I am delighted to use this week’s blog to introduce the Centre’s new Manager, Mark Steedman. After studying bioengineering and completing a PhD in the San Francisco Bay Area and a two-year postdoctoral research fellowship in London, Mark has spent the past four years analysing global health policy. His recent work has involved research into topics such as palliative and end-of-life care, maternal and newborn health, design in healthcare and electronic health records. His blog this week focusses on his background researching innovative approaches to improving access to palliative and end-of-life care, a topic we explored recently in our report Vital Signs: how to deliver better healthcare across Europe, in 2014 in our report Transforming care at the end-of-life and in 2013 in the report Dying Healed: transforming end-of-life care through innovation, which Mark and I co-authored for the 2013 World Innovation Summit for Health.
My first visit to a hospice
I visited a hospice for the first time in 2013 as I began researching the often neglected area of palliative and end-of-life care. I was out of my comfort zone, as up until then I had always worked in a laboratory setting. The materials, devices and experimental tools I had worked with every day as a bioengineer were inanimate objects that displayed no human emotion. Speaking to hospice patients was the opposite. For a few hours that afternoon, I shadowed a palliative care physician and interacted with several hospice patients, carers and family members, entranced by an experience that would shape my career for the next several years.
The first thing I learned about dying is that for every individual it is different – the wishes and desires of one person are unique to that individual. While one patient may struggle to accept a diagnosis or current state of health, another may only care about what happens after death – to a family member, personal finances or about other practical matters. Adapting to these differences and determining the best course of action or treatment for each patient is one of the biggest challenges a palliative care physician faces, and this was something I witnessed first-hand.
Global access to end-of-life care
Over the next few months, as I researched and improved my own knowledge and understanding about the global state of end-of-life care, I discovered some sobering facts. Approximately 55 million people die every year, but access to care at the end-of-life, particularly to pain control, is grossly inequitable around the world.1 The best data we have for pain control is through the use of morphine, and the discrepancy between high-income and low-income countries is staggering. Research suggests that 94 per cent of the world’s morphine is consumed in high-income countries, which account for only 15 per cent of the world’s population.2
Furthermore, the average amount of oral morphine (or equivalents) consumed by a patient suffering from cancer or AIDS in the richest 10% of countries is 99,000 mg. In the poorest 10 per cent of countries, this number is only 200 mg.3 A lack of resources and skilled healthcare staff alongside fear of illicit drug use have led to overly restrictive regulations such as dose limits, special permissions for prescribing and receiving opioids and other barriers, which account for this discrepancy.4 Overcoming these barriers, and integrating palliative and end-of-life care into the international campaign for universal health coverage has become a central theme of the global health agenda, as exemplified by a World Health Assembly resolution in 2014.5
Witnessing end-of-life care in a global context
My research on access to morphine and other aspects of end-of-life care was put into context when I visited a palliative care ward in a hospital in northeast Thailand in early 2014. Staffed by one physician and five nurses, the ward was constantly at capacity and had no access to morphine. As most of their patients were facing advanced stage cancer, the inability to easily relieve their patients’ pain was a constant challenge. However, all patients were treated with the dignity they deserved, local traditions were respected and staff were actively involved in seeking out new training opportunities and other ways to best treat their patients.
Adopting innovative approaches to end-of-life care
The need for innovative approaches to end-of-life care has gained traction around the world, with some low- and middle-income countries leading the way. Nigeria has had some success introducing an inexpensive version of oral morphine at a major hospital, overcoming years of roadblocks.6 Uganda has been able to establish a national oral morphine production programme, despite its high levels of poverty.7 Early success in the state of Kerala, India, in distributing palliative care through a community-based model eventually led India’s parliament to approve changes to the Narcotic Drugs and Psychotropic Substances Act of 1985 that had resulted in a 97 per cent decrease in the use of morphine across the country.8,9 Additionally, numerous countries have piloted innovative education and training programmes, targeting everyone from medical students through to experienced doctors and nurses.10
These are just a few of the numerous examples of innovative approaches creating better access to end-of-life care around the world. However, these are small steps in a long journey to equity in access to care at the end-of-life. As I begin my work with the Centre for Health Solutions, I look forward to finding synergies linking my background in end-of-life care and other healthcare challenges to the Centre’s remit to generate insight and thought leadership across the life sciences and healthcare industry.
1 Worldwide Palliative Care Alliance and WHO. Global atlas of palliative care at the end of life. http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf; January, 2014.
2 Knaul, FM, Farmer, PE, Bhadelia, A, Berman, P, Horton, R. Closing the divide: the Harvard Global Equity Initiative-Lancet Commission on global access to pain control and palliative care. The Lancet. 2015; 386: 9995: 722-724.
3 Knaul, FM, Adami, HO, Adebamowo, C, Arreola-Ornelas, H, Berger, AJ, and Bhadelia, A. The global cancer divide: an equity imperative. in: FM Knaul, R Gralow, R Atun, A Bhadelia (Eds.) Closing the cancer divide: an equity imperative. Harvard Global Equity Initiative, Cambridge, MA; 2012: 29–60.
4 Global Opioid Policy Initiative: Regulatory Barriers. http://www.esmo.org/Policy/Global-Opioid-Policy-Initiative/Infographics/Regulatory-Barriers.
5 WHO. Resolution WHA 67/19. Strengthening of palliative care as a component of comprehensive care throughout the life course. http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf; May, 2014.
6 Nigeria: Cost of oral morphine at the National Hospital Abuja reduced by 81%. http://www.ehospice.com/Default/tabid/10686/ArticleId/5884.
7 Merriman, A and Harding, R. Pain control in the African context: the Ugandan introduction of affordable morphine to relieve suffering at the end of life. Philos Ethics Humanit Med. 2010; 5:10.
8 Kumar, SK. Kerala, India: A regional community-based palliative care model. J Pain Symp Manage. 2007; 33: 623-627.
9 Kmietowicz, Z. Indian parliament votes to increase access to morphine. BMJ. 2014; 348: g1744
10 Steedman, MR, Hughes-Hallett, T, Knaul, FM, Knuth, A, Shamieh, O, and Darzi, A. Innovation can improve and expand aspects of end-of-life care in low- and middle-income countries. Health Aff (Millwood). 2014; 33: 1612–1619.