Dr. Ken Murray, a retired clinical assistant professor of family medicine at the University of California, wrote a thought-provoking article earlier this year in the Wall Street Journal entitled, “Why Doctors Die Differently.”
The essential point of the paper was captured in the sub-headline, noting that doctors’ experiences throughout their careers teach the limits of treatment and reinforces the importance of the need to plan for the end.
In essence, physicians – and I would add other clinical care providers to that list – know all-too-well that medicine cannot fix all, especially at the end of life.
Murray quotes nursing professor Karen Kehl, who in the article called “Moving Toward Peace: An Analysis of the Concept of a Good Death,” noted features of a graceful death, such as:
- Being comfortable
- Being in control
- Having a sense of closure
- Making the most of relationships, and
- Having family involved in their care.
Unfortunately, in today’s world, many patients experience a death without these attributes. Physicians have seen this so frequently that it influences how they think about the end if their lives too.
Why the disconnect?
To avoid what may be considered undo influence, physicians try not to impose their own views on the situation.
Providing hard clinical data to enable a patient to make a decision is generally believed to be the extent of the information a physician or care provider should offer.
When asked directly what they would do for themselves, physicians often deflect the question to ensure patients are not overly influenced by their answer:
“It is what you would want to do, not what I would do.”
This is adherence to the medical ethical principle of autonomy, making sure that patients or their decision-makers make decisions for themselves and without coercion.
But perhaps we have lost something by the answer we provide.
By not responding to the question directly, patients may not be able to learn from the lessons and experiences of physicians and other clinical care providers, the same lessons that determine why doctors die differently.
“If I were in this situation I would consider these issues and make decisions that are in my best interest. The reason is….”
Unfortunately, without that guidance patients fear making the “wrong” decision, and instead opt for all possible care available; care which very well may be essentially futile in light of their clinical circumstance.
My father, who had ALS (“Lou Gehrig’s Disease”), made a decision to not accept ventilator support when his respiratory muscles were failing. He made this decision after our discussions about the course of his disease and what a ventilator could or could not provide to him.
I spoke of the many patients that I had cared for in my training and early years of practice, some who benefited from “life support,” many who did not. He loved life as much as anyone I knew, but valued the quality of his life more than a few additional weeks or months of dying.
He died peacefully at home, in the presence of his wife, his daughter, his daughter-in-law, and his granddaughter.
His son was not there.
His son was in the medical intensive care unit, providing care to some patients who were also in the process of dying but did not – or could not -make a decision to “do everything possible.” Many would have a much more graceful death in their own homes.
When I thought about it, I found it ironic that I had spent so much time ensuring my father died a “graceful death” – an ending that he had directed after he talked to me about my perspectives and weighing these with his values – yet I was spending my clinical time on patients who likely had not had the opportunity to direct the end of their lives in the manner that they would have wished.
I realize that this discussion may be uncomfortable to many of you.
The subject of death is no more comfortable to me when I am discussing my own mortality. The inevitable may be death and taxes, but taxes are so much easier to contemplate and debate.
As Murray points out, “death is a much harder pill to swallow” especially since we have no way to fully control this finality. In addition, the politicizing of this issue with fear of “death squads” or other histrionics has served no purpose in advancing the discussion.
This does not have to be the case.
All of us can gain much greater control over how our lives end and the choices that are made at the end of life. Frank discussions with oneself, as well as with your confidants and care providers, are a start, especially when those discussions start when they are not forced by the urgency of a new acute critical or terminal illness.
Written directives and instructions are instructive in this regard. Advance Directives and patient advocates for health care decisions can assist to ensure the end of your life is filled with those elements of a graceful and meaningful exit.
I believe communities and social networks can move this effort forward.
Advance Directives Awareness Week, June 11-15
Within Henry Ford Hospital, members of our Ethics Committee are planning an Advance Directive “blitz” in June. From 11 a.m. to 2 p.m., June 11-15, there will be a table in the hospital cafeteria with information about Advance Directives.
The goal is to increase awareness about the importance of Advance Directives and provide a mechanism by which employees and visitors can actually complete their own Advance Directive and have it added to their medical record. Other elements in the Ethics Committee’s Advance Directive Awareness Week initiative will focus on educating patients and families.
In other words, we want to blanket the hospital with education about the importance of advance planning and increase both our patients’ numbers who have them, as well as our employees.
Larger community groups can raise awareness as well.
Communities like La Crosse in Wisconsin activated health care facilities, workers, clergy, press and community groups to increase the completion of advance directive and end of life instructions. Through their efforts, over 85% of patients had completed end of life directives.
Some of their work was curtailed by protestors of the community wide counseling being characterized as “death squads.”
My fear is far greater for squads who do not follow my wishes for a good death, instead providing meaningless medical interventions with no hope of recovery.
Can we end this ignorance?
Do yourself and your family a favor: Consider what is important you, talk to your family, talk to your doctor and nurses. And complete one of the most important instructions that you will provide. Hopefully it will not be needed for many, many great years to come.
Future blog posts will return to other equally important issues, like food service and parking.