Table 2.
Identified themes and subthemes with representative quotations
Theme/Subtheme | Representative Quotations |
---|---|
Theme 1: Existential distress is a common experience that is frequently insufficiently treated within the current treatment framework | |
Existential distress is understood as a painful disruption to structures of meaning that frequently occurs in response to impending death and change |
“[S]piritual or existential distress – which I look at as a break with your normal way of understanding yourself and the world; and relationship to the world; and the relationship, it could be to the transcendent, it could be to unity consciousness, it could be to God, but doesn’t have to be.” (S13, chaplain) |
“I would say most of my patients, in some way or another, are dealing with some kind of existential issues. Some are more distressed than others, but since most are facing mortality, these questions of an existential nature certainly come up, when reviewing one’s life, or when trying to think of what’s most important now, and how to continue to live a life that has meaning and purpose when facing mortality… I guess I become aware of it when patients are expressing a fear of death, a sense of…a sense of despair about their life, a loss of meaning, a loss of purpose. So it’s that kind of combination of despair, some hopelessness, uncertainty and fear of, particularly about, death that I consider as falling into that existential realm.” (S07, social worker/psychologist) | |
“For someone who has had a diagnosis of Parkinson’s, or ALS, or cancer, or late-stage diabetes, or, you know, some of these god-awful things we’re dealing with, you know, the whole – the rug has been pulled out from under their lives, and now they’re facing financial changes and family changes and it’s just overwhelming. And that’s a total existential crisis. They’ve lost their vocation, they’re losing their mobility. It’s like ‘who am I?’” (S08, chaplain) | |
“I think of it as somewhere between spiritual, meaning, kind of like larger distress issues. Like, separate from agitation, but you know spiritual, meaning, familial, kind of all wrapped into one. Separate from depression. Separate from agitation and delirium. But sometimes certainly contributing to all of the above.” (S01, physician) | |
Existential distress frequently centers on relationships and is exacerbated by interpersonal trauma and isolation |
“So, like patients who have pain crises every time their spouse is there, or… thinking about disruptive relationships with grown children: there’s certain topics that come up as patients near end of life, like regrets about leaving a family, or not mending ties.” (S01, physician) |
“I would say patients who are unfriended, who might not have family or friends, or have other, you know, other core – whether a psychiatric diagnosis, or they have other types of trauma in their life: that might add an additional layer of complexity.” (S14, nurse practitioner) | |
“For example, is there any unfinished business in their life? Is there some forgiveness that needs to be asked for? Do they need to forgive somebody else, is there a ruptured relationship from their past that needs to have a sense of closure, re-communion?” (S06, physician) | |
“I used to work at the VA. I was at the VA for 5 years on their inpatient skilled nursing and palliative care team. And that, I felt like, was a different beast, where more than like 50%, probably more on the order of 75%, of those guys had some element of existential suffering. And those life experiences are very different. The population we work with in Palo Alto tends to be, you know, well educated; they have resources at their disposal. And it’s not to say that those things are protective from life experience, but they seem – they can help, in terms of the things that you’re sort of surrounded with, and your access to technology, right – to be able to like connect with your friends and family across the country if you’re alone – or having a caregiver who can help provide just, like, a touch every day.” (S16, nurse practitioner) | |
Existential distress often extends to those caring for the patient with identified mortality |
“Families dealing with a lot of conflict, a lot of guilt over, a lot of caregiver burden and compassion fatigue: they also go through existential distress around broken dreams, around, uh, “I’ve lost my career. I never thought I was going to spend 10 years of my life doing this. Who am I now that they’re dying? I’m not ready to let them die because I’ve been a caregiver now for 12 years; what else am I going to do? I’m scared, I don’t know.” So it’s a family system, uh, journey, and our unit of care is the patient and family.” (S08, chaplain) |
“I think you have to learn the skill of addressing your own existential distress, because it does pop up… it’s important not to lose yourself in the work and in helping other people with their distress, because if you’re not, if you don’t find out your own way of coping, you will absorb it until you end up being the one with the distress.” (S15, social worker/psychologist) | |
