What really matters in end-of-life discussions? Perspectives of patients in hospital with serious illness and their families

Abstract

Background: The guideline-recommended elements to include in discussions about goals of care with patients with serious illness are mostly based on expert opinion. We sought to identify which elements are most important to patients and their families.

Methods: We used a cross-sectional study design involving patients from 9 Canadian hospitals. We asked older adult patients with serious illness and their family members about the occurrence and importance of 11 guideline-recommended elements of goals-of-care discussions. In addition, we assessed concordance between prescribed goals of care and patient preferences, and we measured patient satisfaction with goals-of-care discussions using the Canadian Health Care Evaluation Project (CANHELP) questionnaire.

Results: Our study participants included 233 patients (mean age 81.2 yr) and 205 family members (mean age 60.2 yr). Participants reported that clinical teams had addressed individual elements of goals-of-care discussions infrequently (range 1.4%-31.7%). Patients and family members identified the same 5 elements as being the most important to address: preferences for care in the event of life-threatening illness, values, prognosis, fears or concerns, and questions about goals of care. Addressing more elements was associated with both greater concordance between patients' preferences and prescribed goals of care, and greater patient satisfaction.

Interpretation: We identified elements of goals-of-care discussions that are most important to older adult patients in hospital with serious illness and their family members. We found that guideline-recommended elements of goals-of-care discussions are not often addressed by health care providers. Our results can inform interventions to improve the determination of goals of care in the hospital setting.

Figure 1:

Selection of study participants (patients and family members).

Figure 2:

(A) Concordance between patients’ stated preferences for life-sustaining treatment and prescribed orders for goals of care (agreement = 29.7%, κ = 0.11). (B) Concordance between family members’ stated preferences for life-sustaining treatment for the patient and prescribed orders for goals of care (agreement = 35.6%, κ =0.18). Blue highlighting shows concordance. A total of 21 patients and 11 family members were excluded because of missing preference data. Note: 1 = aggressive use of heroic measures and artificial life-sustaining treatments, including cardiopulmonary resuscitation (CPR), to keep patient alive at all costs; 2 = full medical care, but no CPR if the patient’s heart or breathing stops; 3 = a combination of the first 2 options (e.g., try to fix problems; if patient shows no improvement, switch to focusing only on patient comfort, even if it hastens death); 4 = doctors will focus on patient comfort and alleviating suffering, not on keeping patient alive by artificial means or heroic measures, such as trying to prolong life with CPR and other life-sustaining technologies; 5 = no documented goals of care.

Figure 3:

Concordance between (A) patients’ and (B) family members’ preferences for care at end of life and documented goals of care versus the number of components of determining goals of care that were reported to have been discussed. The line of best fit was calculated using logistic regression (odds ratios) and represents the predicted increase in concordance as more elements of goals-of-care discussions are addressed.