Palliative Care and Medicines
"When I asked how he emotionally coped during the thousands of times he held those who were dying in his arms, he replied that you smile and be strong for them, because sometimes that’s all you can do.
Physicians are not here to prevent death! We are here to help patients live the highest quality of life and, when that is no longer possible, to facilitate the highest quality of death."
Special thanks to Dr. Patch Adams for this insight into what is Really Important in our lives.
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
How to access palliative care?
Last Updated at May 28th 2021
For older Australians near the end of their life, palliative care can be vital for optimising the quality of life they have before they pass, improving in both a physical, emotional, spiritual or social way.
You can ask your doctor to assist in organising palliative care for yourself if you want to receive the service. [Source: Shutterstock] However, palliative care is available early on into the diagnosis of an older person with an incurable illness.
Palliative care is personalised towards the care needs of an individual and is usually recommended for older people experiencing physical symptoms, like pain, vomiting and breathlessness, or emotional symptoms, like anxiety or loneliness.
Aiming to improve quality of life, palliative care is offered as a way in which that can be done when living with a life-limiting diagnosis.
NSW budget to fund 5,000 more end of life packages
An additional 5,000 End of Life Home Support packages will become available from next July as part of a $56 million palliative care package to be delivered in the NSW budget.
HammondCare CEO Mike Baird - The state budget will be handed down on November 17.
The home packages offer case management, personal care and domestic supports, as well as assistance with meals and transport.
Chief Executive of Palliative Care NSW Linda Hansen said the funding refleced a multi-disciplinary approach to palliative care.
“This funding recognises the vital role of allied health professionals in supporting the physical and mental health needs of patients at this difficult time,” Ms Hansen said.
“Extending the program of in-home support will mean that more people will be able to achieve their goal of being cared for at home.”
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Palliative Care will affect ALL of us at some stage in our lives, whether as a patient, carer, family member, neighbour or friend. Trustworthy information helps us to understand, plan and care...
https://www.caresearch.com.au/caresearch/tabid/64/Default.aspx
The Dying Process
Information and support to help carers to understand, anticipate and respond to some of the signs they may notice when their loved one is imminently dying
The dying process If you have never seen anyone die you may be afraid of what will happen, but the moment of death is usually peaceful. This brochure will help you to understand, anticipate and respond to some of the signs you may notice. Caring for a person during the last few weeks and days of life can be stressful and demanding. Many different feelings and emotions may surface at this time. Carers are often concerned that death will be a painful experience for the person. However, the time before death is generally peaceful. There is a gentle winding down that may take several days. The body starts to ‘let go’ of life. If restlessness does occur, it can be treated.
https://palliativecare.org.au/wp-content/uploads/2015/05/PCA002_The-Dying-Process_FA.pdf
Asking Questions Can Help - For Friends or Carers of People Approaching the Last Days of Life:
Guides friends or carers of people approaching the last days of life with questions to ask
http://www.cec.health.nsw.gov.au/__data/assets/pdf_file/0010/359290/1.-English-Asking-Questions-can-help-for-familyfriends.PDF
Module 2: Assess Palliative Care Needs - Learning Outcomes: Watching this video will enable you to:
You can ask your doctor to assist in organising palliative care for yourself if you want to receive the service. [Source: Shutterstock]However, palliative care is available early on into the diagnosis of an older person with an incurable illness.
Palliative care is personalised towards the care needs of an individual and is usually recommended for older people experiencing physical symptoms, like pain, vomiting and breathlessness, or emotional symptoms, like anxiety or loneliness.
Aiming to improve quality of life, palliative care is offered as a way in which that can be done when living with a life-limiting diagnosis.
The Manage Dying Home Care Toolkit Educational Video (Module 4) identifies the signs and symptoms of dying and how to support a client dying at home.
Being a Family Carer - What's it all about?
The focus of palliative care is on the quality of life that is to be lived;
- making sure the person is as comfortable as possible,
- free from all avoidable pain and suffering.
- When the disease has finally run its course, death occurs naturally, ideally without unwanted or burdensome interventions.
- No matter how long or short the illness, palliative care offers support to the patient and the carers, preferably early in the disease process.
Who are the palliative care specialists?
Palliative care teams include health professionals who are qualified and experienced in caring for people with life-threatening disease. Australia has regional palliative care services, each one differing slightly from the others in the services they provide. Some include specially trained palliative care doctors, nurses, social workers, psychologists, physiotherapists, other therapists (such as speech/music/reminiscence), pastoral care workers, dieticians, bereavement counsellors, volunteers and coordinators of volunteers.
Who are palliative care volunteers?
Palliative care volunteers provide their service free of charge. They offer support to carers so the patient can remain at home for as long as possible. Volunteer services vary but can include being able to stay with your relative while you go out; taking your relative for a drive or to an appointment; they can mind children, write down someone’s life story, play music, answer the phone, provide simple beauty treatments or gentle massage, and offer companionship.
If you would like a volunteer to assist you, please ask the palliative care service. Please be mindful however that the volunteer availability does vary.
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Supporting a Person Who Needs Palliative Care A Guide For Family And Friends
This guidebook provides a comprehensive and practical resource for family carers of people diagnosed with a life threatening illness who require palliative care. It provides strategies to support them in what can be a very difficult but often rewarding experience. Providing the best support to a person who needs palliative care can be made easier by getting appropriate information and finding the relevant resources. This means knowing what questions to ask, when and who to ask, and importantly how to look after oneself. This guidebook has been written by experts, informed by the latest research. Most notably, it includes information from past family carers, who have been in a similar situation. We can learn from them, and the book contains valuable insights from their firsthand knowledge.
