A CHILLY, GREY DAY at year's end.
Holiday decorations festoon the hospital corridors. A delivery man hurries into the elevator behind me, his arms loaded with evergreen and poinsettias. Sounds of parties downstairs echo in the elevator shaft.
My colleague is shaking his head, looking downcast, as we step out. "It's happening again." he says. "Every year it seems I'm taking care of a bunch of little old men and ladies who come in here to die right at the holidays. It's depressing. And I keep wondering, why now? You'd think they'd enjoy being home with their families during this season."
I, too, wonder about this end-of-the-year phenomenon. Are these people who have come into the hospital now to die more in tune with the meaning of winter and the year's dead end than most of us? This dark, quiescent time came, after all, long before our celebrations. Maybe it's not that people are choosing the holidays as their time to face eternity. Maybe it's the other way around -- we created our holidays to bring some warmth and life to this time of death.
I certainly know what he means, though. Just this morning, a frail elderly woman on my service finally found a way to tell the intern who cared enough to listen in the middle of the night and me what she wanted done if her heart should stop beating. Some in the family have asked her to let us try to save her. She doesn't want to displease them, but her own sister's peaceful death not long before had appealed to her very much. She had had a dream, she said, and in it, "There was a road with a fork in it, and a sign on the right that said Pearly Gates. A voice said I should go to the right, and that's what I want to do."
This morning, we'll try to help them accept it. For us there is no choice. As long as someone is not severely impaired by drugs, depression, pain or mental illness, we accept their decision absolutely -- as a last right -- whatever we think ourselves.
I know that at home Annie is patting mounds of gingerbread dough and poking at it with the cookie cutters I've enjoyed collecting over 10 years -- gingerbread men, hearts, stars and moons.
I know the warm kitchen contains not only my excited, aspiring 22-month-old cookie decorator, but strong coffee, a good bottle of sherry, and Grandma visiting for the holidays. Yet I find myself lingering at the nursing station over my patient's chart.
I'm trying once again to cope with that old nemesis, death.
If anything makes medicine different than most other lines of work, it seems to be the inevitability of meeting death, week in and week out. Even when it comes as a welcome relief, I grieve a bit, sensing my own mortality each time I'm involved intimately with someone who is dying. Other times the process is pure agony and it takes all my protections and defenses -- my role as a doctor, what little I know of faith and of philosophy, Annie's joyful energy -- to be able to confront death with someone who needs my support.
The obvious part of the problem is that doctors are trained to save lives, to fight disease aggressively, to maintain hope. Death is, by that set of rules, failure. Intellectually, we know that death is inevitable, but we're loath to be resigned to it.
Less obvious is what we should do when there is no longer a role for the healing we've been taught. Who do we become when the rescue mission has to give way to more subtle concerns like giving comfort and doing no harm? And how do we ourselves learn, and find the strength, to cope with caring for dying people?
Helping the dying means finding a way to reconcile ourselves to death, to share to some small extent what it feels like to go that way before we ourselves have been called, and it does not come easy. Our most immediate, primitive human reactions may be paralyzing. We may freeze, we may turn away, we may forget everything we've learned. But if we don't learn as doctors how to deal creatively with these reactions, how can we cope with the needs of those for whom we care?
"I happened to be in the hospital room when a patient I did not know suddenly suffered an arrest, and a resuscitation effort began," a friend tells me. She practices medicine and teaches biomedical ethics in the medical school. "The person died, and everyone matter-of-factly left the room -- except a medical student doing a two-month rotation on the ward. He just stood there as they all filed out. I left, too, but I was concerned about him, and came back a few minutes later. He was still standing there alone. I took him out, and he collapsed in my arms and cried for half an hour.
"What he said was what we often hear from someone new to this and feeling terrible -- he felt it was all his fault. If he'd just checked one more blood potassium level, if he'd just done something different the person might have lived. I was able to comfort him, to help him, but the appalling part was that at the end of the rescue attempt, everyone else had thought that the job was done. They'd failed to save the victim in the bed. That wasn't so bad. It happens. But they didn't even notice that there was another victim in the room, one who could be helped."
The student with whom my friend talked was lucky. So had I been as an intern at the Veterans' Hospital. A compassionate doctor sat up with me most of the night after the sudden death of one of my patients tore me up. I was even luckier in the next two years. I was able to work each week in the office of a doctor whose sensitivity, honesty and compassion with the cancer patients for whom he cared I've tried to emulate.
