Understanding terminal illness
A terminal illness is an incurable condition that is likely to cause a person to die within days, weeks, months or sometimes more than a year.
Some of the common medical conditions of people requiring care at the end of life include:
Treatment and care
There are many types of care and support available to assist patients, family members and carers through all stages of a terminal illness. The goal of caring for people at the end of life is to ensure the best possible quality of life, with a focus on:
What is planning ahead?
https://www.dementia.org.au/files/start2talk/Information-and-worksheets-to-guide-your-thinking-and-discussion-in-planning-ahead.pdf
Planning ahead is thinking about your future, and putting things in place so that your choices will be known and acted on if you cannot express these choices later on in life. This may happen if you have a sudden accident, become very ill or develop a condition like dementia that affects your memory and your planning ability.
Planning ahead involves talking to your family and your doctor about what is important to you. It might also involve organising who will make decisions for you if you are not able to.
Why is planning ahead important?
• You still have a say in how decisions are made for you if you can no longer speak for yourself.
• It helps your loved ones if they have to make decisions for you at some time in the future.
• It can give you peace of mind now, because you have told your loved ones your wishes and given both you and them a chance to prepare for the future.
• It is important for everyone, but particularly for people with chronic health conditions or early signs of dementia.
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‘A Beginner’s Guide to the End
https://hellocaremail.com.au/benefits-making-die-file/
Practical Advice for Living Life and Facing Death’ is a practical and compassionate ‘user guide’ for the end of life, written by editorial director, Shoshana Berger, and palliative care doctor, Dr BJ Miller.
You might keep your ‘When I die file’ in your filing cabinet, in a drawer in your desk, or even in a shoe box. The main thing is it’s easy for your loved ones to find and access.
The book recommends a number of items that could be included in a ‘When I die file’, including:
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An ‘Action Plan’ For The End Of Life
The book is an ‘action plan’ for approaching the end of life.
It shows readers how they can control what happens to them as death approaches, from how to tell your employer you have a terminal illness, to how to say goodbye to friends and family, and talking to your children about your will. It is also a manual for those who are caring for someone who is dying.
Components of advance care planning Advance care plans
https://agedcare.royalcommission.gov.au/publications/Documents/background-paper-5.pdf
page 2 of 11
Advance care planning is a broad concept. It may take the form of structured conversations with health professionals or informal discussions with family and friends.
Advance care planning does not always result in written documents.
The conversations themselves can be very beneficial.
Ideally though, advance care planning leads to a written advance care plan outlining a person’s preferences for future health and personal care.
Advance care plans are relied on only if a person loses their ability to make or express their own decisions. Advance care plans may be a letter to the person responsible for the decision-making, an entry in a medical report, an oral instruction or any other form of communication.
It may also take the form of a more formal document like an ‘advance directive’ or an instrument appointing a substitute decision-maker.
Advance directives An advance directive is a formal document that records a person’s directions for their future care and treatment. Advance directives are not the same as clinical care plans, treatment plans or resuscitation plans prepared by clinicians to guide clinical care.
Advance directives have traditionally been narrowly focused on specific medical treatment decisions. Increasingly, directives are including broader information about a person’s values, goals and what is important to them in life.
Advance directives are recognised in all states and territories, though there are variations in terminology and scope. In the Australian Capital Territory, Northern Territory, Queensland, South Australia and Western Australia, advance directives are provided for in legislation. New South Wales and Tasmania do not have legislation providing for advance directives, but legally binding advance directives can still be made.
All states and territories have specific forms that can be used to make an advance directive.
This paper was published on 20 June 2019.
Now that YOU have taken that first step to help your loved one, do have a think about talking about and setting up your own Advance Care Planning:
Advanced illness or serious injury can sometimes mean that people cannot make their own decisions about healthcare treatment. This can happen to people of all ages, and especially towards end of life. Writing an Advance Care Plan lets you say what you would want, if you are ever unable to communicate for yourself. Making healthcare decisions for others can be difficult. An advance care plan can give peace of mind and comfort as preferences are clear, understood and respected.
