In a recent publication in the Journal of the American Medical Association Network Open, researchers conducted a prospective cohort study to explore the patterns of goals of care among patients and their caregivers during the last 2 years of the patient’s life and to examine the correlations of the goals of care with the characteristics of the patient caregiver.
The authors wrote, “Understanding goals of care for terminally ill patients at the end of life is crucial to ensure that patients receive care consistent with their preferences.”
The researchers conducted surveys every 3 months from July 8, 2016, until the patient’s death or until February 28, 2022. Data from the last 2 years of the patients’ lives were evaluated, and patient-caregiver dyads were comprised of patients with stage IV solid cancer and their caregivers. A total of 210 patient-caregiver dyads were included. The average patient age was 62.6 years, and 51.4% were reported as male. Among caregivers, the average age was 49.4 years, and 62.9% were women.
The authors noted that the first objective of this study was to study the patterns of patient and caregiver goals of care in the last 2 years of life, concentrating on life extension versus symptom management and life extension versus treatment cost containment.
The second objective was to explore the relationships of these goals with patient and caregiver characteristics utilizing the actor-partner interdependence framework.
The results revealed that, on average, 34% of patients and 29% of caregivers ranked symptom management over life extension, while 24% of patients and 19% of caregivers prioritized life extension.
Regarding cost containment versus life extension, 28% of patients and 17% of caregivers preferred prioritizing cost containment, while 26% of patients and 35% of caregivers chose prioritizing life extension.
The results also revealed that goals of care did not change as the patient became more terminal. Data also indicated that patients prioritized management of symptoms, especially if they were experiencing more significant symptom burden, worse sense of spiritual well-being, and accurate prognostic awareness, and if caregivers reported accurate prognostic awareness, lesser impact of caregiving on finances, and poorer caregiving self-esteem.
Regression analyses indicated that when patients with advanced cancer had a lower quality of life, the goals of care centered on prioritizing symptom management. Additionally, older patients and their caregivers supported an inclination to contain treatment costs over life extension.
The authors wrote, “The results revealed that when faced with a choice, about half of the patient-caregiver dyads preferred a moderate approach, balancing life extension with symptom management or cost containment. These findings demonstrate that while considerations of quality of life and financial concerns remained salient, the goal of life extension still held significance for many dyads.”
The authors also concluded that their findings on participant characteristics affect tailoring end-of-life care to individual preferences.
They also added, “Healthcare professionals could prioritize comprehensive symptom management strategies over potentially life-extending treatments, particularly for patients with higher symptom burden and poor spiritual well-being. Ensuring accurate prognostic awareness among both patients and caregivers is pivotal to avoiding aggressive treatments.”
Finally, the authors noted that social and family support, including quality of relationship and burden on caregivers, could function as factors in recognizing care goals.
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