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Competencies for engaging high-needs patients in primary care
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Competencies for engaging high-needs patients in primary care Michael J. Yedidia Center for State Health Policy, Rutgers University, 112 Paterson Street, 5th Floor, New Brunswick, NJ 08901, United States
A B S T R A C T Background: Patients who heavily utilize hospitals and emergency departments frequently have complex needs requiring services spanning medical, behavioral, and social service sectors. This study identifies essential competencies for caring for high-needs patients and highlights their importance to primary care delivery. Methods: Transcripts of in-depth interviews with 30 clinical and administrative staff at 23 complex care programs across the United States were analyzed using standard qualitative techniques. Selected programs had several years of experience in serving patients with multiple chronic conditions, serious mental illness, substance use disorders, severe poverty, and homelessness. These programs exemplified diverse models (assertive community treatment, housing first, behavioral health, high utilizer), and all of them shared the common element of integrating primary care into their services. Results: Competencies, including those known and taught in other fields, have distinctive application to informing delivery of high quality primary care to populations with complex needs, including: motivational interviewing for establishing patients’ priorities and helping them improve their health on their own terms; trauma-informed care for modifying primary care procedures to mitigate the ill-effects of prior trauma prevalent in this population; and harm reduction for altering medical regimens to accommodate constraints on what patients are able or willing to do. Other capabilities, cultivated by these programs, include empathizing with patients, promoted by exposure to simulations of patient experiences (e.g., hearing voices); as well as withholding judgment and counteracting patient passivity to foster open discussion of treatment plans. Conclusions: Absence of deliberate attention to equipping providers with specific competencies for caring for high-needs patients may contribute to lack of patient engagement and sub-optimal outcomes, ultimately undermining the success of programs serving these populations.
1. Introduction Patients who heavily utilize hospitals and emergency departments for routine care often have complex health challenges including multiple chronic conditions, mental illness and substance use disorder, and frequently suffer from severe deprivation including homelessness, hunger, and other sequelae of poverty.1,2 These patterns of utilization generate high costs; it is well established that the most costly 5% of all patients account for nearly 50% of health expenditures,3 and highneeds populations are often represented in this high-cost cohort.4 Given the socio-demographic background of this population, the burden of these costs is often borne by state Medicaid programs, by charity care programs, and by hospitals, clinics and other providers.5 Policymakers have responded by exploring financing mechanisms intended to enable primary care providers to devote time and resources to serve the broad spectrum of needs of these populations, with the aim of reducing costs and increasing quality of care. For example, the Centers for Medicare and Medicaid Services (CMS) have created flexible
payment methodologies to support Medicaid health homes6 which are designed to broaden the scope of needs addressed for people with chronic conditions; several states have initiated demonstrations of Medicaid Accountable Care Organizations offering shared savings arrangements as incentives to reduce costs and improve quality7; CMS has supported payment redesign to give primary care practices resources for investing in care coordination strategies for increasing quality and reducing delivery of unnecessary services8; and the National Committee for Quality Assurance (NCQA) has set up an accreditation process to recognize superior performance of patient-centered medical homes with regard to quality, costs, and patient experiences.9 All of these initiatives seek to address the needs of patients with complex needs. Accounts of the experiences of high-utilizing patients suggest that they often seek treatment when they are in crisis, may not follow through with referrals, frequently have difficulties adhering to treatment regimens, and lack sustained relationships with primary care providers.1,2,10 These common attributes co-exist in a patient's experience at one of the research sites studied here, quoted from a provider
E-mail address: [email protected]. http://dx.doi.org/10.1016/j.hjdsi.2017.06.005 Received 10 January 2017; Received in revised form 21 June 2017; Accepted 25 June 2017 2213-0764/ © 2017 Elsevier Inc. All rights reserved.
Please cite this article as: Yedidia, M.J., Healthcare (2017), https://doi.org/10.1016/j.hjdsi.2017.06.005
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This study was designed to identify necessary competencies for effectively engaging patients with complex needs in primary care. The research strategy was premised on the assumption that expertise developed and applied in varied fields has relevance for providing high quality primary care for these populations. Programs were selected for study that exemplified a wide range of care models to assure varied perspectives and disciplinary backgrounds of providers. All programs shared the common element of primary care integration.
interview in the textbox below. The significance of these challenges underscores the importance of preparing providers with appropriate expertise to more successfully engage these patients in care and effectively address their needs. Account of the Experiences of a Patient Cared for at a High Utilizer Program Quoted from a Provider Interview from this Study Max (a pseudonym) was a heroin addict, and had COPD and was homeless. He was 58, and every time he came in to the hospital or ED, he’d get put in the ICU because his oxygen levels were so low. As he’d get better, he would start demanding things. He loved chocolate Ensure on ice. But he wasn’t [asking for] it in a very nice way. And then, as soon as he could get up and walk, he’d — walk out, not having follow up care, not picking up his discharge medications and not caring what was going on with his health because he was going to look for his next fix. So I helped Max to get housed first. That was the first thing he wanted to work on. I also, upon discharge, helped him pick up his medications. It took another couple times to figure out where he was going to keep them, so that he didn’t keep losing them and how he was actually going to take them. Because some of them required things like—they wanted him to take Lasix and he was like, “I’m not going to take that. Because I don’t have a bathroom close enough to me all the time, so I’m just not going to take it.” And [I had to] help the providers understand that that wasn’t an option and they’d have to come up with a plan B. And so we went to primary care appointments with each other. We went to housing meetings. We got all the things together that he needed for housing, like ID, and all that sort of thing. He expressed at one point that his fondest wish was to be back in contact with his family. And that they would not speak to him while he was still using. So over time, he decided that it would be worth his while to get on Methadone. So as he got housed, he also went to his intake for his Methadone and started with that. And the doctors had told him over and over again that he wasn’t going to live another two years because of how often he was here and how low his O2 stats were. And he made it five years. And his family was here when he passed. But he was housed and he was happy, and he was back in contact with his family before he passed away. So, I think that’s terribly successful.
2. Methods A qualitative methodological approach was dictated by the purpose of the study – to learn about competencies essential to the roles of providers in programs with extensive experience in serving high-needs patients. Data were collected through extended, open-ended interviews with clinical and administrative staff of 23 systematically selected programs. The sampling strategy reflected the dual emphasis on identifying relevant expertise from diverse disciplines and understanding its application in delivery of primary care. A broad net was cast in identifying types of programs for study. Sampling criteria and associated rationale are detailed in Table 1. The 23 programs selected for study are identified in Table 2. They are roughly characterized as originating in a behavioral health environment integrating primary care (7 programs); building on a housing program and integrating primary care and behavioral health (4 programs); and originating in a primary care program and integrating behavioral health and other services (12 programs). Thirty interviews were conducted, averaging 65 min in duration; respondents were encouraged to be as expansive as necessary to address the questions. Questions were sequenced to suit the inductive analytic approach, asking respondents initially to identify care functions critical to delivering services to this population, followed by questions on what they needed to know to perform them. The aim was to elucidate key competencies grounded in the care functions that compel their application. Topics focused on major care tasks and the expertise required for performing them, stories of successful and not-so-successful encounters with patients and factors that determined or impeded success, preparation and training of staff, and background information on characteristics of the patients they served and the composition of their care team(s). Additional items focused on support for staff and avoidance of burnout, topics that are not the focus of this study. A copy of the interview questionnaire is included in the Appendix. The study was approved by the Institutional Review Board at Rutgers University. All of the interviews were audio-recorded and fully transcribed. Analysis of the transcripts relied upon standard qualitative
Table 1 Sampling strategy for selecting programs for study. Inclusion criteria
Rationale
The program was equipped to care for people with multiple chronic illnesses, serious mental illness, substance use disorder, severe poverty, homelessness or housing insecurity; and legal, language, and/or cultural barriers.
