Good quality end of life (terminal) care can be delivered in a residential aged care facility if staff are adequately trained and resourced.
This will mean that residents can remain in familiar surroundings, cared for by staff and with other residents they know, rather than move to the unfamiliar surroundings of an emergency department or hospital ward.
End of life care:https://www.alzheimers.org.uk/get-support/help-dementia-care/end-life-care#content-start
This page explains what happens when someone in the later stages of dementia is nearing the end of life, and when they die.
Recognising end of life during COVID-19
Most people with COVID-19 experience mild illness and recover, but for some people symptoms are more severe, may require medical attention, and could result in death. For those with moderate or severe disease, the National COVID-19 Clinical Evidence Taskforce has developed living guidelines to support clinical care in Australia.
Caring for older people with COVID-19 at the end of life is further discussed in the free ELDAC webinar series for residential aged care and home care settings. Replays are available now.
Module 1: Recognise End of Life Learning Outcomes:
Watching this video will help you to:
Module 2: Assess Palliative Care Needs Learning Outcomes:
Watching this video will enable you to:
For updates on COVID-19, see the ELDAC webpage: Being prepared for COVID-19.
Understanding the dying process
Many older persons living in residential aged care facilities are frail and may also suffer from one or more long-lasting illnesses. As their illnesses progress they can affect the major organs of the body, including the brain, heart, lungs, liver and kidneys. During the last days of their life, staff and family members may notice that the resident’s condition gets worse quite quickly. The changes during the dying process will vary from resident to resident with some residents becoming unconscious a few days prior to dying while others may deteriorate relatively quickly, or may even remain awake to some extent right up until they die.
If a feeding tube is recommended to deal with difficulty swallowing (as often happens to someone with severe dementia), think long and hard before giving the green light. Although feeding tubes are common practice in late-stage dementia, they haven't been shown to improve functional or nutritional status -- or to prolong life.
Residents who are dying commonly experience distressing symptoms in the last days and hours of life.
High quality end of life (terminal) care requires ongoing assessment of the resident and timely use of pharmacological and non-pharmacological strategies to address emerging symptoms. Failure to do so can result in poor resident/family outcomes as well as poor health system outcomes if dying residents are inappropriately transferred to emergency departments/hospital wards.
New webpage: Law on capacity and consent to treatment
A new webpage on Capacity and consent to medical treatment* is now available on End of Life Law in Australia. The webpage explores the requirements for valid consent to medical treatment, and the law on when an adult will have capacity to make decisions about medical treatment. It also provides information about the law on these issues by State and Territory.
* Adults with decision-making capacity have the right to decide what can be done to their bodies. This means they can consent to medical treatment or refuse it. This page explores the law relating to consent to treatment, and when an adult will have capacity to make decisions about medical treatment. Information about the law in each State and Territory is discussed here.
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
The Legal Toolkit provides practical information about the law at end of life for the aged care sector. It contains useful resources on end of life legal issues commonly encountered in aged care to help you to know the law and to support your practice. To find out more, read our Legal factsheet (701kb pdf).
02 March 2020
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
Palliative care identifies and treats symptoms which may be physical, emotional, spiritual or social. Because palliative care is based on individual needs, the services offered will differ but may include:
Palliative care is a family-centred model of care, meaning that family and carers can receive practical and emotional support.
Palliative Care Services
Palliative care aims to improve quality of life for a person living with a life-limiting illness by supporting physical, emotional, spiritual and social needs.
Search for organisations that provide specialist palliative care services as well as state or territory palliative care organisations and community support agencies
https://palliativecare.org.au/directory-of-services
07 December 2019
Nurses and personal careworkers provide direct care to millions of older Australians. To support them in caring for older people approaching the end of life, palliAGED has developed a series of practical tip sheets focusing on commonly encountered issues.
https://www.palliaged.com.au/tabid/5544/Default.aspx
Older people will commonly have co-morbidities. Nurses and careworkers will increasingly provide care in the areas of palliative care, dementia, wound management and mental health (24.6MB pdf).
