1. Session 9 Key Concepts (3) Beginning and end of life

2. Beginning of life Infertility rights; law; Human Fertilisation and Embryology Act 1990 Assisted reproduction/conception ethics; access to treatment; reproductive choices* Controlling fertility and pregnancy; autonomy; law; childbirth * Note: genetic medicine affects reproductive choice

3. Beginning of life Infertility no objective definition Illness/disease justifying medical intervention? moral objections to assisted reproduction human rights Human Fertilisation and Embryology Act 1990 aim of ensuring techniques are safe and ethical www,hfea.gov,uk overtaken by pace of scientific progress

4. Beginning of life Human Fertilisation and Embryology Act 1990 Statutory authority – HFEA Prohibits certain activities Regulation of licensing: infertility treatment storage of gametes and embryos research Definition of ‘mother’ and ‘father’ Regulates disclosure of information and confidentiality Defence of ‘conscientious objection’ Criminal offences and enforcement Consent requirements Code of Practice

5. Beginning of life Assisted reproduction/conception ethical issues societal issues rights and interests access to treatment reproductive choices Surrogacy - Re C (a minor) [1985] FLR 846 IVF - Louise Brown 1978 AIH - R v Human Fertilisation and Embryology Authority, ex p Blood [1997] 2 All ER 687

6. Beginning of life moral issues right to reproduce? Interests of potential child Interests of potential parents Interests of state who should have access to assisted reproduction/conception technologies? heterosexual couples? same sex couples? single people? surrogates? older women? who should pay? the infertile couple/individual? NHS? is infertility a disease? if NHS pay for couples who are ‘medically infertile’ should NHS for everyone seeking IVF?

7. Assisted reproduction/conception Reproductive techniques include: Artificial insemination AIH/AID Gamete intrafallopian transfer GIFT In vitro fertilisation IVF Intracytoplasmic sperm injection ICIS Regulation Human Fertilisation and Embryology Act 1990 Legal issues Right to reproduce? Human Rights Act 1998 Art 12 R v Secretary of State for Home Department ex p Mellor [2001] 2 FCR 153 Access to infertility treatment HFEA s 13(5) – ‘welfare’ of child provision Code of Practice 2004

8. Assisted reproduction/conception Examples of moral/legal issues AIH/AID Posthumous insemination R v Human Fertilisation and Embryology Authority, ex p Blood [1997] 2 All ER 687 – consent/best interests issues following delay in AIH after removal of sperm from dying husband and subsequent storage; also import/export IVF Parenthood Leeds teaching Hospital NHS Trust v A [2003] 1 FLR 1091 – fatherhood consent issues following error in AI Consent to storage of use of embryos Evans v Amicus Healthcare Ltd [2003] 4 All ER 903 – withdrawal of partners consent following break-up of relationship Multiple pregnancies and reduction of multifetal pregnancy Preimplantation genetic diagnosis and tissue typing of embryos sex and donor (saviour siblings) selection R (Josephine Quintavalle) v HFEA [2005] UKHL 28

9. Assisted reproduction/conception Examples of moral/legal issues Access to infertility treatment Challenge by way of judicial review: R v Ethical Committee St Mary’s Hospital ex p Harriott [1998] 1 FLR 512 - mother’s status R v Sheffield HA ex p Seale [1996] 25 BMLR 1 NICE Feb 2004 www,nice,org.uk/cgo11

10. Assisted reproduction/conception Exercise Examples of moral/legal issues donor (saviour siblings) selection ethical aspects Duty-based  using as a means to an end  harming child for benefit of others Rights-based  anyone’s rights violated? Uitilitarian  potential to maximise utility  saving a life Virtue-based  parent’s loving motives

11. Assisted reproduction/conception other areas Surrogacy ethical issues law HEFA 1990  Parental Order s30 Adoption Act 1976 Surrogacy Arrangements Act 1985  prohibition of commercialisation future See - M Brazier (Chairman) Surrogacy: Review for Health Ministers of Current Arrangements for Payment and Regulation (1998 Cm 4068) Embryo research, stem cells and reproductive cloning R (Bruno Quintavalle) v Secretary of State for Health [2003] UKHL 13 Human Reproductive Cloning Act 2001

