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It can be confusing knowing all the different parts of the health care team. In this factsheet we describe the main services that are involved when a person is at the end of life.
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This refers to the hospital and all staff that work at the hospital (doctors, nurses, social workers, allied health, pastoral care). The person you are caring for may have outpatient appointments (at a hospital clinic) to manage their illness. They may also be referred to the hospital palliative care team for management of symptoms or end of life care. Some people will be admitted and cared for in the hospital (or hospice) at the end of life, either for a short period of respite or for a longer period up until death. You are still able to visit regularly and be involved in their care. Hospitals can be very busy places so you may need to be assertive to get your questions answered and your requests met. If the person’s symptoms are well managed and if there is a safe place for the person to go, many people at the end of life will be encouraged to be cared for at home (or in an Aged Care Facility).
It is essential that the person you are caring for has a GP involved in their care. The GP is the person to contact if you are worried about anything to do with the person’s care such as new symptoms or a decrease in the person’s mobility. The GP can prescribe medication (and other treatments) and can also assist you to arrange additional care in the home (such as a palliative care nurse). Some GPs will also visit their patients at home.
You should also have your own GP and regular health checks, as it is really important your own health is maintained and any health need are properly addressed.
As the person becomes more unwell, in-home nursing services will be necessary. Nurses can help with symptom management, wound care, organising equipment and coordinating care.
The cost of in home nursing can be free if part of a community palliative care service, may be covered by an aged care package (this requires an assessment (www.myagedcare.gov.au), NDIS if you are under 65 (this requires an assessment) or you can pay for in-home nursing privately. Discuss with your GP how to access in home nursing and whether a referral to a community palliative care service would be appropriate.
To find appropriate services in your area:
Community palliative care provide in home support to people with advanced disease (and their families). They often have many different types of health professionals including palliative care nurses, palliative care doctors, social workers, grief counsellors and pastoral care workers. They focus on making sure the person is comfortable and the family are supported. They often will be able to assist you to access in-home equipment.
The pharmacist is the person who fills prescriptions for medications. They can answer your questions about how to take the medications and on possible side effects. It is a good idea to develop a relationship with your local pharmacist. They can be a great resource for information on medicines as well as equipment for caring home (such as incontinence pads).
Personal care services involve trained people (not nurses) coming in to your home to assist with showering the ill person. This can be very helpful if they are not very mobile or not very cooperative. These services can be part of an aged care or NDIS package or paid for privately. You may want to check your local council as they also provide some services.
Consider organising a cleaner or assistance with meals. This can mean less for you to do so that you can spend time with the person you are caring for. These services can be part of an aged care package or paid for privately. You may want to check your local council as they also provide some services.
These include physiotherapists, occupational therapists, psychologists, social workers, dieticians, speech pathologists and more. They can be part of the hospital team, part of the community health services, or privately run services. As the person becomes more unwell they may need assistance with their diet, swallow, mental health, or mobility. In addition, the allied health team may be able to help you with your own needs, such as mental health and organising finances and carer payments. Your GP may be able to assist you with a referral to allied health.