The Breathing Space Clinic …a multi-disciplinary, inter-organisational hospice-based pilot clinic to support the holistic needs of patients with advanced COPD

Pan London Airways Network
Jun. 28, 2017

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The Breathing Space Clinic …a multi-disciplinary, inter-organisational hospice-based pilot clinic to support the holistic needs of patients with advanced COPD

  1. The Breathing Space Clinic …a multi-disciplinary, inter-organisational hospice- based pilot clinic to support the holistic needs of patients with advanced COPD Dr. Ellie Hitchman Specialty Doctor St Joseph’s Hospice, Hackney Kim Barlow Specialist Physiotherapist St Joseph’s Hospice, Hackney DISCLAIMER: The views and opinions expressed in this presentation are those of the authors and do not necessarily represent the views and policy of PLAN(Pan London Airways Network).
  2. Aim of presentation This presentation will outline the development and function of the Breathing Space Clinic, focusing on the referral criteria and pathway including introduction to ACERS team
  3. Establishing need oLocal policy drivers Strategic Plan (2007) - St Joseph’s Hospice, Hackney Creation ACERS (COPD) Team - Homerton University Foundation NHS Trust oNational policy drivers End of Life Care Strategy (2008) NICE Management of chronic obstructive pulmonary disease in adults in primary and secondary care (2010) COPD clinical outcomes framework (strategy) (2011)
  4. Hackney specific… COPD 1 o31% of the adult population smoke oEthnically diverse – over 100 languages spoken oHackney residents are four times as likely to die from COPD before the age of 75 years as people living in the local authority with the lowest premature COPD death rate 1. London Health Programmes (2011)
  5. Palliative care needs of COPD patients oHeavy burden of symptoms 2, 13 oSymptoms at least as severe as lung cancer 2,3 oImpaired quality of life and emotional well being compared to lung cancer 4 oInformation needs also great - lack of awareness of progressive nature and that they may die of COPD - fear that both of these are true 2, 5 – 8 oCarers’ needs 9 - 12
  6. Palliative care needs of COPD patients Patients who died from COPD lacked surveillance and received inadequate services from primary and secondary care in the year before they died. The absence of palliative care services highlights the need for research into appropriate models of care to address uncontrolled symptoms, information provision and end of life planning in COPD 14
  7. Breathing Space Clinic Holistic Assessment Undertake a comprehensive multi-professional assessment of physical, psychosocial, spiritual wellbeing by oPalliative Care Specialty Doctor oCOPD Clinical Nurse Specialist oPalliative Care Physiotherapist oPalliative Care Health Care Assistant
  8. ACERS Service Acute COPD Early Response Service 24 hrs day specialist advice Main focus exacerbation management – community focussed Assessment, treatment and intervention MDT including medical, psychological and nursing/physiotherapist Other services Pulmonary rehabilitation Ward Education Home oxygen service Palliative care Contact 0208 510 5107 Email:
  9. Clinic aims 1. A flexible hospice-based clinic for patients with advanced chronic obstructive pulmonary disease (COPD) 2. Assessment, facilitation and treatment bringing together respiratory and palliative care expertise in order to maximise the quality of life for people with respiratory conditions who may be towards the end of life complement existing services and improve communication and joint working across pathway to improve access to specialist palliative care
  10. Clinic function Information oProvide access to information about both the underlying respiratory disease and the patient’s physical and emotional response to it, including issues of disease progression and prognosis oIntroduce and assist with advance care planning, including documentation of CPR status
  11. Clinic function Physical oOptimise symptom control through non- pharmacological and pharmacological means as necessary via access to relevant disciplines internally and externally to the hospice Psychosocial and spiritual oIntroduce patients to specialist palliative care oReferral to other services including social work, benefits, complementary therapy, psychological therapies and chaplaincy oAccess to respite service
  12. Keys to success Recognising that the clinic would not operate in isolation oSmall steering group of interested and enthusiastic professionals Representing hospice and hospital specialist palliative care local community respiratory specialist staff oBuy-in from other key personnel General practice Respiratory medicine oWide-ranging consultation Including patients oA focus on transport issues and replicating the service at home
