Sometimes called ‘the father of palliative care in India’, Dr M.R. Rajagopal was in Edinburgh this week as guest of honour at a screening of a documentary on the achievements of his own extraordinary life.  Entitled, "Hippocratic: 18 Experiments in Gently Shaking the World", it was hosted by EMMS International.  The rapt audience, who had gathered in Royal College of Physicians, were soon to learn the truth of an introduction that described Dr. Raj as: “passionate, not timid; gentle, but effective.”

Originally from Kerala, in the south of India where he started his pioneering work, he is now the Chairman of one of the world’s largest networks of palliative care provision – Pallium India.  Long time friend of Cairdeas, he has a close personal and working relationship with Cairdeas’ Medical Director, Dr. Mhoira Leng, and Cairdeas recently supported his visit to Uganda as the keynote speaker at their 10th anniversary conference.

Both his sincerity and passion are clear in everything he says and does.  “Pain relief medication isthere,”he told us, “it’s just not getting to those who need it.”

He spoke openly and honestly about the significance of the Hippocratic Oath, and how its principles underpin and drive his work.  He quoted elements of the oath verbatim, wrapping himself in its mantra of care and dedication:“I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.  Above all, I must not play at God.”

Without doubt, access to pain relief medication was highlighted as an enormous issue but so, he told us, was one’s attitude to serving their patients. “We have the power to destroy with a few words, or to lift up with a few words.”   He guarded against the medical profession becoming trapped in their heads and detached from their hearts as he emphasised that the treatment of the person is as important as the treatment of the pain. 

Again and again, he stressed how ‘good’ palliative care must treat the patient with care and respect, not simply treating them as a receptacle and ‘attacking’ a disease.  Human beings, he told us, are much more than just containers of disease.  In a room filled with doctors and nurses he reminded those present from the caring profession that they are in a position of ‘huge privilege’; but one that requires empathy, one that asks you to walk in the shoes of another, one that requires you to understand the suffering of fellow man.

Over the years Dr. Raj has drawn much inspiration from his fellow countryman, Mahatma Gandhi, whom he often quoted.  “Recall the face of the poorest and weakest man you have seen, and ask yourself if this step you contemplate is going to be any use to him.”  This line from Gandhi informs Dr. Raj’s decision making every time as he strives to serve those in the depths of poverty with nothing; a poverty, he told us, which Gandhi called, “the worst form of violence.”

Towards the end of the film, Dr. Raj said very simply: “When I started to work in palliative care, I started to learn about life.”  If you ever need a reminder as to why you are working in palliative care, or why you are supporting the work of those delivering palliative care, please get your hands on this film and watch it.  It will teach you so much about life. 

Day two (10thAugust 2018) of Cairdeas and the Makerere & Mulago Palliative Care Unit’s (MMPCU) 10thanniversary conference was opened by Professor Liz Grant, from the University of Edinburgh.  She began the day by highlighting how partnership work in Kampala has influenced, contributed to, and shaped palliative care globally.  Prof. Liz framed palliative care in the context of the Sustainable Development Goals(SDGs); that collection of 17 global goals established and agreed by the United Nations Development Programme.  She argued that good models of palliative care – such as those being pioneered by Cairdeas and MMPCU - help achieve SDG number three: Good health and wellbeing for people. Dr Grant also suggested that good practice within palliative care is replicable acrosswider health systems, and that the palliative care model in Uganda is an excellent response to the call for universal health care.

Dr. Jackson Amone then described the journey of palliative care for those with a serious or life limiting illness.  He made clear the importance of a palliative approach throughout the course of an illness, but did not skirt the issue of the significant gap, globally, between the need and the availability of palliative care services.  Dr Amone commended Uganda’s Ministry of Health in its commitment to ensure a consistent and reliable supply of free patient morphine.

Ensuring that the right care is available in the right place and at the right time, were elements of a conundrum explored by Dr. Sam Guma.  He stressed the importance of continuum of care and explored factors that affect the delivery of a quality service, including timely referrals and the availability of services.

A discussion on the importance of the spiritual component of palliative care was led by Ivan Odiit Onapito.  Ivan described a study that was undertaken with patients in Mulago Hospital to identify their feelings from diagnosis to treatment.  The study raised several key themes including the importance of listening to the patient and the value of being present.  Ultimately, it made clear the enormous value to be had in listening to patients’ stories.  He concluded that spiritual support is an essential part of palliative care and he made a strong recommendation for ongoing mentorship for spiritual providers in palliative care to help them become better versed and equipped in the palliative approach.

A number of speakers delivered papers on palliative care in relation to specific diseases: Palliative care in end stage renal disease (Dr Peace Bagasha); Integration of palliative care into standard oncology (Dr Henry Ddungu); and Experiences of patients living with heart failure (Dr Elizabeth Namukwaya).  Each concluded that holistic care is essential, and presented evidence that integrating palliative care results in improved outcomes across the board. 

