Palliative care – care provided for a person of any age who has a life-limiting illness, with little or no prospect of cure, and for whom the primary treatment goal is quality of life.
PubMed Searches
The links on this page provide an easy and reliable way to find the relevant palliative care literature in English. Each link runs an immediate search of PubMed and all searches are automatically updated as new articles are added to the database. These searches use the Palliative Care Search Filter as their base.
What is palliative care? The principles that you need to know
By HelloCare Editorial Team
When a person is told they need palliative care, it can be an emotional and confronting thing for them and their loved ones. It is quite natural to feel afraid when hearing the words ‘palliative care’ for the first time, but with the right information and support the process can be made easier.
Palliative care essentially means that a person is at the end of their life, and a big focus is on keeping them comfortable so that they are able to live out their final time on this earth – with a focus on quality of life rather than counting the days.
The World Health Organisation defines palliative care as “the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems, is paramount.”
Palliative care: How does it impact someone's life?
Many people think that palliative care shortens the life of an individual with a terminal or life limiting illness.
The assumption that palliative care results in people dying may come from the fact that many older people start receiving the care when they are close to the end of their life. However, palliative care is actually all about maintaining quality of life. The care isn't trying to hasten or postpone death, but is focused on helping the individual live comfortably for the time they have left.
Ms Reed-Cox says, "Depending on a person’s care preferences, some potentially life-prolonging treatments may be refused in favour of an improved quality of life. "There can be a misconception when people believe palliative care is limited to pain relief in the final days of a person’s life. Palliative care aims to provide the best quality of life until the person dies." In most instances, having palliative care early on can provide a person with the ability to control their symptoms more effectively and build a strong therapeutic relationship with their health care team.
What do you want your palliative care experience to be?
What is palliative care for?
What is an Advance Care Directive?
Counselling
Do not delay discussion of and referral to palliative care for a patient with serious illness just because they are pursuing disease-directed treatment
Palliative care provides an added layer of support to patients with life-limiting disease and their families. Symptomatic patients can benefit regardless of their diagnosis, prognosis or disease treatment regimen. Studies show that integrating palliative care with disease-modifying therapies improves pain and symptom control, as well as patient quality of life and family satisfaction. Early access to palliative care has been shown to reduce aggressive therapies at the end of life, prolong life in certain patient populations, and significantly reduce hospital costs.
Palliative Services in Australia
The goal of palliative care is to improve the quality of life of patients with an active, progressive disease that has little or no prospect of a cure. With the growth and ageing of Australia's population, and an increase of chronic and generally incurable illnesses, the types of patient groups requiring palliative care has widened.
15 September 2020
April Toolkit Tip Patient assessment is critical in identifying when patients would benefit from palliative care. A palliative care needs assessment should be considered for any patient when you would not be surprised if they died within the next twelve months.
Our Primary Care Toolkit provides evidence-based resources for clinicians working in primary care to support the assessment of palliative care patient needs.
Patient assessment is critical in identifying when patients would benefit from palliative care. A palliative care needs assessment should be considered for any patient when you would not be surprised if they died within the next twelve months.
Our Primary Care Toolkit provides evidence-based resources for clinicians working in primary care to support the assessment of palliative care patient needs.
CareSearch Blog: Palliative Perspectives
The views and opinions expressed in our blog series are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health.
https://www.caresearch.com.au/caresearch/TabId/3781/ArtMID/6000/ArticleID/1592/Using-digital-innovations-in-aged-care.aspx
Using digital innovations in aged care A blog post by Professor Jennifer Tieman, Flinders University and Digital Innovations Lead, ELDAC
The ‘surprise’ question - Identification of patient approaching the end-of-life https://www.caresearch.com.au/caresearch/tabid/1507/Default.aspx#sur
The 'surprise question': For patients with advanced disease of progressive life-limiting conditions -
"Would you be surprised if the patient were to die in the next few months, weeks, days?"
