Medical Ethics

a doctor's stethoscope lying on a desk

Our medical ethics research program, led by Professor Wilkinson, investigates ethical issues arising from advances in medicine, as well as long-standing and controversial questions in medical care. We have a strong research stream relating to the medical care of children, and issues arising in intensive care. Other active research topics include abortion, conscientious objection, organ transplantation, resource allocation, and collective responsibility in healthcare. Professor Julian Savulescu is author of several key textbooks in medical ethics, including 'Medical Ethics & Law' (co-authored with Dominic Wilkinson, Tony Hope and Judith Hendrick).

Publications

Books

Selgelid, M. J., McLean, A., Arinaminpathy, N. and Savulescu, J., (Eds.) (2011). 'Infectious Disease Ethics: Limiting Liberty in Contexts of Contagion', (Springer)

Wilkinson D. Death or Disability? The Carmentis machine and decisions for critically ill children. Oxford University Press 2013.

Wilkinson, D., Savulescu, J., Hope, T. and Hendrick, J., (2019), 'Medical Ethics and Law - The Core Curriculum', 3rd Edition, (Churchill Livingstone)

Wilkinson, D., Savulescu, J., Hope, T. and Hendrick, J., (2008), 'Medical Ethics and Law - The Core Curriculum', 2nd Edition, (Churchill Livingstone)

Journal Articles and Chapters

2024

Earp, B. D., Porsdam Mann, S., Allen, et al., (2024), 'A Personalized Patient Preference Predictor for Substituted Judgments in Healthcare: Technically Feasible and Ethically Desirable', American Journal of Bioethics, Vol: 24(7): 13-26
[PMC11248995]

Giubilini, A., Schuklenk, U., Minerva, F. and Savulescu, J., (2024), 'Conscientious commitment, professional obligations and abortion provision after the reversal of Roe v Wade', Journal of Medical Ethics, Vol: 50(5): 351-358 [PMC11103303]

Lynch, F., Best, S., Gaff, C. L., Downie, L., Archibald, A. D., Gyngell, C., Goranitis, I., Peters, R., Savulescu, J., Lunke, S., Startk, Z. and Vears, D. F., (2024), 'Australian public perspectives on genomic newborn screening: Risks, benefits and preferences for implementation', International Journal of Neonatal Screening, Vol: 10(1): 6 [PMC10801595]

Savulescu, J., Giubilini, A., Vandersluis, R. and Mishra, A., (2024), 'Ethics of artificiaI intelligence in medicine', Singapore Medical Journal, Vol: 65(3): 150-158 [PMC7615805]

Vandersluis, R. and Savulescu, J., (2024), 'The selective deployment of AI in healthcare: An ethical algorithm for algorithms', Bioethics, Vol: 38(5): 391-400 [PMC7616300]

2023

Barry, A., Prentice, T. and Wilkinson, D., (2023), 'End of Life Care over Four Decades in a Quaternary Neonatal Intensive Care Unit', Journal of Paediatrics and Child Health, Vol: 59(2): 341-345 [PMC10107744]

Brown, R. and de Barra, M., (2023), 'A taxonomy of non-honesty in public health communication', Public Health Ethics, Vol: 16(1): 86-101 [PMC10161520]

Davies, B., (2023), 'Healthcare priorities: The ‘young’ and the ‘old’', Cambridge Quarterly of Health Care Ethics, Vol: 32 (2): 174-185 [PMC10425921]

Davies, B., (2023), 'Medical need and health need', Clinical Ethics, Vol: 18(3): 287-291 [PMC10444630]

Drezga-Kleiminger, M., Demaree-Cotton, J., Koplin, J., Savulescu, J. and Wilkinson, D., (2023), 'Should AI allocate livers for transplant? Public attitudes and ethical considerations', BMC Medical Ethics, Vol: 24(1): 102 [PMC10683249]

Minerva, F. and Giubilini, A., (2023), 'Is AI the future of mental healthcare?', Topoi : an International Review of Philosophy, Vol: 42, pp 809–817  [PMC10230127]

Poogoda, S., Lynch, F., Stark, Z., Wilkinson, D., Savulescu, J., Vears, D. and Gyngell, C., (2023), 'Intensive Care Clinicians’ Perspectives on Ethical Challenges Raised by Rapid Genomic Testing for Critically Ill Infants', Children, Vol: 10(6)(6): 970 [PMC10297108]

Wilkinson, D., (2023), 'The harm principle, personal identity and identity-relative paternalism', Journal of Medical Ethics, Vol: 49(6): 393-402 [PMC10313974]

2022

Bowman-Smart, H., Gyngell, C., Mand, C., Amor, D., Delatycki, M. and Savulescu, J., (2023), 'Non-invasive prenatal testing for ‘non-medical’ traits: ensuring consistency in ethical decision-making', American Journal of Bioethics, Vol: 23(3): 3-20 [PMC7614328]

