Sick To Death > Chapter 2 > Summary of Ideas to Shape Reform

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.

Summary of Ideas to Shape Reform

We are all still learning how to respond to our new way of living at the end of life. The care system shaped in the decades after World War II aimed to provide surgeries and other dramatic interventions to most of the population, and it largely succeeds. Indeed, its success is part of what led to the burgeoning numbers of patients and families who face serious chronic disease in old age.

Our very language of care no longer fits the population and its needs. Policy makers ordinarily operate without the data they need to establish goals and priorities in this area or even to assess the effects of changes. Federal health agencies working amid competing priorities have little time for innovations in end-of-life care; indeed, our leaders of medicine and public health do not yet fully realize that health care concentrates more and more on supporting people with fatal chronic illness. Many patients and families still do not know what to ask of their health-care providers.

Even those seeking reform in this area are split among advocacy groups on aging, disability, hospice, nursing homes, rehabilitation, and individual diseases. Most services in the current health-care system are not tailored to meet the needs of individuals with serious, eventually fatal chronic illness. The gaps in our care system place these vulnerable patients at risk for unrelieved pain, indignity, and powerlessness and also burden and impoverish their families. Yet few organizations take up the cause.

Some better ideas have been emerging to remedy these deficiencies, including some important revisions of conventional wisdom. The changes in clinical, institutional, and financing policy this chapter has presented could be the foundations for a reliable care system that serves people living with serious chronic disease in the last phase of life.