Inspired To Heal
Stories of clinicians, educators, innovators, and researchers who built or led programs of excellence in government health institutions. Each guest has excelled in clinical medicine, program building, or public health. They persevered and succeeded through a clear vision, collaboration, and a passion for the mission of government-run health systems. Their stories will inspire those seeking change in their own organizations.
Inspired To Heal
Creating a Palliative Care Program
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Dr. Cathy Deamant was drawn to the mission of Cook County Hospital as a medical student and during her residency training. After providing care as a general internist and caring for patients hospitalized with HIV/AIDS, she was motivated to improve the care of patients with terminal illnesses. This included hospice care for dying patients, and when requested, facilitating a return to their country of origin for immigrant patients at the end of their life. She built a nationally recognized program. Commentary is provided by Dr. Josh Baru.
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Welcome to Inspired to Heal, where I interview innovators, educators, clinicians, and leaders in government-run health institutions. Season one focuses on former staff at Cook County Hospital, Chicago's SafetyNet Health System. I'm Bill Trick, and today on Inspired to Heal, I am honored to welcome Dr. Kathy Diamond. When taking care of patients at Cook County Health, unfortunately I spent many hours working with Kathy. I say unfortunately because Kathy is a palliative care physician, which means that I usually needed her help when patients weren't doing well. It is difficult to imagine comprehensively caring for patients without the expertise of Kathy and her colleagues. Kathy founded the palliative care program at Cook County Health, and her program received the Hastings Center Award for creating a nationally recognized program that delivered state-of-the-art care in a safety net hospital. Welcome, Kathy, and great to have you on the show.
SPEAKER_05I'm really glad to be here with you, Bill.
SPEAKER_02Many people, including myself, didn't or don't have a clear understanding of what a palliative care service does. So what is palliative care?
SPEAKER_05Palliative care involves a team because we're seeing people who have very serious illness, not just the person with the illness, but also their families. We're really trying to help people at any point on their illness journey. Sometimes we are seeing people at the beginning of their diagnosis, they may have a lot of symptoms, and so we address physical concerns, but also people are dealing emotionally, psychologically, spiritually, and even practically. How am I going to live with this illness? And so we're working with patients and their families to address those needs and really trying to help them with their quality of life. Sometimes people go on to be cured from their illness and palliative care is with them during the journey. Others, though, the illness is something that affects them over years. So we can see people for years, not only in the hospital, but in the clinic or at home. It requires a team because there's the medical aspects that are either by the physician or the advanced practice practitioner, nurses, nurse practitioners, physician assistants. Also, though, part of the team includes social workers, chaplains because there's spiritual concerns, bereavement counselors, really a whole team approach for people.
SPEAKER_02So it differs some ways from what we do in a typical hospital patient, which is focusing on their medical care. We should maybe be focusing on other things, but in palliative care upfront, you have involvement with disciplines and individuals who can attend to needs that go beyond medical needs.
SPEAKER_05A perfect example of what we would call whole person care.
SPEAKER_02How did the practice of palliative care differ at a government-run safety net healthcare institution like Cook County compared to other healthcare institutions?
SPEAKER_05From the beginning, what we noticed was how many people we were seeing who were so young being diagnosed with an advanced or serious illness at the time even that we were meeting them. The average age of the people we see was 58. That's a difference that a safety net has than other institutions where they may be seeing people with serious illness, but they're in their late 60s, 70s, 80s, 90s. Also, people who are either uninsured or underinsured. So figuring out how to support them when there's limited resources. Because they are young, we are often seeing people who may be parents and have young children, or working is critical to just be able to take care of day-to-day needs.
SPEAKER_02When you had young patients, how did that affect the dynamic of your console?
SPEAKER_05When I think about family meetings, particularly with patients who are younger. When we include their parents, a parent is never really prepared for their child being so sick. There's that sense of loss that a parent has when their child is sick, even as a young adult or an adult. Sometimes we had patients whose children were young adults themselves. And the level of responsibility that those 18, 19, 20-year-olds took on because their parent was sick was important for us to attend to and for us to try and support as best we can.
