EP. 2: WITH PATIENTS UNTIL THE END

WITH MIMI DUNNE

Mar 8

WITH MIMI DUNNE, MD

What can we learn from patients nearing the end of life?

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Episode Summary

One aspect of the medical profession that doesn’t often garner a great deal of public attention is that of caring for patients who are dying. For Dr. Mimi Dunne, the relief of suffering has been a real life’s calling, and specifically the mission of relieving mental and social suffering in the lives of terminal patients, helping them and their families find solace and meaning as they face mortality. This week, we ask Dr. Dunne to share insights and lessons from her experience in palliative care.

Dr. Mimi Dunne is a pioneer in palliative medicine and end-of-life care in New York State who is engaged in innovation to address suffering and improve the care of the dying. A graduate of Saint Louis University School of Medicine, Mimi completed her post-graduate education at the University of Chicago and trained in Mindfulness-based Stress Reduction at the University of Massachusetts. She is board certified in emergency medicine and hospice and palliative medicine.
As Medical Director of Hudson Valley Hospice, Mimi founded the region’s first palliative care program. She has authored numerous articles and book chapters on Emergency Medicine, Palliative Medicine, and Global Health, and is an advisor to the African Center for Research in End of Life Care (Rwanda) and Bulamu Health Care (Uganda). Most recently, Mimi was a fellow at Stanford University’s Distinguished Careers Institute, during which time she taught a course at the medical school on palliative care.
In this episode, you will hear about:
• What palliative care entails and what kinds of physicians specialize in it - 02:06
• Dr. Dunne’s path from emergency care to palliative medicine - 3:36
• Common misconceptions about palliative care - 7:43
• Stories of a pivotal patient case that illuminates Dr. Dunne’s career - 11:33
• What it is like to accompany patients at their end of life - 15:59
• A discussion of Narrative Medicine and storytelling - 23:44
• A discussion of the Top Five Regrets of the Dying by Bronnie Ware - 29:29
Henry Bair: Hi, I'm Henry Bair

Tyler Johnson: And I'm Tyler Johnson,

Henry Bair: And you're listening to the Doctors Art, a podcast that explores meaning in medicine throughout our medical training and career. We have pondered what makes medicine meaningful. Can a stronger understanding of this meaning create better doctors? How can we build health care institutions that nurture the doctor-patient connection? What can we learn about the human condition from accompanying our patients in times of suffering,

Tyler Johnson: In seeking answers to these questions? We meet with deep thinkers working across health care, from doctors and nurses to patients and health care executives, those who have collected a career's worth of hard earned wisdom probing the moral heart that beats at the core of medicine. We will hear stories that are by turns heartbreaking, amusing, inspiring, challenging and enlightening. We welcome anyone curious about why doctors do what they do. Join us as we think out loud about what illness and healing can teach us about some of life's biggest questions.

Henry Bair: Our guest on today's episode is Dr. Mimi Dunne, a pioneer in palliative medicine and end of life care in New York state, who's engaged in innovation to address suffering and improve the care of the dying. A graduate of St. Louis University School of Medicine, Mimi completed her postgraduate education at the University of Chicago and trained in mindfulness based stress reduction at the University of Massachusetts. She's board certified in emergency medicine as well as hospice and palliative medicine. As medical director of Hudson Valley Hospice, Mimi founded the region's first palliative care program, Mimi has authored numerous articles and book chapters on emergency medicine, palliative medicine and global health, and is an advisor to the African Center for Research in end of Life Care in Rwanda and bilateral health care in Uganda. Most recently, Mimi was a fellow at Stanford University's Distinguished Careers Institute, during which time she taught a course at the medical school on palliative care. Welcome to the program, Mimi, and thanks for being here.

Mimi Dunne: Thank you. Henry and Tyler are so nice to be with you.

Henry Bair: Many of our listeners may not be quite familiar with what palliative care is or looks like in your words and in your own experience. What is palliative care and what does it look like?

Mimi Dunne: Well, palliative care is a medical subspecialty of 10 medical specialties from anesthesiology to surgery. My background is emergency medicine. I would say most people come from a background of internal medicine or family medicine, but it also includes obstetrics and gynecology, pediatrics, physical medicine and rehab, psychiatry and neurology and radiology. If you think of it, many of those specialties have the commonality of either intense symptom management or oncology patients. So palliative care is specialized medical care for people living with a serious illness. It focuses on providing relief from symptoms and the stress of illness for both patients and families with the goal of improving quality of life. And it's appropriate for patients at any age, at any stage of illness. And I will advise our listeners that they can go to the website, www.getpalliativecare.org for more information.

