Lecture: Mary Donnelly on Rebalancing Empowerment and Protection: Evolving Legal Frameworks for Impaired Capacity

28 November 2016

Thursday 8 December 2016, 18:00 – 19:00

UCL Gustave Tuck Lecture Theatre, Wilkins Building, Gower Street, London WC1E 6BT

Current Legal Problems series

Speaker: Professor Mary Donnelly (University College Cork)
Chair: TBC
Accreditation: This event is accredited with 1 CPD hour with the SRA and BSB

Admission: Free, Registration required (here)

The past decade has seen a notable evolution in the normative context for law’s response to people with impaired capacity. Driven by a range of factors, including greater recognition of human rights (perhaps most notably through the Convention on the Rights of Persons with Disabilities) and better empirical understandings, a rhetoric of inclusion and empowerment has replaced traditional approaches centred on control and protection.  Law reform projects in various jurisdictions (Australia, Canada, Ireland, Northern Ireland) have attempted to develop legislative frameworks to give effect to these emerging norms. Yet there is also another narrative. Concerns are expressed (perhaps most commonly by frontline professionals: healthcare professionals, lawyers, social workers and sometimes by family members of people with impaired capacity) that something important may be lost where there is a devaluation of protective norms. There is also a dissonance between the abstract ideals of human rights on the one hand and on the other, the complex corporeal, economic, family, phenomenological and social context within which people with impaired capacity, and those who care for/about them, live.

Tensions between empowerment and protection norms and between abstract, rights-based and contextual, evidence-based policy drivers are inevitable by-products of law’s evolution and they play a necessary role in the development of the law in this area. Rebalancing is a process and not a once-off event. And, of course, as revealed by even a minimal consideration of earlier legal responses to impaired capacity, there is a good deal of room for evolutionary wrong-turns and for unexpected and undesirable consequences. Placing current debates about how law should respond to impaired capacity within an evolutionary context, this paper identifies and evaluates the range of ways in which contemporary tensions may be resolved.

About the speaker:

Mary Donnelly is a Professor in the Law School, University College Cork. Her books include Consent: Bridging the Gap Between Doctor and Patient (Cork: Cork University Press, 2002); Healthcare Decision-Making and the Law: Autonomy, Capacity and the Limits of Liberalism (Cambridge: Cambridge University Press, 2010) and The Law of Credit and Security (Dublin: Round Hall Thomson Reuters, 2011; 2nd ed, 2015) and she is co-author of End-of-Life Care: Ethics and Law (Cork University Press, 2011) and Consumer Law: Rights and Regulation (Dublin: Round Hall Thomson Reuters, 2014) and co-editor of Ethical and Legal Debates in Irish Healthcare: Confronting Complexities (Manchester University Press, 2016).

She has collaborated on projects funded by the European Commission, the Irish Research Council for the Humanities and Social Sciences, the National Children’s Office and the Irish Hospice Foundation and has acted as consultant for public agencies and legal firms.  She is/has been a member of the Expert Group to review the Mental Health Act 2001 and of the HSE National Consent Advisory Group and the HSE National Assisted Decision Making Steering Group.


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.”

 

 


Comment: Advance decisions to refuse treatment (ADRT) forms in dementia

16 July 2014
I’ve done a little research on advance decisions to refuse treatment (ADRT) forms in dementia for an upcoming BBC Radio 4 episode of Inside the ethics committee, to be broadcast on 31 July 2014 at 9am.
 
The Alzheimer’s Society have a form and a fact-sheet. Dementia Care also has some information on their website which includes a link to an Age UK factsheet.
 
Personally, I prefer the Compassion in Dying form (plus accompanying guidance notes) to the Alzheimer’s Society form. The main reason for this is that the triggering condition for the refusal (i.e. when the refusal is to become effective) is rather strange in the Alzheimer’s Society form. It’s when ‘the gravity of my condition/suffering is such that treatment seems to be causing distress beyond any possible benefit’. The goal of an ADRT is to refuse treatment which others would or might think is in your best interests (otherwise there’s little point – if everyone agrees the treatment is not in your best interests then it would not be lawful to give it under the Mental Capacity Act 2005). This triggering condition doesn’t seem to me to leave much (if any) scope for this. If the treatment causes distress beyond any possible benefit then it is hard to see how it could be given as it would not be in your best interests. The balancing of burdens against benefits is exactly what the courts (and the Mental Capacity Act Code of Practice) require in order to reach a decision on your best interests.
 
You can contrast this with the triggering conditions (there is a choice) in the Compassion in Dying form, the most relevant one of which is: ‘I suffer serious impairment of the mind or brain with little or no prospect of recovery together with a physical need for life-sustaining treatment/interventions’. Here it is quite possible that different people will have different views on whether life-sustaining treatment is in your best interests as the ADRT will be triggered (in dementia patients) once their condition constitutes a serious impairment and there is little or no prospect of recovery. So the ADRT will have a role to play.
 
