Path to Palliative Care
In a recent post of mine I tried to dispel some of the myths surrounding Palliative Care, its definitions and of course the impact of these on family life. This time I must admit writing this article seems easier however more traumatic, you see the path to palliative care has not been easy, for the most it has been tough. Why? Largely due to some of emotional highs and ‘official loop holes’.
It was when Arjun was around four that we first were introduced to Martin House Children’s Hospice. It was a shock to say the least. Our first reaction I that of disbelief ‘our son’ would need to go to a ‘hospice’. Understandably, when you hear the words ‘hospice’ our reaction are of death, of end of life, sadness, suffering and general solace. This is a myth, these are the emotions and preconception we have of adult hospices, I’m not going to lie, these were our misconceptions too. Children’s hospices have quite a different feeling. They are about empowering families to deal with anything that they will face on their journey through palliative care and ultimately end of life.The first time we were referred, we were denied access, at this age Arjun was not deemed to be ‘ill enough’ or ‘fit neatly into the categories’ (this was a decade ago), despite doctors informing us at birth that he was life limiting. It was a shock when we were denied, but current funding cuts and the level of need in the community proved that the sector is underfunded and that not everyone can have access.
Before we were accepted into Martin House we had what was called a DNR, but it was pretty simplified and written with what is more of an adult style palliative care stance. We had no idea that here was the newly formulated LOTA which is aimed at managing the palliative care of children too. Martin House was the lifeline that we really needed.
The hospice allowed us to discuss openly, without judgement and repercussion our thoughts, anxieties and wishes for Arjun. Before this it always felt like we were in the hands of the hospital doctors and that our desires were always tinged with a little guilt placed upon us from them. It always felt a little like we were treading a fine line between what was right for out son and what was deemed morally and ethically accepting to the specialists, that in many cases the personal opinions and beliefs systems of the professionals clashed with what we wanted for OUR son. It is fair to say that it has been both a personal and wider battle on our path to palliative care.
Palliative care is much more that just end of life; it is about quality of care during these most vulnerable times. Palliative care requires deep communication with parents, a clear plan of action and on- going emotional support for all. For many the path to a palliative care can be traumatic; acceptance that there is little that can be done medically for your child leaves a lasting impact on you as a parent but also for the siblings. This is where the hospices and access to the right palliative care can make or break a family.