12. Controlling fertility and pregnancy Sterilisation Contraception Pregnancy Abortion

13. Controlling fertility and pregnancy Sterilisation voluntary sterilisation consent issues non-voluntary sterilisation incompetent patients moral issues  rights to reproduce  Re D [1976] 1 All ER 326 - court refused sterilisation of 11 year-old with Sotos syndrome – ‘sterilisation involved depravation of a basic human right’  Re B (a minor)(wardship: sterilisation) [1987] 2 All ER 206 -sterilisation authorised – ‘the right is only such when reproduction is the result of informed choice..’  best interests  eugenics

14. Controlling fertility and pregnancy Sterilisation non-voluntary sterilisation incompetent patients best interests guiding principle justifying medical intervention in case of incapacity (see Mental Capacity Act 2005) Practice Note: Medical and Welfare Decisions For Adults Who Lack Capacity [2001] 2 FLR 158 courts permission required for non-consensual sterilisation permission granted only if in patients best interests  factors taken into account include:  evidence that patient lacks capacity  real need for operation  consequences of pregnancy  consideration of all possible medical options/lesser measures

15. Controlling fertility and pregnancy Sterilisation non-voluntary sterilisation therapeutic vs non-therapeutic distinctions - ‘medical’ best interests vs ‘social’ best interests case law: Re B (a minor)(wardship: sterilisation) [1987] 2 All ER 206 - sterilisation authorised – welfare of patient Re F (mental patient sterilisation) [1990] 2 AC 1 ( sub nom F v West Berkshire Health Authority [1989] 2 All ER 545) – CA – basis for best interests test Re LC (Medical treatment: sterilisation) [1997] 2 FLR 258 - - sterilisation refused – no real risk of pregnancy Re S (Adult patient: sterilisation) [2000] 3 WLR 1288 – CA – IUD rather than hysterectomy – best interest synonymous with welfare – decided on more than medical grounds – ethical, social, moral and welfare considerations also weighed in balance - Butler-Sloss P

16. Controlling fertility and pregnancy Contraception no legal definition of contraception prevention of fertilisation  covers pre-coital methods - barrier methods and oral/long acting contraceptives post-fertilisation preimplantation  covers post-coital methods – IUD, ‘morning-after pill’ post-implantation abortifacients  mifespristone RU486  pregnancy prevented or terminated?  N.B. termination must comply with Abortion Act 1967

17. Controlling fertility and pregnancy Post-coital contraception R(Smeaton) v Secretary of State for Health [2002] EWHC 610 - Court rejected SPUC claim that sale of ‘morning after’ pill without prescription contravened 1861 OAP Act – term miscarriage to be read as an ordinary word in light of current scientific and medical knowledge Contraception and minors Gillick v West Norfolk and Wisbech Area Health Authority [1985] 3 All ER 402 Lord Fraser: doctor justified in in providing contraceptive advice without parental consent (or even knowledge) provided certain conditions/requirements fulfilled

18. Pregnancy Civil and criminal liability aspects: wrongful pregnancy/wrongful birth failed sterilisation/undiagnosed pregnancy – actions in negligence damages issue:  ‘mother’s claim’ – pain/suffering/loss or earnings  ‘upkeep of child’ – more controversial McFarlane v Tayside Health Board [2000] AC 59 HL - ‘healthy child’  ‘no maintenance’ rule  Parkinson v St James and Seacroft University Hospital Trust [2001] EWCA Civ 530 – CA - where ‘significant disability’ maintenance claim upheld  Rees v Darlington Memorial Hospital NHS Trust [2004] AC 309 – disabled mother not child - HL upheld McFarlane but 4/3 split re exceptional costs

19. Pregnancy Civil and criminal liability aspects: wrongful injury to foetus does a mother’s owe a moral obligation to foetus? knowledge of what is ‘good for’ foetus? an obligation to follow all medical (and other) advice? moral obligation to lead a ‘healthy’ lifestyle? does a mother’s owe a legal obligation to foetus? Re F (in utero) [1988] 2 All ER 193- until born (and separate existence) foetus is not a legal person with exception (negligent driving) Congenital Disabilities (Civil Liability) Act 1976 excludes claim by child against mother preferred action to make child ward of court after birth why cannot mothers be sued for damage to foetus?

