1. Palliative care for end stage respiratory disease
Aileen McCartney
Senior Physiotherapist
Wisdom Hospice, Rochester, Kent
June 2007

2. Objectives
To understand what palliative care and specialist palliative care is and what happens at the hospice
To identify common problems for people in their final year of life with end stage respiratory disease
To understand medical and physiotherapy management and treatment in the last year of life for people with end stage respiratory disease
To have a knowledge of management of people with end stage respiratory disease in the terminal phase

3. Palliative care What is it?
“An approach that improves quality of life of patients and their families facing the problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychoscocial and spiritual.”
WHO definition 2003
Palliative care affirms life and regards dying as a normal
process and intends neither to hasten or postpone death.

4. Palliative care It is provided by 2 distinct categories of health and
social care professionals
Those providing day to day care to patients and their carers in their homes and in hospitals
Those who specialise in palliative care
Everyone can provide palliative care with
the right support
It is not just for people in the very last days of life –
therefore please don’t walk away if you hear they are for
palliative care!

5. End stage respiratory disease
What conditions?
COPD
Lung cancer
Mesothelioma
When are they end stage?
Lung cancer and mesothelioma are generally aggressive conditions with low 1 year survival rate after diagnosis.
COPD patients are more difficult to predict as can have disease for many years with many relapses – identifying “end stage” very difficult

6. Lung Cancer
Around new cases per year with a similar number of deaths (33465 in 2005)
One of lowest survival rates of all cancers, in England and Wales around 25% of patients alive 1 year after diagnosis, dropping to 7% at 5 years
Cough, haemoptysis, dyspnoea and chest pain are common symptoms

7. Mesothelioma
Around 2000 new cases per year and almost always fatal, rates are due to peak between 2010 and 2015
Estimated between 2006 and 2020 up to 30,000 people will die from mesothelioma
Estimated around 1% of all males born between 1940 and 1950 will die of mesothelioma
Time between exposure to asbestos and development of disease is an average of 30 years
Medway has one of the highest mortality ratios in England
Poorly recognised disease in public

8. Palliative care
Potentially large population requiring palliative care for end stage respiratory disease
Not all these patients will require specialist palliative care, but palliative care is a right for all patients at the end of life
Relies on team work and education with other specialist teams/professionals

9. Care in the final year of life

10. Symptoms at end stage
Symptoms reported in final year of life (Edmonds 2001)
Symptom
Chronic lung disease
All (%) Very
Distressing (%)
Lung cancer
All (%) Very
Pain
Breathlessness
Cough
Anorexia
Constipation
Insomnia
Low mood

11. Physiotherapy management of fatigue and reduced mobility
Work closely with OT to provide equipment to ease ADL’s
Advice on pacing
Walking aid provision
Advice on gentle exercise and maintaining mobility and exercise tolerance

12. Physiotherapy management of dyspnoea
Education and reassurance
Breathing control
Diaphragmatic breathing
Secretion clearance if appropriate
Positioning advice
Pacing and fatigue management
Work with OT to help ADL’s
Relaxation

13. Medical management of dyspnoea
Assessment and diagnosis of cause of dyspnoea
Treat reversible causes:
• Infection (antibiotics)
• Reversible bronchoconstriction (bronchodilators)
• Pleural effusion (drainage, pleurodesis)
• Anaemia (transfuse)
• Cardiac failure (diuretics, ACE inhibitors etc)
• Lymphangitis carcinomatosis (dexamethasone)
• SVCO (dexamethasone, radiotherapy, stent)

14. Medical management of dyspnoea
Opioids:
• Reduce sensation of breathlessness
• Improvements at doses that do not cause respiratory depression (important for COPD patients)
• Starting dose: morphine 2.5mg PRN or increase by one increment if already on morphine for pain
Benzodiazepines:
• Helps manage fear and anxiety
• E.g. lorazepam 500 micrograms – 2.5mg daily or diazepam 5-10 mg daily
• Sublingual lorazepam 0.5mg – 1mg or oxazepam 10mg – 20mg PRN is useful in management of panic attack

15. Medical management of dyspnoea
Oxygen – useful in some patients but there is no correlation with the degree of hypoxia. It has no role of saturation is normal.
Pareneteral medication – if patient unable to take oral medication, morphine or diamorphine and midazolam can be given.

16. Physiotherapy management of retained secretions and cough
ACBT
Airway clearance techniques including assisted cough where appropriate
Advice on hydration
Nebulisers
Advice on stopping smoking if patient wants to

17. Medical management of respiratory secretions
Nebulised saline
Refer to physiotherapist!
Fruit juice with mucolytic enzymes (pineapple, grape)
Anticholinergic medication generally not used at this earlier stage (occasionally in bulbar MND patients)

18. Management in the last few days of life

19. Recognising the dying patient
Treatable causes for deterioration have been excluded or refused or treatment deemed inappropriate/ineffective
The multiprofessional team agree the patient is dying
The following criteria may apply:
• Patient is bedbound
• Patient is semi-conscious
• Patient is no longer able to take tablets
• Patient is only able to take sips of fluid
Commence the LCP for the dying. If any doubts or concerns please contact the HPCT

20. Respiratory secretions at the end of life
It is important to distinguish terminal secretions from conditions which may require alternative treatments e.g. ventricular failure or pneumonia
General interventions:
• Repositioning of the patient
• Avoiding over hydration
• Addressing family distress
Drug treatment:
• Drugs can reduce death rattle in up to 80% of patients
• Treatment should commence when symptoms become apparent

21. Respiratory secretions at the end of life
Glycopyrronium is the preferred drug because:
• No central side effects
• Potency and efficacy
• Dose: 0.2mg – 0.4mg SC prn and 1.2mg – 2.4mg/ 24 hours by CSCI
Other medications that can be used are:
• Hyoscine butylbromide: 20mg SC prn and 40mg – 120mg over 24 hours by CSCI
• Hyoscine hydrobromide: 0.4mg SC prn and 1.2mg – 2.4mg over 24 hours by CSCI

22. Respiratory secretions at the end of life
Other measures:
Antibiotics (where infected secretions are distressing)
Diuretics (where there is evidence of ventricular failure)
Agents to reduce awareness of secretions e.g. midazolam
Suctioning usually only has a role in severe cases

23. Checklist for the dying patient
Assess medications and discontinue non-essentials
Precribe prn SC medications: analgesia, anti-emetic, sedative and antimuscarinic.
Consider commencing a syringe driver if more than one dose of these medications is required
Discontinue inappropriate nursing interventions such as monitoring vital signs, replace with observations of symptom control. Ensure mouthcare and bowel and bladder care regimes are in place.
Discontinue inappropriate medical interventions such as IV’s and blood tests
Assess patients/familys insight into situation and give appropriate information
Assess patients religious/spiritual needs
Ensure DNAR forms completed
Handover condition of the patient to the on call team