Ethics: Can you help me get to Dignitas?
The dilemma You are working with a client, Marina, who has heard about Dignitas, the Swiss assisted dying organisation, via a BBC programme (The Report: tinyurl.com/cnr8exs). Marina is in her late 40s and has been diagnosed with early onset Alzheimer’s disease. She has a long-standing anxiety about travelling and would like help from you in managing this so that she can travel to Switzerland and end her life. Marina retains full capacity, and as far as you can tell is not suffering from any diagnosable mental illness apart from anxiety and moderate depression. She insists that you do not disclose any of this to her GP, family or other service workers.
Interest in ethical challenges has become rather fashionable in recent times. November saw live coverage of the Levenson Inquiry into the ethics of the press, and of the trial of Michael Jackson’s doctor Conrad Murray. BBC4 has run a series of programmes with Professor Michael Sandel on moral philosopy, and BBC radio shows such as The Moral Maze and Inside the Ethics Committee also draw good audiences.
For practising psychologists the change in the regulatory landscape, with the introduction of the Health Professions Council, developing effective skills in ethical reasoning and action has become increasingly necessary. As some people have found to their cost, speaking out about unethical practice can be a troubling experience (see www.medicalharm.org), but it is a professional responsibility which we cannot and should not duck.
This new occasional section of The Psychologist will present an ethical dilemma alongside invited commentaries. The aim is to provide some talking points about the issue, which are primarily informed by psychological research. Rather than simply referring readers to the Code of Ethics and Conduct, we hope the commentaries will pick up on the way psychology can help understand why such dilemmas are hard to deal with.
Our first dilemma is fictional, but drawn from a number of different clinical experiences. We hope that future dilemmas will represent and unite all corners of the discipline: do get in touch if you have an idea for a scenario. We welcome feedback on this idea as we look to develop it further, including making use of The Psychologist website to present and encourage a wider range of views.
Chair of the BPS Ethics Committee
Ethically and legally appropriate?
The dilemma in this case is whether it is ethically or legally appropriate for you to give this woman treatment that will facilitate her travelling to Dignitas to seek assisted suicide. Looking first at the legal position in the UK, committing suicide is no longer unlawful, but under the Suicide Act of 1961 encouraging or assisting suicide is a serious criminal offence, punishable by up to 14 years in prison.
In 2009 Debbie Purdy succeeded in her House of Lords appeal, forcing the Director of Public Prosecutions to clarify whether someone who assists suicide, for example, by accompanying a loved one to Switzerland, is committing an offence under UK law. The DPP’s guidance (see tinyurl.com/y7jvl3d) sets out factors for and against prosecution. Whereas the guidance provides some comfort for relatives supporting a loved one seeking assisted suicide, it specifically states a prosecution is more likely to be required if a person is acting in their capacity as a medical doctor or other health professional. Thus, providing the patient with this support in your professional capacity is highly risky. You might argue that you are merely treating the patient for anxiety regarding travel, which might be considered minimal in terms of assistance, but is this disingenuous, given that she has confided in you why she wants to overcome her fear of travelling.
An additional factor tending in favour of prosecution is where the patient lacks capacity under the Mental Capacity Act 2008. Although we are told that the patient retains capacity, the combination of early onset Alzheimer’s, together with her anxiety and depression, at the very least raises concerns as to her capacity, which might add to a decision to prosecute.
Ethically, your involvement in this case is likely to be influenced by your own personal views about the morality of assisted death. You may feel that assisted suicide is the ultimate beneficent act which respects a patient’s autonomy. Alternatively, you may feel that assisting suicide constitutes the ultimate harming of a patient. Most probably, you may have considerable sympathy for your patient’s plight, whilst rightly having professional and personal moral concerns about doing what she asks of you.
As a reflective practitioner, you will consider all the factors for and against complying with her request, in order to arrive at the most ethically acceptable course of action (which might, in the circumstances, be the ‘least worst’ option). You will also be mindful to take into account the BPS’s Code of Ethics (www.bps.org.uk/ethics). As a responsible clinician, you would doubtless want to benefit your patient, although this does not mean acceding to any and every patient request, particularly where the request clashes with your own values, or the request is to do something unlawful. You may wish to consider other ways that could benefit your patient in the difficult situation she finds herself in, for example by treating the depression (which may or may not be related to her diagnosis) or by signposting her to avenues of support.
