‘Harvard Thinking’: Facing death with dignity

Chris Berlin: I believe that dying itself is not the hard part, but it’s struggling to keep living, and that’s where a lot of the pain is. The body does everything it can to keep going until it can’t anymore.

Samantha Laine Perfas: Death is inevitable. And yet it’s something we struggle to deal with culturally, socially, and in our medical establishments. Many face long deaths in hospitals, while others wrestle with whether or not to undergo life-extending treatments. How do we confront death — as patients, counselors, and healthcare professionals — in a way that honors the fullness of life?

Welcome to “Harvard Thinking,” a podcast where the life of the mind meets everyday life. Today, we’re joined by:

Tracy Balboni: Tracy Balboni, a physician, a radiation oncologist. I practice at the Dana Farber and the Brigham and Women’s Hospital and I’m affiliated with Harvard Medical School.

Laine Perfas: She’s also a researcher who focuses on the role of spirituality in the care of patients with life-threatening illness. Then:

Berlin: Chris Berlin, I am an instructor in ministry and spiritual care and counseling and Buddhist ministry at Harvard Divinity School.

Laine Perfas: He was also a clinical chaplain at Dana-Farber Cancer Institute and at Brigham and Women’s Hospital, and teaches at Harvard Extension School, including courses in mindfulness, compassion, and enlightenment. And finally:

Mildred Solomon: Millie Solomon, I’m a professor of global health and social medicine at Harvard Medical School.

Laine Perfas: For the past 20 years, she’s mentored Harvard-affiliated healthcare professionals in bioethics. She’s also the president emerita of The Hastings Center, an international bioethics research institution.

And I’m your host, Samantha Laine Perfas, and a writer for The Harvard Gazette. In this episode, we’ll explore how to improve end-of-life care.

I wanted to start the conversation with Americans’ attitudes towards death. There’s a lot of uncertainty at the end of life. How do you all approach end-of-life care in your various roles?

Berlin: You used the word “uncertainty,” and from the standpoint of chaplaincy, one of the roles that I’ve tried to play is encouraging people to exercise their sense of choice. People who are at the end of life are juggling so many things. And a lot of that has to do with worrying about their families. If there are pain issues, then it can be really confusing to know where someone is and what their choices are. And yet we also encourage them and their families or their healthcare proxies to make choices that actually really honor quality of life. I think everyone is on board with that in the hospital system, and yet people don’t always know what their choices are, and there may be competing commitments on the part of family and the patient’s wishes. I think helping people sort out the issues, and slowing things down, if that’s possible, to think through what values a person has so that they still have a sense of agency and choice, even at the end of life.

Balboni: I’ll just add to that, from my perspective as a clinician in this setting, that it seems that there’s little language or mode of communication on the part of patients and families. So they get suddenly thrown into this world of facing their own death and have, oftentimes, little preparation, little consideration of that reality. Little reflection on what those values are. They’re coming into the medical system where the clinicians have also no language, for the most part, to be able to even interface with those realities with that patient. We’re very well-versed in the language of the empirical sciences, technology, we’re good with that. We’ve got all those tools in our toolbox, but we have minimal tools, if I’m generous, to really be able to engage on this level of values, of what’s sacred to you of how to approach dying well. But then there’s also the larger realities of our culture, in which, you know, death is hidden from us. Not too long ago, we experienced death in our own homes, and now we’ve entered into a time where death is largely removed. Most people die in institutions. They don’t die in their homes. Fortunately, because of biomedicine we live longer, which is a good thing. We celebrate that. But death will come. As far as I know, no one has avoided it. And yet we’re largely divorced from how to embrace that as families, as communities, in a way that is honoring of both the person who is dying as well as the individuals who are losing a loved one.

Laine Perfas: Yeah, and I do want to talk more about the spiritual component of the conversation, but I think it could be helpful to talk first about our inability to talk about death. I’m curious where you think that comes from when it is such a natural part of the life process.

