Palliative Care: A Global Imperative

by Virginia LeBaron¹

Dr. Pradeep Vaidya with patient and family in Hospice Nepal.

As the global cancer burden increases, the need for quality symptom management and end of life care is paramount. This need is particularly critical in resource-constrained countries, where the majority of patients, over 70%, present with late-stage illness and have few, if any, viable treatment options.

Of the 58 million people who die each year, an estimated 33 million would benefit from access to palliative care. Unfortunately, only a small percentage of patients worldwide actually receive this type of health care. When family support is considered, the estimated number that could benefit from palliative care services increases to 100 million.

Currently, 7 million people die each year from cancer, and this number is expected to increase exponentially over the coming decades. By 2020, more than 16 million people will be diagnosed with cancer per year, and 10 million will die of the disease. It is expected that the global cancer burden will increasingly shift from the developed to the developing world, straining already limited resources.

Palliative care is both a philosophy of care and a structured delivery of services that focuses on helping patients and families cope with life-limiting illness. Through interdisciplinary collaboration and a holistic approach, palliative care strives to address and manage any source of distress for the patient or family—whether it be physical, emotional, or spiritual. Those trained in palliative care view the patient and family (or other significant caregivers) as the unit of care, and recognize the multiple and complex ways serious illness impacts all dimensions of a person’s life—from the existential to the practical. Ultimately, palliative care strives to optimize the patient’s “quality of life,” recognizing that this concept is uniquely defined by the individual and may change and evolve as an illness progresses.

Palliative care is often mistakenly thought of solely as end of life care. While applying the principles of palliative care to dying patients is clearly important, palliative care can — and should — be integrated along the disease trajectory. Ideally, palliative care support begins at the time of a difficult diagnosis. Palliative care and life-prolonging therapies are not mutually exclusive, and to think otherwise does a great disservice to patients and families (Figure 1).

Figure 1. The integration of Palliative Care during illness. Ferris FD, Balfour HM, Bowen K, Farley J, Hardwick M, lamontagne C, Lundy M, Syme A, West P. A Model to Guide Hospice Palliative Care. Ottawa, ON: Canadian Palliative Care Association, 2002. Published with permission of the CHPCA.

The delivery of palliative care in developing countries can be hindered by limited access to opioids and other symptom-relieving medications, rural dislocation of a population, competing health priorities, war or political instability, and limited access to health care services. The INCTR Palliative Access Program (PAX) is working collaboratively to address these challenges.

All patients, and perhaps most especially those at the end of life, have a right to optimal pain and symptom control. To achieve this standard, the PAX program is dedicated to decreasing the global suffering caused by cancer by improving access to palliative care services in developing countries for children and adults with advanced illness. In accordance with the World Health Organization’s Foundational Principles (Figure 2), the PAX program interfaces with government policy makers to enhance opioid availability, advocates for palliative care within regional and national health agendas, and facilitates educational initiatives to train multidisciplinary health care providers in palliative care.

Figure 2. An illustration of the World Health Organization (WHO) Foundational Measures to implement effective cancer pain relief programs. Published with permission of WHO.

Children in the developing world are significantly more likely to die of a cancer than children in developed countries; the five-year survival rates for children with cancer in developing countries is less than 50% (and may be much worse, since available data comes from the more advanced centers and some children may have no access to effective care), as compared to 70-80% in the developed world. Thus, addressing the unique needs of pediatric patients with terminal illness is, sadly, a particularly important component of palliative care services in developing countries. Working to ensure that pain control and expert symptom management is available to all children with advanced cancer is an essential aspect of the PAX program.

This first special issue of the INCTR newsletter is dedicated exclusively to the work of the PAX program, and highlights exciting projects and initiatives around the world. Dynamic palliative care leaders in India, Nepal and Tanzania are partnering with INCTR to improve access to palliative care, to increase training opportunities, and to liaise with policy makers. New collaborations in Central and South America are being explored; fruitful partnerships with the Programme of Action for Cancer Therapy (PACT) of the International Atomic Energy Agency (IAEA) and the American Cancer Society (ACS) have been forged; the 3rd edition of INCTR’s Clinical Guidelines for Palliative Care has been published and is available on the INCTR portal as well as in pocket-sized book format; and the use of telemedicine technology has been expanded to enhance distance learning and mentorship.

In addition to providing information about the INCTR PAX program, this edition of NETWORK addresses key issues of palliative care delivery in developing countries. It is hoped that readers will gain a deeper appreciation for the global imperative of ensuring access to palliative care for all those affected by cancer throughout the developing world.

¹ Nurse Consultant, INCTR PAX Program