The following prompts can help address a number of issues before they become a concern:
These points look at patient preferences and the availability of support.
- Has the patient indicated that they want to stay at home to die?
- Do those who live with the patient know about and share that wish?
- Confirm that the plan has been discussed within the family
- Consider young children and others with care needs in the household
- Are there enough people to share the care?
- Consider their availability for around the clock care
- Encourage a roster, with time out periods
- Is it possible to determine the patient's prognosis to help the family plan ahead and marshal their resources?
eg, Is care likely to be needed for hours, days or for a week?
- What is the back-up plan if either the patient or the family find it difficult?
- Clarify and document the plan and ensure that it is realistic and understood by all involved
- Consider whether there are specific services that can support families caring for someone who is dying at home
e.g. night nursing services or volunteers - the local palliative care service can advise
- Provide a letter (or Ambulance Plan) describing the palliative goals of care in case of a triple zero call, clearly stating that the patient is dying and that cardiopulmonary resuscitation is inappropriate
- Check if the patient has a home care package.
This helps to assess the practicalities of care at home.
- Will the patient be able to be cared for safely and comfortably in the home?
- Refer to home nursing or palliative care nursing services, and ask them to teach the family about how to provide care safely
- Confirm how much nursing support is available, specifically, how many visits can the patient have from the nursing support service?
- Assess complex nursing needs that will be difficult to manage at home, for example:
- difficult wounds
- fistulas
- spinal analgesia, etc.
- Consider equipment that may be needed to nurse a bed-bound patient, for example:
- a hospital bed,
- mobility aids,
- commodes,
- other personal care equipment (wheelchair, pressure mattresses, etc.)
- Consider a palliative care referral for an occupational therapist (OT) and/or physiotherapy assessment to advise and organise equipment
- Discuss the option of an in-dwelling catheter to reduce the burden on both patient and family in the terminal phase
- Encourage the family to think about any practical rearrangements that might make caregiving easier or safer, for example:
- moving a patient's bed to a different room, or
- relocating the patient and carers to a different family member's home (remembering however that a move into a different area may disrupt their eligibility for services, so plan ahead with this)
- Organise who will provide the "life extinct" form and "death certificate".
Prompts planning for symptoms and changing circumstances.
- Review long-term medicines - cease any that no longer contribute to the patient’s comfort.
- Consider anticipatory prescribing.
- Discuss with the family how the patient's symptoms will be reviewed and managed:
- Consider whether home nurses will report to yourself
- Explain how often you will visit
- Describe what the palliative care service will do
- Arrange prescriptions in advance and check availability with usual pharmacy
- Plan for predictable symptoms that occur at the end-of-life, which may include:
- Ensure PRN medicines are available in the house for when they are needed. This is best done well in advance as the patient will deteriorate unpredictably.
- Subcutaneous medicines are preferred to ensure continuing symptom control. Use with bolus medicines via:
- subcutaneous butterfly needle, or
- a syringe driver with a 24 hour infusion, or
- a combination of these
- Remember - dying patients are unable to swallow oral medicines
- Arrange for family members to be taught how to give breakthrough doses by the palliative or home nurses
- Check that medicines are available at a community pharmacy, and that the caregivers have an adequate supply to get through after hours and weekends, in particular.
- The Community End-of-Life Medicines List (136kb pdf). was designed as a safety-net for prescribers; ensuring all palliative patients have access to timely symptom control.
- It is expected that some GPs, through personal preferences, will prescribe different medications and formulations.
- With this list in mind, you are encouraged to liaise with the patient's usual pharmacy prior to prescribing, to ensure their preferred alternatives are available.
- Consider whether a plan is needed for high risk problems such as:
- bleeding risk
- bowel or airway obstruction.
- If care needs are complex, or a high risk of bleeding or airway obstruction exists, seek early advice from a palliative care specialist.
- For more on this, go to CareSearch Information for GPs: End-of-life symptoms
Be prepared for a range of questions from information the family while caring and after death.
- Are the carers fully prepared for the fact that the patient will be dependent and bed bound?
- Do the carers need information about eating and drinking in the palliative care situation?
For instance:
- that loss of appetite is a common and predictable feature of advanced disease?
- that swallowing deteriorates with the approach of the terminal phase?
- do they need ideas about what, and how much, to offer the patient to eat and drink, and how to do this safely?
- Do the carers need information about physical changes that occur as the patient is dying?
For example:
- changes in breathing patterns, including the possibility of terminal secretions ("death rattle")
- changes in skin colour and temperature
- changes in level of consciousness, including the possibility of terminal delirium
- Ensure that the family has access to twenty four hour phone advice about symptoms or changes in the patient's condition and that everyone providing care knows who to contact.
- Do the caregivers need information about what to do after the patient dies?
For example:
- encourage them to think about choosing a funeral director
- reassure them that there is no urgency to ring anyone after the patient dies
- ensure that they know which doctor has agreed to certify death and the arrangements for contacting them
Page updated 19 July 2018