Authoring our ends

For the last two weeks the Court of Protection has been hearing a request from the family of a severely brain damaged who is in a minimally conscious state, to allow her to die.  The official solicitor, who is representing the woman – known as ‘M’ - as her litigation friend, opposes the request.  Until the judgment is published (probably later this week, or early next) we won’t know all the arguments and evidence advanced on both sides.  However, the press are attending the hearing and the family are reported to have said:

‘She can’t move, she can’t speak, she’s fed through a tube, she can’t even enjoy a cup of tea.

'She’s got no pleasure in life; her daily routine is just being taken out of bed, put in a chair, showered, then put back to bed.'

‘There’s no dignity in it.'

‘It’s not a life, it’s an existence and I know she wouldn’t want it.’

They are also reported to have said that ‘she would never want to live a life dependent on others, even if she retained her mental faculties.’

The court is also reported to have heard evidence from M’s carers, that ‘she sometimes showed ‘awareness’ if gently teased when her wheelchair was being pushed by a man. ‘Sometimes she will make a higher sound... And she will broaden her facial expression – to me that’s a bit of a smile’.  According to reported medical evidence from the official solicitor, the woman responds to touch and is medically stable; she is not near the end of her life.  Unlike many patients who are permitted to die, M is able to breathe independently and she is not in a persistent vegetative state (PVS).  The family believe she feels pain and discomfort, but by virtue of the fact M is able to experience pain and discomfort the court will have to consider how the process of withdrawing artificial nutrition and hydration (ANH) may be experienced by her.  A nurse is reported to have said that the family do not fully understand how ‘unpleasant’ this may be.

I want to start by outlining some of the legal issues in the background to this case, and outline how differently they are managed in other European jurisdictions.  Then I want to discuss some of the core ethical and philosophical issues at the heart of this case.  It’s a very complex matter, so it’s likely to be quite a long post.  It also contains some details about end of life processes that might be quite distressing to read.

End of life decisions: The legal landscape in England and Wales

Over the last few decades the courts have heard several cases that touch upon a person’s right to commit suicide, to bring to an end suffering from painful and debilitating conditions.  In 2002 the European Court of Human Rights rejected Diane Pretty’s request for her husband to be granted immunity against prosecution if he assisted her in committing suicide (Pretty v UK).  Pretty suffered from motor neurone disease, and wanted to avoid the suffering and indignity that accompanies the final stages of the disease.  The court found that the state was not obliged under Article 2, Article 3, Article 8 or Article 14 of the Convention to permit assisted suicide in such cases.  More recently, Debbie Purdy successfully brought a case against the Director of Public Prosecutions that required the Crown Prosecution Service to disclose the criteria they applied in deciding whether to prosecute people who had assisted in the suicide of a loved one (Purdy v DPP, 2009).  The criteria can be found here, but importantly the case did not decriminalise assisting suicide, much less create an obligation on the state to support someone in doing so.  In the UK active euthanasia is not permitted, although treatment with the primary purpose of alleviating suffering may be used for terminally ill patients even if it may hasten a person’s death (‘the doctrine of the double effect’).

The cases of Pretty and Purdy were powerfully argued on the basis that they should retain autonomy in choosing how to die, and the awfulness of the 'natural' deaths that awaited them.  There was no question that at the time of the hearings Pretty and Purdy were fully competent, and understood the implications of their choices.  In this respect, cases where patients are in a PVS or are minimally conscious are fundamentally different; these patients are incapable of deciding or expressing their choice.  In England and Wales a fully competent person always has the right to refuse consent to medical treatment, and through such means they may knowingly hasten their death.  For people who lack mental capacity, however, decisions regarding treatment are complex and governed by the Mental Capacity Act 2005.  End of life decisions will also engage Article 2 of the Convention, and quite possible Articles 3 and 8.  Since the case of Hillsborough victim, Tony Bland, the UK has permitted the withdrawal of life prolonging treatment from people in PVS (Airedale Hospital Trustees v Bland, 1992).  The court heard evidence that Bland had no awareness, experienced neither pleasure nor pain, and there was no prospect of improvement.

In England and Wales the Mental Capacity Act 2005 code of practice states that permission must be sought from the Court of Protection before withdrawing ANH from people in PVS.  This is not a requirement contained within the Act itself, and Peter Bartlett writes:

‘It is not obvious that such applications are legally required, however. At common law the authority of the court to insist on such applications was at best dubious.’

