Before
Their Time:
Peter
A. Selwyn
This brief essay has a much more personal note than the scientific papers
that I have written about AIDS, because I have come to understand that it is
precisely through one’s own relationship with death and loss that a patient
can be most helpful to patients who are facing AIDS and other life-threatening
diseases.
In 1984, when the first wave of the AIDS epidemic was beginning to
overwhelm the vulnerable population of drug injectors in the South Bronx, I took
a position as the medical director of Montefiore’s drug abuse treatment
program there. It felt as if we were witnessing the arrival of the plague, as
tens and ultimately hundreds of patients became critically ill and quickly died
from this disease whose course we could do very little to affect. Unlike the few
of my earlier patients who had died of other causes, these hundred of patients
were virtually all in their early thirties, almost all of them within five years
of my own age. They also included many women, some of whom I attended during
pregnancy and the birth of their children. These young families seemed to
represent some sort of terrible anomaly in the usual patterns of the life cycle,
an anomaly in which death seemed to have crowded out life and cruelly and
painfully destroyed the family, often over generations. These events were
particularly compelling to me since the pregnancies of my wife and the birth of
our two children occurred during those same years. I would sometimes share
stories with the women about my wife’s pregnancies, the birth and early
development of our children, and then watch helplessly as these same women
became ill and died, sometimes preceded by their infants. For the uninfected
children, orphans of the epidemic, we began to see a steady stream of
grandparents, themselves often weathered by life and their own struggles, coming
forward to care for them after having watched their own children died of AIDS.
Surrounded unexpectedly by so much suffering and death, I was for a time
oddly unaffected by it emotionally. I felt a strong need to be doing this type
of work, although I could not have articulated what this need was about, and I
found a great satisfaction in being with my patients. On a certain level,
however, something was missing for me. Elisabeth Kubler-Ross, who has been one
of my most important teachers, has said, “You never cry for anyone else, you
only cry for yourself.” I have learned that the greatest gift that I can give
to patients is to allow the awareness of my own pain and loss to deepen my
solidarity with them as they face their illness and death. I am now convinced
that it is the physician’s fear of death, and his or her own unexpressed
grief, that are the biggest impediments to true empathy, and result instead in
pity, despair, revulsion, and the kind of numbling detachment that finds refuge
in technological interventions and narrow medicalization.
Before our current therapies even existed, we coexist with patients in
the grim but complete knowledge that all that physicians could do was to be
there, to bear witness, support, comfort, and accompany patients through their
illness. What enabled, or even entitled, us to do this was simply our commitment
not to abandon the patient and our experience in traveling this road with others
before. I believe that his fundamental connectedness with the patient best
characterizes the history of the physician-patient relationship over the
centuries, until powerful forces over the past decades fragmented and distorted
it, often in the name of specialization, expertise, or increasing technical
sophistication. At times it has been disturbing to observe how the rapid
introduction of medical intervention for AIDS has resulted in some ways in the
tendency to over-medicalize the disease and lose sight of the important
fundamental dynamics of life and death that still ultimately define it. I can
only hope that the advent of the therapeutic era for AIDS, while early awaited,
does not have as a consequence the loss of empathy and the doctor’s
willingness simply to be with the patient, when instead one can find solace or
distraction in pharmacological protocols and technological tinkering.
It has always seem ironic to me how those who are confronted with dying
are much more aware of living, and, in some cases, able to live in a much more
immediate and intense way than those whose daily lives are dulled by the
unconscious assumption that time is unlimited. Many patients have told me that
having AIDS has allowed them, required them, to dispense with all of the
superficial distractions and wasted energy that take up so much of our
attention, and has led them to focus on what was truly important in their lives.
One patient said to me, “AIDS is kind of like life, just speeded up.” This
anecdote describes well the accelerated process in which, over a period of weeks
to months, people with AIDS may have to confront issues in the life cycle that
normally would have taken years to decades: the deaths of peers and family, the
loss of physical and sexual functioning, deterioration in cognition and memory,
and the effects of aging on one’s bodily appearance.
Ultimately, for both patients and physicians, AIDS is about letting go.
Only through a process of letting go of fear and blame, and through an
acceptance of our own vulnerability and powerlessness, can we become truly
powerful. Only in this way can we go beyond the artificial distinctions between
physician and patient to get on with the process of living and dying that all of
us have to confront. Elisabeth Kubler-Ross has said, “Nobody gets out of this
life alive.” I think the avoidance of this reality often impedes physicians’
ability to be effective in truly caring for their patients.