Did you know that a few hours of planning could spare the people close to you enormous, avoidable pain, confusion, and heartache? That end of life planning isn’t about death at all? It’s about living on your own terms, right up until the very end and then being cared for after death in your preferred manner.
Most of us are getting on with life, without a diagnosis, without an immediate health scare, without any reason to stop and think about what we want when things change. And then we start hearing the terms: advance care planning, health care directives, power of attorney. We may nod along as though we understand, even when we’re not entirely sure what they mean.
That gap between hearing these words and truly knowing what they mean? That’s where end of life doulas comes in.
Why knowing your options matter
We cannot make meaningful choices when we don’t know our options. Without that knowledge, we simply get shuffled along to the beat of someone else’s drum, someone else’s agenda, beliefs, or practices. Our choices can only reflect our values when we actually know what choices are available to us.
This is true whether you are:
- ageing, or caring for someone who is
- navigating your own diagnosis, or supporting someone through theirs
- managing the needs of your own family and elderly parents, and feeling stretched between the two
- simply someone who wants to be prepared
Whatever your situation, there is a whole world of options available to you. Knowing them is empowering, not just for you, but for everyone you care about and for.
The documents that matter
There are two broad categories to think about: documents that matter while you are alive, and documents that matter after you die.
While you are living, the three kinds of documents of primary importance are:
- An Advance Care Directive, Advance Care Plan, or Living Will. These terms are often used interchangeably, but they have important differences. Understanding what each one does and which one applies in your situation is the starting point.
- Legal documents that allow someone to advocate for you. This covers Enduring Power of Attorney (both administrative and medical), Legal Guardianship, and the role of a Substitute Decision Maker. These ensure that if you can no longer speak for yourself, someone you trust, someone you have chosen, can speak for you. And crucially, they can do so in a way that reflects your wishes.
- End of life care plans and considerations. These capture how you want to be cared for, where you want to be, and what matters most to you if you become seriously ill.
After death, there is a separate set of things to consider, including funeral plans, body disposition options, your Last Will and Testament, an Emotional Will, estate and digital information, and legacy documents for the people closest to you.
A few things worth knowing right now
Here are some things that often surprise people when they first start looking into end of life planning.
The rules are different depending on where you live. In Australia, end of life law varies between states and territories. Voluntary assisted dying legislation, legal capacity laws, organ donation processes, and Advance Care Plan implementation all differ depending on where you are.
In Aotearoa New Zealand, the legal landscape is more nationally consistent but has its own distinct framework. Voluntary assisted dying became legal there in November 2021 under the End of Life Choice Act, following a public referendum.
The documents you need and the legal weight they carry will depend on your country and, in Australia’s case, your state or territory.
Whilst no one ‘owns’ your body after you die, in both Australia and New Zealand, the law generally gives one person the right and responsibility to make decisions about the care and disposal of the body. Where there is a valid will, this is usually the executor. If there is no will, or no executor able or willing to act, that responsibility may fall to the person most likely to administer the estate, often a close family member or next of kin. This is a significant responsibility, and it may not fall to the person families assume.
One of our senior doulas witnessed a situation that highlights the importance of reviewing your will and discussing your wishes with your executor.
An elderly woman had appointed a male relative as executor many years earlier. They lived far apart and had little contact. Later, the woman developed dementia and lost the capacity to make changes to her will.
Throughout her illness, she clearly expressed to her children that she wished to be buried in the family plot beside her grandmother. However, after her death, the executor chose cremation because it was less expensive, despite the family’s efforts to honour her stated wishes.
The outcome was deeply distressing for her children and may have been avoidable. Recording funeral wishes and maintaining communication with your chosen executor can help ensure your preferences are understood and respected.
Your will is often not the right place for your funeral wishes. Many people include burial or cremation preferences in their will, but wills may not be found or read until after the funeral has already taken place. If you have strong wishes about what happens to your body, they need to be documented and communicated separately.
Dying without a will may cause some real problems. Even if you believe you have nothing of value, dying intestate (without a will) can create legal complications and unnecessary distress for the people you leave behind.
Dying without a will can mean the family has to apply to the court for someone to be formally appointed to manage the estate. That can cost money, take time and add stress, even when the estate is modest.
In Aotearoa New Zealand, your Advance Care Plan carries legal weight. The information you record has legal standing, meaning your healthcare team is required to take your stated wishes into account when planning your care. Templates are available on Tō tātou Reo advance care planning.
How an end of life doula can help
If all of this feels a little overwhelming, you are not alone. Knowing that these documents exist is one thing. Sitting down to complete them, having the conversations with family members, and making decisions that require you to confront your own mortality is another thing entirely. This is where an end of life doula can make an enormous difference.
An end of life doula is a trained, non-medical companion who supports individuals and those close to them through the process of planning for, and navigating, the end of life. Just as a birth doula supports a family through the arrival of a new life, an end of life doula supports people through the leaving of one.
What does that look like in practice? A doula can:
- Help you understand your options by cutting through the jargon of advance care directives, powers of attorney, and everything in between, so you can make decisions that genuinely reflect your values
- Support the conversations that many families find difficult to start on their own, creating a safe and guided space to talk about wishes, fears, and hopes
- Assist with documentation, helping you work through the paperwork in a way that feels manageable rather than daunting
- Provide emotional support for both the person who is ill and the people who love them, at every stage of the journey
- Help with after-death care planning, including funeral wishes, body disposition options, and legacy projects like ethical wills or memory documents
- Be a steady, informed presence when the medical system feels impersonal or hard to navigate
An end of life doula does not replace your doctor, your lawyer, or your funeral director. What they offer is something different: time, presence, and expertise in helping people live and die in a way that feels true to who they are.
If you are interested in training as an end of life doula yourself, whether to support others professionally or simply to be better equipped to help the people in your own life, Preparing the Way offers a Foundation Workshop designed for exactly that purpose.
What now?
If reading this has stirred something in you, a sense that you should probably get some of this sorted, that is exactly the right response. The good news is that you do not have to figure it all out on your own.
At Preparing the Way, we offer several ways to support you:
- Foundation Workshop is for anyone seeking a clear, practical understanding of end of life care
- Personal doula support is available through Preparing the Way’s network of practitioners
Planning is, as American time management consultant Alan Lakein once put it, bringing the future into the present so that you can do something about it now. His 1973 book How to Get Control of Your Time and Your Life sold over three million copies — not a bad person to quote when it comes to taking action before it’s too late. End of life planning is one of the most loving things you can do, for yourself and for the people who will one day accompany you through it.