Advance directives, living wills, Medicare, and other practical matters



Getting Your Affairs in Order

Getting Your Affairs in Order (National Institute on Aging, one of many helpful resources)
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.
Use This Executor’s Checklist to Smooth Estate Transitions (Gail Rubin, A Good Goodbye, 4-18-16)
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
Want control at the end of your life? Here’s what you need (Bonnie Lawrence, Family Caregiver Alliance, NY Times, 4-10-15) Advance Health Care Directive (AHCD), Physicians Orders for Life Sustaining Treatment (POLST, replacing DNR), Durable Power of Attorney for Finances, Will, Trusts, Final Arrangements, Beneficiary Forms, Where to Find My Important Papers. Includes a good list of various types of trusts and why you might want them.
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.
Preparing an Emergency Kit in Plain English (Common Craft video, part of an excellent series)
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.”
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
Get It Together: Organize Your Records So Your Family Won't Have To by Melanie Cullen and Shae Irving
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?"
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)
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.
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.
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)
More things to know about inheritance plans
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Advance directives, POLSTs, living wills, health care (medical) proxies


"Half of the people older than 65 admitted to hospitals are incapable of making choices for themselves," writes Ellen Goodman. "So we need to choose a decision-maker in case we can’t decide for ourselves. And to fill out an advanced directive." (Washington Post, 6-6-16) If you're not in good health you will also want medical orders (or physicians orders) for life-sustaining treatment (indicating if you want that or not).

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. Two important parts of the advance directive:
(1) The health care proxy, or a 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.).
(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) order, and (3) whether or not you want to be an organ donor should you die.
Download Your State's Advance Directives (state-by-state forms, CaringInfo, National Hospice and Palliative Care Organization)
These documents are legal documents, but they are NOT medical orders. Give your doctor a copy of your advance directive, but be aware of 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 that complements your ADVANCE DIRECTIVE and that 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. 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. 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.
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.
The Agent's Role in End-of-Life Care (Robert Wood Johnson report)
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.
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.
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.
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.
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
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 under-treat pain since 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.
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 (a/​k/​a "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.
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.)"
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.
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.
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?
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.
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.
https:/​/​endoflifewa.org/​alzheimers-diseasedementia-advance-directive/​
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).
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 as a pre-hospital D.N.R.), and have it signed by your doctor."

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)
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.
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
State-by-State Advance Directive Forms
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 directives by state (Caring Connections). Download the free advance directives and instructions for your state--these can be opened as a PDF (portable document format) file
• 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)
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End-of-life planning and document storage sites (U.S.)


For those who want online storage of important documents--many will stick to paper.
U.S. Living Will 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)
Download your state's advance directive (CaringInfo)
State-by-State Advance Directive Forms (EverPlans)
State-by-State POLST Forms (EverPlans) A Physicians Order for Life Sustaining Treatment (POLST) form is a legal document for people with advanced illnesses that specifies the type of care a person would like in an emergency medical situation.
POLST programs in your state
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 Probate Laws (EverPlans)
State-By-State Organ Donation Registries (EverPlans)
EverPlans state-by-state guides
End-of-Life Decision-Making (Family Caregiver Alliance). Excellent explanations of end-of-life documents--e.g., a living will is a more limited type of advance directive.
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 (a simple, secure way to make sure you've taken care of everything)
Principled Heart
After Steps
SecureSafe (privacy protected online storage of important files and passwords that you can access from anywhere, anytime)
Buy Now - Dying: A Book of ComfortWhat If? Workbook (by Gwen Morgan) A fill-in-the-blank guide for putting your affairs in order.
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Documents and information you should
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)
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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 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. It is not a medical order.

The POLST (MOLST, ETC.), on the other hand, is a one-page summary your medical wishes in the form of a medical order. It states 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. Here's what they stand for:
Medical Orders for Scope of Treatment (MOST), often called Medical Orders for Life Sustaining Treatment (MOLST)
Physician Orders for Scope of Treatment (POST), often called Physician Orders for Life Sustaining Treatment (POLST).
These two are one-page physician orders that help provide health care treatment instructions for seriously ill adults when nearing death.

