It is a truism that all human life must eventually end. Yet thinking about how we approach the closing phase of our life is a subject that has traditionally not been discussed, though thankfully this is now changing. Many people still prefer to avoid all thought and discussion of the issues, or feel they want to make little contribution to the decision process and ‘let nature take its course’. Other people, perhaps having witnessed the final years of relatives and close friends, find themselves contemplating their own demise, thinking that they do not wish to go through what they have seen their loved ones suffer.
The intervention of modern medicine means that very few of us actually leave things to ‘nature’. Modern medicine seems focused on increasing quantity of life, without fully taking into account the individual’s wishes regarding the quality of any extended life they may be given. This, to some extent, creates the necessity for public debate of these issues. Our genetics, upbringing, and many other factors contribute to the life we have led. Some look back with satisfaction at a long, fulfilling and happy life, while others have been less fortunate.
Regardless of this, there comes a point in the lives of some people when they feel that life no longer has the pleasure or value that it once did, especially for reasons stemming from incurable, deteriorating medical conditions. The future is not something they can face optimistically, based on their realistic assessment of their worsening symptoms. They reach a point where they feel that they would prefer to go to sleep one night and never wake up. The feeling can be persistent, and not the result of a treatable depression.
In MDMD we refer to this state as feeling that one has a ‘completed life’. This document does not provide a prescriptive ‘tick list’ set of criteria for a completed life, but instead identifies some factors that people may find helpful to consider in making their own personal decisions, in their own circumstances. Everyone’s situation is different. In MDMD we respect the diverse range of opinions that people hold, both within MDMD and outside.
The document draws on the experience and opinions of many MDMD members, in the hope that sharing their collective ideas will facilitate a more open discussion in the wider society. The following working definition for a completed life is useful and generally agreed on within MDMD:
‘Elderly, mentally competent individuals may consider that their lives are complete when they have a chronic health problem (or a combination of more than one condition) which is causing them increasingly unbearable, irreversible suffering, with the additional loss of independence, purpose and meaning in their lives, so that they would now prefer to die rather than stay alive, especially as they dread what the future will soon bring.’
It is instructive to consider this definition more closely:
Elderly: How old is ‘old’? The term ‘old old’ has been used to refer to those over 85. Actually one’s health and mental ability are likely to have much more practical significance than any specified number of years. A 70 year old suffering from a severe, debilitating, incurable disease is, in a very important sense, ‘older’ than a 90 year old who takes a daily walk, enjoys reading a newspaper, talking to her neighbours, and is able to largely take care of herself. Some people in their 90’s refuse to feel ‘old’! However, at some point every human life has to end. Some older people will come to terms with approaching that point, giving rise to a feeling that their life is complete.
We contrast this with younger people who, due to an incurable medical complaint, no longer wish to continue living, despite their aspirations being unfulfilled and being unable to complete their life as they might wish. It is more useful to think of these younger lives as being ‘cut short prematurely’, against their will, rather than ‘complete’.
Mentally Competent: A decision that one’s life is complete, which can be accepted by others, requires the individual to be able to comprehend the nature of their medical conditions, and the likely progress of those conditions over time. Inevitably some people will find the gradual loss of mental and physical ability that comes with ageing to be depressing. It is important to distinguish this understandable sense of personal and permanent diminution, from other forms of depression which may be treatable.
For a medical professional to consider assisting a patient to end their life, the professional must be convinced that the patient has fully understood and carefully considered: the facts of their condition; the likely future progress; and all alternative options, including palliative care. Their decision needs to be settled over time. This requires a level of mental competence.
Chronic health problem(s): These may be physical or mental, such as when a deterioration of memory and mental capability makes life intolerable, or will do soon. For a completed life it is the individual’s health problems that are the root cause of their diminishing quality of life. Increasingly unbearable, irreversible suffering: ultimately this is for individuals themselves to decide.
Suffering can be physical, mental or emotional. While much physical suffering can be alleviated by appropriate painkillers and palliative care, mental and emotional suffering may not be so readily eased. It depends on the individual’s personality and experience, and they alone can judge. How much suffering someone can tolerate is never really known until the situation presents itself. Experience of the Death with Dignity Law in Oregon suggests that some people, when they know they have a dignified exit strategy available if/when they need it, choose to tolerate a lower quality of life for longer. In other jurisdictions like in the UK, without such an option, some people choose to take pre-emptive action earlier, while they still can, to avoid future unbearable suffering.
Loss of independence: The degree to which an individual is prepared to accept help is highly variable. Some people do not want to be ‘looked after’ by others on anything other than a temporary basis while they recover from a treatable illness. Linked with this may be a strong reluctance to give up control, for example over decisions concerning their future care. They may dread being treated in a way that suits ‘the system’ rather than the individual.
Loss of purpose and meaning: What gives an individual purpose in their life is, of course, highly personal. It changes through life as the individual experiences different roles in work, parenthood, grandparenting and retirement. Elderly people may find purpose and meaning in seeing younger relatives, playing games, conversations with friends or simply watching birds in a garden. When chronic health problems mean that the things that previously filled their time are no longer possible, and new pleasures in life cannot be found, an individual may understandably be left feeling that there is nothing left that they want, or are able, to do.
Dread what the future will soon bring: The actual dying process – deteriorating gradually until the body gives up – can be a very unpleasant, drawn out, and undignified process. Many people do not want to have to suffer this, nor wish their relatives and close friends to remember them this way. Witnessing loved ones dying unpleasantly may have informed their ‘end of life’ wishes.
There are several other factors which can contribute to a feeling of having a completed life, in addition to those covered by the definition above.
Bodily decline: Even if these have not been diagnosed as chronic health problems, things like poorer mobility, stiffer joints, poorer vision and hearing loss can all contribute to an enforced withdrawal from normal life, and thus an impairment of quality of life.
