In Part II of this conversation with Dr Christopher Kerr, he and I get into some nitty-gritty about what it would take to have more of us choose hospice sooner – thereby improving patient satisfaction, extending lives, lowering costs, and for sure increasing the quality of our final days. What gets in the way of doing what would make such a difference?

Plus, we talk about:

☑️ How did Hospice and Palliative Care Buffalo get its start? What services have they added as they have grown?
☑️ Who is Dame Cicely Saunders and how did she inspire Hospice Buffalo?
☑️ How do hospices differ? How have they changed?
☑️ What is the balance between regulatory compliance and patient care?
☑️ What does Dr. Kerr wish patients and families knew about their choices?
☑️ What is the argument for earlier referral to hospice?
☑️ How can conversations around dying not be seen as a one-time “check list,” but rather an ongoing narrative in the context of true relationships?

Podcast transcript below:

[00:00:00] Diane Hullet: Hi, and welcome to part two of the best life. Best Steph podcast with Dr. Chris Kirk. Dr. Kerr is part of the team at hospice and palliative care Buffalo. And you can find out more about that or**********@ho************.com. You can find out more about Dr. Qurate, Dr. Christopher. Dot com in part two, Dr.

[00:00:30] Curran, and I talk about hospice, the origins and the big organization that he works for and why he thinks hospice is plays such a key role for people at the end of life. We talk about what patients need to know and what families have to gain by knowing more about hospice before they need to know.

[00:00:51] Thanks so much for joining us. And here’s Dr. Welcome again, Dr. Kerr. So today I’m in [00:01:00] the first part of our podcast conversation. We talked a lot about the end of life experience research that Dr. Kurt and his team have spent 10 years doing and talking to over 1600 patients and families about their end of life experiences.

[00:01:14] And I just think it’s such a rich, rich topic that we’ll probably touch on in this half as well. But I wanted to ask Dr. Kerr more about kind of the history of hospice and palliative care Buffalo, because they’re one of the largest and very active hospices in the country. Um, so yeah, take it from there.

[00:01:33] What would you tell us about that? Oh,

[00:01:35] Dr. Christopher Kerr: it’s, it’s a great story. So, so, so, uh, hospices at its best, um, When, uh, when it evolves from its grassroots origin, right? So hospice was been grew out of our academic institutions. It didn’t grow out of our government programs that actually grew out of a perceived need from the community.

[00:01:55] Um, and we still have one of those organically growing. [00:02:00] Hospices and how we got here. It was kind of fascinating. So dumb Cicely Saunders who’s regarded as the founder of the hospice movement. She was based in London and her first transatlantic trip was to give a lecture at Yale at the school of nursing.

[00:02:18] She was a nurse social worker then became a doctor, um, and in the audience were, were a married Dr. Wife couple who were from Buffalo. And so they end up leaving, uh, Connecticut from leaving Yale, coming back to Buffalo and, um, putting together this effort before. So we started before there was a benefit.

[00:02:42] So a lot of people don’t know that hospice was, was truly volunteer community growing and it had nothing to do with any reimbursement mechanism. So that meant. That means that places like us, our origins are heavily [00:03:00] rooted and we work for, for, and our soul really owned by the community in which we grew.

[00:03:05] Um, and so that’s what kind of happened. We were just, it was literally London to new Haven to us. So we became, I think the 10th or 11th hospital, and that did a number of things. We were pre benefit and we were bubble paints. And, um, the, the folks that energy of advocacy and causal fight, um, is a big part of who we are, the willingness to go into areas, uh, to advance our, cause the pillars, the mission pillars of educating disseminate information and sharing like our recent.

[00:03:43] Um, so we did a lot of things that were very novel and new. We have the, we had the first freestanding inpatient unit, um, in the country. Um, you know, another styles, we were probably the first and 76 or 78, put a palliative care. [00:04:00] Union and a hospital now about 80% of hospitals of any size has in palliative care in service.

[00:04:07] We have a very large pediatric program, which is unusual, a research department. We’re very well known for our bereavement service. So we were at that front edge and actually the, our CEO. The national organization, Don Schumacher for a very long time. So that’s, that’s the word. Yeah. It’s

[00:04:26] Diane Hullet: really the roots of hospice in our country.

[00:04:28] It really is. Yeah.

[00:04:30] Dr. Christopher Kerr: It kind of mirrors the larger story. Right. And, um, and it still holds true. And fortunately, we’re in a state where it’s a certificate of need. So you go to a Chicago for example, and it’s. Profit sector as well. So there’s 80 hospices. And what you have automatically is a, um, is a, uh, is a, uh, is an issue of quality and competition and, [00:05:00] um, et cetera, et cetera,

[00:05:01] Diane Hullet: the wide range, one, one might be terrific and one might be so-so or they have their different strengths and weaknesses, but not this consistent

[00:05:08] Dr. Christopher Kerr: service where on the problem you get, you get into.

