Aligning care with the personal values of patients with complex care needs

Abstract

Objective

To identify opportunities to align care with the personal values of patients from three distinct groups with complex medical, behavioral, and social needs.

Data Sources/Study Setting

Between June and August 2019, we conducted semi‐structured interviews with individuals with complex care needs in two integrated health care delivery systems.

Study Design

Qualitative study using semi‐structured interviews.

Data Collection Methods

We interviewed three groups of patients at Kaiser Permanente Washington and Kaiser Permanente Colorado representing three distinct profiles of complex care needs: Group A (“obesity, opioid prescription, and low‐resourced neighborhood”), Group B (“older, high medical morbidity, emergency department, and hospital use”), and Group C (“older, mental and physical health concerns, and low‐resourced neighborhood”). These profiles were identified based on prior work and prioritized by internal primary care stakeholders. Interview transcripts were analyzed using thematic analysis.

Principal Findings

Twenty‐four patients participated; eight from each complex needs profile. Mean age across groups was 71 (range 48–86) years. We identified five themes common across the three groups that captured patients' views regarding values‐aligned care. These themes focused on the importance of care teams exploring and acknowledging a patient's values, providing access to nonphysician providers who have different perspectives on care delivery, offering values‐aligned mental health care, ensuring connection to community‐based resources that support values and address needs, and providing care that supports the patient plus their family and caregivers.

Conclusions

Our results suggest several opportunities to improve how care is delivered to patients with different complex medical, behavioral, and social needs. Future research is needed to better understand how to incorporate these opportunities into health care.

What is known on this topic

• Matching the optimal management strategy to the individual patient who has a combination of multiple chronic conditions and behavioral and social needs remains an ongoing challenge.

• “Complex needs” is a highly heterogeneous category with poorly defined inclusion criteria and treatment goals.

• Delivering patient‐centered care requires that we better understand the heterogeneity, personal values, and care needs of this population.

What this study adds

• The study captured the voice of the patients with different combinations of medical, behavioral, and social needs.

• The study identified their unmet care needs and what they consider most important for their health and well‐being to improve care for patients with complex needs.

• The study highlights opportunities throughout the whole health care system to support individuals with complex needs.

1. INTRODUCTION

Caring for patients with complex chronic conditions, behavioral, and social needs is a challenge for many health care providers. Delivering patient‐centered care that offers optimal interventions and improves the lives of these patients requires an understanding of many factors including each individuals' unique values and goals for care. ¹ , ² , ³ , ⁴ , ⁵ , ⁶ , ⁷ , ⁸ Patients with complex care needs have high hospital and emergency room utilization, present the greatest clinical management demands, and account for disproportionate expenditures. ⁹ , ¹⁰ The complexities of this population do not readily fit into disease‐specific care management pathways that prioritize efficiency and standardization. ¹ , ¹¹ Interventions to improve outcomes and reduce costs have, to date, had limited demonstrable impact in this patient population. ¹² , ¹³ , ¹⁴ , ¹⁵ , ¹⁶ , ¹⁷ This may be due to ineffective interventions, an inability to detect effective elements of interventions due to heterogeneity of treatment effects, measuring outcomes that do not reflect patients' goals of care, ¹⁸ , ¹⁹ or insufficient understanding of unmet care needs that reflect patient priorities.

Health care providers need to understand what patients with complex needs consider most important for their health and well‐being (i.e., personal values). Understanding the factors that may be contributing to this gap remains a challenge. These patients may be reluctant to share personal values or may fail to see the potential for health care to address these needs. ²⁰ , ²¹ , ²² , ²³ Patients with complex needs also represent a diverse population that may require more than one approach to honor their personal values. ²⁴

We sought to understand the opportunities for patient‐centered care represented in three distinct profiles of complex care needs. We based our approach on a previously tested qualitative method to elicit what each patient identified as most important for health and well‐being. ²⁰ , ²² We identified themes related to improving care for patients with complex needs. These themes are grounded in the perspectives and lived experiences of people with complex care needs and highlight potential opportunities for aligning care with patients' personal values.

