Patient Centered Care and Human Mortality

The Urgency of Health System Reforms to Ensure Respect for Patients' Wishes and Accountability for Excellence In Care

Report and Recommendations of the Massachusetts Expert Panel on End-of-Life Care

In preparing this report, we found substantial, convincing and often deeply disturbing evidence that today's health care system is poorly designed to ensure that that basic principles are respected.

Those basic principles include:

1. The life of every person is of incalculable value, through the very end of life.
2. Medical decisions require the informed consent of the patient (or appropriate surrogate), and must always be anchored in the patient's own values and preferences.
3. While we all share in common the fact of our mortality, our individual values, priorities and preferences regarding death and dying are highly variable.
4. Care for patients with serious, advancing illness must therefore always be individualized, with patients supported in making well-informed choices from among the full range of options for their care—whether aggressively life-prolonging, or entirely comfort-focused, or some balance of the two.
5. An ethical health care system—one committed to universal patient-centered excellence—would ensure that patients receive the care they want and need near the end of life.

This report describes the many gaps in care we have identified, and recommends both immediate and long-term steps that must be taken to address them. For virtually every failing, proven examples of how to do better already exist. There is no justification for further delays in addressing these known shortcomings.
Once the steps we recommend are implemented, we are convinced that when each of us confronts a serious advancing illness, and one day the inevitable fact of our own mortality, we and our loved ones can know that we will be cared for with the respect, the compassion, and the excellence that we want, need, and deserve.
Achieving this will require our united efforts.