It makes us uncomfortable to talk about, so any discussion of end-of-life care needs gets pushed under the rug for as long as possible, sometimes for so long that it’s too late to take meaningful steps to ease the transition. Understandably we want to be focused on quality of life, especially as we enter the last phase of our lives, but we are also entitled to a quality of death, one that is painfree and serene. How do we, as a country, rank when it comes to enlightenment about death and palliative care? Well, we made the top 10.
The Economist Intelligence Unit, business information arm of the Economist Group, publisher of The Economist, just released a “Quality of Death” Index that ranks countries according to their provision of end-of-life care. The first-ever global study, commissioned by the Lien Foundation, a Singapore philanthropic house, measures the current environment for end-of-life care services across 40 countries. The United States tied for the ninth spot with Canada.
The global statistics are less than encouraging. According to the Worldwide Palliative Care Alliance (WPCA), while more than 100 million patients (and family caregivers worldwide) need hospice care annually, fewer than 8 percent actually receive it. “To highlight this gap and advocate for better care for the dying, the Lien Foundation commissioned the Index which provides a global benchmark on the provision of end-of-life care,” said Mr. Poh Wah Lee, Lien Foundation CEO.
The index scores countries across four categories: basic end-of-life healthcare environment; availability of end-of-life care; cost of end-of-life care and quality of end-of-life care. At the top of the list is the United Kingdom, which has led the way globally in terms of its hospice care network and statutory involvement in end-of-life care. According to the report, the US does not have an overall higher ranking principally because of the financial burden of end-of-life care, which reflects the high overall cost of US healthcare. It ranks somewhat higher in terms of infrastructure at 7th and 8th place for quality and availability of end-of-life care respectively.
“The US’s ranking in the Quality of Death Index indicates the need for our nation to build a system of care around bringing the care to the patient— preferably in their own homes—by providing support for family caregivers, care teams that can go to homes with emergency coverage and strong integration of hospice care expertise to maximize quality of life for both patient and family,” commented Dr. Diane Meier, Director of the Center to Advance Palliative Care (http://www.capc.org) and Professor of the Department of Geriatrics and Palliative Medicine at Mount Sinai School of Medicine. “This means fewer resources for hospitals and nursing homes, and more resources for home and community-based care services. The US is fortunate among nations to have broad access to hospice care under a Medicare benefit that serves nearly 40 percent of all people who die, as well as their bereaved families and loved ones.”
For the first time in history, people over the age of 65 will soon outnumber children under the age of five. By 2050, about one in five Americans will be over the age of 65, with about 5 percent reaching 85 and older (up from 2 today). Much hospice care can be, and is, given at home—more than 75 percent of those receiving such care in the US die in their own homes. By increasing the proportion of community and homecare options, hospice care can reduce costs associated with hospital stays and emergency admissions.
“Quality of death is key to quality of life, especially with aging populations,” said Poh Wah Lee. “We hope that the results of the index will spark ‘die-logues’ and drive public awareness as well as help decision makers determine priorities and formulate policies.”
Many rich nations lag a long way behind in the overall score: these include Denmark (22nd), Italy (24th) and South Korea (32nd). In these cases the quality and availability of care is often poor and policy co-ordination lacking. The bottom-ranked countries in the Quality of Death Index include, unsurprisingly, developing and BRIC countries, such as China, Brazil, India and Uganda, where despite notable exceptions of excellence—such as the Indian state of Kerala and services delivered through Hospice Africa Uganda—progress on providing end-of-life care is slow. In the case of China and India, further problems are vast populations for whom end-of-life care coverage extends to only a fraction of those in need.
The Economist Intelligence Unit has analyzed the Index results in a white paper, for which it interviewed experts around the world. The key findings are:
- Combating perceptions of death and cultural taboos is crucial to improving hospice care. Death and dying are stigmatized in some cultures to the point where they are taboo—as in Chinese culture. In Western societies death has become medicalized and curative procedures are often prioritized ahead of hospice care. In the US, discussion of end-of-life care often inflames religious sentiment that holds the sanctity of life paramount. The issue is complicated by the perception that hospice care is often associated with “giving up.”
- Drug availability is the most important practical issue. Pain control is the point from which all hospice care stems, and the availability of opioids (morphine and its equivalents) is fundamental to quality of end-of-life care. But across the world an estimated 5 billion people lack access to opioids, principally due to concerns about illicit drug use and trafficking. Lack of training is also a major problem in the US, with many doctors and nurses ignorant of how to safely and effectively administer opioid analgesics.
- State funding of end-of-life care is limited and often prioritizes conventional treatment. In many countries—even where hospice care treatment is available through national healthcare systems or insurance—end-of-life care providers rely heavily on charitable donations and philanthropic activity for support. In the US, while hospice care is available through public medical insurance, patients must relinquish curative treatments in order to be eligible for their hospice benefits (unlike in the UK, for example).
- More hospice care may mean less health spending. By increasing the proportion of community and homecare, hospice care can reduce costs associated with hospital stays and emergency admissions. In Spain, one study found that in 2006 a shift away from the use of conventional hospital treatment toward hospice care, an increase in homecare and lower use of emergency rooms, generated savings of 61 percent compared with expenditure recorded in a 1992 study. However, the costs associated with non-cancer hospice care are higher than for cancer-related care. And as the population ages, more end-of-life care will be needed overall.
- Public debates about euthanasia and physician-assisted suicide may raise awareness, but relate to only a tiny minority of deaths. While debates about these issues gain the most media attention, they affect only a tiny proportion of the terminally ill. (Consequently, policies on these issues are not included in the Index, although the legal status of “do not resuscitate” orders is included.) Nonetheless, pressure brought on policymakers over these issues can be a catalyst for the improvement of hospice care services—as in Australia, where the federal overturning of a Northern Territory euthanasia law in 1996 led to increased national funding for end-of-life care.
To read more: The full white paper is available for download free of charge at: www.qualityofdeath.org
About the Economist Intelligence Unit: Through a global network of more than 650 analysts and contributors, it continuously assesses and forecasts political, economic and business conditions in more than 200 countries. As a leading global provider of country intelligence, it helps executives make better business decisions by providing timely, reliable and impartial analysis on worldwide market trends and business strategies. For more information, visit www.eiu.com
About the Lien Foundation: This Singapore-based philanthropic house is noted for its model of radical philanthropy. It invests in innovative solutions, convenes strategic partnerships and catalyses action on social and environmental challenges. The Foundation drives institutional capacity building to address crucial community needs, and empowers individuals to reach their full potential. It seeks to enhance educational opportunities for the disadvantaged, excellence in eldercare and environmental sustainability in water and sanitation. The Foundation’s Life Before Death initiative seeks to get people thinking and talking about a universally taboo subject—death and dying—and to highlight the urgent need for improved care for the dying. For more information on the Life Before Death initiative, visit www.lifebeforedeath.com