To promote awareness of issues surrounding end-of-life care, the Lien Foundation commissioned the Economist Intelligence Unit to devise a “Quality of Death” Index. The Index ranks 40 countries (of which 30 are OECD nations) on their provision of end-of-life care.
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 Quality of Death Index scores 40 nations on 24 indicators in four categories:
- Basic end-of-life healthcare environment
- Availability of end-of-life care
- Cost of end-of-life care
- Quality of end-of-life
Eleven of the indicators are quantitative, including factors such as life expectancy and healthcare spending as a percentage of GDP.
Ten indicators are qualitative assessments, such as the level of public awareness of end-of-life care.
Three are status indicators of aspects such as whether a country has a government-led end-of-life care strategy or is in the process of setting one up.
Index rankings are available elsewhere on this website.
The précis below summarizes some key points from the Report that accompanies the Index. For full discussion of these points please refer to the Report, available for download here.
Quality of death is an increasingly pressing issue
Sometime in the next few years, there will be more people aged over 65 than children under 5 for the first time in human history. Population ageing is particularly fast in some developing nations like China.
On top of this demographic shift, demand for end-of-life care is set to rise. With longevity comes more complex diseases of ageing that are harder and more costly to manage, including cardio-vascular disease, dementia, Alzheimer's disease, arthritis and diabetes.
Dying well is still a privilege
While more than 100 million 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, according to the Worldwide Palliative Care Alliance.
THE QUALITY OF DEATH INDEX
The UK has the best quality of death
The UK, where the modern hospice movement originated in the 1960s, is top of the Quality of Death Index, owing to its advanced hospice care network and long history of state involvement in end-of-life care. The UK ranks number one in the Availability and Quality of End-of-Life Care categories.
Some developed nations are low-ranking
Some advanced nations rank poorly on the Index—for instance Finland at 28 and South Korea at 32. Often, in these nations, policy is not well co-ordinated and the quality and availability of end-of-life care can be uneven.
Some common factors may include a lack of trained staff, inadequate coordination of healthcare services and a prioritisation of curative medicine over palliative care in the medical system.
Some nations rank higher than expected
Hungary's high position (11th) may surprise. But this is because it has accelerated its development of end-of-life care in the last few years and scores well in the Quality of End-of-Life Care category.
Other Eastern European nations (for example Poland, at 15th) have installed advanced programs, as advocates have been successful in persuading governments to bring about positive change.
US: more reform needed?
The US, which recently passed landmark national healthcare reform legislation, spends the most of any nation on healthcare but ranks just 9th in the Index, principally due to the high costs borne by the patient.
The US is an example of the many nations with limited public funding for end-of-life care, with funding going to treatment rather than palliative care. An extra restriction is that government-funded reimbursements are available only if patients give up curative treatments.
CULTURAL ISSUES IN END-OF-LIFE CARE
Cultural taboos hinder discussion and greater awareness.
Varying attitudes to death and dying colour debate about end-of-life care. For example, in Chinese culture, talking about death is largely taboo, and public awareness of palliative care is very low. In India, to take another example, death itself is less a taboo but the truth is often hidden from the dying by protective relatives.
In some developed nations, for instance the US, appropriate end-of-life care is often trumped by a “cure at all cost” attitude among medical professionals. Another cultural barrier to delivering palliative and hospice care is that people associate such care with “giving up” on life, rather than providing quality of life when suffering terminal illness.
Raising public awareness is vital
Hospice professionals see their task as similar to those working in HIV-AIDS awareness: to educate the public to see that palliative care is really about living as well as possible for as long as possible. Public education campaigns are vital in this task.
THE ECONOMICS OF END-OF-LIFE CARE
End-of-life care must rely on a variety of funding models
Across the world, public healthcare funding often prioritizes conventional treatment and provides only partial support for end-of-life care services, meaning such care must rely on philanthropy and community help.
In the US, public funding is available through Medicare and Medicaid, but with numerous restrictions.
In the UK a network of non-profit hospices are supported by charitable donations, with supplementary government funding.
In Europe, hospices tend to be partly financed privately or charitably. But a widespread cultural belief that governments should provide and pay for healthcare services has hampered private sector provision of end-of-life care services.
