1. FACET - European Journal of Cancer Care July 2006 slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer Booth, S. 1 Slide One *Click on View; Notes Page for explanatory notes Managing breathlessness Breathlessness is such a common problem that it requires all of us to be able to begin to start treating it

2. FACET - European Journal of Cancer Care July 2006 slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) Slide Two *Click on View; Notes Page for explanatory notes Managing breathlessness must be done systematically. There are three main aspects of this: 1.Symptom management 1.Managing chronicity 2.Managing end of life

3. FACET - European Journal of Cancer Care July 2006 slides available at: www.blackwellpublishing.com/journals/ecc Slide Three *Click on View; Notes Page for explanatory notes The genesis of dyspnoea and its relationship to respiratory control A proposed conceptual model by Adams & Stulbarg (1991) Palliative care for intractable breathlessness in cancer (continued)

4. FACET - European Journal of Cancer Care July 2006 slides available at: www.blackwellpublishing.com/journals/ecc Slide Four *Click on View; Notes Page for explanatory notes Palliative care for intractable breathlessness in cancer (continued) Mr Orange Mesothelioma chest and abdomen Naval architect, 67 years Illness shadowed him for years Diagnosed 6 months before Pain was prominent symptom Change in 6 months horrifying Distraught wife and daughter

5. FACET - European Journal of Cancer Care July 2006 slides available at: www.blackwellpublishing.com/journals/ecc Slide Five *Click on View; Notes Page for explanatory notes Palliative care for intractable breathlessness in cancer (continued) Managing breathlessness 1.Non-pharmacological measures 2.Opioids 3.Oxygen 4.Manage other symptoms 5.Remember the carers!

6. FACET - European Journal of Cancer Care July 2006 Slide Six *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) Non-pharmacological approaches There are a huge range of approaches to choose from and it must ideally be something that the patient can learn quite quickly and adapt to. More than one technique is needed.

7. FACET - European Journal of Cancer Care July 2006 Slide Seven *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) Non-pharmacological approaches (1) Using a fan

8. FACET - European Journal of Cancer Care July 2006 Slide Eight *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) Non-pharmacological approaches (2) Exercise (a good evidence base)

9. FACET - European Journal of Cancer Care July 2006 Slide Nine *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) Non-pharmacological approaches (3) Education and information Pacing

10. FACET - European Journal of Cancer Care July 2006 Slide Ten *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) Non-pharmacological approaches (4) Supporting family relationships Promoting wellbeing Rituals for crises

11. FACET - European Journal of Cancer Care July 2006 Slide Eleven *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) Impact of a breathlessness service Accentuate what can be done rather than dwell on losses Expert management of a symptom, often unrecognised by friends and family Support for carers Education and information Individual exercise

12. FACET - European Journal of Cancer Care July 2006 Slide Twelve *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) Opioids Use them for breathlessness at rest Use them at the end of life Consider them in anyone with severe shortness of breath

13. FACET - European Journal of Cancer Care July 2006 Slide Thirteen *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) Starting morphine for breathlessnes For example: Mr Orange 1.On 100mg MST bd 2.Use normal release morphine as required 3.Consider alternative route 4.Consider adding benzodiazepine

14. FACET - European Journal of Cancer Care July 2006 Slide Fourteen *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) What about benzodiazepines? Little evidence Rather more evidence for major tranquillisers Preferable to achieve anxiety- reduction by non- pharmacological means except at the end of life Subcutaneous opioid and benzodiazepine in severe breathlessness

15. FACET - European Journal of Cancer Care July 2006 Slide Fifteen *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) Oxygen for chronic breathlessness – individual assessment is key Some evidence in non-malignant disease – related to desaturation on exercise and hypoxia at rest Very little evidence in cancer – use according to clinical benefit in an individual Use the fan first Booth et al (2004)

16. FACET - European Journal of Cancer Care July 2006 Slide Sixteen *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) Positive psychology Wellbeing or happiness is a state in which individuals have engagement with life, a sense of purpose and feel pleasure Seligmann (2003)

17. FACET - European Journal of Cancer Care July 2006 Slide Seventeen *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) Positive psychology Authentic Happiness (Seligmann, 2003) http://www.authentichappiness.org

18. FACET - European Journal of Cancer Care July 2006 Slide Eighteen *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) End of life planning When? With whom? Where? How?

