S2E7: Who Are the Care Workers in Hospice and Palliative Care?

Direct care workers employed in palliative and hospice care play a critical role in supporting individuals with serious illnesses—a sensitive and crucial stage in life. Yet the general lack of good jobs in direct care means that workers don’t stay in this job sector for long.

In this episode, host Robert Espinoza talks to Brynn Bowman, CEO of the Center to Advance Palliative Care, about the workforce needs in palliative and hospice care, why good jobs will improve this care, and how government and industry leaders should intervene.

Robert Espinoza: What would happen to families everywhere if more than 5 million direct care and childcare workers in this country were to vanish overnight? Welcome to Season 2 of A Question of Care, a podcast that explores this question through different viewpoints and topics. I'm your host, Robert Espinoza, a national expert and frequent speaker on aging, long-term care and the workforce. In this episode, we'll focus on the critical topic of palliative and hospice care work with our expert guest, Brynn Bowman.

Brynn Bowman: My name is Brynn Bowman, and I lead the Center to Advance Palliative Care.

Robert Espinoza: Brynn, what inspired you to pursue a career in palliative care?

Brynn Bowman: I pursued a career in palliative care, really, for personal reasons, like I think so many of us. I come from a farming family in rural Minnesota, and my grandfather died when he was 54 when I was two, and he received a diagnosis of a serious illness and a prognosis of one to two months. So, at the moment that he knew he was sick, he also knew he was dying. And what he did in that situation was to tell his doctor, “I'm not worried about getting that last two months or three months of life, but what I need you to do is give me or not give me whatever it is that allows me to safely drive around the county for the next two weeks and say goodbye to the people in our lives so that my wife doesn't have to.”

And that story was part of the family mythology that I grew up with and that we celebrated about my grandfather. That in that moment of crisis, he had made a choice on behalf of his family. And implicit in that story was that his doctor in the health system had helped to make that choice. So, that was one piece of it. When I was a kid, and when I was a teenager, I was really, really close to my great-grandmother, and she lived with heart failure for many years. Her eyesight was so poor that she was legally blind, and she lived in her own home in a small town. She had set up all kinds of systems for herself to make it possible to do that. So, her silver jewelry and her gold jewelry were in separate drawers, because, God help us, so she went out with her jewelry clashed, but she couldn't see the difference.

And so, she was really fiercely independent. And when I was in high school, she had a stroke and was paralyzed on her left side and had to move to the nursing home. It was a high-quality nursing home. It had the advantage of being in a small town where most of the residents knew one another, so there was a sense of community. But still, in that environment, when I would go to visit her, she would say, “I just don't feel like I'm listened to, this doesn't feel like home. I can't do the things I used to do. I feel invisible here.”

And that really, because we had been so close, that struck me really hard as a teenager and stuck with me. It felt like we are a rich country, we do magical things with medicine, and it shouldn't be the case that our relatives we love, when they get older or get very sick, no longer feel like they're treated like people. And that feeling led me down the path towards palliative care.

Robert Espinoza: Thank you for sharing those stories, and I imagine our listeners have various stories that relate to those issues of what happens when serious illness affects us or the people we love. Can you provide an overview of what palliative care entails and what it means for people with serious illness?

Brynn Bowman: Palliative care is a medical specialty, so it's specialized medical care for people living with a serious illness. Palliative care is focused on providing relief from the symptoms and the stressors that come with an illness. So, the goal really is to improve quality of life, and we think in palliative care about improving quality of life, both for the person with the serious illness and their family or their chosen caregivers.

So, the goals are to relieve suffering, make sure that the care that a person receives is aligned with what matters most to them. So, palliative care is generally provided by a team of doctors, nurses, and other specialists, and they work in collaboration with patients, other clinicians, and they provide an extra layer of support. So, it's based on the needs of the patient, not on the patient's prognosis, how long they have to live. And it's also appropriate at any age. So if you are a child or a pediatric patient with a serious illness, if you're an older adult, you can receive palliative care while you're getting your disease treatment.

Robert Espinoza: In your experience, what are some of the most common misconceptions about palliative care?

Brynn Bowman: The most common misperception that we at the Center to Advance Palliative Care are trying to combat at all times, is that palliative care is about end of life. This feeling that, “Oh, my patient's not ready for palliative care, or they're not sick enough yet.” I mentioned that palliative care isn't about prognosis. If you have a diagnosis of serious illness, you have pain, you have symptoms, you have difficult decisions that you're sifting through.