Brown, R., De Barra, M. and Earp, B. D., (2022), 'Broad Medical Uncertainty and the ethical obligation for openness', Synthese, Vol: 200(121) [PMC8994926]

Cameron, J., Savulescu, J. and Wilkinson, D., (2022), 'Raqeeb, Haastrup and Evans: Seeking Consistency through a Distributive Justice-Based Approach to Limitation of Treatment in the Context of Dispute', Journal of Law, Medicine and Ethics, Vol: 50(1): 169-180 [PMC7613734]

Chadwick, D., Page, E., Wilkinson, D. and Savulescu, J., (2022), VIEWPOINT: 'Implied consent for HIV testing in the United Kingdom: time for a new approach?', Lancet HIV, Vol: 9(JANUARY 01, 2022): E63-E66 [PMC7612157]

Chan, L., Borg, J., Conitzer V, Wilkinson, D., Savulescu, J., Zohny, H. and Sinnott-Armstrong, W., (2022), 'Which features of patients are morally relevant in ventilator triage? A survey of the UK public.', BMC Medical Ethics Vol: 23(1): article 33 [PMC8956145]

Crisp, R., (2022), Religious preferences in healthcare: A welfarist approach, Bioethics (Special Issue: Religious Pluralism in Healthcare), Vol: 37(1) pp.5-11

Koplin, J. J., Gyngell, C., Savulescu, J. and Vears, D. F., (2022), 'Moving from 'fully' to 'appropriately' informed consent in genomics: The PROMICE framework', Bioethics, Vol: 36(6): 655-665 [PMC9321597]

Wood, K., Di Stefano, L., Mactier, H., Bates, S. and Wilkinson, D., (2022), 'Individualised decision-making: interpretation of risk for extremely preterm infants, a survey of UK neonatal professionals', Arch Dis Child Fetal Neonatal, Vol: 1074(3): 281-288 [PMC9046748]

Zohny, H., Earp, B. and Savulescu, J., (2022), 'Enhancing Gender', Journal of Bioethical Inquiry Vol: 19(June): 225-237 [PMC9233637]

2021

Brown, R., Mahtani, K., Turk, A. and Tierney, S., (2021), 'Social Prescribing in National Health Service Primary Care: What Are the Ethical Considerations?', Milbank Quarterly, Vol: 99(3): 610-628 [PMC8452361]

Cameron, J., Savulescu, J. and Wilkinson, D., (2021), 'Is Withdrawing Treatment Really More Problematic than Withholding Treatment?', Journal of Medical Ethics, Vol: Vol: 47(11): 722-726 [PMC7295851]

Davies, B., (2021), ''Personal health surveillance': The use of mHealth in healthcare responsibilisation', Public Health Ethics, Vol: 14(3): 268–280 [PMC8661076]

Di Stefano, L., Wood, K., Mactier, H., Bates, S. and Wilkinson, D., (2021), 'Viability and thresholds for treatment of extremely preterm infants: survey of UK neonatal professionals', Archives of Disease in Childhood, Vol: 106(6): 596-602 [PMC8543207]

Feng-Gu, E., Everett, J. A. C., Brown, R., Maslen, H., Oakley, J. and Savulescu, J., (2021), 'Prospective intention-based lifestyle contracts: mHealth technology and responsibility in healthcare', Health Care Analysis, Vol: 29(3): 189-212 [PMC8321967]

Graham, M., Hallowell, N. and Savulescu, J., (2021), 'A Just Standard: The Ethical Management of Incidental Findings in Brain Imaging Research', The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics, Vol: 49(2): 269-281 [PMC8242825]

Porsdam Mann, S., Savulescu, J., Ravaud, P. and Benchoufi, M., (2021), 'Blockchain, consent and prosent for medical research', Journal of Medical Ethics, Vol: 47(4): 244-250 [PMC8053330]

Savulescu, J., Everett, J. A. C., Maslen, H., Bringedal, B., Nussberger, A. M. and Wilkinson, D., (2021), 'An empirical bioethical examination of Norwegian and British doctor’s views of responsibility and (de)prioritization in healthcare', Bioethics, Vol: 35(9 (Special Issue: Truthfulness and deception in dementia care)): 932-946 [PMC8581988]

Takla, A., Wilkinson, D. and Savulescu, J., (2021), 'A conscious choice: is it ethical to aim at unconsciousness at the end of life', Bioethics, Vol: 35(3): 284-291 [PMC8243249]

Wilkinson, D. and Zayegh, A., (2021), 'Valuing life and evaluating suffering in infants with life-limiting illness.', Theoretical Med Bioeth, Vol: 41: 179–196 [PMC7745707]

2020

Brick, C., Kahane, G., Wilkinson, D., Caviola, L. and Savulescu, J., (2020), 'Worth living or worth dying? The views of the general public about allowing disabled children to die', Journal of Medical Ethics, Vol: 46(1) [PMC6984061]. Link to PDF poster produced by Claudia Brick (BMedSc student) 'Defining the concept of a life not worth living in paediatric treatment limitation'.