The answer to this question should be an intuitive one, pulling together a range of clinical, co-morbidity, social and other factors that give a whole picture of deterioration. If you would not be surprised, then what measures might be taken to improve the patient’s quality of life now and in preparation for possible further decline?
From: Gold Standards Framework, NHS
Ref: Thomas K. Prognostic Indicator Guidance (PIG). 4th ed. The Gold Standards Framework Centre in End of Life Care. 2011 Oct [cited 2014 Sep 29]. (642kb pdf)
PEPSI COLA - Holistic patient assessment tool
The aide memoire is a tool to support practitioners carrying out assessments and can be used with assessment tools currently in use. It promotes communication and support and provides a framework to consider patients’ holistic needs.The aide memoire encompasses all the domains of a holistic assessment through the acronym PEPSI COLA: P - Physical
E - Emotional
P - Personal
S - Social support
I - Information and communication
C - Control and autonomy
O - Out of Hours
L - Living with your illness
A - Aftercare
In each domain the tool identifies:
Ref: Thomas K. Holistic Patient Assessment - Pepsi Cola Aide Memoire. The Gold Standards Framework Centre in End of Life Care. 2009. (128kb pdf)
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
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.
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
Conducting a palliative care needs assessment
Learn to recognise and manage common palliative care symptoms by focusing on a resident’s physical, psychological, cultural, social and spiritual needs. All residents identified as at the end of life should have a comprehensive palliative care needs assessment. Guidance is available in the Residential Aged Care toolkit. Hear expert clinicians discuss how to complete a comprehensive palliative care needs assessment in the Residential Aged Care Toolkit Educational Video on Assess Palliative Care Needs (Module 2).
There are many resources in the Home Care toolkit to help with assessing the palliative care needs of your clients, including the importance of a person-centred and holistic assessment and identifying the four domains of wellbeing.
The Home Care Toolkit Educational Video on Assess Palliative Care Needs (Module 2) has expert clinicians discussing how to complete a comprehensive palliative care assessment.
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.
Symptom Assessment Scale
This form is about the symptoms that bother, worry or distress you.
Functional Assessment in Palliative Care (RUG-ADL & AKPS)
The Resource Utilisation Groups – Activities of Daily Living (RUG-ADL) is a 4-item scale measuring motor function with activities of daily living: bed mobility, toileting, transfer and eating. The assessment is based on what the person does, not what they are capable of doing. It informs us about the patient’s functional status, the assistance they require to carry out these activities and the resources needed for the patient’s care.
The Australia-modified Karnofsky Performance Status (AKPS) Scale is a measure of the patient’s performance across the dimensions of activity, work and self-care at phase start. It is a single score between 10 and 100 assigned by a clinician based on observations of a patient’s ability to perform common tasks relating to activity, work and self-care.
Have a read through the Clinical Manual
https://ahsri.uow.edu.au/content/groups/public/@web/@chsd/@pcoc/documents/doc/uow129133.pdf
This manual is designed for palliative care clinicians to understand and utilise the PCOC assessment tools and data items as part of routine clinical practice. The manual includes:
Assessment tool definitions
Data item definitions
Forms
Information on the benchmarks and outcome measures. Additional educational resources found at www.pcoc.org.au.
Frequency of Assessment PCOC provides clinicians with tools to systematically assess individual patient experiences using validated clinical assessment tools. It is helpful to view assessments as palliative care observations or vital signs. Assessments can be conducted in-person or via the telephone. The frequency of assessment is outlined in the figure. Assessments are conducted daily or at contact to detect changes in patient and family/carer needs.
