Supporting the families of seriously ill patients

By Regina Kendall, Nurse Practitioner, Grampians Regional Palliative Care Team and Kristina Thomas, Senior Research Fellow, Centre for Palliative Care, St Vincent’s Hospital 

Source: APNA Primary Times Summer 2022-23 (Volume 22, Issue 2)

Many nurses in primary health care will be supporting families who are caring for a seriously ill person. It is hard to know how to best prepare them for the caring role and prepare them for the imminent loss of a loved one. Nurse Practitioner, Regina Kendall, shares her tips on supporting families as well as a new online resource specifically for families of seriously ill patients. 

Caring for someone who is at the end of life can be demanding, both physically and emotionally. We know that family carers are at greater risk of mental and physical ill-health and are likely to be impacted financially. Many families in rural and regional areas are at further risk as they lack access to health and support services. So how do we ensure that families are supported during this time? 

Nurse Practitioner, Regina Kendall (Grampians Regional Palliative Care team), refers families to www.carerhelp.com.au, which is a nationally funded website with useful information on caring for a seriously ill person. She also prints off the fact sheets and templates to give to families, which helps start discussions about what to expect and how to prepare for when a person is dying. In an ideal world, all families would have access to specialist palliative care services, but we know that this is not the case. CarerHelp can help ensure that all families have access to high-quality palliative care information at the time they need it most. 

CarerHelp resources include videos of health professionals speaking about end-of-life care issues, such as understanding pain medicines, guidance on offering comfort to the dying person, body care after death and tips for managing grief. CarerHelp has fact sheets on a range of topics, including symptom management, emotional care, finance matters and having important conversations. It also has useful templates to help carers keep track of important information, such as medicines, appointments and emergency contacts. All resources are free and can be easily printed and used in your practice with families. 

‘What I like is that the information is organised into different pathways so you can direct a family who has recently had a diagnosis of advanced disease to the “Caring when death is a possibility” pathway. They will have access to information about tips from other carers, prompts about what to ask the doctor, and thinking about advance care plans. However, you can direct another family who are supporting their loved one during the terminal phase to a different pathway and they will get access to a video of a doctor stepping them though the dying process and information on body care after death. It is important to support carers by providing information that is relevant to their needs at that time. It also encourages carers, who want to, to look ahead and begin to prepare themselves for future caring needs.’ — Regina Kendall, Nurse Practitioner 

Regina’s top tips for working with families who are caring for someone at the end of life are: 

1. Talk to families about the location of care – If they are caring for the person at home, consider what supports they might need to be able to continue caring at home as the person’s condition deteriorates (e.g., the My Aged Care website, in home services, equipment, family and friends that can assist, specialist community palliative care teams). 

2. Encourage the family and person who is seriously ill to have those important conversations – What are the person’s end-of-life wishes? Does the person have an Advance Care Plan? This will allow the family to know what the person wants for their end-of-life care and will help families make the right decisions when the person is no longer able to communicate their wishes. 

3. Focus on the carer’s needs and well-being – Explore with the carer how they are coping and how important it is that they get some regular respite to look after themselves. It’ important that they build in time to go for a walk, see a friend, or attend their own health-care appointments. 

4. Planning ahead – Everyone benefits if they know what to expect and have a plan in place. Encourage the carer to think about what is likely to happen over the coming months and develop a plan to support them. Consider getting ready from a practical perspective (getting finances in order, applying for carer’s payments, changing names on bank accounts, funeral planning) but also preparing them to recognise when a person’s condition is deteriorating and how to care for a dying person. 

We understand that carers have different cultural backgrounds and different needs, so CarerHelp has recently released resources in nine other languages, resources for Aboriginal and Torres Strait Islander peoples, and a section for LGBTQI+ communities. 

CarerHelp is a valuable resource for primary health care nurses working in a range of contexts. We recommend that you have a look at the site so that you can provide greater support to families of seriously ill patients.