Modern healthcare practices informed patient involvement in decision making. Nevertheless, the debate about whether to discuss life expectancy (or prognosis) with terminally ill patients continues.1 On one hand, advocates of the end-of-life conversation say the availability of a candid, sensitive conversation about prognosis is vital to a person’s ability to participate in informed decision-making. Important decisions include finances, guardianship, power of attorney, and end-of-life care. On the other hand, opponents of making end-of-life discussions a standard of care commonly cite concern over robbing a patient of hope. These arguments are often rendered as expert opinion, but few know that these effects have been measured in a prospective, longitudinal cohort study published in the Journal of the American Medical Association.2
End-of-Life Discussions Do Not Rob a Patient of Hope
Alexi Wright, MD and colleagues hypothesized that end-of-life discussions would be associated with greater psychological distress. They enrolled 332 cancer patients. Researchers surveyed them and their caregivers until end of life, a median of 4.4 months. Caregivers were further surveyed up to 6.5 months later. Who received end-of-life discussions seemed to depend on which facility delivered their care more than on any patient-specific variable such as cancer type, religion, sociodemographic characteristics, etc. End-of-life discussions were not directly related to patient reports of feeling “depressed,” “sad,” “terrified,” or “worried.” Likewise, these discussions were not associated with meeting any DSM-IV criteria for a mental disorder. In short, end-of-life discussions had no direct effect, positive or negative, on the patient’s emotions.
End-of-Life Discussions Improve Quality of Life
However, end-of-life discussions had very important, indirect effects on patient quality of life. Patients who report receiving the end-of-life discussion prove much less likely to elect “aggressive” treatments and much more likely to enroll in hospice for longer than one week. Patient quality of life decreased with increasing numbers of aggressive medical therapies. For instance, on the 36-item Medical Outcome Study Short-Form Health Survey, patients who received no aggressive care had a mean quality of life score 39% higher than patients who had three or more aggressive therapies.
Patient Quality of Life Increases with Longer Hospice Enrollment
The data also shows that patient quality of life increased with longer enrollment in hospice. Patients who received hospice care for two months or more had a health-related quality of life that was 23% higher than patients who did not receive hospice or who received hospice for a week or less. Furthermore, multiple caregiver bereavement outcomes showed a direct and important relationship with the patient’s quality of life scores. End-of-life discussions show an indirect but strongly positive effect on patient quality of life and caregiver bereavement outcomes. They accomplish this by influencing the patient’s ability to choose the care options best for him or her.
- MacKenzie AR, Lasota M. Bringing life to death: the need for honest, compassionate, and effective end-of-life conversations. American Society of Clinical Oncology Educational Book. 2020 Mar 24;40:476-84.
- Wright A, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008; 300 (14): 1665-73.