1. Dignity and Symptom Control Rachel Sheils GSFCH Conference 10.7.2009

2. Dignity state worthy of esteem and respect, especially humanness

3. Ethical principles Autonomy Beneficence Non-malfeasance Social justice

4. Symptoms in the last days Asthenia (debility) Anorexia Dry mouth Dyspnoea Confusion Noisy respiratory tract secretions Pain Restlessness / agitation Nausea 82% 80% 70% 17 - 47% 56% 46% 43% 14%

5. …worthy of esteem and respect… What makes us feel worthy of respect? What stops us from feeling worthy of respect?

6. ...especially humanness… What makes us feel human? What stops us from feeling human?

7. Case 1- Autonomy PP 60 years old Motor neurone disease Rapid deterioration Living alone at home

8. Independent –Maintain sitting posture Dependent – 8 visits/day –All cares –All mobility –Communication – scanning light writer –Oral intake – sips of cola

9. Wants to stay at home until the end – at all costs Has the mental capacity to make this decision Finally agrees to be admitted when attends day hospice and appears to be dying

10. Initially rallied Improved pain Discharge planning – patient insistent on going home when care arranged Died knowing we were trying to get her home

11. Respected autonomy Would most of us want to be at home despite –faecal soiling –Slumping in chair if falls forwards

12. Case 2 Symptoms vs Side Effects 66 year old woman Ovarian cancer Widespread disease in abdomen No more surgery / chemotherapy possible

13. Vomiting Abdominal distension Constipation Bowel obstruction

14. Tried various treatments –Dexamethasone 8mg –Metoclopramide 60mg in 24 hrs in syringe driver –Sodium docusate –Granisetron –Not much better

15. Generally deterriorating –Discussions about what was happening Vomiting once every 24 hours – BIG volume –Tried levomepromazine –Then cyclizine –Helped nausea but not vomiting –made her sleepy

16. Pt decided to withhold levomepromazine until last few days Vomiting but awake

17. Who knows what would make us feel more human –Vomiting, nauseated but alert –Sleepy, less aware of vomiting

18. Anti-emetics Acid- lansoprazole etc Gastric stasis- metoclopramide/domperidone Chemical- cyclizine, haloperidol levomepromazine, granisetron / ondnsetron Cerebral- steroids, cyclizine, granisetron Bowel- cyclizine OR metoclopramide, granisetron, steroids Environment Constipation

19. Case 3 The pain is what the patient says it is 70 year old lady Breast cancer Severe lymphoedema in left arm causing pain

20. Learning disability Bipolar disorder Lived with / dependent on elderly sister Admitted to the hospice for pain control Zomorph 10mg BD Mirtazepine, Lithium, Sodium Valproate

21. Escalating doses of Oxynorm – 80mg BD –Didn’t reduce PRN morphine use Crying out in pain Very anxious When nurse came – anxiety gone, still in pain –“Is this really pain or is it anxiety, a cry for help and attention?”

22. Noticed she had a history of Crohn’s disease and bowel resection –IS SHE ABSORBING THESE ORAL DRUGS Started a syringe driver with oxynorm Eventually converted to a patch

23. Pain settled Transferred to a nursing home

24. How would it feel I was vulnerable, and someone didn’t believe that: –I was in pain –What they were doing was helping the pain

25. The drugs don’t work Is the patient taking the drugs? Are they keeping them down? Are they absorbing them?

26. Is the dose high enough? Is it the right pain killer? Syringe driver –Is it running behind? –If so, why?

27. Opioids Different opioids have different strengths Variety of routes oral, subcutaneous, transdermal, buccal, sublingual, ??? Nebulised

28. Dignity We are all human We are all different Dignity will be achieved for each individual in different ways Listen Patient’s priority should be ours Side effects vs benefits

29. Any questions?