In this week's GeriPal podcast we talked with Dr. John Nelson, who has been Medical Director of Hospice of Humboldt for 17 years. Hospice of Humboldt serves the area around Eureka, a mix of town and very rural locations, and has several unique features, including:
Economically depressed since the collapse of the fishing and logging industries
Marijuana farms are a major source of employment for the area
Relatively high rates of methamphetamine use
We talk with John about hospice in rural America, Hospice of Humboldt's approach to Physician Aid in Dying, and use of marijuana and psychedelics near the end of life.
Our next post, later this week, will be a story/essay from a physician who also practices hospice and palliative care in Humboldt.
I guess it's Humboldt week!
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Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Anne: And Anne Kelly.
Eric: Alex, who do we have as our special guest today?
Alex: Today we have John Nelson, who is the Medical Director of Hospice of Humboldt, and has been for 17 years. Welcome to the GeriPal podcast.
John: Well, thank you. I'm quite pleased to be here.
Eric: So we're going to be talking a little bit about providing hospice care in rural America, but before we do that, John, we always ask our guests, do you have a song for Alex?
John: I do. It's Bob Dylan 'Don't Think Twice, It's All right.'
Alex: Terrific, and you're going to join?
John: I will.
Alex: Well, I got most of the chords, some of them, but really nice harmonies there John. Thank you for joining.
John: Well, thank you.
Alex: So, John, tell us you've been working there for 17 years?
John: I have.
Alex: Thinking back 17 years ago, what got you started in this position?
John: Oh well, it actually goes back to before that. It goes back to my days as a medical student, and basically deaths on the ward. It always struck me as bizarre that if you were off for a day, you'd come back and somebody would just be gone, and there was never any real appreciation or there's a disconnect in that. And that was here actually, I was a medical student at UCSF.
Eric: Oh, really?
Alex: Oh you're medical student UCSF.
John: Yes, I’m a classmate is Steve Pantilat.
Eric: Oh wow.
Alex: What year did you graduate?
Eric: So you did med school, here at UCSF.
John: I did.
Eric: How did you end up, because I don't think probably many med students here at UCSF end up practicing in rural counties in America. How did that happen?
John: I went to med school with the idea of practicing in rural counties. My residency training was in family medicine, and I did that for a long time, I did sort of the whole scope of family medicine including obstetrics-
Eric: What attracted you to more rural medicine? Was that a consideration?
John: Yeah. Well, I like the idea of being kind of an old time family doctor. That's something that I felt was always cool, and I still think it is. I think it's how I approach hospice actually, and it was a terrific background for doing hospice, I think also. I never did a fellowship, there was no such thing as fellowship. I got grandfathered-in in hospice and palliative care when you could sit for the first exam. So, that was what I wanted to do. I thought I would be a rural family physician for the rest of my career and I sort of got this job kind of dumped in my lap. The predecessor in my job was Michael Fratkin, who-
Eric: Oh yeah, who we had on our podcast.
Alex: Prior guest of the GeriPal podcast.
John: Right, and when Michael was moving into the inpatient palliative care stuff, the hospice actually sought me out and asked me to do this. And I had done some work for them previously, I would cover for Michael when he was out of town. So it was sort of my dream job just ended up falling in my lap and that was pretty cool. I've been doing it ever since.
Alex: It maybe would be helpful for our listeners if you described the sort of setting. What is Humboldt County like? They may have heard about it probably, and if they've heard about it and they're somewhere else in America they've probably heard about marijuana.
Alex: They may not have a good idea of the beauty of this-
Eric: Or they think of California as one monolithic place, sort of Los Angeles, San Francisco.
Alex: Right, it's a giant like Bay Watch coast.