  13. Patient example: Mary oMary is a 78 year old lady oreferred to the Breathing Space Clinic by the local ACERS team ooptimised medically for a number of years orecent exacerbation requiring hospital admission discharged with home oxygen ohousebound and frightened to leave the house due to breathlessness oseverity of COPD: Very Severe FEV1 29 % oMRC Scale: 4 main symptoms: breathlessness on exertion, anxiety, low mood, reduced exercise tolerance
  14. Clinic referral criteria Disease severity oPatients will have very severe disease – FEV1 <30% predicted (this can be greater if uncontrolled breathlessness – flexible approach) Necessity oUncontrolled physical symptoms (related either directly to the COPD) that are having a significant impact on their quality of life despite optimised medical management oThree or more admissions to hospital with respiratory failure and/or infective exacerbations of their COPD in the preceding 12 months (Those requiring more intensive home management would be referred to CHPCT) House keeping oMedical management optimised oKnow that they have a diagnosis of COPD oKnow about, and agree to the referral
  15. Referral pathway All patients referred through the Homerton Hospital’s respiratory medicine MDT This ensures optimal management of the patient’s COPD prior to referral to palliative care
  16. Role of HCA • ‘First face of the hospice’ – ‘meet and greet’ • Introduces patient and carer to the clinic • Assists them to complete outcomes measures questionnaires • Assists with taking observations • Provides information about hospice, shows them the respite ward, day hospice • Supports carers
  17. Physiotherapist Initiate specialist physiotherapy assessment in clinic Gain subjective history of how breathlessness impacts on individual and carer Objective assessment to screen mobility, transfers and level of SOB Action referrals – wheelchair service, community or SS OT, Provide hand held fan and advice sheet on Breathlessness techniques Arrange for 1:1 appointment with physio to complete assessment and consider intervention options - Refer back to PR -Refer to MFRG -Consider appropriateness for ICon
  18. ICON - In Control of my Breathing • 6 sessions out patient programme at St Joseph’s • Open to patients from C&H, TH and Newham, regardless of diagnosis, who are palliative and where breathlessness is key symptom • Have attended Pulmonary Rehab (or a comparable input) to maximise physical fitness in their locality • Main aim is to empower patients to self manage their breathlessness more effectively • Educational and practical aspects in every session • Based on Breathlessness Toolkit - Dorothy House Hospice • Enables patients to become familiar with the hospice and it’s range of services • Patients can also access rehabilitation alongside the programme by attending physiotherapy gym sessions/ ELT in Newham
  19. Icon - In Control of my Breathing Programme
  20. Medical input • Overview of general medical condition • Pharmacological management • Management of Breathlessness • Advance care planning • Optimisation of COPD treatment: • Inhaled steroids and long acting bronchodilators • Theophylline • Carbocysteine • Oxygen assessment
  21. Opioids for breathlessness management • Cochrane review (2011) found evidence to support use of oral or parenteral opioids for breathlessness in advanced disease or terminal illness • Safe for use in COPD if slowly and carefully titrated Rocker et al, Thorax (2009) • No impact on respiratory depression • Side effects and perception of risk can put patients and (doctors) off
  22. CBIS regime
  23. Advance care planning • Often patients have not had the opportunity to discuss the future with anyone • Focus on Preferred Place of Care and Preferred Place of Death • Resuscitation status and ceilings of care • Can be challenging – special considerations eg need for non invasive ventilation • We use Coordinate My Care but hard to capture all angles of patients preferences
  24. Conclusion… lessons learnt oExcellent and positive feedback from patients referred to the clinic oCurrent metrics do not support the perceived benefits that patients are expressing oInter-organisation partnership working can and does work oClinical leadership across specialist palliative and respiratory medicine was key oIncrease awareness of advanced care planning and CMC recording
  25. Thank you - any questions?
  26. References 1. Fan et al. Arch Intern Med 2007 2. Habraken et al. J Pain Symptom Manage 2009 2. Gardiner et al. Respir Med 2009 3. Edmonds et al. Palliat Med 2001 4. Gore et al. Thorax 2000 5. Curtis et al. Chest 2002 6. Curtis et al. Eur Respir J 2008 7. Caress Journal of Clinical Nursing 2009 8. Gardiner et al. Palliat Med 2009 9. Bergs. Journal of Clinical Nursing 2002 10. Booth et al. Supportive and Palliative Care 2003 11. Gysels and Higginson. Supportive and Palliative Care 2009 12. Pinto et al. Resp Medicine 2007 13. Fletcher CM, Elmes PC, Fairbairn MB et al. (1959) 14 Elkington et al Pall Med 2005