You have trouble getting to the clinic to go to your doctor's appointment. You have fear about the future. Those are the issues that palliative care teams deal with, and those can happen from the moment of diagnosis on. So,we are very careful to make sure that patients understand, families understand, clinicians understand that palliative care is not an end-of-life service, it's an added layer of support at any point while you're coping with a serious illness.

Robert Espinoza: You referenced this in an earlier response, which is the idea that this system is so reliant on a workforce. And while this season of A Question of Care focuses on care workers, I want to talk to you first a little bit about the much broader workforce workers in healthcare professionals who are supporting people with serious illness. What is the role of these professionals in ensuring compassionate and holistic care for patients and their families who are receiving palliative care?

Brynn Bowman: I think we talk a lot about… We use this phrase ‘person-centered care.’ Really, what that means to me, and I think in the palliative care field, is connecting with your patient, having that trusted relationship, so that you can come to understand all of the facets of their experience with living with serious illness. So, not just whether your cancer is responding to treatment, but how you and your family are coping.

Whether your patients are anxious or depressed. Whether they lean on a faith tradition, and is that important to them. Whether people can afford their medications or have pain that's keeping them up at night. So, those are all of the things that palliative care professionals ask questions about, really listen for so that they understand what's going on in their patients' lives. And we can't always prevent illness, but many of the sources of suffering that come with it, we can do something about. And that's the goal in palliative care.

Robert Espinoza: You and I have talked about this in the past, but direct care workers are a critical part of the palliative care experience and system. Are there any stories that really illustrate the value of direct care workers in palliative care?

Brynn Bowman: Early in the pandemic, my grandmother, my father's mother, she had glioblastoma. And we were lucky that, in fact, because of COVID-19, my parents were both working from home. So they could support her to live in their living room while she was on hospice care. But it was the pandemic, and hospice is a fabulous service with rich benefits, but it doesn't mean that help is in your home all day, every day. And they needed extra help, both because they had work to do in their professional lives, and because they just didn't really know the best ways to care for my grandmother. And my mother went to or got a referral for a woman who, prior to the pandemic, had worked in a Nail Salon. And who had, previous to the nail salon, been a nurse's aide in a nursing home.

So, my mother reached out to this woman, her name was Anne. She came to the house most days of the week while my grandmother was on hospice, and she did things like train my parents how to safely pick up my grandmother if she needed to be changed, if the sheets needed to be cleaned, if they were putting her into a wheelchair, so that my grandmother was comfortable during that process and my parents didn't hurt themselves. She was so helpful in making sure that my parents felt comfortable understanding what behaviors or reactions of my grandmother were within the realm of normal and not concerning, versus something they really needed to call the hospice about. She would do things like, on a sunny day, help my grandmother into a wheelchair and walk her around the block, which my parents were afraid to do because, again, they didn't know what was safe.

So, she was just a lifesaver for my family and for my grandmother. But I reflect upon the fact that she loved that work, and she was working in the nail salon because she could make more money than she made as a nurse's assistant in the nursing home. And I think that's something that we should be ashamed about because she was so good at her job and made such a meaningful difference in the people she cared for lives.

Robert Espinoza: I think any of us who have ever benefited from the support of a palliative care worker know that it requires a significant amount of skill, and knowledge, and characteristics to make sure that we're receiving the kind of care we want and deserve. What are the key qualities and skills required for delivering effective palliative care?

Brynn Bowman: So, the key thing, really, is to be observing for and asking questions about what is causing patients distress. And again, that means, certainly, pain, shortness of breath, and other symptoms, but also things like loneliness, and isolation. Things like family conflict that might be getting at the patient, and when new things arise as a disease progresses. So, communication is a really important skill here. I think direct care workers in all roles have a really important role to play asking open-ended questions of the people that they're caring for so those people feel comfortable talking about how they're feeling.

Another element of this is asking about and understanding what is important to patients. Once they have that diagnosis of a serious illness, life changes. So what are their goals? What is important to them? What does it mean to have quality of life in the context of that serious illness? Certainly, direct care workers working in patients' homes can be alert to safety risks. Is there a rug that the patient is stumbling on that should be reported to trigger a home safety evaluation? And, in general, communicating all of these rich observations and interactions about what is happening to a patient to the rest of the care team.

But I would say, above all, the skill is about getting to know the patient as a person. Direct care workers can play such a critical role, day in and day out, providing emotional support for patients, and not just for patients, but for caregivers. There's an important role there thinking about relieving social isolation. So often, when a person is very sick, they may be afraid to or unable to participate in some of the activities that they used to really love and that brought them community, and a direct care worker, in many cases, is that community for families.

