An indestructible patient

Recently I had the painful privilege of staying close to a friend—I shall call her M—through her final illness. M was 62 and suffering from lymphoma, diagnosed within a year of apparently successful treatment of carcinoma of the colon. Initial chemotherapy gave her a good remission, but when the lymphoma recurred it became clear that further aggressive treatment was inappropriate, and the decision was made to change to palliative care. After she confided this in me, I saw her regularly until her death five months later.

“It seems she was crying out to die and we missed it”

M was a woman with a great zest for living. On the day that palliative care was decided on, she began to plan a party, which she said would be “more important than my funeral.” Two months later this took place, bringing together her family, friends she had made through her professional life and her artistic interests, and neighbours. She had required several transfusions to keep her going. More blood two days before the party gave her the boost she needed, and left us all with a happy memory of her pleasure. It was indeed a great party. Then her relatives dispersed, leaving a sister to care for her. Most of her affairs were in order. She completed her funeral arrangements and began to live in one room in her home, in a limbo of waiting.

“Nothing went right from then on,” she told me much later. (I thought so too, but because I was neither a member of her medical team nor a relative, I felt that I could not intervene unless she asked me to, which did not happen until two days before her death.) She again became weak and breathless from anaemia, and was repeatedly transfused. An abdominal mass enlarged, and she had painful episodes of intestinal obstruction. She grew impatient with the nil by mouth and drip regime. At the end she recounted how she had tried to tell her consultant that death from anaemia would be preferable to the state she was in, and that she saw no point in transfusions now that the benefit was so brief. Her sister reluctantly returned home. Then M had melaena, when alone, and was almost moribund. I thought, “Surely they will let her go now.” However, she was admitted, given five more units of blood, and kept in to await a vacancy in the hospice. Ten days later she was transferred and died within hours. The nurse with her said it seemed as if she felt: “At last I can let go.”

A member of the hospice consultation service had visited weeks before and recorded: “M is tired of transfusions.” Her sister told me that once when M had expected to die and was resuscitated, she remarked with a typical wry sadness: “It seems I am indestructible.” She lived for nine weeks after her party, and the last few were distressing for her and those around her. What went wrong?

With her family's encouragement, I asked to see her consultant, hoping that lessons might be learned from M's suffering. We recognised that there were two main issues: communication and the use of blood transfusions. We identified the reasons for the breakdown in communication. These included her loyalty and gratitude, which inhibited her criticism; failure to monitor her wishes as the illness progressed; and failure to include social factors in making clinical decisions. He remarked sorrowfully (he was fond of M too) that “It seems she was crying out to die and we missed it.”

On the question of blood transfusion, we did not reach agreement. It transpired that although he would have been willing to withhold antibiotics at her request, he thought it could be negligent to let anyone die of anaemia. He mentioned that the ethical issues involved in letting someone die in this way could be stressful and divisive for his team. He explained that failure to treat anaemia could be unpleasant for the patient, causing air hunger and dehydration, and that it carried a risk of cortical blindness. In contrast, a palliative care specialist whom I then consulted thought that a patient like M could be kept comfortable relatively easily without the use of blood, and could die peacefully.

It seems that this case is not unusual. It demonstrates that the use of blood transfusion in palliative care requires further discussion. This may be a particularly difficult area for haematologists, who so often use blood in the course of chemotherapy aimed at remission or cure. I wonder if, for them, it becomes just another medicine, and not something a fellow human being has given to help to save a life. (What would donors think about a case like this?)

We are familiar with the euthanasia debate, about ending the life of a dying patient prematurely. It is my hope, and that of M's family, that publicising her case will draw attention to the fact that prolonging life in the dying, using blood transfusions, can cause needless suffering. Guidelines and safeguards are needed here too.