May 15, 2008

Writing an End-of-Life Letter

Last week, I reviewed a book full of practical and legal advice for Baby Boomers and their loved ones called Alive and Kicking. I learned a lot from the book, and the authors were kind enough to send me some columns to use as guest posts. Here's the first one.

A Letter to My Family and Doctors Concerning End-of-Life Matters
I don’t mind the idea of dying. It’s just I don’t want to be there when it happens. - Woody Allen
Probably you have a Living Will, somewhere around the house. It directs what treatment you want during your last illness, most likely insisting on "no heroics" – the terrifying image, the stuff of countless TV shows, being hooked to machines in ICU for weeks, dying a slow and painful death, bankrupting your family.

Living Wills aren't very effective. Studies show that, despite what your Living Will might say, doctors generally do what your family directs. We recommend a letter.
It may be the most important letter you will ever write. It will improve the odds that your Living Will will be followed and there are even better reasons.
"Everyone knows they're going to die, but nobody believes it. Once you learn how to die, you learn how to live." - Mitch Albom, Tuesdays with Morrie
How to get beyond denial? Not by checking boxes; but by writing about your final illness.

Your letter can trigger a meaningful family talk. Parents and their adult children often find it next to impossible to discuss end-of-life matters, matters that fester. "Will I become a burden to my family?" "What should I do if mom can't care for herself?" The hardest part is starting the discussion. Here a perfect ploy: "I just wrote this letter concerning my final illness. I want you to read it; then we'll talk."

What issues might you address? Hospice (a wonderful choice), cardiopulmonary resuscitation (usually a bad choice: they work best on TV), feeding tubes, organ donations, autopsy, burial, and funeral arrangements (Sitting Shiva or Irish Wake). In our book, Alive and Kicking, Legal Advice for Boomers, we go into these matters in detail.

What might get in the way of your family and doctors following your wishes? Family members may not agree as to proper treatment and some might insist that "love means keeping our parent alive." Consider:
I hope my family will carefully listen to each and come to agreement. If not, I appoint _______________ as the final arbiter and as my health care power of attorney. If _______________ cannot serve, then I appoint ________________. I know your decisions may hasten my death; no one should feel guilty or feel that the only way to show love is to prolong my life. The opposite may be true.
Fear of legal trouble may prevent your doctors from giving adequate pain medications and may encourage them to pursue heroic, yet hopeless, measures.
Pain. I want adequate pain medication even if it causes addiction or hastens death. No one should take any action complaining that I received too much pain medication.

End-of-Life Medical Treatment. I do not want my life extended if my prognosis is grim. No one should take any action complaining that the treatment I received was not aggressive enough.
Doctors may be reluctant to give a prognosis, particularly a grim one. This leads to tragic results: children for out-of-state may arrive too late and expensive, painful, and fruitless procedures may be followed.
Prognosis. I want my family to insist upon a prognosis of my condition, even if it is a negative one.
In any event, be sure to include, at the end of your letter, something for your family to sign:
We, the author's family members, have read and discussed this letter with the author. We understand it and agree to follow it. Signed . . .
Writing the letter will not be pleasant: denial is not for nothing. But there are huge dividends:
"Once you learn how to die, you learn how to live."
End-of-life discussions sound dreadful. But, once beyond the awkwardness, you will find them deeply moving, filled with relief and humor. Details don't matter. The value is now, not then, the simple message to your family: "I love you, I trust you, and it's time to spend a few minutes talking about my final illness; it's really nothing to dread." And perhaps, "Pass the wine."

As to then, when the tough decisions must be made, not to worry; you'll probably be run over by a bus.

Kenney Hegland is a Professor of Law at the University of Arizona and has taught at Harvard and UCLA. Robert Fleming is a leading Elder Law attorney. Visit their website at


Father Sez said...

Wow! I have not thought about this at all. Reading your post has made me wonder.

The husband of a distant relative of mine has been bedridden for many years. I have wondered about how painful and traumatic this must be all.

Elizabeth F. said...

This is a great idea! My MIL passed away 3 years ago. While in the hospital for a colon issue, she contracted a MERSA Staph Infection. She was in ICU for 5 mos. up and down, intebated, and we could not talk to her to find out how to proceed. She was single and her parents were still living. Her 3 children and her parents had to decide what to do and it caused family division (which I know she would have loathed). She suffered until the end as did the family. She never got to sign the Living Will papers at the hospital because they had to suddenly induce a coma to intebate her because of breathing issues. We wished we had her feelings in writing to help us make decisions.

Chief Family Officer said...

@Father Sez & Elizabeth - You have both made me realize that I have been thinking of this letter from my own perspective, i.e., about writing my own letter. But what I really ought to be doing is making sure our parents have these letters of instruction, so that we will know what they want should the day ever come.

Jenn @ Frugal Upstate said...

Thanks for tackling a tough issue.

Anonymous said...

Thanks for participating in this week's Carnival of Family Life by contributing this post! The Carnival is at ice cream is not for breakfast this week and will be live on Monday, May 19, 2008, so drop by and check out some of the other excellent articles included in this edition!

This is an excellent article. And if your readers want to know the severe consequences of not planning in advance, they can read about the case I litigated all the way to the California Supreme Court on the question of whether a brain-damaged man should live or die: Robert's Legacy.