Palliative care improves the quality of life for patients (adults and children) with life-threatening illness. It prevents and relieves suffering through the early identification and correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual. Early delivery of palliative care can also reduce unnecessary hospital admissions and the use of health services.
“The bulk of my global health research and focus is palliative care oriented, and it’s something that a lot of people don’t know much about,” said Alyssa Tilly, MD, an assistant professor of medicine and pediatrics, and member of the Institute for Global Health and Infectious Diseases.
Tilly is the Program Director for UNC’s Hospice and Palliative Medicine Fellowship and Palliative Care Division Leader for the UNC Project-Malawi Cancer Program. She has been traveling to Malawi since her residency in 2015 and helped to establish a Palliative Care Clinic within the Malawi National Cancer Centre in Lilongwe.
“Palliative care is not really a priority area when you think bigger picture about global health, and it’s hard to say we need to be putting funding and policy efforts towards this, when we haven’t yet understood the level of need.”
Global Needs Assessment
In 2018, the Lancet Commission on “Palliative Care and Pain Relief,” published the first report to describe the level of need on a global scale. The Commission reported that nearly half of all deaths worldwide, 25.5 million people, would have benefited from palliative care. However, 80% of these people live in low- and middle-income countries, where access to palliative care is virtually nonexistent or severely limited. Only 8.5% of countries worldwide have achieved what would be considered an advanced integration of palliative care.
“This is a roadmap to help countries think about how they might develop and implement palliative care, including 20 of the most common conditions worldwide that lead to either a life limiting or a life-threatening illness, and the serious health related suffering associated with it.”
Barriers to Palliative Care
“From a global health perspective, a common discussion has been about the cost; however, palliative care is really not that expensive when you think about it. One of the biggest barriers is the lack of access to opioid pain medications.”
High-income countries consume 92% of the world’s opioid supply, while low-income countries have less than 0.1 mg of morphine equivalent per person in need. Tilly says regulations in response to the opioid crisis in the U.S., and fears around opioid use globally, demonstrate how relevant global health is to everyone around the world.
“The level of opioid need is far overshadowed by excessive regulations. In fact, the amount of money that would be needed annually to meet pain relief for people in low-and middle-income countries, for all adults in need, is $145 million, and for kids, $1 million. These numbers are striking in the context of the world’s governments. Collectively, we spend $100 billion every year regulating access to drugs because of the fear related with opioid addiction.”
Another issue is advocacy and awareness. “It’s not like HIV/AIDS, that saw advocates bringing attention and awareness to a deadly disease. Palliative care is not disease specific and those needing care are often not in a condition in which they are able to advocate for themselves.
Tilly adds there are gaps in education and training. She says every health professional needs basic palliative care training.
“I didn’t know what palliative care was until I went to medical school.”
Tilly, together with Head Oncology Research nurse Maria Chikasema and the UNC Project-Malawi Cancer Program, worked alongside the Ministry of Health to establish a dedicated Palliative Care Clinic situated within the National Cancer Hospital in the capital city of Lilongwe. The clinic is staffed by Ministry of Health employees with support from UNC Project Malawi staff, providing palliative care services such as symptom management and counseling.
Evidence Building
Tilly, working closely with Chikasema and other colleagues, recently completed a scoping review that analyzed the success of the state of palliative care in Malawi, a relatively advanced integration of palliative care, in contrast to its limited resources. She says the review can be used as a model for other countries that have limited resources, to think about how they can begin to have more of an advanced integration.
To address the lack of culturally-appropriate measurement tools for cancer patients, Tilly has worked with the UNC Project-Malawi Cancer team to adapt patient-reported outcome measures. This has involved translating tools into local languages and conducting cognitive interviews and psychometric validation to ensure measures resonate within the Malawian context.
More recently, a pilot study has provided a “symptom toolkit” to cancer patients undergoing chemotherapy. This includes education on common side effects, a symptom tracking journal, and pre-packaged medications to help manage issues like nausea, pain, and fatigue at home. The goal is to empower patients and improve their quality of life during treatment, as many face significant barriers accessing care once they return to their rural communities.
Finally, Tilly is actively working with partners to validate a revised global version of the Quality of Dying and Death (QODD) questionnaire at UNC’s inpatient hospice unit as well as at sites in Toronto, Canada, and in Malawi.
“The Quality of Dying and Death questionnaire is the most widely used outcome measure that assesses the quality of dying and death but lacked cross-cultural validity and applicability. Our research group, including Chikasema and other key Malawian palliative medicine providers, revised the QODD to form the new QODD-RGV which is currently undergoing validity testing for use. The clinical experiences of our Malawian colleagues greatly informed the revision to this measure.”
This will be an important step towards better assessing end-of-life experiences across different cultural contexts, as the original tool was developed in high-income settings. And with the rising burden of noncommunicable diseases and some communicable diseases, the global need for palliative care will continue to grow with aging populations. Through her multifaceted work, Tilly is striving to build the evidence base and tools needed to advance palliative care integration in Malawi that can be replicated in other resource-limited settings.