Who carries the extra load? The added responsibility of end-of-life care for rural families

Abstract

There are over 7 million Australians (28%) living outside of major cities,¹ and these people have poorer health outcomes and poorer access to and use of primary health care services.² Just like most areas of health, there are common barriers to accessing end-of-life health care for rural Australians including geographical distance to services, lack of stable workforce and difficulty accessing culturally appropriate care.^3-5 While it is more difficult to access end-of-life health care for rural Australians, we know that the proportion of older Australians is higher in rural Australia so there a is significant need for end-of-life care.¹

When access to end-of-life health services is more challenging, who picks up the increased load? Like many areas of social and health care, family, friends and community networks end up playing an increased role in end-of-life care in rural areas.³ The family ‘carer’, the person who is most involved in the person's day-to-day care, is even more vital in a rural area. Compared to carers from urban areas, rural carers are more likely to be friends or distant relatives.⁶

Rural carers report exhaustion, lack of self-care and a need for respite.⁷ This may be due to the fact that rural carers are likely to do more of the care tasks themselves (rather than using services).⁸ A quarter of rural carers want more physical support with caring.⁶ They report unmet needs such as treatment near home (37%), help with economic burden (32%) and concerns about the person being cared for (32%).⁹

A review of studies³ showed that rural end-of-life patients receive fewer home visits from doctors, less home care services, less palliative care, less respite and less allied health; however, there was increased reliance on general practitioners, pharmacy and emergency hospital. Rural carers report that local services have longer wait times, high turnover of staff, and families received late referral to palliative care.⁴

Rural carers of cancer patients (60% of whom required end-of-life care)⁴ report that one of the biggest stressors is travelling for health services highlighting dealing with the stress of going to the city, organising the actual travel and time away from work, family or the farm. Rural carers also find metropolitan health services difficult to navigate.¹⁰ Health professionals do not always consider the effort involved in travel which may cause additional inconveniences and stress for rural carers.⁴ Rural carers also report a strong connection to their community and miss being away from their community when travelling for health services.¹⁰

Some rural carers hold an attitude of stoicism or self-sufficiency that prevents them asking for support.¹⁰ Others report feeling too ‘busy’ for emotional support and feel that ‘it is not about me’.⁴ The caring role can also lead to social isolation and loss of important social connections.⁴ This can be compounded by carers living geographically a long way from close relatives or adult children.⁷

Around a fifth of rural carers report needing more information⁶ and particularly access to rurally relevant information including planning to come to the city, palliative care information, applying for disability parking and carer payments.⁴ The importance of additional communication during transitions in locations of care has also been highlighted.³

There are many advantages to caring in rural communities, including high levels of trust in their local services, receiving more personalised care and listening to local service recommendations, which may positively impact the uptake of referrals to palliative care.⁴ Many rural people also reported the importance of community informal support in helping manage the demands⁴ and the sense of connection that comes from living in a rural area.⁷ The rural community is great at helping solve problems in unique ways to help local people who are facing end-of-life challenges.⁷

Rural carers are also more likely to accept death.³ In comparison with carers in metropolitan areas, rural carers are more also likely to report the experience of end-of-life caring as positive and report higher comfort levels of the patient in the last 2 weeks of life.⁶

The National Palliative Care Standards for Specialist Palliative Care¹¹ state that the carer (and family) be included in needs assessment, provision of support, and provision of guidance about the carer role. It is clear more needs to be done to ensure the standards are met in rural areas.

St Vincent's Hospital Melbourne (through palliative care project funding by the Australian government) developed the CarerHelp website which assists thousands of Australian carers each year, of whom many are from rural areas. CarerHelp prepares carers by providing a wide range of factsheets on end-of-life caring topics such as how to manage common symptoms, how to set up services, planning ahead and having important conversations and the importance of self-care while caring. There are video resources, resources in other languages, and resources for Aboriginal and Torres Strait Islander families.

St Vincents's Hospital Melbourne in partnership with the National Rural Health Alliance, Grief Australia and CareSearch (Flinders University) is now extending the rural focus through the CarerHelp Rural Connect project. CarerHelp is reaching out to rural carers and communities to offer new resources and online sessions with a health professional to help them prepare for caring for someone at the end of life and prepare for the challenges they may encounter as carers in rural or remote area. For more information, visit: www.carerhelp.com.au.

The National Rural Health Alliance is proud to be part of this project which will deliver practical and vital support to our rural carers and the loved ones that they care for in rural communities.

Kristina Thomas: Conceptualization; writing – original draft; writing – review and editing. Margaret Deerain: Writing – review and editing.