Compassion in Dying also have a free phone line you can call to get help in filling out the form; details are provided within the form as well as on their website.
 
NB: Compassion in Dying has a relationship with Dignity in Dying. They are separate organisations but they work out of the same offices.

Radio: restraining patients in intensive care

16 July 2012

Inside the Ethics Committee

BBC Radio 4, Thursday 19 July 2012, 09.00-09.45, repeated 21.00-21.45, available via the iPlayer or as a podcast

From the programme’s website:

Monty has double pneumonia and is in intensive care. A ventilator is breathing for him and he’s sedated so that he can tolerate a breathing tube in his throat. Given the risks associated with being intubated in this way, the team are keen to get him off the ventilator as soon as possible, so that he can start breathing for himself.

After several days of antibiotics, Monty improves. So they stop the sedation, wake him up, and remove the breathing tube. The plan is for Monty to wear a mask to support his breathing until he is strong enough to breathe for himself.

But Monty is autistic, and as soon as the mask is placed on his face, he pushes it away. The nurses put it back on, but again he bats it off. The nurses persist, but Monty struggles and lashes out at them. Exhausted, he starts going blue. Fearing for Monty’s life, the team re-sedate him and put him back on the ventilator.

As his life hangs in the balance, what lengths should the medical team go to to get Monty to accept the life-saving treatment he is struggling against? Should they physically restrain him?

Joan Bakewell chairs the discussion between medical and ethical experts.


Lecture: Professor Genevra Richardson on mental disorder and the law

3 February 2012

Thursday 16 February 2012
Mental disorder and the law: A decade of learning?
Current Legal Problems Lecture: 2011-12
Professor Genevra Richardson, King’s College London
Time: 6 – 7pm
Venue: UCL Faculty of Laws
Open to all, free of charge

Well over ten years ago the New Labour government embarked on a programme of mental health law reform. It was an often heated and unedifying process but out of it have emerged twenty first century amendments to an old statute and some more twenty first century amendments to a new statute. These two statutes deal respectively with mental disorder and mental incapacity, two closely related concepts that both law and medicine struggle to define in the abstract and to apply in practice. This paper will return to some of the themes raised in a CLP lecture delivered in 2001 and will consider how far we have come since then, what lessons we have learned, what questions we should have been asking and what the prospects might be for the future.

Genevra Richardson has been Professor of Law at King’s College London since 2005. Before coming to King’s she was Professor of Public Law at Queen Mary, University of London. She has a long-standing interest in law and psychiatry. In 1998-9 she chaired the Expert Committee established by the Department of Health to advise ministers on the reform of mental health legislation. In recent years she has conducted research into the assessment of mental capacity with a team from the Institute of Psychiatry. She has been a member of Council of the Medical Research Council and the Administrative Justice and Tribunals Council and is currently a trustee of the Nuffield Foundation. She is an honorary fellow of the Royal College of Psychiatrists.


Radio: drama about capacity and best interests

14 July 2011

Best Interests by Sasha Hails, BBC Radio 4, 14 July 2011, 14.15-15.00, available after broadcast via the iPlayer

From the programme’s page:

When a confused young man with no I.D. and a Dr. Who fixation is brought into hospital, the staff have clear rules about how decisions can be made on his behalf. But when he starts to make his own wishes clear, are they right to listen?

Benji … Gunnar Cauthery
Fay … Clare Perkins
Iain … Simon Bubb
James … Carl Prekopp

with Peter Polycarpou, Gerard McDermott, Jonathan Forbes, James Lailey, Alex Tregear, Susie Riddell and Elaine Claxton.

Script Consultant …. Jim Blair, St George’s Healthcare NHS Trust

Produced and directed by Jonquil Panting


Parliamentary debate: End of life assistance (Scotland) Bill

17 November 2010

“Publication of the Stage 1 Report on the End of Life Assistance (Scotland) Bill – Thursday 18 November 2010 and Stage 1 Debate on the End of Life Assistance (Scotland) Bill – Thursday 25 November 2010

The report, along with a news release, will be available from about 7am on the Parliament’s website.

The Scottish Parliament will hold its Stage 1 debate on the Bill on Thursday 25 November 2010. This debate will commence at 2.55pm in the debating chamber of the Scottish Parliament.

Following this debate the Parliament will vote on the Bill at Stage 1 (as part of Decision Time at 5pm on 25 November). If the Parliament approves the Bill, it will proceed to Stage 2 (Committee amendment stage). If the Parliament does not approve the Bill, it will fall.

You will be able to watch the debate online at www.holyrood.tv.”