Chapter headings and chapter - Slippery Slopes - from O, let me not get Alzheimer’s, sweet heaven! Why many people prefer death or active deliverance to living with dementia. Foreword by Henry Marsh. Skyscraper Books. 2019.

C O N T E N T S

Foreword by Henry Marsh 1

Preface 4

PART 1 THE PROBLEM: 9

1. Introduction 11

2. The Varieties and Trajectories of Dementia 27

3. Brain, Mind, Memory, Personhood and Identity in Dementia 38

4. What Dementia Looks Like 48

5. What Dementia Feels Like 64

6. Will You Still Need Me, Will You Tube-Feed Me, When I’m Ninety-Four? 72

7. What Do We Want? Euthanasia! When Do We Want It? As Soon As We Need 24-Hr Care!! 86

8. Even Worse Than Murder 114

9. Slippery Slopes: are they always a bad thing? 136

10. Leave it to Palliative Care and Hospices? 148

11. Families in Conflict 157

12. The Genetics Of Alzheimer’s 166

13. Not Everyone Can be a Hero; Not Everyone Wants to be a Hero

Lessons from the Holocaust 172

14. The Really Difficult Future Debate 180

15. A Time to be Born and a Time to Die 189

PART 2 RESPONSES TO DEMENTIA: 197

16. Doing Nothing 199

17. Doing Something 204

18. Doing it Yourself 210

19. Doing it Abroad 221

20. A Final Word About Doctors and Our Privileged Access to Self-Deliverance 234

APPENDIX 1 If Only Osvald Alving Could Have Had Penicillin! 245

APPENDIX 2 Flow-chart for decision-making 249

APPENDIX 3 Useful Addresses and Contacts 251

APPENDIX 4 Specimen advance decision/living will for dementia 254

APPENDIX 5 Blank Advance Decision/Living Will 259

Acknowledgements 263

About the Author 267

Index 269

CHAPTER 9: SLIPPERY SLOPES.

 Opponents of deliverance typically invoke at least two separate slippery slopes. One criticism focuses on the observation that when deliverance is permitted, the number of people who want it increases. Let us immediately remind ourselves, though, that by legal definition and in all the relevant jurisdictions, these people must have the Mental Capacity to make decisions about the current and future management of their conditions. As a rule, their views about deliverance have developed over several years and they are not under any pressure from others to choose deliverance. With very few exceptions, they are not suffering from anything that could be called a mental illness, even by the most zealous defender of DSM-5’s diagnostic free-fire zone. Even those exceptions must have been confirmed to have Capacity and are therefore rational enough to make decisions about their treatment. Deliverance, for most users, simply means that after much thought, they have exercised their right to choose an alternative end-of-life scenario to the one that is becoming increasingly and unacceptably unpleasant – or looks as if it will do so before much longer. Why is it either surprising or undesirable if it attracts more than a very few followers? Critics of this kind may not oppose deliverance on principle and might even use it themselves if the need arose but often it seems that they do not fully accept the argument from autonomyas it affects the relationship between doctor and patient– an argument that acceptsthe basic, presumptiveright of adults(and of younger people with sufficient knowledge and understanding) to make their own decisionsaboutaccepting or not acceptingmedical interventions, even against medical advice.In my experience, critics of autonomytend to be at least somewhat religious (the religious attitude studies cited above bear that out) and though not necessarily as doctrinaire as those who think rational suicide is a sin, the concept still disturbs them at some fundamental level. They also tend to argue that current British (or English) law and the Swiss Option are a satisfactory compromise because the law acts as a deterrent and the DPP can be relied on to be merciful.  

