Palliative care is….. the most incredible journey

Categories: Opinion.

Most journeys have something in common – a start or a beginning, it is a question that I have been asked many times “when did you start to take an interest in palliative care”?

The professional journey

I used to answer that my interest began on my first ward as a student nurse, when I met a young man, just four years younger than me.  Bob, one of the trained nurses, took me aside and asked why I didn’t spend as much time with this young man as I did with the other patients. I said “because I don’t know what to say – or what to do to make things better”.  Bob put me right. He pointed out all the things I could say and do.  So I started, that day, approaching the young man and just talking about the day he’d had; what he would be doing at home – just ordinary, day to day chatter. But I learnt so much from the conversations with that young man – most of all not to turn away and recognising that the fear of getting things wrong almost certainly makes sure you can’t get things right.

So, I sat back, happy I could tell people when my interest in palliative care began until my mother pointed out that the beginning of my interest in end-of-life, and therefore, palliative care was a year earlier.  The event was also a turning point in my career. I had decided to turn down a place at medical school to become a nurse, following the death of a patient while I was working as a health care assistant.  I was left holding the man’s hand, murmuring reassurance as he slowly died following a massive bleed.  I realised then that I wanted to be working at the bedside. I wanted to be working with patients and not treating diseases. So I chose a career in nursing.  I do wonder, if I had met a palliative care specialist at that stage, whether or not I would have made the same career choice.

An introduction to children’s palliative care

I moved on through the National Health Service and then into working in Government where I led on the introduction of the Diana Nursing Teams in UK following the death of Diana, Princess of Wales in 1997.  This brought me in touch with the experts in the children’s palliative care world, a place which felt so “right” and still feels right. At the same time, that work also brought me in touch with the parents, children and young people whose lives are impacted on by a life-limiting condition. I know that the UK has a wealth of services and professionals working to provide high quality care to babies, children and young people with palliative care needs and their families, but there are still gaps. However, I know that there are also people working together to try to fill those gaps.  I look forward to a new focus on engaging communities in children’s palliative care, mobilising new resources – people and communities, where children and families live.

I now work full-time in the children’s palliative care sector with the UK organisation Together for Short Lives. I am also fortunate to be a trustee of two children’s hospices and am involved in the work of the International Children’s Palliative Care Network, so have amazing opportunities to link with people from across the world to try to ensure that children receive the care they need, in the place they choose, from people with the right skills.

The personal journey

So my journey into the world of palliative care was a professional one, but of course there is the personal one too. My parents are from the generation where childhood death was, unfortunately, all too familiar, bringing an attitude that death is one certainty in life and something to be talked about as a matter of fact and not in hushed tones.  Despite this, there have been the testing times of being with a loved one and knowing the time had arrived to have the conversations about what they want to happen as they approach the end of their life.  Needing to talk about the details, meaning there is a mutual acknowledgement that this time the conversation is for real, not the wild fantasies, but the details about the things that matter so much.  The raw emotion of hearing the last wishes, the burning desire to make sure the wishes are realised, the tiny flicker of hope that everyone has got it wrong and you have a little more time together and that breath-holding moment when you wait for them to breathe one more time, and then that sense of relief that you know that the things that mattered most, happened; the wishes did become a reality.

An unending journey

I have had a number of “beginnings” in palliative care, but as yet this journey does not have an end. How can it when there is still so much to do?  Millions of children die without access to the right care or the right medication. I can’t end my palliative care journey until I have done everything I can to know that their parents and families can have the same sense of relief that the things that mattered most, happened.

On Wednesday 27 November all ehospice editions will be running a series of articles in which different people will explain what palliative care means to them. You can read all the articles in this series from the other editions by clicking on the links in the related articles section.

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