Avoid Difficult End-of-Life Decisions: Make Them Now

It’s been a quiet week in Lake Trumpbegone. Scanning the news of the last week for anything related to the Donald, I just don’t seem to find anything of significance. Well, there was some FBI flap, North Korea shooting missiles toward Japan, a Kissinger sighting and threats of White House “tapes” in case the firing wasn’t Watergate-ish enough already. Oh, and unplanned or not, the big f*** you to the country in the form of Oval Office smiles and back-slapping with the Russian foreign minister and the Russian ambassador. Yes, the same ambassador that was meeting and phoning Trump campaigners during the election and transition. That was the next day after the humiliating purge of the chief investigator into Russia’s attack on our elections! Yada yada yada. Same old, same old.

So, it seemed a good opportunity for a break from the depressing topic of present day politics in America to talk about something marginally less gloomy– present day dying in America. I know. I must have a natural instinct for building readership.

This fun idea did not drop out of the blue. There was a recent article in the NY Times by Dhruv Khullar, M.D., M.P.P., a resident physician at Massachusetts General Hospital and Harvard Medical School, titled “We’re bad at death, can we talk?”  If you are a (SSA) card-carrying boomer, I strongly urge you to read this article. Preferably after finishing this one.

A Personal Perspective

Ann and I made the decision eight or nine years ago to see a family estate attorney in order to prepare documents that included wills, advance health care directives, and durable POAs (power of attorney) for health care decisions and finances/property.

What we thought would be a simple matter of signing some papers drawn from boilerplates turned into several days (our time, not billable hours) of enforced consideration. Given numerous document samples to work with, and the option to add and edit, we faced hypothetical calamities such as cancer, car crash, and Alzheimers. We also acknowledged the certainty of death. Not the someday we really don’t expect, but the one day we know will come.

If you’ve done this already, you understand what I mean when I say it was a positive experience. Assets in a will are easy. Get it done and you can check it off your list and congratulate yourself. But, considering the reality of your own death is major league stuff, as is who will speak for you if you are incapacitated and how you will know they understand what you would choose. First, you will need to know that yourself.

For us, the process I just described was a big part. The consultation with an attorney who specializes in family estate planning helped to broaden our thinking and realize the vital issues at stake. Reading, revising, and choosing what to include and what to exclude in the advance directive required that we confront some of our fundamental beliefs, values, preferences, and fears. For example, near the end, do you want to be kept alive under any circumstances with extraordinary medical intervention? Or, under certain circumstances, at a certain point, would you prefer to be kept as comfortable as possible and have as natural a death as possible? At home or in a hospital? What are those circumstances and what is that point?

Another factor in our thinking was what we observed in the gradual decline and deaths of our own parents, two with Alzheimers or dementia, along with second-hand observations of the same experiences of friends and friends’ loved ones. What we have seen has ranged from refusal to think or do anything about it to orderly and loving preparation. It goes without saying which approach has impressed us as preferable.

We ended up with a portfolio of documents, with paper and electronic copies for our children and medical providers, that are our best effort to come to terms with the later and last stages of our lives.

If you don’t have a similar set of papers already, here is why you should. Not someday, but now:

  1. It is a gift to your loved ones that cannot be overestimated. It is like the credit card commercial: attorney costs for us 8-9 years ago were about $1000, having it accomplished, priceless. (I’m only focusing on the health care directive and POA. The will and the financial/property POA were included and equally important.)
  2. If you don’t start it now, when will you? Answer: someday. That day might come too late.
  3. The choices that must be made when you are in a hospital are usually during either a crisis, when you are least able to think clearly, or you are unconscious. Thinking you will make these decisions “when the time comes” really means you are passing the buck to loved ones who cannot read your mind and who may not be able to think very clearly at that time either.
  4. You may find, like we did, that facing up to your mortality now, and all that implies, is good for the soul and instills the confidence that you will be ready to face it in fact when the time comes.

A National Perspective*

In the last 6 months of life, Americans make an average of 29 visits to the doctor. In the last 30 days, “half of Medicare patients go to an emergency department, one-third are admitted to an I.C.U., and one-fifth will have surgery.” This, in spite of surveys indicating that 80% express a preference to avoid hospitalization, especially intensive care, at the end.