Providing end-of-life care for the elderly is a complex responsibility and task. Among other things, it requires the person providing it to understand and recognise the most common care issues expected when someone has a life-limiting illness or is approaching the end of life.
Planning and working as a team - as well as taking time to reflect, review and continuously improve practices - are also crucial. To be useful, resources need to be fit for purpose. They need to be trustworthy and based on evidence. They need to recognise that the knowledge, skills and scope of practice are different for careworkers and for nurses. And they need to be practical and helpful for busy staff.
The new palliAGED Practice Tip Sheets are the latest addition to our suite of evidence-based and free resources. Both sets of Nurse and Careworker Practice Tips Sheets aim to support and improve care for older Australians. The Practice Tips Sheets are also valuable for training and professional development in aged care. It can be used for independent learning, in house or team training, or as an additional resource for educators.
Download the palliAGED Practice Tip Sheets today.
15 March 2019
Who is palliative care for?
Palliative care is for everyone of any age who has been told that they have a serious illness that cannot be cured. Palliative care assists people with illnesses such as cancer, motor neurone disease and end-stage kidney or lung disease to manage symptoms and improve quality of life. For some people, palliative care may be beneficial from the time of diagnosis with a serious life-limiting illness. Palliative care can be given alongside treatments given by other doctors.
Guide to the Pharmacological Management of End of Life (Terminal) Symptoms in Residential Aged Care Residents:
A Resource for General Practitioners
Focuses on the pharmacological management of common end of life (terminal) symptoms experienced by dying residents. An evidence-based guide for GPs when leading and case managing the terminal care provided by multidisciplinary clinical teams in Australian residential aged care settings.
Residential Aged Care Palliative Approach Toolkit
A Handy Leaflet: 10 Questions to ask about Palliative Care in the Nursing Home
http://www.10questions.org.au/
Residential aged care staff responsible for managing/administering medications to control end of life (terminal) symptoms require:
• High level and up-to-date knowledge regarding end of life symptom management and the appropriate uses of palliative care medications.
• Immediate access to these medications in order to relieve symptoms as they occur.
• Locally specific policies and procedures, linked to the continuous quality improvement and risk management programs of their residential aged care facility, to allow safe and effective medication management.
. Your Advanced Health Directive is known by the staff.
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
End of Life Law in Australia provides accurate, practical and relevant information to assist you in navigating the challenging legal issues that can arise with end of life decision-making.
As Australia’s population rapidly ages, legal and ethical issues at the end of life are arising more frequently. Research shows the law in this area is complex and often confusing for patients, families and health professionals, and that barriers to accessible information exist. Our goal is to support the community to know, and better understand, the law at end of life, enhance patient and family participation in decision-making, and improve end of life experiences.
The End of Life Law in Australia website seeks to assist people at all stages of life whether they are dealing with an end of life situation personally, or educating themselves about the law in this area. It addresses some frequently asked questions such as:
Laws relating to death, dying and decision-making can be complicated, and vary between Australian States and Territories. To help you navigate these laws and this website, the legal overview summarises key concepts. Where possible, this website provides external links to relevant publications, forms, organisations and other resources in each Australian State and Territory
Find out more about the law at end of life
For more information about the law at the end of life, select a topic below:
This website is an initiative of the Australian Centre for Health Law Research. It is designed to be used by patients, families, health and legal practitioners, the media, policymakers and the broader community to access information about Australian laws relating to death, dying and decision-making at the end of life.
These laws are very complex, particularly in Australia where the law differs between States and Territories, and where areas of uncertainty about the law exist. This website provides you with a broad introduction to these laws. It can also help you stay up to date with Recent Developments in the end of life area.
26 May 2017
We, the families, are Deeply Grateful for this website. Something that most of us were not aware of. Many thanks.
----------------------
To assist residential aged care providers to implement a comprehensive and evidence-based approach to care for residents. Whereas palliative care may take place over a number months, end of life (terminal) care focuses on the final days or weeks of life.
