Speaking of Psychology: Making talking about death easier, with Brian Carpenter, PhD

Talking to loved ones about important end-of-life decisions can spark a complicated land mine of emotions. So much so, many people put it off until it’s too late. In this episode, Brian Carpenter, PhD, talks about why it’s important to have these conversations and how to approach these discussions successfully.

Brian Carpenter, PhD, is a professor of psychological and brain sciences at Washington University in St. Louis. He conducts research on the clinical psychology of aging, focusing on family relationships in late life, with an emphasis on family communication and decision-making. He also studies older patient-physician interactions and mental health issues at the end of life.

Audrey Hamilton: Hello and welcome to Speaking of Psychology, a podcast produced by the American Psychological Association. I am your host, Audrey Hamilton. In this episode, I talk with a psychologist about having those difficult but important end of life discussions with your loved ones. Psychology has a lot to add in terms of what we know about how people make decisions, manage their emotions and handle relationships -- all things that can affect how we approach these discussions.

Brian Carpenter: These are difficult things for people to bring up. They’re not sure how to do it. But we know it’s important for them to plan and to think ahead. So we want to give people a sense of confidence and competence that they know how to bring up these topics.

Audrey Hamilton: Yes, I know, talking about death sounds depressing but if done properly it can actually lead to less stress as loved ones age and more benefits over time.

Brian Carpenter is a clinical psychologist and professor of psychological and brain sciences at Washington University in St. Louis. His research focuses on family relationships and later life, particularly on communication and decision making. He helps families face and address important end-of-life decisions, such as advanced directives and other healthcare related decisions. Welcome, Dr. Carpenter.

Brian Carpenter: Thanks. It’s great to be here.

Audrey Hamilton: Nobody likes to talk about death. I mean, particularly with loved ones especially when everyone’s healthy and happy. But, your research and clinical work have shown that it’s best to deal with end-of-life issues as early as possible. What should people be talking about with their families and why or loved ones?

Brian Carpenter: Well, you’re right that nobody finds these topics particularly easy to talk about. But they are topics that everyone will need to face at some point in their life and that’s true for family members and their close friends but also true for themselves. These are really universal issues that everybody needs to be thinking about. That doesn’t mean you need to be thinking about them every day, all day long, but a little bit of advanced thinking and planning can really yield some benefits in the long-term.

So, I like to suggest that people think about how they want their life to play out as they grow older. Now again, I’ll mention though that these are not just issues that are relevant to older adults. People can die at any age, as you know, although most of the people who do die are older. But being ready for the end of your life is important no matter what age you are because it can happen to anybody at any time. So it’s important for people to at least start thinking about what they would like their end-of-life to look like, how they want it to play out, what kinds of care they’d like to have, what kinds of care they might not want to have at the end of their life and how they want other important people in their life to be involved. How do they want them to be involved in terms of taking care of them, helping them with their care, arranging for care and how they might be helpful in making decisions for people close to the end of their life when some people may not be able to make decisions for themselves.

Audrey Hamilton: Can you give some examples of, let’s say someone that you’ve worked with or other families that you’ve worked with and when you sit down with them and talk about these issues, what kinds of questions they have for you?

Brian Carpenter: Sometimes people aren’t even sure where to begin the conversation. What are the right topics for them to be talking about? So often we talk very simply by talking about the things that are important for people to consider. And that includes thinking about where they want to live; what kinds of housing they might like to have toward the end of their life; where they might like to be if they have serious illness or might be approaching the end of their life – would they prefer to be at home, in a hospital, some other residential setting – and there are benefits and drawbacks to all of those options. So housing is one thing that’s important for people to think about. Medical care obviously is another one. What kinds of medical care do people want? And what kinds of medical care do people think they might not want as they become more sick.

Another topic would be finances. Family members and close friends you want to have in your life need to know what your financial situation is, where are important documents kept regarding your finances and another topic is the actual end of life itself. How do you want that to play out? And for some people, what do you want to happen after you die? What kind of arrangements do you want to have? Who you want to be there? Who you want to be involved? What might a service look like? So a little bit of planning, even though you’re not going to be there about how you want your life to be after you’re gone.

Audrey Hamilton: So all of these things you’re talking about – you can hit on a lot of hot, controversial buttons within your own family – finances, family members, loved ones – how do you recommend bringing it up? Do you bring this up at your holiday gathering or do you do it via email? It is particular to each situation, I imagine, but how do you recommend people go about it?

Brian Carpenter: You’re right. Every family is going to be different. Every family has its own style, its own personality, its own norms about how you talk about these sensitive topics. So everybody needs to think about their own individual family and what might work best for them. As a rule, I don’t encourage people to have these kinds of conversations at important family events like holidays or other kinds of gatherings. There’s enough going on at Thanksgiving, for instance, that you don’t really need to have a deep conversation about death and dying in the context of your Thanksgiving dinner. Some people think that it’s logical to do it then because people are together in the same place.

