1. WESTERN AREA GUIDANCE DIABETES AND ADVANCED ILLNESS

2. AIMS To optimise benefits and minimise burden of diabetes related care during the terminal phase of life. To adapt treatment continually to reflect physiological changes and increasing frailty. To stress the core importance of individualised person centred approach To involve the patient and/or carers (often experts in their own diabetes) in clinical decision making where possible.

3. Guidance adapted from Diabetes UK by: Dr Neil Black, Consultant Endocrinologist and Clinical Lead Diabetes, WHSCT Sr Lisa King, Diabetes Specialist Nurse Lead, AAH Western Trust Primary Palliative Care Team Foyle Hospice Medical Team

4. LOCAL ADVICE Northern Sector Hospital Diabetes Team: Name Phone Email Community Diabetes Team Name Phone Email

5. LOCAL ADVICE Southern Sector Hospital Diabetes Team: Name Phone Email Community Diabetes Team Name Phone Email

6. ISSUES OF IMPORTANCE: 1. Illness related symptoms are increasingly prevalent during the last year of life: Changes in appetite/food intake Cachexia/ weight loss Nausea/ Vomiting Diarrhoea Dehydration Electrolyte imbalances Frequent infections Effect of pain on glycaemic levels Implications for diabetic control; Consider need to monitor carefully and adjust treatment.

7. ISSUES OF IMPORTANCE : 2 Iatrogenic Problems also prevalent: Drug induced hyperglycaemia (e.g. steroids) Drug related hypoglycaemia (e.g. some chemotherapies) Other drug related side effects ( e.g. GI Upset: Nausea, diarrhoea:- metformin) Implications for control and treatment: need to monitor, adjust treatment

8. GLUCOSE TARGETS IN END OF LIFE CARE (DIABETES UK) No pre meal glucose lower than 6 mmol/l. No pre meal glucose higher than 15 mmol/l. Main issue is quality of life; comfort. Note: less than 6mmol/l increases risk of hypoglycaemia Greater than 15mmol/l can lead to symptomatic hyperglycaemia. Individual assessment of stability and risk of DKA/ hyperosmolar hyperglycaemia.

9. GLUCOSE TARGETS IN END OF LIFE CARE Consider need to monitor and frequency of monitoring on an Individual Basis. Hypoglycaemia generally a more significant risk than hyperglycaemia (appetite loss etc.) so target pre-meal levels need to be higher. Adjust targets further upwards if: patient having hypoglycaemia before meals despite snacks Long gaps between meals due to anorexia.

10. REVIEW OF MEDICATIONS: STAGE 1 (PROGNOSIS OF ?A YEAR OR MORE) Review need for and dose of: ACE Inhibitor/ ARB (dose reductions commonly needed) Aspirin (Increased risk GI effects; risk may outweigh benefit) Statins (benefit questionable; side effects increase if liver or renal function affected) Watch for weight loss and review blood glucose targets and treatment.

11. REVIEW OF MEDICATIONS; STAGE 2 (PROGNOSIS OF ?2-3 MONTHS) Above stage plus: Simplify all treatment (Insulin alone simpler than insulin and tablets) Flexibility needed if physical changes progressing. Once daily insulin simpler than BD (75% of total previous dose), especially where weight or appetite reducing. Side effects of oral medications heightened. ? Monitor renal function if on OHAs (esp metformin).

12. REVIEW OF MEDICATIONS; STAGE 3 (PROGNOSIS OF 2-3 WEEKS) Above stages plus: Review and consider relaxation of glucose targets. May need to intensify frequency of monitoring for insulin users/ relax frequency for stable type 2. Well being, appetite, intake can vary from day to day.

13. STAGE 4; LAST DAYS OF LIFE Diabetes UK End of life care guidance. Individual. Withdraw or simplify treatment where possible. Minimise monitoring as much as possible.

14. DIABETES UK: DEFINING PRINCIPLES OF END OF LIFE CARE IN DIABETES. Avoidance of foot complications in frail, bed-bound patients with diabetes Avoidance of symptomatic clinical dehydration Provision of an appropriate level of intervention according to stage of illness, symptom profile, and respect for dignity Supporting and maintaining the empowerment of the individual patient(in their diabetes self- management) and carers to the last possible stage

15. GENERAL PRINCIPLES: ORAL HYPOGLYCAEMIC AGENTS Role of dietitian very important: may need to rely on sugary or high calorie foods. Avoid long acting SUs (risk hypoglycaemia)- Gliclazide MR, glibenclamide, Glimepiride Consider change from OHAs to low dose insulin to allow flexibility and minimise OHA related side effects Review Metformin ( large tablets, hard to swallow, cause GI upset++, renal function monitoring.) Review GLP-1 receptor agonist (nausea, risk hypoglycaemia, risk pancreatitis.) Treat pain effectively.

16. PARTICULAR RISK FACTORS Poor/erratic appetite Deteriorating renal function Liver disease/carcinoma Weight loss.

17. ROLE OF DIABETES SPECIALIST TEAM; REFER WHEN: 1. Failure to control distressing symptoms of hyperglycaemia 2. Where further management requires complex treatment decision-making, e.g. commencing steroids, changing an insulin regime 3. In the presence of marked dehydration or infection failing to respond to treatment when diabetes-related emergencies supervene such as hyperosmolar hyperglycaemia state 4. When withdrawal of glucose-lowering therapies including insulin are being considered. 5. In the face of marked patient or carer anxiety

18. WITHDRAWAL OF TREATMENT IN DIABETES: CONSIDER WHEN: When the patient with diabetes is entering the terminal phase of life Where frequent treatment-related hypoglycaemia is causing distress and significant management difficulties Where continued treatment with insulin poses an unacceptable risk of hypoglycaemia or where the benefits of stricter glucose control cannot be justified Where continued use of blood pressure or lipid lowering therapy cannot be justified on health benefit considerations Where continued food or fluids is not the choice of the patient

19. SUMMARY; GUIDING PRINCIPLES Simplify treatment as far as possible Minimise side effects of treatment. Assess individual risk of instability (appetite, weight loss, renal/liver function, polypharmacy); consider replacing OHAs with low dose insulin if risks high. Steroids. Individual management plan during days of treatment. Role of patients and carers remains central. Assess wishes; shared/planned decision making.

20. USEFUL RESOURCES Presentation based on Diabetes UK End of Life Care Strategy July 2012. http://www.diabetes.org.uk/upload/Position%20statements/End%20of% 20Life%20Diabetes%20Care%20Stategy.pdf See also: www.book.pallcare.info (Palliative Care Adult Network Guidelines)