= = = = = = = = = = = = = = = = = = = = = = = = = =
Gold Coast Health Service (Palliative Care)
Phone: 07 5668 6000 Robina Hospital, 2 Bayberry Lane, Robina QLD 4226
Service Provider Category
Specialist Palliative Care Provider
Service Level
Service Level 3
Type of Service(s) offered
10 Questions to ask about Palliative Care in the Nursing Home:
http://www.10questions.org.au/PDF/10%20Questions%20to%20ask-palliative%20care%20FINAL%20nc.pdf
For more information www.tg.org.au or freecall 1800 061 260 (within Australia), Some of the new information and major changes included in Therapeutic Guidelines: Palliative Care, version 4. https://www.tg.org.au/wp-content/uploads/TG_palliative-care4_whats_new.pdf
The management of patients in the terminal phase has been extensively revised and expanded to include new information on preparing for the last days of life and anticipatory prescribing. New detail is included on the management of common symptoms in the last days of life, and how to explain this phase of care to a patient and their family.
and to help you recognise the dying process, and what can be done to ease - http://apps.caresearch.com.au/palliAGEDnurse/Recognising-Dying
Do not delay conversations around prognosis, wishes, values and end of life planning (including advance care planning) in patients with advanced disease
Advanced care planning is a process, which includes choosing a surrogate or alternate decision-maker and communicating values or wishes for medical care. Evidence shows that advance care planning conversations improve patient and family satisfaction with care and concordance between patients’ and families’ wishes, reduce the likelihood of patients receiving hospital care and the number of days spent in hospital, and increase the likelihood of receiving hospice care.
The law and end of life care:
Did you know that it is lawful for a person with decision-making capacity to stop treatment that might prolong their life, even if their doctor recommends it continue? This is discussed in the withholding and withdrawing life-sustaining medical treatment section of the Legal toolkit.
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.
Do not use oxygen therapy to treat non-hypoxic dyspnoea in the absence of anxiety or routinely use oxygen therapy at the end of life
Oxygen is frequently used to relieve shortness of breath in patients with advanced illness. However, supplemental oxygen does not benefit patients who are breathless but not hypoxic. Supplemental flow of air is equally as effective as oxygen under these circumstances. The use of a fan for facial air streaming can also be effective.
Do not use percutaneous feeding tubes in patients with advanced dementia; instead use oral assisted feeding
Strong evidence exists that artificial nutrition does not prolong life or improve quality of life in patients with advanced dementia. Substantial functional decline and recurrent or progressive medical illnesses may indicate that a patient who is not eating is unlikely to obtain any significant or long-term benefit from artificial nutrition. Feeding tubes are often placed after hospitalization, frequently with concerns for aspirations, and for those who are not eating.
Contrary to what many people think, tube feeding does not ensure the patient’s comfort or reduce suffering; it may cause fluid overload, diarrhoea, abdominal pain, local complications, less human interaction and may increase the risk of aspiration. Assistance with oral feeding is an evidence-based approach to provide nutrition for patients with advanced dementia and feeding problems.
To avoid adverse medication interactions and adverse drug events in cases of polypharmacy, do not prescribe medication without conducting a drug regime review
Older patients disproportionately use more prescription and non-prescription drugs than other populations. Evidence shows that such polypharmacy increases the risk of adverse drug reactions and hospital admissions. Medication review with follow up is therefore recommended for optimising prescribed medication and improving quality of life in older adults with polypharmacy.
To download as a .pdf
with sincere thanks to Choosing Wisely Australia - an initiative of NPS MedicineWise for having this important conversation about unnecessary tests, treatments and procedures. Carers and their loved one do their best in sometimes Very Difficult circumstances. They Need to have complete and absolute faith in their GP as their guide to controlling their symptoms and lessening their pain and uneasiness about whatever is to happen. A visit to the GP is scary; a visit to a hospital is completely fraught with difficulties, both emotionally and physically... This information has long been needed. Thank you.
01 March 2016
---------------------------------- Hospice care is for people who can no longer benefit from regular medical treatment and are likely in their final months of life. Instead of continuing to try curing or delaying the fatal disease or condition, hospice ends curative treatment altogether. Instead, its goal is to control pain and other symptoms and make the patient's last stretch of life as comfortable as possible. Hospice can result in a significant improvement in the patient's quality of life, with a focus on her as a person rather than on her disease.
Hospice care can be received at home; someone can also receive this end-of-life care in a hospital, nursing home, or private hospice facility. Which is best depends on a patient's physical condition, whether the home is suited to providing hospice care, and the resources available in your community.
