Quality of Death Survey 2015.
Being world beating in The Quality of Death stakes is a bit of an odd thing for the UK to be a world leader in. But it is comforting, especially with all the fuss about the NHS. Death happens to all normal folk, but planning for it is often non-existent. No up to date Will, no Powers of Attorney (so the family stay in charge right up to the end). And no prepaid funeral plan, so the family get stuck with stumping up several thousand pounds at a weeks notice or no funeral and extra costs.
Yes, it is distressing to talk about and in many cultures is taboo. we are fortunate in the UK to have a great NHS (not perfect, just great) and lots and lots of hospices to help people – and their families – towards the end. (If you are a hospice, contact us about our fund raising service.) Too often such care is simply not available. According to the Worldwide Palliative Care Alliance, while more than 100,000,000 people annually would benefit from hospice and palliative care (but 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. This 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. 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. This is often due to 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. A deeper embedding of palliative care into broader health policy, and the improvement of standards of end-of-life care will raise the “quality of death.” And 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. This ranks countries according to their provision of end-of-life care. To go with the Index, the Economist Intelligence Unit interviewed experts around the world. It also reviewed existing research on the topic of end-of-life care for the white paper. It addresses issues on the Quality of Death as quantified by the Index rankings. Not all the complex cultural, ethical and sociological issues connected to dying could be included in the Index. The White 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. Their conclusion:
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. 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.