This piece originally appeared in Luke O’Neil’s newsletter Welcome to Hell World, which, like Discourse Blog, is a member of the Discontents media collective. Click here to get 30 percent off a subscription to Welcome to Hell World.
God this one is depressing. Even grading on a curve for what I normally cover in here. It’s a discussion with a palliative care nurse practitioner at a hospital in New England. We talked about what the somewhat controversial practice of palliative care even is and how his job changed during the onslaught of Covid and what it feels like to be the person who has to explain to so many patients that they are going to die. Sorry my questions aren’t that great but I was busy thinking about how my father died the entire time. Not my own death though. I certainly am not preoccupied with that as I’m never going to personally die.
What exactly is palliative care?
The elevator pitch of what palliative care is is it’s specialized supportive medicine for anyone with a serious illness. Any illness that you would expect to cause a lot of symptoms or shorten somebody’s life in any way, palliative care is kind of blanket support. A lot of times it’s symptom control. If someone is undergoing chemotherapy and they have a lot of nausea or vomiting or pain, we’re the specialists who try to get those symptoms under control. The other thing we do is we have a lot of training in communication to try to get people to process what’s happening to them. As you know, and unfortunately a lot of your Hell World writing has been drawn to the hell of American healthcare, when somebody is really sick and their care gets really fractured, a lot of times the biggest problem they have is five different doctors have told them five different things and maybe they don’t really understand what’s going on.
Right. It can be extremely disorienting.
In palliative care we’re not specialists in any of those things, but we can translate it from medicine into plain English so people can process it a little better. So palliative care can be straightforward. You’re here for a chemotherapy treatment. Let’s just talk about how you’re doing. The type of care I do in a hospital, if somebody is in the hospital for serious complications or a serious illness, a lot of times multiple doctors get involved. The patient or the family just has a hard time processing what’s going on. So we talk to people about the reality of their condition. We say we’re good at addressing goals. That’s a euphemism for nobody has told this person they’re not going to survive this, so we need someone who has that training to do that.
My god. And with Covid I imagine there was a lot of that.
As we started to realize that some people were definitely not going to survive, we were the people talking to the family. We’d say this is what the options moving forward look like. And there’s always the option to do less, which gets overlooked frequently in a hospital setting.
What do you mean by that? Do less?
I think it’s probably the difference in training between medical school and nursing school. Doctors are trained to identify a diagnosis and try to fix it. Usually the nursing approach is more what does this mean for the patient or patient’s family? Rather than try to cure a disease, it’s let us maximize quality of life. To use Covid specifically, first it’s your lungs that fail. But as you’re not getting enough oxygen it’s a strain on your heart and eventually your kidneys. So we start seeing multiple organs shut down. If a doctor is going to try to save your life at all costs, maybe that means starting dialysis in somebody that already has kidney disease before they came to the hospital. Or putting someone on a ventilator even if they’ve got dementia and are probably not going to come off the ventilator. So that conversation very frequently doesn’t happen until too late. We might say your options for aggressive care are this, but there’s always the option to be less aggressive. What that means is if you understand you’re not going to survive we can at least make sure you’re comfortable. That you don’t have pain. You don’t have anxiety. We can let you die peacefully. End of life care is supposed to be a pretty narrow part of what we do in palliative care, under that big umbrella of supportive medicine, but in the time of Covid it was almost exclusively what we were doing in the hospital. Helping families cope with taking somebody off a ventilator for example.
How are you emotionally able to do that? Did you go home and cry every night after work for a long time? Do you have to have a certain disposition to be able to do this job?
You have to have a certain disposition. To put it frankly, when you see a lot of bad deaths, when you’re able to help someone have a good death that’s very gratifying and fulfilling. I realized in the last month or so that a lot of surviving in palliative care is embracing dark humor. We support each other a lot over the awful things we see and we kind of laugh it off a little bit. But when you’re seeing that type of tragedy over and over again every day it certainly wears on you. There’s nothing super special about us as people to be able to tolerate that and I think a lot of us are really struggling… I think part of my own personal processing is being more honest about, yeah, this type of shit sucks. Your writing about the Hell World of medicine… I think the more we talk about it, the easier it is for us to process.
