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Turning our backs on the dying?

 

n the news article ‘We should bring death back to life, into the open’ (September 2014), your journalist claimed they were unable to find psychologists who support assisted dying, hypothesising that ‘[p]erhaps there is a desire in the community to address and resolve issues rather than using this quicker means to an end’.

We write as psychologists who do support the right for terminally ill, mentally competent adults to have the choice of an assisted death. We do so precisely because we want to address and resolve the issues that are currently faced by dying people, rather than turn our backs on their suffering.

In the article Professor Owen Hughes asserts that he ‘certainly wouldn’t support assisted dying for people who have pain’. This is an uncompassionate response to the significant minority of dying people whose symptoms cannot be relieved by palliative care. The wishes of such people should be heard and respected within a legal framework. Secondly, suffering at the end of life is a much broader concept than simply pain, and only the dying patient has the right to determine how much suffering they can endure.

Dr Brett Smith is wrong to equate assisted dying and disability. Lord Falconer’s bill makes no reference to disabled people or to the quality of a person’s life. The bill addresses a fundamental issue with the quality of a person’s death. To that end it is strictly limited to terminally ill, mentally competent adults. Furthermore, and in contrast to Dr Smith’s claims, the voices of ‘“ordinary” disabled people’ are present in this debate – according to a 2013 YouGov survey, 79 per cent of people with disabilities support assisted dying.

Professor Scott Murray wants people to be able to discuss their end-of-life concerns. An assisted dying law would encourage this much more than the current law does by providing terminally ill patients with transparent choices. Patients would no longer fear criminally implicating their care professionals by raising their concerns, and this would lead to clarity on what treatments are available to them. In Oregon (where assisted dying is legal, under strict safeguards) only 1 in 10 who discuss assisted dying with their doctor go on to have an assisted death.

Currently, around 300 terminally ill people take their own lives every year in England and every two weeks somebody from the UK travels to the Dignitas clinic in Switzerland to die. These problems will not go away until the law on assisted dying changes. Parliament must act on this issue, as the Supreme Court has recently acknowledged. Healthcare professionals should contribute constructively to the debate. Outright opposition, as expressed by the professionals your journalist consulted, is comparable to turning our backs on the suffering of dying people. Under The Assisted Dying Bill, those healthcare professionals who object in principle to assisting a terminally ill patient to die would be protected by a conscientious objection clause. They should not stand in the way of those healthcare professionals who are willing to respect their patient’s informed choices.

Dr John Marzillier
Clinical Psychologist, Oxford
Professor Elizabeth Peel
University of Worcester
Professor Sue Wilkinson
Loughborough University

Editor’s note: I would like to take the opportunity to apologise for the editorial slip in the penultimate paragraph, which questioned why we were unable to find psychologists ‘to speak against the bill’: this clearly should have read ‘in favour of the bill’. Also, I should reiterate – as implied in that penultimate paragraph – that we were aware that the piece was unlikely to be representative of the voice of our membership, but that we decided to include it as a prompt for discussion and debate. I am glad to see it has served that function.
Finally, it might have been useful for us to refer to ongoing work within the Society on the issue, notably the End of Life Care Working Party, chaired by Dr Elaine McWilliams. 


I write as a retired GP and a supporter of assisted dying. I have read the Hansard account of the House of Lords debate and while the majority of contributions were helpful, a number of speeches from the noble and learned Lords did not address the provisions of the Bill. Professor Hughes and Dr Smith do the same.

There is no proposal to offer assisted dying to anyone who has chronic pain or disability unless he or she has a terminal illness. In addition, the patient must be of sound mind and settled intention. The four stages that Professor Murray finds that psychological distress occurs can presumably be identified and ameliorated by treatment.

In Oregon, where assisted dying has been available for 16 or 17 years, people described as vulnerable, those with disability, chronic illness, psychological illness and low socio-economic status, are underrepresented in the people who have assistance to die.
Iain C. Kerr
Glasgow 


One reason for supporting the Assisted Dying Bill is that the alternative to a relatively quick and painless ‘assisted death’ is not eternal life – certainly not for those terminally ill people who fall under the remit of the proposed legislation. Instead it is what the person themselves (and those who love them) may experience as a protracted, distressing, and undignified dying process.

