Outcome Goals and Health Care Preferences of Older Adults With Multiple Chronic Conditions

Key Points

Question  What are the common goals and health care preferences of older adults with multiple health conditions?

Findings  In this cross-sectional study, 163 older adults reported 459 goals, most commonly encompassing activities with family and friends (24.2%), shopping (6.1%), exercising (4.6%), and living independently (4.4%). Medications most commonly cited as helpful were nonopioid pain medications (65.5% of users), sleep medications (52.9% of users), and inhalants (42.2% of users), whereas statins (25.8% of users) and antidepressants (32.5% of users) were the most commonly reported bothersome medications.

Meaning  Participants identified realistic and doable goals and health care preferences; this information can inform decision-making.

Importance  Older adults with multiple chronic conditions (MCCs) vary in their health outcome goals and the health care that they prefer to receive to achieve these goals.

Objective  To describe the outcome goals and health care preferences of this population with MCCs.

Design, Setting, and Participants  This cross-sectional study included participants in the Patient Priorities Care study who underwent health priorities identification from February 1, 2017, to August 31, 2018, in a primary care practice. Patients eligible to participate were 65 years or older, English speaking, and had at least 3 chronic conditions; in addition, they used at least 10 medications, saw at least 2 specialists, or had at least 2 emergency department visits or 1 hospitalization during the past year. Of 236 eligible patients, 163 (69%) agreed to participate in this study. Data were analyzed from August 1 to October 31, 2020.

Exposures  Guided by facilitators, participants identified their core values, as many as 3 actionable and realistic outcome goals, health-related barriers to these goals, and as many as 3 helpful and 3 bothersome health care activities.

Main Outcomes and Measures  Frequencies were ascertained for outcome goals and health care preferences. Preferences included health care activities (medications, health care visits, procedures, diagnostic tests, and self-management) reported as either helpful or bothersome.

Results  Most of the 163 participants were White (158 [96.9%]) and women (109 [66.9%]), with a mean (SD) age of 77.6 (7.6) years. Of 459 goals, the most common encompassed meals and other activities with family and friends (111 [24.2%]), shopping (28 [6.1%]), and exercising (21 [4.6%]). Twenty individuals (12.3%) desired to live independently without specifying necessary activities. Of 312 barriers identified, the most common were pain (128 [41.0%]), fatigue (45 [14.4%]), unsteadiness (42 [13.5%]), and dyspnea (19 [6.1%]). Similar proportions of patients identified at least 1 medication that was helpful (130 [79.8%]) or bothersome (128 [78.5%]). Medications most commonly cited as helpful were pain medications, including nonopiods (36 of 55 users [65.5%]) and opioids (15 of 27 users [55.6%]); sleep medications (27 of 51 users [52.9%]); and respiratory inhalants (19 of 45 [42.2%]). Most often mentioned as bothersome were statins (25 of 97 users [25.8%]) and antidepressants (13 of 40 users [32.5%]). Thirty-two participants (19.6%) reported using too many medications. Health care visits were identified as helpful by 43 participants (26.4%); 15 (9.2%) reported too many visits. Procedures were named helpful by 38 participants (23.3%); 24 (14.7%) cited unwanted procedures. Among 48 participants with diabetes, monitoring of glucose levels was doable for 18 (37.5%) and too bothersome for 9 (18.8%).

Conclusions and Relevance  Participants identified realistic and actionable goals while varying in health care activities deemed helpful or bothersome. The goals and health care preferences of more diverse populations must be explored. Previous work suggests that clinicians can use this information in decision-making.

Clinical decision-making can be difficult for the two-thirds of older adults who have multiple chronic conditions (MCCs).¹ These individuals are excluded from many clinical trials and may accrue less benefit or greater harm than suggested by disease guidelines because of coexisting conditions.^2-6 Most treatments are recommended to address disease-specific outcomes or survival, whereas older adults with MCCs vary in the outcome goals that they most desire.^7-9 Furthermore, the medications, health care visits, testing, procedures, and self-management tasks entailed in treating MCCs require investments of time and effort that may be burdensome and conflict with what patients are willing and able to do.^10-12

