Information
All patients with advanced progressive respiratory disease (including COPD, interstitial disease, bronchiectasis, respiratory failure and cancer) reach a stage of illness where comfort and symptom management become increasingly important and disease modifying treatment less important
Palliative care can also contribute towards helping a patient adjust their treatment goals and make plans for anticipated deterioration
This change in focus is often supported by primary care teams but may be enhanced by palliative care referral especially for patients with complex symptoms or other needs.
Who to refer:
- Patients in palliative phase of illness (the “surprise” question – would you be surprised if the patient died in the next 12 months?)
- Two or more of the following:
- Severe airways obstruction (FEV1 < 30%) or restrictive
- Deficit (vital capacity < 60%, transfer factor < 40%)
- Meets criteria for long term oxygen therapy (PaO2 < 7.3 kPa)
- Breathless at rest or on minimal exertion between exacerbations
- Persistent severe symptoms despite optimal tolerated therapy
- Symptomatic right heart failure
- Low body mass index (< 21)
- More emergency admissions (> 3) for infective exacerbations or respiratory failure in past year.
Who not to refer:
- Patients whose disease is stable
- Patients where you would be surprised if they died in the next 12 months
- Patients who do not accept a palliative approach to their illness
- Patients who have expressed a wish to have no extra help.
How to refer:
Referral details for the different Palliative Care services are available at Palliative Care – Specialist Palliative Care
Scottish palliative care guidelines on breathlessness
https://www.palliativecareguidelines.scot.nhs.uk/guidelines/symptom-control/breathlessness.aspx
Palliative care Kardex:
Hospital at home
Hospital at Home (nhslothian.scot)
Community Respiratory Team
Edinburgh Community Respiratory Team (nhslothian.scot)
Midlothian Community Respiratory Team (nhslothian.scot)
Home oxygen
https://apps.nhslothian.scot/refhelp/Respiratory/OxygenTherapy
- Chest, Heart and Stroke Scotland
- British Lung Foundation
- https://www.vocal.org.uk/
- SPICT. Future Care Planning REDMAP pocket guide https://www.spict.org.uk/wp-content/uploads/2023/10/REDMAP-cards-for-staff-September-2023.pdf
- Ihub. Future Care Planning Toolkit https://ihub.scot/project-toolkits/future-care-planning-toolkit/future-care-planning-toolkit/
- NHS Inform. Future Care Planning – https://www.nhsinform.scot/care-support-and-rights/decisions-about-care/future-care-planning/
- TURAS Learn. Realistic Medicine – Having Realistic Conversations https://learn.nes.nhs.scot/60442