Delivering Respiratory Palliative Care

1
Delivering Respiratory Palliative Care

• Karon Carson
• Lead Respiratory Nurse
• NHS Lanarkshire

Respiratory MCN Learning Forum
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)

Respiratory MCN Learning Forum
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

Respiratory MCN Learning Forum
4
Supportive Care

• Helps the patient and their family cope with
  their
• condition and its treatment from pre- diagnosis,
  
• diagnosis, continuing illness and death into and
• into bereavement.
• (NICE, 2004)

Respiratory MCN Learning Forum
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)

Respiratory MCN Learning Forum
6
National Policy

• Calman-Hine report, 1995
• NCPC
• SPPC
• Department of Health
• Scottish Executive / Government

Respiratory MCN Learning Forum
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)

Respiratory MCN Learning Forum
8
Organ Failure Disease Trajectory
Disease progression
Respiratory MCN Learning Forum
9
Prognostic Indicators

• Severe airflow obstruction (FEV1 lt30 predicted)
  with little relief from breathlessness despite
  optimal medication.
• Recurrent hospital admission (gt3 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

Respiratory MCN Learning Forum
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
Respiratory MCN Learning Forum
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.

Respiratory MCN Learning Forum
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

Respiratory MCN Learning Forum
13
Palliative care extends beyond the needs of the
patient

• Never forget the carers

Respiratory MCN Learning Forum
14
What do patients say?
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 Im not sure
what it is
Someone to talk to without feeling rushed
Id like help when I feel I need it
Respiratory MCN Learning Forum
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

Respiratory MCN Learning Forum
16
Models of palliative care

• Traditional palliative care model
• Collaborative partnership
• Mixed management model

Respiratory MCN Learning Forum
17
Sheffield Model of Supportive Care
Diagnosis
Death
Disease directed therapies
Investigation
Bereavement
Life prolonging
Life maintaining
Curative
Supportive Therapies
Information services Rehabilitation
Physiotherapy O.T Dietetics Social work
Chaplaincy Palliative care Voluntary sector
Ahmedzia, 2005
Respiratory MCN Learning Forum
18
Planning

• Needs assessment
• Set goals
• Establish leadership
• Establish good communication links
• Expectations of specialist palliative care
• Service users views and ideas
• Education
• Funding

Respiratory MCN Learning Forum
19
Gold Standards Framework
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
Respiratory MCN Learning Forum
20
Respiratory MCN Learning Forum
21
Delivering

• Streamlined and coordinated service across
  boundaries
• Avoid duplication
• Joint working
• Evolve Gold Standards Framework
• Bereavement support

Respiratory MCN Learning Forum
22
Stumbling blocks

• Funding and resources
• Knowledge and expertise
• Confidence
• Professional/historical mind sets
• Jargon
• Poor communication
• Crisis intervention/fire fighting
• Prognostic uncertainty

Respiratory MCN Learning Forum
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

Respiratory MCN Learning Forum
24

• 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

Respiratory MCN Learning Forum
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.

Respiratory MCN Learning Forum
26
Referral to CLD Service

• Via hospital consultant / respiratory clinic
  / respiratory CNS / ward staff
• Eligibility to service
• All patients on LTOT
• Frequent admissions/AE attendance
• FEV1 lt 40 with poor symptom control
• Unmet patient/carer needs

Respiratory MCN Learning Forum
27
Initial Assessment

• Baseline measurements
• Assessment of perceived / actual needs
  
  
  
  
  
  
  and patient / carer knowledge
• Pulse oximetry (and spirometry)
• Quality of life questionnaires

Respiratory MCN Learning Forum
28
Follow Up Visits

• Dependant on patients needs
• Evaluate action taken at last visit
• Assess changes to patients condition and take
  further action as appropriate
• Bereavement visits

Respiratory MCN Learning Forum
29
Service Intervention

• Symptom control
• Patient / Carer education
• Psychological care
• Emotional support
• Phone support
• Home exercise programme
• End of life discussion
• Onward referral

Respiratory MCN Learning Forum
30
Demographics

• 176 patients
• 127 COPD 8 bronchiectasis 41 ILD
• Mean age 79 years
• SpO2 97
• FEV1 0.99L (42 predicted)
• Median MRC dyspnoea score 5
• Oxygen concentrators 131
• Oxygen cylinders 47

Respiratory MCN Learning Forum
31
What was the impact on

• Quality of life
• Patient/carer satisfaction
• Hospital admissions

Respiratory MCN Learning Forum
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

Respiratory MCN Learning Forum
33
Hospital Anxiety and Depression Score

• Baseline Follow-up
• (n72) (n72)
• Anxiety 8.0 6.0
• Depression 5.0 5.0
• 
  
• 
  p0.04

Respiratory MCN Learning Forum
34
St Georges Respiratory Questionnaire

• Baseline Follow-up p-value
• (n66) (n66)
• Symptoms 62.59 66.48 pgt0.05
• Activity 86.54 73.80 plt0.05
• Impact 54.96 60.18 pgt0.05
• Total 65.23 66.95 pgt0.05

Respiratory MCN Learning Forum
35
Hospital Admissions

• Before intervention After intervention
• (n170) (n170)
• 2.18 1.67
• ( 372 ) ( 284 )
• plt0.05

Respiratory MCN Learning Forum
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
nurses visits 100 felt that the service helped
to alleviate areas of concern
Respiratory MCN Learning Forum
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

Respiratory MCN Learning Forum
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?

Respiratory MCN Learning Forum
39
In summery

• Palliative care is within the capabilities of us
  all its good holistic care.
• We are all doing some degree of palliative care
  within our daily roles
• Dont re-invent the wheel - lots of good practice
  out there.
• Stay flexible
• Be positive barriers can be overcome.

Respiratory MCN Learning Forum
40

• The man who moves a mountain begins by carrying
  small stones.
• William Faulkner

Respiratory MCN Learning Forum