Symptoms commonly experienced during the terminal phase of life include:
• Pain
• Breathlessness
• Anxiety
• Agitation and restlessness
• Hallucinations
• Dysphagia
• Nausea
• Vomiting
• Respiratory secretions
Also good reading to prepare YOU and your family for what lies ahead in those last days...
http://joscelin.weebly.com/do-not-delay-palliative-care.html
http://joscelin.weebly.com/understanding-terminal-illness.html
http://joscelin.weebly.com/the-stages-of-death.html - How to Respond to your loved one…
http://joscelin.weebly.com/saying-good-bye-in-those-last-days.html
http://joscelin.weebly.com/decision-assist.html
Pain Australia has great professional resources to help very Australian access the best possible treatment without delay, to reduce long-term disability, improve work retention rates, and help people and their families live better lives: www.painaustralia.org.au
Australian Pain Management Association works with health clinicians, researchers, government and the community to deliver evidence-based pain management services: www.painmanagement.org.au
NPS MedicineWISE has free and evidence-based information on medicines, health conditions and medical tests for both health professionals and consumers:
https://www.nps.org.au/search?q=Pain&scope=all&age=any&category=all&sort=most-relevant
Chronic Pain Australia can help you improve your knowledge and understanding about chronic pain across Australia www.chronicpainaustralia.org.au
20 August 2021
Lump sum deposits operate like an interest free loan to residential aged care providers, accruing no interest income for the resident during their time in care. When the resident departs care, the lump sum deposit begins to attract interest, providing a benefit to the resident or their estate* whilst the lump sum deposit is still held by the provider, and care services are no longer delivered.
https://agedcare.health.gov.au/sites/g/files/net1426/f/documents/07_2017/report_of_the_base_interest_rate_project.pdf
Their estate*
If the resident has passed away, up until 14 days after the approved provider is shown the probate of the will or letters of administration of the estate. If the approved provider does not refund the lump sum payment within the legislated timeframes for repayment, the approved provider must pay interest at the Maximum Permissible Interest Rate for the period commencing from the day after the date the lump sum payment should have been refunded, and ending on the day the lump sum payment is repaid.
Allowing providers to request probate or letters of administration before refunding the lump sum balance provides important legal protection to the provider from refunding the lump sum to a person that is not the legal representative of the estate. Providers are not required to wait for probate or letters of administration however, and they may choose to make the refund earlier if they prefer. Providers can face risks in refunding the lump sum balance prior to probate being provided, such as refunding the lump sum to the wrong beneficiary, or in circumstances where the Will of the deceased resident is contested or the resident has died intestate.
The requirement to pay interest on the lump sum deposit from the date following the resident’s departure ensures that the resident or their estate is compensated for the time that the lump sum deposit is held by the provider whilst care is no longer being provided.
Whilst providers are required to pay interest on the balance of the lump sum deposit held during this period, the provider is able to earn interest income on the amount owing during the whole time the deposit is held which can be used for service provision. The provider’s ability to earn interest needs to be balanced with the requirement for maintaining sufficient liquidity to enable the provider to repay lump sum accommodation balances as and when they fall due for repayment.
This will mean that residents can remain in familiar surroundings, cared for by staff and with other residents they know, rather than move to the unfamiliar surroundings of an emergency department or hospital ward.
End of life care:https://www.alzheimers.org.uk/get-support/help-dementia-care/end-life-care#content-start
This page explains what happens when someone in the later stages of dementia is nearing the end of life, and when they die.
- You are here: End of life care
- Dementia as a life-limiting illness
- Recognising when someone is reaching the end of their life
- End of life care and communication
- End of life care and physical needs
- Making decisions about end of life care
- Psychological, cultural, religious and spiritual needs
- Place of death
- Support for carers, family and close friends at end of life
- End of life care - other resources
Recognising end of life during COVID-19
Most people with COVID-19 experience mild illness and recover, but for some people symptoms are more severe, may require medical attention, and could result in death. For those with moderate or severe disease, the National COVID-19 Clinical Evidence Taskforce has developed living guidelines to support clinical care in Australia.