20. Termination of pregnancy Moral issues include: autonomy, rights and interests when does life begin? whose life is more important?  doctrine of double effect advances in technology  medical; diagnostic status of embryo and foetus?  full; limited; proportional personhood  uncontroversial - ‘normal’ adult human beings  controversial - infants, children, incompetent adults  controversial - foetuses

21. Legal aspects Legal protection of the foetus includes: Criminal law provided born alive, criminal offence to harm foetus in utero as result of criminal act committed against mother Attorney-General’s Reference (No 3 of 1994) [1998] AC 245 HL ruled on pregnant woman stabbed – premature birth – manslaughter deliberate non-treatment of living abortus could amount to murder/manslaughter Abortion Act 1967  limits late abortion  legally relevant stages re foetal development  pre-implantation  implantation to 24 weeks  post 24 weeks to birth

22. Legal aspects (cont) Offences Against Persons Act 1861  s58 attempt to procure miscarriage  s59 supply of drugs or other instruments Infant Life (Preservation) Act 1929  covers foetus during childbirth  s1(2) presumption 28 week foetus capable of being born alive Human Fertilisation and Embryology Act 1990 Civil law Congenital Disabilities (Civil Liability) Act 1976 – able to sue for certain pre-birth injuries

23. Legal aspects (cont) Law places autonomy of woman above interests of foetus Re MB (adult: medical treatment) [1997] 2 FCR 541– CA - pregnant, competent woman has right to refuse all treatment St George’s Healthcare NHS Trust v S [1999] Fam 26 CA – upheld Re MB – “ while pregnancy increases the personal responsibilities of a woman it does not diminish her entitlement to decide whether or not to undergo medical treatment.” A woman’s right to reject treatment exists “ even if her own life or that of the unborn child depends on it.” and even if her decision is considered “morally repugnant.” Judge LJ

24. Key Concepts (3) continued Beginning and end of life

25. End of life death obligation to prolong life ethical concepts sanctity of life quality of life end of life distinctions futile vs useful care best interests do not resuscitate orders acts vs omissions killing vs letting die withdrawing treatment vs withholding treatment foreseeing vs intending doctrine of double effect Intentions euthanasia assisted suicide

26. End of life Decision-making at the end of life why is it more difficult than it once was?

27. End of life Definition of Death no formal definition at statute heart/breathing stop? intensive treatment to maintain vital function medical profession – brainstem death common law definition Re A [1992] 2 Med LR 303 Airedale NHS Trust v Bland [1993] AC 879

28. Sanctity of Life roots in Judeo-Christain beliefs inherent value of life life requires no justification quality and quantity of life irrelevant differing versions: vitalism –human life of absolute value life a basic but not an absolute good

29. Quality of Life subject to many interpretations opposite end of spectrum from the principle of the sanctity of life life not intrinsically of value involves a value judgment emphasis on type of life being lived focuses on an individual’s capacity or potential to live a ‘normal life’

30. Legal aspects Sanctity of Life Human Rights Act 1998 Art 2 repeatedly confirmed in courts ? absolute principle prohibits active steps to terminate life but does not require every patient to be resuscitated or maintained indefinitely on life support Quality of Life can it very be in a patient’s best interests that his/her life should not be continued? Airedale NHS Trust v Bland [1993] AC 879 Duty regarding dying/incurably ill act in patient’s best interests prevent/retard deterioration of condition relieve pain and suffering

31. Legal aspects Medical futility treatment that offers no benefit to patient cases involving: profoundly handicapped babies patients in permanent/persistent vegetative state PVS or near PVS patients very severely impaired although sensate Re C (A minor) (Wardship: Medical Treatment) [1989] 2 All ER 782 severely handicapped16 week premature baby progress ‘hopeless’ Court asked whether life sustaining treatment should be given should it be required to keep C alive Court declared that it was in C’s best interests to withhold such treatment on basis that “the life that the treatment would prolong would be so cruel as to be intolerable”

32. Withdrawing treatment withdrawing Treatment Re G [1995] 3 Med L Rev 80 best interests test Re D (Adult: Medical Treatment) [1998] 1 FLR 411 substituted judgement test it may be lawful to ‘withdraw’ treatment in a hopeless case Legal ‘withdrawal of treatment’ includes: ceasing a treatment (removing a feeding tube) not administering a treatment (not resuscitating) Airedale NHS Trust v Bland [1993] UK British Medical Association Guidelines on withdrawing treatment (1999)

