Opinion: Governments, not philanthropy, should fund palliative care

For more than 18 months, Akinyi, a Kenyan patient suffering from kidney failure, has been treated in a private hospital in Nairobi for dialysis. This treatment has cost her 60,000 Kenyan shillings, or more than $500, per month — something she can barely afford. When she first received her diagnosis, she abandoned hope and initially refused treatment. But since then, she has decided to battle her illness with life-saving support from a charitably funded hospice that has provided her with the medication she needs for free.

“Death is inevitable,” she said during an interview with a Kenyan news agency. “But it is not a must that I die of kidney failure or die in pain and suffering.”

Worldwide, philanthropy has long been a bedrock when it comes to funding care for people battling terminal illness or approaching the end of life. In the 1960s, private donations were behind the emergence of hospice and palliative care in the United Kingdom, and ever since, charity has been the primary source of funding for palliative care in much of the world.

However, it was the original hospice founders’ intention for the state to take over this responsibility. When one of our organizations, the Open Society Foundations, started funding palliative care in Africa, the former Soviet Union, and elsewhere 20 years ago, it was with the intention of laying the foundation for governments to eventually step in to fund palliative care through health insurance or social security schemes.

Now, 70 years later, it is long past time for governments — not philanthropy — to fund palliative care properly and ensure that it is available to all who need it.

That’s not to say that palliative care hasn’t made significant strides with private support. Hundreds of thousands of people with cancer and other incurable illnesses worldwide now have access to services that prevent needless suffering from severe pain and other symptoms.

Now, many governments recognize palliative care as an essential health service, have incorporated it into health policies and medical education, and taken steps to ensure essential medicines, such as morphine, are available and accessible. Yet, public spending on palliative care services remains grossly inadequate, resulting in many providers continuing to rely on philanthropic funds.

This situation is not sustainable. As people live longer and chronic diseases account for a greater share of the health care burden than infectious diseases or heart attacks, the need for palliative care will grow rapidly worldwide. Palliative care begins from the moment of diagnosis of a life-limiting illness, meaning it can go on for years in combination with curative interventions.

Some experts estimate that need for palliative care will increase by 87% by 2060, with low- and middle-income countries accounting for 83% of serious health-related suffering. Philanthropy can play a critical role in palliative care development but can’t replace the state in ensuring that palliative care is available in every community and affordable to all who need it.

The status quo also perpetuates existing inequalities. Using figures from 2015, the Lancet Commission reported that more than 80% of the 61 million people who suffered serious health-related suffering in an end-of-life context lived in low- and middle-income countries.

Current estimates suggest that nearly 57 million people need palliative care each year globally; yet the vast majority, 88%, cannot access it. A charitable funding model, which reflects the idiosyncrasies and inevitable geographic biases of philanthropy, contributes to this inequity. Within low- and middle-income countries such as Bangladesh and India, private donors tend to favor certain areas, resulting in palliative care being widely available in those places while other communities are neglected.

The scattershot availability of services that exists in parallel to the public health care system can be easily disrupted when philanthropies change their priorities or withdraw their funding. This can lead to the collapse of services, lost investment, and, ultimately, avoidable suffering for patients and families. Even where services remain in place after charitable funding dries up, they often fail to meet the need.

Governments, by contrast, can build palliative care into the health care systems that they already finance, directly or indirectly. In addition to being more equitable, this would reduce cost through economies of scale and by integrating palliative care into existing systems.

In Catalonia, Spain, publicly-funded palliative care was integrated into primary health care in the 1990s, resulting in net-cost savings due to less individuals needing emergency or acute care.

In Panama, the government has made significant progress integrating palliative care into its health care system through public hospitals and social security.

After Kenya’s Health Ministry mandated public provincial hospitals to offer palliative care services in 2010, the Kenyan Hospice and Palliative Care Association provided training and support to the sector, contributing to a dramatically improved access as the number of health care workers trained to provide palliative services increased.

Today, 60 public hospitals have integrated palliative care into their services. As Kenya moves forward on universal health coverage, government officials have also promised that palliative care will be part of the country’s essential care package, although this pledge has not yet been implemented.

In 2021, Uganda’s Health Ministry similarly mandated public hospitals to offer palliative care, although it is not yet clear how this mandate will be implemented. Donations currently makeup 93% of funding for palliative care services in the country.

Because those who require palliative care are so often in a poor position to self-advocate, progress can be slow. Moreover, success in health interventions is so often measured in terms of lives saved and disability and illness avoided — metrics that are ill-suited when it comes to alleviating end-of-life suffering.

Despite this, over decades, philanthropic investments have laid the foundation for universal palliative care around the world, helping to develop cost-effective models of care and train palliative care workers. It is time for governments to take these achievements forward and ensure that palliative care is available to every individual and family that needs it.