I doubt many hospitals would want to test the authority of the court on this point.  I think it should be sensibly assumed that this guidance also applies to people with other consciousness disorders than PVS, as in the case of M.  Last year an unnamed hospital trust got its wrists slapped for withdrawing life sustaining treatment from a man (wrongly) diagnosed to be in PVS, without seeking the permission of the court first.  The case was reported by the official solicitor (here, pdf) and I’m fairly sure it was this family who were interviewed by BBC File on Four in this excellent program on the issue.  According to the program, the doctors stated: ‘If you’re not going to do it, I am, and I don’t need your permission’, and withdrew nutrition (but not hydration) the next day.  The man did not go ‘into a peaceful demise’:

‘...it was more a more of a, ooh, wake up and fight mode.  My son was doing the opposite, instead of sort of going slowly to sleep, he was coming awake.’

In fact, the diagnosis of PVS was incorrect, and according to the program the man was in a minimally conscious state.  A court ordered that nutrition be resumed, and he made a partial recovery; the family report:

‘...he’s laughing, he’s chuckling, he’s joining groups, he’s interacting and he’s doing very very well. Slowly but surely. He can recognise. All I’ve got to do is knock on his door and he turns round and he looks for me and gives me the biggest smile.’

Doctors interviewed on the BBC program indicate that it is not unheard of for PVS to be wrongly diagnosed.  Perhaps for this very reason it is important that decisions to withdraw ANH from the people in PVS must have the safeguard of a court hearing, where evidence about their levels of awareness and prospects of recovery can be tested.  The decision to withdrawn ANH must be made in the person’s ‘best interests’, according to the procedure set out in s4 Mental Capacity Act.  I will discuss the content of best interests decisions relating to life-sustaining treatment below.

End of life decisions elsewhere in Europe

From what I can gather, England and Wales may be relatively unique in having the safeguard of the court in end of life decisions [1].  I did a little research on this yesterday, and found that in France decisions to withdraw ANH are left to physicians alone; the family have a right to be informed.  In the very interesting paper I read on France, it seems that no legal distinction is made between PVS and minimally conscious states, and ANH may be withdrawn from people in either state.  Following a case where the feeding tube was withdrawn from a young man in PVS and he died after ‘experiencing multiple seizures that caused severe distress to the family’, French law requires the use of palliative sedation to alleviate any possible suffering to the patient.  Palliative sedation (also known as ‘terminal sedation’) also seems to be commonly used in Belgium and the Netherlands – both of which have laws permitting the use of active euthanasia.  It may well be that palliative sedation is used in England and Wales where ANH is withdrawn, but I couldn’t find much information on it.  It seems likely to me, that if the Court of Protection does allow M’s family’s request this week, palliative sedation will be considered in order to prevent any possible suffering.  The danger of using palliative sedation without first testing evidence on levels of awareness or prospects of recovery, may be that it masks residual function.

Like France and Scotland, neither Belgium nor the Netherlands seem to require any judicial oversight of withdrawal of treatment decisions, even where a person lacks capacity.  The UN Human Rights Committee has expressed concern about the use of active euthanasia without judicial oversight, as have others (see here, and here), but discussion of the issues surrounding “passive euthanasia” seem to fall rather in the shadow of these heated debates.  However, passive euthanasia is a serious issue in both countries.  Research using death certificates in Flanders suggests that in 2007 17.4% of all deaths resulted from withdrawal of treatment, and 14.5% of deaths were accompanied by continuous, deep, sedation; only some of these will have been competent patients.  In the Netherlands, withdrawing nutrition and hydration to allow death is known as versterving (roughly: mortification).  The practice is highly controversial; whilst advocates argue it can be a peaceful and ‘natural’ way to die if properly managed, and permits people some time to change their mind, there are very real concerns at the scale of its use – particularly among non-competent patients.  It is difficult to gather data on how widespread the practice of versterving is, but one paper suggested that it accounted for 23% of all deaths in nursing homes.  The majority of these deaths will not be patients in PVS or even minimally conscious states; many of these individuals had dementia.  I don’t think I will be alone in feeling extremely uncomfortable at learning this.  It raises very serious questions around whether the patients were competent, whether their views – or their families views – were sought, and upon what basis it was determined nutrition and hydration should be withdrawn.  As a form of ‘passive euthanasia’ there appears to be no real regulation of versterving, but in the Netherlands there are concerns that even active euthanasia is underreported and often in breach of procedural (if not substantive) legal guidelines.

