News

IME Annual Seminar Competition 2019/2020

IME Annual Seminar Competition 2019/2020

 

The Research Committee of the IME is inviting submissions for its annual seminar competition (2019/2020). The closing date for applications is Monday 2nd December at 5pm. Applicants will be notified of the outcome of their submission by Friday 31st January 2020. All funds must be spent by 30th December 2020.

 

What We Offer

We fund projects in the region of £2,500-£3,500, and we expect to make approximately 3-4 awards per year. All costs need to be carefully justified, so we encourage applicants to consider value for money when costing their proposal. Applications will not be considered where the amount of support required from the IME is less than £500, or where the event is targeted at staff or students from a single institution.

 

Eligibility

Applications will only be accepted from IME members, but no restrictions are placed on the professional background of this lead applicant (e.g. academia, research, clinical practice). Whilst early career researchers are encouraged to apply, applications led by, or aimed at postgraduate (including doctoral) students are not permitted via this scheme. Postgraduate students may be listed as co-applicants for this scheme, but are otherwise encouraged to contact the IME’s Postgraduate Committee for alternative funding opportunities.

 

What We Fund

The money can be used to support the delivery of an individual seminar, workshop or short conference, or to support a series of events. Provided that applicants can show relevance to the aims and objectives of the IME, there are no restrictions concerning the subject matter, although applicants should be able to demonstrate clear benefits of the proposed activity to the wider biomedical ethics community (for example through the identification of new areas for inter-disciplinary scholarship, developments in methodology or theory, or through broader research/scholarship capacity building activities). Innovation in activity content and design, as well as collaboration with clinical practitioners is encouraged. Participants must also be able to demonstrate wide-reaching dissemination plans for the outcomes of their event in order to maximise the impact and benefit for the biomedical ethics community. 

 

Please apply using this form ensuring that you take a note of the application rules.

If you have any queries, contact Phil Greenwood philg@instituteofmedicalethics.org



Alexa Warnes, a medical student at Brighton & Sussex Medical School received an IME Bursary for her elective in May 2019. Read the report of her project below

End of Life Choices – Reflections from a medical elective placement in Oregon, USA

As a trainee doctor, death and dying is something that I will inevitably be dealing with during my professional life. And caring for people who are dying can be one of the most dramatic things that doctors will come across. Yet, it still isn't something we are practiced in talking about. I wanted more experience in how to look after the dying person, and decided to organise my medical elective in end-of-life care. I chose Oregon, USA, as a destination because they have an interesting model of palliative care alongside Medical Aid in Dying (MAID). MAID came out of the Death with Dignity law – a law passed in Oregon over twenty years ago, which allows people at the end of life with a six-month prognosis (or less) to take a medication to assist in their death.

Prior to my arrival in Oregon, I was expecting that MAID - a legal choice at the end of life - would be brought up in consultation as readily as, for example, a new drug regimen for pain management, or an appropriate antiemetic to help with nausea. This is not to say that the discussion would be a simple one, but more that it would be easily accessible to the dying person as a part of a wider conversation about end-of-life choices. I soon realised I was naïve in this expectation, as the reality is actually that MAID was never something that would be 'offered' to the patient in consultation with a healthcare professional. It became clear, from what I saw and heard, that the few people who were eligible and then opted for MAID were all people who had very decidedly made this decision for themselves, independently of their doctor. MAID was never something I saw initiated by the doctor. And when I asked doctors about how the conversation with a patient came up, it was apparent – even by those advocating for MAID as a choice – that it would be inappropriate to initiate discussions for fear of it being interpreted as coercion.

Alongside thinking about the fear of being coercive, I also became interested in how a doctor's individual belief system may affect how a patient accesses MAID, as the moral application of MAID continues to cause divisions. I have always been very curious about the power of an individual's personal beliefs, and how these beliefs reveal themselves during professional life. Personal beliefs shape what we think to be right and wrong, and it does not strike me as surprising that when it comes to life and death, people feel very strongly about how these events should play out. In a similar vein to anti-abortion arguments, there are groups of people who believe in the preservation of life, and thus do not believe in MAID. Whilst this is not a piece of writing arguing the bioethics of whether MAID is morally right or wrong, it does invite a consideration of when personal beliefs may overtake, for example, a doctors professional integrity and duty to their patient.

I began thinking about this early in my trip after I met Dr Grey*, a family doctor with many years of experience working as an advocate for MAID. As a doctor, his thoughts were that there is a paramount duty to use professional integrity to guide clinical practice towards what best serves the beliefs and wishes of the patient. This is very different, he says, to using one's own personal belief system to guide what one might think as best for their patient. And Dr Grey explains that where some doctors may resist conversations about MAID because of personal beliefs, he sees it as his professional duty to talk to a patient openly and honestly about all the options of how to die. Thus, in order to do this, it may be appropriate for a doctor to be the first initiator of a conversation about MAID.

