Chapter 1 - Introduction
Chapter 2 - Confidentiality and access to information
Paul is a general practitioner working from a private practice in Harley Street. Amongst his patients are many other medical doctors and one of these, David (a surgeon at a London NHS hospital) has come to see him about the results of a blood test that was done recently. It transpires that David is HIV positive and Paul informs him of this finding. During the ensuing discussion it emerges that David has no intention of telling his HIV negative partner about the diagnosis and is likely to continue to have unprotected sex. He also rejects Paul's suggestion that David should inform his NHS trust of the diagnosis to ensure that either appropriate surgical protocols can be in place or that he might be transferred to a role in the hospital where his infection status does not pose an elevated risk to others.
Paul is enraged by both the callousness with which David is acting towards his partner and the unprofessional attitude he is displaying towards his employer and his patients. He considers contacting (a) David's partner, (b) his line manager at the NHS trust and maybe even (c) the local newspaper to prevent harm to others. He speaks to Marc and Simon who together often advise NHS hospitals in difficult scenarios. Marc is a solicitor and medical lawyer at the nearby hospital’s preferred firm, Rowlett McGuinness LLP, and Simon is an ethicist who coordinates a clinical ethics committee. Paul asks them for advice on how to proceed.
Marc starts by telling Paul that, as the case of Egdell(see p. 19) makes clear, he owes a professional duty of confidence to David and must thus justify disclosure. Simon adds that the special relationship of trust between a doctor and a patient also justifies an initial assumption that all information will be kept in strict confidence: David should be able to autonomously reach a decision about how his information is handled. In this case, therefore, because there is no statutory duty to disclose the information without explicit consent from David, Paul will have to show that it is in the public interest to do so. Simon agrees that exceptions to confidentiality must be possible in order to prevent harm to others in certain circumstances.
So Paul will have to demonstrate that there is a public interest in relation to each of the three disclosures that he wishes to make: with respect to David’s partner, Marc advises that the GMC guidance (p. 20) explicitly states that such a disclosure is permissible, and that the courts have been very reluctant to sanction doctors who follow guidelines. Simon also thinks that this is a situation where Paul will need to balance his obligation of confidence towards David against the possiblity of preventing serious harm to an innocent third party. Equally, David's line manager at the NHS Trust will have an interest in receiving the information so that the risk to patients may be minimised. However, both Marc and Simon agree that it is difficult to justifiy that it is in the public interest to inform the local newspaper - particularly since any subsequent story would be read widely – as held by the court in X v Y (p. 18) Marc also notes that David might take legal action via Article 8 of the European Convention on Human Rights and Fundamental Freedoms that provides a right to privacy. He says that the test for justifying disclosure should such a challenge be made – necessity and proportionality – are conceptually very similar to the test in English law in X v Y and Egdell, and the court would probably reach the same answer, and for the same reasons, with respect to each of the three disclosures. Marc therefore advises Paul that while he may be justified in disclosing David’s HIV+ status to David’s partner and the line manager at the NHS Trust, David would most likely be able to sue for damages – through both breach of privacy and a breach of confidence – if disclosure were made to the local newspaper. Simon feels that whilst it is possible to construct an ethical argument that the information ought to be kept confidential (for example in order to preserve public trust in the medical profession), this view would attract few supporters in the context of serious harm being done to identified individuals or a whole patient population. It is rather preferable here to prevent serious harm to others whilst diminishing David's ability to decide how information about him his handled.
- D. Beyleveld and E. Histed, ‘Betrayal of Confidence in the Court of Appeal’ (2000) 4 Medical Law International 277 http://mli.sagepub.com/content/4/3-4/277.full.pdf
- P. Case, ‘Confidence Matters: The Rise and Fall of Informational Autonomy in Medical Law’ (2003) 11(2) Medical Law Review 208 http://medlaw.oxfordjournals.org/content/11/2/208.full.pdf+html
- R. Gilbar, ‘Medical Confidentiality within the Family: The Doctor’s Duty Reconsidered’ (2004) 18(2) International Journal of Law, Policy and the Family 195 http://lawfam.oxfordjournals.org/content/18/2/195.full.pdf+html
- M. Taylor, ‘Health Research, Data Protection and the Public Interest in Notification’ (2011) 19(2) Medical Law Review 267 http://medlaw.oxfordjournals.org/content/19/2/267.full.pdf+html
- G. Niveau, S. Burkhardt and S. Chiesa, ‘Medical Confidentiality and the Competent Patient’ (2013) Journal of Medical Ethics, doi: 10.1136/medethics-2012-100947 http://jme.bmj.com/content/39/11/686.long
- M. Rothstein, ‘Is Deidentification Sufficient to Protect Health Privacy in Research?’ (2009) 10(9) American Journal of Bioethics 3 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3032399/
- A. Slowther, ‘Sharing Information in Health Care: The Nature and Limits of Confidentiality’ (2006) 1(2) Clinical Ethics 82 http://cet.sagepub.com/content/1/2/82.full.pdf
Chapter 3 - Errors and fault
Amy is in labour, and there are complications with her pregnancy. The treatment team have two options: perform a caesarean section or try to proceed with a vaginal birth and use forceps to help deliver the child if necessary. The treatment team are minded to try a vaginal delivery, but are concerned that there is a risk that the use of forceps might injure the baby and ask Marc, a solicitor at the firm used by the hospital (Rowlett McGuinness LLP) and Simon, the hospital ethicist, for their opinions. They tell them that the risk of harm to the baby is greater with the forceps delivery than with a caesarean, but that despite this there are some doctors who would opt for this method as a vaginal birth is seen as better by some, particularly the consultant in charge of the treatment team who is said to have rather traditional views on childbirth.