Family Carers (sometimes called ‘Carers’) are friends or relatives who provide care or support for the older person:
The booklet is a simplified summary of a much more detailed and technical document called Guidelines for a Palliative Approach for Aged Care in the Community Setting (referred to in this booklet as the ‘Community Care Guidelines’), which has been published by the Australian Government Department of Health and Ageing, Canberra.
This plain-English summary provides older people and their family carers with helpful information about good care practices for older people living in the community. Most of the information in this booklet is based on ‘good practice points’ agreed by the experts who developed the Community Care Guidelines described above.
Where the information is based on evidence from scientific studies, this is indicated as follows:
What the research shows Other types of information presented throughout this booklet are:
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.
For updates on COVID-19, see the ELDAC webpage: Being prepared for COVID-19.
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The place of spiritual care at the end of life:
- a sense of Connectiveness... a feeling of Forgiveness and Grace...
The Palliative Care Bridge is a state-wide, palliative care education program coordinated and delivered by the HammondCare consortium, comprising HammondCare, Sacred Heart Health Service and Calvary Healthcare Sydney.
In 2013, the HammondCare consortium received three years of funding from the NSW Ministry of Health to deliver a palliative care home support program to seven NSW LHDs and a state-wide palliative care education program. The education program is based around the Bridge, a website for the delivery of innovative educational videos by respected experts and specialists in their fields and other relevant resources. Our aim is to better equip users of the site to gain confidence and specialised knowledge in the delivery of appropriate palliative care to people in need.
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Ensuring quality of life for end of life patients
"It came home to me recently whilst visiting a patient at home (who was not expected to make it out of hospital) how much difference being in your own home makes. People have more autonomy, they tend to sleep better, they can eat foods of their choice and can interact better with those around them. At any level of capacity, it is empowering to the patient.
Necessarily there are a variety of supports that need to be in place. These are both for the individual and also for their carers. The GP is an important part of the team. For some GPs this can seem daunting and beyond their remit. This is not the case.
The family GP is best placed to do the medical management and to call in and draw on specialist support where needed. In some respects this type of care is not the “high tech heroics” that one might see on TV but the steady hand of knowledge that comes from knowing the person and the family.
Of course there are a myriad of other services to consider including cleaning, gardening, delivery and preparation of meals and respite care. Planning ahead is also part of the process. This is another role where the GP can be of enormous value."
The role of community pharmacists in palliative care
Pharmacists play an important role in the delivery of care for people receiving aged-care services.
The End of Life Directions for Aged Care (ELDAC) team are conducting a study looking at the role of community pharmacists providing palliative care for older Australians living in residential dwellings and community-based aged-care facilities. If you are currently working as a pharmacist in a community setting, please click on this link which has more information in the Participant Information Sheet.
Do read more articles on the behaviours and care of those who have dementia.
https://thinkgp.com.au/blog/ensuring-quality-life-end-life-patients
https://healthtalk.org/caring-someone-terminal-illness/overview
Ways of coping and finding solace
Caring for a friend or relative with a terminal illness can be physically and emotionally draining. Listen to how some Carers found coping strategies.
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.
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.
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
https://www.kevinmd.com/blog/2019/09/the-broader-mission-for-hospice-care.html
Elisabeth Kubler-Ross, MD proposed that there were five emotional phases to coping with fatal disease.
No one goes through these stages in the same way or in the same order, and not everyone goes through each stage at all. Emotions mix and match, and members of a family are rarely at the same place in the grieving process. Often patients do not get beyond the first two stages, and many die astonished and angry. Relatively few patients fully accept what is happening. Rarer still are patients such as Ester who move directly to acceptance, avoiding the anguish of the other stages. Why not?
Every person more than seven years old knows that life is terminal. Nonetheless, most people do not emotionally prepare for what is going to happen. Instead, it is argued, we do the opposite, creating illusions of immortality that make it even harder to cope with dying. This failure causes deep pain for anyone who is stricken with a deadly disease, such as cancer. This failure causes deep pain for all men.
In his 1974 Pulitzer Prize-winning book, Ernest Becker, PhD, theorized that the denial of death is responsible for most of the horror created by mankind. Becker proposed that all men and women spend their lives building a personal myth to find meaning and traces of immortality in daily existence. Whom we love, what we do, what we believe, and essentially every decision we make are influenced by our need to deny death by giving eternal purpose to our lives.
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PALLIATIVE CARE AND END OF LIFE CARE
Palliative care aims to improve quality of life for patients with life-limiting illnesses. It is often linked to the care of people with cancer; however, patients with non-cancer end-stage chronic or complex conditions also have significant needs. The symptom burden and care needs for patients with end-stage, non-malignant illnesses are similar to those of patients with advanced cancer.
These patients benefit from a palliative approach, comprising:
page 6.
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Palliative care online resource:
Extensive Print resources... 11 July 2018
Carers
End of Life Directions for Aged Care (ELDAC)
ELDAC provides information, guidance, and resources to health professionals and aged care workers to support palliative care and advance care planning to improve the care of older Australians.
ELDAC Helpline
1800 870 155
The Minister for Health has announced a new program that will trial new ways to provide palliative care services, delivering the right care at the right time, while also aiming to reduce hospitalisations. The Government is funding a pilot program so people nearing the end of their lives receive better care and treatment at home. The $8.3 million program will trial new ways to provide palliative care services, delivering the right care at the right time, while also aiming to reduce hospitalisations.
