Artificial hydration at a child’s end of life

1. Artificial hydration at a child’s end of life Journal club sept 2012 Disclaimer: Whilst every effort has been made to ensure that the information in this presentation is accurate and referenced the author does not accept any responsibility for the use by any third parties.

2. Clinical context

3. Views of those present • How do you feel about stopping her feed? • How do you feel about stopping her fluid? • Do you think IV / Subcut fluids should be started? • Do you think her death was hastened / slowed by the decision taken? • How do you think the family felt? • How do you think the team felt? • What is the evidence ? • What is the legal and ethical framework?

5. Controversy over withholding medical nutrition and hydration at end of life • A child admitted to PICU is likely to receive fluids at end of life. • A child receiving palliative care at home may not. • The views of health care professionals, caregivers and patients differ in their views. • Families and care givers often want to hydrate patients – is this based on assumptions about medical benefits and harm prevention?

6. Why do we worry about lack of fluid at end of life? • Emotional / social context • Dehydration is uncomfortable • Dehydration causes secondary problems • Hydration is medically possible so it should be provided • Hydration may improve other symptoms at end of life • Perception of giving up • Need to ‘do something’

7. Worry 1: Dehydration is uncomfortable and withholding hydration increases suffering. • Palliative care professionals overwhelmingly report that dehydration at the end of life results in a peaceful, comfortable death. • WHY? • 1. Difference between the type of dehydration experienced by the person dying of an underlying illness. • 2. Beneficial physiologic sequelae of dehydration.

8. HYPONATRAEMIC DEHYDRATION & HYPERNATRAEMIC DEHYDRATION • - Can lead to headache, abdominal cramps, nausea and vomiting. • ISOTONIC DEHYDRATION:- • Gradual, concomitant loss of sodium and water that occurs as food and fluid intake reduces. • Thirst is generally mild • Most common complaint is dry mouth. • Other symptoms are not reported as neither hyper or hypo natraemia occurs.

9. BENEFITS OF ISOTONIC DEHYDRATION • Patients entering terminal dehydration seem to require less pain control than those who receive hydration. • Changes in metabolic state may contribute to decreased awareness. • Animal studies suggest that water deprivation results in higher levels of dynorphin, a potent opiate released by the hypothalamus • Rat studies suggest that an analgesic effect due to ketone production is experienced after 24 hours of food deprivation • Observation of fasting humans suggests that ketosis provides an anorexic effect; furthermore, feelings of well-being and euphoria have also been reported by fasting adults

10. WORRY 2: Dehydration causes biochemical abnormalities that cause discomfort. • Biochemical abnormalities occur whether patients receive hydration or not. • Studies in adults with abdominal cancer who did not receive hydration at the end of life rarely demonstrated hypernatraemia or hyperkalaema. • Urea and Creatinine increased at end of life regardless of whether IV hydration was provided. Morita T, Hyodo I, Yoshimi T, et al. Artificial hydration therapy, laboratory findings, and fluid balance in terminally ill patients with abdominal malignancies. J Pain Symptom Manage. 2006;31(2):130-139

11. Hydration is medically possible, so it should be provided. • Medically provided hydration is viewed in law and ethics as a medical treatment, which means that, like other medical treatments, it can be withheld or withdrawn if it does not provide the desired benefit, or if the treatment creates a “disproportionate burden.” • Treatments considered to be palliative on the other hand can not be withdrawn. • There is no ethical or legal distinction between witholding artificially provided hydration and withdrawing it after it has been begun. Andrews M, Marian M. Ethical framework for the registered dietitian in decisions regarding withholding/withdrawing medically assisted nutrition and hydration. J Am Diet Assoc. 2006;106(2):206-20

12. Hydration may help with symptom relief. • Hydration’s positive effects are limited. • We worry about dry mouth, thirst and mental status but studies show dehydration does not affect • - Fatigue • - Has less effect on delirium as end of life approaches • - Has no effect on delirium from organ dysfunction.