Marc tells the treatment team that, should the baby be injured and suffer brain damage as a result of too much force being used with the forceps (such as occurred in Whitehouse v Jordan), then in the event of litigation claiming negligence a court would use the Bolitho (see p. 52) test to assess the reasonableness of the decision. It would ask, first, whether there was a body of medical opinion that might have opted for trying a vaginal delivery and, if there was, whether the evidence from that body was able to withstand logical analysis. He makes it clear that the ‘lack of logical analysis’ must go beyond merely being the non-preferred option of the court, but must be essentially illogical. That said, the existence of a less risky option in the form of a caesarean would certainly be something that a court would have to take seriously – and it would not matter that the consultant in charge who preferred vaginal delivery was eminent. Marc advises that the caesarean would be the safer option at this stage. Simon queries whether Amy has been involved in the decision-making process. He feels that if the options, risks and benefits are put to her, she would be best-placed to take a decision because, after all, this is about her and her baby. In the event that Amy can no longer be involved in the process, the treatment team should opt for the manifestly less risky procedure (the caesarean section) over the risky procedure (the forceps) unless Amy has previously made it known that she also has a strong preference that a traditional vaginal birth take place. In any case, it certainly does not matter whether the consultant has traditional views or not, as the views of the patient are decisive in making treatment decisions here.
- M. Brazier and J. Miola, ‘Bye-Bye Bolam: A Medical Litigation Revolution’ (2000) 8(1) Medical Law Review 85 http://medlaw.oxfordjournals.org/content/8/1/85.full.pdf+html
- S. Green, ‘Coherence of Medical Negligence Cases: A Case of Doctors and Purses’ (2006) 14(1) Medical Law Review 1 http://medlaw.oxfordjournals.org/content/14/1/1.full.pdf+html
- A. Merry and A. McCall Smith, Errors, Medicine and the Law (Cambridge University Press, 2001) http://books.google.de/books?id=kgESTBANJLIC
- R. Mulheron, ‘Trumping Bolam: A Critical Legal Analysis of Bolitho’s “Gloss”’ (2010) 69 Cambridge Law Journal 609 http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=7921933
- K. Williams, ‘Litigation against English NHS Ambulance Services and the Rule in Kent v Griffiths’ (2007) 15(2) Medical Law Review 153 http://medlaw.oxfordjournals.org/content/15/2/153.full.pdf+html
- Lord Woolf, ‘Are the Courts Excessively Deferential to the Medical Profession?’ (2001) 9(1) Medical Law Review 1 http://medlaw.oxfordjournals.org/content/9/1/1.full.pdf+html
- S. Buetow and G. Elwyn, ‘Are Patients Morally Responsible for Their Errors?’ (2006) 31 Journal of Medical Ethics 260 http://jme.bmj.com/content/32/5/260.full.pdf+html
- J. Dute, M. Faure and Helmut Koziol (eds.), No-Fault Compensation in the Health Care Sector (Vienna/ New York: Springer, 2004) http://books.google.de/books?id=iPVz4KP8HccC
- A. Merry, B. Runciman and M. Walton, Safety and Ethics in Healthcare: A Guide to Getting It Right (Aldershot: Ashgate, 2007) http://books.google.de/books?id=eWbIVl2cX7cC
- J. Saunders, ‘Good People Do Bad Things’ (2013) Journal of Medical Ethics, doi: 10.1136/medethics-2013-101460 http://jme.bmj.com/content/early/2013/08/26/medethics-2013-101460.full.pdf+html
- J. Tingle and P. Bark (eds.), Patient Safety, Law Policy and Practice (London: Routledge, 2011) http://books.google.de/books?id=Gq40n4AFhmYC
Chapter 4 - Consent and autonomy
Beth suffers pain in her back and, working in an office, sits down all day, which made it worse. She is offered an operation that will relieve the pain, but carries with it a 1-2 per cent chance of nerve damage, even if performed properly. This nerve damage may lead to paralysis. The treatment team have not yet explained the risks to her as part of the consent process, and wish to know whether they should mention this risk. On the one hand, the risk is small and they are worried that Beth will panic and refuse consent to the operation unreasonably. The treatment team suggest that many doctors they know would not warn of the risk. On the other hand, they find it difficult to justify not informing a patient of all risks inherent in what is, after all, an elective procedure.
The treatment team consult their solicitor, Marc, who informs them that this case is eerily similar in fact to both Sidaway v Bethlem Royal Hospital Governors (p. 78) and Chester v Afshar (p. 86) (what are the chances of these facts coming up twice, nevermind three times!). She tells them that, while in Sidaway the risk was considered too small to have to be told to patients without prompting, in Chester, the court found that the risk was material. The lawyer's view is that, since the law increasingly prioritises autonomy, it would be difficult to justify not informing Beth of this risk.
Furthermore, it does not matter that other doctors might not warn of this risk - recent cases show that a risk is material if the reasonable patient would wish to be told of it, so what other doctors would do is not determinative proof of reasonable conduct. Indeed, Simon agrees with Marc that not to tell Beth of the risk because they are worried that she might refuse the operation is not only disrespectful of her autonomy, but also displaying a level of paternalism that the law no longer condones, and that medical ethics never supported. The tenor of the recent cases favour telling her of the risk.
- Department for Constitutional Affairs, Mental Capacity Act Code of Practice (Crown Copyright, 2007), http://www.dca.gov.uk/legal-policy/mental-capacity/mca-cp.pdf
- M. Donnelly, ‘Capacity Assessment under the Mental Capacity Act 2005: Delivering on the Functional Approach’ (2009) 29(3) Legal Studies 464 http://onlinelibrary.wiley.com/doi/10.1111/j.1748-121X.2009.00133.x/abstract
- M. Gunn, ‘The Meaning of Incapacity’ (1994) 2 Medical Law Review 8 http://medlaw.oxfordjournals.org/content/2/1/8.full.pdf
- M. Jones, ‘Informed Consent and Other Fairy Stories’ (1999) 7 Medical Law Review 103 http://medlaw.oxfordjournals.org/content/7/2/103.full.pdf
- A. Maclean, ‘The Doctrine of Informed Consent: Does It Exist and Has It Crossed the Atlantic?’ (2004) 24(3) Legal Studies 386 http://onlinelibrary.wiley.com/doi/10.1111/j.1748-121X.2004.tb00255.x/abstract
- A. Maclean, ‘Autonomy, Consent and Persuasion’ (2006) 13(4) European Journal of Health Law 321 http://www.ncbi.nlm.nih.gov/pubmed/17302359
- J. Miola, ‘On the Materiality of Risk, Paper Tigers and Panaceas’ (2009) 17 Medical Law Review 76 http://medlaw.oxfordjournals.org/content/17/1/76.full.pdf+html
- C. Foster, Choosing Life, Choosing Death: The Tyranny of Autonomy in Medical Ethics and Law (Oxford: Hart, 2009) http://books.google.de/books?id=H1ONPgAACAAJ
- O. O’Neill, Autonomy and Trust in Bioethics (Cambridge University Press, 2002) http://books.google.de/books?id=F_2z0qJgrUoC
- G. Stirrat and R. Gill, ‘Autonomy in Medical Ethics after O’Neill’ (2005) 31 Journal of Medical Ethics 127 http://jme.bmj.com/content/31/3/127.full.pdf+html
Chapter 5 - Incapable adults and children
Two new patients present at the Early Pregnancy and Gynaecology Unit. Kayla is 17 years old and 16 weeks pregnant, Roberta is 19 years old and 20 weeks pregnant. Kayla is still at school and currently studying for her A-Levels. Roberta lives in a care home and has a learning disability. She is estimated to have a mental age of around nine years of age. She is in a long-term relationship with a 22 year old partner who also has a similar learning disability.
