Patients & Families

Consolation for Life’s Darkest Hours
Seven unusual and wonderful books that help children grieve and make sense of death are reviewed in this Brainpickings article. From Japanese pop-up magic, to Scandinavian storytelling, to Maurice Sendak, they encompass the messiness of mourning and the many faces and phases of grief. You can read Maria Popova’s reviews, which include wonderful illustrations, here.

End of life and palliative care topics – Better Health Channel has updated end-of-life and palliative care topics. The revised pages include the following updated topics, consistent with Victoria’s end of life and palliative care framework and include information on:
• End of life and palliative care for all communities
• Support for families and carers
• Practical care to assist families and carers
• Living with a life-limiting condition
• Planning and decisions about the end of life
New content will be added to these pages on Better Health Channel as it becomes available.

Palliative care involves living the best way possible before death, recognising that everyone’s situation and needs are different and changes can occur. Not everyone will be referred to a palliative care service. You & your family can self – refer to palliative care or  ask your doctor to make the referral.

Needing Care  provides the details on finding a palliative care service.

Palliative Care Australia has filmed several short palliative care stories CLICK  HERE to view these. On the same link is a range of useful information.

Information describing palliative care, is available in

• English
• Arabic
• Chinese – Simplified
• Chinese – Traditional
  
• Croatian – Palijativna skrb
• Greek
• Italian
• Macedonian
• Maltese
• Polish
• Turkish
• Vietnamese

Palliative Care Victoria has a range of information (look on their families & patients page)

•  Living, Dying & Grieving Well – A guide to palliative care (2014).
•  Supporting a person who needs palliative care,A guide for families and friends (Ed 2,2012)

Information for the Aboriginal & Torres Strait Islander communities:

• VACCHO – It’s the beginning brochure 2012
• Welcome to Our Journey (VACCHO, 2014) is the sharing of  end of life stories from Victorian Aboriginal community members. Please be aware that names & images of people who have died are within this booklet.
• Pop Arthur shows the importance of talking to family  (links to a website where you can view Pop Arthur)
• RPCAboriginalACP Booklet 2013  (a 20 page book on taking control of YOUR health journey)

Advance Care Planning

Is a process that involves discussing what is important to you (focussing on your values, beliefs & health); appointing someone to make medical decisions on your behalf if you are unable to do so (a Medical Power of Attorney) and writing it down. Advance Care Planning Australia has the information in many languages.

Victorian Office of the Public Advocate  has videos and information on the powers of attorney

 

RCH Advance Care Planning Thinking Ahead

Thinking ahead policy: Planning care for children with life-limiting conditions: This is a companion document for the Victorian Government policy, Advance care planning: have the conversation; A strategy for Victorian health services 2014–2018. It discusses the ethical and practical aspects of advance care planning in the paediatric setting and provides an approach to decision making.

Thinking ahead framework: Planning care for children with life-limiting conditions: This framework provides a progressive approach to advance care planning discussions, a series of suggested clinical triggers, illustrative case examples and documents for capturing discussions and decisions.

Thinking ahead discussion guide: Planning care for children with life-limiting conditions: This guide is intended to help paediatricians and other clinicians approach advance care planning by offering ways of framing the discussion and examples of phrases that can be used.

Families & Carers

If you provide any level of support and assistance to another person then you are a carer, even if you don’t think you are one. Caring for someone who is going to die is difficult and you are not expected to carry the load alone.

The  Carer Gateway is a national online and phone service (1800 422 737) that provides practical information and resources to support carers. Other ways to receive support can include:

• Respite – day programs are at Caritas Christi Hospice or Fernlea House in Emerald.                      –  in-home options are available. Uniting Lifeassist has a range of carer services
• Financial assistance – Centrelink  provides several services.  The Carers allowance process when palliative care is occurring can be time critical. The guide Process to Lodge Intent to Claim Carers Allowance or Carers Payment – April 2015  is prepared by Centrelink & Palliative Care Victoria.
• Support groups–  Carers Victoria or your local community health centre can help.
• Support from others– Don’t be afraid to ask your own friends, family, work, school, church or community networks.
• Equipment can make care safer at home. This can come from hospitals, palliative care services, community health or private hire. There may be some costs for hire or delivery. For the safety of both the carer and the person being assisted, an occupational therapy assessment is recommended.
• Volunteers specifically aware of  palliative care  issues are at the community based services of  Eastern Palliative Care & Fernlea House and Wantirna Health Palliative Care Unit.  You might be interested in The Two of Us – Stories of people with life limiting illness and palliative care volunteers (2015)

Carer Gateway Videos
The Carer Gateway has a series of videos that can be helpful for those caring for someone in the community. Two that may be of particular use are:
• Practical tips on caring
• Planning for an emergency.

CareSearch is a website with loads of information about palliative care and pages specifically written for patients and families.

Many chronic disease support organisations have information addressing palliative care and the end of life period. Often this is found by typing palliative care into their website search box.

Also seek information from your GP, palliative care service or other health professional. This way you will receive the right information for the health condition.

We acknowledge the traditional custodians of the land, the Wurundjeri people and pay 
respects to elders past and present

Make the most of your time with your doctor
The Question Builder is a web-based tool to help people prepare for a visit to the doctor. The tool enables people to build a list of questions they would like to ask their doctor, and consider questions their doctor might ask them. These questions can be printed or emailed to a phone/device for use during the appointment.

The Question Builder is designed to be used with general practitioners and specialists in Australia. It encourages people to ask questions that matter most to them, participate in the appointment and share decisions with their doctor about their own care.

The Australian Commission on Safety and Quality in Health Care have developed this tool in partnership with Healthdirect Australia. More information, including a link to the Question Builder, is available on our website.

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