The other slippery slope is the one onto which, it is alleged, large numbers of people with physical and mental disabilities, who have never expressed any desire for deliverance from their conditions, will be encouraged to enter by family members, stigma and social pressure, or by the State that spends so much money on their careand is always looking for economies. In this scenario, the disabled will not so much walk or crawl reluctantly onto the slope but will be pushed onto it willy-nilly in their wheelchairs, reaching out in vain for ethical and legal handholds as they accelerate down towards the final ski-jump. This scenario is invoked by both religious critics and non-religious ones like the right-of-centre, atheist, gay, libertarian journalist Douglas Murray – a man I greatly admire for his brave defence of our hard-won freedom to criticize all religions, including Islam. For Murray, the ‘slippery slope’ is evidently a daily concern.[1]“I think continually about this” he writes. “Perhaps this will become the dominant vision of life in Britain…. But I cannot wish for it. There’s the slippery slope, the uncertain old who may feel pressured, the pathetic cases of depressed teenagers choosing death, and the shift in meaning it brings to life as well as death.” Despite his atheism, Murray seems to feel that life must have some sort of cosmic purpose and meaning beyond our relationships with our fellow-humans – living, dead or yet to be born.[2]As he notes, most religions do offer such cosmic purposes but I suspect that many or even most of his fellow-unbelievers sympathise with the view of the philosopher Sir Isaiah Berlin that “As for the meaning of life, I do not believe that it has any: I do not at all ask what it is, for I suspect it has none, and this is a source of great comfort to me — we make of it what we can, and that is all there is about it.”[3] However, Murray also worries about the slow but steady increase in Dutch and Belgian deaths by voluntary euthanasia (our opponents often leave out that crucial adjective) and their equivalents in states where deliverance is legal. I will deal with that objection first.  

One explanation for the increase is surely the same one that accounts for the gradual – even hesitant – adoption of many other new ideas, technologies and freedoms: including, I suppose, the relatively recent freedom to come out as a gay journalist without anyseriouslegal or professional consequences. Take cremation, for a particularly relevant example. Although it was customary in many Eastern cultures, it was illegal in Britain (give or take the odd heretic) until late in the 19thcentury. As with voluntary euthanasia in the 1930s, a small group of the Great and Good in Victorian Britain (which, like the founders of the Voluntary Euthanasia Society,also included a royal surgeon) formed a society in 1874 to promote cremation but it was not until 1902 that it was legalized in the face of much opposition, later than in Italy and France but before Portugal in 1920 and well before Greece in 2016. In 1905, over 99% of British families buried their dead. By 1960, that had fallen to 40% and it is now around 30%. Some religions – including. Orthodox Judaism and Islam – still prohibit it and in Greece, the Orthodox church tried to block its recent legalisation. Today, there may even be a financial incentive to cremate rather than bury but though cremation aroused very high emotions a century ago, few people now seem to worry about it and those with strong feelings are entirely free to choose burial.[4]

For those who are concerned about safeguards against abuse – which includes everyone I know in the debate – another relevant analogy is the way in which motor cars were hesitantly allowed onto British roads. As every schoolchild knows, they were at first limited to 4mph and had to be preceded by a man carrying a red flag. That may have been a sensible precaution, especially on country roads where horse-drawn wagons moved slowly and cantering or galloping horses gave plenty of audible warning but the precaution was quickly relaxed. Soon, anyone could get a driving licence without even a test (my mother, an anxious and over-cautious driver, was theoretically free to drive heavy lorries) but in the 1930s, driving tests were introduced. In other words, checks and balances were adjusted as experience of the new - and dangerous - technology increased, for in 1930, there were over 7000 deaths on British roads. By 1950, with many more cars, that dropped to 5000 and despite an eight-fold increase in car ownership since then, a combination of drink-driving laws and better cars, roads and trauma care has taken the figure to well below 2000 for the last several years. The same process can be seen with everything from unregulated activities such as foreign travel, extreme sports and sales of avocado and garlic to heavily regulated ones like votes for women, contraception and the right of heretics to become Members of Parliament. (Catholics in 1829, Jews in 1858, atheists in 1888.) It happens regularly when things that were previously unthinkable or unsayable – or just not on most people’s radar – become matters of public debate.

