The trajectory of heart failure is complex, with periods of stability followed by decompensation. Clinical expertise should be used alongside prognostic indicators to assist the clinician to consider a palliative care approach.
- This could involve placing your patient on the palliative care register with a view to changing the focus of care towards palliation of symptoms rather than prolonging life.
- Specialist advice is available to guide primary care management of patients with more complex needs from the cardiology CNS and specialist palliative care services
- Remember patients with devices such as Implantable Cardioverter Defibrillators (ICD’s) may need sensitive and timely discussions around deactivation of the device. Advice can be obtained from the Cardiology team about this process.
Remember patients with devices such as Implantable Cardioverter Defibrillators (ICD’s) may need sensitive and timely discussions around deactivation of the device. Advice can be obtained from the Cardiology team about this process. See Implantable Cardiac Devices – RefHelp (nhslothian.scot)
Who to refer:
Patients who are expected to die from their condition within the next 12 months. Indications that this may be the case include:
- Repeated hospital admissions
- Continued symptoms despite optimal treatment
- Difficult physical or psychological symptoms despite optimal tolerated therapy
- Deteriorating renal function
- Evidence of hyponatraemia
- Progressive weight loss (Cachexia)
Who not to refer:
- Patients whose disease is stable
- Patients whose symptoms you are able to manage satisfactorily
- 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
For Heart failure treatment advice contact the Cardiology Team: https://apps.nhslothian.scot/refhelp/Cardiology/HeartFailure
Heartfailure.nurseservice@nhslothian.scot.nhs.uk
IMPACT An Edinburgh based Community (Edinburgh HSCP Only): Long term condition team, to improve patient care and reduce admissions https://apps.nhslothian.scot/refhelp/guidelines/IMProvedAnticipatoryCareandTreatmentIMPACT.aspx
Scottish palliative care guidelines on breathlessness: https://www.palliativecareguidelines.scot.nhs.uk/guidelines/symptom-control/breathlessness.aspx
Palliative care Kardex: https://apps.nhslothian.scot/refhelp/guidelines/ResourcesLinks/anticipatory medication.pdf
Hospital at home: Hospital at Home (nhslothian.scot)
Chest, Heart and Stroke Scotland https://www.chss.org.uk/
Voice of Carers Across Lothian 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
