live alone, chances are you have not set up a way for someone to handle your professional and personal accounts and contacts if you end up in a hospital or worse. In particular leave somene the passwords and other information they will need to access your computer, so if you are seriously ill or dying or dead, your family or best friends know how to get to what's on it. I am reminded of this partly because friends keep asking me who will take over my websites when I die! Time to make a list of who should be informed if...
• Plan Your Digital Legacy, and Update Often (Constance Gustke, Wealth, NY Times, 11-11-15)"Experts recommend making a thorough inventory of all online accounts and their passwords but not to include them in your will. Wills should not be changed frequently while online account information often is. Specify how you want each account handled if you die... Terms and conditions for each site can also be included. This inventory can then be stored in an encrypted file, safe or even with your attorney."
• Prompt 214. The Journal Dilemma “Like the journal itself, the question of what to do with them is deeply personal—and well worth contemplating.” Suleika Jaouad on making a plan for what becomes of your private writings, and who may be impacted by your choice. What about all those old letters?
• Equifax’s Instructions Are Confusing. Here’s What to Do Now. (Ron Lieber, NY Times, 9-8-17) You’ll need a credit freeze. You’ll need a fraud alert. And don’t expect Equifax to be much help.
• Equifax, Experian, TransUnion to remove some medical debt from credit reports (Kerry Dooley Young and Joseph Burns , Covering Health, AHCJ, 4-6-22)
• How Many Times Has Your Personal Information Been Exposed to Hackers? (Josh Keller, K.K. Rebecca Lai, and Nicole Perlroth, NY Times, 9-7-17)
• How tech platforms (Facebook, Instagram, Twitter, Google) handle a user's death (David McCabe, Axios, 8-10-19) Read this to see why you should plan ahead for what happens to your account when you die; who (when you're dead) can authorize "memorializing" and freezing your account with Facebook, Instagram, Twitter, or Google; and how social media might guess you are dead.
• Who Has Access to Decedents' Electronic Assets and Social Media? (Michael L. Fox, American Bar Association, 12-21-17)
• How to protect your information online (NY Times, 9-7-17). Companion piece to Equifax Hack Exposes Regulatory Gaps, Leaving Consumers Vulnerable (Tara Siegel Bernard and Stacy Cowley, NY Times, 9-8-17)
• Identify theft basics. (AnnualCreditReport.com). See also Federal Trade Commission advice on protecting from, and reporting on, identity theft.
• Security free basics (AnnualCreditReport.com)
• Data breach basics (AnnualCreditReport.com)
• Have You Written Your Google Will? (Will Oremus, Slate,4-11-13)
• Plan your digital afterlife with Inactive Account Manager (Data Liberation Blog, Unlocking your data from Google tools. 4-11-13)
• Memorialized Facebook Accounts (Facebook Help) What will happen to my Facebook account if I pass away? My friend passed away and their account is no longer on Facebook. What happened? How do I request the removal of a deceased family member's Facebook account? What is a legacy contact on Facebook?
• Digital Estate Plan (PDF, Jean Schultz, Pfizer, Inc.)
• State-by-State Digital Estate Planning Laws (EverPlans)
• Digital Cheat Sheet: How To Create A Digital Estate Plan (Everplans)
• 5 Steps to Creating Your Digital Estate Plan (Catey Hill, Next Avenue, 5-6-12) A will is essential — and these days it should include all your online accounts. The new Google Inactive Account Manager feature can also be a useful tool.
• Google releases tool to deal with your data after death (Hayley Tsukayama, Washington Post, Technology, 4-11-13)
What happens to a social media account after a person's death? --Great Lakes Caskets
• Put emergency information on the lock screen of your Android phone (Google Nexus)
• Digital Life After Death (Claude Kerno). A checklist of online accounts: Online backup, email, domain names, online shopping, social networks, travel (frequent flier, etc.), health care, and insurance. Designate a digital executor (who is tech savvy). Create a list of your hardware inventory (computers, tablets, smartphones, external hard drives, USB drives, cameras, music players) and designate a beneficiary for each. Check link to Claude's newsletter archive.
• How To Close Online Accounts And Services When Someone Dies (Everplans, Digital Estates) Step-by-step instructions on how to close more than 180 digital (and some non-digital) services...and the list keeps on growing.
• What happens to your digital life after death? (Maeve Duggan, Factank, Pew Research Center, 12-2-13)
• Personal Archiving (Library of Congress). Preserving your digital memories. Many important resources here: how to scan, how long will digital media last, how to archive personal collections, how to preserve digital materials (photos, audio, video, electronic mail, personal digital records, websites).
• Digital Death Day. A conference was held to discuss such issues as password and identity management (services), the economics of domain names and online memorials, best practices for social sites (what to do when a person's social media identity remains online after they have died, etc.), how to prevent theft and use of passwords, etc.). See links to related stories there, including this: Virtual life after death (Peregrine Andrews, Producer, Radio 4's i-Shrine, BBC News, 5-22-10).
• Digital Legacy Association. See its Frequently Asked Questions (and links to tutorials for what to do about closing Google, Twitter, Instagram, LinkedIn, and website and blog sites, plus online bank accounts and subscriptions and electronic devices.
• What Happens To My Email Accounts When I Die?(Everplans)
Settling an Estate
(Getting through probate, etc.)
See also• What to do after a loved one dies
• After The Funeral: An Executor’s Checklist (Gail Rubin, American Academy of Estate Planning Attorneys, 2016) A practical list, with 49 steps, starting with "Obtain copies of death certificates." Let it help you anticipate what your heirs may have to go through when you're gone and make it easier for them by putting most of the information they will need in one place. For a downloadable PDF of this list, go here.
• Executing an Estate: A Beginner's Checklist (Christina Lesher, online)
• Myths and Facts About Probate (Debra K. Schuster, Eldercare Matters, 5-31-19) Q&As about wills, living wills, advance directives (living wills and durable powers of attorney for health care), and general (financial) durable powers of attorney.
• How to Administer an Estate (Wikihow, illustrated)
• Being an organized executor (Jacki Hollywood Brown, Unclutterer, 6-16-14)
• Will You Need to Hire a Probate Lawyer? (Mary Randolph, J.D., NOLO) Not every executor needs professional help.
• American Society of Estate Liquidators (ASEL) Members of ASEL must meet certain requirements and abide by ASEL's code of ethics. You can use the site to find an accredited member within a 60-mile radius of the estate.
• Estate sales (articles about them)
• EstateSales.net Find an estate liquidator or list your own estate sale. You supply info, which the site uses so agencies can get in touch with you. Not an instant process. Also a good place for shoppers to find local estate sales.
• Avoiding Probate: The Small Estate (NOLO)
• How to Avoid Probate (NOLO).