Di Stefano, L., Mills, C., Watkins, A. and Wilkinson, D., (2020), 'Ectogestation ethics: the implications of artificially extending gestation for viability, newborn resuscitation and abortion', Bioethics, Vol: 34(4): 34: 371– 384 [PMC7216952]

Grimwade, O., Savulescu, J., Giubilini, A., Oakley, J., Osowicki, J., Pollard, A. and Nussberger, A., (2020). 'Payment in Challenge Studies: Ethics, Attitudes and a New Payment for Risk Model', Journal of Medical Ethics, Vol: 46(12): 815–826 [PMC7719900]

Hayden, D., Villanueva-Uy, M. E., Mendoza, M. K. and Wilkinson, D., (2020), 'Resuscitation of preterm infants in the Philippines: a national survey of resources and practice', Arch Dis Child Fetal Neonatal, Vol: 105(2): 209-214 [PMC7063403]. Link to PDF poster produced by Dean Hayden (BMedSc student) 'Resuscitation of Preterm Infants in Low and Middle-Income Countries: AN ETHICAL ANALYSIS'

Véliz, C., (2020), 'Not the doctor’s business: Privacy, personal responsibility, and data rights in medical settings', Bioethics, Vol: 34(7): 712-718 [PMC7587002]

Wilkinson, D., Binik, A. and Turnham, H., (2020), 'Minority report: can minor parents refuse treatment for their child?', Journal of Medical Ethics, Vol: 46(6): 355-359 [PMC7279200

Wilkinson, D., (2020), 'In defense of a conditional harm threshold test for paediatric decision-making'. in I. Goold, J. Herring and C. Auckland, (Eds.)   In Parental Rights, Best Interests and Significant Harm: Medical decision-making on behalf of children post Great Ormond St vs Gard. (Hart) pp. [NBK556970]

2019

Doolabh, K., Caviola, L., Savulescu, J., Selgelid, M. and Wilkinson, D., (2019), 'Is the non-identity problem relevant to public health and policy? An online survey', BMC Medical Ethics, Vol: 20(1): 46 [PMC6612186]. Link to PDF poster produced by Keyur Doolabh (BMedSc student) 'The ethics of Zika: Exploring the questions around the outbreak' which looks at the concept of the non-identity problem and public attitudes within the context of the Zika outbreak.

Gyngell, C., Newson, A. J., Wilkinson, D., Stark, Z. and Savulescu, J., (2019), 'Rapid Challenges: Ethics and Genomic Neonatal Intensive Care', Pediatrics, Vol: 243(S1 (1 January)) [PMC6379057]

Linney, M., Hain, R. D. W., Wilkinson, D., Fortune, P. M., Barclay, S., Larcher, L., Fitzgerald, J. and Arkell, E., (2019), 'Achieving consensus advice for paediatricians and other health professionals: on prevention, recognition and management of conflict in paediatric practice', Archives of Disease in Childhood, Vol: 104(5): 413-416 [PMC6557224]

Savulescu, J. and Wilkinson, D., (2019), 'Consequentialism and the Law in Medicine'. in in T. C. de Campos, J. Herring and A. M. Phillips., (Eds.) Philosophical Foundations of Medical Law, (OUP) [NBK550265]

Wilkinson, D., (2019), 'Withdrawal Aversion and the Equivalence Test', American Journal of Bioethics, Vol: 19(3): 21-28 [PMC6436546]

Wilkinson, D., Hayden, D. and Schnall, J., (2019), 'Newborns in crisis: an outline of neonatal ethical dilemmas in humanitarian medicine', Developing World Bioethics, Vol: 19(4): 196-205 [PMC6916396]

Wilkinson, D. and Savulescu, J., (2019), 'Current controversies and irresolvable disagreement: the case of Vincent Lambert and the role of ‘dissensus’', Journal of Medical Ethics, Vol: 45(10): 631-635 [PMC6855788]

Wilkinson, D., Villanueva-Uy, M.E., Hayden, D., McTavish, J. and PSNbM Consensus Working Group, (2019), 'Decision-making around resuscitation of extremely preterm infants in the Philippines: A consensus guideline', Journal of Paediatrics and Child Health, Vol: 55(9): 1023-1028 [PMC6771675]

