What if we viewed lived experience as an asset? As an asset of professional, economic,…
I was asked to write a piece by the National Council for Palliative Care and Together for Short Lives about whether young people with life limiting conditions want to talk about their end of life, and if so, why, where, with who and how, and if not, why? They need lots of life limited young adults to either write a piece or speak to Joanna Black about whether they want to talk about their end of life, what it’s like to be a life limited young adult and how, where and with who you want to talk about your end of life. They want to make it easier for professionals to feel more comfortable about how to approach these kinds of conversations.
If you are a life limited young adult, or a parent or relative of a life limited young adult, here is the link to the page explaining what they need and the contact details for Joanna Black.
Here is the piece I wrote for them.
|19th May 2011 – the day I got my Hickman line (pictured)|
I remember being at deaths door, malnourished, dehydrated and starving to death from Chronic Intestinal Pseudo Obstruction which was preventing me digesting and absorbing the special feed that was being pumped into my stomach, and then small bowel. They were starting me on a new, highly specialised way of feeding, called Total Parenteral Nutrition (TPN). It’s a mix of nutrients, vitamins and fat pumped into the bloodstream via a line which sits just inside the heart. The doctor pulled my mum aside one day and said to her that he didn’t know if it was too late, that my body might be past the point of being helped. Fortunately, it wasn’t. As we learnt more and more about TPN, we were told that there are patients who have been on TPN for twenty five years. My mum, horrified, said “but she’ll only be forty two!”. At this point we’d never considered the possibility that my life would be shorter than expected. We soon found out that TPN comes with complications such as life threatening, potentially fatal infections in the central line it’s delivered through, which can then travel into the bloodstream causing sepsis, as well as liver failure, blood clots and bone problems. I was only seventeen, so this was a scary prospect.
Eighteen months later, after a horrendous time and a long stint in hospital, where I was very poorly, my team finally admitted there was nothing more they could do for me. My life expectancy will be limited, so much so that I might only have five to ten years left. We had come to the end of the road. They referred me to a specialist unit to consider the possibility of an intestinal transplant, but the survival rate is less than favourable. We decided that the risks weren’t worth it, but we never heard back anyway. So here we are now. I am in receipt of palliative and hospice care, I am on the End of Life Care register, and the team I have are fantastic, all working towards improving my quality of life.
I am grateful for the honesty of my team, which is what I value most. It’s not an easy subject to discuss; it brings up many emotions, fears and worries, making us face our own mortality and accept that death is going to happen. My consultants have always been honest, supportive and sympathetic, making me feel at ease, despite the gravity of what they are telling me. They can’t say how long I have because my case is unique and nobody knows, but they filled me with confidence by assuring me that they will endeavour to stay on top of my symptoms and give me the best quality of life that is possible. I trust them because they are always honest and I know I can count on them. I always remember when I was told there was nothing more that could be done, my consultant perched on the edge of my bed, took my hand and looked me straight in the eye as he spoke. I respect him because I knew he didn’t want to admit defeat and really didn’t want to have to say there was nothing more they could do, but he knew what had to be done and he made every effort to bring comfort at that time. My palliative care doctor, district nurses, hospice nurse, carers, specialist nurses; everyone has kept my quality of life as the priority and treated me with honesty, dignity and respect. I feel able to talk to them about the tough subjects of end of life care and I’ve felt comfortable and at ease with most of them.
|My J’s Hospice nurse, Bev and I|
I’ve built up a strong bond with my hospice nurse, Bev, and we’ve become close because I trust her and consider her a friend. She’s the one person who my mum and I can really open up with. I can talk about my end of life with anyone, but only if I detach myself from it. I only fully open up and show my true feelings to my mum and Bev. After we’ve talked about end of life care, my wishes and death, I sometimes have a good cry because it makes it all real. I’m not much of a crier and I find it very hard to get upset in front of anyone other than my mum. However I’ve built up a rapport and trust with Bev and slowly I am becoming more able to talk about tough subjects, show emotion and get upset while she is with us. Being able to talk freely with Bev means I don’t have to burden my mum with all of my feelings. Mum and I have a very open relationship, we can talk about anything and everything and even with the toughest of subjects we find something to laugh about, but that’s a lot of pressure on her when she’s the only one I can be brutally honest with. That’s why I value my relationship with Bev so much. Bev also acts as my advocate and does a lot of work liaising with the different doctors and hospitals involved and has been a strong figure in getting my end of life care and wishes as I want them.
We often start these tough conversations off with a brief update of what’s going on, how I feel, what’s worrying me and what’s happened since the last time we met. Everyone has a different approach and though I want them to be honest, there’s a fine line between being truthful and being blunt. I wouldn’t want people to come marching in and just blurt things out, not taking into consideration my feelings, my understanding or privacy. I’m not sure there is a given way to approach it – we’re all different, have different outlooks, different feelings and understanding of our conditions, no two of us are the same – but I’d want them to talk to me about end of life in the same way they’d want to be talked to; they need to put themselves in the person’s position. Another way of starting the conversation off is to ask the person about himself and lead onto talking about wishes from there. There is a lot to learn about a person’s wishes through talking about who they are as a person, what their interests are, what their outlook on life is etc., even before you ask out and out what their end of life wishes are. I think they need to be prepared for tears, questions and possibly even anger, as everyone reacts differently. I wouldn’t want to be told things or to talk about end of life care on my own. I prefer talking about it with the presence of my mum, because we’re so close and I feel safe with her in the sense I’ve got someone who truly understands who can speak for me when I’m overwhelmed or words fail me. I’d always want my mum there for support, and she may say things I forget to say. Her input is important too. I know it’s my wishes that are most important but my family’s wishes need to be catered for also. My wishes will directly affect them, so I want their points of view and opinions to be considered.
|My mum, my sister and I|
It’s not easy coming to terms with the fact that you won’t live a long, full life, especially when you’re only a young adult. For me I feel like I haven’t had the chance to live yet, there’s so much more I want to and have yet to do. Sometimes life is cruel and unfair. I feel like I’m going to miss out on important parts of life, like getting married, moving out, having children, having grandchildren and seeing my sister get married and have children. There’s so many things I won’t get the chance to experience. That makes me sad, sometimes angry. I keep a journal and write down how I feel in it and looking back I seem to go through cycles where I’m determined and nothing’s going to stop me, and at other times I’m angry and upset about all the things I will miss out on. We all have good and bad days. My biggest issue is quality of life. I have a very poor quality of life at the moment and my view is that I’d sooner have a shorter, but good quality life, where I can do the things I want to and enjoy myself, rather than a long life of doing absolutely nothing and feeling miserable. I know that’s not everyone’s view, but quality of life is my number one priority. We’re trying desperately hard to improve my quality of life at the moment. I am currently bed bound and unable to do most things. We need to get on top of my pain, I need to build my muscles up again so that I can sit up for a few hours (I can’t sit up all day, for example, and that is highly unlikely to change, but a few hours would be fantastic), I need a major operation to form a Urostomy/Ileal Conduit which is where they use a section of bowel to form a tube to divert the urine before it hits the bladder out into a bag stuck on the abdomen, I need injections into my spine and pelvis and I need my Osteoporosis to be treated, all before we can get me the best quality of life possible. Unfortunately my conditions continues to deteriorate, so no doubt more problems will develop before we get on top of all of my current issues, however I am confident we can get me a better quality of life. I’m certainly not giving up, there is always hope.
|Photo Credit – http://rsdkids.com/hope-is-healing/|