Both patients are accompanied by their respective parents, who request that an abortion be carried out. In Roberta's case, it is further requested that she be sterilised in the same procedure in order to prevent another pregnancy. Whilst Roberta expresses no dissent or assent to the suggested termination and sterilisation, Kayla refuses and repeatedly expresses the wish "to keep the baby". The staff nurse decides to ask the administrator to get Marc, from Rowlett McGuinness LLP, and a member of the hospital's clinical ethics committee, Simon, to come and advise the parties on how to proceed.
Marc advises that whilst each patient must be treated separately, a pregnancy termination on social grounds is entirely possible under section 1(1)(a) of the Abortion Act 1967 (p. 190). What makes these two cases special is the fact that the termination is not requested by the patients themselves, but by their respective parents.
With respect to Roberta, Marc notes that while the courts used to be sympathetic to requests to sterilize adults with learning disabilities, they have for some time now come to the conclusion that improved supervision rather than sterilisation may be a more appropriate way of proceeding. This is particularly the case if Roberta lacks the capacity to consent to sexual intercourse itself – in this case there will be a duty of care imposed on her carers not to allow what would amount to sexual abuse. Moreover, the Mental Capacity Act 2005 (p. 110) makes the possibility of such sterilizations even more rare. A sterilisation would only be lawful if it were in Roberta’s best interests, and Marc states that both the Act and Code of Practice (p. 93) make clear it is the least restrictive method of achieving the treatment’s aim that will be in a patient’s best interests. He concludes, therefore, that it is unlikely that such a sterilisation would be authorised by a court. Simon says that he agrees in principle with this assessment but notes that the views of Roberta (as far as they can be determined) play an important role here. He suggests that whilst Marc's approach of ensuring that no more is done to Roberta than is proportionately necessary to achieve the aim of protecting her, the treatment team should also bear in mind that it may be in Roberta's interests to enable her to be in a loving long-term relationship. Where this can be achieved by way of supervision, without interfering with Roberta's sense of privacy, a non-invasive or irreversible intervention would be a preferable option. Where this is not possible, those involved should seek to ensure that, in the absence of the possibility of abuse, Roberta is put into a situation where she can give effect to her preferences in the best possible way. This may well include the possibility of a sterilisation and Roberta may be in a position to express a preference if the details are explained to her. Under no circumstances should the procedure be done, however, if the aim is merely to make Roberto more 'manageable' for her carers.
Kayla’s situation has been considered before in hypothetical terms, with Lord Donaldson in Re W (p. 126) noting that while the forced termination of a 17 year old's pregnancy might be legally possible, medical ethics would prevent this from occurring. There is nothing to say that this is the case, and Marc notes that if a doctor could be found who would be prepared to undertake the procedure despite Kayla’s objection the procedure would be lawful in technical terms. Simon agrees and also finds it difficult to say why Lord Donaldson thought that 'medical ethics' would in some way reliably intervene here. Nevertheless, Marc also advises that the general move of the law towards patient autonomy, and the fact that Re W does not follow the philosophy behind Gillick(p. 124), would leave it open to a court to state that the procedure would not be lawful after all. Therefore he recommends that even if someone who was willing to perform the procedure could be found, it might well be in a case such as this that the courts would choose not to follow established law. Indeed, he feels that if the courts did not do so in this case it is difficult to imagine a situation in which they would do so. Marc therefore advises the treatment team to take into account Kayla's views. Her objection should be treated as a dissent which negates possibility of others to consent on her behalf to this very invasive and traumatising intervention. Simon agrees fully and observes that medical ethics would be useful only to assist the treatment term in finding the right way in cases of uncertainty or the conflict of equal interests, which is not the case here. Medical ethics does not labour under the constraints of having to identify an age limit which determines when an individual can make decisions about herself - Kayla expresses her preferences lucidly and it would be catastrophically disrespectful of her autonomy to force her to undergo an abortion.