Dr Grey's approach stuck with me during my time in Oregon, and I slowly realised that he was in fact rather maverick in his outlook. As the first days of my clinical placement in the hospice went by, conversations between healthcare workers and their patients began gathering in my brain. I found myself often waiting for MAID to be offered to the dying patient, yet this offer was never made. Realising this, I stopped waiting, and instead focused on how different words were delivered about common themes of prognosis, the "dying" process, and then death itself. And I began to see that to be an advocate for MAID, this did not necessarily have to equate with the healthcare worker initiating the conversation with the patient. But it could do – and as Dr Grey explained, for him it was actually part of his professional duty. For most, however, supporting the option of MAID as an end-of-life choice meant responding to a patient's request and guiding them towards necessary next steps.

My reflections on MAID in Oregon have focused on this aspect of "how to have the conversation" because it seems to be one of the main areas that both doctors and patients have difficulty – and thus something that may come up here in the UK should we ever pass a similar law. There are of course many practical issues that go alongside bringing in new healthcare legislation such as ensuring appropriate safeguarding measures, organisation of policy frameworks, and medication issues. But as an ethical question, I did notice myself continually returning to how these initial conversations about MAID actually came about. I am not yet decided on what I consider to be the "best" approach – whether it is the duty of the doctor to initiate the discussion – or instead whether it should always come first from the patient. I see the logic of the latter, but I am compelled by Dr Grey's "professional integrity" and the duty he places on himself to discuss all end-of-life options (including MAID) with his patients. Perhaps there is no 'best' way at all, and as is often the case, it will depend on each individual patient. But it is an interesting thought, and one that will require a doctors scrutiny here in the UK, should they ever find themselves in these consultations in the future.

*Pseudonym



Craig Tilley, a medical student at Brighton & Sussex Medical School, received an IME Scholarship for his BSc Bioethics intercalated degree at University of Bristol, Sept 2017. The report of his project is below

Understanding Dignity: A Fundamental Concept in the Assisted Dying Debate

Background

Dignity is a concept that is intrinsically linked to the assisted dying debate, yet it is considered a murky notion that lacks the clarity to bring anything meaningful to bioethical discourse. This project had three parts. First, to provide an overview of end of life law in the UK. Second, to explore the variety philosophical concepts of dignity and settle on a definition. Third, to apply my defined concept of dignity to the end of life debate.

Part 1

I started my examination of the legal landscape in the United Kingdom (UK) at the end of life with a comparison between the cases of R v Cox[1]  and Airedale NHS Trust v Bland.[2] This provided the perfect springboard for the debate, as it highlights the critical difference between act and omission that UK law has long relied upon. The withdrawal of life sustaining treatments is seen as an omission at law. Therefore, it is not an act that hastens death and is not akin to euthanasia. These cases, in combination with the Suicide Act 1961 provide the basis for the UK's legal principles at the end of life. These are as follows: Assisted dying, be that active euthanasia or assisted suicide is illegal. Whereas passive euthanasia, such as the withdrawal of life sustaining treatments is legal.

With this foundation laid, I move on to discuss the cases that have challenged the UK's current stance. Starting with the cases of Pretty[3] and Purdy[4]. The former leading to the European Court of Human Rights recognising that the UK's current law breached Ms Pretty's right to self-determination under Article 8 of the Human Rights Act 1998. However, this right was sacrificed in order to protect the wider population. Ms Purdy's case lead to the publishing of a policy that brought clarity to prosecution of offenses under the law surrounding assisted suicide.

Finally, I explored the arguments in the case of Nicklinson.[5] Despite this case being unsuccessful, in their judgments the majority supreme court justices appeared to sympathise with the claim that existing law was incompatible with Article 8 of the Human Rights Act 1998. Further to which, it is argued that their statements suggest that Parliament must satisfactorily address this issue. Commentators, such as Hobson argued that in this context, these statements were tantamount to a change to law.[6] The Assisted Dying Bills that followed did not pass. Later, when Noel Conway challenged, many predicted that the declaration of incompatibly would arrive. Ultimately, this did not come to fruition.

Part 2

Macklin argues that without any meaningful definition it is a useless concept that can be removed from bioethical discourse without loss of content.[7] In order to salvage dignity I look to historical uses of the term, before looking to more recent discussion.

This began with an exploration of Immanuel Kant's use of dignity. Kant saw dignity as the intrinsic value that all human beings possess due to their capacity for autonomous action.[8] However, he failed to appreciate that not all human beings have a capacity for autonomous action, such as those in a coma, yet we still see them as having dignity that can be affronted. Therefore, I abandoned the Kantian approach for a modernistic account by Neal.[9]

Neal sees universal vulnerability as the organising idea of dignity. The value of dignity is its positive valuation of the things that make all humans vulnerable to harms. I failed to find flaw's in Neal's claims, but felt her account lacked the clarity to be a useful concept. I decided to combine her account, with its basis of vulnerability with Foster's Aristotelian account of dignity. Foster's account sees dignity as a way of "being", which I argue can be seen as "being vulnerable" as all humans are. This model for application of dignity uses a consequentialist transaction in which all stakeholders in a decision have their dignity accounted for.  Ultimately, the transaction aims to protect dignity by promoting the views of the most vulnerable and maximising the thriving of stakeholders as a whole.

