Dr. Michael Franczak, noted psychologist and population health scientist, sagely noted, “The continuum of care is really a series of swinging bridges over a very large canyon.” Dr. Franczak’s language is poignant for families who long assist loved ones to navigate the particularly deep and wide “canyon” of chronic serious mental illness. These families know that “provider culture matters.” But too often, when we decide to redesign or add a bridge to the COC, we overlook these families as a valuable source of information about provider cultures.
Nearly all behavioral health providers claim to be “person-centered”. Most are not. Most are “program-centered” — the patient must “fit” the program or move on. If you can’t make it on a given bridge, you fall off or have to make it on your own – back or ahead. Consequently, individuals living with chronic, serious mental illness often get ejected because the severity of their illness interferes with their ability to participation in “encounters. Or their behaviors — which arise from their mental illness — are deemed “just not a good fit” for the program. The individuals are expected but often unable to find footing (stay stable) and hang on to the swinging bridge. They often end up homeless, re-hospitalized, arrested, or fall off the COC tumbling into the canyon. And this cycle often repeats many times.
Patient-centered care describes an approach to providing health care in a manner that emphasizes and respects the needs, values, and choices of patients (Australian Commission on Safety and Quality in Health Care, 2010). It has been delineated into five key dimensions: (a) viewing health in a holistic manner, (b) seeing the patient as a person with needs that extend beyond their illness, (c) sharing power and responsibility with patients and helping them collaborate in their own care, (d) building therapeutic alliance with patients and maximizing the therapeutic value of the patient-provider relationship, and (e) understanding how the personal qualities of the provider influences quality of care (Mead & Bower, 2000). Recovery-oriented care shares many of these same features (U.S. Department of Health and Human Services, 2009). Published research on patient-centered care and the related topics of patient engagement and recovery-oriented care have begun to demonstrate that involving patients in care processes, including the planning and the delivery of health services, will improve outcomes (Resnick & Rosenheck, 2008; Sidani, 2008; Warner, 2010). James D. Livingston, Alicia Nijdam-Jones & Johann Brink (2012) A tale of two cultures: examining patient-centered care in a forensic mental health hospital, Journal of Forensic Psychiatry & Psychology, 23:3, 345-360, DOI: 10.1080/14789949.2012.668214
The behavioral health industry incentivizes “program-centered” delivery by financially rewarding organizations that serve a large number of members with services appropriate for most members and for which the program is guaranteed reimbursement. Providers sometimes achieve good performance metrics by rejecting or ejecting “high-utilizers” who need more services than existing performance measures identify and incorporate, and which are expensive and difficult to provide in “standard” programs. Whether a given program “cherry-picks” members for financial gain or ease of practice or lacks adequately trained and experienced staff, the result is the same: individuals living with chronic SMI often get excluded and tumble into the canyon below. Their recovery journey is interrupted, sometimes perilously ended.
Some providers are truly “person-centered”. These providers develop ways to use program protocols as guidelines, but they develop meaningful Individual Service Plans (ISPs) to support each patient’s progress in a strength-based, person-centered recovery journey. The program adjusts to fit the person, not vice versa. These providers create ways to steady the swinging bridges. The individual is able to remain on the recovery journey, perhaps pausing longer on one bridge than other individuals in order to stabilize. Truly person-centered culture thus permits individuals to remain on the COC, move from bridge to bridge, avoid the perils in the canyon below, and gain strength to meet the challenges ahead.
When even a few families gather, we often hear and see remarkable information and wisdom gleaned through decades of lived-experience helping loved ones navigate the COC — swinging bridges and all. Family members “know” the frustrating (and dangerous) reality of an individual with chronic serious mental illness being ejected from programs due to the chronicity and severity of the very illness that brought the individual to the program. Family members keep journals, photos, arrest records, bills from hospitals emergency rooms, and more. When we stitch together family stories about different providers’ culture of care over time in a given locale, we gain deeper understanding of how specific provider’s culture facilitates or impedes a recovery journey, especially for those living with chronic SMI. The voice of persons with serious mental illness also have a very significant perspective that needs to be heard. Without shared responsibility for the treatment plan, most people struggle to achieve recovery.
Unfortunately, families often are excluded from meaningful interaction in many facets of the recovery model as often implemented by some providers. But families are least utilized in what may be the most important aspect of developing successful new programs to fil the gaps on the COC: evaluation of providers who run truly person-centered care. This is unfortunate and undermines fully informed public policy.
Family members often know which specific providers, despite being rewarded for “good numbers” under traditional performance metrics, may have done so at the expense of good care for hose living with chronic SMI. Family members can identify providers who are skilled enough and oriented to implement truly person-centered services in a strength-based recovery program. Family members know which providers manage to connect the swinging bridges on the COC, even for individuals who are non-adherent to treatment or have Anosognosia or must manage co-occurring disorders … or all of these.
As we try to find new, clinically appropriate options to fill gaps between the swinging bridges on the COC for those living with chronic SMI, qualitative factors should be more prominent in the selection of providers for programs and evaluation of providers across all programs. Qualitative factors may appear to be more difficult to evaluate, may appear somewhat subjective, and may be harder to “defend” than purely quantitative factors. The number of crisis interventions or hospitalizations is easy to count. Evaluating patient-centered culture is not so simple. But information from families is rich, powerful, and provides human insight not available from quantitative performance metrics. Contemporary mixed methods provider evaluation is possible and beneficial. And qualitative data gleaned from interviews with families about their experiences with specific providers will add “depth of understanding to complement breadth of understanding afforded by quantitative methods.” Palinkas LA. Qualitative and mixed methods in mental health services and implementation research. J Clin Child Adolesc Psychol. 2014;43(6):851–861.doi:10.1080/15374416.2014.910791. PMID: 25350675.
Family members of those on a recovery journey with chronic serious mental illness are an important source of information to identify providers who offer truly patient-centered care for those living with chronic serious mental illness. Providers with demonstrated person-centered culture should be embraced as essential to steadying those swinging bridges in the COC for those living with chronic SMI and trying to traverse the very large canyon below.
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