Sick To Death > Chapter 5 > Forging the Will to Make Improvements Happen

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.

Forging the Will to Make Improvements Happen

For nearly every provider, payer, and patient, doing whatever was done yesterday is easier than doing something new, even if people expect the innovation to be an improvement. The strongest threat to substantial reform, over and over, is the persistent acceptability of the status quo. These are our "usual suspects" of habit, inertia, and inattention. Change is not likely without leaders able to articulate the need for a better approach, to envision what can be accomplished, and to encourage intolerance of current arrangements. Overcoming inertia requires a sense of urgency, outrage, or commitment.

A vision of better care comprises a reliable set of services that allow people in the last phase of life to live comfortably and meaningfully and give their families confidence about what is being done. Having care arrangements that enable patients to trust that the right services will be available at the right time is the important hallmark. Clinicians must be able to make those seven promises listed at the beginning of this chapter. The care system must demonstrably create desirable experiences such as comfort, confidence, life closure, and caregiver support and do this at a price that the community can afford. A final critical element is that the care arrangements must continue to adapt and evolve through ongoing learning and reassessment.

What might generate the will to achieve that vision? Here are some promising approaches:

Highly visible people must articulate the will to change in order for change to be tolerated. Dr. Don Berwick gave a galvanizing talk in 1999 to the American College of Physicians–American Society of Internal Medicine, calling for these professionals to adopt this issue and provide leadership (Berwick 1999), but the follow-through foundered. Elected and appointed federal officials, including the president, the surgeon general, and the secretary of Health and Human Services, have not embraced this issue, either in the current administration or in previous ones. However, demographics ensure that the time is at hand. The announcement by the American Association of Retired Persons of its ten-year commitment to long-term care, chronic disease care, and end-of-life care may well be the sort of endeavor that builds the framework of reform. In December 2003, the Agency for Healthcare Research and Quality published the first congressionally mandated National Healthcare Quality Report, listing the four components of patient needs as staying healthy, getting better, living with illness or disability, and coping with the end of life (Agency for Healthcare Research and Quality 2003, 12). The obvious dearth of available information to include in the report on care for serious illness and disability and for the end of life might serve to goad funders and researchers to attend to the deficiencies.

Finally, of course, someone must actually do the work of building the better care system. As the knowledge base deepens and the will to move forward coalesces, we can expect at least incremental changes. Sometimes change will be sweeping, but often reforms can survive the political process only if they are perceived as small adjustments. Change always engenders opposition, at least from those comfortable with the current situation. As providers come to understand that building a system for fatal chronic illness probably means a much smaller proportion of the available income for some traditional anchors of health care, and much less power as well, they might well oppose changes. Likewise, some newer providers, such as PACE providers and palliative-care services, who are in tenuous positions because they are new, might well argue for perpetuation of their agenda even when a better option has already become available. The saving grace for change in this field might again be the oncoming remarkable increase in the population. For example, even if those facing fatal chronic illness used emergency rooms half as much, doubling the population would keep their rate of use constant.

This agenda is both urgent and incomplete. Urgency arises from the mandate created by avoidable current suffering and the prospect of worsening performance of the care system as the population ages. Trustworthy practices that are affordable, while achieving comfortable and meaningful living in the last years of life, would be a worthy promise to current citizens and a worthy legacy for the future.

Our agenda is yet incomplete. The data are thin, the mental models are new and incompletely tested, and the priorities and action steps will require ongoing learning to reshape them. Much is not yet known or understood. Perhaps the most important element in reform is to develop ways to garner insight and forge consensus that can fuel the will to make changes happen. Since interpreting facts and generating consensus require updating with new insights and emerging opportunities, the social structures that can do this work need to be enduring and ongoing. We also need many advocates and activists, and we need to have them push a shared agenda (Casarett, Karlawish, and Byock 2002).

Change is already seriously overdue. We have only two decades before the numbers with fatal chronic conditions will double. If we continue to do no better than we do now, the suffering will be overwhelming and the costs will be crippling. If we learn to do better and to deploy our knowledge effectively, we could instead live out our last years comfortably and meaningfully, with a care system that is sustainable, cost-effective, and politically popular.

Significant and enduring improvement in care for people with serious chronic illness requires leadership, analysis, and much hard work. Individuals and organizations must initiate efforts to learn how to serve those coming to the end of life and to translate those lessons into policy. All of us have a stake in this - all of us will reap the benefits if we learn to do it right; and all of us will endure unwarranted misery if we leave current shortcomings in place.

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