Advances in medical technologies have increased our lifespan but sometimes with what people consider a severely reduced quality of life (Sears & Stanton, 2001). A life with little or no consciousness (maintained by ventilators or feeding tubes) is commonly viewed as a life not worth living (Demertzi et al., 2011).

In response, many countries, including England and Wales, have given statutory force to ‘Advance Decisions’ which allow people to specify, while they still have the capacity to do so, which treatments they want to refuse in the event that they lose the mental capacity to make the relevant decisions at the time. It is perfectly legal to refuse any and all life-prolonging treatments as long as you have mental capacity to do so – and this is legally defined as the ability to understand the decision you are making, to remember and weigh up the relevant information, and to communicate your decision (Mental Capacity Act 2005).

According to the UK charity Compassion in Dying (www.compassionindying.org.uk), only around 4 per cent of people in England and Wales have completed Advance Decisions – in part because of a persistent myth that ‘next of kin’ are able to make medical decisions on behalf of loved ones (Kitzinger, 2014).

Advance Decisions (along with other well-established principles requiring the withholding of ‘futile’ or ‘burdensome’ treatment) mean that it is lawful – and indeed, can be required by law – for doctors to withhold or withdraw life-prolonging treatments even if this results in your death (so-called ‘passive euthanasia’). However, it is not lawful for doctors to give you medication with the intention of causing your death (so-called ‘active euthanasia’ or ‘assisted dying’). This is what the proposed legislation in England and Wales seeks to change – but only for a very limited category of patients who meet three strict criteria: they must have mental capacity, no more than six months left to live and be able to self-administer the medicine.

My own research is with families of patients who will not be helped by the proposed legislation – people in long-term coma-like conditions. Following the court decision in the case of Tony Bland, the young man left in a vegetative state after the Hillsborough disaster, it is lawful to withdraw treatments from patients in a ‘permanent vegetative state’ (PVS), including (if authorised by the Court of Protection) withdrawing a feeding tube.

A recent court case (United Lincolnshire Hospitals NHS Trust v. N) also set a precedent for withdrawal of a feeding tube from a patient in a ‘minimally conscious state’ (MCS). Once a feeding tube is withdrawn from a patient who cannot otherwise obtain food or hydration, death is inevitable and organ failure will result within two weeks. Many families of PVS and MCS patients contemplating this process consider it barbaric (‘You wouldn’t do it to a dog’), and there is a widespread perception that lethal injections would be more humane, compassionate and dignified than ‘death by neglect’. Many of the 65 family members interviewed had considered ‘mercy killing’ – using a quicker method that (they believe) would result in less suffering for the patient, and for other family members (sometimes including children) witnessing the death (Kitzinger & Kitzinger, 2014).

These patients (and their families) are not helped by the bill’s proposals. Since patients in PVS and MCS can now be maintained for many years or even decades they are not ‘reasonably expected to die within six months’, and as they are severely brain damaged and not fully conscious, they do not have ‘the capacity to make the decision to end their own life’. For these profoundly disabled patients, the alternative to assisted dying is death from untreated infections and diseases (several interviewees’ relatives eventually died of pneumonia; one died of untreated gangrene) or death following court-authorised withdrawal of a feeding tube (see ‘Family experiences of vegetative and minimally conscious at healthtalk.org).

Likewise, the bill does not help profoundly disabled people like Tony Nicklinson, paralysed from the neck down after a stroke (see tinyurl.com/cttg9zo). He wanted the ‘right to die’, yet was physically unable to take his own life. He would have needed to be killed by someone else, which under current law would constitute murder. Since Nicklinson did not have a terminal illness and also was unable ‘to self-administer the medicine’ he, and people like him, are excluded from the provisions of the bill.