The autonomy to prolong life?

The picture in other European states raise many very important, and emotive, issues.  Most clearly, they suggest there are powerful cultural differences in how we think about end of life decisions, and how we value certain forms of life.  There will be concerns about wrong diagnoses; withdrawal of treatment where people could perhaps have made some form of recovery.  There may also be grounds for concern about the potential for medical decision makers to override the requests of families and the individuals themselves to prolong treatment.  This is the inverse fear, if you like, to that of Diane Pretty and Debbie Purdy; yet still a concern centred on autonomy and our desire to control how and when we die.  This risk is particularly potent in the case of withdrawal of treatment, where even in the UK there is no straightforward ‘right’ to continue ANH, just as there is no absolute right to any form of medical treatment.  In 2005 a man suffering from a degenerative brain disease, Leslie Burke, applied to the court for a declaration that guidance issued by the General Medical Council could potential result in ANH being withdrawn from him at a later stage in his disease against his present – or future – wishes (Burke v GMC, 2005).  The guidance stated:

‘If you are the consultant or general practitioner in charge of a patient's care, it is your responsibility to make the decision about whether to withhold or withdraw a life-prolonging treatment, taking account of the views of the patient or those close to the patient’

In the High Court Munby J declared the guidance unlawful, and further declared that:

‘where a competent patient requests or where an incompetent patient has, prior to becoming incompetent, made it clear that they would wish to receive artificial nutrition and hydration, the withholding or withdrawal of artificial nutrition and hydration, leading to death by starvation or thirst would be a breach of their rights under Articles 2, 3 or 8 and would be unlawful under domestic law’

The Court of Appeal slapped down Munby J’s attempts to create a hard right to ANH, saying his declarations ‘were extraordinary in nature in that they did not purport to resolve any issues between the parties, but appeared to be intended to lay down propositions of law binding on the world.’  The court felt that the common law duty of care already adequately guarded against Mr Burke’s fears, and the Official Solicitor intervened to assure Mr Burke that should such a situation arise where he was no longer capable of taking legal action he would act on his behalf and in his best interests.  As, indeed, he has in the case of M.  Consequently, safeguards against withdrawal of ANH are only contained within the ‘dubious’ requirement that the authorisation of the Court of Protection is sought first, and the ‘best interests’ test contained within the MCA – which I shall presently discuss.

Eugenics or ‘best interests’?

Hovering in the background of concerns around euthanasia and treatment withdrawal, of course, are fears of permitting ‘eugenics’ by the back door.  Of withdrawing treatment from lives considered ‘unworthy of life’, echoing the Nazi ‘euthanasia’ program Aktion T4.  The key distinction between the current state of English law, and eugenics, is the motivation of those who seek to end life.  Eugenics programs seek to end lives in order to shape the kind of society we belong to, whereas what we might call ‘true euthanasia’ seeks to end lives out of respect and compassion for the suffering, dignity and autonomy of the individual concerned.  It can be very hard, at times, to separate out these discourses, especially where people lack mental capacity.

The Nazi eugenics program talked about ‘ballast existenz’, lives that weigh down society; yet even within our own society today we have discourses against dependence, against ‘being a burden’.  Baroness Warnock caused outrage a few years ago when she suggested that elderly people with mental decline would be acting in society’s best interests if they opted for euthanasia.  M herself apparently expressed a view that she would not want a life dependent on others.  For the court, the paramount issue will be it is M’s desire to avoid a life of dependency, not society’s or her family’s desire.  We might disagree with M’s previously expressed views on dependence, but the court will hear arguments that her autonomy should be respected nonetheless.  Unlike the Nazi eugenics program, the Court of Protection will pay close attention to any residual signs of autonomy M can currently display to indicate a preference, and listen out for echoes from her past expressed views for what she would have wanted for herself in such circumstances.  The danger, of course, with basing decisions on past views is that sometimes our views change.  Last year the BBC showed a fantastic documentary about life and death decisions in Addenbrooke’s Hospital brain injury unit (there does seem to be a copy on Youtube...)  In the film, Richard Rudd – who had always said that he would not want to carry on living with severe brain damage – indicated (through blinking) that he wanted to be kept alive.  Our perceptions of the quality of a life may change dramatically once we are inside it.  The greatest difficulty comes, in cases such as M’s, where people may be unable to communicate their feelings.

