Guest blog by Peter Ellis
Peter was in his fifties when he had a massive, dense and complex stroke on 26 March 2018. Although he lives in Norfolk in Britain, his experiences as a stroke patient will resonate with others worldwide. He writes:
As you approach this blog I want to assure you, the reader, that I am in a good place despite what I am writing about. But I want to be honest and true to myself.
What a tricky subject! Suicide is often unspoken about and difficult. We don’t like it. It is an unutterable consideration. People who have had a stroke often feel, depending on the severity, that their quality of life is so compromised that what is the point of continuing to live. There is perhaps a feeling you are too much of a burden and in the way. Pompili et al state that, “stroke is a dramatic event and is associated with potentially severe consequences, including disability, mortality, and social costs. Stroke may occur at any age; However, most strokes occur in individuals aged 65 years and older. Previous research has found that stroke increases the risk of suicide” (Pompili, et al 2014).
I have become very distressed on occasions. The thought of being seriously disabled, is completely overwhelming, wondering if I will be like this for the rest of my life. As I write I am listening to Songs of Praise and a couple of hymns and worship songs are featured, those I used to play on the piano. I start to cry, feeling immensely sad as I will probably not be able to play again. I wonder, again should I sell my piano?
When I was in hospital I remember a woman talking in a support group, she announced that her favourite pastime was driving her car and if she could not do this again she would end her life and said she was very serious about this. I just hope this was followed up by the psychologist. I also wonder what impact this might have had on other members of the group. This encounter still plays on my mind.
I have, at times, when I am distressed, feel overwhelmed and how life would be unbearable in the future. I struggle with not knowing how to escape and deal with the loss I experience. I wonder sometimes if I would be better off dead. On one occasion, Duncan was at the bottom of the garden and I was trying to contain my distress, I was sitting by the back door and I knew there were plenty of paracetamols in the kitchen. I had a choice, turn left, walk into the kitchen and swallow a handful of them or turn right and join Duncan in the garden. Clearly, I turned right and I am able to write this now. I honestly now feel I would not really want to take this selfish course of action. Those with their clinical/therapeutic hats on – there is no need to start the risk assessment!
Research has shown that stroke patients are up to twice as likely to commit suicide as people in the general population, and the risk of attempted suicide was highest in the first two years after a stroke. Among stroke patients younger than 55, the risk of suicide was five times higher than in the general population.
When I worked in the NHS I started working towards an MPhil (I ended up completing an MBA – don’t ask!!). As part of my study I interviewed the consultant oncology staff I worked with, about their attitude towards death. I found interesting results. A lot of the clinicians held various views on life and death and this influenced their approach to treatment offered to patients, some would go to the last possible course of treatment in an attempt to rescue the patient but one in particular stood out for me, he stated that he would only go for one round, possibly 2 but after that finish treatment as he believed we “come from dust and will return to dust” but the question remains is the attitude towards rescuing patients. Is offering treatment an attempt to preserve life at all costs worthwhile, if the quality of life remaining is poor? A lot of clinicians felt they had failed if the patient died, despite all treatment offered.
I was admitted via A&E when I first had my stroke. I was kept on an acute admissions ward for observation, with a view to a further transfer to a rehabilitation unit. However, I deteriorated and was transferred to Addenbrokes Hospital for neurosurgery to open my skull and drain the bleed. It is now a thought of mine that I was subject to life saving procedures but sometimes wonder if it would have been better if they let me go.
There is a piece circulating, via Facebook, describing a new indicator for stroke recognition emphasising the need for urgency to get the patient to hospital to make every opportunity for survival and a good recovery. The article then makes the point that those who might survive, when perhaps intervention has been too late might be severely disabled and become “hopeless and helpless”. This might be true but reading this as a so called “stroke Survivor” (I don’t like being labelled in this way!). It does not really inspire or motivate me now that I have survived. This articles comment makes me feel especially angry as I, for one, intend to have hope and do as much as possible towards my recovery.
I hope I have been honest in this blog and even more so, I hope it opens up a dialogue about this very difficult subject. It has resonance for me. I hope you feel able to comment on this subject and open up a discussion in the comment section below. I look forward to that.
For more about Peter and his recovery, please follow his blog, https://mystrokejourney.health.blog/