Striving for dignity and peace in end-of-life care

Join us in this episode as we explore the topic of end-of-life care—the differences between palliative care and hospice care, the work of death doulas in supporting people at end of life, ways to offer support through grief, and some of the challenges and opportunities that exist in caring for our aging population. 

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Episode transcript

Ellen

Stronger communities begin with good health—for everyone.

You’re listening to the “Good Health, Better World” podcast from UPMC Health Plan. This season, we’re exploring the joys, challenges, and opportunities associated with healthy aging. We’ll talk about what it means to age well; how to care for body, mind, and spirit as we get older; and the tools and programs available to ensure a good life, throughout life.

I’m your host, Dr. Ellen Beckjord. Let’s get started.

Ellen
In this episode, Tanisha Bowman and Cindy Grindel join us to explore the topic of end-of-life care—the differences between palliative care and hospice care, the work of death doulas in supporting people at end of life, and some of the challenges that exists in caring for our aging population.

Tanisha, welcome to “Good Health, Better World.”

Tanisha
Thank you for having me.

Ellen

Cindy, thank you for joining us on the podcast.

Cindy

Nice to be here.

Ellen

So as we age, we ultimately approach the end of our lives. And that experience can vary so widely. Tanisha, if I could start with you, what are some of the challenges and opportunities related to end-of-life care? And then Cindy, I'd love to hear your perspective as well. But, Tanisha, if I could start with you, please.

Tanisha

The one I'm seeing the most in my work is lack of resources. Covid really changed health care. So as people have greater need, there are less people there to help them.

There is a new normal that we haven't completely adjusted to yet when it comes to end of life.
And that is, staying at home is so much more difficult than it has been in the past. We have children who are far flung, you know, they don't live in the same state as mom and dad anymore. We've got this sandwich generation thing happening where like, people are trying to care for aging parents and for young children. And I joke that the days of the inheritance are no longer with us because we need those funds now to fund people living the last chapters of their lives because the supports that we used to be able to rely on have changed.

And while younger generations are more comfortable talking about death, if they don't know what that is going to look like, that's not really going to be helpful later, because they're not going to be prepared, they're not going to be ready. So I think that having these conversations and showing people that there's a lot to dying; dying is a natural process, but there's a lot of stuff that comes with it. And your preparedness for that could affect the way you experience it.

So I think opportunities, especially for health care, are, how do we do things differently to be able to help support people in their homes, knowing that we're lacking those particular resources that we were so used to leaning on?

And I also think that there's a part of end-of- life that we forget, and that's the people left behind. It's the survivor. When I started thinking about the concept of a death wound in society, I realized that it's because of the way we lose our people, you know? And in being in a hospital setting and seeing those ICU deaths and, like, just seeing what goes into it or seeing people struggle to keep people at home, it's like, what is that going to look like for those people as they move forward?

Ellen
Yeah. That's a great point. Cindy, what are some of the challenges and opportunities that you observe?

Cindy
You know, for all of us as we go through life, change is an inevitable part of something we all face. But certainly as we age, as we reach end of life, some of those changes can certainly be challenges. We think about changes that involve losses as well. When someone's diagnosed with a life limiting or life-threatening illness, some of those losses might be loss of mobility, loss of independence, loss of social contact, social activities. And we know that some of those can be challenging. And we also know that with each of those losses, as an illness progresses for example, there's a series of losses that can happen. And so sometimes those can be quite challenging. Each of those losses involves an adaptation of some sort, whether it's physically adapting, whether it's mentally, psychologically adapting to something, grieving is a very normal part of that process.

You know, we think of grief typically as something that happens after end of life, right, when somebody dies. But grief is something we experience throughout that whole process, I think, both the patient as well as the family and caregivers.

On the other hand, in terms of opportunities, I think—and this has been my personal experience in some of the personal losses I've experienced is—while it can be a challenging time of life, I think it can also be a very meaningful time of life. Sometimes when we have limited amount of time, however long that is, it gives us a different perspective on what's truly important. And it allows us to focus on what matters most.

