So far, we have been talking in generalities. Let us bring things a little closer to home. How do you want to die? The question is not whether you wish to die, but given that you have no choice in the matter, what would be your preference? In working with physicians-in-training I often start with this question. I ask them to consider the most wonderful death they can imagine for themselves and then describe it, like a scene in a play. Many are taken aback and have trouble answering. Some answer immediately, as if they have been just waiting for someone to ask. I have heard a wide variety of responses. Nevertheless, I am struck by some persistent themes. They suggest common hopes and fears about dying.
Often the first respondent imagines dying suddenly, usually while asleep. An interesting variation on this theme was a newly married woman who hoped to die instantly and unknowingly with her husband in a plane explosion on the way back from a wonderful vacation to Hawaii. These sudden-death fantasies highlight a fear shared by many of us that dying will be painful and difficult. The best one can hope for is simply to disappear. As Woody Allen put it, "It's not that I'm afraid to die ... I just don't want to be there when it happens." When such a sudden-death fantasy first appears, there is usually embarrassed laughter in sympathy by others in the group. Often someone mentions that what might be seen as "winning the game" by the dying individual would be viewed as the greatest of tragedies by family and friends. (The newlywed in her fantasy tried to trump this concern by dying simultaneously with her husband). Couples in a common spousal game may even discuss who "wins" based on who dies first. Often the first to die is seen as the winner, as the bereaved is left to mourn.
The second-most-common fantasy death takes place at home. Typically, participants describe a peaceful scene. In advanced but previously healthy old age, the dying person lies on the deathbed surrounded by family and friends. The home may be a literal home, a summer get-away cottage, or a fantasy home. In this fantasy people usually say they know they are dying. I will often ask, "How much time do you want to know you are dying?" Responses vary, but two weeks is common. The challenge in this question is that respondents are struggling between a sense that there is something to accomplish in dying (at least goodbyes to be said) and the fact that dying is still a scary business. Even in fantasy deaths, in which everybody is always physically comfortable, simply knowing you are to die soon is stressful. In fact, patients who get only two weeks notice usually perceive and are perceived as having virtually no time to come to grips with dying.
The third-most-common fantasy is dying while engaged in a valued or meaningful activity, often in a beautiful natural setting. A golfer wanted to die after a hole-in-one on the 18th hole. A mountain climber actually wanted to die with a rope breaking. A revolutionary wanted to die in a revolutionary struggle. Often, people describe pastoral scenes, dying on a mountaintop or drifting out to sea during a spectacular sunset.One fantasy that combined a personal interest with nature and family had the dying person enjoying a party with loved ones on a glacier on a clear, cold night. The person then skis down the glacier off a cliff and flies out over the ocean, where he conveniently disappears.
It is remarkable how difficult it is for people really to see themselves in their death scenes. What is described is the scene, not the dying person. The dying person often seems to have been cut out from the scene. I suspect this reflects an understandable resistance to imagining oneself as old or actually dying.
Other than the sudden death fantasy, all fantasies I have heard seem to reflect, first and foremost, a sense of being at home. This home is often literal but may be figurative. A self-defined revolutionary is most at home in a revolution. This home seems to be even more important than comfort per se. No fantasy I have heard has included any discomfort. Even the revolutionary wanted to die "with a good clean head-shot." When even very young doctors describe this home, they often get goofy half-smiles on their faces and become surprisingly peaceful.
I have come to believe that finding one's home at the end of life is the central aspiration of dying people, understandable even to young physicians who are hopefully far from death. Helping people connect with their homes is our principle goal. Enhancing comfort is not the goal of hospice or palliative care but a means by which we remove obstacles to such connection. It is a very rare person who can be at home while in immense pain or while vomiting. While enhancing comfort and relieving suffering is a central task in providing hospice care, this is not adequate in and of itself. Helping people connect to their homes is truly the art of hospice and must draw upon the efforts of many who support the dying person.
For those who work with the dying, a critically related question is "How can we be at home in the face of the great suffering we are called to witness?" Dying people are remarkably sensitive to the emotional states of people around them. Our anxieties and fears are highly contagious. Mercifully, so, too, is peace and love. Such a question may seem overwhelming to a young doctor but can be easily understood if one imagines what one would like to see in one's own doctor in a crisis. Imagine having been in a car accident and then being wheeled into an emergency room. You need a chest tube (a very unpleasant procedure in which a large plastic tube is inserted between your ribs). A doctor approaches you. What do you want to see? You do not want to see that physician reading the instruction manual on how to insert chest tubes. Lack of experience and competence is not reassuring in the ER or in palliative care. Do you want to see someone who empathizes so much with your situation that he or she vomits or faints? I doubt it. Do you want a hardened, anesthetized physician who simply says, "Little stick" before jamming a tube into your chest? Certainly not. You want a physician who is competent and who can relate to your pain yet seems to radiate confidence and tranquility. It is no different in palliative care. However, really learning how to do this is so difficult that it is a lifetime practice. Personally, I am far, far from mastery.
Finally, it is remarkable what is not included in the fantasies. No fantasy has included a hospital, a physician, or a nurse. This should be humbling for those of us who work with the dying. We are not part of their fantasy - we are there because, sadly, most deaths are not ideal. People need help, and we are fortunate enough to be in a position to provide it.
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Palliative Care Perspectives
James L. Hallenbeck, M.D.
Copyright © 2003 by Oxford University Press, Inc.
The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.