Henry Bair: Can you briefly tell us your path from emergency medicine to palliative medicine?

Mimi Dunne: Sure. After residency, I trained at the University of Chicago Emergency Medicine Program, and I stayed in Chicago at another residency program as faculty for a year. Then my husband, who is also an emergency physician, Jack, was recruited to New York's Hudson Valley midway between New York City and Albany to take over an emergency department contract. In those days, the pendulum has swung toward outsourcing hospital based physician services, and he built a business providing physician services to hospitals. And I was one of his physicians, so we moved to New York. And during that time, probably about 10 years after residency, we had a dear friend who was dying of prostate cancer, and he asked us to help care for him, which was my introduction to hospice. And after our friend's death, I completed the hospice volunteer training and wound up becoming the hospice medical director when the position opened. This was in the late 1990s before hospice and palliative medicine was an American board of medical certified subspecialty. At the time, the American Academy of Hospice and Palliative Medicine did provide a certification of its own, and they had an excellent, self-paced CME curriculum. The National Hospice community was also very supportive and generous, so it was a position I was self-educated for, and it goes without saying that I learned a huge amount from my nursing and social work colleagues. It was very, very different from the emergency department because I saw patients at home, which was a much richer and a new perspective for me. I also had to learn a different sort of pain management than we used in emergency medicine. So the learning curve was pretty steep, but the work felt very meaningful.

Henry Bair: So you were able to identify a gap in palliative care in your region. What made you decide to take a leadership role and fill that need?

Mimi Dunne: Well, the gap and the need had been identified by our local hospitals, nursing and case management staff. They wanted to improve patient and family care around end of life. And as the local hospice medical director, I was invited to join the multidisciplinary task force and we soon recognized and became part of this national palliative care movement, which at that time had been catalyzed by really robust philanthropic support and public policy development. For example, the Center to Advance Palliative Care had just been founded, funded by Robert Wood Johnson Foundation, and our team was able to go to New York City to Mount Sinai Medical Center, where the CAPC was initially located and sit in on Diane Meyer's team meetings. We had the privilege of being mentored very directly. Diane Meier is an internist injury attrition who has been one of the national champions in palliative medicine for the last 30 years, and she was the founding director of the Center to Advance Palliative Care, which I would say itself has advocated for and driven the increase in palliative care availability nationally. They publish a scorecard every year about palliative care availability in your state. They have a lot of continuing education on their website. They do direct mentoring and highlight exemplary programs in palliative care across the country.

Henry Bair: I think that's a really important point to emphasize. I think that one of the more widespread misconceptions about palliative care is that it is only for the end of life, or that it is only for patients who have terminal illnesses.

Mimi Dunne: Absolutely. I mean, we have heard repeatedly and less frequently, fortunately, over the years that a patient is, "not ready" for palliative care because people in general and medical staff members physicians conflate it with hospice, which by most insurers definition is end of life care. But hospice is palliative care for the end of life. The trend in the last 15 to 20 years has been to introduce palliative care as early in the course of serious illness as possible.

Tyler Johnson: Mimi, one one thing that I'm curious about. I've thought a lot about the fact that I think a lot of us when we're growing up, at least if we grew up in the States, come to have this idea of a doctor that a doctor is a place where you go to get fixed from what's wrong? Right. So the maybe primordial image is, is your mom putting a Band-Aid on your knee when you scrape your knee? Then you get strep throat and you go to the doctor and they give you antibiotics and it makes you better. And of all of the kinds of doctors, you can make an argument that an emergency room doctor is sort of the pinnacle of that mentality, right? Because many people go into the emergency department, whatever is wrong, the emergency department doctor stitches up their laceration or gets them off to the surgery that they need for their appendicitis or whatever it is. They figure out the problem and figure out a way to fix it. And I'm struck by the fact that you sort of went from the place where you do the most fixing of problems to a place where, at least on the surface, it would probably appear to many people that you don't fix any of the problems, right? Most of what the palliative care doctors do appears not to "fix" things right. It's more of a sort of a being in the problem with the patient and starting from there rather than fixing it and sending the patient on their way. I'm just curious how that transition was because it strikes me as something that seems to me like it might have been a pretty dramatic change.

