From the NYT: Helping Patients Face Death, She Fought to Live

Healthy people who think of death and dying often express a wish that if and when they will have to face their own looming death, that they would not want to be put through excessive, even hopeless medical intervention in order to “irrationally cling to life” while in intensive care. No, they say, when death comes, they would rather have it be a clean affair, to get over with quickly and painlessly. If and when they will be terminally ill, the would not want to go through “excessive” chemotherapy, nor remain endlessly on life support; they would want to die with dignity, rather than irrationally cling to life.

These reflections often result from suddenly coming face to face with human frailty and looming death, either because they visit a possible terminally ill patient, or because they have very recently discovered that they are affected by a grave illness.

Upon seeing a much weakened patient out of whose body several tubes and wire emerge, connected to advanced medical machinery, their fear of dying becomes so great, that they would rather be spared the effort to remain alive.

Many doctors would encourage such a person in “bravely” facing death. In fact, such is the role of palliative care doctors, to encourage patients facing their own looming death to let go.

And yet, when push came to shove, a palliative care doctor chose to pursue every hope for life (from the New York Times):

She preached the gentle gospel of her profession, persuading patients to confront their illnesses and get their affairs in order and, above all, ensuring that their last weeks were not spent in unbearable pain. She was convinced that her own experience as a cancer survivor — the disease was first diagnosed when she was 31 — made her perfect for the job.

In 2008, while on vacation in Boston, she went to an emergency room with a fever. The next day, as the doctors began to understand the extent of her underlying cancer, “they asked me if I wanted palliative care to come and see me.”

She angrily refused. She had been telling other people to let go. But faced with that thought herself, at the age of 40, she wanted to fight on.

While she and her colleagues had been trained to talk about accepting death, and making it as comfortable as possible, she wanted to try treatments even if they were painful and offered only a 2 percent chance of survival.

Dr. Pardi had gone into the field because she thought her experience as a patient would make her a better doctor. Now she came face to face with all the ambiguities of death, and of her profession.

She remembered patients who complained to her that she did not know them well enough to recognize that they were stronger than she had thought. Now she discovered that she felt the same way about her own doctors. “I think they underestimated me,” she said in an interview last summer.

This is confirmed by health care chaplains’ experience. The same patients who, when still healthy, do not wish that they be treated too aggressively, who consider clinging to life undignified, once they are in such a situation, they gain a different perspective and want to live. They discover that clinging to life is much more dignified than projecting your own, limited, health-biased sense of dignity onto another person, onto a patient weakened by illness, but no less entitled to life and its lively colours, smells and sounds.

However, often, by the time a patient changes his or her mind, it is too late to express the new wishes, because one is weak, and easily pressured, or worse, ignored.

Conscious of this reality, we should all feel encouraged to think about these matters, and appoint, in a legally empowering manner, a person whom we entrust with our wishes, with whom we regularly discuss our wishes, while also keeping our eyes open to the desirability of choosing life. Accountants have no say in this basic moral question.

To this end, the Rabbinical Council of America designed a set of documents, including a legally efficacious “health care proxy.” I was fortunate to have been the interim chair of a committee of very capable, knowledgeable and experienced people, from whom I learned a lot, which, last year, revised and updated the RCA’s health care proxy. Learn more about it by checking out the RCA’s Health Care Proxy and the accompanying brochure. Please note that with minor adaptations, the RCA’s health care proxy is also valid in European jurisdictions.

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