Balboni: I would say that talking about spirituality and being able to talk about death are intricately intertwined, because you can’t be speaking about these issues with patients unless you yourself have reflected on what that means for your own life, for the life of your loved ones, as well as for the patients in front of you. Because, like the water around the fish, we’re immersed in a culture that so denies death, our value is based on the here and now and our material presence here. And you can see how that concept has infiltrated our psyches and dictates how we approach these issues, both within ourselves and within our care of patients. I think it’s really beginning there, and that has to begin in medical education where we reflect on our own sense of who we are, what’s beyond ourselves when we die, and begin to wrap our minds around what that means for ourselves that we then begin to be able to honor and respect and bring up these issues with patients themselves.

Berlin: Yeah. I think at Harvard Divinity School one of the things that we do there is train our students who are going into chaplaincy not just to provide emotional and spiritual support to patients, families, and staff, but to use themselves as instruments, to Tracy’s point, about doing the work ourselves. One of the courses that I co-teach with my colleague Cheryl Giles is “Compassionate Care of the Dying: Buddhist Trainings and Techniques.” And the first writing assignment for our students is to write your own obituary as if you were dying now. Many of our students are on the younger side, in their 20s and some in their 30s. It’s non-intuitive for them at this point in their lives to be contemplating their own deaths. And yet, the heartiness they bring into this, because we’re helping them process the experience of writing their obituary. And so it’s a process of getting used to it so that we can lean in and we can be present compassionately with someone at the end of life, as opposed to recoil in fear and yet still trying to be helpful, which isn’t helpful, right?

Solomon: I really like that Chris brought in the word “compassion.” And I want to talk about compassion beyond the doors of the hospital, too. I also want to talk about a compassionate society. And the fact that, yes, there are a lot of hard and uncertain decisions that need to be made at the individual level about whether a treatment is in my best interest or comports with my values. But at the same time, we have an aging society with many people who are alone, socially isolated, impoverished. As we have gotten better at managing chronic illness, we have more disability and frailty. The care of somebody frail and old is extraordinarily expensive, if it’s even available. I think it’s been estimated that there are 5 million people with Alzheimer’s, and 15 million people caring for them. Many of those are family members who’ve given up their jobs. Just taking that, where is the compassion in our society to try to support these families and their loved ones? What does a compassionate society owe its most vulnerable people, and what kinds of new financing systems, what kinds of new ways to organize a nursing home, long-term care, how to promote home health aides with a decent living and benefits? All these things are a part of our compassion as a society.

Laine Perfas: Why have we not already begun to invest in some of those things that would actually help end-of-life care for the type of patients you were talking about?

Solomon: We don’t even have universal healthcare in the United States. So our whole framework is highly individualistic, and very limited in the kinds of programs that we support as a nation. If a family is struggling with an elder person, it’s because of them or they didn’t save their money early enough. It’s not seen at a population level as a way that we can all help each other. I think that’s really at the heart of it. Society has put very little into universal healthcare or the social support that people need.

Berlin: The elephant in the room is probably that it’s just not profitable, right? The economics of it, for some reason, are hard to justify. I also feel like, you know, so much of our society is geared toward youth and resources for people who are trying to build lives and such that it can be a hard sell, I think, to invest in aging populations. And that’s a concern. There are other cultures that are taking on the model of the West, North America in particular and in Europe, the more they’re adopting our kind of economic model and the healthcare system, the more we’re starting to see people taken out of the home and into institutions. And then who’s going to pay for it? It’s turning into a global phenomenon as societies prosper, and it’s a huge concern. The world’s population is increasing, not decreasing. There is going to need to be something there for those who can’t afford to live in a really nice senior living facility, with graduated stages of care.

