Sick To Death > Chapter 4 > Key Features of Change

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.

Key Features of Change

Fundamentally, major social change requires convergence of a number of forces that make the old way of doing things untenable while making a new order appealing or at least necessary. As we survey the structures for care of those with serious chronic illnesses, some of the facts seem especially salient. First, long-term disability and care needs in the years before dying do not generate large profits or attract substantial investments. Most of the patients are poor already or fear becoming poor. Most of the services involve low-paid labor, performed by those with limited political influence. The major sources of revenue for health-care providers are medications, devices, and hospitalizations, many of which are subject to inappropriate overuse now and are often hard to justify in a more ideal care delivery system (Fisher et al. 2003a; Fisher et al. 2003b). Most public policy makers and leaders - in academia or health systems, or in pharmaceuticals or technical applications - do not yet see reforms for serious chronic illness care as particularly attractive, or even important.

Second, while there have been a few important innovations (some characterized in chapter 3), they have been neither so widely attempted nor so well studied as to provide a sure guide. Beyond hospices, we mostly have small or thinly supported innovations. We have almost no study of the trade-offs among modes of care. The data on family care- giving, its effects, and alternatives are so fragmented as to be misleading. We urgently need innovations and the insights gained from testing them. We must begin to try new methods of care delivery, along with new mental models, ethics, politics, social roles, and figures of speech.

Third, the political weight for reforms cannot come just from the palliative-care providers; our numbers are too small and our influence is too limited. Indeed, the hard scramble for initial successes has fragmented the forces of hospice, long-term care, palliative care, PACE, and others, leaving them little tradition of aligning to pursue common goals.

As we look about for allies who might have the authority to garner political weight, we cannot count on those living now with serious and eventually fatal chronic illnesses in the last part of their lives, those most directly affected by the challenges of our care system. Overwhelming personal issues make it unlikely that they will seek attention within the political process. Even when they do raise their claims, they will not necessarily be alive through the next elections. Those who will face the issues in a few years, either when their parents become ill or when they do, are not yet engaged.

Yet all those currently struggling with the inadequacies of care in the last phase of life have families and other caregivers. That's where the political clout could lie - with all of the baby boomers who will first take care of their parents and then see their own suffering looming in the disarray and dysfunction of the care "system." The boomers have a long history of "having it their way" in politics. Perhaps, as caregivers, they could mobilize to fix the shortcomings before it becomes their turn to be the patients.

Reformers and allies should advocate for a reliable, sustainable approach to competent care for the large population of people seriously affected by eventually fatal chronic conditions. For this part of life, the care system should function differently. Often, everything that matters in the life left to such individuals hinges on the care arrangements being effective in providing supportive services. Symptom control, family support, continuity of a comprehensive care plan, and counseling for life closure will need to be reliably competent across a variety of settings. Hence, the metric by which to measure success will be more complicated than the traditional measure of quality - delay of death.

The delivery of care will have to change, along with its financing. Improved delivery arrangements and enhanced financing must mesh, since no clinical-care system lasts long if it cannot pay its bills. Conversely, more tailored financing cannot be much ahead of clinical reforms, because dysfunctional adaptations by providers arise quickly to respond to business opportunities and then defend against further reforms that would disadvantage that business plan.

More than four of every five Americans die while covered by Medicare - and many while also covered by Medicaid. The obvious "hammer" for the financing "nail" is the existing federal financing of care delivery, along with a number of derivative endeavors in regulation, human resource development, and law. The public truly owns this care system.

The clinical reforms needed to match improved financing can arise from a larger variety of sources. The anchor could be hospice programs, since hospice is available virtually everywhere in the country. However, advocates for primary care (internal medicine, family practice, and advanced practice nursing) and geriatric interdisciplinary teamwork may well step forward, aware that care of the very sick at home is powerfully satisfying. Nursing facilities will undoubtedly be the residence of many of us in our last months, so enhanced care in that setting will be important. The unusual combination of flexible financing and the needy populations served by PACE and the Veterans Health System may well make them ongoing loci of innovation and setting standards. In summary, the main financing reform has to be Medicare and Medicaid payment policy, but the improved clinical services can arise from various existing providers.

In addition to the obvious challenges of major Medicare and Medicaid reforms, a series of troubling quandaries at the boundary of ethics and policy cramps our efforts to leverage change: our inability to temper the use of high-cost medical treatments that have modest merit in extending life; our uncertainty as to appropriate care for persons with substantial dementia or other brain damage; and the threats of liability and human subjects protections that serve to retard innovation.