For many, the term “palliative care” is synonymous with “end-of-life care.” But for palliative care professionals like Abby Rosenberg, MD, MS, MA, chief of pediatric palliative care at Dana-Farber Cancer Institute, this only scratches the surface of what teams like hers have to offer.
“Palliative care is many things. At its core, it’s about allowing people to live their best lives for as long as possible, and to thrive in the midst of adversity,” says Rosenberg, who joined Dana-Farber as lead of the Pediatric Advanced Care Team (PACT) in January 2023. “It may seem counterintuitive to think about thriving when dealing with cancer, Many people don’t realize that’s a possibility, and instead think, ‘I just need to get through this.’ We know you don’t have to wait until post-treatment to have the quality of life you want. We’re here to help along the way.”
Palliative care helps patients using an interdisciplinary approach. Physicians, nurses, and social workers collaborate constantly to think about how to promote both quality and quantity of life in the context of each patient’s unique circumstance. This can cover a whole spectrum of needs, from helping with pain and symptom management, to aiding in sometimes overwhelming decisions patients need to make, to honoring a patient’s identity and what matters most to them as they decide the goals of their care.
The most important piece, Rosenberg says, is that the palliative care team is designed to be a partner to both the oncology team and the patient and their family. In some cases, families request palliative care directly, but since many assume palliative care is reserved only for end-stage illnesses, in most cases, the oncology team is the one driving the recommendation.
“A lot of times we find ourselves in the position to amplify someone else’s voice,” Rosenberg explains. “Sometimes that’s the patient or parent, if they hear something really scary and are struggling to find out how to talk about it with their doctor. Sometimes it’s the reverse, where an oncologist needs help coming up with language for how to talk about a problem with a patient. Either way, we’re there to help drive the conversation forward.”
The role as liaison between doctor and patient varies by day, and by patient. Some patients may need their palliative care team every day, and for those cases, the work is about actively managing symptoms and communicating between parties to solve issues and mitigate miscommunication. For other patients who may not have an immediate need, the focus becomes developing long-term relationships in case things get harder down the line.
“To put it simply,” Rosenberg says, “each day we ask, ‘Who are the patients we know, who are the patients we need to get to know, who do we need to help today, and how do we help them.’” Involved in these conversations at any given time are physicians, nurse practitioners, social workers, nurse coordinators and managers, administrative staff, and medical students or other health science trainees. Having worked on other palliative care teams, Rosenberg says this cross-functional approach is unique to Dana-Farber.
“Pediatric palliative care started at Dana-Farber, and because this program really set the precedent for everyone else, we understand that all of these components are necessary for care,” she explains. “We don’t make decisions as a team without having every perspective in the room. That matters, because if I’m talking to a family as a physician and I have a social worker next to me, they’ll hear the conversation from a completely different perspective. So, most of our discussions become about how everyone heard a conversation and how all interpretations can come together to inform decisions.”
For Rosenberg personally, a key piece of palliative care is resilience. She defines resilience as the process of harnessing resources needed to sustain well-being during times of adversity. For people with cancer, it’s one of the key ways people continue to live their best possible lives. Although everyone has the capacity for resilience, it sometimes takes a little bit of work. Resilience can be built by identifying “reproducible” resources—things like community support, stress management skills, and existential resources like faith or other methods for deriving meaning from hardship—and making them accessible to patients from the very beginning of their cancer journey.
Accessible resources are especially important for young patients, Rosenberg says. While older patients likely have experience with adversity and are better equipped to handle it, for children and young adults, cancer may be the first hard thing they’ve gone through, and they haven’t yet developed that toolbox of resilience resources. This is where palliative care can help.
“When I started in the field, so much emphasis was on alleviating suffering and relieving symptoms,” Rosenberg recalls. “As someone with a psychology and social science background, I wanted also to look at what tools we could give people to help them not only overcome adversity but thrive in the face of it. By stepping in right at the beginning and giving young people the resilience resources we know helped others, we take away the additional burden of having to figure it out as they go.”
One way Rosenberg and her team have sought to provide these resources is through the development of PRISM (Promoting Resilience in Stress Management), a resilience-coaching program designed in partnership with adolescents and young adults with serious illness. The program includes resources for stress management, goal setting, cognitive restructuring, and meaning making. The program is already working, as clinical trials have shown improvements in youth resilience, hope, and quality of life, with sustained impact for several years.
Rosenberg was adamant that that future lies in both continued clinical excellence and innovative research.
“When it comes to the evidence-base, most of what we know in palliative care is based on adults,” she explains. “Historically, survival rates for adults were not particularly high, so the emphasis of palliative care research was on end-of-life care. Today, 80% of kids with cancer will survive, so what we learn about geriatric patients no longer applies. The conversation is different and the way we think about decision making is different, so the nuances in palliative care need to become more specific to pediatrics.”
But this research can only continue progressing with the proper funding, which can be difficult when faced with what Rosenberg calls “messy science.” In other words, while patients and families who have received palliative care will attest to its value, that value is hard to quantify.
“How do you measure compassion? How do you measure the impact of making an impossible decision possible?” Rosenberg asks. “It’s doable, but the only way that can happen is with the proper resources.”
Given those resources, Rosenberg is certain that the minds at Dana-Farber—from the statisticians and research coordinators to the scientists and clinicians—can continue to advance the field and change the way the world views pediatric palliative care.
“The level of commitment to innovation at Dana-Farber is unparalleled,” Rosenberg remarks. “Since I’ve gotten here, I’ve had ideas that hadn’t been done before, and I’ve asked questions that sound bananas to some people, and I never get a ‘no.’ Most times, I get a, ‘I’ve never done that before, let’s try it.’ The commitment here to thinking creatively, to collaborating, that is something I’ve never seen before.”
She adds: “It is the greatest job in the world to think about how to develop together to meet the mission of amplifying voices and enabling kids with cancer to thrive, and I’m lucky I get to do it at Dana-Farber.”
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