The Greater Choice for At Home Palliative Care program will be rolled out in ten locations around Australia, enabling people living with a life limiting illness to receive care and treatment services in their home.
The program will be administered through Primary Health Networks across Australia, and will be coordinated with local and state services, as well as aged care providers. The trial runs until June 2020 and interested people and their families, in the trial areas, should contact their GP to discuss joining the program.
The ten Primary Health Networks which have been selected to take part in the trial include:
• Brisbane South;
• Central QLD, Wide Bay and Sunshine Coast;
• Gold Coast;
• South Western Sydney;
• Murrumbidgee;
• Western NSW;
• North Western Melbourne;
• Eastern Melbourne;
• Adelaide, and
• Country WA.
This could include services from a local GP, palliative, hospital and specialist care support, and community and social services – all coordinated to ensure the patient is supported. People will receive the right care at home, tailored to their own need, which will hopefully mean less trips to the hospital to access these services.
Mar 2, 2018
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In-Home End-of-Life care:
https://www.wellways.org/our-services/home-end-life-care
Wellways can arrange Palliative Nursing Care to provide Comfort and Support if you choose to stay at home surrounded by your loved ones.
Wellways works with you, your General Practitioner and other healthcare professionals to provide comfort and support to you, your family and friends as you near the end of your life’s journey.
If you choose to stay at home surrounded by your loved ones, we can arrange services and supports to meet your personal and medical needs with kindness and compassion. Our services include:
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If you or family members are receiving Palliative Care at Home, you may need access to palliative care medicines. The National Palliative Care Program is supporting better access to affordable medicines through the Pharmaceutical Benefits Scheme (PBS). This means that you or your family member may be able to obtain more medicines at less cost than before.
Palliative medicines are included in a special section of the Pharmaceutical Benefits Schedule. To find out more about these medicines, talk to your GP or visit the PBS website for Fact sheets and an A-Z search
http://www.pbs.gov.au/browse/palliative-care
Learning more:
http://www.palliativedrugs.com/download/090714_opioid_conversions.pdf
https://palliative.stanford.edu/opioid-conversion/equivalency-table/
Do note also that should your loved one suffer from late-stage advanced Dementia; they may also access Palliative Care.
If you find yourself asking, "Is palliative care/hospice care an option?" Palliative care is comfort care; unlike hospice care, the patient doesn't need to have a short-term prognosis.
A definition of palliative care by the World Health Organisation in 2017 states that palliative care should:
https://healthtalk.org/living-dying/information-palliative-care
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.
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.
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Sarcopenia is the loss of muscle mass, strength and function related to ageing. Sarcopenia and frailty are found in up to one-third of the general elderly population. Both are associated with major adverse health outcomes such as nursing home placement, disability, decreased quality of life. For more information go to : Sarcopenia
In people who have Parkinson's Disease who were in care the prevalence of sarcopenia was found to be much higher, as it was 55% and only 8% in people who did not have Parkinson's Disease. Frailty was detected in 35% of people with Parkinson's Disease.
http://www.viartis.net/parkinsons.disease/news/180920.pdf
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Greater choice for at home palliative care
What has changed?
The Government will fund at home palliative (end of life) care services for three years from 1 July 2017.
Who does this affect?
People with terminal illnesses who would prefer to stay at home rather than transition into hospital or hospice care at the end of their lives.
Palliative care is ideal for those with advanced dementia because it minimizes aggressive care, supports home care (but can also take place in facilities), and emphasizes following the preferences made in advance directives. A team of specialists provides care, which is also greatly supportive to caregivers.
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
And for all those other questions you will have: palassist.org.au
24/7 Palliative Care Helpline: 1800 772 273
We’re here and we care:
Palliative care: care for the terminally ill | Health and wellbeing | Queensland Government -
www.qld.gov.au search for "Palliative Care".
https://www.qld.gov.au/search?query=palliative+care&num_ranks=10&tiers=off&collection=qld-gov&profile=qld&start_rank=1
Palliative care offers specialised health care used to support people living with a life-limiting illness, their carers and families. Its about enabling the best possible quality of life for the patient by finding ways to relieve the symptoms of their illness. Support is also available for carers and family members.
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.
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PalAssist is a Queensland-wide, no-cost 24-hour telephone and online service for palliative care patients, carers, family and friends seeking practical information and emotional support. Our charter is to provide accurate information, referral advice and compassionate support to those dealing with a life-limiting or terminal illness.
PalAssist is operated by a team of health professionals with:
The 24-hour service is funded by Queensland Health and provided by Cancer Council Queensland. We are always here to offer trusted advice, or simply to listen.
How PalAssist supports you
Free palliative care support for Queenslanders:
Being diagnosed with a life-limiting illness is a daunting time, not just for the person receiving the diagnosis, but for their partners, family and friends.
Looking for clarity, patients and their families want to know what to expect, how care is coordinated, how much it will cost and how to talk to others about their experience. They often turn to a health care professional, for support and advice. You are not alone. PalAssist is a Queensland-wide, no-cost, 24-hour telephone and online service that offers individualised support and advice to help palliative care patients, carers, family and friends seeking practical, informational and emotional support.
PalAssist is operated by a team of registered nurses and health professionals, is funded by the Queensland Government and provided by Cancer Council Queensland. PalAssist is available to all Queenslanders 24 hours, seven days a week, on 1800 772 273 or online chat at palassist.org.au.
Palliative care support & advice 24/7 - free
Often people have very little idea about what happens as we die, how care will be coordinated, or how much it will cost. Understandably, this is a daunting time. The registered nurses and health professionals at PalAssist are here to assist you with:
PalAssist offers compassionate guidance to help you plan the end-of-life experience that is right for you. We will do all we can to empower you with the information and understanding you need to approach this difficult time on your own terms, with positivity, knowledge and grace.