The practice of integrating palliative care was described Dr Nahla Gafer in a set of cases she presented from her work in Sudan. She highlighted how her work is bolstered by an effective programme of training and the partnerships with CairdeasIPCT, MPCU and University of Edinburgh.

Palliative care and mental health, palliative care and refugees, and palliative care and the elderly were three thematic areas addressed respectively by Professor Chitra Ventkateswaran, Vicky Opia, and Dr. Harriet Nankabirwa.  In each presentation, compelling arguments were made to: address the mental health burden evident in palliative care; integrate palliative care into humanitarian emergencies; provide comprehensive geriatric assessment for older patients needing palliative care.

MPCU senior advisor and PcERC chair, Dr. Mhoira Leng, lent her full support to Dr Marcia Glass’s call to continue to establish, strengthen and build on the opportunities emerging from the many partnerships that are in place and have been cemented as a result of the conference.

“What a privilege to share the work of MPCU and our partners.  It is exciting to see all that has been achieved but particularly to hear from those affected by chronic illness such as Helen.  We need to be a voice for the voiceless and ensure we offer care with compassion and quality. As we launch the Palliative care Education and Research Consortium (PcERC) we move forward with the vision of palliative care for all.”

A few weeks on, and it is time to reflect on Cairdeas and the Makerere & Mulago Palliative Care Unit’s (MMPCU) 10thanniversary conference, ‘Building Momentum for Palliative Care’.

Dr Mhoira Leng opened the conference (day one, 9thAugust 2018), setting the scene by reflecting on the Lancet Commission Global Access to Palliative Care and Pain Relief.  Dr Mhoira’s work, and that of her partners, directly responds to the crisis the Lancet Commission have highlighted: that at least 80% of those experiencing serious health-related suffering (SHS), live in low and middle-income countries where access to basic palliative care and pain relief is severely lacking or unavailable.

Professor Scott Murray, from the University of Edinburgh, was optimistic in his address; particularly in relation to what was being achieved in Uganda, saying: “Inspiration is like a deep breath and we should take a deep breath and prepare ourselves to show how Uganda is leading the way in palliative care.”  He recognised Cairdeas and MMPCU’s engagement in a multitude of activities such as research and the development of resources to support the delivery of the palliative care approach.

Palliative care as a basic human right was the subject of Dr Henry Ddungu’s input to the conference.  Dr. Ddungu spoke of the individual’s right to dignity, and how freedom from pain and access to sufficient and efficient pain medication is a basic human right.

The panel discussions that followed these inputs spoke of how partners are pursuing the highest standards of palliative care, aligning with best practice and, always, putting quality patient care at the centre of every piece of work.

The keynote address for the day - ‘Inspiring Hope’ - was delivered by guest of honour, Professor MR Rajagopal, who himself is the embodiment of hope.  “I believe that there will be more good in this room today than in most parts of the world,”he said in his opening remarks. He presented a ‘new normal’ for modern healthcare; one that goes beyond treating disease, one that tends to the physical, social and mental wellbeing of our community.  He spoke about those on the margins; neglected populations such as women, LGBT, those with difficult to treat diseases, and those with mental ill-health.  He spoke of the challenge and the responsibility to treat without discrimination, to afford everyone the same high quality healthcare.

A representative for Uganda’s Minister of Health, as part of a panel discussion, congratulated Cairdeas and MMPCU on the exceptional quality and impact of their work, and re-emphasised the Ministry’s commitment to work towards becoming a world leader in palliative care.

The afternoon session on education and training saw wide-ranging inputs from healthcare professionals presenting first hand case studies and research findings.  Professor Julia Downing, from MMPCU and the ICPCN (International Children’s Palliative Care Network) emphasised the pivotal role of nurses in palliative care and she described positive impacts of a capacity building / nurse training programme which started in 2015, funded by the Tropical Health Education Trust.  Nurse, doctor and student inputs all followed: Elizabeth Nabirye presented evaluation findings of a nurse-prescribing programme for morphine; Professor Harriet Mayanja looked back on the journey of palliative care training and degrees in Makerere University; and Dr Bogere Najib described the experiences and challenges of practicing palliative care as a resident.

An account of the Master of Medicine (MMed) training programme in Rwanda was given by Dr Jean Pierre Siboma.  This is one of the many partnerships that Cairdeas and MMPCU have developed globally, in order to develop capacity, learning and growth outside of Uganda.  This led onto Dr Margaret Tumwebase presenting an evaluation on the potential of e-learning for palliative care and described the array of tools available for e-learning.

Messages of support for the conference were received from around the world:

“Congratulations and continue the important clinical and capacity-building work you are doing! You inspired me to pursue a career in competent cross-cultural palliative care and I’m extremely grateful!” Dr Danny Low, USA

“Greetings to all my friends and a happy 10th anniversary! Congratulations on all your achievements over the years,which have transformed the lives for so many. What a privilege it has been to be part of such an amazing team and continue those relationships across countries. Look forward to future collaborations.” Dr Gurs Purewal, UK

NOTE: all of the presentations made at the conference will be available on the resources section of the Cairdeas website https://cairdeas.org.uk/resources