At any one time, there are thousands of Australians caring for a partner, family member, or friend who has advanced cancer. Transition from curative treatment to supportive care can be difficult for patients, their families, and health professionals. It is important to consider ways to support patients and their families through a diagnosis of advanced cancer and beyond.
As someone’s illness advances, they require more care and support with daily life such as personal care, meals, organising medicines and appointments, and emotional support. Family members (or friends) who take on this role are impacted in many ways by the physical demands of caring and the emotional toll that accompanies the loss of a loved one. As a result, family carers are often at risk of increased physical and emotional issues.
Most people in Australia want to know their prognosis and plan for their end of life care. We also know that families who are aware of the prognosis and are more prepared for end of life, ultimately have better outcomes. With that in mind, health professionals are encouraged to discuss the patient’s prognosis (including the possibility of death), goals of care, and the families’ role in the person’s care. This will assist the patient and their family to think about what is most important to them at this time, prioritise, prepare and also assist the family to make decisions on behalf of the patient if required.
Health professionals may also consider providing families with trustworthy information to prepare them for their caring role. CarerHelp (www.carerhelp.com.au) is an Australian National website which has freely accessible information and resources to support families. There are videos that carers can watch and many factsheets and templates on key aspects of caring for someone with advanced disease that can be printed and given to families. There is information on a range of topics including, self-care, symptom management, recognising dying, caring for a dying person, and what to do after the death.
Other ways to support family carers are:
- Discuss the likely needs of the person as the disease progresses. This may include discussing where the patient should be cared for and whether the family are in a position to care for the person at home. It is important to consider the main carer’s health and the availability of services in the area. Ideally this is an ongoing conversation and checking in on the families’ health and wellbeing is also a priority.
- Put services and supports in place to support the patient and family. If the patient wants to be cared for at home they will need lots of support. The family carer often picks up most of the caring load but it is likely that they will need additional support and opportunities for respite. Discuss with the family what in-home services may be needed and how they might access these services. Discuss if there are respite options available and encourage the family carer to use them. Discuss what other community and social supports are available for family carers to utilise.
- Refer the person to the local palliative care service early and discuss this with the patient and family. People can be fearful of palliative care so it is useful to remind them that palliative care is a way of maximising quality of life and ensuring that the patient and family are well supported. Palliative care is not for the last weeks of life but is useful from the point of diagnosis of advanced disease. Palliative care can assist with symptom management, reviewing medicines, psychological and spiritual support, setting up in-home care and equipment, and bereavement support.
- Provide culturally appropriate and tailored information on death and dying to diverse populations. Our cultural identity and beliefs play an important part in our understanding of death and dying and therefore families need culturally appropriate information at this time. CarerHelp has information in nine other languages as well as translated English versions (which are culturally sensitive) available on key topics around caring for people with advanced disease. Have a look at the CarerHelp Communities page to see the resources for diverse families.
Many families struggle with caring for someone with advanced cancer and require information and support about how to manage this difficult time. For resources for families, visit www.carerhelp.com.au.
Dr Tina Thomas, Senior Research Fellow, Centre for Palliative Care, St Vincent’s Hospital Melbourne
Tina has over a decade of research experience in exploring the needs of family members who are caring for someone with advanced disease. She has been involved in evaluating carer interventions, managing multi-site National research studies, and now is managing a National Palliative Care Project. Her background as a qualified psychologist provides a useful context for understanding the psychosocial wellbeing of carers.