There is growing awareness of the need to transition health care, particularly for persons with MCCs, from treating single diseases in isolation to health care that is aligned with patients’ priorities (ie, values, goals, and preferences).^5,9,13-17 Most tools available for eliciting patients’ goals and preferences were developed in the context of advanced illness or specific conditions or populations.^18-29 Some of these approaches may be less useful to older adults weighing the benefits, burdens, and tradeoffs associated with long-term management of several chronic conditions. Goal attainment scaling is appropriate for this latter population, although some applications include goal categories representing medical and supportive care, which are better considered care preferences that support attainment of desired life goals.^22-29

In response to the need for approaches that support the alignment of clinical decision-making with the priorities of older adults with MCCs, a diverse group of patients, health care systems experts, and clinicians developed Patient Priorities Care (PPC).^13,14 Aimed at both patients and clinicians, PPC begins with a structured process in which patients work with a member of the health care team to identify the outcome goals that they most desire to achieve based on what matters most to them (ie, their values-based outcome goals) and to specify what they are willing (or unwilling) to do to achieve those outcomes (ie, their health care preferences).^30-32 Clinicians then use the results of these facilitated discussions to align their decisions and care with patients’ priorities.^31-34

Evidence from a recent study³¹ indicated that the PPC framework was feasible to patients and clinicians and was associated with increased care aligned with patients’ priorities and decreased treatment burden and unwanted health care. The aim of the present study is to describe the outcome goals and health care preferences identified by older adults in this study.²⁶

Details of the PPC study have been described elsewhere.^30,31,33 Briefly, 10 primary care clinicians from a large multisite primary care practice in Connecticut invited their patients to participate in the PPC study during a routine visit. Relevant to the present cross-sectional study, patients who agreed to participate met with 1 of 2 trained members (K.H.-B. and an advanced practice registered nurse) of the practice to identify their priorities. The institutional review board at the Yale University School of Medicine, New Haven, Connecticut, approved this study; oral consent was obtained for all participants. We followed the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) reporting guidelines for cross-sectional studies.³⁵

Inclusion criteria consisted of being 65 years or older, the ability to speak English, and having at least 3 chronic conditions; in addition, participants used at least 10 prescription medications, were seen by 2 or more specialists, or had at least 2 emergency department visits or 1 hospitalization during the past year. Exclusion criteria included advanced dementia, hospice eligibility, receiving dialysis, or nursing home residence. Potentially eligible participants were identified through electronic health record data. Of the 236 eligible patients treated by clinicians at the PPC practice, 163 (69.1%) agreed to participate in the PPC study and were included in the present analysis.

Development of the process to identify patients’ priorities was described previously.³⁰ Details of the identification process are included in the facilitator manual.³⁶ To summarize, a priorities facilitator (either an advanced practice registered nurse or a case manager [K.H.-B.] trained to elicit patients’ priorities) met with patients at the practice site, at home, or by telephone from February 1, 2017, to August 31, 2018. Priorities identification required 20 to 30 minutes, usually during a single session. The process began with identifying values, that is, who and what matters most. We started with values because they tend to remain stable, whereas outcome goals often vary with life and health changes.^37,38 To identify personalized values, patients were asked questions such as “What does enjoying life mean to you?” and “When you have a good day, what happens?” When needed, facilitators used prompts drawn from 4 previously identified values domains, including social connections and relationships, enjoying life and productivity, functioning and independence, and managing health and symptoms.^37,38 Facilitators then helped patients to identify as many as 3 outcome goals that reflected their values and were specific, actionable, and realistic enough to inform clinical decision-making. To link the outcome goal to their values, facilitators told participants: “Goals should be based on your values, or what’s important to you in life. We’ve talked about what matters most to you. Now let’s talk about how you would show that you are living out those important things. Let’s identify activities that you want to be able to do that reflect what is important to you.” Participants were informed: “A health goal can be something you want to keep doing, or something you would like to be able to do more of. Goals need to be specific and realistic so that your doctor can work with you on making sure your health care is focused on achieving that goal.” Prompts and probes were used to get the goals as specific, actionable, and realistic as possible. Participants then were asked what health problems or symptoms they believed most interfered with or were barriers to their identified outcome goals. Participants next identified as many as 3 health care activities (ie, medications, health care visits, procedures, diagnostic tests, and self-management tasks) that they thought would help most with their outcome goals, were doable, and were not too difficult or bothersome and as many as 3 health care activities in these categories that they found burdensome, bothersome, unhelpful, or that they wanted to stop if possible. Together these were considered health care preferences.

Facilitators recorded the results in a template that included participants’ key values, outcome goals, and any barriers to achieving them and their health care preferences. Completed templates were transmitted to the electronic health record. A sample completed template is in the eFigure in the Supplement.

