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Hastings Center News

Hastings Center President Calls for “Moral Leadership” to Improve End-of-Life Care

Are you, as caregivers in a twenty-first century health system, helping your patients and families to make fully informed decisions about the treatments they want and that are likely to be in their best interest?  Or, like so many clinicians working in modern health care systems today, are your patients simply being conveyed along a pathway of defaults, which inexorably leads them to more and more procedures without the benefit of real discussion?  These were among the challenges Hastings Center President Mildred Z. Solomon posed in two recent named lectures.

Solomon delivered the 23rd annual Joseph N. Muschel Medical House Staff Award Lecture at Medicine Grand Rounds at Columbia University on May 16 and the Annual Wilhelm S. Albrink Lecture in Bioethics at West Virginia University on May 18.  Both talks called on clinicians, hospital leaders, and bioethicists to broaden the usual ethical framework beyond “thin” notions of autonomy to a more robust relational ethics, that would build new systems, better capable of ensuring that frail older Americans and their caregivers get the support they need.

As she put it: “In many cases, patients are not actually making decisions but rather simply yielding to what seems expected of them. For example, dialysis is frequently offered to patients in ways that they do not understand, so while patients may accept the procedure, they are not always giving truly informed consent.”  Inside the hospital, she encouraged clinicians to use the new Centers for Medicare and Medicaid Services codes that allow them to charge for goals-of-care conversations and, most importantly, to designate someone responsible on each unit for ensuring that robust conversations take place.

To ensure a helpful conversation, clinicians should feel free to offer their recommendations and explain why they think one route might provide a better experience for the patient than another.  “Too often, clinicians act as if respect for autonomy equates with holding back on their own views; but when we just turn to patients and ask, ‘what do you want?’ without context, well, that’s a form of abandonment,” she said. “Offering a recommendation is not a violation of patient autonomy.”

While a patient’s autonomy is an important guiding principle in making care decisions, Solomon called attention to ways in which a near-total emphasis on autonomy has fallen short in achieving the kind of care people want in the final phase of life.  “We should be honest about the problems associated with our over-reliance on autonomy and our fascination with rights, absent equal attention to patient and family needs,” said Solomon.

Speaking of end-of-life care and population aging, she told the audiences: “Redesigning our systems of health care delivery is one of the most important challenges of our time and will take significant moral leadership. But even that is not enough:  beyond changes within care delivery settings, we also need to redesign our communities – so that housing, transportation and social supports are there for the increasing number of Americans living longer with frailty and dementia.”

Drawing in part on The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life: Revised and Expanded Second Edition, Solomon highlighted the need for systemic reform in care delivery, from an emphasis on bedside decision-making where bioethics has spent most of its attention, to the broader goal of meeting social and logistic needs of patients and their caregivers at home and in the community. A wider focus could guide social support policies as well as medical plans, including in-home care plans and strategies to reduce the social isolation of patients facing frailty and dementia.

She offered several practical recommendations, including enhanced care coordination by interdisciplinary teams and payment reform.  “Current financial incentives are terribly skewed,” she said. “Medicare will pay for all manner of high technology, but none of the low-tech-high-touch supports people need so desperately.”  Even if it’s unrealistic right now to expect payment reform at the national level, Solomon urged health systems to take on the challenge themselves.  Moving away from fee-for-service to accountable care organizations will give many of you the opportunity to redesign care.”  She cautioned, however: “These new arrangements are going to be disruptive — there will be both financial winners and losers. Our society will need morally courageous hospital trustees, health care executives, payers, policymakers, clinicians, community leaders, patient advocates and families, willing to build new systems of medical care and social support that will challenge the status quo.”

Some of the themes from the lectures grew out of Hastings Center projects, including The Last Stage of Life, a planning project funded by the Robert Wilson Trust, and will be referenced in an upcoming special report in the Hastings Center Report on what a just society owes its aging population.