The prevalence of potentially inappropriate medication (PIMs) among home nursing clients is very high, a study has found, with three quarters of this group taking drugs linked to a risk of adverse events including falls and hospitalisation.
It also suggests that the message may not be getting through to GPs, who might just be replacing one inappropriate medicine with another.
The findings arose after an evaluation of a pharmacist home-visit program carried out in Melbourne between July 2017-June 2018.
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The Legal Toolkit provides practical information about the law at end of life for the aged care sector. It contains useful resources on end of life legal issues commonly encountered in aged care to help you to know the law and to support your practice. To find out more, read our Legal factsheet (701kb pdf).
02 March 2020
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Advance Care Planning Advisory Service Support Care Planning is available Monday to Friday 9am to 5pm AEST
Just call 1300 208 582 and have a confidential chat. Do ask questions as these are The people to ask.
Care at the end of life may be provided in your home, hospital, palliative care unit, a residential aged care facility or hospice, and is available for people at any age. The type of care and support provided at the end of your life will depend on your needs. You may receive:
Aged care and palliative care: what’s the difference?
To ask what is the difference between aged care and palliative care is to focus on the impeccable assessment of every older person who can no longer live independently and ask whether they would benefit from the least burdensome form of care and to be offered the best form of comfort care until the end of life.
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
Understanding the dying process
Many older persons living in residential aged care facilities are frail and may also suffer from one or more long-lasting illnesses. As their illnesses progress they can affect the major organs of the body, including the brain, heart, lungs, liver and kidneys. During the last days of their life, staff and family members may notice that the resident’s condition gets worse quite quickly. The changes during the dying process will vary from resident to resident with some residents becoming unconscious a few days prior to dying while others may deteriorate relatively quickly, or may even remain awake to some extent right up until they die.
One of the meanings of ‘palliate’ is ‘to cover with a cloak of care’.
Looking closely at the WHO definition, it is evident that most aged care residents and community clients/patients would benefit from the:
A conversation on death and hope a pediatric palliative care physician
ANGIE ANDERSON, MD, AMADOR DELAMERCED, AND LINDSEY PILEIKA PHYSICIAN AUGUST 1, 2021
From a provider’s perspective, how can you be there for patients and their loved ones at the end of life?
If you’re talking about death and dying with patients and their families, maybe what lies beyond is something beautiful.
LP: And when patients are dying, what do your conversations with patients and families look like?
AA: At least for my patients and their families, if you walk in the room at any point, sometimes people are crying; other times, we’re cracking jokes about something they did; or maybe we’re talking about something that was neat or special about them.
You’re meeting people frequently at maybe the worst, scariest or most emotional time of their lives.
All you’re trying to do is walk that road with them so that they don’t feel so alone or scared. The hope is that their loved one’s passing is peaceful, loving and a time to share, remember and be grateful.
Part of what we try to do, then, is to help families come to a place where they can be more open and say what they want or need to say. It doesn’t mean those more open conversations aren’t difficult. But they do allow both sides to express their feelings.
TD: You have this beautiful perspective that the great beyond is a realm of possibilities rather than emptiness. It moves me because I feel that humanity has a tendency to dream and imagine and think about what lies beyond. I’ve worked on teams that have lost a patient. But only once did my team have a conversation about that loss.
------------------------------------------------------------------------------------------------------------
Guide to the Pharmacological Management of End of Life (Terminal) Symptoms in Residential Aged Care Residents:
A Resource for General Practitioners
Focuses on the pharmacological management of common end of life (terminal) symptoms experienced by dying residents. An evidence-based guide for GPs when leading and case managing the terminal care provided by multidisciplinary clinical teams in Australian residential aged care settings.
