Palliative care education as part of pulmonary rehabilitation

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Palliative care education as part of pulmonary rehabilitation

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1. Palliative care education as part of pulmonary rehabilitation Michelle Rodda and Sue Ward

2. Sue Ward Sue – to introduce self, role and place of workSue – to introduce self, role and place of work

3. Michelle Rodda Michelle – to introduce self, role and place of workMichelle – to introduce self, role and place of work

4. Hawke’s Bay Michelle – HB has a population of 155,000, We also cover large rural areas especially Wairoa, CHB and beach areas with difficult access and relatively isolated. HBDH covers 5% of NZ land area Michelle – HB has a population of 155,000, We also cover large rural areas especially Wairoa, CHB and beach areas with difficult access and relatively isolated. HBDH covers 5% of NZ land area

5. Michelle – in HB 15,000 (or 10% of population) who have known respiratory disease probably that again undiagnosed. From MOH sept 2010. 114000 non Maori. With a Higher than average Maori 34000 approx 28 % compared to 15% nationally and Pacific Island groups compared to other areas of similar size. We have a number of low decile areas and ‘at risk’ health populations who are sadly not enagaged in self management of chronic diseases.Michelle – in HB 15,000 (or 10% of population) who have known respiratory disease probably that again undiagnosed. From MOH sept 2010. 114000 non Maori. With a Higher than average Maori 34000 approx 28 % compared to 15% nationally and Pacific Island groups compared to other areas of similar size. We have a number of low decile areas and ‘at risk’ health populations who are sadly not enagaged in self management of chronic diseases.

6. What is pulmonary rehabilitation ? Sue : Sue :

7. Physical Problems with Respiratory Diseases Poor exercise tolerance. Expend extra energy ‘just to breathe’. Increased retention of chest secretions. Poor sputum clearance. Frequent infections. Reduced ‘physical abilities’. Sue – we know that patients with respiratory disease suffer from these symptoms, but a key aim is for them to control illness not the other way aroundSue – we know that patients with respiratory disease suffer from these symptoms, but a key aim is for them to control illness not the other way around

8. Who Benefits? COPD – usually moderate to severe Declining functional capacity Clinically stable Optimal pharmaceutical management Motivated * Smokers * In the care of Primary Health Care Provider Sue - Mod to severe the degree of spirometry abnormality generally reflects the severity of COPD>(after about 60% of airway function is lost the symptoms of copd cannot be diguised and the loss of function starts to impact on every day life) also appropriate for other chronic lung disease such as interstitial lung disease, broncheitasis , cystic fibrosis and also pre and post lung surgery -Patients referred while on the ward will be assessed for Pulmonary rehab post out patient / gp follow up. May see people getting over exaceration / particularly if frequent admissions. -should be establised on their med’s breathlessness furthers limiting ADL’s Motivated to attend / be involved in own health care Smokers – motivated to give up? Group may help – support and encouragement Self management – good communication with GP / seeking help early Exclusions – other unstable medical conditions – eg unstable angina Inability to mobilize / transport issues / language barriers / not motivated / Sue - Mod to severe the degree of spirometry abnormality generally reflects the severity of COPD>(after about 60% of airway function is lost the symptoms of copd cannot be diguised and the loss of function starts to impact on every day life) also appropriate for other chronic lung disease such as interstitial lung disease, broncheitasis , cystic fibrosis and also pre and post lung surgery -Patients referred while on the ward will be assessed for Pulmonary rehab post out patient / gp follow up. May see people getting over exaceration / particularly if frequent admissions. -should be establised on their med’s breathlessness furthers limiting ADL’s Motivated to attend / be involved in own health care Smokers – motivated to give up? Group may help – support and encouragement Self management – good communication with GP / seeking help early Exclusions – other unstable medical conditions – eg unstable angina Inability to mobilize / transport issues / language barriers / not motivated /

9. Goals of Pulmonary Rehabilitation What can be achieved ? Reduction in frequency and severity of symptoms Reduction in disability QOL improvements Increased participation in social and physical activities Reduce health care burden for patients, families and communities Improve knowledge of lung condition and promote self management Sue - Following PR pt’s should be condifident to monitor and mange their lung condition more effectively so they will have fewer sudden exacerbations and need for emergency treatment, and their dependancy level is reduced. Families should feel more confident and less restricted. Sue - Following PR pt’s should be condifident to monitor and mange their lung condition more effectively so they will have fewer sudden exacerbations and need for emergency treatment, and their dependancy level is reduced. Families should feel more confident and less restricted.

10. Research says - Sue - Sue -

11. Education Programme content Local programme =2 sessions per week for 8 weeks A & P Benefits of exercise Energy conservation / relaxation Breathing exercises to help with expectoration and breathlessness control Support services: Social worker, WINZ, Asthma HB, Sport HB Anxiety management; introduction to CBT Nutrition Medication - Devices / Oxygen Smoking cessation Continence management Home exercise programme / goal setting / exercise diary keeping PALLIATIVE CARE Sue - Sue -

12. Why include palliative care in Pulmonary Rehabilitation ? People experience breathlessness at end of life It is scary, as is dying Demystifying hospice and palliative care is really really important If we talk to people early they are able to take information on board and make informed decisions about their future care Michelle : There are a number of studies looking at breathlessness at end of life – depending on which one you read between 50 – 87% of patients experience breathlessness. For respiratory patients we know this will be towards the high end. It is distressing and sadly often not as well managed as it could be.Michelle : There are a number of studies looking at breathlessness at end of life – depending on which one you read between 50 – 87% of patients experience breathlessness. For respiratory patients we know this will be towards the high end. It is distressing and sadly often not as well managed as it could be.