2018

Wilkinson, D. and Savulescu, J., (Online 2018), 'Prioritisation and Parity. Which disabled newborn infants should be candidates for scarce life-saving treatment?'. in D. T. Wasserman and A. Cureton, (Eds.) Oxford Handbook of Philosophy and Disability. (Oxford University Press)

2017

Paris, J., Ahluwalia, J., Cummings, B., Moreland, M. and Wilkinson, D., (2017), 'The Charlie Gard Case:  British and American Approaches to Court Resolution of Disputes over Medical Decisions', Journal of Perinatology, Vol: 37(21): 1268–1271 [open access]

Pugh, J., Pugh, C. and Savulescu, J., (2017), 'Exercise prescription and the doctors duty of non-maleficence', British Journal of Sports Medicine, Vol: 51(21): 1555-1556. [free]

Savulescu J. (2017),  Is it in Charlie Gard’s best interest to die? Lancet 389: 1868–9

Savulescu, J. and Schuklenk, U., (2017), 'Doctors Have No Right to Refuse Medical Assistance in Dying, Abortion or Contraception', Bioethics, Vol: 31(3): 162–170

Wilkinson D., (2017) Medical Futility. The International Encyclopaedia of Ethics (Wiley) [PDF]

Wilkinson D. Beyond resources: denying parental requests for futile treatment Lancet 2017 389: 1866-7

Wilkinson D, Petrou S, Savulescu J, Rationing potentially inappropriate treatment in newborn intensive care in developed countries. Seminars in Fetal and Neonatal Medicine Volume 23, Issue 1, February 2018, Pages 52-58 (commissioned review) [pre-print PDF]

2016

Arora, C., Savulescu, J., Maslen, H., Selgelid, M. and Wilkinson, D., (2016), 'The Intensive Care Lifeboat: a survey of lay attitudes to rationing dilemmas in neonatal intensive care', BMC Medical Ethics, Vol: 17(1): 69. PMC. Link to PDF poster produced by Chavy Arora (BMedSc student) 'The Ethics of Resource Allocation in the Neonatal Intensive Care Unit: An Empirical Perspective'

Wilkinson, D., (2016), 'The grey zone in neonatal treatment decisions'. in R. McDougall, C. Delany and L. Gillam, (Eds.) When Doctors and Parents Disagree: Ethics, Paediatrics and the Zone of Parental Discretion. (Federation Press)

Wilkinson D, Truog R, Savulescu J. In favour of medical dissensus. Why we should agree to disagree about end of life decisions. Bioethics 2016 Feb;30(2):109-18. doi: 10.1111/bioe.12162

2015

Les Halpin, Julian Savulescu, Kevin Talbot, Martin Turner and Paul Talman. Access to medicines: empowering patients in the quest to improve treatment for lethal diseases. Journal of Medical Ethics. 2015

Larcher V, Craig F, Bhogal K, Wilkinson D, Brierley J on behalf of the Royal College of Paediatrics and Child Health. Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice. Arch Dis Child 2015 100(Suppl 2):s1–s26. doi:10.1136/archdischild-2014-306666

2014

McDougall RJ, Notini L Overriding parents’ medical decisions for their children: a systematic review of normative literature Journal of Medical Ethics 2014;40:448-452.

Nair T, Savulescu J, Everett J, et al, (2017), 'Settling for second best: when should doctors agree to parental demands for suboptimal medical treatment?', Journal of Medical Ethics, Vol: 43(12): 831-840 [PMC5827708]. Link to PDF poster produced by Tara Nair (BMedSc student) 'Settling for Second Best: When Should Doctors Agree to Parental Demands for Suboptimal Treatment?' 

Pre 2014

Savulescu, J., (2011), 'Should doctors feel more able to practise according to their personal values and beliefs? No.', Medical Journal of Australia, Vol: 196(1): 38.

Selgelid, M. J., McLean, A., Arinaminpathy, N. and Savulescu, J., (Eds.) (2011). 'Infectious Disease Ethics: Limiting Liberty in Contexts of Contagion', (Springer)

Thiagarajan, M., Savulescu, J., Skene, L. (2007). ‘Deciding about life support: A perspective on the ethical and legal framework in the United Kingdom and Australia’. Journal of Law and Medicine. 14: 583.

Savulescu, J. and Kahane, G. (2009). ‘Brain-Damage and the Moral Significance of Consciousness’. Journal of Medicine and Philosophy. 34(1): pp 6-26. doi:10.1093/jmp/jhn038

Savulescu J. (2002). ‘How do we choose which life to save? Equality of Access or a Fair Go?’. Current Paediatrics. 12(6):487-492 (December).

