Radio: In the child’s best interests on BBC Radio 4

4 December 2018

BBC Radio 4, Sunday 9 December 2018, 17.00 GMT or via BBC Sounds

This programme features KCL MA Medical Ethics and Law alumnae Victoria Butler-Cole and Sarah Barclay, co-founder (with alumnus Dr Simon Meller) and Director of the Medical Mediation Foundation.

How and when should the decision be made to end the life of a critically ill child?

The BBC’s Medical Correspondent Fergus Walsh reflects on the legal and ethical challenges raised by controversial and emotionally charged cases, like those of Charlie Gard and Alfie Evans.

Their impact reverberated around the world, prompting protests on the streets, an outpouring of emotion on social media and the vilification of hospital staff. Even the US President and the Vatican got involved. Though these cases were very different, in each the parents were locked in a bruising battle with the hospital for the right to make decisions about how and where to treat their children.

The current legal test focuses on what is in the child’s best interests and, in court, the hospital, the parents and the child all have separate legal representation.

But the potentially adversarial nature of the court system and the presence of ferocious debate on social media means these intensely difficult decisions can became even more emotionally charged.

The programme examines whether it’s possible to improve the current system, to prevent more cases reaching court and whether the legal process itself could be improved.

Advertisements

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.


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