Improving Care for the End of Life, Online Edition The Palliative Care Policy Center

Sourcebook : Improving Care for the End of Life : 1.0 Continuous Quality Improvement for Better End-of-Life Care

We are what we repeatedly do. Excellence, then, is not an act, but a habit.
- Aristotle

Introduction

Our great-grandparents could only have imagined the "problems" improved public health and fantastic medical technology have created in our lives. To our predecessors, who had an average life expectancy of 46 years, our journey into old age would have seemed remarkable. And it is. Most of us will live well into our eighth decade, long enough to have had several careers, seen our children grown, and fulfilled many of our dreams and hopes. Yet this journey is not easy. The diseases that kill us - often, congestive heart failure, chronic obstructive pulmonary disease, cancer, stroke, or dementia - occasion a prolonged time of disability and illness before death. Living longer does not necessarily mean dying better; some of us suffer terribly while ill and dying, despite medication and services that can prevent and relieve many symptoms. When people are seriously ill and dying, concentrated health care that includes psychosocial services and support is often required. Patient and family needs may range from something as basic as understanding when to take medications, to something as complex as getting the right home wheelchair delivered and paid for.

Table 1.1 A Century of Change
19002000
Age at death46 years78 years
Leading causes of deathinfection
accident
childbirth
cancer
heart disease
stroke/dementia
Usual place of deathhomehospital
Most medical expensespaid by familypaid by Medicare
Disability before deathnot usually4 years, on average

Research shows that patients and families do not ordinarily receive compassionate, humane care at the end of life. What is easy and routine is what usually happens - and in most health care settings, what happens is enough to heal the sick and cure the lame. Yet it does not comfort the dying.

It is not that health care professionals and society set out to create a terrible system, aiming to torment patients and families. Instead, the system is what developed while we tended to other urgent issues about cure and treatment. The health care system is tailored to handle emergencies and injuries, diagnostic tests, and surgery; but it is not designed to accommodate long periods of illness, to meet the needs of very frail elderly patients, or to address the diverse needs that dying patients have. The health care system is not designed to pay for or coordinate comprehensive medical and social services over the course of several years. Too many dying patients live and die in pain and experience distressing or uncomfortable symptoms. That such symptoms persist in an era that has seen the advent of so many effective treatments is an indictment of the status quo.

Innovators Need to Know

  • Better end-of-life care demands a profound change in how we finance, design, and deliver health care for people with chronic and life-threatening illnesses.
  • Categorizing the "dying" and the "living" prevents us from developing adequate systems of care for seriously ill patients.
  • Rapid-cycle changes based on the Plan-Do-Study-Act quality improvement model can create real improvement in most organizations in less than a year.
  • Many health care organizations have used the Plan-Do-Study-Act model to make significant strides in how they care for seriously ill patients.

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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.

For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].

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