Sick To Death > Chapter 5 > Building the Care System to Count On
Very sick people should not have to be afraid of their care system. They and their families need care they can count on, with the services that matter to them readily available. Since patients coming to the end of life ordinarily get care in various settings and from various providers - home care, doctor's office, hospice, hospital - the level of performance in each setting and from each provider must be high, and transfers among settings must be smooth. Only then can clinicians make promises of reliable services that cover all of the time from the onset of serious illness to the end of life. Meeting the important needs of patients and families when people face eventually fatal chronic conditions means
One way to envision the goal in care for the last part of life is to seek a set of care arrangements in which sickpeople do not need to be "lucky" in order to have the care and support they need, at the right time, every time. Within such a reliable system, patients, families, and loved ones can concentrate on living fully in the time left.
For Americans for Better Care of the Dying, an education and advocacy organization focused on the last part of life (www.abcd-caring.org), I articulated a vision of good care, embodied in a set of promises that doctors and nurses should be able to make, from early in the course of serious illness through to death.
The key idea is not just a list of tasks enumerating what a care system should endeavor to deliver but insistence that delivery has to be reliable. Providers serving patients who live with fatal chronic illness today cannot promise these performance characteristics to patients, certainly not from the onset of illness all the way through to the end of life. Hospice programs can often deliver on these promises for the short time that patients are with them, and many "gem" programs manage to do a good job for a small number of patients or in a certain setting of care (see the examples in chapter 3). Patients might feel they're on a roulette wheel: things may workout fairly well or they may not, and it's nearly impossible to improve the odds.
These seven promises are substantially the same as a set of precepts of palliative care published by Last Acts (www.lastacts.org) and a set of guidelines for care at the end of life (American Geriatrics Society 1997). A care system that could make these seven promises would need to have these basic characteristics of clinical quality:
These are not terribly costly interventions, though making them reliable will entail some added costs. Perhaps we could learn to forego some costly treatments that carry only small benefits, which probably would allow good care to be no more costly than current dysfunctional patterns of care. Whatever balance of costs and painful decisions about costs that society achieves, it is certainly the case that excellent care has to be sustainable: that is, within society's ability to generate funds, human resources, and living arrangements.
Furthermore, the style and method for high-quality care systems will have to emphasize professionalism, caring, efficiency, and an ongoing search for new insights and patterns that ensure continued improvement. Certainly, we do not know enough today to design the optimally achievable care system for twenty years from now. Only by vigorously seeking to learn what we need to learn can we hope to generate reliable care delivery arrangements in the twenty years before the baby boomers start to need care for serious chronic illness.
One area of special focus must be the development of supportive arrangements for paid and unpaid caregivers. Improvements will depend upon these human resources, so optimal care arrangements must include some combination of improved benefits, pay, respect, career ladders, and emotional support for caregivers. At least through 2030, the country will have to keep developing additional capacity to serve the onslaught of boomers coming to their last years of life.
Reliable care at an affordable price for people living with fatal chronic illness is possible, but to achieve it we need insight, innovation, and commitment. Reform would build on Medicare, which enjoys wide support as a social commitment to the elderly, and on other programs that use public funds to provide broad access to medical services. We know how to arrange good care, and many of the improved approaches are either cost-neutral or of modest cost. Furthermore, rather than meekly accepting the system's shortcomings, the baby-boom generation is likely - first as caregivers, and then as aging and dying people - to rally political support for more reliable care.