Consider this:
Thinking of having your elderly loved one stay in their own home with Help, or placing them in a Residential Nursing Home or, as is often the case, in a hospital setting as their time nears? There are some questions that have no easy answer. What is the Best for your Loved One? What would they themselves Want if they had their choice? There is no such thing as a good or a bad death. Dying in an institution or a hospital setting is Not a failure of their healthcare. Nor is the fact that they are not able to be in their own home...
Bear in mind that many people as they approach death are unable to move, incontinent of urine and faeces and experience pain, breathlessness, anxiety or agitation. They also require around-the-clock care, people to assess and administer medications, clean up after them and two or three people to physically move them so they can remain comfortable.
This care often exceeds the practical skills of their elderly frail partner or is beyond the family's skill set. Having your loved one in a hospital or healthcare institution allows them to die with dignity and in comfort. You can still love and care for your loved one in a hospital or nursing home setting. It is just that Your role is somewhat different from giving Care in the Home setting. The Most Important thing for YOU to do now is to just Be There.
With heartfelt thanks to Dr Andrew Mulligan, Flemington, Vic whose understanding of end of life care is exceptional.
Directory of Services
http://palassist.org.au/services/
The PalAssist Service Directory provides information about services in the state and your local area including:
PalAssist Care Website is your first starting point: palassist.org.au/about-us/
http://www.palliativecare.org.au
is Online Palliative and End of Life Care information sources for Carers, family members and Professionals who wish to know more.
One question you will be asking yourself is, "What is the process of dying?"
How will I know what to expect?
What am I supposed to do?
Ask for help. It is alright to be afraid for the person. Yet the Most Important thing You can do now, is just to Be There.
Know that the moment of death is usually peaceful.
Symptom Assessment Scale (SAS)The Symptom Assessment Scale is a patient-rated tool that clinicians use to measure the amount of distress caused by seven of the most common symptoms in palliative care. Clinicians need to know how bothered, worried or distressed patients are by each of the systems in order to effectively manage their pain. A clinician asks the patient to rate their distress relating to each of the seven symptoms on a scale from 0 to 10, 0 being absent and 10 being severe.
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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.
05 March 2020
We, the families, are Deeply Grateful for this website. Something that most of us were not aware of. Many thanks.
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
An Outreach Service to assist palliative symptom management, and provide emotional support and relief for carers in the community.
Day Respite Centre, 11 Dunkirk Close, Arundel 4214 provides a day respite service Free of Charge for clients with life limiting illness over the age of 65 living at home with a carer.
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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Home Instead Senior Care – Gold Coast, Tweed & Northern Rivers
Phone: 07 5591 2444
Email: [email protected]
Website: http://www.homeinstead.com.au
69 Frinton Street, Southport QLD 4215
Type of Service(s) offered
Community support to patients in the home
Other Information
Home Instead Senior Care specialise in supporting individuals and families with end of life care at home. Our services are available at short notice and can be provided from as little as 2 hours up to 24 hours a day, 7 days a week. Our high quality care services are available nationally and include assistance with personal care, light household duties, meal preparation, medication reminders, incidental transport, companionship, specialist dementia care and palliative care support at home.
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And for Professionals who seek knowledge on this most important subject:
CareSearch is the Palliative Care Knowledge Network
http://www.caresearch.com.au/caresearch/WhatisPalliativeCare/tabid/63/Default.aspx
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Is your Loved One in pain?
Look here for an understanding of Pain and Pain Management:
https://www.pallcarevic.asn.au/library/for-families-patients/fp-about-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:
Search for an understanding of Pain -
https://www.nps.org.au/search?q=Pain&scope=nps&age=any&category=all&sort=most-relevant
Chronic Pain Australia can help you improve your knowledge and understanding about chronic pain across Australia
http://chronicpainaustralia.org.au/index.php
18 March 2021
"When I asked how he emotionally coped during the thousands of times he held those who were dying in his arms, he replied that you smile and be strong for them, because sometimes that’s all you can do.
Physicians are not here to prevent death! We are here to help patients live the highest quality of life and, when that is no longer possible, to facilitate the highest quality of death."
Special thanks to Dr. Patch Adams for this insight into what is Really Important in our lives.
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
How to access palliative care?
Last Updated at May 28th 2021
For older Australians near the end of their life, palliative care can be vital for optimising the quality of life they have before they pass, improving in both a physical, emotional, spiritual or social way.
- Palliative care is usually recommended by medical professionals to older Australians who are reaching the end of their life or have received an incurable disease diagnosis
- You should be able to receive palliative care from wherever you are based in Australia
- You don't have to access palliative care if you don't want to but it can improve your quality of life towards the end
You can ask your doctor to assist in organising palliative care for yourself if you want to receive the service. [Source: Shutterstock] However, palliative care is available early on into the diagnosis of an older person with an incurable illness.
Palliative care is personalised towards the care needs of an individual and is usually recommended for older people experiencing physical symptoms, like pain, vomiting and breathlessness, or emotional symptoms, like anxiety or loneliness.
Aiming to improve quality of life, palliative care is offered as a way in which that can be done when living with a life-limiting diagnosis.
NSW budget to fund 5,000 more end of life packages
An additional 5,000 End of Life Home Support packages will become available from next July as part of a $56 million palliative care package to be delivered in the NSW budget.
HammondCare CEO Mike Baird - The state budget will be handed down on November 17.