Loss of identity: When an individual becomes less able to remember events and people from their life there is a sense in which they cease to be the person they were. Self-awareness that this is happening can give a sense of one’s personality irretrievably decaying.
Loss of personal dignity and self-esteem: This can come as a symptom of many chronic health problems. Incontinence is a clear example which can severely impact an individual’s perceived quality of life.
Declining social network: When an individual’s partner and close friends have died or are no longer able to communicate effectively, the elderly person can be left feeling isolated. When an individual no longer feels connected to others they may well feel that their life is complete. Some may continue to find positive ways to relate to others – even if it is just smiling at someone to help brighten their day – but for others such opportunities may be insufficient.
Feeling a burden: Some people, knowing they are approaching the end of life, do not want to feel a burden – on their relatives, on the NHS, or on social services. We should respect and accept this as an understandable part of their caring, considerate, personality, but equally accept that others have no such qualms about dependency. The feeling of being a drain on others may be in terms of time, money, resources, emotion, or some combination of these. It may simply be that they would prefer their life savings to be spent on their beneficiaries (including charities), rather than their continued daily care in a life they would prefer not to be living.
It is important to distinguish between genuine altruism, and elderly people being made to feel they have a duty to die, against their will, by uncaring relatives, carers, doctors, or society. One way to tell the difference between these two is if someone has repeatedly recorded their desire not to continue living when their quality of life has irreversibly diminished to the level where they become heavily dependent on others. This statement could be made as part of a Statement of End of Life Wishes.. Although not of legal effect, if this record is initiated and witnessed at a time when the person was clearly mentally competent and not acting under pressure of others, there would be no doubt about the person’s independent wishes for their end of life care.
For some people, who have decided that for them, their life is complete, the next logical step is a medically assisted suicide. This is already legally possible in Belgium, The Netherlands and Switzerland. Not everyone shares this view and we respect everyone’s personal opinion. Within MDMD we aim, eventually, for a law change which will provide medically assisted suicide as an option for those who are incurably suffering or terminally ill, within careful safeguards, and with professional counselling for the person considering this option. We recognise that some people seeking assisted suicide do not feel their life is complete, but instead that it is cut short by an incurable illness or condition that has permanently reduced their quality of life to a level which for them is unacceptable.
People concluding that their lives are complete is a growing issue. The European Court of Human Rights recognised this in their statement on April 29, 2002 as part of their judgement in the case of Diane Pretty, from the UK, who was slowly dying due to MND:
‘In an era of growing medical sophistication, combined with longer life expectancies, many people are concerned that they should not be forced to linger on in old age or in states of advanced physical or mental decrepitude which conflict with strongly held ideas of self and personal identity’.
Advances in medical science have cured many early killers such as heart disease and some cancers. This leaves a much larger proportion of people than in previous generations who die with degenerative diseases like dementia, or who simply get gradually weaker and weaker as a result of the ageing process until they succumb to an infection which kills them. In the course of their gradual deterioration, some people may quite rationally conclude that their lives are complete long before they actually die.
June 2016 My Death, My Decision www.mydeath-mydecision.org.uk
People have different views. MDMD believes individual choices should be respected. Many people would agree that aspects of a good death include:
- Being free from physical pain
- Dying in a place of their choosing – often at home rather than in hospital
- Being with close relatives or friends.Just going to sleep peacefully and not waking up
- Dying without a prolonged period of old age dependency on others for basic needs such as feeding and personal care
- Dying before permanently losing fundamental mental capabilities such as knowing where we are, understanding what is happening to us, and being able to recognise and communicate with friends and close relatives
- Dying when they feel their lives are complete and they feel ready to die
- Dying without the fear that they may become trapped in an intolerable situation they can’t be released from, despite the best palliative care available
- Knowing that the people who are close to them are able to accept their dying.
From the MDMD perspective, a ‘good death’, for some people, means taking control of the manner and timing of their end, with professional guidance and assistance. Painlessly slipping into unconsciousness and death, without having to fight to stay alive as long as possible when quality of life has permanently diminished unacceptably for that person.
The Dying Matters coalition was set up in 2009 by the National Council for Palliative Care, to promote public awareness of dying, death and bereavement, and in so doing to help people have a ‘good death’. While many of the ‘good death’ criteria listed on their website are echoed in the items at the start of the list above, Dying Matters stops short of discussing some of the later criteria, the logical consequence of which is allowing people the option of legalised medically assisted dying.
If you have other good death criteria which you think are widely shared, please tell us.
‘Mental Capacity’ is not a complicated concept and people other than doctors can assess it, though when there is doubt or argument, it is obviously wise to get an expert in. Basically, Mental Capacity means the ability to make decisions. In a MDMD context, it means the ability to make decisions about accepting or declining medical (and surgical) treatment and about assisted dying, if that is being considered. Mental Capacity may also be important for decisions about making a will or managing finances. While they involve similar considerations, they are not relevant to this discussion except to make the point that Mental Capacity is context-specific. For example, a patient may not be able to understand a complex financial transaction but may be able to understand a simple yes-no treatment decision.
One reason why Mental Capacity assessments are usually not complicated is that the law – specifically, the Mental Capacity Act of 2005 – presumes that an individual has Mental Capacity unless there is evidence to the contrary on a balance of probability. That evidence will usually involve a medical diagnosis of mental illness (including dementia) or of a physical illness that affects brain function, such as a head injury, delirium caused by a high fever, a brain tumour, or a brain infection such as meningitis or encephalitis. However, such a diagnosis, even if unchallenged, does not by itself create a presumption that the patient lacks Mental Capacity. It must also be shown that the illness or condition has effects on basic abilities like awareness, memory and understanding that make decisions impossible or invalid. The Act also requires that patients be given appropriate help to make decisions, so that those with impaired vision, hearing or mobility are not unjustly excluded.
