Workshop: Suffering and Autonomy at End of Life

6 January 2017

University of Glasgow, March 2017 (date to be confirmed)

We are pleased to announce a series of events, to be held in Glasgow in 2017-2018, discussing the relationship between suffering and autonomy, with a particular focus on end of life care.

In each event, one space is reserved for a graduate student or early career researcher to present a paper which addresses the theme of the workshop. To that end we invite submissions from interested parties, addressing the themes of the series (as detailed below). We will pay all accommodation and subsistence costs, and also reasonable travel costs within the UK.

Demographic changes in western liberal democracies challenge established theory and practice concerning end of life care. This requires advances not only in the medical science of geriatric and palliative care, but also in the underlying philosophies of old age, illness, and dying, and how they relate to autonomy. Autonomy is an ideal according to which people successfully shape their lives in accordance with the values they have chosen. Autonomy at the end of life is a crucial dimension of this ideal.  Answers to the urgent questions concerning the design and delivery of end of life care require a deeper understanding of, for example, the nature and role of the suffering including its effects on consent, well-being, decision-making, the integrity of a person, and their quality of life.

The first event will be a one-day workshop, to be held in March 2017, and will answer the question: how does suffering augment autonomy at end of life?

Physical and emotional suffering can have significant value. For instance, a person’s perspective on what’s valuable or important may be enhanced through their suffering and their understanding about who they are and what they care about may be advanced. Suffering at the end of life plausibly often yields just such enhancements and advancements, therefore providing distinctive opportunities for the augmentation of autonomy. At this workshop, we thus consider how suffering augments autonomy at the end of life.

Further details (including dates and registration details) will be announced soon.

For the first workshop, full papers of up to 6,000 words should be submitted to ben.colburn[at]glasgow.ac.uk by 1 February 2017, with a separate note indicating the applicant’s career status.* The successful presenter will be informed by 1 March 2017.

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Seminar: Law (and the place of law) at the end of life

10 October 2016

Tuesday 1 November 2016 16.00-18.00

Royal College of Nursing, 20 Cavendish Square, London W1G 0RN

Sir Mark Hedley, former judge of the High Court of England and Wales, joins leading barristers Alex Ruck Keene (Visiting Research Fellow at KCL) and Eloise Power in a discussion about this complex and interesting topic.

To reserve a free place please contact legal.services.events [at] rcn.org.uk before Wednesday 26 October 2016.


Seminar: My Life, My Decision: A new approach to advance care planning

28 September 2016

Thursday October 20, 2016

1:30 PM – 5:00 PM

Church House Westminster, Deans Yard, London

A free seminar organised by Compassion in Dying:

My Life, My Decision was an ambitious, multifaceted programme of work delivered by Compassion in Dying and its partners, and funded by the Big Lottery’s Silver Dreams Fund to run from July 2014 until October 2016.

Its aim was to support people aged over 50 to think about and plan their care in advance, helping to ensure they have the death that is right for them.

The project tried and tested new ways of engaging people and communities in planning for the end of life. It developed a service that placed the individual at the centre of their care decisions and supported them to express and record their wishes in a legally binding way. It also developed effective models of partnership working between health services and voluntary organisations, maximising the capacity of healthcare professionals by providing support to their patients to plan their care.

More details and registration information available via Eventbrite.


Radio: iPM on a patient with capacity having her life-sustaining pacemaker deactivated

27 September 2016

Last year, the Radio 4 programme iPM ran an item about an adult patient with capacity seeking to have her pacemaker deactivated:

“Who can make decisions about a pacemaker once it’s in my body?’ – After a listener got in touch with an ethical dilemma, we explore what the UK law says about switching off pacemakers and other implanted medical devices.”

Last week, the programme updated the story with details of the deactivation and eventual death of the patient.

“The listener who fought for her pacemaker to be turned off and the US doctor who helps to stop his dying patients’ hearts.”

 

 


Most people want it, but the UK isn't ready to legalise assisted dying

28 May 2015

Isra Black, King's College London

The same week that the UK press reported the death of Jeffrey Spector, who travelled to Switzerland to die rather than face a life of pain and paralysis, the Scottish parliament has rejected the general principles of the Assisted Suicide (Scotland) Bill by 82 votes to 36.

The bill sought to decriminalise assistance in the suicides of registered medical patients in Scotland aged 16 years and above with a terminal or life-shortening illness or progressive condition who experienced an unacceptable quality of life without prospect of improvement. It set out a complex procedure that lawful assisted suicides should follow.

Patrick Harvie MSP, who took charge of the Assisted Suicide (Scotland) Bill following the death of Margo Macdonald MSP has pledged to continue the campaign:

Spector, a 54-year-old Lancastrian with an inoperable spinal tumour, had received assistance to end his own life at the Swiss Dignitas clinic.

