Treatment and care towards the end of life

1. Treatment and care towards the end of life Good practice in decision making

2. Not a statement of legal principle • Ethical dilemmas and uncertainties about the law • High quality treatment and dying with dignity • Clinically complex and emotionally distressing decisions*

3. Presumption in favour of prolonging life • No absolute obligation to prolong life irrespective of the consequences for the patient • Take account of up to date and authoritative clinical guidance*

4. Balance of benefits, burden and risks Antibiotics CPR Dialysis Mechanical ventilation Clinically assisted nutrition and hydration Not always limited to clinical considerations in a child* “Overall benefit”, “Best interests…”

5. “ Do these treatments prolong the dying process or cause the patient unnecessary distress?”

6. Other support • Consult with those close to the patient* • High quality treatment • Palliative care • Psychological, social and spiritual support

7. Clinical decision making • Focus must remain on the patient • Multi-disciplinary/ multi-agency • Communication and consultation • Consistent clear messages from different members of the health care team*

8. Clinical decision making • Must not allow emotional issues to override clinical judgement • Do not rely on personal views about quality of life of those with disabilities*

9. Clinical decision making • Difficult to estimate when patient approaching end of life • Treat pain, breathlessness, agitation • Keep nutrition and hydration status under review • Decision to withdraw or not start treatment is reviewed if clinical change

10. Advice or second opinion • Limited experience of condition • Symptom management • Serious difference of opinion between you and/or healthcare team

11. Advice or second opinion • Withdrawal of clinically assisted nutrition or hydration* Current evidence of benefits, burdens and risks not clear cut. Some people see nutrition …as part of the basic nurture of the patient that should almost always be provided

12. Advice: “experienced colleague outside the clinical team…may be by phone” • Second opinion: “senior clinician with experience of patients condition not directly involved in care…should be based on examination of the patient”

13. Resolving disagreements-parents • Consent from one parent sufficient but should encourage to reach concensus* • Independent advocate • Second opinion • Case conference • Local mediation services • …as a last resort seek legal advice…but for children “should be seen as a constructive way of thoroughly exploring the issues”*

14. Resolving disagreements-team • All above • Conscientious objection is allowable but “it is not acceptable to withdraw from a patient’s care if this would leave the patient or colleagues with nowhere to turn”

15. BAPM/ Nuffield Council of Bioethics 2007 The working party struggled, as have others, to define when the degree of suffering caused by continuing active treatment outweighs the benefits of the treatment to the baby For babies whose quality of life is what we would describe as intolerable, an insistence that their lives must always be preserved regardless of suffering, is inhumane and no possible benefit to them

16. Disability We find no morally relevant differences between disabled and able-bodied children and adults. Each must be given equal consideration. It is important that all those involved in critical care decisions, including especially parents, doctors and nurses, do not feel pressurised to allow babies to die because of a risk of disability

17. “Best interests” Involve parents and keep the baby central • Degree of pain, suffering and mental distress? • Benefits future child will get from treatment? • Support available? • How much longer will the baby survive?

18. Pain • If the intention is clearly to relieve pain and distress and the dosage provided is commensurate with that aim, the action will not be unlawful • Potentially life-shortening but pain relieving treatments are morally acceptable

19. Training • Train all professionals working in neonatal medicine in basic principles of palliative care • Medical and nursing schools should develop educational programmes in law and ethics relating to fetal and neonatal medicine

20. Other points • All NNU’s should have rapid access to clinical ethics committees • Avoid the courts • More support for families who care for disabled children/adults

21. Gestation criteria • <23 weeks • 23+0 to 23+6 weeks • 24+0 to 24+6 weeks • >25 weeks

22. RCPCH- May 2004 Witholding or Withdrawing Life Sustaining Treatment in Children: A Framework for Practice (under review)

23. Common and accepted practice….. when distress outweighs the benefits

24. Legal judgements • No obligation to give treatment which is futile and burdensome • Treatment goals may be changed • Feeding …may be withdrawn in patients in whom the vegetative state is thought to be permanent…legal advice should be taken. • Treatment…withdrawn if continuation is not in their “best interests”

25. Impairment and Disability(1991 Court of Appeal judgement) • Acceptable if “quality of life…intolerable to the child” • Recognition that “quality of life …considered intolerable to an able-bodied person would not necessarily be unacceptable to a child who has been born disabled”

26. Impairment and Disability • “Loss of awareness and an inability to interact is perhaps intolerable disability…spastic quadriplegia with very severe cognitive and sensory deficits might be one such condition…the burden is not only for the child but also the parents…” • An “intolerable disability” is “that which cannot be borne”

27. The 5 circumstances • Brain dead child • Permanent vegetative state • “No chance” situation • “No purpose” situation • “Unbearable” situation

28. Feeding • Particularly emotive for parents and staff and opinions vary • Can be accepted if it is well managed

29. Agreement • Unanimity…is not essential and perhaps unrealistic • Primary health care team • Clinical ethics committees

30. Summary • High quality treatment • Balance “overall benefit” and “best interests” • Review of all interventions including clinically assisted nutrition/hydration • Team decision with focus on the patient

31. Summary • Clinically and emotionally complex in children with other factors involved • Care with assessment of quality of life in disabled children • Mechanisms for resolving disagreement

32. Scenarios • Extreme preterm • Edwards syndrome • Severe asphyxia

33. Extreme prem Born at 24 weeks (dates accurate) following PROM for 2 weeks. Engaged committed parents who have refused to move to Plymouth following counselling on likely outcomes and concerns about disruption caused to their 2 yo child. They have specifically requested that there is minimal intervention at birth. Baby born in good condition, cries at birth, moving all limbs but then becomes apnoeic. Airway manoevres do not improve respiratory effort. Intubation is indicated. What do you do?

34. Congenital anomaly Baby born at term following uneventful pregnancy although evidence of IUGR. Parents refused investigation for this. Cried at birth, weight 1.98kgs, transferred to NNU. IV fluids when sugar 1.3. Morning ward round cons notes dysmorphic facial features. Rapid FISH test confirms trisomy 18. Parents informed very likely Edwards syndrome subsequently confirmed on karyotype. NG tube feeds not well tolerated with recurrent vomiting likely reflux. Rx anti-reflux medication. Intestinal obstruction excluded. Baby has not regained birth weight by 3 weeks old. Suggestion on ward round re gastrostomy/ fundoplication. What should you do?

35. Asphyxia Baby born in very poor condition following abruption. Cord pH 6.7. Requires intubation for poor respiratory effort and ongoing ventilation. In spite of total body cooling the CFM remains severely suppressed with a burst suppression pattern throughout. Successfully extubated on day 5 but remains very floppy with no gag reflex. MRI scan on day 7 confirms extensive cerebral injury to white matter but also extending into the cortex. There are on going apnoeas probably related to aspiration of mucous. Parents question whether we should be suctioning and providing supplemental oxygen. What do you do?