Balboni: You need structures that support these systems and they aren’t present, or the ones that are present are super fragmented and/or are just so expensive, it’s beyond the reach of the vast majority of the population. We do live in a highly individualistic culture, and that’s part of what, Chris, I think you were describing. It’s important to uphold what’s beautiful there; what’s beautiful there is honoring the beauty and uniqueness of each individual person and enabling us to be our own agents. But the potential dark side of that is that it’s to the detriment of whole communities, that you lose community connection. And honestly, that actually ends up harming the individual in the end. In the past we had much stronger structures for communities of meaning that were shared across generations. Largely, these were spiritual communities that performed that function. And we’ve lost that. And if you could imagine, those communities were what took care of the family that had the elderly person who was frail or, you know, you had whole communities that would come around those individuals and also learn about and be sensitized to those needs because they actually have that person in their midst. Those need to be called back. Because we’re by nature communal people, in being just little individuals isolated and just on social media, I don’t think that’s who we are as human beings. We need each other. We need those presences and structures to be able to really be places that honor even our most vulnerable.

Laine Perfas: It sounds like all of you embrace the spiritual aspect of end-of-life care in your work. How is that a different mindset than a traditional medical approach?

Berlin: Part of it perhaps is how we see the patient. We look through our various lenses as providers. If I were a, let’s say, medical doctor going in to visit a patient, I would probably focus more on their condition, how they’re doing today, and so on. As a chaplain, when I enter a room, I’m going in really attending to the experience that the person is having. I have that luxury as a chaplain, and it feels like a privilege, to enter in if somebody wants to talk to me. Because they don’t always want to and I take no offense to that. I get it. But if I’m able to create a space where I can just check in, get to know them, we don’t have to talk about religion, but I’m wanting to learn about you and what are your values? What makes you feel alive, spiritually alive? And how is your connection to that going? Part of the healing that we seek to foster in others, it’s not physical healing, obviously. But it’s really that inner healing of soul, spirit, mind. What is left unnamed that may be naming it, they might feel a sense of companionship. In Buddhism, we have this term Kalyāṇamitra, which literally means spiritual companion. It’s like a friend on the path. And I love that. That is how I think of spiritual care.

Balboni: I loved hearing that description, Chris, and I love the fact that you create this space, and I would say that for clinicians, this idea of creating space is really a key one. I think there’s a tendency to think that I have to be trained as a chaplain to provide spiritual care, as a physician or nurse, but really it’s all about creating space.

I remember one patient I cared for from the time of her initial diagnosis to the time when she passed away, a wonderful woman, actually an energy healer. I had asked her about her spiritual history, and it’s interesting because my having just asked one little question, she said, “That’s an OK thing for you to talk to me about.” We had multiple conversations, and I remember one time being in the hospital and seeing her because she was admitted because of her metastatic cancer and was getting near the end of life. She hated coming into the hospital and she said to me, “I feel like all my energy is sapped out of me when I come into this place because it feels like this place is screaming at me: All I am is a body full of tumors that are killing me.” And I felt like she was naming what we’re talking about. “All I am is a body full of tumors that are killing me.” No one’s seeing who she is. It was that I had opened this space for her to be able to express some of these experiences that she was having that allowed those subsequent conversations. But it was such a small investment on my part, one question, and that allowed for a spiritual care trajectory for her whole care. And ultimately, she actually went into hospice care in the end. Of course, when she was in hospice, I visited her in hospice and she said to me, “Why can’t all of medicine be like this?” Because it is integrated in hospice. That’s the model in hospice. I think one common misperception is that spiritual care on the part of nonprofessional spiritual care providers is it’s going to be some huge thing that’s going to take all your time and require you to go beyond professional boundaries. No, no, no. It’s patient-centered. It’s simple questions. It’s opening a door. It’s creating a space that says, “I see this aspect of you. It’s OK for you to raise this as part of your care.”

Solomon: Obviously you guys are special and the people who’ve gotten the special training are extraordinary. But the fact is that very few people have access to this exquisite care. In my view, one of the reasons, it’s a really big reason, is how specialized modern medicine is. And so the nephrologist sees you about your kidneys and the cardiologist sees you about your heart and they all come in at separate times. I’ve done a lot of research on this. Even in the very best hospitals no one’s taking responsibility for helping the patient navigate what’s in their best interest. They might think that each of the things that each specialist is recommending is going to be a fix for their longer-term problem, when in fact most of the time what’s being offered for somebody who’s really terminally ill is probably not going to change the outcome. But how do we break the cycle, in terms of systems thinking, how can we change ourselves?

