There’s been a great deal of talk about integrating palliative care into oncology; it was even the theme of the Presidential Address by Lynn Schuchter, MD, at ASCO 2024. But how and when should that integration occur?
It’s not possible to pair every patient with advanced cancer with a palliative care clinician in 2025, and probably not for many years to come. There simply aren’t enough trained palliative care nurses, nurse practitioners, social workers, or physicians. According to data from the National Institutes of Health (August 1, 2014), there are “623,405 people living with metastatic breast, prostate, lung, colorectal, or bladder cancer or metastatic melanoma in the United States, and that number is expected to increase to 693,452 by the year 2025.” Only 105,000 total palliative care–trained physicians, nurse practitioners, and nurses are working in the United States today: 7600 board-certified palliative care physicians, 80,000 palliative care nurse practitioners, and ~18,000 palliative care nurses. Data on the specific number of trained palliative care social workers are unavailable.
However, there may be enough palliative care experts for all if oncology teams consult them only at critical points during cancer treatment. Such times might include when refractory symptoms develop at or are preventing diagnosis; when patients need help to cope with the failure of one treatment and deciding which treatment to try next; anytime that symptoms are refractory; or when treatments are no longer working, and hospice care is being considered. Temel et al1 reported at ASCO 2024 that “stepped” palliative care—scaling care as needed for patients with advanced lung cancer—was not inferior to preset, once-per-month visits with a palliative care clinician. While the stepped model is, potentially, a more scalable solution, the study points out that the research staff needed to monitor the patients closely to identify exactly when to “step up” their palliative care.
Oncology nurses and patient navigators are in the ideal position to identify which patients most need palliative care services, and when. To illustrate who might need palliative care, and when, I’ll share stories of patients and their families who I saw at very different times in their courses. I won’t use their real names or any identifying information.
Louis, a 54-year-old former smoker, did not endear himself to the office staff when they first met him. His primary care physician referred him because of a finding on a chest x-ray done for a new job after he had a positive purified protein derivative test. Louis, who worked as a carpenter, was finding it more and more difficult to complete his tasks because of what he called a “stiff shoulder.” The x-ray showed a lesion in the right upper lobe of the lung. Films of the shoulder showed no bony lesions. He would not agree to a staging CT scan or a biopsy as he said he couldn’t lie down. He was irritable, and his wife reported he hadn’t slept for weeks.
The oncology team tried ibuprofen with oral oxycodone, then with hydromorphone prn, and referred him to orthopedics for a shoulder injection, all with no effect on the pain. They decided to consult palliative care to help them control Louis’ pain so they could complete his diagnostic workup and start therapy.
When we saw him, Louis was sitting upright on the examination table, holding his right arm bent at the elbow with his left hand. He would not let me move it for an examination. However, he could shrug his shoulders without additional discomfort, and I detected enlarged supraclavicular lymph nodes deep in the fossa on the right. I suspected they represented metastatic tumors that were eating into his right brachial plexus. The pain in his “shoulder” was actually severe, referred neuropathic pain from the brachial plexus lesions.
We asked the team to try a dose of dexamethasone 10 mg to determine whether steroids would enable him to undergo diagnostic testing. He experienced significant relief, and he agreed to take bid steroids (4 mg PO at 8 am and 2 pm to minimize insomnia) along with pneumocystis jirovecii pneumonia prophylaxis while he underwent CT scans, subsequent biopsy, and initiation of therapy for adenocarcinoma of the lung. He still required prn opioids, but they were now effective.
Louis’ wife of 30 years reported to our social worker that he was a changed man, and the clinic staff agreed. Now that he wasn’t in excruciating pain, he was cheerful and well rested. Louis even helped the staff with other patients in the treatment area when he could. We weaned off his steroids over several weeks as his therapy took effect and signed off, letting the team know we’d be happy to reconsult if needed.
Felicia was a 25-year-old woman I met when her ovarian carcinoma became metastatic to her peritoneum. She had been diagnosed with locally advanced ovarian cancer a year earlier and underwent surgery followed by intraperitoneal and systemic therapy. Felicia and her partner, Carmen, had 3 young children, aged 7, 5 and 3. Felicia worked as a model for a fashion designer, in her salon. The designer supported Felicia throughout her cancer treatment and welcomed her back when she felt well enough to resume work.
