Ethics of Enteral Access Routes

1. Ethics of Enteral Access Routes Dr Simon Gabe Consultant Gastroenterologist St Mark’s Hospital

2. Religion

3. Human Rights

4. Human Rights • Fundamental right to life • Does not mean bare existence • Existence that has a minimum quality & as free as possible from distress & pain • Right to die • When individuals decide that their life is below the minimum • Considerations of humanity imply a right to assistance (medical) to die painlessly & easily

5. to recognise when death is occurring to recognise when death is occurring Death & Dying Death, like birth, is a natural event A professional carer has a duty to prolong life but not to inappropriately prolong dying The difficulty …

6. Dying • Sudden / final event of deterioration • When deterioration is quick – dying • Appropriate to: • Basic human support • Compassion • Emotional support • Medical treatment • Withdraw medical treatment

7. Ashby & Stofell, 1995 “The purpose of medical science is to benefit the life and health of those who turn to medicine. It surely was never intended that it be used to prolong biological life in patients bereft of the prospect of returning to an even limited exercise of human life.”

8. I'm not afraid to die… I just don't want to be there when it happens!

9. Medical Ethics Moral obligations which govern the practice of medicine Four principles approach • Autonomy • Non-maleficence • Beneficence • Justice Other approaches can be considered also (religious, humanitarian …)

10. Autonomy • principle of self-determination • recognition of the patients rights Non-maleficence • Deliberate avoidance of harm Beneficence • Provides the patient with some benefit Justice • The fair and equitable provision of available medical resources to all

11. Essentials for life Oxygen - minutes Water - days Food - weeks (Reproduction - years) There is a duty to provide these essentials for life when caring for a patient There is a duty to provide these essentials for life when caring for a patient

12. Duty to provide nutrition • Is the duty absolute? • If the body cannot tolerate nutrition • The leading criterion is the patients best interest • Duty to feed is presumptive not absolute It is rebuttable in certain circumstances: • Patients refusal of consent • A persistent vegetative state?

13. Ethics & Nutrition Support • Does the provision of nutritional support constitute a medical treatment? • Does removal of an IV line or feeding tube ‘cause’ the death of a patient? • Is discontinuation of feeding, murder?

14. Murder The wilful killing of any subject whatever, with malice aforethought … Can be a deliberate act or neglect

15. Competence • Patients are competent to consent to treatment, or to refuse consent, if they have capacity to arrive at the decision • All adults are presumed competent, although this can be rebutted • A doctor who overrides a competent patients refusal of treatment can be liable in battery

16. When is it lawful to withhold or withdraw life-prolonging treatment?

17. Autonomy Rules! Passive assisted suicide allowed Passive assisted suicide allowed Mrs B 43 year old lady Paralysed from the neck down Kept alive by ventilation Felt that her life was not worth living Asked doctors to switch off the ventilator • Doctors refused Court felt that she was competent Ventilator switched off at her request

18. Assisted suicide refused Assisted suicide refused Diane Pretty • 43 year old, MND • Paralysed from the neck down • Not on a ventilator • Virtually unable to speak • Enteral tube feeding • Wanted to die in a humaine & dignified manner (assisted by her husband) • Court refused

19. IncompetenceAdvance directive • Anticipatory refusal of treatment • Can be written or oral • An advance refusal is legally binding if: “clearly established & applicable to the circumstances” • However, may not be directly applicable to current circumstances • A doctor who overrides a binding advance directive is liable for battery

20. IncompetenceNo advance directive The legal duty of the doctor is to act in the patients best interests

21. Best Interests • England & Wales • Value judgement • “what a reasonable person similarly afflicted would choose” • Mental Capacity Act (2005) into effect in 2007 • Appoint a donee a lasting power of attorney • North America • Substituted judgement • “what the patient would have wanted for herself, had she been capable of choosing”

22. Airedale Trust vs. Bland (1993) Anthony Bland • Age 17 • Crushed in the Hillsborough stadium disaster • Persistent vegetative state for over 3 years • Completely insensate with no hope of recovery • His doctors, with the full agreement of his parents, wished to withdraw the means of intensive care

23. Airedale Trust vs. Bland (1993) • High Court: declared that the withdrawal of hydration and feeding would be unlawful • Court of Appeal: supported the High Court • House of Lords: dismissed the Court of Appeal judgement • The provision medical treatment could no longer provide the chance of recovery • Therefore medical treatment could be withdrawn

24. Important rulings after Bland • Best interests • Medical decisions for a mentally incapable patient should be made in the best interests of the patient • If a decision to withdraw or withhold life prolonging treatment is in best interests of the patient then it is lawful (i.e. best interests can include death) • Feeding • Artificial nutrition & hydration are medical treatments • Feeding against a patients wishes constitutes assault • Withholding and withdrawing treatment • There is no legal difference

25. Terri Schiavo Feb 1990 Cardiac arrest with severe brain damage (PVS) May 1998 Mr Schiavo files petition to remove feeding tube Oct 2003 Feeding tube removed "Terri's Law“passed - Governor able to order doctors to feed Mrs Schiavo Sept 2004 Florida Supreme Court strikes down law 18 Mar 2005 Florida court allows removal of tube 22 Mar 2005 Federal judge rejects appeal 23 Mar 2005 Appeals court backs federal ruling 29 Mar 2005 Federal court grants parents leave to appeal 30 Mar 2005 Federal court & Supreme Court reject parents' appeal 31 Mar 2005 Terri Schiavo dies