In a gross parody of compassion, the Nazi’s also used the dire state of institutional care to advance a view that severely disabled people were destined to suffer and would be better off dead.  It is important – but sometimes difficult – to separate out the contingent suffering caused by social context, from the suffering that is unavoidable; the eugenic trick was to cloud the issue.  The Court of Protection must weigh, very carefully, all options that could alleviate any suffering in life.  Another advantage to a judicial safeguards is the ability to hear conflicting medical expertise on how suffering could be alleviated, on possibilities for recovery, that could well go unheeded if decisions are left to treating physicians alone.  A fear that was raised right at the end of the File on Four program was that care for people in PVS or minimally conscious states can be extremely costly, and that might provide an incentive for medical professionals to withdraw treatment.  The court cannot, and would not, entertain such arguments in favour of withdrawing treatment.  The cost-utility analyses for the distribution of resources for healthcare treatments, QUALY’s, will not feature in the best interests determination being made by the Court of Protection.

The fundamental issue: Recognition

It seems highly improbable that if there were any signs that a person had a current preference to continue with ANH, that the Court of Protection would override that in favour of treatment withdrawal (or indeed, that hospital staff would ever bring such a case to court).  Cases like that of Bland and M arrive before the court precisely because such a preference is non-discernible.  Section 4 MCA sets out guidance on how to determine a person’s best interests where they are considered to be unable to make a choice.  Under the MCA proxy decision makers (in this case the Court of Protection itself), must not make their decision about what is in the person’s best interests on the basis of unjustified assumptions relating to their age, appearance, condition or behaviour.  So, in this case, the fact of M being in a minimally conscious state (or another patient being in PVS), is not in itself a reason to withdraw treatment.  The court will have to consider whether M’s capacity to make decisions about treatment for herself is likely to return in the future, even if only temporarily.  If it is, the decision will almost certainly be deferred until then; but it seems unlikely to me the case would have reached this point if that were a possibility.  Decisions around life sustaining treatment must not ‘be motivated by a desire to bring about [M’s] death’.  The court must consider:

• M's past and present wishes and feelings (and, in particular, any relevant written statement made by her when she had capacity),
• The beliefs and values that would be likely to influence M’s decision if she had capacity, and
• The other factors that she would be likely to consider if she were able to do so. 

They must also consult anyone engaged in caring for M (which will include her medical team, but also her family), anyone named by M, and anyone named in an LPA or appointed as a deputy by the court.

The ‘best interests’ criteria set out in s4 MCA are procedural, rather than substantive, and this is very much in keeping with the overall tone of the Act itself which does not seek to prescribe a particular view of the ‘good life’ (or even the ‘good death’).  The Act is intended to be flexible, and take into account that we live in a diverse culture that can tolerate and respect many different values and preferences.  Ultimately, the Act seeks to be both an instrument of autonomy and benevolence; of liberal values and paternalism.  But in these kinds of cases that is extremely problematic.  Where M cannot express a view, the only ‘autonomy’ the court can respect is the autonomy of her prior self, refracted through family reports.  The ‘benevolence’ of the Act is usually oriented towards avoiding suffering and maximising the ‘good life’, but where we are unsure of the content of a person’s experiences, how can we know if by withdrawing treatment we are ending a life of suffering or not?

This problem is an extreme version of one of the fundamental issues at the heart of the MCA: that of recognising the wishes and preferences, and ‘best interests’ of another person.  That of recognising who another person is.  Even when a person has recognisable expressive abilities, we are not always especially good at knowing what another person would want, or what would make them happy.  Think of all the diabolical gifts you might have received where you have wondered how little a person could know you to give you that sparkly rainbow sweater; or meals cooked for you that you have politely eaten but not enjoyed.  Now imagine those individuals dressing you each day, or choosing your meals.  In some matters, the people closest to us may be the least able to understand our desires in certain respects. These issues are not merely pertinent to our happiness, but also our sense of an authentic identity.  Through the choices we make, we construct who we are and what our life is 'about'.  Even if another person makes the self-same choice on our behalf that we would have made, there is a disconnect between the act and the expression (or creation) of identity.  For some, this will be experienced as deeply distressing; others may invest less in being able to make such choices in the first place.

I recently read a paper (pdf) by Slavoj Žižek, that I found particularly helpful in exploring these issues.  Žižek reminds us that the desire to die, is rarely the desire to die as such – but rather it is the desire to author our own ends by the means of our choosing:

There is a nice scene in a Hollywood horror movie of a desperate young woman who, alone in her bedroom, tries to kill herself; at that very point, the horrible creature attacking the city breaks into the room and attacks her – and the woman starts to protect herself desperately, since although she wanted her death, this was not the death she wanted...

