Disability Rights Advocates Gather at SJC to Defend Disabled Lives
Boston, MA – Thursday, October 13 at 12 PM, Second Thoughts MA: Disability Rights Advocates Against Assisted Suicide and Not Dead Yet will gather outside the Supreme Judicial Court at the John Adams Courthouse to remind the SJC and the public that the issue of assisted suicide belongs in the legislature, just as the Suffolk Superior Court recommended in its dismissal in Kligler vs. Mass.
Second Thoughts Director John B. Kelly said, “Neither the U.S. Supreme Court nor any state high court has found a constitutional right to assisted suicide. The prohibition against assisted suicide protects the lives of disabled people.”
Not Dead Yet Director of Minority Outreach Anita Cameron said, “Black people overwhelmingly oppose assisted suicide and don’t use it. As doctor assisted suicide laws become normalized across the country, racial disparities put Blacks at risk of denial of care and early death.”
Not Dead Yet Assistant Director Jules Good said, “After Canada’s Supreme Court ruled that assisted death is a fundamental right, legislation and more court decisions have led to the euthanizing of disabled people who lack care, safe housing, and social supports. The Court must not legalize a practice that further endangers people who are already vulnerable.”
Second Thoughts member Ellen Leigh said, “I supported assisted suicide until I learned that it is all about disability – the top five reasons in Oregon involve depending on others, feeling like a burden, and shame – ‘loss of dignity.’ We all have inherent dignity and do not lose that when we become ill and disabled. Bringing ‘dignity’ into this only increases feelings of shame and burden for choosing to live.”
Speakers will show:
Assisted suicide, as leading proponent bioethicist Thaddeus Pope conceded, “is all about disability.”
Well-educated upper class white people are the drivers of assisted suicide. Marginalized people in MA and across the US oppose assisted suicide, and legalizing it ignores our perspectives and needs.
Palliative care, including palliative sedation when necessary, is already legal to relieve pain and other suffering in a way that does not pose such a risk to vulnerable people. Assisted suicide isn’t needed.
WHEN: Thursday, October 13, 12 PM-1 PM WHERE: 1 Pemberton Square, outside the John Adams Courthouse, intersection of Somerset Street and Ashburton Place.
Second Thoughts MA organized in 2012 to contest the 2012 Ballot Question 2 for the legalization of assisted suicide, which we helped defeat. We have successfully lobbied against every assisted suicide bill since.
Not Dead Yet is the leading national disability organization opposing assisted suicide laws, futility judgments, and “better dead than disabled” policies. The group organized in 1996 to help stop Kevorkian, whose victims were overwhelmingly disabled and not terminal.
Disability advocates around the country are mourning the loss and remembering the leadership of Paul Spooner who died unexpectedly Saturday. In Not Dead Yet’s early years in the late 1990s, Paul was President of the National Council on Independent Living and helped ensure that our message against the “better dead than disabled” mindset was heard by disability advocates at hundreds of CILs. This led to the NCIL membership’s adoption of a formal Resolution Opposing the Legalization of Assisted Suicide in 1997. Under Paul’s leadership, the MetroWest CIL hosted the early NDY website for several years. More recently, his Center has been hosting Second Thoughts Massachusetts’ website.
Paul’s decades of dedication to disability rights will not be forgotten. Below is a brief description of some of his many contributions to the disability rights movement that appeared October 11 in the Framingham Source:
FRAMINGHAM – The Boston Center for Independent Living announced the sudden death of Paul Spooner.
“We are most saddened to share the news that Paul Spooner, a disability rights leader for four decades, passed unexpectedly over the weekend,” wrote the organization in an email. “Paul was Executive Director of the Metrowest Center for Independent Living in Framingham since the early 1990s, a past president of the National Council of Independent Living, and always a fierce advocate for independent living, equal access, and the dignity of people with disabilities.”
Spooner spoke out for “affordable and accessible housing, and accessible transportation, and demanded compliance with the ADA and the state’s Architectural Access Board rules,” said the Boston organization.