Ellen

There's so much uncertainty around end of life. You know, even people living with life-threatening or life limiting illness, rarely can we really pinpoint exactly when our lives are going to end. And as you've both pointed out, it's fraught with loss and grief and things that, if given the choice, most of us typically probably try to avoid or maybe even deny. Yet we all know this is going to be a part of our experience of the world. And my experience in some of the work that I've done is that with just even a little preparation and support, you really can capture an opportunity to create an experience for yourself and the people who care the most for you that is meaningful, sometimes transformational.

And so it's such a shame when we don't do enough as a system to support people to reliably have access—if they want to—to those kinds of supports and interventions that can be so helpful and so transformational.

Tanisha

That makes me emotional. Just, you know, as a palliative care social worker, because the amount of families that we support that are then like, “I don't know what we would have done had we not met you guys, like this would have been so different.” The amount of people we meet too late. When we do get people when we have time to help them prepare, it's, I call it like a gift, you know, the gift of knowing as opposed to, you know, I started this work in an ICU setting, an acute setting. And so we don't always have time in that setting. But now that I've worked in an outpatient palliative care clinic, I've been able to catch people sooner and been like, let's prepare. Let's lay the groundwork for you to live your best death. But it's impossible if people don't come to us and some people don't even know we exist.

Ellen
Yeah. Cindy, did you have any thoughts you wanted to share on that?

Cindy

I think it's, you know, I think in some ways we've come a long way in terms of talking more openly about death, dying, end of life. On the other hand, it's still a topic that people have a lot of discomfort around. And sometimes that's their own discomfort that prevents people from talking about it. Sometimes it's feeling uncomfortable for fear of upsetting the person that you want to talk to about those things. So I think sometimes we delay those conversations because we want to avoid the stress of them. But in doing so, whether we know it or not, we end up creating more stress in the long run in a lot of ways.

Tanisha
I agree with Cindy. We've come so far in talking about this, and I came to this work through the death positivity movement. So thinking, you know, we need to talk about this stuff, face our own mortality. Having been in the trenches now, I think it's time for us to elevate the conversation, though.

So, the series of talks that I've been doing at senior centers right now about prepping for the inevitable, death, is really about what it looks like to die, because it's one thing to know that you're going to die. But the amount of people that I come across who, let's say, have made someone promise never to put them in a nursing home. I get that promise. But I am also supporting the child who made that promise, who cannot keep that promise. And people just don't know because we don't talk about it and we don't talk about our experiences going through it with each other afterwards. Nobody knows what it is like to care for a dying person and clean up the mess afterwards. So now it's like, all right, so we're getting more comfortable talking about the concept, we need to get on the ball and start talking about what this looks like so that people can start preparing.

Ellen

I couldn't agree more. And I'm so glad that we're talking about it now.

Tanisha, could I ask you to please explain the difference between palliative care and hospice care?

Tanisha

Yeah. Part of the reason why palliative care isn't always utilized as soon as we would like is because some people think that palliative care is the group that comes in and takes everything from you. And they also equate that with hospice taking everything from you.

The thing is, hospice is about changing your focus from curative care and aggressive treatments to focusing on the quality of your life and pulling back from the things like poking and prodding and tests and specialists and doctor's appointments and keeping you home—wherever home is—while you, you know, are in the last chapter of your life.

Hospice is a form of palliative care in that it's palliating symptoms. It's managing symptoms in a very specific way. But palliative care is for anyone with a chronic, serious, life-limiting illness who's going to need supports for symptom management or for supports like Cindy was saying—there's a lot of grief and loss that comes with serious illness and processing all of those things—and then resources.

As people are still going through treatment and even when they stopped going through treatment but aren't ready to say the hospital doesn't matter to me anymore, that's usually when we know you're ready to go from the palliation of your symptoms in this still medical-based setting to staying where you're at and having your symptoms managed there. So they're both there to support you at the end of your life. But not all palliative care patients are actively dying. And, you know, hospice is a six-month benefit so people have been on hospice for years, but it really just boils down to do you still value your specialist and your doctor; if you're not really getting anything out of that, then maybe we should think about shifting our focus a little bit.

Ellen
That's a really helpful explanation. Thank you for that.

Cindy, in your work, what are some of the ways that you think work best for supporting people at end of life to experience that time with dignity, comfort and peace? What are some of the things that you've noted really facilitate what some people call a “good death,” or I think, Tanisha, you said “living your best death” or “living a good death”?