In sum, the bill opens up the possibility of an assisted death to only a very restricted group of people. It leaves those who do not qualify for assistance and fear an ‘undignified’ or protracted death with the alternatives of death resulting from withholding or withdrawing treatment or alternatively –as ‘Dignity in Dying’ (www.dignityindying.org.uk) campaigners point out – an early pre-emptive suicide while still having the mental capacity and physical ability to do it.

Professor Celia Kitzinger CPsychol, FBPsS
University of York

References
Demertzi, A. et al. (2011). Attitudes towards end-of-life issues in disorders of consciousness: A European Survey. Journal of Neurology, 258, 1058–1065.
Kitzinger, C. (2014). Advance Decisions: Do they work in practice? Elder Law Journal, 4(2), 123–238.
Kitzinger, C. & Kitzinger, J. (2014). Withdrawing artificial nutrition and hydration from minimally conscious and vegetative patients: Family perspectives. Journal of Medical Ethics [Advance online publication]. doi:10.1136/medethics-2013-101799
Sears, S.R. & Stanton, A.L. (2001). Physician-assisted dying: Review of issues and roles for health psychologists. Health Psychology, 20, 302–310.


t was with great interest that I read the article on the Assisted Dying Bill in the September issue of The Psychologist. I took an active part in contributing to the role of psychologists in assisted dying (AD) during my career in the NHS, having acted as an expert witness to the original proposal by Lord Joffe in 2004, and offered a response to legislators in the subsequent years. I also chaired the BPS working party on the role of psychologists in end-of-life care , which produced a report (BPS, 2008) that is currently being updated, and acted as an expert witness to the Demos Commission on Assisted Dying when the current iteration of the Assisted Dying Bill was being reconsidered.

I find the article in The Psychologist deeply disappointing from a number of perspectives. Firstly, and most importantly, while it informs the reader that the current bill refers to making AD available only to those people with a terminal illness and in the last six months of their lives, it fails to mention that there would be a rigorous assessment process, which involves considerable investment of time, knowledge and skill on the part of the healthcare (and potentially other) professionals involved. It is an entirely voluntary process, and the safeguards to ensure the person requesting assisted dying has full mental capacity are robust.

I would urge anyone who has a serious interest in the bill to read it. The bill most closely follows the Oregon Death With Dignity Act (DWDA), and thus readers might also look at the research from the US, predominantly Oregon, which legislated for the DWDA in 1997, and who have been collecting robust data since that time (see tinyurl.com/nfq8uqa).

There is also a body of independent research looking at factors such as doctors’ attitudes to AD, the nature of the people who request a lethal prescription, and the effects on the palliative care services (Battin et al., 2007). It is also helpful to look at the websites of Dignity in Dying (www.dignityindying.org.uk) and Care not Killing (www.carenotkilling.org.uk), which offer two very different perspectives on the potential impact of the bill.

A further disappointment is the inclusion of two clinicians who are not involved in services for people with a life-limiting illness. The bill is very clear that it refers only to people with a life-limiting illness, therefore people with chronic pain, or a specific disability would, by definition, be disbarred from requesting AD. The final contributor, who works in primary palliative care cites his own work, which while offering interesting data, provides neither new information (we have known about the critical stages in the experience of having cancer since the work of Jimmie Holland in the early 1970s: see Holland et al., 2010), nor is it relevant to the issue of AD, because, as stated above, a request for AD can only be made in the last six months of life (so far as it is possible to prognosticate), thus other critical periods for significant psychological distress can, and should be managed by other means, whether through medication and/or psychological therapies (Brennan, 2004; Sage et al., 2010).

There is a strong implication in the article that pressure groups for people with disabilities are anxious that a change in the law would put individuals with disabilities under implicit pressure to volunteer themselves for AD, were the bill to become law –the ‘slippery slope’ argument. While not wanting to dismiss the anxieties of such groups, it is not possible for this to happen within the remit of the bill. It is very specific, and as stated above, most closely matches the DWDA, and not that of the models that many of the Benelux countries have adopted, which often incorporate euthanasia, in which a person is helped to die through a physician administering a lethal drug, and AD, in which a physician prescribes lethal drugs, and the patient themselves taking them if /when they believe right time has come.