The home packages offer case management, personal care and domestic supports, as well as assistance with meals and transport.
Chief Executive of Palliative Care NSW Linda Hansen said the funding refleced a multi-disciplinary approach to palliative care.
“This funding recognises the vital role of allied health professionals in supporting the physical and mental health needs of patients at this difficult time,” Ms Hansen said.
“Extending the program of in-home support will mean that more people will be able to achieve their goal of being cared for at home.”
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Palliative Care will affect ALL of us at some stage in our lives, whether as a patient, carer, family member, neighbour or friend. Trustworthy information helps us to understand, plan and care...
https://www.caresearch.com.au/caresearch/tabid/64/Default.aspx
The Dying Process
Information and support to help carers to understand, anticipate and respond to some of the signs they may notice when their loved one is imminently dying
The dying process If you have never seen anyone die you may be afraid of what will happen, but the moment of death is usually peaceful. This brochure will help you to understand, anticipate and respond to some of the signs you may notice. Caring for a person during the last few weeks and days of life can be stressful and demanding. Many different feelings and emotions may surface at this time. Carers are often concerned that death will be a painful experience for the person. However, the time before death is generally peaceful. There is a gentle winding down that may take several days. The body starts to ‘let go’ of life. If restlessness does occur, it can be treated.
https://palliativecare.org.au/wp-content/uploads/2015/05/PCA002_The-Dying-Process_FA.pdf
Asking Questions Can Help - For Friends or Carers of People Approaching the Last Days of Life:
Guides friends or carers of people approaching the last days of life with questions to ask
http://www.cec.health.nsw.gov.au/__data/assets/pdf_file/0010/359290/1.-English-Asking-Questions-can-help-for-familyfriends.PDF
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
- Palliative care is usually recommended by medical professionals to older Australians who are reaching the end of their life or have received an incurable disease diagnosis
- You should be able to receive palliative care from wherever you are based in Australia
- You don't have to access palliative care if you don't want to but it can improve your quality of life towards the end
You can ask your doctor to assist in organising palliative care for yourself if you want to receive the service. [Source: Shutterstock]However, palliative care is available early on into the diagnosis of an older person with an incurable illness.
Palliative care is personalised towards the care needs of an individual and is usually recommended for older people experiencing physical symptoms, like pain, vomiting and breathlessness, or emotional symptoms, like anxiety or loneliness.
Aiming to improve quality of life, palliative care is offered as a way in which that can be done when living with a life-limiting diagnosis.
The Manage Dying Home Care Toolkit Educational Video (Module 4) identifies the signs and symptoms of dying and how to support a client dying at home.
Being a Family Carer - What's it all about?
The focus of palliative care is on the quality of life that is to be lived;
- making sure the person is as comfortable as possible,
- free from all avoidable pain and suffering.
- When the disease has finally run its course, death occurs naturally, ideally without unwanted or burdensome interventions.
- No matter how long or short the illness, palliative care offers support to the patient and the carers, preferably early in the disease process.
Who are the palliative care specialists?
Palliative care teams include health professionals who are qualified and experienced in caring for people with life-threatening disease. Australia has regional palliative care services, each one differing slightly from the others in the services they provide. Some include specially trained palliative care doctors, nurses, social workers, psychologists, physiotherapists, other therapists (such as speech/music/reminiscence), pastoral care workers, dieticians, bereavement counsellors, volunteers and coordinators of volunteers.
Who are palliative care volunteers?
Palliative care volunteers provide their service free of charge. They offer support to carers so the patient can remain at home for as long as possible. Volunteer services vary but can include being able to stay with your relative while you go out; taking your relative for a drive or to an appointment; they can mind children, write down someone’s life story, play music, answer the phone, provide simple beauty treatments or gentle massage, and offer companionship.
If you would like a volunteer to assist you, please ask the palliative care service. Please be mindful however that the volunteer availability does vary.
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Supporting a Person Who Needs Palliative Care A Guide For Family And Friends
This guidebook provides a comprehensive and practical resource for family carers of people diagnosed with a life threatening illness who require palliative care. It provides strategies to support them in what can be a very difficult but often rewarding experience. Providing the best support to a person who needs palliative care can be made easier by getting appropriate information and finding the relevant resources. This means knowing what questions to ask, when and who to ask, and importantly how to look after oneself. This guidebook has been written by experts, informed by the latest research. Most notably, it includes information from past family carers, who have been in a similar situation. We can learn from them, and the book contains valuable insights from their firsthand knowledge.
Family Carers (sometimes called ‘Carers’) are friends or relatives who provide care or support for the older person:
The booklet is a simplified summary of a much more detailed and technical document called Guidelines for a Palliative Approach for Aged Care in the Community Setting (referred to in this booklet as the ‘Community Care Guidelines’), which has been published by the Australian Government Department of Health and Ageing, Canberra.
This plain-English summary provides older people and their family carers with helpful information about good care practices for older people living in the community. Most of the information in this booklet is based on ‘good practice points’ agreed by the experts who developed the Community Care Guidelines described above.
Where the information is based on evidence from scientific studies, this is indicated as follows:
What the research shows Other types of information presented throughout this booklet are:
- Practical tip Clear instructions for things that you (the older person) need to do.
- Advice Additional advice for your for carers family carers. Case study Shows how advice in the booklet might work in practice.
- Contacts for further information are also given throughout the booklet.
- Telephone numbers Weblinks The full version of the Community Care Guidelines and accompanying booklets are available at:
- Weblink: www.caresearch.com.au
- Weblink: www.palliativecare.gov.au T
- Telephone: 1800 500 853
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.