To quote from the advice given by one of the doctors’ professional insurance organisations:
‘To be able to make a decision a person should be able to:
Understand the decision to be made and the information provided about the decision. The consequences of making a decision must be included in the information given.
Retain the information – a person should be able to retain the information given for long enough to make the decision. If information can only be retained for short periods of time, it should not automatically be assumed that the person lacks capacity. Notebooks, for example, could be used to record information which may help a person to retain it.
Use that information in making the decision – a person should be able to weigh up the pros and cons of making the decision.
Communicate their decision – if a person cannot communicate their decision – for example, if they are in a coma – the Act specifies that they should be treated as if they lack capacity. You should make all efforts to help the person communicate their decision before deciding they cannot.
A patient’s decision is not invalid simply because a doctor disagrees with it, even when a serious psychiatric illness has been diagnosed. The classic case involved a long-term schizophrenic patient in Broadmoor – a secure hospital for what used to be called the criminally insane. His doctors thought that his leg needed to be amputated to save his life. The patient refused but was not over-ruled because he clearly understood the risk. In the event, he kept his leg – and survived. However, someone with a more acute mental illness – especially if it were severe enough to require compulsory admission – might be regarded as lacking capacity because his or her state of mind was too changeable or confused for proper assessment, or because it was likely to change with appropriate treatment – voluntary or otherwise. Such situations rarely arise in end-of-life contexts, especially where an Advance Decision makes the patient’s considered opinion very clear.
The main exception is when the mental illness is dementia that is so far advanced that the patient cannot retain any memory of previous discussions or is unable to have any sort of coherent discussion in the first place. That is why anybody who wants to plan for the possibility of an assisted death in Switzerland if they get Alzheimer’s or similar disorders should be aware that both the decision and the journey need to be made well before the dementia reaches a stage when Mental Capacity is lost, or likely to be lost. Alzheimer dementia usually progresses slowly and fairly steadily, thus allowing time for careful thought and planning. Arteriosclerotic dementia – caused by repeated small strokes – progresses less predictably and may worsen quite suddenly following a larger stroke, or a stroke affecting a part of the brain that is particularly important for decision-making or communication.
A case that was much discussed at the time involved a patient who was alleged by her psychiatrists to lack the Mental Capacity to refuse kidney dialysis, without which she would quickly die. She said repeatedly that she had had not merely a good life but rather a wild and selfish one and did not want to stay alive now that she had lost her looks, her health and the ability to attract the sort of rich husbands on whom she had successively relied for her extravagant and hedonistic lifestyle. Her psychiatrists said that her wish to die was due to a treatable and reversible condition, possibly caused by her underlying physical conditions. The judge disagreed and stated specifically that he preferred the opinion of an independent and experienced legal professional who had also interviewed her. The patient was allowed to die and entered history as the ‘Champagne Suicide’.
Dr Colin Brewer
Chair of My Death, My Decision’s Medical Group
People on all sides of the right-to-die debate want to protect ‘vulnerable people’. But the simple phrase masks a number of important issues.
Who are ‘vulnerable people’?
We should start by recognising that there are degrees of vulnerability. We are all vulnerable in some ways – to reckless drivers and clever advertising campaigns for example. Some people are naturally warier and therefore less vulnerable than others.
At the other end of the spectrum, those who have lost the use of their limbs are vulnerable to physical abuse. Those who have lost mental capacity (as defined by the Mental Capacity Act) as a result of stroke, coma, or dementia, for example, are vulnerable to people who have to make their decisions for them.
Of the extremes identified so far, ‘vulnerability’ as it relates to any decision regarding assisted dying, only really applies to those without mental capacity. Other classes of vulnerable people who need protection relating to assisted dying include:
- People currently suffering from a treatable depression
- People with learning disabilities
- People whose judgement might be temporarily impaired due to a recently changed situation e.g. bereavement, or a life changing accident People whose judgement might be temporarily impaired due to side effects of medication.
We should be very wary of labelling all disabled or elderly people as ‘vulnerable’ in so far as it relates to decisions about the end of life. Many, while they may have physical vulnerability, or have lost sight, or hearing, are fully mentally competent and would find it unacceptably patronising to be labelled ‘vulnerable’ in a mental sense.
Many older people experience a slowing of mental function, and failing memory, even if this has not been diagnosed formally as dementia. However, even those diagnosed with early stage dementia retain their mental capacity for a while. These people become gradually more dependent on others for advice and help with making major decisions. This gradual loss of mental function comes at just the time when decisions may need to be made about ongoing medical treatment, care needs, and even the possibility of an assisted death. These people need support in making decisions from people they can trust and who understand and respect their long-held views and personality.
The Mental Capacity Act is clear about the extreme cases of mental vulnerability. Jurisdictions that have introduced right-to-die legislation have a requirement of mental capacity as one of their main safeguards. But mental capacity is not a black and white issue, so does this requirement do enough to protect this broader class of ‘vulnerable person’ whose mental abilities are fading significantly or are temporarily impaired, but have not crossed the line defined by the Mental Capacity Act? Many people are concerned that the answer may be ‘no’.
For large decisions, many of us like to discuss the issues with others, and double check other people’s opinions before arriving at our final choice. This is normal human behaviour. As some people get older they get more dependent on others to assist in their decision making. This makes them potentially vulnerable to the people they depend on to offer them advice, and reliant upon that advice being in their best interests. They are still deemed to have mental capacity, in the legal sense, but their mental capability is significantly reduced. They have moved into the grey area where the decision as to whether they retain mental capacity has become more questionable. We need to ensure that these people are properly protected.
What (and who) do vulnerable people need to be protected from?
