This article was first published underground magazine.
When Kevin E. Taylor became a pastor 22 years ago, he realized how often he had to help families make heartbreaking decisions for loved ones who were seriously ill or about to die. I didn’t expect it to happen. Families at his majority-black church in New Jersey receive written instructions and reminder conversations to find out if their relative wants or does not want a certain type of treatment. Generally not.
So Taylor began encouraging church members to ask their elders questions, such as whether they would want to remain on life support if they became ill and could no longer make decisions for themselves.
“Every time we have a conversation, we remove that stigma,” says Taylor, who is currently the senior pastor of Unity Fellowship Church of Christ in Newark, which has about 120 active members.
Taylor is part of an initiative led by Compassion and Choices, a nonprofit advocacy group that encourages more Black Americans to consider and document their medical wishes toward the end of life. Participating in
End-of-life planning – also called advanced care planning (ACP) – usually need A person who fills out legal documents indicating the care needed if an injury or illness leaves one unable to speak for oneself. You have the option to specify whether you want life-sustaining care even if it is unlikely to cure or improve your condition, or comfort care to manage your pain even if it hastens death.medicine group have supported The ACP and the proposed public awareness campaign aim to promote this practice.
still the study It turns out that many Americans, especially black Americans, do not accept the promise of the ACP. Supporters say such programs are especially important for Black Americans, who are more likely to experience the same. Racism Declining quality of care throughout the health system. They say advance care planning can help patients understand their options and document their wishes, and can also reduce anxiety for families.
But this practice is also at risk scrutiny Recent years: Some research suggests that it may not actually help patients get the kind of care they want at the end of life. It is unclear whether these results are due to the study method or to failures of the ACP itself. It is very difficult to compare the care an individual desires in the future with the care they actually receive at the time of death. And many studies showing shortcomings of ACP have primarily focused on white patients.
Still, while researchers say it’s important to encourage discussion about end-of-life care, they also acknowledge that ACP needs improvement or overhaul. “We need to look at what we can do beyond advance care planning,” said Karen Block, a social work professor at Boston University who studies decision-making and acceptance of ACP in black communities. . “Or could we do something different with advance care planning?”
Advance care planning was first proposed in the United States in 1967. That’s when a lawyer for the now-defunct American Euthanasia Association proposed the idea of a living will. A living will is a document that allows a person to indicate whether to withhold or revoke a life extension. Treatment if you are no longer able to make medical decisions. By 1986, most states had introduced living will laws that established standardized documentation for patients and protections for physicians according to patient wishes.
Over the past 40 years, ACP has expanded include various legal documents called advance directiveto explain in detail your wishes end of life care. In addition to a do-not-resuscitate (DNR) order, patients can list their preferred treatments and scenarios and appoint a surrogate to make medical decisions on their behalf. Medical facilities that receive Medicare or Medicaid reimbursement include: Required Ask if the patient has advance directives and provide relevant information. and, largely According to the state, doctors can record a patient’s end-of-life wishes in a form called a provider order for life-sustaining treatment. These documents encourage patients to discuss their preferences with their physicians, which will be added to the patient’s chart. This is different from advance directives, which are typically filled out by the patient themselves without discussing it directly with their doctor.
But research shows there are racial disparities when it comes to who makes those plans: A 2016 study The survey of more than 2,000 adults, all over the age of 50, found that 44 percent of white participants had completed an advance directive, compared to 24 percent of black participants. Understood.many people don’t know If you don’t understand or don’t fully understand ACP. And for Black people, that knowledge may be especially difficult to obtain. One study found that clinicians tend to avoid discussing their desired end-of-life care with Black and other nonwhite patients. unpleasant Start these conversations, I don’t know whether the patient wants it or not.
other the study They found that there may be more black Americans. I’m hesitant Distrust in the medical system played a role in filling out the forms. took root in a long history of racist treatment. “In my opinion, this is a direct result of an isolated health care system,” Block said. “When we forced integration, integration did not mean equal care.”
Religion can also be a major barrier to ACP. The majority of black Americans religioussome people say. I’m hesitant You engage in ACP because you believe that God, not the clinician, should decide. destiny. This is one reason why programs like Compassion & Choices are looking to churches to make his ACP more accessible.Several the study Supporting the effectiveness of sharing health messages. no smoking and heart health, in the church community. “Black people tend to trust faith leaders, so if the church says this is a good thing, we’re willing to try it,” Block said.