SPEAKER_02Did you feel like that level of responsibility was ramped up because of the socioeconomic status and the challenges with insurance that they had?
SPEAKER_05Yeah. Oftentimes many members of the family were working just to meet the basics of living, rent, food. Sometimes people had to then take care of minor children as part of their responsibilities. That's why it's so important to look at the whole family as a unit of care in these situations.
SPEAKER_02You mentioned that your care was not just in the hospital, but that you would take care of patients for sometimes years, and that care that you gave extended to the home setting. Could you talk about your experience in the home setting?
SPEAKER_05I actually found the home visits were really particularly meaningful. For people to allow us to enter into their home requires a level of trust. This is unique to, I think, safety nets, but particularly county. If I said I'm a county doc and I'd like to come and see you, people trusted to allow us into their home. And then in their home, you really get a an important sense of what their lives are like and what the challenges are. I'm reminded of a woman with breast cancer who allowed me into her home. And she really actually didn't know me prior because she was receiving hospice care but had been referred from the county system. First, she allowed me to enter into her house. And after speaking with her and building trust, she allowed me to take off the bandage that was covering her necrotic breast mass. And I saw both how this must have been very painful for her. And I also witnessed that there were maggots. And what that told me was that even though she was covering it with a bandage, that there were ways that we needed to be able to help her. It was important for me to talk with her about how we could help with that. Being kind and attentive to the fact that she trusted me enough to see that.
SPEAKER_02The support that we take for granted with relatives or family, and sometimes family or relatives who have medical backgrounds often is lacking. People are having to cope with illnesses sometimes without that support.
SPEAKER_05What that woman experienced was the medical system not having a process of support until we were actually in the home. I did not view it as a neglect of herself or her family. So one was to come into that situation without judgment and recognizing people were doing the best they could with what they had and what could I offer them? They can solution to help soak in the dressings and setting up a system for dressing changes, providing the education that was needed, then we were able to help her to resolve that problem.
SPEAKER_02You were a palliative care physician for over a decade. How do you think that experience changed you, both as a physician and as a person?
SPEAKER_05For me, it continually reminds me of slowing down, being in the present moment, seeing what is going on now instead of regretting the past and worrying about the future. Especially because one doesn't know when serious illness will affect one's life. So make the most of where you are today.
SPEAKER_02Sometimes I would have a patient for whom I thought palliative care services would be appropriate. And I think sometimes people confused that recommendation with us giving up on themselves or their loved one. What advice do you have for people who are considering whether a palliative care team should be involved in their care?
SPEAKER_05Our tag phrase is often to say that we're an extra layer of support. This is not about giving up, especially if people are receiving treatment that can affect how they feel uh physically or emotionally. We're trying to address that. Let us work alongside your providers. We're not there to replace them. We're actually also helping them to help you.
SPEAKER_02Sounds like a conversation you've probably had many times.
SPEAKER_05Yes. And across the country, they have the same conversation. It's not unique to a safety net.
SPEAKER_02Aaron Powell You had a remarkable career providing compassionate care to individuals, but you also identified system-level needs and you brought about changes to the system. First, I should say we're lucky to have someone like you at Cook County. I want to hear about the genesis of that career choice.
SPEAKER_05Oh well, thanks. I loved County and still do. So actually, I was going to be a special education teacher. And my mom was a teacher, and she is at that time in the late 70s, she thought there was going to be a glut of teachers. So she was like, you might want to think of a different career.
SPEAKER_02A glut of teachers is going to surprise people to hear today, but interesting.
SPEAKER_05Yeah. So my brother was going to medical school. My sister was going to go to nursing school. So I was like, okay, if I need to think of something else, I'm I was interested still in the helping field. I like science, so I chose medicine. Honestly, my whole family was probably surprised that I chose that.
SPEAKER_02Other than your family, was there anyone who influenced that decision, or was it seeing your siblings in medical or health-related fields?
SPEAKER_05I I think it was seeing them. I actually don't think I thought that deeply about a career choice. I would say, though, I actually did get to continue to be a teacher because at County I was able to be a clinician educator. So I got best of both worlds.
SPEAKER_02Cook County seemed like an excellent fit for you during your career. Why did you choose Cook County?
