The invitation arrived for the 4th International Conference for Palliative Care hosted by Palliative Care Works (PCW)..an organisation that has steadfastly and consistently worked to spread the word and the teaching of palliative care globally by the use of education and mentoring. It was titled “The Pandemic – Sustainability and Palliative Care –what’s the story?”
PCW is an inspiring, unassuming bunch of individuals who quietly plug away to improve the provision of palliative care in resource deprived settings.
I first encountered two of the trustees – Karilyn and Richard Collins – many years ago when their support facilitated me to go on a sabbatical in Tanzania to help mentor a team. It was such an all-consuming time that it lit a fire that has burned quietly ever since.
It was an experience that opened my eyes and my heart to the good that can be achieved with vision,compassion and persistence. Palliative Care Works keeps knock ,knock, knocking on those palliative doors…
The pandemic has been such an unprecedented time….it has made my world vision so contracted and myopic that I have scarcely looked beyond my own nose and neither for the longest time did I wish to.
My fire was smouldering out… I have had no sense of what has been happening beyond my own doorstep…I see the issues and challenges that my own patients face and, even with the head start that we possess, the landscape still seems somewhat uncertain.
It was a real breath of fresh air to attend the conference…there was a sense of optimism and hope that was palpable and infectious from the outset.
Covid-19 has not been a good time for anyone except maybe the makers of PPE and toilet rolls …but seeing this troupe of individuals made me realise that it has marshalled the troops and has been a call to arms for those that champion the needs and the rights of the dying.
We all deserve to lead our best lives but also, and perhaps more importantly, we all deserve the right to die in dignity and without pain.
The conference had a packed agenda with guest speakers and slots for St Christopher fellowship students.
The first speaker was Joan Marston…a South African who sits on the Executive committee of Palliative Care in Humanitarian Aid Situations and Emergencies (PALCHASE).
She spoke of the challenges faced in nurturing and developing palliative care globally, of the inequity and adversity that the world faces… of the whole world going down the Covid-19 rabbit hole and the challenges that we all face in trying to adapt our care and support in an even more adverse climate.
A particularly stark reminder was that 88 % of the world wide need is not met, that millions of adults and children do not get the care that they so desperately need….she reminded us that we hadn’t learnt the lessons of the HIV pandemic. But she also spoke of how Covid-19 had increased the awareness of, and the need for, palliative care in its approach to symptom control, communication, and ethical decisions.
Above all she retained a quiet optimism…quoting Mother Theresa who said:
‘Not all of us can do great things but we can do small things with great love.’
That really struck a chord for me. I work in a British hospice and I always hope that in my daily work I can make a little bit of a difference to the lives of the people I touch…or rather sadly don’t touch during these current times.
She spoke with such considered optimism and warmth and her words reinforced our commonality, our shared sense of all wanting to help….our cultures may be different but we aren’t so different as people…we are all striving for the best …using technology to provide the connection that Covid-19 had prohibited…making changes that will hopefully long succeed it….seeking to forge global links with one another….continuing to raise the standard for palliative care the world over…
It always starts in little ways with stories of people who have been helped …one person helped by another…..and so the stories grow in strength by their sharing…the elderly man who no longer felt he had only pain for company….that a dose of opioid have given life back to his dying where there had been only pain.
The students from the Fellowship course in Palliative Care (St Christopher’s Hospice London) and the Institute of Palliative Medicine, Calicut, India brought their enthusiasm and their narratives to the table … their hope was palpable as was their ongoing commitment despite the setbacks and the difficulties they often faced. It was truly an international agenda … calling India – Anu Thelly, the Philippines – Dr Nanette Ramilo Cruz, Iran – Leila Khanati, Mexico – Dr Beatriz Dorsey, and Zambia – Dr Mataa M Mataa. I was bowled over by the way they spoke…’We all have issues…but we are determined to work through’ they said.
