Too many Americans at the end of life get no respect or dignity. Our health care institutions are configured to manage acute episodic illness or injury. But they are ill-equipped to care for the impending explosion in the number of aged baby boomers who will live longer, but with multiple chronic conditions that impose significant physical, emotional, spiritual and financial burdens.
There is an urgent need to reconfigure our health care delivery systems to address this reality. The first step is to acknowledge that there is a problem. The last time there was a concerted effort to address the issue on a national policy scale was three decades ago, culminating in the Medicare Hospice Benefit.
Although Medicare-covered hospice care has grown considerably over time, two major factors retard its effectiveness. First, patients who enter hospice care must forgo potentially life-prolonging therapies. That forces an untenable choice, and results in very late admissions to hospice. Second, the practice of medicine has evolved since the benefit's eligibility criteria were established, requiring a physician to certify that a Medicare patient has a prognosis of six months or less.
But prognostic certainty is becoming less certain due to disease management strategies and innovations and varying financial means and social circumstances. Thus, life expectancy is not readily predictable for a person diagnosed with common life-limiting conditions such as cancer, heart failure or Alzheimer's disease. With the same diagnosis, one person may live three months; another may live a year and three months, or longer.
In most circumstances, much can be done to prolong and improve the quality of life that was not fathomable 30 years ago. But the hospice benefit's eligibility rules and payment policies have not evolved in accord with clinical reality. While intended to reduce fraud and abuse, the highly punitive payment oversight process has backfired, leading to more costly and poorer quality of care, by maintaining the crisis-hospitalization-discharge-crisis-rehospitalization cycle.
It also impels hospice programs to discharge patients who live too long. These patients commonly are without anyone to take over that care, creating a moral crisis for hospice professionals and no recourse for patients but a return to the hospital. Too often that brings more rapid decline and demise.
The numbers reveal how this approach has failed. Hospice patients use just 3 percent of the annual Medicare budget, whereas avoidable hospitalizations for the one of every 20 Medicare beneficiaries who die each year eat up 20 percent of the nation's annual Medicare budget.
While appropriate use of hospice care must be addressed, policy makers must also simultaneously attend to their constituents with advanced illness. The health and well-being of tens of millions of Americans depends upon establishing a care continuum from the time of diagnosis of a chronic disease, through its progression to advanced illness, and finally to a seamless transition to hospice, achieving the peace, dignity, and honor that every human life deserves.
A few weeks ago, an unprecedented meeting took place at the National Academy of Sciences, a major first step to reverse the low quality-high cost stalemate that afflicts our nation's sickest people. Under the auspices of the Coalition to Transform Advanced Care, leaders from across the health system, government agencies and political parties convened in an effort to shape the future of advanced illness care for all Americans.
U.S. senators from both parties participated, representing widely divergent political views, but a consensus arose: A strong care bridge is required, built upon the tenets of hospice but moving upstream from the last weeks to months of life, coordinating care throughout the last years of life.
The meeting was reminiscent of the bipartisan collaboration that fostered the Medicare hospice benefit. Today's situation is equally urgent, but there is nothing that cannot be fixed by coordinating advanced illness care and aligning payment structures with individual choices, goals and values.
That is the motivation behind this coalition. While more elegant models of care can and surely will be developed through that initiative, more immediate changes to the rules and regulations of the hospice benefit should also be pursued to assure a far more dignified earthly end for all our loved ones and, sooner or later, for ourselves.
Utah's congressional delegation is strongly encouraged to join in this effort to shape sensible policies that will serve this state's most venerable and vulnerable citizens as they face the last chapters of their lives.
Perry G. Fine is a physician and a professor of anesthesiology at the Pain Research Center in the University of Utah's School of Medicine, and immediate past president of the American Academy of Pain Medicine.