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).

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

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)

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)

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

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

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

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: homertoncopd@nhs.net

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

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

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

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

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

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

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

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

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

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

Icon - In Control of my Breathing Programme

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

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

CBIS regime

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

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

Thank you - any questions?

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