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Why a person’s death should not be painful

Author: Clare Periton, CEO, Helen & Douglas House, the world’s first children’s hospice
10 October 2016

Clare Periton, Chief Executive at Helen & Douglas House, shares her thoughts about World Hospice and Palliative Care Day and the theme 'Living and dying in pain: it doesn't have to happen'.

Saturday 8 October was World Hospice and Palliative Care Day, and this year the theme was ‘living and dying in pain: it doesn’t have to happen’ - an important message on an even more important day. It has now been statistically proven that people who receive palliative care can live for longer.

Whilst every patient is different, the chance of an increase in the length of life, can be something very special, extending the time to do the things that are important to them and an opportunity I believe that every patient deserves. Advances in technology and medication have enabled treatments to be much subtler now, and in addition to this, there is a bigger tool-box of therapeutic interventions for prescribers to use. This is a progression invaluable in the sector and particularly helpful in caring for children and young adults, as we do at Helen & Douglas House, whose conditions sometimes spans a much shorter life.

Our ability to care for children with serious and life-shortening conditions has improved dramatically, and thirty years from the opening of Helen & Douglas House, there are a substantial number of children’s hospice services providing excellent palliative care across the UK. They can offer children and their families world-class medical care, respite, empowered choice, and choice of how and where to spend final days and weeks together. Weeks that, through both living and dying, should be free of pain wherever possible. Often pain is made worse by a person’s psychological state so I believe that holistic approaches are essential within the sector.  Enabling people to live life to the fullest is a lot of what we do, and a life to the fullest is a life with as little pain as possible, regardless of how long that life will be. For those that we care for, every day presents a different challenge.

During a typical working day, our nurses may be presented with extreme ends of the spectrum within patient support and care. In the morning, they may work a shift in which they carefully plan how to take a young person with high dependency needs and life limiting conditions to the cinema, with all the logistical dilemmas this poses. By the end of the day, they may end their shift supporting a colleague with a family as their loved one dies. These opposing sides of patient support make the roles of those at the charity both challenging and incredibly rewarding, and emphasize the nuanced approach involved in removing pain from everyday life.

For patients, the experiences of palliative care are those that mark out their life quality. These are activities that are memorable merely for the absence of pain or suffering, but integral to the quality of life experienced. Where we can’t promise painless days, I believe that everyone should able to access good palliative care that they need and if they need it specialist palliative care. Care that includes practical support, from the cinema trips described, to organising a disabled badge or mowing the lawn, can help reduce stress and therefore pain, returning patients to a more comfortable psychological state, which, as I mentioned earlier, can be just as important in decreasing experiences of pain.

In my experience, wider society and those outside of the sector assume that pain is the most frightening thing in the process of palliative care, but it could be a number of things. Often we find breathlessness and disorientation considerably more challenging and less fixable than something for which many people take daily medication. Proving that living and dying well is not only limited to pain-management., but requires holistic symptom management.

Most importantly, as we take World Hospice and Palliative Care Day to reconsider the way we think, and talk about discomfort at the end of someone’s life, I think the lasting message is that a person’s death should never be painful, and it is up to those of us who work in palliative care to do all we can possibly do to make sure that this is the case.

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