• Use This Executor’s Checklist to Smooth Estate Transitions (Gail Rubin, A Good Goodbye, 4-18-16)
• The Executor's Guide: Settling a Loved One's Estate or Trust by Mary Randolph, J.D. (the newest edition as of Nov. 2017; there are older editions for less $$)
• The Executor's Handbook: A Step-by-Step Guide to Settling an Estate for Personal Representatives, Administrators, and Beneficiaries by Theodore E. Hughes and David Klein
• Estate and Trust Administration For Dummies by Margaret Atkins Munro and Kathryn A. Murphy (a primer--enough to ask the right questions)
• How to Probate an Estate: A Step-By-Step Guide for Executors (Enodare Publishing, which also publishes state-specific titles (How to Probate an Estate in California) Getting Appointed Executor or Administrator, Understanding Your Role as an Executor or Administrator, Deciding How You Will Administer the Estate, Inventorying the Estate, Managing the Estate, Closing the Estate, Community Q&A.
• Here are Some Things You Must Know About Probate & Estate Administration (Sanford Mall, ElderCare Planning, 3-30-19)
• Five Myths About Wills and Probate (Mary Randolph, Nolo) Common misconceptions, and tips to avoid problems.
• The 7 Most Common Estate-Planning Myths (Entrepreneur, 3-1-08) Myth #6: The Estate Tax is an Unfair "Death Tax." Sometimes it's unfair; often it is not. "Most estate tax is imposed on income that has never been taxed
• Common Estate Administration Problems to be Aware of (Scott Grossman)
WHAT TO DO AFTER SOMEONE DIES -- A CHECKLIST.
Be organized about what needs to be done, so you can delegate some of these tasks. And if you are reading this before you die, do some of these tasks (especially information gathering) in advance, to make dealing with your death easier for your survivors. Post a note in an obvious place about where this information can be found (or tell them, in advance). It's not morbid to do this. It's practical.
TO DO IMMEDIATELY:
• Arrange immediately for organ donation, if desired. The person's driver’s license and/or advance directive will tell you if or she was an organ donor. "Practically speaking, with the exception of corneas and willed body programs, organ donation is possible only in a hospital death. The body's organs--heart, kidneys, liver--will be kept viable by machine until transplant personnel arrive (oftentimes the teams are flying in from far away to retrieve organs and transport them to those in need)." ~ Miller and Berger, A Beginner's Guide to the End
• Notify friends and family right away, and let them know what's planned, for when.
• Follow any instructions for bequeathing the body. If the person made arrangements to donate their body to a medical school, you must respect those wishes. Maybe they specified in an advance directive, living will or health proxy where the body should go. If they haven't made arrangements, the next of kin can donate the body, but you must make that decision as early as possible.
• Get a legal pronouncement of death. You may need a six to a dozen or more copies of the death certificate. Many transactions can't be done by phone; you will often have to present a death certificate in person. You must supply proof of death to close credit cards and bank accounts, to terminate insurance; to withdraw money or transfer accounts to another name; to change property titles (on cars or real estate), to change the name on utilities, to terminate online services and social networks (though you may choose to leave them open for the time being); to apply for VA funeral benefits.
• Make funeral plans. Meet with a funeral director to learn your options (immediate burial, without a ceremony; funeral and burial; cremation; a memorial service, later). What would the person have preferred? (Our father wanted a simple graveside service.) What can you afford? Don't be bamboozled into spending more than the family can afford.
• Order a casket or urn, if desired.
• Invite friends or family members you want to participate in the funeral (give eulogies, do readings, sing, be pallbearers),or help out in other ways. Contact them and discuss what you want.
• Right after the death, mail copies of the death certificate to all three credit-reporting bureaus — Equifax, Experian and TransUnion — and to all credit issuers to cancel accounts.
• Decide what to do with the body, and arrange for transportation. Find a funeral home (which can handle burial or cremation) or work directly with a crematory. See Keeping a lid on funeral costs. Determine if you will need financial assistance. (If the person was a veteran, look into veterans' benefits. You may be able to get financial assistance for a veteran.
• Notify the person's employer (or any group they were volunteering for).
• Secure property (the home, vehicles, boats, etc.). If they will sit empty for some time, notify landlord and/or police. Water plants. Throw out food that will go bad.
• Set the funeral schedule. Make a list of what you want to happen, in what order.
• Order print materials and flowers.
• Don't stop mail, but notify the post office (see Mail for the deceased) where mail should be forwarded, if the home will be unoccupied. You need to track mail, collect bills and magazine and newspaper subscriptions etc., to know what bills to pay and what to cancel or modify.
• Collect all the person's important documents: Will, deed to burial property, copy of funeral prearrangements, life insurance policies, birth certificate, Social Security card, marriage license(s), divorce papers, military discharge papers, etc.
• Arrange with the funeral director for a headstone or marker, if desired and if that hasn't already been done.
• Plan food and drinks (for a funeral reception or celebration of life). Do you want to provide the food yourself, hire a caterer, invite potluck contributions, or hold event at a place where you pay for food and drinks or guests can purchase their own?
• Spread the word. An online funeral announcement is one way to share event details with friends and family. For those who may not use the internet, send a paper funeral announcement or arrange for someone to call them and let them know what's happening.
• Keep a written list of who sends cards, flowers, donations, etc. so that you can thank them later.
• Write the obituary. (See Obituaries.)
• Arrange care for pets, survivors, dependents (temporary and long term).
• Promptly notify the Social Security Administration of the death.
• Contact the Department of Motor Vehicles to cancel any driver's license and prevent duplicates from being issued.
• Shut down any automatic payments to accounts you (or the survivor) no longer need.
• Check wallet for credit cards, membership cards, etc., and cancel the credit cards and anything involving ongoing payments).
• Cancel automatic payments to any accounts you (or survivor) no longer need.
• By law, you are entitled a free credit report every year from all three main credit bureaus. Several weeks after the death, use www.annualcreditreport.com to run a credit report on the deceased to be sure there's no suspicious activity.
• Make a list of organizations the person belongs to, notify them of the death, and cancel memberships, if appropriate.
• Arrange for taxes to be prepared for final year of person's life.
• Notify the board of elections (typically, with the name and date of birth of the deceased, and a copy of the death certificate--it varies by state).
• Shut down social media accounts, if that's what the person wanted done.
• The logistics of death can be overwhelming. New apps can offer help. (Sophia Laurenzi, Washington Post, 9-4-22) New apps and websites with names such as Cake, Lantern and Empathy exist to help people navigate the tumult and confusion after a loss, offering tools that range from organized checklists for the early days of funeral planning to resources for later concerns such as closing a deceased person’s credit card account or finding a home for the deceased person’s pet. Their goal: providing easily accessible and organized help for people in distrss.
• What to Do When a Loved One Dies (Stacy Julien, AARP, June 2012) Very helpful.
• What to do when a loved one dies (Dennett, Craig and Pate) A streamlined checklist.
• What to do when a loved one dies (Consumer Reports, Oct. 2012)
• What to Do When Someone Dies: A Checklist (Ever Loved, with an emphasis on death ceremonies)
INHERITANCE: COMMON QUESTIONS AND PROBLEMS
See also Settling an estate (getting through probate)• Do You Pay Income Tax on an Inheritance? (Roger Groh, eHow video)
• The Ins and Outs of Trusts That Last Forever (Paul Sullivan, Wealth Matters, NY Times, 12-5-14) Legal challenges to perpetual trusts "could come from two sources: creditors in a state where the trusts are unconstitutional who are seeking ways to maximize their settlements and view the trusts as large sources of money, and descendants who want to break the trust and get their money now and without strings attached." Such challenges are easier in certain states.