How long have you been doing this?
About two years. Before that I worked in oncology, so dedicated cancer treatment, which is a pretty common transition that providers do. Good nursing care and oncology care focus on symptoms. A lot of it is honesty in communication. So you start to see the good it can do. One of the trite sayings we have is in palliative care we do nothing but we do it very well. So we’re not offering somebody a really invasive or aggressive chemotherapy that’s going to make them feel like crap if we know they’re not going to survive. We say let’s focus on your pain control if you want. One of the interesting things that is born out in data, and one of the reasons palliative care is getting more accepted now, is that a lot of people live longer when they have palliative care on board. It’s a little hard to wrap your head around that if we’re doing less medical interventions people do better. But it is pretty consistent across a lot of serious illnesses that just having somebody to talk to, having someone ask how’s your pain, are you constipated, are you eating… Not only do people feel better and report a better quality of life, but there’s actually improved survival. So there’s something kind of borderline magical or mystical about not being so focused on medicine that people seem to do better.
Not sure it’s scientific, but just having somebody that seems to give a shit about you around I would imagine improves people’s health, certainly their mental health.
Right. As you’ve probably seen, I think a lot of doctors and nurses have that desire in their heart to be there for somebody. But just the strain on their time and the expectations about the number of people they have to see in a ten hour day it just doesn’t allow for it. These conversations can’t happen in a ten minute visit with a doctor, they take an hour, two hours, days. Time is a resource that is extremely precious, especially in a hospital setting. You have to have a supportive administration for successful palliative care. The amount I charge barely covers my salary, but ends up saving the hospital money long term. Think about it like this: I took the time to talk to this guy. He doesn’t want to be intubated, he just wants go home. If that person goes home instead of the ICU for ten days, then the hospital saves a quarter million dollars in invasive procedures they’re not going to be reimbursed for. So if you have good administrative support to acknowledge that not doing things is not only better for the patients, but could save you money in a hospital setting..
Wait couldn’t that be abused for evil in terms of cost cutting?
Yeah. There’s a fine line. There’s a little bit of a reputation that palliative care are the people that come in to try to talk you out of doing anything. If the motivation was just trying to save money then obviously that would be evil and unacceptable. But the way I always introduce myself, after asking about their pain and anxiety, is asking if they understand their medical condition, what treatments are being offered. If people don’t understand what’s going on I don’t move forward with any talk about the option to do less. Then the next step is getting all the doctors in the room at the same time to explain what’s going on, rather than just saying you really shouldn’t go to the ICU because you’re not going to survive anyway. Making that jump isn’t ethical and also doesn’t succeed. But if we can get to the point where the person understands what they’re up against… For example, say cancer is going to kill someone, and they told me they hate coming to the hospital, and the most important thing to them is to be able to go home and play another round of golf, and that every time they go to chemotherapy they’re too weak to go play golf that day. If we can just have an honest discussion about what’s most important to them a lot of times people will elect to pursue less aggressive care. But it’s always what’s most important to you the patient.
It’s maybe 50/50. A lot of times people will say I hear what you’re saying but it’s important for me that you do absolutely everything possible to keep me alive as long as possible for even a miracle chance of cure and recovery. If someone says that I never object or talk them out of it. We have a reputation of being the grim reaper trying to talk you out of saving your life, when really it’s trying to talk about what exactly treatment would look like for you and whether or not that’s something you want to go through.
What was your hospital’s experience with Covid? Were you overwhelmed?
We were in the epicenter and had a lot of cases really quickly before we knew anything about the disease. The harrowing thing was, like I said, we’re doing the translating between what the doctor is saying into English, and in the early days of Covid a lot of the doctors, incredibly skilled physicians that deal with intense respiratory diseases and infectious diseases, were kind of looking at me, like, I have no idea what’s going on and I don’t know how to treat this. So that was really terrifying. We did get overwhelmed in that we had a lot of people show up incredibly sick right away. And there was a knee jerk reaction that all these people need to be intubated until we can figure out how to treat them. Typically the ICU operates at 70% capacity dealing with things like strokes and car accidents. We have 50 beds in our ICU and suddenly we had 40 people show up that needed ICU care.
