Sick To Death > Chapter 5 > Methods to Achieve 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.

Methods to Achieve Reform

Evidence from other areas of health care suggests that sweeping change is possible if we give high enough priority to the problem at hand. For example, up to a few decades ago, childbirth practices were decidedly inadequate, and new mothers used to be "lucky" if their experience with childbirth was relatively comfortable and free of complications. Now childbirth has become routinely safer, and parents are quite involved in planning for labor and delivery. Just as new mothers who experienced comfortable, complication-free births were considered "lucky" in years past, Americans feel "lucky" today if a loved one has a relatively comfortable experience with a serious chronic disease and ensuing death. Also, just as childbirth protocols came to value human aspects of the childbirth experience, so might protocols and practices evolve to guide care for serious chronic illness at the end of life. Of course, each situation presents its own unique challenges and opportunities, and the parallel with obstetrics breaks down at various points. Nevertheless, study of the methods of change used in reforming other social practices and health care might well provide insights into how to engineer reforms for this population.

Certainly, no method is more important than innovation with evaluation (Kendall et al. 2003). We need a few years of trying out promising ideas and learning which ones actually serve us well. A recent publication by an Institute of Medicine committee recommends various demonstration projects for Medicare (Institute of Medicine 2003). The committee asks for one year of planning, three years of implementation, and an ensuing time for review and analysis. Though its approach gives reasonably reliable evaluation of the projects at issue, the method does not reflect their urgency. And more effective and dynamic strategies are readily available. Rather than test a settled intervention for three years, a steering committee could use ongoing feedback to reshape the intervention every few months. This approach, called rapid-cycle quality improvement, tests multiple elements in quick succession. It makes a remarkable engine of improvement for care in the last part of life (www.ihi.org; Lynn, Schuster, and Kabcenell 2000).

An old aphorism among reformers is that "you can't improve what you don't measure." Certainly, most successful projects to improve the public's health need to monitor trends, using population-based measurement. Yet we have no way to monitor what happens in populations at the end of life. Quite simply, no one knows the rates of serious pain, family bankruptcy, or advance care planning. No political leader can know whether things are improving or falling apart in his or her jurisdiction. But a few projects begin to shed light on the issues. For example, a research team in Oregon is tallying the experience of decedents through interviews with family members (Oregon Health Sciences University 2002). Last Acts recently published a report card on performance state by state (Last Acts 2002). Working out an epidemiology that would allow comparisons between locales and monitoring of trends would create a powerful tool to motivate the will for change and guide implementation (Singer and Wolfson 2003).

Living for a long time with fatal illness is still a new cultural phenomenon, and we have much to learn about how to make this time of life comfortable and rewarding for patients and families. Fortunately, good care does not have to await development of new drugs or devices. Medicine and nursing possess the tools to ensure comfort and dignity throughout the course of serious disease and dying, but their use is not efficiently built into care delivery. Reformers need the evidence from innovations to guide better strategies for care-system engineering. The following questions are especially relevant to research, continuous quality improvement, and reflection:

To answer these questions, we need to synthesize all our available data and experience into useful formats and action agendas. This work requires substantial investment, emotionally and financially, in a multiyear plan to build the knowledge and insight for a trustworthy care system.

Americans continue to wrestle with how to talk about and even how to imagine many aspects of life with long-term and severe disease, disability, and suffering. Few have yet come to terms with the increasingly likely prospect of long-term disability in the years near death; of coexisting and competing causes of death and suffering, which make eradication of a particular condition of only limited importance; and of prognosis as an inescapably ambiguous characteristic until very late in the course of fatal illness. Presumably, we can accelerate our awareness of people's needs toward the end of life and the ability of the community to meet those needs. We need to build a cultural store of traditions, stories, rituals, and meanings about the last phase of life; and we need to build that part of our culture as quickly as possible.

Leaders of a variety of allied fields - aging, health care, disability rights, public health, and medicine, for example - will need to find the mental models and the language that gradually reflect and sometimes create more accurate and useful ways to frame the issues. Rather than aiming to prevent death in the elderly, we may acknowledge that we will try to delay it. In place of a single cause of death, we will acknowledge multiple contributing causes; and in place of using the category of "dying," we will come to call it the last chapter or phase of life.

Working with the perspective of a span of survival might be more productive than working with age per se. The way to achieve reforms in culture and language may depend heavily on changes in news media and popular entertainment. The Last Acts Writers Project, which provides story ideas and vignettes to film and television screenwriters, thereby encourages them to include more realistic portrayals of living with serious illness and the end of life.

What should count as good - or as outrageous - quality of care for those with severe disabilities and suffering with eventually fatal chronic illness? Where are the standards of care for these populations? Just as national groups insist that good care include certain drugs after heart attacks and certain immunizations for adults, strong standards should direct the basics in end-of-life care. And as we once learned to reject racial segregation and to address domestic abuse, we need to become intolerant of the persistence of demonstrably inadequate care for those living with fatal chronic illness. Professionals and organizations should endorse standards of care like those listed here, even though only a minority of patients get this care at this time:

An example of how errors in routine practice came to be viewed as just that - errors - comes from Oregon, which has enjoyed remarkable success with its Physician Orders for Life-Sustaining Treatment (Lynn, Schuster, and Kabcenell 2000; Oregon Health Sciences University 2002; Dunn et al. 1996). In one study, 180 nursing-home patients who had a POLST and who were later admitted to hospitals did not receive CPR and were not put on ventilators (Tolle et al. 1998). This excellent system did not work in the case of an elderly woman admitted to an Oregon Health Sciences University (OHSU) hospital. Although she had a POLST on record at the nursing home where she was a resident, it did not come with her when she came to the hospital in an emergency. Consequently, when the patient collapsed, she was put on a ventilator and received the usual array of life support. She died after a stay in the intensive- care unit. However, not having the POLST upset hospital staff, who viewed this case as a serious medical error. Staff filed reports, questioned participants, and assessed root causes. As a result, administrators used the case to examine a problem in the system and design ways to prevent it from happening again (Americans for Better Care of the Dying 1999).

That sort of standard setting around the needs and priorities of this population will have to happen many times, as the public and the professionals come to see what matters and how to achieve it reliably. So I do believe that the care system at work in the United States within twenty years will look very different from today's dominant models, but I also believe that we will get to that future with a long series of what seem to be small changes. If reforms draw on innovations and evidence and are backed by strong political forces, we can make improvements quickly.

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