• Mom Left Me the House. What Do I Owe My Brothers? (Kwame Anthony Appiah, The Ethicist, NY Times Magazine, 8-16-17)
• For an Ailing Feinstein, a Fight Over the Family Fortune (Tim Arango and Shawn Hubler, NY Times, 8-3-23) As Dianne Feinstein, 90, struggles to function in the Senate, a dispute within her family over control of her late husband’s estate is another difficult chapter at the end of a long career. "In one legal dispute, the family is fighting over what’s described as Senator Feinstein’s desire to sell a beach house in an exclusive neighborhood in Stinson Beach, north of San Francisco. In another disagreement, the two factions are at odds over access to the proceeds of Mr. Blum’s life insurance, which Senator Feinstein says she needs to pay for her growing medical expenses. Raised in affluence, Senator Feinstein has long been among the wealthiest members of Congress.
• She was 91 and dying of dementia. City Hall fined her $39K. Now it says her family must pay. (Brett Kelman, The Desert Sun) In Coachella, CA, officials mailed notices of fines to the wrong house, then took her family to court after she was dead. A majority of her debt came from punitive fines, which are not reimbursement of public money. Coachella was criticized by defense attorneys and civil rights advocates for using city prosecutors to force exorbitant costs on unsuspecting residents. “The city doesn’t have funds to do a manhunt for everybody who has a code enforcement case on their property,” Wright said. “Cities don’t have investigative reporters on payroll to find investment property owners.”
• Donating Your Personal or Family Records to a Repository (Society of American Archivists) Good overview of the process, covering these topics: Personal histories preserved for community memory. What is a repository and what can it do for you? What to preserve. What is historically valuable material? Do you need to "cull" the materials or reorganize them? Will a repository take everything you offer? Which of your personal records could have historical value? Plus info about donations, access to collections, restrictions on access, copyright and assignment of copyright, conditional gifts, monetary appraisals for tax deductions, and monetary donations.
Or Google "donating materials to university archives" (or library, etc.) and come up with the guidelines either for institutions near you or institutions with which you have a personal connection (your alma mater, say).
• A payable-on-death bank account -- or "Totten Trust" (AllLaw) is really just a payable-on-death (POD) bank account—an account for which the owner names a beneficiary, who inherits the funds in the account when the account owner dies.
• Charity ratings
• Donating your body or body parts
• Donating organs and tissue for transplants
• Inheriting an IRA (how to maximize its value and when to do what, Henry C. Weatherby, ElderCareMatters, June 2013)
• How unwanted family heirlooms create a divide with aging parents (CBC radio, 8-25-17) Parents see heirlooms. Their kids see junk to clean up. It's a keepsake dilemma for families.
• The 700-Doll Question (Jo Maeder, NY Times, 5-8-13). What to do when your inheritance is more of a burden than a blessing?
• Grandchildren of Barq's founder are challenging sale of root beer rights to Coca-Cola (Jaquetta White, Times-Picayune, 10-17-10)
• The Cottage We Loved and Lost (Bryan Gruley, Medium, 5-24-17) Their parents will required them to sell the cottage they had grown up loving, while giving each of them "the first shot at buying it." The cottage had given them a lifetime of good memories but did they have the energy to keep it up? Or was it time to let another family enjoy it?
• Many baby boomers don't plan to leave their children an inheritance (Walter Hamilton, L.A. Times, 9-5-11). Unlike previous generations, some baby boomers believe they've already given their children enough, and they plan to spend the money they've saved on themselves.
• Practicing philanthropy. Giving to make a difference.
Books About Inheritance
• Inheritance Hijackers: Who Wants to Steal Your Inheritance and How to Protect It by Robert Adamski
• Overcoming the Inheritance Taboo: How to Preserve Relationships and Transfer Possessions by Steven Hendlin (learning to deal with sibling rivalry, division of property, and the emotional turmoil surrounding a family member's death, and to avoid resentment and bitterness among survivors)
• Power Tools for Family Business: Diagnosis for Survival, Success, and Succession by Russell S. Allred and Roger C. Allred
• Sudden Money: Managing a Financial Windfall by Susan Bradley, CFP, and Mary Martin, PhD (a step-by-step program for moving safely through the three phases of building a solid financial foundation, with money acquired through inheritances, divorce, insurance settlements, retirement payouts, and stock options)
Preventing elder abuse, guardianship problems, and scams
• The Takeover: How the Elderly Lose Their Rights (Rachel Aviv, New Yorker, 10-9-17) After a stranger became their guardian, Rudy and Rennie North were moved to a nursing home and their property was sold. A scary case history. Guardians can sell the assets and control the lives of senior citizens without their consent—and reap a profit from it. In the United States, a million and a half adults are under the care of guardians, either family members or professionals, who control some two hundred and seventy-three billion dollars in assets. 'A study published this year by the American Bar Association found that “an unknown number of adults languish under guardianship” when they no longer need it, or never did. The authors wrote that “guardianship is generally “permanent, leaving no way out—‘until death do us part.’ ” "Approximately ten per cent of people older than sixty-five are thought to be victims of “elder abuse”—a construct that has yet to enter public consciousness, as child abuse has—but such cases are seldom prosecuted."
• Guard Your Medical ID (Sid Kirchheimer, AARP, 6-29-14, on CareGivers America) With medical identity theft, crooks use your insurance or personal information to get treatment or medication, or to submit false billings in your name. Don't carry your Social Security card -- carry a copy, and black out a couple of the numbers.
• The Dirty Dozen represents the worst of the worst tax scams. (The IRS) Compiled annually, the “Dirty Dozen” lists a variety of common scams that taxpayers may encounter anytime but especially during tax filing season as people prepare their returns or hire someone to help with their taxes. Don’t fall prey.
• The Kindness of Strangers . Barbara Peters Smith's three-part investigative series for the Sarasota Herald-Tribune exposing tragic gaps in Florida’s system of senior guardianships (called conservatorships in other states). Florida’s elder guardianship system was set up to protect vulnerable citizens from fraud, abuse or neglect. But critics say the system often ignores individual rights, virtually imprisoning some elders who are not incapacitated. And most guardianship decisions are made in hearings and files closed to the public. (And Florida is one of the good states!)
--- Part 1: Elder guardianship: A well-oiled machine Railing against injustice, one case at a time
--- Part 2: Elder Guardianship: Between a rock and a hard place
---Update: Bunny and Claflin Garst A bitter court battle ended with a paid professional guardian in charge of her husband’s finances and his private life.
---Guardian put ex-husband in "rat's nest". Florida’s underfunded elder guardianship system subsists mostly on the assets of its thousands of wards.
---Elder guardianship: Listening to the elders Linda-Kaye Bous insists she does not belong in the assisted-living facility for dementia patients where her guardian has placed her, yet she does not have the right to go home
---Linda-Kaye Bous, 66, talks about life in a facility for dementia patients.
---Update: Claudine and Thomas O'Connor. The couple met late in life, married and had an apparently idyllic existence on Longboat Key until their failing memories embroiled them in separate guardianships — in the midst of a feud between the offspring of their first marriages.