Evidence from Oregon suggests that while the numbers of people with life-limiting disease requesting a lethal prescription have risen steadily since 1997: a total of 1173 people have had assisted-dying prescriptions written and 752 patients have died from ingesting medications prescribed under the law, the proportion of people who take the drugs, as opposed to having them in a safe place at home, remains between 50 and 60 per cent year on year. This means that from 40 to 50 per cent do not take the lethal drugs, and die from other causes. However, they have the peace of mind of knowing the option is there for them if they need it (see tinyurl.com/nfq8uqa).

From a clinical perspective, having worked in specialist palliative care for 20 years, and having a consultancy in the field now, I found the patients who talked about wanting to commit suicide, or having help to die were many, and the number of people who took their own lives very low.

In summary, while it is laudable that The Psychologist has chosen to consider this issue, it is disappointing that the opportunity to engender well-informed and open debate seems to have been missed. Perhaps the BPS should consider developing a debate with interested parties, including representatives from faith groups, relevant pressure groups,
the Royal Colleges, etc., particularly given that the issue is ‘live’ at the moment, while the bill progresses through the parliamentary process.
Finally, and perhaps of most importance, we need to ensure that the profession is at the forefront of the important conversations that individuals and families want or need to have when faced with the deeply important issue of discussing how we die.

Christine Kalus
Consultant Clinical Psychologist in independent practice
Old Portsmouth
Hants

References
Battin, M., van der Heide, A., Ganzini, L. et al. (2007). Legal physician-assisted dying in Oregon and the Netherlands: Evidence concerning the impact on patients in ‘vulnerable’ groups. Journal of Medical Ethics. 33, 591–597.
Brennan, J. (2004). Cancer in context. Oxford: Oxford University Press.
British Psychological Society (2008). The role of psychologists in end of life care. Leicester: Author.
Holland, J., Breitbart, W., Jacobsen, P. et al. (Eds.) (2010). Psycho-oncology (2nd edn). New York: Oxford University Press.
Sage, N., Sowden, M., Chorlton, E. & Edeleanu, A. (2010). CBT for chronic illness and palliative care. Chichester: Wiley.


I support the Assisted Dying Bill, to give the terminally ill the right to choose to be assisted to die, which was the subject of the article ‘We should bring death back to life, into the open’ in the September issue of The Psychologist.

I fully support the aims put forward by the specialists in relation to their areas of expertise, but none of them makes any mention of an individual’s right to make their own assessment of whether or not their life is worth living.

Professor Hughes wants ‘greater availability of pain management’; Dr Smith wants better support and more suitable accommodation for disabled people and the promotion of a more positive view of the potential for a disabled person to have a good quality of life; Professor Murray wants better palliative care, particularly better psychological support for the terminally ill; all of these are important points which would undoubtedly make life better for many terminally ill people. But that is not the issue here. It is not for any specialist to judge whether the application of the best techniques available will make life worth living for a particular individual.

I believe the Assisted Dying Bill will enhance the wellbeing of all terminally ill people, by giving back to each individual some of the control that they have lost – the ability to choose to terminate their own life should they judge that it has become intolerable. (There are safeguards in the bill to prevent such decisions being implemented on a whim.)

This choice is particularly important for those suffering deteriorating health. Without that reassurance, some feel they must take their own life while they are still able to do so. They fear that if they live (happily) a few more months, even years, they could become unable to die without assistance should their life become intolerable. At that point they would be forced to suffer months of an intolerable life, or to ask a friend or relative to risk imprisonment by helping them to die. Neither is acceptable, so they must choose to end their life while they can do it alone. That is the only way they can retain control – and lack of control over one’s fate is psychologically debilitating.