Needs associated with these conditions are frequently those experienced by complex patients.
The program embraced a broad spectrum of models including assertive community treatment, housing first, behavioral health, and high user programs.
These models rely upon diverse disciplines and associated expertise, which is suited to detecting a broad scope of competencies relevant to caring for these patients.
The program integrated delivery of primary care services as central to its purpose.
The study is designed to make explicit the relevance of competencies to engaging patients in primary care.
The program offered documentation of extensive experience in serving the scope of needs outlined above.
The practices of successful programs have promise in yielding lessons worthy of broader application.
The program had sufficient longevity (at least 5 years) to suggest a stable model and had survived any initial challenges with respect to staffing and training.
Perspectives and patient-care strategies are grounded in sustained and varied experience.
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Table 2 Characterization of the research sites. Program Behavioral health Austin Travis County Integrated Care (ATCIC);Austin, Texas Community Health and Counseling Services (CHCS), Maine Harborview High Utilizer Program, University of Washington; Seattle, WA Institute for Community Living (ICL), New York, NY Operation Safety Net, Mercy Community Health, Pittsburgh, PA AIMS Center, University of Washington, Seattle Vermont Blueprint for Health Vermont Housing first Bonita House; Oakland, CA Colorado Coalition for the Homeless; Denver, CO Pathways to Housing, Philadelphia, PA Project Renewal; New York, NY Primary care Camden Coalition of Healthcare Providers; Camden, NJ CareOne, New Mexico; Albuquerque, NM CareOregon Health Resilience Program;Portland, OR Cherokee Health Systems; Tennessee Clinica Esperanza, San Francisco, CA Community Care of North Carolina;North Carolina Core Center, Chicago;Chicago, IL Coordinated Care Center, Hennepin County Medical Center; Minneapolis, MN Community Paramedics Program, North Memorial Health Care, Robbinsdale MN Central Oregon Health Council Health Integration Project Community Outreach & Patient Empowerment Program, Partners in Health, Navajo Nation, Window Rock, AZ Transitions Clinic, UC San Francisco School of Medicine; San Francisco, CA
Description
Website
Primary care integrated into behavioral health settings Behavioral health home, primary care integrated; rural settings Behavioral health and social services collaborating with primary care providers serving ED patients Primary care integrated into behavioral health Primary care integrated into behavioral health
http://www.integralcare.org/ http://www.chcs-me.org/ http://www.kingcounty.gov/~/media/health/MHSA/ MIDD_ActionPlan/PES_Liaison_High_Utlizer.ashx http://www.iclinc.net/ https://www.pittsburghmercy.org/operation-safety-net/
Primary care integrated into behavioral health Integration of substance use (opioid treatment) and primary care
https://aims.uw.edu/ http://blueprintforhealth.vermont.gov/
Housing First; ACT team; behavioral health; primary care Housing, integrated primary care and behavioral health Housing First; ACT team; behavioral health; primary care Housing First; behavioral health; primary care
http://www.bonitahouse.org/
High-utilizing patients; care coordination across services High-utilizing patients Behavioral health integrated into primary care sites Behavioral health integrated into primary care Integrated care for HIV+ Patients Behavioral and social services integrated into primary care Behavioral health, social services and primary care integrated into HIV/AIDS services Care for high utilizing patients
https://www.camdenhealth.org/
Behavioral health and social services integrated into primary care Coordinated behavioral, social service, and primary care among patients with high ED use Integrated services relying heavily on community health workers Integrated services for former prisoners
techniques.11 Glaser and Strauss’ approach to analysis12 was used to identify major concepts: two researchers independently coded each interview, noting recurrent themes and linking them to lines in the transcript, entering verbatim text into electronic files for each coded theme, subdividing categories of text to refine concepts, and examining how the themes relate to the overall aim of the study – identification of essential competencies for performing tasks central to effective care of this population. Passages and codes were shared among the researchers and discrepant interpretations were discussed and resolved. Verbatim quotes reported here are associated with the program types (see Table 2 for categorization of research sites). Those interviews coded toward the end of the analysis did not reveal new competencies, indicating that the codes were exhaustive (achieving theoretical saturation in the terminology of qualitative methods12,13). Where appropriate, frequencies with which respondents referenced particular competencies are reported. However, consistent with the inductive strategy, questions did not ask respondents to comment on a specified set of competencies. Consequently, frequencies are not reliable estimates of the extent to which particular competencies and their mode of application are endorsed by all respondents; they are conservative indicators of the prevalence of particular points of view. The report of findings was shared with the research sites; feedback confirmed the salience of the findings to practice (member-checking13).
http://www.coloradocoalition.org/ https://pathwaystohousingpa.org/ http://www.projectrenewal.org/
http://emed.unm.edu/ http://www.careoregonspirit.org/SPIRIT_weekly/ Resilience.html http://www.cherokeehealth.com/ http://www.mnhc.org/medical_services/clinica-esperanza/ https://www.communitycarenc.org/ http://www.cookcountyhhs.org/locations/ruth-mrothstein-core-center/ https://www.hcmc.org/clinics/HCMC_P_048828 https://www.northmemorial.com/communityparamedic http://cohealthcouncil.org/ http://www.pih.org/country/navajo-nation http://transitionsclinic.org/transitions-clinic-network/
3. Results 3.1. Patient engagement Engaging patients with complex needs in services is often challenging given the extreme circumstances under which they come into contact with providers. Providers were asked to recount stories of successful and unsuccessful encounters with patients. Prominently mentioned in these stories were challenges associated with the urgency and magnitude of patients’ needs, the gulf between their life experiences and those of providers who seek to help them, and lack of sustained connections with services. Other stories focused on the effects of previous traumatic experiences which may have contributed to alienation from service providers, and lack of alignment between the benefits promised by available services and patient's priorities and topmost concerns. To establish rapport under these circumstances, providers consistently cited the importance of “meeting patients where they are”, applying systematic strategies for eliciting patients’ perspectives on their needs and responding to their concerns. The competencies they relied upon and their relevance to primary care delivery are reported below.
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Or – “When you forget—what medicines do you seem to forget?” Or, “Did you take it today?” And just make it not judgmental. Because patients who are disenfranchised, you know, they feel very judged and you want to create an atmosphere of partnership and engagement. And say, “Hey, if you’re not doing something, it's our responsibility as well as yours.” Since we probably set the goal — incorrectly. (Primary Care Program)
3.1.1. Motivational interviewing Motivational interviewing was cited by respondents in 18 of the programs as a key competence. Their discussions of its application in serving high-needs patients differed markedly from its typical use as a means of evaluating patient's readiness for behavior change and for pursuing related goals.14 Rather, the scope is expanded and the agenda is more open-ended; the aim is to establish what patients want and care about, and draw on that knowledge to help them improve their health and stability on their own terms. Max, for example (see textbox), volunteered that one of his greatest hopes was to resume regular contact with his family but that none of his family members would talk to him while he was still using heroin. With the goal of reuniting with his family, he decided it would be worthwhile to get into a Methadone program, which the staff successfully facilitated. Critical to this process, providers in almost all of the programs spoke of placing great importance on letting patients tell their stories – at their own pace, without interruptions. While intuitively important, such listening is rare and difficult to incorporate in a busy primary care practice. Respondents at five programs, while valuing this practice, volunteered that the need to accommodate the required investment of time in the visit schedule was a constraint and source of stress for clinicians.