Part 3

Next, I needed to perform an audit of the dignity interests of all stakeholders. I considered three stakeholders; the patient, 'at risk' groups and doctors.

In the case of the patient, whom I considered to be the most vulnerable group, I concluded that only in a very specific set of circumstances would an assisted death promote dignity. These are that the patient is in a state of such permanent ill-health that they lack the capacity to thrive and are only moving away from thriving and towards greater vulnerability. Only in these circumstances will assisted dying protect the dignity of patients.

Next, we consider 'at risk' groups such as the old, disabled and psychologically distressed. It can be argued that individuals belonging to these groups will be considered as lacking in the capacity to thrive at all times. I found this issue difficult to overcome and brought to light the need to individualise thriving which makes my model of dignity less useful as a general concept.

When considering the dignity of the doctor, I considered a thriving doctor to be one who practices within on the goals of medicine and professional integrity. Many argue that preservation of life is the most critical goal of medicine. However, in response I argue that once a patient is recognised as dying, this is no longer the critical goal and is replaced by a focus on comfort. Therefore, a doctor who aids a patient with a terminal illness and a voluntary request for an assisted death does not contradict the doctors thriving.

Conclusion

From my three sections I arrive at three conclusions. One, a hidden majority of supreme court justices see current law as incompatible with human rights. Two, the murky notion of dignity can find footing in intrinsic human vulnerability. Three, auditing the dignity of all stakeholders I arrive with a result in support of assisted dying for terminally ill individuals who lack the capacity to thrive.

[1] [1992] 12 BMLR 38.

[1] [1993] AC 789 (HL).

[1] R (Pretty) v Director of Public Prosecutions [2001] EWHC Admin 788.

[1] R (Purdy) v Director of Public Prosecutions [2008] EWHC 2565 (Admin), [2009] HRLR 7.

[1] R (Nicklinson) v Ministry of Justice; R (AM) v Director of Public Prosecutions [2014] UKSC 38, [2015] AC 657.

[1] Clark Hobson, 'Is it now institutionally appropriate for the courts to consider whether he assisted dying ban is human rights compatible? Conway v Secretary of state for Justice.' (2017) Medical Law Review accessed 8 April 2018.

[1] Ruth Macklin, 'Dignity is a useless concept.' (2003) 327 British Medical Journal 1419.

[1] Immanuel Kant, Groundwork for the metaphysics of morals (JW Ellington trans, 2nd ed, Hackett, 1994) 40.

[1] Mary Neal '"Not gods but animals": Human dignity and vulnerable subjecthood' (2012) 33 Liverpool Law Rev 177.



Sara Khalid, a medical student at University of Exeter received an IME Scholarship for her intercalated BA in Medical Humanities with Ethics, Sept 2018. Read the report of her project below

'To treat or not to treat'- the modern's physician's dilemma in the discussion of paediatric end of life care

Background

Paediatric end of life care is becoming an increasingly prevalent conundrum for doctors. With an increase in premature neonatal survival, a new population is arising1. End of life care now includes babies who have beaten their statistical survival probability odds, bringing new ethical considerations. Highly publicised cases of Charlie Gard and Alfie Evans have caused public uproar, presidential involvement and professionals receiving death threats3-5. The courts often become involved, a traumatic experience for both doctors and parents. Could perhaps the answer in the best way to manage such cases lie in returning to ethical theory and principles? Furthermore, could revisiting ethical theory shed some light on the reason as to why the courts are often seen backing the doctors' decisions rather than the parents desires?

Due to word constraints, this summary only describes main discussions. Others investigations have not been covered but are mentioned in the conclusion.

Methodology

Information was obtained through literary searches and databases. Modules taken in Medical Ethics and Law and Disability in Society, provided skills and knowledge in interpreting, understanding and criticising end of life law and ethics.

Key ethical principles

It has been suggested that a thorough understanding of ethics will aid decision-making6. However, as ethical principles are explored, more clashes between them are found. Identifying clashes illustrates inconsistencies in end of life reasoning that is currently used as justification in paediatric end of life decision-making.

Autonomy

Autonomy is the foundation on which patient desired passive euthanasia (PPE) is built on, as seen in Re B7. However, autonomy is not respected in active euthanasia (AE) or assisted suicide (AS) as seen in the case of Tony Nicklinson8. Therefore, the discussion surrounding autonomy is complex and inconsistent enough without the consideration of paediatric patients who are unable to voice their autonomy, with Gillick's competence also being of no use in the neonate population.

To overcome this, English Law requires parents and clinicians to agree on a 'best interests' decision on behalf of the child with the courts making the decision if disagreement, as was seen with Alfie Evans, occurs. However, 'best interests' is vague and difficult to gauge and gives rise to a standoff between the parents' and doctor's autonomy. Patient autonomy is not absolute, with patients not able to demand treatment. AE and AS requires a substance to be administered whereas patient requested PE declines treatment and is therefore covered by autonomy. This concept could be extrapolated to parents, perhaps offering a solution to when disagreement occurs. Parents' autonomy by proxy can decline treatment but not demand it. However, this is also not clear-cut as doctors can also override parent's decisions in refusing treatment, if they believe it not to be in the child's best interests e.g. blood transfusions in Jehovah's Witnesses.