2. METHODS

Between June and August 2019, we conducted semi‐structured interviews to elicit patients' values and complex care needs. Patients were receiving care at two integrated health care delivery systems (Kaiser Permanente Washington [KPWA] and Kaiser Permanente Colorado [KPCO]). The medical groups at KPWA and KPCO are separate organizations, but they are each governed by a contract with the same organization, Kaiser Foundation Health Plan. This study was approved by the institutional review boards at KPWA and KPCO.

2.1. Participants

We recruited three groups of patients representing three distinct profiles of complex care needs identified using methods in our prior work and indicated by our clinical stakeholders as high priority for further study. ²⁵ , ²⁶ These three complex patient profiles were defined by the following key characteristics: Group A (“obesity, opioid prescription, and low‐resourced neighborhood”), Group B (“older, high medical morbidity, emergency department, and hospital use”), and Group C (“older, mental and physical health concerns, and low‐resourced neighborhood”) (Appendix A—group profile criteria used to inform the purposive sampling). ²⁵ Table 1 describes the characteristics of each group. Recruiters mailed invitation letters to eligible patients then called 4 days later to follow‐up on participation. We purposefully sampled patients to maximize variation in gender, race/ethnicity, age, income, and education. We recruited patients for Groups A and B at KPWA and Group C at KPCO.

TABLE 1.

A summary of perspectives from three profiles of patients with complex care needs

Patient groups	Inclusion characteristics	Summary of perspectives (by theme)
Group A (“obesity, opioid prescription, low‐resourced neighborhood”)	BMI over 30, an opioid prescription, lived in a low‐income neighborhood (third or fourth quartile of the neighborhood deprivation index [NDI]), had four or fewer PCP visits in prior year, and had low to intermediate overall morbidity (score of 2 or 3 on Resource Utilization Band [RUB] from Johns Hopkins ACG system)	(1) Relating personal values to symptoms and limited function helps contextualize care. (2) Nonphysician providers help establish and support shared pain management goals. (3) Important to tactfully raise emotional aspects of pain and opioid dependence. (4) Community resources can support personal values, for example, transportation. (5) Pain and limited function necessitate more support for other family members.
Group B (“older, high medical morbidity, emergency department, and hospital use”)	Older than 65 years, had a recent emergency room visit or hospital stay, used durable medical equipment, had stage 3–4 kidney disease, low albumin, and high comorbidity	(1) Reassess and adapt to personal values with aging. (2) Providers with more time than physicians (e.g., physical therapists, nurses) can engage with them and attune to their needs. (3) Support is needed for the emotional aspects of aging. (4) Community‐based resources help support values and maintain social connections. (5) Need support for family members while at home and in specialized settings (e.g., skilled nursing facilities).
Group C (“older, mental and physical health concerns, and low‐resourced neighborhood”)	Older than 65 years, had poor self‐rated general and mental health, were socially isolated, and lived in low‐income neighborhoods	(1) Contextualize care via personal values, across changes in providers and with aging. (2) Need consistent emotional support across changes in living situation, health status, and access to therapists. (3) High occurrence of social needs requires better patient understanding of available resources. (4) Address limitations in living situation for patient and spousal caregiver together.

Abbreviations: ACG, adjusted clinical group; BMI, body mass index; PCP, primary care provider.

2.2. Interviews

Two interviewers (including LT, AB, MFG, JR, KG, JB, or TD) consented participants and conducted in‐person, 2‐h interviews in the participant's home or primary care clinic, whichever the participant preferred. First, we elicited the personal values each participant considered most important for health and well‐being from six domains defined from previous research—activities, abilities, emotions, possessions, principles, and relationships; domains with descriptive prompts for reflection were provided to participants before the interview. ²⁰ , ²¹ , ²⁷ During the interview, we used a semi‐structured interview guide that included questions as follows: (1) what “being healthy” and “well‐being” meant to the patient; (2) personal stories about experiences when health care did and did not meet the patient's needs; (3) social and functional challenges based on items from the WHO Disability Assessment (WHODAS 2.0) and Your Current Life Situation (YCLS) questionnaire, which measures basic resource needs; (4) reflections about how these challenges related to the patient's personal values and health care they received; and (5) reflections about how health care could support their values and needs in the future. ²⁰ , ²¹ , ²⁸ , ²⁹ The WHODAS 2.0 assesses general function across cultures and settings and includes six domains (cognition, mobility, self‐care, getting along, life activities, and participation). The semi‐structured format ensured uniformity across interviews while allowing for new topics to emerge as patients shared their stories.

