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Carers, family and friends

Palliative caring
This practical reference booklet by Palliative Care WA aims to help family and friends who are involved in caring for someone with a life-limiting illness or condition. It does not aim to present detailed medical or nursing information but provides sources where further information can be obtained if required. While there is no instruction manual to guide people through this difficult and emotional process, being informed and having access to clear information does help.

How can I support my friend or family member?
Finding out that someone you know – a relative, acquaintance, workmate, or friend – is going to die comes as a shock. Their world has suddenly changed. Anxiety, sadness and even anger at the news are all quite common reactions. Many people, though, choose to see themselves as living with a disease or condition, rather than dying from it. This brochure explains that the person will be receiving care that aims to help them live as well as possible and to stay in control. This involves looking after all their needs with physical, emotional, social, cultural and spiritual support. Importantly, it also involves caring for the person’s family and carers.

How to care
The CareSearch website’s ‘How to care’ section provides information for carers on the practical things that can help daily life.

Carers WA
Carers WA supports the palliative care sector as a member of PCWA. Carers WA is a non-profit, community-based organisation and registered charity dedicated to improving the lives of the estimated 320,000 family carers living in Western Australia. Services include counselling and an advisory line.

Alzheimer’s WA
Alzheimer’s WA supports the palliative care sector as member of PCWA. Dementia is a terminal illness which requires a palliative approach to support and care. Alzheimer’s WA has a wide range of specialised support services, including respite, counselling, education and social programs for people living with dementia and their carers and families.

What to expect when someone is 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 Palliative Care Australia resource will help you to understand, anticipate and respond to some of the signs you may notice.

At the end
CareSearch offers extensive information about dying, including changes that occur at the time of death, dying at home and preparing for the end.

Symptom management

Learn more about pain and pain management
Pain is unpleasant sensation, suffering or distress of the body or mind. This Palliative Care Australia resource explains that pain can wear you down, make it hard for you to be active and make you feel tired and tense. Pain often accompanies cancer and other progressive diseases and it can affect the psychological, emotional and spiritual aspects of your life.

Facts about morphine and other opiods
Opioid medicines are pain relievers. They include medicines such as codeine, morphine and oxycodone. This Palliative Care Australia resource will help you, your family and your carers learn about using morphine and other opioid medicines for relieving pain. Knowing the facts will help you manage your pain and get on with life.

Massage therapy in palliative care
Massage therapy is a systematic form of touch that is either applied directly to the skin or through clothing, generally focusing on soft tissue. Promoting soft tissue changes is important for a person’s physical and emotional symptom management. Massage therapy can be used independently or in conjunction with other treatments and is a complementary therapy that is not a replacement for conventional medicine.

Advance care planning

Advance care planning
The process of advance care planning helps you to plan your medical care in advance, should you become too unwell to make decisions for yourself. The process varies from state to state, so PCWA explains how it works in WA.

Dying to Talk Discussion Starter
You never know what the future holds. It is never too early to plan ahead. Talking now can help your family and friends in the future, and can make sure you get the kind of care that you want. The online Dying to Talk Discussion Starter will guide you through that discussion. It will help you prepare, so that you know what you want to say and it will provide you with tips about how to start talking. An Aboriginal and Torres Strait Islander Discussion Starter is available online too.

ELDAC (End of Life Directions for Aged Care)
The ELDAC project aims to improve the care of older Australians. Health professionals and aged care workers can access information, guidance, and resources to support palliative care and advance care planning for older people and their families.

My Values
The My Values website helps you to identify, consider and communicate your wishes about the medical treatment you would want in the later stages of life.

Living with illness
CareSearch provides extensive information on living with illness, including emotional challenges, planning for the future, symptoms and complementary therapies.

Compassionate Communities

Compassionate Communities Communique
This booklet explains what a Compassionate Community is and how it can help people at the end of life. It showcases Australian developments and puts the movement into context internationally.

Compassionate Communities National Forum
The Compassionate Communities Hub provides insights from eight communities around Australia – including Bunbury – which are working to establish Compassionate Communities through the Compassionate Communities National Forum.

Compassionate Communities Network
This informal group is working to promote the principles of public health palliative care. The network is open to everyone who is interested in social approaches to end-of-life support.

