Good and Old
The solution to my dilemma was staring me in the face: if I didn’t find the new
developments in medicine of sufficient interest to blog about, and if I didn’t think my readers
—a motley collection of people interested in aging—would find those developments of great
interest either, I should write about great books. I would re-read the books that influenced
my thinking twenty or more years ago. After all, just because the ideas in those books have
become integrated into my world view, just because I take them for granted, doesn’t mean
they are trite or passé. Nor should I assume that most people, particularly the younger
generations, are familiar with those seminal ideas.
I first realized that not everyone who cares about old people—not even everyone
trained as a specialist in caring for older people—has read what I consider the great works
of geriatrics, whether books or essays. Several years ago, I was giving a talk to a group of
well-educated, exceptionally smart and ambitious young doctors and I mentioned the
longstanding disconnect between the kind of care patients say they want near the end of life
and the kind of care they actually get. I traced the history of the recognition that such a gap
existed and reviewed the early strategies for overcoming it, so of course I referred to the
SUPPORT study. The faces of the well-educated, exceptionally smart and ambitious young
doctors looked blank. Hesitant to go over well-trod ground, but not wanting to make any
unwarranted assumptions about what my audience knew and what they didn’t, I asked how
many of them were familiar with SUPPORT. Not a single hand was raised.
The SUPPORT (The Study to Understand Prognoses andPreferences for Outcomes
and Risks of Treatments). The study was a large, randomized trial conducted at 5 U.S.
hospitals and involving over 5000 very sick patients, people who had one of a handful of
conditions and a high likelihood of dying within the next year. Phase I of the study
established that a majority of these patients, provided they were informed of their prognosis
(which few had been) favored certain limitations of treatment but that only a minority
received treatment that accorded with their wishes. Phase II of the study showed that when
specially trained nurses told patients their prognosis, elicited their preferences, and
transmitted those preferences to the attending physician, the lack of concordance persisted.
As an intervention trial, this multimillion dollar, Robert Wood Johnson Foundation supported
study was a resounding failure. But as a descriptive study showing, for example, the
proportion of seriously ill people who died in pain or despite invasive technology, it was a
landmark work. And the failure of the particularly remedy was also illuminating.
SUPPORT is now 25 years old but it was crucial to all subsequent work in the area
of advance care planning, It defined many of the norms by which “good” end of life care
would be measured. It launched the careers of numerous researchers who struggled to
understand why SUPPORT flopped, on the one hand, and how to achieve its aims in the
future, on the other. The truth is, we are still today trying to figure out how best to explain to
patients the way their diseases are likely to unfold, what their options are, and to help them
translate their personal values into a viable treatment plan.
Ignorance about SUPPORT is no anomaly. Last month, Daniel Callahan died, one of
the giants of American biomedical ethics. I am old enough to remember reading his
controversial book, Setting Limits, when it first came out in 1987. At last, I recall thinking, a
philosopher who is not floating in some abstract universe of ethical principles, but who is
grounded in clinical reality. I also remember browsing in my local bookstore, which
somewhat bizarrely shelved its books according to publisher, regularly seeking out the
Simon and Schuster section, eagerly awaiting Dan Callahan’s next book. I read them all and
eventually I got to know Dan Callahan himself, as kind, generous, and modest as he was
insightful and path-breaking. So, I was shocked and dismayed to realize that young
physicians today, even those with a background and interest in ethics, typically know that
Daniel Callahan co-founded the Hastings Center, the foremost American biomedical ethics
think tank but have never read Setting Limits.
So we come to the new plan: I will write about the classics. Not the Iliadand the
Odyssey. Not IL Nascher’s book, Geriatrics: The Diseases of Old Age and Their Treatment,
which laid the groundwork for a new field but which is now hopelessly out of date. Instead, I
will peruse my own bookcases and write about those books that deserve to be read and re-
read. I will get to Setting Limits soon. But the first book I’d like to blog about was not written
by a geriatrician or a philosopher nor a historian, but by a novelist. It’s Patrimony by Philip
Roth and it’s one of the finest depictions I have ever encountered of frailty, on the one hand,
and of the perils of medical decision-making on the other. It is one of Roth’s only forays into
non-fiction and in it he tells the story of the final year in the life of his father, Herman Roth.
