IV Systems Level Change: Charting a New Path for Dying, Death, and End-of-Life Care


Leah Rogne

This final section presents big-picture thinking from leading scholars of end-of-life (EOL) care about what is at stake and what it will take for us to transform how we deal with dying, death, and care. Writers, including a bioethicist/anthropologist, a political theorist, a sociologist, and a British National Health Service physician and leader in health care quality improvement, draw on their disciplinary knowledge and orientations to outline the historical, social, and ideological challenges we face and to call for largescale initiatives that could fundamentally shift our approach to death and care as health care professionals, as citizens, and as communities.

These leading-edge ideas reflect what appears to be a heightening energy around the need to confront—indeed, embrace—the enormity of the concept and reality of death in our health care system and in our society. It is emblematic of this new energy that Pulitzer prize-winning columnist Ellen Goodman has taken on as her retirement project, The Conversation Project, a cooperative effort including Goodman, the Institute for Healthcare Improvement, and other leading thinkers on health care and EOL (theconversationproject.org). Along with high-profile initiatives such as Goodman's, we see more and more health care professionals speaking out about the need to deal with issues of EOL care, and more and more local and state advance care planning (ACP) initiatives springing up
throughout the country. (See Chapter 22 in this volume for links to some of these initiatives.)

Chapters in this part are intended to inform, inspire, provoke, and challenge. In their chapter, Chapple and Pettus raise the bold question of whether the nation's survival depends on a new EOL conversation. They identify rescue as the dominant ideology and central paradigm guiding health care in the United States and point to tragic consequences that follow from the rescue paradigm, including a failure to recognize the importance of and reimburse adequately for prevention, rehabilitation, long-term care, mental health, or public health. Chapple and Pettus discuss the ways in which medical interventions are automatically applied—almost as a reflex—with an expectation of universal technological triumph over death. The authors point out that economic engines—the businesses of biomedical technology—fuel automatic application of complex biomedical interventions and that these businesses are a powerful driving force that benefits from, and perpetuates, rescue ideology. The authors convincingly argue instead for classical citizen virtues of civic friendship, honesty, and courage—virtues they identify as embodied in palliative care and ACP, and a positive counterpoint to ideology of rescue. Complexity and chaos theory are presented as more appropriate conceptualizations for EOL care, an approach that can encompass the uncertainty and surprises that can accompany dying and death.

In Chapter 20, British National Health Service physician and health care quality improvement champion Dr. Ben Lobo describes how organizations, health care systems, and societies perceive the value of providing high-quality service to people who are dying, and the opportunities to achieve the “Triple Aim” of improved health care outcomes and a positive experience at an affordable cost. He describes how quality improvement techniques may also help to achieve wider aspects of improving access and equity to services in a timely and effective way. At a patient level, the key to this is the need to make proactive case management for individuals and ACP the common approach. In the face of spiraling health care costs and higher expectations of patients and their families, Dr. Lobo discusses the challenge of engaging with patients and professionals to improve systems to identify and treat patients who will gain measureable benefit, prevent harm by not treating those who won't, and deliver a good and natural death. He discusses the role of effective leaders and great teams in health care improvement related to EOL care, and points to key elements important to implementing large-scale change in how we deal with dying and death. Finally, he asks leaders (public, professional, and political) how they will pass the “Moral Test” (Berwick, 2011 ) by doing the right thing, including challenging entrenched financial and other conflicting interests that stand in the way of positive change that can provide the opportunity for patients to have a good death. Finally, in Chapter 21 sociologist Allan Kellehear makes a passionate and compelling case for a public health approach to dealing with dying, death, loss, and care, arguing that no campaign to encourage ACP can succeed without a community-wide approach that normalizes death and dying and reduces societal fear of death. Kellehear urges for development of a comprehensive grassroots community development-focused public health plan that identifies discussing and planning for death, dying, loss, and care as a fundamental component of national policy. Sharing examples of community approaches undertaken in various countries to demystify and de-stigmatize conversations about dying, death, loss, and care, Kellehear outlines how such initiatives can address barriers to appropriate ACP and community-based EOL care, and go “straight to the heart” of what it truly means to commit ourselves as a society to human well-being in living and dying.

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