Cindy
Well, from my perspective, and I've primarily done grief counseling, one of the things that we can all think of is just being present. If you think about any difficult time you go through in life, any of us, what most of us want is not someone who has all the answers, makes everything better, gives lots of advice.

It's really, what we want most—and I learned this from hospice patients as well as families—is someone just to walk with you through it, right? Someone who will sit with you in it, be there to support you and help you to feel heard.

When we love someone, we want to try to make them feel better, right? That's just our natural instinct when we love someone. But sometimes what we need to do instead is to validate their experience. You know, listen to their fears, listen to their concerns, listen to their joys, their hopes, their dreams, what they still want to be able to get out of life, you know, support their quality of life as well. But I think just validating what that person's experience is can be helpful.

And as Tanisha kind of said, you know, taking some time to ask what their fears [are]. Lots of times people fear what death will be. Am I going to be in pain? Will I be able to be at home? And sometimes while we don't have all of the answers, we can't say for sure about some of those things, we can do a lot to alleviate some of those concerns or at least address them.

Ellen
As you were both talking, I was thinking about how, you know, this discussion is an important discussion in any context, but we're having it during this season of “Good Health, Better World” focused on aging.

End-of-life care is not an issue that is only important in the context of aging, but it shows up a lot as we get older because of the relationship between age and death. And I think that this is kind of a global issue around aging in general. You know, that we, we kind of as a culture don't want to be very present with aging, and we don't want to be very present with the changes that occur as we age. We're all aging. We're all going to die. We're, you know, dying from the moment that we're born. And just kind of being present in that place and navigating from there again opens up tons of possibilities, especially when the right support is in place.

And so the work that both of you do is incredibly important, because I think, my sense—tell me if you disagree—is that there are there are people who may be very resistant to that, and they'll always be resistant to that. And that's their journey. There are people who are very open to it and have been for a while and there’s lots of folks in the middle who with the right intervention, the right connection, the right support, can be guided along a path that is probably one that will align a lot more with their needs, preferences, and values at that time in their life.

Tanisha

I think when you realize what leads to death anxiety and what the root of that is, it's about legacy. It’s about feeling like your life mattered. And there's a whole dignity therapy movement around people at end of life having this concrete example they can hold in their hands of what their life has meant.

And so when we're talking about aging and we're so resistant to it, we're reaching for immortality, we don't want to look our age, we don't want to feel our bodies breaking down. It's also created this interesting dynamic where I'm supporting a 70-something-year-old child who is just blown away that their 96-year-old parent is dying, because we're so focused on being well and living as long as possible.

So it’s like, how do we meet people where that wound is? Like what are we actually worried about here? And it's leaving this world without having left a mark. And so if we can like bring that up in people, then that's where that piece that I'm always looking for really starts to come in.

Ellen
Our last season of “Good Health, Better World” was focused on women's health, and we talked with a birth doula about their work bringing people into the world. And so, Tanisha, I would love to hear you talk about your work as a death doula and maybe define that for listeners who aren't familiar with the term.

Tanisha

So I trained as a death doula, or end-of-life doula, right as I was transitioning into palliative care. And it was because I just had this desire to sit with people at the end of their lives and hold space for that. And I didn't really understand what it was that I wanted to do, but it was like this was a thing. So I went after it. I've actually not worked at the bedside as a death doula because I went straight into palliative. But I am part of a death care collective.

But in general, it's just people who want to add another layer of support to whatever support a dying person has. So some people are on hospice and they're getting that medical support. Death doulas are not medical at all. So that's a little bit of a difference between a birth doula and a death doula. We're literally just people who are comfortable with death, can sit in it, can support people, can help do legacy work.

Death doulas are rapidly trying to come into the medical arena to fill in gaps. Like I said, there's lack of resources. So if having a death doula is something that keeps a person in their home with hospice because they have somebody there, that's a thing. It's fascinating because people look at me and they're like, why would you want to do that? And I say, I don't know. You know, when I was 16, I told my mom I wanted to work at a funeral home and sit with sad people. Just out of the blue. And that's literally what I do now. And it's just, it's a fascinating kind of setting to be a part of. When you're talking about, like, actively participating in someone's death.

