Quality End-of-Life Care Should Be for Everyone: How Healthcare Providers Can Promote Equity in Hospice Care

116

By Bazi Kanani

I am struck by a cruel irony in healthcare for many people of color. Throughout our lives, we worry that healthcare workers dismiss our pain and concerns. Too many of us don’t get enough care for economic reasons. But in our final days, research shows, we’re receiving more intensive medical treatments compared to white patients. We’re also more likely to die in a hospital.

In short, people of color are less likely to get care when they could benefit from it and more likely to pass away in a hospital when they’d have a higher quality of life in a home or hospice setting.

This is consistent with the failure of our healthcare system to offer racial and ethnic minorities the same level of care as white patients. Too many people of color aren’t being referred soon enough to hospice where they can receive care for pain and symptom management, spend their final days in as much comfort as possible, avoid repeated unnecessary and unhelpful hospitalizations, and remain with family.

But the disparity in hospice care isn’t rooted solely in this specific system failure. There are other contributing factors that must be acknowledged — and addressed — to ensure that more people are getting quality care at the end of life. These factors relate to culture, misperceptions of hospice care, and lack of awareness of hospice care options. Healthcare executives can make a difference by addressing healthcare disparities and offering better support in these areas.

For example, we know that a lack of advance care planning can lead to more medical interventions at the end of life when family members are left to make these decisions. But, especially among the older generation of my relatives of East African heritage, there’s a strong aversion to talking about death for fear that it could induce or expedite it. They believe it’s the responsibility of family members to care for them in their final days; they’re often opposed to the idea of “strangers” coming into their homes to fulfill those duties. (These values are also shared among many Native American and Latinx people.)

People who face discrimination in their lives and healthcare interactions are understandably skeptical of inviting healthcare workers into their homes. But end-of-life challenges are the same for patients and their caregivers regardless of race or culture.

Too many people aren’t aware that hospice care:

• Can be affordable. It is covered by Medicaid, Medicare, and many insurance plans. People may overestimate their out-of-pocket costs. Nonprofit hospice providers often accept patients who cannot pay.

• Is not where you go after you give up. The focus of hospice care is not death but living fully. It provides patients with a high level of healthcare support in their own homes so they can make the most of the time they have left with their family and friends. Many hospice patients live longer than they would have otherwise.

• Supports family members who are the primary caregivers for seriously ill patients. Hospice care can address caregiver burnout with emotional and spiritual support services. Additionally, caregivers can take breaks when trained professionals temporarily step in.

• Prioritizes patients’ personal care wishes. Hospice care teams are trained to respect different religious and cultural beliefs and practices. They’re available to assist, not take over. They can answer questions and offer suggestions based on their extensive experiences with end-of-life care.

Primary care physicians, especially those who care for diverse populations, need a better understanding of hospice and palliative care services so they can refer patients earlier. As part of that additional education, executives can offer training on how to address health inequalitiesand how to discuss hospice with patients. It can be a difficult subject to broach, but according to the Hospice Foundation of America, most patients and families wish they knew their hospice care optionsand experienced that care earlier in the illness.

More information about hospice and palliative care options is also needed among communities of color to dispel misperceptions and raise awareness. This can be shared through partnerships with faith institutions and other influential community groups or advertising and media coverage.

As part of this effort, healthcare executives can do more to represent a diverse spectrum of patients in their marketing and educational materials to show they’re committed to serving these populations. Share stories of patients and families from different racial, ethnic, and cultural backgrounds. And when a patient or family calls, providers should ensure that they have the staff and expertise to address diverse needs and perspectives.

I am grateful for those working toward greater equity in healthcare. Hopefully, high-quality healthcare will continue to become more accessible for people of color throughout our entire lives — including our final days.

Bazi Kanani, a former network news journalist, is the content director at SE2, a Colorado-based integrated communications and marketing agency focused on behavior change.