Harvey Ballen still considers himself lucky for recovering from a heart attack that sent him to the hospital five years ago.
"I came home very clear that I'm not immortal," said the 82-year-old resident of Huntington Valley.
With that in mind, he and his wife, Rhoda, downloaded a template for a living will, putting in writing what measures doctors should take if they become unable to communicate or must depend on a machine.
Still, they have yet to designate which of their three grown children will be in charge of making those decisions, or talk to them about the issue beyond an offhand quip about who wants to volunteer to "pull the plug," said Rhoda Ballen.
"Up until a few years ago, we joked about end of life," said Rhoda Ballen, 75. "Now, it's not so funny."
Nobody wants to have these conversations or ask the hard questions about what defines quality of life, said Susan Denman, the state director of a Medicare program designed for nursing-home residents, speaking before dozens of people gathered at Main Line Reform Temple Beth Elohim in Wynnewood.
But better to think and plan for those issues now than to leave doctors and children with such a heavy, controversial burden, continued Denman.
"Even if the answers are not good ones, they're more comforting because it's more comforting to know that there's something before you and not just scary blackness," she said.
At least, that was the liberal perspective shared by the four panelists at "Ethical Choices When Medicine Can't Save Your Life," presented by the Jewish Social Policy Action Network two days before the fourth annual National Healthcare Decisions Day on April 16.
The panel, which included experts in geriatrics, health care law, Jewish ethics and palliative care, spent nearly two hours examining the universal topic through a Jewish lens. Regardless of religious or political views, the one thing the discussion made clear is that there is no clear, easy formula when it comes to end-of-life planning.
It's About How You Live
The first hurdle is coming to grips with mortality, according to Fox Chase Cancer Center doctor Michael Levy, recounting comments from European colleagues who joke that Americans are the only ones who think death is optional.
Levy, who oversees ethics and palliative care programs at the center, as well as serving as the vice chairman of the medical oncology department, said he still finds sticky notes on patient charts saying, "Don't tell Mom she has cancer."
"It's about how you live, not how you die," said Levy.
Once a person recognizes the need to plan for death, the panelists agreed that the specifics — like defining what constitutes quality of life — should be a personal process.
How Judaism figures into that depends on who you ask. While some Orthodox rabbis would consider unhooking a ventilator an act of murder, Rabbi Richard Address of the Union for Reform Judaism said that might not be such a bad thing, depending on the context.
He encouraged the audience to inform their choices through Judaism by weighing the value of pikuach nefesh, which allows the strictest rules to be broken in order to save a life, against specific circumstances.
Perhaps the obligation to perform pikuach nefesh doesn't apply if someone has a chronic condition or other medical indication that death is imminent, he said.
After all, he continued, in Judaism, the body does not belong to individuals; "it is a gift" that eventually ends. Jewish prayers do not seek cures to diseases, but spiritual healing, he said.
Ultimately, the panelists said, individuals should try to outline their preferences, if for no other reason than to save family members and doctors from having to bear that burden.
Making those wishes clear is where legal professionals or patient advocates come in, said Barry Furrow, an associate fellow at the University of Pennsylvania Center for Bioethics who specializes in health law. Even if children disagree with them, Address said, in the eyes of Judaism, their obligation to honor their parents takes priority.
That point struck a chord for Lani Moss. Her mother did have a living will, Moss said, but it designated both daughters as decision-makers, which created conflict when their opinions diverged.
"I don't want my daughters to be in the same situation," said Moss, 55, of Cheltenham.
Talking to the rabbi helped them come to grips with the situation, she said: "He didn't tell me what to do, but he listened."
The panelists encouraged the audience to re-evaluate and perhaps update their living wills every few years to take into account new technology and changing tolerance for pain.
"You should never do nothing," said Levy. "Given the wildcard of technology, it is absolutely essential that we have this conversation before the crisis comes."