End of life care
It is normal to not want to talk about dying and death. It can be a very difficult conversation to have and to initiate. You may not know how to start the conversation, are worried you might upset your family and friends, or not want to think about it.
However, there are very good reasons for everyone to talk about death, and to start talking early. Reasons include:
- helping empower you to take control of what your end-of-life care will be like
- ensuring others know about your final wishes in advance
- assists loved ones who may need to make decisions on your behalf
The information below provides an overview of things to consider relating to end-of-life care. This information includes planning, having conversations about your wishes, and what supports are available.
What would you like your end-of-life care to look like?
Facing this time can be confronting. It is challenging for those who are approaching death and for their loved ones and networks who support them. By considering how you would like this stage of life to happen can help reduce confusion and uncertainty. Things to consider include:
- If you need palliative care, where would you like to have it – home, hospital, or in a hospice?
- Who do you want to provide the care?
- What kinds of treatment do you want and not want?
- What do you want for your end-of-life care?
- If you can’t make a decision about your care, who do you want to make that decision for you?
- Who do you want with you when you die?
- How do you want to be celebrated?
- Would you like to be buried or cremated?
These can be difficult questions to consider but may help you reflect on what’s important to you and how you’d like things to work. Some people prefer to consider these independently, and others prefer to talk to a loved one, a social worker or a counsellor.
Social workers and health professionals are there to support you, to assist and advocate for what you would like your end of life to look like, and help with some of the terminology and terms specific to this process.
There are a number of resources available to help you think about what you would like your end-of-life care to look like:
What is palliative care?
Palliative care is not just for people nearing the end of their lives. It is also for people who have a life-limiting or chronic ongoing illness. People can access palliative care at different stages of their CF, as they move through periods of wellness and illness. It is a fluid process.
Palliative care aims to help the individual, their family, friends and carers. It focuses on managing symptoms and providing comfort and assistance and ranges from practical help with daily tasks to help with emotional and mental well-being. This may include:
- pain relief and managing other symptoms
- finding equipment needed to help with your care at home
- links and referrals to services such as home help, financial support and respite care
- supporting you, and your family and friends talk about sensitive issues
- counselling and grief support
Watch for more information on palliative care
Your CF clinic or transplant team, GP or other health providers can refer you to palliative care. Like your CF clinic and transplant teams, palliative care teams are multidisciplinary. They include GP, nurses, allied health professionals and social workers.
Find out more at Palliative Care Australia and the Australian Health Department’s: About palliative care.
What is end-of-life care?
End-of-life care is part of palliative care, generally occurring during the last few months and weeks of a person’s life. It includes the health care a person receives during this time, and helps to minimise distress and grief associated with dying.
Planning and discussing your wishes
It is important to feel like you have control over your end of life care, which is why it is suggested you start the conversation early and discuss your wishes with your support network. This process is not easy or one that is covered off quickly. Conversations may arise when you start thinking about this process and as your health or situation changes.
By talking to your support network about how you want this to happen, it helps bring clarity to what you would like especially when decision making is required by others during times of high emotional distress. In addition, your clinic team or a health care professional can provide information on the different types of services and options available to you to help with your planning and decision making.
Knowing how to start the conversation can be the hardest part. Below are several resources that can help get you started:
Financial considerations
Financial security is an important part of your end-of-life care. Depending on your circumstances you may be able to:
- access financial support for your care and health expenses through Centrelink, such as the Disability Support Pension
- access financial support for carers
- get your superannuation released early
- access total and permanent disability insurance or life insurance through your superannuation
- access life insurance or income protection – chat with your insurance company
- access local supports and services through palliative care and local council services – speak with your clinic or palliative care team
Taking control: documenting your plans
Once you have decided on how you would like your end-of-life care to be, you need to document your plans. Having your wishes documented helps ensure you receive the care you actually want.
There are several different ways you can document your wishes. These include:
- an Advanced Care Plan
- an Advanced Care Directive
- a will
- a power of attorney
What is Advance Care Planning?
Advance care planning starts when you begin thinking and planning your health care through conversations with your medical team and support network. Your plan will include information about your preferences and what is important to you. Your support network can then refer to your advance care plan to help them make decisions on your behalf.
Find out more at the Australian Department Health: planning your palliative care.
What is an Advance Care Directive?
You can formalise your advance care plan by creating an advance care directive. Advance care directives are recognised by common law or legislation. Health professionals and family members have to follow an advance care directive. Advanced Care Directives can include specific instructions such as withdrawing or withholding invasive treatment such as tube feeding and resuscitation by having a NFR/DNR (Not-For-Resuscitation or Do-Not-Resuscitate) order in place.
You don’t need a lawyer to create an advanced care directive, but it is important that you talk through and understand what options are available to you. Advance Care Planning Australia has forms and information to assist you.
Once you have finalised your advanced care directive, give copies to:
- your family
- your substitute decision-maker, power of attorney (the person who will make decisions about your medical treatment if you are not able to).
- your hospital and doctor
- ambulance service
- anyone else who you feel is appropriate
Once you have finalised your advanced care directive, give copies to:
- your family
- your substitute decision-maker, power of attorney (the person who will make decisions about your medical treatment if you can’t).
- your hospital and doctor
- ambulance service
- anyone else who you feel is appropriate
What is a will?
A will is a legal document that says what you want to happen to your assets when you die. It can include things like:
- your funeral plans
- how you want your money, superannuation, and assets allocated
- who will care for your children
Find out more at the Australian Government: wills and power of attorney.
What is a power of attorney?
A power of attorney gives someone else the legal right to look after your affairs on your behalf. You can have one or multiple power of attorney’s over your assets, health and finances. Examples include: You can give people different types of powers of attorney:
- Medical power of attorney: allows someone to make medical decisions for you if you can’t make the decisions yourself.
- General power of attorney: allows someone to make financial and legal decisions for you, usually for a specific period of time.
- Enduring power of attorney: allows someone to make financial and legal decisions for you, even if you are unable to make decisions yourself.
Find out more at the Australian Government: wills and power of attorney.
Reviewing your plans
Everyone should regularly review their plans to ensure they are still applicable. Where necessary, update your support network with any changes you might make. This should be done if your health declines or if your situation changes, for example, if you buy a house, have children or move interstate.
Other information and resources
What is dying like?
Everyone is different as to how much information they would like to know about dying and what they might expect. If you would like to know more about what to expect when someone is dying there are several people you can talk to and websites you can visit or chat to:
- your clinic or palliative care team
- the Better Health Channel: At the end – dying explained
- Palliative Care: the dying process
Voluntary assisted dying
Both Victoria and WA have voluntary assisted dying legislation that mean people who are at the end of life and who meet strict eligibility criteria can request access to voluntary assisted dying. For more information:
Tasmania, South Australia and Queensland all passed voluntary assisted dying legislation in 2021. Each state is now in the process of developing the processes and regulations in support of their legislation.
Voluntary assisted dying in Tasmania is expected to be in effect in October 2022. For more information, see the Tasmanian Department of Health.
In Queensland, the laws will not take effect until January 2023. For more information, see Queensland Health.
There is no current estimated date for voluntary assisted dying to be in effect in South Australia, however the state government estimate an 18 to 24-month process of implementation. See SA Health for more information.
Support and information for family and carers
There are a range of services, supports and information for people who are caring for someone who is approaching the end of their life:
- your palliative care team
- Carer Help
- Carer Gateway
- Griefline
- Australian Government: payments for carers
Support
If you or a loved one require any support during the end-of-life stage, contact your state CF organisation. Each state has different services but will be able to provide options and support. Refer to our Services page for the state listings.