Mimi Dunne: I think I chose emergency medicine training because I wanted to be confident that I could manage anything, whatever rolled in the door or at least the first 30 minutes of anything, as you know, emergency medicine selects for a certain type impatient, action oriented, drawn to variety, unpredictability and rapid diagnostic processing. But I also loved all the human encounters, all the stories, and I wanted to create the best possible patient experiences. I was very intentional in dealing with death in the emergency department, especially communicating with families. And I did the best I could with the time I could make, but I think I had a sense of wanting more. And I've had a handful of lightning bolt experiences in my career, and one of them was watching a Bill Moyers PBS series called Healing in the Mind in the mid-1990s. It made me realize that I felt called to the relief of suffering, but I didn't have the knowledge or skills to do that optimally. That led me to train in mindfulness based stress reduction at the University of Massachusetts in Worcester. And I think it set the stage for my involvement in hospice.

Henry Bair: Is there a patient that comes to your mind as someone who fundamentally transformed your relationship to medicine, perhaps a pivotal moment that made you realize that your chosen path -a combination of emergency and palliative medicine - was the most meaningful work that you could do?

Mimi Dunne: Gosh, there are so many stories, and I can say I wish that I kept more notes along the way as I forgotten a lot of details. I remember one of our early palliative care consultations. We were a hospital based program to start. The patient was a man in his mid to late fifties, who I recall had been admitted with hypercalcemia. This was in late May or June. His wife was a nurse, she was a lactation consultant. So her work was quite far from serious illness. The couple had just been to a family college graduation out of town a few days before, and the patient had had trouble navigating the steps in the stadium and seemed slow down in general. So they went to see his primary care physician did. Some lab found the elevated calcium. He was referred to the hospital. The patient's wife, the nurse, was furious at him, furious as if he were choosing to be difficult. On my evaluation, he was rather apathetic and difficult to engage, had nothing focal neurologically. But I came away with a gut feeling that he probably had a malignancy with brain involvement, which proved to be true, and his wife was devastated. Even more angry. Guilty. Grieving. Distraught, really? In crisis. The patient remained mildly encephalopathy even after his hypercalcemia was corrected, so it was difficult to engage him in goals of care planning advance directive discussion. The couple had several children, teenagers and young adults, including a daughter who was planning a wedding for the holidays in about six months.

Mimi Dunne: We had a series of family meetings to allow the wife and the children with the patient present, but as I said, he wasn't very engaged to allow them to process in and plan I with my faulty memory. I think he may have had non-small cell lung cancer with brain mets and. He probably had whole brain radiation. He was discharged to home on hospice. They pulled it together to have the wedding at home two weeks later just before he became bedridden. And he survived only another week or so. It was very affirming at that time, it seemed clear to me that the intensive family work and support we did with our nurse and nursing and social work colleagues and spiritual care colleagues allowed the family, the wife, especially to reach some acceptance and make a transition in priorities and without our palliative care presence, that wouldn't have happened, and it wasn't our special skills, it was that no one else had the time or perhaps the vision of what was possible and the family would have been alone felt abandoned, frightened in chaos and hospice perhaps would have done some damage control and provided bereavement services. So it's important to point out that 20 years later, we're in a very different era of oncology. Certainly the most hopeful of my career beyond my imagining and moving from hospice, that quickly seems unusual from today's perspective. But at that time, metastatic lung cancer with brain involvement had a very, very poor prognosis.

Henry Bair: That's a really powerful story. In in palliative care and especially in hospice. You often accompany patients until the time they die. That is a striking notion for me and most likely for most of our listeners, we it just we don't do that on a regular basis. We tend to keep the thought of death at bay. Can you tell us more what it's like to accompany patients at the very end of life?

Mimi Dunne: Well, I agree with you that we are a death-avoiding society and modern medicine is a death-avoiding culture. I've seen improvement in that during my career, but death-avoidance is a relatively recent phenomenon in human history, really just starting in the mid 20th century with the burgeoning of modern medicine, with the antibiotic era. And understandably, we each regard our own mortality with cognitive dissonance. It just seems impossible to imagine I would assert that. For those of us privileged to survive into maturity, we have greater longevity in the last generation or two, the inevitability of death really gives meaning to life and, while while a mystery it always has. So I'll cite two other sort of lightning bolt moments that inform my understanding of palliative care work. First is Laura Carstensen, who's the director of the Stanford Center on Longevity. Dr. Carstensen articulated the theory of socio-emotional selectivity. Which is a mouthful. Based on her extensive research, Carstensen essentially demonstrated that when we recognize we don't have all the time in the world, we see our priorities most clearly.

