From "What's the Matter With You?" to "What Matters to You?"
Talking to The Conversation Project about what's important at the end of life.
We are two journalists writing about family and caregiving from a feminist perspective. Research, interviews and personal stories connecting systemic issues and family life; also, 40+ mom humor. You can read past issues here. follow us on Instagram here. Click below to get this newsletter in your inbox, free.
My father died four years ago this week. He died of aggressive prostate cancer, which moved fast through his otherwise healthy body. He died at home, with me and my stepmom, his sister and cousins, my husband taking care of our two-year-old in the next room. My parents split up when I was three, but my mother was there the day before Dad died, to hold his hand and say goodbye.
When I sat with my dad, I read the Tibetan Book of Living and Dying, and watched this video featuring the Irish writer Kevin Toolis, which tells a story about Irish wakes, in which women sing their prayers, and children play at the foot of the coffin, and hundreds of people show up at the funeral to shake hands with the bereaved, “so many times that your bones began to ache.” It’s a way of fighting denial, Toolis says. With every handshake, you’re meant to understand, “They’re dead. They’re dead. They’re dead.”
In the months leading up to his death, I had a handful of frustrating calls with the social worker at the hospital where he was being treated. One afternoon at work, I was standing in a stairwell at my office, asking, “When do we start talking about hospice?” and their answer was confusing and vague, and it occurred to me only years later that it probably wasn’t the right question to ask. But what do you ask when your dad is facing down death?
I had a strange memory of what it had been like going into active labor: What the F is this, and how could I have been more prepared?
I now know, of course, that there are many ways to get more prepared.
There are death doulas, and podcasts about death (“Conversations on Death,” “The Death Dialogues Podcast Project,” “Ask a Death Doula” come up at the top of an Apple podcast search), and resources like Re-Imagine, which highlights workshops and end-of-life training that any of us can participate in.
“Death positivity” aside, there are practical reasons to get more comfortable talking about the end of life. As Dr. Eleanor Feldman Barbera, a psychologist who specializes in elder-care, told me a few months back, “People procrastinate…and then there's a crisis. Somebody has a fall, or some sort of health crisis, and then a lot of decisions need to be made in a hurry.”
Another way of saying it: “Conversations clarify.”
That’s what Kate DeBartolo, the Senior Director of The Conversation Project, told me when we spoke recently. The Conversation Project is an initiative within the Institute for Healthcare Improvement that helps people have conversations about how they want to live through the end of their life.
“We need to normalize these conversations earlier,” DeBartolo told me. “It's almost easier to talk about it at the end of life if you've been talking about it for the last few decades.”
Their “starter” kit – available in English, Spanish and Chinese –offers an 11-page guide to having conversations about what matters to you about your health care.
“What does a good day look like for you?”
“What or who supports you during difficult times?”
“Try finishing this sentence: What matters to me through the end of my life is…”
It also offers guides to choosing a health care proxy, how to talk to a healthcare team, and a guide for caregivers of children with serious illnesses.
The materials are practical, direct, and presented without judgment: There’s no one right answer about how to approach the end of life, they imply. Just talk about it.
The Conversation Project’s work, DeBartolo says, is about helping folks figure out, “who can you talk to about this, so the odds get higher and higher that your wishes will be honored.”
DeBartolo and I spoke about the best ways to use their guides, how their work addresses health equity, and how their guides can help bring joy back into the lives of health care practitioners, in addition to those of us they serve.
(Our conversation has been edited for length and clarity)
One of the key questions you have folks ask themselves at the beginning of the Starter Guide is: “What matters to me through the end of my life is…” Why do you start there and what are the kinds of answers you get to that prompt?
We try to start with an open-ended question. It’s not medical; it’s not legal. Just thinking about what matters most to you, and that that can change. You can talk about this again, later, and your wishes can change.
There’s research from Dr. Michael Barry and Susan Edgman-Levitan that was part of a shift in medical care, moving away from “What's the matter with you?” and towards “What matters to you?”
