Seriously Ill Patients’ Willingness to Trade Survival Time to Avoid High Treatment Intensity at the End of Life

Patients with serious illnesses are often asked whether they would prioritize relief of pain and suffering or longevity if these 2 goals were to come into conflict.¹ A significant majority state that they would prioritize relief of pain and suffering.² However, it is difficult for clinicians and family caregivers to operationalize such preferences without knowing the limits of these preferences or how much time alive patients would be willing to sacrifice in the service of their palliative goals. We sought to quantify trade-offs between survival time and avoidance of intensive care near the end of life among seriously ill hospitalized patients.

We conducted a prospective cohort study within the context of a randomized trial of different approaches to decision-making about life support interventions that has previously been reported.³ The trial enrolled patients 60 years and older with serious oncologic, cardiac, and pulmonary illnesses who were hospitalized at the Hospital of the University of Pennsylvania between July 2015 and March 2016. Patients were presented with a survival time trade-off question (Box) asking them to imagine they would live up to a maximum of 5 more years and to then pick between a future in which they would (1) live for the whole 5 years, be in and out of the hospital 3 times in the last 2 months of life, and receive life support in an intensive care unit (ICU) for 3 weeks at the end of life with moderate pain and discomfort; or (2) live for 4 more years, be admitted to the hospital once in the last month of life, spend the last several weeks of life at home drifting in and out of awareness with mild pain and discomfort, and die at home. If a patient elected the scenario involving 5-year survival and death in an ICU, the patient was then asked the same question but with the alternative scenario positing survival of 4 years and 3 months, then 4 years and 6 months, then 4 years and 9 months. The University of Pennsylvania Institutional Review Board approved this study, and written informed consent was obtained from participants. For the differences in demographic characteristics between groups, we used χ² tests. All P values were 2-tailed, and significance was set at P less than .05. All analyses were conducted using Stata version 15 (StataCorp).

Of 180 patients presented with the survival time trade-off question, 156 patients (86.7%) said they would trade a full year of time alive to avoid the scenario in which they were in the ICU for 3 weeks at the end of life and died on life support. One patient (0.6%) said he would trade 9 months of time. Three patients (1.7%) said they would trade 3 months of time. Twenty patients (11.1%) said they would not trade even 3 months of time. In univariate analysis, the only statistically significant difference in characteristics between the group of patients willing to trade survival time and the group of patients unwilling to trade survival time was that a higher proportion of patients in the group that was willing to trade had acute leukemia (35 [21.9] vs 0; P = .02) (Table).

The vast majority of hospitalized patients with serious illnesses in our study indicated a willingness to trade at least 1 year of a 5-year lifespan to avoid a scenario in which they died in the ICU with moderate pain and suffering at the end of life. Because the trade-offs people may be prepared to make between avoidance of pain and suffering and longevity can evolve as patients get closer to death,⁴ we enrolled patients who were seriously ill, hospitalized, and generally older. Their responses suggest potential insights to be gained by asking patients to quantify the strengths of their preferences for receiving or avoiding intensive treatment at the end of life and the trade-offs they might make to live longer or avoid prolonged intensive medical care. Limitations of this study include the fact that the patients were recruited from a single center and were predominantly male, white, and married or partnered. These factors may limit generalizability.

When seriously ill patients become unable to speak for themselves, knowledge of the patients’ previously stated willingness to trade time alive to avoid intensive medical treatment at the end of life could inform decision-making in a variety of domains, including the use of prolonged mechanical ventilation, dialysis, and cardiopulmonary resuscitation.

Accepted for Publication: February 16, 2020.

Corresponding Author: Emily B. Rubin, MD, JD, MSHP, Division of Pulmonary and Critical Care Medicine, Massachusetts General Hospital, 55 Fruit St, Bullfinch Building, Boston, MA 02114 (erubin3@partners.org).

Published Online: April 6, 2020. doi:10.1001/jamainternmed.2020.0681

Author Contributions: Dr Rubin had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study concept and design: Rubin, Halpern.

Acquisition, analysis, or interpretation of data: Rubin, Buehler.

Drafting of the manuscript: Rubin, Halpern.

Critical revision of the manuscript for important intellectual content: Rubin, Buehler.

Statistical analysis: Rubin.

Study supervision: Halpern.

Conflict of Interest Disclosures: None reported.

Funding/Support: Financial support for this study was provided in part by grants from the National Heart, Lung, and Blood Institute and the Center for Health Incentives and Behavioral Economics.

Role of the Funder/Sponsor: The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.