1. NPPG PICU SIG Study Day Recap Law and Ethics 22nd July 2013 Stephen Morris NPPG Conference - London 8th November 2013

3. Aims and Objectives AIMS –To inform and update pharmacists on the current guidance around withholding and withdrawing life-prolonging treatment –To recap and develop our understanding of the evidence and practice basis for hormonal resuscitation of potential heart-beating organ donors –To introduce the concept of “Donation after Cardiac Death” and how medicines may affect this –To outline a regional strategy for provision of palliative care to children in the community OBJECTIVES –Understand and the current legal framework concerning withdrawing care, including the application of “Limitation of Treatment Agreements” and “DNR Orders” –Be able to differentiate between escalating therapy and routine care –Discuss and critique the evidence base for Hormonal Resuscitation methods –Understand how medicines may impact on Donation after Cardiac Death –Understand the principles of palliative care and symptom control –Consider how to move forward with palliative care at home as an option for PICU patients at the end of their treatment course.

4. Futility and Withdrawing Care Medical Ethics –Four principles 1.Respect for autonomy –Patients, parents or carers should make own decision –To what extent do parents/carers/patients make informed decisions –Parents may be over-ridden as surrogate decision makers by courts in interests of protecting child 2.Principle of Non-maliference 1.E.g. opioids may treat pain but do they hasten death? 3.Principle of Beneficence –Varying views on what constitutes benefit 4.Principle of Justice Activities : –Decide who to admit to PICU from selection of scenarios Discussion : –To what extent practice under law (case law) and follow guidance –What happens with older patients Reference Brierley J., Brain Stem Death & Management of the Donor GOSH NHS Trust, London 2007

5. RCPCH Guidance Recognised five situations of withdrawing care: –Brain dead – as specified in other guidelines –Permanent vegetative state – no reaction to outside world, entirely dependant on carers –No chance – treatment delays death without improvement in suffering –No purpose – may survive but treatment may leave lasting physical/mental scars –Unbearable – progressive or irreversible illness that child and/or parents believe treating further is too much to bear Reference Royal College of Paediatrics and Child Health, Withholding or Withdrawing Life Sustaining Treatment in Children: A Framework for Practice 2 nd Edition, May 2004

6. Developments in Organ Donation 10 years prior to 2008 very little change in deceased donor number Following Spanish model of transplantation April 2013 achieved 50% increase in donor numbers from 2008 Specialist Nurses in Organ Donation (SNOD) –12 regions –Identification and assessment –Documenting consent –Logistics, liaise with retrieval teams –Post-donation care Donation of Brain Stem / Cardiac Death Better techniques to improve graft survival Further Reading NHSBT – Role of the Specialist nurse in organ donation http://www.odt.nhs.uk/donation/deceased-donation/organ-donation-services/role-of-specialist-nurse/

7. Supporting Donation - DBD Recognised treatments to solely improve graft function (not actively treating patient, but following their wishes) Cardiovascular Support –Anti-arrhythmics –Short acting betablockers for sympathetic storm (e.g. IV Esmolol) –Fluids, inotropes, vasodilators to maintain CVP 6-10 mmHg Respiratory Support Hormonal Support –Insulin –Vasopressin –Lio-thyronine Reference Brierley J., Brain Stem Death & Management of the Donor GOSH NHS Trust, London 2007 John D. Rosendale,et al. Hormonal resuscitation yields more transplanted hearts, with improved early function. Transplantation Vol. 75, 1336–1341, No. 8, April 27, 2003

8. Care at the End of Life: What gets in the way? Statistics: –>98% of neonates that die will be in hospital –75% of children that die will be in hospital Challenges: –Not diagnosing death –Not having the skills to talk to families about death and support them in planning –Not having the right drug and skills to use them Right drugs Right doses Right method of delivery Right plan for review Right prescription! Are we here? Or are we here?

9. Rapid discharge pathway for end of life care Tool to help transfer a child to the preferred place of death Includes all areas needing to be considered Symptom control key component –Anticipatory prescribing of drugs likely to be required –Identification of who will prescribe drugs –Where they will come from –Who will administer them –And how –And what happens if the child doesn’t die

10. Summary / Reflections Withdrawing care is a very sensitive situation both legally and ethically –Collective approach of MDT in decision making, discussions –Important to convey same message –Professionalism The donor side of the story –Recognising as a society –Improving Viability of Donor Organ –Respecting wishes of donor Importance of planning around palliative discharges –Experience with adults useful Thank You!!