Demographic data were ascertained during the baseline telephone interview and verified by electronic health record review. Chronic conditions were determined from the problem list and medications from the medication list of the primary care practice’s electronic health records at the time of study enrollment. Medications included those prescribed for chronic conditions. Medications used for time-limited conditions (eg, antibiotics) were not included.

Participant characteristics were summarized with descriptive statistics. The outcome goals and health care preferences were obtained from the deidentified priorities templates. One author (M.E.T.) initially combined goals that reflected similar activities. The other authors reviewed and reached consensus on the goal groupings listed. The health care preferences were aggregated into the predetermined categories of medications, health care visits, procedures and tests, and self-management tasks. Frequencies were ascertained for the outcome goals and health care preferences.

Participant baseline characteristics are shown in Table 1. Among the 163 participants, most were White (158 [96.9%]) and women (109 [66.9%]), with 54 men (33.1%) and a mean (SD) age of 77.6 (7.6) years. Of the 140 participants for whom educational attainment was ascertained, 59 (42.1%) reported at least some college. Participants had a median of 4 (interquartile range, 3-5) chronic conditions.

The 163 participants identified 459 outcome goals (Table 2). Participants’ intent was unclear for an additional 5 responses, exemplified by: “I want to be able to get up in the morning.” The most commonly mentioned outcome goals encompassed activities with family and friends, involving both meals (36 [7.8%]) and other events, such as visiting or playing with grandchildren (75 [16.3%]; total, 111 [24.2%]). Other commonly cited outcome goals included shopping (28 [6.1%]) and exercising as an enjoyable and productive activity (21 [4.6%]).

Goals could be specific, such as “I want to go down to the dining room to eat and socialize each day.” In other cases, they were less specific, such as, “I want to help my sister every day.” Twenty individuals (12.3% of participants and 4.4% of goals) noted the desire to live independently or stay in their home but did not identify specific activities needed to ensure this could happen. Some outcome goals expressed a desire to continue a current activity (eg, “I want to continue to babysit my grandchildren every day”), whereas others reflected the aspiration to do something they were unable to do for health reasons, such as “I would like to be able to play golf again.”

Many health goals addressed more than 1 value. Most often this involved a function, such as personal mobility, cooking, driving, or traveling, that supported a goal related to relationships, enjoying life, or productivity (eg, “I want to cook and host my children for dinner each month” or “I want to continue to drive to the opera house 4 times a year with my friends”).

Although only 4 individuals reported outcome goals related to managing health or living longer—all of whom linked their health to meaningful events—participants did identify a health-related barrier to 312 of 459 outcome goals (68.0%). The most commonly mentioned barriers were pain (128 [41.0%]); fatigue, lack of energy, or poor sleep (45 [14.4%]); gait imbalance, unsteadiness, or neuropathy (42 [13.5%]); and shortness of breath and dizziness (19 [6.1%] each). Some participants identified multiple barriers to their goal.

Health care activities that participants perceived as helpful and doable are shown in Table 3, whereas those activites that they believed were burdensome or bothersome are listed in Table 4. Similar numbers of participants mentioned at least 1 medication that was helpful and acceptabale (130 [79.8%]) and at least 1 medication that was bothersome or unhelpful (128 [78.5%]). Thirty-two participants (19.6%) believed they were taking too many medications; 57 (35.0%) reported having bothersome symptoms from their medications but did not mention specific medications (Table 4).

Medications used to treat pain were mentioned most commonly as helpful, including nonopioids (36 of 55 users [65.5%]) and opioids (15 of 27 users [55.6%]) (Table 3). Also commonly cited as helpful were benzodiazepine and nonbenzodiazepine medications for sleep (27 of 51 users [52.9%]) and inhalants for respiratory symptoms (19 of 45 [42.2%]). The percentages of medication users mentioning bothersome effects were 9 of 55 users of nonopioids (16.4%), 10 of 27 users of opioids (37.0%), and 8 of 51 users of sleep medications (15.7%); no users mentioned bothersome effects for inhalants (Table 4).

Five of 97 participants receiving statins (5.2%) mentioned benefits or lack of adverse effects (Table 3), whereas 25 (25.8%) ascribed bothersome effects to the medication (Table 4). A high proportion of recipients also reported bothersome effects for antidepressants (13 of 40 users [32.5%]) and insulin (9 of 16 users [56.3%]) (Table 4).

