Twelve-year-old Godfrey was lonely, angry and depressed when he was admitted to hospital with heart failure and tuberculosis. Godfrey had been living with HIV since birth. His parents died long ago.
But at the Sunflower Children’s Hospice in South Africa, health and palliative care providers gave Godfrey the support he needed to improve his quality of life and preserve his dignity up until his tragically early death.
“When Godfrey arrived at the Sunflower Children’s Hospice, he was on oxygen most of the day, emaciated, depressed and angry,” recalls Dr Joan Marston, Chief Executive for the International Children’s Palliative Care Network, which is closely linked to the hospice. “But the hospice ensured his symptoms were well managed. He was able to express his feelings, attend school, draw pictures of his favourite things, and receive spiritual and emotional support.”
“Palliative care,” adds Dr Marston, “enabled Godfrey to no longer be fearful of death and to die peacefully and with dignity.”
40 million need palliative care
Each year an estimated 40 million people worldwide require palliative care, including 2.1 million children like Godfrey. Various conditions can warrant palliative care including HIV/AIDS, cardiovascular diseases, cancer, and dementia. According to WHO, less than 14% of those needing palliative care at the end of life currently receive it.
WHO is working with governments to expand the palliative care services they provide. The World Health Assembly has recognized that palliative care is a core component of integrated, people-centred health services, not an optional extra, and called on countries to strengthen services and ensure the availability of essential medicines, especially opioid analgesics to relieve pain and respiratory distress.
“Palliative care must be available to all people, of all ages, with all diseases,” says Dr Belinda Loring, from WHO’s Department for Management of Noncommunicable Diseases, Disability, Violence and Injury Prevention.
There are real health gains for health systems – and especially patients – through ensuring the delivery of appropriate palliative care.
Palliative care makes sense for health systems
“Evidence shows that early access to palliative care reduces costs for health systems, by avoiding unnecessary emergency department visits, and hospitalizations,” says Dr Marie-Charlotte Bouesseau, from WHO’s Department of Service Delivery and Safety.
The challenges of life-threatening illnesses go beyond patients, extending to their families and support networks. WHO acknowledges that families are an important part of the network providing care, and also require services such as social support and bereavement counseling.
One such example is 60-year-old Maria, from Mangaung in South Africa, and her niece Lerato, 24, who was born with HIV and developed kidney failure at the age of 19 years. Today, Lerato (not her real name) receives the medical care she needs, including dialysis 3 times a week. And, importantly, the social and spiritual support required ensures Lerato lives her life with the dignity she deserves, and her aunt is backed by a strong network of carers.
“I don’t know how we would have cared for Lerato for all these years without palliative care,” Maria says.
Policy action needed
Despite the cases of Godfrey and Lerato, many people with incurable illnesses fail to receive the health care they need, and this is often because of a lack of government policies and laws to address the issue of palliative care, according to Dr Emmanuel Luyirika, the Executive Director of the African Palliative Care Association.
“But still, many countries lack policy frameworks that integrate palliative care services into existing health systems,” he adds. “Such implementation is essential to minimize suffering worldwide.”
WHO’s work to strengthen palliative care also includes promoting increased access, addressing ethical issues, encouraging resources for programmes and research in low-resource countries, and highlighting effective models of palliative care in low-income and middle-income settings.