[00:05:12] Reality is as if you’re, there are certain things that the, um, that you’ll see on the for-profit side, that they do very well. They develop efficiencies and everything, but if you’re, if you’re working for a margin and what can happen is you, uh, You, you can reduce it to its, its common denominator. You, you know, the extra thing.

[00:05:34] So we have an expansive expressive therapies service, um, that there’s no reimbursement for. We have an abundance of physicians. There’s no real, that’s not baked into the benefit. Um, so I think what those of us on our side of the fence and allowed to do. Uh, or so goal and measure has been the richness and quality of the service delivered [00:06:00] and, you know, being baked in the community of being not-for-profit having a strong foundation has allowed us to have that singular focus.

[00:06:09] Diane Hullet: Absolutely. Absolutely. How, how do you know the numbers? I mean, how many staff and how many patients off the top of your head? Yeah, we

[00:06:16] Dr. Christopher Kerr: serve about 1200 people a day. We have about 450 staff. Um, but you know, we’re a small, we’re a city of. Um, so we serve a lot of the folks on a relative basis.

[00:06:29] Diane Hullet: Sure. And survive assume outlying areas quite significantly.

[00:06:34] Dr. Christopher Kerr: Yeah. Or the rural access has always been a problem. Hospice has, has. Uh, has had a struggle, um, and reaching underserved minorities, rurally placed folks. So it’s, it’s, we have the same struggles as everybody else.

[00:06:51] Diane Hullet: Is that a, is that a, um, those, uh, populations understanding the services they could get? Or is it, uh, what’s, [00:07:00] what’s the rub of not having access?

[00:07:02] Do you think.

[00:07:04] Dr. Christopher Kerr: Oh, yeah. I think it’d be easier to find the holy grail themselves. It’s, it’s, it’s a complicated equation, um, that, that, uh, there’s certainly issues of access. Um, you know, I question the quality of services. Some folks are getting in, whether their caregivers, the. The medical caregivers are actually, uh, referring or helping in transition.

[00:07:34] Um, there’s a feeling understandably that this is, um, they’re being denied, something to get into hospice. And these are groups that have historically been denied access and, uh, and the full richness of, uh, of a rich healthcare system. So I think there’s some underlying. Cultural, um, uh, suspicions, um, that, that are not invalid.

[00:07:57] Um, I think the better question is [00:08:00] what are we doing about it? And, and, and, and looking around the country, because some are doing it better than others. Um, we’ve certainly invested, it’s not being a lack, a willingness, um, but our success in changing those numbers, um, hasn’t been there. It’s out of been out of our reach.

[00:08:17] So.

[00:08:19] Diane Hullet: With, with Buffalo, really being kind of this model in this early, like ground up very carefully built system and big successful system. I mean, what are the key pieces that other parts of the country could take from that and learn?

[00:08:36] Dr. Christopher Kerr: You know, um, I think, I think what’s the reality is, um, that that w as, as the regulatory demands have been increasing the reimbursement relative to those demands has changed.

[00:08:53] It’s undeniable that it’s, it costs more, um, to do this. We’re getting [00:09:00] reimbursed less for doing more. So how do you preserve your, your quality? How do you protect the clinician’s time? Some of it’s just the realities of healthcare. So things like EMR had a disproportionately pulled away from the bedside.

[00:09:16] So our electronic

[00:09:17] Diane Hullet: medical record. So they’ve just

[00:09:19] Dr. Christopher Kerr: pulled basically what ends up in the end. You ended up being highly regulatory compliant, but what have you done to harshly protect clinicians world that side and do

[00:09:29] Diane Hullet: the clinician is so busy.

[00:09:31] Dr. Christopher Kerr: Really? Yeah. You really want your chaplain having access to central conversations with a dying patient while typing on a computer.

[00:09:40] We don’t fit too well in a lot of the healthcare, our, our, our, our, we had lived in this utopic healthcare situation where we, what we’ve done is honor the relationship, not the unit of time worked in the productivity, but you’re forced to kind of deal [00:10:00] right with, with, with some of these demands. Um, honestly I think that.

[00:10:05] To make the difference of having a strong foundation are doing the cause junior community behind us. So a lot of what we’re doing is because we’ve been successful at translating the Goodwill in our community to also support for our foundation. So we actually lose money on the operations. Um, but we do so, uh, Nicole preserving our quality and we sustain ourselves by asking our community to circle back

[00:10:39] pendency. Yeah. You kind of let the good work carrier and it sounds, um, very open it’s it’s it’s actually. Yeah,

[00:10:51] Diane Hullet: I can see that. So the community has to sort of support financially in a different way and people, people who can do so.

[00:10:58] Dr. Christopher Kerr: Yeah.