Sanctity of life

Sanctity of life is often cited why AS and AE cannot be legalised. However, this argument is often criticised, due to its religious origins having no place in secular state9, but also as it is of no concern when treatment is withdrawn.

Dworkin argues sanctity of life coexists with quality of life. If a person has a poor quality of life, its value diminishes and therefore no longer protected by the principle9. However, Dworkin's reasoning is problematic as it justifies terminating individuals' life with social/mental issues who believe their life has no value when other methods to remedy that belief are available. Furthermore, in paediatric cases it is arguably impossible to make a judgment about the kind of life a baby will have. Clinicians can attempt to predict but they cannot say for definite, seen in the ongoing debate surrounding Down syndrome and terminations10,11. Furthermore, value comes from more than just health. Those considered 'healthy' for numerous social reasons lead lives with seemingly no value. However, suggesting a neonate's life not be protected for either having a disability or being born into difficult social situations e.g. as an addict due to maternal drug use would be absurd, rendering sanctity of life also useless in this discussion.

Intention verses foresight

A loophole to explain why AE and AS are illegal, yet doctor dictated PE is not, is that the latter foresees death but does not intend it. This can therefore be used to understand previous paediatric end of life decisions. Keown argues that a distinction exists between intended consequences of an act and foreseen consequences of act, as certain12. A surgeon knows that surgery will cause post-operative pain. This differs from the surgeon, who operates in order to induce pain. Furthermore, the pain is not the means by which the operation will succeed, therefore foreseeing death is different to intending and knowing a side effect of an action does not prove causation. However, the law can only work when consequences of an action are assessed over the act itself13. Therefore, in the case of Indirect Euthanasia, the purpose of an act could reasonably be pain relief, however PE has no similar purpose that doctors could cite apart from death.

As foreshadowing arguments are unconvincing, there appears no reason why AS and AE are illegal. This complicates Paediatric end of life decision making, as what is often portrayed as beneficent terminating of suffering, is through studying ethical theory, technically no different to illegal and condemned acts of AE and AS.

Conclusion

End of life decisions are an ethical maze. The law is not morally consistent, with study of ethical principles showing inconsistencies. Furthermore, such discussion usually centres on adult patients, with little discussion on paediatrics. This summary only touches upon some of the issues in this argument, with topics of omission verses act, personhood, dignity and the weight placed on medical opinion by the courts all further areas that should be considered. What is clear is that although an increased understanding of ethical theory is useful for one's own understanding, it does little to help the physician faced with a difficult paediatric end of life decision, as the more one delves into the theory, the more inconstancies and questions arise.

References

Santhakumaran S, Statnikov Y, Gray D, et al Survival of very preterm infants admitted to neonatal care in England 2008–2014: time trends and regional variation Archives of Disease in Childhood - Fetal and Neonatal Edition Published Online First: 07 September 2017. doi: 10.1136/archdischild-2017-312748

Dyer C. Doctors and parents agree care plan for toddler with terminal condition.

Robert Mendick. [Internet] The Telegraph: Charlie Gard court case: Parents have just 48 hours to prove untested, experimental technique works. July 2017, Accessed December 2019. Available from: https://www.telegraph.co.uk/news/2017/07/10/charlie-gards-parents-stressed-hopeful-ahead-new-court-hearing/

Mary MacLeod. [Internet] Great Ormond Street: Statement from Chairman of Great Ormond Street Hospital, 22 July 2017. July 2017. Accessed December 2019. Available from: http://www.gosh.nhs.uk/news/latest-press-releases/statement-chairman-great-ormond-street-hospital-22-july-2017

Dyer C. Doctors can withdraw treatment from child on life support, says judge. BMJ: British Medical Journal (Online). 2018 Feb 21;360.

Tripp J, McGregor D. Withholding and withdrawing of life sustaining treatment in the newborn. Archives of Disease in Childhood-Fetal and Neonatal Edition. 2006 Jan 1;91(1):F67-71

Re B (Adult: Refusal of Medical Treatment) [2002] EWHC 429.

R (Nicklinson) v Ministry of Justice [2014] UKSC 38.

Jonathan Herring, Medical Law and Ethics, (5th edn, Oxford University Press, 2014) 528

BBC Radio 4. Disability. Beyond Belief. 10/9/18. Available from: https://www.bbc.co.uk/programmes/b0bh431j [Accessed on 25/2/19]

A world without Down's syndrome? 2016.

Jonathan Herring, Medical Law and Ethics, (5th edn, Oxford University Press, 2014) 520

Andrew McGee, "Finding a way through the ethical and legal maze: withdrawal of medical treatment and euthanasia" [2005] 357, 373.



Dr Abidemi Otaiku, FY1, received an IME conference grant to present a poster at the Neuroethics Network meeting, Paris, June 2019. Read his report below

The Neuroethics of Dreaming? Ethical & Psychological Implications of Lucid Dream 'Immorality'

I recently had the opportunity to attend the Neuroethics Network 2019 Meeting which was held at the Brain and Spine Institute in Paris, an internationally recognised neuroscience research foundation, located on the grounds of the world famous Salpêtrière hospital. 

