Making end-of-life decisions
We all hope to live a full and healthy life, reduce or avoid serious illness and disability, and – when the time comes – to die peacefully in our sleep. Unfortunately, this does not always happen! Many people will be sick for a number of months or years and have a gradual decline in their physical and mental functioning. A number of decisions may have to be made during this time about the risks and benefits of various interventions – such as new medications, chemotherapy, kidney dialysis, participating in research, surgery, organ donation, admission to intensive care or initiation of palliative care.
How you can help
Making these decisions for another person can be challenging and stressful. Some of the things you can do to help with this are to:
- Be fully informed about the person's condition through discussions with their doctors and other care staff
- Be prepared to advocate for the person if you feel that proposed treatments or medical interventions are not what they would have wanted or are impacting too negatively on their quality of life
- Use any written or verbal directives the person may have made as your main guide
- Use your understanding of the person's values and wishes and consult others who know the person to come up with a substituted judgement - what you believe the person would have chosen for themselves
- Weigh up all the information about the situation to decide what is in their best interest if it is not clear what they would have chosen, get help and support in making difficult decisions - maybe from family or friends, your GP, medical specialist, spiritual advisors or support groups such as those run by Dementia Australia.
Select a scenario that's similar to your situation:
- Making decisions for a loved one who is approaching the end of life can be very challenging but it will be made easier if there has been some discussion and planning in advance rather that decisions being left until the last minute.
- It is important to make decisions that reflect the values and wishes of your loved one.
- It is also important to get support for yourself when making difficult decisions – either from family and friends, healthcare staff or carer support organisations.
- The scenarios below provide information and suggestions about some of the issues you may need to make decisions about as part of end of life care.
The hospital doctor has told us that – because of mum’s advanced disease – they would not provide CPR if she had a sudden heart attack. I don’t understand why we should go along with that.
Dad is eating virtually nothing now; should the community nurse put a feeding tube into his stomach?
Bob always said he never wanted to go into a nursing home but we cannot give him the care he needs any longer. How can we make the decision to put him in a nursing home when we know it’s against his wishes?
My wife has been sent from the nursing home to the hospital for the fourth time in six months. Is this really the best thing for her?
The staff in the nursing home have assessed that Gran will benefit from morphine because she is in pain, but doesn’t this mean she will die more quickly?
We want to allow mum to die in her own home, but what will happen to her in those final days and hours?
I have been so totally focused on caring for my husband that I don’t know what I will do now that he has died.