It was emotionally overwhelming, the number of alarms going off, the number of nurses crying, the number of really respected physicians not knowing what to do. Seeing a lot of people die in a short period of time. We decided since we have communications training, even though we didn’t know how to treat Covid, we knew how to talk to families about how serious it was. So early in the pandemic we called all the family members to talk to them to take that burden off the physicians and people in the ICU. It’s a hard thing as a medical provider to say to somebody we don’t know what’s happening and we don’t know how to treat this. But it kind of falls under the umbrella of the hard conversations that we have more experience with.
As it evolved we started to see common trends with how Covid was killing people. It’s more well understood now. But if you had a predisposition for high blood pressure for diabetes you were likely to have kidney failure or liver damage as your body was fighting off this awful infection, more likely to become septic. In an ICU the whole point is to support a body system that can’t support itself. A venitalltor for example is supporting somebody’s lungs, dialysis is supporting someone’s kidneys. Every system that isn’t working means it’s more likely someone won’t survive. With Covid these people were all of a sudden having four or five body systems all failing at the same time. We know once someone is in multiple system organ failure the statistics are overwhelming that someone isn’t going to survive. It was like watching a really dark play unfold.
It was our job to keep families apprised of that. Once we came to a consensus, even not knowing how to treat Covid, we knew when people were going to die. So it was our job to have that awful conversation with a family. The biggest trauma was that one of the magic weapons we have in palliative care is time. We don’t have expectations to see twenty people a day. Pre-Covid I would call someone on the phone and say it’s serious, but I’d like you to come in so we can talk about what’s going on. That opportunity to talk to someone in person, hold their hand, give them a hug, let them be at the bedside of a family member, all of that helped having hard conversations. With Covid all of sudden that was all taken away from us. We had to have these conversations by telephone only, or put an iPad in the room and do a video call. That’s when it really felt like Hell World to me.
I think there’s a public expectation, and rightfully so, that someone should not die alone. And our hands were tied. We couldn’t let people into the hospital because we knew so little about this virus. We didn’t want to put the entire state at risk. So the awful conversations were no longer just awful they were intolerable. You just can’t succeed having that kind of conversation on a video call.
I can’t imagine how horrifying it was for the patients and the families to not be able to go in and see them.
Exactly. Now that we’ve learned a little more about how the virus spreads it’s been a little easier to get people to the hospital in certain situations….With the video calls… All of the new ideas at first seemed like good ideas. But that was just a lot more traumatic than even not seeing your family for a lot of patients I would argue. When you’re on a video you can’t reach out. When you see a sick family member you want to touch them. And talk to them. And maybe they can’t hear you or the wifi signal is bad. I think it caused a lot more trauma to family members to do videos like that. From March to June of last year the worst part of the job was knowing a family member was not going to be able to be at the bedside when somebody died.
Did people become irate or try to force their way in? When I imagined it happening from time to someone I love I thought to myself fuck that I’m storming my way in there.
God bless the overworked and underpaid security officers we have at the hospital. One of the things we were given a long leash on was there’s an absolutely no visitor policy, and then in fine print, with limited exceptions. Because there are some situations where legally you cannot refuse visitors. If someone has dementia, or they are underage, or don’t have the capacity to speak for themselves, it’s illegal to refuse a visitor. As day to day experiences unfolded we found more and more situations, even in the midst of a no visitor policy, where it was reasonable and essential to allow some visitors…. It did happen sometimes where I would meet people in a coffee shop or the parking lot to try to give a medical upsate, and some said fuck that I’m coming in. It was hard to process and hard to deal with. Our goal is trying to reduce suffering. We’re certainly not trying to cause more by getting someone arrested.
What about Covid skeptics?
