All Supportive Care in chronic lung disease COPD – Concept of a support group Gavin Hunter Respiratory Nurse Specialist Queen Elizabeth University Hospital

NICE Definition of Supportive Care “Supportive care helps the patient and their family to cope with their condition and treatment of it – from pre-diagnosis, through the process of diagnosis and treatment, to cure, continuing illness or death and into bereavement. It helps the patient to maximise the benefits of treatment and to live as well as possible with the effects of the disease. It is given equal priority alongside diagnosis and treatment.”

NICE Definition Aspects of Supportive Care Self help and support User involvement Information giving Psychological support Symptom control Social support Rehabilitation Complementary therapies Spiritual support End of life and bereavement care

All Supportive Care Patient Identification Ensure no reversibility Supportive Clinics Support Groups End of Life Planning

The Size of the Problem COPD COPD affects 120 000 people in Scotland Predicted increase of 33% in twenty years Most common cause of presentation to hospital in Scotland Responsible for 46 346 bed days in GG+C Bed occupancy increasing Accounts for 6% of all deaths in Scotland (4 500 / annum)

Palliation of COPD compared to Lung Cancer COPD patients are as likely as lung cancer patients to wish palliation rather than active treatment (1) More likely to die on NIV and with dyspnoea (1) COPD patients less likely to die at home (2) Healthcare is initiated as a result of exacerbation rather than as a end of life plan (3) 1 Claessens et al. J Am Geriatr Soc 2000;48: Suppl. 5 S146–S153 2 Gore et al. Thorax2000;55:1000–1006 3 Skilbeck et al.Palliat Med 1998;12:245–254.

Factors associated with poor symptom control / prognosis Severe Disease - FEV1 <30% pred More than 3 admission past year LTOT MRC grade 4-5 Right heart failure Previous NIV or ITU > 6 weeks systemic steroids last 12 months

Clinical Uncertainty Patients managed from crisis to crisis Last-minute decisions about life-support COPD progresses at a highly variable rate. Some with severe disease remain stable for months or years while others decline rapidly. Exacerbations that bring about respiratory failure occur suddenly and unpredictably. 8

All Supportive Care Patient Identification Ensure diagnosis / possible reversible component Supportive Clinics Support Groups End of Life Planning

Type 2 Respiratory Failure Pulmonary Phenotypes Type 2 Respiratory Failure Recurrent Exacerbations Rapidly Declining FEV1 Chronic Bronchitis Emphysema Bronchiectasis Azithromycin Nebulised antibiotics Consider home NIV ?high dose ICS ?only ICS if eosinophillia Transplant Bronchoscopic LVRS Mucolytic

All Supportive Care Patient Identification Ensure no reversibility Supportive Clinics Support Groups End of Life Planning

Respiratory Supportive Clinic – “severe COPD clinic” Multidisciplinary Approach

Severe COPD clinic “you have an irreversible lung condition which is causing you a lot of distress we should....” “...accept that there is nothing that we can do to improve the disease and focus on using medications to improve your quality of life.” “...try some alternative medication that may or may not help but may give you side effects”

“Severe COPD” clinic Initially run 2006 – running still Respiratory Consultant Clinical resp nurse specialist Palliative care Dietetics Physiotherapist Benefits

Impact on Hospital Admissions COPD Related events per year Pre Clinic Attendance Post Clinic Attendance Admissions Total 62 28 Admissions Ave 1.4 0.6 p=0.003 Hospital Days Total 475 186 Hospital Days Ave 10.5 4.1 p=0.009

Qualitative Patient Interviews “You don’t have to wait too long to see the doctors” “There is not anyone I’ve seen in the team that’s not been nice” “I was going on holiday to Flamingo Land and they got me a wheelchair” “They gave me a walking tripod” “a doctor asked me if everything got bad would I want to go to a hospice or a hospital. I wish my dad would have sat down and discussed these things with us” “it’s good to get a chance to talk about things you don’t talk about in hospital” “they take time to talk to you, it doesn’t feel like a conveyor belt” “why do you call it End Stage”

All Supportive Care Patient Identification Ensure no reversibility Supportive Clinics Support Groups End of Life Planning

COPD Support Group Started 2017 Set up costs- Dolby vivisol / BLF 1-2 days of nurse time per month Budget approx £600 / yr Pending assessments Qualitative interviews Depression and Anxiety Scores QOL Admission rates

COPD support Group Similar groups – Lung Ca / ILD - excellent response - well attended Initial invites to those on “severe COPD” clinic template Similar programme to above groups Runs parallel to “severe COPD” clinic

COPD Support Group 2017 Less focus on education about disease Massage therapy available Class Size 8-12 so far “Drop in” service from supportive clinic MRC Grade 5 SOB

COPD Support Group Program 2018 External and Internal presentees Travel / Holiday / Insurance Tai Chi Gardening Benefits/Housing Benefits of exercise Occupation Therapy Singing Nutrition Oxygen December- Christmas party

All Supportive Care Patient Identification Ensure no reversibility Supportive Clinics Support Groups End of Life Planning

Anticipatory Care Planning record of the preferred actions, interventions and responses that care providers should make following a clinical deterioration or crisis

Gold Standard Framework The surprise question: ‘Would you be surprised if this patient were to die in the next 6 – 12 months’ Choice/ Need: The patient with advanced disease makes a choice for comfort care only, not ‘curative’ treatment, or is in special need of supportive / palliative care Clinical indicators - Specific indicators of advanced disease

Anticipatory Care Planning Severe COPD clinic: Increased interaction and trust between clinicians and patients / carers Relaxed manner allows for more in-depth communication Patients more open in conversation ACP’s in this arena show increased numbers and “quality”

Nice Definition Aspects of Supportive Care Self help and support User involvement Information giving Psychological support Symptom control Social support Rehabilitation Complementary therapies Spiritual support End of life and bereavement care

Summary Patient Centred Care Ensure No Reversible Factors Ensure Appropriate Patient Selection Patient Centred Care Best Supportive Care Supportive Clinics Anticipatory Care Plans Peer Led Support Groups

Summary Support group is: Enjoyable Hard work Cost effective Provides patients with a focus!!! It works!!

Acknowledgments Dr. David Raeside Dr. David Anderson Palliative care team Community Respiratory Team BLF - Alison Sweeney Dolby Vivisol The many speekers and volunteers who have helped over the cousre of the group