Our End of the Conversation
By: Dr. Barbara A. Olevitch, Ph.D., a clinical psychologist and author of Life
is a Treasure: The Jewish Way of Coping with Illness.
As Jews, we have a unique perspective. We believe that our lives belong to Hashem and
that we are entrusted with taking care of them. We rely on our expert doctors and Rabbis to help
us figure out what our health care obligations are at any given moment.
In our society, however, there is a different view. The rule in our health care institutions
is that the patient is the owner of his own body and that the patient’s “wishes†reign supreme.
It might seem at first glance that there is no problem here. If the patient’s “wishes†reign
supreme, and if a Jewish patient wants to follow Jewish law, then that should be his privilege in
America, right?
However, in reality, there is a problem, because there is a campaign going on to influence
the patient’s “wishes†in the direction of refusing medical care.
A recent Institute of Medicine report called Dying in America strongly urges all doctors
to repeatedly try to get their patients, even young patients, to sign advance directives limiting
their end-of-life medical care. In fact, there is even an element of coercion – it is suggested in the
report that all doctors, whatever their specialty, should be trained in having these kinds of
conversations with their patients in order to be recertified.
In this report, it is definitely implied that limiting end-of-life care is the most desirable
option. Those patients who do not wish to limit their end-of-life care are seen as being ill
informed or irrational.
Dr. Angelo E. Volandes’s new book, The Conversation: A Revolutionary Plan for
End-of-Life Care, is an opportunity to glimpse inside the mind of one of the doctors who has
embraced this approach.
In his position as a hospitalist doctor, he might have interpreted the patient autonomy
policy in a simpler way. He might have felt that he was fulfilling his obligations by finding out
from the patient and the family and the medical chart what the wishes of the patient are.
However, he has a different standard for himself. He thinks it is his job to influence the
patient’s wishes. We can see how he relates to his patients who have illnesses that he considers
terminal. He gets close to them and their families. He calls this process The Conversation. He
discusses with them what activities in their lives they felt were meaningful in an effort to
persuade them to consider whether the meaningful part of their lives may be over. If they are not
persuaded, and if they end up choosing a lot of aggressive medical interventions, he feels terribly
guilty. Years later, he is still asking himself whether this was really what the patient would have
wanted and whether he could have gotten the family to refuse this care if only he had worked
with them in a different way.
As he reveals in the book, what he calls The Conversation was not sufficient to talk
many of his patients out of aggressive medical interventions, so he embarked on a project of
making videos to show them exactly what these medical interventions look like. He now shows
these videos to his patients and has been more successful in getting them to decline these
treatments.
What is his guiding principle? He states that “a good life deserves a good ending.â€
His ethical feeling is based on an aesthetic model. A person is the author of his own life
story. He feels that a human life consists of the activities that gave the person joy. Clearly, the
patient in the ICU about to breathe his last can no longer engage in these activities. To Dr.
Volandes, this means that his life is over and it is time for the ending.
To Dr. Volandes, a good ending for the patient means to be surrounded by family and
friends, not to be worked on by a team of doctors and nurses who he never met before.
But wait a minute. Is he going to save these conversations and videos exclusively for
families whose loved ones are definitely just about to die?
Some of the cases that Dr. Volandes selects as illustrative cases for his book have
advanced cancer. For these patients, it tends to be clear when they might be dying. They have a
good chance of planning their deathbed scene. They can gather their families together and say
good-bye or go home and read poetry together, whatever they want.
But patients who die of other kinds of problems don’t fit this model. In 1999, Fox and her
colleagues published a paper about patients with heart, lung, or liver disease in the Journal of the
American Medical Association saying that, in contrast to patients with “incurable metastatic
cancer,†patients with chronic organ failure “never experience a time during which they are
clearly dying of their disease.†They get worse at times and have to be hospitalized, but it is not
clear which hospitalization will be the last. They often die suddenly and unpredictably.
If a patient with heart, lung, or liver disease were to accept Dr. Volandes’ philosophy and
make having a “good ending†his uppermost priority, and if he would see his life like a novel
that he is writing, he might want to take one of his earlier hospitalizations as an opportunity to
refuse care and opt out before things get too bad. Who would want to read a novel where the
main character was hospitalized again and again for hundreds of pages? It would be a better
novel if the last few hospitalizations were edited out, not just the final one.
Dr. Volandes’ description of his meetings with the family of an 84 year old woman with
dementia who was dying of a massive infection shows how he uses his model of the “good
endingâ€.
When her family tells him that she took joy in cooking, he asks them, “Did you ever talk
with Nonna about what she would want if she couldn’t cook anymore?â€
When her family wants a feeding tube, he tells them that it won’t cure her Alzheimer’s
disease. He ignores the fact that she still needs nutrition and makes it sound like their desire for
the feeding tube is irrational.