Audrey Hamilton: Let’s break out my will and let’s talk about…

Brian Carpenter: Shove that pumpkin pie aside and let’s talk about that. So, I think that people should really think about these conversations as more of a process than an event. It’s not something that you should think about doing once and then it’s over with, but these are conversations and issues that people should become comfortable talking about so that they can maybe have small conversations, break it down into bite-sized pieces over a longer period of time.

Audrey Hamilton: And why do you recommend that?

Brian Carpenter: One reason is that people’s opinions and attitudes and beliefs might change over time so if you have this kind of conversation at one point in your life and then something meaningful happens to you or your loved ones, there’s a divorce, or a change in your marital status or someone else in your family or someone you’re close to has something serious happen to them, or some major story in the news happens and you see how a person’s end of life played out, that can change your opinions about how you want to be treated. So even if you’ve had the conversation, it’s important to go back and revisit these issues when people experience important changes in their life.

Audrey Hamilton: Now, you’ve been doing some research to try and develop tools for families, aiding them in these types of decisions and online tools. Can you talk about that research – what you found?

Brian Carpenter: Originally our goal was to try to figure out how we can help people know their preferences, their family members’ preferences for the things we’ve been talking about better. Because when you survey family members and ask them to predict how an older mother and an older father would want to be taken care of, family members are notoriously bad at being able to predict those things with any accuracy. In fact, some of our research suggests that you might be just as accurate at picking a person at random off the street and asking them to guess what your mom or dad would want at the end of his or her life. So, our first goal was to try to figure out could we educate people and help them become more knowledgeable. And that’s one aim of this research.

The second aim, though, and I think it’s become a more important goal for me is simply to get people to feel more comfortable talking about these things. As you said, at the beginning, these are difficult things for people to bring up. They’re not sure how to do it but we know it’s important for them to plan, to think ahead. So, we want to give people a sense of confidence and competence that they know how to bring up these topics and they can have a conversation and it can turn into some product or output that’s going to be helpful for them down the road.

Audrey Hamilton: What about older adults who are struggling to even come to terms with aging or even death. Do you find it gets easier as they get older or more difficult?

Brian Carpenter: Everybody’s different. So, I think for some people as they approach the end of their life, there’s some natural reflection about what their life has meant, a kind of attempt to make sense of what their life has been about. And with that can bring some trepidations, some worry that their life is coming to a close. Maybe focus on some regrets that they might have, things they might have wished that they’d done differently, things they might have wished that they had said to people or not said to people, as the case may be. So, for some people, I think, the approach at the end of life can be worrisome. For other people , not so much. They’ve found a way to live a life that’s been satisfying to them. They realize that it’s going to come to an end, it does for everyone. And, if people can feel some sense of peace and understanding and kind of integration of their life, those people don’t necessarily fear death or even talking about death. In fact, when I started doing some clinical work in this area I was surprised at how receptive people were to talking about these things because they’d been wanting to talk about these issues, but nobody around them wanted to do it. So, when you ask a person to talk about the end of their life, in my experience, many of them are anxious and welcome the opportunity.

Audrey Hamilton: Gives them an opportunity to express their feelings on it. I kind of am curious, because you’re a psychologist, a lot of the issues that you’re talking about – advanced directives, medical care – I mean, those are the purview of an attorney, a physician who is working in gerontology, or any other kind of profession like that. Why is talking about end-of-life issues a psychological issue?

Brian Carpenter: Well, as you know, the end-of-life is an experience that doesn’t unfold for any one particular health profession. That there of course are nurses and medical doctors involved in caring for somebody at the end of their life. There are also social workers, occupational therapists, spiritual and faith leaders and psychologists, who are important, have things to share at the end of life. Because the end of your life is kind of culmination of physical and biological development, but also psychological and social development. And psychology has a lot to add in terms of what we know about how people make decisions, how they manage their emotions, what can lead to successful social relationships at the end-of-life, how we understand cultural diversity and how that plays out important ways as a person is approaching the end of their life. So, psychology really has lots of different things to add at this very, very important part of an individual’s life.

Audrey Hamilton: How do you deal with – and I know you do some clinical work – when you’re confronted, let’s say, someone who has a very different idea of how they think their loved ones should die versus how that own person thinks they should die. I imagine that’s a difficult conversation to have. Nevertheless, how does it bore out usually?

Brian Carpenter: It can be very, very challenging for families and I think the key there is that this needs to be conversations, plural. You know, you’re not probably going to change somebody’s mind by sitting down or talking to them for five or 10 minutes about how things are playing out. The goal is to help people understand where each other is coming from, why they believe the things that they believe and helping those individuals reach some sort of consensus and understanding about what’s going to be helpful for that group as a unit, that family as a unit, or that care system as a unit. Because people have different needs at the end of their life and some patients want to be aware and sensitive of the people around them and how their dying is affecting those people. And those care partners want to try to respect what the person who is dying is going through as well.

Audrey Hamilton: Well, Dr. Carpenter, thank you so much for joining us. It’s been very interesting.

Brian Carpenter: You’re welcome.

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Thanks for joining us. I’m Audrey Hamilton with the American Psychological Association and this is Speaking of Psychology.