---Elder Guardianship: Where to learn more
---The elder guardianship system in Florida (PDF, graphic depiction of how it works, a little slow loading)
• What are the pros and cons of Guardianship vs Power of Attorney? (Yahoo Answers)
• Elderly Abuse: When Relatives Steal from Seniors (Aging Parents Authority, 8-24-12)
• A read-only option for bank accounts: A woman on a group I belong to (Beverly) recommended a new kind of checking account for seniors: bank accounts with a Read Only option for invited watchers. "Often during end of life times, seniors need to arrange for someone else to pay their bills. This means giving someone access to their bank accounts. Sometimes it is their official Power of Attorney representative and sometimes others. These people are not necessarily official family members. Now that all banking activity can be displayed online to the owners and others who are using the account to pay bills, banks should make available a Read Only option for invited participants. This would help reduce the temptation for fraud, protect seniors from scams, and enable the next generation to keep track of the details, question transactions, and reduce inter-generational paranoia.
• Edith + Eddie. A 24-minute documentary: the love story of America's oldest interracial newlyweds -- a dramatic reminder of how much damage a badly established guardianship can do and a warning to all of us to think through our end-of-life arrangements carefully, so that our power to make our own decisions is not taken away from us).
• Calls for Court Reform as Legal Guardians Abuse Older Adults (Susan B. Garland, NY Times, 7-28-17) Courts have been approving guardians who swindle or neglect their vulnerable wards, but some states and lobbying groups are fighting back.
• Preventing fraud, elder abuse, guardianship problems, and romance scams (blog post by Pat McNees, roundup of interesting pieces on the subject and links to where to find more information)
• Aging Solo: Okay, I don’t have a child to help me, but I do have a plan ( Sheila Sullivan Zubrod, WaPo, 8-15-16) "New to the finances of aging, I had no idea how much control I gained by holding my mother’s durable power of attorney. Had I been less ethical, I could have taken her money and run. Therefore, I’ll never give that power to any one person; it will be held by at least three younger and devoted friends because elder fraud is one of the most horrifying aspects of aging solo. Therefore, I’ll never give that power to any one person; it will be held by at least three younger and devoted friends because elder fraud is one of the most horrifying aspects of aging solo. Trust me: That charming new friend who offers to manage your money so you don’t have to deal with “all those bills” is probably well known to the local police."
• The Hidden Nature of Elder Abuse (Notes from webinar conducted by Brenda K. Uekert, Justice Clearinghouse, 7-27-17) Scroll down for additional resources on the topic.
• How to overcome barriers to successful investigation and prosecution of elder abuse cases (infographic, Justice Clearinghouse, 7-01-17).
• Probe shows court-appointed guardians often not screened or monitored (Jen Christensen, CNN, 10-27-10)
• Avoiding Construction and Home Improvement Scams (National Caregiver Library)
• Red Flags for Rogue Movers (National Caregiver Library) Without ever visiting your home or seeing the goods you want moved, they give a low-ball estimate over the phone or Internet. Once your goods are on their truck, they demand more money before they'll deliver or unload them. They hold your goods hostage and force you to pay more—sometimes much more than you thought you had agreed to—if you want your possessions back.
• How to Protect Yourself from Home Improvement and Equity Fraud (Better Business Bureau, PDF) See also Do Not Let Predators Take Your Home: Know the Basic Facts About Home Equity Fraud (PDF)
• Keeping Our Seniors Safe From Scams (Heather R. Chubb, ElderCareMatters.com). Popular scams for elders include surveys (they do NOT have to fill them out) and letters or emails about sweepstakes and lottery winners. Sites recommended to check a charity's status include
• Charity Navigator
• Charity Watch ,
• Better Business Bureau Wise Giving Alliance
• Elder Mistreatment: Priorities for Consideration by the White House Conference on Aging (Karl Pillemer, Marie-Therese Connolly, Risa Breckman, Nathan Spreng, and Mark S. Lachs, The Gerontologist, 2014)
• Elder Abuse Prevention (Centers for Disease Control and Prevention)
• Understanding Elder Abuse (CDC)
• Elder Abuse: Definitions
• Elder Abuse – A National Tragedy (Ashley Carson Cottingham, Compassion & Choices). A rarely discussed form of elder abuse occurs when an older adult’s expressed wishes at the end of life are ignored, and as a result they are subjected to unwanted and invasive medical treatment.
• Senior Fraud Prevention (A Place for Mom)
• Hacked and Hijacked: What to Do if Your E-mail Account Gets Compromised (Jon Chase, Switched, 2-24-11). Preventive advice includes this: "Set up at least two new e-mail addresses. Use your original e-mail address for personal or business communication as you'd normally do. The secondary e-mail address is insurance against future hacks; use it to communicate with your service provider, since many now ask for an alternative address as added protection. Then, use a third e-mail address only for registering for sites, newsletters, online shopping and other services. It may seem paranoid and excessive (hey, that's us!), but the idea is to compartmentalize your online life a bit. That way, each "world" has its own discrete e-mail account, and will minimize the damage that can be done by any future hacks."
• Aging Panel Looks into Debit Card Scams (PDF, Herb Weiss, Pawtucket Times, 11-21-14) "“Two debit card companies – Green Dot and InComm- told members of the Senate Aging panel of the decision to drop products favored by fraudsters, even though the products had legitimate uses. Although the third company, Blackhawk, did not drop products, it tightened up its security measures on its similar reloadable debit card product.”
StopFraud.gov (The Financial Fraud Enforcement Task Force's advice on how to protect yourself from health/medicare fraud, identity theft, phone and Internet fraud, mortgage and lending fraud, securities and investment fraud, tax fraud, and other dangers)
To discourage sales calls, fraudulent and otherwise:
• National Do Not Call Registry
• Opt Out of Unsolicited Mail, Telemarketing, and Email (Federal Trade Commission
Monitor credit reports often to watch for fraud. This is a reputable site for requesting a free annual credit card: AnnualCreditReport.com.
If you don't want to receive pre-screened offers of credit and insurance, you can opt out of receiving them for five years or opt out of receiving them permanently here, online (https:.//www.optoutprescreen.com/, or, if you don't have access to the Internet, you may send a written request to permanently opt out to each of the major consumer reporting companies. Make sure your request includes your home telephone number, name, Social Security number, and date of birth.
Experian
Opt Out
P.O. Box 919
Allen, TX 75013
TransUnion
Name Removal Option
P.O. Box 505
Woodlyn, PA 19094
Equifax, Inc.
Options
P.O. Box 740123
Atlanta, GA 30374
Innovis Consumer Assistance
P.O. Box 495
Pittsburgh, PA 15230
Identity theft and the top 12 tax scams of 2013 ( Peter O'Dowd, Marketplace Morning Report 5-15-13)
Court Cases About Inheritance
• The Inheritance Case That Could Unravel an Art Dynasty (Rachel Corbett, NY Times, 8-23-23) Long and fascinating story. How a widow’s legal fight against the Wildenstein family of France has threatened their storied collection — and revealed the underbelly of the global art market.