“[I]n the hospital setting, and in the general medical setting, we are horrible – oh wait, no, that’s not true – we are wonderful, we are starting to really recognize it, over and over again. Which actually creates distress because we can’t treat it. But we are just at the tip of the iceberg about how do we, transdisciplinarily, treat and address existential distress. Which includes our own existential distress that we can’t actually make it better.” (S13, chaplain) | |
Once identified, existential distress can be treated in many cases, though heavily dependent upon staffing and other institutional resources |
“Well, I think we could always use more funding for additional staff and things like that… I mean, I’m within [dedicated cancer hospital], so you know we have more resources [here], yeah. More comprehensive like integrated medicine services, we have a dedicated chaplain. So, you know, compared to [general hospital], our patients are probably more supported in terms of resources for existential distress.” (S01, physician) |
“I work at a pretty impoverished small cancer center, and so we don’t have a lot of the great resources that giant, well-funded places that I’ve been before, like Dana-Farber where you can give reiki or acupuncture or Dignity Therapy and all these great things that are just wonderful because there’s a lot of resources and money. And we just don’t have any of that.” (S05, physician) | |
“Ideally I think that I could probably – we could probably – be doing a bunch more, but we have a small team with limited resources, I guess is the bottom line.” (S10, social worker/psychologist) | |
Cases of challenging and refractory existential distress are common |
“…other patients I think might not, um, might not have those supports or might not respond as well to the, you know, the quote-unquote treatments. For example, I think patients that, you know are typically younger: you know, when I see patients that are in their 30s or early 40s, you know with young kids, those patients that I feel like are more difficult to support, who might have, you know, distress that is not as easily addressed by our team” (S14, nurse practitioner) |
“I mean those are some of the other medications that we can use. Um, it doesn’t really help. I don’t know, I mean everybody’s different. I mean, I think sometimes existential distress can be a symptom of depression – I would look at it, um – mainly because we don’t have anything that can – besides treating depression or anxiety, and besides counseling with chaplaincy and social work and, you know, the physician themselves. Like, sometimes, if there’s still distress on top of all that, there’s nothing else – its hard – I don’t know if there’s any, I can’t think of anything else off the top of my head that we can truly offer somebody.” (S12, physician) | |
“There are refractory cases where the distress is really significant and… doesn’t respond to these things like medications and talk therapy and a space to discuss it. I think there are certain cases where something else needs to be, you know, something else needs to be used… there are a number of cases where things are pretty refractory and not getting better with the standard treatment.” (S03, physician) | |
Theme 2: Palliative care providers ultimately see existential distress as a psychosocial-spiritual problem that evades medicalized approaches | |
Treatment of existential distress is de-emphasized within medical training and at times conflicts with standard medical culture |
“As a resident, oncology fellow, no. I don’t think I really learned a whole lot about existential distress, moral distress, spiritual distress until I was a palliative fellow.” (S01, physician) |
“That’s another barrier for you: they don’t feel comfortable when… they’re worried about uncovering the stress because they don’t know really what to do with it other than to refer to a social worker or someone else.” (S03, physician) | |
“I think existential distress was what I felt most ill-equipped to handle. You know, that’s what we talk about least. And, you know, we have a solution for everything else: you have a medication for this and a medication for that.” (S11, nurse practitioner) | |
“I think the lesson that I’ve learned about existential distress is that I always feel a little helpless in the face of it, because I don’t quite know how to fix it, or, you know I’m, even as a palliative care doc I’m like “ooh, there’s pain, I know what to do, I know what to do that will make that better!” And existential distress is much more murky than that.” (S05, physician) | |
Primary treatment of existential distress is through meaning-focused approaches and interpersonal connection |
“The first thing that I’m going to recommend is actually a way to, um, for the patient to be able to express themselves and talk… Some of that really is us allowing the patient to kind of have a counseling and talking through those emotions, um, and I think that, honestly, being able to process is the best way to really deal with your existential stress because there’s no right – there’s no pill that I can prescribe that’s going to change what you’re going through. We have to see what your concerns are and then try to help reframe, if that makes sense.” (S09, physician) |