Spooner “courted legislators and worked closely with the Metrowest delegation in the state legislature, able to consider Senate President Karen Spilka both a friend and ally. Photos in his office from an earlier time showed Paul with Senator Ted Kennedy, among others,” wrote the Boston organization. “Just last week Paul reveled in the expansion of the CommonHealth program he’d championed with MassHealth that was approved by federal officials. His fingerprints were on too many bills, programs, civil rights complaints, and other advances for people with disabilities to count.”
“Paul Spooner passionately lived disability rights. It defined him and he helped define the cause. He’s totally irreplaceable,” wrote the organization.
The Department of Health and Human Services recently allowed a comment period for organizations and individuals to share their thoughts on proposed changes to Section 1557 of the Affordable Care Act (ACA). Section 1557 prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in certain health programs and activities. There are many proposed changes to the rule, but the two most significant changes are that Medicare Part B will formally be considered federal financial assistance under the ACA, and that language will be added to prohibit discrimination on the basis of gender identity and sexuality. You can view a more in-depth summary of the proposed changes here.
Our Public Comment:
Not Dead Yet is a grassroots disability organization that opposes assisted suicide and euthanasia as deadly forms of discrimination against disabled and chronically ill people. We are pleased to see the proposed amendments to Rule 1557, which will have a tangible, positive impact on disabled people in healthcare settings. As you continue in the rulemaking process, we ask that you consider the following barriers to equitable healthcare for disabled people, particularly discrimination related to clinical algorithms in healthcare decision making, organ transplantation and suicide prevention.
Quality of Life Assumptions and the Use of Clinical Algorithms
Involuntary withdrawal of life-sustaining medical treatment (LSMT) is a practice that has prematurely ended the lives of disabled and chronically ill people without the consent of patients or their surrogate decision makers. It is difficult to fully discern who is most at risk of involuntary treatment withdrawal since the data we have available is primarily 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. The available data shows that older adults, especially those with chronic conditions, comprise a significant number of these cases [1]. BIPOC patients are also at higher risk of having LSMT withdrawn because, at least in part due to healthcare disparities, they are more likely to develop health conditions that necessitate the use of LSMT [2].
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, if appropriate, surrogate decision makers. The use of clinical algorithms that are based on the notion that having a disability inherently reduces one’s quality of life biases care provision in a way that deprioritizes disabled people [3]. This quite literally has life-or-death consequences in decisions about the withdrawal of LSMT, as well as in situations where Crisis Standards of Care are employed.
A key example is the use of the Sequential Organ Failure Assessment (SOFA) throughout the COVID-19 pandemic as a way to determine who would receive care during shortages. As our colleagues at DREDF have pointed out, myriad factors related to communication disabilities and chronic illness could cause someone to receive a lower SOFA score, putting them at risk of being denied care during a shortage [4]. QALYs are another algorithm based on false assumptions about the quality of life among disabled people. We oppose the use of these discriminatory algorithms and support a more patient-centered approach that considers the needs and desires of patients, as well as more consideration of the perspectives of others who have undergone treatments that are the subject of these discussions.
Discrimination in the Organ TransplantationProcess
There is a history of discrimination against disabled people who wish to receive organ transplants. Though organ donation is facilitated through a national program, each health center has its own policies and procedures on referring candidates for transplant. In a 2019 report, the National Council on Disability found that “the assumption that people with disabilities will not be able to comply with postoperative care has caused disability to be considered a contraindication to organ transplant at many transplant centers.”[5] This results in disabled people being denied transplant not because of current or reasonably foreseeable health problems, but because of the ableist idea that disabled people cannot follow instructions as well as nondisabled people. While some people may need more support in following postoperative procedures, this should not be the deciding factor in organ transplant candidacy evaluations.
Standardized nondiscrimination policies for transplant candidates, such as those introduced in the Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 1235), should be integrated into the policies and procedures that healthcare centers create to comply with Rule 1557.
Discrimination in Suicide Prevention Care
When a disabled person presents with suicidal behavior, their desire to end their life may be validated or even encouraged by medical professionals in places where assisted suicide is legal, especially if they have a serious or advanced chronic condition [6]. Assisted suicide, also referred to as medical aid in dying (MAiD), is death by lethal drugs requested by a person and prescribed by a medical professional. A person can die by assisted suicide if they feel that the physical pain and/or emotional struggles of living with a serious illness or disability are too much to live through. If their doctor agrees with this concern, the doctor can write a prescription for a medication that will kill the person quickly.