Ellen

Well, I'm so glad that we're featuring your work as a death doula in this episode, and that people are starting to talk about death and birth doulas more because I think you said filling gaps. I mean, there's tons of gaps to fill. And the consequences of those gaps can be really devastating. So it's wonderful that we're beginning to fill them with people who, I mean, you know, your story is unique. Everyone's story is unique. But my sense is that people are really drawn to this work. And so, they show up in it in a really important and meaningful way.

Tanisha
There's a lot of work to do in death care. There's spaces for lots of things to do.

Ellen

Yeah, absolutely. Cindy, in the course of your work, is there anything more that you care to share regarding some of the barriers that people face to processing or even like metabolizing their grief, sort of anticipatory grief before death or grief among folks who survived the death of a loved one? And what changes have you seen over time and how that is going for people, or the kinds of resources that we're bringing to the table for people, or the degree to which we're even talking about it as a time during which people might need support?

Cindy

To pick up on something Tanisha said about being comfortable, you know, I think that's one of the things that we can do—whether you're a professional or not. Sometimes it's finding a way to be comfortable with discomfort, right? It doesn't mean you have to be comfortable with death or dying or not have any anxieties or fears yourself. It's the willingness to openly talk about that.

I'd encourage anyone who's listening that if you don't have friends and family that have a comfort level with that to find, whether it's your health care professional, a counselor, someone in your faith community, but someone with whom you can discuss those things. I used to do psychotherapy earlier in my career. That's not what grief support is, right? It's—grief is not a disorder. It's a natural response to losing connections with—whether it's pets, family, friends, whatever.

Sometimes we try, we want to try to rush people through grief faster than it's normal to go. So it's just that comfort with being uncomfortable, sitting with uncomfortable things. And I've seen, you know, the vast majority of people that I've worked with who have [been] grieving, they get to a place on their own, with support, you know, with presence, with people offering the gift of their presence. But it's something I think that most people find their pathway. It's different for everyone. Grief is different for everyone. And their path is different. But support, I think, is crucial.

Tanisha
What Cindy said about, grief is not like a disorder, that's made my brain go “boop!” You know, prolonged grief disorder is coming up a lot at these conferences that I'm going to and stuff, and it's like, what are we doing? What are we trying to do here? We're developing medications to try to get people to the other side of something that, as Cindy is saying, is very natural, like, why are we not even allowing ourselves?

And the answer is a lot of it comes down to productivity. You know, there's a mind-boggling study that I just saw about the impact of grief on the workplace and how dealing with the aftermath of a death leads to people struggling at work, struggling to show up. I mean, people trying to, you know, make phone calls and get death certificates while also trying to be productive and showing up. And it's like, there's an actual impact on the rest of society. But the answer isn't necessarily to just push everybody through it. It's not, you know, having a three-day bereavement and then having, you know…I suffered a twin miscarriage while I was still working as a palliative care social worker. And I came back to work and I was like, this isn't enough time, you know, like, I know what I'm doing here and I can support myself and I know the supports I can get. But like, how do you expect people to just bounce back like that? And we do. We don't let people talk about it. We're not comfortable talking about grief. We want people to stop crying. “Everything's OK. They're in a better place.” We do all of these things because we're uncomfortable. So, like, the best gift we can give to people is to be like, I'm OK being this uncomfortable with you, because that's what you need right now to get to the other side.

Ellen
Yep. For as much as I think we tend to want to avoid or deny death, it is a topic that fascinates us as humans. And so the work that both of you are doing and that people do to bring it out of the shadows, to hold space for people that are experiencing it at any point in time is just so critically important and I think some of the most humane and caring work that we can do to love and support one another.

But my last question, Cindy, I'll start with you and then Tanisha I'll ask you the same question, is what are you most hopeful about in the context of the work that you do? What do you feel most hopeful or excited about as you take part in this important work?

Cindy

I have to pick up on something Tanisha said. And that is about grief in the workplace. So I currently work for an employee assistance program and have developed a lot of trainings around grief and supporting people in grief. And I think, you know, just as we talked about educating people who are at end of life and their families or caregivers, I think there's also a need for education for people in the workplace. You know, it's not that people don't want to be supportive of people who are grieving. They simply sometimes don't know how.