“But I think just like identifying it and naming it, being an empathic presence is helpful, and then kind of seeing what the patient feels that they need or what they may want. Because sometimes it’s just being heard, sometimes it’s like, “I want to, like, reconcile with my son now!” You know what I mean? Sometimes it’s like “I just want to talk about it, it’s been really hard.” (S01, physician) | |
“My role. Yeah. So, I think it’s, you know just helping people just talk it through and really being fully present to listen to them. Um, and listen to the needs that are being expressed underneath and helping them sort of unpack it. And then helping them – and any chaplain will say this – having them come up with their own understanding and meaning around it.” (S17, chaplain) | |
Theme 3: Palliative care providers believe PAT hold promise for treating existential distress but that a stronger evidence base is needed | |
PAT is a new possibility for healing |
“I would say that if we are encountering a patient that is having, um, a lot of existential distress that seems to be unresponsive to our mainstream palliative care skills, in terms of like when we’re initially working through goals of care and building a rapport and relationship with them, um you know, if we rule out, for example, also depression or anxiety, other formal psychiatric illnesses – you know, because I wouldn’t want another psychiatric illness to go untreated – and so if we think it’s truly existential distress that is being unresponsive to our mainstream work within palliative care, I would love to have, um, a psycho-oncologist or, or a psychiatrist that’s available that, or that would help provide psilocybin for patients that we thought might be candidates.” (S06, physician) |
“So, for example, in California we’ve got the end of life option act where a patient can actually – as long as there’s a prognosis of 6 months or less – a patient can actually ask, you know, for the medications to, to end their own lives... So I could see this fitting in as a sort of a parallel offering, that, you know, if somebody is having extreme distress, and they don’t want to end their own life but they want to end that distress, and nothing else is working, that they should be able to say ‘yes, that’s, that’s a tool in your toolbox that I would be interested in trying.’” (S15, social worker/psychologist) | |
“Sometimes the tools we have work well and people get there, but for [the rest] … this gives people the opportunity to look through a different lens, and to resolve some fears, and to figure out what it is – you know, kind of slow things down to figure out what it is that gives them meaning.” (S11, nurse practitioner) | |
Stigma of psychedelics is still evident |
“I think I would worry about like the stigma of – I would just need, I would need to develop a pattern of how to introduce it to people. That would be my own work, and how I’m going to describe this to people. Because I can imagine that it would take a lot of folks who haven’t maybe read about it and you know are not maybe very medical, may be very health illiterate, and I could imagine them being like ‘Wait, what do you want me to do?’ and like ‘No way, that’s crazy, you sound like a crazy person.’ So I’d need to figure out how to talk about it.” (S05, physician) |
“I know some providers would probably be reluctant, because we don’t want to be known as ‘the psychedelic doctor’ – you know what I mean? Even with medical marijuana I think people feel concerned that we’re going to be seen as, like, the marijuana clinic or something like that – at least, here, and in some institutions.” (S01, physician) | |
“I think there’s some people that just are afraid. You know, they’re afraid of side effects, and they’re afraid of like going down that sort of dark alley and not being able to come back from it.” (S15, social worker/psychologist) | |
“You know then there’s the question of substance use, too, I guess, right? How much of this would be a… a continuation or lead to an escalation of substance abuse issues for someone who had a history of very poorly controlled substance use?” (S07, social worker/psychologist) | |
Caution and safety are paramount |
“And then the other thing is it really does need: the people who are in the studies, but also who’d be using this in the future, they need to have a holding environment afterward, and some really skilled guidance – not just a couple of office appointments – to integrate, you know, what they’re exposed to inside.” (S13, chaplain) |
“My patients are all stressed, depressed, anxious. Some percentage have trauma histories, drug and alcohol histories, social support issues, so they’re fragile; many of them are pretty fragile. So I guess that’s where some of my reservations come from. I would certainly not want to introduce something that could, you know, further undermine their fragile psychological wellbeing. It’s good to know that the subjects have been rigorously screened, or psychologically screened for these things – that would be really appropriate moving forward.” (S07, social worker/psychologist) | |