We spend 6 times as much on Medicare patients in the last year of their lives than all other patients over 65 combined, and that last year accounts for 25% of all Medicare spending. That has been true for the past 30 years.

And yet:

Patients who engage in advance care planning are less likely to die in the hospital or to receive futile intensive care. Family members have fewer concerns and experience less emotional trauma if they have the opportunity to talk about their loved one’s wishes. And earlier access to palliative care has consistently been linked to fewer symptoms, less distress, better quality of life — and sometimes longer lives.     -Dhruv Khullar, M.D., NY Times

So, there is mounting evidence that most people want access to palliative (i.e. treating the symptoms, such as pain, of a condition) and hospice care and that such care produces better outcomes, a better quality of life…and death. There seem to be two main reasons it isn’t more prevalent.

The most obvious reason is that many people fail to make that preference known, either in the moment or with an advance directive. The other reason is that the hospital either fails to honor the preference or simply does not have the facility or resources to do so.

I don’t have data, but have read of the reluctance doctors and hospitals have to stop efforts to extend a patient’s life as long as there are any avenues remaining, even if the best that can be hoped for is a few more days at the expense of more suffering and more medical bills. This inclination is likely to become stronger as medical technology continues to advance. Our challenge as a society will be to weigh the benefit of the extended days against the quality of the person’s life and the right of that person to determine how it is lived and how it ends.

The individual’s choice becomes moot when living in a state or rural area where palliative and/or hospice services are restricted or unavailable. For example, nearly 90% of New England hospitals have palliative care services, whereas only about 40% of those in the South do. And, if a hospital does not have a palliative care program, it falls to individual doctors to discuss options with a terminal patient and family. Nearly 70% of doctors say they haven’t been trained in palliative or hospice care, with many uncertain of the distinction between them. And about half of doctors say they are uncomfortable discussing terminal illness.

Most of us can relate to that. It isn’t as much fun as, well, most topics. But that is not an excuse. Not for doctors. Not for boomers. We have lived our entire lives thinking the rules do not apply to us or we should at least get to set the rules ourselves. DT is a boomer, remember? Sorry, Donald. You– we– aren’t going to weasel out of this one. Or buy, bully, or bluster your way out of it.

So, why not make our final curtain a class act? Set it up now. Do it right. Make it a farewell that is an expression of your love and care.

 

*The source for information in this section is the article by Dhruv Khullar, M.D., which was cited and linked above.

6 Replies to “Avoid Difficult End-of-Life Decisions: Make Them Now”

  1. Thanks Michael – for this and all your other insights.

    A superb book on this topic is Being Mortal: Medicine and What Matters in the End, by Atul Gawande. The first half is a dreary description of facilities for aging, but the remainder has illuminating accounts of the wrter’s experiebces with patients and families facing end-of-life realities and decisions. A sport and strangely comforting, if not uplifting read.

    1. Thanks for your comment, Larry, and for the book recommendation. I read Gawande’s Checklist Manifesto, but not Being Mortal. I’ll check it out. (Or, at least the second half!)

  2. I am an extremist on this topic. I don’t want to live with dementia. Period. I want it to be listed as a “terminal condition” in our death with dignity law and the requirement of the patient to be of sound mind when the drugs are given should be not applicable with dementia. I heard my other ask to “just go to sleep and not wake up” when she was still quite rational. and then had to watch her my decline into dementia. I know she would never have wanted to live as long as she did with round the clock care and no sense of what was happening. All the other issues in preparing “advanced directives” are easier to settle in my mind. Unlike Larry, I found all of the book “Being Mortal” fascinating and important. Another one with a bit more humor is “Can’t we talk about something More Pleasant” by Roz Chast (done in cartoon format). This is a critical issue for boomers and I am glad you brought it up.

  3. I’ve witnessed good deaths, my father, my mother and my brother. Then from afar the needless medical interventions given to my-sister-in-law and her subsequent death. I’d take the former over the latter, hands down, anytime. Advance Directive written and filed. Now your job when you visit is the light a fire under David to do the same!

Comments are closed.