Download the document:
https://www.caresearch.com.au/Caresearch/tabid/3589/Default.aspx
Residential Aged Care Palliative Approach Toolkit
-----------------
The PalliAGED program
Older Australians are generally fit and well and most are living in their own home. Over time they may need more support and there are many different services that can help them remain independent. However, some because of cognitive issues such as dementia or specific conditions like breathlessness may need more care. Families are often involved in providing this support and care, directly or indirectly.
As an older person ages, they will become frailer and underlying conditions may worsen and they will enter the last phase of their life. Understanding how things will change as the older person moves towards death and by talking about what type of care will be needed is often helpful for both the person and the family.
These pages provide information on palliative care and end of life care and on services and resources that can help the person and their families. It features new medications, medical practice, models of care, advice on cultural and other considerations, symptoms and treatment decisions, risk analysis, ways to support people and their families and public and consumer experience.
End of Life Health
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.
22 November 2018
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.
We, the families, are Deeply Grateful for this website. Something that most of us were not aware of. Many thanks.
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Your loved one’s needs:
Thinking about the needs of our loved ones in Palliative Care.
Kuhl's research confirmed what he had seen among thousands of dying patients in his clinical practice: that the most important thing to them was "connection" -- with their true selves, with their children and other loved ones, and with a spiritual something bigger than themselves.
Care providers
People who may provide care at the end of life include:
Palliative care
Some people may receive specialist palliative care, which is specialised health care to support people with a terminal condition who are experiencing severe or complex symptoms.
Hospice care
Hospice is appropriate for patients with a life limiting illness and usually with a life expectancy of 6 months or less. Of course, no one can predict the exact course of a terminal illness and there are patients who are in hospice longer than 6 months, unfortunately because of fear, lack of understanding and lack of communication, most people have hospice services only a very short period of time, sometimes days. This denies the patient and loved ones the full services that hospice can offer. I suggest you contact a local hospice and have someone come in and have an honest discussion with your loved one and you so you can make an informed decision.
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.
How is hospice care delivered?
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.
Costs of Living at Hopewell:
As a Licensed Private Health Facility, Hopewell Hospice is able to bulk bill the Funds of those with Private Health Insurance. This covers all costs apart for an administration fees at entry. A contract with the Department of Veterans Affairs covers all costs for DVA pensioners. For those without private health insurance, accommodation fees can be negotiated.
Services:
to learn more about Hospice care:
http://www.kindredhealthcare.com/what-we-do/patient-and-caregiver/blog/2016/10/20/hospice-care--what-you-may-not-know/
People who approach the end of life are often less afraid of death than they are of what may come during the dying process. Hospice care addressees this issue by offering a personalized plan of care based on each individual’s progress and needs.
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Grief is a normal response that follows a significant change or loss which may affect someone's life. Grief is a process of coming to terms with what has changed in life. There is no right or wrong way to do it, and no timeline on how long you will grieve for.
You may be able to deal with your grief with the help of family and friends, or you may need some extra support.
Signs of grief
Some people are open and expressive with their grief, for example crying, and wanting to talk, while others are more private, and may be reluctant to talk.
A grieving person may experience intense thoughts and feelings such as sadness, anger, fear, anxiety, disbelief, panic, relief, shame and nostalgia.
Grief can include both physical and emotional distress. Signs of distress can include:
Support services
There are many organisations that can help you understand and cope with grief and loss. Get help with grief counselling and support.
Specialist palliative care services can help with accessing a social worker or psychologist. Your general practitioner will also be able to refer you to an appropriate service.
PalAssist
PalAssist is a free Queensland 24-hour telephone and online service specifically for palliative care patients, carers, family and friends seeking practical information and emotional support.
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
A terminal illness is an incurable condition that is likely to cause a person to die within days, weeks, months or sometimes more than a year.