- D. Archard, ‘Children, Adults, Best Interests and Rights’ (2013) 13(1) Medical Law International 55 http://mli.sagepub.com/content/13/1/55.abstract
- P. Bartlett, Blackstone’s Guide to the Mental Capacity Act 2005 (Oxford University Press, 2008) http://books.google.de/books?id=X7V9GgAACAAJ
- E. Cave, ‘The Maximisation of a Minor’s Capacity’ (2011) 23(4) Child and Family Law Quarterly 431 http://www.scie-socialcareonline.org.uk/maximisation-of-minors-capacity/r/a1CG0000000Gb7qMAC
- E. Cave and J. Wallbank, ‘Minors’ Capacity to Refuse Treatment: A Reply to Gilmore and Herring’ (2012) 20(3) Medical Law Review 423 http://medlaw.oxfordjournals.org/content/20/3/423
- J. Coggon, ‘Best Interests, Public Interest and the Power of the Medical Profession’ (2008) Health Care Analysis 219 http://link.springer.com/article/10.1007%2Fs10728-008-0087-7
- DCA, Mental Capacity Act Code of Practice (Crown Copyright, 2007), http://www.dca.gov.uk/legal-policy/mental-capacity/mca-cp.pdf
- M. Donnelly, ‘Best Interests, Patient Participation and the Mental Capacity Act 2005’ (2009) 17 Medical Law Review 1 http://medlaw.oxfordjournals.org/content/17/1/1.full
- S. Gilmore, ‘No Is the Hardest Word: Consent and Children’s Autonomy’ (2011) 23(1) Child and Family Law Quarterly 3 http://www.scie-socialcareonline.org.uk/no-is-the-hardest-word-consent-and-childrens-autonomy/r/a1CG0000000GigzMAC
- J. Samanta, ‘Lasting Powers of Attorney for Healthcare under the Mental Capacity Act 2005: Enhanced Prospective Self-Determination for Future Incapacity or a Simulacrum’ (2009) 17(3) Medical Law Review 377 http://medlaw.oxfordjournals.org/content/17/3/377.full.pdf+html
- T. Beauchamp and J. Childress, Principles of Biomedical Ethics, 5th edn (Oxford University Press, 2001), pp. 69–80 http://books.google.de/books?id=_14H7MOw1o4C
- N. Cantor, Making Decisions for the Profoundly Mentally Disabled (Basic Bioethics) (Cambridge, MA: MIT Press, 2005) http://books.google.de/books?id=52v4Z0XHXvMC
- T. Hope, J. Savulescu and J. Hendrick, Medical Ethics and Law: The Core Curriculum, 2nd edn (Edinburgh: Churchill Livingstone, 2008), chapters 10 and 11 http://books.google.de/books?id=DOPfK6LvGR0C
- B. Steinbock (ed.), The Oxford Handbook of Bioethics (Oxford University Press, 2007), chapter 4 http://books.google.de/books?id=hBtMPgAACAAJ
- C. W. van Staden and C. Krüger, ‘Incapacity to Give Informed Consent Owing to Mental Disorder’ (2003) 29 Journal of Medical Ethics 41 http://jme.bmj.com/content/29/1/41.full.pdf+html
Chapter 6 - Resource allocation and prioritisation
Derek is an 82 year old patient in the latter stages of bowel cancer. The treatment team feel that he has less than a year to live. A new drug has been introduced to the market which has been assessed by NICE as having the potential to give him approximately one more month of good quality life. Derek is keen to have the drug, not least because his grand-daughter Kayla is pregnant and he would dearly wish to see his new great grandchild before he dies. The treatment team approach Marc from Rowlett McGuinness LLP and Simon the hospital ethicist and tell them that, although they fully understand Derek’s reasons for wanting the drug, they feel that the cost of the drug and the small extension of life offered means that they cannot justify spending the money on this rather than on another procedure that might means a longer amount of good quality of life for someone else.
Marc tells the treatment team that, in the event of litigation, the great likelihood is that the courts would reject Derek’s claim. He notes that judges have made their reluctance to get involved plain, and that decision would have to be Wednesbury (p. 147, fn. 11) unreasonable for them to even consider getting involved. Marc also says that the decision that has been taken by the hospital does not seem to fall into that category. Indeed, given that the drug is expensive and the benefit to Derek in terms of QALYs is very small, an argument that the money would be better spent elsewhere certainly appears to be eminently reasonable. Therefore, while Derek’s reasons for wishing to have the drug are not only entirely understandable but also ones for which Marc has much sympathy, he also feels that the hospital’s decision will not be questioned by the courts. Simon struggles with this case as he also has the greatest sympathies with Derek's wish to extend his life to welcome his great-grand-child into the world. At the same time, Simon knows just as well as most other ethicists that resources are limited and tough decisions have to be taken, decisions that occasionally seem wicked or foolish or even both. He feels unable to assist as the debates for and against certain forms of healthcare allocation are conducted at a policy level, rather than at an individual patient level. Were he to be forced to give advice, he would say that Derek's aims are understandable and worthy of support, the hospital has at its disposal the means to assist him in achieving these aims and a mere argument of cost-effectiveness is inapplicable in determining whether this individual ought to be helped or not.
- C. Newdick, Who Should We Treat? Rights, Rationing and Resources in the NHS, 2nd edn (Oxford University Press, 2004) http://books.google.de/books?id=v5JtQgAACAAJ
- C. Newdick, ‘Public Health Ethics and Clinical Freedom’ (1998) 14 Journal of Contemporary Health Law and Policy 335 http://scholarship.law.edu/cgi/viewcontent.cgi?article=1337&context=jchlp
- K. Syrett, ‘Impotence or Importance? Judicial Review in an Era of Explicit NHS Rationing’ (2004) 67(2) Modern Law Review 289 http://onlinelibrary.wiley.com/doi/10.1111/j.1468-2230.2004.00487.x/abstract
- K. Veitch, ‘Juridification, Medicalisation and the Impact of EU Law: Patient Mobility and the Allocation of Scarce NHS Resources’ (2012) 20(3) Medical Law Review 362 http://medlaw.oxfordjournals.org/content/20/3/362.full.pdf+html
- J. Butler, The Ethics of Health Care Rationing (London: Cassell, 1999) http://books.google.de/books?id=cfkYQYeo_VoC
- R. Cookson and P. Dolan, ‘Principles of Justice in Health Care Rationing’ (2000) 26 Journal of Medical Ethics 523 http://jme.bmj.com/content/26/5/323.full.pdf+html
- T. Hope, J. Savulescu and J. Hendrick, Medical Law and Medical Ethics: The Core Curriculum, 2nd edn (Edinburgh: Churchill Livingstone, 2008), chapter 13 http://books.google.de/books?id=DOPfK6LvGR0C
- E. Matthews and E. Russell, Rationing Medical Care on the Basis of Age – The Moral Dimensions (Oxford: Radcliffe Publishing, 2005) http://books.google.de/books?id=WjC71zhOOycC
- I. Williams, S. Robinson and H. Dickinson, Rationing in Health Care – The Theory and Practice of Priority Setting (Bristol: The Policy Press, 2012) http://books.google.de/books?id=0IJ3WA6-234C
Chapter 7 - Assisted reproduction
Dorothy and her husband Tim have been trying to have a baby for a while and have so far been unsuccessful as there is both a problem with Dorothy's ability to carry a foetus to term and the quality of Tim's sperm. They have now managed to create five embryos in vitro using intracytoplasmic sperm injection (ICSI). In a first cycle of assisted reproduction, three embryos were implanted, and Dorothy lost two early on. The third is carried to 13 weeks when at a routine checkup no heartbeat can be detected and subsequent complications result in an emergency hysterectomy. The two remaining embryos are stored in a cryogenic storage facility at the NHS Trust. Dorothy and Tim are in the process of discussing how to proceed with the remaining embryos when Tim contracts meningitis and falls seriously ill. His health unfortunately deteriorates rapidly and he dies shortly after. Some years later, Dorothy is in a new long-term relationship with Andrew and they are beginning to think about having children of their own. Dorothy remembers that there are two embryos left in cryogenic storage but as she is now unable to have them implanted, Andrew's sister Anna agrees to be a surrogate. She has both embryos implanted and both are successfully brought to term. Anna has formed a strong bond to the twins and is now reluctant to give them to Dorothy and Andrew. The staff at the neonatal ward are unsure how to deal with this situation and ask Marc and Simon for advice.