Primary and specialty care, rehabilitation, and other health care visits were identified as helpful by 43 participants (26.4%): “My pulmonologist saved my life” and “Physical therapy helped with shoulder pain” (Table 3). Fifteen participants (9.2%) reported having too many visits or clinicians: “I’m tired of going to so many doctors” (Table 4).

Procedures and tests were mentioned as acceptable and helpful by 38 participants (23.3%). They mentioned both past procedures (“I’m very pleased with my recent knee surgery”) and ones they hoped to have (“I would like to try hearing implant surgery”) (Table 3). Twenty-four participants (14.7%) cited proposed surgical procedures they did not want, with orthopedic procedures mentioned most commonly (12 [7.4%]) (Table 4).

Diet was the most commonly mentioned helpful self-management task (20 [12.3%]) (Table 3); only 6 participants (3.7%) reported diets as burdensome or unwanted (Table 4). Among the 48 patients with diabetes, monitoring of glucose levels was acceptable for 18 (37.5%) (Table 3), although not as frequently as prescribed (“I do my blood sugar check every other day, every day is too much”), and too bothersome to 9 others (18.8%) (Table 4). Other commonly cited activities included continuous positive airway pressure, which was helpful to 14 and bothersome to 9 participants and assistive devices (helpful to 21 and bothersome to 6 participants). The total numbers of participants using continuous positive airway pressure or assistive devices were unavailable.

Identifying outcome goals that are realistic and actionable appears to be feasible among older adults with MCCs. No participant-selected goals were grandiose or unrealistic, likely because arriving at realistic and actionable goals given each person’s health status was part of the facilitation process. Goals often were linked to multiple values as expected, and reported previously, for meaningful human activities.³⁹ Functional activities, such as driving or cooking, were often mentioned as ways to connect to people, enjoy life, or be productive. Knowing the values underlying goals can be helpful in patient-clinician communication and decision-making. For instance, if a patient’s outcome goals are not achievable or realistic given their health status, a conversation might include, “I worry that you might not be able to continue driving your friends to the theater. I wonder if there are other ways to fulfill your desire to see shows and connect with your friends that could be more achievable.”³⁴

Although few outcome goals focused solely on managing health, most participants did cite health problems, symptoms, or impairments that interfered with their outcome goals. These findings suggest that managing health might best be considered as a way to help achieve life goals for persons with MCCs. Only 1 participant mentioned living longer. Perhaps more deliberative probing might have revealed how participants valued quality vs quantity of life, which was how the value of managing health was originally framed.^37,38 Alternatively, this tradeoff may have less meaning for people not facing life-threatening situations.⁴⁰

Approaches to identifying patients’ goals have been reported for specific health problems or patient populations.^18-29 A goal taxonomy recently was developed for persons with functional limitations and complex care needs.^26,27 The patient priorities identification process builds on these efforts, particularly goal attainment scaling, by implementing a process that facilitates the separate identification of value-based outcome goals and health care preferences for persons with MCCs.³⁰ This separation supports clinical decision-making by focusing decision-making on the achievement of each person’s outcome goals within the context of the health care the individual is willing and able to receive.

Participants varied in their health care preferences, the aspects of their current health care that they believed were acceptable and helpful, and the aspects that were burdensome, bothersome, or unhelpful. Although instructed to define helpful care in relation to their outcome goals, persons usually mentioned treatments that were helpful for individual conditions, such as hypertension or diabetes.

Not surprisingly, medications were the most frequently cited health care activity. Participants mentioned preventive medications, particularly statins, more often in the context of burden than benefit. Whether they were correct in ascribing bothersome effects to these medications is uncertain, but many participants found these medications to be burdensome.^41,42 This finding is consistent with previous work showing that older adults are reticent to take preventive medications associated with adverse symptoms that they consider to be health outcomes that need to be balanced against future benefit.⁴³ By comparison, medications that address current symptoms, such as pain or sleep, were more likely to be perceived as helpful than bothersome, although clinicians and regulators try to limit use of these medications because of adverse effects.⁴⁴ The differing perceptions of some patients and clinicians on the benefits and harms of preventive medications vs medications that alleviate symptoms needs to be acknowledged. Decision-making guided by patients’ outcome goals may help address these discordant perspectives.

