1. Delivering Respiratory Palliative Care
Karon Carson
Lead Respiratory Nurse
NHS Lanarkshire
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2. Palliative Care
‘active total care of patients whose disease is not responsive to curative treatment. Control of pain or other symptoms, psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for patients and their families.’ WHO (1990)
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3. Palliative Care
The active holistic care of patients with advanced progressive illness. Many aspects also applicable earlier in the course of the illness in conjunction with other treatments. NICE, 2004
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4. Supportive Care
Helps the patient and their family cope with their condition and it’s treatment from pre- diagnosis, diagnosis, continuing illness and death into and into bereavement. (NICE, 2004)
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5. Terminal Care ‘usually refers to the management of
patients during their last few days or weeks
or even months of life from a point when it
is clear that the patient is in a progressive
state of decline’
NCPC (1995)
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6. National Policy Calman-Hine report, 1995 NCPC SPPC
Department of Health
Scottish Executive / Government
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7. The Need For Palliative Care
Patients with COPD experience worse end stage health status than those with lung cancer. (Tranmer et al, 2003; Edmonds et al, 2001; Gore et al 2000)
Decreased quality of life. (Seamark et al, 2007; Barnett, 2006; NICE 2004; Pilling, 2003; Varskey, 2003)
Lack of support / unmet needs. (Elkington et al, 2005; British Lung Foundation, 2004; Varskey, 2003; SPAPCC 1998)
Lack of ‘end-of-life’ communication. (Mulcahya et al, 2005; Knauft et al, 2005; Elkington et al, 2001)
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8. Organ Failure Disease Trajectory
Symptoms
Exacerbation
Death
Disease progression
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9. Prognostic Indicators
Severe airflow obstruction (FEV1 <30% predicted) with little relief from breathlessness despite optimal medication.
Recurrent hospital admission (>3 admissions in 12 months for COPD exacerbations)
MRC grade 4/5
Signs and symptoms of Right heart failure
Combination of other factors e.g. weight loss, anorexia, previous ITU/NIV/resistant organism, depression
Multiple co-morbidities
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10. General Palliative Care
information for patients and carers, with ‘signposting’ to relevant services
accurate holistic assessment of patient needs
co-ordination of care teams in and out of hours and across boundaries of care
good levels of symptom control
psychological, social, spiritual and practical support
open and sensitive communication with patients, carers and professional staff
referral for specialist palliative care when necessary.
NICE, 2004
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11. Specialist Palliative Care
patients with uncontrolled physical or psychological symptoms despite optimal tolerated therapy.
patients and families needing additional support with issues relating to end of life care including advance care planning and decisions about treatment and care.
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12. Needs of patient with advanced respiratory disease
Good symptom control – pharmacological and non pharmacological
Meaningful education
Social support
Psychological and emotional support
Spiritual support
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13. Palliative care extends beyond the needs of the patient
Never forget the carers
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14. What do patients say? ‘My wife is stressed and needs support’
‘Palliative care is only for cancer’
‘My wife is stressed and needs support’
‘I want to be looked after by people who know my disease’
‘I get lots of conflicting advice and information’
‘I would like palliative care but I’m not sure what it is’
‘Someone to talk to without feeling rushed’
‘I’d like help when I feel I need it’
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15. What patients want Control of symptoms
Co-ordination of services facilitated by key worker
Dignity
Information to be available and timely
Communication-skilled and face to face
Psychological support-patient, family and friends National Cancer Survey 2004
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16. Models of palliative care
Traditional palliative care model
Collaborative partnership
Mixed management model
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17. Sheffield Model of Supportive Care
Diagnosis
Death
Disease directed therapies
Investigation
Bereavement
Curative
Life prolonging
Life maintaining
Supportive Therapies Information services – Rehabilitation – Physiotherapy – O.T – Dietetics – Social work – Chaplaincy – Palliative care – Voluntary sector
Ahmedzia, 2005
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18. Planning Needs assessment Set goals Establish leadership
Establish good communication links
Expectations of specialist palliative care
Service users views and ideas
Education
Funding
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19. Gold Standards Framework Preferred Liverpool Care place of Pathway
Marie Curie
cancer care
website
Liverpool Care
Pathway
Preferred
place of
care
Best QoL
SPPC
Living and dying with
advanced heart failure:
a palliative care approach
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20. Respiratory MCN Learning Forum

21. Delivering Streamlined and coordinated service across boundaries
Avoid duplication
Joint working
Evolve Gold Standards Framework
Bereavement support
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22. Stumbling blocks Funding and resources Knowledge and expertise
Confidence
Professional/historical mind sets
Jargon
Poor communication
Crisis intervention/fire fighting
Prognostic uncertainty
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23. NHS Lanarkshire experience
Nurse led chronic lung disease service – Wishaw General Hospital
Advanced care plans –
NHSL Long Term Conditions Collaborative
Multidisciplinary palliative care education – Palliative care MCN non-malignant group
MDT out-patient COPD clinic – Monklands General Hospital
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24. Karon Carson and Dr KS Tan Wishaw District General Hospital
Does a nurse-led palliative care service for chronic lung disease have a positive impact on quality of life and patient satisfaction?