Hospice care isn't necessarily continuous, and a patient may switch into and out of it as a medical condition improves or deteriorates. For example, if a patient is in hospice care and goes into remission -- a period of relief from the symptoms of an illness -- the hospice care can be stopped, only to be resumed again if the symptoms reoccur or the condition gets worse.
Hopewell Hospice Services Inc.
88 Allied Drive, Arundel Qld 4214 PO Box 1290, Runaway Bay Qld 4216
Tel (07) 5563 2930 Fax (07) 5563 3139 email: [email protected]
www.hopewell.org.au
Palliative Care and Holistic Symptom Management:
For those living with an advanced; progressive illness where active curative treatment is no longer possible and who are not able to stay in or return to their previous home. Family and friends are welcomed and there are no fixed visiting hours.
Referral: Hopewell’s nurse-led model of care means that referrals can be made directly to the Hospice – by you, the family, a GP or other health professional. A nurse can then visit you prior to admission.
The Hopewell Outreach Service provides social and emotional support, and some respite care, for people who are providing palliative care for a loved one at home. Respite is limited as to when we have a vacancy. Preferred minimum 5 days. Respite care is often available over the two weeks of Christmas.
----------------------------------------
Resources
For more information about helping someone close to you living with a life limiting illness, click on the links below. These pages are also available to download.
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
PubMed Searches
The links on this page provide an easy and reliable way to find the relevant palliative care literature in English. Each link runs an immediate search of PubMed and all searches are automatically updated as new articles are added to the database. These searches use the Palliative Care Search Filter as their base.
What is palliative care? The principles that you need to know
By HelloCare Editorial Team
When a person is told they need palliative care, it can be an emotional and confronting thing for them and their loved ones. It is quite natural to feel afraid when hearing the words ‘palliative care’ for the first time, but with the right information and support the process can be made easier.
Palliative care essentially means that a person is at the end of their life, and a big focus is on keeping them comfortable so that they are able to live out their final time on this earth – with a focus on quality of life rather than counting the days.
The World Health Organisation defines palliative care as “the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems, is paramount.”
Palliative care: How does it impact someone's life?
Many people think that palliative care shortens the life of an individual with a terminal or life limiting illness.
The assumption that palliative care results in people dying may come from the fact that many older people start receiving the care when they are close to the end of their life. However, palliative care is actually all about maintaining quality of life. The care isn't trying to hasten or postpone death, but is focused on helping the individual live comfortably for the time they have left.
Ms Reed-Cox says, "Depending on a person’s care preferences, some potentially life-prolonging treatments may be refused in favour of an improved quality of life. "There can be a misconception when people believe palliative care is limited to pain relief in the final days of a person’s life. Palliative care aims to provide the best quality of life until the person dies." In most instances, having palliative care early on can provide a person with the ability to control their symptoms more effectively and build a strong therapeutic relationship with their health care team.
What do you want your palliative care experience to be?
What is palliative care for?
What is an Advance Care Directive?
Counselling
Do not delay discussion of and referral to palliative care for a patient with serious illness just because they are pursuing disease-directed treatment
Palliative care provides an added layer of support to patients with life-limiting disease and their families. Symptomatic patients can benefit regardless of their diagnosis, prognosis or disease treatment regimen. Studies show that integrating palliative care with disease-modifying therapies improves pain and symptom control, as well as patient quality of life and family satisfaction. Early access to palliative care has been shown to reduce aggressive therapies at the end of life, prolong life in certain patient populations, and significantly reduce hospital costs.
Palliative Services in Australia
The goal of palliative care is to improve the quality of life of patients with an active, progressive disease that has little or no prospect of a cure. With the growth and ageing of Australia's population, and an increase of chronic and generally incurable illnesses, the types of patient groups requiring palliative care has widened.
15 September 2020
April Toolkit Tip Patient assessment is critical in identifying when patients would benefit from palliative care. A palliative care needs assessment should be considered for any patient when you would not be surprised if they died within the next twelve months.
