Over the past 24 months, images of patients dying alone, isolated from their loved ones shocked the world with their grimness. But even before SARS-CoV-2 struck, harrowing deaths were all too common an experience, a new survey of end-of-life care shows.
“Many individuals in both the developed and developing world die very badly—not at their place of choice, without dignity, or compassion, with a limited understanding about their illness, after spending down much of their savings, and often with regret about their course of treatment. These experiences are very common, yet avoidable,” said Professor Eric Finkelstein, a palliative care expert with Duke-NUS and the Duke Global Health Institute.
To assess these experiences and identify specific areas for improvement, an international team of researchers led by Finkelstein embarked on a large-scale project to rank countries and regions on how well their health systems provide for the physical and mental wellbeing of patients at the end of life.
Only six countries earned an A grade, while 36 earned Ds or Fs.
Countries and regions were ranked based on their overall score to questions on how well their health systems provide for the physical and mental wellbeing of patients at the end of life
The United Kingdom earned the highest ranking, followed by Ireland, Taiwan, Australia, South Korea and Costa Rica, which all earned A grades. Singapore received a B, ranking 23rd among the countries surveyed, while the United States earned a C, coming in 43rd spot.
At the bottom of the rankings were 20 countries that earned failing grades, many of which are low- or middle-income countries with fewer health resources than the top-rated countries.
“Perhaps the main conclusion from this important exercise is that most people in the world die badly—many through no treatment at all and many through excessive often futile treatment that increases suffering,” said Dr Richard Smith, a former editor of the British Medical Journal, who is serving with Finkelstein 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.
Finkelstein and colleagues from the Lien Centre for Palliative Care at Duke-NUS and the Duke Global Health Institute along with international collaborators developed the ranking by first identifying the key factors that are used to evaluate the performance of end-of-life care. After analysing the available evidence, they determined that these factors could be broadly grouped into seven categories, ranging from laws covering end-of-life care to the quality of communication between the system and patients and their caregivers.
Together with palliative care experts, they refined these broad categories into 13 distinct factors and asked more than 1,200 recently bereaved caregivers from several countries to rank them by importance. Proper pain management, having a clean and safe space and being treated with kindness emerged as most important, even more important than access to quality-of-life extending treatments.
They then asked 181 palliative care experts across the globe to grade their countries’ health systems using the same 13 factors which were weighted according to the importance ascribed to them by the caregivers. All three papers were published in the Journal of Pain and Symptom Management.
“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 fared worse,” said Dr Stephen Connor, Executive Director of the Worldwide Hospice Palliative Care Alliance and one of the study’s co-authors. “The overwhelming need for palliative care is in low and middle-income countries, where less than a third of services exist.”
But Connor and Finkelstein both point to the US’ middling ranking as proof that money doesn’t always guarantee attention to end-of-life care. In the US, resources are often invested in last-ditch efforts to extend life, rather than measures to ensure comfort and quality of life during a patient’s final days.
“We spend billions trying to get people to live longer, but very little in comparison helping people die better,” said Finkelstein, who is also the Director of the Lien Centre for Palliative Care. The research was funded by the Lien Foundation, a Singapore-based nonprofit focused on improving quality of life.
The harrowing stories of COVID-19 deaths, when nurses or healthcare workers were often the only people allowed to comfort the dying, has temporarily moved end-of-life care into the spotlight. Connor noted, “Generally, people don’t talk about death. COVID has made it less taboo. We have an opportunity to continue this discussion and not just help COVID patients, but to help everyone have a better end-of-life experience.”
Finkelstein and colleagues hope the country rankings spur action from policymakers to improve conditions for dying patients, such as loosening restrictions on pain medications given to comfort those at the end of life.
But people don’t need to wait for policy change to take steps to ensure a better end-of-life experience. He advises that people develop an advanced care plan or at least express their wishes to friends and family.
“Don’t wait,” urged Finkelstein. “By the time you fall ill, it may be too late and others may not know what you want.”