Your values, beliefs and preferences for your end-of-life care are unique and important. You have the right to make decisions about your care and quality care will relieve your pain and suffering, while empowering you, your family, friends and carers.
If you have preferences about how and where you want to die, it is important that you tell your carers, family, friends and healthcare professionals. Documenting and communicating your preferences can make it easier for your family and friends to follow your instructions and respect your wishes.
Thinking about where you want to die
For some people, where they die is very important. You may be at home and wish to stay there. You may choose to move into a hospice or hospital to receive end-of-life care. If you have been receiving care in a hospital or hospice, you may want to return home.
End-of-life care in a day centre or hospital
Palliative care units in hospices or hospitals are designed to be as ‘homely’ as possible. There are usually no limits on visiting hours and your family and friends are encouraged to spend time with you and help with your care.
End-of-life care at home
Talk with your doctor to understand how your symptoms and conditions will progress and learn about the types of medication and treatment that are available to you if you decide to have end-of-life care at home.
Understanding when health professionals will visit and the changing demands on your carers will make it easier for you to put solid plans into place.
Care at home relies heavily on the help of your carer. You will probably have support from visiting healthcare professionals, but it is your carer who needs to understand and be able to deal with your care needs as they change. This can be a challenging task. It is important for you to recognise that your carer may find it hard to continue to support you as circumstances change. It’s important to work as a team and communicate regularly, to see how each of you is managing the situation.
Putting together another plan in case you change your mind about your end-of-life home care can be a good idea. If you do change your mind and need to move at a later stage, it will be easier if you have planned this already.
Thinking about how you want to die
There are many things that you may want to think about when it comes to the people and things you would like to have around you as you die.
For example, you may have strong feelings about the music that plays, the smells in the room, the prayers that are recited – cultural, familial and religious influences may be part of the picture that is your own unique personal preference.
Communicating your end-of-life preferences
Knowing your preferences for your end-of-life care is one thing, but telling the people that matter about them is another. Write down and tell your family, carers and health professionals about your preferences so that they can put them into place when the time comes.
Writing down your preferences ahead of time can also be a good way to manage conversations about your care. You may also like to consider making an advance care directive. In an advance care directive you can record general statements about your values and preferences to guide your future medical care. Having an advance care directive will make it easier for your family or carers to carry out your wishes at the right time.
Changing your plans
Just as you have the right to make decisions about your care, you also have the right to change your mind at any time.
A good way to manage your changing thoughts is to communicate regularly with your carer, family or medical power of attorney. By checking in regularly with these people about your care, you can make sure that they follow up on any changes of mind you may have.
Where to get help
- Your carer
- Your doctor
- Your palliative care provider
- Palliative Care Victoria, call (03) 9662 9644
This page has been produced in consultation with and approved by:
Better Health Channel - (need new cp)
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