19. FACET - European Journal of Cancer Care July 2006 Slide Nineteen *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) Consensus on research methods – more work needed! 1.Qualitative and quantitative assessment are both needed to capture the experience of breathlessness 2.10% change in VAS score or 1 point in Borg may be called a significant clinical change in research 3.We do need to measure physiological parameters if we are to make progress 4.Many breathlessness tools but none suitable for all patient groups

20. FACET - European Journal of Cancer Care July 2006 Slide Twenty *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) Summary 1.Provide a fan 2.Help patients to remain as active as possible 3.Get the most relevant specialist help needed if you are not able to deal with the problem yourself 4.Most importantly, give the patients and relatives the support they need 5.Say if you do not feel able to manage breathlessness yourself, that there are ways of helping the symptom beyond what you have been able to do initially

21. FACET - European Journal of Cancer Care July 2006 Slide Twenty One *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) References and further reading Adams L. & Stulbarg M. (1991) Manifestations of Respiratory Disease: Dyspnea In: Textbook of respiratory disease (eds Murray J. & Nadel J.) 3 rd edn. WM Saunders, Philadelphia, PA, USA. Beach D. and Schwartzstein R.M. (2006) The genesis of breathlessness - what do we understand? In: Dyspnoea in advanced disease: a guide to clinical management (eds Booth & Dudgeon). Oxford University Press, Oxford, UK Booth S. (2006) Improving Research Methods in Breathlessness: A meeting convened by the MRC Clinical Trials Unit and The Cicely Saunders Foundation Palliative Medicine, 20, 219 - 220. Booth S., Silvester S. & Todd C. (2003) Breathlessness in cancer and chronic obstructive pulmonary disease: using a qualitative approach to describe the experience of patients and carers. Palliative and Supportive Care. 1, 337-44.

22. FACET - European Journal of Cancer Care July 2006 Slide Twenty Two *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) Booth S. & Wade R. (2003) Oxygen or air for Palliation of Breathlessness in Advanced Cancer. Journal of the Royal Society of Medicine. 96, 215-218. Booth S., Wade R., Johnson M., Kite S., Swannick M., Anderson H. (2004) The use of oxygen in the palliation of breathlessness. A report of the expert working group of the Scientific Committee of the Association of Palliative Medicine. Respir Med 98, 66-77. Carrieri-Kohlman, V. (2006) Non-pharmacological approaches In: Dyspnoea in advanced disease: a guide to clinical management (eds Booth & Dudgeon). Oxford University Press, Oxford, UK. Huppert F.A., Baylis N. and Keverne B. (2005) The Science of Wellbeing. Oxford University Press, New York, USA. Jennings A.L., Davies A.N., Higgins J.P., Gibbs J.S., Broadley K.E. (2002) A systematic review of the use of opioids in the management of dyspnoea. Thorax 57, 939-44.

23. FACET - European Journal of Cancer Care July 2006 Slide Twenty Three *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Palliative care for intractable breathlessness in cancer (continued) Johnson M.J., McDonagh T.A., Harkness A., McKay S.E., Dargie H.J. (2002) Morphine for the relief of breathlessness in patients with chronic heart failure--a pilot study European Journal of Heart Failure 4, 753-6. Lynn J. (2001) Serving patients who may die soon and their families: The role of hospice and other services JAMA 285, 925-932. Seligmann, M.E.P. (2003) Authentic Happiness. Using the New Positive Psychology to Realize Your Potential for Lasting Fulfillment. Nicholas Brealey Publishing Ltd, London, UK.