Caring for older people with COVID-19 at the end of life is further discussed in the free ELDAC webinar series for residential aged care and home care settings. Replays are available now.
Module 1: Recognise End of Life Learning Outcomes:
Watching this video will help you to:
- Define end of life
- Recognise the common signs of end of life
- Understand the use of end of life tools: SPICTTM and Surprise Question
Module 2: Assess Palliative Care Needs Learning Outcomes:
Watching this video will enable you to:
- Describe the importance of person-centred and holistic assessment
- Identify the four domains of wellbeing used in palliative care assessment
- Recognise the importance of care planning to support end of life care
For updates on COVID-19, see the ELDAC webpage: Being prepared for COVID-19.
Understanding the dying process
Many older persons living in residential aged care facilities are frail and may also suffer from one or more long-lasting illnesses. As their illnesses progress they can affect the major organs of the body, including the brain, heart, lungs, liver and kidneys. During the last days of their life, staff and family members may notice that the resident’s condition gets worse quite quickly. The changes during the dying process will vary from resident to resident with some residents becoming unconscious a few days prior to dying while others may deteriorate relatively quickly, or may even remain awake to some extent right up until they die.
If a feeding tube is recommended to deal with difficulty swallowing (as often happens to someone with severe dementia), think long and hard before giving the green light. Although feeding tubes are common practice in late-stage dementia, they haven't been shown to improve functional or nutritional status -- or to prolong life.
Residents who are dying commonly experience distressing symptoms in the last days and hours of life.
High quality end of life (terminal) care requires ongoing assessment of the resident and timely use of pharmacological and non-pharmacological strategies to address emerging symptoms. Failure to do so can result in poor resident/family outcomes as well as poor health system outcomes if dying residents are inappropriately transferred to emergency departments/hospital wards.
New webpage: Law on capacity and consent to treatment
A new webpage on Capacity and consent to medical treatment* is now available on End of Life Law in Australia. The webpage explores the requirements for valid consent to medical treatment, and the law on when an adult will have capacity to make decisions about medical treatment. It also provides information about the law on these issues by State and Territory.
* Adults with decision-making capacity have the right to decide what can be done to their bodies. This means they can consent to medical treatment or refuse it. This page explores the law relating to consent to treatment, and when an adult will have capacity to make decisions about medical treatment. Information about the law in each State and Territory is discussed here.
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
The Legal Toolkit provides practical information about the law at end of life for the aged care sector. It contains useful resources on end of life legal issues commonly encountered in aged care to help you to know the law and to support your practice. To find out more, read our Legal factsheet (701kb pdf).
02 March 2020
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
Palliative care identifies and treats symptoms which may be physical, emotional, spiritual or social. Because palliative care is based on individual needs, the services offered will differ but may include:
- Relief of pain and other symptoms e.g. vomiting, shortness of breath
- Resources such as equipment needed to aid care at home
- Assistance for families to come together to talk about sensitive issues
- Links to other services such as home help and financial support
- Support for people to meet cultural obligations
- Support for emotional, social and spiritual concerns
- Counselling and grief support
- Referrals to respite care services
Palliative care is a family-centred model of care, meaning that family and carers can receive practical and emotional support.
Palliative Care Services
Palliative care aims to improve quality of life for a person living with a life-limiting illness by supporting physical, emotional, spiritual and social needs.
Search for organisations that provide specialist palliative care services as well as state or territory palliative care organisations and community support agencies
https://palliativecare.org.au/directory-of-services
07 December 2019
Nurses and personal careworkers provide direct care to millions of older Australians. To support them in caring for older people approaching the end of life, palliAGED has developed a series of practical tip sheets focusing on commonly encountered issues.
https://www.palliaged.com.au/tabid/5544/Default.aspx
Older people will commonly have co-morbidities. Nurses and careworkers will increasingly provide care in the areas of palliative care, dementia, wound management and mental health (24.6MB pdf).