Some of the common medical conditions of people requiring care at the end of life include:
- cancer
- dementia, including Alzheimer's disease
- advanced lung, heart, kidney and liver disease
- stroke and other neurological diseases, including motor neurone disease and multiple sclerosis
Treatment and care
There are many types of care and support available to assist patients, family members and carers through all stages of a terminal illness. The goal of caring for people at the end of life is to ensure the best possible quality of life, with a focus on:
- symptom control
- independence Hospice Care
- emotional wellbeing
- planning for the future
- look to doing your own Advanced Health Directive so all the medical people and staff Know your wishes.
What is planning ahead?
https://www.dementia.org.au/files/start2talk/Information-and-worksheets-to-guide-your-thinking-and-discussion-in-planning-ahead.pdf
Planning ahead is thinking about your future, and putting things in place so that your choices will be known and acted on if you cannot express these choices later on in life. This may happen if you have a sudden accident, become very ill or develop a condition like dementia that affects your memory and your planning ability.
Planning ahead involves talking to your family and your doctor about what is important to you. It might also involve organising who will make decisions for you if you are not able to.
Why is planning ahead important?
• You still have a say in how decisions are made for you if you can no longer speak for yourself.
• It helps your loved ones if they have to make decisions for you at some time in the future.
• It can give you peace of mind now, because you have told your loved ones your wishes and given both you and them a chance to prepare for the future.
• It is important for everyone, but particularly for people with chronic health conditions or early signs of dementia.
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‘A Beginner’s Guide to the End
https://hellocaremail.com.au/benefits-making-die-file/
Practical Advice for Living Life and Facing Death’ is a practical and compassionate ‘user guide’ for the end of life, written by editorial director, Shoshana Berger, and palliative care doctor, Dr BJ Miller.
You might keep your ‘When I die file’ in your filing cabinet, in a drawer in your desk, or even in a shoe box. The main thing is it’s easy for your loved ones to find and access.
The book recommends a number of items that could be included in a ‘When I die file’, including:
- An advance health care directive.
- A letter to the people you love.
- A list of logins and passwords, including for social media.
- Your will.
- Marriage or divorce certificates.
- Funeral directives, such as the music you want played, or whether you want to be cremated or buried.
- Details about how you would like to be cared for, for example, how do you like to lie in bed, or how do you like your tea served?
- The authors also recommend you include something that will be meaningful for your loved ones, such as a favourite recipe or a piece of music.
- The authors gave the example of a woman who included a eulogy to her husband in her file, so that even if she died first, she would be able to pay tribute to him when he passed away.
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An ‘Action Plan’ For The End Of Life
The book is an ‘action plan’ for approaching the end of life.
It shows readers how they can control what happens to them as death approaches, from how to tell your employer you have a terminal illness, to how to say goodbye to friends and family, and talking to your children about your will. It is also a manual for those who are caring for someone who is dying.
Components of advance care planning Advance care plans
https://agedcare.royalcommission.gov.au/publications/Documents/background-paper-5.pdf
page 2 of 11
Advance care planning is a broad concept. It may take the form of structured conversations with health professionals or informal discussions with family and friends.
Advance care planning does not always result in written documents.
The conversations themselves can be very beneficial.
Ideally though, advance care planning leads to a written advance care plan outlining a person’s preferences for future health and personal care.
Advance care plans are relied on only if a person loses their ability to make or express their own decisions. Advance care plans may be a letter to the person responsible for the decision-making, an entry in a medical report, an oral instruction or any other form of communication.
It may also take the form of a more formal document like an ‘advance directive’ or an instrument appointing a substitute decision-maker.
Advance directives An advance directive is a formal document that records a person’s directions for their future care and treatment. Advance directives are not the same as clinical care plans, treatment plans or resuscitation plans prepared by clinicians to guide clinical care.
Advance directives have traditionally been narrowly focused on specific medical treatment decisions. Increasingly, directives are including broader information about a person’s values, goals and what is important to them in life.