For updates on COVID-19, see the ELDAC webpage: Being prepared for COVID-19.
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The place of spiritual care at the end of life:
- a sense of Connectiveness... a feeling of Forgiveness and Grace...
The Palliative Care Bridge is a state-wide, palliative care education program coordinated and delivered by the HammondCare consortium, comprising HammondCare, Sacred Heart Health Service and Calvary Healthcare Sydney.
In 2013, the HammondCare consortium received three years of funding from the NSW Ministry of Health to deliver a palliative care home support program to seven NSW LHDs and a state-wide palliative care education program. The education program is based around the Bridge, a website for the delivery of innovative educational videos by respected experts and specialists in their fields and other relevant resources. Our aim is to better equip users of the site to gain confidence and specialised knowledge in the delivery of appropriate palliative care to people in need.
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Ensuring quality of life for end of life patients
"It came home to me recently whilst visiting a patient at home (who was not expected to make it out of hospital) how much difference being in your own home makes. People have more autonomy, they tend to sleep better, they can eat foods of their choice and can interact better with those around them. At any level of capacity, it is empowering to the patient.
Necessarily there are a variety of supports that need to be in place. These are both for the individual and also for their carers. The GP is an important part of the team. For some GPs this can seem daunting and beyond their remit. This is not the case.
The family GP is best placed to do the medical management and to call in and draw on specialist support where needed. In some respects this type of care is not the “high tech heroics” that one might see on TV but the steady hand of knowledge that comes from knowing the person and the family.
Of course there are a myriad of other services to consider including cleaning, gardening, delivery and preparation of meals and respite care. Planning ahead is also part of the process. This is another role where the GP can be of enormous value."
The role of community pharmacists in palliative care
Pharmacists play an important role in the delivery of care for people receiving aged-care services.
The End of Life Directions for Aged Care (ELDAC) team are conducting a study looking at the role of community pharmacists providing palliative care for older Australians living in residential dwellings and community-based aged-care facilities. If you are currently working as a pharmacist in a community setting, please click on this link which has more information in the Participant Information Sheet.
Do read more articles on the behaviours and care of those who have dementia.
https://thinkgp.com.au/blog/ensuring-quality-life-end-life-patients
https://healthtalk.org/caring-someone-terminal-illness/overview
Ways of coping and finding solace
Caring for a friend or relative with a terminal illness can be physically and emotionally draining. Listen to how some Carers found coping strategies.
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.
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.
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
https://www.kevinmd.com/blog/2019/09/the-broader-mission-for-hospice-care.html
Elisabeth Kubler-Ross, MD proposed that there were five emotional phases to coping with fatal disease.
- First, denial; it must be a mistake.
- Then anger, fight or flight,
- there must be someone to blame.
- Sometimes, there is bargaining, try to make a deal; perhaps God will trade for more time. Many patients suffer from depression, as hope is hard to maintain.
- Finally, the critical stage, acceptance. There may be an element of calm; a final understanding of one’s mortality and a peaceful acquiescence to reality. Death closure.
No one goes through these stages in the same way or in the same order, and not everyone goes through each stage at all. Emotions mix and match, and members of a family are rarely at the same place in the grieving process. Often patients do not get beyond the first two stages, and many die astonished and angry. Relatively few patients fully accept what is happening. Rarer still are patients such as Ester who move directly to acceptance, avoiding the anguish of the other stages. Why not?
Every person more than seven years old knows that life is terminal. Nonetheless, most people do not emotionally prepare for what is going to happen. Instead, it is argued, we do the opposite, creating illusions of immortality that make it even harder to cope with dying. This failure causes deep pain for anyone who is stricken with a deadly disease, such as cancer. This failure causes deep pain for all men.
In his 1974 Pulitzer Prize-winning book, Ernest Becker, PhD, theorized that the denial of death is responsible for most of the horror created by mankind. Becker proposed that all men and women spend their lives building a personal myth to find meaning and traces of immortality in daily existence. Whom we love, what we do, what we believe, and essentially every decision we make are influenced by our need to deny death by giving eternal purpose to our lives.
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PALLIATIVE CARE AND END OF LIFE CARE
Palliative care aims to improve quality of life for patients with life-limiting illnesses. It is often linked to the care of people with cancer; however, patients with non-cancer end-stage chronic or complex conditions also have significant needs. The symptom burden and care needs for patients with end-stage, non-malignant illnesses are similar to those of patients with advanced cancer.
These patients benefit from a palliative approach, comprising:
- management of the underlying condition and attention to symptoms,
- psychosocial needs and carer support.
- Advance care planning provides an opportunity to prepare for future illness episodes, including provision of end-of-life care.
- General practitioners are well placed to provide palliative care for patients with advanced non-cancer illnesses.
page 6.
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Palliative care online resource:
Extensive Print resources... 11 July 2018
Carers
- Caring for Someone with Life-limiting Illness (427kb pdf)
CareSearch - Managing Life-limiting Illness with Medicines (417kb pdf)
CareSearch - Practical Caring: At the end of life (90kb pdf)
CareSearch - Are You a Carer? (221kb pdf)
CareSearch - Asking for help (256kb pdf)
CareSearch - Become informed (242kb pdf)
CareSearch - Being prepared (252kb pdf)
CareSearch - Carers are not all the same (255kb pdf)
CareSearch - Caring needs differ (215kb pdf)
CareSearch - Coping with holidays (239kb pdf)
CareSearch - Financial matters (235kb pdf)
CareSearch - Grief and loss (208kb pdf)
CareSearch - How do you care (228kb pdf)
CareSearch - Support is important (224kb pdf)
CareSearch - Things happen (254kb pdf)
CareSearch - Resources for carers (1.4MB pdf)
A pamphlet from Palliative Care Victoria - Looking after yourself (1.39MB pdf)
A pamphlet from Palliative Care Victoria - How and why to get family to help with caring (56kb pdf)
Information sheet for carers from Carers Victoria
End of Life Directions for Aged Care (ELDAC)
ELDAC provides information, guidance, and resources to health professionals and aged care workers to support palliative care and advance care planning to improve the care of older Australians.