On this understanding the circumstances and means of our death, or our prolonged life, are part of the way we want to construct our identities.  The difficulty in this case, is that M has suffered such a significant neural trauma that it is not clear that she is now straightforwardly the same person as the one who previously asserted that should would not want to live such a life.  Žižek describes patients like M as the victim who ‘survives its own death’; a new subject emerges and the previous identity is destroyed.  He describes how victims of severe neural trauma elude, in many ways, the traditional psycho-analytic architecture proposed by Freud, which sounds remote and academic until one grasps Žižek’s fundamental point: that we do not know how to model the wishes and desires of people in such a state.  In the paper, Žižek takes on a book (Les nouveaux blessés) by Catherine Malabou, whose work concerns neural plasticity.  Malabou asks what therapists can do for patients with such a high degree of trauma.  Malabou endorses a position that the therapist should ‘assemble’ the patients pain for them, on their behalf.  Žižek questions firstly how this would do any good for the patient, but also:

‘...even more radically, how can we be sure at all that is really the patient’s suffering we are assembling? What if it is the therapist who imagines how the patient must suffer, because he as it were automatically has to imagine how the patient’s deprivations must affect someone who still has, say, full memory and thus imagines what it would be to be deprived of it? What if the therapist thus misreads blessed ignorance as unbearable suffering?’

It is no use, on Žižek’s account, to appeal to the subject’s past self because this may be a situation where ‘when the patient’s old personality is destroyed, the very measure of suffering also disappears’.  That is to say, the part of ourselves that recoils in horror at the thought of life in a minimally conscious, or demented state, may itself be destroyed by the trauma.

The fundamental concern is that there will be cases where we simply do not know what people want, and all we are able to do is project upon them our own desires.

‘This subject is primordially an enigmatic impenetrable Thing [from Freud’s ‘das ding’], totally ambiguous, where one cannot but oscillate between attributing to it immense suffering and blessed ignorance. What characterizes it is the lack of recognition in the double sense of the term: we do not recognize ourselves in it, there is no empathy possible, AND the autistic subject[2], on account of its withdrawal, does not enact recognition.’

It is rare that a person, even with a severe consciousness disorder or advanced dementia, will show no signs at all that we might ‘recognise’ as indicating suffering or pleasure (‘she will broaden her facial expression – to me that’s a bit of a smile’), or even awareness of others.  But we remain unsure of how to interpret these signs in terms of their wider significance; how they feel about life itself, the meaning with which they imbue their experiences, what identity they are pursuing.  To use Žižek’s term, the ‘narrative symbolic texture’ of that person’s life has become so disrupted and distorted that we are unsure of how the person would choose to author their continued life, or death.  Sometimes - usually where people still have language - a glimmer remains, but it may lie far from the shared meaning frameworks we would ordinarily endorse as 'real'.  My grandfather was a physicist; when his Alzheimer's was advanced he confided in me that he had been placed in a grand physics experiment (in fact a dementia care home), where 'all the times I have ever lived through are happening at the same time'.  It was unhelped by his habit of stealing watches from other residents' rooms and wearing them all simultaneously ("do you know what time it is Grandpa?" "It's very hard to say").  He was convinced that escape from the experiment lay through the second floor window of his bedroom, which could open only an inch.  Was this a desire to die?  When he came to die, a horrible undignified death that I won't recount here, I doubt it was what he wanted.  The escape he wanted -from the experiment he lived within - was not available in any kind of reality.  The end M may have wanted for her life, to live without being a burden upon others, to exist with full mental capacity, to take her leave at a time of her choosing and by her own means, is not available to her either.  Whatever stories we tell ourselves about why people whose desires are beyond recognition should continue to live, or why they should die, they have become our stories, told to satisfy only ourselves, because they cannot reach the person who has ‘survived their own death’.  We become the unwilling author of their ends.

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[1] I think Germany may require court authorisation for withdrawal of treatment for incompetent patients

[2] By ‘autistic’ Žižek does not mean the conventional diagnosistic meaning.  I think he may mean a subject who is unable to engage, to a greater or lesser degree, in the ‘symbolic’; the system of shared meanings within a culture, mediated through language.  Unlike conventional diagnoses of autism, Žižek emphasises the status is as much an inability on our part to recognise the autistic subject, as for the autistic subject to recognise others.