Providing end-of-life care for the elderly is a complex responsibility and task. Among other things, it requires the person providing it to understand and recognise the most common care issues expected when someone has a life-limiting illness or is approaching the end of life.
Planning and working as a team - as well as taking time to reflect, review and continuously improve practices - are also crucial. To be useful, resources need to be fit for purpose. They need to be trustworthy and based on evidence. They need to recognise that the knowledge, skills and scope of practice are different for careworkers and for nurses. And they need to be practical and helpful for busy staff.
The new palliAGED Practice Tip Sheets are the latest addition to our suite of evidence-based and free resources. Both sets of Nurse and Careworker Practice Tips Sheets aim to support and improve care for older Australians. The Practice Tips Sheets are also valuable for training and professional development in aged care. It can be used for independent learning, in house or team training, or as an additional resource for educators.
Download the palliAGED Practice Tip Sheets today.
15 March 2019
Who is palliative care for?
Palliative care is for everyone of any age who has been told that they have a serious illness that cannot be cured. Palliative care assists people with illnesses such as cancer, motor neurone disease and end-stage kidney or lung disease to manage symptoms and improve quality of life. For some people, palliative care may be beneficial from the time of diagnosis with a serious life-limiting illness. Palliative care can be given alongside treatments given by other doctors.
Guide to the Pharmacological Management of End of Life (Terminal) Symptoms in Residential Aged Care Residents:
A Resource for General Practitioners
Focuses on the pharmacological management of common end of life (terminal) symptoms experienced by dying residents. An evidence-based guide for GPs when leading and case managing the terminal care provided by multidisciplinary clinical teams in Australian residential aged care settings.
Residential Aged Care Palliative Approach Toolkit
A Handy Leaflet: 10 Questions to ask about Palliative Care in the Nursing Home
http://www.10questions.org.au/
Residential aged care staff responsible for managing/administering medications to control end of life (terminal) symptoms require:
• High level and up-to-date knowledge regarding end of life symptom management and the appropriate uses of palliative care medications.
• Immediate access to these medications in order to relieve symptoms as they occur.
• Locally specific policies and procedures, linked to the continuous quality improvement and risk management programs of their residential aged care facility, to allow safe and effective medication management.
. Your Advanced Health Directive is known by the staff.
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
End of Life Law in Australia provides accurate, practical and relevant information to assist you in navigating the challenging legal issues that can arise with end of life decision-making.
As Australia’s population rapidly ages, legal and ethical issues at the end of life are arising more frequently. Research shows the law in this area is complex and often confusing for patients, families and health professionals, and that barriers to accessible information exist. Our goal is to support the community to know, and better understand, the law at end of life, enhance patient and family participation in decision-making, and improve end of life experiences.
The End of Life Law in Australia website seeks to assist people at all stages of life whether they are dealing with an end of life situation personally, or educating themselves about the law in this area. It addresses some frequently asked questions such as:
- Who makes medical treatment decisions for a person who is too unwell to make decisions themselves?
- Does a doctor have to follow the instructions in an advance directive?
- Can a dying patient or their family refuse or demand medical treatment needed to keep the patient alive?
- Is euthanasia and assisted suicide legal in Australia?
- Can a child with a terminal illness make their own medical treatment decisions?
- What happens if family members disagree with a person’s decision to donate their organs when they die?
Laws relating to death, dying and decision-making can be complicated, and vary between Australian States and Territories. To help you navigate these laws and this website, the legal overview summarises key concepts. Where possible, this website provides external links to relevant publications, forms, organisations and other resources in each Australian State and Territory
Find out more about the law at end of life
For more information about the law at the end of life, select a topic below:
- About
- Recent Developments
- Legal Overview
- Advance Directives
- Stopping Treatment
- Palliative Care
- Organ Donation
- Euthanasia and Assisted Dying
- Research Projects
- Publications and Presentations
This website is an initiative of the Australian Centre for Health Law Research. It is designed to be used by patients, families, health and legal practitioners, the media, policymakers and the broader community to access information about Australian laws relating to death, dying and decision-making at the end of life.
