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November 14, 2003/Cheshvan 19 5764, Vol. 56, No. 8
Making difficult choices
How Judaism responds as life ends
VICKI CABOT
Contributing Editor
Dr. Gillian Hamilton, shown here with a patient, is an outspoken advocate of expressing advance medical directives and assigning medical power of attorney.
Photo courtesy of Jeff Noble/Hospice of the Valley
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Beginning life, enhancing life, prolonging life: the wonders of modern medical science astound. But as they dazzle us with the prospect of long and healthy years, so too, do they confound us with daunting medical choices rife with innate ethical and moral implications. And nowhere do those choices seem so profound as when making end-of-life decisions.
"You can't resolve death issues once a person has died," says Dale Singer simply. Singer is a pediatric oncologist on staff at Phoenix Children's Hospital.
It is the very finality of the choices -- are we using medical technology to prolong life or simply delay death? -- that makes them so wrenching.
Good medical information, sound legal advice and comforting spiritual guidance can help. And an understanding of the underpinnings of Jewish law can lead us to the appropriate decisions for ourselves and our families - with the added dividend of providing needed solace during often difficult times.
"People are looking for spiritual guidance on these issues," says Rabbi Richard Address, director of Union of Reform Judaism Committee on Jewish Family Concerns, who has helped to spearhead the Reform response to end of life issues. He is the author of, "A Time to Prepare," a manual for helping families ready for the death of a loved one, and leads workshops on the subject across the country.
"I've found that when people understand that the decision they are making has a foundation from classic Jewish texts, there is a liberation that takes place," he says from URJ offices in New York.
Rabbis from across the denominational spectrum would agree - but which texts and how they are interpreted would be open to discussion.
Speaking from New York, Rabbi Dovid Bleich, who teaches at both the Yeshiva University's Rabbi Isaac Elchanan Theological Seminary and Cardozo School of Law, offers a clear-cut standard.
"We have an obligation to safeguard life for the natural lifetime of the person," says Bleich, an Orthodox rabbi and noted scholar on Jewish medical ethics. He advocates any interventions that would extend life unless they would pose undue hazard to the patient. He emphasizes the sanctity of life and its divine providence.
"This is not our life," he adds.
The understanding that our lives are sacred and not our own is intrinsically Jewish and universally accepted in Jewish thought. But Conservative and Reform rabbis qualify that affirmation.
"Our lives are a gift," says Joel Gereboff, a Conservative Jew who chairs the religious studies department at Arizona State University and has taught widely on Jewish medical ethics. "They are not fully our own," he says.
Yet Gereboff suggests that how we define life may influence end of life decision making. "Life is not just mere biological function," he says, implying that there are other factors to consider when making decisions about treatment that would extend life.
Says Address, from the Reform Movement, "It is not my life, not my body, to do with as I want." Yet Address goes on to define the preservation of life as "the preservation of the dignity and sanctity of life."
"The value of life is not an absolute in Judaism," he holds.
Rabbi Elliott Dorff, rector and professor of philosophy at the University of Judaism and chairman of Conservative Judaism's Committee on Laws and Standards, lays out four additional underlying principles beyond our fiduciary responsibility to God. "We are mortal," he says by phone from his Los Angeles office. Also, he says, Jews believe that medicine is a good thing but that medical care must "work for the benefit of the patient." Just because we have access to certain drugs or technology does not necessarily mean it is in the patient's best interest to use them. "It's not a slam dunk," he says about making such decisions.
And lastly, says Dorff, we must remember that we have limited human potential. "We are not God."
Applying those approaches to medical modalities reflects their difference. Bleich holds that life-extending interventions are required, regardless of the physical or mental capacity of the patient. That would include respirators or ventilators to facilitate breathing, intravenous or feeding tubes for artificial nutrition, kidney dialysis machines for kidney function and use of other drugs or techniques to maintain life.
"All technology available should be used (if there is no hazard)," he says. "Every patient wants to live as long as he (or she) can."
Bleich likens a ventilator to a "delivery system for oxygen" and a feeding tube to a "delivery system for food." Assuming there is no physical risk in utilizing either one, Bleich believes they should be introduced - and that they should not be withdrawn. He is dismayed at the Terri Schiavo case in Florida where the young woman's husband was recently granted permission by the courts to have a feeding tube removed. Schiavo has been in a persistent vegetative state for 13 years. The tube has now been reinserted following action by the Florida State Legislature.
"Unequivocally, they should not have removed the feeding tube," says Bleich.
