Check out our first in a series of vlogs! Join Jules Good, our Assistant Director and Policy Analyst, (and Chompers, their cockatiel, who is always eager to join in on vlog recording) to learn about involuntary withdrawal of life-sustaining medical treatment. This video also features an interview with Anita Cameron, our Director of Minority Outreach, about racial disparities in the context of this issue. CW: life-sustaining medical treatment, ableism, racism, medical discrimination.
Here is the video transcript:
– Hi there, and welcome to the very first Not Dead Yet video blog or vlog for short. My name is Jules Good. I use they/them pronouns and I’m the assistant director and policy analyst at Not Dead Yet. I’m a white person with short brown hair. I wear black hearing aids that have pink molds in them. And today I have on a red and black flannel shirt. Today, we’re covering involuntary withdrawal of life-sustaining medical treatment. First, let’s work backwards to break down exactly what that means. Life-sustaining medical treatment is what it sounds like, things a medical professional does to keep a patient alive. We can call it LSMT for short. LSMT does not cure or reverse the patient’s illness or disability, but it keeps them alive. Some examples of LSMT are mechanical ventilation and feeding tubes. Withdrawal means to take away. So, a medical professional stops giving a patient LSMT. Finally, involuntary means that something is done by force or without consent. So, to put it all together, involuntary withdrawal of life-sustaining medical treatment means that a medical professional stops providing the care measures that are keeping a patient alive without the consent of the patient, if they’re able to consent, or without the consent of someone who is assigned to make decisions on the patient’s behalf. This is a scary thing to think about. No one wants to imagine that their life will be ended on someone else’s terms. There is currently no way of knowing exactly how many people have died from involuntary withdrawal of LSMT. However, we have seen an increasing amount of court cases where the plaintiff, or the person asking the court to hear the case, is a family member or caregiver of someone who died in this way. We’ll be doing a deeper dive into some of these court cases in a future video. From analyzing these cases and the available academic literature about involuntary treatment withdrawal, it is clear that certain groups of people are at higher risk of this happening to them. However, it is difficult to do an accurate risk assessment, since the data is only coming from cases that went to court, and families of deceased people without the resources to pursue legal action are not a part of this data. But from what we have available to us, we can see that older adults, especially those with chronic conditions, make up a good number of these cases. There are also several cases involving infants who needed LSMT from birth and either had treatment withdrawn or denied entirely. The majority of cases involve patients with chronic conditions such as cancer, and a smaller percentage were patients with a sudden traumatic injury. So we can surmise that infants, older adults, and people with chronic conditions have a higher prevalence of involuntary treatment withdrawal. Another contributing factor we need to look at is patient race. The time to treatment withdrawal is longer on average for BIPOC patients than non-Hispanic white patients. Available research, while limited, finds that Black patients are less likely to request palliative care or enter hospice and more likely to want aggressive LSMT, partially due to religious and cultural preferences towards preservation of life common amongst Black Americans. Non-Hispanic Black patients are more likely to have unmet needs related to pain management and emotional support than white patients. All of these factors can increase the odds that when a BIPOC patient has LSMT withdrawn, it is documented as happening against the wishes of the patient or the family. This could also help to explain why so many involuntary withdrawal cases center around BIPOC patients. For better insight into this topic, I talked with Anita Cameron, Not Dead Yet’s director of minority outreach and a prominent activist working to help people understand how race impacts disability issues and vice versa. Thank you so much for chatting with me, Anita. You are such a valued resource and member and person on our Not Dead Yet team and in the disability justice community as a whole. And so it’s really great to be able to chat with you about this. The first question that I have for you is, several studies point to the fact that Black patients and families are less likely to request hospice care and more likely to ask for aggressive life-sustaining medical treatment. Why do you think that could be?
– It all comes down to, you know, because we know how a lotta doctors are. We know that doctors tend to devalue Black lives and tend to give up on us easier, and so, you know, we tend to request, you know, heroic measures, you know, and all of that, you know. And we have to tell them, you know, to use, you know, any methods you can, heroic measures, life-saving treatments, you know. Because I don’t think they would think to do that, especially if you’re poor, you know, especially if they kinda looked at you and decided, you know, “Well, you know, your life isn’t worth.” I mean, we’ve had that so much in the Black community that, you know, that’s why we do it, you know. I mean, I look at, and it’s kinda getting personal, I mean, my wife, who happens to be white, doesn’t want heroic measures. But me, I do, you know, because I want you to do everything possible for me, whatever it is, whatever you can think of to save my life. You know, because I’ve seen so many people who they get ill, you know, they go into coma, whatnot, they’re in coma for months and then they come out, you know. And had they not, had heroic measures not been done, you know, they would’ve died. And so, yeah, just because of the racial disparities in health care and all of that and how I know that is. I mean, coming from years of Black person and from other Black folks that I’ve talked to or that I’ve read about, that’s the issue, you know. Yeah, we don’t wanna be murdered. We don’t wanna be just allowed to die, so we just putting it out there that that’s what we want.
– Yeah, thank you for that. That absolutely makes sense. And you know, something that I noticed kind of as I was looking through the data that is available is that most of the reporting is on voluntary withdrawal of life-sustaining treatment, and for all the reasons you just said, oftentimes, Black patients are much less likely than white patients to request withdrawal. And so, I think when we look at the court cases that are out there, we see a lot of plaintiffs who are the patients or the families of patients of color because they are more likely to, if that care is taken away, it’s not done voluntarily for all the reasons you just talked about, so yeah. Another question I have for you is that a lot of researchers have pointed to a lack of good communication between providers and Black families as a reason for low satisfaction with Black patient care outcomes. What do you think is causing some of these communication issues?