Our Primary Care Toolkit provides evidence-based resources for clinicians working in primary care to support the assessment of palliative care patient needs.
Patient assessment is critical in identifying when patients would benefit from palliative care. A palliative care needs assessment should be considered for any patient when you would not be surprised if they died within the next twelve months.
Our Primary Care Toolkit provides evidence-based resources for clinicians working in primary care to support the assessment of palliative care patient needs.
CareSearch Blog: Palliative Perspectives
The views and opinions expressed in our blog series are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health.
https://www.caresearch.com.au/caresearch/TabId/3781/ArtMID/6000/ArticleID/1592/Using-digital-innovations-in-aged-care.aspx
Using digital innovations in aged care A blog post by Professor Jennifer Tieman, Flinders University and Digital Innovations Lead, ELDAC
The ‘surprise’ question - Identification of patient approaching the end-of-life https://www.caresearch.com.au/caresearch/tabid/1507/Default.aspx#sur
The 'surprise question': For patients with advanced disease of progressive life-limiting conditions -
"Would you be surprised if the patient were to die in the next few months, weeks, days?"
The answer to this question should be an intuitive one, pulling together a range of clinical, co-morbidity, social and other factors that give a whole picture of deterioration. If you would not be surprised, then what measures might be taken to improve the patient’s quality of life now and in preparation for possible further decline?
From: Gold Standards Framework, NHS
Ref: Thomas K. Prognostic Indicator Guidance (PIG). 4th ed. The Gold Standards Framework Centre in End of Life Care. 2011 Oct [cited 2014 Sep 29]. (642kb pdf)
PEPSI COLA - Holistic patient assessment tool
The aide memoire is a tool to support practitioners carrying out assessments and can be used with assessment tools currently in use. It promotes communication and support and provides a framework to consider patients’ holistic needs.The aide memoire encompasses all the domains of a holistic assessment through the acronym PEPSI COLA: P - Physical
E - Emotional
P - Personal
S - Social support
I - Information and communication
C - Control and autonomy
O - Out of Hours
L - Living with your illness
A - Aftercare
In each domain the tool identifies:
- Potential anticipated patient issues and concerns
- Cue questions to ask patients and carers
- And resources for professionals to signpost to. Key principles of carrying out a holistic assessment are that:
- The assessment should be patient ‘concerns-led’
- Helping patients to assess their own needs should be central to the process
- Patient consent is necessary to the assessment process
- Professionals undertaking assessment should have reached an agreed level of competency in key aspects of assessment
- Patient preferences for communicating with particular professionals, their family and friends, should be taken into account
Ref: Thomas K. Holistic Patient Assessment - Pepsi Cola Aide Memoire. The Gold Standards Framework Centre in End of Life Care. 2009. (128kb pdf)
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
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.
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
Conducting a palliative care needs assessment
Learn to recognise and manage common palliative care symptoms by focusing on a resident’s physical, psychological, cultural, social and spiritual needs. All residents identified as at the end of life should have a comprehensive palliative care needs assessment. Guidance is available in the Residential Aged Care toolkit. Hear expert clinicians discuss how to complete a comprehensive palliative care needs assessment in the Residential Aged Care Toolkit Educational Video on Assess Palliative Care Needs (Module 2).
There are many resources in the Home Care toolkit to help with assessing the palliative care needs of your clients, including the importance of a person-centred and holistic assessment and identifying the four domains of wellbeing.
The Home Care Toolkit Educational Video on Assess Palliative Care Needs (Module 2) has expert clinicians discussing how to complete a comprehensive palliative care assessment.
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.
Symptom Assessment Scale
This form is about the symptoms that bother, worry or distress you.
Functional Assessment in Palliative Care (RUG-ADL & AKPS)
The Resource Utilisation Groups – Activities of Daily Living (RUG-ADL) is a 4-item scale measuring motor function with activities of daily living: bed mobility, toileting, transfer and eating. The assessment is based on what the person does, not what they are capable of doing. It informs us about the patient’s functional status, the assistance they require to carry out these activities and the resources needed for the patient’s care.