Wilkinson, D., Savulescu J., Knowing when to stop: futility in the intensive care unit. Curr Op Anesthesiol 2011 doi: 10.1097/ACO.0b013e328343c5af

Media

YouTube

The Practical Ethics Video Series makes the most important and complex debates in practical ethics accessible to a wide audience through brief interviews with high profile philosophers in Oxford.  Video interviews on this and other topics can be found on our YouTube channel.

2023

Online Debate on Conscientious Objection in Healthcare — Alberto Giubilini and Xavier Symons. Recorded at the Society for Christian Bioethicists 2023 Annual Conference (Online), 21 October 2023

Audio

Wilkinson, D., (2020), Medicine Voice of Islam Radio. From the origination of medicine in ancient Egypt around 2600 BC to the development of vaccines against novel diseases in 2020, medicine has come a long way. How much has changed and what is still missing in the discipline of medicine? Prof Wilkinson discusses decision-making in treatment, medical ethics, ethical training for medical professionals, resource allocation during the COVID-19 pandemic and paediatric organ transplantation [starts at 9:08] (14 December 2020).

Wilkinson, D., (2018), 'Sleep softly: Ethics, Schubert and the value of dying well'.  An inter-disciplinary collaboration on music, mortality and ethics including a performance of Schubert’s String Quartet Number 14 (second movement). Jesus College, Oxford (23 May).

Paris, J., (2017), 'Murder or a Legitimate Medical Procedure: the Withdrawal of Artificial Nutrition & Fluids from a Patient in a Persistent Vegetative Condition'.  St Cross Special Ethics Seminar. St Cross College, Oxford (18 May).

Medical Ethics Symposium: Rationing Responsibly in an Age of Austerity (20 June 2018):

Blogs

Practical Ethics in the News BlogCompromising On the Right Not to Know? Published June 28, 2021 | By Ben Davies

Practical Ethics in the News BlogUrgency, Delayed Decision-making and Ethics in the Court of Protection, Published June 24, 2021 | By Dominic Wilkinson

Practical Ethics in the News BlogGeneral Anaesthesia in End of Life Care – GAEL. Published April 21, 2021 | By Dominic Wilkinson

Practical Ethics in the News BlogEnd-of-Life Care: People Should Have the Option of General Anaesthesia as They Die. Published April 27, 2021 | By Dominic Wilkinson and Julian Savulescu, cross-posted in The Conversation, read the original article here.

Practical Ethics in the News Blog: Press Release: New Tavistock Legal Ruling on Puberty Blockers, Published March 26, 2021 | By Dominic Wilkinson

Brown, R., (2017), 'Organ Donation: Presumed Consent and Focusing on What Matters', Practical Ethics in the News Blog (25 September). 

Wilkinson, D., (2015), 'Terminally ill teenager defies predictions but that doesn’t mean doctors were wrong', The Conversation (June).

Sheehan, M., (2008), 'Doctors or Resource Allocators?', Contribution to Practical Ethics Blog (28 August).

Online/Print

The Telegraph: 'What is driving the looming measles epidemic? With MMR vaccination uptake at a 10-year low, the disease has made a comeback', quotes Dominic Wilkinson | by John Naish (7 February 2022)

BBC News: 'Three ethical issues around pig heart transplants', quotes Julian Savulescu and Katrien Devolder | by Jack Hunter (11 January 2022)

Hastings Bioethics Forum, Human Reproduction: Sheetal Soni and Julian Savulescu (20 October 2021)
Polygenic Embryo Screening: Ethical and Legal Considerations

BMJ News: quotes Dominic Wilkinson (Published 06 August 2021)
Parents of brain damaged girl enlist US and Israeli politicians to maintain treatment as legal options run out
BMJ 2021;374:n1969

The Guardian: Dominic Wilkinson (3 August 2021)
Brain-damaged toddler gets visa to go to US for medical assessment
Alta Fixsler subject of legal battle between ultra-Orthodox Jewish parents and NHS trust

The Guardian: Dominic Wilkinson (4 August 2021)
Alta Fixsler: European court says UK hospital can withdraw life support
ECHR rejects appeal from parents of girl who suffered severe brain injury at birth

BBC Future: Wilkinson, D., (24 July 2019)
'Is it right to use Nazi research if it can save lives?', Written by Frank Swain for BBC Future, this article extensively quotes Dominic Wilkinson.

Medscape: Palacios-González, C., (7 June 2019)
'¿Cuáles son los resguardos antes de tomar fotografías de los pacientes? (What are the safeguards before taking pictures of the patients?)'

MIT Technology Review: Palacios-González, C., (22 January 2019)
Dr Palacios-González's blog post 'A third MRT-baby is on its way' was picked up and cited in MIT Technology Review online article 'Another use of an egg-swapping IVF technique has just been reported in Europe',

Brown, R., (2017), 'Interview on organ donation and consent', BBC 5 Live Phil Williams (18 October).