Balboni: Millie, what you’re naming is, I mean, I function in that system. I’m highly specialized. You know, in the past, we had one person that did everything. It’s just not feasible anymore. Some of it is just the practical reality of the complexity of medicine and of various techniques and technologies and all this sort of thing, which are, in and of themselves, so good, beautiful and good. But you’re right that it creates these silos of specialties and these poor patients and families are lost between them and they’re not necessarily communicating with each other, I think. How to actually begin to build bridges? There’s much thought that needs to go into that. And I can see even in my own practice, some examples of how this has worked, like creating early, these little communities of clinicians that are helping carry patients and families. And within my own world, we take care of a lot of patients with metastatic cancer. They’re usually admitted to the hospital. They usually have to get seen right away. It’s often an urgent setting. Recognizing that these were the patients with the greatest need for complex care coordination, for communication with their medical oncologist, with their primary care physician, we created a team-based structure with representatives from those groups in order to care for those patients. That’s one small example. I think there’s an increasing recognition that it’s just not feasible for one person to do it. It has to be a team approach, but you need structures that enable it.

Solomon: The insightful CEO out there who’s listening to us might want to develop some pilot examples because that’s what we need. We need integrative team-oriented care and we need some triggers for when such team care is especially important, in my view anyway. Certain kinds of diagnoses should automatically trigger some sort of, “Let’s try to together figure out how we’re going to guide this patient.” Because when we just ask them, “What do you want to do?,” that’s an irresponsible interpretation of autonomy.

Berlin: It needs to be an informed thing. Everyone has a right to all the information. I also think that how medical students are trained really can make a difference, and it can start right then and there in the training process. One of our courses taught by Gloria White-Hammond at Harvard Divinity School is a joint HDS and HMS, Harvard Medical School, course that’s very popular and our Divinity School students will go over to the Medical School and they’re in a class with medical students and they’re all having conversations together. That’s a really generative environment to see, oh, how might we conceive of the terrain that we’re all working in together as collaborative. So part of it, I think one of the solutions to the siloing of our work is conversation, is awareness, advocacy, and mutuality, interdisciplinary talks. I think there are a lot of creative ways to do this, and that allows for more diverse voices to be heard.

Laine Perfas: When you look at different settings like clinical, educational, where are you most encouraged by steps that are being taken to address some of the shortcomings we’ve talked about?

Berlin: I think one of the benefits to having an institution, especially like the Harvard medical system, is that we actually have a team where at least the goals are that of being an ecology of care. There are social workers on call. There are chaplains on call. There are palliative care specialists. The resources are there and we talk to each other, ideally. We can read each other’s medical records. Not a lot of people know that, but chaplains also write in progress notes. And that was something that I think, I’m glad, Tracy, you brought up that bit about the cultural shift in the last couple of hundred years, because if you consider who was in the home as somebody was dying, usually it was a clergyperson who was available in the community, as well as the kids, the grandkids, the siblings, cousins. You had this very sort of holistic way of dying in which it wasn’t denied this was a part of life.

Solomon: Sam, one of the success stories of the last 15 years has been the establishment of palliative medicine. I think Tracy is a perfect example of that and with the growth of palliative medicine, a real commitment to the team that Chris just described.

Laine Perfas: For those who aren’t familiar, can we define palliative care?

Balboni: So palliative care is a specialty within medicine that focuses on supporting patients and families, through both curative and non-curative treatments. I think one frequent misunderstanding of palliative care is that it’s only at the very end of life. No, it is throughout the continuum of care, particularly in chronic and serious illnesses. And it’s all about upholding the quality of life with a biopsychosocial spiritual model, for both patients and their families.

Solomon: And sometimes that means guiding people to take very quote-unquote “high-tech” interventions because they improve quality of life and reduce suffering. Sometimes it’s to help people say no to treatments that are not going to be effective, that experts think are just going to create burdensomeness that is unnecessary and harmful. So that is one of the big positive stories of what’s happened in, I don’t know, about the last 15 years or so. The growth of palliative medicine as a subspecialty of medicine, with people like Tracy and others who have training that didn’t exist 20, 25 years ago.

