By Manny Frishberg, JTNews Correspondent
As the baby-boom generation has aged, we’ve discovered death whether by facing up to our own mortality as a middle-aged rite-of-passage or needing to confront our own parents’ end-of-life decisions.
For Alberta Golden, helping people learn about what choices they have when they near the end of their lives and how to give their wishes weight has become a major concern. So much so, that she has not been making it to the meetings of Retired Women’s Club at the JCC (which she co-founded). Instead, for the past year she has been attending the board meetings of Compassion In Dying, Washington.
Compassion In Dying, which was founded in Washington in 1983, also offers a telephone advice line and case management services for people with terminal diagnoses through a network of 15 volunteers and ties with hospices in the Puget Sound area. “I believe that people should have some say in their end-of-life decisions,” she said. Making sure that people can get the right pain medicines so their last days are not spent in agony is one of her main concerns. “[I want] someone who knows that if I am in a terminal situation [diagnosed by two physicians as six months or less to live] that I should definitely have a voice in the management of my pain, and to deal with a doctor who agrees with that.
“The other aspect that has interested me is the legal aspect,” Golden said. “What papers do you sign? One of the functions of Compassion In Dying is to help people with the proper paperwork to be done for end-of-life decisions. There are workshops presented by the organization to help explain what kinds of documents to fill out to give to your doctor and your hospital.” She hopes to learn enough to offer mini-workshops on the subject with a friend, but does not feel she is well enough informed yet to do that. This isn’t just something to think about in old age, Golden notes. Her 44-year-old daughter was spurred to get her papers in order before going in for a recent surgery.
“It’s very much an educational function that the case managers and the organization provides,” explained Robb Miller, executive director of Compassion In Dying, Washington. “A lot of work that we do is over the phone. People call the office with questions about advanced directives. They might be in a situation where they are having trouble having an advanced directive being honored. We get a lot of phone calls from people, a lot of requests for information. Actually a minority of our clients actually opt for case management services.”
At the same time, Compassion In Dying is controversial for its insistance that the dying person’s choices should extend all the way up to hastening his own death when he feel he cannot take it any longer. Golden said this involves the question of terminal sedation, where a doctor and patient may agree to provide enough medication to ease the pain, letting the person “drift off at some point” under its effects.
“That pretty much is what compassion promotes,” said Golden. “We also promote the right to go beyond that. We don’t promote going beyond that, but we promote the right of people to have the choice.”
From a Jewish perspective, that falls into a gray area in the law. “First of all there are multiple Jewish perspectives,” explained Rabbi Anson Laytner of Seattle’s Multifaith Works. “Traditionally, Jews are not supposed to do anything to hasten death, but at the same time, we’re not supposed to do anything to prolong a person’s dying. That’s where the dilemma comes in, because I think a lot of modern medicine can have the unintended effect of the latter. I see Compassion In Dying as, for some people, a necessary corrective to modern medicine’s unintended effect,” he said.
“If the intent was more to follow the patient’s wishes for relief of pain, and it had the unintended consequence of causing them to die, that would be more permissible [even if that were a probable foreseeable consequence]. From my own personal perspective,” Laytner added, “if there is hope, then as a Jew, I want to pursue that. But if the person has no possibility of recovery, then I see it very differently; then it’s just prolonging the dying.”
The Orthodox Bikur Cholim-Machzikay Hadath Congregation’s Rabbi Moshe Kletenik said the law is clear. “We don’t have proprietary ownership over our bodies. Life is given by God and we are stewards of our bodies over the period when we are on this earth. We are not allowed to decide to end our lives.
“Of course,” he added, “we have to try to make every effort to try to deal with pain. In many instances, people who are suffering at the end of life is due to the fact that there hasn’t been adequate pain management.”
Kletenik, who for nine years was a member of the bioethics and critical care committee of St. Francis Medical Center in Pittsburgh, Penn., notes that the last several years have seen great strides in recognizing the need to control pain at the end of life. He said in the past doctors shied away from providing adequate doses of morphine and other narcotics out of a misplaced fear their terminally ill patients could become addicted.
“We’re not just about hastened death — in fact that’s a very small percentage of our clients,” Miller said. “Hastening death in some ways…may go against this primordial human physiological desire to live, even in the face of great human suffering. [Some terminal patients] have received the prescription for the medication. It seems to offer people some sense of control and more often than not, once people have the means, they seem to have the peace of mind that allows them to go ahead and have a natural death, even in the face of more suffering.”
“I don’t feel that there is anything about Compassion that is incompatible with my being a Jewish woman,” Golden said. “When some of my non-Jewish friends have asked me about what it means to be a Jew, I always said, “˜To do justice and love mercy.’ I find that entirely compatible with my work with Compassion In Dying.”