Is it surprising if more and more patients suffering from unpleasant and intractable or terminal conditions, in jurisdictions from the Netherlands to Oregon and Australia, have taken advantage of the freedom the law allows them to choose the time and manner of their deaths in the way that many doctors are able to do? There are obvious advantages to be had from dying peacefully, predictably and without anxiety about frightening terminal symptoms such as fighting for breath and palpitations; without beingconfused, hallucinating andbarely conscious for several days because of high doses of morphineand sedatives; or of diminishing the dignity of the final farewell and the carefully chosen last wordsby becoming confused orby an all-too-noticeable attack of vomiting or faecal incontinence. Those who, for whatever reasons, prefer the natural, drawn-out but often unpredictable version are free to choose it. Palliative care and hospices exist in part to cater for their tastes. Not everyone wants a planned and medicalised death and far more people evidently prefer not to think too much – or at all - about death but the rise in popularity of medicalised death is no more surprising than the growing popularity of cremation, or of major medical involvement at the other end of life, as discussedin Ch 15.

Murray also compares the increase in deliverance in countries that allow it to the increase in abortion that followed its decriminalization in Britain in 1968. It is true that within a few years, more women were having abortions that some people who were not opposed to reform had expected and some of those people think the number should be reduced. For others, abortion remains the equivalent of murder and therefore all abortions are not merely wrong but irredeemably wicked as well. There are two responses to the comparison with abortion. The first regards it as one of the rights of women that have been recently acquired (historically speaking) after aeons of male dominance. Machismowas a necessary and universal survival trait in competing tribal societies but it is less universally important for our survival now and less appropriate for a morepeaceful andgender-equal society. Most anti-abortionists were the spiritual heirs of the people who had opposed contraception with equal fervour a generation or two earlier. Some were the same people. Nearly all supposedly beneficial social changes – ‘progressive’ or not – have disadvantages as well as benefits. The abortion laws have been blamed for the failure of European societies to breed at replacement levels, but falling pregnancy rates are a feature of all societies that enable women to obtain education, employment, contraception and a measure of freedom from the control of their husbands (and clerics). The legalisation of abortion is just one factor and a fairly small one.

The second is to note the embarrassed silence of anti-abortionists when one points out a major paradox of protests and political opposition that stem from a belief that abortion is wicked, that it should be reduced (or become once more illegal, as it still is in much of South America) and that human life begins at fertilization when the unique genetic combination that will produce a new and unique human being takes place. The following paragraph or two may seem a little tangential but bear with me, because abortion is also very relevant to the arguments of one of the most emotive and visible opposition groups.– the disability lobby – which I will discuss shortly. To be morally consistent, anti-abortionists should really be complaining and demonstrating not outside abortion clinics but outside family planning clinics that recommend and insert – as nearly all do – various kinds of Intrauterine Contraceptive Device (the IUD or ‘coil’). It has been beyond doubt since the early 1980s that although IUDs can prevent pregnancy by preventing fertilization, an important additional mechanism is that they also destroy tiny embryos afterfertilization and also wipe them off the wall of the uterus if they get as far as implantation.[5]  In other words, they are abortifacients. If British abortion figures applied to the whole 500 million-plus population of the EU, there would be about 2 million abortions annually.  If the 150 million women throughout the world who have IUDs have just one early IUD-induced abortion annually – which is almost certainly an underestimate – their 150 million-plus abortions completely dwarf that figure. 

If one abortion is bad, then 150 million must surely be not only 150 million times worse but also 75 times worse than 2 million yet anti abortionists – including successive Popes - rarely mention the paradox. The reason is that they know that hardly anyone cares about the moral status of something that is barely visible to the naked eye but they cannot admit that without admitting that in practice, theydon’t seem to care much about it either; and that therefore ‘murdering a potential Beethoven’ doesn’t matter provided it’s only a little one. Once they concede that early abortion isn’t something that arouses their anger much, or at all, the argument changes from whether abortion is right or wrong to the stage at which it starts to become an ethical concern. That, in turn, becomes an argument about pain, awareness, neurodevelopment, memory, and even aesthetics but since nobody remembers the unpleasant business of being squeezed through the birth canal or – if a Jewish or Muslim male – of being circumcised without anaesthesia a few days after birth, the ‘argument from pain’  (dramatized in the 1970s by anti-abortionists in a film called ‘The Silent Scream’) falls very flat.[6]

