How To: Navigate end-of-life care and related conversations
Daryl J. Cady
This year saw the rise of an unlikely travel personality — Driving Miss Norma.
Miss Norma, whose real name is Norma Bauerschmidt, is a 90-year-old woman from Michigan who is currently traveling the United States on an epic cross-country tour.
Two days after Norma's husband of 67 years passed away, doctors told her that she had what could likely be terminal cancer. There were options — surgery followed by months of radiation and chemotherapy, everything you might expect with a cancer diagnosis — or something very different. Norma chose something very different. She chose to hit the open road with her son, daughter-in-law and their two dogs.
Norma's choice is an important lesson for all of us — what might be right for one, may not be right for another. Norma's story is an inspiration and being covered wherever she goes. While some may think, “Well, of course, she's 90,” her story illustrates just how important end-of-life and advance care planning conversations can be.
When we receive a difficult or terminal diagnosis, we naturally gravitate towards discussions of curative treatment and focus primarily on the illness, and that's okay. However, turning our attention to the entire patient, not just the illness, and having conversations about our quality of life, is just as important.
As patients, we look to our doctors to guide us. However, new studies show that physicians are often unprepared to have these conversations. A recent national poll conducted by the John A. Hartford Foundation and California Health Care Foundation shows that while virtually all physicians agree that talking with patients about end-of-life and advance care planning is important, nearly half report sometimes feeling unsure of what to say and less than a third report having had any formal training on speaking with families about end-of-life care.
At our recent “Thresholds Conference” and in the first of a series of community forums, we outlined how to begin these conversations, both from the doctors' point of view, and from the perspective of patients and their loved ones.
- Research and understand: As a family member or friend of someone with a serious illness, try to understand the illness and consider your loved ones concerns as a whole — what might they want, what is important to them — and gently begin a conversation. You might say, “This must be very difficult for you.”
- Set aside time: These can be very difficult conversations. Dedicate enough time to fully discuss questions and wishes, and be sure to have the right people as part of the conversation. Ask questions. It's important to think about what you want and ask questions of your physician that address your priorities. Understand that your doctor doesn't want you to feel that they are giving up on you so let them know that you want to understand all of your options. Listen to understand. Listen to learn what's important. Let everyone express his or her thoughts. If it's important to be with family on the open road, like Norma, then being held to a schedule of radiation, chemotherapy or recovery from surgery may not be what's best.
- Be open: Whatever your point of view and your feelings about the decisions being made, share your thoughts, be open and honest and provide appropriate support. It's important to remember that calling a hospice doesn't mean you're giving up. It means you're taking charge. These conversations can be uncomfortable and difficult, yet at the end of life, having discussed ones wishes can make all the difference.
Hospice of Southern Maine's community forums being held throughout the rest of the year provide an exceptional educational resource for patients, families, and clinicians alike on the important topic of end-of-life conversations.
Daryl J. Cady, CEO of Hospice of Southern Maine, can be reached at dcady@hospiceofsouthernmaine.org
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