When to refer to a specialist community palliative care service

End of life care and palliative care are an integral part of most health professionals’ clinical practice.

Many people in their last twelve months of life do not require specialist palliative care. They may do well with care from their general practitioner, their residential aged or disability facility, and community services such as district nursing and the community health centre.

Refer patients and families to specialist community palliative care if the person:

  • has unstable and complex symptoms
  • has complex spiritual, psychosocial, cultural or bereavement needs
  • is approaching the terminal phase and wants to die at home.

Consult the inpatient palliative care consultancy service if you're not sure.

Find the correct specialist community palliative care service.

Making an urgent referral to a specialist community palliative care service

Make an urgent referral to the specialist community palliative care service when you think the service should:

  • contact the patient or carer immediately after discharge
  • make the first visit within a day or so of the discharge.

The community service's first visit to the patient’s home, and all the related activities, can take more than a working day to complete. Hence it is vital to:

  • obtain consent to make the referral from the patient (if appropriate) or carer as soon as possible
  • contact the service by phone as soon as possible
  • negotiate the date of the first visit.

Urgent referrals may be based on patient or family need, for example, when:

  • the patient has unstable or complex symptoms
  • the patient has a syringe driver 
  • the carer feels very anxious or is frail
  • you expect the patient to rapidly deteriorate
  • the patient is in (or approaching) the terminal phase and wants to die at home.

How to refer to all community services 

Most community services receive referrals via the Service Coordination Tool Templates (SCTT). 

If you are using the SCTT, complete the palliative care supplementary information. Whichever referral form you use, include the following information:

  • demographic information, including who the service should call to arrange the first visit, for example, the non-English speaking patient or their adult child? 
  • carer availability
  • name of the treating team and the name and phone number of a contact, especially if the patient is having disease modifying treatment and it is planned that the patient will return to hospital if unwell, for example, if they have febrile neutropenia
  • relevant medical history
  • history of the present condition, including treatment received and treatment planned
  • relevant radiology and pathology results
  • symptoms and their management, including written guidelines given to the patient and carer
  • summary of family meetings
  • advance care planning discussions
  • nursing needs including equipment arranged and carer education about same
  • written orders for procedures such as insertion of a urinary catheter or management of drains
  • any psychosocial, financial and spiritual concerns (consider verbal handover to appropriate health professionals)
  • any concerns about safety in the home, such as challenging behaviour
  • known drug allergies and reactions to medicines or their ingredients, and the type of reaction experienced.

Nursing needs immediately after discharge

Post-acute care (PAC) services support safe and timely discharge from public hospitals for people with palliative care needs. 

PAC provides short-term services, until the community service, such as specialist palliative care or district nursing, can admit the patient.

Post-acute care provides community nursing, personal and home care. No fees are charged although there may be a charge for extras, such as dressings.

Refer to the PAC service attached to your hospital for needs including assistance with hygiene, syringe drivers, care of catheters, dressings, monitoring of diabetes and administration of regular injectable medications such as insulin or anticoagulants.

Safety

It is the patient’s right to go home, even if the team considers it unsafe.

  • Discuss any perceived lack of safety, and the possible implications, with the patient and carer.
  • Discuss the patient's wish to go home with the relevant community service and inform them of concerns.
  • Consider all options for reducing the risk, for example a personal alarm such as MePACS Personal Alarm Care Service or VitalCall.
  • Ensure the patient and carer are aware of the limitations to care that nursing services can provide. For example, occupational health and safety regulations do not permit nurses to lift patients from the floor as this poses a risk to their safety.

Carer education

Carers are the backbone of care for patients in the home and they need to be ready for the person to be discharged.

Who the patient and carer can contact after discharge

Advise the patient and carer who to contact if they have a question or problem after discharge and before admission to the community service. Advise the patient and carer that:

  • in an emergency they should contact their general practitioner, treating hospital or ambulance.
  • they should direct all questions and concerns about active treatment to the treating team, and give specific names and phone numbers.
  • they should contact the community palliative care service if they would like to be seen sooner than arranged. Provide the phone number. The service will listen to the patient or carer and negotiate a plan. This may result in advice, regular phone contact until admission, or earlier admission.

Tell the facility and the general practitioner about End of Life Directions for Aged Care (ELDAC) (1800 870 155) if the patient is going to a residential aged care facility. 

Once the patient has been admitted to a specialist community palliative care service, the service will provide around-the-clock telephone advice and a nursing visit if it is needed. There are some exceptions to this in rural areas.  Confer with the rural service to ensure you are giving the patient and carer reliable information.

Equipment

  • Assess current and future needs and investigate funding sources. Refer the patient to occupational therapy.
  • Consider an electric bed. Community nurses are usually not allowed to give ‘hands on care’ - for example, a sponge in bed or a urinary catheter change - unless the patient is in a bed with adjustable height. This is an occupational health and safety concern. 
  • Hospitals are required to pay for the first month of hired equipment only and community palliative care services are not funded for long-term equipment hire. It is essential that ongoing costs are discussed with the patient, or carer, or both, before discharge if the patient’s prognosis is expected to be longer than one or two months.

