What is a living will?
(AND WHY IT’S A GOOD IDEA FOR YOU AND YOUR LOVED ONES TO HAVE ONE)
Does anyone in your family have a living will? Most would say not. With many once-fatal diseases now effectively controlled and death often managed in hospital wards, end of life can feel distant from our reality. This makes having a conversation about planning for terminal illness or death hard to think about. As difficult as the idea might be, planning in advance for what you want to happen if you are dead or dying will make a world of difference to everyone’s stress levels when the time comes to put those plans into action. Understanding a partner or parent’s wishes before a health crisis means the family won’t be forced to make difficult choices in the middle of an emergency.
A living will allows a person to legally document their wishes for end-of-life and helps the family to understand and respect those choices. So, how do you start?
This short guide can help you think about how to tackle making end-of-life plans with your family.
The language of living wills
There are a few terms used around end-of-life planning that are useful to know:
Advanced care planning. This more formal wording simply describes a plan that sets out a person’s wishes should they become ill (perhaps terminally so) and unable to speak for themselves.
Living wills or advance directive. This is a signed statement that sets out the decisions of a person about what they want to happen. It’s a formal, legal expression of their wishes.
Power of Attorney (POA). This is a legal document that allows a designated person (usually a family member) to legally make health and/or financial decisions for a person if they are physically or mentally unable to make them. A living will expresses end-of-life wishes and typically works together with a Medical Power of Attorney. Sometimes, they’re combined into one document.
How to break the ice
The following tips are suggestions for approaching the subject of living wills, not a ‘must-do’ list. It’s important to let your particular family dynamic guide you at the time – do what feels right for you and yours.
Check in with yourself first. How are you thinking and feeling about this? It’s easy to think about living wills as a sign of impending death. However, in reality, these documents are about respecting someone’s wishes and about helping the family understand these wishes. Think about it as respecting a life, not planning a death.
Use an example. If there’s someone in your life, or in the news, who recently suffered a serious injury or illness you can use this to broach the subject. “I’ve been thinking about how Phil’s family struggled with what to do after his accident. I don’t want us to go through that and was thinking it might be good to have living wills. Have you ever thought of making one?”
Time it right. One of the best times to raise this subject is in times of transition in life. Downsizing a home, moving into a new living environment, or updating a will are all moments that can offer an opportunity to bring advance planning into the conversation.
TIP: If your initial approach doesn’t lead to a real conversation, or a positive response, don’t give up. You can revisit it later, and maybe in a different way. Studies have shown that people can feel relieved after sharing their end-of-life wishes. It gives a person a sense of control and the space to realise that they may have preferences that others aren’t aware of.
Remember that you can set the tone
If you’re the one starting the conversation, others will take cues from you on how to feel. If you are reluctant or emotional, they will respond to that, and a desire to spare your feelings can end up with them not talking or sharing all of their thoughts. Taking a gentle but practical approach is ideal. There can even be humour if that’s something that is your family’s style. Open, respectful curiosity about their thinking and views is a great attitude to bring to any conversation.
What should you talk about?
You could start with the easier ideas, like what might happen if they needed care? What would be important for someone caring for them to know? This could include:
Day-to-day things like the food the like/don’t like to eat or drink.
Any values, beliefs or ideas that might affect the way they’d want to be looked after.
Their wishes for any medical treatment, for example there may be some treatments or medicines they don’t want to be given.
What’s important to them in the last days and hours of life, for example where they’d want to be, or who they’d like to be with them.
This can help to set up a deeper conversation so you can talk through questions around what to do if they get really ill, rather than jump straight to the idea of end-of-life. This bigger conversation might include asking what they’d like to happen if:
They needed to be resuscitated – under what conditions would they want to receive resuscitation attempts, and under what conditions would they not? Some of the things for them to consider here are: What if you have minimal brain activity? What if you’re in constant pain?
They needed help with breathing – how do they feel about mechanical ventilation?
They needed feeding tubes, either by IV or through their stomach?
Their organs started to shut down – they needed dialysis of their kidneys, for example?
They had a serious infection that required huge doses of antibiotics or antiviral medications?
Once the important healthcare decisions have been made, it’s a more natural progression to talk about end-of-life care – how they want to be cared for when it is clear they have a short amount of time to live (sometimes referred to as palliative care or comfort care). Things to talk about here might be where they’d like to spend that time – are they open to hospice, would they prefer to be at home, or elsewhere?
It’s also worth chatting about how they feel about managing their pain through drugs, what kinds of treatments or tests they would be open to and which ones they’d rather avoid.
Often, the hardest part of these conversations is around what they’d like to happen once they’ve died. All too often, families have to make these decisions under huge emotional pressure and without a clear view of what their loved one would have wanted. Understanding their wishes now will mean everyone can feel comfortable that they’re doing the right thing when they can’t ask.
What to consider after death:
Organ and tissue donations for transplants
Donating your body for medical studies
The choice of burial or cremation – and if they want cremation, what would they like done with their ashes?
What sort of funeral would they like? Formal or informal? Is there any specific music or written words they’d love to have?
Put it in writing
Having the conversation is the important first step. The next is to record those wishes in writing. Even if the entire family is in on the talk, relying on memory is too risky—each person will remember a conversation a little differently. The only way to be sure is to write things down and make it legal. Family lawyers are a great place to start, but there are also plenty of reputable sites online that can give you an easy-to-use template for the documents you’ll want to create (Power of Attorney and Living Will) If you’re using a template, you will need to make sure you get it correctly notarised or witnessed to create a legally binding document.
For anything that doesn’t need to be legally binding, note it down and give copies to the person in question and share it with other family members too, so there are no surprises down the track.
TIP: You could also ask your family doctor or another relevant professional to sign a statement saying that in their opinion the person making the living will has the mental capacity to make the decisions they have made. The person themselves may also want to put in writing that they were not under any pressure to make the advance decision at the time.