Some of those who oppose legalising assisted dying argue that this type of vulnerable person, who is increasingly dependent on others to assist in their decision making, is open to persuasion to choose to end their life by the very people they trust. The argument is hypothetical – there is no evidence of this happening in the jurisdictions where medically assisted deaths are legal. However, the suspicion that this could happen is still a concern. Trusted family members may typically stand to inherit from the elderly person’s estate. Their inheritance may be being diminished by care home fees. The elderly person may be very demanding on the trusted family member’s time. The motives are there – hence the suspicion and wariness in society.
Equally, those opposed to changing the law argue that medical professionals are also trusted advisors of the elderly. They have shortages of beds and a limited budget to manage. Might they not, at times, be tempted to persuade a person to choose to end their life if the option were available? Again there is no evidence of this happening, but it is a plausible scenario.
But what if someone genuinely decides that they really do want to receive life ending medication. Those close to them may not want to lose their relative – wanting them to keep hanging on to life, long after the time when the elderly person truly wants to let go with a little help to ensure a peaceful end. They are vulnerable to being persuaded to keep going against their will.
The medical profession has a natural desire to do whatever it can to keep people alive. But there is a risk here too that vulnerable people (who still have mental capacity, even though their mental ability has significantly reduced) will be persuaded to accept life sustaining treatment which, while technically possible, is not what the patient wants, and is not in their best interests in terms of their long-held views about death.
The eminent philosopher and lawyer Ronald Dworkin wrote in 1993, ‘making someone die in a way that others approve, but he believes is a horrifying contradiction of his life, is a devastating, odious form of tyranny.’ Vulnerable people may be persuaded into this. They need our protection.
There is a very real danger that well meaning people (who may be close friends, relatives, or medical professionals) may consider that a vulnerable person who does not have the same opinion as they do needs ‘protection’. It can even lead to the circularity of believing that the fact that the person disagrees, in itself demonstrates their ‘vulnerability’ or lack of mental capacity. This is unacceptably paternalistic.
This principle was recognised in a recent court case in which a medical authority sought the right to amputate a paranoid schizophrenic patient’s leg as they believed that not doing so would endanger the patient’s life, but the patient refused. The request was rejected by the judge. In delivering his ruling, Mr Justice Peter Jackson said: ‘The temptation to base a judgment of a person’s capacity upon whether they seem to have made a good or bad decision, and in particular upon whether they have accepted or rejected medical advice, is absolutely to be avoided… Any tendency in this direction risks infringing the rights of that group of persons who, though vulnerable, are capable of making their own decisions.’
So we can see that a vulnerable elderly person needs protection both from those who may wish to shorten their life and from those who wish to extend it, if that is not in line with their long-held wishes.
The law is currently very weak in protecting people against those intent on prolonging a vulnerable person’s life beyond their wishes. The best that is on offer is an Advance Decision (AD) which allows them to refuse specified treatments. But this only applies when the person no longer has mental capacity, so does not properly apply to those vulnerable people we are considering here. It must be all too easy for well-meaning people to persuade these vulnerable people who are ready to die to ‘fight on’ against their true wishes. The extent to which this happens is very hard to establish as it takes place in a context where the assumption is that keeping people alive for as long as possible is the best option.
The issues of protecting vulnerable people are complex, but we may conclude:
- There are degrees of ‘vulnerability’ that a person may have while still retaining legal mental capacity. We are all ‘vulnerable’ to some extent. It is only where someone is approaching the limits of legal mental capacity that we should be justifiably concerned about the possible undue influence of others
- Assessing whether someone is sufficiently vulnerable to warrant some form of protection could only be done on a case by case basis by experienced professionals, and would naturally be linked with an assessment of mental capacity. This grey area of mental capacity should perhaps be recognised as ‘with capacity, though with a level of vulnerability that reasonably causes concern’
- In assessing vulnerability regarding life ending decisions, it might be helpful to consider how the individual has made other recent decisions. For example: is there evidence of a reduced ability for the person to make decisions independently?
- We should be wary of imposing our own values on others. To do so can be paternalistic and deny an individual’s autonomy
- Few people make important decisions in isolation. They take into account the views of trusted relatives, friends and professionals – without necessarily agreeing with them. This is normal behaviour
- Vulnerability works both ways – the aim of ‘protection’ should be to uphold the individual’s wishes from unreasonable pressure or persuasion by people wishing to shorten or extend a person’s life in a way that is contrary to the person’s wishes.
- A wish for an assisted death when someone’s quality of life is below the level they can tolerate, and where there is minimal realistic hope of improvement, should not, of itself, indicate a level of vulnerability that reasonably causes concern.
Suicide is defined, by the Merriam dictionary, as ‘the act or an instance of taking one’s own life voluntarily and intentionally’. It has not been a crime in England and Wales since 1961 and was never a crime in Scotland. The definition covers many different situations.
We distinguish between two types of suicide:
‘Emotional suicide’ results from someone being deeply troubled by a situation that, with appropriate help, guidance and support, could have been resolved. These desperate situations arise because of circumstances that are overwhelming to the individual such as mental health problems, severe financial problems, or clinical depression. We strongly encourage anyone who feels suicidal in this way to see their GP or phone the Samaritans. Loss of life in these situations, often violently, is tragic and should be prevented by all possible means.
In contrast to this is what we call ‘Rational Suicide’. This is where someone, due to worsening health conditions, and after careful consideration of the facts, decides that their life is complete and their quality of life has deteriorated incurably below the level they are prepared to accept. In these circumstances, it is understandable that some people choose to end their lives rather than endure days, months, or possibly years of very poor quality of life. This is most likely to affect those who are elderly. The decision should not be reached until all other avenues such as palliative care and support in living with reduced abilities have been carefully considered and found unacceptable to the individual.
