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Narrative Medicine (or medical narrative)and illness memoir |
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DOCUMENTS YOU NEED TO PROTECT YOUR OWN AND YOUR SURVIVORS' RIGHTS
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!
DOCUMENTS GOVERNING YOUR MEDICAL AND HEALTH CARE:
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.
There are two main kinds of advance directive: a living will and a health care proxy (or durable health care power of attorney). Of these the second is probably most important.
· 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? 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 (link provided). For a contrarian view, read Charlotte Allen's piece (link below). 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 incapacitated. 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.
· 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.
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).
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.
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 writer's organization or the Association of Personal Historians, among other organizations. 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.
Also, find the time to 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.
Buy Now - Dying: A Book of Comfort
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Other 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)
• 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 memberships in groups and awards received.
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.
• 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 deeds, recent tax returns, wills).
• 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)
. A list of all financial assets and accounts, with bank account numbers and branch locations.
• 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).
• A master list of all your accounts (savings, checking, credit card, stocks, bonds, other investments, insurance, frequent flier accounts, etc). List each institution, type of account (checking? savings? money market?), owner or policyholder (you? you and spouse?), account number, contact information for institution.
• A list of computer access codes and key 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, stocks and bonds) that are stored under lock and key and photocopy the documents for your home office files.
Buy Now - Dying: A Book of Comfort
Getting Your Affairs (and Key Information) in Order
• Getting Your Affairs in Order (National Institute on Aging, one of many helpful resources)
• Preparing an Emergency Kit in Plain English (Common Craft video, part of an excellent series)
• 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
• 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)
• Medical history: Compiling your medical family tree (Mayo Clinic on what to include in such a history)
Advance directive for your state (Caring Connections -- download the advance directive for your state)
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
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.
Assisted Living: All the Right Questions. What to know and what to ask when choosing an assisted-living facility. Julyssa Lopez (Washingtonian, 11-09) explains key questions to get info on: What care is provided? Is the facility well run? Can it handle emergencies? What if my health gets worse? What do I look for in a contract? Can I change the contract? Are there hidden fees? Can I get a refund? Can they kick me out?
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.
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)
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?
A Digital Death Day 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.).
DoYourProxy.org. Speaking for you when you cannot speak for yourself: create your advance directives online, for free. See their Glossary and answers to frequently asked questions
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)
Estimate your retirement benefits (Social Security Online), Retirement Planner FAQ (frequently asked retirement questions), Benefit Calculators and other resources from the Social Security Administration.
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.
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!
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)
In death, a promise for the future. As her world diminished, Elizabeth Uyehara signed her body over to researchers to help unravel the mystery of Lou Gehrig's disease. (Thomas Curwen, Los Angeles Times, 8-28-10, on the course of Uyehara's ALS and on what happens when organs are donated for science)
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 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.
Long-term care insurance, advice and information about:
• ElderLaw Answers (What to Look for In a Long-Term Care Insurance Policy, When Should You Purchase Long-Term Care Insurance?, How Much Insurance Should You Purchase?, Which Spouse Should Get Coverage?,Long-Term Care Insurance and Medicaid Planning,
Partnership Policies, The Tax Deductibility of Long-Term Care Insurance Premiums, The Taxation of Benefits, Consult With a Qualified Agent, Books on Long-Term Care Insurance)
• National Clearinghouse for Long-Term Care Information U.S. Dept of Health & Human Services
• The Coming Caregiver Crunch and Why This Gerontologist Owns Long Term Care Insurance by Ken Dychtwald, Huffington Post
• Long-Term Care Insurance: The Essentials (free PDF from MetLife, an insurer)
• J.K. Lasser's Choosing the Right Long-Term Care Insurance by Benjamin Lipson
• Long-Term Care: Your Financial Planning Guide by Phyllis Shelton
*** 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)
Organizing and dealing with things and information
• The Burdens of Stuff (Sophia Dembling on why not to leave your children thousands of dusty, crumbling books)
• The Boomer Burden: Dealing with Your Parents' Lifetime Accumulation of Stuff by Julie Hall
• Don't Toss My Memories in the Trash-A Step-by-Step Guide to Helping Seniors Downsize, Organize, and Move by Vickie Dellaquila
• Get It Together: Organize Your Records So Your Family Won't Have To by Melanie Cullen and Shae Irving
• If Something Happens to Me by Joseph R. Hearn and Niel Nielsen (a workbook to organize legal, financial, and insurance information)
• The Senior Organizer: Personal, Medical, Legal, Financial by Debby S. Bitticks, Lynn Benson, and Dorothy Breininger
• The Things They Left Behind by Peggy Burds, owner of Emerald Estate Sales, First Personal Singular Column in Washington Post Magazine (10-17-10). She concludes: "If I keep something, it has to be extremely sentimental. Everything I own has a story: It may not have started out as my story, but when I chose to bring it into my life, it became part of it. We all write our own history, and our stuff is often the only thing left to tell that story. I don't want my story to be a bunch of junk that doesn't mean anything."
Parsing the New Law on Long-Term Care (Paula Span,New York Times, Prescriptions blog, 5-3-10)
POLST. What is a POLST and Do I Need One? (Angela Morrow, RN, About.com 3-1-10). A POLST is a “physician’s order for life sustaining treatment.” A relatively new document, the POLST is a way to translate a living will or an oral advance directive into 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.
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.
Project Grace. 10 Legal Myths About Advance Medical Directives
Put It In Writing (American Hospital Association on advance health care directives) -- click on links for wallet card or glossary of terms
SeniorLaw (where senior citizens, their families, attorneys, social workers, and financial planners, can access information about elder law, Medicare, Medicaid, Medicaid planning, guardianship, estate planning, trusts and the rights of the elderly and disabled. (Centered on New York law.)
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.
Veterans 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 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")
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.)
• 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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The Good Short Life by Dudley Clendinen (NYTimes, 7-9-11). Living with Lou Gehrig's disease is about life, when you know there's not much left. And Writer Dudley Clendinen has chosen not to go to the great expense and limited potential of extending his life--but to enjoy what he can of it, while he can. He learned he had the disease when he was 66, and Maryland Morning, an NPR news station, has been airing conversations with him about how he and his daughter Whitney have been dealing with the disease and its implications. Listen to the podcasts
Tess Vigeland interviews DJ, a 58-year-old woman from Durham, NC, who after many years with a chronic illness learns she has terminal cancer. At that point she realized she should make arrangements for her animal companions and her possessions…" those very difficult decisions we have to make in our lives about what to do with what remains after we leave."
"When my mother died," she says, "we had to go through her things, and it was so hard, because every time I was getting rid of something I felt like I was giving away a piece of her. So what I'm doing, I'm giving away a lot of things already…
"In truth, none of us knows how much time we have left. … Please do this. You owe it to your family; you owe it to the people who love you. When they lose you that trauma is so overwhelming, the last thing they need is to try to second guess what you wanted. Love them enough, love yourself enough, to do this for them. Face your fears about it and just do it. It's terribly scary, it's like the monster in the closet. But when you open the closet, the monster's not there. And it's going to happen to all of us. "
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