3.1.3. Promoting empathy Several respondents acknowledged the importance of promoting provider empathy with the circumstances of their patients and appreciation of how difficult it may be for them to be seeking help. If they get someone in their office who is a voice hearer, or has other kinds of symptoms of schizophrenia, [we encourage our providers] to not be patronizing, and to not dismiss what the possibilities are, — but to understand what someone is grappling with, just to get to the office, to make it on time, to not be pissed off if someone is late or misses an appointment, to understand that to try to fill out that paperwork with that yammering in someone's head, is a huge, huge thing. (Housing First Program) Programs attempt to promote empathy in these circumstances through role-modelling and supervision. At one program, a more structured and explicit strategy is pursued: Providers are given firsthand experience of what it's like to experience severe impediments, such as those faced by people with schizophrenia. The training adopts the Hearing Voices Curriculum,16 which simulates the experience of hearing voices while participants undertake a series of activities, including social interaction in the community, a psychiatric interview, cognitive testing, and an activities group in a mock day treatment program. The simulation experience is followed by debriefing and discussion. While the experience is temporary, participants report that it can have a profound and lasting impact on their capacity for understanding the difficulties their patients confront and their motivation to be effective in communicating under these circumstances.17
3.1.2. Withholding judgment Patients who do not follow through on treatment recommendations often do not discuss their concerns when they are given advice and do not acknowledge them in later interactions with their providers. Anticipating this response, and believing that it is the norm for many of their patients, leaders of several programs encourage providers to be proactive, making it easier for patients to share their apprehensions; according to a clinician at one of these sites: It has to be OK for a patient to say, “I don’t want to do that.” Or, “I didn’t do it.” And I think that very often you get this kind of culture where people will say, “Yes,” and at that moment they just want to please the provider. But that really at the end doesn’t serve anybody. (Primary Care Program)
3.1.4. Trauma-informed care Experience of trauma is prevalent among populations who have encountered extreme poverty, homelessness, and/or violence.18 Programs that aim to serve such clients generally acknowledge the potential effects that such trauma may have on patients’ responses to care and increasingly familiarize their staffs with strategies embodied in trauma-informed care. All of the programs studied here served these populations, and 17 of them cited trauma-informed care as relevant to their practice.
Focusing explicit attention on counteracting patient passivity, according to supervisors at three sites, is a necessary response to patients who feel powerless and may naturally suppress their concerns and align themselves with their perceptions of provider expectations. The concern is that in the absence of a genuine interaction wherein patient preferences can be voiced and providers have the opportunity to address them, patients are not likely to follow through with their providers’ advice. Providers express frustration when their well-intended efforts and advice are unheeded. Complex, high-needs patients challenge their ability to succeed, generating tension and frustration that hinder effective relationships.
[Training on trauma-informed care focuses] on an understanding of the correlation between childhood adverse experiences or trauma and someone's future of psychosocial struggles and chronic diseases. So that's a key platform to start from for medical audiences—the ACEs [Adverse Childhood Experiences] study19 talking about the effects on the brain and the neural biology that people's brains rewire themselves when they’re exposed to trauma. And to then appreciate that people aren’t being willful or stubborn or noncompliant. That their behaviors are driven from a neurobiological reason oftentimes. (Primary Care Program)
Many people get mad at [clients who are addicted] and blame them [saying] things like, ‘They’re just here for three hots and a cot’ when they’re just continually being brought in by an ambulance. (Primary Care Program) Training and supervision in these settings seek to normalize “noncompliance” as a legitimate response. This practice follows from recognition, articulated decades ago and guiding subsequent research,15 that regularly taking medicine or adhering to other regimens is not a natural experience for many people, and unquestioned acquiescence is not necessarily a rationale response to providers’ initial treatment recommendations. Providers are coached to frame their questions and comments in neutral, non-judgmental terms and are given feedback on the tone and substance of their interaction with patients. A trainer at one of the sites advises:
A subset of programs initiated staff training programs acknowledging that provider behaviors and procedures that are commonplace in primary care delivery and are undertaken with little forethought or reflection in most contexts may pose severe distress to those patients who have been exposed to past trauma. You don’t think a referral is going to re-traumatize someone, but if they have the wrong paperwork and they ended up at the specialist's office, and they get turned away, you know, like that's re-traumatizing. So, even the littlest thing can be really, really rough on the person. (Housing First Program)
You say—“When are the times you don’t take your medicine?” 4
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These aspects of care may remind these patients of circumstances associated with the traumatic event and may cause them to relive it and view the health care setting as a source of distress. Onsite training programs were designed to promote a constant awareness of the potential for activation of this dynamic and focused on recognizing behavioral cues in the course of interacting with patients and making realtime adjustments in their approaches.
unrealistic. In such cases, as reported by respondents at 12 programs, a harm reduction strategy was often pursued; patients were engaged in taking incremental steps to reduce damage from drug use.22 Applying a harm reduction perspective more broadly to primary care, beyond treatment of addiction, second-best options may be pursued when the alternative is to allow medical conditions to go untreated. As evidenced in the sites studied here, social realities (e.g., no access to refrigeration for medicines, competing priorities for limited resources), which are prevalent among high-needs patients, often preclude implementation of favored treatment regimens. Max's response to a routine prescription for Lasix, for example, was:
Appreciating that when someone is very emotional that you need to remain calm, that behavior is telling you they’re frightened or scared. And that when they come into clinics being told what to do does not help someone calm down. So we aim at helping people calm themselves. (Primary Care Program)
I’m not going to take that. Because I don’t have a bathroom close enough to me all the time, so I’m just not going to take it.
In addition to such relatively spontaneous assessment and response, effective care may require systematic adjustments in the pace of service delivery, identifying sources of fear and proceeding incrementally over time to assist patients in coping with them.
Thoughtful consideration of a harm reduction approach in this context was deemed appropriate in many settings (comments from three are quoted in this section).
We spend a lot of time going to doctor's appointments where the person never actually sees the doctor. You know, we go back, and we go back until they’re ready to get there. (Housing First Program)
If I feel like someone needs a medication for hypertension or diabetes, and they [refused to] get any bloodwork at all, I might start a medication with the least side effects, even though I would want to have bloodwork before I did that. If I can’t get it, I start something and then work towards getting the bloodwork. —- If they have diabetes, for a lot of folks, I’m just going for not having hyperglycemia or hypoglycemia; we’re not trying to fine-tune the glucose levels, at least initially. We do very simple insulin regimens with a lot of folks in the beginning, just getting them used to that. And, you know, [some colleagues] would say just using one long-acting insulin, is that really the way to treat someone? But it actually works fine for us. (Housing First Program)
Implementing this approach in ongoing practice requires appropriate staffing. A key function of community health workers in five of the programs was to provide peer support to patients, accompany them to visits, and assist them with paperwork and other tasks in securing services. Once the relevance of trauma-informed care is recognized, there are excellent resources for applying it in practice.20 These materials focus on dimensions of good patient care (e.g., engage and develop trust over time; give relaxed, unhurried attention; talk about concerns and procedures before doing them; validate concerns as understandable and normal, and accommodate these concerns when possible). These principles are not unknown to primary care providers, but the high priority accorded them in several of the practices underscored a concern that insufficient attention to them can be particularly costly in caring for high-needs patients.
Discussions of the need to make adjustments in response to social constraints were balanced with concerns about practicing evidencebased medicine. Compromises in the short run were viewed as a prelude to eventually persuading the patient to get a more complete work-up – i.e., having the bloodwork to monitor blood pressure medication or fine-tuning diabetes control. Deliberate pacing of the care-plan may be critical to engaging the patient in treatment.