SPEAKER_05I went to medical school at Rush, which is right next door, but we actually didn't have any rotations there. However, even in medical school, there was a liberal minister, Greg Dell, who focused a lot on commitment to social justice, and he planted the seed with me. And he said, Have you ever thought about county? My residency was at Michael Reese, and I was able to do two rotations as a medicine resident at County, and I just loved it. So when I graduated, I only applied to one job. So if I didn't get the job at County, I don't know what I would have done.
SPEAKER_02You worked at Cook County essentially your entire career, but only the last half was in palliative care. What clinical activities preceded your founding of the palliative care program?
SPEAKER_05I joined the Division of General Medicine. And so I was a primary care physician. I joined the Women and Children's HIV program that Marge Cohen had established and did that for about a decade along with general primary care. As a resident, I also started a clinic for homeless patients in a shelter in Evanston and did that for about 10 years as well. When people were diagnosed with medical conditions or HIV, I cared for them down at County. So that was the intersection of primary care, HIV, and homeless health care before transitioning into palliative care.
SPEAKER_02You joined Cook County prior to Cook County having the Core Center, which is one of, if not the largest, provider of HIV services in the Midwest.
SPEAKER_05I served as an attending physician on the HIV ward in the old hospital. There were a couple of us who were general internists who did that as well as the infectious disease specialists. That was basically a palliative care unit because most of the people were dying. I think that's what led me into palliative care.
SPEAKER_02When you decided to start the palliative care service, was there a specific motivation or was this a gradual realization, one, this is necessary, and two, I think I can get this running?
SPEAKER_05I think the experiences I had caring for patients with HIV and primary care were leading me to this. But actually, Maurice Lemon, who was the residency program director, was pivotal for me. A few years earlier, he had suggested to me that I might do the geriatric boards. And I was like, no, I'm doing other stuff. And so I didn't explore it. Then he came back to me and said, you know, we're really interested in developing curriculum around end-of-life care. And I wonder if you would be interested in doing that. Now, this time I listened to him. And at that point, HIV care was transitioning to people living longer and living well with the illness because of highly active antiretroviral therapy. There wasn't fellowship training back at that time. So for a year, I served as the attending physician for all Cook County hospital patients who were receiving hospice care at home. And I went out and did home visits and worked collaboratively with the hospices.
SPEAKER_02It's noteworthy that at Cook County, the HIV program seemed to come from the General Medicine Division.
SPEAKER_05A lot of startup programs came from the Division of General Medicine just because there was an identified need and people were creative enough to meet that need.
SPEAKER_02How did the palliative care team protect themselves against burnout?
SPEAKER_05What helps a team is the support we try to foster within a team. There is significant attention to talking about difficult cases, sharing experiences, seeing patients together, because these are, you know, stories that are have a lot of challenge. If you can do it together, you're not alone and in isolation in listening to loss and concern.
SPEAKER_02Are there any cases that stood out as particularly challenging or rewarding and fulfilling?
SPEAKER_05Some of the challenging cases occurred around patients who had serious illness who were detainees at the Cook County Jail. We realized that we needed to look at this a little bit differently. Patients would come over and they'd be shackled. And we really needed to work with the CERMAC Health Services to both unshackle patients when they're really closer to the end of life, also expanding visitation or getting compassionate release. A memorable case that we identify a lot of people who want to return to their home country when they find that they're seriously ill. There was one patient that we had to overcome a bunch of challenges in order to get him back because he had a brain injury a couple years before we had seen him, and he was felt to be not decisional at that time and had a guardian. And when he transferred from Oak Forest Hospital, which was our long-term care facility, to us and part of the Cook County system. Part of the Cook County system, yeah. He was having weight loss and was found to have a pancreatic cancer. But then in talking with him, we determined he was decisional and he wanted to return to Poland. So it was complicated because we had to get a court uh date to go before a judge who's the only one who could remove guardianship. We had to reconnect him with his family in Poland and determine that they were able to receive him back. He'd been at Oak Forest for a couple of years, so he needed clothes, you know, a few presents because it was gabart. He was going around Christmas time. And it was amazing because everybody rallied. The nurses, the physicians, the physical therapists, particularly the interpreters. He was able to return and be with his sister for a few weeks before he died. And that was just so powerful to be able to help that happen.