This was an intimate three day meeting that brought together early career researchers and established academics from around the world working in neurology, psychiatry, philosophy, ethics and neuroscience, to present and discuss the latest research findings in Neuroethics - the academic discipline concerned with the ethical, societal and legal implications raised by advances in neuroscience and neurotechnology.

Over the three days of the meeting, there were seven 'Athenaeum Seminars', which were essentially three to four themed talks grouped together in the programme, each covering a key topic in neuroethics. These ranged from highly pragmatic talks focused on ethical issues arising from treating complex psychiatric patients, in the 'Psychiatric Illness' seminar, all the way to the more esoteric and philosophical, but still fascinating talks, regarding machine consciousness and 'machine moral responsibility' in the 'Other Minds' seminar. Other seminars had a more interdisciplinary nature such as the seminar 'Forensic Psychiatry and Neurolaw' which explored how neuroscience may affect how we determine the legal culpability of offenders, and also, how neuroscience based interventions – such as so-called 'moral bioenhancement' may one day be used to prevent offenders from committing further crimes.

In addition to the talks included in the Athenaeum Seminars, there were also a number of e-poster presentations that were displayed throughout the meeting. I had the privilege of having an abstract for my research on the ethical and psychological implications of "immoral" lucid dream behaviour, accepted for an e-poster presentation at the meeting. I received some very helpful and interesting feedback from the delegates who had read my poster and had come to find me during breaks in the programme to discuss my work further. I am hoping to write up this research for submission to a medical ethics or neuroethics journal in the coming weeks, and I will most certainly be integrated some of the constructive feedback that I received throughout this meeting to improve the final manuscript.

Overall this was a very enjoyable and intellectually stimulating meeting, which introduced me to new areas of neuroethics and also increased my knowledge of areas that I had already been familiar with. Having this opportunity to present my work at an international conference at such an early stage in my career was a greatly informative experience, and has given me the confidence to submit my work to other international medical ethics or neuroethics conferences in the future.

I am very grateful to the IME for awarding me with a Postgraduate Conference Grant, which enabled me to attend and present my work at the Neuroethics Network Meeting, which I highly enjoyed, and which has also deepened my knowledge of the fascinating field of neuroethics.



Lydia Daniels, a medical student at Imperial College London received an IME Scholarship for her intercalated BSc in Medical Sciences with Humanities, Philosophy & Law, Sept 2018. Read the report of her project below

Should doctors be the arbiters in decisions to withdraw artificial nutrition and hydration from minimally conscious and vegetative patients?

My project focuses upon the decision to withdrawal artificial nutrition and hydration from patients in a vegetative or minimally conscious state. More specifically, I respond to the ruling in An NHS Trust v Y (2018) (hereafter, NHS v Y), by asking, should doctors be the ultimate arbiters of these decisions, according to the nature of the decision and the doctor's role?

The landmark case of Airedale NHS Trust v Bland (1993) (hereafter, Bland) ruled that indefinitely prolonging a life in a vegetative or minimally conscious state may not always be in the patient's best interests and hence that withdrawing ANH can be legal. The question of 'who decides' was granted legal clarity in NHS v Y, a Supreme Court ruling which confirmed that doctors can withdraw ANH from patients in permanent vegetative and minimally conscious states (PVS and MCS) without recourse to the courts, providing there is agreement between the doctor and the family that this is in the patient's best interests.

Making this decision in the clinical setting has clear practical and economic benefits. Halliday et al. (2015) states that NHS economists estimate the average court referral process costs around £122,000, and Holland et al. (2014) highlight the emotional distress that delays in withdrawal can cause families.

Beyond its practical implications, the ruling in NHS v Y prompts us to reflect on the critical question of whether doctors should be entrusted with decision-making power in these cases. Wicks (2019) claims this ruling threatens the patient's right to life by removing a neutral advocate in the court, and Foster (2018) argues the ruling could lead to paternalistic decision-making orientated around biomedical need rather than patient wishes. However, in order to make a more robust evaluation of this ruling we must take a broader view. As Lord Browne-Wilkinson states in Bland, 'behind the questions of law lie moral, ethical, medical and practical issues of fundamental importance to society' (p877). These issues need to be evaluated in order to test whether the ruling in NHS v Y reflects a fair balance of perspectives. My project uses a multidisciplinary approach by looking at the sociological background, legal context and professional implications of the ruling in NHS v Y to assess whether doctors are well-placed as arbiters of these decisions.

Firstly, I track the court's deference to the medical profession, particularly following the shift towards greater respect for patient autonomy demonstrated in the Mental Capacity Act (2005). Looking forward to NHS v Y, I have identified the element of deference in the ruling's assertion of doctors as arbiters of these decisions and its reliance upon professional regulation. However, I argue that this deference can be dissociated from traditional, paternalistic notions of the term, in light of how the profession and its guidance has evolved to become more patient-centred, as suggested by Devaney and Holm (2018).