Laine Perfas: Thinking about everything that we’ve talked about, there might be people listening to this episode who are either going through their own end-of-life care or have loved ones who are reaching that stage in their own lives. Do you have any thoughts you’d want to share with them about how to navigate this space or how to think about it more holistically? I have a very mundane suggestion, but I think it could be powerful. Since doctors’ language often obscures the fact that somebody is in their final phase of life, I think family members can actually open the conversation and put doctors at ease. Things like, let your doctor know that you think maybe this is a final period of your life and that you would like their help in understanding what’s lying ahead. They don’t have a crystal ball. But they do have enough experience to know that this could go this way and it might be like this, or it could go this way and it might be like that. And these are some of the things you might want to think about as you’re figuring out how you want to live your life to its fullest in the time that you have remaining.

Balboni: Actually, Millie, I would just echo much of what you’ve said and just say that it’s feeling free to be asking those questions and also to be asking them over and over again. Because there are always uncertainties, but things become clearer over time. The clinicians have more information. It’s helpful to hear from differing clinicians’ perspectives, from the nurse, for example, sometimes the nurse knows better than the doctors do, particularly those most involved in bedside care can sometimes be the most aware of really what’s going on with the person. I think it’s also helpful for patients and families because understanding these things is not something that’s a one-time deal. Our minds cannot take in this information at one time and just be done. Your mind and heart cannot integrate that information quickly. It’s something that you actually need time and processing and multiple conversations. Clinicians should be doing that. They should be having those conversations over time, but also patients and families can ask for that.

Berlin: As a chaplain, I have so many things that I would want to say to someone who is in this part of their lives, but just a few things I think that maybe are helpful. First of all, one of the questions that has always impacted me is, where is the effort? Where is the effort in what you might be struggling with? So, for example, I had a patient, we’ll call her Mary, who was putting so much effort into making sure everyone in the family would be OK, to the point where she was exhausting herself with concern. As a mother, she had a 12-year-old daughter that she was worried about. And for me, the role was just to say, she will figure it out. Trust the resilience of your daughter, of your husband, of the people who love you, that they will have what they need and she will have what she needs as she grows older. Also, grieving together. Grieving with your loved ones is OK so that people aren’t grieving by themselves. You can share the experience of anticipating the goodbyes. In hospice, there are four things that are often helpful, I think, in reconciling family members who maybe have unresolved issues. And the first is to communicate “I love you.” The second is to convey gratitude, “Thank you.” And then the third and fourth, “I forgive you,” and “Do you forgive me?” This can go such a long way.

And, the last thing is allowing the death experience to be also a process of discovery. The great Joan Halifax, who wrote a wonderful book called “Being with Dying,” It’s a Buddhist approach to how to be with people who are at the end of life. It’s a deep spring and we can’t know what it’s like. Just allow it to be whatever it will be. It will not be what your worst fears tell you it will be, most likely. I also believe that dying itself is not the hard part, but it’s struggling to keep living, and that’s where a lot of the pain is. And the body does this too. The body does everything it can to keep going until it can’t anymore. And maybe that’s the hard part. The Carlos Castañeda story of “Don Juan” encourages all of us to take death as an adviser. And that always stuck with me. Just let that really impact the time you have left to make your life meaningful and not fearful. Recognize how precious and open the present moment is to be able to experience life along the way.

Laine Perfas: Thank you all for joining me today and having this really great conversation.

Berlin: Thank you.

Balboni: Thank you. Wonderful to be with you all.

Solomon: Take care.

Laine Perfas: Thanks for listening. For a transcript of this episode and all of our other episodes, visit harvard.edu/thinking. And if you found this conversation helpful, share it with a friend. This episode was hosted and produced by me, Samantha Laine Perfas. It was edited by Ryan Mulcahy, Paul Makishima, and Simona Covel, with additional production support from Christy DeSmith. Original music and sound designed by Noel Flatt. Produced by Harvard University.