This brings me to the first of Douglas Murray’s concerns – the people ‘who may feel pressured’ by the mere existence of legalizeddeliverance, among whom, he implies, arethe disabledas well as those who are merely old.You may still feel that all this abortion stuff is tangential to the debateabout deliverancebut though it is not often mentioned by them, abortion is also particularlyrelevant to that section of the disability lobbywhichthatcampaign very mostvisiblyand loudlyagainst deliverance. It is composed mainly of people with severe and often congenital physical disabilities and some (but by no means all) of their non-disabled advocates. It is the principal owner and promoter of the argument that if deliverance is legalized, disabled people will be put under strong pressure to agree to die, though I do not think they have ever produced a single example of themedically-assisted deathof a conscious, adultpatientarising from such pressure. There are people with severe disabilities among the active members of right-to-die societies, who demand that they should not be denied the choices that are open to the ‘abled’. A very small number of relatively young severely disabled British residents have indeed chosen the Swiss option. Others have chosen self-deliverance and sometimes succeeded, including a young paraplegic who diedinside his specially-adapted houseafter deliberately setting fire to it, other methods having failed. It is possible that a modest increase in suchcasesof deliverancemay occur but, as Ian Brassington pointed out in his criticism of Yuill, a belief by individuals or society that it is a good thing not to suffer from MS or quadriplegia is entirely compatible with providing good and constantly improving care to people with disabilities and to encourage them to integrate with the ‘abled’ majority where possible and vice versa. (Similarly, one can question the large-scale immigration of people with very different cultures and customs, as Murray does, while insisting that those who have arrived must be treated well and helped and encouraged to integrate with the host community.) 

Yet a far bigger theoretical threat to the peace of mind and self-esteem of the disabled is one that they seem to have dealt with easily and with very little public debate. It is one thing to argue that disabled people have rights to good treatment or social service provision, easy access to public spaces and to be protected against discrimination. Who would disagree with that? It is quite another thing to suggest – as some disability activists sometimes appear to do – that no mother or father should try to avoid having a disabled child, and that profoundly and congenitally deaf children or children with Down syndrome or severe spina bifida, for example, should be just as desirable, in prospect, as children without these conditions. There are arguments – mainly religious - against both pre-natal testing and abortion but they do not deter the large majority of prospective parents in all countries where testing is they areavailable. Even in countries with laws that permit abortion only for very restricted reasons, the prospect of giving birth to a seriously disabled child is usually one of those reasons. As I discuss in more detail in Ch 15, developments in antenatal and pre-implantation diagnosis have almost abolished the birth of children with some major types of disability that were once common, notably in Iceland. If that kind of discrimination against the disabled has upset the disability lobby, they have kept rather quiet about it. There is some debate, but not much and no campaigning that remotely matches their other concerns. One Icelandic geneticist was quoted as saying: “I don't think there's anything wrong with aspiring to have healthy children, but how far we should go in seeking those goals is a fairly complicated decision”. For most mothers and families, it is evidently not very complicated in practice. 