Mimi Dunne: The second and related in the tradition of developmental psychology of young and Erikson, Ira Byock, physician now in California, articulated the what he calls the Developmental Tasks of the End of Life. And they include completing worldly affairs, completing relationships in the community, completing our relationships with our inner circle, achieving a sense of meaning in life, experiencing forgiveness. Giving forgiveness his his work can be found at IRAByock.Org, and he has published a number of books. Those tasks can't be completed in a couple of hours or in a weekend. And to me, the implications for medicine are clear, because if you don't know that your time is short. Most people don't know to do the work. And it's central to dying well for both patients and families who carry that experience into the future. So as health care providers, we owe patients the truth. Delivered in a compassionate and culturally sensitive framework, and though our prognostic science is imperfect, we owe patients and families our best efforts at prognostication. This gives them the opportunity to make a lot of meaning at the end of life and to help heal relationships, to make amends, to make sense, to to be at peace.

Henry Bair: I imagine that as a palliative care doctor who is present with the patient while they're grappling with these tasks, you often help facilitate that in some way help guide them through their process.

Mimi Dunne: Well, let me be clear. Sometimes in dealing with symptom management at the end of life and we talk, you know, morphine is one of our key tools and we have to make it clear to both patients and families that we're not talking about hastening death or shortening life. But yes, I think people need to know what to expect. So I will share my best intuition about what to expect. Acknowledging that I may be wrong as we often are in prognosis, and I believe it's important to commit to each patient, patient and family with with confidence that we will take best possible care of him or her, or help put best possible care in place. And in my experience, people die as they live. We need to know them personally and know what they want, know their values and goals, hopes and fears so we can address those and not make presumptions. And I think all of that contributes to - I don't know if there's such a thing as a good death that could be debated, but I think there's a better death and a worse death and better is infinitely preferable to worse. Now we can ask, "what do most Americans want?" They want to avoid physical suffering. They want to avoid prolonging the dying process. They want to avoid burdening their families. They want realistic, truthful information. They want to maintain a sense of control and of hope. And they want to die at home. If we can find out where our patients are with their wishes and preferences we can work to help make that happen.

Henry Bair: The elements that you mentioned that people want for their end of life - Do you see that often playing out in practice when you are actually with patients who are in their last moments, the last few days? Are what you listed, those survey results are they are they actually the the themes that you've seen over and over again that help patients die better?

Mimi Dunne: Well, I will say that we noted I believe it was in 2020, that was the first time in the United States that more adults died in their place of residence, which includes nursing homes than in a hospital. So that is a change. And I would say I see a pre-selected population as a consultant. But yes, I think those things are achievable. And I think it's important to keep in mind that our first priority is symptom management and that if if we can liberate people from physical pain, which which we can in the vast majority of cases without undue sedation, it liberates them to do that work, to explore spiritual issues, to resolve social issues. So I'm very optimistic about the end of life.

Henry Bair: Optimistic about the end of life.

Mimi Dunne: I'm optimistic about peace and possibility at the end of life.

Henry Bair: Wonderful sentiment pivoting slightly. You mentioned stories several times already. I know that you are interested in narrative medicine. Can you develop that a little bit more? What is narrative medicine and in what ways can storytelling help both clinicians and patients?

Mimi Dunne: Well, I'll definitely endorse Dr Rita Charon's 2006 book On Narrative Medicine, which is a very rich and rewarding text, and she's at Columbia University, where they have a master's program in narrative medicine. But I'll share a much simpler example of the power of story. I will say that narrative medicine is not only about patient stories and patient journeys, but it's about our journeys and stories as health care providers as well know mining those for the rich lessons we can learn. But a simple example when I was starting an outpatient palliative care practice in our Hospitals Cancer Center, I was driving and heard someone talking about life story conversations on a business management podcast. So I thought, this is a lightning bolt moment for me. I incorporated asking my new patients who had been referred to the palliative care office -unless they had acute symptom management issues that we would prioritize dealing with first- I told them that it would be very helpful if they would tell me their life story in five minutes that they could take two minutes or 15 minutes, that I had lots of information about their illness, but very little information about them and to start with where they were born. Now I was interested in that personal story and I wanted to put the person not the illness at the center of our interaction. And I wanted to establish trust. I found that I could infer their values and goals from their stories. But the experience proved to be so much more. It took me by surprise. Both a patient and I or the patient family and I because there would often be a spouse, sometimes children, we were all elevated by this process. Now this wasn't really storytelling, it wasn't a performance. No one expected to be asked for their life story. It was a very simple exercise, but I learned that we are always prepared to tell our story because we've been telling it to ourselves throughout our lives. Starting in adolescence. In exploring this I learned about the work of Professor Dan McAdams of Northwestern University, who has studied life stories for decades. He's an expert on what he calls narrative identity, which he describes as an internalized story we create about ourselves. It's not an exhaustive biography, but sort of a parallel about who we are, where we came from, how we got this way and what it all means. We make in doing this what McAdams called 'narrative choices' and most people tell what he calls 'redemptive stories' about their pasts, transitioning from bad to good, overcoming a challenge, going from suffering to salvation. With a negative experience, followed by a positive experience that resulted from the negative experience and gave it meaning. So our life stories that we cultivate. Become psychological resources, we use them to help us make decisions and move forward in life. So telling our stories affirms our values, increases our resilience and fosters a sense of hope and peace of mind because it reminds us of our strengths. And that's the transcendent thing I was experiencing with patients and families in this little exercise that far exceeded my expectations. And I must say I wish, I wish that I had kept more notes about patients and stories just to help me remember them all. So I encourage listeners, especially medical students, to cultivate the habit of making short -HIPA-compliant, of course- memory prompting notes about their clinical experiences made them more of a sketchbook than a formal journal.

