Advanced care planning
Advanced care planning (ACP) is the process of having conversations and making plans about your future healthcare and treatment. ACP lets you have your say should you become seriously ill, unable to communicate or in the context of end-of-life situations.
The goal of Advanced Care Planning is to ensure that any medical care you receive aligns with your values, wishes, and the medical outcomes you would deem acceptable. It helps to ensure your treatment is person-centred. That person is you.
Considering ACP is important from the moment you receive your cancer diagnosis.
It will allow your family, those closest to you and your medical team to know your treatment wishes in advance and help them to respect these preferences.
Advanced care planning is important for several reasons:
- Empowerment: It empowers you to have a say in your medical care. Allowing you to remain autonomous and have your dignity respected even in challenging circumstances.
- Helps support loved ones: Having a clear, Advanced Care Plan can aid your loved ones to become more accepting of the care and treatment you receive. It can also help alleviate some of the stress and uncertainty that they may face when having to make difficult medical decisions on your behalf.
- Ensures treatment alignment: ACP helps ensure that medical treatments and interventions align with your personal beliefs and preferences, helping improve satisfaction with the end-of-life care you receive by ensuring that healthcare professionals are not providing unwanted treatments.
- Promotes communication: Open conversations about end-of-life preferences can improve communication among family members and healthcare providers. It can help your wider support team get on the same page.
Key components of advanced care planning include:
- Discussion of Values and Preferences: An ACP begins with having open and honest conversations about your values, beliefs, and personal preferences about medical treatments, life-sustaining interventions, and your quality of life. This can include topics such as resuscitation (CPR), mechanical ventilation, ongoing treatment, hospice care, and more.
- Pick a Healthcare Proxy: Decide on a person (often a family member or close friend) who you would like to make medical decisions on your behalf should you become unable to do so yourself.
- Creating Advance Directives: In order for your preferences to be legally binding an Advance Directives is required. This is a legal document that specifies the types of treatment you would like to receive or avoid in relation to your cancer or any other medical condition you may have.
- Documenting Preferences: Ensure your preferences are discussed with your healthcare team and documented in your medical records. This makes sure your treatment wishes are honoured by your medical team.
- Review and Updates: As your treatment or disease progresses or goes into remission, ensure your ACP represents any changes in your preferences or values accordingly.
Any adult, regardless of age or health status, can engage in these discussions to be better prepared for the unexpected. For those with a cancer diagnosis, it can be something that you should start considering from the outset of your initial diagnosis. These conversations can be hard and take some time to work through.
If you need more support around Advanced Care Planning, you can speak to your social worker or medical team.
You can learn more about Advanced Care Planning through The Peter MacCullum Foundation.
If you need more information and guidance on how to create your Advanced Care Plan (the legislation is slightly different depending on which state you live in) visit Advanced Care Planning Australia.
"Patient Care [for metastatic patients] is collaborative and focused on improving outcomes in people with cancer. Optimal cancer care pathways ensure consistent, safe, high-quality, evidence-based care for our patients. These pathways are endorsed by Cancer Australia, all states and territories and the Cancer Council of Australia."
-Peta Brydon
Metastatic Perspectives - End-of-Life Doula
Being given a metastatic diagnosis can be overwhelming and a terminal diagnosis can really bring forth thoughts that you may never have considered before. It is rare while we are alive to have conversations about how we want to die. Fear around this life transition can lead to making these decisions really hard or sometimes too late.
It is slowly becoming more common for those who are dying to reach out for the support of an End of Life Doula. End of Life Doulas are non-medical support people who offer guidance and education for the dying, their loved ones and their families. They can help with navigating the myriad of options available for those approaching death and help make the transition a little less frightening. The main role of an End of Life Doula is to listen, provide options for families to consider, and be a calm “death comfortable” liaison point for them to ensure medical, social and emotional support stay connected.
“To ensure your end of life experience unfolds in alignment with your wishes, consideration must be given to the quality of life and what is meaningful to the person who is dying.”
Patsy Bingham - End of Life Angels
When should I contact an end-of-life doula?
Patsy Bingham is an End of Life Doula who has worked with many many patients and their families facing the end of their lives. While it often happens that people come to her when particular decisions around treatment and care are being made she says that “there is no better time than now while you’re well to really consider what is important to you.” For those who have received a metastatic diagnosis, it can be really helpful to bring someone like Patsy onto their team as early as possible. For some, endless treatment does not align with their wishes and this allows for someone to advocate and support the choice to no longer receive treatment and help you remain comfortable when the time to die comes.
