Carers are the backbone of care for patients in the home at the end of life. There may be just one, or two or three, or a crowd of carers. They may get on well with each other or not well at all. They may include a spouse or partner, child or children, friends or neighbours.
People become carers for different reasons. Some want to, and some feel they should. Some feel it's expected. Sometimes it’s what their relative or friend wants. Some people are unwilling or unable to be carers.
Many carers find the experience of caring to be rewarding and meaningful. Sometimes, however, carers consent to providing care without fully understanding what it will involve and what it will mean for their life. Sometimes the needs and expectations of the patient and carer differ, and this may not have been openly discussed, which can cause problems at home and disrupt care.
Carers are likely to experience a range of emotional reactions. They may feel overwhelmed, worried, angry, anxious or confused.
Preparing the carer for care at home
Consult with the carer on all aspects of discharge planning.
- How do the patient’s needs and wishes sit with the carer’s needs and wishes?
- Has a medical treatment decision-maker been appointed?
- Who has traditionally made decisions in the family and who is the main carer?
- What are the expectations of the carer?
- How is the carer’s mental and physical health?
- Does the carer live with the patient?
- Is the carer an adult?
- Does the carer have other caring responsibilities, for example an elderly parent or children?
- Is there conflict in the family?
- Are there financial implications for the carer? Is the carer able to work? Is the patient the breadwinner?
- The home situation, such as who else lives there
- Are there other options for care?
Enlist the help of the palliative care consultancy service, allied health team, or both, if working with the carer is challenging.
Introduce the idea that care arrangements can change and options are available. Even if the carer has looked after someone at end of life before, each experience is likely to be different. The carer can change their minds if things don’t work out. Options depend on the patient’s condition and prognosis and may include:
- home, with increasing professional support as the patient's condition deteriorates
- community care services for older people and people with disabilities
- sharing the care with family and friends, underpinned by a roster
- inpatient palliative care for planned respite, management of challenging symptoms or dying phase
- care in a residential facility.
Be honest and realistic about the level of support professional agencies can provide. For example,
- team members of the specialist palliative care service will provide intermittent visits, depending on the patient’s and carer’s needs
- community nursing may visit to help the patient shower three times per week
- specialist palliative care services provide 24–hour phone advice and support and a nursing visit after-hours for urgent matters
- the carer is always present while professional services visit intermittently, usually during office hours.
Encourage carers to request and accept offers of help from their family, social and community networks.
Coaching carers in physical tasks
It may be helpful for the carer to take over aspects of care under supervision in a ‘trial of care’. This will make the expectations of the carer explicit and will either build competence and confidence or prompt a change of plan. Tasks may include helping the patient to:
- transfer from bed to chair
- manage incontinence
- have a shower
- eat and drink
- take tablets
- relieve symptoms with physical measures, such as a fan for shortness of breath, or breakthrough medicines
- carry a
Explore concerns about assisting with the administration of opioids. Many people have heard the myths about medicines like morphine causing addiction, tolerance and rapid deterioration in people at end of life.
Provide clear, concise and culturally appropriate written materials to guide the carer at home - see examples in the More Information section. Materials may include:
- personalised and specific symptom management guides in the required language
- a carer's safety and information kit with written and pictorial guidelines
- websites for carer support
- information about suppliers and funding avenues for equipment, electric bed, home oxygen and incontinence products.
Who carers can contact
Tell the carer who they can contact, and why, once patient is at home. Provide the following advice as appropriate.
- Contact their general practitioner or treating hospital.
- Direct all questions and concerns about active treatment to the treating team. Give the carer a specific name and phone number of a member of the treating team.
- If the patient has been referred to a community palliative care service, and the patient and carer would like to be seen sooner than arranged, contact the service. The service will negotiate a plan with the patient or carer. This may result in earlier admission or include advice and/or regular phone contact until admission
- Once the patient has been admitted to the specialist community palliative care service, the service will provide around-the-clock telephone advice and a nursing visit for urgent matters. There are some rural exceptions to this. Confer with the rural service to ensure the information you are conveying is reliable.
Community palliative care services - know what they will provide
If you are referring the patient to a community palliative care service, ask the service what they will provide. Know what the service can do - for example, community palliative care services vary in their capacity to arrange overnight nursing respite at critical times. Ask the service what is possible.
Carer payment and carer allowance
Inform the carer of the carer payment and carer allowance. There are two types of payment that the carer may be able to access:
- Carer payment - the carer payment provides an income support payment (similar to a pension) for people who are unable to participate in the paid workforce because they are caring for someone. It is permissible to work up to 25 hours per week, including travel time, while receiving these benefits.
- Carer allowance - the carer allowance provides an income supplement payment for people who provide daily care. It can be paid even if they are working or on top of pensions. It is not means tested.
Advise the carer to obtain ambulance cover.
- It is essential that palliative care patients have ambulance cover.
- Some patients, especially migrants and refugees, might be unaware that calling the ambulance without cover will incur large costs. Even for health care card holders it is advisable to have ambulance cover because certain services may not be covered.
- There is a 14-day qualifying period for emergency transport resulting from a preexisting medical condition and for all non-emergency transport for new and reinstated members.
Impact on carers
Acknowledge the changes in the carer's life as a result of the patient's illness, as well as the losses and subsequent grief.
Emphasise the need for the carer to look after themselves. This may include:
taking time out
getting enough sleep
requesting and accepting help
protecting their back
recognising their limitations.
Check that the carer and you are on the same page. What have you missed or underestimated? Ask:
- What have you understood from our discussion today?
- What haven't I covered?
- What's been the most important part of our discussion for you?
- What are your main concerns?
Refer to Therapeutic Guidelines Palliative Care 2016 Version 4 on the Clinicians Health Channel at your health service.
Resources for carers
Reviewed 16 September 2022