Spector, who was accompanied in his final moments by his family, stated that the law prohibiting assisted suicide in England and Wales had pushed him to end his life earlier than he would otherwise have wished. In an interview with reporters, quoted in The Independent, he said:

I don’t want to take the chance of very high-risk surgery and find myself paralysed … If the law was changed then what difference if I had an operation? I could do it after. Rather than go late, I am jumping the gun.

Meanwhile, Lord Falconer has announced his intention to reintroduce an Assisting Dying Bill for England and Wales into the House of Lords in Westminster.

His Assisted Dying Bill which would have permitted adult residents whose terminal illness was likely to cause death within six months to request lethal medication from doctors if a specific procedure were followed, ran out of time in the most recent parliamentary session.

Public support

While recent independent polls (commissioned by organisations in favour of permitting assisted suicide) show very high levels of public support for legalising some form of assisted suicide in Scotland (69% in favour) and Britain as a whole (82% in favour), the prospects for a change in the law are grim, particularly in Scotland.

While support for assisted suicide has more than doubled in the Scottish parliament in the four years since Margo Macdonald’s End of Life Assistance (Scotland) Bill, there still needs to be a considerable shift in political will before a future bill can succeed.

The rejection of Patrick Harvie’s bill on principle shows that even a measure whose drafting and purpose is not criticised for “significant flaws” is unlikely to become law.

Things may look rosier in Westminster, since the recent Assisted Dying Bill passed the second reading stage at which the principle of a bill is debated and usually put to a vote. However, there was no vote on the principle of the bill at this stage, because supporters and opponents of the bill agreed that the issue deserved further debate and line-by-line scrutiny at the committee stage. So the fact that the Assisted Dying Bill made it to committee does not in this case show that peers are favourable to the legalisation of assisted suicide.

It is also very easy to kill legislation in committee. Parliament sets aside very little time for scrutiny of legislation that is not part of the government’s programme – such as Lord Falconer’s bill. If opponents table more amendments than there is time available to discuss them, a bill will fail. This is exactly what happened to the Assisted Dying Bill; few of the 175 tabled amendments were discussed over two days of debate. After the committee stage, there are two further stages (report and third reading), which also present opportunities to debate or amend a bill out of existence.

Even if an assisted suicide bill could be agreed in the House of Lords, it would then have to survive a near identical legislative process in the House of Commons. Let’s not forget that MPs, unlike peers, do not have the luxury of being unelected and may be nervous about supporting legal change on a controversial moral issue in the face of supremely well-organised opposition.

Moral case

Supporters of assisted suicide need to convince politicians and the public that legalisation will not endanger the lives of “vulnerable” people. The empirical evidence from jurisdictions where assisted dying is lawful can help show this. The challenge is to communicate key findings from this complex and incomplete data set in a political moment.

Tactically, it may be desirable to talk less about autonomy and more about equality. Individuals should be able to choose assisted suicide not because choice has supreme value, but because respecting others’ choices on how to live and die respects them as equals.

People who seek assisted suicide and the vulnerable who worry about the impact of assisted suicide want the same thing: for their life plans to be recognised as having equal moral worth.

Supporters of assisted suicide should take note that in the Tony Nicklinson case, the UK’s Supreme Court dropped a strong hint that restricting suicide assistance to the terminally ill may fail to show due respect for all individuals’ right to private life as protected by article 8 of the European Convention on Human Rights. Supporters may therefore need to reconsider who would be eligible for an assisted death in their proposals for law reform.

The Conversation

Isra Black is PhD candidate at King's College London.

This article was originally published on The Conversation.
Read the original article.


Job: Researcher position in European law and ethics on end-of-life decisions

29 August 2014

Researcher position

European law and ethics on end-of-life decisions

TV-L E13 50% for one year or 100% for 6 months

Starting date: November 1st, 2014, or later

Job description:

A reseacher position is available in the area of end-of-life law and ethics in the context of a large, interdisciplinary European research project called “ALS-CarE: A Programme for ALS Care in Europe”, funded by the German Ministry for Education and Research (BMBF) within the “Joint Programme on Neurodegenerative Disease Research” (JPND). The post will be situated at the Technical University of Munich, supervised by Ralf J. Jox, Assistant Professor in Medical Ethics, from the Institute of Ethics, History and Theory at the University of Munich.

The post holder will be expected to conduct a review of current legislations of major European countries on end-of-life decisions and advance care planning. The special focus of the review will be on neurodegenerative diseases, in particular Amyotrophic Lateral Sclerosis (ALS). The post holder will be a member of the Munich project group that also conducts an international empirical survey among end-of-life attitudes of ALS patients.