Reading this fine book now is particularly poignant because Roth Senior was 86 in the
narrative and Philip Roth, the son, died a year ago at age 85.
WhatPatrimony is really about is the relationship between a father and a son, which
may not seem like a geriatric issue. But from my perspective, relationships are the
quintessential geriatric issue. One of old age’s principal challenges is to find meaning in life,
often in the face of loss, illness, and disability. One of the principal sources of meaning is
relationships, and what relationship is more profound than that between a parent and child.
What makes Patrimony so special is that Philip Roth, who sounds as though he had for
years found his father endlessly annoying: he was not an intellectual, he had a habit of
constantly correcting and cajoling those he cared about, and he simply wasn’t interested in
the same things as Roth Junior. But over the year that Philip shepherded his father from his
brain tumor diagnosis to his eventual death, he came to accept his father’s foibles and to
appreciate his strengths. It is with affection and understanding that he reports his father’s
penultimate question to the neurosurgeon he saw in consultation about the tumor: “What do
you use to go in there? Do you use General Electric or Black and Decker?”
The book shows us how painful loss is—and why we are so reluctant to let go. When
driving from New York City to Elizabeth, New Jersey, where his father lives, a route he has
taken countless times, Philip Roth makes a wrong turn and ends up at the cemetery where
his mother is buried. He visits his mother’s grave and we see that though he is a famous
author, financially successful and, at least during the writing of the memoir, enjoying a
fulfilling romantic relationship, his mother is still “Mommy.”
Roth the novelist is known for raw and explicit details, usually in the sexual arena. In
Patrimony, he is raw and explicit in his description of his father’s difficulty chewing and
swallowing and of a bout of incontinence. He shows the devastating loss of dignity that
makes frailty so difficult to endure—and how acceptance of his father, despite his difficulties,
is the way to transcend frailty.
Finally, Roth’s book shows how the medical profession pushes patients and families
toward aggressive treatment. Surgery to remove Herman Roth’s tumor is variously
described as requiring an 8- or even 10-hour operation or two multi-hour procedures, either
way, an unequivocally major ordeal. But surgery, from the medical professional’s
perspective, offers the only path to improvement, though the likelihood of achieving
improvements is not great and the chance of surgery making things worse is considerable.
As the story unfolds, the Roth family gradually come to see that the best course of action for
the 86-year-old Herman is supportive. There’s even a poignant acknowledgment that
advance care planning is often harder for the family than for the patient: Philip Roth
struggles for days to discuss a living will with his father. He says it was harder for him to
broach limiting treatment than it had been to talk about the brain tumor diagnosis. With the
tumor, he could behind terms such as “benign,” ignoring the reality that even non-malignant
growths can cause plenty of mischief and conveniently neglected to mention that the tumor
was enormous and had already encircled a major blood vessel in the brain. When Roth
finally does raise the subject of advance planning, he finds his father is matter of fact about
the process and quite comfortable with setting limits. Herman had sold life insurance for a l
iving; he had “spent his life time talking to people about the thing they least wanted to think
about.” So, even though Herman Roth can’t resist hoping for “another couple of years” and
then, by the time he goes for a second opinion, for “3 or 4 years,” he’s a realist and knows
that the end is coming. As he says, once he’s dead, he won’t have anything to worry about.
It is his son who will suffer afterwards, who will continue to feel love, affection, respect—and
Patrimony is a geriatric masterpiece. First published 28 years ago, it is not in the
least bit dated. Father/son relationships, frailty, advance care planning, and death are all still
around and always will be.
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