It was so encouraging to see what is happening in other countries …amazing to hear of the innovation, the adaptation that has been catalysed by Covid-19 but is most importantly likely to help with the ongoing sharing and dissemination of palliative care to where it is most needed into the future.
Palliative care perfectly exemplifies and embodies the art of humanity and science of the body. It reminds us that to say something is psychosomatic is not to be derided or dismissive; in fact it is all psycho-somatic…it is only through acknowledgement of the physical, spiritual ,social ,and psychological that we can hope to fully address the needs of all our patients but especially those that are dying…those needs are universal but also they are embedded in our cultures and societies…the guest speakers reminded me that for palliative care to be the panacea that it so desperately must be , it must evolve and adapt and integrate within each culture and country…we need each of us to make it our own…become crusaders and champions….mavericks and magicians..
There is plentiful work to be done…it is physical…social and political and we must stamp our feet and tell our stories of the differences we made and the difference we can make by thinking and acting in different ways…only in this way can we hope to make it sustainable…the guest speakers showed this with elegance and eloquence…conviction and aplomb.
Dr Zipporah Ali, Chair of Non-communicable Diseases Alliance of Kenya, spoke of advocates and leaders .. that countries need palliative policies … not ones sat on a shelf but implemented with finances and resources…the benefits being manifold …not only to patient and carer but with short hospital stays that equate to cost savings.
Dr Paul Mmbando, the Health Programmes Director of the evangelical Lutheran church in Tanzania, expounded on the stark impact of Covid-19 …on the withdrawal of donors and the ongoing need to implement and integrate palliative care into hospital routine and programmes in general as a way of sustaining it in these ever changing times.
Dr Christian Ntizimira of the African Centre for Research on End of life Care in Rwanda spoke lyrically of how palliative care can bring back humanity …not just with its treatments and medicines but by restoring compassion…reiterating that sustainability is fundamentally about integration into the public health services.
He also mentioned his novel system of recognizing family members as animal archetypes as a way of understanding their personal suffering and harnessing the strong support that families can provide. Without disclosing too much I’m glad of the lion and the tortoise in my own family network.
There were presentations by PCW trustees…the first by Karilyn Collins and Charles Campion-Smith which detailed a Tanzanian palliative care training funded by UK Aid Direct. It was much in line with the PCW ethos and principles…educating, mentoring and nurturing…the grant was to provide training with objectives including 60 patients taking morphine and 100 most significant change stories.
I truly believe personal narrative works with the public, and big numbers work for the politicians; palliative care has to learn to combine both adeptly in whatever place or country it finds itself.
Unfortunately Covid-19 hit in the midst of the training and meant that the training was reconfigured….in previous cohorts physical teams have run physical courses…but Covid-19 resulted in virtual mentoring from the UK with Tanzanian mentors being the hands, feet, and brains in the hospitals.
Covid-19 forced things to be done differently with ongoing benefits…this project surpassed its initial objectives with more patients seen …more treated with morphine ….and multiple stories of patients benefiting, not from painful endings, but good ones.
PCW has developed an astounding Toolkit for resource-deprived settings.
It is available in many languages and has an accompanying Trainer’s Manual. Its common sense approach to palliative care makes it an invaluable educational tool -which I have also used in my sessions with the young doctors that I supervise.
Because of the limitations wrought by Covid-19, PCW Trustees have developed a series of videos related to core topics as supplements to the Toolkit.
These can be accessed via Vimeo and are useful irrespective of country or setting….a definite boon to the bastion of palliative education.
Above all I came away believing that the future of palliative care is secure in the hands of these people as their commitment, compassion and drive will ensure its sustainability despite the challenges pre-Covid , during Covid , and post-Covid.
As those of us working within palliative care, and an increasing number of people both personally and professionally can vouch, where palliative care happens, in whatever way, shape or form it takes, palliative care works.
It works for the living but most importantly it works for the dying and those that care for them.
Bravo Palliative Care Works!
My torch is again aflame.