The United States ranks 43rd in end-of-life care quality among 81 countries according to a recent study in the Journal of Pain and Symptom Management. Worldwide, much improvement is needed in the realm of caring for terminally ill patients, researchers found.
For the purposes of this study, researchers defined “end-of-life care” as any health care services received by terminally ill patients in their final days, including but not limited to hospice. The study found that globally most of these patients die in pain, under significant psychological distress, and not in the place of their choice.
Dying patients also often express regret about the treatment they received, particularly high-cost, high-acuity services that are of little benefit at that stage of their illness. The families of these patients are also often left with medical debt that can lead to bankruptcy.
“In developing countries, you guys don’t really deliver end-of-life care very well. Lots of people die in pain, not at their place of choice, not even in clean and safe spaces — basic stuff that you could improve fairly inexpensively,” lead researcher Eric Finkelstein told Hospice News. “For developed countries, I think the message is: You guys aren’t great, either.”
Finkelstein is executive director of the Lien Centre for Palliative Care at the Duke-National University of Singapore Medical School (Duke-NUS), as well as the Duke Global Health Institute.
The researchers surveyed more than 1,200 primary caregivers who had lost a loved one to determine what patients’ valued most at the end of life. They then asked a cadre of 181 palliative care experts from around the world to grade their countries’ performance on the 13 indicators that these caregivers identified most frequently.
While the published study itself included country-by-country ratings, more details about each individual nation’s performance appear on the Lien Centre’s website.
The U.S. health care system performed well on indicators such as treating patients kindly, asking sufficient questions to determine patient needs, encouraging contact with friends and family and providing care in a clean, safe and comfortable environment.
The indicators for which the United States had its lowest scores included:
“[In developed countries], oftentimes, you over treat people. You leave people with high medical bills, and in the end, they have lots of regret,” Finkelstein said. “You focus too much on trying to keep people alive and not enough on helping people die gracefully, to the extent such a death exists.”
The availability of hospice and palliative care does not guarantee a positive end-of-life care experience, it can make a difference, the study noted.
Many of the common problems identified in the United States are those that hospice care is specifically designed to prevent. These include a focus on duration rather than quality of life, providing services that are not concordant with patients wishes and goals, as well as inattention to nonmedical concerns.
“Notably, greater integration of palliative care into the community and within the broader health system, can have a far-reaching impact on ensuring high-quality [end-of-life] care for all, particularly from an equity perspective,” the researchers wrote in the study.
Hospice utilization dropped to 47.8% among Medicare decedents in 2020, down from 51.6% in 2019, according to the Medicare Payment Advisory Commission. This was the first decline in several years, and is at least in part attributable to patients’ dying more quickly during the COVID-19 pandemic.
Though the number of Medicare decedents who used hospice increased by 9% during this span, the share of deaths rose more rapidly than enrollment, leading to a decline in utilization rates that was “not unexpected” given the pandemic, according to MEDPAC.
The palliative care experts who evaluated each country’s performance in the Duke-NUS study had to be a palliative care clinician with a leadership role in a national professional hospice-palliative care association or similar organization, or a government employee or academic with knowledge of palliative care in the country. The experts also had to be at least 21-years-old and be able to communicate in English. Researchers sought at least two experts per country.
In addition to the 13 indicators, the study found correlations between better quality end-of-life care and the presence of a government entity responsible for palliative care or hospice. Positive correlations also occurred among countries with a written national strategy or plan for palliative care delivery and health care laws or policies that include those services.
Countries with the highest scores included the United Kingdom, Ireland, Taiwan, Australia, the Republic of Korea, and Costa Rica. The lowest-ranked countries were Haiti, Senegal, Brazil, Lebanon and Paraguay.
“It’s not all about, for example, managing pain and discomfort,” Finkelstein said. “I would say to any health care system — be it the country or the region or the clinic — focus on what matters to patients.”
Duke Global Health Institute, Duke-National University of Singapore Medical School, Lien Centre for Palliative Care
Jim Parker is a subculture of one. Swashbuckling feats of high adventure bring a joyful tear to his salty eye. A Chicago-based journalist who has covered health care and public policy since 2000, his personal interests include fire performance, the culinary arts, literature, and general geekery.