Some of those opposed to a change in the law to permit assisted dying, argue that because suicide is legal and anyone can choose to end their life if they wish, a change in the law is unnecessary. We believe this view is cruel and heartless. We do not advocate this as an acceptable solution. The people who rationally wish to end their lives are typically elderly and are suffering from one or more incurable medical conditions which they find intolerable. A compassionate society should not expect such people to end their lives themselves, alone, without assistance. We campaign for a more humane approach for those whose idea of a good death is painlessly going to sleep and never waking up, at a time of their choosing, in a comfortable environment, possibly in the company of close relatives or friends.
Research by Dignity in Dying published in October 2014 estimated that over 7% of suicides in the UK were of people who have terminal illnesses. That is six times as many as go to Switzerland to end their life. This does not include people with illnesses which, though not ‘terminal’, are incurable and reduce their quality of life below the level they can tolerate, so the real proportion of ‘rational’ suicides is likely to be much higher.
Unlike some other right-to-die organisations which produce well-researched books on non-violent ‘rational suicide’ and ‘self-deliverance’ methods, MDMD does not offer information on the practicalities of ‘do it yourself’ (DIY) rational suicide.
The story of Avril Henry, widely reported in the media, is an example of someone who used illegally obtained drugs to end her life. However, her drugs were tracked by the police – who raided her house in search of them. The case illustrates some of the dreadful consequences of the current law. First, it can make someone feel they have no option but to resort to obtaining drugs illegally abroad to obtain the good death they wish for (or at least a better death than other available options). Second, if the authorities become aware of illegal drug importation they have a duty to investigate and uphold the law, and potentially protect the individual. This is not the sort of ‘help’ a desperate person needs to ensure they have a good death. The way this was done in this case, by a police raid, seems highly insensitive and inappropriate.
The statistics on suicide attempts without professional medical help to obtain appropriate drugs show a high failure rate. It has been estimated that for every successful attempt there are between 20 and 50 failed attempts. An example of a failure was reported in the 2016 BBC documentary ‘How To Die: Simon’s Choice’, about MND sufferer, Simon Binner. At one point Simon attempted to hang himself but failed. A desperate act causing distress to himself and his family, which would have been avoided if there were an appropriate law in this country that allowed his end of life wishes to be carried out in the UK. [Following this incident, Simon’s wife helped him go to Switzerland to end his life with legal medical help at Lifecircle.]
If you are feeling suicidal or are concerned about someone else then you can contact Samaritans for free any time from any phone on 116 123. This number will not show up on your phone bill. Or you can email email@example.com or go to www.samaritans.org to find details of your local branch where you can talk to one of their volunteers face to face.
One of the concerns over legalised assisted dying is the risk that someone requesting it may be suffering from treatable depression. Is it possible to tell the difference between someone rationally requesting an assisted death when they feel their life is complete, and someone so irrationally depressed that they feel suicidal and are in need of treatment? To attempt to answer this, we first need to look at what is meant by ‘depression’ and related psychiatric conditions that carry a significant risk of suicide.
The term ‘depression’ only became widely used after the 19th century. By the 1960s, it was commonly divided between ‘endogenous’ and ‘reactive’ types. The former had no obvious or sufficient underlying causes such as work, marital, or personality problems and physical illness, and was seen as probably reflecting some as yet undiscovered biochemical upset in the brain. That is probably true but despite much research, we still lack really convincing biochemical explanations.
Research (much of it British) showed that other than the lack of obvious precipitating factors, there was often no major difference between ‘endogenous’ and ‘reactive’ symptoms. That should surprise nobody who has seen someone absolutely devastated by the loss of a partner, a child, a future, or a reputation. The majority of suicides are the result of such personal catastrophes. They may be more likely to occur in people who are less resilient to such difficulties than the large majority who don’t respond by seeking to end their lives. There is no prima facie reason why we should regard that vulnerability as having mainly biological rather than mainly personal or psychological explanations. If there are biological factors, we have no drugs that diminish them.
Psychiatric definitions of ‘depression’ have concentrated increasingly on the symptoms of depression while largely ignoring possible or even obvious precipitating causes. However, there has been argument in the field over whether at least some kinds of ‘depression’ should be regarded not as diseases meriting pharmacological and/or psychological treatment but as an understandable and entirely logical reaction to unhappy events. Bereavement has been a case in point.
This might not matter too much if antidepressants had large and specific cheering-up effects for the majority of people with depression, but they don’t. If they did, we might expect to have seen significant falls in the number of suicides, like the falls in other life-endangering conditions when effective treatments appeared. There is little evidence that the large and fairly steady increase in antidepressant prescribing has had any obvious effect on reducing suicides. Previously it had been a favoured method. At the milder end of the depression severity spectrum, antidepressants have also had no obvious effect, for in spite of the growth of antidepressant prescribing and of counselling and psychotherapy, ‘depression’, together with ‘stress’ and ‘anxiety’ (for which antidepressants are often prescribed anyway) is now the third largest reason for being off work and receiving sickness benefits. ‘Serious mental health problems’ (mostly manic-depressive illness and schizophrenia) account for barely a twentieth as much sickness benefit.
Manic-depressive illness, now often called ‘bipolar disorder’ is a more obviously ‘biochemical’ mental disorder, at least in its severer forms. Being uncharacteristically depressed for weeks or months in response to major misfortune is common and understandable but being uncharacteristically overactive, euphoric, loud, jocular and spendthrift for weeks at a time and often in the middle of the night as well is neither. The classic pattern is episodes of depression or mania lasting for weeks or months with variable but often lengthy periods of normality in between. Some have mainly depressive episodes; others mainly manic.
Many people improve – somewhat or considerably – after receiving antidepressants but almost as many improve after receiving placebo tablets and there are several controlled trials comparing antidepressants with placebos that show no advantage for the real tablet compared with the dummy one. Overall, however, trials mostly show that between one half and two-thirds respond well to the dummy, another 10-20% at most may respond to the antidepressant and the rest don’t respond much or at all. A recent World Psychiatric Association review questioned even that 10-20%. Unsurprisingly, trials funded by drug companies consistently get more positive results than those done by independent and traditionally sceptical academics.
