Sick To Death > Introduction

Sick To Death book cover This extract from the online edition of Sick to Death and Not Going to Take It Anymore! is used with permission.

Sick To Death : Introduction

The life stories of most Americans nowadays are long and remarkably free from serious disability or disease. When serious disability, progressive chronic illness, or frailty arrives, it is usually only in the last chapters of our life stories. Growing old before becoming seriously ill and dying is a remarkable accomplishment. Just a century ago, serious illnesses and disabilities were common at every age, and dying was usually quick.

Yet long life poses its own challenges. Health care and community services simply do not meet the needs of the large number of people facing a prolonged period of progressive illness and disability before death. American society doesn't even have the language with which to discuss this previously uncommon phase of life. The subject gets little coverage in the news media and little attention in popular culture, leaving us without shared stories to make sense of our situation. Dysfunctions that result from outdated health-care and social arrangements cause fear and suffering for most of us, both when we try to help a family member or friend with a fatal illness and when we ourselves are ill. Sometimes a person dies peaceably and gracefully at the end of a long life. Everyone concerned considers this person to have been "lucky" - precisely because all of us know that the last part of life so often includes untreated pain, financial disaster, loss of control, frustrating struggles with disabilities, and even a generally miserable and purposeless last chapter.

It doesn't have to be this way. Most people can live well with serious, eventually fatal chronic illnesses, whether for a few months or for many years. When supportive services ensure that very sick and disabled people coming to the end of life can count on being comfortable and comforted, we ordinarily have highly meaningful experiences in the time that is left.

Why can't we all have a good ending? Why can't we count on good care when we need it most? Why do we tolerate a health-care system that leaves people in pain, confused, bankrupted, demeaned, and frightened? We could do much better - and we should. The reforms that we need are within our grasp. What we need most is a shared vision of good care, innovative approaches for achieving this vision, and the will to make the changes happen.

For twenty-five years now, I have struggled to find care arrangements that would let ordinary Americans live through their last years with comfort, dignity, and human meaningfulness. This quest has taken various forms: I have served a few thousand dying people as their personal physician; shared in the work of dedicated and skilled teams caring for seriously ill persons at home and in nursing homes; encouraged the spread of hospice services to every corner of the nation; written legal briefs to courts that were confronting difficult cases; participated in substantial research projects; led quality improvement in scores of care-provider organizations; and written guidance books for patients and families. These multiple roles have taught me much about the complexity of the current health-care system and the urgency of change. They also have let me learn from a variety of skilled and thoughtful colleagues who share the goals of service to those living with serious illness. Many of my insights here reflect the growing base of knowledge already garnered and the creative initiatives already undertaken. These efforts have had substantial effect; but I am now convinced that we need to reform public policy and reshape social arrangements in order to enjoy reliably good care in the last years of life.

This book aims to provide the essentials for those reforms - facts, perspectives, goals, and strategies. This is an owner's manual for the health- care system, for all of us who expect to live long and die well. As citizens, we own the health-care system that we will have to use when we are sick and dying, especially since it mostly relies on public funds. When "care" is profoundly unreliable, as it is now, we have the right and the obligation to fix it. A dedicated effort will teach us the rest of what we need to know, and successful reforms could quickly make this book as outdated as our care system is now. All of us face the prospect of serious chronic illness in our last years, and all of us have a stake in engineering reform.

What will it take?

That is the outline of this book: facts, concepts, examples, strategies, and implementation. What I cannot supply is the energy and commitment to make change happen, because that requires you, putting your efforts into this cause. We can do it. We can have a reliable care system that lets us live meaningfully and comfortably despite serious illness in our last years. Nothing is in the way, except habit and inattention. Surely, as we anticipate the harsh experience of caring for a loved one in a dysfunctional system, or of scraping through the last part of our own lives with inept services, we can overcome the inertia of accepting current arrangements. We all have to live out our days using the care system that we establish. We will deserve the suffering we get, if we leave the situation unchanged.

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