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Four experts came together to discuss the changing landscape of palliative care, opportunities to make it a more equitable service, and the challenge of training all providers in palliative care communication.
In accordance with the 2024-2025 Association of Cancer Care Centers’ (ACCC) President’s Theme, Reimagining Community Engagement and Equity in Cancer Care, a webinar was held in November 2024 to discuss challenges and opportunities in oncologic palliative care, particularly within the context of health equity and disparities.
ACCC President Nadine Barrett, PhD, MA, MS, FACCC, senior associate dean for community engagement and equity in research, Wake Forest University School of Medicine and Atrium Health, opened the webinar by reaffirming the mission of ACCC to reimagine cancer care and reflecting on the personal relevance of palliative care in her life, as her mother was a palliative care nurse who took great pride in her work. “Every time she came home, she was completely spent, but in an incredible way where she felt like she was really supporting her patients in the best [way] possible at the end of life,” Dr. Barrett recalled.
The following 3 panelists were then introduced: Kimberly Johnson, MD, MHS, Brenda A. Armstrong distinguished professor of medicine, division of geriatrics and palliative care, Duke Health; Ramona Rhodes, MD, associate professor, University of Texas Southwestern Medical Center; and Declan Walsh, MD, chair, department of supportive oncology, Atrium Health Levine Cancer Institute.
Dr. Walsh first commented on the significant developments made in the discipline of palliative care both nationally and internationally that have had an influence on medicine as a whole. “Many of the ideas that underlie high quality palliative care—interdisciplinary teams, whole-person care, attention paid to caregivers, and family contexts—have become mainstreamed in medicine in general,” he said. Despite this, Dr. Walsh also noted that there is still considerable work to be done in improving access to palliative care services for underserved populations.
Dr. Johnson agreed that ample opportunity exists to improve care delivery and reach larger numbers of people. She stated, “Palliative care, in its reach of underserved populations, is not very different from anything else in the continuum of health care. We see the same kind of disparities starting at birth [and continuing] all the way to the end of life.”
On the distinction between care and high-quality care, Dr. Walsh introduced the idea of the Loved One Standard, stating, “If it was a family member of yours who was affected by a particular illness, what would you want for them? The cancer center or hospital should deliver that standard.” He acknowledged the expense incurred with this standard of care but argued that the investment in whole-person care is well worth it. Some patients with a serious illness tend to accept their pain and other negative symptoms, because they assume that these hardships are unavoidable. But Dr. Walsh urged all providers to explain to their patients that they will work hard to make quality of life as high as possible through palliative care services.
Dr. Johnson called for the normalization of integrating palliative care into cancer care. “We have robust evidence that it improves things that people care about: better communication, symptom management, quality of life, and, in some cases, longevity,” she explained. But even in the face of this evidence, palliative care is often portrayed and viewed as optional in a way that other fields of medicine are not. “We always ask, ‘Has the patient agreed to a palliative care consult?’ But if the patient needs to see a cardiologist, there is no expectation that they would be asked, ‘Is it okay for someone to come check your heart?’” Dr. Johnson pointed out. Dr. Rhodes added that in addition to buy-in from the institutional or organizational level, there must also be buy-in at the clinician level to avoid working in silos instead of as a synchronous team.
In response, Dr. Barrett asked whether this permission feeds into the idea of palliative care being unnecessary. An issue of language was cited by Dr. Walsh, as palliative care is not in many patients’ day-to-day vocabulary. He argued that the reception of palliative care by patients and caregivers depends on how it is introduced. “It’s the difference between, ‘We have a great expert on staff who’s going to help you with [your symptom management]’ versus treating the consult as a failure [of treatment] or a loss,” he said.
According to Dr. Walsh, the original concept of hospice developed in the UK and was framed as an additive benefit—a perspective that was lost in part when implemented in the US, where there tends to be an understanding that patients are moving away from acute care and curative interventions when they enter hospice care. “This is an unfortunate structure that has held back the field because of the frequent confusion between what is palliative and what is hospice,” stated Dr. Walsh. “[This mindset] has made it more difficult for people to see the very real benefits that palliative care brings.” He also remarked that for vulnerable and underserved populations, the idea that certain aspects of medical care would be taken away to access hospice was also an unwelcome message. “The focus should be on the quality of care and the quality of life and enhancing that rather than taking things away,” said Dr. Walsh.
The timing of these conversations and the person who initiates them are crucial factors to consider as well. According to Dr. Rhodes, “Early integrated palliative care is more beneficial to patients and their families compared to those who receive it later in the disease trajectory.”
When compared with White populations, noted Dr. Johnson, Black patients are less likely to receive adequate pain and symptom management; further, they are more likely to report lower satisfaction with providers and shared decision-making and to receive a lower quality of care that is less consistent with patient goals of care. Furthermore, many patients of minoritized and marginalized populations do not have access to a trained palliative care specialist, so it is important for all primary care providers to have basic training in palliative care skills like pain management and communication.
Dr. Rhodes added that providers have a duty to not only be comfortable with talking about palliative care, but to introduce this service in such a way that patients understand its importance. “I always think about lack of patient knowledge as a barrier to care, but I’ve had to reframe it in my mind,” said Dr. Rhodes. “Whose fault is it that they don’t know? It’s not theirs. It’s ours. And if we’ve explained it to them once and they don’t understand, we need to keep reintroducing it and not assume that they get it.”
Another challenge, as noted by Dr. Walsh, is the increased demand on physician time and the desire for hospital systems to be more efficient in the number of patients seen per day, which results in shorter consultation times. “If you shrink the consultation time, there's less time to talk and interact in a way that perhaps we would like to have if we were sitting on the other side of that consultation. That makes good communication all the more important,” he emphasized.
Given the nature of palliative care, discussions about spirituality and religion are often relevant, particularly as patients move closer to the end of their lives. Dr. Johnson reflected that in her experience serving Black populations, “There might be a greater emphasis on miracles, religious prohibitions against limiting life-sustaining treatments, and redemptive beliefs about the value of suffering and pain.” She acknowledged that religious beliefs are typically viewed as a barrier to care for Black patients, but argued that the goal should always be to provide patients with the best care and support regardless of beliefs or faith. “We’ve found that when you support [patients’] beliefs as a medical team and engage in good communication, you actually see different outcomes with respect to decision-making,” she explained. “Those patients are more likely to use hospice care [rather than passing away] in the ICU (intensive-care unit).”
"That's why the interdisciplinary team is so important,” agreed Dr. Walsh. “No one person can encompass all of these different roles and areas of emphasis. So having an interdisciplinary team of nurses, social workers, psychologists, and others is extremely important in delivering high-quality care, like spiritual care in particular." Echoing this sentiment, Dr. Rhodes also commented on the importance of incorporating a patient’s religious community—if they have one, and if it is their preference—if at all possible.
In their closing remarks, the panelists reaffirmed several key points: framing palliative care as an additive service as opposed to a loss, tailoring palliative care to each patient’s goals and wishes, and prioritizing thorough training to prepare health care providers on patient communication to prepare them for difficult palliative care-related discussions.
Watch the full recording of this panel discussion and find more content related to the 2024-2025 ACCC President’s Theme on the ACCC website.