The Australia-modified Karnofsky Performance Status (AKPS) Scale is a measure of the patient’s performance across the dimensions of activity, work and self-care at phase start. It is a single score between 10 and 100 assigned by a clinician based on observations of a patient’s ability to perform common tasks relating to activity, work and self-care.
Have a read through the Clinical Manual
https://ahsri.uow.edu.au/content/groups/public/@web/@chsd/@pcoc/documents/doc/uow129133.pdf
This manual is designed for palliative care clinicians to understand and utilise the PCOC assessment tools and data items as part of routine clinical practice. The manual includes:
Assessment tool definitions
Data item definitions
Forms
Information on the benchmarks and outcome measures. Additional educational resources found at www.pcoc.org.au.
Frequency of Assessment PCOC provides clinicians with tools to systematically assess individual patient experiences using validated clinical assessment tools. It is helpful to view assessments as palliative care observations or vital signs. Assessments can be conducted in-person or via the telephone. The frequency of assessment is outlined in the figure. Assessments are conducted daily or at contact to detect changes in patient and family/carer needs.
= = = = = = = = = = = = = = = = = = = = = = = = = =
Gold Coast Health Service (Palliative Care)
Phone: 07 5668 6000 Robina Hospital, 2 Bayberry Lane, Robina QLD 4226
Service Provider Category
Specialist Palliative Care Provider
Service Level
Service Level 3
Type of Service(s) offered
- Community support to patients in the home,
- Consultative service provided to the hospital,
- Equipment hire,
- Inpatient palliative care beds,
- Outpatient unit,
- Provide education and training,
- Social worker
10 Questions to ask about Palliative Care in the Nursing Home:
http://www.10questions.org.au/PDF/10%20Questions%20to%20ask-palliative%20care%20FINAL%20nc.pdf
For more information www.tg.org.au or freecall 1800 061 260 (within Australia), Some of the new information and major changes included in Therapeutic Guidelines: Palliative Care, version 4. https://www.tg.org.au/wp-content/uploads/TG_palliative-care4_whats_new.pdf
The management of patients in the terminal phase has been extensively revised and expanded to include new information on preparing for the last days of life and anticipatory prescribing. New detail is included on the management of common symptoms in the last days of life, and how to explain this phase of care to a patient and their family.
and to help you recognise the dying process, and what can be done to ease - http://apps.caresearch.com.au/palliAGEDnurse/Recognising-Dying
Do not delay conversations around prognosis, wishes, values and end of life planning (including advance care planning) in patients with advanced disease
Advanced care planning is a process, which includes choosing a surrogate or alternate decision-maker and communicating values or wishes for medical care. Evidence shows that advance care planning conversations improve patient and family satisfaction with care and concordance between patients’ and families’ wishes, reduce the likelihood of patients receiving hospital care and the number of days spent in hospital, and increase the likelihood of receiving hospice care.
The law and end of life care:
- How do you know if a person has decision-making capacity and can consent to care and treatment?
- Can treatment be given if a person doesn’t have capacity?
- What if they have dementia and their capacity fluctuates?
- Find the answers and more about capacity and consent to medical treatment in the Legal toolkit.
Did you know that it is lawful for a person with decision-making capacity to stop treatment that might prolong their life, even if their doctor recommends it continue? This is discussed in the withholding and withdrawing life-sustaining medical treatment section of the Legal toolkit.
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.
Do not use oxygen therapy to treat non-hypoxic dyspnoea in the absence of anxiety or routinely use oxygen therapy at the end of life
Oxygen is frequently used to relieve shortness of breath in patients with advanced illness. However, supplemental oxygen does not benefit patients who are breathless but not hypoxic. Supplemental flow of air is equally as effective as oxygen under these circumstances. The use of a fan for facial air streaming can also be effective.