So that might be, “I've got to make it to this wedding in two months,” or “I really need to be able to walk my dog,” or “I can't wait to meet a great-grandchild who's going to be born in three weeks.” There's a range of kinds of answers that people might have, and how they interpret that question is different also.
The Conversation Project resources originally started as being about end-of-life care. In the last 10 years, we've adapted that. It's so much more about how you want to live your life through the end, and not how you want to die.
It's also hard to ask a layperson to answer a lot of hypothetical medical scenarios. But we can focus on what matters to you.
We also offer scales when it comes to your medical care: Are you concerned about receiving too much care or too little care? By providing some options – “Where do you fall along this scale?,” it allows people to say, “Oh, I do have an opinion on that.” Or, “I can respond to that prompt.”
Why is it important for me to be able to say that to my healthcare provider?
We think it's important for a person to communicate the plan with your provider based on what your wishes are. It gives you a grounding for gut-checking: “Is this medical choice actually going to honor what I'm looking for here?”
For some people, they may feel like they want as little pain as possible, or they want to be able to communicate as much as possible, so they’re willing to say, more pain, but I can make medical decisions.
And It's not just for end-of-life scenarios. This is for any medical decision, or living with a serious illness. If I know [as your health care practitioner] that your employer is not going to let you take a break to check your blood sugar, then maybe we're going to pick a different treatment course for your diabetes management.
Atul Gawande, who wrote Being Mortal, talked to us about how so many patients or family members would come to him and say, “I don't know, Doc, what would you do if this was your mom?”
“[He would say] I don't know your mom. What does she like to do? How important is getting back to ballroom dancing? How comfortable would she be if she's homebound? We need to understand who the person is, rather than what I would want.”
It makes 100% sense. It's an easier and maybe more heartfelt connection to have about what matters to you, as opposed to, like, “Hey mom, How do you want to die?” There, the answer is “I don't want to die! Conversation over!”
Yeah. There’s this sense of some conditional control. We can't control everything, and we want to be careful about over-promising that if you state these wishes, that they will be perfectly honored exactly as you want.
It's a little bit like birth plans: you can come up with a plan for what you hope will happen. That medically may not be what plays out, but the care team is generally operating under an understanding of what matters to you and and what you want.
And that’s another example of another medicalized process, and people were the ones saying, this is not just a medical experience. This is a life experience, and I've got opinions and thoughts.
So when we have so little control over some things, we can have some conditional control here.
I feel like one reason these conversations are so important now is because science and technology and medicine have gotten so advanced in the last few decades. We didn't used to have as much of a say. If you had a heart attack, or a stroke, or cancer, there wasn't that much that could be done. Now we have a lot of options.
But we don't need everybody to be a medical expert. They need to be an expert in themselves and what matters to them.
Sometimes what matters is not having to decide. We know people who are like, “I don't care, I want my kids to make the decision that the time comes.” That is a conversation in and of itself.
You talked about birth plans. I'll just say for myself, before I got pregnant, I really didn't know much about childbirth. And I knew almost nothing about death and serious illness until my father got sick. So this work that you're doing is not just about individual conversations, but seems like culture change work. What are you seeing in how the culture is shifting around talking about end of life?
I see our work fitting into buckets. We want to have immediate tools available for somebody if they need to figure out how to have a conversation today.
“Somebody I care about just got a really tough diagnosis. What do I do? I’m someone’s health care proxy. How do I do that?” We have those resources available.
And, we want the “culture change” piece and normalize having these conversations. We want people to think about their sphere of influence. When you have a friend who might end up in a similar situation [with a sick parent], to be able to share resources with them. National Health Care Decision Day is coming up. So checking in with friends to ask, “ Do you guys have a health care proxy?” This is one of those things that’s always on the to-do list, that never feels quite as pressing as the thing that really has to get done that weekend.