A quarter of participants mentioned that visits or clinicians were helpful; 9.2% reported desiring fewer visits and clinicians. Because participants were not required to comment, results do not imply level of satisfaction with visits or clinicians. Some participants wished that 1 person could oversee their care or expressed frustration when clinicians’ recommendations conflicted. Aligning decisions with patients’ priorities is an effective strategy for coordinating care and avoiding conflicting recommendations.^33,34

Participants typically believed that the procedures they received were helpful. The 15% who raised concerns did so in the context of prospective procedures. More in-depth discussions are necessary to explore individuals’ desires about future procedures. Having gone through the process of identifying their priorities may help guide these discussions, particularly if the tradeoffs are framed within patients’ priorities.

As for other health care activities, individuals varied in their acceptance of self-management tasks, such as monitoring of glucose levels and use of continuous positive airway pressure, diets, assistive devices, and hearing aids. Of note, even among the 37.5% of patients with diabetes who reported that monitoring glucose levels was acceptable, most acknowledged that they did not check their glucose levels as often as recommended.

Participants were drawn from a single practice with a homogeneous patient population; results may not generalize to other populations. Identifying the priorities of diverse groups is essential. It remains to be determined whether clinicians can use patients’ goals to guide decision-making; preliminary evidence suggests they can.^31,32 Future work requiring larger samples from diverse populations includes categorizing goals based on agreed upon characteristics and ascertaining the abilities required to achieve specific goals, and conversely, the conditions, symptoms, and impairments impeding their achievement. Ultimately, methods will be needed for determining which interventions most effectively support achievement of specific goals.

Although further research is needed, this study suggests that asking people about their goals and preferences and getting responses that can inform decision-making is feasible. Combining patients’ health conditions, function, and health trajectory with these goals and preferences should focus care for older adults with MCCs. Because various combinations of conditions and impairments as well as social determinants may affect goal achievement, aligning care with patients’ priorities will require input from many health care professionals as well as community and other services. The variability in goals and preferences supports patients’ priorities as the targets toward which to aim all health and support services.

In related work, strategies for aligning decision-making with patients’ outcome goals and health care preferences have been developed and tested.^33,34 Tips and scripts for addressing challenges, such as nonactionable or nonspecific goals or goals that are not achievable because of health and functional status or because patients are unwilling to receive the health care necessary to achieve their goals, have also been created.³⁴ The eventual objective of this line of investigation is an approach to decision-making and care that helps older adults with MCCs achieve what matters most to them while minimizing harm and treatment burden.

Accepted for Publication: January 20, 2021.

Published: March 24, 2021. doi:10.1001/jamanetworkopen.2021.1271

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2021 Tinetti ME et al. JAMA Network Open.

Corresponding Author: Mary E. Tinetti, MD, Department of Internal Medicine, Yale University School of Medicine, 333 Cedar St, PO Box 208025, New Haven, CT 06520 (mary.tinetti@yale.edu).

Author Contributions: Drs Tinetti and Costello had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Tinetti, Naik, Hernandez-Bigos, Van Liew, Esterson, Dindo.

Acquisition, analysis, or interpretation of data: Tinetti, Costello, Davenport, Hernandez-Bigos, Kiwak, Dindo.

Drafting of the manuscript: Tinetti, Costello, Davenport.

Critical revision of the manuscript for important intellectual content: Tinetti, Costello, Naik, Hernandez-Bigos, Van Liew, Esterson, Kiwak, Dindo.

Obtained funding: Tinetti.

Administrative, technical, or material support: Naik, Hernandez-Bigos, Van Liew, Esterson, Kiwak, Dindo.

Supervision: Dindo.

Conflict of Interest Disclosures: None reported.

Funding/Support: This study was supported by grants from the John A. Hartford Foundation (Dr Tinetti and Costello), the Gordon and Betty Moore Foundation (Dr Tinetti), and the Robert Wood Johnson Foundation (Dr Tinetti) and grant P30AG021342 from the National Institute on Aging, National Institutes of Health (Claude D. Pepper Older Americans Independence Center at Yale University School of Medicine).

Role of the Funder/Sponsor: The sponsors 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.

Additional Contributions: Denise Acampora, MPH, Department of Internal Medicine, Yale School of Medicine, New Haven, Connecticut, provided project management. Lauren Vo, APRN, Hartford HealthCare Medical Group, Hartford, Connecticut, facilitated patient priorities identification. Both were compensated for their contributions. We thank the clinicians of Bristol ProHealth and Bristol Cardiology for participating in this project.