John: Which are both very different places anyway. So it is rural, Humboldt County is about the size of the state of Connecticut, I think. It's got a population of about 130,000-140,000, somewhere in there. The main population areas are around Eureka which is where Hospice of Humboldt is based. There are three or four towns that are probably 80% of the population; Eureka, Arcata, McKinleyville and Fortuna. The economy used to be based on fishing and logging, and both those industries are pretty much down the tube. It's a pretty economically depressed area. I think the major employers are the feds, the Federal Government, and the State Government. Healthcare is a big employer in the area too.
Eric: With your nearly two decades of experience now during Hospice in a more rural county, what do you think is unique about providing hospice type care?
John: To a rural county?
Eric: To a rural county.
John: I've never done it in the city so ...
Eric: Well, one thing's unique, you're not in the city, ok!
John: Right. I think it sort of has to do with the kind of socioeconomic status of most rural counties. It's just not very good. So the kinds of resources people in the community don't have the kinds of resources and then isn't even necessarily available the same kinds of resources for health care. So, for example, nursing homes; in Humboldt County, there are four nursing homes. I'm not sure how many beds that is, but it's not very many. It's not enough to meet the need. It's a perennial problem, there is a perennial shortage of beds. I think there are issues with the quality of care, that's not to say anything bad about the people that are there doing it, it's that they don't have enough resources to do what they are there to be doing.
Eric: I can also imagine one of the challenges in providing any home based service like hospice in rural areas, you said that the-
Eric: Well, caregivers, and just it's the size of Connecticut. So if you're located in one part of Connecticut and you've got to drive to the other part of Connecticut to give the care, how do you guys deal with just the sheer size of Humboldt county?
John: Well, by Medicare regulation, it's a 50-mile radius. So we see people who are about within an hour of our office which is located in Eureka, that takes in that whole four or five city area, that is the large majority of the population. But it does exclude some of it, and there is a volunteer hospice in Garberville that picks up some of Southern Humboldt, but that's not as robust a service as Hospice of Humboldt either because it's a volunteer hospice. So there are people who are out of the catchment area who could, oftentimes they'll move in with some family somewhere in the catchment area or we have opened up a hospice house that has some residential beds in it. Also those require a certain amount of resources to be in just because that's the reality of things. Residential care is not part of the Medicare benefit.
Alex: Tell us more about this hospice house and how that came to be?
John: Well, that came to be as a result of actually one of our former executive directors who passed away about a year ago, very big on the idea of creating a hospice house. So we're not for profit, we have a local community board that oversees the operation and she basically got the board backing, creating a hospice house. We did a fundraising campaign which was quite successful, and now the place is built. We opened the hospice house about 2 years ago. It was planned for 12 beds, which is probably a bit much given our size and location. It's currently staffed for six and I don't know what our average daily census in the hospice house is. I know when I left Humboldt the day before yesterday there were five inpatients, three of those were residential and two of those were GIPs.
We use it for that level of care, GIP level of care, we use it for respite. In our area we do quite a bit of respite just because the caregiver issue is such a big deal. Even if you have the money, it's hard to find caregivers. It's just one of the factors of being in a rural area.
Eric: So, tell me, what you think is unique around caregivers in rural areas?
John: I think it's just a matter of population and training. We have a hard time getting staff, we always have openings for RNs, for home health aides. It's just for whatever reason, there's competition I guess, there's not that large of a skilled workforce to draw from.
Eric: I can imagine the geography too, is that the caregivers are much more spread out?
John: Yeah, yeah. We are a spread out area. It's just a big, but not densely populated at all area.
Alex: So you were saying that socioeconomically depressed and that there's real lack of skilled professional caregivers, and also that many of the patients you care for are somewhat isolated socially. Is that true or don't have a lot of robust family and friend caregiver support?
John: Yeah, it varies. I mean, the large majority of our clientele are cared for by family members. There are a high percentage of the social work and time that goes into looking for resources is for a relatively small percentage of the census.
Anne: In addition to there being limited caregiving resources where you guys practice, are you noticing there's other resources that feel limited or other ways that you wish there could be ... there's more challenges in addition to caregiving support?
