How can I make sure that my end of life wishes will be honored?

When patients are first diagnosed with conditions that are known to be fatal, maybe not at the first visit, but early on when a patient has gotten over the initial shock of the diagnosis, it may be time to start thinking about what happens if things don't turn out optimally. Who should be the person we talk to about what we should do for you? 

Patients often put more importance on the trust they have in their loved ones who are by the bedside to help make decisions than they do in living wills which are pieces of paper where a person tries to specify everything in advance about what they would want in the event that they aren't able to speak for themselves. But you need to have the living will but part of the problem is that nobody can anticipate all the different scenarios of what could happen for them. 

It can be better to name a healthcare proxy and a back up person who you talk to about your wishes. They can make decisions on your behalf based on what they know generally about how you want to be cared for

So often we miss the opportunity to express what our wishes would be before it's too late to do so. Almost no one wants to look too closely at what their own death is going to look like. Most people don't engage in these conversations with their family early on. 

The first part is to think critically about who your advocates will be, then communicate to the person or people who will be your advocates. The people closest to us are likely to be present for us and able to advocate, but will be going through their own grief. It can be a tremendous gift to your closest family to choose someone who may be slightly less emotionally impacted by it. Someone who's truly able to execute on the wishes. We all have friends like that, where if you give them a task, they are like: I am going to make a spreadsheet and there are going to be people assigned and there will be a rotating schedule. These people are usually mothers, not to overgeneralize, but they tend to be mothers and grandmothers and aunts who have done this kind of thing to support other people. It is an act of love to offload the people closest to you from the logistics of what you want. 

It's important to make distinctions between your values, to know whether you value time being extended as long as possible, possibly at the expense of comfort, or whether you want fewer days that are more comfortable. Consider whether you value lucidity and the ability to communicate or being pain-free and anxiety-free because those are often mutually exclusive things. And we don't often think about them in that kind of way, where pulling on one lessens the other. I would also include all of the things about funeral planning and details about your end of life, and absolving everyone around you as much as possible of making those decisions.

The best way is by choosing wisely the person who will speak for you if you can't speak for yourself. Choose someone who listens to you and will respect how you see your own life and put your wishes first and be able to communicate with the other people in your life.

In Australia, there is very little in terms of legislated right to having one’s wishes honoured after death. Generally speaking, once a person ceases to live, all rights they have as a living human die with them. Before death, your Enduring Guardian is the person who will be responsible for your medical decisions if you no longer have capacity to speak for yourself and that person can be guided by your Advance Care Directive if you have completed one. They are accountable to a point where, if a person feels the Guardian is not acting in your best interest, their decisions can be called into review but ultimately, unless they are stripped of the powers you have given them, the final choice will be theirs.

After death, it is the Executor who becomes ultimately responsible. You will have an Executor if you have made a Last Will and Testament. A Will can go a good way to ensure that your wishes for your possessions are followed. Sadly, a Will is often not read until well after the body has been buried or cremated etc. and so putting your wishes for your body in your Will alone is often unhelpful. Even when you prepay a funeral before your death, the Executor has the right to change any of the details or arrangements you had prepaid.

All of this means one thing. The very best way that you can make sure your wishes are honored is with open and honest conversation. You need to be willing to talk to the people you are appointing – or considering appointing – and tell them what your wishes are. Ask them if they would be happy to carry out those wishes. Give them copies of your Advance Care Directive and deconstruct exactly what you mean and what your intention is for them. Engage with your appointed people in an open and transparent way. A level of trust is ultimately needed as potentially they could make decisions contrary to your wishes but this may be less likely if you have spent time in regular and open conversation and they are confident in their duties and have agreed to carry them out as you desire.