Even with the recent hue and cry during the health care debate over so-called “death panels,” Jewish experts on end-of-life issues say they have a tough time drawing attention to the real questions about medical interventions, care and spending in the final years and months of life.
“The majority of our people do not know what Judaism has to say and how it can guide people in making sacred decisions,” said the Union for Reform Judaism’s family concerns specialist, Richard Address, who urges congregations to build end-of-life discussions into their adult education programs. “I’m not going to lie to you, this is a tough sell. If someone invited you to a two-hour discussion on decision making and death — well, you’d probably rather go shopping.”
On the public policy level, anyone who brings up end-of-life issues has to worry more about his own political demise. A provision in one of the early health care reform bill drafts would have reimbursed doctors for the time they spend talking to patients, at the patients’ request, about end-of-life medical care. Some conservative opponents of the proposed heath care reform, most notably former vice presidential candidate Sarah Palin, described the voluntary consultations as “death panels,” raising the specter of government bureaucrats deciding whether sick old people should live or die.
Despite the lack of truth to the death panel claims, health care reform supporters “just couldn’t waste political energy on the argument anymore,” said Rachel Goldberg, B’nai B’rith International’s director of senior advocacy. The provision was ultimately dropped.
Since then, end-of-life care has become the unmentioned elephant in the room of the health-care reform debate. Even though a third of Medicare spending, about $67 billion a year, pays for treatment of chronically ill patients in the last two years of life, none of the current bills explicitly mention end-of-life health care spending.
Still, discussions are taking place behind the scenes about how to improve the way Americans get health care in the years and months leading up to death, Goldberg said.
“It hasn’t been front and center in the debate, but there are pieces that will affect that,” such as reimbursement rates for hospice and home care, she said. Right now, she said, Medicare and Medicaid suffer from an “institutional bias” that often makes it easier to get reimbursed for nursing home and hospital care than for hospice and home care, even though the latter are usually cheaper for taxpayers and more desirable from the patients’ point of view.
“Often, the least expensive settings are actually what people want,” Goldberg said. “People tend to want home care in a lot more situations than they get it. We want to change that so more late-life medical services can actually be more cost-effective.”
While the health-care reform bills attract loud debate and close scrutiny, a case that’s quietly making its way through the New Jersey court system may end up having just as much impact on end-of-life medical decisions, and Jewish groups are weighing in on it.
The case concerns the fate of Ruben Betancourt, a 73-year-old man who was admitted to Trinitas Hospital in Elizabeth, N.J., last year with kidney failure. He had been in and out of several treatment centers and a nursing home after suffering complications from cancer surgery, and he was dependent on a ventilator, dialysis and a feeding tube.
Trinitas Hospital wanted to take Betancourt off the ventilator, and his family wanted to keep him alive. A New Jersey superior court judge ruled that Betancourt’s daughter, Jacqueline, had the right to make decisions for her father and that the hospital shouldn’t be allowed to overrule her. The hospital appealed; in the meantime, Betancourt has died (while on the ventilator), but the appeal may still go forward because the issues raised could potentially set a precedent for other end-of-life cases.
The case is drawing national attention because it’s being framed as a conflict between patients’ rights to determine their own care versus doctors’ rights to refuse treatment that they believe is inappropriate or even inhumane. In Betancourt’s case, the hospital contended that Betancourt was “actively dying,” suffering from bed sores and infections. But his family members reported that he responded to their voices, and said that he had always been a fighter and would want to keep living for as long as he could. The question for the court was, essentially, who should decide when to pull the plug, the family or the doctors? New Jersey courts so far have sided with the family, but because the case has potential to set precedent on appeal, legal experts are following it closely.
“If the case is fully briefed and decided on appeal, it may prove to be the most significant judicial precedent on medical futility,” wrote Thaddeus Mason Pope, a professor at Widener University School of Law in Wilmington, Del., who specializes in health law and has blogged about the Betancourt case. “That is because the hospital is squarely framing the relevant issue as ‘whether a hospital… can be compelled to provide inappropriate treatment… contrary to recommended standards of care.’”
Two Orthodox groups, Agudath Israel and the Rabbinical Council of America, recently filed friend-of-the-court briefs to support the family’s position.
“It really comes down to patient autonomy versus medical authority, and who makes these decisions,” Agudath spokesman Rabbi Avi Shafran explained. His organization distributes and encourages its ultra-Orthodox members to complete halachic living wills, specifying the sort of medical care they want and designating a rabbi as their representative if they’re incapacitated. The halachic answer isn’t always to continue life support or pursue extreme measures to keep someone alive, Shafran said, but the important thing is that patients’ wishes are respected. So far, the public debate around end-of-life care has spurred only a slight uptick in demand for halachic living wills, he said.
But end-of-life care is something that both politicians and ordinary individuals should think more about, Shafran said, especially as it relates to religious convictions.
“There should be a respect of deeply held religious beliefs with regard to life and death,” Shafran said. “This is a very fundamental religious right, the right to stay alive.”
Contact Rebecca Dube at firstname.lastname@example.org