“Quality of life” is a common phrase. The majority of human endeavours are ostensibly aimed at improving quality of life, whether for the individual or the community, and the concept ultimately informs most aspects of public policy and private enterprise. Advancements in healthcare have been responsible for the most significant quality-of-life gains in the recent past: that humans are (on average) living longer, and more healthily than ever, is well established. But “quality of death” is another matter. Death, although inevitable, is distressing to contemplate and in many cultures is taboo. Even where the issue can be openly discussed, the obligations implied by the Hippocratic oath—rightly the starting point for all curative medicine—do not fit easily with the demands of end-of-life palliative care, where the patient’s recovery is unlikely and instead the task falls to the physician (or, more often, caregiver) to minimise suffering as death approaches. Too often such care is simply not available: according to the Worldwide Palliative Care Alliance, while more than 100m people annually would benefit from hospice and palliative care (including family and carers who need help and assistance in caring), less than 8% of those in need access it.
Few nations, including rich ones with cutting-edge healthcare systems, incorporate palliative care strategies into their overall healthcare policy—despite the fact that in many of these countries, increasing longevity and ageing populations mean demand for end-of-life care is likely to rise sharply. Globally, training for palliative care is rarely included in healthcare education curricula. Institutions that specialise in giving palliative and end-of-life care are often not part of national healthcare systems, and many rely on volunteer or charitable status. Added to this, the availability of painkilling drugs—the most basic issue in the minimisation of suffering—is woefully inadequate across much of the world, often because of concerns about illicit use and trafficking. The result of this state of affairs is an incalculable surfeit of suffering, not just for those about to die, but also for their loved ones. Clearly, the deeper inclusion of palliative care into broader health policy, and the improvement of standards of end-of-life care—raising the “quality of death”—will also yield significant gains for humanity’s quality of life.
With this in mind, the Economist Intellience Unit was commissioned by the Lien Foundation, a Singaporean philanthropic organisation, to devise a ”Quality of Death” Index to rank countries according to their provision of end-of-life care. To accompany the Index, the Economist Intelligence Unit interviewed experts around the world and reviewed existing research on the topic of end-of-life care for this white paper, which addresses issues relating to the Quality of Death as quantified by the Index rankings. Not all of the complex cultural, ethical and sociological issues connected to dying could be included in the Index, but many of these are examined qualitatively in the chapters below. (The Index, and this paper, does not address violent or accidental deaths, which are undoubtedly a great cause of end-of-life suffering globally, but for which remedies are rarely related to standards of healthcare.) This paper also puts the Index findings into context and attempts to define the issues that must be considered when policymakers seek to improve the quality of death faced in their countries by those with incurable illness. Its key findings are as follows:
- The UK leads the world in quality of death; many developed nations must work to catch up. The UK has led the way in terms of its hospice care network and statutory involvement in end-of-life care, and ranks top of 40 countries measured in the Index (see Figure 1). This is despite having a far-from-perfect healthcare system (indeed, it ranks 27th on the Basic End-of Life Healthcare Environment sub-category, which accounts for 20% of the overall score). But the UK is top in the Quality of End-of-Life Care sub-category, which includes indicators such as public awareness, training availability, access to pain killers and doctor- patient transparency (and accounts for 40% of the overall score). However, in the overall score, many rich nations lag a long way behind: these include Denmark (22nd), Italy (24th), Finland (28th) and South Korea (32nd). In these cases the quality and availability of care is often poor and policy co-ordination lacking.
- Combating perceptions of death, and cultural taboos, is crucial to improving palliative care. Death and dying are stigmatised in some cultures to the point where they are taboo—as in Chinese culture. In Western societies death has become medicalised and curative procedures are often prioritised ahead of palliative 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”.
- Public debates about euthanasia and physician-assisted suicide may raise awareness, but relate to only a small 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 palliative 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.
- Drug availability is the most important practical issue. Pain control is the point from which all palliative 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 5bn people lack access to opioids, principally due to concerns about illicit drug use and trafficking. A lack of training is also a problem, with many doctors and nurses ignorant of how to administer them.
