Science and kindness – Dr Richard Hain speaks on the 7th International Cardiff Conference on Paediatric Palliative Care

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What are your thoughts on the success of the 7th International Cardiff Conference recently held in Wales?

I was delighted that so many people from so many countries continue to see the Cardiff Conference as a key event on the paediatric palliative care calendar. Running a conference is a bit like holding a party – all you can do is get the place ready, send out the invitations and hope for the best!  It’s the people who come along who make it work, and that was certainly true this year; people – speakers and delegates – arrived determined to enjoy learning from one another, with the result that the atmosphere was both intellectually stimulating and highly sociable.

One of the things that made a difference to me personally this year was the support of Professor Daniel Kelly in Cardiff. Having someone local to discuss ideas with – and especially someone who knows the University well – was really valuable.

I overheard one international participant say that the Cardiff Conference had been on his ‘Bucket List’ for a long time. What, in your opinion, sets the Cardiff Conference apart from other conferences within the international paediatric palliative care forum?

Well, it was one of the first conferences to focus exclusively on children’s palliative care, and we’ve been going a long time (the first paediatric palliative care (PPC))conference in Cardiff was organised by Dr Ruth Davies in 2000). So I think one thing that marks it out is that it has become part of the calendar and the structure of our small specialty. People know Cardiff is coming up, and they know they will be able to meet to compare notes with some old friends – something that is otherwise not always easy; most of us work in relative isolation.  

At the same time, the focus of Cardiff is very much on providing a platform for people to present research that is good quality, but clearly linked to the actual practice of palliative care in children. That makes it interesting, because it’s not necessarily of the typical medical ‘double blind trial’ type of research. It can also include ‘N of 1’ trials, qualitative studies and even philosophical and ethical research. And research doesn’t just come from countries where resources are plentiful. Many of the delegates come from places where high-tech medicine is hard to deliver, but where palliative care – often delivered extremely innovatively – is achievable. So as well as meeting old friends, delegates also know that they will hear people they have never met before, often working in cultures very different from their own, but ultimately facing the same sorts of problem and delivering care that has the same priorities.

The conference had a rather compelling theme: ‘Medicine and Compassion: Tool for the Task…Or Dangerous Distraction?’ Can you share a little of your motivation to choose this theme?

There were two motivations, really. The first was a practical one. I always try to choose a theme that gives enough structure to the conference to help hold things together, but not so much that it inappropriately limits the range of research people feel they can submit for consideration. We want people from all kinds of professional backgrounds and cultures to feel able to submit all kinds of research.

But this particular theme was suggested by a growing sense that some see compassion as a sort of ‘added extra’ to healthcare that can get in the way of rational thinking. And at the same time, a sense among others that, at the end of life, it no longer matters if we are rational or not – we just need to be nice to our patients. It seems to me that that it is a separation we simply can’t afford to make in palliative care.

How well do you think the plenary speakers and others addressed the theme of compassion vs evidence based medicine in PPC and what conclusions do you believe could be drawn by the end of the conference?

As always, I was amazed and delighted by how the plenary speakers illustrated the theme. They all obviously ‘got it’ and managed to present a series of talks that, while distinct and individual, were clearly linked to one another and illustrated common ideas.

Prof MacAuley emphasised both the importance and the limitations of evidence as a basis for deciding on a compassionate approach. If it is a ‘Holy Grail’, he said, it is one we should be prepared to let go of sometimes. 

Prof Hordern used the theme of time as a way into the practical demands of compassion: time as a resource to do compassion in – one that, according to some, is too scarce for it to be possible in today’s health service. Time as the basis of a paradigm that can distract from compassion, and, finally, time as a substrate for compassion; a currency with which, if it is properly spent, practitioners can value their patients. 

Prof Downing used her clinical experience on several different continents to remind us that the absence of medicines does not have to limit compassion in theory, but that it can do in practice. There are many countries in which the bare minimum for compassionate management of pain, for example, may not be available. The challenge for other countries, she went on, is that the presence of medicines does not guarantee the presence of compassion. 

All three speakers were making the same fundamental claim; that if you want to do good palliative care, you can’t separate compassion from medicine as though medicine were merely a science. The aim of medicine is to care for people. The nature of people is that we are both thinking creatures and at the same time feeling ones. 

