Family/Patient-Related Factors Main Barriers to End-of-Life Discussions
Family- and patient-related factors were identified as the most significant barriers to early end-of-life discussions, as well as to the timely discontinuation of cancer-directed therapies in the palliative setting, according to the results of a multicenter survey of oncologists in Ontario, Canada. The survey results were presented by Josee-Lyne Ethier, MD, Division of Medical Oncology, Princess Margaret Cancer Centre, Toronto, Ontario, Canada, and colleagues at the 2015 Palliative Care in Oncology Symposium.
The early documentation of end-of-life preferences in patients with advanced cancer is associated with more appropriate and less aggressive end-of-life care, according to Dr Ethier.
“In advanced cancer patients, documenting end-of-life preferences and discontinuing active cancer-directed therapies in a timely manner is important to minimize suffering,” stated Dr Ethier and colleagues. “Ideally, end-of-life planning is done in an ambulatory setting, before patients become severely unwell.” However, barriers to these discussions exist.
The investigators sought to expand the reach of the work currently being conducted in the Decision Making about Goals of Care for Hospitalized Medical Patients (DECIDE) study to incorporate the oncology population.
The DECIDE study evaluates barriers to initiating early end-of-life discussions in critically ill hospitalized patients. Dr Ethier and colleagues adapted the existing survey from this critical care and internal medicine context and applied it to the ambulatory oncology setting.
The surveys were distributed via paper and secure online survey platforms to physicians practicing primarily in medical oncology and malignant hematology in cancer centers in Ontario.
The physicians were asked to rank, on a numerical scale (0, extremely unimportant; 7, extremely important), the importance of patient/family, physician, and external barriers to having end-of-life discussions with patients and their families, and the importance of these same barriers to the discontinuation of cancer-directed therapies. The responses were analyzed from all of the completely finished surveys using descriptive statistics.
Of the 79 participants, 30 responded to the survey, for a response rate of 38%. Responses for “extremely important” or “very important” barriers were pooled and were considered to be the most significant barriers.
Biggest Barriers Related to Patients and Their Families
The majority of respondents identified the patient- and family-related barriers to be the most significant obstacles to initiating end-of-life discussions. The most common barrier, which was reported by 69% of the respondents, was patients’ difficulty accepting their prognosis and/or indicating a desire to be “aggressive.”
Other frequently reported barriers in this category included family members’ difficulty in understanding or accepting their loved one’s prognosis, and family members’ difficulty in understanding the limitations and complications of life-sustaining therapies.
When identifying barriers to discontinuing active cancer-directed therapies, 63% of the respondents rated patients’ inflated expectations of further cancer treatment benefit as a very important or an extremely important barrier, and 47% identified refusal by the patient or family for referral to early palliative care as very or extremely important.
“Almost half of the respondents felt a lack of guidelines on discontinuing cancer-directed therapies were an important external barrier,” stated Dr Ethier and colleagues. The majority (>85%) of respondents were very willing or extremely willing to initiate, lead, and finalize end-of-life discussions with patients and their families.
The investigators suggest that further research is needed to better comprehend these perceived barriers, and to compare them with actual patient preferences and perceptions about planning and cancer care at the end of life.
“Targeted interventions to address some of these barriers could then be developed,” Dr Ethier and colleagues added.