33. Artificial Hydration & Nutrition methods of administration ethical Issues is this procedure ordinary or extraordinary? oral nutrition never to be withdrawn requesting life-prolonging treatment R (Burke) v GMC [2004] EWHC 1879; [2005] EWCH 1003 challenged legality of withdrawal of artificial nutrition and hydration court held – common law imposes duty on those who care for incapacitated patient to provide artificial nutrition/hydration as long as it prolongs life and is in accordance with patient’s express wishes refusing life-prolonging treatment Re B (adult refusal of medical treatment) [2002] 2 All ER 449 – adult with capacity entitled to refuse all life prolonging medical treatment

34. Legal decisions concerning Sanctity of Life and Quality of Life Best interests test applied: Re B (A minor) (Wardship: Medical Treatment) [1981] 1 WLR 1421 - operation in patient’s best interests – court applies the ‘demonstrably awful’ test Re C (A minor) (Wardship: Medical Treatment) [1989] 2 All ER 782 - best interests not to prolong life – active treatment withdrawn where necessary Quality of life as means of determining best interests: Re J (A minor) (Wardship: Medical Treatment) [1990] 3 All ER 930 - quality of life principle applied Medical profession not required to carry out treatment against their clinical judgement: Re J (A minor) (Wardship: Medical Treatment) [1993] 4 All ER 614 – not always in patient’s best interests for aggressive therapy to be pursued

35. Legal decisions concerning Sanctity of Life and Quality of Life (cont) Application of parental views: Re C (A Baby) (1996) 2 FLR 43 – clinical factors determinative not parents’ views Re C (A Minor) (Medical treatment) [1998] 1 FLR 384 – parents adopted sanctity of life approach but court applied best interests principle Re T (A Minor)(Wardship:Medical Treatment) [1997] 1 All ER 906 – quality of life with or without operation considered - confirmed that sanctity of life is not an absolute principle Treatment using force not in patient’s best interests: Re D (Medical Treatment: Consent) [1998] 2 FLR 22 – best interests not to receive burdensome treatment

36. Legal decisions concerning Sanctity of Life and Quality of Life (cont) Best interest test reaffirmed: Airedale NHS Trust v Bland [1993] AC 879 - sanctity of life principle not absolute - but forbids the taking of active measures to shorten life of a terminally ill patient A NHS Trust v D [2000] 2 FLR 677 - best interests test only criterion Re A (Children)(Conjoined twins: surgical separation) [2001] Fam 147 best interest overrides parental wishes erodes line between acts and omissions

37. Euthanasia Active Euthanasia e.g., administering a fatal dose of potassium to a terminally ill cancer patient Passive Euthanasia e.g. withholding of treatment - failing to revive a patient who has signed a DNR order e.g cessation of treatment - turning off a respirator Voluntary killing or letting die a competent person who has expressed a desire for this Non-voluntary killing or letting die when the patient is unable to express such a desire Assisted Suicide not actually euthanasia, as 'patient' ultimately kills him/herself BUT thin between the two can, however, become very thin

38. EuthanasiaPassiveActive (assisted)Active (unassisted) Voluntary competent patient chooses ; informed decision may be legal in some circumstances (competent patient’s wishes, etc.) unlawful homicide (murder or manslaughter); or may be equivalent to suicide (assisted suicide) equivalent to suicide Non-voluntary incompetent, e.g. unconscious, patient unable to make an expressed wish may be legal in some circumstances (e.g with court permission) equivalent to murdernot possible Involuntary without a request or without (or against) competent patient’s consent not lawful (but may be legal in specific circumstances where futile treatment is not offered: DNR ; etc.) equivalent to murder not possible

39. The Principle of Double Effect Thomas Aquinas it is morally permissible to perform an act that results in both good and bad effects if all of the following conditions are met: the act must be good in itself, or at least morally neutral only the good effect is intended the good effect must not be obtained by means of the bad effect the bad effect must not be intended, only permitted there must be a proportionately grave reason for permitting the bad effect there must be no other way to achieve the good