I also investigate the nature of the decision doctors are being asked to make: firstly how the concept of best interests has evolved to become more holistic, and secondly whether withdrawal of ANH from PVS/MCS cases ought be to categorised as 'special cases'. My project considers that viewing PVS/MCS patients as deserving of a higher safeguarding standard than other patients is unjustified, and that the technicalities of diagnosis should not overshadow consideration of the patient's wishes. NHS v Y has rightly aligned these decisions with other life and death best interest decisions, however the significance of ANH and its withdrawal for families should be taken into account by doctors and discussed with sensitivity.

I then focus on whether clinical decision-making in the present day lends itself to withdrawal decisions, including discussion of the broader role of ethical decisions in medicine. Contrary to the concern that this ruling will incite paternalistic decision-making, empowering doctors to be arbiters of these particular decisions allows timely withdrawal of ANH when it is agreed to no longer be in the patient's best interests. I argue, therefore, that this model may demonstrate greater respect for the patient's wishes.

Paternalistic or idiosyncratic decision-making is mitigated against by the rigour of the professional guidance. I have considered that the measures which have been put in place within the guidance have created sufficient safeguards for the patient's right to life: consultation with those concerned for the patient's welfare, the expert 'second opinion' and the option to consult the courts.

My project concludes that the ruling in NHS v Y represents a positive step forward, asserting the doctor as the arbiter of these withdrawal decisions and recognising their ability to develop and exercise sound ethical decision-making, for the ultimate benefit of the profession and its patients.

Although this project has advocated doctors as the appropriate decision-maker in these sensitive and important scenarios, this must correspond with standards in clinical training. I recommend that medical schools ensure that they facilitate the development of sound ethical reflection and knowledge of the law to equip future doctors to face such scenarios. Incorporating this into a broader study of medical humanities would give students an appreciation of the profession's historical and sociological context as well as the narratives brought forwards by patients. This would encourage future doctors to properly evaluate their assumptions alongside patients' personal, religious and cultural values.

With heaviness of heart I recognise that the voices of PVS and MCS patients cannot contribute to this debate. Unless we are able to establish communication with these patients, the decision-maker must rely on second-hand accounts of previously-expressed feelings and values. It has been deeply moving to consider the impact of the decision-making process on the family, many of whom see withdrawing ANH as an impossibly difficult decision, but at the present time, the only feasible option to allow their relatives to die. This project also illuminates the need to encourage patients to draft advance decisions to refuse treatment where appropriate, ensuring these are properly documented and respected by healthcare teams.

I am incredibly grateful for the opportunity to explore this topic and extend particular gratitude to the IME for their financial support.

References

Airedale NHS Trust v Bland (1993) House of Lords, AC 789 (House of Lords)

An NHS Trust & Ors v Y & Anor (2018) Supreme Court, UKSC 46 (Supreme Court)

Mental Capacity Act (2005) (c.9) United Kingdom. London: HMSO. Available at: https://www.legislation.gov.uk/ukpga/2005/9/contents

Devaney, S. & Holm, S., 2018. The Transmutation of Deference in Medicine: An Ethico-Legal Perspective. Medical Law Review, 1 5, 26(2), pp. 202-224.

Foster, C., 2019. The rebirth of medical paternalism: An NHS Trust v Y. Journal of medical ethics, 1 1, 45(1), pp. 3-7.

Halliday, S., Formby, A. & Cookson, R., 2015. An assessment of the court's role in the withdrawal of clinically assisted nutrition and hydration from patients in the permanent vegetative state. Medical Law Review, 23(4), pp. 556-587.

Holland, S., Kitzinger, C. & Kitzinger, J., 2014. Death, treatment decisions and the permanent vegetative state: evidence from families and experts. Medicine, health care, and philosophy, 8, 17(3), pp. 413-23.

Wicks, E., 2019. An NHS Trust and others v Y and another (2018) UKSC 46: Reducing the Role of the Courts in Treatment Withdrawal. Medical Law Review, 15 1



Sarah Kelly, a medical student at University of Edinburgh received an IME Scholarship for her Master of Bioethics intercalated degree at Harvard University, August 2017. Read the report of her project below:

Handling Medical Error: Lessons to be learned from the US?

Medical error is a leading cause of death in Western nations.1 To address this problem, there have been recent public policy and legal reforms in the UK, including a statutory duty of candour and emphasis on institutional support and responsibility.2 These aim to engender a culture of openness and transparency in order to better prevent, address and learn from medical errors. However, there have been limited concurrent educational or institutional changes to support these statutory and professional obligations. Current practices around institutional handling of medical error continues to fall short of these professed policy and legal standards, as was borne out in the case of Dr. Hadiza Bawa-Garba.3 This case reignited debate around medical errors in the UK and how they ought to be handled and the medical community expressed outrage and fear over the decisions of the Court and General Medical Council.3 It highlighted the tension between the legal tendency to pinpoint blame and the professed aim of the medical community to acknowledge collective responsibility. In particular, many called for new ways to consider how institutions can better support individuals involved in instances of medical error.