“I think that we also need to think about the guardrails, um, to place around agents that have this kind of potency to ensure that it’s the – that it’s properly trained people that are providing it in a safe setting. And that it’s, and that the patient is receiving longitudinal care from people that are attentive to existential distress, so that the patient is embedded within a psychologically-informed group like a palliative care group, you know, receiving ongoing care through palliative care or ongoing care through psycho-oncology.” (S06, physician) | |
Further evidence and information sharing are needed before palliative providers can endorse PAT |
“I guess I would like to – it would be really great to see more research, with the data, I guess, would really help people like me feel more comfortable in its use, broader use. I think there should be more research, I think that would – that’s a good thing.” (S07, social worker/psychologist) |
[I]t would be wonderful if we could be trained, um, maybe a little bit more specifically – and it’s not to say that every single provider, necessarily, has to be trained, but, you know, like having a couple of specialists, right, on the teams that can help – either help with some of the decision-making, um, or helping to gauge, you know, who, who would be, who would this best be appropriate for. (S16, nurse practitioner) | |
“So I think I would tend to try, you know, the, the sort of main-line, mainstream therapies first, um, and only go to the psychedelic if nothing else was working.” (S15, social worker/psychologist) | |
Theme 4: Because PAT do not currently fit existing models of existential distress treatment, barriers remain | |
There is no clear narrative of when, where, and for whom PAT should be offered |
“I could see it for people who have a great deal of anxiety – and people who actually are bringing a lot of their own, um, psychiatric issues into play and into this: I think it could really help, help them through a lot of different – in a lot of different ways.” (S19, social worker/psychologist) |
“I’ve had some patients that have had such trauma in their lives and some when they were young people, and they’ve never been able to get past that. And then, you know, when you get into an end of life situation everything gets heightened and it pulls back all these old painful memories and they can blow up out of proportion. And I think it is, it needs extreme measures. And from what I’ve read the psychedelic medication is possibly the only thing that would really help.” (S15, social worker/psychologist) | |
“[The ideal patient for PAT is] someone who is relatively high-functioning, intelligent, verbal, good support system – good history of psychological functioning – has maybe had some experience with psychedelics in the past, so they have a sense of what to expect – had a positive experience in the past…someone with those general characteristics.” (S07, social worker/psychologist) | |
“I can think of at least one person who I wish I could [offer PAT], um, but again unfortunately that patient has some – has contraindications that I wouldn’t be able to do it with. I wish that I could do it for that patient. So this has been someone who I’ve been working really hard with, and, um yeah, a lot of existential distress…But, again, there’s a mental health history that I’m unable to do so.” (S09, physician) | |
Appeal of and access to PAT are not universal and cultural barriers remain |
“[T]here’s some people, I know for sure, there’s some people whose faith would say, ‘You are opening the door to evil. Like anything could walk right in then when you allow your mind to go like that with a chemical. It could be good, it could be angelic, it could be God, it could be positive. It could also be evil. And you know, like, there’s no way to know.’ There’s definitely that strain of faith.” (S17, chaplain) |
“But it’s hard to imagine like an institution who would need to spend 6 h with one like one patient. That would be great, I’d love that, I just can’t envision it happening in the real world.” (S05, physician) | |
“I’m not sure here in the Deep South if you would have the same receptivity as you might in other, um, regions.” (S18, nurse practitioner) | |
“Well, keep in mind I’m in New York City, so I’m in a big urban center, and it really has to do with my demographics. My younger patients I’d say – like 45 and under – I’d say maybe, like, 40%, like they’re more interested and open. And maybe some of my, like some of my older patients – like 60s, 70s, or some of those that have had experiences, you know, when they were younger, with experimenting. But it depends on what environment I’m working in, and what community. And definitely the – different demographics are more interested: I’d say especially the younger patients.” (S11, nurse practitioner) |