A new report by the Institute of Medicine has found that the quality of care patients wish to receive at the end of life rarely accords with the care they do receive. The report proposes a reformed model of end-of-life care that is more “person-centered, family-oriented, and evidence-based.”
When patients with terminal illnesses — neurologic or otherwise — come to the end of life, the care they receive should reflect their preferences, values, and goals, articulated over a series of thoughtful and comprehensive conversations held with their physicians, caregivers, and family members. But the quality of care patients wish to receive at the end of life is rarely commensurate with the care they do receive, a new report from the Institute of Medicine (IOM) found.
Authored by the IOM's 21-member Committee on Approaching Death: Addressing Key End of Life Issues, the 507-page report, titled “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life” and published Sept. 17 by The National Academies Press, called for sweeping changes to the way end-of-life care is taught, funded, and administered.
At the heart of the IOM report is the finding that patients at the end of life generally prefer, and are much better served by, treatment focused on managing pain, improving quality of life, and keeping the patient within their own home, as opposed to costly in-hospital interventions. This includes palliative and hospice care, which is not well understood by patients, or even by certain healthcare providers, the report noted.
The report sketches out a detailed picture of end-of-life care in the United States as it exists today, and advocates for more comprehensive standards governing discussions of end-of-life care in medical education, physician-patient interactions, and public awareness campaigns. It also emphasizes the need for Medicare and private insurers to fund end-of-life care in a way that incentivizes palliative and hospice care as opposed to acute in-hospital interventions.
Across five overarching recommendations, the report outlines a plan of action by which end-of-life care can become more “person-centered, family-oriented, and evidence-based” — care of the highest quality [See sidebar, “IOM Recommendations for End-of-Life Care”].
Neurologists and palliative care specialists not involved with the IOM report who spoke with Neurology Today felt it provided an accurate snapshot of the current state of end-of-life care in the US, and that it addressed some key challenges to providing high-quality care at the end of life. They also hoped the report would serve as a wake-up call for physicians, policymakers, and healthcare advocates, prompting a necessary overhaul to end-of-life care.
RECOMMENDATIONS
The IOM committee proposed a model for advance care planning that requires an ongoing dialogue between patient and physician — one that could begin as early as when a person turns 18 or receives their driver's license — about values and goals for care at the end of life. As a patient ages and their medical circumstances change, turning those values and goals into clear statements embodied in flexible written documents and medical orders is paramount, the authors wrote.
These advance care planning discussions should include not only the physician and the patient, but also any caregivers, social workers, nurses, family members, or other loved ones involved in caring for the patient, the report added. If a patient then becomes unable to express their care preferences at the end of life — as is often the case for those with neurodegenerative illnesses — a surrogate decision-maker will be better equipped to act as an informed advocate for the patient.
The report also advised that Medicare, as well as private insurers, should reimburse physicians for these end-of-life care conversations, and called for an end to the “perverse financial incentives” that encourage hospitals and clinicians to order life-saving care for severely old and infirm patients, who often prefer less invasive palliative care.
“While hospital and intensive care undoubtedly saves the lives of a great many otherwise healthy people, it is not necessarily useful — and is, on the contrary, harmful — for people with advanced and irreversible chronic illnesses,” the authors wrote. “Yet it is hospital care, not community- or home-based care, that consumes the largest share of Medicare spending for patients in the final phase of life.
“Incentives under fee-for-service Medicare result in more use of services (hospital days, intensive care, emergency care), more transitions among care settings that are a burden on patients, and late enrollment in hospice, all of which jeopardize the quality of end-of-life care and add to its costs,” they added.
Alternatives to emergency and in-hospital services, such as home emergency and health services and caregiver support, should be available to patients around the clock, in order to reduce the number of unnecessary 911 calls and emergency room visits a terminal patient in distress might make, they said.
The report also recommended improving medical education, training, and certification for clinicians who care for seriously ill patients, advocating for well-developed “standards for clinician-patient communication and advance care planning that are measurable, actionable, and evidence based.” The authors also emphasized the need for collaboration between primary physicians and specialists, nursing staff, caregivers, and other healthcare providers, in all matters relating to end-of-life care.