3.2. Patient-centered agenda
I try and offer what I would want to do. And then backtrack from there to see what the person is actually willing to do…. [We have a compulsion] “Oh, this person hasn’t seen a doctor in ten years, I’ve got to do everything for them”—I make a plan and do that over several visits, over time. (Housing First Program)
High-needs patients by definition are contending with a broad spectrum of issues that command attention. It follows that patientcentered care plans,21 responsive to individual patient preferences and values, are particularly important for this population. At the same time, respondents noted that eliciting patient priorities and accommodating them in a care plan pose distinctive challenges in view of the barriers to effective engagement reported earlier. They reported on specific strategies and associated competencies to address them.
Doing all one can as a provider extends to honoring the boundaries regarding what patients are willing to do. (Behavioral Health Program) Inherent in adopting a harm reduction approach is the need to revise expectations regarding success, setting realistic goals for the benefit of the patient as well as providers. For staff of the high utilizer program caring for Max, in addition to his having lived three years beyond what his doctors initially told him, they viewed his experience as successful based on the fact that over that period he was back in contact with his family, who were with him when he died, and he had gotten stable housing. An administrator at a housing first program echoed this outlook:
3.2.1. Setting the agenda Patient preferences may become apparent during the course of a routine visit, fostered by providers’ use of motivational interviewing and patients’ recounting of their stories. In some settings deliberate processes are employed to make these priorities explicit. At one program, toward the end of an initial encounter, based on the history and associated discussion, providers list needs which they are prepared to address on cards, and patients are asked to sort them in order of the importance of getting help. What happens, however, when patient preferences conflict with provider conceptions of best practices? This prospect, inevitable as it may be, is not often addressed in discussions of the importance of delivering patient-centered care.
We measure success differently than a lot of people do. We look at success as, you know, someone has retained their housing. They are happy in terms of what they define as happiness — they’re eating, they’re getting some healthcare, they’re bathing occasionally. Their house is habitable. (Housing First Program) For providers seeking to implement evidence-based interventions, existing metrics focused on stability of medical conditions are inadequate for assessing the efficacy of their work with high-needs populations and devoting attention to them may divert energies from more meaningful activity.
3.2.2. Harm reduction Attention to approaches to handling such conflicts was most prominent in this study among the subset of programs that are based in housing first and behavioral health settings. For many of their patients treated for substance use, abstinence as a goal was viewed as 5
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Acknowledgements
We’ve been around a long time now—enough time that people are able to retrospectively look back and see the incredible strides that so many of our folks have made, folks that initially would not have even gotten into services, might have been written off, would have thought there's no chance for this person, there's no hope. (Housing First Program)
Mary Nell Quest, Ph.D. assisted in interviewing and contributed to the analysis. Jennifer Farnham, M.S. also assisted with interviews. The program sites were generous with their time and thoughtful in their responses. The research was funded by a grant from the Robert Wood Johnson Foundation (#71458).
Discussing the relationship between maintaining realistic expectations and upholding staff morale, a clinician characterized a dominant mood at death rounds (meetings to review the care of patients who have died) with an oft-voiced observation:
Appendix A. Supporting information Supplementary data associated with this article can be found in the online version at http://dx.doi.org/10.1016/j.hjdsi.2017.06.005.
What's been so significant for people is knowing that the individuals who have passed would not have lived anywhere near as long if we were not involved with them and if we did not have integrated healthcare with them. (Housing First Program)
References 1 Hunt KA, Weber EJ, Shostack JA, Colby DC, Callaham ML. Characteristics of frequent users of emergency departments. Ann Emerg Med. 2006;48:1–8. 2 Raven MC, Billings JC, Goldfrank LR, Manheimer ED, Gourevich MN. Medicaid patients at high risk for frequent hospital admission: real-time identification and remedial risks. J Urban Health. 2009;86:230–241. 3 Cohen. SB, Yu W The concentration and persistence in the level of health expenditures over time: estimates for the US population, 2008–2009 (Statistical Brief no. 354); 2012. 〈http://meps.ahrq.gov/mepsweb/data_files/publications/st354/stat354.shtml〉 Accessed 12 May 2017. 4 Hayes SL, Salzberg CA, McCarthy DM, et al. High-Need, High-cost Patients: Who Are They and How Do They Use Health Care? August: The Commonwealth Fund; 2016. 〈http:// www.commonwealthfund.org/publications/issue-briefs/2016/aug/high-need-highcost-patients-meps1#/#Study〉 Accessed 18 June 2017. 5 Institute of Medicine (US) Committee on the Consequences of Uninsurance. Hidden Costs, Values Lost: Uninsurance in America. Washington (DC): National Academies Press (US); 2003. 3, Spending on Health Care for Uninsured Americans: How Much, and Who Pays? pp. 38–62. Available from: 〈https://www.ncbi.nlm.nih.gov/books/ NBK221653/〉 Accessed 12 May 2017. 6 CMS. Medicaid Health Homes. 〈https://www.medicaid.gov/medicaid/ltss/healthhomes/index.html〉 Accessed 12 May 2017. 7 Center for Health Care Strategies, Medicaid Accountable Care Organizations: State Update; 2017. 〈http://www.chcs.org/media/ACO-Fact-Sheet-01-30-17.pdf〉 Accessed 12 May 2017. 8 Comprehensive Primary Care Plus initiative of the Centers for Medicare and Medicaid Services (CMS). 〈https://innovation.cms.gov/initiatives/comprehensive-primarycare-plus〉 Accessed 12 May 2017. 9 NCQA. Patient-Centered Medical Home (PCMH) Recognition; 2017. 〈http://www.ncqa. org/Programs/Recognition/Practices/PatientCenteredMedicalHomePCMH.aspx〉 Accessed 12 May 2017. 10 Kushel MB, Vittinghoff E, Haas JS. Factors associated with the health care utilization of homeless persons. JAMA. 2001;285:200–206. 11 Strauss A, Corbin J. Basics of Qualitative Research. Newbury Park, CA: Sage Publications; 1990. 12 Glaser BG, Strauss AL. The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago, IL: Aldine Publishing Company; 1967. 13 Giacomini MK, Cook DJ. Users' guide to the medical literature: XXIII. qualitative research in health care A. Are the results of the study valid? JAMA. 2000;284:357–362. 14 Emmons KM, Rollnick S. Motivational interviewing in health care settings: opportunities and limitations. Am J Prev Med. 2001;20:68–74. 15 Zola IK. Structural constraints in the doctor-patient relationship: the case of noncompliance. In: Eisenberg L, Kleinman A (eds). The Relevance of Social Science for Medicine. Boston, MA: Reidel Publishing Company, 1981:241–52. 16 Deegan. P. Hearing Voices Curriculum;. 〈http://www.power2u.org/mm5/merchant. mvc?Screen=PROD&Store_Code=NEC&Product_Code=CurriculaHearingVoicesDistressing&Category_Code=hearingvoices〉 Accessed 12 May 2017. 17 Patterson S, Goulter N, Weaver T. Hearing voices simulation: process and outcomes of training. J Ment Health Train Educ Pract. 2014;9:46–58. 18 Hopper EK, Bassuk EL, Olliver J. Shelter from the storm: trauma-informed care in homeless services settings. Open Health Serv Policy J. 2010;3:80–100. 19 Felitti VJ, et al. Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults: the adverse childhood experiences (ACE) study. Am J Prev Med. 1998;14:245–258. 20 See, for example, National Center for Trauma-Informed Care, Substance Abuse and Mental Health Services Administration (SAMSHA), Trauma-Informed Approach and Trauma-Specific Interventions; 2015. 〈http://www.samhsa.gov/nctic/traumainterventions〉 Accessed 12 May 2017. 21 Institute of Medicine (IOM), Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, D.C: National Academy Press; 2001. 22 Non Prescription Needle Use Initiative. Working with people who use drugs: A harm reduction approach. Edmonton, AB; 2007:7. 〈http://librarypdf.catie.ca/PDF/PCatie/ 24911.pdf〉 Accessed 12 May 2017.