Home oxygen

  • Consider the benefits and burdens of home oxygen. Palliative care patients who have dyspnoea due to mild to moderate hypoxia may obtain symptomatic benefit from supplemental oxygen. However, many obtain the same benefit from cool air movement via a fan or open window.1
  • The presence of dyspnoea does not necessarily mean that the patient is hypoxic and correcting hypoxia will not necessarily lessen dyspnoea.2
  • Management of dyspnoea with medications may be more effective than oxygen therapy but reconsider if the patient or carer holds strong beliefs that oxygen is or will be helpful.
  • Balance the clinical benefits of oxygen therapy with the burdens of dry mouth, restricted mobility, social isolation, risk of pressure areas from the tubing and the cost.
  • Community palliative care services cannot fund oxygen.
  • Smokers are ineligible for home oxygen. They must have stopped smoking for four weeks to become eligible.
  • When prescribing oxygen for the home, order a stroller kit so the patient can get out of the house.

Medicines

  • Most patients in their last twelve months of life will have new medicines. Other medicines may be ceased as the focus turns to comfort. Coach the patient and carer verbally and in written form.
  • Involve the pharmacist.
  • Explore concerns about opioids. Many people have heard the myths about medicines like morphine and palliative care, such as addiction, tolerance and rapid deterioration (see More information).
  • Where possible, try new PRN medicines in hospital so the patient and carer understand their role and effects.
  • Arrange anticipatory medicines.

Breakthrough medicines

Breakthrough pain occurs between regular doses of an opioid. It reflects an increase in pain beyond the control of the regular analgesia. This may be an occasional fluctuation or, if frequent, reflect an inadequate regular opioid dose. An additional (breakthrough) dose of the patient’s regular medicine is given.3 Review pain management if more than two breakthrough doses are given in 24 hours.

Breakthrough shortness of breath requires a similar approach. 

An opioid dose for breakthrough pain (to be taken as required) is calculated as one-twelfth to one-sixth of the total amount of opioid taken in the previous 24 hours .

Take into account:

  • the specific requirements of your patient - for example, age, allergies and kidney or liver impairment
  • medical conditions where certain medicines may not be appropriate 
  • the requirements of your health service.

Catastrophic orders

'Catastrophic orders' is a recognised term for medical orders written in preparation for a likely catastrophic terminal event such as a massive haemoptysis or obstructed airway. If your patient is at risk of a catastrophic terminal event: 

  • arrange catastrophic orders and supply medicines
  • prepare the patient and carer for the possibility of a catastrophic terminal event
  • discuss with the specialist community palliative care service
  • seek help from the palliative care consultancy service for this challenging task.

Take into account:

  • the specific requirements of your patient
  • medical conditions where certain medicines may not be appropriate
  • the requirements of your health service.

Northern Health Palliative Care Service has shared their end of life symptom guidelines, which refer to catastrophic or crisis orders.

Summary guideline for management of symptoms at the end of life

Syringe drivers (continuous subcutaneous infusions)

If the oral route is unavailable, the subcutaneous route is commonly used in palliative care because it is easy and safe to use at home. When the patient is going home with a syringe driver:

  • Notify the general practitioner by phone as soon as possible and negotiate ongoing supply of medicines.
  • Notify the community palliative care service by phone as soon as possible.
  • Negotiate a discharge date.
  • Arrange for return of the hospital’s syringe driver - for example, via a family member - when the community service has replaced it with their own.
  • Refer to post-acute care if the community palliative care service cannot visit before care is needed.
  • Coach the patient and carer about how the syringe driver works and what to do if it alarms.
  • Coach the patient and carer to observe the site and report redness or swelling to the visiting nurse.
  • Coach the patient and carer, if appropriate, how to give subcutaneous breakthrough medicines through a Saf-T-Intima and how to record what they have given.
  • Ensure, on discharge, that the battery has at least 80 per cent life so that it will last until late morning to allow time for the community nurse to arrive before the infusion finishes.

Syringe driver medicines

  • Ensure the patient goes home with enough medicines for at least one week.
  • Include enough medicines to cover breakthrough doses.
  • Ensure the medical orders include breakthrough doses.
  • Arrange follow-up prescriptions, usually with the general practitioner.
  • Arrange ongoing supply of medicines that are difficult to obtain from community pharmacies, such as cyclizine and levomepromazine. This process needs planning because these medicines are costly and hospital executive approval is often required.
  • Ensure the patient and carer have written guidelines on regular and breakthrough medicines.

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

References

1 Palliative Care Expert Group. Therapeutic guidelines: palliative care. Version 4. Melbourne: Therapeutic Guidelines Limited, 2016.

2 Ibid.

3 Ibid.