Advance directives are recognised in all states and territories, though there are variations in terminology and scope. In the Australian Capital Territory, Northern Territory, Queensland, South Australia and Western Australia, advance directives are provided for in legislation. New South Wales and Tasmania do not have legislation providing for advance directives, but legally binding advance directives can still be made.
All states and territories have specific forms that can be used to make an advance directive.
This paper was published on 20 June 2019.
Now that YOU have taken that first step to help your loved one, do have a think about talking about and setting up your own Advance Care Planning:
- Ask yourself, what if YOU were very unwell, and not able to communicate your wishes to others,
- Who would you want to speak for you?
- What would you want them to say?
Advanced illness or serious injury can sometimes mean that people cannot make their own decisions about healthcare treatment. This can happen to people of all ages, and especially towards end of life. Writing an Advance Care Plan lets you say what you would want, if you are ever unable to communicate for yourself. Making healthcare decisions for others can be difficult. An advance care plan can give peace of mind and comfort as preferences are clear, understood and respected.
The prevalence of potentially inappropriate medication (PIMs) among home nursing clients is very high, a study has found, with three quarters of this group taking drugs linked to a risk of adverse events including falls and hospitalisation.
It also suggests that the message may not be getting through to GPs, who might just be replacing one inappropriate medicine with another.
The findings arose after an evaluation of a pharmacist home-visit program carried out in Melbourne between July 2017-June 2018.
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The Legal Toolkit provides practical information about the law at end of life for the aged care sector. It contains useful resources on end of life legal issues commonly encountered in aged care to help you to know the law and to support your practice. To find out more, read our Legal factsheet (701kb pdf).
02 March 2020
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Advance Care Planning Advisory Service Support Care Planning is available Monday to Friday 9am to 5pm AEST
Just call 1300 208 582 and have a confidential chat. Do ask questions as these are The people to ask.
Care at the end of life may be provided in your home, hospital, palliative care unit, a residential aged care facility or hospice, and is available for people at any age. The type of care and support provided at the end of your life will depend on your needs. You may receive:
- medical reviews, assessments, scans and blood tests
- medications and procedures
- guidance and help with accessing information and resources
- short-term care relief and respite care
- counselling and emotional support
- bereavement support for family and carers after the patient's death
- Spiritual care is an integral part of palliative care.
A palliative approach includes spiritual assessment, and the involvement of appropriately trained staff.
There are gaps in understanding about spirituality and spiritual care across the community, including amongst aged care staff and organisational leaders.
Further education and specific funding is needed, for spiritual care practitioners to function as part of the team in the palliative approach.
Religious and spiritual beliefs can affect decision-making about treatment, medicine and self-care as well as expectations of, and relationships, with health and aged care service providers.
Individualised spirituality-based interventions can lead to lower depression scores and reduced anxiety.
Cross-disciplinary palliative care is required to address psychosocial and spiritual needs at end-of-life in long-term care settings.
Aged care and palliative care: what’s the difference?
To ask what is the difference between aged care and palliative care is to focus on the impeccable assessment of every older person who can no longer live independently and ask whether they would benefit from the least burdensome form of care and to be offered the best form of comfort care until the end of life.
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
Understanding the dying process
Many older persons living in residential aged care facilities are frail and may also suffer from one or more long-lasting illnesses. As their illnesses progress they can affect the major organs of the body, including the brain, heart, lungs, liver and kidneys. During the last days of their life, staff and family members may notice that the resident’s condition gets worse quite quickly. The changes during the dying process will vary from resident to resident with some residents becoming unconscious a few days prior to dying while others may deteriorate relatively quickly, or may even remain awake to some extent right up until they die.
One of the meanings of ‘palliate’ is ‘to cover with a cloak of care’.
Looking closely at the WHO definition, it is evident that most aged care residents and community clients/patients would benefit from the:
- impeccable assessment,
- closely monitored symptom management, and
- carefully applied cloak of comfort palliative care offers.