4. Conclusion Competencies, including those known and taught in fields other than primary care, were found to have distinctive application to delivery of primary care to populations with complex needs, including: motivational interviewing for establishing patients’ priorities and helping them improve their health on their own terms; trauma-informed care for modifying primary care procedures to mitigate the illeffects of prior trauma prevalent in this population; and harm reduction for altering medical regimens to accommodate constraints on what patients are able or willing to do. Other capabilities, cultivated by these programs, include empathizing with patients, promoted by exposure to simulations of patient experiences (e.g., hearing voices); and withholding judgment and counteracting patient passivity to foster open discussion of treatment plans. While prior research concentrates mainly on issues of financing and quality, this study addressed requisite competencies for delivering effective care to this population. The findings suggest that deliberate attention to preparing providers to apply these competencies in caring for high-needs patients is critical to engaging them in care and achieving desirable outcomes. This investigation benefited from an inductive research strategy, analyzing the in-depth responses of 30 providers at 23 programs experienced with caring for high-needs patients. The focus was on their views of competencies central to their effectiveness. Providers were interviewed from programs embracing varied models and employing staff from diverse disciplines; as such, they were well-positioned to identify the relevance of a broad spectrum of expertise to delivering primary care to this population. The research strategy also shares the limitations of qualitative studies. Its facility for breadth in considering requisite competencies is paired with its incapacity to test causal relationships between those competencies and outcomes. Similarly, the richness of insight forthcoming from extensive, open-ended interviews is matched with the inability to establish the frequency with which outlooks are shared among the general population of providers. Nevertheless, while the generalizability of our findings cannot be empirically determined, elements of the study design, in particular the systematic sampling and richness of data collection, are geared toward enhancing the relevance and cogency of the conclusions. Conflict of interest and author declaration To the best of my knowledge, I do not have any relationships, financial or otherwise, that constitute conflicts of interest as described in Elsevier's Conflict of Interest Factsheet. In addition, the funding source for the research, the Robert Wood Johnson Foundation, did not have any involvement in the design, conduct, and reporting of findings of the study.
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Competencies for engaging high-needs patients in primary care Michael J. Yedidia Center for State Health Policy, Rutgers University, 112 Paterson Street, 5th Floor, New Brunswick, NJ 08901, United States
A B S T R A C T Background: Patients who heavily utilize hospitals and emergency departments frequently have complex needs requiring services spanning medical, behavioral, and social service sectors. This study identifies essential competencies for caring for high-needs patients and highlights their importance to primary care delivery. Methods: Transcripts of in-depth interviews with 30 clinical and administrative staff at 23 complex care programs across the United States were analyzed using standard qualitative techniques. Selected programs had several years of experience in serving patients with multiple chronic conditions, serious mental illness, substance use disorders, severe poverty, and homelessness. These programs exemplified diverse models (assertive community treatment, housing first, behavioral health, high utilizer), and all of them shared the common element of integrating primary care into their services. Results: Competencies, including those known and taught in other fields, have distinctive application to informing delivery of high quality primary care to populations with complex needs, including: motivational interviewing for establishing patients’ priorities and helping them improve their health on their own terms; trauma-informed care for modifying primary care procedures to mitigate the ill-effects of prior trauma prevalent in this population; and harm reduction for altering medical regimens to accommodate constraints on what patients are able or willing to do. Other capabilities, cultivated by these programs, include empathizing with patients, promoted by exposure to simulations of patient experiences (e.g., hearing voices); as well as withholding judgment and counteracting patient passivity to foster open discussion of treatment plans. Conclusions: Absence of deliberate attention to equipping providers with specific competencies for caring for high-needs patients may contribute to lack of patient engagement and sub-optimal outcomes, ultimately undermining the success of programs serving these populations.
1. Introduction Patients who heavily utilize hospitals and emergency departments for routine care often have complex health challenges including multiple chronic conditions, mental illness and substance use disorder, and frequently suffer from severe deprivation including homelessness, hunger, and other sequelae of poverty.1,2 These patterns of utilization generate high costs; it is well established that the most costly 5% of all patients account for nearly 50% of health expenditures,3 and highneeds populations are often represented in this high-cost cohort.4 Given the socio-demographic background of this population, the burden of these costs is often borne by state Medicaid programs, by charity care programs, and by hospitals, clinics and other providers.5 Policymakers have responded by exploring financing mechanisms intended to enable primary care providers to devote time and resources to serve the broad spectrum of needs of these populations, with the aim of reducing costs and increasing quality of care. For example, the Centers for Medicare and Medicaid Services (CMS) have created flexible
payment methodologies to support Medicaid health homes6 which are designed to broaden the scope of needs addressed for people with chronic conditions; several states have initiated demonstrations of Medicaid Accountable Care Organizations offering shared savings arrangements as incentives to reduce costs and improve quality7; CMS has supported payment redesign to give primary care practices resources for investing in care coordination strategies for increasing quality and reducing delivery of unnecessary services8; and the National Committee for Quality Assurance (NCQA) has set up an accreditation process to recognize superior performance of patient-centered medical homes with regard to quality, costs, and patient experiences.9 All of these initiatives seek to address the needs of patients with complex needs. Accounts of the experiences of high-utilizing patients suggest that they often seek treatment when they are in crisis, may not follow through with referrals, frequently have difficulties adhering to treatment regimens, and lack sustained relationships with primary care providers.1,2,10 These common attributes co-exist in a patient's experience at one of the research sites studied here, quoted from a provider
E-mail address: [email protected]. http://dx.doi.org/10.1016/j.hjdsi.2017.06.005 Received 10 January 2017; Received in revised form 21 June 2017; Accepted 25 June 2017 2213-0764/ © 2017 Elsevier Inc. All rights reserved.
Please cite this article as: Yedidia, M.J., Healthcare (2017), https://doi.org/10.1016/j.hjdsi.2017.06.005
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This study was designed to identify necessary competencies for effectively engaging patients with complex needs in primary care. The research strategy was premised on the assumption that expertise developed and applied in varied fields has relevance for providing high quality primary care for these populations. Programs were selected for study that exemplified a wide range of care models to assure varied perspectives and disciplinary backgrounds of providers. All programs shared the common element of primary care integration.
interview in the textbox below. The significance of these challenges underscores the importance of preparing providers with appropriate expertise to more successfully engage these patients in care and effectively address their needs. Account of the Experiences of a Patient Cared for at a High Utilizer Program Quoted from a Provider Interview from this Study Max (a pseudonym) was a heroin addict, and had COPD and was homeless. He was 58, and every time he came in to the hospital or ED, he’d get put in the ICU because his oxygen levels were so low. As he’d get better, he would start demanding things. He loved chocolate Ensure on ice. But he wasn’t [asking for] it in a very nice way. And then, as soon as he could get up and walk, he’d — walk out, not having follow up care, not picking up his discharge medications and not caring what was going on with his health because he was going to look for his next fix. So I helped Max to get housed first. That was the first thing he wanted to work on. I also, upon discharge, helped him pick up his medications. It took another couple times to figure out where he was going to keep them, so that he didn’t keep losing them and how he was actually going to take them. Because some of them required things like—they wanted him to take Lasix and he was like, “I’m not going to take that. Because I don’t have a bathroom close enough to me all the time, so I’m just not going to take it.” And [I had to] help the providers understand that that wasn’t an option and they’d have to come up with a plan B. And so we went to primary care appointments with each other. We went to housing meetings. We got all the things together that he needed for housing, like ID, and all that sort of thing. He expressed at one point that his fondest wish was to be back in contact with his family. And that they would not speak to him while he was still using. So over time, he decided that it would be worth his while to get on Methadone. So as he got housed, he also went to his intake for his Methadone and started with that. And the doctors had told him over and over again that he wasn’t going to live another two years because of how often he was here and how low his O2 stats were. And he made it five years. And his family was here when he passed. But he was housed and he was happy, and he was back in contact with his family before he passed away. So, I think that’s terribly successful.