We had families flat out not believe us when we told them their loved one was dying of Covid. I’ve never dealt with that before, and I have to imagine toxic media coverage was part of that. Like if I’m explaining to a family that a stroke or cancer progression or heart failure is what’s happening it’s still very sad but it makes sense. Telling a family member, over the phone, that they’re going to die from this virus and there’s nothing else we can do, I had a lot of people say I don’t believe you. Or I could literally hear them typing on a computer and they’d say did you give them zinc? It looks like zinc might help. Even the early news coverage about “running out of ventilators” hurt. It was never really a risk, but it was all over the news so lots of people thought if someone’s on a ventilator doesn’t that mean they’re going to get better? When in reality if you’re on a ventilator with respiratory failure there’s very high mortality. So we also got a lot of people saying you just want them off the ventilator so you can give it to somebody else. It sucked.
What do people tend to say at the end of life? When they know they’re about to die? Are there any common themes?
It’s really unpredictable how somebody is going to react to the news. Largely people immediately have regrets. I hate to say that. It’s human nature to not expect yourself to die. As the protagonist of reality you don’t expect that you’re ever going to die or not be around. I think a lot of people, it’s trite, but they go through those stages of grief. There’s gotta be something else you can do, or what did I do wrong or what can I change. There has to be something. I think grief and regret comes early on in the process of digesting the news.
Then a lot of times it’s pretty inspiring. People try to make amends with themselves. A lot of times you see healing, or they’ll say I need to talk to my son. There are people I need to apologize to. A lot of times people deal with the news well. When that happens I sit down with them and say tell me about your life. Tell me what you did. A common thread I’ve seen is that if somebody felt loved during their life they have an easier time accepting the end of their life. It’s not a matter of success or accomplishment but if someone just feels like there was another person who cared for them when they were alive… The tragedy is that I’m not going to see my wife again, but at least I had that person caring for me the whole time.
It’s when people have unresolved fights in personal relationships, or that they’re processing that all the wealth they accumulated is not going to help extend their life…. Those are the people I would say where there’s not acceptance. There’s no peace. There’s not a good scientific analysis of this type of thing, but I think it’s 50/50 where people have a very sudden peace. Some of what we talked about earlier. It’s like if I’m going to die, thank god I don’t have to have any more blood drawn. I don’t have to do any more chemotherapy. I just want to go home and eat bacon and eggs and watch ESPN. Or I want to go for another hike. Whatever brings me joy in life. I think when people have that realization that the rest of their life isn’t going to be stressful with medical appointments, and I never dive into finances with people, but they’re not going to have another medical bill that they’re going to have to figure out how to pay…. that relief of stress is palpable and even immediate.
When people think they have some right to be alive longer, or that there are more things they need to accomplish, the reaction is existential dread and anxiety, all of which is appropriate. But another thing we do is to try to help people process it when they’re not processing it well.
Even for me this talk is depressing. I’m just thinking about my father. We were estranged for a lot of my life, then a couple years before he died he started to reach out, and we got a bit closer. I imagine he probably suspected he didn’t have too much longer and he wanted to mend fences. Eventually when he got real sick my sisters and I had to make the tough decision to let him go when he was in a coma. It just fills me with existential horror to think about. I like to think in the end he was glad we were all there, whereas we might not have been had he not tried to reach out.
I certainly never want to open wounds when I talk to people about my depressing ass job, but thanks for empathizing. I would say that in America, it’s well studied that it happens here more than other cultures, people don’t talk about the end of their life until they’re really close to it. And a lot of the most traumatic things that I deal with aren’t necessarily the medical deterioration of the patients, but when the family members get foisted into the position of making a decision like that. We talk a lot about sharing with a loved one what your wishes at the end of your life might be. Otherwise we have to default to a legal document they may or may not have prepared ahead of time. If someone hasn’t done that then the horrible decision falls on a family member. It’s part of the American Hell World that a lot of people don’t have someone they can share that trust with. But the biggest tragedies I see are having to have the conversation like your dad is very sick. He’s clearly unconscious and we can’t ask what his wishes are. We’re trying to decide whether to intubate him or start dialysis. By default we’ll do all of those things. But was he ever clear to you as his wife or son that that was something that was unacceptable to him? As you can imagine that’s not a conversation a lot of people have.