ELDAC Helpline
1800 870 155
The Minister for Health has announced a new program that will trial new ways to provide palliative care services, delivering the right care at the right time, while also aiming to reduce hospitalisations. The Government is funding a pilot program so people nearing the end of their lives receive better care and treatment at home. The $8.3 million program will trial new ways to provide palliative care services, delivering the right care at the right time, while also aiming to reduce hospitalisations.
The Greater Choice for At Home Palliative Care program will be rolled out in ten locations around Australia, enabling people living with a life limiting illness to receive care and treatment services in their home.
The program will be administered through Primary Health Networks across Australia, and will be coordinated with local and state services, as well as aged care providers. The trial runs until June 2020 and interested people and their families, in the trial areas, should contact their GP to discuss joining the program.
The ten Primary Health Networks which have been selected to take part in the trial include:
• Brisbane South;
• Central QLD, Wide Bay and Sunshine Coast;
• Gold Coast;
• South Western Sydney;
• Murrumbidgee;
• Western NSW;
• North Western Melbourne;
• Eastern Melbourne;
• Adelaide, and
• Country WA.
This could include services from a local GP, palliative, hospital and specialist care support, and community and social services – all coordinated to ensure the patient is supported. People will receive the right care at home, tailored to their own need, which will hopefully mean less trips to the hospital to access these services.
Mar 2, 2018
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In-Home End-of-Life care:
https://www.wellways.org/our-services/home-end-life-care
Wellways can arrange Palliative Nursing Care to provide Comfort and Support if you choose to stay at home surrounded by your loved ones.
Wellways works with you, your General Practitioner and other healthcare professionals to provide comfort and support to you, your family and friends as you near the end of your life’s journey.
If you choose to stay at home surrounded by your loved ones, we can arrange services and supports to meet your personal and medical needs with kindness and compassion. Our services include:
- home help
- personal care
- nursing care
- pain management
- liaison with the GP and other services
- TLC and emotional support
- respite support for care givers
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If you or family members are receiving Palliative Care at Home, you may need access to palliative care medicines. The National Palliative Care Program is supporting better access to affordable medicines through the Pharmaceutical Benefits Scheme (PBS). This means that you or your family member may be able to obtain more medicines at less cost than before.
Palliative medicines are included in a special section of the Pharmaceutical Benefits Schedule. To find out more about these medicines, talk to your GP or visit the PBS website for Fact sheets and an A-Z search
http://www.pbs.gov.au/browse/palliative-care
Learning more:
http://www.palliativedrugs.com/download/090714_opioid_conversions.pdf
https://palliative.stanford.edu/opioid-conversion/equivalency-table/
Do note also that should your loved one suffer from late-stage advanced Dementia; they may also access Palliative Care.
If you find yourself asking, "Is palliative care/hospice care an option?" Palliative care is comfort care; unlike hospice care, the patient doesn't need to have a short-term prognosis.
A definition of palliative care by the World Health Organisation in 2017 states that palliative care should:
https://healthtalk.org/living-dying/information-palliative-care
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.
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.
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Sarcopenia is the loss of muscle mass, strength and function related to ageing. Sarcopenia and frailty are found in up to one-third of the general elderly population. Both are associated with major adverse health outcomes such as nursing home placement, disability, decreased quality of life. For more information go to : Sarcopenia
In people who have Parkinson's Disease who were in care the prevalence of sarcopenia was found to be much higher, as it was 55% and only 8% in people who did not have Parkinson's Disease. Frailty was detected in 35% of people with Parkinson's Disease.
http://www.viartis.net/parkinsons.disease/news/180920.pdf
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Greater choice for at home palliative care
What has changed?
The Government will fund at home palliative (end of life) care services for three years from 1 July 2017.
Who does this affect?
People with terminal illnesses who would prefer to stay at home rather than transition into hospital or hospice care at the end of their lives.
Palliative care is ideal for those with advanced dementia because it minimizes aggressive care, supports home care (but can also take place in facilities), and emphasizes following the preferences made in advance directives. A team of specialists provides care, which is also greatly supportive to caregivers.
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
And for all those other questions you will have: palassist.org.au
24/7 Palliative Care Helpline: 1800 772 273
We’re here and we care:
Palliative care: care for the terminally ill | Health and wellbeing | Queensland Government -
www.qld.gov.au search for "Palliative Care".
https://www.qld.gov.au/search?query=palliative+care&num_ranks=10&tiers=off&collection=qld-gov&profile=qld&start_rank=1
Palliative care offers specialised health care used to support people living with a life-limiting illness, their carers and families. Its about enabling the best possible quality of life for the patient by finding ways to relieve the symptoms of their illness. Support is also available for carers and family members.
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.
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PalAssist is a Queensland-wide, no-cost 24-hour telephone and online service for palliative care patients, carers, family and friends seeking practical information and emotional support. Our charter is to provide accurate information, referral advice and compassionate support to those dealing with a life-limiting or terminal illness.