'Those who complain that the art market today operates more like the stock market often blame these families, who shifted a value system once driven by connoisseurship to one based on the law of scarcity. ("Monet and Picasso are like Microsoft and Coca-Cola," David Nahmad once said.) Their dominance derives from the fact that they're family firms, bolstered by internal secrecy, pride and lifetimes of experience. As the Wildensteins proved, families can be structured like corporations, where the profit principle governs even relationships and succession plans. The few people who seem capable of undoing them are themselves. For the Wildensteins, the weight of the family legacy seems to have cracked the younger generations.'
• Schiele Artworks Returned to Heirs of Owner Killed by Nazis (Tom Mashberg and Graham Bowley, NY Times, 9-20-23) 'The Manhattan district attorney’s office arranged for the return of seven works to a family that has been seeking them for more than a quarter of a century. Seven works by the Austrian Expressionist Egon Schiele were handed over on Wednesday to the heirs of the Viennese cabaret artist who had owned them before he was murdered by the Nazis, marking a major turning point in one of the art world’s longest-running Holocaust restitution cases. “This is of huge importance in our world,” said one of the Grünbaum heirs, Timothy Reif, referring to the descendants of Holocaust victims seeking the return of looted property nearly 80 years after the end of World War II. “It sets the tone and the agenda for all future cases.” 'For more than a quarter of a century the Grünbaum heirs have sought the return of a number of different Schieles; their claims, which prompted civil suits in state and federal courtrooms, have been closely watched in the art world.'
• Inheritance Cases (Legal Zoom) Including What you need to know about intestate inheritance In the absence of a will, how an estate is divided varies based on a number of factors. Learn what might happen to your property if you fail to leave a will for your heirs.
• Five U.S. Supreme Court Decisions that Impacted Estate Planning (Samuel, Sayward, and Baler, 6-1-22) The Supreme Court hands down numerous “under-the-radar” decisions that have far-reaching impacts on all areas of the law, including estate planning and elder law. Brief accounts of five Supreme Court decisions that have impacted estate planning and elder law (each described in one paragraph):
---Nichols v. Eaton (1875) Decided nearly 150 years ago, this case validates the use of “spendthrift clauses” in trusts.
---United States v. Windsor (2013) struck down the Defense of Marriage Act.
---Clark v. Rameker (2014) deals with creditor protections for tax-qualified retirement assets (e.g., 401(k)s, IRAs, etc.) "The Supreme Court ultimately held that the creditor protection only applies to the original contributor and their surviving spouse, and not to inherited beneficiaries, ultimately changing the calculus for estate planners in terms of whether to name a trust or an individual as the beneficiary of such assets."
---Sveen v. Melin (2018) highlights the importance of making sure to update your estate plan, including beneficiary designations, in the wake of major life changes such as divorce.
---North Carolina v. Kimberley Rice Kaestner 1992 Family Trust (2019) has provided some guidance to estate planners on the tax consequences of trusts that touch multiple states.
• Love and Inheritance: Celeste Holms' Family Feud (John Leland, NY Times, 7-3-11) The Oscar-winning actress Celeste Holm, 94, shown with her husband, Frank Basile, 48, at their co-op on Central Park West. The couple had had a five-year legal battle with her two sons. Hanging over all parties is the question of why the lawsuit lasted so long and cost so much money — the very money they were fighting over. It is an easy thing to imagine: the wary son, watching a man much younger than himself court his wealthy, octogenarian mother. For Ms. Holm, the issue was not Mr. Basile or taxes; it was her autonomy. In the end, the parties settled: Mr. Basile would inherit one-third of Ms. Holm's estate, most of which is tied up in her apartment. Ultimately Ms. Holm severed ties with her sons. Basile stayed with Holm to the end.
Medicare, Medicaid, and Health Care Insurance and Exchanges
CLICK HERE for our new page on Medicare and Medicaid, which have their own new page. (They outgrew their original slot.)Long-term care insurance
CLICK HERE for new, expanded page on long-term care and long-term care insurance, which outgrew its original space and has its own new page.
Organizations watching out for elder rights and pension rights
• Long-Term Care Ombudsman Program (Administration on Aging)
• National Academy of Elder Law Attorneys (NAELA) find lawyers who specialize in end-of-life legal concerns. See, for example, Interviewing and Choosing an Attorney (NAELA) What questions to ask
• National Center on Elder Abuse (NCEA). Directed by the U.S. Administration on Aging, NCEA is a resource for policy makers, social service and health care practitioners, the justice system, researchers, advocates, and families. (Click on state resources, tribal resources, or elder rights resources.
• National Consumer Law Center (this link is to resources for older adults)
• National Legal Resource Center ( a resource for legal services providers, pro bono attorneys, and other poverty law advocates to find legal information on a variety of topics related to Elder Law)
• National LTC Ombudsman Resource Center (consultation and information and referral for long term care facility residents, families and others who use ombudsman services)
• Pension Counseling and Information Program (Administration for Community Living). Plan to spend time exploring links to resources on this site--here are just some categories of help:
---Aging and Disability Networks
---Protecting Rights and Preventing Abuse
---Success stories
---Connecting people to services
• Pension Rights Center (PRC, the U.S. Administration on Aging's Pension Counseling and Information Program, currently serves 30 states). See fact sheets, reports, and other resources. If you are not located in one of the states listed, have a pension question, and don't know where to turn for help, try PensionHelp America
• Elder Rights
• Women's Institute For A Secure Retirement (WISER) Improving the long-term financial security of all women through education and advocacy. See entries such as Retirement Plans – Understanding the Basics (Oct.2014)
• Senior Medicare Patrol (SMP, protect yourselves and your loved ones from Medicare fraud) Find your state patrol program and services.
• Meet the Hedge Clippers: the Activist Group Targeting Hedge Funds (Jess Delaney, Asset Management, Institutional Investor, 4-13-15) Backed by unions and other community activists, the Hedge Clippers are taking on income inequality by singling out Paul Tudor Jones, Daniel Loeb and other hedge fund billionaires. .
Providing for a relative with special needs
• Providing for a Relative With a Serious Illness (Jane Bryant Quinn, AARP Bulletin, July/August 2013) Special estate planning is needed for loved ones with special needs
• Disability and Health (CDC page for family caregivers)
• With my son hospitalized, an opportunity to apply my teachings ( Karen Libertoff Harrington, Kevin Media, 8-14=13) Healthcare disparities can affect patients’ care -- be an advocate for your patients, striving to give them the best care possible.
• In Sickness and in Health (Larry Zaroff, Pulse,
• Becoming the Parent With the Child in the Wheelchair (Sandra Joy Stein, Motherlode, NY Times, 8-16-13) When your child is suddenly stricken with a devastating illness, you learn to navigate encounters with families who knew you before your lives changed.
End-of-life care and planning for pets
• Old Dog Needs $6,000 Surgery. What Do You Do? (Roz Warren, My Story, Booming, NY Times, 3-26-13).
• Gus Freud's memorial to Suzie.Bob and Mary Livingston of Our Living Tree (in New York City) put together this memorial to Gus's dog Suzie. What a gift to have a video like this, to remember Suzie by. What does into it? Photos, Gus's loving words in his voice, and music in the background. The art, of course, is putting it all together beautifully, as they did--with Gus's loving words.
