A Lesson in How to Die and How to Live

In the summer of 2005, my mother was 82 and had been in frail health for a while. Angina, hypertension, and chronic congestive heart failure were under control following an aortic valve replacement six years previously. Upon her return to Boston from a trip to New York for our daughter’s wedding, we noticed that her appetite had diminished and she was losing weight. She was severely anemic and was admitted to the hospital for evaluation and blood transfusions. Clearly something was going on, but her doctors did not know what.

About two years earlier she had told my sister and me that if she were to become seriously ill, she did not want any heroic measures, and she had signed an advance directive. She did not want to be intubated for breathing or for feeding. “No tubes!” She was emphatic. Now she refused any invasive testing to determine the cause of her weight loss and anemia. Her doctors rationalized that, given her medical condition, she probably would not be able to tolerate treatment for what they expected diagnostic testing to reveal, and acceded to her refusal. She agreed to blood transfusions to relieve the symptoms of her anemia, and she went home.

Shortly thereafter she said to me, “I know I am sick . . . and I know that I am not going to get better.” She loved life. She loved her life. She had devoted children, grandchildren, and great-grandchildren, and was much respected in her community. She had been married to a loving husband for 55 years and in the nine years since his death she had been able to take care of her own affairs and live independently. She knew that our time on earth is limited and felt, as her father had, that if God offered her another few years, especially if they came at the cost of arduous and painful medical treatment, she would refuse. She felt blessed, and was grateful, and felt that trying to get a little more time would be unseemly.

As a religious woman, she saw her illness as God’s way of bringing her life to a close. She accepted that and was determined that it happen as painlessly and comfortably as medical science would allow. She would not hurry it by even a minute, but neither would she interfere with its progress. If she became unable to make decisions for herself, she reminded my sister and me, she wanted to be comfortable and pain-free, but nothing was to be done to alter the course of her illness.

When she again became anemic she agreed to more transfusions. Despite a 32-year career in medicine, I did not realize until then how important it was that my sister and I act as advocates for our mother and “run interference” with the medical staff. Nowadays, a person’s primary physician, who knows the patient well, cedes care to a “hospitalist” once she becomes an in-patient. The hospital staff, in their eagerness to make a diagnosis and treat the condition, wanted to do all manner of testing on my mother and had to be reminded that she was there for transfusions to relieve her symptoms–nothing more.

By April she had grown weaker and said, “It’s time to call those people,” referring to the home hospice team. She wanted to make sure medications and staff would be available should she need them. She even spoke about dreams in which a black robed figure would appear and assure her that her children, grandchildren, and great-grandchildren would be fine after she left them. She took to sleeping more and more, although in her waking periods she remained lucid and in control. By the end of April, she had said her good-byes to family and friends and would not see any more visitors. By the last week of her life, she was awake only about five minutes out of every hour, but despite symptoms that would have been relieved by liquid morphine, she refused it, preferring that her waking moments be unobtunded by drugs, and that nature be allowed to take its course. When I offered her a glass of water, she looked at me, her eyes sharp as ever, and said, “You didn’t put anything in it, did you?” Her waking periods grew shorter and less frequent until they ceased altogether and she passed gently out of this life.

She had experienced the death of her parents and of my father, all of whom died at home surrounded by loved ones, and she was determined not to die a “medicalized” death. She was fortunate to have maintained her mental faculties until the very end.  More importantly, she had given serious thought to the eventuality and articulated her wishes clearly to her children. Knowing her wishes, and the values underlying them, made otherwise difficult decisions easier.  We were prepared to honor her wishes, and in so doing, honor her life and her conviction that a longer life is not necessarily better, it is only longer. Her legacy is her acceptance of the inevitable with the same courage and dignity with which she lived her life.

Rabbi Leonard A Sharzer, M.D.,69, is Associate Director for  Bioethics of the Finkelstein Institute for Religious and Social Studies at The Jewish Theological Seminary.