The knowledge that there would be the choice to be helped to die if life were to become unbearable would give many the confidence to enjoy life despite their declining abilities.
Richard Mobbs
Kingston upon Thames


In the service where I work as a clinical psychologist, many of our clients are drawn from well-off, educated backgrounds, having had successful careers and often placing great value on cognitive ability and academic endeavour. Though not common, I have come across a number of clients who express a desire to end their lives following a diagnosis of dementia. I think particularly of one very intelligent man in his 80s who is extremely cognisant of the decline in his cognitive faculties, monitors these changes constantly, and is well informed about the prognosis for his cognitive future. Since his diagnosis he has expressed an unwavering wish to take his life. His family, realising that he is likely to do so in a less controlled way, have offered to take him to Dignitas in Switzerland. This is difficult and expensive for a family to undertake. However they are endeavouring to respect their father’s desire to hold his fate in his hands as they have always done. This while having to overcome their own conflicting feelings.

In my role I have supported this gentleman for eight months. We have considered the impact of euthanasia on his family, as well as exploring his feelings around the changes that he is experiencing (physical, emotional and cognitive). The gentleman does not appear depressed on either objective or subjective measures and any negative appraisals are directly related to his diagnosis of dementia. He has been assessed to have capacity. Therapy has been successful in challenging his belief that his cognitive decline will be rapid and sudden and that life with a diagnosis of Alzheimer’s disease is not worth living. He has agreed
to postpone his suicide, but is adamant that it is the way in which he wishes to end a very independent life. He is anxious that by postponing his suicide he will pass the point where he is able to commit it.

As you can imagine, this has been a challenging road for a new psychologist to tread. While ensuring that I am not perceived to support his desire to end his life, I need to respect my client’s wish to live (and yes, die) as he chooses. I have had to consider how to give him sufficient support so as to engender trust and prevent him from disengaging from therapy, while not actually encouraging his actions. I have explored this complex ethical dilemma within supervision and considered our profession’s responsibility with regard to safeguarding. Perhaps it is understandable therefore  that it has been difficult for psychologists to speak up in favour of the Assisted Dying Bill. As a profession, we are committed to prolonging life and well-being, but as therapists we are also acutely aware of the suffering that clients experience as a result of the difficult lives they lead. We might believe that the client is the expert on themselves, but in a case such as this, do we hesitate when giving their (legitimate) wishes credence? Our BPS Code of Ethics and Conduct highlights respect for clients’ self -determination. Would it be ethical to dismiss this man’s considered wishes for the end of his life or to give tacit (or even explicit) support to his plan to end it while he still can in a manner of his own choosing?
Name and address supplied


‘Creative’ (and non-creative?) industry

Creative Britain is certainly a phenomenon, if it exists, which we and our descendants will have to nurture if we want to thrive. But what is this; and as your correspondent David Wood writes in (Letters, September 2014), exactly where is it?

Stephanie Taylor (‘Creative Britain, August 2014) gives much useful information about what the Department for Culture Media and Sport designate as creative industries, comprising ‘advertising, architecture, the art and antiques market, crafts, design, designer fashion, film and video, interactive leisure software, music, the performing arts, publishing, software and computer services, television and radio’ which evidently contributed (in 2010) £59 billion to the national economy.

Before examining (social) psychological aspects of the above industries it would be useful to set the economic size of all this activity alongside that contributed by other industries. A Wikipedia article (citing the UK Office for National Statistics) reports that
in 2011 the construction industry contributed £87 billion to the UK economy, its largest component being the London Crossrail project; aerospace has an ‘annual turnover of £20 billion’ with British Aerospace the largest component, being the world’s second largest defence contractor.

By composing the list above the DCMS might imply that other industries are not so (or not at all?) creative. Some critics will judge by the utility of the output and would argue that the defence (armaments) manufacturers are not creative but destructive; I have read similar arguments about large sections of the drug industries. Leading from this it is also easy to find critics and analysts who argue that much of advertising and screen products (including video games) arbitrarily designated ‘creative’ by the DCMS is destructive.

Taylor turns to those who challenge a focus on individual creativity. An expert is cited who proposes that ‘creative behaviour is the outcome of favourable circumstances’ (and how might they arise?). Ah! Creative behaviour is what we (informed and influential people) say it is. ‘Social psychological studies [all of them?] challenge the conventional association of creativity with individual genius or special talents’ (Taylor, p.592); please count me out of this view. We need to notice how G.F. Handel powered his way, from a very early age, against his parents’ designs for him, to establish himself as performer and creator of music – and, then, agreeing with the ‘social’ gurus, to become a builder in an existing industry (opera) and the creator of a new one (oratorio). There is no doubt much to be said about social facilitation (or frustration) of individual attributes and their operation, but to rule them out of this particular discussion (and in general) is to make a hole in the most important unit in the ‘equation’.