Dorff says that according to his interpretation of Jewish law, the tube could have been removed years ago. He explains that generally after three months doctors can predict whether or not a comatose person will be revived. "That's the reasonable standard," he says.
"Keeping patients on machines for years is not to the benefit of the patient or anyone else ... Jewish tradition says we are God's partner," he adds, "so we have the right to intervene. But intervene to what end?"
Physicians can play a meaningful role in helping patients and their families assess those means and ends and make informed decisions.
"Doctors have an obligation to discuss options with patients and make a recommendation," says Singer, who teaches an end-of-life course to medical residents.
At PCH, the conversation engages doctors, nurses, social workers, family members and patients. Often a rabbi, priest or minister is part of the team. While Singer notes that making a recommendation is more common in pediatrics, most families would welcome a professional opinion for older patients as well.
She and her husband, Alan, also a doctor, recently each lost a parent as well as an elderly aunt. "We very much needed physicians to make recommendations," says Singer. In one case, when the doctor demurred, the family consulted with a hospice nurse.
But what is most valuable is to think ahead and provide clear direction.
"We used the opportunity - three funerals in one year - to talk to our (adult) kids," says Singer.
"We told them this is what each of us wants and what our wishes are."
Such conversations - which Singer counsels should be ongoing as medical options and life perspectives change - can spare family members undue anguish when a parent or other relative becomes critically ill.
Formal written medical care directives - living wills and medical power of attorney - can elucidate issues for family members if a patient is no longer able to communicate his or her wishes. Wendy Laskin, a local attorney who specializes in elder law, counsels her clients to express their wishes in a living will and assign medical power of attorney to a trusted relative or friend. If responsibility for making medical decisions has not been assigned, Arizona law delineates a descending order for assuming responsibility, beginning with a spouse and ending with a physician.
"Talk about it ahead of time and make the best decisions," she says.
Hospice of the Valley administrative medical director Gillian Hamilton has spearheaded a program to raise consciousness about the need for end of life planning. She is co-director, along with Barbara Volk-Craft, a hospice nurse, of Health Care Decisions, a nonprofit institute devoted to educating the community about advance directives. The project is funded by BHHS Legacy Foundation, St. Luke's Health Initiatives, local health care institutions and private donors.
Hamilton emphasizes the need to talk.
"Nobody likes to think about end of life when there is something more to do to fix it," she says. But we must find ways to initiate the conversation.
HCD uses words, music, song and real life stories to inspire the dialogue. Twenty-five trained volunteers are leading interactive discussions at a variety of venues throughout the Valley.
Hamilton notes that less than 25 percent of Americans have made their wishes known about end-of-life issues. She has seen the effects of not taking action.
"Every week we see families torn apart because they do not know what their husband or wife had wanted. So often they say, 'if only we had talked.' "
Rabbi Martin Scharf, chaplain at Kivel Campus of Care, notes that the elderly residents often want to talk. It is the children and grandchildren who are uncomfortable and hesitant about bringing up the subject.
"When our loved ones get to be old and fragile, we want to protect them as if they are young children," says Scharf. "We don't want to talk about death - but they do. It is real to them."
Living wills express wishes about end of life care; medical care power of attorney assigns responsibility to someone to act for the patient if he or she cannot act independently.
"Choose someone who loves you enough to do the right thing," says Volk-Craft.
Doing the right thing, even when directed by a loved one, often is not easy.
That's where spiritual support can be most helpful, say the rabbis.
"People are overwhelmed. They do not understand what their obligations are. It is helpful to have a rabbi involved," says Bleich.
Address says that our congregations provide a built-in support network. "It's what we are all about - religion and community," he says. "It's all about relationships."
Notes Gereboff, "The biggest challenge of death is being alone - the one who is dying and also the family.
"There is a value in relationships, in having someone to help you think things through."
Gereboff laments that more American Jews do not have the benefit of such communal support, electing instead to eschew formalized religion as a source of spiritual guidance.
"People get their spiritual help at Barnes and Noble or watching 'Oprah', " he says.
"You can learn from books, but you can get more from relationships."
Especially when dealing with life and death issues.
Address reiterates the obligation of congregations to address end-of-life issues, providing not only information but also venues for open discussion.
Making the right decision is difficult, no matter the circumstances, notes Singer.
And death is painful no matter how well prepared you think you are.
"The right decision is the one that you can live best with for the rest of your life," she says. "And (the patients) will tell us. We just have to listen."
Contact the writer at vicki_cabot@jewishaz.com.
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