Marc advises that there are two legal issues – the question of obtaining the embryos and that of the surrogacy arrangement and Anna’s change of mind. The Human Fertilisation and Embryology Act 1990 states that the embryos may be used if there is the consent of both parties. Given that Tim has died and cannot provide consent and cannot do so in the future, as he does not object Dorothy is able to use the embryos (p. 166). Marc notes that the surrogacy agreement is lawful so long as the terms correspond with those mandated by the Surrogacy Arrangements Act 1985 (p. 173) – such as that only reasonable expenses may be paid. Marc advises that, in relation to the actual enforcement of the agreement, the law is clear that the law will not intervene to force the surrogate to surrender any children born. Therefore, he states that Anna will be allowed to keep the twins should she choose to do so. Simon comes to the same conclusion and notes that assisted reproduction technologies have challenged conventional notions of family relations. Genetic parenthood is no longer indicative of there being a presumption of the strongest family bond and the advent of technologies where three individuals may be the genetic parents of a child, and a fourth individual the birth-mother, will make this issue the subject of additional debate. In the instant case, Anna has nurtured the embryos to birth and, for all intents and purposes, there is a strong physical and emotional bond which ought to be recognised. Dorothy and Andrew's emotional stakes in this arrangement must also be given recognition but in balancing the interests of all involved, Anna ought to be allowed to keep the children.
- M. Brazier, ‘Regulating the Reproduction Business’ (1999) 7(2) Medical Law Review 166 http://medlaw.oxfordjournals.org/content/7/2/166.full.pdf
- M. Freeman, ‘Does Surrogacy Have a Future after Brazier?’ (1999) 7 Medical Law Review 1 http://medlaw.oxfordjournals.org/content/7/1/1.full.pdf+html
- D. Gurnham and J. Miola, ‘Reproduction, Rights and the Welfare Interests of Children: The Times They Aren’t A-Changin’’ (2012) King’s Law Journal 29 http://www.ingentaconnect.com/content/hart/klj/2012/00000023/00000001/art00002?crawler=true
- E. Jackson, ‘Rethinking the Pre-Conception Welfare Principle’ in K. Horsey and H. Biggs (eds.), Human Fertilisation and Embryology: Reproducing Regulation (London: Routledge, 2007) http://books.google.de/books?id=doYhAQAAIAAJ
- C. Jones, Why Donor Insemination Requires Developments in Family Law: The Need for New Definitions of Parenthood (Lampeter: Edward Mellen Press, 2007) http://books.google.de/books?id=_FPTHgAACAAJ
- R. Lee and D. Morgan, Human Fertilisation and Embryology: Regulating the Reproduction Business (Oxford: Blackwell, 2001) http://books.google.de/books?id=D0JjQgAACAAJ
- J. McCandless and S. Sheldon, ‘The Human Fertilisation and Embryology Act 2008 and the Tenacity of the Sexual Family Form’ (2010) 72(2) Modern Law Review 175 http://onlinelibrary.wiley.com/doi/10.1111/j.1468-2230.2010.00790.x/abstract
- S. Sheldon, ‘Fragmenting Fatherhood: The Regulation of Reproductive Technologies’ (2005) 68(4) Modern Law Review 523 http://onlinelibrary.wiley.com/doi/10.1111/j.1468-2230.2005.00550.x/abstract
- J. Callahan (ed.), Reproduction, Ethics and the Law – Feminist Perspectives (Bloomington, IN: Indiana University Press, 1995) http://books.google.de/books?id=aSq5ouyOAVMC
- T. Hope, J. Savulescu and J. Hendrick, Medical Ethics and Law: The Core Curriculum, 2nd edn (Edinburgh: Churchill Livingstone, 2008), chapter 9 http://books.google.de/books?id=DOPfK6LvGR0C
- H. LaFollette (ed.), Ethics in Practice, 2nd edn (Malden: Blackwell, 2002), chapters 16 and 17 http://books.google.de/books?id=UjN9AgAAQBAJ
- B. Solberg, ‘Getting Beyond the Welfare of the Child in Assisted Reproduction’ (2009) 35 Journal of Medical Ethics 373 http://jme.bmj.com/content/35/6/373.full.pdf+html
Chapter 8 - Abortion, neonaticide and infanticide
Tara, a 25-year-old businesswoman, was 23 weeks pregnant and scheduled for an abortion. She had approached a clinic, which had accepted her for treatment and provided counselling. However, the stress of the procedure had been too much, and she went into spontaneous labour the night before she was due to undergo the termination. The baby, Mary, was born alive, but severely brain damaged and a medical assessment found that Mary was blind and deaf, but could feel pain. Staff at the hospital approach Marc from Rowlett McGuinness LLP and Simon the hospital ethicist and ask for their opinion regarding whether Mary should be provided with nursing care only and allowed to die.