13. DRY MOUTH • Poor evidence that dry mouth is relieved by hydration. • Good mouth care is more effective. • Thirst is a non-specific indicator at end of life • Medication • Treatments • Mouth breathing • Stomatitis Dalal S, Del Fabbro E, Bruera E. Is there a role for hydration at the end of life? Curr Opin Support Palliat Care. 2009;3(1):72-7

14. BENEFITS OF HYDRATION • Reduced hallucinations, myoclonus, and sedation in a group of terminally ill cancer patients [15]. • Opioid-induced neurotoxicity, a constellation of symptoms including sedation, mental status changes, and myoclonus caused by the accumulation of products of opioid metabolism, may be reversible with hydration, although data are not conclusive [20]. 15. Bruera E, Sala R, Rico MA, et al. Effects of parenteral hydration in terminally ill cancer patients: a preliminary study. J Clin Oncol. 2005;23(10):2366-2371. 20. Good P, Cavenagh J, Mather M, Ravenscroft P. Medically assisted hydration for adult palliative care patients (review). Cochrane Database Syst Rev. 2008;(4)

15. Burdens of Treatment • Fluid retention (peripheral oedema, ascites, pleural effusion) • Increased respiratory secretions, • Increased gastric secretions – nausea and vomiting. • Lack of mobility • Care considerations ( nappys, bed wetting) • Possible need for catheters • Pain at insertion site • Barriers to physical closeness • Place of care

16. The social context • The emotional significance • Offering food and drink is a sign of love and caring • Feeding is essential to parenthood • Inability to eat can be perceived as ineffective parenting , taking away a significant way for the caregiver to show love. • Many hours are taken in feeding a child with disability. • Routines can revolve around feeds. • “would get better if he would just eat”

17. Determining Appropriate Treatment • Need to Balance • - Emotional responses • - Child and family’s goals • - Medical reality of the child’s condition. • Weigh risks and benefits of reasonable treatment with the comfort and interest of the child.

18. Caution • Extrapolation of studies • - mostly older cancer patients • Children are at higher risk for fluid deficits • increased total body water • increased insensible losses • Better renal function • Better thirst mechanism

19. Current evidence suggests that hydration does not improve overall quality of life in patients within days to weeks of death, but may be some benefit for those patients with longer life expectancy

20. Comfort versus Distress • Primary goal always comfort! • Highly individualized • “One size fits all” care planning won’t work • End-of-life to “imminent death” – broad category • What brings comfort in early stage will bring distress is later stage. • Be aware of ongoing changes

21. A possible approach • Help families to understand that the gradual decrease in oral intake is a natural part of the dying process. • Physical examination should consider - signs of fluid deficit • Etiology • Assessment of the effect on the child’s QOL • Therapy decisions must be individualized for the child’s comfort • Discussions focused on realistic expectations. • Team consensus and understanding before presenting options to the family

22. Inform families:- • Hydration may help to ameliorate some neurologic symptoms including delirium, mental state changes and opioid induced neurotoxicity • BUT • Not likely to improve dry mouth or thirst ( easily managed with other measures) • Discuss burdens of hydration therapy

23. IF Fluids are felt appropriate • Clear definitions of • Goals of treatment • Length of trial • Criteria for withdrawing • Lower volumes are associated with fewer deleterious efficets • 50-75% maintenance is suggested as a starting point. • Advise the family that hydration can be withdrawn or withheld if desired or no benefit is observed. • Always stressing the continued support and appropriate palliative care.

24. SUMMARY: Artificial nutrition and hydration • We have an instinctual need to feed dependent children and the prospect of withholding food and water can evoke strong emotions - from family and clinicians • Artificial nutrition and hydration are invasive interventions which do not appear to lengthen survival and may cause additional suffering by: • Adding discomfort and bodily invasion • Limiting the ability of patients to be held and comforted • Side effects including infection, obstruction, metabolic derangements,nausea, vomiting, and diarrhea • Limiting food and water during the final stages of life may: • Be more comfortable for the patient • Decrease respiratory secretions, coughing, and GI symptoms • Preventing the hunger sensation associated with partial feedings