Getting the Right End-of-life Care: Coming to Terms with the Realities of Advanced Disease and Mortality


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The contributors’ goal: A true transformation [of health care] so that all Americans with advanced illness, especially the sickest and most vulnerable, will receive comprehensive, high-quality care that is consistent with their goals and values and that honors their dignity.

“Dying is at once a fact of life and a profound mystery.” That was the opening sentence of a 1997 Institute of Medicine report, Approaching Death: Improving Care at the End of Life, a much-needed jump-start in the national dialogue over identifying the barriers that impede the delivery of high-quality, compassionate care for patients with advanced illness. In the ensuing years, the clinical term “quality of life” has become a standard measure of cancer care; however, “quality of death” remains a more challenged concept. That, too, is changing, led by progressive sectors of the oncology community, especially those in palliative care.

Instructive Blueprint

A recently published book, Having Your Own Say: Getting the Right Care When It Matters Most, elucidates the hard and necessary work ahead to achieve the contributors’ collective goal: “A true transformation [of health care] so that all Americans with advanced illness, especially the sickest and most vulnerable, will receive comprehensive, high-quality care that is consistent with their goals and values and that honors their dignity.”

Edited by Bernard J. Hammes, PhD, Gunderson Health System, Having Your Own Say—a collection of expert-authored articles, instructive essays, and first-person accounts—is an instructive blueprint on delivering sensible, compassionate end-of-life care that should be embraced by health-care professionals and policymakers in Washington. On top of his editor’s duties, Dr. Hammes also contributed chapter 2, “Creating Person-Centered Care When it Matters Most: Lessons Learned at Gunderson Health System.”

Overarching Message

“Let’s begin with a story … this story is a moral drama that has featured or will likely feature each of us.” So Dr. Hammes opens his chapter, which drills to the heart of the book’s overarching message about the invaluable benefits of timely self-determination regarding one’s health care as life nears its end. Blending compassion and objectivity, he articulates the societal worth of fairly new laws that permit adults to sign documents specifying their preferences for future health-care decisions. These documents typically fall into two categories: living wills and powers of attorney for health care.

As Dr. Hammes points out, both documents, which fall into the advance directives category, are important tools for documentation, but by themselves do not answer the moral and human question faced by caregivers: “How should I take care of this person in these circumstances?” He answers that universally imposing question by introducing the reader to La Crosse, Wisconsin, a community that has developed its “own comprehensive model to help individuals and families create personal health plans for these morally complex health issues.”

The La Crosse experience is based largely on reshaping societal awareness on mortality issues; honest, timely dialogue about end-of-life issues is the foundation of the La Crosse approach. Dr. Hammes refers to the person-centered care model in La Crosse as one that can “not only tailor medical treatments to the person but also avoid unnecessary suffering for that person.” Subsequent chapters make a convincing case that improving the way we care for patients with advanced illness is an essential improvement in our overall health-care system that we cannot allow divisive politics and misperceptions to derail.

Coordinated Windows

This well-organized, 16-chapter book never suffers from redundancy. Each chapter serves as a self-contained booklet, giving the reader a set of coordinated windows into successful innovative programs that have led to better, more cost-effective care. For instance, chapter 6, “The Value of Palliative Care to Patients and Family Outcomes,” by Drs. R. Sean Morrison and Diane E. Meier, elucidates the essential elements of palliative care and explains how integrating this approach into guideline-driven care could transform our health-care system.

Drs. Morrison and Meier—both nationally regarded palliative care experts—also contribute chapter 15, “Better Care, Higher Quality, and Lower Costs for the Seriously Ill.” This selection is a nuts-and-bolts mini-primer on value, which in the vernacular of health care is defined as the ratio of quality to cost. Citing data from multiple studies, the authors underscore a fundamental principle that is often obscured in today’s contentious health-care debate by politically driven myths such as “death panels”: “Value can be enhanced by improving quality, by reducing costs, or—preferably, as in the case of palliative care—both.” Moreover, backed by a substantial bank of data, Drs. Morrison and Meier come to a telling conclusion: “The only current intervention that has shown empirically to directly enhance the health-care value equation is palliative care.”

The ultimate success of Having Your Own Say rests chiefly on the clarity it adds to the complex issue of dealing with advanced illness that foreshadows death. Tom Koutsoumpas, Executive Director of the Mintz Levin Center for Health Law and Policy, and Bill Novellli, Professor, McDonough School of Business at Georgetown University, opened the book’s forward with an elegantly frank statement, which sets the table for the ensuing chapters: “Nearly everyone has a personal story about a loved one with an advanced illness. Many of these stories are about the frustrations of dealing with a health-care system that truly doesn’t serve our needs.”

This is not a hyperbolic attack on our health-care system; it is simply stating the reality of a massive structure that has not come to full terms with the uncomfortable realities of advanced disease and mortality. Recognizing the system’s weaknesses, as the authors point out throughout the book, is an essential component in creating new models that deliver better care in this most difficult of clinical scenarios.

Actionable Solutions

What elevates Having Your Own Say above other books on this subject is that the contributors weave a human story, a medical journey, sometimes heart-wrenching, that ends with actionable solutions to the problems our system faces. If the editor of this fine and valuable book is up to another challenge, it might be worthwhile to distill the essence of Having Your Own Say into a handout booklet for policymakers on the Hill. ■


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