A mate of mine, a consultant geriatrician, was and is a kind, thoughtful and skilled practitioner who deals with his patients with respect and reflection.
He listens, hears and responds and genuinely cares. However, I remember the time he contracted conjunctivitis for the first ever time. It was horrible: uncomfortable, mildly disfiguring, and hugely irritating. He was contrite – he remarked that he had prescribed medication for conjunctivitis countless times and thought it was a minor problem which his patients moaned about too much, until he felt the itchy, distracting, impairing mess of it!
I am also guilty! In the past 30+ years I have met, worked with, sincerely cared about and supported countless people with disabilities of all sorts. I have also had the odd bad back, but it wasn’t until the past few weeks when I have experienced real disability because of a dodgy knee that I have fully appreciated the full range of implications for people. I can only walk short, very painful distances with a walking stick – my guilty pleasure of a trawl through the charity shops on a Saturday morning are, for now, a thing of the past. Goodness knows I can barely fit any more books in the house, but I do so enjoy the rummaging, the discovery and acquisition of a deliciously second hand book that I either have yet to read or do not possess and I miss that pleasure. I drive many miles a week for my job – that also has become increasingly painful and impacted on my genuine pleasure in my work. The pleasure is still there and the achievements still rewarding, but knowing that I will almost fall out of the car when I arrive at work and will take up to 15 minutes to bring my leg back from the dead before I can walk painfully into my workplace reduces it somewhat. I have to plan my journeys and the parking and the slow warm up o fthe leg , allow extra time for the irritatingly slow hobble, and gobble painkillers, avoiding the ones that make me drowsy but which also happen to be the only ones that impact on the pain! I will gloss over the need to plan for the loo in advance because of the slow pace and ditto the challenge of bathing. This has been my life for the past few weeks and it is driving me to distraction, even though I know will not be permanent – I am so used to dodging about, popping to places, hurrying along that the frustration is palpable . I can barely imagine what it is like for people to endure this for years on end, or to know that the prospect of this and more is on the horizon because of an existing condition. That reduced capacity for life and pleasure, the pain, the dependency.
I watched the Terry Pratchett programme about planned and assisted suicide a while ago. And I am annoyed that it has become “the Terry Pratchett programme” and not ” the Peter Smedley programme”. Mr Smedley was kind and generous enough to share himself with us, yet it is Terry Pratchett who will be remembered in the media. Whatever views we hold about death, suicide and the legal system, or the BBC, Mr Smedley and his wife chose to share themselves with us at a poignant and painful time and that was courageous. Until relatively recently I held gentle but nevertheless properly thought through views about assisted suicide: it was wrong. There were too many risks of abuse for us to go down the road of de-criminalising it, and besides it felt like playing God. As a sometime Catholic it did not sit comfortably in my mind. I have also supported and cared about people who wanted to kill themselves through depression and lack of self worth, some of whom succeeded. It always, without fail, seemed to me to be a waste, whoever they were and whatever their lifestyle. Every one of them had gifts, talents, individual traits and worth that were ebbing away because of their perceived need to die. I have always respected others views on suicide and assisted suicide, but was in the camp of those quietly opposed to it. Almost disapproving at times, on the inside. What a smug idiot I was.
Within the space of three years I have sat by the bedside of first my Father and then this year my Mother as they did not go gently into that good night, spending weeks succumbing to the effects of massive strokes from which there was no way back. My view up until recently has been – and still is, actually – that death does not have to be like that. Given the right support and care a good death and a good end of life is achievable, especially when it is a medical event like a stroke or terminal disease that allows time for the right plans to be put into place and the right support to be made available. However, the almost total failure of health services to manage pain and death for either of my parents leads me to the inescapable conclusion that this is unlikely to happen. Despite the fact that many, many people must have died on those wards, there was nothing to indicate that death was planned for or acknowledged or that the nurses had any meaningful education around care of the dying , and given that the living and aware were also on the whole treated with an appalling lack of dignity and humanity I am confident that the dying would fare no better. I know that, given a choice, both of my parents would have preferred to slip easily and quickly away and not had to endure the indignities and suffering of their final weeks – but this is not possible to include in the assisted suicide debate which focusses entirely on those who are able to express their wishes on the day, in fact as they take the medication. The paradox is also that the people we saw on the programme were aware and alert, and each of them agreed that they were ending their lives earlier than they might otherwise have done as they did not want to risk the very thing my parents were forced to endure – and they had had to endure it because they had lost the ability to state their wish at a given moment.
So, we are left with the glaring fact: if we could ensure a good death, could be confident that death plans could be in place, that the dying would be supported to their dignified end of life and their death, that pain management would be effective, that health services would have the will and the means to enable good dying, assisted suicide would be less relevant. While there are some places where dying is supported, some wonderful hospices and services who dedicate themselves to the essential and rewarding, if challenging, task of supporting people in their natural death, they are a minority. What I have seen in my personal life in recent years has shown me that it is the norm to find inadequate services in the NHS, to find careless staff and stretched facilities and no preparation on any level for end of life care in the routine daily business of hospital wards. I have to ask myself: is it worth the risk of sliding towards my death, or enduring my end of life as a dependant, knowing what I know? What would I do, knowing what I know, having seen what I have seen?
One thing I am sure of in the middle of all the uncertainty: until I have walked a mile in your shoes I will not presume to know what is best for you, even if I believe, as I do, that taking life is wrong. There have been times in the past few weeks when, if someone had offered to remove my leg thereby relieving the pain I would have very quickly accepted. Desperation and disempowerment create a challenging and dark environment. Perhaps our task should be to shed light in that environment, to empower and uplift, to return control and dignity to those who are missing it. I am very sure of one more thing – I will continue to strive to do this and will continue to drive my services and my organisations to achieve this. Not to do so would be appallingly negligent. I will walk a mile in your shoes.