The 18-year-old girl spent the night of her high school prom in the hospital, comforting and celebrating her father who was dying of stomach cancer.
Only a few weeks later, as he lay in his hospital bed, in agony and suffering and very near death, the girl begged physicians to administer enough medication to manage the pain. But the doctors refused, saying the medicines might kill him. So the girl had two choices: wait to see if more morphine came or do something on her own to relieve her father’s pain.
Fortunately, doctors left additional pain medication by his bedside, and the girl administered a dose to her father.
For millions of dying and suffering people around the world, however, the morphine never comes, even though the cost of this essential pain-alleviation medicine is minimal.
Today, that 18-year-old girl is a University of Miami health economist, and Thursday on that institution’s Coral Gables campus, she opened a two-day symposium that addressed the global problem of the lack of access to palliative care, which focuses on relieving the discomfort, pain, and physical and mental stress of terminal illness.
“Imagine your final months, weeks, and days of life. Put yourself there, and like most, you would probably hope to be free of pain,” Felicia Marie Knaul, professor of public health sciences at UM’s Miller School of Medicine, said Thursday as she kicked off the Global Launch Symposium of The Lancet Commission Report: Alleviating the Access Abyss in Palliative Care—an imperative of universal health coverage.
“Now imagine a scenario where you have to face those painful days with no access to palliative care that might be able to relieve your pain and suffering,” Knaul said. “This is the reality for the vast majority of people who inhabit our world, particularly the poor. And that’s the basis of our [Lancet Commission] report.”
Published in the world’s leading medication journal, The Lancet, and described as “landmark,” the report was led by the University of Miami, working with Harvard University. It is authored by a global commission chaired by Knaul, who is also director of UM’s Institute for Advanced Study of the Americas, and coauthored by UM President Julio Frenk, alongside several other health leaders from the University of Miami.
The report found that tens of millions of people who die in severe physical and psychological pain each year could have an easier death if an essential package of palliative care, which includes immediate-release, oral, and injectable morphine, were made available by health systems around the world.
Yet, palliative care and pain relief “have been barely an after-thought,” Richard Horton, editor in chief of The Lancet, said at Thursday’s symposium. “We need to understand why that feeling prevails today.”
The access abyss to palliative care, said Horton, is the most glaring inequity in global health today. “Why is it that the health community has ignored palliative care and pain relief? Why has universal health coverage failed to embrace it? Why have donors from foundations neglected it?” Horton asked.
One possible reason is the stigma attached to it.
“Too often in the medical world, it seems palliative care and pain relief are seen as indicators of a shameful failure—a failure of modern medicine and the biomedical research enterprise,” Horton said. “But palliative care is not indicative of failure. It’s absolutely essential to any notion of human dignity.” The commission headed by Knaul, he explained, makes a powerful case for its centrality.
Among the commission’s key findings, which were disclosed to a conference audience of about 200 people, many of them healthcare providers:
- Sixty-one million people worldwide experience serious health-related suffering (SHS) each year for a total of at least 6 billion suffering days.
- Over 80 percent of those people live in low- and middle-income countries (LMICs) where access to palliative care is severely lacking.
- Patients in LMICs account for at least 95 percent of the need for palliative care associated with HIV disease, premature birth and birth trauma, tuberculosis, and malnutrition.
- Each year, nearly 2.5 million children die needing palliative care and pain relief. In low-income countries, they account for over 30 percent of SHS deaths.
Despite inexpensive and effective solutions being available, the vast majority – 170 – of the world´s countries still lack sufficient pain-relief medications such as oral and injectable morphine, and 50 percent of the world’s population receives less than 1 percent of the distributed opioid morphine equivalent.
“This commission calls on all of us to take pain and suffering more serious,” Horton said.
For what it costs to purchase a latte from a popular coffee shop, an essential package of palliative care could be administered in LMICs per adult patient. For children, the cost is even less—just over $1 million, or 63 cents per child.
As such, the commission’s goal is to make a palliative care package of pain-relieving and palliative care medicines, equipment and caregiving available to all by the year 2030. UM will continue to lead these efforts with a particular focus on the Americas.
“It’s easy to say give me a million dollars, and children will no longer suffer. But it’s not as simple as that,” Knaul said, going on to explain that strengthening global health systems is critical to ensuring that palliative care is accessible to all who need it.
“Global collective action” is needed to address the problem, or else palliative care will continue to be ignored, said Rifat Atun, professor of global health systems at the Harvard T.H. Chan School of Public Health and a Lancet commissioner.
The fact that global health leaders and policy experts have brought the issue of better access to palliative care to the forefront is important, said Kathleen Foley, professor emeritus of neurology, neuroscience and clinical pharmacology at Cornell University’s Weill Medical College.
“There’s evidence to show palliative care works,” Foley said. “Evidence to show that it improves quality of life. Evidence to demonstrate how it improves mood and reduces depression.”
In his conference closing remarks delivered Friday, Horton told healthcare providers that “dignity with dying should be your mantra.”
“But it’s not. It’s the mantra of those who advocate very strongly a physician-assisted-death argument,” he said. “And so what happens is you are presented as the obstructive, conservative, anti-dignity force in health. This to me is a crazy situation. We have to reclaim the idea that you stand for dignity.”
The symposium should have an afterlife, said the Lancet editor in chief, detailing future actions to which he and Knaul are committed, which include publishing a follow-up report of a list of 194 countries and a measure of their serious health-related suffering and producing an annual study on global suffering and the contributions of the world community in addressing the issue. “That will be the process of keeping this issue in everybody’s mind, every year, at a fixed time,” said Horton, who also called for building partnerships with other organizations.
It is the Miami DECLARAcTION, a document that commits healthcare professionals to closing the access abyss to palliative care and pain relief, Horton said he has highest hopes for. “This little document and the words in it can change the future for the way we think about suffering and our response to it,” Horton said. “This is our manifesto, and it’s our task to proselytize it.”
