AFTER BEING DIAGNOSED with acute lymphoblastic leukemia (ALL) in November 2017 at 66 years old, Nancy Delia spent more than three years in and out of the hospital, receiving multiple rounds of intensive chemotherapy. She also learned her leukemia was Philadelphia chromosome-positive, which meant her cancer had a genetic abnormality driving the cancer’s growth that could be treated with a targeted therapy. Despite the intensity of her treatments, she remembers how surprised her doctors were by her ability to bounce back after each infusion. When her cancer went into remission, she remained on the targeted therapy to keep the cancer in check, following up with her doctors periodically.
A retired corporate executive who lives in Lexington, North Carolina, Delia has always exuded a positive energy, which extended to the T-shirts she wore that displayed words such as “Love” and “Peace” while she received her chemotherapy infusions at Atrium Health Wake Forest Baptist in Winston-Salem, North Carolina. Eventually, years of treatment caught up with her. She felt sad and exhausted, and she couldn’t return to activities she once loved, such as yoga. “I felt like a used mop that hadn’t been washed,” she says.
When Delia returned to her oncologists for follow-up bloodwork, her doctors referred her to palliative care—a specialized type of medical care that aims to alleviate symptoms and improve quality of life for people with serious illnesses and their families. That first visit with the hospital’s palliative care director was transformative, she says, because the palliative care team created a safe space where she could express her challenges—and they worked to find ways to help her feel better. Delia went on to use a range of services to address everything from insomnia to her diet. “Palliative care became—for me—a safe place to share the emotional and physical challenges that you want to get better,” she says.
Palliative care can provide essential support for managing the challenges that come with any life-threatening diagnosis. Noting the importance of this kind of support, the American Society of Clinical Oncology (ASCO) recommends the integration of palliative care when treating advanced cancers, including blood cancers.
Blood cancer and its treatment often bring unique hurdles that can make this type of care especially valuable at earlier stages. Unlike solid tumors, which typically arise in a single organ or confined location, hematologic malignancies originate in the blood or bone marrow—key components of the circulatory and immune systems that reach every tissue and influence nearly every bodily function. Noting how many patients with blood cancer have high symptom burden, ASCO updated its palliative care guidelines in 2024 to encourage oncologists to refer people with any kind of hematologic malignancy to palliative care, while also acknowledging that evidence looking into palliative care delivery for those with blood-related cancers remains limited.
Research does show that people with blood cancer are more likely to be hospitalized as part of their treatment and less likely to receive palliative care than those with solid tumors, says Areej El-Jawahri, a hematologist-oncologist at Massachusetts General Hospital in Boston.
Confusion About Palliative Care
Part of the challenge of accessing these services comes from confusion over what palliative care is and isn’t. In many cases, palliative care, which is a broad term referring to services offered throughout treatment, is confused with hospice, which is a type of palliative care delivered at the end of life.
In 2016, Valarie Traynham’s doctors at what was then the Cancer Treatment Centers of America in Zion, Illinois—now called City of Hope Chicago—mentioned palliative care after her stem cell transplant for multiple myeloma. “When I heard the word, I was like, ‘Oh, no. I’m not ready for that yet,’ simply because I associated palliative care with hospice care, as do many cancer patients,” Traynham says.
But palliative care can and should be provided alongside curative treatment, says Thomas LeBlanc, an oncologist and palliative care physician at Duke Cancer Institute in Durham, North Carolina. Still, even oncologists misunderstand palliative care and may not refer patients to palliative care services unless the patient asks. By focusing on improving quality of life, symptom management and mental health, palliative care specialists provide “this extra layer of support [that] really helps people to live better and to get the care that they really want when they’re facing a serious illness like cancer,” he says.
Depending on the type of blood cancer, patients’ challenges will vary. In acute myeloid leukemia (AML), for example, the disease is so aggressive that patients can begin treatment a week or two after their diagnosis. Treatment can start with intensive chemotherapy, which comes with a hospital stay. This may be followed by stem cell transplants, in which patients receive infusions of stem cells to replace their immune system. The prolonged hospitalizations with these treatments make people feel “abducted by their illness,” says El-Jawahri, and the chemotherapies that blood cancer patients receive “are the most intense treatments we have in oncology.”