Brown, R., (2017), 'Interview on organ donation and consent', BBC Wales Jason Mohammad show (19 October). 

Brown, R., (2017), 'Hundreds of families block organ donation', BBC (online article) (19 October). 

Video interview related to The Charlie Gard Case (Dominic Wilkinson, Practical Ethics 14/7/17)

Television related to The Charlie Gard Case (Julian Savulescu, ABC TV Australia 13/7/17)

The Moral related to The Charlie Gard Case (Dominic Wilkinson, BBC radio, 12/7/17)

Video interview related to The Charlie Gard Case (Julian Savulescu, Practical Ethics 10/7/17)

Wilkinson, D., (2016), Interview on HFEA decision to approve 'three-person baby’ mitochondrial transfer in UK, Al Jazeera English news channel (15 December 2016).

Savulescu, J., (2008), 'Abortion Bill's Rights 'Breach'', The Age (October 6).

Wilkinson, D., (2008), 'Healthy case for letting doctors judge teens' best interests', The Age (November 15).

Savulescu, J., (2007), 'Doctors must go beyond treating the sick, ethicist says', USA (27 August).

The Charlie Gard Case

The case of Charlie Gard has reached its sad conclusion. However, it continues to attract intense public attention. It raises a number of challenging and important ethical questions.

The role of Practical Ethics in cases like this is to help clarify the key concepts, identify central ethical questions, separate them from questions of scientific fact and subject arguments to critical scrutiny. We have disagreed about the right course of action for Charlie Gard, but agree on the role of ethical analysis and the importance of robust and informed debate. Ethics is not about personal opinion – but about argument, reasons, and rational reflection.

We have collected together below some of the materials on the Charlie Gard case that we and others have written as well as some relevant resources from our earlier work. We will update this page as more material becomes available. (*Updated 4/8/17)

Legal material on the case

Summary of Case

Blogs/comments

Papers on the Charlie Gard Case

Interviews

Relevant background material

Other ethics commentators

The Alfie Evans Case

In the light of recent media attention, Professor Dominic Wilkinson, OUCs Director of Medical Ethics has gathered together some of the material relating to the ethics of this case

Previous blog posts

Groundhog Day and Legal Appeals. (What if Alfie Were a Texan?)

Harm, Interests and Medical Treatment. Where the Supreme Court Got it Wrong…

Where There is Life, There is Not Always Hope. Ethics, Futility and the Alfie Evans Case

Medical treatment disputes and the international second opinion

Other resources

BBC Website Factcheck article “Alfie Evans: When are parents denied the final say?”

The Independent “Alfie Evans: The significance of terminally ill boy being able to breathe on his own”

Wilkinson, D., (2018), 'What we can learn from the heartbreaking Alfie Evans case — and what we can’t', Interview Vox media (27 April).

Wilkinson, D., (2018), 'British toddler Alfie Evans not allowed to leave country, UK court says', Quoted in CNN online piece (26 April).

Wilkinson, D., (2018), 'How do medics reach decisions in cases like that of Alfie Evans?', Quoted in Express and Star (25 April).

Wilkinson, D., (2018), 'Fight Over Alfie Evans, a Brain-Damaged Baby, Divides U.K.', Interview in New York Times (26 April).

Wilkinson, D., (2018), 'Alfie Evans: No new treatments on offer despite offers of help abroad', Quoted in piece in The Times (25 April).

FAQs

Below are responses to some of the questions commonly asked in relation to Alfie’s case:

The doctors don’t know what is causing Alfie’s illness. Why do they want to stop life support?

The exact cause of Alfie’s condition is not known – there is no diagnosis, which can make it hard to know what the future holds. However, in Alfie’s case, the future, sadly, appears clear. Multiple medical specialists gave evidence in the case. Brain scans have shown severe deterioration over time. The judge in the original court hearing described scans showing that large areas of the brain have been “wiped out”. Alfie has been totally dependent on life support. He has profound neurological damage. There appears to be no prospect of recovery, and no specialists in this country, or overseas have identified any tests or treatment that have a real chance of making him better.

It is devastating news for any parent to hear that their child is gravely ill.  It is especially difficult in situations when doctors cannot be sure of the exact cause of the child’s illness. However, sadly, despite all of our advances in genetics, it is still sometimes impossible to make an exact diagnosis in a seriously ill child.

Where there is life, there is hope? Shouldn’t Alfie’s parents be allowed to hold on to hope?

It is very understandable for parents to want to hold on to hope, to exhaust every possibility that might make their child better. However, sometimes the sad fact is that medicine cannot cure, or improve a child’s condition. Sometimes the only hope that remains is that a child’s suffering is not prolonged.

Overseas doctors have offered treatment for Alfie, why shouldn’t his parents be allowed to take him overseas?

