prognoses
The clock is ticking …
Big week this week. Tomorrow (29 November) Westminster Parliament will debate and vote on the Assisted Dying Bill in England and Wales – or more properly The Terminally Ill Adults (End of Life) Bill.
NB. Scotland has formulated and debated its own version of the legislation for assisted dying which is currently being examined minutely by Holyrood’s Health Committee, although they will be unable to proceed to formally legalising assisted dying without authority from Westminster.
It’s an emotive and conflicting topic, and I can see arguments for both sides. But it’s by no means as straightforward as some suggest. Of course, no one wants people to die horrible painful undignified deaths, but is medically assisted dying the answer?
Proponents of the proposed new bill claim that safeguards will be stringent; in essence:
- Patients must be over 18, registered with a GP for at least 12 mths
- 2 independent doctors must be involved in the decision
- They must ensure there is no coersion or pressure, the decision is voluntary and informed and a settled wish, and the patient is fully aware of other options, eg palliative care, and that they can change their mind at any time
- An expert should assess mental capacity
- The patient must declare their wishes for death on two separate occasions, witnessed and signed
- A high court judge must approve the case
- The Chief Medical Officer must monitor and report on how legislation works in practice.
Stringent …? Ahem. That’s just how such bills were introduced in countries like Netherlands, Canada, Belgium. Within a few short years the safeguards had already been eroded. Scary statistics and reports show a huge escalation in numbers dying this way, and they include couples choosing to die together, young people with autism or anorexia, people who are depressed or lonely but otherwise well, young children. Indeed in the Netherlands plans are in process to allow the healthy elderly (>75) to be helped to die if they undergo 6 months of counselling.
And there’s another stumbling block which hasn’t had much airing. Human rights barristers and legal scholars have warned that slippage is not just likely but inevitable, because to deny other groups of people access to assisted dying would be seen to contravene the European Convention on Human Rights, and be discriminatory. So initial qualifying conditions are sure to expand here as they have done elsewhere regardless of the care taken with framing the law.
Even if all the intentions are really sincere, there are issues too with the criteria themselves. We all know medical prognoses can be wildly wrong. Who can really confidently predict death will occur within six months? Senior practitioners and experts in palliative care agree, it’s impossible until very much closer to the end than ‘months’, and research has verified this fact. Then, who is going to train doctors in this additional work? How will the medical world deal with doctors whose consciences don’t allow them to be party to this service, even referring patients on? Are there going to be enough high court judges available and willing to add this task to their existing load? Prominent legal experts have already questioned the role of the judiciary in what is essentially a medical matter.
Then there’s the whole question of viable alternatives. Hospice care is an amazing service and certainly one I personally support wholeheartedly. It focuses on living well right to the end. It’s sensitive to all aspects of a person’s well being – physical, emotional, spiritual, psychological. It includes caring for the whole family. What’s more, it is already assisting people to die humanely and compassionately. But – and it’s a colossal but – we all know that palliative care is woefully underfunded and its availability seriously limited. Only a small fraction of its total cost is paid for by the Government. In order to survive at all it must rely heavily on fundraising, and the escalating cost of living crisis has meant the generous public now have less to donate. As a consequence of this proposed new legislation, it’s feared governmental support will be reduced further if hospices deline to sign up to ending lives in line with the new bill.
Another avenue that’s under-utilised is that of Advance Directives or Living Wills, legally binding documents that state a person’s wishes for the future in certain circumstances or conditions where they might not be able to convey those choices for themselves. Withdrawing or withholding treatment is legally permissible already. However, only a small proportion of the population fill out such an expression of their wishes.
Should we then return to the pre-Shipman era where doctors could give sufficient opiates to end pain and distress, even if the double effect was to hasten death? This was generally regarded as a kind and compassionate response to intractable suffering before suspicion clouded the supposed intentions of healthcare providers.
This is by no means an exhaustive discussion of the issues, but hopefully underlines the need for huge care in deciding on this matter while there is still time. As one doctor put it: It’s a dangerous trajectory from which there can be no return.
Experience and empathy
They say no experience is wasted on a writer, and there’s certainly an element of truth in this. But as a writer, it’s important to recognise that reaction to events and happenings varies hugely, a universal response should not be assumed (goodness, I sound positively Jane Austen-y!!).
I’ve been very conscious of that reality this year. Let me explain.
In June I was told I had cancer. Hmmm.
I needed immediate treatment. OK.
The tumour was removed within twenty-four hours of diagnosis. Wow! Impressive or what?
The Director in charge of the whole department rang himself to give me the results and talk me through the proposed action and answer my questions. Hello?! I’m even more impressed. What did I do to deserve this?
