Exploring opportunities to provide high-quality, community-based care for high-need patients

In the U.S. today, there are more than six million people aged 65 years or older living with multiple health conditions, such as diabetes, heart disease and chronic obstructive pulmonary disease, and more than five million who suffer from dementia or Alzheimer's disease. Many of these “high-need” individuals are also limited in their ability to perform everyday tasks, which can include bathing, dressing and even walking. This population is also living longer. The last phase of life can be several years, with health on a slower, more extended, decline.

In 2016, we embarked on a three-year exploration to improve the quality of care for people living with serious illness – individuals with multiple, chronic conditions and a limited ability to perform everyday tasks. We identified two opportunities and focused funding efforts on: strengthening workforce training and support and building effective quality measurement and accountability programs for community-based services.

For efforts to strengthen the workforce (both paid and unpaid providers of health services), we placed emphasis on training and support for family caregivers, who provide most of the daily care and who are not paid for this work, and helped clinicians strengthen their communications skills. High-quality communication between physicians and patients with serious illness that addresses the patient’s health status and related goals can lead to measurably better quality of care. Research shows that preparation for medical decision-making that factors in patients’ values, preferences and health goals – often referred to as advance care planning – leads to better care.

From an accountability standpoint, we seized an opportunity to fill a void – the absence of a robust consumer-protection system for community-based serious illness care programs. A path forward for building an accountability system can be read in a report released November 2017 titled “Quality Measurement and Accountability for Community-Based Serious Illness Care.” Work in this area continues through the Center to Advance Palliative Care and its Serious Illness Quality Alignment Hub.

To improve the quality of serious illness programs, we worked with the National Academy of Medicine on a series of workshops – the “Roundtable on Quality of Care for People with Serious Illness” – for participants to collaborate and learn from others interested in a shared vision of high-quality, community-based care for people with serious illness.

With the completion of our work in 2019, we look forward to continuing to share what we have learned along the way.

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