40. Legal recognition of doctrine of double effect R v Bodkin Adams (1957) GP acquitted of murder by administration of increasing doses of opiates to elderly patients. Devlin, J (judge) introduced double effect doctrine: if the first purpose of medicine, the restoration of health, could no longer be achieved, there was still much for the doctor to do, and he was entitled to do all that was proper and necessary to relieve pain and suffering even if the measures he took might incidentally shorten life”

41. Legal recognition of doctrine of double effect (cont) Airedale NHS Trust v Bland [1993] AC 879 Lord Goff “.[It is] the established rule that a doctor may, when caring for a patient, who is, for example, dying of cancer, lawfully administer painkilling drugs despite the fact that he knows that an incidental effect of that application will be to abbreviate the patient’s life …Such decisions may properly be made as part of the care of the living patient, in his best interest; and, on this basis, the treatment will be lawful”.

42. Legal recognition of doctrine of double effect - problems contrary to traditional notions of criminal law intention and causation Airedale NHS Trust v Bland [1993] AC 879 concern expressed about dubious demarcation between primary (direct) and secondary (oblique) intention

43. Criminal Law Aspects ‘Active Euthanasia’ deliberate termination of life R v Bodkin Adams (1957) – acquitted of murder Devlin, J : “ No doctor,nor any man, no more in the case of a dying man than a healthy, has the right to cut the thread of life” R v Carr (1986) – acquitted of murder Mars Jones, J – “a patient is entitled to every hour that God has given him however seriously ill he might be” R v Cox (1992) – convicted of attempted murder R v Moor (1999) – acquitted of murder

44. Criminal Law Aspects ‘Active Euthanasia’ mercy killing - unlawful Airedale NHS Trust v Bland [1993] AC 879 Lord Mustill: “… that ‘mercy killing’ by active means is murder … has never, so far as I know, been doubted. The fact that the doctor’s motives are kindly will, for some, although not for all, transform the moral quality of his act, but this makes no difference in law. It is the intent to kill or cause grievous bodily harm which constitutes the mens rea of murder.”

45. Criminal Law Aspects ‘Passive Euthanasia’ omissions are not criminal R v Arthur (1981) – criminal case –– unwanted newborn baby with Down’s Syndrome – prescribed dihydrocodeine and ‘Nursing care only’ – no attempts to revive when developed broncho-pneumonia doctor acquitted of attempted murder Court drew distinction between acts and omissions Court decided ‘procedure’ was one which could be supported by a responsible body of medical opinion (Bolam test)

46. Criminal Law Aspects ‘ Passive Euthanasia’ (cont) withdrawing treatment not criminal ‣ Airedale NHS Trust v Bland [1993] AC 879 – incompetent adult – PVS (permanent vegetative state) Best interests test and Bolam test of professional standards Lawful in ‘hopeless’ cases Withdrawal of treatment includes: withholding/not commencing treatment (e.g. not resuscitating) ceasing treatment (e.g. removing a feeding tube) ‣ BMA guidelines

47. Criminal Law Aspects ‘Passive Euthanasia’ (cont) withholding treatment not criminal ‣ Do not resucitate orders (DNRs) - based on concept of medical futility - Involves quality of life decisions - form of withholding treatment: resuscitation – medical treatment (incompetent patients – treatment on basis of best interests; competent patient – consent required and able to refuse) Re R (Adult: Medical Treatment) (1996) treatment likely to be unsuccessful and burdensome - withholding resuscitation and medication would be in patient’s best interests and so lawful ‣ BMA/RCN/UK Resuscitation Council Guidelines (2001)

48. Criminal Law Aspects ‘Passive Euthanasia’ (cont) punishable omissions Airedale NHS Trust v Bland [1993] AC 879 Law Lords rejected the view that liability attaches only to acts but never to omissions – could be liability for an omission if a prior duty to act existed and was breached “a person may be criminally liable for the consequences of an omission if he stands in such a relation to the victim that he is under a duty to act. Where the result is death the offence will usually be manslaughter, but if the necessary intent is proved it will be murder” Lord Mustill

49. Criminal Law Aspects Competent patient competent adult able to refuse any treatment permissible to withdraw life-support and allow terminally ill patient to die at patient’s request provided patient is legally competent positive act to actively terminate a terminally ill patient’s life NOT permissible whether patient is competent or incompetent