In other types of blood cancer, treatments offer long-lasting remissions, but patients still live in the shadow of what might happen next. For multiple myeloma, LeBlanc says, incredible treatment advances, including targeted therapies and stem cell transplants, have extended survival to a decade or more, but it’s still considered an incurable disease. “How do you deal with knowing you have an incurable cancer that you might be dealing with for a decade and all of the toxicities that come with that treatment?” LeBlanc says.
These treatments often have lasting side effects that erode quality of life. In fact, a 2020 review of palliative care studies in people with hematologic malignancies, of which El-Jawahri and LeBlanc were authors, found between 30% and 60% of those with blood cancer experience psychological distress during their treatment.
Starting Early
Studies that focus on palliative care in blood-related cancers suggest benefits that might seem obvious. One 2020 study divided 160 people with AML into two groups: one that received inpatient palliative care during hospitalization for their induction chemotherapy and subsequent hospitalizations, while the other received usual care, with referrals to palliative care when requested or when health care providers felt it was necessary. Those who received extra support, which included visits from palliative care specialists at least twice a week while hospitalized, reported better quality of life and fewer symptoms of psychological distress than those who received usual care. People who received palliative care were also less likely to receive aggressive treatment, such as chemotherapy, at the end of their life. Based on these findings, the study’s researchers, including El-Jawahri and LeBlanc, recommended patients with AML receive inpatient palliative care as the standard of care.
Palliative care has been understudied in those with multiple myeloma, even though the painful bone lesions and fractures that may accompany the disease make this population likely to benefit, says Oreofe Odejide, a hematologist-oncologist at Dana-Farber Cancer Institute in Boston.
With colleagues, she published research Aug. 19, 2024, in BMJ Supportive & Palliative Care that suggests people with multiple myeloma who receive palliative care within eight weeks of their diagnosis reported significant improvements in pain intensity and were better able to manage pain than those who received usual care. This is evidence, Odejide says, that palliative care “can help people live better in the context of their illness.”
When he gets questions from patients about when they should start palliative care, Grant Smith, a palliative care physician at Stanford Medicine in Palo Alto, California, always has the same answer: “The earlier the better.”
He also notes that palliative care doesn’t need to be an arduous commitment. For some, a single session can be enough to help process an unexpected test result. Others might want to meet monthly to talk about the pros and cons of future treatments that could be used if the cancer doesn’t respond to the current approach. “Health and palliative care can evolve and change over time, and that’s really normal to us,” Smith says. “If you need us, you can always reach out.”
Patients who have challenging effects from cancer or treatment can often find support by asking about palliative care.
Oreofe Odejide, a hematologist-oncologist at Dana-Farber Cancer Institute in Boston, broke the news to her patient: Even after a clinical trial, their acute myeloid leukemia was progressing. She started discussing treatment options when the patient stopped her to ask a question that surprised her: “When are we going to talk about palliative care?”
Encounters like this one inspired Odejide to study palliative care, but she notes oncologists may not always refer patients to palliative care.
Valarie Traynham, who was diagnosed with multiple myeloma in 2015, says patients may need to speak up and educate doctors. “Just because they don’t mention it to you doesn’t mean that it’s not available,” she says. “It may be that they can’t squeeze everything into that appointment.”
Traynham was treated at Cancer Treatment Centers of America in Zion, Illinois—now called City of Hope Chicago. City of Hope has on-site palliative care resources, but Traynham also sought out other services in her community, from support groups to free classes at other cancer centers. Now, as a patient ambassador, she visits a treatment facility to let people on active treatment know support is available.
It can be challenging for those with blood cancer to ask for help, particularly after they’ve finished treatment, says Areej El-Jawahri, a hematologist-oncologist at Massachusetts General Hospital in Boston. “I feel like this population suffers more in silence because they feel like they need to be grateful and that’s the only feeling they’re allowed to have,” she says. She encourages people to bring up palliative care with their physicians so they can get the care they need.
