| Theme 1: Most patient consideration of values, goals, and preferences occurred outside outpatient visits |
“And one of the [hospitalists] came in and told my wife that I was real sick. And he didn’t think I was going to still be alive. So, she told me. And I told her if that happens, let me go. I don’t want the kids to see me in the hospital with all of the stuff…. It probably hurt her, but I told her I don’t want to live like a vegetable…. I just told them I don’t want to be like a burden to my family to have to go see me. And I can’t talk to them. I can’t do nothing for them.” (Undergoing evaluation for transplant) “I already know that it just happens, you have a life, they have lives. And I start to wonder if I should just in the future put me somewhere so someone can take care of me, so that I’m not a burden, and [my husband] always says no. He says, ‘our culture, we take care of our elders, and if you have to have them on hospice at home, then whatever; that’s the way it is.’ He says we’re going to do like we did with his parents and my mom and my father and they all died in hospice at home, and I just wonder if that’s how I’m going to go, or if I’m going to go another way? Different options.” (Wait-listed for transplant)
|
“It’s probably a terrible answer. I assume that [finding the decision maker] is somebody else’s job. When they go into the hospital, I’m sure someone asks them on admission or something. I don’t know.” (Hepatology nurse practitioner) “The main thing that I like to focus on is ‘What is your plan… in the event that we have a medical emergency and decisions need to be made?’ ‘Who is my surrogate decision maker that I’m going to go to?’ I’ll give them the scenario; let’s say, I’m in the ICU and I don’t know who to call. That would be very difficult for our team. That leads me to discuss advance care planning in terms of the advance directive. In terms of really discussing in detail what kind of treatments you would want, I leave that up to the physicians to do. We’re given about this much time. I joke with patients; I’m given 45 minutes to discuss 2 hours worth of material. (Social worker) “No, I don’t touch [those conversations]. Unless [the patients] are in the hospital or at the last moment, but not before. I think some [of them] have advance directives.” (Hepatologist)
|
| Theme 2: Optimistic attitudes from transplant teams hindered the discussions about dying |
“They’re always really optimistic and say, ‘don’t worry.’ Of course a lot of people don’t make it up there, a lot of people do, but they told me to go to a support group; they gave me a pamphlet to go to a support group. There’s a lot of people on the list and a lot of people postoperative, so maybe we can get a little support and a little bit of a rainbow or something…. I think about it a lot, because, as I said, I don’t see myself ever making it to the top of the list for whatever the reason is. I might just not be thinking positively, but I don’t see it.” (Wait-listed for transplant) “This is what they told me. This is a process. Usually what happens if they list me, they're pretty positive they probably will, if a liver becomes available, they have to fly to a certain location, they have to look at the liver, then they have to fly the liver back, then I have to be available 24/7 by my phone…. I believe it will happen, and that's why I’ve been waiting, and we’ll see.” (Undergoing evaluation for transplant)
|
“So, I’ve had several experiences where there’s been a battle—how can I say this? I can think of at least 3 different situations where the patients have been saying, ‘I’m dying, I’m dying,’ and [the clinician] is like, ‘No, you’re not there yet,’ and eventually, they get to the point [where] the patient is like, ‘I know I’m dying. I don’t want to live like this. This is not the kind of life I want to live. I’m done.’ But [the clinician] says, ‘No, not yet. I’m not ready to say that. There are still these options.’” (Social worker) “Mostly, I prepare them for what will be the next step. So, for example... if it’s a question of obesity, I’ll say, ‘If we decide not to go forward with the transplant, we’ll continue to follow you in our hepatology clinic, and we’ll see you probably in about a month, and we’ll track your weight loss as part of those visits.’ …So, a more complex medical question, heart attack or something like a bad coronary risk, I would probably say something very similar—that ‘If you aren’t approved, you’ll keep following up with our hepatology team.’ So, I don’t tell them a lot of details. Just who’s going to contact them.” (Hepatobiliary surgeon)
|
| Theme 3: Clinicians primarily discussed death as a strategy for encouraging behavioral change |
“Well, the doctor came to me and said to me…that my blood counts and whatever, whatever were not favorable. And he said, ‘The only hope you have is a liver transplant.’ That's when it hit me. I'd rather live than die, so that was it.” (Undergoing evaluation for transplant) “Then this last January, the doctor said…‘if you have anything ever to drink, you’re going to die. You’re a lovely person, and I don’t want to see that happen.’ I’m not going to say that was a huge wake-up call, but I know that I hurt my body. I just was given words of wisdom to say you need to make a choice. Live or die, basically. I’m choosing to live.” (Too early for transplant evaluation)
|
Interviewer: “Do you have conversations with them about what would happen if they weren’t [getting] a transplant?” “Yeah, tell them they’re going to die without it.” (Hepatologist) “We are very honest with all of them. The people that end up usually not being transplant candidates are drinkers, and [we’d] say, ‘You’re going to die without a liver’ or ‘You’re going to die if you don’t stop drinking.’ We’re very straightforward about it.” (Hepatologist)
|
| Theme 4: Transplant teams avoided discussing nonaggressive treatment options with patients |
“No, I don't believe we have had that conversation…I've wondered about that once or twice. I think that doctors…I've actually convinced myself that they're not that concerned with that part of their practice…I think it would be very good to have…I believe they should bring it up, and go over the conditions which may call for life-saving operations, procedures, what things would happen. Whether they are familiar with cirrhosis, or cirrhosis patients, or patients with similar maladies…they should bring it up.” (Not wait-listed because of comorbidities)
|
“Some doctors want to put patients on hospice because with hospice, you get all these other services that the patient maybe needs. But you can’t both be on hospice and be listed. You can’t say I want the minimal done to save my life… I’m doing everything we possibly can to save your life and if you’re wanting to be allowed to go, then transplant is not something that’s for you.” (Transplant coordinator)
|
| Theme 5: Surrogate decision makers were unprepared for end-of-life decision-making |
|
“There are only [a] handful of people that say they want to go home, and then when you say, ‘Okay, you want to go home, this is what it’s going to kind of look like,’ a lot of people actually end up backing out of that situation and they end up doing inpatient hospice instead of outpatient hospice….That nonaggressive care at home still seems daunting. I actually sometimes picture this, and it looks like it’s going to be a disaster; they live in a house with 5 other people, 3 of them are under the age of 12, so you’re just going to bring dad home to die, and he’s going to die, he’s going to bleed, he’s going to bleed to death, it’s going to be a scene, how is that going to happen? He’s going to fall into a coma. Oftentimes, it doesn’t even seem like a situation you really want to push for.” (Critical care physician)
|
