“Our ultimate goal, after all, is not a good death but a good life to the very end,” says author Atul Gawande, M.D., in his book Being Mortal.
Yet, end-of-life care is among the U.S. healthcare system’s largest and most enduring challenges, both in terms of quality and cost. The repercussions are immense. Spending on Medicare beneficiaries in their last year of life accounts for about 25 percent of total Medicare spending on beneficiaries age 65 or older—a fact that has remained true for decades.
To address the nation’s high healthcare costs, we first must tackle the issue of end-of-life care.
Overall, the U.S. ranks No. 9—beneath countries such as the U.K., Ireland, and Taiwan—on The Economist’s Quality of Death Index. The index looks at indicators across five categories: palliative and healthcare environment, human resources, affordability of care, quality of care, and community engagement. On affordability of care, the U.S. ranks No. 18.
Efforts to improve end-of-life care often center on improving individuals’ quality of life through access to palliative and hospice care, which emphasize patient wellbeing. Use of these services continues to rise, driven by multiple factors including increasing awareness of their benefits, an aging population, and higher incidence of chronic illness.
Yet, that growth is somewhat tempered by people’s perceptions and poor communication around end-of-life care. Many equate palliative care and hospice with giving up on themselves or a loved one, and research shows that more than 70 percent of people age 65 and older have not discussed end-of-life care with a physician. Forty percent have not documented their end-of-life care wishes.
There is a common disconnect between stated preferences for end-of-life care and the end-of-life care many ultimately receive. The issues are complex, and the impacts on the nation’s healthcare industry are significant. Hospital and health system leaders should be alert to the evolving trends influencing end-of-life care, and how they affect the populations they serve.
Rising Use Trends
Palliative care is defined as treatment for the discomfort and stress of serious illness, and is designed to provide relief of symptoms such as pain, shortness of breath, and fatigue. It can also include the provision of early assessments, psychological care, and support systems, and may be provided whether the patient’s condition is curable or not.
Hospice care, on the other hand, is defined as end-of-life care provided to patients expected to live six months or less. So while hospice care is always palliative, not all palliative care is hospice care. For both, the goal is to improve quality of life for patients and loved ones.
The number of patients who use hospice care has increased dramatically since it was first included as a Medicare benefit in 1982. More than 1.656 million patients were served by hospice in 2014, up from 700,000 in 2000, 210,000 in 1990, and 25,000 in 1982, according to the National Hospice and Palliative Care Organization.
As a percent of the population, however, the increase has been less dramatic in recent years. Patients who were receiving hospice services when they died increased from about 42 percent in 2010 to 45 percent in 2015.
Too Little, Too Late
The availability of palliative care services has increased more than 150 percent since 2005. Nearly 90 percent of hospitals with 300 beds or more, and two-thirds of hospitals with 50 beds or more, have palliative care programs. There currently are more than 4,000 hospice providers across the U.S., according to the Centers for Disease Control and Prevention.
Research suggests, however, that many people receive hospice care too late. A Journal of the American Geriatrics Society study of more than 560 individuals aged 70 and older found that only 43 percent were admitted to hospice during their last year of life. Of those, half received hospice care for less than 13 days prior to their deaths. Looking at the Medicare population, the median length of hospice service was 23 days in 2015, according to the latest statistics.
Despite broader recognition that more care isn’t necessarily better care, most patients receive aggressive medical interventions in their final days. In the last six months of life, the average patient has 26.5 physician visits. In the last month of life, half of Medicare patients go to an emergency department, one-third are admitted to an intensive care unit, and one-fifth undergo inpatient surgery.
Such statistics largely contradict research regarding attitudes toward end-of-life care. According to the Dartmouth Atlas of Health Care, more than 80 percent of people say they wish to avoid hospitalization and intensive care during the terminal phase of illness.
A Need to Refocus
The costs of the final barrage of care are high. Spending on Medicare beneficiaries age 65 and older in their last year of life is about six times what it is for other patients.
In its seminal 2014 report Dying in America, the Institute of Medicine found that end-of-life care often is focused narrowly on disease control, without palliative care. As a result, patients experience more pain, more anxiety, and more family exhaustion. They do not live longer, are hospitalized more, and receive more nonbeneficial care. The report concluded that a patient- and family-centered approach that honors individual preferences and promotes quality of life should be a national priority. To do this, healthcare providers must fully engage with patients and caregivers in an open and honest dialogue about end-of-life care.
Legacy healthcare organizations have a vital role to play in shifting perceptions and improving the overall quality of end-of-life care in the U.S. Some steps healthcare leaders can take include making sure their organizations:
- Emphasize palliative care early on, preferably years before patients progress to end-stage status
- Provide access to palliative and hospice services in a variety of forms and potential care locations, including inpatient and at-home care
- Offer training for physicians and clinicians on how to talk with patients and families about end-of-life care and advance care planning
Nearly everyone ultimately is affected by end-of-life care decisions for themselves and for loved ones. As the providers of such care, the nation’s hospitals and health systems have a profound responsibility to provide high quality, affordable care that meets the needs and wishes of patients and their families.
As Dr. Gawande says: “We have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.”