Palliative care providers have a limited window into the disparities plaguing underserved populations when it comes to access and awareness of their serious illness care options, according to Nicole McCann-Davis, vice president of communications and chief health equity officer at Empassion Health.

Palliative Care News recently sat down with McCann-Davis to discuss the scope of disparities among communities of color, plus the biggest challenges palliative care providers face to improve access to their services for patients and families in need.

Health equity became a large focus for McCann-Davis early on in her career. She began as a hospice volunteer as a teenager and witnessed firsthand the disparities that exist in the serious illness space.

McCann-Davis in 2016 joined Seasons Hospice & Palliative Care as its communications manager before becoming its national director of communications and multicultural affairs two years later.

She then served as associate vice president of health equity and access at AccentCare following Seasons’ merger with the company in 2020, before moving on to her current role at Empassion Health. At the newly created position at AccentCare, McCann-Davis oversaw the company’s efforts to foster equity, diversity and inclusion among staff and its patient population.

Highlights from the conversation are below, edited for length and clarity.

What led you to the field of hospice and palliative care? How has your career path in health equity evolved?

I started out volunteering for a hospice organization as a teenager, and the timing worked out that while I was doing that, around the same time, I lost both of my grandparents within four months of each other. I lived in a home with my grandparents and grew up very close to them. And neither one of them died with hospice. That’s really how my professional career began.

I worked in television and corporate communications, and made a switch to something that felt more meaningful. I found myself working in hospice communications, and I would receive patients’ stories that were pretty common in terms of their similar lacking experiences in hospice.

It really inspired me to figure out how I could be part of this solution, rather than just focusing on the problem. It’s really prompted me to become much more aware of the health inequities in utilization in hospice and palliative care. And that ended up influencing every aspect of my career ever since then. I’m very much focused on increasing access to care – not just for people with brown skin, but also everyone.

Palliative care is part of that continuum, and everyone who is eligible for it should have access and be knowledgeable about it so that they can make the most informed decisions for their care.

Are there available data on palliative care utilization that show disparities in access?

Unfortunately, there’s not a lot of data as it relates to palliative care utilization and the disparities, or the demographics related to that utilization, as it is compared to hospice. So, it’s definitely an area of opportunity, where there’s just much more research that’s needed related to palliative care.

I’m personally hoping that it’s the direction that we start to move in as we see that using palliative care just creates such an opportunity to build trust and close that gap from curative medicine to hospice.

But it’s so hard right now to see the scope of underserved groups, because we don’t have access to the data that would help us to make a greater push for a more extensive palliative care benefit.

A lot of people may assume that access to palliative care may be similar to hospice. We do see an increase in access to palliative care as a means to hospice utilization, and that is what it is coming down to in a nutshell. We just don’t have all of that data, it is just not there right now.

What are the knowns and unknowns about underserved populations in palliative care, specifically?

Palliative care has really been low-key evolving. It’s been there in the background as more of a focus in primary care or hospice care, or different forms of curative medicine. It’s been interesting to see the impact that palliative care can make there.

Even though we don’t have the data that we wish we had, we know that depending on what your geographic location is, that can have an impact on access to palliative care. Language makes such a huge impact on not just access, but also the quality of care that you’re able to receive and that building of trust between clinicians and patients also plays a huge part into it as well.

When it comes to some of the knowns and unknowns about underserved populations, we also have to think about the challenges that exist as it relates to competing socioeconomic priorities for patients and families. Not all the time is palliative care, or health care in general, going to play the role that it needs to play in one’s life. Individuals aren’t always going to prioritize it if they are more concerned about putting food on the table, getting their kids to school or having transportation to get where they need. Can they even get to a doctor’s appointment? A person’s education level, their employment situation and health benefits, their neighborhood … these are all aspects to consider as well.

Palliative care can be provided in the home, which brings so much to the table when it comes to the social determinants of health. I think that’s a huge benefit there, but not everyone knows that. A big part of that gap is just making sure the communities even understand what palliative care is, because so many people think that it’s hospice care.

We know that palliative care is positioned in order to really positively and more efficiently assess and address the plan of care and what the true needs are of seriously ill patients, and also who are at an increased risk for food or financial insecurity. It really plays such a huge benefit to the patient when you have a social worker or nurse come into the home, and they’re able to see things that they may not see in the office.

How has awareness and access evolved since diversity, equity and inclusion efforts among providers began ramping up?

I have actually been really excited to see the increase in positions in different palliative and hospice organizations that are dedicated to health equity and increasing access. We also are seeing a lot of engagement from organizations such as the [National Hospice and Palliative Care Organization (NHPCO)] and the [Coalition to Transform Advanced Care (C-TAC)] with a focus on diversity, equity and inclusion.

I think, overall, people are becoming more knowledgeable, and that’s a huge first step in making progress is just being more aware. Because once you become more knowledgeable and more aware, then that’s what can end up ultimately impacting your intent and your commitment.

But we’re still working to move the needle so that diversity, equity and inclusion is not always viewed as an addition to or an optional consideration. Instead, we need to continue to work towards moving it to be a part of every aspect of health care and every conversation.

Have we solved all of the world’s problems as it relates to equity and access? Absolutely not. But I do think we are continuing to make progress.

If you had to name the keys to palliative care health equity policies, what would they be and why?

When it comes to action and what palliative care health equity strategies look like, a few things that really come to mind are that we need to consistently collect social determinants of health and demographic data for every patient. But not just collect that data for every patient, it’s also a matter of taking that information and developing a social determinants of health resource network that allows us to actually address the needs that are coming up in these underserved communities.

One of [U.S. Centers for Medicare & Medicaid Services’ (CMS)] initiatives is around payment for community health integration services to address unmet social needs. That really goes hand-in-hand with collecting social determinants of health data and demographic data, and then building that network.

Another part is the simplification of navigating health care and insurance, not just for palliative care organizations, but also for the industry as a whole. I’ve yet to meet someone who won’t agree that navigating our health care system is extremely challenging, and it’s not streamlined. Let alone imagine trying to navigate our health care system and insurance benefits as someone who is dealing with a serious illness particularly if you are older in life and more mature and also dealing with a serious illness. To simplify that process makes a world of difference, because part of the issues that we see is that people will simply give up or walk away because they don’t want to deal with navigating the insurance system. And so that plays a huge part in breaking down those barriers.

It’s also increasing education and knowledge. Now, that applies both internally and externally in the communities that we’re serving at the bedside and also internally for clinicians so that they are more aware of the disparities that exist and the role that they play in helping to be a part of that solution. At the end of the day, we need to be able to get eligible patients on palliative care services sooner, because that is what’s really going to help them to have an improved quality of life.

Lastly, it’s also a commitment to the long term, because as we know that any work when it comes to diversity, equity and inclusion changes aren’t going to happen overnight. If you’re expecting to see some huge increase in palliative care patients within 30 days, that is just not realistic. And so making sure that we are committed to the long term, to the long game. Community outreach and partnerships are incredibly important as well when talking about those social determinants of health resource networks and what should be developed. That’s where those community partnerships will really come into play.

It’s about listening to communities, respecting their beliefs, culture and traditions and ensuring that you’re communicating with them appropriately. Practice culturally sensitive care and diversifying your employee network when engaging with your community. We desperately need to build up the future of diverse palliative care providers.