But not everyone new to medicine is so lucky. Those who get no help end up coping as best they can. Some find the strength to manage well. Others become hardened, or despairing, or they choose a medical specialty in which they will not have to deal with death often. Others turn out to be the doctors about whom people in and out of the profession complain -- the abandoning physicians, those who avoid the dying, who turn over their care to a specialist and never call again, who ignore people when they are most needed. Or they seem to listen, but don't hear.
For example, a writer, considered a brilliant raconteur, had been diagnosed several days earlier to have an inoperable pancreatic cancer. He sat talking with a nurse-clinician who makes comfortable people we can't cure. One of the house staff walked by.
"How are you feeling today?" he asked cheerily.
"I feel just great," the man answered, the irony evident.
"Oh, that's wonderful, just wonderful," the resident replied, hurrying on.
"You're casting your pearls before swine," the clinician commented to the patient, succinctly.
The staff doctor meant to be friendly. He may have been involved only indirectly in the sick man's care, and may not have known a diagnosis had been reached. But he asked a question, and did not hear the answer. He failed to recognize what may have been the despair behind the reply. Like all residents and interns, he was doubtless stressed and overworked. And perhaps he was unconsciously screening out what was too painful to hear. But it came across as a failure of caring.
Sometimes too much caring is the problem -- particularly if it masks our old,
irrational sense of guilt that we may not be doing everything humanly possible to save someone. We are not, as doctors, initiated in some extraordinary way that lets us bring a mystical authority to aiding the dying. We're only human. Guilt can drive doctors to inappropriate extremes of treatment -- treatment that may take a human toll far out of proportion to its benefits.
I am still pained and perplexed by my own care some time ago of a man whose chronic problems -- high blood pressure and heart trouble -- were complicated by a broken bone, pneumonia and a series of disabling infections. That's really too many strikes against a fragile human organism, although it's not hopeless. A few people rally from worse.
This man, in his early 60s, never suggested that he didn't want us to do everything to save him. And I asked him about it more than once over the course of his hospitalization. So we tried. But the cards were stacked against him, and he suffered one complication after another. Some were side effects of the medicines with which we treated him; others were caused by poor nutrition, prolonged confinement to bed and severe depression. He became progressively less communicative. But his wife wanted everything done for him -- and she was an articulate and passionate spokeswoman.
As the months dragged on, he wasted away. By the time he stopped breathing, all I wanted for him was that he not suffer any longer. But that was strictly my personal reaction. No one among the multitudes of people who participated in his care could really say any better than I whether that long hospitalization -- it cost more than $150,000 -- ought to have happened, or what its benefits were. I came away from the experience unhappy, and uncertain about what I could have done differently.
We worry -- in generalities -- about appropriating so much precious time and money to what turns out to be a lost cause, and we try to do things right. But it's one thing to talk in generalities, and another to be intimately involved with people who want that kind of care. Who can put a price on human life?
My loneliness during those months was extraordinary. Most of us in practice work with poor emotional support systems at best. I dragged myself to work for weeks, scarcely able to bear that daily encounter because it seemed so futile to me. I felt I was doing the dying man no good, but was unwilling to abandon either him or his wife. The price -- in pain -- was great. It is not death that provokes that reaction. It's the frustration of having to deal with dying that is not occurring by the standards that feel natural and comfortable to the person providing care.
George Washington medical students get their first exposure to death and dying long before they enter the hospital. There are formal sessions to discuss how decisions ought to be made about terminating life-sustaining care. But more important, there are meetings that include a member of a bereaved family telling the students what doctors do well and do badly. Once those in training reach the wards, however, what they learn about how to cope with death and dying is much less predictable.
Imagine the third-year student who comes out of a patient's room, complaining to his resident that he cannot get the tube of blood he was sent for -- the needle is in the vein, but nothing seems to come out.
The resident looks into the room, holds the patient's hand for a moment, then turns to the student. She says, "I think we'll just stand here with this gentleman for a few minutes. I don't think we need to draw this blood now."
"You mean you don't want it after all?" the student asks, confused.
"No," she says. "I think this gentleman has just died, and we don't need to do anything but to be with him here for a few minutes."
The student looked astonished, then burst into tears. It was his first experience with death. If he'd been much less lucky, the resident might have told him how dumb he was to try to draw blood from a dead man, and asked him if he didn't have the good sense to look at his patient. He might have survived that, but chances are he'd have passed along the favor and some other medical student down the line would associate his own first experience with dying with shame and embarrasment. And later, as a doctor, would avoid it or become calloused.