- State funding of end-of-life care is limited and often prioritises conventional treatment. In many countries—even where palliative care treatment is available through national healthcare systems or insurance—end-of-life care bodies rely on charitable donations and philanthropic activity to support them. In the US, while palliative care is available through public medical insurance, patients must relinquish curative treatments to be eligible for reimbursements (unlike in the UK, for example, where both courses of treatment may be pursued).
- More palliative care may mean less health spending. By increasing the proportion of community and homecare, palliative care can reduce costs associated with hospital stays and emergency admissions. In the US in particular, with the recent passing of a major healthcare reform bill, this is likely to become a focus of debate. In Spain, one study found that in 2006 a shift away from the use of conventional hospital treatment towards palliative care, an increase in homecare and lower use of emergency rooms, generated savings of 61% compared with expenditure recorded in a 1992 study. However, the costs associated with non-cancer palliative care are higher than for cancer-related care. And as the population ages, more end-of- life care will be needed overall.
- High-level policy recognition and support is crucial. Pioneering areas in developing countries—such as Uganda, and the state of Kerala in India—show the importance of receiving high-level backing for palliative care strategies. Yet only seven countries in the Index have a national policy in place (another four are developing them). In other countries, awareness at a national level has not led to coherent national policies: high-level statements of support for a general position (such as that articulated by the Council of Europe) aren’t enough. End-of-life care must “get into the bloodstream of policy”, in the words of one interviewee. Deeper integration of palliative care into national healthcare systems is also vital.
- Palliative care need not mean institutional care, but more training is needed. Much palliative care can be—and is—given at home; indeed more than 75% of those receiving such care in the US die at home. This is often representative of the patient’s wishes, which may be ignored in conventional curative medicine. However, capacity building, particularly training of caregivers, is necessary to enable homecare with suitably high standards. Technology will be of increasing importance in the provision of end-of-life care at home, whether to put those in developing countries in touch with doctors via mobile phones, or to enable remote monitoring of medical devices through advanced systems.
The Quality of Death Index measures the current environment for end-of-life care services across 40 countries: 30 OECD nations and 10 select others for which data was available. The Economist Intelligence Unit’s research team devised the Index, collated data and built the model from a wide range of indicators. They interviewed a variety of doctors, specialists and other experts to compile and verify the data.
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. Twenty-seven individual indicators fall into three broad categories:
- Quantitative indicators: Eleven of the Index’s 27 indicators are based on quantitative data, such as life expectancy and healthcare spending as a percentage of GDP.
- Qualitative indicators: Ten of the indicators are qualitative assessments of end-of-life care in individual countries, for example “Public awareness of end-of-life care”, which is assessed on a scale of 1-5 where 1=little or no awareness and 5=high awareness.
- Status indicators: Three of the indicators describe whether something is or is not the case, for example, “Existence of a government-led national palliative care strategy or agenda”, for which the available answers are Yes, No or In Progress.
The Index is an aggregate score of all of the underlying indicators, normalised to make the data comparable. Data is first aggregated by category and then overall, based on the composite of the underlying category scores. To create the category scores, each underlying indicator was aggregated according to an assigned weighting, determined by the EIU’s research team following consultation with experts interviewed for the research. Each category is also accorded a weighting within the overall score. Quality is given the largest weighting, accounting for 40% of the overall score; Availability accounts for 25%, Basic End-of-Life Healthcare Environment 20% and Cost 15%.
Although the index scores were calculated to two decimal places, they have been rounded to one decimal place in the chart above and in the white paper. For this reason, countries which appear to have the same score may nonetheless have different rankings.
A full methodology description is available in the Appendix of the white paper, available for download free of charge by clicking the following link:
Download the white paper here [PDF 3,411 KB].
A word from the Lien Foundation
The Lien Foundation is a Singapore philanthropic house 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 & dying—and to highlight the urgent need for improved care for the dying.