In a previous blog post, I discussed some of the reasons why evidence from overseas experts sometimes is relevant, but sometimes is not relevant to cases of disputed treatment.

In another recent case, the judge noted “There is a world of difference between a foreign expert who may have relevant medical or scientific expertise … and whose evidence may … be necessary to resolve the proceedings justly, and a foreign expert who simply takes the view that the medical, moral or ethical approach to these issues in this jurisdiction differs from that in their own jurisdiction or their own practice, and that the approach in their jurisdiction or their own practice is preferable.”

In Alfie’s case, none of the foreign experts have offered any new treatment, or any new outlook for Alfie. The Italian specialists have apparently indicated that they believe that his care should be palliative.

However, some of the overseas experts appear to have different ethical views about how best to care for a child who is dying. They appear to believe that life should be prolonged at costs or that parents are always right when it comes to decisions about medical treatment for a child.

That is not the ethical framework that doctors and the courts use in this country. Medical treatment is often helpful for a child. Parents views are extremely important for decisions about treatment for children. However, sometimes the sad fact is that medicines or machines are not helping a child, and, in fact, are doing more harm than good. Sometimes the sad fact is that parents do not know what is best for their child. They are led by their grief and their sadness, their understandable desire to hold on to their child, to request treatment that will not and cannot help.

In that circumstance, it is wrong to continue to provide those treatments, and doctors and the courts in this country have felt that they should not be provided, even if parents would wish them to be.

Alfie is breathing by himself, does that mean doctors were wrong?

In the last few hours, news reports have indicated that life support has been withdrawn from Alfie, and that he is breathing by himself.

That does not mean that doctors were wrong, and it does not mean that breathing support should be restarted.

The reason for stopping the breathing machines is simply that his serious condition is not treatable, and will not improve. He has deteriorated over the many months that he has been on life support. The breathing tubes and machinery used to keep Alfie alive can cause discomfort and even pain to children. Given the nature of Alfie’s condition, the doctors have wanted to provide him with palliative care, focused on his comfort, and focused on making his remaining time as good as possible.

Whenever I provide palliative care to children, I talk to families about uncertainty. When we stop breathing support for a child, sometimes the child will slip away very quickly. Sometimes, they will be with us for minutes or hours, or even days. Sometimes, when the breathing machine is removed, it becomes clear that actually the child didn’t need the machine, and they remain with us for much longer. When that happens, it is not something to fear, or to regret, but an opportunity to embrace – to spend more time with a child, without the machinery, wires and medical interventions in the way.

Providing palliative care is not euthanasia. It is about providing “intensive caring” rather than intensive medical care. It does not end the child’s life. Rather, it supports the child, and the child’s family, for as long or as short as they remain with us.

Updated 26 April 2018.

image of a statue of a family members at deathbed

Press Releases

Medical and ethical experts say ‘make general anaesthesia more widely available for dying patients’ (21 April 2021)

General anaesthesia is widely used for surgery and diagnostic interventions, to ensure the patient is completely unconscious during these procedures. However, in a paper published in Anaesthesia (a journal of the Association of Anaesthetists) ethics and anaesthesia experts from the University of Oxford say that general anaesthesia should be more widely available for patients at the end of their lives.
Press Release: Medical and ethical experts say ‘make general anaesthesia more widely available for dying patients

Majority of UK public want choice at the end of life – survey (24 March 2021)

The latest research from Oxford University’s Uehiro Centre for Practical Ethics breaks new ground. It finds strong support for access to deep sedation in dying patients, with 88% of respondents saying they would want the option of a general anaesthetic if they were dying, while 79% would want the option of euthanasia.

Media

MIT Technology Review: End-of-life decisions are difficult and distressing. Could AI help? (quotes Brian Earp) | By Jessica Hamzelou, August 1, 2024

Practical Ethics in the News Blog: General Anaesthesia in End of Life Care – GAEL. Published April 21, 2021 | By Dominic Wilkinson

Practical Ethics in the News Blog: End-of-Life Care: People Should Have the Option of General Anaesthesia as They Die. Published April 27, 2021 | By Dominic Wilkinson and Julian Savulescu

For a collection of older Practical Ethics in the News blogs on this topic, go to our blog website here.

Podcast: 'Sleep softly: Ethics, Schubert and the value of dying well'.  An inter-disciplinary collaboration on music, mortality and ethics including a performance of Schubert’s String Quartet Number 14 (second movement). Dominic Wilkinson (23 May 2018).