SPEAKER_02I'm sure for every one story, there may be a hundred additional stories that were similar. You've mentioned the care of people who have been arrested and are in detention at the Cook County jail and they become sick, come to Cook County Hospital to get their care. Is there anything that you were able to change to allow them to die in a more humane way and potentially surrounded by people who they loved?
SPEAKER_05It's recognizing things could be different, and you have to oftentimes work with the higher level of administration overseeing the detainees. Like I had they only had visitation on, let's say, Wednesday afternoon, and you can't wait a whole week in order to have a family meeting. So how can we adapt the rules for what's going on in a clinical situation?
SPEAKER_02Were you able to get compassionate release for any of the detainees at the end of their life?
SPEAKER_05We were able to create a process that as soon as we saw that someone was having an advanced serious illness or was terminal to submit the necessary steps to request compassionate release. Having an awareness would be important for people. The other example was people who wanted to return to their home country. My feeling is that if someone is diagnosed with a serious advanced illness and may have come from another country, I asked them very early on, how important is it for you to return to your country while you're still able to? What was really hard and painful was finding out somebody would have wanted to be returned and was already too sick and that was not possible, or that care was continued that made them sicker and then they couldn't return. If you see that time is short, I would not sugarcoat that. This is your window. Let's put the processes in place for doing that. What we saw were people were really sick, very functionally limited, either needed assistance or really couldn't ambulate very well. And yet, if they have a will to go, like, I want to be home, that people could be very sick and still make it.
SPEAKER_02I know one of the things we talked about often is continence. So putting a catheter in, having the right pads and barriers, notifying the airlines about someone who is really sick, arranging a physician back in their home country, talking to family. It was a tremendous logistical challenge that when I would see it realized was amazed. And it is heartwarming to see the individual be able to return to where they want to be before they die.
SPEAKER_05One aspect of this is when it happens, it elevates the team's resilience that sustains us in the work that we do.
SPEAKER_02What was the longest flight you recall? Do you remember one where you thought, oh boy, this is uh three plane changes and many thousands of house.
SPEAKER_05Mongolia was I'm gonna think was, I think was the furthest.
SPEAKER_02Yeah. Well, congratulations on that transfer. Um, international travel and long flights create a particular challenge. Speaking of challenge, this is an emotionally challenging occupation. How do you cope?
SPEAKER_05I'm gonna come back to again the wonderful colleagues. So I get to do my shout out to the team that was early on. We started out with Julia Sarzin, a nurse practitioner, and Dora Jesus, a social worker. We were supported to train physicians, or Landa Mackey, who actually now runs the program, Rui Sharif, Josh Baruch, Sandra Frelson, Jen Smith, who became the division chair, and Elaine Liu. We also had an interdisciplinary team. Carmen Martinez was our nurse, and Jacqueline Lincoln was our Readman counselor. That's what makes the difference is the team and being able to spell each other, allow each other to talk about things in ways that we may not be able to share with others. Outside of that work family, I make pottery. I've been making pottery since I was a second-year medical student, and I still make it today, and that's a creative release.
SPEAKER_02You mentioned that you would meet as a team. Was that an opportunity to discuss emotions and support each other? Or was that a less formal structure that you would support each other in the work?
SPEAKER_05It can occur in multiple ways. Sometimes In the morning interdisciplinary team meeting, you have to debrief about what happened the day before, especially actually if somebody died. You want to revisit it the next day and be able to reflect on that. There can also be that one-on-one that you have with others during the day. We also built into our program an indirect process of reflective reading and discussion that was a monthly practice where we would read a poem and then talk about the poem, interpret it, and then how does it relate to our work? There can be a way of a team building resilience that is both directly talking about care, but also creating breathing space to reflect on things without saying, How are you feeling? Because sometimes you just can't go there.
SPEAKER_02Were there any particular reflective readings that were important to you?