Ultimately, these sweeping reforms stand to lower national health care costs by reducing expensive and unwanted acute care services, such as 911 calls, emergency room visits, and hospitalizations, for patients at the end of life, the report argued.
“Because most people who participate in effective advance care planning choose maximizing independence and quality of life over living longer, advance care planning can potentially save health care costs associated with unnecessary and unwanted interventions,” the authors wrote. “The committee believes these savings would free up funding for relevant supporting services — for example, caregiver training, nutrition services, and home safety modifications — that would ensure a better quality of life for people near the end of life and protect and support their families.”
RESPONSE TO THE REPORT
Independent experts involved in caring for patients at the end of life applauded the paper for its broad scope and its attention to key issues plaguing end-of-life care, including the need for an ongoing discussion between patient and physician about end-of-life care preferences; for better education and awareness of palliative and hospice care options; and for restructuring Medicare in order to de-incentivize unnecessary medical interventions for patients at the end of life.
“The contrast between the manner in which Americans are approaching their end of life and the type of care they're asking for is, almost any way you look at it, inappropriate,” Adam Marks, MD, an assistant professor of hospice and palliative medicine at the University of Michigan Health Center and associate director of the adult Palliative and Supportive Care Clinic at the East Ann Arbor Health and Geriatrics Center in Ann Arbor, MI, told Neurology Today.
Dr. Marks cited data, which is also mentioned in the IOM report, showing that those with advanced illness who pursue palliative and comfort-centered care at the end of life tend to live longer than those who seek aggressive medical interventions. Palliative care specialists “want our patients to get all of the care that is going to benefit them, but none of the care that isn't,” he said.
Stephan A. Mayer, MD, a neurointensivist at Mount Sinai Hospital and director of the Institute for Critical Care Medicine at the Icahn School of Medicine at Mount Sinai in New York, NY, agreed in particular with the report's suggestion that perverse financial incentives motivate a standard of end-of-life care that goes against a patient's best interests.
“I've seen low-quality end-of-life care, and it's horrible,” Dr. Mayer said. “Large numbers of frail elderly are effectively warehoused, they get tracheostomies and feeding tubes, they're bed-bound, and doctors come by for their brief visits and bill Medicare. The doctors are not having discussions about what this person would really want, and they're not even offering comfort as an option.”
The recommendation that physicians could initiate advance care planning conversations as early as when a patient turns 18 also elicited positive comments from experts, with a few caveats. All agreed that drawing attention to end-of-life care early in life may serve to normalize and de-stigmatize the conversation, and that involving family members and caregivers in advance care planning discussions could be extremely helpful.
However, Dr. Marks cautioned against getting into the specifics of advance care planning with a young patient who is not terminally ill. “I don't want to see detailed advance directives being filled out by a patient at age 18, because they will be almost meaningless,” he said. But, he added, “goals of care isn't a destination, it's a process. I like the idea of introducing those concepts at 18.”
Allison R. Gray, MD, a neurologist in private practice in Boston, MA, added that the report's emphasis on including family members and caregivers in advance care planning discussion was significant because it may cut down on instances where surrogate decision-makers do not know how to act in the best interests of patients who become too incapacitated to express themselves.
“Having health care providers work with the families and involve them in the conversation [would be helpful], because hopefully when the family has heard ‘This is what I want’ so many times, they can't ignore it,” she said. Dr. Gray previously collaborated on the Neurology Goals of Care Initiative at Massachusetts General Hospital, an ongoing program tasked with improving end-of-life care for patients with neurological illness.
“Even with all the planning in the world, you're never going to be able to completely account for the specific circumstances, the nuances and the gray areas, when it's really crunch time,” Dr. Mayer added. “For a lot of the people that have to make these [end-of-life] decisions, the responsibility is thrust upon them. We need to start focusing more on the surrogate decision-makers, the role of the family in actively dealing with the crisis situation.
