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A Systems Approach to Person-centered Healthcare: Lessons From End of Life

October 27, 2020

End-of-life care too often falls short of its promise to help a patient live fully—sacrificing quality of life for symptom management.

Editor's note: This article was originally published by the HCPro Accreditation & Quality Compliance Center by Kurt Merkelz, MD

When it comes to systemic improvement of our healthcare delivery system, there is no shortage of ideas.

Yet, even as the conversation has evolved to include important drivers of health outcomes such as the use of real-time data to guide interventions and care plans that address housing, transportation, and other social determinants of health, very little of what is discussed is truly actionable and easily scalable.

That’s why the National Quality Forum’s (NQF) recent report, The Care We Need: Driving Better Health Outcomes for People and Communities, is significant.

Much like the Institute of Medicine’s seminal report, To Err Is Human, which catalyzed healthcare around a systems approach to reducing preventable harm, the NQF report highlights actionable opportunities to scale efforts that have demonstrated the ability to improve quality, value, and safety.

One important difference is a new emphasis on delivering comprehensive, person-centered care. Recognizing that, too often, healthcare looks at a patient solely in terms of their debility, the NQF report is a call to re-orient the system around the patient and their unique goals and social, emotional, and spiritual needs.

With its focus on quality of life and interdisciplinary care teams of clinicians, social workers, and chaplains who are trained to understand the complex relationship between physical and emotional pain, the field of hospice and palliative care is uniquely suited for this new approach.

Yet, end-of-life care too often falls short of its promise to help a patient live fully—sacrificing quality of life for symptom management. When this happens, decisions are often based on assumptions rather than patient preferences.

This flawed approach extends to the measurement of quality and value. While the hospice industry has made significant strides in collecting data to track the delivery of care shown to produce better outcomes, there are still gaps. For example, Medicare-certified hospice providers are only required to assess a patient’s understanding of their Do Not Resuscitate (DNR) status. Simply asking the question checks the box—often resulting in a missed opportunity for meaningful dialogue around the patient’s goals for end-of-life care.

A new model of care

I believe we can do better. By identifying high-impact opportunities to support the delivery of consistent and predictable high-quality care and defining a series of actionable steps, hospice and palliative care providers can achieve many of the objectives outlined by the NQF.

My organization recently took the first step to heed this call. With input from a medical advisory board, interdisciplinary team members, patients, and families, we created a person-centered care model focused on seven key areas, including pain and symptom management, safety and autonomy, and quality of life.

The model, which has been implemented across a 159-location hospice community in 29 states, standardizes care around proven practices and provides a common framework for conversations with patients and family members. The goal is to create space to focus on the patient as an individual.

Rooted in the belief that listening is among the most transformative tools in healthcare, the model calls for each member of the interdisciplinary team to focus on understanding the patient’s greatest concern within their domain and address it in a way that supports the individual’s unique quality-of-life goals. These conversations allow team members a deeper understanding of the patient’s needs, priorities, and religious and cultural preferences—allowing them to tailor care accordingly.

Connecting the dots to address social and emotional barriers

This emphasis on whole-person care includes a focus on addressing the social determinants of health: another opportunity identified in the NQF report.

Sadly, social factors such as poverty, mobility challenges, and caregiver burnout often worsen as an individual nears the end of life. To achieve true person-centered care, providers must not only address the patient’s physical, social, or emotional deficit, but also connect it to their underlying needs.

For example, instead of simply identifying gaps in a person’s ability to manage activities of daily living, such as the ability to ambulate, our person-centered model of care examines the factors driving the need for mobility—such as the need to access food or medication. By hardwiring a framework to identify these needs and connect patients with the right social supports, the team can design a comprehensive care plan that considers the whole person.

Measuring quality of life

These and other steps outlined in the NQF report are critical to improving end-of-life care. Yet, true transformation will not happen without improved quality measures that align with the focus on safe, appropriate, and person-centered care.

While improved, existing measures still do not reflect the importance of educating and engaging the patient and family, they also do not reflect the need to provide coordinated care tailored to the patient’s goals and preferences.

To address this gap, we must embrace new performance metrics. Since implementing our care delivery model, we have created new measures to track performance across the domains of care, including pain intervention response, medication reconciliation, patient safety, and quality of life.

While we continue to refine our efforts to standardize the delivery of safe, efficient, and person-centered care to those facing serious illness or the end of life, more must be done to scale similar efforts across the healthcare system. Until we have highly actionable and easily replicable models of care—and corresponding quality measures—that address the physical, emotional, social, and spiritual needs of patients and families, the vision of providing every person with consistent and predictable high-quality care will not be realized.

Kurt Merkelz, MD, is senior vice president and chief medical officer of Compassus, a provider of home health, palliative, and hospice care services across 29 states.

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