One major benefit of
being semi-retired is that I have more time to “read” audio books each day
while I walk and exercise. This is given
me the opportunity to catch up on books I have long wanted to read (e.g.
Steinbeck’s East of Eden) as well as more current titles.
I recently read a book
that I’d like to recommend to other elder law attorneys as well as Physicians
and anyone who is interested in aging and mortality. The book is
Being Mortal:
Medicine and What Matters in the End by Atul
Gawande.
In this book Dr. Gawande explores
the attitude of physicians and patients toward aging and death. If this sounds
like a dreary reading experience, it is not. Dr. Gawande is a storyteller. His
narrative of his experiences and the evolution of his views on what is
important at the end of life is illustrated by stories drawn from the lives of
his patients and his own family. Their stories turn this serious discussion
into a compelling read.
The book recounts the development
of Dr. Gawande’s attitude toward medical interventions at the end of life. He
begins as a young surgeon who follows an informational approach to advising his
patients about end of life treatment options. He would give them all the medical
information he could, including discussion of aggressive treatment options that
had virtually no realistic potential for success. He would then ask the patient to choose.
Without further guidance patients tend to choose to keep fighting for a chance
at a cure (10 more years) through aggressive but futile treatment rather than
choosing to accept the reality of mortality. Over time Dr. Gawande came to
realize that his unguided informational approach overwhelmed his patients and led
to the infliction of treatments that increased suffering and loss while having virtually
no hope of improving or extending the patient’s life.
Through his experiences
with his patients and family members, Dr. Gawande evolved to a more realistic
and compassionate approach to counseling and treating patients with terminal
conditions. He now focuses on listening to his patients to try to appreciate
their priorities and figure out how medicine can help them attain their goals.
In his view, society and
medicine do not have a good track record at helping people through the end of
their lives. Dr Gawande overviews the history of the way our society has
treated our frail elderly and dying – from the poor houses of a century past to
more recent institutional oriented care in hospitals and nursing homes that he
feels are too focused on patient safety rather than a meaningful existence. He
tells the stories of pioneers who have sought to change the model in nursing
home care (the Eden Alternative), assisted living, palliative care and hospice.
These innovators asked a
fundamental question: How do we give meaning to the last round of life for our dying
and their families. Dr. Gawande suggest that our emphasis on a medical-curative
approach often robs our frail and dying of the opportunity to find meaning in their
remaining days.
According to Gawande the Medical profession
often makes the mistake of fighting for a longer life rather than for a better
life – a life that has meaning and richness for the terminally ill. An overly
medical approach can impoverish the end of life and cause useless suffering. It
can even shorten the patient’s remaining time.
We teach our physicians
how to treat their end of life patients by providing drugs and procedures rather
than how to care for them. Caring involves listening and observing and
determining the patient’s priorities. What makes the patient’s life worth
living? How important is it for the
patient to avoid suffering, spend time in valued activities, or attend that
daughter’s wedding? Will a potential intervention interfere with the patient’s
priorities or lead to avoidable suffering? Our medical orientation is to do
everything possible to extend life, not to ask what can we do to help the
patient have their best possible day now given the limitations of their aging
bodies and the waning of their lives.
Change is coming, but
only slowly. It is true that more people are dying in hospice care. But Geriatrics
is relatively low paid and lacking in prestige. And political polarization
stands in the way of changing our approach to end of life. It was incredibly
difficult just to get doctor/patient discussions about end of life authorized
by Medicare. It was caught up in an irrational political controversy about
“death panels” And in Pennsylvania we have struggled to pass legislation to
provide education and training about Physician
Orders regarding Life Sustaining Treatment (POLST). We are afraid of death
and it shows. But death is part of being mortal.
It is hard to disagree
with Gawande’s conclusion that we have over-medicalized and stripped meaning
from aging and dying. As care providers,
aging professionals and advocates we need to do a better job of listening to
our patients and allowing them to write their own story’s last chapter. Gawande’s
Being Mortal provides a strong argument for change