[00:10:59] Diane Hullet: [00:11:00] What, what do you wish patients knew about hospice? What, what do you wish patients and families realized?

[00:11:06] You

[00:11:06] Dr. Christopher Kerr: know, it’s, that’s a great question. And I would have answered it differently, uh, 10, 20 years ago. So I think the hospice movement. Has spent a majority of its evolutionary time in this country, um, arguing for earlier referral and, um, having the conversation, et cetera, et cetera, et cetera. But if you actually look at the hospice movement, we haven’t budged the length of.

[00:11:36] And what is that very much now for a week or two ago? Third is less than a week for us. So basically it’s a, it’s a spectacular model of care unrivaled. It’s the richest benefit in healthcare. It works. You live longer. Satisfaction scores are off the charts. You’re caring for the family for 13 months, et cetera.

[00:11:58] The case argument [00:12:00] for why hospice. Is additive to one’s life when they need help is just abundantly clear. Yeah. The hospital has to recognize that it has, it has limited its access and it, it doesn’t, it’s a great Biocare, but for too, too few, for too short of time. So I think what’s incumbent upon hospice is too.

[00:12:25] Uh, creatively get outside of the constraints of the hospice benefit, um, and offer other offerings because the hospice hospice benefit is predicated on a couple of things. It’s predicated on a diagnosis of six months or less. And prognostication doctors have never done particularly well. It’s predicated on an open and honest conversation.

[00:12:52] Which is harder to get these days to in a fragmented system of care. And it requires you to give up things to get something. [00:13:00] So you, part of your inadvertently part of fragmenting, an already fragmented healthcare system, where outside of hospice palliative care, um, is additive. So it’s, it’s symbiotic with ongoing treatment.

[00:13:17] You don’t necessarily have to have. From prognosis, you just have to have need, um, you don’t have to give up, um, treatment. You don’t have to wait for any given doctor to tell somebody, Hey, guess what? Um, you know, doctors are all prognosticate by a factor of two to three. So if your program’s built on that prediction, you’re, you’re kind of screwed up the gate.

[00:13:44] So you can’t, you can’t do it. So to do these outside, Palliative care modalities though. There isn’t the economic basis for it. So you have to in a value based healthcare, there’s ever more opportunities. So in a system that met that [00:14:00] measures outcomes, not volumes. So it becomes, in other words, you’re a doctor you’re not paid more for repeatedly treating testing to the.

[00:14:09] On how many times did that person going to the hospital in crisis or an ER, visit? So doing better care where people live with their disease, which is in their home preventative rather than crisis managing people with complex needs and disease states. So all of those things, um, what’s actually happened.

[00:14:31] Palliative care is a rarity in health care that improves quality and it saves money. And the new margins cost avoidance because the sickest 5% of Medicare patients cost to consume 50% of the dollar. So it interesting for me is I know this sounds a little wonky, but palliative care has gone from a cause a nice to do.

[00:14:56] That’s good of you to now. It it’s, [00:15:00] it’s, it’s a necessary thing. And for control costs. Improve quality and satisfaction,

[00:15:07] Diane Hullet: right? I mean, that’s, what’s powerful. It is improved costs and improve satisfaction,

[00:15:13] Dr. Christopher Kerr: analogous to. Yeah.

[00:15:16] Diane Hullet: Yeah, yeah. That’s yeah.

[00:15:17] Dr. Christopher Kerr: That’s what put the way I think, I think of this as preventative medicine for really sick people.

[00:15:22] Right,

[00:15:22] Diane Hullet: right. We’ll put, it seems like, uh, you know, as a, as a society, we’re sort of swimming upstream against, um, both doctors and the medical fields comfort level with saying, I can’t fix you anymore. And then also families and, um, people with illness or age or whatever the. Trajectory of a dying person is with them saying, I haven’t just failed by calling palliative care or hospice.

[00:15:50] So it’s this interesting kind of, um, bias against these measures that actually are cost saving and life improving.

[00:15:58] Dr. Christopher Kerr: Yeah. Yeah. I mean, and, and, [00:16:00] and, and you know, that you live longer, right? Those studies are really clear, but basically what determines outcome, not only quality of life with that disease, but also weather when you die is not just, um, that your tumor gets radiated.

[00:16:15] When is your nausea control that you’re sleeping well, Do you have the practical need things and support, you can stay in your home. So all of those things contribute to not only better life, a longer life. People can comply better with treatment. If their symptoms are managed, I,

[00:16:31] Diane Hullet: I know you referenced them being mortal.

[00:16:34] And, um, and I love that book as well. I’m a tool Gawande and the section where he particularly talks about this one town in like upper Minnesota, I think it was. And he said, The doctors all got together and decided that they would talk to their patients every time somebody came in, they would bring up end of life and get people talking.