Interviewers also used a notecard mapping exercise informed by prior work. ²⁷ This exercise assisted participants as they reflected on and articulated relationships between personal values and social and functional challenges. First, the interviewer wrote down participants' personal values (e.g., family, gardening, or faith‐based activities) in their own words and social or physical challenges (e.g., unable to drive) on notecards, one concept per card. Then, participants selected cards they deemed significant and described how health care could support their values and needs related to the concept. At the end of the interview, participants completed a short demographics survey. Participants received a monetary incentive for participation.

2.3. Qualitative analysis

Interviews were audio‐recorded and professionally transcribed. To code the interview transcripts, we used a template coding approach that included a priori codes (e.g., personal value domains) to identify themes within and across groups. ²⁰ , ²¹ We also developed new codes (e.g., qualities of care, challenges) to capture emergent ways that patients experienced health care supporting their personal values. Analysts (LT, AB, and MFG) with qualitative expertise independently coded one of the transcripts to create the initial coding list. Then, six analysts (LT, AB, MFG, KG, JB, and TD) coded a second transcript together during a live‐coding session using Atlas.ti, adding new codes and refining existing codes. ³⁰ , ³¹ A small group (LT, AB, and KG) further developed the codebook and completed all transcripts in consultation with each other about interpretation and application of the code list. These steps enhanced the reliability and trustworthiness of the analysis. ³² All of the authors met several times to discuss emerging themes within and across the three patient groups.

3. RESULTS

The overall mean age of the 24 participants was 71 years (range 48–86 years), with the eight Group A's mean age at 62 years (range 48–81 years), the eight Group B's mean age at 80 years (range 74–86 years), and the eight Group C's mean age at 70 years (range 65–84 years). The participants included 10 women (42%). Race/ethnic representation consisted of 22 white (91%), one black (4%), and two Hispanic (8%) participants. Most people were retired (n = 18, 75%) and married/partnered (n = 18, 75%). Income varied across the groups (four missing). In Group A, one participant reported an annual income between $10,000 and $20,000; three reported $20,000–$50,000; one reported $50,000–$100,000; and one reported an annual income of more than $100,000. In Group B, six reported an annual income between $50,000 and $100,000 and one reported an annual income of more than $100,000. In Group C, participants reported the lowest average annual income with three who reported $10,000–$20,000; one reported $20,000–$50,000; and one reported an annual income of more than $100,000.

Participants described many ways that care could better align with their personal values and needs. Below we report five themes that were common across the groups and grounded in the participants' experiences and perspectives. These themes include unmet needs and opportunities for values‐aligned care that is needed to improve care. In Table 1, we summarized each profile group's perspectives on the themes.

3.1. Theme 1—Exploring and acknowledging personal values

Participants expressed that they wanted professionals on their care team, primarily physicians, to better understand the contexts of their health care concerns including their personal values and needs. They preferred their care team to have conversations with them to understand what is important to them and “offer whole wraparound support…for the entire life of a person.” A participant from Group A expressed,

I would like to be able to talk to somebody that listens and looks at you holistically, but knowing that doctors are what doctors are, and they study one little focused area and that's all they know, you have to try to figure out how to fit them all together yourself. (Michelle, 59 years’ old).

Participants commented that when providers gained a deeper understanding of them, it helped to motivate them to use self‐management approaches such as sleep management and daily exercise. A participant in Group A described positively how her provider worked to contextualize her treatment by understanding how her pain was related to her values (e.g., gardening) and function (e.g., limited mobility).

…sometimes when you're having those conversations about pain, they're like okay, what did you do? What have you been doing? Why is it that we're in this? Why does this hurt? So, then you kind of have to tell the story of – well, I weeded the backyard all by myself. And they're like this now explains everything, that kind of stuff. So just talking with those – why are you and what is your situation kind of lead into [what treatment you need]. (Leslie, 48 years’ old).

