Timely discussions about end-of-life preferences can ensure patients with advanced cancer receive care that aligns with their goals, experts say.
End-of-life discussions between patients and health care providers can help clarify patient values and priorities, improve patient satisfaction, and reduce bereavement distress for caregivers, said Kyle Neale, DO, medical director of outpatient palliative and supportive care at Cleveland Clinic in Ohio.
He added that end-of-life conversations can reduce health care utilization as well. A 2019 review linked end-of-life discussions with lower odds of acute care (odds ratio [OR] range, 0.43-0.69) or intensive care (OR, 0.26-0.68), lower odds of chemotherapy (OR, 0.41-0.57), and greater use of hospice (OR, 1.79-6.88) at the end of life among patients with advanced cancer.1
End-of-life discussions can also help build trust between patients and providers, help patients cope and give them a sense of control, allow for better symptom management, and guide medical decision making, said Debora Afezolli, MD, assistant professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York, New York.
Discussions Lacking, Barriers Identified
Research has suggested that end-of-life discussions are underused in oncology care.
In a 2021 study, Knutzen et al analyzed 423 encounters between 39 oncologists and 141 patients with stage IV malignant neoplasms to identify end-of-life discussions about “advance care planning, palliative care, discontinuation of disease-directed treatment, hospice care, and after-death wishes.”2 The researchers also analyzed a random sample of 31 doctor-patient dyads and 93 encounters to identify missed opportunities to engage in these conversations.
Qualifying conversations included any mention of end-of-life issues or a substantial discussion about these topics. A missed opportunity was defined as “lack of practitioner exploration of patient values, goals, or preferences in response to a patient statement regarding cancer progression, death, or disease experience, despite an opening in the conversation where such a discussion would have been appropriate or even necessary.”
The results showed that 5% of patient encounters included end-of-life discussions, and 38% of encounters included at least 1 missed opportunity.
Even in the context of integrated palliative care, the frequency of end-of-life discussions is suboptimal, according to a study published in 2019.3 Thomas et al found that advance care planning was discussed in 23.5% of oncologist visits and 41.2% of palliative care visits in a sample of patients with incurable lung and esophageal cancers who were receiving early palliative care integrated with oncology care.
“Patients and caregivers want to discuss end-of-life preferences, but several barriers have been reported by clinicians, including discomfort, fear of causing harm, and uncertainty over prognosis and timing of when to have these conversations,” Dr Neale explained. “Patients want us to be honest, compassionate, and optimistic. Those desires can sometimes feel conflicting.”
Among other fears, providers “may worry that addressing goals of care in patients with cancer will lead them to think their team is ‘giving up’ on them, when in reality, patients and families desire earlier and more detailed discussions of advance care planning,” Dr Afezolli said.4
Other barriers to effective end-of-life communication in oncology include inadequate provider training, lack of time, cultural barriers, and lack of confidence among providers.5 To reduce many of these barriers, Dr Afezolli pointed to the need for palliative skills training to begin earlier in providers’ medical careers.
Ways to Improve Communication
Providers can increase their comfort level and competence in conducting end-of-life communication through direct observation of end-of-life discussions or via online courses and workshops that provide guided case-based scenarios, according to Dr Neale.
“These conversations are procedures that can be taught and learned like any other procedure in medicine,” Dr Neale said.
Dr Afezolli noted that a range of provider communication courses are available, including those by VitalTalk and The Center to Advance Palliative Care. In addition, conversation guides such as the Serious Illness Care Program can facilitate these discussions.
A bill that was reintroduced in 2022, the Palliative Care and Hospice Education and Training Act (PCHETA), would increase training for the “next generation of palliative care specialists and enable palliative curricula and clinical training to expand in medical schools and among nursing and social work peers,” Dr Neale said. 6,7
Dr Afezolli noted that additional studies are needed to identify the optimal timing of end-of-life conversations in routine oncology care, as well as the best methods for documenting and accessing these discussions throughout various sites of patient care.
Dr Neale emphasized the importance of starting end-of-life conversations early.
“It’s never too early to explore a patient’s goals and values. We do that when helping to plan treatment around important life events,” he said. “Death is an important life event that requires similar planning.”
Disclosures: Dr Afezolli and Dr Neale reported having no disclosures.
1. Starr LT, Ulrich CM, Corey KL, Meghani SH. Associations among end-of-life discussions, health-care utilization, and costs in persons with advanced cancer: A systematic review. Am J Hosp Palliat. 2019;36(10):913-926. doi:10.1177/1049909119848148
2. Knutzen KE, Sacks OA, Brody-Bizar OC, et al. Actual and missed opportunities for end-of-life care discussions with oncology patients: A qualitative study. JAMA Netw Open. 2021;4(6):e2113193. doi:10.1001/jamanetworkopen.2021.13193
3. Thomas TH, Jackson VA, Carlson H, et al. Communication differences between oncologists and palliative care clinicians: A qualitative analysis of early, integrated palliative care in patients with advanced cancer. J Palliat Med. 2019;22(1):41-49. doi:10.1089/jpm.2018.0092
4. Toguri JT, Grant-Nunn L, Urquhart R. Views of advanced cancer patients, families, and oncologists on initiating and engaging in advance care planning: a qualitative study. BMC Palliat Care. 2020;19(1):150. doi:10.1186/s12904-020-00655-5
5. MacKenzie AR, Lasota M. Bringing life to death: The need for honest, compassionate, and effective end-of-life conversations. Am Soc Clin Oncol Educ Book. 2020;40:1-9. doi:10.1200/EDBK_279767
6. Palliative Care and Hospice Education and Training Act, HR 647, 116th Cong (2019-2020). Accessed January 3, 2023. https://www.congress.gov/bill/116th-congress/house-bill/647
7. Shelly Moore Capito. Capito, Baldwin introduce bipartisan bill to improve palliative and hospice care. Published May 19, 2022. Accessed January 3, 2023.