By: Stephanie Hedt
End-of-life care resurfaced in the news with Brittany Maynard, a 29-year-old woman with a terminal cancer diagnosis who publicly spoke out about her decision to end her life. Her desires as a patient were at odds with policy and provider practices. A recent Institute of Medicine (IOM) report titled “Dying in America: Improving Quality and Honoring Individual Preferences near the End of Life” has also shed light on the institutional framework of end-of-life care in our society.
Leonard D. Schaeffer, Schaeffer Center Advisory Board Chair and professor at the University of Southern California, was selected to be on the 21-member panel who wrote Dying in America. He discusses the immediacy and implications of the report-emphasizing the need for leadership- in an article in the American Journal of Managed Care.
In the article, Schaeffer states, “The IOM report captures well the interconnected challenges of a fragmented and inefficient healthcare system that leads seriously ill patients to transition frequently among different (and often inappropriate) care settings while families and caregivers deal with increasing responsibilities, costs, and emotional stress.”
Fragmentation and inefficiency are often found in the existing reimbursement policy. To this point, re-alignment of provider incentives with patient care plays an important role in the healthcare model. But, realigning reimbursement policies will not transform delivery of care to more appropriately respect patient preferences.
In a previous article by the New York Times, Schaeffer was noted to have said that “the committee’s most ‘radical conclusion’ was that there should be a more pronounced shift away from fee-for-service medicine, which promotes an emphasis on medical interventions in part by reimbursing doctors more for procedures than for talking with patients. ‘That’s all got to be changed,’ he said at a public briefing. ‘And if you can’t do it with current law, guess what? You’ve got to change the law.’”
The challenge of systemic change, especially considering the far reaching, complex, and personal facets of healthcare, requires leadership and direction. Schaeffer challenges providers and physicians to take ownership for developing standards and a culture of professionalism and norms that prioritizes reforms aimed at better meeting patients’ needs. The requisite for leadership by physicians and providers will lay the foundation for industry change: “… The combined weight of providers and payers (especially Medicare) can go far in influencing not just medical practice but cultural norms.” Included in his vision is integrating medical and social services for patients as well as a model that encourages shared decision making and standards for clinician-patient communication.
The difficulties of navigating the end-of-life care structure are personal for most of us; chances are you’ve had to watch or help your mother, grandfather, spouse or close friend consider the choices they have about their health care options. And chances are you found yourself frustrated by the complex pay system or discouraged by the care your family member received. The many stakeholders involved in the healthcare sector makes a paradigm shift seem almost impossible. But a restructuring of the end-of-life care system is also necessary. And that restructuring will take leadership from policymakers as well as practitioners.