What is Quality of Life?

1. What is Quality of Life?

2. What is quality of life? • WHO definition of palliative care • Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated withlife-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

3. What is quality of life?

4. Enhanced by Caring attitude of staff Family visits Physical environment Maintaining control Feeling safe/ not alone Art sessions Smoking Diminished by Lost independence Lost activities Pain/ fear of pain Feeling a burden Quality of life is…

5. Enhanced by Caring attitude of staff Family visits Physical environment Maintaining control Feeling safe/ not alone Art sessions Smoking Diminished by Lost independence Lost activities Pain/ fear of pain Feeling a burden Quality of life is…

6. Enhanced by Caring attitude of staff Family visits Physical environment Maintaining control Feeling safe/ not alone Art sessions Smoking Diminished by Lost independence Lost activities Pain/ fear of pain Feeling a burden Quality of life is…

7. Enhanced by Caring attitude of staff Family visits Physical environment Maintaining control Feeling safe/ not alone Art sessions Smoking Diminished by Lost independence Lost activities Pain/ fear of pain Feeling a burden Quality of life is…

8. A story

9. Male • Born 1960 • Mild learning difficulties but otherwise well • Farm labourer • Enjoyed gardening and tapestry • Stayed with his mother

10. March 1999 Collapse

11. March 1999 Collapse EEG: left fronto-temporal abnormality CT head: 6x3cm left sided mixed cystic/ solid mass

12. March 1999 Collapse EEG: left fronto-temporal abnormality CT head: 6x3cm left sided mixed cystic/ solid mass Craniotomy Grade III anaplastc astrocytoma Cranial radiotherapy Dexamethasone Carbamazapine Diclofenac

13. June 1999 Left sided headache CT head: extensive persistent tumour “fairly rapid decline” Dexamethasone Carbamazapine Ibuprofen Coproxamol

14. Nov 1999 – Jan 2005 Headaches Seizures But no physical or cognitive decline CT head: no significant changes Dexamethasone Carbamazapine Valproate Lamotrigine Phenytoin Amitriptyline (Morphine) (Fentanyl)

15. June 2005 Headache Seizures Dysphasia CT head: Large recurrence Burr hole + drainage Lamotrigine Phenobarbitone Phenytoin 2 cycles CCNU

16. November 2005 Headache Seizures Dysphasia CT head: Large recurrence Craniotomy + debulking Grade II astrocytoma Lamotrigine Phenobarbitone Phenytoin Temozolamide

17. Jun 2006 – May 2010 Headaches ++ Seizures CT head: improvement

18. Jun 2006 – May 2010 Headaches ++ Seizures Neuropathic Migranous Trigeminal autonomic encephalopathy Seizure related Cluster Medication overuse Lamotrogine Phenytoin Phenobarbitone Amitriptylline Diazepam Tramadol Morphine Oxycodone Hydromorphone Fentanyl Pregabalin Ibuprofen Paracetamol Verapamil various –triptans Pizotifen

19. August 2010 • Headache • Hemiparesis • Dysphasia • CT + MR head: large mass

20. August 2010 • Headache • Hemiparesis • Dysphasia • CT + MR head: large mass

21. September 2010 Transferred to Roxburghe Headache ++ Mild dysphasia Ongoing seizures Hydromorphone Dexamethasone Amitriptyline Ibuprofen Paracetamol Pregabalin Verapamil Lamotrigine Phenytoin Phenobarbitone

22. September 2010 Transferred to Roxburghe Headache ++ Mild dysphasia Ongoing seizures Not dying! Hydromorphone Dexamethasone Amitriptyline Ibuprofen Paracetamol Pregabalin Verapamil Lamotrigine Phenytoin Phenobarbitone

24. Beatriz Milhazes

27. What is quality of life?

28. What is quality of life? • ‘Calman gap’ • Calman KC. Quality of life in cancer patients: an hypothesis. Journal of Medical Ethics 1984;10:124-127 • cf. control theory, stress response theory, response shift…

29. Response shift

30. Response shift Make better

31. Response shift Make better 10 1 Recalibrate 0 0

32. Response shift Make better Recalibrate Reprioritise

33. Response shift Make better Recalibrate Reprioritise Reconceptualise

34. Might explain • Odd iQoL results in trials

35. Might explain • Odd iQoL results in trials • How QoL in dying patients can improve

36. Might explain • Odd iQoL results in trials • How QoL in dying patients can improve • Why QoL sometimes doesn’t improve even when patients get ‘better’

37. Might explain • Odd iQoL results in trials • How QoL in dying patients can improve • Why QoL sometimes doesn’t improve even when patients get ‘better’ • Why focussing on illness and lost function worsens QoL (look at HR QoL measures)

38. Might explain • Odd iQoL results in trials • How QoL in dying patients can improve • Why QoL sometimes doesn’t improve even when patients get ‘better’ • Why focussing on illness and lost function worsens QoL (look at HR QoL measures) • Why breaking bad news can improve QoL

39. Response shift Make better Recalibrate Reprioritise Reconceptualise

40. Roxburghe in-patient • Sept – Nov 2010 • Feb – May 2011 • Aug – Sept 2011 • Died at home Sept 2011