Participants in all groups reported that when they interacted with new providers or care team members, they had to retell their situation. For example, a participant in Group C, treated for many years for chronic diseases and injuries, expressed frustration and dissatisfaction with a new provider's lack of understanding of the context of her health care needs. She felt the new provider did not understand the history of her health issues or her values.

3.2. Theme 2—Providing access to nonphysician providers who have diverse perspectives on care delivery

Participants in all groups mentioned that nonphysician providers (e.g., including nurses, physician assistants, chiropractors, dietitians, massage therapists, naturopaths, acupuncturists, osteopaths, pastors, and counselors) often have different perspectives on care delivery and were better able to understand and align participants' values with the care provided. Across all three groups, participants suggested it would be better if someone besides a physician could conduct a comprehensive intake, including elicitation of values and the context of health care needs, and then coordinate care across providers. For example, a participant in Group A reported that his pain physician focused on deprescribing opioids rather than establishing and working toward common goals. And, he described that he connected better with his physical therapist and social worker who helped him learn alternative ways to reduce pain through exercise, better sleep, and cognitive behavioral therapy. These pain management strategies helped him get back to enjoying riding his motorcycle and doing woodworking safely.

Participants in Group B appreciated having access to home‐health physical therapists and nurses who seemed to have more time to engage with them than physicians. For example, a participant described how her nurses and physician's assistant spent time understanding her needs:

The RN's, I have much more faith in them than I do the guys with the big long coats. Because they're more attuned to what the patients need and want and require, and they've got the time to spend. It's like the physician's assistants. I find I get far better care out of them than I do out of the MD's because they've got more time…I think the nurse practitioner or the physician's assistant, whatever the title is, they're one of the smart things that they've done in medical treatment. (Rose, 80 years’ old).

3.3. Theme 3: Offering values‐aligned mental health care

Participants, particularly in Groups A and C, described a desire for mental health support that acknowledged their personal values and needs. Participants in Group A wanted providers to broach the topic of mental health tactfully. These participants reported that they felt emotionally affected by multiple health and social challenges, including pain symptoms, dependence on opioids, and not being able to continue the activities and relationships they value. Participants in Group A described providers not fully acknowledging their emotional experiences with pain by prescribing medications that deal with immediate, acute problems without addressing the underlying causes of the pain or its emotional toll. They mentioned feeling frustrated when health care team members did not address the source of their pain nor how their pain impacted what was important in their daily lives, such as volunteering in the community, fishing, or doing other hobbies. A participant from Group A mentioned as follows:

I enjoy volunteering. One of my core values is helping others…But I haven't been able to do that in a few years here. My doctor cut me way back on meds so that really curtailed what I was able to do. (Joe, 63 years’ old).

Participants in Group C lived in low‐resourced neighborhoods and had multiple health problems that impacted their mental health and made it difficult for them to find helpful mental health resources. To overcome this barrier, a participant with poor health and limited mobility recognized during her interview that her counselor supported her valued emotions (“feeling joy”) and relationships (“husband and daughter”). As she tentatively describes below, she depends on her counselor as a “lifeline” to important relationships and emotional stability.

I guess I've always been one of those people who—not real sure about myself. You know, I don't want to say my “ego” but my self‐esteem. So, I'm easily offended…And sometimes when I get these real low‐esteem, my mental, I go off whack, you know. I just do. And I know I do. And I have these like ups and downs all the time. And so I work at that. And the psychologist over here…She's very helpful…She's my lifeline. She keeps me in line with my daughter…and with, you know, my husband. (Maddie, 75 years’ old).

Group C participants also talked about mental health resources that were intermittent in how well they met their needs or understood their values or the context of their mental health care needs. Sometimes, a loss of value‐aligned care occurred over time due to therapists moving away or changing due to insurance requirements. Some of the patients had low expectations or did not realize they could expect care that better supported their values.

Well, he's the doctor that I don't think we're on the same planet. I would like to get a new psychologist. Since I'm on Medicare I have [to] see a psychologist, it can't be just a counselor. I would really like to talk to the last counselor I had. He was really good. He moved on to [another town] and I don't want to drive that far and besides, now Medicare wouldn't pay for my visits…I have gone through lots of counselors. I mean like eight or so. (Susan, 65 years’ old).