John: I think that's the big one. If I could wave a magic wand and solve one problem that would be it.
Eric: How about we break out that magic wand again, and let's say that you have this magic wand and you can change anything regarding Medicare payments around hospice. Specifically to help rural hospices, do you have a couple of things that you would do?
John: The silliest thing about the Medicare benefit is that it's tied to not seeking care for whatever the hospice diagnoses are, and so it gets into trouble around certain areas. If that went away, then hospice would be able to concentrate on truly palliative care. My understanding from the time when the benefit was established which was the early 80s, wasn't it? I think it was, what was then the National Hospice Association is now NHPCO, was strongly in favor of not requiring that people give up seeking treatment for any hospice related diagnoses, but that the Congress in its wisdom saw that they needed to do that for some reason.
Eric: Well, they don't really have to give it up, they just have to figure out how to fund it, right?
John: Right. Yeah, right. Which is you know-
Eric: Parsing words out probably.
Alex: Are you non-profit hospice?
John: We are and have been from the start.
Alex: It's really hard for the smaller and the non-profit hospices to be able to afford some of those really expensive treatments for the hospice qualifying diagnosis.
John: Right. But we will do things like I mean, I've done plenty of radiation that's truly palliative on hospice patients.
Eric: Is it easy to get that?
John: Yeah, it is actually because I know the radiation oncologist and I call him up.
Alex: That's the nice thing about being a smaller community.
John: Right. Yeah.
Alex: You know people.
John: Yeah, that is kind of how things get done.
Eric: Yeah. I can also imagine from a efficiency standpoint, because I'm trying to think of many for profit hospices in rural parts of America.
John: I don't know that you'll find them.
Eric: So there must be a reason, right?
Alex: I think there are some. I think there's ... is it four seasons in rural Kentucky? I think that, rural Appalachia I believe? That's a for profit hospice, rather large, covers a huge area.
Eric: But you can imagine, if you are interested in efficiencies like focusing on a large urban environment, because you can just see more patients in one day than you can when you have to spend an hour driving from one place to the next.
John: Right, you know when I do home visits I spend a lot of time in the car.
Eric: Listening to podcasts.
John: Yeah, exactly.
Alex: Good. I wanted to ask, we just completed a podcast with Bernie Lo about physician aid in dying, and he pointed out that different organizations have taken different approaches to the law, and hospice organizations in particular have adopted varying approaches. What has been the approach for your Hospice in Humboldt?
John: We support people but we don't prescribe or administer any of the aided dying drugs. And basically, I think because of pharmacy regulations people cannot take advantage of that in the Hospice House. The whole thing is on hold right now because of the-
Eric: That just got changed, I think that it’s back on as of like a week ago or two weeks ago, but it’s as hifting environment constantly.
Alex: Can you tell us about the decision not to prescribe but to be supportive? And what does that mean to be supportive?
John: Well, what we did was, as it was clear that this was going to be coming and because we knew it was coming for like a year before it was even legal. So, we went through a process, and I think part of the philosophy of hospice is that we're not so much concerned with hastening death or prolonging life, we're concerned with what's going on right now and making people be as comfortable as they can be in all aspects of life. I've got to say, I was personally opposed to the aided dying legislation just because as a hospice doc, my concern is that ... I guess people say you can't give up, you can't join hospice, you can't give up like that, but actually this is really much more of a giving up in my mind than hospice is. And I recognize and respect that other people have different points of view. And so we, the Hospice of Humboldt, basically we got a focus group of employees together from various positions administrative, clinical, social work, and figured out what we wanted the policy to be. I was surprised that most people had a very similar position to me that wait, we don't want to be seen as, this is what we do, because it's not. And it's really almost kind of a distraction from what we do. But that being said, obviously other people have points of view and that this is something that clearly there is interest in, and people certainly want to have the right to be able to make these decisions, and it's the law. So, we won't prevent people from getting it, we'll inform people of what the requirements are. In Humboldt County, I don't know how many physicians will actually prescribe it. I know that some have, it's a rural county, there is a shortage of primary care docs there, and how many people are actually doing this? I don't know. I know that since the law is in effect, we've had I think four or five that have obtained the lethal prescription. As far as I know, only one of them is actually taken advantage of that.