Marc had previously been consulted in relation to the proposed termination, and had taken steps to ensure that the scheduling of the termination was within the bounds of the Abortion Act 1967 (p. 189). Since the pregnancy is less than 24 weeks old, it may be authorised by the ‘social ground’ in s.1(1)(a) of the 1967 Act (p. 190), which means that it is unlikely that there would have been a successful legal challenge had the operation been performed so long as two doctors had asserted that to continue with the pregnancy would have constituted a risk to the physical or mental health of Tara. However, once the baby has been born alive – whether this is as a result of spontaneous labour or a failed abortion – then the child is a person in its own right and has to be treated as such. Marc explains that this means that the primary considerations must be the welfare of the child, and whether to continue to provide treatment would be in the interests of the baby. He tells the staff at the hospital that in other cases involving brain damage and a prognosis involving a very poor quality of life, particularly when coupled with an ability to feel pain, the courts have been sympathetic to the view that treatment could be withdrawn and the baby allowed to die. Simon makes it clear that any termination is ethically problematic and that it would, of course, always be preferable to let life prosper to the fullest extent possible. At the same time this is, as so often, a situation of conflicting interests and the law's approach to balancing the mother-to-be's interests against that of the unborn life is ethically justifiable. Simon agrees that once the baby has been born, it is entitled to expect the full protection of society and the law and ought to be treated in the same way as other human beings, including medical care. Any discontinuation of medical treatment, or a limitation to nursing care only, would certainly not be permissible simply on the grounds of an assumption that Mary's life is 'worth less' than a healthy child's. Where, however, the focus of attention is on what is thought to be best for Mary, it is in some instances possible to argue that to make a baby such as Mary comfortable and allow her to die with a minimum of suffering is the preferable route to take. Simon expressly makes it clear that good ethical arguments can be found to argue for both the continued intensive-care treatment of Mary as well as the proposed option to allow her to die. The latter can, however, be justifiable and may, in this case, be the preferred option.
- S. Elliston, The Best Interests of the Child in Healthcare (Abingdon: Routledge, 2007) http://books.google.de/books?id=ooqNAgAAQBAJ
- B. Hewson, ‘Killing Off Mary: Was the Court of Appeal Right?’ (2001) 9(2) Medical Law Review 281 http://medlaw.oxfordjournals.org/content/9/3/281.full.pdf
- J. Keown, Abortion, Doctors and the Law: Some Aspects of the Legal Regulation of Abortion in England from 1803 to 1982 (Cambridge University Press, 1988) http://books.google.de/books?id=c6JPyfOBZYIC
- S. McGuinness, ‘Law, Reproduction and Disability: Fatally “Handicapped”?’ (2013) 21 Medical Law Review 213 http://medlaw.oxfordjournals.org/content/early/2013/01/02/medlaw.fws041.full.pdf+html
- A. Morris, ‘Selective Treatment of Irreversibly Impaired Infants: Decision-Making at the Threshold’ (2009) 17(3) Medical Law Review 347 http://medlaw.oxfordjournals.org/content/17/3/347.full.pdf+html
- S. Sheldon, Beyond Control: Medical Power and Abortion Law (London: Pluto Press, 1997) http://books.google.de/books?id=sYYhAQAAIAAJ
- M. Thomson, ‘Abortion Law and Professional Boundaries’ (2013) 22(2) Social and Legal Studies 191 http://sls.sagepub.com/content/early/2013/02/22/0964663912474740
- D. Boonin, A Defense of Abortion (Cambridge University Press, 2003) http://books.google.de/books?id=YhcosxnhtJ8C
- C. Cameron and R. Williamson, ‘In the World of Dolly, When Does a Human Embryo Acquire Respect?’ (2005) 31 Journal of Medical Ethics 215–20 http://jme.bmj.com/content/31/4/215.full.pdf+html
- R. Gillon, ‘Is There a “New Ethics” of Abortion?’ (2001) 27 Journal of Medical Ethics ii5–9 http://jme.bmj.com/content/27/suppl_2/ii5.full
- B. Steinbock (ed.), The Oxford Handbook of Bioethics (Oxford University Press, 2007), chapters 17–19 http://books.google.de/books?id=hBtMPgAACAAJ
- S. Wilkinson, ‘Eugenics, Embryo Selection, and the Equal Value Principle’ (2006) 1 Clinical Ethics 146 http://cet.sagepub.com/content/1/1/46.abstract
Chapter 9 - Organ transplantation and the use of human tissue
Joseph is a devout Christian and feels very strongly that making his organs available after his death is a 'gift of life' that he very much wants to give. He discusses his wishes with his relatives and also carries an organ donor card in his wallet at all times. Joseph has now been in a motorcycle accident and it has become apparent that the current run of diagnostics will result in a diagnosis of irreversible brain stem death. The hospital's transplantation coordinator approaches Joseph’s relatives, who have come to say their goodbyes. Joseph's daughter Jocelyn reacts angrily to the suggestion that Joseph wanted to be an organ donor. She had not had contact with Joseph for over ten years and he therefore had not discussed his wishes with her, but she is adamant that she wants her father to be buried 'intact'. Joseph's brother Godfrey suggests that he would be willing to give consent to the organ donation but would require assurances that any organs taken would only be allocated to "white people like Joseph". Marc and Simon are asked to advise on the legal and ethical issues.
Marc advises that this is a case where what is legally permissible may be different from what it is suggested should be done. The Human Tissue Act 2004 (p. 213) provides that organs may be removed, stored and used for the purposes of transplantation if there is appropriate consent from the donor. In this case, Marc notes that this has clearly been given. However, the Code of Practice (p.216) that accompanies the Act recommends that where the relatives disagree and do not wish that the organs be removed, hospitals should give serious consideration to not removing them. Indeed, Marc is of the opinion that the tone of the Code of Practice would favour not taking the organs in general terms. He acknowledges that this is against the spirit of the Act, which seeks to prioritise patient autonomy, but also says that this is a consequence of the scandals that led to the implementation of the new legislation. Simon interjects to say that he finds it quite problematic to go against Joseph's express wishes here: there is no doubt about what Joseph would have wanted and it is difficult to see how not respecting these wishes is in some way respectful of his preferences and his enduring dignity.
