The nation needs the moral equivalent of a Manhattan Project on care of persons with serious and eventually fatal illness.
Just a few generations ago, residential facilities were mostly housing for the elderly poor--the county poorhouse--or treatment and housing for those with tuberculosis or serious mental disease. Nursing homes as we know them--treatment facilities for those with long-term serious illness--are a relatively recent phenomenon. Yet we have not made much sense of these facilities or of the phase of life that they serve. Medicare policy has tried to pay for nrsing facilities only when it was likely to avert hospitalization. Otherwise, nursing homes are simply outside the purview of Medicare.
Just twenty years ago, Medicare added coverage for hospice which, at that time, was a counter-cultural, anti-medicine movement. The Medicare hospice benefit made clear that this odd, interdisciplinary, supportive care benefit was to be available only to patients willing to sign away their more conventional benefits and was to be paid for only in special hospice programs that did nothing else.
These two programs, nursing homes serving the very sick and hospices serving the dying, are examples of health care arrangements that came about as patchwork responses to strongly felt social needs. This is an area in which the patches, rather than leaving a gap, actually overlap. Very sick people living in nursing homes (but not relying upon Medicare financing) can also have hospice if they otherwise qualify. Is this arrangement inequitable overpaying for services that the nursing home would have provided, or is it appropriate enhancement of services for an especially needy group?
Perhaps, the better question is this: How could our community best support people with serious and worsening illnesses, aiming for both quality and efficiency? The challenge is to implement an efficient, sustainable, and effective way to meet the needs of people with serious and eventually fatal illnesses.
As a person comes to terms with an illness that will be life-long, progressive, and part of the cause of death, priorities change. Many oversimplify the change by caricaturing it as a switch from cure to comfort. Much more often, the patient comes to recognize that, with real restoration of health beyond reach, he or she actually has always had many other concerns, not just one. Patients who live with serious illness all of their days, and eventually die from it, want many things: comfort, spiritual peace, protection from bankruptcy, plans for complications and progression, control, limitation of family burden, and so on. What characterizes them more than a simple "transition from cure to care" is an awakening to the many facets of human life that still matter, even though life will be constrained by illness and eventual death.
We must create a new set of categories, with language that is more useful. Rather than assuming that the defining element will be prognosticating survival time, we must build programs defined by severity of disability and expected progression of disease. The conceptual framework must match the physiology. Most of us will die shortly after an uncertain prognosis, of a complication that arises in the context of very limited reserve. Rather than the popular "dying" scenario of gracefully passing away on time, people may be better-served to be "ready to die" for a long time, all the while hoping to live even longer.
A potential overlap is not just a reason to build hospice use into nursing home care, though that may be a short-term response. Instead, the nation needs the moral equivalent of a Manhattan Project on care of persons with serious and eventually fatal illness. How is it that we can best serve our needs when we pass through this phase of life? What works to make life meaningful, what care system is sustainable, what language and categories work best? There is no place in the nation in which the usual patient can be promised good care from onset of serious and eventually fatal illness through to death. No model program has solved enough of the problems for its region to replicate and make permanent. This is the time for learning. If we share a commitment and get the work done, we can have a worthy care system within a decade. If we don't, the demographic bubble of the Baby Boomers as they come to the end of life will overwhelm an already inept system. We may then learn to ignore the suffering or to accelerate the dying. Surely it would be better to have ensured a meaningful life in a reliable and sustainable care system worthy of the name.
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