What can an end of life doula support me with?
End of Life Doulas can help with the creation of Advance Care Planning and Directive documents ensuring the path to decision making around treatments (or the suspension of treatments) are clear and understood by all involved.
They work with families at home or in hospital to act as a liaison point between medical supports to ensure all those involved are kept in the loop with any changes or updates to treatments.
They can provide respite services to enable family members to take a break from time to time and rest, knowing that the person they love is being cared for by someone who understands their stage. They are people who are happy to hold space at this overwhelming time without fear or judgement.
They can also assist with living funeral and vigil planning, and provide in-home or in-hospital active death support, post death care, funeral planning support. An end of life doula can liaise with funeral directors, crematorium staff, and assist with death notices and digital memorialisation. In short, they can take the many administration tasks and decisions from your list and allow you to spend the time you have left, doing exactly what you want to do.
What do I want to do with the time I have left?
Patsy and the team at End of Life Angels work with patients with terminal diagnoses to help them find value in the life that has already been lived and to celebrate this in a meaningful way with the people they love.
“It is estimated that 70-80% of us would prefer to die at home, yet currently only 14% achieve this”
Patsy Bingham - End of Life Angels
After a metastatic diagnosis, it is normal to feel a whole range of emotions, and how and when people feel these is always different. The fear of leaving loved ones behind, of not knowing what comes after life can be very deep and dark feelings to traverse. With the support of an End of Life Doula you have someone to lean upon to make sure the time you have left is considered and you achieve anything you still wish to achieve.
At the end of life there are so many medical decisions that need to be made but often the most important things to consider are beyond the medical treatment. Choosing how and where to die and ensuring the transition is filled with as much love, compassion and understanding as possible to alleviate some of the emotional load for yourself and your family can provide so much reassurance to this big unknown time.
Death is something we will all face. For those being asked to face their mortality earlier than they would like, the most important thing Patsy explains “is to do things that make us feel that our life was worthwhile, that we will be remembered for, something we’re proud of, or that simply reminds us that we had a good life.”
No one knows what comes next, but in this moment and stage of your life, you can be supported and have your wishes heard
An end of life doula insight
How to cope with the decision making required after a metastatic diagnosis:
There is a lot to think about and depending on the support structures already in place (family, community, loved ones) it's quite understandable that this is a very intense time with many decisions to be made, so Patsy suggests trying to slow everything down a little. Focus on what jumps out first and deal with things one at a time.
Some decisions will require the input of others before they can be made so slowing the process allows us to sort the challenges into piles to be dealt with as required. Often there will be one or two things that keep us awake at night, and those are what Patsy suggests to try and consider first.
What options are available in terms of choosing how and where to die?
It is really up to the individual to make it clear what they want so that those supporting them understand what will be required, and what their role will need to be.
If someone chooses to die at home, they will require medical support to be in place, the right medical equipment appropriate to their needs (hospital bed, shower chair, commode, etc), and to make sure their support team is aware of what the dying person's wishes are.
Those who have decided they would like their treatment to cease and comfort care to commence might wish to invite family or loved ones to say goodbye in a dignified way aligned with their own wishes.
How can we normalise conversations about death with loved ones to help us manage this life transition?
Have conversations about how you want your life and death to be and do so early and often. These conversations are usually left until there is an emergency or medical incident, which leads to decisions being made under pressure. A “meaningful” death for the person is often considered last. The more comfortable we get having the conversations about death the better we will understand not only the needs of those we love, but our own too.
We need to remember that life is short and we never know when something is going to happen that might change our life situation in a heartbeat. Talking to the people you love and listening to those who love you is how our communities used to manage the normalisation of death, and it's where we need to return to again.
How to find an end of life doula
If you or someone you know has received a metastatic diagnosis and would like some support outside of your medical team an End of Life Doula could be a consideration.
There are a number of doula directories available online, including the Australian Doula College and End of Life Doula Directory
You can also do a Google search for end of life doula near me, and that should provide details for anyone locally.
Patsy Bingham an experienced and caring end of life doula kindly shared her experience of knowledge for this piece and her caring team can be found at End of life angels.