– Same thing, racism, bias. You know, not being culturally competent, not, you know, people, providers like just kinda dismissing our concerns or our fears, you know. And so, yeah, all of that racism and bias spills over into how we’re communicated with or not.
– Yeah, yeah, so then, that bias not only impacts the patients but also families and caregivers who are trying to communicate with the care team.
– Yeah.
– Yeah. And then, so it seems really clear that there’s a lack of research that’s explicitly about involuntary withdrawal of treatment in general. As we move to fill this research gap, how can we ensure that Black experiences are highlighted in this work and how might traditional research methods in a hospital setting disadvantage or maybe misportray the experiences of Black patients?
– I think by the time you get to the hospital, you know, or even get in a room or whatnot, they’ve already, doctors have already determined what your course is gonna be. You know, if you by what happened with Michael Hickson and how he was deemed to have an upwards of 70% chance of survival, but it was determined within minutes, you know, that they were just gonna allow him to die, that he had no quality of life. And so, you know, I see that happen, well, I think a lot of times, like with Black patients, so like a lot of these studies are paid, you know, and they pay you in some kind of fashion. And a lot of Black patients are not selected for that for whatever, you know, reasons. Often, the studies are done without knowledge or consent, ’cause who’s gonna tell you. Barely, I think probably only twice in my life have I been told, “Okay, you’re, you know, you’re the subject of a study,” or, you know, “Would you like to participate, you know, in this study or whatnot?” But, you know, talking to, I think that the providers, you know, there has to be a willingness to engage with, you know, engage with people, engage with their family members, not trying to convince them, you know, of things, but you know, just to say, “Okay, that decision was made, you know. How did that come about?” You know, or whatever. I mean, and I think, sometimes it’s a bias or racism, and then I think sometimes, you know, providers don’t know how to talk to folks, whether they’re disabled or whether they’re Black. They don’t know how to deal. And I’ve literally heard, you know, had people tell me, “I don’t know how to talk to you people.” And literally, you people. “I don’t know how to talk to you people.” You know, and so, you know, that’s one, you know, way where, you know, Black patients and family and caregivers could get the short end of the stick in hospital situations because providers don’t wanna talk. Providers don’t wanna, you know, deal. They wanna come in, do whatever it is they’re gonna do and get out. And you know, I hear, you know, the stories and everything where it’s some providers kinda get to know their patients, but I’ve seen that they’re almost always white. I think with Black patients, assumptions automatically get made.
– Yeah, yeah, absolutely, and I mean, I can only imagine the kind of power dynamics that are at play between patient and doctor anyway when you’re in a hospital setting and feeling like the eyes are on you, you know, all of the time, how magnified that must be for Black patients and other patients of color.
– We just assumed, it’s assumed that we’re incompetent. It really is. And even by non-white doctors and Black doctors, because it’s so pervasive and so, you know, ingrained, you know, that I saw a study years ago that say even Black doctors treat their Black patients different to their white patients. That’s just how ingrained this is. And when you, you know, when you go to medical school and it’s like, “Okay, well, they’re the experts. They’re the ones that know and they’re saying, ‘Oh yeah, Black folks have thicker skins, kinda like animals, so we experience pain differently.'” You know, and you have people who don’t look like you saying these things and you’re like, “Okay, I mean, I guess,” you know? And then, you know, we kinda know too that I think for some of us Black folks, it’s almost like we gotta out-white the white folks in order to be successful. Kinda like Black cops, you know. You gotta be worse, you know, in order to be accepted and, you know, and all of that. And so, I think that, yeah, that that plays a part as well.
– So now that we know what involuntary withdrawal of LSMT is and who it is happening to, our next question is, why is this happening? And more importantly, why do medical professionals who withdraw treatment even have a fighting chance in court? To understand that, we have to talk about medical futility. If a doctor claims that a requested treatment will not positively impact the patient’s medical condition or quality of life, they might say the treatment is medically futile. Because doctors are held in high regard due to their years of training and perceived expertise, they are often taken at their word when they a say treatment is medically futile for a patient. When a patient or their surrogate objects to a futility judgment, it’s important to examine the power dynamics at play. Because doctors have more institutional power than patients or their families do, it is vital that they prescribe care that embodies a combination of medical best practice and respect for the wishes of the patient and surrogate decision makers. But they can’t do that if they have skewed beliefs about which lives are worth living and which are not. This is where quality of life judgments often riddled with ableism come in, and that’s where we’ll pick up on a future video where we’ll talk about medical ableism and have a deeper discussion about what quality of life really means. Thanks for watching. If you liked this video, please share it. Feel free to comment your questions or suggestions for future video topics. To learn more about our work, visit www.NotDeadYet.org. Thanks. A quick addendum to this episode of the Not Dead Yet vlog. I put it in a visual medium but totally forgot to describe it verbally in the video, but all of the citations for any sources we cited throughout the video are going to be available in the video description, and they’re numbered in the order that they occurred over the course of the video. So, if you would like to check those out, please feel free to do so in the episode description right below the video, thanks.