Working to Bring More Equity to the End

How Early Experiences Shaped a Career of Compassion

At 16, two things shaped the life of a young Chicago woman who later would work to improve equity in end-of-life care.

Nicole McCann-Davis lost both her grandparents, with whom she lived in an intergenerational household, a few months apart. Each died suddenly and neither could take advantage of hospice care.

At about the same time, McCann-Davis worked as a volunteer “candy striper” up the street from her high school. She rotated through several departments including oncology, ER, and eventually, hospice.

“I was raised in a family where volunteerism was always a priority for everyone. Starting from a very young age, I was cleaning toys for other kids to have in shelters or packing bags for the homeless. This was a way to continue the tradition, we literally always had to be doing something to help others.”

At the time, she wasn’t familiar with hospice, “Once you realize the patient you were sitting with and talking to on a Friday is no longer there when you returned Tuesday, that was something I had to get used to as a teenager.”

Over time, McCann-Davis says she learned about human connection and the “joy you can bring to someone else” as she sat with patients sharing “silly stories,” watching TV together and brushing their hair.

Promoting Equity, Diversity, and Inclusion in End-of-Life Care

Now, McCann-Davis now works at the Transcend Strategy Group as their Research Director. At the time of our conversation, she led health equity and access for Seasons Hospice & Palliative Care/AccentCare.

Formed by that compassion she gained with her early experience as a teen, she worked to foster equity, diversity and inclusion for staff and patients for the large hospice community.

Though “DEI” managers are becoming common in many fields, a position like hers is still fairly rare in the hospice community.

Racial Disparities in Hospice Care: A Critical Challenge

As the COVID crisis laid bare, institutional racism in the nation’s health care system has doled out unequal care to Black and Latino patients.

And as patients move toward the end of life, inequality follows them. Though Medicare covers the cost of hospice, many groups remain underserved. In 2018, just over 8 percent of Black patients compared to 82 percent of white patients used the federally-funded hospice benefits. Though numbers of Hispanic and Asian patients have improved since 2014, the percentage of African Americans receiving federal benefits for hospice remained relatively unchanged.

Many Communities Face Barriers

But McCann-Davis says race is just one factor that’s a barrier to hospice care. Other under-served groups include Veterans, those experiencing homelessness, rural communities, those who speak English as a second language, and LGBTQ+ patients.

Each population has unique reasons for distrust or challenges that prevent them from taking advantage of the programs. For example, in Spanish, the word for hospice is associated with facilities for mental health or “someplace you put a loved one to die and never see them again,” she says. McCann-Davis says using terms like comfort care or palliative care often gets a more positive response.

McCann-Davis says whether a patient has been getting care in an emergency room or lives in a rural area where getting medical treatment is difficult, many people don’t have a primary care physician who could guide and educate them about hospice care and let them know it will be paid for by Medicare. Even the physicians may not understand the reality of hospice care. She’s working to change that.

Her approach is to focus on education geared towards employees, physicians, and community groups. She supervises quarterly planning around the country to make sure her company’s programs are utilizing local community partnerships to help them reach those who are missing out on the benefits of hospice.

Overcoming Barriers to Offer Hospice Care

Among the novel approaches to overcoming barriers, McCann-Davis says care is sometimes delivered directly to people who are living outside.

“It is a reality for many people within our country in different cities, and so it is important that when I say, ‘hospice means that you meet people where they are, I mean that in every sense of the word.’”

Simple Steps for Inclusive and Respectful Hospice Care

Being sensitive to the differences of historically under-served groups can be as simple as caregivers asking some basic questions. McCann-Davis says these three are a starting point:

• Ask the patient how they prefer to be addressed.
• Ask about pain and medication concerns.
• Ask who they’d like to be involved in decision-making.

Health equity, access, and support

Education and outreach are at the core of McCann-Davis’ work to ensure everyone has equal access to end-of-life care. She says her personal motto is “empowering one another through understanding” and says by that, she means everyone from health care providers, potential hospice patients and leaders in each community. She works with all the company’s programs to ensure they include equity work in their strategic planning.

How COVID-19 Raised Awareness of Health Inequities in Hospice Care

With the COVID pandemic, there’s been increased awareness of the systemic inequities that have contributed to unequal lives — and deaths.

“We’re hearing a lot about health equity over the past year and a half. It is one of the silver linings of the pandemic. People are actually recognizing that there are inequities in the U.S. and the world as it relates to health care. While we have the platform, this is an opportunity for those of us in end-of-life and hospice care to advocate for this to be a priority.”

Giving Patients Control and Comfort at the End of Life

McCann-Davis says with hospice, patients can decide whether they want to be surrounded by loved ones, experience music therapy, and how they want to manage their pain.

“Hospice is really about having control and being able to support not only the patient, but the family as well. When I think about hospice it is a time in your life where you are receiving truly holistic, person-centered care, all from one provider … you have a team of people who are there to support you and there to support your family, to give your family the gift of that additional support that happens after the patient has died, the 13 months of bereavement support that’s provided under the Medicare hospice benefit.”

Addressing the Universal Need for End-of-Life Care

McCann-Davis concedes that talking about death can be difficult but that access to end-of-life care is a universal need. “Every person in this world won’t necessarily have a child, not every person in this world is going to have a prolonged illness, but every person will die. It is equally important that we are ensuring that people have access to the care and support that is needed so they can die comfortably and surrounded by those they love if that’s what they wish.”

To learn more about McCann-Davis and her work, check out this podcast on diversity, equity and inclusion from the National Hospice and Palliative Care Association.