LBC Radio (with Nick Ferrari): Dominic Wilkinson discusses whether general anaesthesia should be offered to patients at end-of-life (28 April 2021) [02:35:30 on the clock]

Open Access Publications

Barry, A., Prentice, T. and Wilkinson, D., (2023), 'End of Life Care over Four Decades in a Quaternary Neonatal Intensive Care Unit', Journal of Paediatrics and Child Health, Vol: 59(2): 341-345 [PMC10107744]

Savulescu, J., Gilbertson, L., Oakley, J. and Wilkinson, D., (2022), 'Expanded terminal sedation in end-of-life care', Journal of Medical Ethics, Vol: 49(4): 252-260 [PMC10086483]

Takla, A., Wilkinson, D., Pandit, J. and Savulescu, J., (2021), 'General anaesthesia in end-of-life care: extending the indications for anaesthesia beyond surgery', Anaesthesia, Vol: 76(10): 1308-1315 [PMC8581983]

Summary: In this article, we describe an extension of general anaesthesia – beyond facilitating surgery – to the relief of suffering during dying. Some refractory symptoms at the end of life (pain, delirium, distress, dyspnoea) might be managed by analgesia, but in high doses, adverse effects (e.g. respiratory depression) can hasten death. Sedation may be needed for agitation or distress and can be administered as continuous deep sedation (also referred to as terminal or palliative sedation) generally using benzodiazepines. However, for some patients these interventions are not enough, and others may express a clear desire to be completely unconscious as they die. We summarise the historical background of an established practice that we refer to as ‘general anaesthesia in end‐of‐life care’. We discuss its contexts and some ethical and legal issues that it raises, arguing that these are largely similar issues to those already raised by continuous deep sedation. To be a valid option, general anaesthesia in end‐of‐life care will require a clear multidisciplinary framework and consensus practice guidelines. We see these as an impending development for which the specialty should prepare. General anaesthesia in end‐of‐life care raises an important debate about the possible role of anaesthesia in the relief of suffering beyond the context of surgical/diagnostic interventions.

Takla, A., Wilkinson, D. and Savulescu, J., (2021), 'A conscious choice: is it ethical to aim at unconsciousness at the end of life', Bioethics, Vol: 35(3): 284-291 [PMC8243249]

Abstract: One of the most commonly referenced ethical principles when it comes to the management of dying patients is the doctrine of double effect (DDE). The DDE affirms that it is acceptable to cause side effects (e.g. respiratory depression) as a consequence of symptom‐focused treatment. Much discussion of the ethics of end of life care focuses on the question of whether actions (or omissions) would hasten (or cause) death, and whether that is permissible. However, there is a separate question about the permissibility of hastening or causing unconsciousness in dying patients. Some authors have argued that the DDE would not permit end of life care that directly aims to render the patient unconscious. The claim is that consciousness is an objective human good and therefore doctors should not intentionally (and permanently) suppress it. Three types of end of life care (EOLC) practices will be explored in this article. The first is symptom‐based management (e.g. analgesia); the second is proportional terminal sedation as a means of relieving suffering (also referred to as palliative sedation or continuous deep sedation); and finally, deliberate and rapid sedation to unconsciousness until death (a practice we call terminal anaesthesia in this paper). After examining the common arguments for the various types of symptom‐based management and sedation, we apply the DDE to the latter two types of EOLC practices. We argue that aiming at unconsciousness, contrary to some claims, can be morally good or at least morally neutral in some dying patients.

Takla, A., Savulescu, J., Kappes, A. and Wilkinson, D., (2021), 'British laypeople’s attitudes towards gradual sedation, sedation to unconsciousness and euthanasia at the end of life', PLoS ONE, Vol: 16((3):e0247193) [PMC7997648]

Abstract: Many patients at the end of life require analgesia to relieve pain. Additionally, up to 1/5 of patients in the UK receive sedation for refractory symptoms at the end of life. The use of sedation in end-of-life care (EOLC) remains controversial. While gradual sedation to alleviate intractable suffering is generally accepted, there is more opposition towards deliberate and rapid sedation to unconsciousness (so-called “terminal anaesthesia”, TA). However, the general public’s views about sedation in EOLC are not known. We sought to investigate the general public’s views to inform policy and practice in the UK.

Wilkinson, D., (2021), 'Sleep softly. Schubert, ethics and the value of dying well', Journal of Medical Ethics, Vol: 47(4) [PMC8053338]

Abstract: Ethical discussions about medical treatment for seriously ill babies or children often focus on the ‘value of life’ or on ‘quality of life’ and what that might mean. In this paper, I look at the other side of the coin—on the value of death, and on the quality of dying. In particular, I examine whether there is such a thing as a good way to die, for an infant or an adult, and what that means for medical care. To do that, I call on philosophy and on personal experience. However, I will also make reference to art, poetry and music. That is partly because the topic of mortality has long been reflected on by artists as well as philosophers and ethicists. It is also because, as we will see, there may be some useful parallels to draw.