Felicia had been doing well for many months when she noticed that the clothes she was always able to model no longer fit. She worried she was overeating and saw a nutritionist, who advised a weekly juice cleanse. She took laxatives, but nothing helped; her abdomen continued to swell unaccountably.
When Felicia developed nausea and then vomiting, Carmen insisted they go back to her oncologist. Films revealed a bowel obstruction, and Felicia was admitted to the hospital. The oncologist put her bowel at rest, inserted a nasogastric tube, and ordered antiemetics and pain medication. But after several days, there was no progress. The oncology team consulted palliative care for help with the medical management of her small bowel obstruction in hopes of avoiding surgery.
When we met Felicia, she was, understandably, demoralized. While we suggested medication changes that had a chance of reversing the obstruction (ie, dexamethasone and changing from ondansetron, which is constipating, to olanzapine for nausea), our primary intervention was to help her regain a sense of herself, so she could participate fully in next steps decision-making if the obstruction didn’t resolve. Our social worker helped her grieve the changes in appearance of her young body. She taught Felicia and Carmen how to talk with their children and support them during this difficult time.
We also prepared Felicia and Carmen for the family meeting with the oncology team to discuss whether they wanted to start total parenteral nutrition (TPN) and have a venting gastrostomy tube (G-tube) inserted. We had the time to review Felicia and Carmen’s hopes and worries, the realities receiving TPN would entail for the family, and the upsides and downsides of a venting G-tube. At the family meeting, we all agreed that TPN and the G-tube were consistent with Felicia’s goals and hopes. They could help her regain her strength and minimize future admissions for obstruction. When Felicia was discharged home, she and Carmen met regularly, not with palliative care, but with the outpatient oncology social worker who continued the supportive work on Felicia’s self-image and with the children.
If we had enough staff, we’d love to partner with you to support all patients with advanced cancer and their families. But we don’t. So, how can you leverage our capacity most strategically?
For patients with refractory pain, dyspnea, nausea, constipation, or confusion, we can do an assessment and initiate a treatment plan for the symptoms. In select cases, such as patients who need escalating doses of methadone for neuropathic pain or antipsychotics for delirium, we can continue to follow them with you, at least until you and they feel that a hospice program would better meet their goals.
We’re also great to have around when the team needs to break bad news to your patients or their loved ones. Imagine, for instance, that Felicia stops responding to therapy and that the TPN is causing fluid overload and not providing her with an improved quality of life. Or maybe the son of an 85-year-old mildly demented mother with myelodysplastic syndrome tells you he wants “everything” done, but all of you think her code status needs to change to DNR/DNI. We can join you in preparing for and then attending these tough meetings. We know how to speak to your patients in ways that will help them and their families to embrace the new reality, such as, “We’re in a different place now.”2
When a patient you’ve cared for over 10 years has run out of therapy options but is likely to say, “You can’t give up on me!” when you break the news, we can be by your side. We can assure your patient: “Your team will never give up on you! But they won’t suggest treatments that wouldn’t prolong and might even shorten your life.” Our “procedure” is communication, and we are the ideal partners for your team at these branch points in a patient’s course when emotions can run high on both sides. We can help you and your colleagues prevent compassion fatigue and burnout by sharing your burdens with you.3
For those of you who don’t yet have access to a palliative care partner, please make use of the materials on my website, www.janetabrahm.com, for advice on symptom management, communication techniques, special issues faced by LGBTQ+ patients and those hoping for miracles, and caring for patients at the end of life and into bereavement. Sign up for our newsletter and let us know what additional information we can send you.
Janet L. Abrahm, MD, FACP, FAAHPM, is a professor of medicine at Harvard Medical School, a former practicing hematologist and oncologist, and the founder of the palliative care service at Dana-Farber Cancer Institute in 2001. She is an internationally recognized expert in supportive and palliative care for patients with cancer and the author of the newly updated Comprehensive Guide to Supportive and Palliative Care for Patients with Cancer. Dr Abrahm is an award-winning clinician and educator in palliative care. Learn more about Dr Abrahm and her work at janetabrahm.com.
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