The MOLST and POLST serve 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). 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, is more comprehensive than documents called DNR (do not resuscitate) or in some states DNAR (do not attempt resuscitation), or AND (allow natural death). · You may decide at some point to have a do not resuscitate (DNR) order — another type of advance directive — 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 where to find the forms.)
State-by-state POLST/​MOLST forms (Everplans provides links)

· A LIVING WILL, a legal document 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, exploratory surgery, amputation, 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.)

· 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.

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.
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.
• 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.
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Wills, trusts, legacies, and estates

What you need to know 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.)
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)
Being an organized executor (Jacki Hollywood Brown, unclutterer, 6-16-14)
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).
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 than others
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.
What Estate Planning Documents should I have? (Elder Care Matters)
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.
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."
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.
10 Things You Should Know About Writing a Will (Brett Widness, AARP, May 2012)
Authors' wills, trusts, and estates
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.
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.
Q&A about Power of Attorney (AARP November 2008)
Durable Powers of Attorney and Revocable Living Trusts (Family Caregiver Alliance)
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.

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--see section below on planning for your digital estate).
Disability Planning (ElderLawAnswers)
End-of-Life Decision-Making (Family Caregiver Alliance)
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.

Living Trusts


Thinking about a living trust (Chris Farrell, Marketplace, APM, 4-5-12)
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."
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)
Durable Powers of Attorney and Revocable Living Trusts (Family Caregiver Alliance)
Elder law (where to find legal help)
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ARTICLES ABOUT WILLS, TRUSTS, AND LIVING TRUSTS


Do You Pay Income Tax on an Inheritance? (Roger Groh, eHow video)
Mom Left Me the House. What Do I Owe My Brothers? (Kwame Anthony Appiah, The Ethicist, NY Times Magazine, 8-16-17)
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).
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?
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:
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)
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Planning, handling, and protecting your digital estate

If you have the passwords to all your accounts on your computer, be sure to leave somewhere the password/​code to 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 your computer.
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."
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?


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.
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)
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)
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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.)
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Wills, trusts, legacies, and estates

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
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)

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Preventing elder abuse and scams

and being aware of senior guardianship problems

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)
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)

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Long-term care insurance

CLICK HERE for new, expanded page on long-term care and long-term care insurance, which outgrew its original lot and has its own new page.
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Documents and information you should have available in an easy-to-find place:
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Wills, trusts, legacies, and estates

and what you need to know about inheritance plans

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
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)
Durable Powers of Attorney and Revocable Living Trusts (Family Caregiver Alliance)
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).
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.).
Disability Planning (ElderLawAnswers)
End-of-Life Decision-Making (Family Caregiver Alliance)

Living Trusts
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)


ARTICLES:
This part under construction!
Do You Pay Income Tax on an Inheritance? (Roger Groh, eHow video)
Inheriting an IRA (how to maximize its value and when to do what, Henry C. Weatherby, ElderCareMatters, June 2013)
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?
Family retirement, inheritance conversations lost in translation ( Tiffany Hsu, Los Angeles Times, 11-14-12) “Whether it’s a parent facing a shortfall in retirement income or an adult child weighing the tax implications of an inheritance, too often discussing these issues is considered taboo within families, but real emotional and financial consequences emerge when such conversations don’t happen or lack sufficient depth,” Kathleen Murphy, Fidelity’s president of personal investing, said in a statement. On the topic of whether the children will care for the parents if they fall ill, 97% of nearly 1,000 people surveyed had opinions that conflicted with those of the other generation.
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.




BOOKS:
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)


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You can make a secure donation at PayPal to help support the cost of maintaining this site





Organizations watching out for elder rights and pension rights

Elder Justice Coalition, an advocacy group focused on preventing abuse of older people
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. .
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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.
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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).
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.
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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
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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).
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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.


***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.


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")



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)
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)
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)
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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")