Having the tough conversation before it’s too late
‘Conversation Sabbath’ addresses end-of-life planning
In 2013 Lori Feldstein’s father was diagnosed with metastatic melanoma and died 11 months later. “He spent seven of those 11 months in the hospital, and he suffered tremendously,” she said.
“I think he was the victim of a process that he didn’t have control of,” said Feldstein, describing cycles of diagnosis, treatment, and side effects in the absence of larger conversation about his goals such as, “what kind of quality of life he wanted and what he wanted to do with the time he had left.”
A member of The Jewish Center, Feldstein works to ensure that other people don’t have the same experience. She is CEO and executive director of the Goals of Care Coalition of New Jersey, an organization that provides tools and information to facilitate conversations about end-of-life medical decisions. The group’s goal is to provide patients with the care they want and need. The situation “can be so easily changed by having an open and honest conversation with your family and with your healthcare providers,” she said.
Feldstein is one of several participants in The Jewish Center’s “Conversation Sabbath,” taking place on Nov. 3. The event is part of the Conversation Project, an organization dedicated to helping people talk about their wishes for end-of-life care. Conversation Sabbaths, where faith leaders will offer sermons about the importance of having these kinds of discussions with loved ones, will take place Oct. 26 to Nov. 4.
Presentations during and after services at The Jewish Center will be offered by David Barile, Goals of Care founder, along with Rabbi Adam Feldman, Feldstein, and Gil Gordon, Goals of Care board member and member of the Bioethics Committee at Penn Medicine-Princeton Medical Center.
Nobody really wants to talk about death. For patients, it’s too scary; for family members, it feels like giving up hope. And doctors are reluctant to bring up hospice or palliative care, because they fear it sounds like they are abandoning their patients. But, Feldstein said, “In reality, it really is changing what you hope for — cure isn’t always the right thing to be hoping for.”
Advances in the American healthcare system have made end-of-life
decisions much more difficult.
“The problem is that as all the methodologies, medications, and equipment for preserving and maintaining life have grown, we are faced with some dilemmas of how far to go with that,” said Gordon, also a Jewish Center member.
The dilemmas are compounded by living in the Garden State.
“New Jersey is the worst state in the entire country to die in,” said Feldstein. “That’s because in New Jersey we get way more aggressive and intense care than you would get in any other state in the entire country, and oftentimes that high-intensity level of care is unwanted by patients and burdensome ultimately to patients and to their families.”
Gordon had one of the two toughest conversations of his life when his father was suffering from heart failure. “He did not have a DNR [Do Not Resuscitate] order; and it was very clear from what the doctor said that he wasn’t going to recover, and it wasn’t going to be a smooth ride down,” Gordon said.
“I remember distinctly going to the hospital and talking to him about what a DNR order was, and trying to get him to sign it,” he continued. “He knew what it meant and that if he went into cardiac arrest, it was a sign that his time was up, and he didn’t want anybody to do anything heroic.”
Feldman added a Jewish framing to the complexities of end-of-life decision-making. “The Jewish imperative of keeping someone alive is important,” the rabbi said. “But then it gets to the point where we are talking about palliative care and comfort care and relieving pain, and that’s really challenging for some people to accept — that that stage has begun.”
Sometimes hospice, which Feldman may recommend, gives both the family and the patient “time to prepare for what’s to come,” he said, opening the way to important family interactions. “Once you stop fighting over how we’re going to save the person, things get calmer, and conversations get more intense, and some important things can be said and important things can be heard.”
If families don’t have conversations about end-of-life choices, Feldstein said, “you burden them with having to make a decision at a time of crisis.”
Feldman has seen this, for example, with siblings who aren’t in agreement. “They want guidance, but if they are fighting with their siblings, they want me on their side — it’s a classic challenge.” And, he added, “When you’re grieving and emotional, the fights are worse because you are out of control.”
That is one reason he is glad the Jewish Center is hosting a “Conversation Sabbath,” Feldman said, “to get people thinking and talking and having the conversations, so that you don’t fight at the end.”
When Gordon’s father-in-law was in the hospital with a heart condition and the end was near, Dov Peretz Elkins, who at the time was rabbi at the Jewish Center, gave Gordon an important perspective regarding the choices he felt pressed to make for his father-in-law. “Whether or how to prolong his life,” for example, by putting him on a ventilator.
“That’s one way to look at it,” Gordon recalled Elkins said to him. “Another is whether you are prolonging his death. Are some of the things that you are doing maybe not in his best interest — are they forestalling the inevitable and in the meantime making him uncomfortable and not accomplishing anything?”
Still, Feldman acknowledged that he can’t truly get anyone ready for the death of a loved one. “I can just help them prepare,” he said. “That’s my goal for this program: to help people prepare.”
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