[00:16:51] And the fact of the matter was their costs went down and people’s quality of life went up. And I just found that completely fascinating that [00:17:00] conversation had such a big impact because at some point it is the human experience and the medical is just a piece. Yeah, well,

[00:17:08] Dr. Christopher Kerr: you know, it’s, it’s, it’s honestly, um, things like DNR in some ways have, um, it’s self amused people into thinking they were having meaningful conversations around, but, but, but honestly, those are transactional.

[00:17:24] And, um, I, I give you an interesting scenario. So we have an upstream hospice program and. The most effective way to get somebody into a hospice program from my observations is allowing social workers and nurses to go into the whole, know the family, know the situation and develop a relationship conversations around dying.

[00:17:50] We’re not meant to be. Episodic one-offs or you’re clicking off the chart requirement. I come to you and say, Hey, if your heart stops you us started again. Um, you’re going [00:18:00] to say yes, if I say, you know, you’ve got a, probably 3% chance given your disease and you half of the time, you may come out and you’d be brain damaged.

[00:18:06] What do you think? And that can say, well, you know, give some information, come back. And it’s an ongoing narrative. Um, that’s very different. And so we’ve made this so transactional and so, uh, more about, you know, information gathering, data gathering, um, and EMR dictated and, uh, yeah,

[00:18:30] Diane Hullet: no it’s and really it’s those relationships, as you said, when the social workers and the nurses are in the home and have a read on the situation that relationship can have that ongoing conversation.

[00:18:42] Dr. Christopher Kerr: Trust and authenticity, and those are important requirements from your time of what to do with your life.

[00:18:48] Diane Hullet: So, yeah, you’ve developed a, uh, large, um, at home, uh, program for both children and adults. Do, what would you say about how that began to be developed? [00:19:00]

[00:19:00] Dr. Christopher Kerr: Yeah, it w it was really interesting. It was a rarity in healthcare and that it was started by an insurance company is the right thing to do, which was how to support elders better.

[00:19:11] And we were all in favor of, because we thought it was, we needed an option. Other than hospice, we were thinking young people with children who probably need hospice Bronco and go there. And what we were shocked to find was, uh, so to answer your question, insurance companies actually pay us to provide the service.

[00:19:28] It doesn’t make money, but it carries the program. What we found was that, um, A lot of those people really were hospice. And when you allow the us to be present in your home in a relationship and trust to emerge an honesty, and the nurses are connecting the dots from all the involved doctors and a true picture is being painted.

[00:19:49] Patients selected to go into hospice much earlier. So it was, it was, it was really, it’s been an unexpected, fascinating [00:20:00] outcome, but if you just view it from the human dynamic, it kind of makes some sense, which is, you know, you invest in people. It’s time to get to know one another. You’re transparent. Um, you know, you don’t have an agenda other than, than hopefully the truth.

[00:20:16] And then you’re also gathering from them. What are their wishes and wants? And it’s remarkable to find out how many people are complying with treatment. Um, Because they think that’s the choice that they need to make rather than being listened to, which might be something totally

[00:20:32] Diane Hullet: different might be totally different.

[00:20:35] Do you, do you find are end of life doulas or deaf doulas? Is that, um, a phrase or people who are coming through your doors? These.

[00:20:44] Dr. Christopher Kerr: You hear that we don’t have a huge presence in, in, in the town. Um, I know we have programs that are existing and I hear really good things. Um, I think what kind of happened is COVID interrupted a lot of the progress.

[00:20:58] We were hoping. [00:21:00] Um, like we, you know, our volunteers, we have 900 volunteers used to, haven’t been present since cope. So I think it got interrupted.

[00:21:08] Diane Hullet: Yeah. 900 volunteers is that’s a huge disruption to what you and your staff are used to having supportive.

[00:21:16] Dr. Christopher Kerr: Oh, and you want to know what for them as well. A lot of them are like colleagues, you coming to work.

[00:21:21] I’ve been seeing them for 20 something years and, um, and a lot of them are over and, um, and it’s a big part of their life and they’re not here.

[00:21:30] Diane Hullet: It’s a big part, a big part COVID has had such an impact on things, huh? Oh, well, thank you so much for your time. Is there anything else you’d like to add about this or.

[00:21:44] Excellent. Well, thank you again. I appreciate

[00:21:47] Dr. Christopher Kerr: it.

[00:21:49] Diane Hullet: Thanks again to Dr. Chris Kerr who joined me today on the best life, best death podcast. You can find out more about Dr. Kerr at Dr. Christopher kerr.com. And please look [00:22:00] out for his book. Death is, but a dream finding hope and meeting at life’s end and his movie death is, but a dream, both powerful.

[00:22:10] Resources for learning more about his research and to end of life experiences. I feel like these are so rich. And if more of us understood that this was a really normal part of coming to the end of life, we would know what to look for and pay attention to. Thanks again for joining the best life. Best step podcast. .