Both assisted and unassisted suicide produce the same result: the intentional death of a person. One of the dangerous distinctions between assisted and unassisted suicide is that the former is deemed a rational response to illness or disability while the latter is usually seen for the tragedy it is. Therefore, when a disabled patient expresses suicidality, it is seen as rational. This puts disabled people at risk.
If a person meets the criteria for pursuing assisted suicide, they are disabled, whether they identify that way or not. One of the first steps in the process is that the doctor who prescribes lethal drugs determines “that the patient is capable and not suffering from a psychiatric or psychological disorder or depression causing impaired judgment.” Based on reports about people who died by assisted suicide in Oregon, in only 3% of cases was this determination made by a psychological professional [7].
“Impaired judgment” is clearly a subjective criterion. If the doctor or professional evaluating the patient holds true the ableist notions pervasive in our society– that disabled people are suffering, are burdens, that our care needs or society’s failure to meet those needs make us unable to live meaningful or acceptable lives, that our conditions are humiliating – then when a patient gives those reasons for wanting to die, the typical doctor or professional will not consider that as evidence of “impaired judgment.” They will write suicidality off as a logical response to being disabled.
Even when disabled people seek out healthcare for reasons unrelated to mental health, the American Psychiatric Association recommends that the patient should potentially undergo a suicide assessment [8]. They cite “functional impairments, pain, disfigurement, increased dependence on others, and decreases in sight and hearing” as risk factors for suicide. This is not a wholly unfounded assumption – a 2018 survey of more than 430,000 US adults found that respondents with disabilities were over 3 times more likely to experience “frequent mental distress” than respondents without disabilities [9].These studies problematically draw a surface-level correlation between having a disability and being suicidal, when in reality, the barriers disabled people face as a result of living in an ableist society often cause more emotional distress than the disability itself [10]. It is understandable that hospitals would see this data and want to perform a suicide assessment on disabled patients as a preventative measure since this population is much more likely to struggle with “mental distress.” However, there is a difference between using data trends to inform care decisions and reinforcing the assumption that disabled people must want to die because our lives are tragic and difficult, an assumption rooted in ableism.
Conclusion
Not Dead Yet recommends that the requisite nondiscrimination training outlined in the proposed Rule changes include specific education on disability cultural competency and anti-ableism, using materials and expertise from leading disability justice organizations such as the American Association for People with Disabilities, the National Council on Disability, the Autistic Self Advocacy Network and others.
The proposed amendments to Rule 1557 can lay the foundation for a healthcare system that affirms the inherent value of all human lives and focuses on protecting vulnerable populations from discriminatory practices. Not Dead Yet strongly recommends that organizational policies and procedures to comply with Rule 1557 include training from disabled-led organizations on healthcare disparities and disability justice, cultural competency and accessibility best practices.
[2]: Bazargan, M., & Bazargan-Hejazi, S. (2020). Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Review of Recent Literature. American Journal Of Hospice And Palliative Medicine®, 38(6), 688-718. https://doi.org/10.1177/1049909120966585
[3]: Bazargan, M., & Bazargan-Hejazi, S. (2020). Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Review of Recent Literature. American Journal Of Hospice And Palliative Medicine®, 38(6), 688-718. https://doi.org/10.1177/1049909120966585
[4]: DREDF. (2020). Letter From DREDF and Additional Organizations Opposing California’s Health Care Rationing Guidelines – Disability Rights Education & Defense Fund. Disability Rights Education & Defense Fund. Retrieved 3 October 2022, from https://dredf.org/letter-opposing-californias-health-care-rationing-guidelines/.
[5]: National Council on Disability. (2019). Organ Transplant Discrimination Against People with Disabilities.