But in 2021; article Palliative care doctors have found growing evidence that it may be ACP. We’re screwed Ensuring that patients receive the end-of-life care they desire (also called goal-matched care). The paper summarizes the results of numerous studies examining the effectiveness of the practice and concludes that “despite the inherent logic of ACP, the evidence suggests that it does not achieve the desired effects.” Masu.
for examplealthough some studies have identified advantage Patients are more likely to die on the spot, etc. desirable or avoid unwanted resuscitation, others I found the opposite. One study They found that critically ill patients who prioritized comfort care in advance directives spent virtually the same number of days in the hospital as patients who prioritized life-sustaining experiences. The authors of the 2021 summary paper suggested several reasons why goal-aligned care may not occur. Patients may request treatments that are not available. Clinicians may not have access to documentation. A surrogate can override a patient’s request.
a pair older the study suggested that these problems may be particularly pronounced in black patients. For example, we found that Black cancer patients who signed a DNR order were more likely to be resuscitated. These studies held out as evidence Black Americans receive less targeted care. But Holly Prigerson, a researcher at Cornell University who oversaw the study, said her team looked at the care of Black participants who were resuscitated against their wishes, and in that case, the patient was transferred and was unable to attend the clinic. Doctors point out that they did not have access to the records. From another hospital.
One problem facing advance care planning research is that many studies focus on white patients, with little insight into whether ACP helps black patients.For example, if two Recent the study In this case, more than 90 percent of the patients were white.
Many experts, including Prigerson, agree that it’s important to get creative. new approach To assess goal-aligned care. This usually depends on what the patient has indicated in advance directives or what the patient has communicated to family members. Month Or a few years before he died. However, patients may change their minds and relatives may not understand or accept their wishes.
“It’s very problematic to assess that,” Prigerson said. “It’s not impossible, but there are a lot of problems.”
As for whether ACP can improve end-of-life care, particularly in areas where Black patients receive worse care, such as pain management, experts like Block say the study doesn’t actually examine that question. It is pointed out that this has not been done.But it also addresses other racial disparities, such as correcting doctor falsehoods. belief Regarding the lower sensitivity of black patients painimprove the way doctors do things connect Accommodating Black patients and increasing social support for patients who wish to enroll in hospice are likely to be more important than expanding ACP.
ACP “may be part of the solution, but it’s not enough,” said the University of Pittsburgh professor who specializes in palliative care and medical ethics and was one of the authors of a 2021 paper that questioned the benefits of ACP. One Robert M. Arnold said: ACP’s.
Many of the shortcomings of ACP, including low engagement rates and unclear benefits, have prompted researchers and clinicians to consider ways to overhaul the way they practice ACP.
Efforts to make the ACP more accessible include creating easy-to-read versions without legalese and short, simple videos. 2023 study We found that one program that incorporated these elements, called PREPARE for Your Care, helped both white and black adults with chronic conditions receive goal-aligned care. The study was notable because it asked patients who were still able to communicate whether they were getting the care they wanted, rather than waiting until death to assess targeted care.
“That’s very important to me,” says Rebecca Sdore, a geriatrician and researcher at the University of California, San Francisco. He was the senior author of the study and contributed to the development of PREPARE for Your Care. Sudore and her colleagues was suggested “Real-time assessments from patients and their caregivers” to more accurately measure on-target care.
In recent years, clinicians have increasingly recognized that ACP requires ongoing conversation and shared decision-making between patients, clinicians, and physicians. agentIt’s not just a legal document, says Ramona Rose, a geriatrician at the University of Arkansas for Medical Sciences.
Rose and her colleagues study Consider whether specific types of ACP can increase Black patient engagement and improve care for Black patients. A group of seriously ill elderly patients (half black, half white) in clinics across the South are using the ACP guide “Respecting Choices,” which focuses on conversations with patients and families, or how tall patients are. You have received one of the lower “Five Wishes” materials. Surveys and the most widely used advance directive in the United States. The research team hypothesized that if patients and families were prepared to discuss their wishes with clinicians, respecting their choices would increase black patient participation and perhaps lead to more goal-aligned care. Yes, Rose says.
Pastor Taylor notes that when he talks to church members about end-of-life care planning, they often understand its importance for the first time. And usually it convinces them to take action. “It can be awkward at times,” he says. “But right now it’s awkward and there’s a lot of information.”
