Hospice Care

Addressing Disparities in Hospice and Palliative Care Access for Black Americans

Racial disparities continue to plague the U.S. health care system, and hospice and palliative care are no exception. According to data collected by the National Hospice and Palliative Care Organization, Black Americans on Medicare seek hospice and palliative treatment 13% less than their white counterparts. 

This figure is especially troubling when considering that Black Americans are often more likely to develop illnesses that qualify patients for these types of care, including heart disease and different forms of cancer

So, why do Black Americans still pursue valuable hospice and palliative care at lower rates? Well, there’s no one answer. Decades of historic and systemic obstacles have profoundly impacted the Black community and continue to create problems for this demographic as they navigate the health care system.  

Distrust of the Health Care System

In a 2020 poll, 55% of Black Americans reported that they distrust the American health care system, and with good reason. Historically, the Black community has faced racism, discrimination, and has been on the receiving end of horrific treatment and experimentation at the hands of the medical community, most notably the Tuskegee Syphilis Study

Even in the present day, Black Americans continue to face many of these same problems when seeking health care. Black infants face a mortality rate double that of white infants, a number that is cut in half when the attending physician is also Black. Additionally, Black women are three times more likely than white women to die in pregnancy and childbirth. 

In a study of 400 hospitals in America, researchers found that Black patients with heart disease were given “older, cheaper, and more conservative treatments” than white patients and, following surgery, Black patients were discharged from the hospital earlier than white patients – often when discharge was still unsafe. 

Furthermore, many medical practitioners are never taught how various ailments appear on black skin versus white, with a significant portion of medical textbooks only showing symptom examples on lighter complexions. This can, and does, lead to patients being misdiagnosed or undiagnosed, meaning these patients go for longer periods of time without access to treatment. 

Lack of Access

Black Americans are less likely to have health insurance than white Americans, even after the passage of the Affordable Care Act, which lowered the uninsured rate of Black Americans by almost 10 percentage points. Even after gaining access to Medicare after 65, individuals who haven’t previously had health insurance may be less likely to seek health care. 

People without access to insurance coverage are unlikely to have a primary health provider, which also prevents them from accessing specialists. Not only do individuals without health insurance not see a doctor regularly, but they are also more likely to wait to see a physician until an illness has progressed too far for treatment.

As of 2021, Black Americans have the highest poverty rate at 19.5%. A lack of economic resources can lead to the inability to access needed health care, on both an individual and systemic level, meaning communities with lower economic standing may not have the same health resources as a higher-income area. Uninsured, or even insured, people likely don’t have the money to cover out-of-pocket costs for care, which are often not disclosed until the time of the appointment. Additionally, people impacted by poverty may not be able to afford to miss a day of work to go to a medical appointment, especially when the only provider they have access to is a long distance away. 

Lower Rates of Satisfaction

The pairing of a mistrust of the medical community with a lower rate of access to health care also impacts a patient’s and family’s level of satisfaction with their care. With higher mortality rates, increased risk of misdiagnosis, and lower quality care when seeking treatment, Black Americans are generally less satisfied with their health care experience than their white counterparts. 

Additionally, Black Americans may face racism – both explicit and implicit – from medical personnel, a problem exacerbated by the fact that the vast majority of doctors and nurses are either white or a different racial group. Black Americans make up only 5% of doctors in the U.S. and only 9.9% of nurses. Studies have shown that Black patients have better outcomes and agree to more preventative and invasive forms of care when treated by Black doctors, making it imperative that more Black Americans join the medical field.

What Can Hospice Providers Do?

We know that hospice and palliative care is hugely beneficial for both patients and families, with patients experiencing reductions in pain symptoms, caregivers feeling supported, fewer emergency room visits, and family satisfaction. Accordingly, hospice and palliative care providers want as many people as possible to benefit from these types of care, which means addressing the issues that prevent communities and individuals from seeking it out. 

With Black Americans pursuing hospice and palliative care less than white patients, we need to determine how to better support Black patients already receiving this care and how to encourage more to do so. 

Building trust with Black patients is essential to address the issue. Don’t dismiss their concerns or objections to hospice or palliative care and don’t make assumptions if they express hesitations. Take the time to listen, answer questions, and show that you genuinely care about their health and well-being. 

Hiring more Black health care professionals is another way to help bridge this gap and ensure that Black patients are receiving the care they deserve. Including more Black physicians and nurses on the care team not only increases the likelihood that Black patients will have higher rates of satisfaction and quality care, it also means the Black patients will have the opportunity to see someone who looks like them be involved in their care journey. 

Take advantage of resources like the NHPCO’s Inclusion and Access Toolkit, which provides tangible and helpful tips to bring hospice and palliative care to all communities.

The end-of-life journey can be scary and overwhelming. Every patient and family facing this deserves the support hospice and palliative care can provide. At the end of the day, it’s the medical community’s responsibility to ensure that everyone, regardless of their race, socio-economic status, or any other descriptor, has access to the same high-quality care. 
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