When discussing palliative care support, Traynham advises those with cancer to be specific about their needs and preferences. In her case, she asked her care team, “Is there something I can do other than taking another pill? I don’t want to leave here with another prescription.” As a result, her team connected her to services, including acupuncture and naturopathy to help with her fatigue and pain, and she even tried options like sound therapy that she might not otherwise have known about. “I found that was very helpful, and I was not even aware it existed until I went through cancer,” says Traynham, who continues to use palliative care services as needed 10 years after her diagnosis.
That said, many facilities are still in need of palliative care specialists—even as more of these programs are being offered at hospitals. Between 2000 and 2020, the percentage of hospitals offering palliative care more than tripled, according to a 2022 report by the Center to Advance Palliative Care. But while there are palliative care teams in more than 80% of hospitals with 50 beds or more, the number of palliative care providers equates to roughly 2 palliative care providers per 100,000 people.
To assess strategies to fill that gap, El-Jawahri and her colleagues are enrolling patients for a clinical trial at 20 institutions that will look at whether oncologists who receive training in palliative care approaches could serve AML patients as well as palliative care specialists. Far from replacing specialists, oncologists with palliative care skills “can potentially help us scale up the level of support we can give these patients,” El-Jawahri says.
Her team is also running a pilot study looking into the impact of a digital app for people with AML undergoing chemotherapy in the hospital. The app, DREAMLAND, incorporates psychotherapy-based tools and strategies to help patients cope with their diagnosis and treatment. “We always hear that patients feel lonely in this experience,” says El-Jawahri, who hopes the app will provide additional support while people are hospitalized and undergoing treatment.
For patients nearing the end of their lives, many studies have shown palliative care may improve quality of life and reduce intensive treatment during the last few months of life. But people with blood cancers have the lowest uptake of hospice care, says Odejide.
One of the barriers to hospice care is that Medicare provides a per-diem rate that does not cover the cost of blood or platelet transfusions, even though transfusions can help ensure people with blood cancer maintain quality of life. In a 2017 study published in Cancer, Odejide and colleagues analyzed 349 physician survey responses and found that more than half of hematologist-oncologists said they would be more likely to refer patients with blood cancer to hospice earlier if hospice care allowed the patients to continue receiving needed transfusions.
Odejide and others are studying approaches that integrate transfusions into hospice care. She notes there are also efforts to make change through policy: In June 2025, a bipartisan group of senators reintroduced the Improving Access to Transfusion Care for Hospice Patients Act, which would require Medicare to pilot a program that would create a separate payment for blood transfusions provided as part of hospice care.
Along with helping patients cope with the complex physical symptoms of treatment, palliative care services can provide a space to explore a person’s values in a way that can help them decide what treatments work in the context of their goals. For example, an older patient with AML may decide to pursue less intensive treatment to spend more time with their family instead of being in a hospital room in isolation. Typically, a person’s priorities determine treatments—and palliative care experts can help walk patients through these nuanced conversations. To make a recommendation, LeBlanc says, “I really need to come to understand who you are and what’s important to you.”
Traynham, who lives in Aurora, Illinois, has used palliative care services to address both physical symptoms and the emotional strain of treatment. Since being diagnosed with multiple myeloma at 42, she’s talked with social workers, financial navigators and faith-based counselors who have helped alleviate her stress and anxiety. She’s also used naturopaths and acupuncturists to help manage chemotherapy-induced menopause. “It’s whole-person care, not just focusing on the cancer,” she says. “They’re focusing on the mind, the body and the spirit.”
In North Carolina, Delia also continues to work with the palliative care team at Wake Forest, where she’s done art therapy and meets with a health coach and palliative care doctors. She hopes others can tap into these services—no matter where they are in treatment. “The biggest thing is just letting go of preconceived notions and allowing yourself to be in a space where you can receive. It’s so powerful,” Delia says.
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