INTRODUCTION
Selection of a healthcare agent is a cornerstone of advance care planning 1. Clinical experience suggests that there are older adults who have not selected a healthcare agent because they cannot identify anyone to serve in this role. We sought to determine how often providers encounter such patients and to describe their characteristics, including their participation in other forms of advance care planning.
METHODS
Participants were English-speaking adults, 55 years and older, recruited from primary care and selected subspecialty care practices, and senior living communities in the greater New Haven area for Sharing and Talking about My Preferences (STAMP), a randomized clinical trial designed to evaluate behavior change approaches to promoting advance care planning 2. Exclusion criteria included moderate or severe cognitive impairment, active psychiatric illness, and severe hearing or vision loss. The study was approved by the institutional review boards at Bridgeport Hospital and Yale University. All participants provided written informed consent.
At the baseline interview, participants were given a definition of a healthcare agent and asked if they had named one. If they had not, they were asked whether they were thinking about doing so within the next six months. Those who had not named a healthcare agent and were not thinking about doing so within the next 6 months were asked the following question: “Keep in mind that a healthcare agent can be anyone you trust to make medical decisions for you. This person can be a family member or a friend or someone else who might help to manage your affairs. Can you think of someone who could be your healthcare agent?” Those who were unable to think of anyone were asked why they could not.
We used chi-squared and Fisher’s exact tests to compare participants who were not thinking about appointing a healthcare agent and could not think of one, to those who were not thinking about appointing a healthcare agent but could think of one. A two-sided p-value <0.05 was considered statistically significant. Analyses were performed using SPSS 27 (IBM Corporation, Armonk, NY).
RESULTS
Among 921 study participants, 193 (21.0%) had already appointed a healthcare agent and 559 (60.7%) were thinking about doing so within the next six months. There were 152 participants (16.5%) who were not thinking about naming a healthcare agent but could identify someone for this role. A total of 17 participants (1.8%) could not identify a healthcare agent.
As shown in Table 1, 11 of these 17 participants (65%) had family or friends but either did not trust them or did not feel comfortable speaking to them about medical decisions. Compared to persons who had not appointed a healthcare agent but could think of one, persons who could not identify a healthcare agent were more likely to be unmarried and to live alone (Table 2). They had poorer ratings of their physical health, financial well-being, and quality of life, and were more likely to suffer from depression.
Table 1.
Reasons that Participants Were Unable to Identify a Healthcare Agent
| Reason* | Participants unable to identify a healthcare agent (n=17) |
|---|---|
| “I have family and/or friends, but it is too hard to talk to them about making medical decisions for me”; n (%) | 6 (35) |
| “I have family and/or friends, but I cannot trust that they would be able to make the right medical decisions for me”; n (%) | 4 (24) |
| “Both previous responses are true”; n (%) | 1 (6) |
| “I really do not have anyone who could be my healthcare agent”; n (%) | 6 (35) |
*Participants who indicated that they could not think of someone to be their healthcare agent were asked, “Which of the following best describes your situation?”, and were given these options
Table 2.
Characteristics of Participants Who Had Not Appointed a Healthcare Agent
| Characteristic | Could not think of someone to be healthcare agent (n=17) | Could think of someone to be healthcare agent (n=152) | p-value* |
|---|---|---|---|
| Age, n (%) | |||
| 55–64 years | 4 (23.5) | 74 (49.0) | 0.09 |
| 65–74 years | 10 (58.8) | 51 (33.8) | |
| ≥75 years | 3 (17.6) | 26 (17.2) | |
| Female, n (%) | 11 (64.7) | 86 (56.6) | 0.35 |
| Non-White | 5 (29.4) | 48 (31.6) | 0.55 |
| Hispanic | 0 (0) | 5 (3.3) | 0.59 |
| Education, n (%) | |||
| High school or less | 4 (23.5) | 50 (32.9) | 0.31 |
| Some college or more | 13 (76.5) | 102 (67.1) | |
| Marital status, n (%) | |||
| Married or partnered | 0 (0) | 79 (52.0) | <0.001 |
| Divorced, widowed, or single | 17 (100) | 73 (48.0) | |
| Lives alone, n (%) | 12 (70.6) | 48 (31.6) | 0.002 |
| Self-rated health, n (%) | |||
| Poor or fair | 8 (47.1) | 25 (16.4) | 0.006 |
| Good, very good, or excellent | 9 (52.9) | 127 (83.6) | |
| Quality of life, n (%) | |||
| Worst possible, poor, or fair | 8 (47.1) | 22 (14.5) | 0.004 |
| Good | 6 (35.3) | 87 (57.2) | |
| Best possible | 3 (17.6) | 43 (28.3) | |
| Depressed, n (%)† | 5 (31.3) | 9 (6.1) | 0.001 |
| Finances, n (%) | |||
| Not enough or just enough money | 12 (70.6) | 51 (33.6) | 0.004 |
| Money left over every month | 5 (29.4) | 101 (66.4) | |
*Fisher’s exact tests for all comparisons except age and quality of life, where Pearson chi-square tests were used
†Participants were screened using the Patient Health Questionnaire-2, with scores ≥3 suggesting that depression is likely
With regard to other forms of advance care planning, 1 of 17 participants (6%) had a living will and 5 of 17 (29%) had discussed their views on quality versus quantity of life with someone.
DISCUSSION
In an earlier study using a national survey, we found that 7.5% of older adults had no one whom they would choose to make healthcare decisions for them 3. The present findings extend this work by demonstrating that, even among a select group of patients who were connected to outpatient care and consented to participate in research on advance care planning, a small but not insignificant number—nearly 2%—could not appoint a healthcare agent because they could not identify anyone to serve in this capacity.
This phenomenon was not limited to persons without friends or family 3. It is concerning that it was associated with poorer physical and mental health, since surrogate decision-makers are frequently needed during periods of acute illness 4, 5. Few participants who could not identify a healthcare agent had discussed their goals with someone, and only one had a written advance directive, even though written directives reduce high-intensity care when end-of-life decisions must be made by a stranger 6. Work is needed to define the optimal approach to advance care planning when healthcare providers encounter such patients.
Author Contribution
Study concept and design—Cohen, Fried
Acquisition of subjects and data—Paiva, Fried
Analysis and interpretation of data—all authors
Preparation of manuscript—all authors
Funding
This work was supported by the National Institute of Nursing Research (R01NR016007). Dr. Cohen was supported by a Paul B. Beeson Emerging Leaders in Aging (K76AG059987) award from the National Institute on Aging. Drs. Cohen and Fried were supported by the Claude D. Pepper Older Americans Independence Center at Yale University (P30AG21342).
Declarations
Conflict of Interest
The authors declare that they do not have a conflict of interest.
Disclaimer
The funding sources were not involved in the design and conduct of the study; the collection, management, analysis, and interpretation of the data; or the preparation, review, and approval of the manuscript.
Footnotes
ClinicalTrials.gov identifier: NCT03137459.
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
References
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