50. Criminal Law Aspects Advance directives or living wills declaration by competent adult concerning medical treatment in the event of future incompetence and the occurrence of medical conditions decision must have been made when the patient was demonstrably competent acting voluntarily, and the decision must cover the prevailing circumstances when treatment contemplated no statutory authority

51. Criminal Law Aspects Incompetent patient withholding/withdrawing treatment - ‘passive, non-voluntary euthanasia’ ‘best interests’ principle sanctity of life principle not absolute forbids taking of active steps to shorten life of a terminally ill patient does not justify compelling the keeping alive of terminally ill patient where it would merely prolong suffering

52. Criminal Law Aspects Assisting terminally ill Key principles: medical treatment may be administered to a terminally ill person to alleviate pain although it may hasten death, but medical treatment may not be given intended to bring about death doctrine of double effect subject to judicial authority it is permissible to cease to take active steps to keep a patient in a permanent vegetative state alive distinction between positive acts causing (and intending) death and the negative act of withdrawing or withholding treatment which artificially prolongs life (and by doing so will inevitably and intentionally result in death). Bland (1993) and more recently confirmed by Pretty (2002)

53. House of Lords Report of Select Committee on Medical Ethics 1994 ‘right to refuse treatment is far removed from the right to request assistance in dying’ – 236 ‘recommend no change in the law to permit euthanasia’ – 237 'We concluded that it was virtually impossible to ensure that all acts of euthanasia were truly voluntary and that any liberalisation of the law in the United Kingdom could not be abused. We were also concerned that vulnerable people - the elderly, lonely, sick or distressed - would feel pressure, whether real or imagined, to request early death.' Lord Walton, the committee chairman, in a speech to the House of Lords on 9 May 1994

54. Parliamentary Bills Medical Treatment (Prevention of Euthanasia) Bill 2000 Clause 1: It shall be unlawful for any person responsible for the care of a patient to withdraw or withhold from the patient medical treatment or sustenance if his purpose or one of his purposes in doing so is to hasten or otherwise cause the death of the patient. Patient (Assisted Dying) Bill (Bill No.37) A Bill to enable a competent adult who is suffering unbearably as a result of a terminal or a serious and progressive physical illness to receive medical help to die at his own considered and persistent request; and to make provision for a person suffering from such a condition to receive pain relief medication.

55. Assisted Suicide AS - provide someone with the means to commit suicide – PAS ‘physician’ assisted suicide s2 Suicide Act 1962 a person who aids, abets, counsels or procures the suicide of another, or an attempt by another to commit suicide, shall be liable on conviction on indictment to imprisonment for a term not exceeding fourteen years Offences Against the Person s23 Offences against the Person Act 1861 An offence to “unlawfully administer to or cause to be administered to or taken by any other person any poison or other destructive or noxious thing, so as to thereby endanger the life of such a person..” R v Larkin [1943] KB 174 where the act which a person is engaged in performing is unlawful, then, if it is at the same time a dangerous act… and quite inadvertently he causes the death of that other person by that act, then he is guilty of manslaughter. Consent is never a defence to murder or manslaughter

56. Criminal Law: Summary Active euthanasia (mercy killing) illegal – homicide Assisting suicide illegal Passive euthanasia not necessarily illegal Intending relief of distress, but foreseeing death normally legal Withdrawing/withholding treatment legally equivalent – passive, not active treatment Competent patient refusing life-saving treatment not suicide, lawful

57. Criminal Law: Summary competent adult patient can refuse treatment, even if life- sustaining illegal to actively bring about someone’s death either with or without that person’s consent competent patient cannot request an act to be taken to end his/her life (i.e. no right to die/assisted suicide) - Pretty v UK [2002] 2 FLR 45 artificial feeding/hydration is medical treatment an omission to act (withholding/withdrawing treatment) permissible when not in a duty to treat where it is not in the patient’s best interests (e.g. futile or unduly burdensome) patient’s best interests to continue treatment court permission normally required to withdraw treatment from PVS patient under the doctrine of double effect acceptable if unwanted side-effect of giving pain relieving drugs is shortening of patient’s life - Airedale NHS Trust v Bland [1993] AC 879