SPEAKER_05The one reading we came back to multiple times was one by Pablo Naruta called The Lamb and the Pinecone. And it's a a short story about two boys and two sides of a fence, so never seeing each other. And one had a small toy that was in the shape of a sheep with wool, and put that through a hole in the wall. The other boy took it and in return left a pine cone. It was such a beautiful story for us because it was a story about gifts and the mystery of gifts and not knowing when you're being given a gift or when you're receiving a gift. It was uplifting for us to reflect on that. It was just such a beautiful story. We receive more than we give. But not only with the patients and their families, but also within our team, the gifts of what each other was giving to the team as a whole. Each profession has their own gifts to give. And sometimes we see it and sometimes we we don't always know it until further reflection.
SPEAKER_02The gifts that you exchanged with patients and their loved ones were prayer shawls. I wonder if you could describe the impact of that gift exchange.
SPEAKER_05For many years, this has gone back quite quite a bit, almost at the start of the program, I learned of this idea of prayer shawls. Some people call them comfort shawls because they're not strictly for religious people, but bring comfort to our patients. It started with members of my church's community, a knitting group called Common Threads. They prepared shawls and gave them to me to give to our patients. Then people from within the hospital also knitted and crocheted and they came together. And that's why I think it's beautiful that you called it an exchange. Because when we prepared these items, we were able to reflect our thoughts, our prayers, our wishes for those who are going to receive it, even if we don't know who would receive it. Patients and families really embrace them. Sometimes we'd bring it to someone and they would just completely grab around it and lay it upon them. What was really powerful for us in the exchange is that many patients who traveled to their home country took them. And so these threads or this connectedness was in all parts of the world. People would call us afterwards and talk about how meaningful it was to have that remembrance from when they were with us.
SPEAKER_02What impact did it have on those who made the shawls for patients and their families?
SPEAKER_05It's the the process of reflection, meditation, prayer, meaning as people were making these. That's why it it was as impactful for those who made them as for those who received them. Particularly meaningful is that we serve people who are from all over the world. And all cultures have welcomed these gifts. It it reminds me of the piece by Pablo Naruta and the mysterious exchange of gifts that stay with us and then reach people that we may never know.
SPEAKER_02Right. You once told me about having a room that you would lay down and you would have some meditative practice with some of your colleagues in general medicine.
SPEAKER_05Early in the 1990s, there were those who were in preventive medicine, David Goldberg, Arthur Hoffman, and then at N Martinez. So several of us got together in the old hospital to listen to John Cabotson's cassette tapes on mindfulness meditation. Way ahead of your time. Well, you know, so back in the day, and so back in the day, that was the creativity and that the division had to do this. Now it was wonderful to be introduced to that practice back then because I apply that daily in small amounts, mindfully before entering a patient's room. When we wash our hands now with the alcohol gel, that's a practice of mindfulness, attention to that practice, and my breath to enter into the room.
SPEAKER_02You would convene and have some time in the day for you to regenerate.
SPEAKER_05It's not an add-on, especially the reflective reading. It was part of our educational series, and we valued it. This is part of how we can sustain ourselves in this work that we do.
SPEAKER_02You were an educator now, teaching about palliative care. Who do you find most interested in going into this? Is it typically someone who is going through medical school and sees this as their career choice, or do you see people transitioning from other specialties?
SPEAKER_05Aaron Powell What's interesting is how many people had been HIV providers who then did the training to retrain into palliative care. Early on, it was a lot more internal medicine, family medicine. But what we're seeing is a lot of emergency medicine providers who feel like there needs to be maybe a different approach to care. Because there's such a huge workforce shortage, there needs to be involvement of advanced practice practitioners, physician assistants, nurse practitioners.
SPEAKER_02One of the things that I appreciated about Cook County was that you could build a program that wasn't about the bottom line, that not only happened in palliative care, but in other areas, care for the homeless. That's not a population that gets recruited into a health system, but it's the kind of population that gets cared for by the government-run safety net institutions.
SPEAKER_05I think to be able to do it at a system level needed to have the buy-in and support of the C-suite and system level directors, and they were all on board.
SPEAKER_02Once you had the support of the residency program director, the department chair, and other physicians, it was, it sounds like relatively easy to persuade the C-suite that this was an important service.