And so, at the EAP we've created some trainings for managers on leading through loss, those kinds of things, to help to help supervisors, managers understand, you know, it doesn't have to be productivity versus supporting someone. We can find ways to normalize grief in the workplace, to allow people to grieve and to support them in getting their work done. So that's something exciting, kind of, that I'm working on now.

And the other thing I would say, just in terms of hope, is something I've learned from my experience both personally and professionally, and that is that it can be a meaningful time of life. Whatever your age, whatever your health status, you still have something to offer. And that has been my experience as a caregiver—whether it's been as a grief counselor, as a family member providing care and support—is that even though I'm giving something of myself, I have always inevitably received, right? Just listening to patients’ life stories, the lessons they've learned and shared with me about how to make a marriage work, how to get through difficult times in life. Those are all gifts that I have been given by people at the end of their life.

Ellen
Yeah. It is such a privilege to do—to do this work.

Tanisha, if I could ask you to please talk about, in the context of the work you do, what you feel most hopeful about?

Tanisha
So I have been very surprised at all of the opportunities that I have been given personally to speak. And as I was thinking about your question, I was like, as a social worker, I'm all about revolution, you know, like, let's change the way things are being done. This isn't working, you know, whatever.

So my hope is in the people who are interested and that are reaching out because people are curious and are allowing the people in the shadows, as you said, to kind of come out and like, shine our lights, we’re like, Hii, we're over here and this is what we're doing. Doing things that are bringing palliative care and hospice and end of life into the forefront, you know. Doing a grief memorial wall and getting in the newspaper and having patients come in two years later like, “I think I saw you,” you know. Like that's what gives me hope is like, maybe we can—the tide is turning. The ball is rolling down the hill. We're picking more people up as we go and people are becoming more aware that our services exist, that you don't have to die alone, that there are people out there that are comfortable with this and willing and ready just waiting for you to show up.

And so I just, I mean, there's a lot. But it's the fact that every time I turn around there's somebody who's like, “Hey, will you come talk to these people?” I'm like, yes, please let me, let me do that. And the fact that that's happening is just giving me so much hope.

Ellen
Oh, yeah. The momentum that is gaining it sounds like a super hopeful. That's wonderful.

Tanisha, thank you so much for being with us on the podcast.

Tanisha
Thank you for having me.

Ellen

Cindy, thank you so much for taking the time to talk with us on “Good Health, Better World.”

Cindy

I appreciate the opportunity to be here today.

Ellen

Thank you both for the work that you're doing, and I'm so glad that we're able to raise some awareness of it and the work that many like you are doing on the podcast. I really appreciate it.

Tanisha

Thank you.

Cindy

Thank you.

Ellen

We hope you enjoyed this episode of “Good Health, Better World.” Be sure to tune in next time and visit upmchealthplan.com/goodhealth for resources and show notes.

This podcast is for informational and educational purposes. It is not medical care or advice. Individuals in need of medical care should consult their care provider. Views and opinions expressed by the host and guests are solely their own and do not necessarily reflect those of UPMC Health Plan and its employees.

Guest speakers:

Cindy Grindel

Senior Program Manager with LifeSolutions Employee Assistance Program/ Workpartners

Cindy is a licensed social worker and Certified Grief Educator with a wide range of experience in organizational training, critical incident response, and counseling. In her current role, she provides support to workplaces experiencing trauma or loss and conducts workshops for businesses throughout the region on topics including grief/loss, compassion fatigue, stress management and mindfulness.

Prior to joining the EAP, Cindy worked as a hospice bereavement coordinator supporting patients and families through illness and loss and conducting trainings for staff, volunteers, and community groups.

Tanisha Bowman

Death Doula

Hospice social worker

Tanisha Bowman is a death doula and former palliative care social worker who is now making a career transition into hospice social work. An up-and-coming leader in her field, Tanisha lectures at hospitals throughout the U.S., does a multitude of end-of-life related education at both the clinical and community level, and has been interviewed by multiple podcasts and media outlets. Her passion for helping people live their best death is a major driving force behind her work and she is always honored to be given opportunities to share her knowledge and experience with others.