A recent study has proved that people who receive palliative care can live for longer. The study, which based its findings on patients with lung cancer, highlighted the optimal position of those diagnosed as terminally ill who were receiving the extra support of palliative care. This advocacy and wider awareness of palliative care – despite being of utmost importance – is something that doesn’t often get the recognition it desperately needs.
Last Saturday marked World Hospice and Palliative Care Day, a national awareness day introduced by the World Hospice and Palliative Care Alliance, with this year’s theme being ‘living and dying in pain: it doesn’t have to happen’ – opening up the conversation around end-of-life care.
Wherever possible, every patient deserves to live and die without pain, and this goal is more attainable than ever due to advances in technology and medicine. Such advancements have enabled treatments to be much subtler now, and in addition to this, there is a bigger toolbox of therapeutic interventions for prescribers to use. This is a progression invaluable in our 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.
Helen & Douglas House, which is the world’s first children’s hospice, has been through many changes over the last thirty years, and there are now a number of children’s hospice services providing excellent palliative care across the UK. Like us, these establishments offer world-class medical care to children and their families, enabling respite, empowered choice, and comfort in decisions including how and where to spend final days and weeks together. These are weeks that, through both living and dying, should be free of pain if possible.
In my experience, pain is often made worse by a person’s psychological state, meaning holistic approaches are essential. Providing the opportunity for people to live their life to the fullest is a lot of what we do, and a life lived 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.
For our patients, the experiences of palliative care are those that mark out their life quality. These are activities that are memorable not for their pain or suffering, but rather for the successful quality of life experienced by the patients involved. Where we can’t promise painless days, I believe that everyone should be able to access good palliative care that tries to alleviate this, and, if they need it, specialist care too.
Other ways of reducing pain range from providing practical support, ranging from logistically feasible cinema or football match trips, to help with organising a disabled badge, to bringing the family cat or dog in. This is the type of support and interventions can significantly help reduce stress and therefore pain, returning patients to a more comfortable psychological state, which can be just as important in decreasing experiences of pain.
It is vital to remember that a person’s experience of living and dying should not be painful, and it is up to those of us who work in palliative care to ensure that this is the case.
Words by Clare Periton, CEO, Helen & Douglas House, the world’s first children’s hospice