The same doctor, when she was an intern, used to be called, as we all were, into the rooms of people who had died at three or four in the morning, to pronounce them dead. Others of us cringed, girded ourselves, marched in and did what was required -- afraid, because at 3 in the morning, alone and fresh out of sleep in the presence of death, it's hard not to be afraid.
She, on the other hand, used to sit down in the room, next to the bed, and have a brief chat with the deceased. "It was so impersonal, you know. Here I was with people I'd never even met, and I was declaring them dead. So I'd talk with them a while. Ask them what their lives had been like, or "How does it feel to be where you are now?' Then I felt better about it -- it wasn't so anonymous."
It was the first time I realized that the anonymity of dying might be as painful for the care-giver as for the sufferer.
There is a different quality to the poignancy -- or pain -- a care-giver accepts in knowing and working intimately with people who are dying. Pat Virden, the nurse-clinician who cared for that writer with pancreatic cancer, works with the Cancer Home Care team at George Washington.
Virden grew up wanting to be a nurse, but postponed training while she raised a family, and came back to it over 40, old enough to know her own mind. Then she went to work:
"In the hospital, I quickly realized that while I could give great care to one or two people, and very good care to a few more, I gave rotten care to 15 at a time. I hated everything about the hospital. When I had the opportunity to take a dying patient home and to care for him, knowing it was what he wanted, I was amazed at how good I felt about myself. I'd always left the hospital feeling like the sorriest person in the world. But now I love my work -- there's always something I can do, and I seldom leave a home without feeling I've left things better than when I came. I felt so helpless in the hospital, but now everything I do helps," she says.
This woman's work is far from easy. She is on call 24 hours a day, seven days a week, working in a group of three people who provide care to those who are dying, and cannot be cured. She visits them regularly at home, and makes herself available for emergencies. There are times when she suffers through three deaths in a week. But she does not feel depressed or futile; she feels good about what she does.
Part of the reason is that she doesn't face the conflicts doctors do. She is not trying to save a life. Her work is to offer the kind of care and special attention that helps people feel as good as possible, that helps them die with dignity, that comforts and supports them and their families.
She has to know a lot to do it. She must be an expert on cancer pain medications that most doctors may never prescribe in such quantities in their lives -- 300 milligrams or more of morphine, for instance, rather than 10 or 15. She must be able to care for ulcerating skin and to stimulate diminished appetites and to find a way to protect narcotized intestines from the mundane but very real misery of constipation.
"I often find my job incredibly sad," she says, "but it's never depressing. We have a marvelous support system in the home care group. Time is set aside every day for us to meet together. I cry a lot, but I feel comfortable doing it. I love my job, and I can't imagine doing anything else, but there is a price. You meet so many really neat people -- but then you lose them."
One of those people was a good friend of mine who refused further treatment for a breast cancer that recurred despite therapy. Ten years after the initial diagnosis, she made a determined decision that there would be no more radiation, no more chemotherapy. She came to me because she needed someone who would not interfere with her in this process of dying, but who would provide what she wanted -- not to be in intolerable pain, not to be in the hospital, not to be unable to function at all.
Dying comes slowly for a healthy 47-year- old woman, and long before she took her last breath, she suffered spread of the disease to her bones and to her lungs, leaving her short of breath and in need of medication for pain. But when she slugged down what turned out to be her favorite combination -- an opiate and bourbon -- she usually felt fine. It was finally the breathlessness that subdued and conquered her.
I had been afraid to care for this friend when she first came to me. We were so much alike, and I cared a great deal for her. I anticipated that her death would leave me in mortal terror of my own.
She surrounded herself with friends who brought in dinners and provided conversation and entertainment. She enjoyed herself, didn't complain, and told marvelous, funny stories, often about herself, up to her last days. Picking the music for her funeral, she chose the Mariner's Hymn because she'd been a mariner scout as a girl -- the scout, in fact, chosen to deliver a box of cookies to President Roosevelt because of her brilliant sales record.
The last night of her life she was at home in her apartment with her cats and with the nurse-practitioner, who had become more than a friend to her. They talked and she rested intermittently, until after some pain medication she sent her companion downstairs to nap for an hour. By the time she came back upstairs, it was over. She believes our friend sent her away to spare her what she knew was about to happen.
This woman, with some help, handled her own dying with such class and such panache that I came away from the experience profoundly grateful for the opportunity to have shared it. There are ways to leave life, I learned, that are not fraught with misery or fear -- I would be lucky, indeed, if I, when my own time comes, could pull it off half so well.