2. Methods A qualitative methodological approach was dictated by the purpose of the study – to learn about competencies essential to the roles of providers in programs with extensive experience in serving high-needs patients. Data were collected through extended, open-ended interviews with clinical and administrative staff of 23 systematically selected programs. The sampling strategy reflected the dual emphasis on identifying relevant expertise from diverse disciplines and understanding its application in delivery of primary care. A broad net was cast in identifying types of programs for study. Sampling criteria and associated rationale are detailed in Table 1. The 23 programs selected for study are identified in Table 2. They are roughly characterized as originating in a behavioral health environment integrating primary care (7 programs); building on a housing program and integrating primary care and behavioral health (4 programs); and originating in a primary care program and integrating behavioral health and other services (12 programs). Thirty interviews were conducted, averaging 65 min in duration; respondents were encouraged to be as expansive as necessary to address the questions. Questions were sequenced to suit the inductive analytic approach, asking respondents initially to identify care functions critical to delivering services to this population, followed by questions on what they needed to know to perform them. The aim was to elucidate key competencies grounded in the care functions that compel their application. Topics focused on major care tasks and the expertise required for performing them, stories of successful and not-so-successful encounters with patients and factors that determined or impeded success, preparation and training of staff, and background information on characteristics of the patients they served and the composition of their care team(s). Additional items focused on support for staff and avoidance of burnout, topics that are not the focus of this study. A copy of the interview questionnaire is included in the Appendix. The study was approved by the Institutional Review Board at Rutgers University. All of the interviews were audio-recorded and fully transcribed. Analysis of the transcripts relied upon standard qualitative
Table 1 Sampling strategy for selecting programs for study. Inclusion criteria
Rationale
The program was equipped to care for people with multiple chronic illnesses, serious mental illness, substance use disorder, severe poverty, homelessness or housing insecurity; and legal, language, and/or cultural barriers.
Needs associated with these conditions are frequently those experienced by complex patients.
The program embraced a broad spectrum of models including assertive community treatment, housing first, behavioral health, and high user programs.
These models rely upon diverse disciplines and associated expertise, which is suited to detecting a broad scope of competencies relevant to caring for these patients.
The program integrated delivery of primary care services as central to its purpose.
The study is designed to make explicit the relevance of competencies to engaging patients in primary care.
The program offered documentation of extensive experience in serving the scope of needs outlined above.
The practices of successful programs have promise in yielding lessons worthy of broader application.
The program had sufficient longevity (at least 5 years) to suggest a stable model and had survived any initial challenges with respect to staffing and training.
Perspectives and patient-care strategies are grounded in sustained and varied experience.
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Table 2 Characterization of the research sites. Program Behavioral health Austin Travis County Integrated Care (ATCIC);Austin, Texas Community Health and Counseling Services (CHCS), Maine Harborview High Utilizer Program, University of Washington; Seattle, WA Institute for Community Living (ICL), New York, NY Operation Safety Net, Mercy Community Health, Pittsburgh, PA AIMS Center, University of Washington, Seattle Vermont Blueprint for Health Vermont Housing first Bonita House; Oakland, CA Colorado Coalition for the Homeless; Denver, CO Pathways to Housing, Philadelphia, PA Project Renewal; New York, NY Primary care Camden Coalition of Healthcare Providers; Camden, NJ CareOne, New Mexico; Albuquerque, NM CareOregon Health Resilience Program;Portland, OR Cherokee Health Systems; Tennessee Clinica Esperanza, San Francisco, CA Community Care of North Carolina;North Carolina Core Center, Chicago;Chicago, IL Coordinated Care Center, Hennepin County Medical Center; Minneapolis, MN Community Paramedics Program, North Memorial Health Care, Robbinsdale MN Central Oregon Health Council Health Integration Project Community Outreach & Patient Empowerment Program, Partners in Health, Navajo Nation, Window Rock, AZ Transitions Clinic, UC San Francisco School of Medicine; San Francisco, CA
Description
Website
Primary care integrated into behavioral health settings Behavioral health home, primary care integrated; rural settings Behavioral health and social services collaborating with primary care providers serving ED patients Primary care integrated into behavioral health Primary care integrated into behavioral health
http://www.integralcare.org/ http://www.chcs-me.org/ http://www.kingcounty.gov/~/media/health/MHSA/ MIDD_ActionPlan/PES_Liaison_High_Utlizer.ashx http://www.iclinc.net/ https://www.pittsburghmercy.org/operation-safety-net/
Primary care integrated into behavioral health Integration of substance use (opioid treatment) and primary care
https://aims.uw.edu/ http://blueprintforhealth.vermont.gov/
Housing First; ACT team; behavioral health; primary care Housing, integrated primary care and behavioral health Housing First; ACT team; behavioral health; primary care Housing First; behavioral health; primary care
http://www.bonitahouse.org/
High-utilizing patients; care coordination across services High-utilizing patients Behavioral health integrated into primary care sites Behavioral health integrated into primary care Integrated care for HIV+ Patients Behavioral and social services integrated into primary care Behavioral health, social services and primary care integrated into HIV/AIDS services Care for high utilizing patients
https://www.camdenhealth.org/
Behavioral health and social services integrated into primary care Coordinated behavioral, social service, and primary care among patients with high ED use Integrated services relying heavily on community health workers Integrated services for former prisoners
techniques.11 Glaser and Strauss’ approach to analysis12 was used to identify major concepts: two researchers independently coded each interview, noting recurrent themes and linking them to lines in the transcript, entering verbatim text into electronic files for each coded theme, subdividing categories of text to refine concepts, and examining how the themes relate to the overall aim of the study – identification of essential competencies for performing tasks central to effective care of this population. Passages and codes were shared among the researchers and discrepant interpretations were discussed and resolved. Verbatim quotes reported here are associated with the program types (see Table 2 for categorization of research sites). Those interviews coded toward the end of the analysis did not reveal new competencies, indicating that the codes were exhaustive (achieving theoretical saturation in the terminology of qualitative methods12,13). Where appropriate, frequencies with which respondents referenced particular competencies are reported. However, consistent with the inductive strategy, questions did not ask respondents to comment on a specified set of competencies. Consequently, frequencies are not reliable estimates of the extent to which particular competencies and their mode of application are endorsed by all respondents; they are conservative indicators of the prevalence of particular points of view. The report of findings was shared with the research sites; feedback confirmed the salience of the findings to practice (member-checking13).
http://www.coloradocoalition.org/ https://pathwaystohousingpa.org/ http://www.projectrenewal.org/
http://emed.unm.edu/ http://www.careoregonspirit.org/SPIRIT_weekly/ Resilience.html http://www.cherokeehealth.com/ http://www.mnhc.org/medical_services/clinica-esperanza/ https://www.communitycarenc.org/ http://www.cookcountyhhs.org/locations/ruth-mrothstein-core-center/ https://www.hcmc.org/clinics/HCMC_P_048828 https://www.northmemorial.com/communityparamedic http://cohealthcouncil.org/ http://www.pih.org/country/navajo-nation http://transitionsclinic.org/transitions-clinic-network/
3. Results 3.1. Patient engagement Engaging patients with complex needs in services is often challenging given the extreme circumstances under which they come into contact with providers. Providers were asked to recount stories of successful and unsuccessful encounters with patients. Prominently mentioned in these stories were challenges associated with the urgency and magnitude of patients’ needs, the gulf between their life experiences and those of providers who seek to help them, and lack of sustained connections with services. Other stories focused on the effects of previous traumatic experiences which may have contributed to alienation from service providers, and lack of alignment between the benefits promised by available services and patient's priorities and topmost concerns. To establish rapport under these circumstances, providers consistently cited the importance of “meeting patients where they are”, applying systematic strategies for eliciting patients’ perspectives on their needs and responding to their concerns. The competencies they relied upon and their relevance to primary care delivery are reported below.
