End-of-Life Discussions Can ‘Lay Out a Roadmap’ of Patient Wishes and Avoid Unnecessary Cancer Care

Talking about the end of life can be difficult, but these conversations are crucial for patients with incurable cancer to have with their clinicians, experts say.

End-of-life discussions are difficult but essential for patients with late-stage cancer, and having them early on and throughout the treatment process can ensure that patient’s wishes are met, experts said.

“It's really helpful for them to lay out a roadmap of what's most important and how they want things to go,” explained Dr. Kerin Adelson, associate professor, chief quality officer and deputy chief medical officer at Yale University’s Smilow Cancer Hospital in New Haven, Connecticut, in an interview with CURE®. “When you don't do that, patients and doctors fall into a pattern of continued treatment, and every time that treatment fails the patient, we discuss the next treatment, instead of really taking a step back and saying, how do you want to spend your time?”

Adelson and colleagues recently conducted research on the use of systemic (drugs that move throughout the body) cancer treatment at the end of life. Their findings, which were published in JAMA Oncology, showed that while end-of-life chemotherapy use has declined in recent years, there has been an uptick of newer treatments such as immunotherapy and targeted therapy being used at this stage.

Prior research has demonstrated that chemotherapy administered at the end of life can have harmful effects. Not only does it decrease quality of life, but it also can result in increased health care costs to patients and their families without improving survival.

“Although we’ve seen chemotherapy rates decline, immunotherapy (use has increased). So now the next step is (determining) … are we seeing detriments for immunotherapy use?” lead study author Maureen E. Canavan, an associate research scientist at the Yale School of Medicine, told CURE®. “It speaks to the need to address clinical practice if we’re just replacing (chemotherapy) with another toxic agent rather than finding something that’s better for patients. The overall goal … is all about improving patient experience, even if it’s the experience at the end of life.”

In the study population, which consisted of patients with metastatic urothelial carcinoma (bladder cancer), non-small cell lung cancer and melanoma, immunotherapy administered at the end of life did not prolong survival, Adelson explained, noting that patients are not utilizing hospice care when they are still in active treatment.

This continuation of treatment toward the end of life can lead to an increase in hospitalizations (and the costs that come with it) and potentially a “more medicalized or less peaceful death,” according to Adelson.

One remedy for this situation is for patients and providers to engage in discussions about end-of-life goals early in the disease process. Adelson recommends these conversations start once a patient is diagnosed with an incurable cancer.

READ MORE: Navigating the End of Life Does Not Have to Be a Solitary Journey

“When end-of-life care goes the best — and I've seen this in my practice and it's what I aspire to as an oncologist — is we have those discussions recurrently and repeatedly throughout a patient's illness, and I know, as their doctor, from early on what it is they're going to want,” Adelson said. “So when the time comes, when we need to start to talk about shifting treatment or shifting goals, that foundation is laid and the patient and I are partners in that transition and it's not coming at the patient out of left field when they're not prepared.”

Hospice care is given to patients who are deemed of having six months or fewer to live, though Adelson said that the conversations about when to enter hospice should happen well before that.

The goal of hospice care is symptom management, and care is aligned with patients’ goals while addressing physical and spiritual needs.

“We need to holistically think about the patient, their family and that total package,” Canavan said. “Medicalizing their end of life is not the solution, and having those goals-of-care conversations and that patient-led approach to how they want to live out the remainder of their days is so crucial.”

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