Your profile
Candidates should be graduates in law, alternatively in medicine, philosophy or bioethics, but with some knowledge in medical law. A PhD or JD is an asset, but not mandatory. Candidates should have demonstrated interest in bioethics or applied ethics, especially regarding end-of-life issues. Due to the international outlook of the project, spoken and written fluency in English is essential. Native English speakers are especially encouraged to apply. Residence requirements can be discussed on an individual basis.

Our offer

We offer close supervision in a small group of highly experienced researchers. The post holder will have the opportunity to publish first-author articles in high-ranked journals and present at international conferences. The job offers home-based work and temporal flexibility.

Disabled candidates are preferentially considered in case of equal qualification. Applications from women are encouraged. The position is temporary and project-based.

Please send your application (including letter of motivation, CV, certificates, 1-2 writing examples), preferentially by e-mail, to:

Ralf J. Jox, MD, PhD

Institut für Ethik, Geschichte und Theorie der Medizin

Ludwig-Maximilians-Universität München

Lessingstrasse 2, D-80336 München, Germany

ralf.jox [at] med.lmu.de

Closing date: October 1st, 2014


Comment: what is the future of the policy for prosecutors on assisting or encouraging suicide?

25 June 2014

In 2013, Martin, one of the claimants in the case known as Nicklinson was successful in his claim at the Court of Appeal. By a majority of 2-1, the Court of Appeal ruled that the Director of Public Prosecutions’ Policy on prosecuting cases of assisted suicide did not allow professionals such as doctors, nurses, carers and social workers to foresee the consequences of providing such assistance.

In the Policya group of factors in favour of prosecution are designed to ensure that assistance in suicide remains an activity carried out by inexperienced individuals without the open assistance of professionals or amateur organisations (as in Switzerland):

(11) the suspect was unknown to the victim and encouraged or assisted the victim to commit or attempt to commit suicide by providing specific information via, for example, a website or publication;

(12) the suspect gave encouragement or assistance to more than one victim who were not known to each other;

(13) the suspect was paid by the victim or those close to the victim for his or her encouragement or assistance;

(14) the suspect was acting in his or her capacity as a medical doctor, nurse, other healthcare professional, a professional carer [whether for payment or not], or as a person in authority, such as a prison officer, and the victim was in his or her care;

(16) the suspect was acting in his or her capacity as a person involved in the management or as an employee (whether for payment or not) of an organisation or group, a purpose of which is to provide a physical environment (whether for payment or not) in which to allow another to commit suicide.

The very role of such professionals was therefore a factor in favour of prosecution (factor 14), while factors against prosecution might also be present, including a compassionate motive (factor 2 against prosecution). The DPP was therefore asked to revise the Policy. Instead, he announced his intention to appeal and today the Supreme Court allowed his appeal. The court would not require the DPP to go further than he did in response to the House of Lords decision in Purdy by providing a list of factors for and against prosecution when deciding whether prosecution would be in the public interest. Martin had sought to force the DPP to identify a class of cases in which prosecution would not be in the public interest. Lord Hughes concluded (at [277]):

It is legitimate to say that Parliament no doubt recognised that there might be persons who commit the [Suicide Act 1961] section 2(1) offence, whom it turns out not to be in the public interest to prosecute. That, however, is true of every offence in the criminal calendar. It is not legitimate to suppose that there is a category of such persons which can be identified in advance by the Director of Public Prosecutions. She cannot do so without crossing the constitutional boundary into either changing the law or giving advance exemption from it to a group of potential offenders.

However, this is not the end of the story in relation to the policy for prosecutors. The DPP will need to consider whether the policy should be revised to reflect a claim made by Lord Judge (dissenting on this point) in the Court of Appeal which was accepted by counsel for the DPP before the Supreme Court ([143]):

185. … [I]t seems clear to me that paragraph 14 addresses the risks which can arise when someone in a position of authority or trust, and on whom the victim would therefore depend to a greater or lesser extent, assisting in the suicide in circumstances in which, just because of the position of authority and trust, the person in authority might be able to exercise undue influence over the victim. As I read this paragraph it does not extend to an individual who happens to be a member of a profession, or indeed a professional carer, brought in from outside, without previous influence or authority over the victim, or his family, for the simple purposes of assisting the suicide after the victim has reached his or her own settled decision to end life, when, although emotionally supportive of him, his wife cannot provide the necessary physical assistance.