Suicidal feelings are common in both understandable and non-understandable unhappiness. Some sufferers may be helped by antidepressants, but for others, time and a little help from one’s friends often sees them disappear. These comparatively short-lived suicidal feelings, from which recovery is usual, are very different from the desire to die expressed by many people experiencing subjectively intolerable distress due to terminal, incurable, or intolerable conditions. People with ‘ordinary’ suicidal feelings, resulting from some form of ‘depression’, and who are in contact with doctors usually ask for help to make those feelings go away. That help may be social (e.g. better housing, getting employment), pharmacological, various sorts of psychotherapy, or all three.
In very sharp contrast, the sort of people who contemplate or request an assisted deathdo not want any of these interventions. Unlike the ‘ordinary’ patients, whose suicidal feelings are often short-lived or even impulsive, they have thought long and carefully about their situation. In nearly all cases of terminal or progressive illness, they first thought about what they might do in this situation long before the disease first appeared. Ordinary depressed patients tend not to be cheerful or jocular but most people who request a right to die would prefer to live if their afflictions could be cured or greatly relieved and save themselves and those close to them a lot of additional suffering and distress, beyond that inevitable due to an unavoidable death. Unlike ordinary depressives, they often eat and sleep well if their disease allows it and they continue to take pleasure in their usual hobbies and relationships. On the standard depression questionnaires, they usually score well below the cut-off point for a diagnosis. It is therefore not usually difficult for a suitably trained doctor to distinguish people suffering from depression with a reasonable chance of recovery from those seeking an assisted death.
Because both unhappiness and antidepressant prescribing are common in our society and because most people requesting assisted deaths are over 60, it sometimes happens that such people have, in previous years, been given a diagnosis of ‘depression’ and have sometimes received antidepressants. The Swiss assisted dying organisations, such as Dignitas and Lifecircle, are always meticulous about requiring a psychiatric assessment in such cases, even if the antidepressant was prescribed not for depression but for pain relief, where they are sometimes modestly useful in patients who are not clinically depressed.
In any case, doctors involved with patients contemplating assisted deaths should routinely look for any signs that the request is the result of a recent and atypical change of mood and not the obvious outcome of a gradual conclusion that their life is complete, coupled with a long-held belief that assisted dying would be their idea of a ‘good death’.
While most requests for assistance at the end of life reflect underlying physical conditions and are not due to psychiatric disorders, a very small proportion of requests in Holland and Belgium are made because of severe and chronic psychiatric illnesses that have not responded to many years of appropriate treatment and have left the patients consistently longing for death. In most cases, they have already made several serious suicide attempts. Symptoms were usually present from childhood or early adolescence and did not improve with age and experience. Diagnoses typically included a personality disorder as well as intractable depression or obsessive-compulsive problems. Barely half of all such requests are granted but as with assisted dying for physical conditions, knowing that the option is available enables some patients to keep going. In deciding when an assisted death may be appropriate in psychiatric cases it is important to take into account that incurable psychiatric illness can cause patients and their families even more distress than the worst phases of cancer and for much longer. The Dutch film-maker Elena Lindemans recently made a documentary called ‘Mothers don’t jump off buildings’. It was about her own mother, who did exactly that after her repeated pleas for an assisted death had been rejected. Lindemans made the film after she had tried for ten years to repress her very traumatic memories of the event and get on with her life. In Holland and Belgium patients can talk meaningfully about their wish for death with experienced clinicians, in the knowledge that an assisted death is a possible outcome. Another moving video, created by the Economist, shows how these extremely challenging and tragic cases are handled with great sensitivity and professionalism in Belgium.
Dr Colin Brewer
Coordinator of My Death, My Decision Medical Group
An excellent discussion of the arguments for and against Assisted Dying in cases of purely psychiatric illness is presented in an article by Ryan Tanner, a member of the Canadian Joint Centre for Bioethics Task Force on Medical Assistance in Dying: Mental Illness and Access to Assisted Dying, February 15, 2017
In 2015 dementia became the leading cause of death in England and Wales according to the Office of National Statistics (ONS). Since then the rate has continued to rise. The latest figures for 2018 show more than 1 in 8 of all deaths (12.8%) are caused by dementia, and for women over 80 this rises to 1 in 4.
The term ‘dementia’ covers a lot of different illnesses. Alzheimer’s disease accounts for 75% of cases, vascular dementia (a series of mini-strokes in the brain) for 15-20%, with the remainder including frontotemporal dementia, Huntington’s disease, and Lewy-body dementia. What they all have in common is a gradual loss of mental capacity, typically over many years, leading to eventual death, unless the patient dies of another cause before then. Death from dementia occurs on average around 7 years after initial diagnosis.
In the early stages, the sufferer retains mental capacity and can live independently, though they will need increasing amounts of support. In the later stages, mental capacity is lost. Patients are unable to remember recent events and may be unable to feed themselves. 24-hour care is essential, often in a specialist nursing home. Patients may be unable to move, or may need to be kept in a secure environment to prevent them from wandering off and getting lost. The ability to recognise friends and family is lost. Meaningful communication becomes difficult or impossible. In some cases, patients may lose inhibitions and turn violent or abusive. Although some patients appear to resign themselves gracefully to their declining abilities, others find the increasing confusion and lack of control very upsetting and frightening.
Few people would hope for this end of life. An opinion poll in March 2019 found that 88% of those surveyed thought an assisted death, at the patient’s request, was acceptable for those with early-stage Alzheimer’s disease while the patient still had mental capacity, in at least some circumstances.
Without a change in the law, people who receive a dementia diagnosis have stark options. Some, like Sir Nicholas Wall, take their own life, in private, without incriminating others. He did so, violently, after moving into a care home, while he still could. Many of those who try to end their life fail, as movingly portrayed in the film Still Alice.
