Making an advance decision: Richard's story

Even before I talked to my GP I was sure I had Parkinson’s.

I have always enjoyed adventure sports. With my wife of nearly fifty years, I have walked and climbed in Britain and abroad, including the Alps and Dolomites. Until very recently I was a keen rock climber and enjoyed some quite challenging potholing.  

But it was on an adventure holiday in France that I first noticed something was amiss. I couldn’t walk up the mountains with my usual ease. There was also an occasion when I was writing a postcard and I noticed my handwriting had gotten smaller. 

When the diagnosis was confirmed, it wasn’t a big shock – I was into my seventh decade – and I accepted the likelihood of diseases of old age. It didn’t worry me too much. I’m a cheerful person and thought I would just get on with my life, making adjustments as required. 

Facing the reality

When I met my consultant, he outlined how my condition may develop over time, although he was careful to avoid predicting its speed. Then he mentioned the final palliative phase.

I imagined all kinds of scenarios – immobility, being tube-fed, or developing dementia. It did worry me and I immediately thought, “I’m not doing that.” 

I know palliative care isn’t a bad thing and as a way of keeping people comfortable while they are dying, it’s an excellent service. The problem for me is that most people’s life expectancy won’t change much because of Parkinson’s, but some of the more advanced symptoms can be very difficult to deal with.   

A living will

On occasion over the next few years my thoughts turned to how I could die in the manner I wanted to. These thoughts did not come from despair or depression, they were not suicidal thoughts. It was more a desire to remain in control of my life. 

While researching options, I eventually discovered there is a simple and legal way of retaining control – an Advance Decision to Refuse Treatment (ADRT). This means I can decide which treatments I would accept or refuse in the future, in the event I couldn’t communicate or lost the capacity to make decisions. 

Although the NICE guidelines recommend that healthcare professionals explain what ADRTs and lasting power of attorneys are, no one had ever mentioned this. I wonder why. Perhaps it’s because I didn’t ask?  

I can completely understand people may not want to think about the end of their lives. I’m not sure how many people share my views, and I don’t want to change anybody’s mind if they don’t. But I do think people should know their options.  

Stating my intentions

I discussed making an ADRT with my wife and she reacted calmly, but with some concern. Over several conversations though, she came to realise I was very serious about it and understood I had thought through the implications. Eventually she said she was willing to support me and we shared my intentions with our two grown-up sons as well. 

I wrote a draft and discussed it with my GP.  She made some helpful comments and suggested I should also talk to a practitioner in palliative care at our local hospice. These conversations helped me refine my decisions.  

In the final document, I outlined the circumstances under which the ADRT would come into effect and what treatment I would not accept. It also stated what basic care, such as pain relief, I would want to keep me comfortable. I signed and dated the decision and had it witnessed. Then I sent copies to my family members and to my GP practice.  

I found the process very helpful. It relieved me of the worries I had about losing control of my life. It also allowed me to communicate my thoughts to my family, on a topic that might otherwise be hard to discuss. 

I was still worried that when the time came to activate my ADRT, my family might struggle under the weight of responsibility though. So I also made a Health and Welfare Lasting Power of Attorney. This makes it clear that a legally appointed attorney or attorneys must act on my stated wishes, including refusing medical care or life-sustaining treatment.

Questioning assumptions

I feel like it’s generally assumed that the person who may be at the end of their life and does not want to be a burden, is putting the convenience of their carers before their own interests. But I question this assumption.  

For me personally, when I say I don’t want to be a burden, I’m looking at it from my point of view. I don’t want to lose my autonomy or experience a loss of dignity. Really, my wish to have an ADRT in place is a selfish one, but with the additional benefit of relieving my carers of needless strain and heartache.

Now having made my arrangements, I feel I can get on with my life.  

Find out more about making an advance decision.