Why we need to talk about what we want at the end of life (and how to begin)

Driving Miss Norma/end-of-life

Source: Driving Miss Norma Facebook page

Have you heard about Norma, the 90-year-old woman who was diagnosed with uterine cancer last year? She got the news the day her husband Leo was admitted to a hospice facility. And two days after he died, Norma, her son Tim and daughter-in-law Ramie listened as her doctor laid out her treatment options. Surgery, chemotherapy and radiation therapy. According to Ramie, Norma’s response was, “I’m 90-years-old, I’m hitting the road.” And so, she did. Norma lived out her life on her own terms and passed away September 30, 2016.

Ramie and Tim live in an RV and had asked Norma if she’d like to move in with them. “Having recently read Being Mortal: Medicine and What Matters in the End by Atul Gawande (please put this on your reading list) our best idea was to take her on the road with us,” Ramie wrote on their Facebook page Driving Miss Norma. “Norma currently is not in pain, her mind is sharp, she loves to travel, and she is remarkably easy to be around.”

Two things stand out for me in Norma’s story. That she knew what she wanted (and didn’t want) and that her family understood and was on board with her decision.

End of life conversations

Last year, I interviewed Kristin Melville, the development and outreach director at Hospice of Southern Maine. The organization sponsored its annual Anne L. Hunter Memorial Thresholds Conference in May (2016). The topic was End-of-Life Conversations: What to Say and Do.

You don’t have to — in fact, you shouldn’t — wait until you are at the end of your life to have conversations about dying, said Kristin. Or to call in hospice. “One of the things we’ve learned is that when people are faced with the end of life, hospice is almost considered a last resort,” she told me. “We’re trying to educate the public that hospice isn’t the end. It’s the beginning of taking control of your own life and your own end of life care.”

That’s something my family discovered when my dad became a hospice patient six years ago. He had some serious health issues, including chronic nerve pain that had become unbearable. When his hospice nurse suggested that he go to Gosnell Memorial Hospice House in Scarborough, I freaked out. I thought it meant he was dying. She said she thought they’d be able to get his pain under control and that it was possible he could go back home again. That’s exactly what happened.

While he was there, the team also facilitated some important conversations. My father was never eager to share his feelings, but they drew him out. Always the reporter, I took notes. One day he gave me a sideways glance and offhandedly said, “I hope you’re getting this all down, Diane.” I smile whenever I think of that moment.

Getting people to talk about death, whether it’s their own or a loved one’s, isn’t always easy. Not even for Kristin. “No one wants to talk about it, “she said. “I would want to have a conversation with my mother and she’d say, ‘Honey, don’t worry about it. I’m going to live forever.”

But we don’t live forever. And sometimes we’re faced with a serious illness and forced to make decisions we’d rather not consider. Or our families have to make them for us because we never made our wishes known.

Quality of life

Most people want to avoid suffering at the end of their days, said Kristin. They want to be with the people they love, to feel human touch. They want to be as alert as possible. And they don’t want to be a burden. But they need to share what they want with their family and with their health care providers. “People are starting to see that they have options and that they can make good choices at the end of life,” she said. “With the help of palliative care programs and hospice, they’re looking at how they can spend their last days. They’re becoming more informed about what’s happening in the medical world. They’re trying to have the best end of life experience possible.”

Physicians can now bill Medicare for discussing a terminal diagnosis, hospice care, and other end of life issues with their patients. But talking to a patient about his/her impending death may be hard for some of them. After all, their role is to save lives and if one can’t be saved, isn’t that a failure? No, said Dr. Diane Meier. She’s the director of the Center to Advance Palliative Care and she’s passionate about giving people access to palliative care.

Palliative care focuses on the quality of life for seriously ill patients and their loved ones. “This is important,” said Dr. Meier in a short video on her website, “because people are living now for many years, even decades, with serious chronic diseases and while we’re great at treating those individual diseases, we need to do more to pay attention to the person, the human being who is living with that disease and the experience of their family.”

Dr. Meier was the keynote speaker at the Thresholds conference. Her goal was to give healthcare professionals and the general public — you and me — a step by step guide on how to start the conversation about end-of-life issues.

What about you? If you found out you had a serious illness, how would you want to be treated? Maybe you’d want every medical intervention that was available. Or maybe, like Norma, you’d like to have a cross country adventure with the people you love. It’s your decision. That’s what matters.

Driving Miss Norma/End-of-life

Source: Driving Miss Norma Facebook page

If you’d like to learn more about palliative care, listen to this podcast I did with Dr. Meier.

Diane Atwood

About Diane Atwood

For more than 20 years, Diane was the health reporter on WCSH 6. Before that, a radiation therapist at Maine Medical Center and after, Manager of Marketing/PR at Mercy Hospital. She now hosts and produces the Catching Health podcast and writes the award-winning blog Catching Health with Diane Atwood.