Others, like Alex Pandolfo, make plans to go to one of the Swiss organisations offering anassisted death. In Switzerland assisted deaths can be given in cases of dementia provided the patient has mental capacity at the time of death. Once dementia has been confirmed and the details accepted, Swiss organisations give a ‘green light’ for the assisted death to take place. This in itself gives relief to those contemplating this option. The problem for dementia sufferers is that they then have to judge how long they can wait. Going too soon deprives them of a period of acceptable quality of life, albeit with declining capabilities. The risk is that if they leave it too long they will lose mental capacity, depriving them of the Swiss option.
Those who do not make their arrangements before they lose mental capacity are at the mercy of their relatives and carers. A very disturbing story of a husband who shot his wife dead in her nursing home, claiming that she ‘had suffered enough’ shows what lengths some people can go to. The wife was suffering from dementia, though in this case the husband was also found to be suffering from dementia himself. He was found guilty of manslaughter and sentenced to 6 years in a psychiatric hospital.
Recent attempts to change the law in England and Wales on assisted dying have proposed restricting assisted dying to those who both have mental capacity to make a life-ending decision at the time of their assisted death, and also have a life expectancy of six months or less. Such a law would be of no use to the 1 in 8 people who die of dementia as, by the time their life expectancy is reduced to six months, they may well no longer have sufficient mental capacity. This is one of the reasons why MDMD campaigns for a broader law. (Indeed such a restricted law would be discriminatory, as outlined in a BMJ opinion piece by two leading medical professionals.)
There is strong opposition to a change in the assisted dying law in the UK. One of the arguments used by those who oppose a change is that people who are dependent on life-sustaining medication can legally refuse it, thereby causing their life to end. This option is not available to those with dementia unless they have other conditions which cause them to be dependent on life-sustaining medication. When asked how someone could avoid the end stage of dementia without a change in the assisted dying law, Baroness Ilora Finlay, a professor of palliative care and a strong opponent to a change in the law, said: ‘Putting it bluntly, there’s no law against committing suicide.’ When pressed on how a dementia sufferer could do this she went on: ‘there are people ordering drugs over the internet now and taking overdoses’. Although she was very clear that she was not suggesting that people should do this, the mere suggestion of this illegal and highly risky approach is frightening and shows a very surprising lack of compassion. Surely there must be a safer way to ensure people have a good death?
Although Switzerland is the most well-known country to admit foreign nationals for assisted dying due to dementia, a few other countries now provide this option for their citizens. Belgium and the Netherlands not only allow anassisted death for dementia sufferers in the early stages when they still have mental capacity, but they also allow euthanasia for people with dementia who have written a valid advance decision requesting euthanasia when they reach a particular point in their cognitive decline after they have lost mental capacity. At first sight, this seems like a promising approach, however, there are a number of concerns:
- It puts a huge responsibility on relatives and doctors to make a decision on behalf of the patient. When has the patient reached the right point? Cognitive decline is not a smooth process. People have ‘good days’ and ‘bad days”. At some point, the ‘bad days’ outnumber the good. But is that the right point? And how can others judge this accurately?
- What if there is disagreement among relatives and/or doctors?
- In practice, doctors and relatives may not feel able to carry out the wishes expressed in the patient’s advance decision – so the person may not get what they wished
- In an important sense, the dementia patient who has lost capacity is no longer the same ‘person’ as they were. Their personality has changed – possibly in a way that accommodates their new situation in ways that their old self couldn’t anticipate. Should their prior wishes still be carried out? This situation is rather different from that of an advance decision to refuse treatment for someone in a long-term coma, as in that case the patient is no longer conscious.
Whether the Belgian and Dutch law is sufficiently safe and reliable for those who have lost capacity is a matter to be determined over the next few years. There have certainly been some difficult situations that have challenged doctors and the courts.
These concerns are some of the reasons behind MDMD’s objective of campaigning for a change in the law that applies only to mentally competent adults. This is a safer approach for all concerned and is sometimes referred to as the “5 minutes to midnight” approach where the patient ends their life before losing mental capacity, but when this is predicted to occur fairly soon. In practice, euthanasia in late-stage dementia on the basis of an advanced decision is very rarely used in the Netherlands or Belgium. In 2017 in the Netherlands, 166 early-stage dementia patients died with medical assistance, compared to only three late-stage dementia patients.
Canada introduced its Medical Aid in Dying (MAiD) legislation in 2016. In 2019 after much consideration, the first few applications of MAiD for early-stage dementia patients took place. The medical community there is developing guidelines to help doctors carefully assess the MAiD criteria in dementia cases safely.
The Alzheimer Society in Canada are respectful of dementia patients considering MAiD, making this statement in October 2019:
‘The right of persons with dementia to advocate for access to MAiD, including through advance requests should be respected. The Alzheimer Society will continue to inform persons with dementia about the legislative processes related to MAiD and any changes to the law.’
It is particularly interesting that they consider the situation of advance requests. Currently, the MAiD law in Canada requires the applicant to have mental capacity at the time of the assisted death, though there is discussion in Canada about the possibility of broadening this.
Dr Ellen Wiebe is a Canadian MAiD practitioner. She gave a very interesting talk to Friends At The End (FATE) in November 2019. The video is available here. In the Q&A that followed, in answering one question asked about the Canadian approach to dementia. (At 36:33 in the video.) Dr Wiebe carefully explained the difficulties and how Canadian MAiD practitioners could, with extreme care, provide MAiD to some dementia sufferers, provided that they retained mental capacity. She explained how, through a series of assessments, doctors could advise on when the patient was nearing the time when they would lose mental capacity, the 5 minutes to midnight’ time. Dr Wiebe stated that she had been able to give MAiD to 8 dementia sufferers. She went on to discuss the possibility of extending the law to allow MAiD by an advance request, after mental capacity had been lost. Interestingly she says
‘I would refuse to provide [MAiD] at this point [after mental capacity has been lost] because I want somebody to tell me ‘Yes, I’m ready to die today’. Every single one of my patients has been able to do that… I need that.’
