Things to know about end of life care in the community

  • It is possible for patients to return home even if they are receiving complex medications via syringe driver.
  • Careful discharge planning can prevent unnecessary readmission to hospital.
  • Patients and carers want to experience healthcare services as a single system.
  • It can be difficult to obtain injectable medications in the community.
  • Urgent referrals to the community on Friday afternoons are difficult for everyone.
  • Community nurses are usually not allowed to provide ‘hands-on’ care to a patient who is not in an electric bed. Nurses should be able to raise and lower the bed to protect their own safety.
  • Community nurses need written orders for procedures such as inserting or changing urinary catheters and for managing ascitic and pleural drains.
  • Community palliative care services cannot pay for long-term equipment hire.
  • Community palliative care services cannot replicate the services and resources of the hospital environment.
  • Investment in planning is essential for successful discharge.

Achieving an effective discharge

Ensure the patient (or medical treatment decision maker) consents to all referrals.

Start as early as possible during the admission.

Enlist the appropriate allied health disciplines to expedite what can be a complex process.

Identify whether the patient is having active management of their disease, treatment with palliative intent or is actively dying.

Arrange for the Aged Care Assessment Service (ACAS) to assess an older patient whose needs are changing.

Negotiate with the specialist community palliative care service about when they can make their first visit. Do this as soon as possible if the patient needs urgent care. 

Liaise with the regional palliative care consultancy service if you are sending someone home to the country from a city hospital and the patient’s needs are complex. 

Liaise with the general practitioner if the patient needs urgent care, make sure the discharge summary is expedited and send crucial information in the meantime.

Tell staff in aged care facilities and general practitioners about End of Life Directions for Aged Care (ELDAC) – 1800 870 155.

Include in the discharge summary information from:
  • the allied health assessment (depending on the patient’s circumstances) - pharmacist, occupational therapist, physiotherapist, speech pathologist, dietician, social worker or pastoral carer
  • family meeting with the treating team, allied health, palliative care consultancy service, patient and family or carers.

Consider how symptoms will be managed:

  • Provide the patient and carer with a written symptom management plan.
  • Plan for symptoms that may occur in the future and for current symptoms that may worsen.
  • Arrange anticipatory medicines and syringe driver medicines (if a syringe driver is in situ).

Family meetings support successful discharge

Family meetings support successful discharge planning. A family meeting may include the treating team, allied health team members, the palliative care consultancy service, and the patient and family. 

Include an interpreter if the patient or family members don’t speak adequate English. Don’t rely on the patient or family members to interpret. They are already under stress, they may be hearing about concepts and issues that are new to them, and you want to be sure that the patient and family hear exactly what you say.

The purpose of a family meeting is to:

  • hear the patient's and family's understanding of the illness
  • listen to the patient's and family's concerns
  • update the patient and family about the illness and possible options
  • clarify the goals of care
  • revisit advance care planning
  • discuss present and future needs and the community support available to meet those needs
  • clarify the care the family and their support network will be responsible for providing
  • address patient and family concerns.

Give a summary of the discussion and outcomes to the:

  • patient and carer (if appropriate)
  • general practitioner
  • community service
  • residential or disability facility
  • other involved teams.

Limitations of medical treatment

Limitations of medical treatment (also know as a 'goals of patient care summary' or 'acute resuscitation plan') replaces the ‘Not for Resuscitation’ (NFR) orders. It is a medically authorised order to use or withhold resuscitation measures while the patient is in hospital or being transported by ambulance. 

Sensitively inform the family when it is possible that the patient may die in the ambulance. The default option if death in the ambulance does occur is to bring the body back to the hospital. 

While limitations of medical treatment are not for use in community care settings, they can inform advance care planning.

St Vincent's Hospital Melbourne has shared an acute resuscitation plan template.

See more about advance care planning in the Advance care planning section.

Inform the patient and carer of what's next

  • The general practitioner will write ongoing prescriptions.
  • Give the patient and carer the date and location of the next outpatients appointment and transport details.
  • The community service will phone them about planning a visit (if referred). Give the patient and carer contact details. 
  • Keep the patient and family/carer well supported with someone to contact in the hospital's treating team. 

Refer to Therapeutic guidelines palliative care 2016 version 4 on the Clinicians Health Channel at your health service.