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QUESTION: Where is the best place to die? Answer: The UK, but Australia is OK too.
This was the conclusion reached following recent research by the London-based The Economist Intelligence Unit, which was commissioned by the Lien Foundation, a Singaporean philanthropic organisation with an interest in elder care.
The research, which resulted in the Quality of Death Index 2015, examined the quality of death in 80 countries using 20 quantitative and qualitative indicators across five categories: the palliative care environment, human resources, the affordability of care, the quality of care and the level of community engagement.
The index also included comments from 110 palliative care experts.
As the number of older people continues to increase in most countries, so does the demand for care arrangements at the end of life.
Since the first edition of the Index was published in 2010, there have been improvements in palliative care in many countries but “even top-ranked nations struggle to provide adequate palliative care services for every citizen”.
Several interesting observations derive from the latest study.
First, the UK ranks first for the best quality of death. It has national policies on palliative care, integrates palliative care into the National Health Service, has a strong hospice service and scores top for quality of care. Australia and New Zealand came in second and third, with the US and Canada ranked ninth and eleventh.
Second, the countries that ranked highly, besides being rich, usually had a national palliative care policy, spent a lot of public money on health care, had extensive training in palliative care for medical workers, provided financial cover for palliative care patients, had opioids widely available and encouraged strong community awareness about palliative care.
Third, extending the second point, the report commented on the value of national policies (rather than ad hoc-ery) that underpin effective palliative care, especially ones that integrate palliation into the mainstream health care system.
Fourth, training for all doctors and nurses is critical to meet growing demand.
Fifth, palliative care must be subsidised to enable equity of access. As part of good quality care, the report asserts: “The best care also includes inter-disciplinary teams that also provide psychological and spiritual support and physicians who involve patients in decision-making and accommodate their care choices”.
This is familiar territory in Australia.
Sixth, only 33 of the 80 countries had opioid medications freely available and accessible. This is due to politics, not the unavailability of the drugs.
Seventh, Death Cafe — described as “a group directed discussion of death with no agenda, objectives or themes” — helps customers discuss what they want at the end of life so people can have a normalised conversation about dying. They are springing up in Australia.
Eighth, effective palliative care, while costly, can meet a patient’s needs for pain relief and symptom control, yet still save money that would otherwise be wasted on expensive but futile care in a hospital.
This does not disadvantage the dying patient. Indeed, a randomised trial of palliative care showed that for patients with metastatic non-small-cell lung cancer, those receiving standard energetic care did not fare as well as patients who received early palliative care. The early palliative care patients enjoyed better quality of life and mood.
Ninth, while Australia is relatively well resourced for palliative care, the rapid growth in demand in countries such as China, Greece and Hungary, which already have limited availability of care, bodes poorly for the future. The demographic shifts towards an older population with diabetes, dementia and cancer will exert even more pressure on palliative services.
What are the options?
In Switzerland, assisted suicide has been possible since 1942, and the Netherlands has had legislation since 2002 allowing both assisted suicide and euthanasia under certain conditions.
The debate swirls arounds whether palliative care can meet all the needs that might otherwise be met through assisted suicide. Supporters of assisted suicide often assert that simply knowing that it is an option brings peace and security. It is not used often, even where it is legal.
Palliative care was a strong theme in the recently published book by Boston surgeon Atul Gawande called Being Mortal. Based on stories of his patients and relatives near the end of life, he says that “our ultimate goal, after all, is not a good death but a good life to the very end”.
So it is encouraging to know, based on the evaluation of the team from The Economist and the data and opinions that they have assembled, that Australia ranks so highly internationally for the palliative care that it provides.
Nevertheless, in extending this plaudit to us, the report reminds us that globally we have a huge challenge and we could all — even in the top-ranked countries — do better. However, we should at the same time congratulate our palliative care colleagues for what they do so well right now.
Professor Stephen Leeder is emeritus professor at the Menzies Centre for Health Policy at the University of Sydney. Find him on Twitter: @stephenleeder
Jane McCredie is on leave.
PCOC own data shows in the Terminal Phase 1/5 patients report moderate to severe distress from pain and 1/5 distress with breathing. PC does NOT meet ALL patient needs!
If truly evaluating the “options” Leeder should have included – Oregon USA has had assisted dying CHOICE since 1997, Washington State 2002 & Vermont have similar legislation, Montana & New Mexico have assisted dying CHOICE due to a court ruling. In Oct 2015 Californian passed their End of Life Care Option Act, giving 38 million Americans their right to CHOOSE an assisted death. The medical associations in Oregon & California have adopted a neutral position: doctors may act within their conscience within the law. Check out the 2014 Quebec Act Respecting End of Life care that regulates both terminal sedation & assisted dying and Canadian Supreme Court decision in 2015! Quebec doctors were actually surveyed and 75% showed support prior to this change in Quebec law.
Please compare a normal PC death with this assisted death in Switzerland for a person with a brain tumour: “My uncle had a beautiful death with his family around him, good music, good wine and a painfree end”.
Bob Dent, one of those who used voluntary euthanasia when NT law allowed it, made a statement at the time of his death that was quoted in parliament: “If you don’t agree with voluntary euthanasia then don’t use it, but don’t deny me the right to use it if and when I want,” This is in keeping with the philosopher, John Stuart Mills’ famous “harm” principle: “The only purpose for which power can be rightfully exercised over any member of a civilised community against their will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant.”
Assisted suicide and euthanasia would not generally be considered ‘options’ to address the rapid growth in demand for quality palliative care that comes with demographic change.