Decision-making at the beginning and end of life - seminar 11th February 2020

Posted by es213 at Dec 06, 2019 02:15 PM |
Examining whether and how advance planning documents facilitate improved patient-centred, autonomous decision-making in maternity and palliative care settings. FREE SEMINAR - bursaries available for early career academics/clinicians and students


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Why advance planning documents?

Sometimes it is useful to make healthcare decisions in advance. When these are written down they become an “advance planning document” that professionals and family members can use to help inform decisions about treatment. Encouraging people to consider their healthcare options and how these fit with their preferences and values aligns well with current NHS commitments to ensure care is more person-centred, and bioethical principles and theories around respecting patient autonomy.

Advance planning documents can be used in many healthcare contexts, but are common in maternity and end-of-life care. In end-of-life care, while there is evidence that having an advance care plan means patients and families have a better experience and a better death, patients and professionals still face challenges in working out how to use such plans in practice. In maternity care, there is little evidence that birth plans improve patient decision-making, birth experiences or result in better births, yet many women make them, often using the template available from the NHS website.

The Seminar 11th February 2020 at College Court, Leicester

This free to attend, one-day seminar will bring together clinicians, bioethicists, social scientists and members of non-profit organisations who work in the beginning and end of life, in order to discuss the role of advance planning documents in these areas of medicine, and what medical ethics can learn from how these documents are currently used. Students and early career clinicians/academics are welcome and funding is available.

Bursaries and Support for Early Career Academics/Clinicians and Students

Attending the seminar day is free. There are also 10 fully-funded places available for early career academics/clinicians, postgraduates and medical students. These bursaries will cover train travel to and from Leicester, and one-night accommodation at College Court, including meals at College Court. If you would like to be considered for a bursary, please email Dr Paton at and include: your name, institution, level or year of study/career, and a brief paragraph on why you would like to attend the conference by January 17th, 2020. Award winners will be notified by January 24th, 2020.


Accommodation is available at College Court, Leicester. Please contact College Court on 0116 244 9669, or visit to enquire about prices and availability.

College Court


10:30 – 11:00     Registration & coffee

11:00 – 11:15     Introduction to the day                                                                                 Alexis Paton

11:15 – 11:45     Decision making and autonomy during labour                                            Alexis Paton

11:45 – 21:15     Birth plans in action                                                                                     Jo Dickens

12:15 – 12:15     Discussion

13:15 – 14:15     Lunch

14:14 – 14:45     Decision-making and patient autonomy at the end-of-life                           Simon Woods

14:15 – 15:15     Preparing for Incapacity: How well planned is a law based on a double negative and too many positives?                                                                                                                                                              John Coggon

15:15 – 16:00     Small group discussions - current NHS templates for birth and advance care plans

16:00 – 16:45     Feedback from small group discussion

16:45 – 17:00     Wrap up and thank yous

Drinks Reception


Decision-making and autonomy during labour (Alexis Paton, University of Leicester)

Recent years have seen an increased policy emphasis in the NHS on enabling patient choice as a means through which to improve patient experience and make care more person-centred. At present little is known about the extent to which advance planning documents, and the policies that promote them, sufficiently facilitate and support decision-making such that patient autonomy is respected, informed consent achieved, and person-centred care delivered. This talk will discuss current research that examines the role these documents currently play in decision-making, and whether these documents are facilitating patient autonomy in clinical practice.

Birth plans in action (Jo Dickens, midwife, University of Leicester)

This talk will explore the potential differences between birth planning in primiparous women or those with uncomplicated obstetric histories compared to women who have experienced previous perinatal death and contend that birth planning in pregnancies subsequent to perinatal death warrants further study. Specialised antenatal clinic care is currently recommended in order to provide high quality and individualised clinical care and psychological support to women and their partners who have experienced previous perinatal death.  Pregnancies subsequent to perinatal death are generally characterised by increased anxiety and fear of what may go wrong again and the use of birth plans in such a cohort of pregnant women may be considered a tool to help communicate the aspects of care that are important to them and to help alleviate fear.   However, the general literature is contentious in its presentation of the effects of birth plans on birth outcomes and maternal satisfaction, and their influence on the relationship between the women and her maternity healthcare professional.  Furthermore, the evidence to support the notion that birth plans help women who have experienced previous perinatal death is limited.

Decision-making and patient autonomy at the end-of-life (Simon Woods, Newcastle University)

Autonomy has become something of a moral cornerstone in the liberal bioethics of medicine. Autonomy, for good or for ill, has become the great usurper of other more traditional values. Ruth Macklin for example has argued that autonomy ought to replace vaguer and (in her view) ‘useless’ concepts such as dignity though she may grudgingly nod towards Ronald Dworkin’s argument that to respect the dignity of a person we should honour their autonomy, either as contemporaneously expressed or, if incompetent, as expressed in a living will or in what they would have chosen to do if competent to decide. Autonomy, it is argued, deserves respect because it expresses or defines the person, their values, commitments, convictions, and interests that define who one is. For liberals, respect for autonomy respects the freedom a person ought to have to shape their life according to their own lights. It should therefore be obvious that autonomy plays a central role in the writing of any plan or directive that steers life towards its end. In my talk I will problematise the concept of autonomy and discuss the potential alternative accounts of living a good life towards death.