SPEAKER_05I didn't anticipate that, and so it was really wonderful to witness.
SPEAKER_02You mentioned mentors and colleagues from palliative care. Were there other mentors during your career at Cook County?
SPEAKER_05Bob Weinstein, an infectious disease specialist at Michael Rees, he then became the division chair of infectious disease at County and then the chairman of medicine. He's always been a huge mentor and inspiration for me. I'm reminded of the first patient I took care of in that AIDS clinic at Michael Reese, where the patient had a serious lung infection. We were trying to prevent him from getting the lung infection again, which was called pneumocystis, was to use an uh inhaled medication. But he had complications from that. And so we needed to think of a different route. And Bob said, Well, you know, in pediatrics, patients with leukemia they use trimethoprim sulfamethoxazole or backdrum to prevent it. Maybe we could try that with him. And I was like, sounds good. And we did. And then eventually that was what was recommended.
SPEAKER_02He preceded the recommendations, and that's particularly genius.
SPEAKER_05He was particularly genius, with always such an evidence-based brilliance and humor.
SPEAKER_02The humor was always there. So what what have you been doing since you left Cook County?
SPEAKER_05Well, after I went to a community hospital and then to a local hospice program, they were meaningful for me because I was able to take care of patients from the community I live in and people that I know. Those were powerful experiences, but I really am a public health servant. I also went to San Francisco General, another safety net institution to do palliative care. Now I'm at Chicago Medical School, overseeing the palliative care curriculum across the four years of the medical school. Where everything needs to be going is interprofessional care. So I'm developing an interprofessional palliative care education. For me, it's really uplifting to see the impact that we can have on the next generation of healthcare providers. All healthcare professionals should have at least a fundamental palliative care skill set.
SPEAKER_02What advice to people considering working in government-run healthcare institutions, do you have? Should they do it?
SPEAKER_05I would still say yes. And I would also say that whenever I was needing to rethink things, I tried to remember the mission. There's always going to be challenges, but it gives you perspective to stay the course.
SPEAKER_02So, final question: if you could choose one item to put into your physician's bag, literal or figurative, what would it be?
SPEAKER_05This is easy for me because in the old Cook County Hospital, there were no chairs. And I went to Target, bought a small little folding chair, and when I started consults, I carried that chair around the old hospital, kept it in the new hospital. I cannot stress enough the importance of sitting down when talking with patients and families.
SPEAKER_02Great to have you on the show.
SPEAKER_05Oh, it's been a privilege to spend time with you.
SPEAKER_02After my interview with Kathy, I spoke with Josh Baruch, a former colleague and current palliative care physician in Asheville, North Carolina. Josh had this to say. Did you have an interest in palliative care before seeing the work that Kathy was doing at Cook County?
SPEAKER_01I did have an interest in palliative care before coming to County. I just didn't have a name for it. I did my training at UFC, and we didn't have any palliative care service when I was a resident, and I hadn't been exposed to it in medical school. I decided I was going to be a hospitalist. Brian Lucas asked if I'd thought about doing palliative care. And Kathy was looking to expand that first year when I wasn't on the wards, I was shadowing the palliative care team. And that was really eye-opening and enlightening. I also learned so much about communication and what palliative care was, and also how to do it at a really exceptional level.
SPEAKER_02And what were the most enduring lessons that you learned?
SPEAKER_01The degree of devotion she had to the patients and how seriously she took her responsibility as somebody trying to help patients through incredibly difficult times. Her devotion to the patient in the bed set a standard for me of what it is to be a doctor. It's such a funny thing because Kathy's never somebody I would describe as patient outside of the room. But then you get in there with patients and she would just be so there.
SPEAKER_02Thanks for your comments, Josh.
SPEAKER_01Happy to do it. It's fun to be able to revisit it all, honestly.
SPEAKER_00Inspired to heal podcasts are for informational purposes only and should not be considered as health or professional advice. You're not responsible for any losses, damages, or liabilities that may arise from the use of this podcast. The views expressed do not necessarily represent those of the host or the guest's current or past employers.