Do not use percutaneous feeding tubes in patients with advanced dementia; instead use oral assisted feeding
Strong evidence exists that artificial nutrition does not prolong life or improve quality of life in patients with advanced dementia. Substantial functional decline and recurrent or progressive medical illnesses may indicate that a patient who is not eating is unlikely to obtain any significant or long-term benefit from artificial nutrition. Feeding tubes are often placed after hospitalization, frequently with concerns for aspirations, and for those who are not eating.
Contrary to what many people think, tube feeding does not ensure the patient’s comfort or reduce suffering; it may cause fluid overload, diarrhoea, abdominal pain, local complications, less human interaction and may increase the risk of aspiration. Assistance with oral feeding is an evidence-based approach to provide nutrition for patients with advanced dementia and feeding problems.
To avoid adverse medication interactions and adverse drug events in cases of polypharmacy, do not prescribe medication without conducting a drug regime review
Older patients disproportionately use more prescription and non-prescription drugs than other populations. Evidence shows that such polypharmacy increases the risk of adverse drug reactions and hospital admissions. Medication review with follow up is therefore recommended for optimising prescribed medication and improving quality of life in older adults with polypharmacy.
To download as a .pdf
with sincere thanks to Choosing Wisely Australia - an initiative of NPS MedicineWise for having this important conversation about unnecessary tests, treatments and procedures. Carers and their loved one do their best in sometimes Very Difficult circumstances. They Need to have complete and absolute faith in their GP as their guide to controlling their symptoms and lessening their pain and uneasiness about whatever is to happen. A visit to the GP is scary; a visit to a hospital is completely fraught with difficulties, both emotionally and physically... This information has long been needed. Thank you.
01 March 2016
---------------------------------- Hospice care is for people who can no longer benefit from regular medical treatment and are likely in their final months of life. Instead of continuing to try curing or delaying the fatal disease or condition, hospice ends curative treatment altogether. Instead, its goal is to control pain and other symptoms and make the patient's last stretch of life as comfortable as possible. Hospice can result in a significant improvement in the patient's quality of life, with a focus on her as a person rather than on her disease.
Hospice care can be received at home; someone can also receive this end-of-life care in a hospital, nursing home, or private hospice facility. Which is best depends on a patient's physical condition, whether the home is suited to providing hospice care, and the resources available in your community.
Hospice care isn't necessarily continuous, and a patient may switch into and out of it as a medical condition improves or deteriorates. For example, if a patient is in hospice care and goes into remission -- a period of relief from the symptoms of an illness -- the hospice care can be stopped, only to be resumed again if the symptoms reoccur or the condition gets worse.
Hopewell Hospice Services Inc.
88 Allied Drive, Arundel Qld 4214 PO Box 1290, Runaway Bay Qld 4216
Tel (07) 5563 2930 Fax (07) 5563 3139 email: [email protected]
www.hopewell.org.au
Palliative Care and Holistic Symptom Management:
For those living with an advanced; progressive illness where active curative treatment is no longer possible and who are not able to stay in or return to their previous home. Family and friends are welcomed and there are no fixed visiting hours.
Referral: Hopewell’s nurse-led model of care means that referrals can be made directly to the Hospice – by you, the family, a GP or other health professional. A nurse can then visit you prior to admission.
- Eight private rooms, six of which have shred en suite bathrooms. All rooms have garden outlooks, beds with electric controls, recliner chairs, TV sets, phone and wireless internet connection.
- Residents and families are encouraged to decorate individual rooms with some personal items to make them as much like being at home as possible.
The Hopewell Outreach Service provides social and emotional support, and some respite care, for people who are providing palliative care for a loved one at home. Respite is limited as to when we have a vacancy. Preferred minimum 5 days. Respite care is often available over the two weeks of Christmas.
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Resources
For more information about helping someone close to you living with a life limiting illness, click on the links below. These pages are also available to download.
- Asking questions can help
- Diabetes and palliative care – information for carers
- Directory of Services
- Dying to Talk Discussion Starter
- Facts about morphine and other opioid medicines in palliative care
- How can I support my friend/family member?
- Learn more about pain and pain management
- Questions for carers to ask
- The dying process
- Understanding grief
- What is palliative care?
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