If all we are is rational, we will never meet the real needs of our patients and their families, which means it is irrational to be no more than rational. And if all we are is kind, we will never know which treatments work well, or cause fewest side effects, which means it is unkind to be no more than kind. 

The issue of euthanasia for children in Belgium was addressed by a plenary speaker and was also raised by Baroness Ilora Finlay during the conference. In papers you have stated that you do not believe euthanasia has any role in paediatric palliative care. Do you believe the children’s palliative care community should be more proactive in promoting this point of view and, if so, what would be the most effective ways to do so?

I think we do need to be more proactive. Dr Friedel-Castorini made the point that people who support euthanasia usually do so because they honestly believe such a change in the law is the most compassionate way of dealing with dying patients. If we believe (as I do) that that is not true, we need to explain why. We need to explain that there are better ways of caring for the dying. We might need to point out, as Baroness Finlay did, that even if a change in the law were to benefit a few people (which seems likely), that benefit is overwhelmed by the danger of making it legal to take someone’s life on the grounds, simply that they have a terminal illness. 

We can do that explaining through making rational arguments, or through evidence that shows how well alternatives can work, or (perhaps the easiest and most effective of all) expressing our concerns to our representatives in parliament .

Baroness Finlay, who spoke at the Cardiff Conference, is taking that a step further. As a UK law-maker herself, in the House of Lords (our upper chamber), she is setting out a Bill that would make provision of palliative care a legal requirement. That is a powerful  strategy that would strongly underline the value of palliative care as the best way to care for dying patients. I would encourage people to contact her on to express their support for her Bill.

Looking forward to the 8th Cardiff Conference in 2017, is there anything you would like to see changed or improved and have you already begun thinking up another thought-provoking theme? 

As always, I’ve ‘got a little list’ in the back of my copy of the 2015 Conference Programme with all the things I’d like to do differently next time. Most of them are minor structural things, but of course I haven’t seen the feedback yet and new ideas might well come out of that. Ideally, I’d like to be able to offer a range of bursaries for students and practitioners who can’t easily afford to come. I’d also like to see us in a more swish venue – one with more comfortable sets and better breakout rooms, perhaps. But Cardiff University provides the current venue free of charge, so that would risk putting up the cost, which we have been determined to avoid.

I must admit I haven’t started thinking about the theme for 2017 yet. Ideas from readers of ehospice would be most welcome!

We are all well acquainted with the numerous barriers that hinder the development of paediatric palliative care services in most countries, but what do you see as some of the greatest opportunities for the field in the future?

I am an optimist at heart. It seems to me that most people genuinely want to do the best for other people, and that is especially true when it comes to caring for vulnerable people such as the families and children we care for. So, for me, the barriers are often about not understanding, or about misunderstanding. 

Not understanding, for example, that it is really quite common to encounter a child with a life-limiting condition, that in most countries there are hundreds or thousands of children who die each year as a result, and that many of these children will suffer in a way that is quite unnecessary. Or misunderstanding the way that opioids work, thinking that morphine will stop a child breathing, or that heroin as an analgesic is addictive. 

Those failures of understanding are still far too common, and they persist far too high in the hierarchy of our politicians and policy-makers.  But they are essentially no more than errors, and I think with time they can be corrected. Individuals in many countries are gradually changing those misunderstandings; often, by the way, relying critically on the support of ICPCN. 

So, as I see it, the barriers are not primarily failures of people’s compassion but of their scientific understanding. Those failures can take a long time to rectify, but it can be done. Correcting errors of people’s knowledge and reasoning, while at the same time harnessing the motivation of their compassion, seems to me to present the greatest opportunities for us to succeed in the task of ensuring that children with life-limiting conditions get the kind of care they need.

Dr Richard Hain, MBBS, MSc, MSt, MD, FRCP(Edin), FRCPCH, Dip Pal Med, PGCertEd (Prof Clin), FHEA is a Consultant and Lead Clinician in Paediatric Palliative Medicine and Visiting Professor at the University of South Wales. He is also an Honorary Senior Lecturer at Bangor University in Wales. 

This interview was originally published on the International Children’s edition of ehospice

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