There is an additional ethical concern around the patient’s insistence that you do not disclose her request to her GP, family or other service workers. Ordinarily, you should not breach the confidences of an apparently competent adult patient. However, given that her mental capacity is in question, and she is evincing a desire to self-harm, you may feel justified in seeking to persuade her to share her plans with others, or, ultimately, in breaching her confidentiality if you feel this to be required in her best interests. It would certainly be harder to respect her wish for you to keep this information from her GP and other health professionals if you were providing therapy in primary care and working as part of a multidisciplinary team.
Ultimately, you must take responsibility for weighing up these various factors to arrive at a justifiable course of action. But for the reasons I have set out, acceding to this patient’s request would expose you professionally and legally, and you would be well advised to seek advice from your professional body and professional indemnity insurers and to look for other ways to benefit this patient.
Peninsula Medical School
A bit of a tightrope
As in any situation, the key here is to begin with developing a good therapeutic rapport and establishing a good assessment. An initial session might talk about the role of a psychologist and when one does or doesn’t reveal information to others, and, in setting the scene, to talk about the unhelpfulness of having secrets. As part of the discussion one would have to highlight the role of both clinical and managerial supervision and one’s responsibilities both to the client, oneself, the profession and the organisation for which one works. A clear message at this point would need to be that the legal position is clear – as a psychologist one is not allowed to aid and abet (assisted) suicide. To my mind however, that does not exclude taking time with someone to help them work through the information they might need to make a clear decision about their future – however unwise.
I would want to gather enough information about the person, her childhood and upbringing, her health beliefs and her beliefs about mortality, spirituality, self-efficacy and agency. It would also be useful to explore family belief re illness, mental illness and mortality. The referral does not say whether this person is working, financially stable or whether she has a partner and children to relate to.
More detailed information about who had provided the Alzheimer’s disease diagnosis, where and how would be helpful to explore with her. It would also be helpful to explore the onset and duration of the anxiety and depression and what had been tried to this point. Further information would be required about the history of the travel phobia.The initial ethical questions for me would be around:
I whether you would get yourself into
a therapeutic bind by agreeing to keep a secret;
I whether you would encourage by thought, word or deed someone to actively take their own life when there might be other possible outcomes;
I whether you would be able to stand aside from your own wishes and spiritual beliefs about your own end
of life; and
I whether age was an issue here.
Helpful literature might include that on attachment, loss and bereavement, oncology, dementia and palliative care models in both. It would also be helpful to stand back and think about social construct theory and social learning theory.
If one was able to ‘hold’ the client to come back for further sessions, I would want to explore their thoughts and feelings about the Dignitas programme and why it felt the right thing for them at that point. I might point out that Dignitas says that many people say they would like to use them and some visit initially for the assessment but a relatively small proportion carry things through to assisted death. I would want to explore where they were in the ‘adjustment to diagnosis’ position and ask whether they had made a will, had enacted power of attorney, had an advanced directive – and what that would contain. That might enable a discussion about their fears and anxieties over having a progressive illness and death. Some factual information about the course of the disease and possible causes of death (which might not be Alzheimer’s disease, as stroke, coronary heart disease and cancer are the three main causes of death).
I would take time to explain the steps involved in a psychological intervention for travel phobia and the collaboration and timescale required. By this point one might be in a position to make a tentative formulation.
In the meantime, both in and out of session there would be work to do on ‘holding’ one’s own anxiety and that of others, once one had shared information with the referrer, the team or one’s supervisor, to enable the creation of a safe therapy plan.
Continued work in session might use ‘empty chair’ techniques to work through potential conversations with GP, partner, parents, siblings, children, friends to clarify the decision in the client’s mind – and to take that further to discuss who else ideally might be involved in contributing to the decision – both in the session and outside of it.
In the interests of the therapeutic relationship it might be important to voice the fact that you and the client might be coming into sessions with differing aims. Her stated aim – to become confident enough to travel to Dignitas – might be different from her underlying aim. The rapport-building and information-gathering approach I have suggested might be a way as therapist one would try to establish and voice the underlying aim, whilst encouraging the client to have a more open debate with those around her about her stated aim.
