It’s time to get more comfortable with talking about dying

More than 90 percent of Americans believe that we should be able to talk about death and dying, according to a recent poll. But only 27 percent were comfortable doing it, and 31 percent were uneasy about contemplating their own mortality.

But things may be starting to change. Since the end of the pandemic, more Americans are having conversations about end-of-life care. And The New York Times cited a perceived desire for greater openness and more dialogue in launching a new series last year aimed at exploring various aspects of death and dying.

Susan Block, head of the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute, thinks it’s time.

“I think that there has been a lot of effort in the past 15-20 years to help patients and families learn how to talk about these issues with each other and also to help medical professionals learn how to talk effectively with patients and families about serious illness and the dying process. And so I think we’re at a good time, in the sense that there are resources available.”

Block and two other palliative care physicians at Harvard-affiliated hospitals shared their thoughts on having difficult conversations about dying and what those talks can teach us.

Bridging islands

One important lesson from end-of-life care is finding ways to let patients and loved ones come together to share grief and worries.

“Patients, family members and loved ones — they’re on different islands of worry,” said Jane deLima Thomas, clinical director of Adult Palliative Care at Dana-Farber Cancer Institute/Brigham and Women’s Hospital Comprehensive Cancer Center. DeLima Thomas is also the associate director of Harvard’s Interprofessional Palliative Care Fellowship, and an assistant professor of medicine at Harvard Medical School.

Family members, deLima Thomas said, are often worried about how a patient is doing — how rapidly they’re declining and how much time may be left. Patients, she added, are often worried about the same thing, but from the other perspective. They want to “stay strong” or “keep fighting” despite declining health.

“There can be an opportunity to do something different — to acknowledge to each other what’s happening, to face it a little bit more squarely, to prepare to have that be a shared experience, and to an extent to grieve together,” deLima Thomas said. “There can be room for tenderness and grace and forgiveness and connection — all of these other things that are not as possible if people are shut down on their little worry islands.”

Block, who is also a professor at Harvard Medical School, added that having these hard conversations — connecting the islands — is not an easy process, but it is an essential one.

“Even though it’s hard to find the right words, it’s better to have awkward conversations than to not have the conversation,” she said. “I’ve seen over and over and over again a patient being deeply worried and a family being deeply worried, and they’re worried about the same thing. When somebody can help facilitate a conversation, there is such a sense of relief and of connection that is very healing and very meaningful to both the patient and the family member.”

Four things

When it is time to say goodbye, the doctors all shared a version of the same philosophy to make sure important things don’t go left unsaid.  

“I go back to the Hawaiian ‘ho’oponopono,’” said Carine Davila, palliative care physician at Mass General. “‘I love you. Thank you. I forgive you, and please forgive me.’ Those four things are a good piece of advice, or a go-to.”

According to Davila, these four jumping-off points can work no matter what state a patient is in, whether sleepy, unconscious, or having a fleeting moment of strength.

“There’s a period of time where people, as they’re dying, are getting sleepier and sleepier. And at some point they no longer have much wakeful time,” she said. “Sometimes there is a phenomenon we call the ‘last rally’ where all of a sudden they’re sitting up and having a really nice evening, or suddenly have moments of lucidity, clarity. That period tends to be fairly short.”

The forgiveness piece, Block adds, can be healing for all.

“People want an opportunity to say, ‘Thank you for all the things that you’ve done for me.’ That’s a really beautiful, meaningful, healing thing to say. And survivors carry that with them. They also want to be forgiven,” she said. “To know that that we’ve all made mistakes, we’ve all done things that we regret, and that whatever has transpired in the relationship, that there has been some peace that has been made.”

Most importantly, deLima Thomas said, is that no matter how in depth the conversations go, you say the important stuff.

“It can be fun to reminisce and do some life review. It can be fun to be really explicit about the ways that that person has helped you,” deLima Thomas said. “We just encourage people to say all the things, and then you can say them again. You can say ‘Thank you’ again. You can say ‘I love you’ again, but just say the things.”

Never too early

And lastly, doctors advise that you should say the things you want to say at the earliest possible junction. Repeating yourself, by all accounts, is better than not getting a chance to say the thing you want to.

“If you’re wondering whether you should go see someone, usually, the answer is yes,” deLima Thomas said. “Sometimes people wait for the right time, or they want to make sure that it’s close to the end of life, and I just would encourage most people to let go of that. If they worry that time is short and they want to see that person, they should get on a plane and go see that person and say what you want to say to that person.”

Davila goes back to the four touchstones of end-of-life conversations. These, she said, can and should be said as soon as possible and as often as possible.

“I don’t think you can ever say ‘I’m sorry’ and ‘Please forgive me’ enough,” she said. “I don’t think you can say ‘Thank you’ and ‘I love you’ enough. I don’t think there’s a max on that.”