- Some treating doctors are unaware of the application of palliative care principles in residential or community care.
- If a feeding tube is recommended to deal with difficulty swallowing (as often happens to someone with severe dementia), think long and hard before giving the green light. Although feeding tubes are common practice in late-stage dementia, they haven't been shown to improve functional or nutritional status -- or to prolong life.
A conversation on death and hope a pediatric palliative care physician
ANGIE ANDERSON, MD, AMADOR DELAMERCED, AND LINDSEY PILEIKA PHYSICIAN AUGUST 1, 2021
From a provider’s perspective, how can you be there for patients and their loved ones at the end of life?
If you’re talking about death and dying with patients and their families, maybe what lies beyond is something beautiful.
LP: And when patients are dying, what do your conversations with patients and families look like?
AA: At least for my patients and their families, if you walk in the room at any point, sometimes people are crying; other times, we’re cracking jokes about something they did; or maybe we’re talking about something that was neat or special about them.
You’re meeting people frequently at maybe the worst, scariest or most emotional time of their lives.
All you’re trying to do is walk that road with them so that they don’t feel so alone or scared. The hope is that their loved one’s passing is peaceful, loving and a time to share, remember and be grateful.
Part of what we try to do, then, is to help families come to a place where they can be more open and say what they want or need to say. It doesn’t mean those more open conversations aren’t difficult. But they do allow both sides to express their feelings.
TD: You have this beautiful perspective that the great beyond is a realm of possibilities rather than emptiness. It moves me because I feel that humanity has a tendency to dream and imagine and think about what lies beyond. I’ve worked on teams that have lost a patient. But only once did my team have a conversation about that loss.
------------------------------------------------------------------------------------------------------------
Guide to the Pharmacological Management of End of Life (Terminal) Symptoms in Residential Aged Care Residents:
A Resource for General Practitioners
Focuses on the pharmacological management of common end of life (terminal) symptoms experienced by dying residents. An evidence-based guide for GPs when leading and case managing the terminal care provided by multidisciplinary clinical teams in Australian residential aged care settings.
Download the document:
https://www.caresearch.com.au/Caresearch/tabid/3589/Default.aspx
Residential Aged Care Palliative Approach Toolkit
-----------------
The PalliAGED program
Older Australians are generally fit and well and most are living in their own home. Over time they may need more support and there are many different services that can help them remain independent. However, some because of cognitive issues such as dementia or specific conditions like breathlessness may need more care. Families are often involved in providing this support and care, directly or indirectly.
As an older person ages, they will become frailer and underlying conditions may worsen and they will enter the last phase of their life. Understanding how things will change as the older person moves towards death and by talking about what type of care will be needed is often helpful for both the person and the family.
These pages provide information on palliative care and end of life care and on services and resources that can help the person and their families. It features new medications, medical practice, models of care, advice on cultural and other considerations, symptoms and treatment decisions, risk analysis, ways to support people and their families and public and consumer experience.
End of Life Health
- Coping with a Terminal Illness
- End of Life Issues
- Grief before Death
- Organ and Tissue donation
- Palliative Care
- Start Talking about your illness
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.
22 November 2018
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.
We, the families, are Deeply Grateful for this website. Something that most of us were not aware of. Many thanks.
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Your loved one’s needs:
Thinking about the needs of our loved ones in Palliative Care.
Kuhl's research confirmed what he had seen among thousands of dying patients in his clinical practice: that the most important thing to them was "connection" -- with their true selves, with their children and other loved ones, and with a spiritual something bigger than themselves.
Care providers
People who may provide care at the end of life include:
- doctors, including general practitioners, palliative care specialists and other specialist doctors
- nurses, including general and specialised nurses in the community, hospitals, palliative care units, residential aged care facilities and hospices
- allied health professionals, including social workers, physiotherapists, occupational therapists, psychologists, pharmacists, dietitians, speech pathologists and leisure therapists
- family members and informal carers
- support workers, such as assistants in nursing, personal care attendants and diversional therapists
- pastoral carers/chaplains from different religious, spiritual and cultural backgrounds
- volunteers
Palliative care
Some people may receive specialist palliative care, which is specialised health care to support people with a terminal condition who are experiencing severe or complex symptoms.