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Or – “When you forget—what medicines do you seem to forget?” Or, “Did you take it today?” And just make it not judgmental. Because patients who are disenfranchised, you know, they feel very judged and you want to create an atmosphere of partnership and engagement. And say, “Hey, if you’re not doing something, it's our responsibility as well as yours.” Since we probably set the goal — incorrectly. (Primary Care Program)
3.1.1. Motivational interviewing Motivational interviewing was cited by respondents in 18 of the programs as a key competence. Their discussions of its application in serving high-needs patients differed markedly from its typical use as a means of evaluating patient's readiness for behavior change and for pursuing related goals.14 Rather, the scope is expanded and the agenda is more open-ended; the aim is to establish what patients want and care about, and draw on that knowledge to help them improve their health and stability on their own terms. Max, for example (see textbox), volunteered that one of his greatest hopes was to resume regular contact with his family but that none of his family members would talk to him while he was still using heroin. With the goal of reuniting with his family, he decided it would be worthwhile to get into a Methadone program, which the staff successfully facilitated. Critical to this process, providers in almost all of the programs spoke of placing great importance on letting patients tell their stories – at their own pace, without interruptions. While intuitively important, such listening is rare and difficult to incorporate in a busy primary care practice. Respondents at five programs, while valuing this practice, volunteered that the need to accommodate the required investment of time in the visit schedule was a constraint and source of stress for clinicians.
3.1.3. Promoting empathy Several respondents acknowledged the importance of promoting provider empathy with the circumstances of their patients and appreciation of how difficult it may be for them to be seeking help. If they get someone in their office who is a voice hearer, or has other kinds of symptoms of schizophrenia, [we encourage our providers] to not be patronizing, and to not dismiss what the possibilities are, — but to understand what someone is grappling with, just to get to the office, to make it on time, to not be pissed off if someone is late or misses an appointment, to understand that to try to fill out that paperwork with that yammering in someone's head, is a huge, huge thing. (Housing First Program) Programs attempt to promote empathy in these circumstances through role-modelling and supervision. At one program, a more structured and explicit strategy is pursued: Providers are given firsthand experience of what it's like to experience severe impediments, such as those faced by people with schizophrenia. The training adopts the Hearing Voices Curriculum,16 which simulates the experience of hearing voices while participants undertake a series of activities, including social interaction in the community, a psychiatric interview, cognitive testing, and an activities group in a mock day treatment program. The simulation experience is followed by debriefing and discussion. While the experience is temporary, participants report that it can have a profound and lasting impact on their capacity for understanding the difficulties their patients confront and their motivation to be effective in communicating under these circumstances.17
3.1.2. Withholding judgment Patients who do not follow through on treatment recommendations often do not discuss their concerns when they are given advice and do not acknowledge them in later interactions with their providers. Anticipating this response, and believing that it is the norm for many of their patients, leaders of several programs encourage providers to be proactive, making it easier for patients to share their apprehensions; according to a clinician at one of these sites: It has to be OK for a patient to say, “I don’t want to do that.” Or, “I didn’t do it.” And I think that very often you get this kind of culture where people will say, “Yes,” and at that moment they just want to please the provider. But that really at the end doesn’t serve anybody. (Primary Care Program)
3.1.4. Trauma-informed care Experience of trauma is prevalent among populations who have encountered extreme poverty, homelessness, and/or violence.18 Programs that aim to serve such clients generally acknowledge the potential effects that such trauma may have on patients’ responses to care and increasingly familiarize their staffs with strategies embodied in trauma-informed care. All of the programs studied here served these populations, and 17 of them cited trauma-informed care as relevant to their practice.
Focusing explicit attention on counteracting patient passivity, according to supervisors at three sites, is a necessary response to patients who feel powerless and may naturally suppress their concerns and align themselves with their perceptions of provider expectations. The concern is that in the absence of a genuine interaction wherein patient preferences can be voiced and providers have the opportunity to address them, patients are not likely to follow through with their providers’ advice. Providers express frustration when their well-intended efforts and advice are unheeded. Complex, high-needs patients challenge their ability to succeed, generating tension and frustration that hinder effective relationships.
[Training on trauma-informed care focuses] on an understanding of the correlation between childhood adverse experiences or trauma and someone's future of psychosocial struggles and chronic diseases. So that's a key platform to start from for medical audiences—the ACEs [Adverse Childhood Experiences] study19 talking about the effects on the brain and the neural biology that people's brains rewire themselves when they’re exposed to trauma. And to then appreciate that people aren’t being willful or stubborn or noncompliant. That their behaviors are driven from a neurobiological reason oftentimes. (Primary Care Program)
Many people get mad at [clients who are addicted] and blame them [saying] things like, ‘They’re just here for three hots and a cot’ when they’re just continually being brought in by an ambulance. (Primary Care Program) Training and supervision in these settings seek to normalize “noncompliance” as a legitimate response. This practice follows from recognition, articulated decades ago and guiding subsequent research,15 that regularly taking medicine or adhering to other regimens is not a natural experience for many people, and unquestioned acquiescence is not necessarily a rationale response to providers’ initial treatment recommendations. Providers are coached to frame their questions and comments in neutral, non-judgmental terms and are given feedback on the tone and substance of their interaction with patients. A trainer at one of the sites advises:
A subset of programs initiated staff training programs acknowledging that provider behaviors and procedures that are commonplace in primary care delivery and are undertaken with little forethought or reflection in most contexts may pose severe distress to those patients who have been exposed to past trauma. You don’t think a referral is going to re-traumatize someone, but if they have the wrong paperwork and they ended up at the specialist's office, and they get turned away, you know, like that's re-traumatizing. So, even the littlest thing can be really, really rough on the person. (Housing First Program)
You say—“When are the times you don’t take your medicine?” 4
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These aspects of care may remind these patients of circumstances associated with the traumatic event and may cause them to relive it and view the health care setting as a source of distress. Onsite training programs were designed to promote a constant awareness of the potential for activation of this dynamic and focused on recognizing behavioral cues in the course of interacting with patients and making realtime adjustments in their approaches.
unrealistic. In such cases, as reported by respondents at 12 programs, a harm reduction strategy was often pursued; patients were engaged in taking incremental steps to reduce damage from drug use.22 Applying a harm reduction perspective more broadly to primary care, beyond treatment of addiction, second-best options may be pursued when the alternative is to allow medical conditions to go untreated. As evidenced in the sites studied here, social realities (e.g., no access to refrigeration for medicines, competing priorities for limited resources), which are prevalent among high-needs patients, often preclude implementation of favored treatment regimens. Max's response to a routine prescription for Lasix, for example, was:
Appreciating that when someone is very emotional that you need to remain calm, that behavior is telling you they’re frightened or scared. And that when they come into clinics being told what to do does not help someone calm down. So we aim at helping people calm themselves. (Primary Care Program)
I’m not going to take that. Because I don’t have a bathroom close enough to me all the time, so I’m just not going to take it.
