Pain and symptom management in pleural mesothelioma

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1 Pain and symptom management in pleural mesothelioma MARF October 2006 Helen Clayson Hospice of St Mary of Furness University of Sheffield

2 Outline Background to the study Symptoms in mesothelioma What is palliative care? Experiencing breathlessness Managing breathlessness Experiencing pain Managing pain Supporting the whole family Acknowledgements

3 What is palliative care? Palliative care is: the active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. WHO 2002 Geneva

4 Background Doctoral study: The experience of pleural mesothelioma in northern England 4-part community-based study Interviews with 15 patients 6 Focus groups with bereaved relatives Interviews with 10 doctors and nurses Review of hospital, hospice and GP records of 80 patients who died due to mesothelioma

5 Study sites Barrow-in in-furness shipyard town Leeds site of asbestos textile factory closed in 1955 Doncaster railway plant works and many power stations along the river Trent

6 Barrow-in -Furness shipyard in the 1950s

7 Thorpe power station

8 Doncaster railway works

9 Recorded symptoms in mesothelioma Dyspnoea Pain Cough Weight loss Anxiety Anorexia Depression Sweating Emotional 96% 91% 41% 41% 31% 25% 19% 18% 16% Social Nausea Fatigue Dysphagia Psychiatric Constipation Ascites Vomiting Painful metastasis 16% 14% 13% 11% 10% 8% 8% 5% 5%

10 Experiencing breathlessness Breathlessness is a biopsychosocial* * phenomenon: Shortness of breath A smothering feeling Inability to get enough air Suffocation *Physical, psychological and social factors interact The only reliable measurement is self-report report

11 The meaning of breathlessness A threat to life Herald of disease progression Stigma Loss of agency Loss of self esteem Altered body image Produces fear

12 Reasons for breathlessness Pleural effusion Pleural thickening restricting chest wall mobility Tumour invasion or compression of lung or other vital structures in centre of chest Pericardial effusion Other problems such as anaemia, chest infection, pulmonary embolus or pre-existing existing lung disease

13 Psychological factors Anxiety about the illness -panic attacks vicious circle Feelings: burden on family, unfinished business, guilt, stigma, blame Social issues: financial, litigation, social isolation, work, working spouse Anxiety is rarely the sole cause of breathlessness in advanced disease The coping narrative an important strategy but may delay asking for help

14 Treating breathlessness Treat underlying cause when possible: Drain effusions, pleurodesis,, antibiotics, diuretics, bronchodilators, debulking surgery Palliate with pharmacological and non- pharmacological measures The symptom least likely to be relieved needs specialist attention Include the family carers

15 Medication Opioids Sedatives Carbocisteine Oxygen v air Cough suppressants Muscle relaxants NB:Co-existing conditions Bronchodilators Anticholinergic agents

16 Non-pharmacological interventions Increase mastery & coping strategies information and a key worker Support the family carer Alleviate other anxieties, other symptoms and psychosocial problems Behavioural approaches, relaxation, distraction techniques, hypnosis, Complementary Therapies, visualisation Positioning and support A fan is often as helpful as oxygen

17 Modern management of breathlessness Relaxation and breathing training may help Physiotherapy and Occupational Therapy help patients adjust lifestyle to level of physical ability Complementary therapies may improve control and relieve anxiety Medical treatments include sedatives, morphine-type drugs and (sometimes) oxygen

18 Experiencing pain in mesothelioma Patients tend to be stoical and often put up with pain until desperate or under-dose dose ( coping( coping ) Pain creates fear: Disease progression Impending death Cancer fatalism belief that pain is inevitable in cancer addiction Loss of control We can relieve >95% cancer pain but study showed inadequate management

19 Treatment of pain in mesothelioma Complex often involves nerve pain which may not respond to morphine doctors may not know Morphine? -modern alternatives may be more effective and have fewer side-effects effects Adjuvant drugs anticonvulsants, antidepressants Continuous infusions, nerve blocks or cordotomy may be required Chemotherapy may improve symptoms Specialist advice is required palliative care physician or pain management team

20 Non-pharmacological management of pain Increase mastery & coping strategies Support the family carer Reduce anxiety: behavioural approaches, relaxation, information, key worker Art or music therapy Complementary therapies, visualisation Alleviate other anxieties, other symptoms and psychosocial problems TENS machine

21 Caution more is not necessarily better!

22 Supporting the whole family Family members and other carers have their issues too Information Psychological/emotional support Financial Bereavement support Children may not always be vocal but they have information and support needs too Useful websites:

23 Acknowledgements Thankyou to the following: Patients, family members and healthcare professionals who contributed to the study Supervisors: Professor Jane Seymour, Dr Peter Bath and Dr Bill Noble MARF for this invitation You, the audience, for listening Helen Clayson

24 Coniston in the Lake District

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