Carers Australia describes a carer as a person who provides unpaid care and support to a family member or friend who has a disability, mental illness, chronic condition, terminal illness, an alcohol or other drug issue or who are frail aged.  Carers provide a significant amount of care for people with a life-limiting illness.  The National Palliative Care Strategy explicitly acknowledges the role of carers and the need for their health and wellbeing to be supported as part of holistic palliative care. 
Caring in a palliative scenario can be complex. Carers can be challenged when dealing with issues such as pain management, managing cognitive decline, increased functional dependency on the carer, and ultimately their bereavement following the death of the person for whom they have cared.
While the needs of people receiving palliative care appear to be well-documented and include practical, emotional, physical and existential domains of support; the needs of family carers are less well discussed or addressed.  Care may be provided over a long period of time. Home is often the preferred environment, and carers and families need to receive sufficient support to continue to provide care. [8,9]
In developed countries, most deaths occur in people over the age of 65 years. Global ageing and increases in long-term illness will see more patients with a wide variety of diagnoses needing palliative care towards the end of life.  Most older adults prefer to die in their own home , however, it is more common in a hospital or increasingly in an aged care setting. [10-12] More research is required to identify how end-of-life care can be better supported in an institutional setting.
Palliative services are often more geared to the support of carers for people with cancer, yet there is an increasing need to assist carers of people with non-malignant illnesses. [3,5,12,13] Carers may have needs such as the sharing experiences, anxiety of managing symptoms and decision-making, being isolated, maintaining a relationship outside of the role of the ‘carer’ and access to support which could include physical, emotional or financial assistance. [5,7,8,13-15]
Supporting carers in their role as carer is an important part of palliative care. While providing informal care can generate strong positive emotions, caring can be extremely stressful both mentally and physically. [3-6] Carer ‘strain’ or ‘burden’ is a common experience. Carer burden is generally defined as the impact on a person’s physical health, psychological and emotional health, social connections, and financials status as a result of taking on the role of carer.  Studies show that type and severity of a person’s illness may be associated with degree of carer burden.  Young female carers, culturally and linguistically diverse (CALD) carers, and carers in socioeconomic disadvantage may also be more susceptible to carer burden.  Carers of older people may themselves be of a similar age possibly with health problems and will therefore have particular needs for assistance with caring.  Ultimately support strategies need to be individualised and adapted to the disease trajectory, diagnosis and the pre-existing support network for the carer.
Carers often look to health professionals to aid their understanding of the disease and necessary symptom management including how to manage medications, acute episodes and end of life planning.  Carers often seek practical support with decision-making.  Regular contact and reassurance from the palliative care team, written information and access to equipment and physical aids, social support networks, self-care strategies, respite care and relevant support groups may reduce carer burden. [17,18] When health professionals recognise the needs and concerns of a carer, it can provide reassurance and contribute to the positive aspects of caring. 
It should be recognised that carer grief can be experienced at different points along the care journey, as early as at diagnosis to years after the death. [12,14] Grief should therefore be considered in palliative care planning. Grief may also be experienced in conjunction with feelings of guilt, ambivalence and relief which can be distressing to family carers.  Information on grief and bereavement can be found in the Bereavement pages.
Overall, the evidence is of adequate quality, with most reviews comprising of qualitative or mixed method studies.
Page updated 08 July 2021