Caring for the Whole Person: Two Patient Stories in Complex Care Management

Contributed by the SNP Alliance

Over the last several years, the health care industry has moved toward a more comprehensive definition of the complex care patient.

As we have become more conscientious in defining complexity, we have also become more distant from the realities of patients’ lives, which drive the efficacy of their treatment. Early definitions of complex care focused on specific diagnoses, numbers of diagnoses, or types of medications.

A highly cited study from the University of Colorado attempted to define the typology of the “complex patient” in primary care based on primary care physician’s input. The authors define four categories: medical complexity; socioeconomic factors exacerbating medical conditions; mental illness exacerbating medical conditions; and patient behaviors and traits that contributed to challenges in care.

The problem with this and similar frameworks is the primary focus on medical complexity, and not on the person receiving care. Effective complex care means first understanding the individual and the challenges they face in their day-to-day lives. Fortunately, this idea is becoming more prevalent in the design of complex care programs.

A more complete taxonomy was presented by the National Academy of Medicine in their 2017 report, Effective Care for High-Need Patients: Opportunities for Improving Outcomes Value and Health.  In this report, they described six clinical and functional groups — children with complex care needs and adults with medical co-morbidity, disability, medical complexity, frailty, and advanced illness. This type of intrasectional scholarship places the patient and their experience at the center of the care discussion.

Dr. Sepideh Chegini, Senior Medical Officer for CareMore Health’s Touch program — an institutional special needs program — faces the challenges of person-centered complex care management on a daily basis. CareMore Health, a care delivery system and a subsidiary of Anthem, cares for more than 150,000 of the nation’s most high-need, high-cost patients across eight states. The CareMore program serves over 5,300 of those individuals in assisted living centers, nursing facilities, and group homes in four different states.

“True care integration for complex care goes beyond medical care,” Dr. Chegini says. “Care coordination for patients with complex care needs is more than mere disease management and a list of reminders. Caring for an individual with complex care needs means understanding the whole person — their lives, their ethics, their challenges, and, where appropriate, their family and caregiver support.”

To illustrate these points, she offered the following descriptions of real people she is working to help through the CareMore program. These patients have been de-identified to protect their privacy.

Meet Theodore

Theodore, who is 62 years old, suffers from major depressive disorder, anorexia nervosa, and alcohol dependency. He doesn’t always follow medical advice, and he has full capacity when he is not intoxicated. He often wound up in the hospital for alcohol intoxication, falls, malnutrition, and electrolyte problems. Theodore moved into several assisted living facilities, where Touch clinicians treated him to manage his care, but he was evicted due to frequent intoxication and alcohol abuse. CareMore deployed a multidisciplinary team-based approach to care for Theodore: primary CareMore clinicians provided oversight of Theodore’s care through frequent visits; the behavioral team performed medication management and counseling; social workers intervened to help with placement; and case managers helped coordinate the multiple providers and treatments. Theodore moved in to his mother’s home, where he was allowed to stay no longer than two weeks because of low-income housing regulations. CareMore case managers and social workers then helped Theodore find a new home at an independent living facility. The team continued outreach calls three to four times per week for support and stabilization. To date, the patient has continued seeing his behavioral health and primary care providers, and has abstained from drinking alcohol for almost two months. Theodore has also gained weight and improved his overall health.

Meet Laura

Laura, who is 45 years old, has bipolar disorder and diabetes and has been with CareMore since 2008. Two years ago, Laura’s mental health worsened considerably due to a “broken heart.” She experienced manic episodes followed by severe depression, including thoughts of suicide. Laura had a series of inpatient psychiatric hospitalizations, and, as a last resort, received electroconvulsive therapy (ECT) treatments. The ECT caused very minimal improvement in her psychosis and depression and left her with memory impairment and reduced impulse control. She became like a child mentally, her diabetic control worsened, and she gained weight. Laura was admitted to the hospital for diabetic ketoacidosis and a suicide attempt. Following hospitalization, Laura was placed in a skilled nursing facility, and then went to a group home. Laura was enrolled in CareMore’s program, and she started to see her CareMore nurse practitioner weekly, as well as the CareMore behavioral health team and case manager. Her health stabilized, and though she refused insulin, she managed her medications. With the support of the CareMore team, Laura’s HgA1c reduced from 13 percent to 7 percent within one year without further admissions to the hospital. Recently, Laura’s mental health condition worsened and she was admitted to a psychiatric nursing facility. CareMore’s social worker has continued to work with Laura, helping her to complete her Medi-Cal application and to find her to a more suitable living facility where she would receive medication management and other support. Caring for Laura has been difficult, but not unique among patients with complex needs.

These patients, like so many Americans with multiple chronic conditions, are at a crossroads in our health care system. They need regular, high-touch care across medical and behavioral health specialties. But they also need empathetic advocates who know their names, their stories, and their social barriers. Complex care ought to mean addressing the patient’s complexity first — then addressing the complexity of their medical treatment. It means engaging with them, starting with their perspective — always. Whether focusing on frail older persons or individuals with advanced illness, the approach is the same. It is only when we fully understand what the whole person needs that we can then begin to address the medical, behavioral, and social support they need to improve their lives.

Editor’s Note: This is the first in a series of posts on the Better Care Playbook blog by the SNP Alliance — the nation’s leading advocate for Special Needs and Medicare-Medicaid Plans — on the issues of complex care, care settings, and measurements of success. SNPA is grateful to demonstrate that its member plans are leaders in providing context and value, both embodied and interdisciplinary, to the discussion of person-centered care.