“What’s In a Name?”¹ – Well, A Lot, Actually…

Supportive Care, Palliative Care, Hospice Care – patients and clinicians (often) consider them one and the same and want to avoid thinking about them. That is because for many of us, these terms connote failure—not just failure of cancer treatment but also personal failure. Patients, family members, and clinicians alike feel that when they consult these services, they have “lost the fight.”

Palliative Care in particular, has mistakenly come to be associated with care of the dying…perhaps because many don’t fully know what “palliative” means. When the term “palliative” appears in chemotherapy or radiation therapy treatment records, it just means “non-curative.” Designating a treatment regimen “palliative” appears not to bother treating physicians, but the concept of “Palliative Care” apparently does.

Dr. Bruera’s group at MD Anderson Cancer Center realized that calling their service a palliative care service was counterproductive. When they changed the service’s name from Palliative Care to Supportive Oncology, they caused a major change in the behavior of their oncology colleagues. The oncologists referred more patients to the Supportive Oncology Service and referred them earlier in their cancer course (2,3). Many Palliative Oncology services, including ours, have similarly changed their names to Supportive Oncology. My hope is that we get the same results as the MD Anderson group achieved.

In this newsletter, I thought it might all become clearer if we consider which services Supportive / Palliative Care and Hospice offer to patients and their families. To do that, let’s consider which of the services might best fit the needs of the following three (fictional) patients.

Sam is a 35-year-old man with newly diagnosed metastatic embryonal cell carcinoma. He presents to the oncologist with severe back pain that radiates into his groin and down his legs, leaving him bedridden for the past week. MRI was negative for spine disease or cord compression, but showed multiple large retroperitoneal metastases, the largest measuring 4 x 6 cm.

Keisha is a 55-year-old woman with recurrent platinum-resistant ovarian cancer, admitted for her third small bowel obstruction in the past 6 months. She is receiving TPN and is not a surgical candidate. She and her partner Lashonda have three children, 25, 30 and 35 who do not live locally. A venting G tube is planned this admission.

Tran is a 75-year-old man with advanced castration resistant metastatic prostate cancer. He is ECOG 3 and has recently progressed through all therapy options. He is hoping to improve enough to be eligible for a Phase I trial. Tran is cared for by his wife and 2 children who live locally. He has ongoing pain from the bony metastases despite around-the-clock acetaminophen and ibuprofen, MS Contin 30 mg po bid, and MS IR 7.5mg po q4h prn. His constipation has been refractory to daily senna and PRN Miralax.

Which service(s) would be of benefit to these patients and their families?

Sam
Sam would benefit from Supportive/Palliative Care services. Palliative care is designed expressly for patients like Sam, whose symptoms at diagnosis currently preclude his receiving curative therapy. Palliative care can be added to oncologic therapies at any time in the disease course. Palliative care clinicians will address his refractory pain, anxiety, the existential crisis he is facing with this disease, and explore whether there are social or spiritual supports he can access as he starts treatment.

Keisha
It is reasonable to think Keisha could benefit from supportive, palliative, or hospice services. She likely has a prognosis of ~ 6 months if her cancer takes its usual course, so she would be hospice eligible. But hospice programs can’t afford the TPN she needs to stay alive. They are reimbursed ~$250 per day to provide the following services: nurses, social workers, chaplains, aides, durable medical equipment, medications, and, if she needs it, oxygen. At this point, TPN is still benefiting her, not adding to her ascites or increasing her leg edema. And after she has a venting G tube placed, TPN will help her resume her active life with her family.

Referring Keisha to outpatient palliative/supportive care with ongoing VNA services makes the most sense. The palliative/supportive care team can continue her symptom management and begin the conversations with her and her oncologist about her goals of care (i.e. her hopes, worries, feelings about resuscitation, burdens vs benefits of ongoing therapies). The palliative care clinicians will notice when the TPN seems more of a burden than a benefit for her, collaborate with her oncology team to help her acknowledge that stopping TPN makes sense then, and see the benefits of enrolling in a home hospice program for the months ahead.

Tran
Tran qualifies for and needs home hospice care now. Paradoxically, hospice is his best hope for improving his stamina enough to qualify for a Phase I trial. The previous therapies took a toll, and while he is on a treatment break, he can enroll in home hospice care and receive all the supports they provide. He has enough family to do the 22 hours of care not covered by the 2hr/day home hospice aide. And the hospice team will improve the management of his pain and his constipation and provide support to his family for the anticipatory grief they are experiencing. The oncologist, as his physician in hospice, stays involved in Tran’s care either in-person or via Virtual visits. Should he improve enough, Tran can disenroll from hospice and enter a Phase I trial.

I welcome your questions on any of the above. I do realize that over half of community oncologists don’t have a palliative care partner. What I suggest is that you ask your local hospice program whether they offer a palliative care consultation service for your patients undergoing active therapy. My hope is you will be pleasantly surprised. If not, and you have a particularly vexing problem, please reach out to me directly.

And of course, please continue to check Resources here on my website to see the array of topics we address for palliative and supportive care for patients with cancer in the areas of Pain & Symptom Management, Communication Techniques, Special Topics, and End of Life & Bereavement.

References

1. Romeo and Juliet, by William Shakespeare
2. Fadul N, Elsayem A, Palmer JL, et al. Supportive versus palliative care: what’s in a name?: a survey of medical oncologists and midlevel providers at a comprehensive cancer center. Cancer. 2009;115:2013-21.
3. Dalal S, Palla S, Hui D, et al. Associations between a name change from palliative to supportive care and the timing of patient referrals at a comprehensive cancer center. Oncologist 2011;16:105-111