One other slippery slope – allowing people not only to choose deliverance in early dementia before they lose Capacity but also to request and receive it at some stage after they have lost it - will be discussed in Ch 14.As we have seen, something like it already exists – sometimes voluntary but mostlyinvoluntary - in a legal twilight zone but many people seem reluctant to discuss the implications of what happens in that zone every day and night in Britain and everywhere else with health services. By mentioning the topic at all, my aim is no more than to start and encourage a conversation about a very difficult problem. However, even moderate familiarity with treating, nursing or just caring forpeople with dementia makes it difficult to argue that the severely demented never experience severe suffering. Furthermore, when people as diverse as Quebec nurses and caregivers and Conservative journalists like Matthew Parris think the problem is worth researching and writing about, I don’t feel I need to apologise for doing the same. Nevertheless, the overwhelming priority in Britain is for laws that will make it unnecessary for any patient or family member to say to a doctor – as many do and many more think – ‘you wouldn’t allow a dog to suffer like this’. My basic argument for including dementia in the wider debate about deliverance is that the concept of suffering needs to include the existential and anticipatory kinds to which dogs – perhaps happily for them – are, as far as we know, immune. I shall be very pleased but still slightly surprised if even limited British deliverance legislation reaches the statute book in my expected lifetime. If at some stage that law is passed and later expanded, we know that electorates can change their minds, though so far, no electorate has repealed such laws[7]andDutch doctors are still theworld’smost astrusted and highly regarded(“Out of all the countries we found surveys for, it was Dutch patients who found it hardest to fault their doctors, especially GPs”.[8])It also appears that a large majority of the Dutch electorate both strongly support the existing law and practice and are willing to accept some cautious expansion that extends the concept of autonomy to the treatment of dead personalities, just as cremation extended it to the treatment of dead bodies. There is, of course, one more slippery slope but it is slippery with faeces, urine and – not infrequently – pus from bedsores that in very thin and frail old people can sometimes eat through as far as the underlying bone. For many people with early dementia contemplating their future, these are important additional reasons for not wanting to risk getting onto the slope that most concerns them. 

A final point. There are many laws and regulations aimed at minimizing the risk of a wide range of harms to citizens at all stages of life. We rightly expect those laws to reduce the risks that are inherent in most human activities but few people expect them to reduce the risks to absolute zero. If that were the case, nobody would be allowed to take a train or a plane, since fatal accidents still happen occasionally even in the most technologically advanced countries. Still less would anybody be allowed to drive a car. Despite rigorous checks – which are a routine professional reflex as well as an implicit legal requirement - surgeons still occasionally operate on the wrong limb or organ, or leave swabs or instruments inside the patient but we do not therefore outlaw surgery. Similar disasters occur when patients receive the wrong medicines or the wrong doses. The laws and regulations aimed at safeguarding the process of deliverance should be as good as their equivalents for other irreversible interventions. However, unlike decisions about high-risk surgical and pharmacological treatments, which often need to be made quickly, planning by patients for situations that might lead them to request deliverance often begins -  and should begin – well before any signs of disease appear. As with all regulations, there is a balance to be struck between protecting patients (and professionals) against mistakes, misunderstandings or malice and making the procedures so burdensome and protracted that patients cannot access deliverance at all or have to experience significant periods of severe suffering before obtaining it. There is remarkably little evidence that laws allowing patients to choose medical aid in dying are abused. 

 REFERNCES
[1]https://www.spectator.co.uk/2015/08/the-atheist-case-against-assisted-dying/

 [2]Murray D. The strange death of Europe: immigration, idemtity and Islam. London, Bloomsbury 2018, 266 and passim.

[3]Cited in Cartwright J. new.spectator.co.uk/2015/10/fear-loneliness-and-nostalgia-a-return-to-johannesburg/  

[4]As – for entirely non-religious reasons – I would. Cremation seems such a waste of gas and I like the idea of being usefully reincarnated as a tree following a woodland burial.

[5]Brewer C. The mortal coil. BMJ 2012; 345 doi: http://dx.doi.org/10.1136/bmj.e7551  

 [6]Though not quite as flat as the book ‘Babies for Burning’, which absurdly claimed that the fat from aborted foetuses was being systematically used for making soap – a claim exploded by the Sunday Times. The human foetus has hardly any fat until the last few weeks of pregnancy and most abortions are done between 8 and 12 weeks when the foetus may be no more than 2cm in length. 

[7]The reversal of the first legislation that permitted MAiD– in Australia’s Northern Territory in 1996 – was overturnedon a technicality by the Federal Parliament, not by theNT’svoters or legislators.

 [8]Kmietovicz Z.  R.E.S.P.E.C.T.—why doctors are still getting enough of it. BMJ2002v.324(7328); 2002. Jan 5PMC1121933