Mother was dying slowly. She could no longer communicate. Her health care proxy (this was in New York) wanted to follow Mother’s wishes and keep her comfortable – palliative care – and to withhold artificial food or hydration when matters got to that stage. The relatives who lived nearby all agreed. At 11 pm, the son from California, who had not seen her for 20 years, arrived on the ward unannounced and proclaimed that “everything must be done” to keep her alive. By “everything” he meant artificial everything – tubes for food, tubes for hydration, artificial breathing on a machine, a cardiac monitor and any resuscitation that might be indicated: a full-court press in the ICU.
Only 10% of us die quickly. An accident, murder, a massive heart attack or a stroke carries us off suddenly or we die quietly in our sleep one night. The other 90% of us have a long, protracted downhill course over many months, and with diseases like Alzheimer’s, over a few years.
In the early stages of a potentially fatal disease, say, cancer, there are curative treatments. Cancer might need surgery, maybe followed by radiation or chemotherapy. If the cancer recurs, a different form of chemotherapy may be worth a try, but the likelihood of cure becomes less and the probability of unpleasant side effects greater. By a third round, the patient or the doctor may hope “cure” but the reality is that the new cocktail will at best prolong life a few weeks, maybe a few months. It is almost certain the patient will have side effects that are hard to tolerate. Many patients who had been through three rounds have told me the side effects were worse than the disease.
If the patient, the family, or the doctor are adamant that “everything should be done” matters progress sooner or later to an ICU. Life support means mechanical respirators, intravenous tubes, nasogastric tubes or direct stomach tubes, dialysis, heart monitors. The ICU has constant noise, constant bright lights, rare privacy. It is expensive setting. The attitude “everything must be done” is responsible for the adage that we Americans spend more on a medical care in the last few months of a person’s life than in all the rest of their life combined.
The alternative to “everything” is called palliative care. It provides more care, more effective care, and more preventive care than “everything.” Palliative care is often given in a Hospice, the hospital, in a special house, often at the patient’s own home.
There is lots of treatment. It is directed at relieving the many symptoms every terminal illness produces as one organ system or another begins to slow down and shut down. Other treatment helps patient and family cope with problems getting around or using hands and arms, and with social needs and problems, and with legal issues, and with psychological issues and needs, and with the spiritual issues that invariably arise at the end of life.
Does the patient feel abandoned by God? Are there life goals that need to be completed? Does forgiveness need to be requested or accepted?
An entire team of doctors, nurses, social workers, therapists, counselors, and spiritual experts work in unison to help patient and family. Other experts, like lawyers, may get involved from time to time.
This has led to a paradox. In many parts of the country, ¼ to 1/3 of the patients who are admitted early to hospice end up surviving with a good quality of life for two or three years longer than expected. It is due to the quality and breadth of care, which are greater than care provided outside Hospice. The Hospice team pays a lot of attention to preventing problems and to catch and reverse them quickly. Many people who work in Hospice think the relief from spiritual worries and social concerns plays an important role.
There are notable legal cases in which world-renowned Hospices were sued by the Federal Government for fraud because so many of their patients lived so long after admission. Luckily, this foolishness seems to have ceased.
What about the conflict between the son from California and the rest of Mother’s family? It’s a fairly common issue. (When Mother lives in California, the outsider is the “daughter from New York”.)
The key is the 20-year absence. There has been estrangement, deliberate or not, maybe in reaction to some disagreement or slight, maybe not. The son has a mixed emotions and needs. He feels guilty. He is longing for love from Mother, and to be able to talk with her either to give forgiveness or more often to seek forgiveness. He was not around and did not participate in the discussions the medical team had with Mother and the family, so he does not understand the futility of “everything” care, and that it actually makes matters worse, increases the patient’s suffering, shortens life, and costs family and society emotional and spiritual anguish and at least as much money as all the other medical costs throughout Mother’s life: all for a futile gesture. Futile, but well meant.
In our hospitals, three of us from the ethics committee would meet the son in a conference room on the ward. My colleagues were a nurse or social worker and someone from the community, usually a businessman with a strong interest in business ethics and medical ethics. I was the physician. We were joined by a senior nurse from the ward, the ward’s social worker, and sometimes the nurse who had cared for Mother the most in recent days.
The explanation was given kindly, gently, with compassion; never arguing. Each of us took part spontaneously. The gist of it was, “we understand. This has happened before. It doesn’t upset us. Your wishes are an expression of your love for Mother and your wanting to do the most for her, her comfort, and her happiness. Perhaps you are hoping against hope that she will wake up, by some miracle, and you’ll be able to talk with her. You’d like to make up, apologize, forgive or be forgiven. Actually, even though she is in a coma, we know she can feel and hear. If you stroke her forehead, hold her hand, talk quietly to her, some part of her will know, will understand, will appreciate what you are doing.”
Only when the son grasped this would we go on to explain that the kind of “everything care” he sought would make things worse; and we would talk about this only if he needed more reassurance that everything reasonable and helpful was indeed being done.