Henry Bair: You work with patients who, I would assume they are most likely aware they are dying, that awareness is what drives many of them to seek ways to tell their story to the people you love that they love. And as you've mentioned already, what insights become apparent to people about their life stories at the end of their lives that may not have been apparent at an earlier time?

Mimi Dunne: Well, I'll hearken back to the work of Carstensen, which is that when your time horizon is short, you have a new clarity about what matters most. In particular, if there's an opportunity for healing, for forgiveness, of self and of others. And for reaching a sense of resolution, of completing the arc of an individual story, of making sense of a life that I repeatedly see people moving toward that.

Henry Bair: As a palliative care doctor, you have access to the inner lives of many patients as they approach death. Are there insights you can share with our listeners about things you have learned through this process? Lessons you wish you knew when you were younger or things that would be helpful to our listeners.

Mimi Dunne: Well, first, I'd like to give a shout out to any medical students listening. They often feel like the lowest person in the food chain, but they're often the ones who spend the most time with patients and they may, because of that, become the most trusted person on the team. Sometimes it's a medical student who asks enough questions to find the key that unlocks a clinical puzzle. So I would say keep the faith. And I'll offer a quote that's attributed to Plato and various others, which is "be kind, for everyone you meet is carrying a great burden." And I had to follow the golden rule to treat others as you'd like to be treated or as you'd like your mother or sister or brother to be treated, and you'll never go wrong. And as for lessons from patients, I can paraphrase the top five regrets of the dying, which is a book by a hospice nurse. I think her name is Bronnie Ware. First to live your own life, not the life that others expect of you. Second, don't work too much or too hard. Three, express your feelings. Four, stay in touch with friends and loved ones. And five, give yourself permission to be happy. We know intellectually that life can change in an instant. And I think that can help us be grateful for each ordinary day.

Henry Bair: Can you elaborate a little bit on the last point, giving yourself permission to be happy in your experience? Have you met with patients who who have taught you what that means?

Mimi Dunne: In my experience, to let yourself be happy is related to patients will say, "I regret that I didn't allow myself to be happy" which also means "I was living the life I was told I should should live. And I was not being my authentic self." I think we're all challenged to accept ourselves, and if we get a lot of messages from, say, our family of origin or society that they would prefer that we be something else, that we have to struggle with that, but I think we should trust ourselves to grow in the direction of our our hearts and souls. And if we do, we are more likely to have a life that's filled with meaning. You know, I just reviewed a lot of the popular psychological literature for doing a talk for the Distinguished Career Institute fellows, and the transition seems to have been from Happiness in maybe the 2010 to Meaning. And when we say, let yourself be happy, it's not happy. Go lucky. I think it's more. Allow yourself to be content satisfied, achieve a sense of meaning.

Henry Bair: That's really wonderful. Thank you very much, Mimi, for your time for your wisdom and insights from your years of practice and leadership in palliative medicine.

Mimi Dunne: Well, thank you, Henry. What a privilege to be with you.

Henry Bair: Thank you for joining our conversation on this week's episode of The Doctors Art. You can find program notes and transcripts of all episodes at the Doctors Art. If you enjoyed that episode, please subscribe rate and review our show available for free on Spotify, Apple Podcasts or wherever you get your podcasts.

Tyler Johnson: We also encourage you to share the podcast with any friends or colleagues who you think might enjoy the program. And if you know of a doctor, patient or anyone working in health care who would love to explore meaning in medicine with us on the show. Feel free to leave a suggestion in the comments.

Henry Bair: I'm Henry Bair

Tyler Johnson: And I'm Tyler Johnson. We hope you can join us next time. Until then, be well.