Robert Espinoza: Brynn, you've shared numerous ways in which care workers are such a critical part of the palliative care system, and yet, these workers are also experiencing severe challenges. What are some of those unique challenges faced by care workers in palliative care and in end-of-life settings more broadly?

Brynn Bowman: In every corner of healthcare, there are major systems challenges affecting everybody who's working inside of the system. But I think, when you're talking about patients with serious illness, it's where the rubber really hits the road in a lot of cases. And very often, what care workers, what the medical team, what anybody working with that person or their caregiver sees is that patients and families need things that can't be paid for. It puts families at risk, and it's really distressing, talking about moral distress, for the care workers and health professionals who are working with that person.

One of those things would be… We talk a lot about the social determinants of health, but again, for patients with a serious illness, the stakes are very high. If you are choosing between food or the electric bill and the copay on your prescriptions that month, again, that could be determinative in terms of the course of your serious illness. So, those systems challenges and learning how to navigate them, which care workers are often crucial to that navigation for patients and families, that's a major challenge in working with patients with serious illness and a major focus on the advocacy that I think all of us in this world of serious illness are focused on. Another element that comes up, particularly in patients with serious illness, is relationships; family relationships, interpersonal relationships.

Many, many people living with a serious illness rely on support from caregivers, and that can put care workers in the middle of sometimes complicated, sometimes contentious interpersonal dynamics. So, that's another thing to navigate. And, on a personal level, I think, for care workers, it can be emotional working with very sick or dying patients. So, on that level, it can be hard for care workers to cope, and it really helps to have your own support system in that context and a chance to talk about your experiences.

Robert Espinoza: I'm glad you mentioned that because it certainly seems that providing this type of support to people with serious illness can be emotionally very taxing on workers. It's a process that affects everyone; the worker, the person receiving that care. What support systems are available for care workers to cope with the emotional demands of their roles?

Brynn Bowman: We think a lot about this at the Center to Advance Palliative Care and consider it to be one of our responsibilities to be thinking about the health and well-being of the people caring for people with serious illness. And one intervention that we started providing early on in the pandemic, and have continued because it has proven to be important to the people we serve, is virtual well-being debriefings. It's an evidence-based technique that relieves anxiety.

Our sessions are facilitated by trained chaplains or social workers and can be attended by absolutely anyone working in healthcare. And they’re a chance to talk about what your experience has been, what is hard, what is rewarding. To get validation for those emotions that come up when caring for patients with serious illness, and to have a sense of community support from the other people on the line in that session. So, we do provide those services directly, but we also offer facilitator training. If any of your listeners are working in healthcare organizations and interested in providing that space to talk, and to process, and digest for the care workers in your organization, where facilitator training can help you prepare for that.

Robert Espinoza: In this season of the podcast, we're asking all of our guests to paint a picture of what our society would look like if we had no care workers. And I want to pose this question to you in this context. How do you think society would be different if there were no care workers in the palliative care and end-of-life system?

Brynn Bowman: So I think you ask palliative care professionals this question, and 10 out of 10 times they will say it is the non-medical things that so often drive people with serious illness back to the hospital. It is confusion about meds, how to properly take a complicated pharmaceutical regimen. It is having no one to call if you're in a crisis. So, it is those things where care workers are so instrumental in helping patients and families stabilize, cope with all of the home health care tasks that they are responsible for, and that help to avoid those crises.

If we didn't have that care workforce, families that don't have that support, it can mean that patients who could have avoided it end up going to a nursing home, which often they didn't want to do. It can mean that family members need to quit their jobs to care for patients. I mentioned that my grandmother could not have been home on hospice had my parents not happened to be working from home because it was the middle of a pandemic. These are challenges that are very common and where care workers are often the glue holding it together for a family.

Robert Espinoza: It's a bleak picture, for sure, to imagine us not having any care workers in the palliative care system. I want to shift the conversation to interventions and solutions. What do you see as the future trends or developments in the fields of palliative care that could really improve this system?

Brynn Bowman: The field of palliative care has grown a lot in the last 20 to 30 years. So, it's now the case that, in most hospitals, not the smallest hospitals, but most 50-plus-bed hospitals in the country have a palliative care program. Nine out of 10 patients if they go to the hospital are at a hospital that provides palliative care. And in the last especially five years, more and more palliative care is being delivered outside of hospital walls, in outpatient clinics, or directly in patient's home.

So, the coordination here is challenging, but critical, between palliative care teams, other specialists, the care workers in the home, and the person's medical teams, so that everybody is working in concert and understands what our patients needs, who is addressing what. But I think, as the country ages, and especially as people live longer with serious illnesses, as our medical interventions become more and more effective, it's that setting in home care for people who are living with a serious progressive illness, who can't easily get to clinic, that home-based care is really critical. And what's happening right now in the field of palliative care is a lot of trying to figure out the right model for coordination and communication with all of the health professionals going in and out of that home, the right model for high-quality specialty palliative care delivery that gets patients what they need, that makes appropriate use of a relatively scarce resource and trained palliative care professionals.

