For many medical providers across the country, palliative care services can be an unknown option for several patients and their families.
A few reasons for that are a lack of awareness surrounding the benefits of palliative care, as well as the misconceptions about what this type of care offers for patients. As such, the model can go underutilized for those who could benefit from it the most.
Cathy Wozniak is the executive director of Hospice & Palliative Care of Martha’s Vineyard in Massachusetts (HPCMV). Alongside the organization’s medical director, Dr. Lisa Vieira, she shared recent statistics, showcasing just how imperative palliative care options can be for many Americans.
As reported by the Center to Advance Palliative Care, Wozniak relayed, “Ninety million Americans live with serious illness. People don’t really understand it; even though it’s a medical speciality, there is some confusion.”
According to 2023 statistics from the World Health Organization, an estimated 56.8 million people in the United States, including 25.7 million in the last year of their life, require palliative care annually. Yet, generally only about 14% receive those services. Vieira says that in Massachusetts, nearly 88% of seriously ill patients need palliative care consultation services.
Vieira — who has worked in both palliative care and hospice for the last 12 years and is a board certified physician in this specialty — acknowledged that, even among her medical colleagues, confusion persists surrounding what palliative care truly is.
“What our goal is, is to try to spread the word and educate people of what palliative care is,” she said. “Additionally, the organization is working to set up a palliative care consultation service at the local hospital, which serves the island’s 20,530 year round residents. “When we get this palliative care consultation service up-and-running, we can have those longer conversations with patients in a much easier way.”
Dr. Alexia Torke, a palliative care physician and research scientist with the Indiana University Center for Aging Research at Regenstrief Institute, adds that, historically, gaps exist in the referral processes for many patients, specifically those with cancer, heart disease, lung disease and Alzheimer’s.
“Other physicians and clinicians often do not know the role of palliative care or have negative perceptions of it,” Torke said. “We address this both by education, but most importantly through building relationships with clinicians who take care of seriously ill patients.”
Torke noted that she often asks her patients at their first visit if they know anything about palliative care, and can then help to educate them on the matter to better address their needs.
Wozniak and Vieira say that, while there is fragmentation between medical providers and palliative care referrals, they focus on a place of educating those in the medical field to better streamline the processes.
“There’s not a lot of coordination of care among providers — some of the physicians a patient sees may not be necessary,” Wozniak said, also noting that this coordination can help reduce hospital readmission for patients.
She added that, due to mobility challenges, in-home palliative care programs can be very beneficial to reaching those needing palliative care, and reaching them sooner.
Since starting to host educational panels with local medical providers, Wozniak and Vieira have been able to bring more awareness to the local medical community. Recently, Vieira said, many medical providers have told her they wished they knew about palliative care options and its benefits much sooner.
“It can be hard to teach an old dog new tricks, but it’s important to increase education and communication,” she said. “Change is hard, but there has to be some way to educate providers into thinking of how to advance patients toward palliative care options.”
For Torke, education is key, both for patients and those in the medical field, be they established or novice.
“Having our trainees see what palliative care does and get in the habit of referring to us as appropriate is a great way to change the culture and foster knowledge and acceptance,” she said. “If they refer one patient to us and the patient has a good experience then they’re more likely to refer in the future. Trust and relationships are the foundation of good medical practice.”
While there is some progress in terms of educating the current and next generations of medical providers, Vieira says that it is still an “uphill battle.”
“Primary care providers could send us more referrals, and we could do more at-home consultations with patients,” she said. “But it’s hard to get everyone in the same place and paying attention … We need to get through to one another earlier in the process.”