Medical practice in the US has gained a reputation for its litigious culture and many individual hospitals are taking steps to avoid medical errors in order to reduce litigation and improve patient care.4 As part of the Masters of Bioethics programme at the Center for Bioethics, Harvard Medical School I interned with the Ethics Committee at Beth Israel Deaconess Medical Center. As part of this I assisted in ethics consultations requested by patients and clinicians and I took particular interest in their proactive approach to handling medical errors. This report considers some of the steps taken by BIDMC to address and reduce “preventable harm” and how they might be applicable to UK medical practice.

One method by which BIDMC aims to promote collective responsibility around medical error is by publishing quarterly reports of “Preventable Harm” online.5 On their publicly available website, the hospital lists the number of reported errors across many contexts, including surgical site infections, falls resulting in injury and disrespectful communication. This allows for ready identification of common errors, which has led to review and improvement in areas such as infection control. It aims to destigmatise error and share responsibility for improving practice between clinicians and management. By encouraging open dialogue around errors, the hospital aims to demonstrate to patients and families that they are actively identifying important contexts where mistakes commonly occur and proactively addressing them. This approach to transparency is relatively unique among Massachusetts hospitals and I could find no record of UK Health Boards doing anything similar. Given that data around numbers of incidents of medical error are commonly recorded by hospital management, it would be feasible to create comparable documentation in the UK—whether available online to the public, to clinicians only, or available upon request. Tracking such numbers might provide the institutions with a certain accountability to ensure that areas of common mistakes are acknowledged and could identify specific areas that require additional support.

Secondly, BIDMC (along with other Massachusetts hospitals) have introduced a Communication, Apology and Resolution (or “CARe”) initiative.6 Clinical staff are provided with training to encourage timely communication with patients and families.5 The “CARe” initiative is offered as means of encouraging collaboration between involved parties to prevent future errors. Meetings between parties following difficult events can provide valuable time for personal and team reflections on the surrounding circumstances and emotions and what might be done in future to improve practice. Decisions regarding whether to pursue litigation are complex and multifactorial but the provision of an alternative, non-adversarial but official pathway for dealing with mistakes is thought to reduce rates of legal action. Data tracking practice since 2001 at the University of Michigan has demonstrated that such a programme as led to a reduction in the number of patient injuries claims, system improvements following investigation of claims, shorter time to claim resolution, and significantly decreased costs for both the claimants and the hospital involved.4 Given that the cost of legal claims is known to be rising around the UK, such a system would not only encourage valuable (and confidential) individual reflection but also serve as a means of allowing funds to be spent on improving care rather than costly compensation.

 

Thirdly, BIDMC Ethics Committee provide consultations at any point of patients’ journeys. They can provide support, guidance and mediation around complex decisions, reducing harms like disrespectful communication. They also offer discussions and debriefs with patients, families, and clinicians after difficult events to ensure all perspectives are considered to improve practice. Ethics committees who provide such contemporaneous advice, actively meet with all stakeholders, and provide care-guiding advice remain rare in the UK;7 in the US, almost every hospital now has some form of committee providing such consultations.8 My experience demonstrated the role of committee members (with appropriate training in communication) being involved early in discussions with the medical teams after an error to advise on the most suitable methods and circumstances to discuss the errors with patient and family. They often worked in conjunction with the hospital legal team to counsel on how to broach the subject with honesty and integrity, while assuaging clinicians’ commonly-held fears around litigation.


In conclusion, medical error is a complex but important issue that must be acknowledged and addressed. My experience with BIDMC Ethics Committee has demonstrated some ways in which mistakes can be identified, tackled and prevented. Transparent record-keeping of numbers and patterns of incidents, explicit programmes to encourage communication and collaboration around medical error, and ethics committees to provide guidance and mediation are all examples of some methods that could be used to improve practice.

 

REFERENCES

 

  1. Makary, M, and Daniel, M. 2016. "Medical Error—The Third Leading Cause of Death in the US". BMJ, p.i2139.
  2. Health and Social Care Act 2008 (Regulated Activities) Regulations 2014
  3. Cohen, D. 2017. "Back to Blame: The Bawa-Garba Case and the Patient Safety Agenda". BMJ, j5534.

4.Michigan Medicine. University of Michigan (2019). The Michigan Model: Medical Malpractice and Patient Safety at Michigan Medicine. [online] University of Michigan. Available at: https://www.uofmhealth.org/michigan-model-medical-malpractice-and-patient-safety-umhs [Accessed 16 June 2019].

 

  1. BIDMC. Eliminating Preventable Harm at BIDMC. https://www.bidmc.org/about-bidmc/quality-and-safety/efforts-to-improve-quality-of-care/eliminating-preventable-harm-at-bidmc. [Accessed 16 June 2019]

 

6.Massachusetts Alliance for Communication and Resolution following Medical Injury (2019). MACRMI: About CARe. [online] Available at: https://www.macrmi.info/about-macrmi/about-dao/ [Accessed 16 Jun. 2019].

 

7.  Sokol, D. 2014. "Renewing the Call for Clinical Ethicists". BMJ 349. 2: g5342-g5342.

 

8. Aulisio, M. (2016). “Why Did Hospital Ethics Committees Emerge in the US?”. The AMA Journal of Ethics, 18(5), pp.546-553.