And, of course, because it's the world we live in, that is financially viable, given that there's no Medicare palliative care benefit. So, when I look ahead at the future, that trend is really encouraging in terms of expanding access to palliative care services, that you really need to invest in quality and invest in having the right people on the team in order to get those results, those outcomes, for patients that are the most important.

Robert Espinoza: To bring about some of these changes that you're describing, it seems like there's a strong role for both government and for industry. And I'm curious, what kinds of public policies or systemic changes do you believe are needed to better support care workers in palliative care?

Brynn Bowman: I'm going to be preaching to the choir here, but if we're talking about care workers, they need a living wage, period. And the way that we pay them needs to match what is happening in the lives of people with serious illness. It's generally not the case that a human being has exactly 60 days of skilled need for a home health episode, and then that need goes away. And things like personal care help with some of the tasks of daily living.

We don't, in most contexts, pay for that work at all. And when we do the people doing that incredibly important work that, again, helps keep family members in their own jobs, that helps make the whole thing run for families, they so often don't get a living wage. So, sitting in the palliative care world, we are a medical specialty, we and other specialty teams can't optimally serve patients if their personal care needs, if those skilled needs in the home aren't being addressed.

This is all one system, and right now, there are so many gaps that patients and families fall through, and that make it impossible for people who are really passionate about caring for patients with serious illness to afford, ironically, to have that job. That is, I think, a crisis that we are going to need to reckon with in the coming years, again, as the population ages.

Robert Espinoza: Let me ask you one last question. If you could wave a magic wand and create one significant change that would better support care workers in palliative care, what would it be?

Brynn Bowman: You have two hours? If I could wave a magic wand, it would be the case that the value of every member of the care team, from care workers, to chaplains, to social workers, to counselors, was valued. And when I say valued, I mean in terms of the respect that we hold for their work as a society and the way that they are compensated. And I think, for that to happen, the first step is, again, we as a society have to acknowledge that our problems aren't just medical.

We are lonely. We have existential crises about aging and death. We are struggling to put food on the table in some cases. We limit our time with family because we have pain or we're scared to get short of breath. So, all of these things where the best-laid plans for treating a serious illness get derailed when we ignore these factors, and that means we ignore the expertise that we need to address them that is right in front of us.

So, I think, you and I have talked about several of my family stories in the last 20 minutes, and it's obvious when it's our own families, it's our own loved one, but at the policy and the systems level, we have got to recognize that, without a healthy care workforce representing all of those areas of expertise and those roles, we are not providing the highest quality healthcare we can to patients.

Robert Espinoza: This episode is especially meaningful to me and likely to many of our listeners who have endured the painful experience of losing a loved one. When my mother died of COVID-19 in December 2020, she was alone in an understaffed nursing home in northern Colorado, which had gone into lockdown.

In my last memory of her, she struggles to breathe, and she sinks more and more into the bed, as one of the few workers there tries to comfort her. In contrast, my father spent his final weeks in a well-equipped palliative care center nearby. He was surrounded by caring professionals who attended to his every need. When he was moved to the veterans wing of a nursing home for his last week, his primary attendant assured me that he would receive the best care possible, saying he deserved it—as if only some of us deserve that grace.

How we die often reflects how we've lived, been treated, and the opportunities society has given or denied us, a concept we explored in season one of this podcast. The workers around us in those final stages play a crucial role. Do they have the professionalism and the skill to help us pass away with minimal pain and with dignity, or will poor quality jobs and workforce shortages leave us without dignified care?

For nearly 10 years, I led a think tank focused on direct care workers. One of my most frustrating experiences was when a healthcare leader would refer to interpersonal skills as soft skills, when, in fact, these relational and problem-solving abilities are far from soft. In this capacity, workers build trust with their clients, they handle high-pressure situations, they help resolve family conflicts, and they make tough decisions on the spot, often physically isolated from their colleagues. Sadly, much of this social and emotional labor goes unnoticed except by those who directly benefit from it, and that sobering fact needs to change.

Thank you to my guest, Brynn Bowman, and to you, our listeners. If you enjoyed this episode of A Question of Care, please share it on your social channels and stay tuned for future episodes. This podcast was produced by me, Robert Espinoza, in partnership with Modry Media. Please make sure to rate and review the podcast wherever you're listening.