• How to Set a Price on the Life of a Beloved Pet? (Tess Vigeland, Your Money blog, NY Times, 3-25-13). Costs and choices mount for pets' end-of-life care. Includes Q&A About Pet Health Care
• Making End-of-Life Choices for Our Pets (Richard Palmquist, Huffington Post, 12-5-11)
• Making End-of-Life Decisions for Pets (Tara Parker-Pope, Well, NY Times, 7-26-10)
• End-of-Life Care FAQ: A guide to caring for your pet during his final days (ASPCA)
• Euthanasia... What To Expect (Pet MD)
• Living with the loss of your cat (Rita Bruche, Cats of Australia)
• Euthanasia: What To Expect when the time comes (T.J. Dunn, Jr., Cats of Australia)
Let me know of other online material that is helpful.
Eldercare planning resources
The Complete Eldercare Planner: Where to Start, Which Questions to Ask, and How to Find Help by Joy Loverde (print edition of this workbook more useful than Kindle, for filling in charts etc.)
• Elder Care: What to Look For, What to Look Out For!, by Thomas M. Cassidy (which includes, among other things, useful checklists)
• Eldercare 911: The Caregiver's Complete Handbook for Making Decisions by Susan Beerman, Judith Rappaport-Musson
• Eldercare for Dummies by Dr. Rachelle Zukerman
• The Eldercare Handbook: Difficult Choices, Compassionate Solutions by Stella Henry and Ann Convery
Elder law, elder protection, and pension rights
• The Elder Law Handbook: A Legal and Financial Survival Guide for Caregivers and Seniors by Peter J. Strauss and Nancy M. Lederman
• Elder Law Answers
• Elder Law Answers about Medicare and Medicaid
• Elder Law (NOLO's online information). Learn about powers of attorney for your parents, conservatorships, planning for elder care, the ins and outs of caregiving and arranging for long-term care, hospice care, avoiding elder abuse, and other elder law issues.
• Elder Mediation Could Soon Become a Staple in Age-Related Care (Luc Rinaldi, Huff Post, 5-26-15)
• Taking on "the real power players": How workers are taking pension control back from hedge funds," (Spencer McAvoy, In These Times, via Salon.com, 10-4-16) "A growing movement to take pension money out of hedge funds, then, isn’t just about high fees and bad returns. It’s part of a larger effort to wrest control of the economy away from the financiers who’ve created a system that works only for the super-rich....New Jersey is a landmark victory for hedge fund critics in the labor movement. Not only is it the biggest divestment so far, but the win is particularly impressive given that the state previously had one of the highest proportions of state pension fund investments in hedge funds in the country—12.5 percent....The efforts of unions and activists have put divestment on the national agenda. Increasingly, both universities and public retirement funds are deciding to take their business elsewhere."
• Employee Retirement Income Security Act (ERISA) (Wikipedia entry) ERISA is a federal law that establishes minimum standards for pension plans in private industry and provides for extensive rules on the federal income tax effects of transactions associated with employee benefit plans. ERISA was enacted to protect the interests of employee benefit plan participants and their beneficiaries.
• Preventing fraud, elder abuse, guardianship problems, and romance scams (links to many useful articles and sites).
Across Generations: A 5-Step Guide for Creating an Expression of Donor Intent by Susan Turnbull. See also section on ethical wills and legacy letters.
Aging in Place: Rethinking Solutions to the Home Care Challenge (MetLife report by Louis Tanenbaum, Sept. 2010). You can download the report (PDF) and the workbook, free.
Before Passing Along Valuables, Passing Along Values (Robert Powell, Wall Street Journal, 12-7-12). Why ethical wills and life lessons are an increasingly important part of estate planning.
The Beneficial Effects of Life Story and Legacy Activities by Pat McNees (first published in the Journal of Geriatric Care Management)
Blogging Wills: What happens to your blogs when you die? Darren Rowse, ProBlogger, 12-21-06, on what your survivors will need to know, including contact details for partners, subcontractors, vendors, and bloggers who work for you; passwords and contact details for advertising programs, affiliate programs, etc.; passwords for Paypal, Amazon, etc. accounts; contact details for web hosts; instructions on what to do. Read this and a later piece on the same thing: Do you have a blogging will? (adding info on forums/communities, ebooks and courses, other partnerships, books, job boards, etc.).
Breaking the Silence (John Leland, NY Times, 3-18-08, on talking openly in the family about sharing the family's wealth in a way that helps, not hurts, the next generation)
Breaking the Silence: Helping Clients Discuss Estate Plans with Their Families (excerpt from white paper sponsored by GenSpring Family Offices). Written for wealth management professionals, but helpful to those wondering whether and how to pass their wealth on to the next generation.
Charity Navigator.Tip sheets on savvy donating to charity include Top 10 Best Practices of Savvy Donors and 7 Questions To Ask Charities Before Donating. Check out how they rate particular charities on their ratings, alphabetical list of charities. See also Give Well (charity research), Charity Watch (formerly American Institute of Philanthropy), and America's Worst Charities (50 worst U.S. charities, which devote less than 4 percent of donations raised to direct cash aid, as reported after a yearlong investigation by the Tampa Bay Times and The Center for Investigative Reporting).
Compassionate Allowances. The list of 25 rare diseases and 25 severe cancers for which Social Security will fast-track the processing of claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security’s standards. Disabled World's explanations seem helpful.
Compassion and Choices (supports, educates and advocates for choice and care at the end of life -- improving pain and palliative care, enforcing living wills and advance directives, and legalizing aid in dying)
Cost of Dying: Discovering a better way for final days (Lisa Krieger, Mercury-News, 12-29-12), part of an excellent series on end-of-life care and decision-making. The stories:
• My father's death . The cost of dying: It's hard to reject care even as costs soar (San Jose Mercury-News, Feb. 2012)
• Lessons learned (follow-up Feb. 2012)
• How-To Plan (planning for a good death, from advance directive to talking with your family, 4-8-12)
• Relief at the door (Palliative care improves lives and eases the cost of dying, 7-20-12)
• Simple act of feeding poses painful choices (11-2-12)
• At-home caregivers face challenges, sacrifice (12-2-12)
• How hospitals' treatment varies . Some Bay Area hospitals combat death aggressively with expensive treatment (12-9-12)
• Gayla's goodbye. One nurse's end-of-life choice was surprisingly simple — and liberating. (12-13-12)
• Discovering a better way for final days (12-29-12)
• Related stories, including A shift in how we end our lives.. A shift from expensive and not always helpful intensive care to a more low-intensity, high-touch standard of care.
Cyberspace When You're Dead by Rob Walker (NYTimes Magazine, 1-5-11). The Internet promises a kind of immortality. What if your last tweet is the one that defines you for all time?