I trace the problem back to the 1960s when educational psychologists teased out and labelled two constructs, of divergent and of convergent ability.  The first, by itself, (mistakenly) became identified with ‘creative’ thinking, and action and was fostered in school curricula. It also became associated with certain subjects and dissociated from others. A different view, that creative performance would most likely spring from a combination of three things – both high divergent and high convergent personal ability and of course encouraging contextual conditions – was not developed. It would be more creative of us now to return to a more rounded account.
J. Mallory Wober PhD
London NW3 


The end of prosopagnosia?

My eye was caught by two articles in the August issue. The first of these was Elliott and Grigorenko’s ‘The end of dyslexia?’. They noted that some children self-evidently find it more difficult than others to learn how to read and write, but that the concept of dyslexia had not really contributed much to our understanding of this, nor to our ability to intervene usefully. They also noted the way in which the term ‘dyslexia’ has come to be used for political and campaigning purposes, which has arguably confused an already confused situation further: ‘the label is a cultural meme that remains unscientific and conceptually problematic’.The second article (‘Getting engaged with the public’, Society) was partly about prosopagnosia – ‘face blindness’ – and it struck me that many of the points made in the dyslexia article might equally apply to the suggestions in the prosopagnosia piece. For example, it was claimed that 1 in 50 suffer from face blindness, without the term being adequately defined (i.e. are we talking about the ‘I don’t recognize my wife’ variety, or the ‘I’m not very good at remembering new faces’ variety?). There were also suggestions that a national charity should be established, that health and education professionals should be made more aware of the condition, and even that ‘a set of guidance notes’ should be developed.

I am reluctant to take all this at face value. Severe prosopagnosia is without doubt a difficult condition to live with, but I worry that – as with dyslexia – people may self-diagnose then seek a formal assessment (I’m freeing up my diary in anticipation) in order to get a formal diagnosis, which is unlikely to result in any useful intervention. Could it be that the ability to ‘learn’ and recognise a face, like many other cognitive abilities, is simply a skill which is more-or-less normally distributed in
the general population?
John Higgon
Clinical neuropsychologist
Dumfries


‘I’m no expert’, says female psychologist…

I love psychology. I have monopolised many a dinner party talking about it. By chance/serendipity/fate I met someone who was researching for a book that interweaves the story of James Sadler,
the first Brit to fly, with the author’s own journey to conquer their lifelong fear of heights. Crucially, he wanted to recreate Sadler’s hot-air balloon flight – horribly incompatible with his height phobia. A perfect excuse to chat about psychology for hours.

Long story short, the book has been published [see review on p.792]. I am so proud – like a kid with a show and tell – that some of my comments made it into the story. We’ve also done a couple of local radio appearances to promote the book and contribute to the public dialogue about mental health.

The very odd thing is that my appearance in the book and on the radio is consistently prefaced with the phrase ‘phobia expert’. I am at the start of my career as a psychologist, seemingly surrounded by people more experienced, skilled, and deserving of that status. It feels a very odd title for me. I was trained to consider power relations; the inherent inequality of the title ‘Dr’. In fact, I’d go so far as to say that if I were given feedback that ‘Hannah took the expert position’,

I would consider it rather an indictment. So at first, I was taken aback. Always the dutiful psychologist,  I consulted my supervisor, who suggested that I may never think of myself as an ‘expert’, but I know a lot more than the average person and therefore have a valuable contribution. A peer suggested that public engagement is one of the most useful things a psychologist can do – and in common parlance ‘expert’ is probably a reasonable title. A friend looked at me quizzically and said, ‘Hannah, you’ve been training for the best part of the last decade…?’

And then comes a seemingly unrelated inter

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