Sunday, August 22, 2010

Hospice, Death and the Orthodox Community

Death is no stranger to the Orthodox rabbi. In fact, death plays a major part in the rabbi's life. From frequent hospital visits, to the sometimes inevitable funeral, to the shiva and aveilut questions, a rabbi finds himself constantly surrounded by death.
Most aspects of death never really bothered me. I cannot say that I enjoyed them, but I appreciated the fact that at certain times I represented a source of solace and comfort that could come from no one else. People needed answers that only I could give them. They looked for a connection to the Eternal that I helped bring them closer to. They sought strength and guidance from a figure of authority that I could provide them. I found some of those experiences with families suffering in their darkest times to be the most meaningful of my rabbinic career.
And yet, at other times I felt impotent. I could only help so much. I could not alleviate the physical pain and emotional terror of the final throes of illness. And, on some occasions, I found myself pushed out of the picture to the detriment of my congregant.
In the Orthodox community, we consider human life a gift from God to be cherished and savored. Every moment is precious and holy; every instant sacred. For this reason, rabbis will often instruct doctors to take heroic measures in the interest of prolonging human life, even if the patient is comatose; even in the case of great suffering.
I take a more nuanced view. To my understanding, Rav Moshe Feinstein ruled that a person is not required to endure pain and suffering to prolong her life. She could choose to forgo a treatment that might give her more time, but cause her considerable suffering. Yet, many rabbis take a different view, requiring that patients endure almost any amount of suffering to prolong their lives.
I once found myself in the hospital dealing with a dying member - we'll call her Sarah. Sarah had been suffering from prolonged congestive heart failure; multiple infections - normal end-of-life issues. She also had made her wishes perfectly clear: she was tired. She had had enough. She didn't want any more invasive treatments. (And if you've ever spent any time in the ICU you know just how invasive the treatment is.)
Yet, while Sarah and her husband belonged to my shul and attended regularly, their children had taken a more right-wing direction, and submitted their questions to a different authority, who instructed that they continue to treat her. They decided to insert a pacemaker in her chest to regulate her heartbeat, knowing full well the danger of the procedure to a woman as sick as she was. In fact, twice during the procedure her heart stopped, and twice they shocked her back to life. She died later in the week.
Speaking to doctors (even frum ones), they often describe the treatment that Sarah had not as medicine, but as medically sanctioned torture. I used to think that doctors were predisposed against terminal patients; that if they couldn't cure them, then they wouldn't want to treat them; just make her comfortable - prolonging life was not important. That still might be true for many doctors. But there's another side as well; a side that needs to start asking whether because we can do something we in fact should; whether it's our place to force a person, either through halachic coercion or guilt to impose tremendous yissurim upon themselves during the final episode of their lives.
I think of Sarah often, and the memory of her final days fills me with a great deal of anger. I wish I could have done more for her. But the family didn't ask me. Her children were not my members, and her husband deferred to them. After her death I spoke on several occasions about the importance of an advanced directive, specifically emphasizing the importance of choosing the rabbi that you want to address your issues. I practically begged people to sign the document. Some listened, but others did not.
I thought of Sarah again this Shabbat as I read a powerful article in the New Yorker about hospice care by Dr. Atul Gawande. It's a very important piece, and I recommend that you take the time to read through it. I agreed with many of the questions the article raised, but especially the following paragraph.
Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer. When Cox was transferred to hospice care, her doctors thought that she wouldn’t live much longer than a few weeks. With the supportive hospice therapy she received, she had already lived for a year.
Are we going about it all wrong? We assume that because we cherish life, we must treat more. We must accept every procedure. We must continue to feed and hydrate to prolong life. But maybe we're going about it all wrong. Perhaps for certain illnesses, the way to prolong life is to emphasize comfort and life at home; to accept hospice and pain management and removal of hydration, giving the patient a semblance of life, and the ability to confront her final days in consciousness, surrounded by family, friends, and with the guidance of the rabbi.
For Sarah, it's too late. But what about the next Sarah, and the one after that? Why must they suffer?