Karon Carson and Dr KS Tan
Wishaw District General Hospital
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25. Objectives of CLD Service
To collaborate with other members of the multi-disciplinary team to co-ordinate supportive care which meets the individuals needs
The CLD service promotes and maintains the best possible quality of life and end of life care for patients through symptom control and improvement of functional capacity.
To help patients and their carers feel more in control regarding disease process and management.
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26. Referral to CLD Service
Via hospital consultant / respiratory clinic / respiratory CNS / ward staff
Eligibility to service:
All patients on LTOT
Frequent admissions/A+E attendance
FEV1 < 40% with poor symptom control
Unmet patient/carer needs
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27. Initial Assessment Baseline measurements
Assessment of perceived / actual needs and patient / carer knowledge
Pulse oximetry (and spirometry)
Quality of life questionnaires
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28. Follow Up Visits Dependant on patients’ needs
Evaluate action taken at last visit
Assess changes to patient’s condition and take further action as appropriate
Bereavement visits
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29. Service Intervention Symptom control Patient / Carer education
Psychological care
Emotional support
Phone support
Home exercise programme
End of life discussion
Onward referral
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30. Demographics 176 patients 127 COPD; 8 bronchiectasis; 41 ILD
Mean age : 79 years
SpO2 : 97%
FEV : 0.99L (42% predicted)
Median MRC dyspnoea score: 5
Oxygen concentrators: 131
Oxygen cylinders: 47
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31. What was the impact on Quality of life Patient/carer satisfaction
Hospital admissions
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32. Statistical Analysis
Comparisons of quality of life scores were made by Mann-Whitney U test
Hospital admissions were averaged and analysed by t-test
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33. Hospital Anxiety and Depression Score
Baseline Follow-up
(n=72) (n=72)
Anxiety *
Depression
*p=0.04
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34. St George’s Respiratory Questionnaire
Baseline Follow-up p-value (n=66) (n=66) Symptoms p>0.05 Activity p<0.05 Impact p>0.05 Total p>0.05
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35. Hospital Admissions Before intervention After intervention
(n=170) (n=170) *
( 372 ) ( 284 )
* p<0.05
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36. Patient satisfaction Carer satisfaction
7% felt that the service made no difference to them
93% felt that the service helped them
96% said the nurse explored what they could do to improve QoL
100% reported that the nurse explained things clearly
100% said is was helpful to have nurse visit at home
94% felt the visits helped both their relative/friend and themselves
100% felt it was helpful to have the nurse visit their relative/friend at home
100% felt involved in the nurse’s visits
100% felt that the service helped to alleviate areas of concern
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37. Patient Satisfaction
‘helped me to understand my disease more’ ‘helped my confidence’ ‘felt relaxed in my own home’ ‘talking to someone without feeling rushed’ ‘coming into my home to see how I can really manage’ ‘having time to ask all my questions’
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38. Over to you
What is the structure of palliative care service in your area?
What would the ideal non-malignant palliative care service look like in your area?
What are the barriers to non-malignant palliative care in your area?
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39. In summery
Palliative care is within the capabilities of us all – it’s good holistic care.
We are all doing some degree of palliative care within our daily roles
Don’t re-invent the wheel - lots of good practice out there.
Stay flexible
Be positive – barriers can be overcome.
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40. The man who moves a mountain begins by carrying small stones.
William Faulkner
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