[6]: Stainton, T. (2019). Disability, vulnerability and assisted death: commentary on Tuffrey-Wijne, Curfs, Finlay and Hollins. BMC Medical Ethics, 20(1). https://doi.org/10.1186/s12910-019-0426-2
[7]: Oregon Health Authority. (2021). Oregon Death with Dignity Act 2020 Data Summary.
To view the video on YouTube , go here: https://youtu.be/B0z1XnuoSV0
CW: Suicide, ableism
In this vlog, we’ll explore the relationship between suicide prevention, disability, and assisted suicide, as well as the ways disabled people are endangered by policies that devalue our lives.
1&2. APA Suicide Assessment Guidelines: https://psychiatryonline.org/pb/assets/raw/sitewide/practice_guidelines/guidelines/suicide.pdf 3. CDC Frequent Mental Distress survey: https://www.cdc.gov/mmwr/volumes/69/wr/mm6936a2.htm?s_cid=mm6936a2_w 4. Prejudice against disabled people: https://www.c-q-l.org/resources/articles/most-people-are-prejudiced-against-people-with-disabilities/ 5. Osteoarthritis stats: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2920533/#:~:text=pain%20and%20disability.-,Osteoarthritis%20(OA)%20is%20the%20most%20common%20joint%20disorder%20in%20the,%25%20in%20women%20(2). 6. Disability, vulnerability, and assisted death: https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-019-0426-2 7. Oregon “Death With Dignity” Act 2020 Report: https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year23.pdf
TRANSCRIPT
– Hello, and welcome back to the “Not Dead Yet Vlog”. 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 with pink molds in them. And today, I have on a blue and white houndstooth pattern button down shirt.
September is Suicide Prevention Month. During this month, we share stories of loss, grief, survival, and resilience. We share resources about where to get help if a person is feeling suicidal. We talk about suicide so that people struggling with suicidal thoughts feel more comfortable sharing their stories and seeking help. But one thing we rarely see discussed during this month is the relationship between disability, suicidal ideation, and assisted suicide. That’s what we’re here to explore today.
Let’s explore two scenarios. The first will feature a non-disabled person, and the second will feature a disabled person. While other factors like race, gender, and size, among others, certainly impact the way patients are treated, let’s assume for the sake of this hypothetical scenario that the only difference between these two patients is their disability status.
In scenario one, we have a person who does not have disabilities other than mental health challenges. This person shows up to the hospital with an intent and plan to die by suicide. Maybe they’ve already made an attempt, and have been brought to the hospital by someone else. When this patient is admitted, they are evaluated by a medical professional. This evaluation includes several core components to learn more about the patient’s current state and prior history. These include current plans for suicide, current and previous diagnoses or presentations of psychiatric illness, history of prior suicidal behavior, potential external triggers for the current episode, and the strengths and vulnerabilities the patient has that will inform a treatment plan. Based on the information gathered from the evaluation, the medical professional will prescribe a treatment plan to the patient.
The treatment plan gives the patient instructions, and hopefully support for recovering after a suicide attempt. Sometimes, the patient may choose to stay in the hospital or another inpatient facility, but they should not be forced to do so. Other parts of a treatment plan could be medication interventions, types of psychotherapy, and management of external factors in the person’s life that could trigger future suicidal ideation. The treatment plan is enacted. If the person completes the plan, they can go back to their normal life, hopefully with more tools and resources for managing their mental health. Sometimes, a person may face additional challenges in completing the plan, so the plan is revised, and the person may continue receiving care.
People face many, many barriers in accessing appropriate care after a suicide attempt, including but not limited to forced institutionalization. We can’t cover all of that in this video, but we will link some resources down in the description so you can learn more about these issues and the amazing work being done to combat them.
Now, let’s talk about person two. Person two has a disability that significantly impacts their ability to independently perform activities of daily living, such as feeding themself and using the bathroom. They land in the hospital after a medical event unrelated to mental health. Even if they did not come into the hospital with psychiatric symptoms, the American Psychiatric Association recommends that the patient should potentially undergo a suicide assessment. They cite, quote, “Functional impairments, pain, disfigurement, increased dependence on others, and decreases in sight and hearing,” end quote, as a risk factors for suicide. Now, this is not a wholly unfounded assumption. A 2018 survey of more than 430,000 US adults found that respondents with disabilities were over three times more likely to experience, quote, “Frequent mental distress,” than respondents without disabilities. The problem with these studies is that they draw surface-level correlation between having a disability and being suicidal, when in reality, the barriers disabled people face as a result of living in an ableist society often cause more emotional distress than the disability itself. It is understandable that hospitals would see this data and want to perform a suicide assessment on disabled patients as a preventative measure, since we are much more likely to struggle with, quote, “mental distress”.
