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.

Aging and Self-Fulfilling Prophecy: The Best Is Yet to Be

John Goodenough, age 94, example of aging and self-fulfilling prophecy
John Goodenough, who at 94 has filed a patent application on a new kind of battery. Credit Kayana Szymczak for The New York Times

An article on aging caught my eye the other day and now it will not leave me alone. To Be a Genius, Think Like a 94-Year-Old, by the NY Times’s Pagan Kennedy, tells the story of John Goodenough and it is clear his name sells him short. He is a physicist who, at 57, was the co-inventor of the lithium-ion battery. He has recently filed a patent application for a new battery that promises to “be so cheap, lightweight and safe that it would revolutionize electric cars and kill off petroleum-fueled vehicles.” I immediately thought of a connection between aging and self-fulfilling prophecy.

Ms. Kennedy suggests that Goodenough is an example of how creativity and cognition can increase, rather than decrease, with age. He is able to draw upon a lifetime spent building a foundation of knowledge and experience.

The article makes much of the tendency in the business world and in our culture to favor youth and of the many biases expressed in agism. This is the part that I keep returning to. We Boomers, like generations before us, are subject to the debilitating effects of age discrimination. Here is a cause worth fighting for! Where should we direct our protests? Our demands for reform? Here’s a clue:

Pogo enemy cartoon related to aging and self-fulfilling prophecy

Like many couples after retirement, Ann and I have occasionally considered the conventional wisdom of moving somewhere that we can “age in place.” Single floor home, few if any stairs, appropriate height counters for a wheelchair, no shower ledge to step over, grab bars all over the bathrooms, etc. Of course we don’t need those things yet. The “wisdom” is that by the time we do actually need them, we will be comfortable in this new home and not need to face the trauma to our diminished faculties of moving.

In other words, our final years will be marked by infirmity. And all the time between now and then will be spent anticipating those final years. I would like to suggest a more fitting name for “aging in place.” Planned obsolescence. Well, we have other plans.

Recently our next door neighbors of many years moved into a new assisted living apartment in town. A mild stroke for him and a fall by her announced their readiness to their children. They are in their mid to late 80s, but they never seemed to realize it. I could hold my own with him on a tennis court, but by the time I remembered I couldn’t take it easy on him whenever we played Pickleball, he would pick it up a notch and beat me. He was notorious at the gym for lifting weights with his shirt off, and still looking good. She is full of energy and mischievous wit. We roared at her tales of the cross-country car-camping trip they took just four years ago.

Sure, many of us will, or already do, face health issues that no amount of prevention or positive thinking are going to help us avoid. But except for those circumstances, the evidence is mounting that we all have the option and means of increasing the quantity, but especially the quality and vitality, of our remaining years.

Aging and Self-Fulfilling Prophecy: Choose your future

My career in education gave me ample opportunities to observe the power of self-fulfilling prophecy on young learners, the contrast between children of similar intelligence who had internalized the powerful messages either that they were capable or that they were not. Research studies quantified the sometimes astounding role it plays in student success or failure. What does that have to do with us?

It turns out we are no different when we age.

I found this fascinating 2015 Irish study, Negative Perceptions of Aging and Decline in Walking Speed: A Self-Fulfilling Prophecy. One of the first things they did was divide the 4800 participants into two groups and primed one group with all these negative stereotypes about aging. (Or ageing, as spelled in Great Britain.) That group demonstrated immediate declines in objective walking speed.

Next, they addressed the longer term effects of that kind of negative attitude. The participants completed a questionnaire rating their level of agreement with statements of attitude about aging. After 2 years, walking speeds were measured and compared with their initial speeds and categorized by their questionnaire results.

Participants (average age 62.8) who remained in good health over the 2 years, but had indicated a “strong belief in a lack of control and in negative consequences as a result of aging” had a significant decline in their walking speed. What to make of this? Decline in walking speed is an important indicator of deteriorating health outcomes, including earlier death.

And, this study suggests, improving one’s outlook about aging should have the effect of slowing one’s rate of physical decline.

Applying common sense can lead to a similar conclusion. Someone who believes that painful, inflexible joints and poor balance are a normal part of getting older is more likely to exercise less, rather than differently, as those conditions inevitably get worse. Someone who believes it is natural to gain weight as one gets older is less likely to try to maintain a healthy weight.

The famous Nun study suggests that even the fearsome impact of Alzheimers can been blunted for some by a physically and mentally active and healthy lifestyle.

Other great examples of the power of our perceptions are in the CNN report, 5 Powerful Benefits of ‘Pro-Aging’ Thinking. Our attitudes and beliefs about aging can make positive differences in our behaviors, our thinking, and even on our immune system.

Aging and Self-Fulfilling Prophecy: Youth Shows But Half

So, perhaps you accept that it is in our power to make our final chapters happier and more robust than they might be otherwise. But, implied at the outset was that the conclusion of each of our stories has the potential not just for a happy ending, but for apotheosis, a culmination. How is that possible?

In our society, so much of our identity and self-worth is tied to our careers. I am a teacher. You are a doctor. You are a welder. You are a (fill in the blank.) When we retire, we find ourselves untethered. Adrift. Not many of us will be like John Goodenough, able to work in the same field into our nineties. The natural impulse is to assume and accept that the most valuable part of our lives is over.

I made a choice a few months ago, without fully understanding it, to believe that I had not lived the best part of my life yet. I don’t expect any patents in my future, but I do expect there is much still to be built on my own foundation. I expect that of each of us.

GROW old along with me!
The best is yet to be,
The last of life, for which the first was made:
Our times are in his hand
Who saith, “A whole I planned,
Youth shows but half; trust God: see all, nor be afraid!”

-Robert Browning