This echoes the concerns above and the reasoning behind MDMD’s campaign policy.
Dementia raises many questions for advocates of assisted dying. On the one hand, many people understandably wish to avail themselves of an assisted death to avoid what for them would be an unacceptable quality of life in the late stage of the disease. This is especially true of those who have seen what the illness can do to their loved ones. At his mother’s funeral Phil Cheatle, MDMD’s Lead Campaign Commentator, said: ‘No one should be sad at Joan’s death. It was the release she had been waiting for, for far too long. We had already lost the person we knew. Our parents teach us many things in life. The last thing my mother taught me was how not to die.’
On the other hand, there is the desire to protect people from making unsafe decisions when their decision-making capacity is declining. MDMD welcomes the efforts now being made in Canada in developing appropriate procedures.
An excellent book giving a much deeper analysis of the issues around assisted dying and dementia was published in October 2019. O, Let Me Not Get Alzheimer’s Sweet Heaven! – Why many people prefer death or active deliverance to living with dementia is written by Colin Brewer, a retired psychiatrist who has assessed nearly every British dementia patient who applied to go to Switzerland for a medically assisted death in the last few years.
Within our supporters there are some who are classed as disabled under the Equality Act 2010. We highly respect their place in society and their collective huge contribution to it. However, we believe that as the law stands under the 1961 Suicide Act, some disabled people do not have equal rights about end of life choices, as they cannot seek help to end their life if that is their wish, even where they are not physically able to end it themselves. In order to give disabled people equal rights, we propose that any new assisted dying legislation should also recognise that some may not be physically able to cope with oral methods of taking medication such as those adopted by US States including Oregon and California.
In February 2018 The Royal Society of Medicine held a meeting entitled ‘Choice at the end of life: Current practice and overseas developments’, in which many speakers represented both sides of the argument or a neutral stance. One of those speaking against legalising assisted dying was the late Juliet Marlow who represented ‘Not Dead Yet’, a network of disabled people opposed to voluntary euthanasia or assisted dying. She argued eloquently that society, in general, fails to include the disabled and she had a fear that society would expect the disabled to request assisted dying. She favoured instead that disabled people should utilise the option of withdrawing or refusing treatment if they wish to hasten their death. She called for better funded social and palliative care and promoted a social model of disability which emphasized that they don’t have a problem that needs fixing. She stated that disabled people’s medical condition was not the problem, the problem is how society views them. She believed in a good death with palliative care. Her talk was followed by a doctor with 15 years of hospice experience, who stood up and said that there is still a lot of suffering despite the very best palliative care, he had received hundreds of requests for an assisted death, one patient even jumped off the building to his death.
Reasons why the disability rights movement might oppose assisted suicide by Dr Tom Shakespeare.
1 The disability rights movement is anxious about pressure being exerted on disabled people to end their lives against their will, and is anxious about a slippery slope to non-voluntary euthanasia. There are historical and contemporary precedents for so-called ‘mercy killing’.
2 There are fears that disabled people will be pressured to request assisted suicide, although evidence from Oregon and the Netherlands is inconclusive.
3 Many disabled people live throughout their lives with conditions which are defined as terminal. It is feared that it will be easy to extend the rights or cultural expectation of assisted suicide to disabled people in general, not just people who are in the terminal stage of a terminal illness.
4 Many disabled people are living with the pain and dependency, technological and physical, which is cited as evidence for the rationality of a decision by others to seek assisted suicide. They fear that their own lives will be devalued, or may even be at risk, as a result of the decisions or attitudes of others.
5 Many disabled people feel vulnerable and depressed. Many disabled people have at different points wanted to end their lives. With support and over time, most disabled people have come to terms with their impairments and learned to accommodate to their restrictions, reporting a good quality of life and no longer wishing to end their own lives. They fear other disabled people making irreversible decisions and denying themselves the possibility of living a better life as a disabled person.
6 There is a fear that making assisted suicide available will send a message that it is logical and desirable for disabled people to end their own lives. This will influence the attitudes of people who live and work with disabled people. These messages and attitudes in turn will feed back into disabled people’s own views about their actions and choices, making it more likely that they will choose assisted suicide.
7 The disability rights movement has developed a social model understanding of disability, in which people are disabled by society, not by their bodies. This has made it harder for the disability rights community to engage with debates about illness, impairment, and end of life.
MDMD believes that it is up to society and the Government to set the benchmark for how disabled people are viewed and helped going forward. For too long people with disabilities have been subjected to subjugation, injustice, economic deprivation, and had to fight for equality.
We urge the Government to invest more funding in social care, palliative care, hospices, and mental health. When someone becomes disabled they should receive immediate, individual assistance and therapy to aid them with how to cope with their situation, with regular assessments, and further help given if their condition deteriorates. They should have sufficient help offered so that they never feel they are a burden on their loved ones.
It is up to every one of us individually to critically examine how we view disability. Along with disability, think of ageing, grieving and even dying; it is all about acceptance. Acceptance about one’s situation and acceptance by society of those less fortunate than themselves.
We should all write Advance Decisions and log them with our GPs so that in the event of us becoming incapacitated the medical profession know exactly what level of medical intervention we would like for ourselves.
There should be no attempt to value another’s quality of life, only the individual; they can assess their own quality of life. MDMD is striving for the option of a strictly controlled process, incorporating numerous safeguards, to aid dying for those who request it, so that those who wish to carry on living get all the help and encouragement they possibly can. With sufficient safeguards there should never be a single case whereby non-voluntary euthanasia is exercised under legislation of assisted dying and society should ensure that the disabled do not feel pressured to request assistance to die prematurely.
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