“It's always a three-way conversation” between the physician, the patient, and the family member or surrogate decision-maker, he said.
BETTER COMMUNICATION
One of the best ways to reform and re-frame the public discourse around end-of-life care is to shift the conversation from an emphasis on death and dying to an emphasis on quality of life, Dr. Marks said — a concept that was not discussed as thoroughly in the IOM report.
“The conversation continues to be about death and dying, and patients and doctors aren't too keen to have that conversation,” Dr. Marks said. “But when we talk about palliative care, we're not trying to say that palliative care is going to help you die better, we're saying it is going to help you live better.”
“Terms like ‘pull the plug’ and ‘withdraw care’ make my skin crawl,” Dr. Gray said. “I prefer the term ‘changing the goals of care.’ My hope is that changing the language we use will make people less nervous that we're trying to do less [to care for the patient]. You're actually doing a lot more to help the patient, you're just doing it in a different way.”
By framing the conversation in terms of quality of life, they said, patients may be better equipped to understand and consider the benefits of palliative and hospice care.
More education about palliative and hospice care, as well as teaching physicians how to best frame conversations about end-of-life care, will be part of the solution, Dr. Gray said. “Our ability as healthcare providers and physicians to talk to patients and their families in a compassionate and knowledgeable way about end-of-life issues is so lacking. The fact that the report is putting a spotlight on the lack of education is important, because it needs to be addressed.”
There is a need, several experts said, to better define the boundaries of palliative care in the field and to train neurologists to recognize those standards and to know when it is appropriate to refer patients to specialists in palliative care in the toughest situations.
A multidisciplinary approach, with frequent communication between physicians, palliative care specialists, nurses, and other health care providers, will ultimately lead to a higher standard of care for the patient, said Lynne P. Taylor, MD, FAAN, a neuro-oncologist at the Virginia Mason Hospital and Seattle Medical Center in Seattle, WA.
“For instance, if you're a neuro-critical care physician and you're taking care of a stroke patient, you need to focus on the ventilator settings and whether the patient is going to recover,” she said. “It can be very helpful to have a colleague who is palliative care-based to take some of that burden off you, to have conversations with the family. Because the physician and the family may share a fixed delusion that every [intervention] is going to work, and you need somebody at arm's length to say, ‘Hold on a minute, let's go back to the patient's goals and preferences. Is this really consistent with what the patient would have wanted?’”
CHALLENGES AHEAD
Changing public and physician attitudes toward palliative and hospice care and providing medical education that trains physicians to have more compassionate, comprehensive conversations about end-of-life care with their patients will take time, said James L. Bernat, MD, FAAN, a professor of neurology and medicine at Dartmouth-Hitchcock Medical Center in Lebanon, NH.
“But attitudes are already changing,” he said. “Nearly every medical school now has some palliative care education, and it's part of postgraduate training and residency programs, too. We have palliative care faculty in essentially every academic medical center, and in most teaching hospitals. It's a huge social change that's occurred over the last 30 years or so. I think this process is well underway.”
However, the report's financial recommendations — those that would retool Medicare's reimbursement structure, de-emphasizing acute care at the end of life in favor of home health services — will require congressional action. And the US Congress is just as ideologically fragmented as it was in 2009, when a provision that would have reimbursed physicians for having end-of-life care discussions was removed from the Affordable Care Act over a public misconception that the bill would lead to “death panels,” Dr. Bernat pointed out.
“That reasonable, simple, important provision was left out of the Affordable Care Act because of demagoguery and fear-mongering. The ‘death panel’ myth was totally unfair and wrong — wrong not just morally, but factually — yet it took off and it poisoned the atmosphere to such an extent that even mentioning an end-of-life discussion became a barrier to having a politician vote in favor of the Affordable Care Act.”
All were optimistic that the report would continue to push end-of-life care in the right direction, however. “Change is incremental, and I don't think anyone is expecting us to burn the health care system to the ground and build it back up overnight,” Dr. Marks said. “But I think [the report] is an exciting opportunity to change the conversation.”