13. Palliative care definition from WHO ‘ an approach that improves the quality of life of patients and their families facing the problems associated with life limiting 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 or spiritual’ MichelleMichelle

14. A much easier definition Comes from latin word ‘to cloak’ Palliative care is the active and total care of a patient and their family by a multidisciplinary team when disease is no longer responsive to curative treatment MichelleMichelle

15. Common misconception even amongst health professionals that palliative care is only care of those who are imminently dying . . . Michelle - Michelle -

16. Misconceptions Hospice is a place to die Palliative care is about looking after those who are dying If I’m referred to the hospice it’s because I’m close to dying Hospice is only for those with cancer Michelle – this is a widely held belief amongst healthcare professionals as well as patientsMichelle – this is a widely held belief amongst healthcare professionals as well as patients

17. What we discuss : What is palliative care ? What does the local hospice do ? Who do they look after ? Why would you be referred to hospice ? Michelle – include quotes from patients in here ‘ Next step but one’, looking after me and my family Comes from the word ‘to host’ Hospices have been in existence since the middle ages. Originally places of rest for travellers What hospices now are like Look at research and philosophy Michelle – include quotes from patients in here ‘ Next step but one’, looking after me and my family Comes from the word ‘to host’ Hospices have been in existence since the middle ages. Originally places of rest for travellers What hospices now are like Look at research and philosophy

18. Hospice New Zealand Michelle - "You matter because you are you and you matter to the last moment of your life. We will do all we can not only to help you die peacefully, but to live until you die" (Saunders 1976) Within hospice there is a focus on the quality of the life you have and making the most of this ‘living every moment’ Michelle - "You matter because you are you and you matter to the last moment of your life. We will do all we can not only to help you die peacefully, but to live until you die" (Saunders 1976)Within hospice there is a focus on the quality of the life you have and making the most of this ‘living every moment’

19. Palliative care research Early palliative care led to significant improvements in both quality of life and mood Patients in early palliative care had less aggressive treatment but actually lived longer Temel, J., Greer,J., Muzikansky, A,. Gallagher, E., Admane, S., Jackson, V., Dahlin, C., Blinderman, C., Jacobsen, J., Pirl, W., Billings, J., and Lynch, T. (2010) Early palliative care with metastatic non small cell lung cancer. The New England Journal of Medicine, 363 - 8 Question – What would you want : Quality versus quantity ? Michelle – in a recent study (2010) in USA across 4 universitys, hospitals and adult palliative care facilities, patients with non small cell lung ca participated in a randomised trail that showed – early palliative care lead to significant improvements in both quality of life and mood, they also had less aggressive care but lived longer. Research study – Early palliative care for patients with metastic non small celllung cancer by Temel, Greer, Muzikansky, Gallagher, Admance, Jackson, Dahlin, Blinderman, Jacobsen, Pirl, Billings and Lynch, published in The New Engalnd Journal of Medicine 2010Michelle – in a recent study (2010) in USA across 4 universitys, hospitals and adult palliative care facilities, patients with non small cell lung ca participated in a randomised trail that showed – early palliative care lead to significant improvements in both quality of life and mood, they also had less aggressive care but lived longer. Research study – Early palliative care for patients with metastic non small celllung cancer by Temel, Greer, Muzikansky, Gallagher, Admance, Jackson, Dahlin, Blinderman, Jacobsen, Pirl, Billings and Lynch, published in The New Engalnd Journal of Medicine 2010

20. What else we discuss : Symptom management Advance directives Family support Michelle – include quotes from patients in here Why is it important to them Symptoms breathlessness – management of with morphine, best practice guidelines and associated feelings and experience with morphine, look at midazolam spray rationale between, look at other aspects of pulmonary rehab and there importance as wellMichelle – include quotes from patients in here Why is it important to them Symptoms breathlessness – management of with morphine, best practice guidelines and associated feelings and experience with morphine, look at midazolam spray rationale between, look at other aspects of pulmonary rehab and there importance as well

21. Questions in questionnaire include : What is your understanding of Palliative Care? What is your understanding of hospice care? Is a talk regarding palliative care useful in a rehabilitation programme? Would you feel able to openly discuss palliative care with your GP? What are the advantages of being referred to a hospice palliative care team? What are the disadvantages of being referred to a hospice palliative care team? Have we missed anything off this talk that might have been helpful? SueSue

22. Evaluation responses Excellent information! Got rid of myths Showed that the whole family is cared for Earlier referral means better symptom control Better quality of life Increased shortness of breath control The importance of the whanau It’s not just focussing on the person and their respiratory disease. SueSue

23. Where to from here ? Michelle – as Sue and I have always said our ultimate plan is to take over the world. But in terms of this presentation – to continue palliative care education in pulmonary rehab within hawkes bay, hopefully incorporate it into rural areas programme and maybe even some dreaded research and publications about the importance of thisMichelle – as Sue and I have always said our ultimate plan is to take over the world. But in terms of this presentation – to continue palliative care education in pulmonary rehab within hawkes bay, hopefully incorporate it into rural areas programme and maybe even some dreaded research and publications about the importance of this

24. Final thoughts Key speakers in any recognised pulmonary rehabilitation course throughout the world are considered to be Respiratory Nurse, Physician, Dietician, Physio, OT, Pharmacist. Our question – should palliative care also be automatically included ? Remembering this is a programme of chronic disease management. Sue – to ‘quote a respiratory consultant that I work with and Michelle used to work with – the minute we give an inhaler to a patient we are symptom managing them until they die. As they have a ‘life limiting illness’ which is what palliative care is about.Sue – to ‘quote a respiratory consultant that I work with and Michelle used to work with – the minute we give an inhaler to a patient we are symptom managing them until they die. As they have a ‘life limiting illness’ which is what palliative care is about.

25. Questions ????????

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