Provide Palliative Care
Palliative care is person and family-centred care provided for a person:
- with an active, progressive, or advanced disease
- who has little or no prospect of cure
- who is expected to die
- for whom the primary goal is to optimise the quality of life.
Palliative care helps people live their life as fully and as comfortably as possible with a life-limiting or terminal illness. It identifies and treats symptoms which may be physical, emotional, spiritual or social. [1]
Providing palliative and end-of-life care at home seeks to ensure the best quality of life for an older person when death is inevitable. Palliative and end-of-life care is integrated into the overall care of an older person. This also involves support of their family and carers.
Receiving palliative and end-of-life care at home can:
- increase quality of life, [2]
- reduce the need for hospital-based care [3] and
- reduce emergency presentations in the last year of life. [4]
People are more likely to die in their own homes if:
- They prefer a home death.
- They are supported to die in the home setting.
- There is an advance care plan or 'do not resuscitate' order in place that details the preferred place of death.
- An informal caregiver is present and has received adequate education about the caring role. The informal caregiver will have to have a strong ability to cope, manage medications and symptoms, and support the person's wish to die at home.
- Cancer is the cause of death rather than some other cause.
- They are supported to die in the home setting by the involvement of specialist health practitioners in their care or a multidisciplinary palliative care team.
- They receive an early, rather than late, referral to a palliative care service.
- A person with dementia living at home has strong social networks and receives personal and nursing care support from home care providers. [5]
The older person’s care plan should be updated to reflect their palliative and end-of-life care needs. The four domains identified in the Assess Palliative Care Needs section of the ELDAC Home Care Toolkit are also used here, to demonstrate how to meet the palliative and end-of-life care needs of the older person and their family and carers at home.
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Physical wellbeing
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Social and occupational wellbeing
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Psychological wellbeing
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Spiritual wellbeing
This section includes links that provide a range of information on the management of common symptoms, including examples of caring@home resources that can be used to educate and support family and carers to manage a range of physical symptoms at home.
Appetite Problems
- palliAGED has downloadable Practice Tips available for common problems:
Bowel Problems
Delirium
Difficulty Sleeping
Dyspnoea (Breathing Problems)
Eye Care
Fatigue
- CareSearch Clinical Evidence has information on fatigue.
Nausea
- caring@home have a tip sheet that can be used to educate and support family and carers on how to recognise and manage nausea or vomiting at home.
- CareSearch Clinical Evidence has information on nausea.
- palliAGED has suggestions for the best course of action and developing a treatment plan for nausea.
Oral Care
Pain
Wound and Pressure Care
Consider the whole family and carers as the unit of care. When addressing social and occupational wellbeing for an older person with life-limiting illness, it is important to understand their concerns in relation to their family and carers, emotional and social support, and any practical issues.
Providing person-centred care supports quality of life for the older person and enables people to live meaningful life based on what they value.
Older people with life-limiting conditions frequently experience psychological concerns, such as depression or anxiety, which may be shaped by their:
- mood and interest
- adjustment to illness
- fatigue
- resources and strengths
- pain (total pain)
- pre-existing mental illness.
After identifying that an older person has significant psychological needs:
- Consider the role of additional psychological intervention for older people, such as referral for psychological support and counselling through psychologists/social workers, or specialist mental health services.
- Consult with other relevant health professionals such as their GP, about appropriate use of medication, where this may be indicated for an older person.
For guidance about responding to psychological needs:
It is important to understand a person’s beliefs, cultural perspectives, and ways of finding meaning and purpose. Record and share the person’s cultural and spiritual needs with the team. This will help care workers and clinicians to be sensitive, respectful, and inclusive in their care of the older person and their family and carers.
- palliAGED has downloadable Practice Tip sheetss on Spiritual Care for Nurses (239kb pdf) and Careworkers (305kb pdf).
- The Agency for Clinical Innovation has videos on spiritual and cultural aspects of palliative and end-of-life care, including the place of spiritual care at the end of life.
- Eliciting an older person’s life biography can assist in providing person-centred care and meaning making. This is particularly for people living with cognitive impairment or dementia. A range of tools can be used to create the person’s biography. The Lasting Tale webpage from Palliative Care Australia (PCA) includes resources such as a free audio life story app and examples of life story questions to ask older people.
- The ELDAC Home Care App is designed to help care workers to provide palliative and end of life care to older people at home. The App has six sections:
- Plans for end of life
- What should I say?
- As things change
- When someone is dying
- Supporting families and carers with their grief
- Looking after yourself.
- Watch the ELDAC Home Care Toolkit educational video on Assess Palliative Care Needs to learn how to respond to the four domains of wellbeing used in a palliative care assessment, and recognise the importance of care planning to support person-centred, holistic palliative and end-of-life care.
- Listen to the ELDAC Podcasts – Episode 3: Managing polypharmacy in aged care and Episode 5: When to refer to specialist palliative care.
- Use the ELDAC Case Study on Ravi to build your understanding of how to provide palliative and end-of-life care at home across the framework consisting of four wellbeing domains, including physical, social and occupational, psychological and spiritual.
- caring@home offer useful practical resources to develop your capacity to deliver palliative and end-of-life care at home, as well as to guide family and carers including:
- The ELDAC Our Diversity webpages have information and resources about providing palliative and end-of-life care for diverse groups and their specific needs.
- Select translated resources are available from caring@home in 9 different languages.
- The free Equip Aged Care Learning Modules are produced by the Wicking Dementia Research and Education Centre at the University of Tasmania. A range of aged care related topics are covered including palliative and end-of-life care.
- The Agency for Clinical Innovation hosts a free palliative care video library. These videos were developed with Australian healthcare specialists to assist in the delivery of appropriate palliative care. There are videos on topics for physical and clinician, psychological, and spiritual and cultural.
- palliAGED offers the Education on The Run training videos. These videos were developed for aged care workers and cover topics related to providing palliative and end-of-life care:
- The palliAGED Introduction Modules for Aged Care for aged care nurses offer training on understanding palliative and end-of-life care symptoms and care issues. There is a companion manual with more details about the education fundamentals. The topics related to providing palliative and end-of-life care include:
- Person-centred care
- Pain Management
- Symptom Management
- Care Issues.
caring@home
This website offers a range of tools, videos and information to support families and carers including:
- Tip sheets about how to identify and manage various end-of-life symptoms.
- A short video on how to recognise breakthrough symptoms, and rate the distress they cause.
CarerHelp
This website has information, tools and resources for providing care at home.
- Tips for managing common symptoms at end of life has information about managing some of the most common symptoms at the end of life, regardless of the type of disease. These include breathing changes, confusion or delirium, incontinence and pain.
- Videos about the realities of providing palliative and end-of-life care for someone at home, including pain relief.
- Home Care Tips have a range of links to resources with practical tips for dealing with common care needs. These include managing medication, incontinence products, using a commode, moving someone on a bed, and others.