Reflections from a palliative care conference

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Delegates at the joint APCA/HPCA palliative care conference

I have just returned from the African Palliative Care Association and Hospice Palliative Care Association of South Africa joint regional conference in Johannesburg, South Africa and I am inspired.

This was my first palliative care conference. A year ago I didn’t even know what these words even meant. Before the conference started I could have told you about palliative care and perhaps more importantly why it is important. I would quite possibly have waxed lyrical about it being everyone’s right to live a life free from preventable pain. I might even have told you about someone inspiring that I’ve met who has spoken about the importance of palliative care to them.

But, if I am being honest, before this conference I wouldn’t have really felt it.

Something in the way I think about palliative care has changed over the last few days though. Trying to put my finger on exactly what is difficult – so much has happened. It could have though been the moment when a Ugandan journalist who I was sharing a stage with let a single tear drop roll down her cheek as she talked about her Aunty being unable to access basic pain medication in her dying days.

It could also have been when a complete stranger, who I still don’t know the name of, approached me and talked to me about the burden of feeding her bed bound mother every day as she was too frail to feed herself and that the local hospital would not accept her because, so they said, “there was nothing wrong with her”.

It might even have been that unspoken moment when a delegate was asked if she had children and after a moment’s pause she responded that, she “used to”.

But of course it was a cocktail of this and more. It was spending 4 days in close confines with inspirational people who were dedicating their lives to ensuring as many people as possible experience the palliative care that they need.

People who had talked the Bush administration into setting up a fund for palliative care in their HIV response programme. People who had pioneered palliative care in Africa 2 decades ago and were still as passionate and articulate as they ever were. People who felt a guilt for attending a palliative care conference because it meant that they were away from their patients bedsides for just under a week.

The passion and empathy of so many of the delegates from around the world touched me in a way that I didn’t necessarily expect it would.

On the final evening of the conference there was a diner reception. As I was standing watching delegates dance, joke and chatter, I thought to myself that it felt just like a family reunion. There was a tacit acknowledgement that everyone understood, at least on some level, why everyone else was there. Just like a family is bound by the bond of blood so at this conference it felt like there was an unspoken bond in the knowledge of, and passion for, palliative care.

As with all families though, there also exists unspoken traumas that rest just beneath the surface. But standing watching delegates dance I reflected on what I felt to be the strength of this “palliative care family”. Palliative care gave each member the opportunity to be able to share these traumas that we all have with each other. Everyone was accepting and expecting to offer a ear when someone needed to talk about losing a patient, friend or loved one.

During one of the workshops Reverend Rick Bauer made a comment that stuck with me. He said, “When you are talking to a patient the most important thing you can do is be there 100% with them at that moment.” I think what made the atmosphere at this conference so special was that, almost without realising, delegates were 100% attentive to those around them and to others commitment to rolling out palliative care to all those who need it.

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