Five Questions With…Professor Felicia Knaul

What is the principle conclusion of the report?

The Lancet Commission on Global Access to Palliative Care and Pain Relief was formed to unmask and understand the global burden of suffering and how access to palliative care, the improvement of life quality for patients and their families as they face life-limiting and life-threatening diseases, must be expanded to alleviate unnecessary suffering. In order to accomplish this, the Commission developed a new framework to measure the global burden of physical and psychological suffering associated with disease and injury through a Serious Health-Related Suffering (SHS) metric.

The Report uncovered one of the greatest inequities of global health today – a staggering and largely ignored pain crisis. More than 61 million people, including more than 5 million children, experience SHS each year that can be alleviated by palliative care, but unfortunately, we estimated that at least 80% of those experiencing SHS live in low- and middle- income countries where access to basic palliative care and pain relief is severely lacking or unavailable.

Immediate-release oral and injectable morphine, an inexpensive and effective medication, is critical to palliative care and to the alleviation of pain and suffering associated with other conditions and medical interventions, yet the majority of countries lack access. This has resulted in a global pain divide, what the Commission considers the core of the “access abyss”, where the poorest half of the world’s population live in countries with less than 1% of the distributed opioid (in morphine-equivalent) that is necessary to alleviate avoidable pain and suffering.

The Report, co-authored by 61 global experts from 25 countries and co-chaired by myself and Dr. Paul Farmer, titled, “Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage,” offers strategies for national and global health systems to integrate palliative care into Universal Health Care (UHC) efforts and ensure access for all by 2030 in line with Sustainable Development Goal

With the UK’s launch of the Lancet Commission Report: “Alleviating the access abyss in palliative care and pain relief – an imperative of universal health coverage” just a couple of weeks ago, what are your thoughts on the UK’s role in furthering palliative care?

The UK launch of the Report brought together many key leaders for palliative care and ignited a sense of urgency and commitment to elevate patient-centered care in the UK, Europe, the Commonwealth, and the world.

The UK is one of a few countries leading the way on pursuing a balanced approach to maximize access to morphine and pain relief medications, while minimizing the risk of non-medical use. However, the UK still has work to do to fully integrate palliative care into all levels of the health system, providing care throughout the disease cycle and throughout a person’s life course – for all people regardless of income or geographic location. This is especially true for cancer, where palliative and supportive care should be integrated at the time of diagnosis, and not just siloed into end-of-life care.

Globally, the UK has a very important role to play as a leader in global collective action for increased access to palliative care and pain relief medication. as a part of UHC, especially in low- and middle- income countries (LMICs). Building off a strong history of pioneering work in hospice care including the work of Dame Cicely Saunders, the UK can lead the way developing models that can enable better and more equitable access to palliative care in LMICs. Special importance must be placed on identifying ways to strengthen human resources for palliative care, and in this effort the UK can both drive capacity-building and education for physicians, nurses and all other health professionals.

Finally, we call upon UK researchers and funding institutions to assist with the production of global knowledge-related goods, such as guidelines and indicators, to assist with monitoring progress towards universal palliative care.

What are the three most pressing issues we need to tackle to further palliative care and the attention provided to it?

The first and obvious issue is that most people do not have adequate access to essential palliative care and pain relief services. The most straight forward and immediate step that countries can take is to publicly finance an Essential Package of Palliative Care and Pain Relief Health Services, defined in Commission Report. The package includes lowest cost medicines, equipment, and human resources required for the health services that any health system should be able to provide at all levels of care. To achieve true integration of palliative care into a health system, all medical personal must be trained in palliative care and pain relief with a recognized specialist training for palliative care.

The second issue is one that is known as opiophobia, or the prejudice and misinformation on medical use of opioids. To reduce the effects of this unwarranted bias against opioids for medical needs, the global health community must collectively act in solidarity towards achieving universal coverage of palliative care and pain relief by facilitating effective access to essential medicines, while implementing measures to prevent non-medical use.

Finally, we still do not have enough tools in place to effectively monitor progress towards alleviating the burden of pain and other types of suffering. We need better metrics and evidence to assist with priority setting and to adequately measure the global need for palliative care, and we need more tools to assist countries implement policies and programmes for palliative care.

What do you hope will be the main achievement of the commission?

Palliative care is a woefully underfunded and neglected component of health care, which fundamentally should be at the core of what a health system provides – assuring people feel cared for and dignified regardless of disease, age, or socioeconomic status.

To reduce the global burden of unnecessary suffering, we hope to see countries integrate national palliative care plans into their health systems to more effectively deliver palliative care and pain relief services. Ultimately, our greatest hope is that this report can contribute to a paradigm shift that increases the efficacy of modern medicine, and reclaims the value placed upon health care that is patient-centered, grounded in dignity, and concerned with life quality as well as longevity.

Reducing the burden of suffering through palliative care is a global health and equity imperative, and it can be achieved through tangible and actionable steps at the local, national, regional, and international levels. We established an Implementation Working Group that is striving for a pain free world through the following four streams of work:

1. Conducting research to develop monitoring frameworks and public accountability tools for use by countries and global governance institutions;
2. Advocating and building awareness to translate and disseminate the knowledge generated by the Commission, especially in LMICs
3. Supporting in-country implementation through training and capacity building as a means to catalyze national planning for palliative care and pain relief; and
4. Fostering global collective action to forge linkages between the palliative care community and other synergistic movements like NCDs, SDGs, UHC.

Is there a personal story that you came across during the process that illustrates exactly why, for you, palliative care and its improvement is so crucial?

Part of what motivated me to Chair the Commission of Global Access to Palliative Care and Pain Relief was my own personal experience with what it means to have inadequate access to pain relief.

In the spring of my senior year of high school, with graduation fast approaching, I was spending all of my available time visiting my father at Mt. Sinai Hospital in Toronto. He was in his final weeks of life, approaching death in a state of agony from stomach cancer. Desperate to help him, I repeatedly requested the medical team for more morphine until finally they acquiesced and gave him enough medication so that he was able to die in peace and without pain. What would I have done to help my father had they continued to refuse him morphine? Looking back on those moments of witnessing my father’s sheer pain and torment, I shudder at the thought.

Years later, as a mother of two young girls, I experienced desperation of my own. I remember vividly the agony of awakening from a unilateral mastectomy in a bed in one of the best private hospitals in Mexico City. The pain of breathing was excruciating and even with some pain medication, I preferred to suffocate than to move my chest wall. I begged for more pain medication and although it took perhaps 20 minutes for the physician to arrive, it seemed to me an eternity adrift in a sea of suffering. I was blessed with access. The vast majority of the world, likely including the women across the street at the public hospital who awoke from a mastectomy that same day, go without.

I knew in those instances just as clearly as I know now, no person should have to face death in excruciating and avoidable suffering, and no family member should shoulder the personal responsibility to alleviate their loved one’s agony. This is the unnecessary trauma I want to end, and this is the cause that the international palliative care community is charged with – to reduce avoidable suffering in our world through the expansion of palliative care and pain relief.

Felicia Marie Knaul: Director, Institute for Advanced Study of the Americas and Professor, Miller School of Medicine, University of Miami; Chair, Lancet Commission on Global Access to Palliative Care and Pain Relief