Better practices for people facing life threatening illness in the U.S. are needed to ensure they receive care that honors their wishes and supports the quality of their remaining life, but achieving this is hampered by the current, firmly entrenched dichotomies or “splits” in approaches to end-of-life care, according to an editorial published in the recent Death and Dying issue of the Journal of the American Medical Association.
Author Atul Gawande, MD, MPH, a surgeon at Brigham and Women’s Hospital in Boston and a professor at both the Harvard School of Public Health and Harvard Medical School, identifies three major obstructive dichotomies in the areas of medical practice, research and policy making that currently prevent delivery of best-quality care.
Despite advances in end-of-life care during the past several decades, pain and other symptoms continue to be reported as major unaddressed issues during a patient’s final year of life, notes Gawande. Studies in recent years reveal an increasing trend in the U.S. toward shorter hospice stays and greater intensity of care in the last months of life. This is due in part to
an “incorrect and harmful” widespread view among the public and the medical community that seeking palliative/ hospice care—or even addressing advance care planning—is a sign of “giving up,” Gawande observes.
Palliative care assists people with serious illness to set goals of care expanded beyond mere survival by eliciting values that matter to them and tailoring care to match those goals, explains Gawande. As well as pain and symptom control, such goals may include connecting with loved ones and attending to life projects and other objectives. “People everywhere
have essential needs aside from just living longer,” he comments.
Patients facing serious illness have goals and priorities of how they wish to live their lives, and these goals need to be discussed as a central part of their care with their physicians and loved ones, observes Gawande. Quality-of-life topics important to patients include:
- Fears and worries about what to expect
- Trade-offs, or aspects of life they are willing to sacrifice for a longer life and aspects they are not willing to sacrifice
- Physical functions they consider essential for life to be worthwhile
- Assurance that these concerns will be understood and supported
According to Gawande, a fundamental error in the delivery of high-quality end-of-life care is the assumed split in responsibility between clinicians tasked
with treating only the serious illness and those deemed responsible for providing care that supports quality of life for patients and families dealing with that illness.
“Such support is not a responsibility to be outsourced to a specialized few,” he writes. All clinicians caring for seriously ill patients are responsible for understanding and supporting patients’ priorities and concerns. However, innovations in physician education and training in the skills of communicating prognosis and discussing goals of care are needed, as is
research in how best to deploy these skills.
Research and Policies
Unfortunately, research on improving quality of life for patients and families dealing with serious illness has taken a back seat to that which narrowly emphasizes extending the quantity of life, unnecessarily pitting these two aims against one another, notes Gawande.
An even more harmful splitting is the Medicare hospice eligibility restriction, by which patients are forced to forego curative therapy in order to receive comprehensive, multidisciplinary care. “This has been a major contributor to the underuse of hospice, the underrecognition of the value of palliative care, and therefore the poor quality of life experienced by patients with advanced disease and limited life expectancy,” writes Gawande. “This needs to change.”
Gawande concludes with this reminder: “Everyone dies. Death is not an inherent failure. Neglect, however, is.”
Source: “Quantity and Quality of Life: Duties of Care in Life-Limiting Illness,” Journal of the American Medical Association; January 19, 2016; 315(3):267-269. Gawande A; Ariadne Labs, Brigham and Women’s Hospital and Harvard T.H. Chan School of Public Health, all in Boston, Massachusetts.