PalAssist is operated by a team of health professionals with:
- nursing,
- social work and
- counselling experience, who understand that every person’s journey is different and put the customer at the centre of every consideration.
The 24-hour service is funded by Queensland Health and provided by Cancer Council Queensland. We are always here to offer trusted advice, or simply to listen.
How PalAssist supports you
Free palliative care support for Queenslanders:
Being diagnosed with a life-limiting illness is a daunting time, not just for the person receiving the diagnosis, but for their partners, family and friends.
Looking for clarity, patients and their families want to know what to expect, how care is coordinated, how much it will cost and how to talk to others about their experience. They often turn to a health care professional, for support and advice. You are not alone. PalAssist is a Queensland-wide, no-cost, 24-hour telephone and online service that offers individualised support and advice to help palliative care patients, carers, family and friends seeking practical, informational and emotional support.
PalAssist is operated by a team of registered nurses and health professionals, is funded by the Queensland Government and provided by Cancer Council Queensland. PalAssist is available to all Queenslanders 24 hours, seven days a week, on 1800 772 273 or online chat at palassist.org.au.
Palliative care support & advice 24/7 - free
Often people have very little idea about what happens as we die, how care will be coordinated, or how much it will cost. Understandably, this is a daunting time. The registered nurses and health professionals at PalAssist are here to assist you with:
- Accurate and up-to-date information about palliative care
- Emotional, practical and informational support
- Referral to local services that provide either home care or in-patient facility palliative care for you or your loved one.
PalAssist offers compassionate guidance to help you plan the end-of-life experience that is right for you. We will do all we can to empower you with the information and understanding you need to approach this difficult time on your own terms, with positivity, knowledge and grace.
Consider this:
Thinking of having your elderly loved one stay in their own home with Help, or placing them in a Residential Nursing Home or, as is often the case, in a hospital setting as their time nears? There are some questions that have no easy answer. What is the Best for your Loved One? What would they themselves Want if they had their choice? There is no such thing as a good or a bad death. Dying in an institution or a hospital setting is Not a failure of their healthcare. Nor is the fact that they are not able to be in their own home...
Bear in mind that many people as they approach death are unable to move, incontinent of urine and faeces and experience pain, breathlessness, anxiety or agitation. They also require around-the-clock care, people to assess and administer medications, clean up after them and two or three people to physically move them so they can remain comfortable.
This care often exceeds the practical skills of their elderly frail partner or is beyond the family's skill set. Having your loved one in a hospital or healthcare institution allows them to die with dignity and in comfort. You can still love and care for your loved one in a hospital or nursing home setting. It is just that Your role is somewhat different from giving Care in the Home setting. The Most Important thing for YOU to do now is to just Be There.
With heartfelt thanks to Dr Andrew Mulligan, Flemington, Vic whose understanding of end of life care is exceptional.
Directory of Services
http://palassist.org.au/services/
The PalAssist Service Directory provides information about services in the state and your local area including:
- specialist palliative care,
- accommodation,
- transport,
- allied health services,
- medical aids/equipment,
- financial/legal,
- emotional and spiritual support.
PalAssist Care Website is your first starting point: palassist.org.au/about-us/
http://www.palliativecare.org.au
is Online Palliative and End of Life Care information sources for Carers, family members and Professionals who wish to know more.
One question you will be asking yourself is, "What is the process of dying?"
How will I know what to expect?
What am I supposed to do?
Ask for help. It is alright to be afraid for the person. Yet the Most Important thing You can do now, is just to Be There.
Know that the moment of death is usually peaceful.
Symptom Assessment Scale (SAS)The Symptom Assessment Scale is a patient-rated tool that clinicians use to measure the amount of distress caused by seven of the most common symptoms in palliative care. Clinicians need to know how bothered, worried or distressed patients are by each of the systems in order to effectively manage their pain. A clinician asks the patient to rate their distress relating to each of the seven symptoms on a scale from 0 to 10, 0 being absent and 10 being severe.
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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.
05 March 2020
We, the families, are Deeply Grateful for this website. Something that most of us were not aware of. Many thanks.
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
An Outreach Service to assist palliative symptom management, and provide emotional support and relief for carers in the community.
Day Respite Centre, 11 Dunkirk Close, Arundel 4214 provides a day respite service Free of Charge for clients with life limiting illness over the age of 65 living at home with a carer.
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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Home Instead Senior Care – Gold Coast, Tweed & Northern Rivers
Phone: 07 5591 2444
Email: [email protected]
Website: http://www.homeinstead.com.au
69 Frinton Street, Southport QLD 4215
Type of Service(s) offered
Community support to patients in the home
Other Information
Home Instead Senior Care specialise in supporting individuals and families with end of life care at home. Our services are available at short notice and can be provided from as little as 2 hours up to 24 hours a day, 7 days a week. Our high quality care services are available nationally and include assistance with personal care, light household duties, meal preparation, medication reminders, incidental transport, companionship, specialist dementia care and palliative care support at home.
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And for Professionals who seek knowledge on this most important subject:
CareSearch is the Palliative Care Knowledge Network
http://www.caresearch.com.au/caresearch/WhatisPalliativeCare/tabid/63/Default.aspx
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Is your Loved One in pain?
Look here for an understanding of Pain and Pain Management:
https://www.pallcarevic.asn.au/library/for-families-patients/fp-about-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:
Search for an understanding of Pain -
https://www.nps.org.au/search?q=Pain&scope=nps&age=any&category=all&sort=most-relevant
Chronic Pain Australia can help you improve your knowledge and understanding about chronic pain across Australia
http://chronicpainaustralia.org.au/index.php
18 March 2021