3.4. Theme 4—Ensuring community‐based resources support personal values

Participants in all three groups described a need for better connection of community resources (e.g., housekeeping) with their personal values (e.g., volunteering, attending church) and other unmet social needs (e.g., home safety). For example, an 81‐year‐old participant in Group A described that doing her daily activities was difficult.

Taking care of my husband, whatever he needs. Getting to the aquarium on Saturdays. We volunteer there and that is fun. Getting to church on Sundays. All of this has become problematic since the car went dead. The only income we have is Social Security, so we have to make do. (Beth, 81 years’ old).

When asked how her situation might be improved by health care providers, she commented that she did not know that they could help with these types of challenges by connecting her with transportation to support her values (e.g., attending church, volunteering), help with finances, and support for daily activities (e.g., caring for her husband) but expressed that she would be “open to what is possible.”

Participants in Group B described losing their physical ability and the social connections needed to do valuable community‐based activities as they aged. Although some participants had found new meaningful social activities, others had not. For example, a male patient who had incontinence had stopped playing tennis, and later his community's tennis center shut down. After his incontinence resolved, he suggested in retrospect that during that time he could have benefited from finding other community‐based social and physical activities in his community.

Participants in Group C commonly identified difficulty going places, doing tasks of daily living, having financial challenges, and being emotionally affected by health problems. Some of them received help in these areas from community resources and through referrals from coordinators in their health clinic, but others were not aware of these resources. Participants also described how connections to the community can address the intersection between social and mental health needs. For example, a participant in Group C described successes and setbacks over the last 10 years with her mix of pain, immobility, and mental health challenges. She had tried group and individual therapy, neither of which she found helpful. Her new therapist in her primary care clinic, though, listened to her and connected her to a community wellness center that brought her new relationships, participation in social activities such as an art group, and fulfillment through helping others. Even though not all the therapist's recommendations for community connections came to fruition, she felt “in a better mood” and grateful for the support.

3.5. Theme 5: Providing care that supports the patient plus their family and caregivers

Individuals in all three groups, but especially in Group B, spoke about relationships with their spouses, significant others, and children as personal values that were integral to their health and well‐being. Patients' health can affect the health and well‐being of their family members and vice versa. Participants mentioned that providers in many roles, including doctors, massage therapists, nurses, and physical therapists, should consider how to support their family members. Family members needed support in caring for patients (e.g., teaching from home health nurses) as well as support for themselves (e.g., breaks from caregiving duties).

Participants in Group B suggested that the health care system could support their family by advising them and coordinating care while the patient was in a skilled nursing facility (SNF) and by providing home health services for longer than is currently allowed by their insurance coverage. One participant suggested that his family could have benefited from guidance about what to expect during his stay at a SNF, including their financial responsibilities and how best to transition back to home. He wished his family had a list of questions to consider asking while he was admitted to the SNF. Alternatively, another participant from Group B found it useful to have the same family physician as her adult son with special care needs. This helped the physician understand her situation so the physician could align her values (e.g., hiking, supporting family) with her medical and social needs.

Because I think it helps my doctor understand me if she knows about my son and his needs, because our lives are integral – I take care of him, so she can feel how our needs interrelate. For me especially that works so well to have my son have the same doctor as I have. (Carrie, 74 years’ old).

Other examples from participants in Groups A and C revealed how health care could better acknowledge the interrelation between patients' and caregivers' living experiences and shared values. As an example of care supporting a patient's and family's healthy eating, one participant suggested that if she could see a dietitian together with her husband, this would help them work together to adjust their grocery shopping and dietary practices at home.

…if [my husband] could sit in on it, maybe he would understand…We try to buy things in bulk at Costco so if most of the things we buy in bulk would be things that I could eat. (Beth, 81 years’ old).

4. DISCUSSION

Our findings more broadly describe the role that personal values and needs play in the delivery of health care for complex care patients. ³³ , ³⁴ Grounded in the perspectives and lived experiences of patients with complex health, behavioral, and social needs, we shared five ways that health care providers can offer values‐aligned care by identifying outcomes and goals that reflect what is most important to patients. These themes, common across all three groups of patients studied, focused on the importance of care teams exploring and acknowledging values, providing access to nonphysician providers who have different perspectives on care delivery, offering values‐aligned mental health care, ensuring community‐based resources support values, and providing care that supports the patient plus their family and caregivers.