Preparing for Incapacity: How well planned is a law based on a double negative and too many positives? (John Coggon, University of Bristol)

The Mental Capacity Act 2005 (MCA) provides various ways for a person (P) to anticipate decision-making concerning her healthcare in the event that she comes to be deemed to have lost decision-making capacity in relation to a particular question. The ‘gold standard’ in this regard is through the generation of what the statute calls an “advance decision” (what is often labelled an “advance directive”). An advance decision allows P to have her values guide determinations of what treatments should not be provided, and to inform decisions between different viable options. In principle, the law places an advance decision (provided any necessary requirements are met) on a par with contemporaneous refusals or provision of consent. Beyond advance decisions, treatment decisions made on P’s behalf may also be guided by “any relevant written statement” made when she had capacity, or made by a person formally appointed by P in advance of her being deemed to have lost capacity. And even in instances where there is no advance planning in the senses outlined here, P’s values ought to inform best interests decision-making under the MCA by virtue of conditions that promote P’s participation in determining her best interests, and by a direct requirement to consider her “past and present wishes and feelings”… and “the beliefs and values that would be likely to influence [her] decision if [she] had capacity”. In reality, the MCA can be shown to leave wide discretion in relation to healthcare decisions for persons deemed to lack capacity because of its uncertain and skeletal nature. It can be argued that all decisions under the Act—including determinations of incapacity through to (non-)application of advance decisions—are circumscribed by what might be described as ‘best interests considerations’. This can be evidenced even by reference to judicial approaches to the MCA. This paper presents the complex context that gives rise to these claims, and problematises them by reference to two ‘negative’ aspects of the MCA that, it is argued, present fundamental problems. First, advance planning must be understood against an ‘ideal type’ framing of decision-making—i.e. that concerning persons who have capacity—that itself gives much more to negative rights (rights to be left alone) than it does to positive rights (rights to demand particular treatments or interventions). Second, advance planning must be understood in the context of a best interests standard that is perennially characterised, in its abstract form, in negative terms: by reference to what it is not, rather than what it is. When looking to what it is, we are given a long list of potential, conflicting answers, derived from differing sources. The possible rationales for such legal framing are considered by reference to their consequences, leading to questions about how satisfactory English mental capacity law is, and how


Professor John Coggon holds a Chair in Law at the University of Bristol Law School and is a founding member, and former co-Director, of the University of Bristol's Centre for Health, Law, and Society. He is also a member of the Bristol Population Health Science Institute, and the Centre for Public Health and an Honorary Member of the UK Faculty of Public Health (FPH). Professor Coggon‘s research focuses on the relationships between politics, morality, and health law and policy. He has written on various controversial questions, including end-of-life law, organ donation, and confidentiality, but his primary areas of interest are in public health ethics and law, and mental capacity law.

Joanne Dickens is a midwife who has gained a broad understanding of the issues of pregnancy and baby loss through her clinical work as a Bereavement Specialist Midwife at the University Hospitals of Leicester NHS Trust.  Joanne was the Clinical Advisor to the MBRRACE-UK Perinatal Confidential Enquiry Programme from 2016 to 2018.  Commencing her postgraduate studies at the University of Leicester in 2018, Joanne is undertaking ethnographic research looking at the role of perinatal mortality investigations.  Joanne was instrumental in establishing the Leicester Rainbow (subsequent pregnancy care following perinatal loss) Antenatal Clinic, based on the Manchester Rainbow Clinic model.  Developing birth plans for previously bereaved mothers is an integral element of Rainbow Clinic care.

Dr Alexis Paton is a lecturer with the SAPPHIRE (Social Science Applied to Healthcare Improvement Research) group, at the University of Leicester. She is a Trustee of the Institute of Medical Ethics, and Chair of the Royal College of Physicians’ Committee on Ethical Issues in Medicine. She has a particular interest in maternal safety and decision-making in maternity and neonatal care. Her research focuses on how sociological theory and qualitative research methods can be combined with bioethical frameworks to improve healthcare services. Using this sociological bioethics lens, her research identifies where existing policies and guidelines on decision-making require re-evaluating to facilitate improved support for patients and staff making healthcare decisions. By examining decision-making empirically, using qualitative methods, her research also explores the important role of the social sciences in the development of bioethical theories that are used in everyday medical practice.

Dr Simon Woods is Reader in Bioethics and Executive Director of the Policy Ethics and Life Sciences Research Institute (PEALS), an interdisciplinary bioethics research centre at Newcastle University. Simon has a longstanding interest in developments within the life sciences, medical ethics and bioethics more broadly. His research explores the social and ethical aspects of new and emerging biotechnologies but has also considered the social and ethical implications of living with chronic and progressive disease. Simon holds bachelor and doctoral degrees in philosophy and over the past 16 years he has pursued a career of teaching and research within bioethics. Simon has considerable expertise in the ethics of end of life decisions and his recent work has been looking to the challenges of living well with dementia.






















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