I was given a number to ring any time. Is this really the cash-strapped, people-poor NHS?
A wonderfully warm, secure and seamless blanket of care, kindness and support, was thrown around me by a dedicated and highly skilled multidisciplinary team of professionals. There are no words to do justice to the fantastic, way-beyond-the-call-of-duty service I received.
A couple of times I did protest mildly that my circumstances didn’t warrant such a massive response; I was fine with this. My protestations were politely but firmly quashed. I was assured my circumstances – and I – did justify all this expertise and compassion. Why? Because apparently the majority of people are shocked and traumatised by this particular diagnosis. They need kid-glove treatment. So the team routinely start from that base line.
Why then am I different? It’s not an act. It’s not bravery. Not even a consequence of my faith. Nor does it stem from naivety. Two of my brothers have had cancer and been through much worse times than me; bearing the scars and after-effects still today years later. Two of my sisters-in-law sadly could not be saved and I watched their terminal decline with enormous sadness. Over the years many dear friends with cancer have suffered, died, some shockingly young, leaving children behind. And in my professional life as a health care professional I’ve seen up close and personal, enormous grief, loss and pain attached to experience of this disease.
OK, I may be calm about this diagnosis for myself, but I’m pretty sure that I’d have been far more traumatised if it had related to my children or grandchildren – young, with their lives ahead of them. I’ve had a brilliant innings, beyond the biblical allotted span. Even if this thing has already done its insidious evil work and will eventually beat me, I can’t complain. So I’ve been somewhat bemused by all the messages of concern and comfort and reassurance sent to me during and since my two surgeries. However, they tell me a lot about the fear this illness engenders even today when medical advances have changed the prognoses in many types of malignancy dramatically. Now that I’m back on my feet readjusting to life, I get exclamations – almost accusations! – of doubt as to the genuineness of my energy and normality. Some well-meaning people want to force me backwards into a ‘fragile invalid’ box. Clearly I don’t conform to their conceptions of a cancer patient.
Linda Gillard, who is herself an author, and who’s been a terrific support to me in that context, has made me think again, though. She had treatment for breast cancer five years ago which has left her with chronic pain and disability. It has radically affected her writing career as well as her quality of life. Indeed her whole experience has been in a different league from mine. Sharing her thoughts on social media recently, she described her reality.
I went from diagnosis to mastectomy in less than 3 weeks. 5 years on, I still haven’t made my peace with what happened, I still feel traumatised, I still don’t have my life back because cancer left me disabled with chronic pain which apparently will never go away.
This post isn’t meant to be a self-pitying whinge, it’s a plea for greater understanding of PTSD. For some people who survive cancer, that survival comes at a terrible cost and the nightmare – mainly fear of recurrence – persists long after eyelashes and pubic hair have grown back. In my case the fear was/is not of death, but of further chemotherapy (and for those who sailed through chemotherapy, well, I’m very happy for you, but you probably didn’t have breast cancer chemo, which I’m reliably informed is The Worst.)
But it was the best of times, the worst of times… I’ve never known such compassion, from my inspiring surgeon (“If you’re going to get breast cancer, this is the kind to have”), to my oncologist who seemed as dismayed as I was that my neuropathic pain wouldn’t go away, to the magnificent nurses in the Macmillan suite who – almost apologeticaly – pumped cherry-coloured poison into my veins and checked on me every few minutes to see how I was coping. (Thank you, Norma! You will have forgotten me, but I will never forget you or your professional kindness.)
Her eloquent and courageous confidences have given others permission to share their abiding worries and traumas. Which all helps me to recognise that I am the one who is most out of sync here. And it’s reinforced the importance of reading, reading, reading; listening, listening, listening some more, in order to gain real empathy with those who are challenged by the issues I explore in my books.
I was reminded in some small way of Sabine Dardenne, a twelve year old Belgian girl who was kidnapped by a psychopath and subjected to the most appalling and degrading abuse. When she was discovered after eighty days incarcerated in a filthy ‘hell hole’, everyone expected her to be severely traumatised and in need of sensitive psychiatric help. Instead all she wanted was to get back to normality.
The general view was that I was ill. I was probably in shock, but I wasn’t ill. When talking about me, people would say, ‘She’s got her feet on the ground,’ and that’s probably true. You can’t rewrite history, and I know I can never wipe out what happened, but the best medicine is just to get on with your life and sort it out yourself. At the time, no one understood that …
In fact, my parents and my sisters were the ones who needed a psychiatrist, not me: all of them ended up having years of therapy, so they were the last people I could confide in.
Sabine is one truly remarkable girl whose story (told with help from translators in I Choose to Live) makes humbling and impressive reading. I am certainly not in her league but I do understand where she’s coming from.