The old woman sat quietly in the corner of a darkened room watching her son, who lay dying on the bed. He had colon cancer. She had breast cancer. His turn came first. I could not imagine what it was like for her, a dying mother with a dying son. I wondered if she saw a reflection of her own impending death before her. She was peaceful but curious. Perhaps, living herself in death's shadow, this dying did not seem so alien and her son not so far away. I sat next to her, and we watched together silently. Roger lay deep upon his mattress, but there seemed to be a lightness about his spirit that was new since the day before. His breathing slowed a bit and then sped up. There was a soft, purring sound, somewhat like a cat but not quite the same. When he breathed, his mouth opened slightly. His face was relaxed with eyes half opened. He looked ... not asleep, not in a coma, not quite here anymore yet not yet gone either. "I guess he's getting close," she said. I nodded. "Doesn't look so bad, does it?" "No," I said, "it doesn't look so bad."
One thing is certain: each of us will have a last 48 hours. For some a final stage of dying will be recognized, while for others death may come as a complete surprise. For those who do "take a turn," as hospice staff say, a pathway is entered that has many common features.
This phase of dying, variably called the "terminal phase" or "active dying," is characterized by a series of changes that affect the dying person, the family, and clinicians.1 For many dying patients this phase seems almost anticlimactic. They enter a dreamlike state and seem to progress peacefully in their dying. Some do have a hard time, and we need to know how to help them. Families often struggle mightily during this period. Clinicians are also seriously challenged. Few have been taught about active dying. Most lack even basic competencies. Clinicians are humbled before death as it becomes so obvious at a certain point that we are not in charge at all.
Lay people would be amazed if they knew how little clinicians know about active dying. They mistakenly think, "You see lots of patients die, you must know what this is about." However, in my experience the greatest lack of clinical knowledge in palliative care exists in this area. Dissecting cadavers in anatomy may teach clinicians about dead bodies, but it teaches nothing about dying. In a study by Merlynn Bergen and myself that examined the experiences of internal medicine residents who rotated onto our hospice ward, interns reported feeling the least knowledgeable about the physical changes of dying.2 I suspect their experience was something like mine as a resident. I was too busy looking at numbers - lab values, vital signs, O2 saturation monitors, and so on - to pay much attention to how people died. I am not sure that I ever simply sat with a dying patient. My patients either "coded" or were found dead with a DNR status. I do not remember many patients who died. Even now, although I have cared for many dying patients, it is a rare privilege to be able to sit with patients when they actually die. At one level there is a mystery to dying that defies explanation or rational understanding. The closer I am to death, the more aware I am of how little I understand about it. I suppose I should be patient - I will find out eventually. Given these limitations, what we can say about active dying can only be told from the very biased perspective of one who is not actively dying. However, we must start somewhere.
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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.