In Asia's developed nations, palliative care services are getting more public funding. For example, in Singapore, palliative care is available in most state-funded hospitals and is subsidized like other hospital services. In Taiwan, the government recently extended national health insurance to cover hospice care for most end-of-life diseases.
Funding is scarce in developing nations
At the other end of the scale are developing countries such as China and India, where state funding levels for end-of-life care are very low and most people pay for everything themselves.
In Africa, international aid is available through missions to tackle HIV-AIDS—but this often means funding palliative care for cancer sufferers is neglected. In general a lack of government funding is a significant issue in Africa as well.
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. A 2006 study in Spain (published in the Journal of Pain and Symptom Management) found savings of 61% from shifting from conventional hospital treatment more to palliative care and homecare and lower use of emergency rooms.
However, while end-of-life care itself may be cheaper both in terms of treatments and lower in-patient costs per day than hospital treatment, as people live longer and are more likely to spend several years with the conditions that will eventually kill them, the cost of end-of-life care as a percentage of overall healthcare spending is likely to rise sharply.
Kerala provides a good community model
In India, Kerala state has an exceptional system, providing two-thirds of the country's palliative care services when it only has 3 per cent of the population.
The state has a formal palliative care policy, funds community-care programmes, and was among the first to allow use of morphine for palliative care. Another key factor is the availability of committed volunteers to provide end-of-life care support.
POLICY ISSUES IN END-OF-LIFE CARE
High-level support is necessary
High-level official support for end-of-life care is important to raising standards and coverage of such care. Deeper integration of palliative care into national healthcare systems is also vital.
Few countries have national strategies
Of the 40 countries in the Index, 29 have no national palliative care policy. Of the remaining, only seven have national policies in place – Australia, Mexico, New Zealand, Poland, Turkey, UK and Switzerland; while four—Austria, Canada, Ireland and Italy—are in the process of developing policies
But even with a country strategy, follow-through is important. Turkey, for example, has a national policy in place but ranks poorly in all the Index sub-categories. End-of-life care must “get into the bloodstream of policy”, in the words of one interviewee.
Access to opioids is crucial
The key to end-of-life care is pain control. But the World Health Organization estimates that 5 billion people live in countries with insufficient or no access to medications controlling severe or moderate pain. Another problem is that many medical staff lack training in administering these drugs.
More training is needed in various disciplines
One priority area for policy is boosting training in end-of-life care and related aspects such as counselling.
The value of this is highlighted in cases such as Hospice Africa Uganda, one of the continent's best examples of end-of-life care, where half the funding since 1993 has been spent on training all medical students in palliative care.
Other good examples include Australia, which has had a specialty training programme since the 1980s, and Canada, which has developed curricula in all its 17 medical schools.
Home-based care is growing in importance
Although it is often associated with separate institutions, palliative care can often be delivered at home—in accordance with the wishes of many terminally ill patients.
In the US, according to the National Hospice and Palliative Care Organization, while 80% of Americans said they wished to die at home, of the 2.4 million dying every year, fewer than 25% actually did so. Yet of the patients who receive palliative care, more than 75% die at home.
In developing countries, home-based care may be the norm, given the lack of funding for end-of-life care infrastructure.
Training and support systems are vital, as community-based care by non-professionals can leave patients without adequate pain control or counselling.
Technology can help home-based care
Homecare will become more feasible in future, with greater use of mobile phones, home monitoring devices and distance medicine. Technology will also allow more people to stay at home longer, as they would wish.
The research shows that a higher quality of death depends on certain key factors (in the order they are addressed in the Report):
- Dealing with cultural taboos
- Public education in end-of-life care
- Sufficient funding
- High-level political commitment
- Co-ordinated policy
- Laws to allow access to pain-killing drugs
- Training of doctors and nurses
This is by no means an exhaustive list. The human factor is also important: for example the need for counselling not only for the dying, but also for their families.
Other important issues include addressing a “cure at all costs” mentality prevalent in medical culture, and an over-reliance on life-preserving procedures at the expense of palliative medicine.
Changing this will require change to funding models that reward medical providers for procedures rather than outcomes, as in the US. Families and communities may find themselves taking an increasing share of the burden. But more training and support is needed to provide high standards of care in the home.
A race against time
Given the rate that populations are ageing and coming to need end-of-life care services, for governments and providers, it is a race against time to improve the standards of such care.