1. To do or not to do? Investigations and Artificial Hydration in Palliative Care Caroline Hockett Dr Sarah Yardley Camden, Islington ELiPSE and UCLH & HCA Palliative Care Service, Central and North West London NHS Foundation Trust (CNWL)

2. Priorities for Care When it is thought that a person may die within the next few days or hours it is essential to: RECOGNISE - patient may be in last days of life COMMUNICATE - sensitive communication to family/carers INVOLVE - dying person and those important to them SUPPORT - ensure needs of patients/carers are respected PLAN & DO - individual plan of care is drawn up and delivered with compassion

3. 3 Contrasting Dying Trajectories for (A) Obvious late decline of cancer; (B) End stage heart or lung disease with episodic crises; and (C) Dwindling course of dementia

4. What to investigate and when? What are we trying to achieve? –Best clinical estimate of prognosis and trajectory –Patient priorities? What can be done where? Will investigations potentially change: –Symptom control options / recommendations? E.g. path # or new disease suitable for XRT, Prescribing approach –Patient choices? Is there an acute/step change? –What is the differential? Might there be a reversible cause? Medication toxicity or side effects Renal failure Dehydration Infection Have previous attempts to intervene been successful? –Hypercalcaemia –Blood Transfusions

5. Artifical Hydration Hydration and nutrition a key issue for those critical of the application of the LCP & in the new NICE guidelines Perception of patients and family members that hydration offers –Hope: life sustaining, healing –Comfort: reducing pain, enhancing medications, nourishing, improving quality of life But can it prolong suffering? Cohen et al, the meaning of parenteral hydration to family caregivers and patients, 2012

6. The debate… For artificial hydration Provides a basic human need Relieves thirst Prevents/treats uncomfortable symptoms- confusion, agitation Does not prolong life to any meaningful degree Provides minimum standards of care Prolonged dying phase (eg stroke) – can give intermittently according to need Against artificial hydration Interferes with acceptance of terminal condition Prolongs suffering and the dying process Artificial hydration is intrusive and possibly painful Less oedema, pulmonary secretions, congestion, vomiting, and reduced need to pass urine Decreased levels of consciousness and suffering through production of natural endorphins Can reassess need

7. Knowns & unknowns RCP Oral feeding difficulties and dilemmas 2010, pp16-17 –Hydration without nutrition leads to death in 9-10 weeks in healthy, hydrated people –Removal of hydration may shorten this to 3 to 14 days “giving hydration… may prolong dying” “lack of hydration… accelerated the dying process” Cochrane review: Medically assisted hydration for adult palliative care patients (2008, updated 2011) –5 studies (2 RCTs) –None looked at survival –1 study: sedation and myoclonus improved No significant difference in all other outcomes in all other studies (Sedation, myoclonus, fatigue, hallucinations, MMSE, thirst, nausea, delirium, anguish, agitation, bedsores, cognition) Bruera et al, JCO 2013: multicenter, double-blinded, placebo- controlled randomized trial – hydration vs placebo. –n=129 –Intervention: 1L / day –All subjects were dehydrated Did not improve symptoms, quality of life or survival

8. The law Basic care includes warmth, shelter, pain and symptom relief, hygiene measures and the offer of oral hydration and nutrition. It should always be provided unless actively resisted by the patient Hydration provided by a tube or drip is regarded in law as a medical treatment

9. GMC guidance(Treatment and care towards the end of life, 2010) Consider the views of the patient and of those close to them Explain the issues Ensure all understand that clinically assisted hydration will always be offered if of benefit, and that if not of benefit, the patient will continue to receive high quality care If a patient is expected to die within hours or days, and you consider that the burdens of clinically assisted hydration outweigh the benefits, it will not usually be appropriate to start or continue treatment If a patient has previously requested that nutrition or hydration be provided until their death, or those close to the patient are sure that this is what the patient wanted, the patient’s wishes must be given weight and, when the benefits, burdens and risks are finely balanced, will usually be the deciding factor

10. How much is enough? NICE Guidance on IV therapy for adults If patients need IV fluids for routine maintenance alone, restrict the initial prescription to 25–30 ml/kg/day of fluid 40kg adult: 1-1.2 L/day 70kg adult: 1.75-2.1 L/day (NICE, Guidance on IV therapy for adults, 2013)

11. Recommendations for the very end of life Lack of interest in food is a poor prognostic indicator In the dying phase, desire for food/drink lessens Good mouth care most appropriate intervention Review NGT/PEG feeding and hydration Fluids may only exacerbate oedema and increase secretions

12. References Bruera E, Hui D, et al, “Parenteral hydration in patients with advanced cancer: a multicenter, double-blinded, placebo-controlled randomized trial” (JCO, Jan 2013, 31;1:111-118) Cohen M, Torres-Vigil I, et al, “The meaning of parenteral hydration to family caregivers and patients waith advanced cancer receiving hospice care” (JPSM, May 2012, 43;5:855-865) Davies A, “Clinically Assisted Hydration at the end of life” Presentation at the Guildford Advanced Pain and Symptom Management Course (Manchester, 2013) The General Medical Council, Treatment and care towards the end of life: good practice in decision making. Ethical Guidance I. 978-0-901458-46-9 (London, General Medical Council, 2010) http://www.gmc-uk.org/guidance/ethical_guidance/end_of_life_care.asp Good P, Cavenagh J, et al "Medically assisted hydration for adult palliative care patients" Cochrane Database of Systematic Reviews (2008b) http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD006273.pub2/pdf/standard Neuberger J, Guthrie C, et al, More care, less pathway. A review of the Liverpool Care Pathway, (London, DoH, 2013) NICE Guideline, Intravenous fluid therapy in adults in hospital, draft for consultation, (London, NICE, 2013) Royal College of Physicians and British Society of Gastroenterology, Oral feeding difficulties and dilemmas: A guide to practical care, particularly towards the end of life (London, Royal College of Physicians, 2010) Parry R, Seymour J, et al, Evidence briefing: pathways for the dying phase in end of life care, (National End of Life Care Programme, 2013)

13. Case discussion Current or previous challenging cases? SC fluids in the community –Need to check which pharmacies stock what / may need to order in: boxes of 10 –V rare more than 1-2l over 24 hours –DNs – need to order equipment and have MAR chart / Px completed by GP –Daily monitoring for side effects