Death and social media: What happens to your life online? (Jacqui Cheng, Ars Technica)
Death Cafes Breathe Life Into Conversations About Dying (listen to the story on NPR, All Things Considered, 3-8-13)
Disability Planning (ElderLawAnswers -- including who is eligible for Supplemental Security Income, or SSI)
Engage with Grace and the One Slide Project. To help ensure that all of us--and the people we care for--can end our lives in the same purposeful way we lived them. • Watch the Engage with Grace Story (Video, Za's Story) • Download the One Slide (PDF)
Farrah Fawcett's Long Goodbye (Jim Rutenberg, NY Times, 5-27-11). Dying of cancer, she authorized a documentary of her final days. "Ms. Fawcett had intended the film to address shortcomings she saw in American cancer treatment and to present it in art-house style....After [Ryan] O’Neal and NBC gained full control of the documentary, the film took on the feel of network celebrity fodder — at once more glossy and more morbid....Many scenes addressing the American medical system were scrapped or truncated." Her final story became the object of a lengthy battle. A lesson in how not to do something--but I'm not sure what the lesson is.
A Financial Self-Defense Guide for Older Americans (Ann Carrns, Your Money, NY Times, 3-28-13)
Fighting Over the Living Will of J. Bruce Llewellyn. Benjamin Weiser, NY Times (5-17-10), writes: "Tools like living wills that are supposed to provide clarity often do not. Wishes evolve, documents age, and even one’s state of mind can be a source of bitter dispute." That's what happened in the life of a wealthy black millionaire whose wife insisted on honoring his living will after he changed his mind about it and got loyal friends to fight for his new wishes.
Help! Keith Olbermann on 'The Life Panel.' "Have that conversation." Keith Olbermann's statement about the conversation he had with his father, who was exhausted and terrified from multiple procedures and complications after having his colon removed. Conferring with the doctors and asking them to give him a rest from procedures was a "life panel," not a "death panel."
The Hidden Dangers in Living Wills, excerpt on PBS NOW site from Understanding Your Living Will: What You Need to Know Before a Medical Emergency by Ferdinando L. Mirarchi. Mirarchi explains that living wills may be misinterpreted as "Do Not Resuscitate" (DNR) orders or "Do Not Treat" orders. They also lack code status designations that medical personnel would readily understand. "Full Code Except Cardiac Arrest" will serve you better than "Do Not Resuscitate (DNR)," which should not be in your living will. You should also avoid putting "No Code" or "Do Not Intubate," "Chemical Code," or "Slow Code," in your living will. Read here online for why. Be very specific about what YOU want, or don't want, in your living will, but write one!
• Hospital Discharge Planning: A Guide for Families and Caregivers (one of many useful fact sheets from Family Caregiver Alliance
How Mom’s Death Changed My Thinking About End-of-Life Care by Charles Ornstein (The Health Care Blog, 2-28-13, but post appeared first in Pro Publica--printed in Washington Post as "Deciding when to let Mom die")
How to claim death benefits (Funeralwise)
Jane Brody's Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare Medically, Legally, and Emotionally for the End of Life -- a practical book, with explanations and to-do lists for everything from advance directives and why a living will is not enough to funeral plans, living with a bad prognosis and dealing with uncertainty, caregiving, hospice, communicating with doctors, assisted dying, organ donation, autopsy, and legacies.
LeaveLight: A Motivational Guide to Holistic End-of-Life Planning by Marilyn L. Geary and Jacqueline Janssen. Designed to motivate you to write down your end-of-life planning (right up to what you want done with your pets), in a binder in which you express gratitude and forgiveness and express your wishes on everything from distribution of property to ways in which you want to be remembered (what you want in your epitaph and obituary/death notice), and so on -- all the information your survivors need to honor your life and wishes and know how you felt about them. Includes practical info about things such as green burials and recommends participating in a Leavelight Circle: six participants in six 2.5-hour sessions complete their end-of-life plans, getting fear of doing so behind them.
Legal and Financial Planning for People with Alzheimer's Disease Fact Sheet (National Institute on Aging, NIH). See also Alzheimer's and End-of-Life Decision-Making (Robb Miller, Aging Today, May-June 2013), an excellent explanation of many end-of-life planning terms and of the kinds of wishes people who expect to have Alzheimer's or are in its early stages should express in writing--sharing those wishes as widely as possible among friends and family).
Legal Guide for the Seriously Ill: Seven Key Steps to Get Your Affairs in Order, prepared by the American Bar Association Commission on Aging for the National Hospice and Palliative Care Organization. Step-by-step instructions on planning for health care expenses; managing health, money, property and personal decisions; planning for the care of dependents; knowing your rights as a patient; and getting your legal documents in order--with information on regulatory and legislative changes related to health care.
Lessons of a $618,616 Death (Amanda Bennett, Bloomberg Businessweek, 3-15-10). Two years after her husband's death from a rare and deadly kidney cancer, Amanda Bennett's cover story examines the costs of keeping one man alive.
****FIVE WISHES. Put this Aging with Dignity document and task at the top of your to-do list. Expressing your Five Wishes lets your family and doctors know:
* Who you want to make health care decisions for you when you can't make them.
* The kind of medical treatment you want or don't want.
* How comfortable you want to be.
* How you want people to treat you.
* What you want your loved ones to know.
• Kristie Miller's Letter of Intent does a great job telling her family what she would want should she decline.
• Living Wills and Advance Directives: What You Need to Know (PBS NOW)
• How is a medical power of attorney different from a living will? (Dave Ramsey, 7-30-2020) [I'm quoting here but have rearranged the points made.] There are two methods for dealing with end-of-life decisions: trying to describe all your wishes in a living will or having someone you trust make those calls for you under your medical power of attorney. So, it comes down to a piece of paper versus a person. A living will is a legal document spelling out your personal choices about end-of-life medical treatment in specific situations. What makes a medical POA different is how it empowers a trusted friend or loved one to honor your wishes when you can’t do it for yourself. The agent can only use the power a medical POA gives them if your doctor says you’re unable to make key decisions for yourself. So, for obvious reasons, this should be someone you’d trust with your life.
• Living Will Resources (secular and for various faiths, Beliefnet)
• Medical power of attorney & living wills (John Ventura and Tess Vigeland, Marketplace Money, 7-12/13-2008)
• What to consider before becoming a medical power of attorney (Miles J. Varne, KevinMD, 12-14-2020)
• Aging Care Directives (telling our loved ones what kind of care we'd like if lifestyle adjustments become necessary, website of Andrea Gross and Irv Green)
Medicare
• AARP on Medicare and Medicaid
• Ask Ms. Medicare archives (AARP's Patricia Barry's responses to important questions)
• Frequently asked questions (Centers for Medicare & Medicaid Services)
• Medicare & Medication information (also CMS)
• Medicare Rights
• How Medicare Fails the Elderly (Jane Gross, Sunday Review, NY Times, 10-15-11) Fee-for-service doctors and Big Pharma benefit from Medicare, but it does not cover some of the things elders need, including certain diagnostic tests and long-term care by home aides at home.
• When Medicare Falls Short (Jane Gross, NY Times, 10-16-08) Click here for more NY Times stories tagged "Medicare."
• Health-care bill in retirement: $240,000 (Elizabeth O'Brien, Retire Well, MarketWatch, 11-15-12) How to budget for what Medicare doesn’t cover
• ElderLaw answers about Medicare and Medicaid
• Quick Facts About Payment for Outpatient Services for People with Medicare Part B
(PDF, Center for Medicare Advocacy)
• Are you a hospital inpatient or outpatient? If you have Medicare, ask! (PDF, Medicare) From a story by Stacey Singer DeLoye in the Palm Beach Post: Outpatient vs Inpatient. For Medicare beneficiaries, it matters. Here's why:
* Inpatients have better coverage under Medicare Part A. There's a one-time deductible of $1,184 for up to 60 days' care.
