Is end-of-life care threatened by today’s healthcare environment? – Part 5

FOUNDATION 4: Research

Scientific research on pain management and best practices of care for the dying are key components on which the hospice movement was built. Dr. Saunders combined scientific rigor with the wisdom gained at the bedside of her patients to constantly improve the quality, compassionate patient care she was dedicated to delivering.³⁴

While she read and shared research findings with other advocates to advance knowledge about end-of-life care, Dr. Saunders still valued the uniqueness of each organization that provided care for the dying. She resisted “franchising” her hospice concept because she believed that every community should create—with the help of her research—a specific plan to meet the needs of its own patients.³⁵

Her belief provides an important caveat for the current healthcare system: focus on community-based answers for the universal problem of caring for the dying. For example, the obstacles and potential solutions for providing hospice and palliative care in rural areas differ from those found in urban centers and therefore need to be addressed with different models of care and provider structure. Future research will have to take this fact into account.³⁶

In accord with this principle, the Dying in America report advocates “practice-based research networks”³⁷ to generate relevant and effective data for individual communities. This model links academic centers to primary care practices to allow for exchange of information and insights.

The report further highlights the need for additional research in several areas, including how to avoid unwanted care, how to improve quality of life, how to meet the needs of family caregivers, how to improve the accuracy and timing of prognosis, and how to develop evidence-based quality measures of end-of-life care.³⁸

The Aspen Institute similarly has called for developing quality metrics that can be used to evaluate all aspects of end-of- life care. It has emphasized the need to learn from “model communities” that are already meeting the needs of patients at the end of life.³⁹ Some of these model communities include Grand Junction, Colorado, where healthcare costs have been kept low without sacrificing quality;⁴⁰ La Crosse, Wisconsin, where 98 percent of residents have completed an advance directive;⁴¹ and the state of Minnesota, where referrals to hospice have tripled since 2000.⁴²

These recommended research projects have the potential to yield significant progress in end-of-life care by focusing on areas of greatest need for patients, families, providers, and communities. Studies show, however, that for-profit hospices are less likely than not-for-profits to participate in such research⁴³ as they emphasize profit-centered care.

SUMMARY: It is essential for the healthcare system to devote adequate time, energy and money to the scientific approach to care at the end of life to ensure that the quality, compassionate care for which hospice is treasured is made available to all individuals at the end of life.

Timely and appropriate research is essential for the ongoing evolution of hospice and palliative care and to meet the goal of helping every patient die with comfort and dignity.