Among the most disturbing scenes of the COVID-19 era are images of patients dying in isolation, unable to be with loved ones during their final moments. But even before the pandemic, excruciating deaths were all too common in most parts of the world, according to a new survey on end-of-life care.
The study, detailed in three articles to be published in the Diary of Pain and Symptom Management, ranked 81 countries on the quality of their healthcare systems to ensure the physical and mental well-being of end-of-life patients. Only six countries got A grades, while 36 got Ds or Fs.
The results of the survey were published in the Pain and Symptom Management Diary last month, and further details can be found on a website created by the Link Center for Palliative Care, part of Duke-NUS Medical School in Singapore.
“Society should also be judged on how people die,” says Eric Finkelstein, a palliative care expert and professor at Duke-NUS and the Duke Global Health Institute in Durham, North Carolina, who led the study. . “Many people in both developed and developing countries die very badly – not in the place of their choice, without dignity or compassion, with limited understanding of their disease, having spent much of their savings, and often with regret about their treatment journey.These things are very common.
To compile the rankings, Finkelstein and his colleagues surveyed more than 1,200 caregivers from multiple countries to identify what is most important to end-of-life patients. They then asked 181 palliative care experts from around the world to rate their countries’ healthcare systems on 13 weighted factors that people cited most often, including good pain management and comfort, having a clean and safe space, be treated with kindness and treatments that address quality of life, rather than simply prolonging life.
The UK was ranked highest in the study, followed by Ireland, Taiwan, Australia, South Korea and Costa Rica, all of which received A grades. earned a C, ranking 43rd of 81 countries.
At the bottom of the ranking were 20 countries with failing grades, many of which are low- and middle-income countries with fewer health resources than the top-scoring countries.
“Perhaps the main takeaway from this important exercise is that most people in the world die badly – many without treatment at all and many through often futile overtreatment that increases suffering,” says healthcare expert Richard Smith. palliatives and former editor of the British Medical Journal. He and Finkelstein also serve on the Lancet Commission on the Value of Death, a global panel of palliative care experts who are expected to issue recommendations for improving end-of-life care later this year.
It’s no coincidence that most of the survey’s top scorers are wealthy countries with well-funded health systems, while low- and middle-income countries fare worse, says Stephen Connor, director executive of the Worldwide Hospice Palliative Care Alliance and one of the study co. -authors. “The overwhelming need for palliative care is in low- and middle-income countries, where less than a third of services exist,” he notes.
But both Connor and Finkelstein point to the United States’ intermediate ranking as proof that money doesn’t always guarantee attention to end-of-life care. In the United States, he says, resources are often invested in last-ditch efforts to prolong life, rather than measures to ensure comfort and quality of life in a patient’s final days.
“We’re spending so much money to help people live longer, but we’re not spending enough money to help people die better,” says Finkelstein, who is also director of the Lien Center for Palliative Care at Duke- NUS. The research was funded by the Lien Foundation, a Singapore-based non-profit organization that focuses on improving quality of life.
The harrowing stories of COVID-19 deaths, when healthcare workers were often the only people allowed to comfort the dying, should bring renewed attention to end-of-life care, Finkelstein says.
“Generally, people don’t talk about death. COVID has made it less taboo. We have an opportunity to continue this discussion and not only help COVID patients, but help everyone have a better end-of-life experience,” he said.
Finkelstein and his colleagues hope the country rankings will spur policymakers to act to improve conditions for dying patients, such as easing restrictions on painkillers given to comfort those at the end of life.
But people don’t necessarily need to wait for policy change to take action to ensure a better end-of-life experience, Finkelstein says. He advises people of any age or health condition to make an end-of-life plan and discuss it with family and friends.
“Make an advanced care plan or at least express your wishes to friends and family,” he says. ” Do not wait. By the time you get sick, it may be too late and people may not know what you want.
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