Hospice care
Hospice is appropriate for patients with a life limiting illness and usually with a life expectancy of 6 months or less. Of course, no one can predict the exact course of a terminal illness and there are patients who are in hospice longer than 6 months, unfortunately because of fear, lack of understanding and lack of communication, most people have hospice services only a very short period of time, sometimes days. This denies the patient and loved ones the full services that hospice can offer. I suggest you contact a local hospice and have someone come in and have an honest discussion with your loved one and you so you can make an informed decision.
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.
How is hospice care delivered?
- Typically, a family member serves as the primary caregiver and, when appropriate, helps make decisions for the terminally ill individual.
- Members of the hospice staff make regular visits to assess the patient and provide additional care or other services.
- Hospice staff is on-call 24 hours a day, seven days a week.
- The hospice team develops a care plan that meets each patient’s individual needs for pain management and symptom control.
- This interdisciplinary team usually consists of:
- the patient’s personal physician,
- hospice physician
- or medical director,
- nurses,
- hospice aides,
- social workers,
- bereavement counselors,
- clergy or other spiritual counselors,
- trained volunteers, and
- speech,
- physical, and
- occupational therapists, as needed.
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.
Costs of Living at Hopewell:
As a Licensed Private Health Facility, Hopewell Hospice is able to bulk bill the Funds of those with Private Health Insurance. This covers all costs apart for an administration fees at entry. A contract with the Department of Veterans Affairs covers all costs for DVA pensioners. For those without private health insurance, accommodation fees can be negotiated.
Services:
- A modern eight-bed free-standing hospice residence in a serene garden setting.
- Highly skilled, compassionate nursing team providing holistic 24-hour palliative care.
- Monitored pain control and holistic management of symptoms.
- Emotional, spiritual and social support for residents, families and friends.
- Grief and bereavement counselling, and ongoing support for family members.
- Pastoral care for various faith traditions.
- Creative living well programs, such as stress reduction, meditation, music and art.
to learn more about Hospice care:
http://www.kindredhealthcare.com/what-we-do/patient-and-caregiver/blog/2016/10/20/hospice-care--what-you-may-not-know/
People who approach the end of life are often less afraid of death than they are of what may come during the dying process. Hospice care addressees this issue by offering a personalized plan of care based on each individual’s progress and needs.
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Grief is a normal response that follows a significant change or loss which may affect someone's life. Grief is a process of coming to terms with what has changed in life. There is no right or wrong way to do it, and no timeline on how long you will grieve for.
You may be able to deal with your grief with the help of family and friends, or you may need some extra support.
Signs of grief
Some people are open and expressive with their grief, for example crying, and wanting to talk, while others are more private, and may be reluctant to talk.
A grieving person may experience intense thoughts and feelings such as sadness, anger, fear, anxiety, disbelief, panic, relief, shame and nostalgia.
Grief can include both physical and emotional distress. Signs of distress can include:
- crying and sadness (or a reluctance to cry)
- feeling numb
- difficulty sleeping and having nightmares
- constantly feeling tired and depressed
- changes to eating habits
- difficulty concentrating and making decisions
- feeling tense, sick and having difficulty breathing
- losing interest in family, friends and hobbies
- disorientation and confusion.
Support services
There are many organisations that can help you understand and cope with grief and loss. Get help with grief counselling and support.
Specialist palliative care services can help with accessing a social worker or psychologist. Your general practitioner will also be able to refer you to an appropriate service.
PalAssist
PalAssist is a free Queensland 24-hour telephone and online service specifically for palliative care patients, carers, family and friends seeking practical information and emotional support.
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