While there is a trend toward greater patient involvement in healthcare decision making, the debate about whether to discuss prognosis with terminally ill patients continues. On one hand, advocates of the end-of-life conversation say that the availability of a candid but sensitive conversation about prognosis is vital to the patient’s ability to conduct informed decision making regarding 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 often cite concern over robbing a patient of hope – which refers to emotional distress and quality of life during the end-of-life. These arguments are often rendered as expert opinion, but did you know these effects have been measured in a prospective, longitudinal cohort study published in the Journal of the American Medical Association?1
Alexi Wright, MD and colleagues hypothesized that end-of-life discussions would be associated with greater psychological distress. They enrolled 332 cancer patients and 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. 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 what the researchers qualified as “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 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. Patient-reported end-of-life discussions show an indirect but strongly positive effect on patient quality of life and caregiver bereavement outcomes by influencing the patient’s ability to choose the care options best for him or her.
Keep in mind also that electing palliative care does not correlate with a shortened life. In fact, among patients who qualify for hospice, palliative care consistently correlates with a life extended by days to months.2-9 The empirical evidence suggests that end-of-life conversations do not directly harm a patient’s emotional state and indirectly benefit the patient’s quality of life. The empirical evidence also suggests that electing palliative care exclusively, when the prognosis is six months or less, does not shorten life. It appears that an appropriately timed, sensitive end-of-life conversation in keeping with the expressed wishes of the patient is in the best interest of patient and family.
Attention hospice providers: All hospice professionals know that hospice is generally underutilized, both in prevalence and length of enrollment. Are your doctors getting these facts? Evidence-based arguments with sufficient repetition (a core principle of marketing) prove an effective and available means for improving the hospice referral patterns of your doctors. Let Brazzell Marketing Agency help. Start here: Hospice Newsletters
- 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.
- Connor S, Pyenson B, Fitch K, et al. Comparing hospice and nonhospice patient survival among patients who die within a three-year window. J Pain Symptom Manage. 2007 Mar; 33(3): 238-46.
- Yun Y, Lee M, Kim S, et al. Impact of awareness of terminal illness and use of palliative care or intensive care unit on the survival of terminally ill patients with cancer: prospective cohort study. J Clin Oncol. 2011; 29: 2474-2480.
- Keyser E, Reed B, Lowery W, et al. Hospice enrollment for terminally ill patients with gynecologic malignancies: impact on outcomes and interventions. Gynecol Oncol. 2010: 118 (3): 274-7.
- Christakis N, Iwashyna T, Zhang J. Care after the onset of serious illness: a novel claims-based dataset exploiting substantial cross-set linkages too study end-of-life care. J Palliat Med. 2002; 5: 515-529.
- Christakis N. Predicting patient survival before and after hospice enrollment. Hosp J. 1998; 13: 71-87.
- Connor S. Hospice: Practice, pitfalls, and promise. Philadelphia, PA: Taylor and Francis, 1998. 118-119.
- Forster L, Lynn J. The use of physiologic measures and demographic variables to predict longevity among inpatient hospice applicants. Am J Hosp Care. 1989; 6: 31-34.
- Azoulay D, Jacobs J, Cialic R, et al. Opioids, survival, and advanced cancer in the hospice setting. Journal of the American Medical Directors Association. 2011; 12 (2): 129-134.