Advance care planning (ACP) is the process of thinking about, talking about and planning for future health care and end-of-life care.
Key points about advance care planning
- Planning your health care helps you prepare for what the future might hold. It also helps your family/whānau and your healthcare team know what health care you want or don't want.
- This is especially helpful if you can no longer speak for yourself, eg, in an advanced stage of dementia or when something unexpected happens.
- An advance care plan is a written record that includes your preferences for your future health care.
- Advance care planning can be done when you are perfectly healthy and want to prepare for the worst-case scenario or because you have a long-term condition or life-threatening illness.
- The 5 steps involved in advance care planning include thinking about, talking about, planning for, sharing and reviewing.
What is advance care planning and why is it important?
Advance care planning is an ongoing process of thinking about your future health care and talking about this with your family/whānau and your healthcare team. This includes planning your end-of-life care.
Planning your future health care helps you understand what the future might hold. It also helps your family/whānau and your healthcare team know what health care you would or would not want, which is especially helpful when you can no longer speak for yourself, eg, in advanced stage of dementia or when a sudden unexpected illness happens.
While 60% of people say that making sure their family is not burdened by tough decisions is “extremely important”, 56% have not communicated their end-of-life wishes. Source: Survey of Californians by the California HealthCare Foundation, 2012
Advance care planning is a voluntary process, the pace and content of the conversations is determined by you. Your healthcare team will make sure you have enough information in a way you can understand it, so that you can more effectively take part in medical decision-making processes now and in the future.
(Health Quality & Safety Commission, NZ, 2018)
What is an advance care plan?
An advance care plan is a written record that includes all your wishes, preferences, values and goals relevant to all your current and future medical care, that has been written after discussion with your family/whānau and your healthcare team. The plan can be very helpful especially if something unexpected suddenly happens or when you become very unwell, as you may not be able to express your wishes and thoughts at the time.
An advance care plan can include things like:
- who your family members/whānau or pets are
- your values
- the ways you would like those caring for you to look after you
- your spiritual and emotional needs
- the type of funeral you would like
- whether you wish to donate organs
- where your important papers and documents are
- whether you have an enduring power of attorney (EPOA) or advance directive – enduring power or attorney is someone you appoint legally to make decision on your behalf about your personal and financial matters when you can no longer speak for yourself. Read more about enduring power of attorney.
Your advance care plan should be written in the knowledge that it could be considered a legal document. It will be referred to in future if you can't speak for yourself. Your advance care plan also needs to be regularly reviewed and updated as and when situations change. This may be done every year around your birthday or some other date that will remind you to do it.
Who is advance care planning for?
Advance care planning is for everyone. You may be perfectly healthy and would like to plan and prepare for the worst-case scenario, eg, when a sudden unexpected illness happen. You may want to plan because you have a life-threatening illness or a long-term condition.
What is involved in advance care planning?
The 5 steps to start advance care planning are:
The first step in advance care planning is thinking about what matters to you and what you would like for your future health care. This can include things like:
- your values and beliefs
- treatments or care you would want if certain things happen
- medical problems you might have in the future
- how you would want to be involved in your treatment decisions
- your wish and thoughts about donating organs.
Read more about thinking about your future health care.
Once you have thought through some of the issues, you will have a series of conversations with both your family/whānau and your healthcare team to discuss your future health care. Make sure you have the time and opportunity to ask your questions and to express your preferences for end-of-life care. These conversations are important even if you never write down an actual plan.
Read more about talking about your future health care.
It's a good idea to write down your wishes when you have thought through things and discussed them with your family/whānau and your healthcare team. This can help others be clear what you would and would not want in certain situations. They can also refer to your plan if you can’t speak your yourself. Having your wishes put down in writing can save families/whānau and healthcare teams a lot of worry and concern. It can be seen as a gift to your loved ones if and when they have to make a decision on your behalf.
If you have a plan written down, make sure you share it with your family/whānau and your healthcare team and anyone else you would like to share it with. It is important your whānau and other loved ones know you have a plan and where the plan is kept. Or you can give them a copy.
My advance care plan and guide teaches and guides you in what you need to think about and how to write an advance care plan. You can do this with your family/whanau and healthcare team or do it yourself and then share it with them. There is also an electronic version of my advance care plan that you can complete online and email your family/whānau.
It's important to review your plan regularly to make sure nothing has changed for you. You can also add things to your plan as often as you like and change your decisions at any time. Every time you make a change, let your healthcare team and anyone who has a copy of your advance care plan know.
Advance care planning Health Quality & Safety Commission, NZ
Advanced care planning in 5 steps Health Quality & Safety Commission, NZ
Letting go – what should medicine do when it can't save your life? Dr Atul Gawande, The New Yorker, 2 August, 2010
Advance care planning Age Concern, NZ