Kathy Brandt has spent more than half of her life working in the fields of palliative care, hospice, aging, and caregiving. She has held leadership positions at the National Hospice and Palliative Care Organization and was tapped to write and edit the fourth edition of the National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care. She even met her wife Kim Acquaviva, a professor of nursing at the University of Virginia, when both were working for a Florida hospice.
But in Brandt’s successful career as a nationally recognized expert, nothing has acquainted her with palliative health care more intimately than her decision to seek it for herself.
JoNel Aleccia reports for Kaiser Health News that Brandt, 53, was diagnosed with stage 3 ovarian clear cell cancer in January. It is a rare form of cancer, often resistant to chemotherapy, and Brandt was told she likely had months to live. After the shock of the diagnosis wore off, she promptly made a decision to pursue palliative care, which the Center to Advance Palliative Care defines as “specialized health care for people living with a serious illness … focused on providing relief from the symptoms and stress of an illness.”
Palliative care can be provided in tandem with curative care. In a letter to the editor of the New Yorker, Kate Meyers, a senior program officer with CHCF’s High-Value Care team, explains that “palliative care is additive — an extra layer of support — and it can serve an essential function in the experiences of patients and their families.”
While many patients receive palliative care alongside curative treatment, others opt out of disease treatments when they determine that the burden of the treatment outweighs the benefit. Aleccia writes that Brandt is “100% certain” about refusing chemotherapy, knowing that it would be futile. Instead, she is focusing on palliative care to relieve symptoms like pain and sleeplessness. “It’s what Kim and I have been working on for 30 years,” Brandt told Aleccia. “We need to not be scared of death.”
Raising Awareness of the Benefits of Palliative Care
The significance of Brandt’s decision to pursue palliative care and be vocal about it cannot be overstated. A new study in the Journal of Palliative Medicine found that an estimated 71% of US adults have never heard of palliative care. The researchers emphasize that “addressing this awareness gap is a priority to change norms around using palliative care services.”
A large majority of Californians want to talk to their physician about their wishes for care at the end of life but haven’t done so. A statewide survey in 2011 found that 79% of Californians would want to discuss their wishes for medical treatment with their physician if they became seriously ill. However, only 7% say their physician has asked about their wishes. CHCF funded that survey and is supporting an updated version to be released in the fall on attitudes and experiences with serious illness and end-of-life care with a focus on low-income populations.
Physicians may be reluctant to have these tough conversations with their patients because they feel unsure about how to handle the topic, according to a national survey of physicians commissioned by the John A. Hartford Foundation, the Cambria Foundation, and CHCF. While 89% of respondents said it was extremely or very important for providers to talk to patients about the options for care that best fit their personal wishes, only 29% reported having formal training in talking with patients and families about end-of-life care. Nearly half of surveyed physicians said they frequently or sometimes feel unsure of what to say during such conversations.
This lack of formal training has left many physicians with a misunderstanding of palliative care, said Jennifer S. Temel, MD, clinical director of thoracic oncology at Massachusetts General Hospital. “I think there are still a lot of misperceptions on the part of clinicians — physicians and nurses — that palliative care and hospice care are synonymous,” Temel told the American Society of Clinical Oncology. “Many of them still believe that if you are administering cancer-directed therapy, you can’t offer palliative care at the same time.”
Teaching Doctors About Palliative Care
There is a growing movement to educate physicians and the public about the benefits of palliative care. In an interview with journalist Rob Waters, Katy Butler, author of the recently published book The Art of Dying Well, said, “I think everyone should have palliative care from the first inkling of serious illness. [Early] palliative care … can improve quality of life throughout the course of a serious illness and prepare people for less medicalized deaths.”
Access to palliative care in California is improving. In 2014, former Governor Jerry Brown signed into law SB 1004, which requires Medi-Cal managed care plans to provide access to palliative care. Since then, the number and capacity of inpatient, clinic, and home-based palliative services in California has grown. CHCF has supported California public hospitals in implementing or expanding palliative care services and supported payers and provider organizations working together to provide community-based palliative care services, partnerships that were spurred by the 2018 implementation of SB 1004.
Exposure and education are key to demystifying palliative care for patients, experts say. When Amy Berman, a senior program officer with the Hartford Foundation, was diagnosed with terminal breast cancer, she talked to her oncologist, who was trained in palliative care communications, about the treatment options available. “If people aren’t participating in these conversations and decisions around their own health, they’re going to be guaranteed only to get the care and treatment that someone else thinks they should get,” Berman told the Center to Advance Palliative Care. She chose not to undergo aggressive treatments for the cancer and relies on palliative care to help her feel her best and live the life she wants. While less than 20% of patients with her diagnosis survive five years, Berman continues to work full time and travel more than nine years after the diagnosis.
Sunita Puri, MD, medical director for palliative care at the Keck Medical Center and Norris Cancer Center of the University of Southern California, said people should be exposed to realistic portrayals of serious illness and palliative care. “I think people feel an obligation, if they identify as a fighter, to keep trying any and every treatment offered to them — sometimes without a full appreciation of the risks of those treatments or whether those treatments might keep them in a place they don’t want to be, like an intensive care unit, instead of having the opportunity to go home,” Puri said in an interview with NPR. The result can be tremendous suffering related to medical treatments that don’t change the course of the disease.
Puri calls upon journalists to confront the “fight or give up” dichotomy. “Journalists have tremendous power in our country to tell stories that go against the grain, and that can inspire conversations that we wouldn’t otherwise be having,” she said in a webinar with the Center for Health Journalism. Puri thinks more journalists should be writing about people who have had good experiences with palliative care. When people learn about others who are open to palliative care or whose attitudes about it have evolved, they may seek out palliative care for themselves or their loved ones.
And that is the legacy Kathy Brandt wants to leave behind. “The story of palliative care is still being written,” Brandt said. “It’s so underutilized, and it can be so life-changing for people, and there are so many things that block people’s access to it.”