Cancer patients generally need palliative care, but widespread misperceptions often stand in their way, both among the public and many clinicians themselves.

This is according to Nadine Barrett, president of the Association of Cancer Care Centers (ACCC). The organization has been holding a series of webinars designed to better educate the oncology community about palliative care. The association is also in the process of studying racial and ethnic gaps in advance care planning, among other projects funded by its research arm, the ACCC Community Oncology Research Institute.

Palliative Care News sat down with Barrett to discuss the barriers that cancer patients often experience when it comes to accessing palliative care.

Do most cancer patients have access to palliative care? Are there big gaps?

There are some gaps certainly related to access to palliative care. The gaps range everywhere from within the system, and also perceptions and views that the community also has around palliative care.

Sometimes what we do find is that patients who need palliative care probably don’t get it in the same way, particularly people who are underserved, minoritized populations. The studies show that they are more likely to get it when they’re closer to the end of life. That speaks to the question, “Why?”

Why is that actually happening? Why do we see these kinds of disparities and these kinds of differences? And there’s a plethora of reasons. Some of those assumptions that people may have about symptom management and pain management and how people actually can tolerate pain.

A lot of that goes into some of the literature that we’ve also seen in our medical schools, where they still kind of show this kind of race differences in terms of pain tolerance and how they manage symptoms or health in general. That translates also into the palliative care sphere as well.

When cancer patients do have access to palliative care, is it primarily while they’re hospitalized, or do enough have access to community-based services?

I don’t think anyone ever has enough access to community-based services. I would say that people generally have access to paid palliative care,but probably not at the same rates. So they vary based on clinic and based on site. It also varies based on how much that clinic or that site or that hospital has really invested in a full palliative care and oncology care. I don’t think that those connections are made in a meaningful way nationally. Yeah, those connections need to happen more.

What are some of the other barriers to accessing palliative care?

There’s this assumption that palliative care is for the end of life. So if you say, “palliative care,” automatically, people are thinking, “Oh, wow, it’s hospice.”

The other thing is that, when providers are asked to give a palliative care consult, it’s different, It’s treated as if it’s different. If someone’s in the hospital and they need to see a cardiologist, for example, they make the referral and they meet the cardiologist, but they actually were part of the care.

We need to get a consult first and then see, and so it kind of makes palliative care seem like it is something different from standard care.

There’s not enough work being done in the community around helping people to understand what palliative care is and how it differs from hospice. That’s a need that we also need to incorporate in our community outreach and engagement work as well, because we just people don’t think about it until it’s the end of life or someone is seriously ill.

Does that kind of confusion exist also within the system, among clinicians or health care stakeholders as well as the public?

I’m not too sure that it’s fully understood and embraced the way that it could be. In other words, there needs to be more internal and external education around palliative care and hospice and it should not be exclusive to only people who are in that area working with people who are seriously ill. It should be something that should be part of our ongoing training across the board, and how we destigmatize the concept of palliative care.