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Hospice: Having an End-of-Life Conversation in the Midst of Life, Part 1

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A Conversation for Our Time

Amy Katz, rabbi of Temple Beth El in Springfield, Mass., says she has been trying to sway her congregants on pivotal social, emotional and spiritual issues through her sermons for years. But none seems to have caught their attention -- and prompted action -- more than her recent Yom Kippur sermon on the importance of family members having a conversation about their end-of-life wishes.

"One man told me that he was sitting next to his 82-year-old father, who leaned over and whispered to his son, 'Okay, we have to have this conversation,'" she recounts. She heard from the wife of another member of the audience, a former temple official who had never spoken to his family about end-of-life issues. "Apparently, he's been calling all his children and saying, We need to have this conversation,'" the rabbi says.

Rabbi Katz's sermon came to my attention when a colleague said that it prompted her own mother -- a healthy, vibrant 74-year-old -- to introduce the conversation recently on a sunny Saturday drive to the Berkshires. "She talked about who she would like as her health care proxy, what she wanted and what she didn't think she wanted at the end of life," my colleague says. "We got pretty specific, what she thought constituted extreme measures, how she wanted me and my siblings to work together, who should and should not have the last word."

My colleague and her mother are now arranging a family meeting -- most likely over Thanksgiving -- to continue the conversation, involve her siblings and their father (soliciting his wishes for himself, as well), and agree on next steps, such as getting both parents' wishes in writing.

These conversations are beginning -- and must continue -- to rise to the fore in family and public dialogue (one excellent website that is doing its part is the Conversation Project). Unlike 50 years ago when on average people died of acute conditions without prolonged illness, Americans today are living longer, often with chronic conditions, which can translate into a challenging final chapter. I have seen this final chapter met both smoothly and with great difficulty; often, the difference lies in whether family members have discussed end-of-life goals and wishes. The conversation helps in the long run, as well. Studies show that having end-of-life discussions and knowing that a loved one's wishes were followed help family members during the time of grieving.

Carpe Diem

According to a recent study by the California Health Care Foundation, 60 percent of Californians say that making sure their family is not burdened by tough decisions about their care is "extremely important" to them. Fifty-seven percent say the same about making sure their wishes for medical care are followed. Yet 56 percent said they have not discussed their end of life wishes with family (the percentage of those over 65 was significantly higher: 71 percent).

What are the barriers to discussing those wishes? Forty-one percent said "too many other things to think about right now," 26 percent "don't want to think about death or dying," and 13 percent say their "loved one doesn't want to talk about death or dying."

In other words, it is not a conversation likely to arise spontaneously on its own. Whether you are an aging parent or a concerned adult child, you must make the first move. Seize any opportunity to begin the conversation.

Here are a few suggestions:

  • A family Thanksgiving or Christmas get-together. "Mom, we'll all be together for the holidays, thinking about how much family means to us. How about we talk about some important family issues, including what you and Dad want should your health decline."
  • An annual visit to the doctor or estate lawyer. "Son, I had my annual physical today. Everything is fine, but it started me thinking long term about my health care goals." Or, "Dad, Dave and I met with our estate lawyer today, and that got me thinking about you and that I don't know your wishes for end-of-life care."
  • Reading a thought-provoking article on aging, caregiving or end-of-life care. "Mom and Dad, I read a fascinating article I want to share with you. It made me realize how important it is to talk with you about your wishes should there come a time when you are unable to speak for yourself."
There have been a number of riveting articles recently, any of which would provide an excellent opening, including:
  • New York Magazine's harrowing cover story, "Mom, I Love You. But I Also Wish You Were Dead. And I Expect You Do, Too"
  • Joel Klein's Time Magazine cover story, "How to Die: What I Learned from the Last Days of My Mom and Dad"
  • Bill Keller's recent New York Times op-ed, "How to Die," about compassionate end-of-life treatment in Britain.
  • A New York Times blog post by Jane E. Brody, "Mapping Your End-of-Life Choices" (in fact, almost anything by Jane Brody, including her book, Jane Brody's Guide to the Great Beyond, might prompt a conversation)
  • Dr. Atul Gawande's much-heralded New Yorker article, "Letting Go: What should medicine do when it can't save your life?"

Other events might include an upcoming milestone, such as a wedding anniversary or the birth of a grandchild. My colleague Cheryl Avellanet, RN, the Visiting Nurse Service of New York Hospice and Palliative liaison to Mount Sinai Medical Center, used the advent of November as National Hospice/Palliative Care Month to begin the conversation on a recent visit with her brother, who has a cardiac condition. "We were at the kitchen table, and I said, 'Listen, November is National Hospice and Palliative Care Month, so I need to ask you some questions.' I proceeded to ask him some very nitty-gritty stuff, about his wishes, his plans, what he has in writing."

Another colleague, Paul Metzler, VNSNY Hospice and Palliative Care Director of Public Education advocates assigning a health care proxy and having the attendant conversation when you get a marriage license, no matter your age. And because wishes change as people age, I recommend revisiting these decisions every five or 10 anniversaries if you start young, and even more frequently as you get older.

What Comes Next?

Okay, you have gotten your 82-year-old father's attention. Or you are an older person who has broached the subject with your adult children. Or you have introduced the idea of the conversation to your twin sister, best friend, spouse.

Now what? For more on how to structure the conversation and take next steps, as well as more about how to have family conversations once a loved one has been diagnosed with a serious life-limiting illness, please stay tuned for my upcoming posts in this series.

For more by Jeanne Dennis, click here.

For more on death and dying, click here.

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