In a recent lecture at the American College of Trust and Estate Counsel Summer Meeting, Hanson Reynolds discussed what may bother those who are dying the most and ways that doctors and attorneys may be able to assist patients and clients in addressing end-of-life decisions.  Steven Akers of Bessemer Trust, in his Annual Musings on that meeting, gives the following account.
The initial inspiration for the lecture was Atul Gawande’s 2014 book, “Being Mortal” (a poignant, thought-provoking account that an elder law attorney friend gave me a couple years back).  Dr. Gwande championed the development of checklists for surgical procedures and the development of a team concept for sophisticated surgeries.  He brings that learning to the manner in which doctors deal with end-of-life decisions for their patients and reflections on mortality.
Death of Ivan Ilych
Dr. Gawande reflects that mortality was not studied when he was in medical school.  The purpose of medical school was to teach how to save lives, not to tend to patients’ demises.  He remembers a one-hour class about Tolstoy’s “Death of Ivan Ilych,” published in 1886 about a high-court judge’s sufferings and death from a terminal illness in 19th century Russia.  After falling from a ladder, his physical condition worsened to the point that his physician realized the condition was terminal.  As his condition worsened during the long and painful process of dying, the judge began to hate his family for avoiding the subject of his death, and pretending he was merely sick.  The judge found his only comfort in a peasant servant, Gerasim, who showed compassion for him.  These excerpts from the book vividly describe the feeling of this dying person and the loneliness arising from his family’s and physician’s refusal to pay attention to what really mattered to him:
“What tormented Ivan Ilych most was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill, and that he only need keep quiet and undergo a treatment and then something very good would result. . . .
And he had to live thus all alone on the brink of an abyss, with no one who understood or pitied him. . . .
Apart from this lying, or because of it, what most tormented Ivan Ilych was that no one pitied him as he wished to be pitied. At certain moments after prolonged suffering he wished most of all (though he would have been ashamed to confess it) for someone to pity him as a sick child is pitied.  He longed to be petted and comforted.  He knew he was an important functionary, that he had a beard turning grey, and that therefore what he long for was impossible, but still he longed for it, and in Gerasim’s attitude towards him there was something akin to what he wished for, and so that attitude comforted him.  Ivan Ilych wanted to weep, wanted to be petted and cried over, and then his colleague Shebek would come, and instead of weeping and being petted, Ivan Ilych would assume a serious, severe, and profound air, and by force of habit would express his opinion on a decision of the Court of Cassation and would stubbornly insist on that view. This falsity around him and within him did more than anything else to poison his last days.”
Later Reflections
Dr. Gawande put Ilych out of his mind after graduating from medical school, but reflected on it much later.  He contemplated whether physicians had developed an understanding of patient needs for some semblance of what was really important to them.  The evidence was that medicine often fails to help the people that it intends to help, and the waning days of life are given to treatments that sap the patients’ bodies with no sliver of hope.  The harm inflicted denies the comfort that is most needed.
As patients near the end of life, decisions about their living situations by family members are primarily aimed at ensuring their safety at the expense of autonomy.  Elderly patients are mistakenly treated as children when they are denied the right to make their own choices, even bad choices.
Various observations from Dr. Gawande:
“Our reluctance to honestly examine the experience of aging and dying has increased the harm and suffering we inflict on people and has denied the basic comforts they need most.”
“Death is the enemy…. But the enemy has superior forces.  Eventually, it wins.  And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation.  You don’t want Custer.  You want Robert E Lee … someone knows how to fight for territory that can be won and how to surrender it when it can’t.”
“There is almost always a long tail of possibility, however thin.  What’s wrong with looking for it?  Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable.”
“Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.”
Learning From Palliative Care Specialist
Dr. Gawande reflected on things that he learned from a palliative care specialist at his hospital, Dr. Susan Block.  She made him understand that explaining treatment plans in these situations requires skill, no less skill than is needed for conducting surgery.  She advised to use an “ask, tell, ask” approach during a difficult discussion about a patient’s prognosis.  Ask what information the patient wants, tell the patient the information, and then ask what the patient understands.
Trying to learn what is important to the patient under the circumstances to help them achieve those goals requires as much listening as talking.  “If you are talking more than half the time, you are talking too much.”  Use phrases such as “I wish things were different.  If time is short, what is most important to you?”
Dr. Block uses a list of questions to cover before decisions are made.  What does the patient understand about the prognosis?  What lies ahead?  What trade-offs are the patient willing to make?  Is the patient willing to go through severe pain and rehabilitation to get a little additional time at the end of life?  Or is the patient willing to give up additional time in order to have greater comfort and a return to regular life for as long as possible?  How does the patient want to spend time if health worsens?  Who should make decisions if the patient is not able to do so?
Dr. Block practiced her skills with her own father who was terminally ill.  She asked him what level of being alive would be tolerable.  Her father replied that if he could eat chocolate ice cream and watch football on TV, he was willing to stay alive.  As her father declined, the family was asked whether to go through another surgery for him.  Dr. Block asked the surgeon whether her father would be able to eat ice cream and watch football if he survived the second surgery. The answer was yes, so the decision was easy; Dr. Block knew what he wanted.
Interpretive Approach
Dr. Gawande concludes that the ideal approach should be neither paternalistic nor merely informative (and the way the physician presents the information can strongly impact the patient’s choice – or feeling that no choice exists), but interpretive – helping patients determine their priorities and achieve them.  Dr. Gawande’s own father changed doctors during his terminal illness to find a doctor that allowed him to participate in decisions.
For more questions and concerns on this topic, contact the experienced lawyers at Courtney Elder Law Associates by calling 601-987-3000.