A complicating factor is that the objections come from sources who are problematic. Jocelyn has been estranged from her father and therefore does not know what he wants, and the law is clear that directed donation to a specific ethnic group will not be accepted. Simon agrees that Jocelyn's ability to influence the decision should be limited, as she is clearly not deciding on the basis of what she feels her father would have wanted but on the basis of her own preferences. The fact that Godfrey can quite simply not determine who should get Joseph's organs is, from Simon's point of view, one that does not need to be discussed at length: it is simply unacceptable to make such stipulations, in particular where they are driven by a discriminatory mindset. Thus, Marc concludes that while it is possible to take the organs in legal terms, the Code of Practice should be taken into account despite the fact that the relatives’ reasons for refusing to support donation are unreasonable. Simon disagrees strongly and feels that in order to respect the deceased's choices appropriately, explantation should be the only option. Marc continues and states that the lack of reason in those objections mean that Marc is unclear as to what to suggest, and indeed how he thinks that a court would act. If pressed for an answer, he is of the opinion that a court would perhaps try to protect the spirit of the Act and thus do what Joseph would have wanted, and support the donation. Simon agrees and strongly advises the transplant team to give effect to the express wishes of the deceased patient. Marc suggests that had Jocelyn not been estranged from her father, the court may have had a more complicated decision to make. Simon agrees to the extent that it might have been the case that Jocelyn might then have had more recent or accurate knowledge of her father's wishes but not if she simply expressed her own desires in the teeth of Joseph's. Simon adds that of course the relatives' feelings and wishes should be taken into account and where the taking of organs would result in anguish to members of a close family, this should play a role. In this case, however, he does not feel that this would be relevant.
- A. Cambon-Thomsen, ‘The Emergence of Biobanks in the Legal Landscape: Towards a New Model of Governance’ (2012) 39(1) Journal of Law and Society 113 http://onlinelibrary.wiley.com/doi/10.1111/j.1467-6478.2012.00573.x/abstract
- T. Caulfield and J. Kaye, ‘Broad Consent in Biobanking: Reflections on Seemingly Insurmountable Dilemmas’ (2009) 10 Medical Law International 85 http://mli.sagepub.com/content/10/2/85.short?rss=1&ssource=mfc
- A. Cronin, M. Rose, J. Dark and J. Douglas, ‘British Transplant Research Endangered by Human Tissue Act’ (2011) 37 Journal of Medical Ethics 512 http://jme.bmj.com/content/37/8/512.full.pdf+html
- K. Liddell and A. Hall, ‘Beyond Bristol and Alder Hey: The Future Regulation of Human Tissue’ (2005) 13 Medical Law Review 170 http://medlaw.oxfordjournals.org/content/13/2/170.full.pdf
- D. Price, ‘From Cosmos and Damien to Van Velzen: The Human Tissue Saga Continues’ (2003) 11 Medical Law Review 1 http://medlaw.oxfordjournals.org/content/11/1/1.long
- D. Price, ‘The Human Tissue Act 2004’ (2005) 68(5) Modern Law Review 798 http://onlinelibrary.wiley.com/journal/10.1111/(ISSN)1468-2230/issues
- B. Björkman and S. Ove Hansson, ‘Bodily Rights and Property Rights’ (2006) 32 Journal of Medical Ethics 209–14 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2565785/pdf/209.pdf
- N. Hoppe, Bioequity – Property and the Human Body (Aldershot: Ashgate, 2009) http://books.google.de/books?id=ZK408ZyvLCEC
- C. Lenk, J. Sándor and B. Gordijn (eds.), Biobanks and Tissue Research (Dordrecht: Springer, 2011) http://books.google.de/books?id=q9IoPFsnKO4C
- J. Radcliffe Richards, The Ethics of Transplants – Why Careless Thought Costs Lives (Oxford University Press, 2012) http://books.google.de/books?id=SSuRAAAAQBAJ
- R. Veatch, Transplantation Ethics (Washington, DC: Georgetown University Press, 2000) http://books.google.de/books?id=aNcbKssW30IC
Chapter 10 - Research
- H. Biggs, Healthcare Research Ethics and Law: Regulation, Review and Responsibility (Abingdon: Routledge, 2010) http://books.google.de/books?id=juaNAgAAQBAJ
- E. Cave, ‘Seen But Not Heard? Children in Clinical Trials’ (2010) 18(1) Medical Law Review 1 http://medlaw.oxfordjournals.org/content/18/1/1.full.pdf+html
- P. Ferguson, ‘Clinical Trials and Healthy Volunteers’ (2008) 16(1) Medical Law Review 23 http://medlaw.oxfordjournals.org/content/16/1/23.full.pdf+html
- S. Fovargue, ‘Doctrinal Incoherence or Practical Problem? Minor Parents Consenting to their Offspring’s Medical Treatment and Involvement in Research in England and Wales’ (2013) 25(1) Child and Family Law Quarterly 1 http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2245585
- K. Liddell, J. Bion, D. Chamberlain, C. Druml, E. Kompanje, F. Lemaire, D. Menon, B. Vrhovac and C. Weidermann, ‘Medical Research Involving Incapacitated Adults: Implications of the EU Clinical Trials Directive 2001/20/EC’ (2006) 14(3) Medical Law Review 367 http://medlaw.oxfordjournals.org/content/14/3/367.full.pdf+html
- J. Boomgaarden, P. Louhiala and U. Wiesing (eds.), Issues in Medical Research Ethics (New York: Berghahn Books, 2003) http://books.google.de/books?id=HqhAjTX4YRwC
- E. J. Emanuel, C. Grady, R. A. Crouch, R. K. Lie, F. G. Miller and D. Wendler (eds.), The Oxford Textbook of Clinical Research Ethics (New York: Oxford University Press, 2008) http://books.google.de/books?id=vKFYAtcLAxgC
- T. Hope, J. Savulescu and J. Hendrick, Medical Ethics and Medical Law: The Core Curriculum, 2nd edn (Edinburgh: Churchill Livingstone, 2008), chapter 14 http://books.google.de/books?id=DOPfK6LvGR0C
- P. Oliver, The Student’s Guide to Research Ethics, 2nd edn (Maidenhead: Open University Press, 2010) http://books.google.de/books?id=WIuNij1aGtoC
- B. Steinbock (ed.), The Oxford Handbook of Bioethics (Oxford University Press, 2007), chapters 24–7 http://books.google.de/books?id=hBtMPgAACAAJ
Chapter 11 - The end of life
Alexa is an adult with motor neurone disease. She is being treated at the hospital, but with the disease now in its final stages she is unable to feed herself or perform most tasks. She has indicated to the treatment team that she wants to die, but is unable to end her own life. She is therefore begging the doctors at the hospital to inject her with a fatal dose of a drug that would allow her to die painlessly but, in her view, with dignity. She has further stated that, should the hospital refuse to do this, her husband will remove her from the hospital and take her to a clinic in Switzerland that will help her to die. The treatment team approach Marc, from Rowlett McGuiness LLP, and Simon the hospital ethicist to ask for their opinion.
