It’s not easy to face our own mortality, and perhaps even harder to imagine losing our loved ones. Which is why many of us just avoid the issue.
Whether your reticence comes from anxiety, religious superstition or fear of engaging with a morbid subject, experts advise everyone to consider these issues earlier rather than later, even when you are young and healthy. Some rabbis even encourage newly engaged couples to discuss advance care planning before their wedding and to revisit the topic when a child is born or around other lifecycle events.
Why You Shouldn’t Wait
Why the rush? If you delay thinking about what you want for the end of your life, you and your loved ones may end up forced to make difficult decisions very quickly and under duress. And you may be in no condition at that point to articulate your decision, leaving your loved ones to guess about your preferences. According to a recent report by the Pew Charitable Trust, 70 percent of Americans over the age of 60 had to make a decision about treatment during their last week of life but were physically unable to communicate their wishes to family or clinicians. Only about 1 in 3 has completed an advance care plan for the end of their life.
“Too often, we see families stuck in situations they could never have imagined, as a result of not having had conversations before loved ones lose the ability to make decisions for themselves,” says Melanie Levav, a rabbinical student at the Jewish Theological Seminary in New York who works as a hospice chaplain. “Gaining clarity on how we wish to live as we approach death is a vital conversation; none of us will survive death, but all of us have the chance to live well.”
What The Talk Should Include
End-of-life conversations can include a number of issues, such as who we want making decisions about our health when we are unable to do so on our own, where we want to be treated (At home? In a hospital?), how many medical interventions we want doctors to use and where (or if) we want to be buried. Toby Weiss, director of cultural sensitivity and Jewish programming for MJHS Hospice and Palliative Care in New York advises family members to check in about these topics often and alter their previous plans if their feelings have changed.
Not only is it important to draft an advance directive in which you designate a health proxy to speak for you, Weiss says, but you have to actually speak with your proxy — and yourself. “The hardest conversation to have is the one you have with yourself first,” Weiss says. “That’s the one people avoid most.”
There are a number of reasons to push past the discomfort, however. Rabbi Charles Rudansky, director of pastoral care for MJHS Hospice and Palliative Care, counsels families to discuss these issues sooner rather than later to allow “the person that is dying the opportunity to make decisions on their own terms.” He wishes there wasn’t “such a taboo among Jews who feel they shouldn’t talk about death or dying or that we are a religion that should only focus on life.” He wishes these kinds of conversations were at the front and center of Jewish life, not just in nursing homes and in hospice but well before that time.
One of the most important reasons to discuss these issues before it’s too late is to remove any sense of guilt one’s family members might feel if they are forced to make decisions for a loved one without an advance care directive. Simple questions like whether or not to install a feeding tube can create anxiety and uncertainty for family members. And modern medical advances can add to the difficulty.
Dr. Alex Hakim, director of the ICU at Providence: Little Company of Mary Hospital in Torrance, California explains, “Medicine was easier when the loved ones of a patient came to the physician and said ‘do everything you can,’ because ‘everything’ meant a limited set of procedures and medications. Now that we can literally bypass failing hearts and lungs with mechanical devices or chemically maintain the pulse and blood pressures of near brain dead individuals, patients who are actively dying can be maintained in a near death state for months and sometimes years at a time. From my experience, having the discussion with your immediate relatives and friends about what you would accept in an end-of-life situation and what life and a ‘good death’ mean to you are immensely beneficial.”
End- of- life conversations can go beyond plans for medical care and touch on the realities of where participants want to be buried, whether they are comfortable with cremation, what they want their funeral to look like, and how they want to be remembered once they are gone. It can also give loved ones the opportunity to share with each other feelings that are often reserved for eulogies and never heard by the family member when they are gone.
How To Start The Conversation
There are a number of ways to initiate an end-of-life conversation with your family or friends, and it doesn’t have to be awkward or uncomfortable.
It’s sometimes helpful to bring in a third party like a trusted social worker, doctor, or rabbi to help families engage in end-of-life discussions. Medicare will pay for advanced care planning conversations between doctors and patients, so this is something to consider bringing up when accompanying family members to their medical appointments.
Another resource is the Death Over Dinner project, which helps facilitate group conversations on death, offering explanatory invitations sent to guests and guided discussion topics for the hosts. With her husband, Sarah Benor, professor of contemporary Jewish studies at the Reform movement’s Hebrew Union College-Jewish Institute of Religion, hosted a Death Over Dinner event for friends while their kids were away at sleepaway camp. “Even though it’s talking about death, the way it’s set up is also talking about life, how you want to be remembered, and what you want to do in your life,” she said. “We talked about bucket list things, and there were also people who had lost parents and other loved ones who talked about their losses. It was a little bit about life and a little bit about mourning and a little bit about how we expect to want to die. It made me feel closer to my friends to hear about their mourning experiences. These are really personal things, things you don’t share with a lot of people, so I guess it was a bonding experience for us, a community building exercise.”
Elizabeth Saiger was motivated to host an end-of-life conversation for a group of parents from her daughter’s nursery school after attending a how-to seminar through Ikar, her synagogue in Los Angeles. “We talked about what our eulogies might be like, what we hoped people would say about us, and we shared a story or a moment we hoped would be definitional of who we were,” she said, adding, “While I think a conversation around medical interventions and end-of-life care can be fruitful, it was nice to take it up a level and talk about what we valued.” Saiger and her invitees created such a bond after their initial meeting that they decided to keep the group going and have since met monthly, branching out into other difficult-to=talk-about subjects.
These discussions don’t have to be depressing, notes Melanie Levav, the rabbinical student and chaplain. “Taking care of the business of death lifts up the sacredness of life,” she says.
Resources To Help You Get Started
The Death Over Dinner Project
The website allows, you to plan a dinner party, invite guests with a customized scripted letter, send them related reading materials to engage with before meeting, and select conversation starters to help introduce the topic and why it’s worth talking about. There is also a Death Over Dinner: Jewish Edition available.
Attend a Death Cafe
A gathering, usually of strangers, who come together over a cup of coffee and talk about death. There is no formal script to follow; the goal is to create a space where people can talk about death in order to better appreciate life. Social workers often agree to host these conversations. You can look for one near you on their website.
The Five Wishes Brochure
This document helps families organize these conversations by asking specific questions (meant to be answered and recorded) about end-of-life care, like who the person wants making health care decisions for them, what kind of medical treatment they want, how comfortable they want to be and how they wish to be treated.
Talk to a Rabbi
A rabbi can help you initiate these conversations with your family members and give you suggestions on some “opening lines” to begin these talks drawing from their own personal experiences with your loved ones.
The Conversation Project
If you don’t have a rabbi, begin the process yourself with something like The Conversation Project which offers a starter kit for these talks.
After you’ve had these conversations, a website like Gyst.com can help you put together a living will, an estate will and order life insurance.
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