Our findings demonstrate the utmost importance of individualizing care for people with complex needs and how eliciting specific information (i.e., personal values, social determinants of health, and functional challenges) can reveal how care should be individualized for a given patient. The themes describe foundational approaches to values‐based care and meet the needs of different complex populations segments. Edwards et al.'s ¹⁵ systematic review on interventions that target complex care patients found that intensive, interdisciplinary primary care may increase hospitalizations due to the unintended consequences of increasing care discontinuity and burden of care coordination. Our findings are consistent with their recommendation to design care that identifies complex care patients' needs to ensure care is aligned instead of a burden. In addition, our work illustrates opportunities for tailoring care to individuals with complex needs yet considering commonalities within each group (e.g., sensitivity of Group A participants to how mental health care is offered vs. information support needed by Group C to understand the mental health options available). This finding supports the National Academy of Medicine report on effective care for high‐need patients that the heterogeneity of complex care patients suggests that care may need to be specific to each complex care patient group. ⁹

Our findings extend the Patient Priorities Care program, an approach to identifying priorities in older patients with multiple chronic condition and deliver values‐aligned care. ³⁵ , ³⁶ , ³⁷ Our study expands on this program as our clinical stakeholders identified a broader group of patients with complex medical, social, and behavioral needs that could benefit from better care. Our findings focus on care opportunities that align personal values with multifaceted needs, not only multiple chronic conditions. Our findings also support that eliciting personal values alongside patients' social risks (e.g., limited finances, transportation) is essential for developing a practical and patient‐centered care plan.

Health care is largely designed to be efficient and to focus on single diseases. Clinic visits are often scheduled to be 20 min long. ³⁸ This routinely fails to provide the conditions needed to achieve values‐aligned care planning. Clinical staff and providers are also not trained in values elicitation and integrating values into care planning. ²¹ , ²² Furthermore, patients are socialized to limit their discussions of their illness experiences to biological processes in visits with providers. ³⁹ , ⁴⁰ , ⁴¹ , ⁴² , ⁴³ Our findings suggest that further work is needed to identify new approaches, new roles, and education for health care teams to routinely elicit and align complex care patients' personal values with care. Our findings also support a population‐health approach that tailors care based on the characteristics of individuals, as it is likely that each patient will require individualized care based on their personal values and challenges (e.g., social isolation, limited financial resources). In addition, we need to help patients voice how health care might be delivered to meet their personal values and needs. This can be challenging, however, because patients might not always want support for unmet social needs or may not be aware of how health care can support their needs or personal values. ²³ , ²⁷

4.1. Limitations

Our sample was relatively small, and despite purposive sampling, participants had limited socioeconomic and demographic diversity. Therefore, the results might not be reflective of the experiences and perspectives of patients from other backgrounds and settings. We likely only captured a sample of patients' perceived opportunities for health care to align with their personal values and needs. Validating these findings with larger samples with similar characteristics and other groups with complex care needs could guide patient‐centered care interventions. While the two integrated delivery systems where we conducted interviews are separate organizations, they are both subject to the oversight of a single health plan and therefore the findings from this study may not be generalizable to other health care settings.

5. CONCLUSIONS

Through a qualitative approach, we identified five themes related to the personal values held by three different groups of people with complex needs that can be applied to organizing and delivering health care. Since the values and needs were generally heterogeneous, these results suggest that values‐aligned care can be accomplished through a combination of existing standard care approaches and tailored approaches to specific needs of each person. Understanding what is most important to a person's health and well‐being provides the foundation for identifying meaningful outcomes in care and opportunities to align care with personal values. Further clinical and policy work is needed to adapt care to provide adequate conditions, appropriate care team roles, and education on values elicitation and to identify how best to implement these learnings into clinical practice to more effectively address unmet needs and achieve patient‐defined meaningful outcomes for patients with complex medical, behavioral, and social needs.

Supporting information

Appendix S1 Supporting information

Tuzzio L, Berry AL, Gleason K, et al. Aligning care with the personal values of patients with complex care needs. Health Serv Res. 2021;56(S1):1037‐1044. doi: 10.1111/1475-6773.13862