The age of visitors to our website has gone down a lot over the last few years. I think right now more than half of our visitors are under 45. People who are bringing it up with grandparents, so more intergenerational or skip-generational. So that's been exciting for us to see.
And I find myself drawn to this work, not only for the person at the center, whose wishes we are trying to honor, but even more so lately for the survivors. The experience of grief that people can have and how complex or complicated that grief can be. If people can grieve the loss of the person, and not all of this extra grief around the uncertainty that went along with the loss. That to me is what I'm particularly driven by.
Yeah, the rehashing of what happened and how it happened and didn't happen the right way, and who did it right and wrong. I imagine that there are certain times when people find certain points to be particularly hard to talk about. How can people get unstuck, if they do get stalled out in this process?
I would start by saying it doesn't all have to happen at once. Especially if you're the one trying to bring it up with someone, rather than forcing it – and especially if somebody is older or frail or sick – really being respectful of what they can handle at the moment.
It doesn't have to be one mega-conversation that you can never revisit.
The pandemic was a great example of that. I remember a gentleman who had told his family and his doctors that he wanted no extreme measures. He was 90-something years old. He lived a good life. And then, he was in the ICU, with full care, and extreme measures being taken.
And his doctor was like, “What's going on, I thought we had a plan?”
And he's like, “My first great-grandchild is due in two weeks, and I will do anything to meet that person. Then we can go back to the original plan.”
That to me is a perfect example of health systems, where people have to be able to be flexible, and that folks' wishes can change.
I’m curious how you think about healthcare equity? I was reading a piece in The Washington Post about this young man, 38, whose father dies. He goes through his father's stuff and the father has died in debt, and nothing was known about the father's financial situation. It was really more of a story about the kind of collapse of the middle class, but it's centered around this end-of-life moment. This is from the article: “For 23% of Americans who've died in the past five years, the ultimate financial worth of their lives was zero.” I’m just curious if you have thoughts about how conversations like these have any effect in those kinds of circumstances.
I would say that 10, 15, 20 years ago, a lot of the people having these conversations were upper middle-class white people who had the means and the time, and the expectation that their wishes will be listened to. That this was sort of an elite conversation. “I have an opinion, somebody better listen to it, and I expect it to be honored.”
There are a lot of people for whom that is not their norm or experience with health care.
I remember speaking to a group in St. Louis and at the lunch break, a Black woman came up to me and was asking about the name of the initiative. “In my community, when we talk about having ‘the conversation’ in our family, it’s about police brutality. And we'll talk about it with our children in that way.” That’s there. That’s valid.
We have actually found in some research that it's not that certain demographics do or don't have conversations. It's more about why we have conversations. Some people are anxious about their health care, and that makes them want to talk about it. And some people are anxious about their health care, and that makes them not want to talk about it.
But the idea that conversations clarify, and having some conditional control, those are actually two things that are universal for everyone.
It's not an expensive thing that you have to do with an attorney. This is something you can talk about at the kitchen table, which makes life a lot easier for people.
Is there anything I should have asked about that you want folks to know about how to use this work? Any other piece of this that you would want folks to know about?
We haven't talked that much about the healthcare side, or the clinicians. There's this whole world of burnout – it’s like this second tsunami or second pandemic of what's happening with healthcare workers, who are so rundown by the pandemic.
When we've done this work with clinicians, they often feel. “This is why I went into health care in the first place.” This has a real chance of bringing joy back into work for clinicians.
I think sometimes they're nervous about bringing it up, but there's a real potential to get back to providing the kind of care people want.
Thanks for this hugely important guide.There is so much to think about and talk about when it comes to the subject of death and dying, which for many is taboo. This should help us all think about how to proceed.
I have been thinking about this subject lately, and this seems really timely. I like this conversation idea so much because it feels reflective, not just sad. Like, who are you, what do you most want out of life? "What does she like to do? How important is getting back to ballroom dancing? How comfortable would she be if she's homebound? We need to understand who the person is..." This feels like a way of honoring and knowing someone, not just planning for the worst.