"I am afeard there are few die well that die in a battle," said the soldier to Henry V.
And I am afraid that, sadly enough, many of today's battles are being fought in nursing homes, where fewer and fewer die well.
The mounting pressures that permeate medicine -- legal issues, finances, time constraints, many others -- tend to militate against care and empathy for patients. Too often these days, when some medical professionals strive for comfort and compassion, it's not for the patients -- it's for themselves.
My wife's mother died last year at age 90 after four years of declining health. She had lived an active, upbeat life until a year before we finally had to move her from the city of her birth into an assisted-living facility. She spent two years there, and the final two in an excellent nursing home. Gradually, she became so physically incapacitated that she needed round-the-clock care from private aides.
As time passed, speaking coherently became increasingly difficult for her, but, almost to her final hours, she could comprehend most aspects of her daily life. My wife, who saw her nearly every day during those concluding years, was able to understand her mother's thoughts and feelings and to communicate with her, even when nurses, aides and physicians could not.
A physician whom we knew well took on the care of my mother-in-law and stayed with her until six months before her death, when he retired. Then we turned to a younger doctor, someone who looked after many of the other patients in the nursing home. He came highly recommended and remains well-regarded to this day by his patients.
From the start, he seemed to be in a perpetual hurry. On the occasions when he spoke with my wife, he repeatedly labeled his new patient as having "senile dementia," and in our eyes wrote her off as a helpless and hopeless "case."
From our vantage point, he could have done a better job of managing her decline, although I'm not suggesting that there was malpractice of any sort. To us, his care verged on being insensitive and of a quality that one would not wish for anyone's parents when their time comes.
As far as we could tell, he never got to know his patient as more than a bedridden body with "senile dementia." His frequent use of that diagnostic term offended and hurt my wife, however technically correct it may have been. Her mother's former physician had used a phrase my wife had found less denigrating: "the end results of repeated TIAs," an abbreviation for mild strokes. My wife believed, too, that the new doctor thought -- incorrectly, in her view -- that her mother could not understand much of what was happening to her or what was said in her presence.
The new doctor also seemed to assign much of the responsibility for his patient's care to the nurses, aides and the physician assistant. We can't recall his ever asking to meet with my wife to discuss how she thought his patient would wish to die.
Fortunately, the aide hired by my wife to see her mother through the late afternoon and early evening hours was competent, kind, caring, devoted and full of common sense.
The most troubling events occurred during the weeks when it became evident that my mother-in-law was dying. Her muscles tightened, perhaps due to the recurrent small strokes, and her joints became twisted. My wife and the aide saw that she was often in pain. She also let my wife know that she was anxious and deeply troubled. To relieve her, the doctor ordered a medication. But the dose was very low and was to be given only at the discretion of the nurses.
As the situation progressed, it became clear to us that my mother-in-law was not receiving enough pain medication. Although I am a doctor and have cared for plenty of patients in my time, some of the shift nurses told my wife that we were mistaken: The pulse rate and breathing pattern, key indicators that they used, showed that she was receiving adequate amounts. They said, too, that they had strong feelings about avoiding overmedication, and they appeared to discount my wife's assessment that, despite the clinical numbers, her mother was fearful and in pain.
We brought in people from hospice care and, after evaluating the patient, they advised round-the-clock intravenous pain medication. Without seeking us out to discuss it, the doctor did not follow their recommendation. A month later, as we continued to press for more medication, he suggested that he and my wife should take the matter to the ethics committee of our nearby hospital.
We never learned why the doctor turned to the ethics committee: whether for legal, moral or other reasons. In any event, it was another two weeks -- two long weeks -- before the committee, composed of 15 lay people, internists, psychiatrists, nurses, members of the clergy and others, could not our case.
At the hearing, the senior nurse from the nursing home said that some members of her staff felt uncomfortable about giving that much medication to the patient. My wife, speaking movingly and eloquently, stressed that the issue was her mother's comfort, not the comfort of the nurses. My wife suggested that those who felt uncomfortable might want to recuse themselves from her mother's care.
Her mother's doctor told the panel that he depended on the nurses to look after his patients in his absence and thought he should respect their feelings. A lay member of the committee responded that the patient's care -- not the nurses' feelings -- was his first responsibility. An internist member pointed out that my wife, having looked after her mother for four years, was a far better judge than the nurses and the doctor of whether she was frightened and in pain.
At the end of its hearing, the committee advised unanimously that the patient should be placed on the more intense treatment program recommended by the people from hospice care. Having brought the matter to a head, my mother-in-law's physician now seemed obligated to order the recommended continuous intravenous morphine drip, and he did so. But only after 24 hours went by.
My mother-in-law died about three weeks later. That night, a covering physician, someone whom we did not know, saw her and signed the death certificate. The next day, my wife received a condolence call from the retired physician who had once been her mother's doctor. She has never heard from the doctor in charge of her mother's care.
I do not write this in anger, as an unforgiving tirade about the behavior of a particular doctor. I write it in sorrow that some physicians who work in nursing homes seem not to know how to care for dying patients. They need to realize that pain comes in many forms, emotional as well as physical. They need to understand that relieving pain, and helping a patient die in peace, is more important than not affronting the nurses. They need to listen to the thoughts and concerns of the family. They must learn to grasp that, in the last scene of a life, the patient's comfort comes before the comfort of all the other players.
Why did my wife not encounter similar problems with the first physician? Who can say for sure? Both doctors had to cope with the pressures and challenges of practicing medicine in today's environment. Perhaps by virtue of experience and maturity, the older physician was still up to the task of putting his patient's interests above those pressures, whereas maybe the medical care environment had begun to erode the compassion that had drawn the younger one into the profession.
Going to one's death in fear and anxiety may not be listed in the coding table for reimbursable medical conditions, and it may not rank in urgency with other problems, such as 42 million people without health insurance, medical errors caused by insufficient nursing coverage and dysfunctional information systems, doctors quitting medicine prematurely or refusing to work with for-profit HMOs or Medicare, and the pending implosion of the medical care system.
But it touches on the soul of medicine.