But there’s a big difference between using data trends to inform care decisions, and reinforcing the assumption that disabled people must want to die because our lives are so tragic and difficult, an assumption rooted in ableism. For example, osteoarthritis, a joint disorder, is more common in women than in men. But if a woman showed up to the hospital with zero symptoms of osteoarthritis, it would make no sense for doctors to start testing for it rather than managing the issue at hand. It takes time and attention away from the care the patient actually needs in that moment. The same can be said about assuming suicidality in disabled persons.
But what about when a disabled person actually does want to die by suicide? Since we have all this data showing that disabled people are more likely to struggle with mental distress, we should have excellent care measures in place for disabled people who present as suicidal. But in reality, a disabled person’s desires to end their life maybe validated or even encouraged by medical professionals in places where assisted suicide is legal, especially if they have a serious or advanced chronic condition. In short, assisted suicide is death by lethal drugs requested by a person, and prescribed by a medical professional. A person can die by assisted suicide if they feel that the physical pain and/or the emotional struggles of living with a serious illness or disability are too much to live through. If the doctor agrees, the doctor can write a prescription for a medication that will kill the person quickly.
Many proponents of assisted suicide say that it is not the same thing as traditional suicide because people who die this way want to live, but feel they can no longer endure their illness or disability. However, you could make the same argument for unassisted suicide. People who die by suicide don’t want to die for no reason, but rather, because they feel they can’t continue to live given their circumstances. Both assisted and unassisted suicide produce the same result, the intentional, self-inflicted death of a person. The actual and far more dangerous distinction between assisted and unassisted suicide is that the former is deemed a rational response to illness or disability, while the latter is usually seen for the tragedy it is. Therefore, when a disabled patient expresses suicidality, it is seen as rational.
Let’s examine how this puts disabled people at risk. First, we have to acknowledge that if a person meets the criteria for pursuing assisted suicide, they are disabled, whether they identify that way or not. We’ll get into the nitty gritty of the assisted suicide process in a future video, but for now, just bear that fact in mind. One of the first steps in the process is that the doctor who prescribes lethal drugs determines, quote, “That the patient is capable and not suffering from a psychiatric or psychological disorder or depression causing impaired judgment,” end quote. Based on reports about people who died by assisted suicide in Oregon, in only 3% of cases was this determination made by a psychological professional.
We can see that quote, “impaired judgment” is a subjective criterion. If the doctor or professional evaluating the patient holds true the ableist notions pervasive in our society, that disabled people are burdens, that our care needs or society’s failure to meet those care needs makes us unable to live happy lives, that our conditions are humiliating, then when a patient gives those reasons for wanting to die, the doctor or professional will not consider that as evidence of impaired judgment. They will write suicidality off as a logical conclusion to being disabled.
The illustration by Toujours Vivant, or Not Dead Yet Canada, pointedly sums up the disability double standard in treatment of suicidality. Illustration is a cartoon drawing depicting a person using a power wheelchair. On their left is a set of stairs leading up to a door with a sign above it marked, “Suicide Prevention Program”. On their right is a ramp that is marked as wheelchair accessible, leading up to a door with a sign above it, marked “Assisted Suicide”. The person’s wheels on their wheelchair are pointed toward the ramp up to the door that says “Assisted Suicide”. It will always be easier to let us die than to give us the tools we need to live. It will always be more cost effective to prescribe us a lethal drug, than a course of treatment. And for these reasons, it will always be dangerous for disabled people to live in a society where assisted suicide is legal. Suicide does not have to be our fate. Thank you for watching. Please visit www.notdeadyet.org to learn more about our work. Bye.
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.