These laws are very complex, particularly in Australia where the law differs between States and Territories, and where areas of uncertainty about the law exist. This website provides you with a broad introduction to these laws. It can also help you stay up to date with Recent Developments in the end of life area.
26 May 2017
We, the families, are Deeply Grateful for this website. Something that most of us were not aware of. Many thanks.
----------------------
To assist residential aged care providers to implement a comprehensive and evidence-based approach to care for residents. Whereas palliative care may take place over a number months, end of life (terminal) care focuses on the final days or weeks of life.
Symptoms commonly experienced during the terminal phase of life include:
• Pain
• Breathlessness
• Anxiety
• Agitation and restlessness
• Hallucinations
• Dysphagia
• Nausea
• Vomiting
• Respiratory secretions
Also good reading to prepare YOU and your family for what lies ahead in those last days...
http://joscelin.weebly.com/do-not-delay-palliative-care.html
http://joscelin.weebly.com/understanding-terminal-illness.html
http://joscelin.weebly.com/the-stages-of-death.html - How to Respond to your loved one…
http://joscelin.weebly.com/saying-good-bye-in-those-last-days.html
http://joscelin.weebly.com/decision-assist.html
Pain Australia has great professional resources to help very Australian access the best possible treatment without delay, to reduce long-term disability, improve work retention rates, and help people and their families live better lives: www.painaustralia.org.au
Australian Pain Management Association works with health clinicians, researchers, government and the community to deliver evidence-based pain management services: www.painmanagement.org.au
NPS MedicineWISE has free and evidence-based information on medicines, health conditions and medical tests for both health professionals and consumers:
https://www.nps.org.au/search?q=Pain&scope=all&age=any&category=all&sort=most-relevant
Chronic Pain Australia can help you improve your knowledge and understanding about chronic pain across Australia www.chronicpainaustralia.org.au
20 August 2021
- if a resident dies, the provider must refund the refundable deposit balance or accommodation bond balance within 14 days after being shown probate or letters of administration
Lump sum deposits operate like an interest free loan to residential aged care providers, accruing no interest income for the resident during their time in care. When the resident departs care, the lump sum deposit begins to attract interest, providing a benefit to the resident or their estate* whilst the lump sum deposit is still held by the provider, and care services are no longer delivered.
https://agedcare.health.gov.au/sites/g/files/net1426/f/documents/07_2017/report_of_the_base_interest_rate_project.pdf
Their estate*
If the resident has passed away, up until 14 days after the approved provider is shown the probate of the will or letters of administration of the estate. If the approved provider does not refund the lump sum payment within the legislated timeframes for repayment, the approved provider must pay interest at the Maximum Permissible Interest Rate for the period commencing from the day after the date the lump sum payment should have been refunded, and ending on the day the lump sum payment is repaid.
Allowing providers to request probate or letters of administration before refunding the lump sum balance provides important legal protection to the provider from refunding the lump sum to a person that is not the legal representative of the estate. Providers are not required to wait for probate or letters of administration however, and they may choose to make the refund earlier if they prefer. Providers can face risks in refunding the lump sum balance prior to probate being provided, such as refunding the lump sum to the wrong beneficiary, or in circumstances where the Will of the deceased resident is contested or the resident has died intestate.
The requirement to pay interest on the lump sum deposit from the date following the resident’s departure ensures that the resident or their estate is compensated for the time that the lump sum deposit is held by the provider whilst care is no longer being provided.
Whilst providers are required to pay interest on the balance of the lump sum deposit held during this period, the provider is able to earn interest income on the amount owing during the whole time the deposit is held which can be used for service provision. The provider’s ability to earn interest needs to be balanced with the requirement for maintaining sufficient liquidity to enable the provider to repay lump sum accommodation balances as and when they fall due for repayment.