Sir Nicholas Mostyn writes:

I have said on many occasions that the death of a person with Parkinson’s is likely to be prolonged, painful and unpleasant. I said this on the episode about Assisted Dying on Movers and Shakers on 19 October 2024  and on the episode on the same subject in the podcast Law and Disorder on 2 March 2024. I have said it in interviews with the Sunday Times and the Daily Express. It has been referenced in articles in the Spectator and the Observer. None of these references gave rise to any criticism.

Yet, following my repetition of this on BBC News on Tuesday, 12 November 2024 there have been critical comments that I have been either inaccurate or insensitive or both.

I am very sorry about this. Anyone who listens to Movers and Shakers will know that if I have a fault, it is one of relentless optimism. My glass is always described as being half full; I am referred to either as Tigger or Pollyanna. 

These descriptions are not fake. Thanks to the miraculous ministrations of Professor Chaudhuri I am able to live an almost entirely normal life during my waking hours. I can frankly say that I feel more content, more productive and less anxious than I have for many a year. Yet I know that round the corner is the prospect of a death which may involve considerable suffering. Obviously, I am not able to make any kind of prediction of the precise probability of that happening. Suffice to say, I believe it to be more likely than not. Plainly, I am not saying, and I have no evidence for saying, that such an experience is a high probability, let alone a certainty, and I am regretful that anyone may have interpreted what I have said in that way. Clearly many people with Parkinson’s will experience a natural death which does not involve intolerable suffering.

However, I continue to believe that it is more likely than not that a narrow majority of people with Parkinson's will experience an unacceptably uncomfortable death. Put another way, I believe that if you have Parkinson’s you have a greater than a 50% chance of suffering an unpleasant and painful death. Equally, I accept that a significant number of people with Parkinson’s will not suffer intolerably as their lives come to an end. These estimations are pure guesswork and are incapable of precise calculation given the presence of both an objective and a subjective component in the experience of suffering. But they do not seem unreasonable given our knowledge of what so many endure in the advanced stages of the disease. Shakespeare described the final, seventh age of man as “second childishness and mere oblivion / sans teeth, sans eyes, sans taste, sans everything”. Obviously modern medicine can palliate these indignities but the evidence suggests that the challenges are formidable when one is in the grip of the advanced stages of PD. 

Why have I made this point? I have done so to demonstrate the acute limitations of the present Bill before Parliament. It is very unlikely that a clinician would ever give a person with Parkinson’s a diagnosis of a likely death within six months, unless that person has some alternative condition where mortality is more finitely measurable. I have asserted this unlikelihood to be the case because of the mantra that “no-one dies of Parkinson’s; but many die with Parkinson’s”, which I have accepted as the gospel truth until now. 

But I have recently found buried in the weeds of the internet a spreadsheet entitled deathsregisteredsummary2023. This tells me that in 2023 there were 577,000 adult deaths. I was amazed to find that  7,954 of these deaths, that is 1.4% of the total, had the cause of death recorded as Parkinson’s. The proportion is the same (to one decimal place) for the number of deaths caused by PD for the over 50s (7,951 out of 552,792). The  population of England and Wales over 50 years of age is 23 million. There are roughly 180,000 people with Parkinson’s, of whom the great majority are over 50. This is 0.8% of the over-50 population. It therefore appears that about twice as many deaths are recorded as being caused by Parkinson’s as you would expect. I don’t know quite what to make of this, except that we will all have to revisit our standard trope.  

These curious statistics do not in my view change the picture. They suggest  that many of us will be recorded as having died of (rather than merely with) Parkinson’s. Be that as it may,  it will still be a vanishingly rare occurrence for a  clinician to be able to give a diagnosis to a person with Parkinson’s that they will likely be dead in 6 months. 

I consider it is arbitrary and discriminatory, and therefore grossly unfair, that some seriously unwell people will be afforded the facility of being able to plan with their families a dignified, pain-free, death at a time and place of their choosing, but that this is to be denied to almost all people with Parkinson’s. I am sure that those who listened to our episode on Assisted Dying will hold long in their memories the dramatic cross-examination of Lord Falconer by Gillian Lacey- Solymar where she exposed how his Bill so lamentably failed to address end-of-life suffering by those for whom death was not already just round the corner.  

If, in making this point, I have been to too explicit, or have frightened anybody, or have otherwise hurt any feelings then I am truly regretful. But I hope that my critics will accept that I did so with the best of motives namely to give the members of our community the choice, if they want to take it, of planning a dignified pain-free death at a time and place of their choosing.