In a similar clinical situation with an older adult client with a progressive neurological condition, her ‘secret’ was not in fact secret. Family and medical staff had sensed, inferred, or been told her wishes: the issue was to encourage her to voice and share them, before developing a robust care plan to make her fears about the later stages of care explicit. From a clinical point of view, as a relatively experienced practitioner, I felt able to ‘hold’ the issues (with multi-disciplinary team, GP and supervisor support) in a way a more junior colleague might not. The GP initially consulted their professional body but then helped to discuss advanced directives and was very supportive of the client’s needs. It was, however, a bit of a tightrope.In addressing this dilemma, you may find it helpful to draw on James Rest’s 1982 four-component model (see tinyurl.com/chmshgx), which refers to ethical sensitivity, ethical reasoning, ethical motivation and ethical implementation. The ethical sensitivity here is not to shrink from facing difficult issues with the client and helping them explore them fully. The ethical reasoning is to maintain detachment from one’s own thoughts and beliefs about ‘right and wrong’, or one’s own preferences in a non-judgemental way whilst the possibilities are explored in a safe environment. The ethical motivation is to enable someone to make a good death in a planned, reasoned way, not based on fear of the unknown. The ethical implementation may be to work within the law and one’s professional code of practice, but to create a space to rehearse the arguments, look at the implications for the client and their significant others, before finally deciding whether in fact the referral was about travel phobia at all.
Chartered Psychologist and
Chair of Psychology Specialists
Working with Older People
Values and beliefs
The first issue here is simply a moral one about the way in which you view life and who that life belongs to. For some members of some religions life is actually God’s, and so interfering with that is wrong. Some psychologists may therefore have to say as matter of personal conscience that they cannot assist the individual to commit suicide, no matter how removed or how medicalised. One would hope that the BPS and HPC would understand that position (provided onward referral and continuity of care, and so on, were addressed). Conversely one might argue that psychologists should be non-judgemental and so work with people whose views they disagree with, or even find personally abhorrent, in the ‘cab rank’ principle that lawyers mention. Against that, one might argue that as it is the person of the psychologist that makes the intervention effective (e.g. therapeutic alliance) a less than fully committed psychologist would not be effective. But that is another debate.
The next – and seemingly less complex – issue is that of competence. Is the psychologist competent to undertake the work? If this person does have agoraphobia does the psychologist know what to do? Do you have a duty to work with your client to examine all angles and establish whether they have thought through all possibilities and consequences, or by doing this are you putting obstacles in their way, not respecting their wishes, and delaying their planned death to a point (potentially) where they are no longer judged competent?
What is the relationship between your implicit values and your overt behaviour? Your primary duty is to the person sitting in front of you and to their view of their world. Presumably you would wish them to have a happier, more fulfilled or more effective life. But you also have duties to range of other entities; for example to society as a whole and to your profession. Would you be acting in such a way to bring the profession into disrepute? Would you be acting beyond the ‘community sanction’ that society grants psychologists to allow their profession to practise within a particular domain? Might this action call into question the role of psychologists? And, further, on the societal level is what you are doing actually illegal? Are you prepared to face complaints to the BPS and HPC, with all that they entail? Are you prepared to go on trial and perhaps be gaoled because of your involvement? In comparison with a death these may seem slight matters but they are important.
On the other hand, you may feel that the person’s life is their own to do with as they wish. They are not harming anyone (physically) by their action, and you as a psychologist may be in a position to help them make peace with loved ones before their death to start to address psychological issues. You may argue that the culmination of a good life is a good death, and that if someone dying of cancer decided to refuse treatment and accepted only pain relief then that might be a ‘good’ outcome for them, and that this is an analogous case (with some differences in agency). Against that you might consider that agency is actually crucial here – by acting you are making an implicit judgement about the world, and the world changes as a result of your action. By what right do you change the world?
In this case, codes of ethics and conduct can only help so far. It is a matter of professional and personal judgement, of considering whether this would be a good act and whether you could do it. It would involve looking at all the angles, of discussion and coming to a decision. It would crucially depend on your values and beliefs and the relationship with your client. It will be difficult. As the BPS code states, ‘thinking is not optional’.
Senior Lecturer in Organizational
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