Eric: That sounds about right with other national numbers.
Eric: We talked about another one very unique thing that Humboldt is very much known for is marijuana.
Alex: Do you have better marijuana for your patients who want medicinal marijuana?
Eric: Or what’s your hospice organization's like stance or thoughts, or do you use it more freely like ... just want to hear kind of your thoughts on marijuana and hospice.
John: Well, I think it can be helpful. Yeah, I think it can be helpful for the nausea thing. I think it can be helpful for the appetite thing. I don't prescribe it. I sign a letter that says I think this person could benefit from the use of cannabis, and one of the local dispensaries, if they have any available for free, they'll give it for free to hospice patients. They don't always have it available, but they'll certainly set them up. I actually wonder, if you go to these dispensaries they have all this ones, there's so much CBD and less THC and this one is good for nausea and this one is ... I have no idea if any of that's true. I don't know how you would like go about figuring that out.
Eric: GeriPal taste test?
Alex: Stay tuned for our next podcast.
Anne: Just prolonged dead air.
John: I mean just my point of view, yeah, I think it can be effective and I don't see any reason to not use it. If somebody wishes to or is open to that. Last at AAHPM, last spring Ira Byock did a presentation on psychedelics. That was a really, really interesting thing and the use of psychedelics in people who just had lost all hope or reason to go on and they were like reporting some pretty fascinating results. It really sparked my interest. Ira, as you may know did a opinion piece in the LA Times before Governor Brown signed the death, end of life options act, opposing it.
Eric: Yeah, he was a strong opponent.
John: Strong opponent, yeah. And he got a lot of feedback from that, but I think what he was suggesting with the psychedelics, is the use of psychedelics that would lessen people's desire to take advantage of that act.
Alex: Well, that's an interesting hypothesis.
Alex: There is interest in funding research in psychedelics, I think actually one of our palliative care fellows is interested in doing research, and there's a foundation in San Francisco interested in funding more research in that area.
Anne: We've talked a lot about some of the challenges that your team faces in delivering care and I'm curious to know what do you see as the strengths of the services you provide or the community that you serve?
John: I am so impressed with the people that I work with at hospice. Just the degree of compassion, the degree of camaraderie of working together, the amount of laughing that goes on just in the office when people are talking. It's just a really great group. I really can't imagine working anywhere else. I mean, I work part time for the VA, but it's the same kind of thing there too. It's just people who are truly good, truly care and go out every day and make a real difference.
Eric: Last question just to follow up on Anne Kelly, because one of the things is that, hopefully we have some trainees listening too, and we always talk about workforce shortages in hospice and palliative medicine, which is only magnified in rural counties. When you think about where you live, what's similar to working in hospice? What's one thing that you love about where you live?
John: The sort of natural environment of Humboldt is such an incredibly beautiful place.
Eric: Why should people think about doing medicine in more rural America?
John: One, because there's a need. Two, I think it's relatively easy to make a big difference. I really like what I do, I really like doing it where I'm doing it. And I just get a lot of satisfaction out of it, and I love living where I live, it's just a really great place to live from my point of view. The kinds of things that keep people away from rural areas, I don't know because I always been attracted to them. I like to come to the city but I'm happy living where I am.
Eric: Great. Well, I want to really thank you for joining us and talking with us today. A big thank you to Anne Kelly, who has been a repeat host now for joining us. How about before we end, we get a little bit more of the song.
Alex: A little bit more. [Singing]
And thank you to our listeners. That's the end of this GeriPal podcast, we look forward to you tuning in next week, where we will discuss something else.
Anne: That's a wrap.