Who Do Patients Turn to for Palliative Care? The Answer Might Surprise You
By Melanie Marshall
Many people diagnosed with serious illness depend on their family physician, rather than highly trained specialists, for the comfort and care that will carry them through the end of life, recent research shows.
Several studies out of University of Michigan (U-M) underscore how big a role primary care physicians have in delivering palliative care, a patient-centered approach to managing suffering and improving quality of life for people with serious or life-limiting disease. The studies also reveal a critical need among family doctors for more palliative training.
The research was led by Claire Ankuda, MD, MPH, who from 2015-17 served as a Robert Wood Johnson Clinical Scholar at the university’s Institute for Healthcare Policy and Innovation. Ankuda’s research is important because the need for palliative care is set to mushroom in the next few decades as a “silver tsunami” of baby boomers experience serious illness.
Many Generalists Say They Provide Palliative Care
In one study – published in March 2017 in the Journal of the American Board of Family Medicine – Ankuda’s team found that 1 in 3 primary care physicians reported providing palliative care to patients who were seriously ill or nearing the end of life. That affirms the deep and long-lasting connection family physicians have with their patients, said Ankuda, who trained in family medicine at the University of Washington and is now a palliative fellow at Icahn School of Medicine at Mount Sinai in New York.
“Primary care physicians really take pride in caring for the person over their whole lifespan,” Ankuda said. “And often patients with serious illness want to be cared for by the doctor who has known them for years, decades, or even their whole lives.”
The family practice clinicians delivering palliative care, however, were more likely to be older, white, male, and rural, according to the study, which analyzed data from nearly 11,000 doctors who were renewing their certification with the American Board of Family Medicine in 2013. The age of those providers is a concern because it may limit access to primary palliative care in the future, even as the number of patients needing such care skyrockets, the authors found. Recent research shows there’s just one palliative specialist for every 1,200 patients with serious illness – a patient pool of roughly 90 million that is set to double in the next 25 years (CAPC, 2014).
Shortfalls in Delivery Persist
Many experts believe family physicians are ideally positioned to fill that gap. “There will never be enough specialists to treat everyone who needs palliative care, but I would argue, nor should there be,” Ankuda said. “In terms of primary care, this really should be our bread and butter.”
Still, some hurdles remain. Further research by Ankuda and her colleagues – published in the Annals of Family Medicine and the Journal of the American Geriatrics Society – suggest family physicians need more training in palliative principles to better support seriously ill patients. The studies found that primary care physicians were less likely to refer dying patients to hospice than physicians who saw patients in the hospital, even in cases of advanced dementia in which patients had serious functional limitations.
Ankuda said there are several possible reasons for that. The close relationship between family physicians and patients might make accurate prognostication about end of life more difficult, or “primary care physicians may also see entering into hospice as a break in the clinician-patient relationship, and the patient might not want that either.”
She said the need for training is crucial, not just because it means better support for patients but because it aids family physicians in work that is often integral to their own well-being and sense of self. “I think one thing that has struck me so much in this research is that it’s an incredibly meaningful and important part of practice to take care of patients with serious illness,” Ankuda said. “This is why a lot of us went into medicine… and being able to do it well requires education and training.”
Palliative Training Crucial for Family Physicians
Programs targeting that need include Primary Palliative Care Skills, an online curriculum recently launched by the California State University Shiley Institute for Palliative Care. The series of nine self-paced courses includes detailed instruction on concepts like communication, prognostication, and pain and symptom management, including a module on safely prescribing opioids – a topic Ankuda said is particularly important.
“There are many situations where opioids can be helpful and are really necessary to alleviate suffering,” she said. “Being able to do that safely takes skill. One thing I worry about (amid the opioid epidemic) is that it just becomes ‘never use them’ when we actually need physicians to just be able to use them better. That takes education.”
The Primary Palliative Care Skills courses were shaped by national leaders in primary and palliative medicine, including Michael Rabow, MD, FAAHPM, Professor of Clinical Medicine in the Division of General Internal Medicine at UC San Francisco, and Associate Director of the UCSF Palliative Care Leadership Center. The Primary Palliative Care Skills courses can be purchased as an entire series, or in thematic bundles.
“This curriculum allows all physicians caring for patients with serious illness to expand their level of comfort and efficiency with some of the most important parts of care—symptom management and communication around difficult topics,” said Rabow, a member of the Institute’s Curricular Task Force. “All of us need to be able to do the basics and without wasting any time or effort.”
For more information visit csupalliativecare.org or call 760-750-4006.