“I understand where you are coming from. We express our love for people by nourishing
them,†he says.
Dr. Volandes does not seem to be concerned about the possibility that his Conversations
about the “good ending†and the videos would cause patients who were still treatable to pass up
their treatments and die sooner than they would have!
Dr. Volandes begins his book in a way that may elicit agreement from the reader – he
begins with a case where the patient has advanced cancer and his suffering is not really fixable
and the medical intervention is painful and is not expected to help. But as he continues, we see
that he applies his concern about the “good ending†to other patients whose suffering might be
more fixable.
Dr. Volandes talks about a patient named Mr. Sanchez. He tries to persuade his Mrs.
Sanchez that her husband, who had to use a ventilator in a previous episode of his illness, would
not want this again.
She cries and she says he never told her that he didn’t want to be treated. She and Dr.
Volandes were in disagreement. This conflict was resolved when his daughter came in from
Puerto Rico and decided that he should be treated.
The previous time he was treated, what were his complaints? Did he find the ventilator
experience painful? Was it his symptoms that he complained about? You may find this surprising
but what he complained about was that there were no Spanish-language television channels at the
rehabilitation facility and that he couldn’t watch his soccer games. Also the food was bland.
Dr. Volandes is still wondering if he should have contacted the daughter in Puerto Rico
and had The Conversation with her at an earlier time. He still imagines Mr. Sanchez accusing
him of doing the wrong thing.
As Jews, we have separated ourselves to a certain extent from our surrounding society.
We eat at kosher restaurants. We don’t have to have a dialogue with a cook who knows nothing
about kosher food. We send our children to Jewish day schools. We don’t have to explain to the
teachers not to teach other religions to our children.
But in health care institutions, we are increasingly subjected to these “dialogues.†We
believe that if a patient’s body and soul are still together, then his life still has holiness and
purpose. In contrast, Dr. Volandes believes that if the patient can’t still engage in high-level
activities, then he has no more purpose. Sick people are very vulnerable and can be easily
convinced to give up, especially if they are shown realistic medical videos. Not everybody is
able to tolerate the sight of medical interventions. The disturbing thing is that Dr. Volandes has a
lot of like-minded collaborators and they are actively training more.
If the patient is awake and alert, his previously prepared document specifying his family
to make his decisions according to Jewish law hasn’t yet come into force. If the doctor persuades
him that he has no need to continue, there isn’t much that the family can do.
How can a Jewish patient respond to a hospitalist like Dr. Volandes when he starts what
he calls The Conversation? It has to be clear that we want to be treated according to our belief in
the sanctity of life. The doctor has to understand that this is the activity that made our lives
meaningful – appreciating Hashem’s gift of life. We value being alive. We value breathing.
These are gifts given by Hashem. If we can’t cook any more, it’s okay. If we can’t dress
ourselves, it’s okay. If we can’t speak, it’s okay. We want to live, and our loved ones who can no
longer speak still want to live.
We’re not just asking for a token attempt at resuscitation when we collapse. We want to
hold off that collapse as long as possible. If one antibiotic doesn’t work, we want to try another
one. If it’s not clear what’s wrong with us, we want the top specialist.
For a Jewish patient, a “good death†doesn’t mean that the last half hour of his life has to
be his best half hour. He doesn’t have to be at home. His friends don’t have to be there. It means
that he died at his time, not before his time, and that he died, as it says in Pirkei Avos, against his
will, and certainly not on purpose!
As Jewish citizens, perhaps we can make a contribution here. How can we get more
support for treating patients? How can we reduce the number of people who feel that medical
care is traumatic? Can we find ways to circulate the idea that we do not have to take the low
quality of life of patients for granted, that many quality of life problems are actually fixable?
Mr. Sanchez felt like a prisoner in his rehabilitation facility. This is not an unusual
feeling. What can we do to give patients a better quality of life, so they won’t feel like death is
preferable to being stuck in a health care facility? People are people, and they don’t like to eat
the same food every day, and they desperately need a bit of distraction. Instead of assuming that
quality of life is too low and helping patients to die, our society could do a lot more to raise their
quality of life. If doctors are going to be making videos, then how about some cooking videos for
Nonna and some Spanish-language soccer videos for Mr. Sanchez? How about some tastier food
for hospital and nursing home patients? These would be ingenious out-of-the-box medical
interventions. The problem is not that we do CPR, it’s that afterwards we treat the patients in
such a way that they feel imprisoned, isolated, and bored. Even a patient on a ventilator can be
taken outside for a walk. Making it our society’s priority to treat them with more respect and
keep them happier would go a long way toward relieving the stress upon them and their relatives.