Delivering Respiratory Palliative Care Karon Carson Lead Respiratory Nurse NHS Lanarkshire Respiratory MCN Learning Forum

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

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

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) Respiratory MCN Learning Forum

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

National Policy Calman-Hine report, 1995 NCPC SPPC Department of Health Scottish Executive / Government Respiratory MCN Learning Forum

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

Organ Failure Disease Trajectory Symptoms Exacerbation Death Disease progression Respiratory MCN Learning Forum

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 Respiratory MCN Learning Forum

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

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

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

Palliative care extends beyond the needs of the patient Never forget the carers Respiratory MCN Learning Forum

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’ Respiratory MCN Learning Forum

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

Models of palliative care Traditional palliative care model Collaborative partnership Mixed management model Respiratory MCN Learning Forum

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 Respiratory MCN Learning Forum

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

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 Respiratory MCN Learning Forum

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Delivering Streamlined and coordinated service across boundaries Avoid duplication Joint working Evolve Gold Standards Framework Bereavement support Respiratory MCN Learning Forum

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

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

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 Respiratory MCN Learning Forum

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

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 Respiratory MCN Learning Forum

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

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 Respiratory MCN Learning Forum

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

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

What was the impact on Quality of life Patient/carer satisfaction Hospital admissions Respiratory MCN Learning Forum

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

Hospital Anxiety and Depression Score Baseline Follow-up (n=72) (n=72) Anxiety 8.0 6.0* Depression 5.0 5.0 *p=0.04 Respiratory MCN Learning Forum

St George’s Respiratory Questionnaire Baseline Follow-up p-value (n=66) (n=66) Symptoms 62.59 66.48 p>0.05 Activity 86.54 73.80 p<0.05 Impact 54.96 60.18 p>0.05 Total 65.23 66.95 p>0.05 Respiratory MCN Learning Forum

Hospital Admissions Before intervention After intervention (n=170) (n=170) 2.18 1.67* ( 372 ) ( 284 ) * p<0.05 Respiratory MCN Learning Forum

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 Respiratory MCN Learning Forum

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

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

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. Respiratory MCN Learning Forum

The man who moves a mountain begins by carrying small stones. William Faulkner Respiratory MCN Learning Forum