In addition to such relatively spontaneous assessment and response, effective care may require systematic adjustments in the pace of service delivery, identifying sources of fear and proceeding incrementally over time to assist patients in coping with them.
Thoughtful consideration of a harm reduction approach in this context was deemed appropriate in many settings (comments from three are quoted in this section).
We spend a lot of time going to doctor's appointments where the person never actually sees the doctor. You know, we go back, and we go back until they’re ready to get there. (Housing First Program)
If I feel like someone needs a medication for hypertension or diabetes, and they [refused to] get any bloodwork at all, I might start a medication with the least side effects, even though I would want to have bloodwork before I did that. If I can’t get it, I start something and then work towards getting the bloodwork. —- If they have diabetes, for a lot of folks, I’m just going for not having hyperglycemia or hypoglycemia; we’re not trying to fine-tune the glucose levels, at least initially. We do very simple insulin regimens with a lot of folks in the beginning, just getting them used to that. And, you know, [some colleagues] would say just using one long-acting insulin, is that really the way to treat someone? But it actually works fine for us. (Housing First Program)
Implementing this approach in ongoing practice requires appropriate staffing. A key function of community health workers in five of the programs was to provide peer support to patients, accompany them to visits, and assist them with paperwork and other tasks in securing services. Once the relevance of trauma-informed care is recognized, there are excellent resources for applying it in practice.20 These materials focus on dimensions of good patient care (e.g., engage and develop trust over time; give relaxed, unhurried attention; talk about concerns and procedures before doing them; validate concerns as understandable and normal, and accommodate these concerns when possible). These principles are not unknown to primary care providers, but the high priority accorded them in several of the practices underscored a concern that insufficient attention to them can be particularly costly in caring for high-needs patients.
Discussions of the need to make adjustments in response to social constraints were balanced with concerns about practicing evidencebased medicine. Compromises in the short run were viewed as a prelude to eventually persuading the patient to get a more complete work-up – i.e., having the bloodwork to monitor blood pressure medication or fine-tuning diabetes control. Deliberate pacing of the care-plan may be critical to engaging the patient in treatment.
3.2. Patient-centered agenda
I try and offer what I would want to do. And then backtrack from there to see what the person is actually willing to do…. [We have a compulsion] “Oh, this person hasn’t seen a doctor in ten years, I’ve got to do everything for them”—I make a plan and do that over several visits, over time. (Housing First Program)
High-needs patients by definition are contending with a broad spectrum of issues that command attention. It follows that patientcentered care plans,21 responsive to individual patient preferences and values, are particularly important for this population. At the same time, respondents noted that eliciting patient priorities and accommodating them in a care plan pose distinctive challenges in view of the barriers to effective engagement reported earlier. They reported on specific strategies and associated competencies to address them.
Doing all one can as a provider extends to honoring the boundaries regarding what patients are willing to do. (Behavioral Health Program) Inherent in adopting a harm reduction approach is the need to revise expectations regarding success, setting realistic goals for the benefit of the patient as well as providers. For staff of the high utilizer program caring for Max, in addition to his having lived three years beyond what his doctors initially told him, they viewed his experience as successful based on the fact that over that period he was back in contact with his family, who were with him when he died, and he had gotten stable housing. An administrator at a housing first program echoed this outlook:
3.2.1. Setting the agenda Patient preferences may become apparent during the course of a routine visit, fostered by providers’ use of motivational interviewing and patients’ recounting of their stories. In some settings deliberate processes are employed to make these priorities explicit. At one program, toward the end of an initial encounter, based on the history and associated discussion, providers list needs which they are prepared to address on cards, and patients are asked to sort them in order of the importance of getting help. What happens, however, when patient preferences conflict with provider conceptions of best practices? This prospect, inevitable as it may be, is not often addressed in discussions of the importance of delivering patient-centered care.
We measure success differently than a lot of people do. We look at success as, you know, someone has retained their housing. They are happy in terms of what they define as happiness — they’re eating, they’re getting some healthcare, they’re bathing occasionally. Their house is habitable. (Housing First Program) For providers seeking to implement evidence-based interventions, existing metrics focused on stability of medical conditions are inadequate for assessing the efficacy of their work with high-needs populations and devoting attention to them may divert energies from more meaningful activity.
3.2.2. Harm reduction Attention to approaches to handling such conflicts was most prominent in this study among the subset of programs that are based in housing first and behavioral health settings. For many of their patients treated for substance use, abstinence as a goal was viewed as 5
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Acknowledgements
We’ve been around a long time now—enough time that people are able to retrospectively look back and see the incredible strides that so many of our folks have made, folks that initially would not have even gotten into services, might have been written off, would have thought there's no chance for this person, there's no hope. (Housing First Program)
Mary Nell Quest, Ph.D. assisted in interviewing and contributed to the analysis. Jennifer Farnham, M.S. also assisted with interviews. The program sites were generous with their time and thoughtful in their responses. The research was funded by a grant from the Robert Wood Johnson Foundation (#71458).
Discussing the relationship between maintaining realistic expectations and upholding staff morale, a clinician characterized a dominant mood at death rounds (meetings to review the care of patients who have died) with an oft-voiced observation:
Appendix A. Supporting information Supplementary data associated with this article can be found in the online version at http://dx.doi.org/10.1016/j.hjdsi.2017.06.005.
What's been so significant for people is knowing that the individuals who have passed would not have lived anywhere near as long if we were not involved with them and if we did not have integrated healthcare with them. (Housing First Program)
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4. Conclusion Competencies, including those known and taught in fields other than primary care, were found to have distinctive application to delivery of primary care to populations with complex needs, including: motivational interviewing for establishing patients’ priorities and helping them improve their health on their own terms; trauma-informed care for modifying primary care procedures to mitigate the illeffects of prior trauma prevalent in this population; and harm reduction for altering medical regimens to accommodate constraints on what patients are able or willing to do. Other capabilities, cultivated by these programs, include empathizing with patients, promoted by exposure to simulations of patient experiences (e.g., hearing voices); and withholding judgment and counteracting patient passivity to foster open discussion of treatment plans. While prior research concentrates mainly on issues of financing and quality, this study addressed requisite competencies for delivering effective care to this population. The findings suggest that deliberate attention to preparing providers to apply these competencies in caring for high-needs patients is critical to engaging them in care and achieving desirable outcomes. This investigation benefited from an inductive research strategy, analyzing the in-depth responses of 30 providers at 23 programs experienced with caring for high-needs patients. The focus was on their views of competencies central to their effectiveness. Providers were interviewed from programs embracing varied models and employing staff from diverse disciplines; as such, they were well-positioned to identify the relevance of a broad spectrum of expertise to delivering primary care to this population. The research strategy also shares the limitations of qualitative studies. Its facility for breadth in considering requisite competencies is paired with its incapacity to test causal relationships between those competencies and outcomes. Similarly, the richness of insight forthcoming from extensive, open-ended interviews is matched with the inability to establish the frequency with which outlooks are shared among the general population of providers. Nevertheless, while the generalizability of our findings cannot be empirically determined, elements of the study design, in particular the systematic sampling and richness of data collection, are geared toward enhancing the relevance and cogency of the conclusions. Conflict of interest and author declaration To the best of my knowledge, I do not have any relationships, financial or otherwise, that constitute conflicts of interest as described in Elsevier's Conflict of Interest Factsheet. In addition, the funding source for the research, the Robert Wood Johnson Foundation, did not have any involvement in the design, conduct, and reporting of findings of the study.
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