Each Community is Prepared to Help
This 47-page brochure from the UK provides extensive advice and practical suggestions for organisations keen to stimulate and extend partnerships with communities. It provides guidance on ambition six of the Ambitions for Palliative and End of Life Care, which is ‘each community is prepared to help’. The brochure’s recommendations are all suitable for local interpretation.

Health Connections MENDIP
Look for inspiration to support your local Compassionate Community through this English organisation which trains people to become community connectors. They put local people in touch with the support they need to improve their health and wellbeing and also provide one-to-one support. It also maintains a directory of support services and runs talking cafes.

Healthy End of Life Program (HELP)
This initiative aims to incorporate end of life into local government planning, policy and practice to support residents as they near the end of their lives. HELP is designed to shift the dominant culture of a local community from one where members instinctively decline help from personal and community networks to one that ‘asks for and accepts help’. The program, generated by the La Trobe University Palliative Care Unit, provides a public health framework and resources to guide a local community in developing a collaborative culture for end of life care.

Public Health Approaches to End of Life Care
This UK toolkit provides an outline of the origins, principles and methods of Compassionate Communities, and provides examples to show how theory and methods apply in practice.

Supporting Communities Around End of Life Project
This Victorian project aims to:

• build the organisational capacity of councils around end-of-life
• build community capacity in end-of-life support through local government structures and networks
• improve community understanding of healthier approaches to death, dying and bereavement, and
• evaluate the effectiveness of this approach.

Ten questions to ensure good end of life care in your area
This document aims to support people with an interest in end-of-life care to influence others in their community by challenging them holding them to account. While it was produced for use in an English context, many issues are relevant across WA.

Weavers
Weavers are experienced and trained former carers who volunteer to support families and informal carers. The initiative, from the Australian Centre for Social Innovation, has achieved positive outcomes for carers, people being cared for, and volunteers.

Grief

Understanding grief
Grief is how we respond when we experience loss. This Palliative Care Australia resource highlights that grief is a normal, natural and inevitable response to loss and it can affect every part of our lives.

Bereavement, grief and loss
CareSearch provides extensive information on grief, sadness, the loss of a child and remembering.

Paediatric palliative care

Paediatric palliative care
This website explains that paediatric palliative care enables babies, children or young adults to live in an environment where curative treatment can be part of their life, but not their entire focus. Paediatric palliative care aims to provide the best quality of life through a holistic approach which supports the physical, emotional, social and spiritual aspects of the child and their family.

Residential aged care

10 questions to ask about palliative care in residential aged care
Nurses, doctors and experts with experience in aged care have compiled this brochure to support people searching for a high quality residential aged care facility. It provides 10 questions to help determine whether the facility can manage changing needs in the final stage of life.

Patient advocacy

Advocare
Advocare supports the palliative care sector as a member of PCWA. The independent, community based, not-for-profit organisation that supports and protects the rights of older people and people with disabilities. Read more

Health Consumers Council (WA)
The Health Consumers Council (WA) supports the palliative care sector as a member of PCWA. It works to help people navigate the health system, understand their healthcare rights and offers an advocacy service. Read more

Multilingual brochures and videos

About palliative care
These brochures explain palliative care in 17 languages, answering:

·         What is palliative care?
·         Who provides palliative care?
·         Where can I receive care?
·         Will I have to pay?
·         What if I need to speak another language?
·         What about my family?
·         Where can I get more information?

Select a brochure in the most relevant language, courtesy of Palliative Care Victoria.

At the end
This CareSearch video explains the importance of having information about death and dying in order to make informed choices. The video is also available in Arabic, Cantonese, Greek, Italian and Mandarin.

Bereavement, grief and loss
This CareSearch video explains that people grieve differently, and there is no ‘right way’ to grieve. The video is also available in Arabic, Cantonese, Greek, Italian and Mandarin.

How to care
This CareSearch video explains the challenges associated with caring and importance of caring for carers and providing them respite. The video is also available in Arabic, Cantonese, Greek, Italian and Mandarin.

Living with illness
This CareSearch video outlines things to consider when you have a serious illness. The video is also available in Arabic, Cantonese, Greek, Italian and Mandarin.