* Outpatients' bills are covered under Medicare Part B. Patients must pay both their deductible and 20 percent of doctors' charges. They'll probably also have to cover the hospital's charges for medications.
* Medicare only pays its nursing home benefit following a "qualifying hospital
stay." That requires a three-day inpatient stay; any time spent in observation doesn't count toward the three days. Plus, the day of discharge doesn't count toward the three days.
*Note: Rules may differ for beneficiaries with a Medicare Advantage plan.
• Observation Status & Bagnall v. Sebelius Increasingly, hospital patients are finding that they have been considered "Observation Outpatients," although they have been cared for in the hospital for many days and nights. On November 3, 2011, the Center for Medicare Advocacy, and co-counsel National Senior Citizens Law Center, filed a nationwide class action lawsuit to challenge this illegal policy and practice. Bagnall v. Sebelius (No. 3:11-cv-01703, D. Conn) states that the use of observation status violates the Medicare Act, the Freedom of Information Act, the Administrative Procedure Act, and the Due Process Clause of the Fifth Amendment to the Constitution. (The problem: Medicare doesn't cover observation status.)
• Medicare tries to limit the use of observation status (The Advisory Board, 5-6-13) Proposed rule would limit the length of observation stays.
• Nursing Home/Skilled Nursing Facility Care (Center for Medicare Advocacy)
• Self Help Packets , including self-help packets for expedited appeals (Center for Medicare Advocacy)
• Forced to Choose: Exploring Other Options (Paula Span, The New Old Age, NY Times, 12-3-12). "Medicare will pay for hospice, the acknowledged gold standard for those at the end of life and their families, and it will also pay for skilled nursing (known in this universe as the 'sniff' benefit, for Skilled Nursing Facility or S.N.F.). But only rarely will it cover both at the same time, which creates a financial bind."
• Forced to Choose: Nursing Home vs. Hospice (Paula Span, NY Times, 11-30-12) Medicare only rarely reimburses for both hospice and the skilled-nursing facility benefit at the same time.
• Managing the Assisted Living vs. Hospice Dilemma (Judith Graham, New Old Age, NY Times, 11-19-12)
• Health overhaul confuses Medicare beneficiaries (Kelli Kennedy, Philly.com, 9-12-13). In late 2013, roughly 50 million Medicare beneficiaries will get a handbook in the mail with a prominent Q&A that stresses Medicare benefits aren't changing. "We want to reassure Medicare beneficiaries that they are already covered, their benefits aren't changing, and the marketplace doesn't require them to do anything different," said Julie Bataille, spokeswoman for the Centers for Medicare and Medicaid Services.
• StopFraud.gov (The Financial Fraud Enforcement Task Force's advice on how to protect yourself from health/medicare fraud, identity theft, and other risks)
92 and Still Driving? Seniors At The Wheel (Debbie Brodsky).
***Not Quite Six Feet Under (Tess Vigeland, Marketplace Money, conversations on American Public Radio about end-of-life planning, on topics such as estate planning, medical power of attorney, durable power of attorney, living wills, living trust, and wills--audio files and transcripts)
On Our Own Terms (listen online to various segments of Bill Moyers' PBS show on dying) and make use of On Our Own Terms resources (links to sites on care options, final days, therapy and support, and other resources). Download free the helpful discussion guide (PDF)
Planning Ahead (Caring Connections' useful info on advance care planning, advance directives, healthcare agents, end-of-life financial planning)
Planning for Your Adult Children With Special Needs Can Also Protect Your Assets From Nursing Home Costs (Dagmar M. Pollex, ElderCareMatters.com)
Prescriptions: Making Sense of the Health Care Law NY Times blog
Prepared Patient Forum (Center for Advancing Health site on how to find and use safe, decent health care)
Prescriptions (New York Times blog about the health care industry and health policy)
Procrastination: The Deadline Disorder. Erica Davis Bak (WashPost 3-31-09) compares "avoidance procrastinators" and "arousal procrastinators" (who work best with a deadline) and says the easiest way to make a task more appealing is to make it concrete (list X, Y, and Z), not abstract (write will). She's talking about postponing tax preparation, but the principle's the same.
Put It In Writing (American Hospital Association on advance health care directives) -- click on links for wallet card or glossary of terms
She hit the limit: Woman 'maxed out' on health care benefits (Debra Pressey, The News-Gazette, 12-18-09)
SURVIVAL KIT: Stock up on essentials for a disaster (Mayo Clinic staff)
Taking Care of Parents Also Means Taking Care of Finances (Walecia Konrad, NYTimes, 9-18-09)
Talking to Doctors About a Terminal Diagnosis (Judith Johnson, Huffington Post). And read the comments.
They said my mother’s ‘time had come,’ but what if they were wrong? (John Graykowski , Arlington, Washington Post 10/27/2011). "...remember that an advance medical directive is a general statement that cannot anticipate the circumstances you will face. When does a procedure that may provide short-term relief and support for healing become an artificial sustaining of life and prolongation of death? How can you attain a level of certainty that your loved one is truly unable to live absent permanent measures? I found myself lost in the awful gray areas unanswered by my mother’s directive. It would have helped to have some guidance on specific possible interim and time-limited measures, such as temporary intubation and nutrition. 'What would your mother want?' "
Veterans healthcare, death, and survivor benefits
The following sources vary in clarity, level of detail, user-friendliness, so check them all and let me know if you find something better:
• Veterans benefits
• Fact sheets (on several topics, Veterans Benefits Administration)
• Benefit brochures (on several topics, Veterans Benefits Administration)
• VA Honesty Project (House Committee on Veterans' Affairs). Its goal: to highlight the Department of Veterans Affairs’ lack of transparency with the press and the public about its operations and activities.
• Veterans Benefits for Long Term Care (Debra A. Robinson, ElderCare Matters)
• Working with the Veterans Health Administration: A Guide for Providers
• House committee puts up website to track stonewalling by Veterans Affairs press office (Mark Flatten, Washington Examiner, 3-24-14)
• Veterans resources (Funeral home Money & King's useful page: Who is eligible? How do you apply? Reimbursement of burial expenses. Burial Flags. Burial in national VA cemeteries. Headstones and markers. Presidential memorial certificates.)
• Survivors and Dependents Benefits (Death After Active Service) (U.S. Dept of Veterans Affairs) and a page to lead you to info particularly for benefits for a veteran, parent, spouse, or child
• Military Connections on Veteran Burial Benefits. Click on links for Military Funerals, Veteran Headstones or Marker, Presidential Memorial Certificate, and so on.
• Survivors' veteran burial benefits (click on button for whether service member died in service or after)
• Death Pension Benefits (for Widows,Widowers, and Dependent Children
• How to Claim Veterans Death Benefits
When Possessions Lead to Paralysis (Paula Span, The New Old Age, NY Times 9-16-10, on how family members can help family seniors deal with, and get rid of, the lifetime overaccumulation of "stuff")