26. Trial by media is very wrong The Court is the best place for a trial Trial by media is very wrong The Court is the best place for a trial

27. Passive Euthanasia The intentional hastening of a patients death by withholding or withdrawing treatment: where causing death is the doctors aim

28. Passive Euthanasia Competent v Incompetent Competentpatient Patient autonomy is the trump card Should have 2 opinions of competence Incompetent patient • PVS: legal precedents • Dementia: not tested in the courts

29. Advanced DementiaFeeding Tubes • Often difficult to provide adequate nutrition • Purpose of tube usually unclear for the patient (resulting in tube withdrawal) • Disputed whether aspiration is reduced by NG or PEG tubes • Morbidity & mortality with PEG insertion • Little evidence to suggest that tube feeding prolongs life

30. Advanced DementiaFeeding Tubes • Increasing view that artificial nutrition should not be used in patients with advanced dementia • But there will always be exceptions e.g. vascular disease (cognitive function may improve) • Requires close discussion with family • Patient autonomy paramount …??

31. PEG placement • Cultural variations in treatment • Germany / UK • Nursing homes insist on PEG over NG • Dementia, CVA Ethical issues?

32. Should I tube feed this patient? If in doubt • A trial of treatment is recommended NG or PEG? • NG feeding may be more appropriate than PEG in this setting • However, trial of PEG feeding possible

33. Case presentation • Female patient (P) aged 59 • Severe multiple sclerosis and incapable of informed decision making for 20 years • 10 years ago was placed in a nursing home for total nursing care • 5 years ago developed dysphagia and PEG tube was placed

34. Functional state • Bed bound with double incontinence • Conscious but not much more than that • Cannot speak more than the odd word • Disorientated for time, place and person • Recognises nobody, not even close family members

35. Presenting problem • PEG tube had ‘fallen out’ • The patient’s daughter believed that P had removed the tube • It is unlikely that the patient would have been capable of deliberately removing the tube • The tube had become dislodged in circumstances that, although unclear, were probably accidental

36. On examination • The patient opened her eyes to speech • She could obey one-step commands such as ‘stick your tongue out’ • She made occasional single word answers to questions. If asked how she was she would say ‘fine’ • There was marked spasticity in all four limbs

37. Hospital course • IV hydration was commenced • Family members were resistant to replacement of the PEG tube • Her daughter (D) said that 10 years previously her mother had stated that she did not want to be kept alive by machines • The patient’s brother said that 10 years previously P did not know what she was saying

38. Best interests? • 5 years ago, when the PEG was placed, the daughter consented to the intervention. She now wishes she could retract that consent. • D does not believe tube feeding is in her mother’s best interests. Her mother ‘has no quality of life, she has pain and suffering and does not want to be kept alive’.

39. Patient’s wishes? • P’s best friend (F) and close confidant said that, on learning of her illness, P had said that if she had to go to hospital, and if the time came when she could no longer recognise her daughters she did not want to be kept alive. She had said this to F frequently. • F had no doubt that P would now want to be allowed to die

40. Should the PEG tube be replaced? You decide

41. Autonomy • principle of self-determination • recognition of the patients rights Non-maleficence • Deliberate avoidance of harm Beneficence • Provides the patient with some benefit Justice • The fair and equitable provision of available medical resources to all

42. OK … so this is a REAL case Human Rights Act 1998 (Article 2) Everyone’s right to life shall be protected by law. In re: F [1990] In the case of an incompetent patient requiring an intervention the doctor may proceed if the intervention is in the best interests of the patient

43. Patient’s wishes? Is there a valid advance refusal? • This needs to be clear & referable to the particular circumstances • All the conversations • Occurred many yrs ago • None dealt specifically with feeding withdrawal • No one discussed the prospect of P starving to death over a two-week period • P’s comments were not a balanced decision taken after considering all relevant matters

44. Factors that influenced the outcome The patient had never addressed the choice between: • Death by starvation over two weeks, or • Remaining alive in no particular discomfort The court has never sanctioned withdrawing ANH from anybody other than those in a PVS

45. W Healthcare NHS Trust v H [2005] 1 WLR 834 • The law can only sanction withdrawal of ANH in non-vegetative states when the patient has clearly consented, or when their condition is unarguably intolerable • This patient is sufficiently aware to experience death by starvation • Therefore it is not possible to say that feeding would provide no benefit

46. Saved by Burke (appeal)? Three exceptions to providing ANH were articulated: • Refusal of treatment by a competent patient • When treatment is not considered to be in the best interests of an incompetent patient • When a patient is in a PVS

47. Hippocratic or Hypocritical? • The law & the BMA guidance relating to withholding & withdrawal of treatment & tube feeding are ethically incoherent • The intentional shortening of a patients life  Passive euthanasia (by omission)  Active euthanasia • Assisted suicide  Passive assisted suicide  Active assisted suicide

48. Autonomy • principle of self-determination • recognition of the patients rights Non-maleficence • Deliberate avoidance of harm Beneficence • Provides the patient with some benefit Justice • The fair and equitable provision of available medical resources to all