Marc notes that there are two issues to contend with in Alexa’s case. The first, her request to be allowed to die, is the subject of an easy answer in legal terms. As the courts have repeatedly made clear, most recently in the case of Nicklinson(p. 269), English law simply does not allow positive acts that cause death to be performed by doctors, as this would in some circumstances constitute murder. This is the case even though, as the House of Lords noted in Bland(p. 270), the courts accept that the moral distinction between withdrawing treatment and a positive act can be somewhat dubious. Nevertheless, the legal position is clear, and unless the principle of double effect can be invoked – and Marc notes that in this case it has not been suggested that it would apply – the injection would be unlawful. The situation regarding going to Switzerland is slightly less clear. Marc tells the treatment team that this would be nothing to do with the hospital, but that Alexa’s husband might be prosecuted for assisting her suicide. He said that while nobody has ever been prosecuted for accompanying a relative to a Swiss clinic, a consequence of the Purdy (p. 268) litigation has been that the DPP has now published guidance regarding when it might be appropriate to prosecute, and therefore that some more pressure might be put on the DPP to do so in the future. Nevertheless, Marc is of the opinion that a loving spouse is unlikely to fulfil the criteria in the DPP’s guidance that supports prosecution. Simon again outlines the need to enable the patient to give effect to her preferences in the most suitable fashion. If it is Alexa's wish to end her life as she is unable to live it in a way that she feels is meaningful, this is to be respected. However this (uncontroversial) part of the case is not problematic - the issue extends to either mandating and possibly compelling others to act on this. It would, in Simon's view, not be possible to distil from this some sort of duty for a doctor to perform the act of giving the injection or even making the injection available. This would certainly be an issue for the individual moral compass of each doctor who might be involved (fully independent of the doctor's legal compass which should tell her to certainly not give the injection). The legal provisons that prevent the giving of a lethal injection in these circumstances also serve to protect the medical professionals who might otherwise be put under pressure to consider assisting in these cases. However, Simon is clear that he would consider Alexa's husband's wish to accompany her to Switzerland to end her life there as an act of kindness that cannot easily be flawed and should be supported.
- J. Finnis, ‘Bland: Crossing the Rubicon’ (1993) 109 LQR 329 http://www.ncbi.nlm.nih.gov/pubmed/11652844
- M. Freeman, ‘Denying Death Its Dominion: Thoughts on the Diane Pretty Case’ (2003) 10(3) Medical Law Review 245 http://medlaw.oxfordjournals.org/content/10/3/245.full.pdf
- D. Gurnham, ‘Losing the Wood for the Trees: Burke and the Court of Appeal’ (2006) 14 Medical Law Review 253 http://medlaw.oxfordjournals.org/content/14/2/253.full
- R. Huxtable, Law, Ethics and Compromise at the End of Life: To Treat or Not to Treat? (London: Routledge, 2012) http://books.google.de/books?id=RUjJCrXOEIYC
- J. Keown, ‘The Case of Miss B: Suicide’s Slippery Slope?’ (2002) Journal of Medical Ethics 238 http://jme.bmj.com/content/28/4/238.full.pdf+html
- J. Keown, ‘Restoring Moral and Intellectual Shape to the Law after Bland’ (1997) 113 Law Quarterly Review 481 http://www.ncbi.nlm.nih.gov/pubmed/12962086
- S. Michalowski, ‘Relying on Common Law Defences to Legalise Assisted Dying: Problems and Possibilities’ (2013) 21(3) Medical Law Review 337 http://medlaw.oxfordjournals.org/content/21/3/337
- S. Ost, ‘The De-Medicalisation of Assisted Dying: Is a Less Medicalised Model the Way Forward?’ (2010) 18(4) Medical Law Review 497 http://medlaw.oxfordjournals.org/content/18/4/497.full.pdf+html
- S. W. Smith, End-of-Life Decisions in Medical Care: Principles and Policies for Regulating the Dying Process (Cambridge University Press, 2012) http://books.google.de/books?id=Yj12GLMI3mEC
- E. Garrard and S. Wilkinson, ‘Passive Euthanasia’ (2005) 31 Journal of Medical Ethics 64 http://jme.bmj.com/content/31/2/64.full.pdf+html
- T. Hope, J. Savulescu and J. Hendrick, Medical Ethics and Law: The Core Curriculum, 2nd edn (Edinburgh: Churchill Livingstone, 2008), chapter 12 http://books.google.de/books?id=DOPfK6LvGR0C
- J. Keown, Euthanasia, Ethics and Public Policy – An Argument Against Legalisation (Cambridge University Press, 2002) http://books.google.de/books?id=ce83gBnSpfYC
- H. LaFollette (ed.), Ethics in Practice (Malden: Blackwell, 2002), chapters 1–4 http://books.google.de/books?id=UjN9AgAAQBAJ
- B. Steinbock (ed.), The Oxford Handbook of Bioethics (Oxford University Press, 2007), chapters 12–16 http://books.google.de/books?id=hBtMPgAACAAJ
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