 

REFERENCES

  1. Makary, M, and Daniel, M. 2016. "Medical Error—The Third Leading Cause of Death in the US". BMJ, p.i2139.
  2. Health and Social Care Act 2008 (Regulated Activities) Regulations 2014
  3. Cohen, D. 2017. "Back to Blame: The Bawa-Garba Case and the Patient Safety Agenda". BMJ, j5534.

4.      Michigan Medicine. University of Michigan (2019). The Michigan Model: Medical Malpractice and Patient Safety at Michigan Medicine. [online] University of Michigan. Available at: https://www.uofmhealth.org/michigan-model-medical-malpractice-and-patient-safety-umhs [Accessed 16 June 2019].

  1. BIDMC. Eliminating Preventable Harm at BIDMC. https://www.bidmc.org/about-bidmc/quality-and-safety/efforts-to-improve-quality-of-care/eliminating-preventable-harm-at-bidmc. [Accessed 16 June 2019]

6.      Massachusetts Alliance for Communication and Resolution following Medical Injury (2019). MACRMI: About CARe. [online] Available at: https://www.macrmi.info/about-macrmi/about-dao/ [Accessed 16 Jun. 2019].

7.      Sokol, D. 2014. "Renewing the Call for Clinical Ethicists". BMJ 349. 2: g5342-g5342.

8.      Aulisio, M. (2016). “Why Did Hospital Ethics Committees Emerge in the US?”. The AMA Journal of Ethics, 18(5), pp.546-553.



In memory of The Very Rev'd Edward Shotter, Hon Vice-President, Institute of Medical Ethics

Ted Shotter

(29 June 1933 – 3 July 2019)

We are deeply saddened to inform you of the recent passing of Ted Shotter, Hon Vice-President, IME. Ted was a true pioneer in the field of medical ethics and leaves behind an outstanding legacy, both in the UK and worldwide. Prof Raanan Gillon, President of the IME, has written a tribute which he delivered at Ted's funeral service at Blythburgh Church ('the cathedral of the marshes') in Suffolk on 29 July, and which will give you a flavour of Ted's life and achievements...

Edward Shotter - a true innovator for medical ethics

I was introduced to Ted in the very early 1970s by the Dean for postgraduate students at University College Hospital London, Gerald Stern, who knew I had an interest in medical ethics. 'Ted Shotter is the man you need to meet' – and how right he was. However at that first meeting I told Ted- who had previously been a Student Christian Movement chaplain to medical students- that I very much doubted that I, an atheist Jew- albeit educated at Christ's Hospital-  could be much help in his very Christian – as I then perceived it to be- London Medical Group. He smiled- he might even have winked. 'If you'll forgive my saying so Dr Gillon I think you're a Godsend'. Ted had in fact been assiduously extending  the teaching of medical ethics to medical students of all faiths and none.  Well we were friends ever since and I was appointed another of his 'Assistant Directors' of the  London Medical Group.  The LMG as it was known, along with the similar student-led groups that arose in every UK medical school, was the first of Ted Shotter's three major contributions to medical ethics both in the UK and internationally, for it introduced outside experts into the teaching of medical ethics to medical students, and about subjects chosen by the students themselves. Since Hippocratic times medical ethics had been a zealously guarded doctors-only zone but Ted changed all that!

His second major contribution was the invention of the Institute of Medical Ethics, at first somewhat laboriously named the Society for the Study of Medical Ethics. That Institute is these days a significant UK charity promoting teaching, research and publication in medical ethics, and providing grants for doing so, thanks in large measure to its co-ownership- with the British Medical Association- of the very successful Journal of Medical Ethics. That journal is Ted's third major contribution to the development of national and international medical ethics, for it is now one of the world's leading bioethics journals. Again Ted's encouragement was hardly a hindrance to my application back in 1980, to be, after Alastair Campbell, the  JME's second editor- a post I somewhat greedily held for twenty years.

I was so pleased to have very recently been able to pass on slightly belated birthday greetings from his IME colleagues, friends and admirers and to reminisce with him about  the achievements I've just mentioned; and also to recall his honorary Fellowship of the Royal College of Physicians, as well as  his international recognition by the American Hastings Center in bestowing its prestigious Henry Knowles Beecher Award for  life time contributions to bioethics. The occasion was lunch at Westhall, nobly prepared for the two of us by Jane before she retired to her own sick bed. Ted was in wonderful form and several times said what a fortunate man he was in so many ways, and especially in his lovely and loving wife and family.

It was a terrible shock to learn that he had died the following day- but it remains my strong impression that he died a truly happy man.

Prof Raanan Gillon
President, Institute of Medical Ethics



Rachel Burnley, a student at University of Bristol Medical School, recently received an IME Institutional Grant to help fund the BSc Bioethics student-led conference 'Personal Beliefs within Medicine' held March 2019.

Click HERE to read the report which highlights an excellent example of a university involving students from local schools and colleges in ethics conferences as part of their widening participation scheme.