186. … Naturally, it would come as no surprise at all for the DPP to decide that a prosecution would be inappropriate in a situation where a loving spouse or partner, as a final act of devotion and compassion assisted the suicide of an individual who had made a clear, final and settled termination to end his or her own life. The Policy … deliberately does not restrict the decision to withhold consent to family members or close friends acting out of love and devotion. The Policy certainly does not lead to what would otherwise be an extraordinary anomaly, that those who are brought in to help from outside the family circle … are more likely to be prosecuted than a family member when they do no more than replace a loving member of the family, acting out of compassion, who supports the ‘victim’ to achieve his desired suicide. The stranger brought into this situation, who is not profiteering, but rather assisting to provide services which, if provided by the wife, would not attract a prosecution, seems to me most unlikely to be prosecuted. In my respectful judgment this Policy is sufficiently clear to enable Martin, or anyone who assists him, to make an informed decision about the likelihood of prosecution.

Having accepted that a person acting in his or her professional capacity in these circumstances (for example a professional carer, motivated by compassion, who enters into a non-profiteering arrangement to accompany a patient for whom he or she was not previously caring and who has already decided to go to Dignitas) would be unlikely to be prosecuted, Lord Neuberger invited the DPP to change the policy accordingly ([146]):

Given that, in an important respect, the 2010 Policy does not appear to reflect what the DPP intends, it seems to me inevitable that she will take appropriate steps to deal with the problem, particularly in the light of the impressive way in which her predecessor reacted to the decision in Purdy. However, if the confusion is not sorted out, then, at least in my view, the court’s powers could be properly invoked to require appropriate action, but, as I have said, it seems very unlikely that this will be necessary.

If this remains the DPP’s position, then the policy could possibly be amended to limit the applicability of the current factor 14, though Lords Mance ([193]) and Sumption ([251]) were sceptical that the policy could be so amended without rendering it internally inconsistent or incoherent. Lady Hale, though, was in favour of a more far-reaching review of the policy (at [323]), returning to an argument she made in Purdy about the role such a policy could play in ensuring that the interference with the claimants’ rights under Article 8(1) could be justified under Article 8(2) (which neatly takes us back to the other argument in this case):

It seems to me, as it seemed in Purdy, that the policy has two purposes. The first, and uncontroversial, purpose is to make the way in which decisions to prosecute will be taken sufficiently clear to meet the Convention requirement that the interference be “in accordance with the law”. This entails accessibility (hence the need to clarify the policy) and foreseeability, as well as consistency and lack of arbitrariness. We can debate endlessly what the Strasbourg court meant, at para 76 of Pretty (quoted by Lord Neuberger at para 32 above) by first stating that the “Court does not consider therefore that the blanket nature of the ban on assisted suicide is disproportionate” and going on to discuss the flexibility of enforcement in the next sentence. It might have been reverting to the “non-arbitrary” requirement of legality. Or it might have been continuing its discussion of proportionality. I ventured to suggest in Purdy (paras 63 and 64) that the policy may have a part to play in securing that section 2(1) does not operate as a disproportionate interference with the right protected by article 8 and now so clearly articulated in Haas v Swizerland. The underlying theme of the factors which the DPP considers relevant to whether a prosecution will be in the public interest is clearly to identify the sort of cases which might be covered by the exception proposed above. The time may therefore be ripe for a review to see whether further progress can be made in that direction without offending against the constitutional prohibition of “dispensing with the laws”. But I agree that there is no need to make an order requiring the DPP to conduct a review. She will no doubt be considering the position in the light of the judgments in this Court and in the Court of Appeal.

What can we conclude at this point? Perhaps only that there is no evidence that this DPP will take a more restrictive position on the public interest in prosecuting these cases than her predecessor. Whether she and her team will revise the policy to make prosecutions less likely and thereby possibly encourage greater professional involvement in assisted suicide remains to be seen. As I wrote in response to the decision of the Court of Appeal:

The advantages of open medical involvement in assisted suicide are manifold, and include a lower risk of botched suicides and suffering during the suicide or attempted suicide (as illustrated in the Gilderdale case) and the possibility of screening for possibly hitherto unknown mental disorders including depression. At present, the expertise necessary to achieve a safe, peaceful assisted death is concentrated in healthcare professionals, and they are the main gatekeepers of the medications needed to accomplish this. A Policy under which those seeking assistance in dying cannot access this expertise, even in the form of advice, nor the appropriate medications, and where others are prevented from developing and disseminating such expertise, is undesirable. Allowing assistance from healthcare professionals only on a “one off” basis would frustrate the development of expertise in assessing the validity of requests for assistance. It should be possible to assign weight to the relevant factors that would not prevent compassionate, professional and expert assistance while still avoiding what the Lord Chief Justice has termed “profiteering” (at [184]-[186]).