THE TROUBLE WITH DYING
A Minute with Dr. Hancur...
I learned something new this year both about myself and about life. Like so many
of my peers, I experienced the loss of a parent. Though not completely unexpected, given
that she was 86, my mother's death was nevertheless a trauma for me, my father, and my sisters, and was a process for which none of us was prepared.
The scenario was rather typical. There was chronic illness leading to increased fragility and finally, a fractured hip from which she did not recover. The trauma, however, had much less to do with the fact that she was dying and much more to do with the dying process itself and the lack of effective support provided by the primary care provider system.
As a provider of care myself, I assumed that the attending physician and the hospital staff would not only help my mother in her final days but would act as guides, of sorts, to those of us keeping her vigil. Instead, we had to keep intervening to save my mother from unnecessary and painful care routines that had virtually no relationship to the reality of her condition. After instructing the doctor that only palliative measures were desired, the hospital staff seemingly felt compelled to continue to take vital signs, took a chest x-ray (!), and was overly cautious about dispensing narcotics and other pain- relieving medications. Noise and assaultive fluorescent lighting further intruded upon the final hours of my mother's life.
It was as if the hospital staff could only see individual trees--high blood pressure, elevated-temperature, elevated white blood cell count--but was blind to the forest. We needed them to help my mother to die and to help us to be more comfortable as the hour of her death approached. Knowing her blood pressure at four-hour intervals during the last sixteen hours of her life had no value. It was only when we forced a transfer from the general hospital to a hospice facility in the last day of her life that my mother was able to die in peace with her family at her bedside in a wonderfully supportive environment.
My story did not take place in Rhode Island, but the problems my family and I encountered occur here as well. I have always subscribed to the existential notion that death is the universal fear and the basis of all anxiety. The general hospital staff was comprised of good, caring people but, despite their familiarity with death, coming face to face with it was uncomfortable enough to lead them into virtual denial. A hand on my mother's forehead would have been much better medicine than a stethoscope. Yet nurse after nurse attempted to treat my mother as if she were going to recover and leave the hospital. They saw her as a patient with isolated symptoms rather than as a terminally ill woman who would die in a matter of hours, not even days. They did not know how to handle their own feelings about death and so behaved as if my mother really were not dying.
My colleague here at Blue Cross & Blue Shield of Rhode Island, Dr. James
Burrill, is pioneering, along with others, an initiative to facilitate the identification of the
dying patient and to encourage referral to hospice at an earlier time in the dying process.
At present, physicians in Rhode Island refer patients to hospice 13 days before death,
while the national average is 24 days. While I wholeheartedly support this effort, I am
less interested in the hospice connection as I am in the recognition by healthcare
providers that sometimes helping patients means helping them to die comfortably. And of
course, this includes helping their families as well.
Behavioral health providers are not exempt and, in fact, we should be leading the
way. But we are not. We should be ready resources for the primary care system and for
families, but few of us seem willing to confront our own denial, our own fear, to stand
beside the deathbed. In fact, it has taken me nearly four months to write this although I
intended to do it in the weeks following my mother's passing.
I am not casting stones at anyone. It is my hope that by sharing my own
experience with you, it might open up dialogue and help all of us to provide the kind of
end-of-life care that our patients need.
I wrote this in 2005. In the ten years that I wrote my column, this article sparked the greatest response. No one escapes death and, along the way, we are all touched and changed by the death of someone we love. I always tell my patients to talk with their parents before death is imminent and to say whatever it is that they want to. Too many people postpone that talk and never really say goodbye-- a regret that cannot be undone.