Advance care planning

Key points about advance care planning

Advance care planning (ACP) is the process of thinking about, talking about and planning for future health care and end-of-life care.
Advance care planning is really important for people and their families at all times during the health care journey.
This page provides information about what ACP is, and includes care planning guides and resources to get you started.

Thinking, talking, planning, sharing and reviewing what matters to you, can better prepare you, your whānau and health care team for what the future might hold.
Talking to your whānau and health care team ahead of time is especially helpful if you can no longer speak for yourself, eg, in an advanced stage of dementia or when something unexpected happens.
Some people also find it helpful to put together ideas in advance to better participate in the decision making.
You may write down your thoughts in an advance care plan, which 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.

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.

Video: Jane Lai talks advance care planning

Social worker Jane Lai explains the value of advance care planning to the Chinese community. Produced in collaboration with Mercy Hospice, POI Project and the Health Quality & Safety Commission.

This video is in Mandarin but has English subtitles. Click the subtitles/closed captions box to turn them on.

(Health Quality & Safety Commission, NZ, 2020)

Advance care planning is an ongoing process. It involves thinking about what matters to you, thinking about your future health care(external link)(external link) and talking about this with your family/whānau and your healthcare team ahead of ahead of what might happen in the way of health care decision-making and treatment. 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. This is especially helpful when you can no longer speak for yourself, eg, in advanced stages of dementia or when a sudden unexpected illness happens.

Communicating what matters to you with whānau and your healthcare team helps not only you but your whānau as well. A Californian survey found that 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 with the person who would be making the decisions.

Case study

Brian is 82 years old and has recently been discharged from hospital after a fall resulting in a broken hip. This was Brian’s first admission to hospital and it triggered thoughts about what may lie ahead.

He starts to think about what his priorities are, and worries about the abilities he wants to preserve. He raises some of these issues with his two daughters who feel quite shocked by this conversation.

Brian had a slow recovery after his hip fracture and often experienced frustration as he struggled to get out and about again. Although his daughters were really supportive, he didn’t enjoy his dependence on them. This triggered worries about what will happen when he can no longer care for himself, and the realisation that he wants to stay at home for as long as possible. He has decided that he doesn't want to have really complicated treatments in the future – particularly if it involved an extended recovery time or a move into aged residential care. Instead, he would like his care to focus on symptom relief.

Brian had further health problems including pneumonia and a small heart attack, both which needed treatment in hospital. Brian fortunately made a good recovery each time with simple treatments.

Brian talked about his priorities and worries with the doctors and nurses when discussing possible deterioration or worsening of his condition during the admission process to hospital. Brian talked about how he wanted care that focused on symptoms, he received antibiotics for pneumonia and a coronary stent for the treatment of his heart attack. Fortunately he did not experience deterioration in hospital and through talking and sharing, his daughters became accustomed to Brian’s wishes.

An advance care plan is a written record that includes your wishes, preferences, values and goals relevant to all your current and future medical care, that has been written after discussion with your /whānau and your healthcare team.

An advance care plan(external link) can include things like:

Who your whānau members are.
Your pets and what might happen to them.
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.(external link)(external link)

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.

Brian decided to capture some of his thoughts, worries and priorities in an advance care plan which he developed with his daughters and his general practice team. Brian felt that writing these ideas down helped him think through things. He also felt that the hospital teams needed more support to talk to him about his priorities and worries as sometimes some of the junior doctors and nurses seemed nervous about discussing this. Brian understood he needed to find a better way to share his plan.

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.

Thinking about

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, beliefs, priorities, worries, what helps you through tough times, and what abilities are important to you and how much your whanau know about what is important to you.
Treatments that you would or would not want and what you want your care to focus upon.
How you would want to be involved in your treatment decisions.

Talking about

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 your care. These conversations are important even if you never write down an actual plan.

Planning for

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.

Sharing

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. Check with your family doctor as there are increasing options to store this electronically on your health record.

My advance care plan and guide(external link) 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(external link) that you can complete online and email your family/whānau.

Reviewing

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.

Brian has since reviewed his plan with his family doctor, he feels able to open up the discussion when he goes to hospital and feels more in charge of what is happening to him. Brian’s daughters, although initially sad and shocked about what their father was saying, now better understand his priorities and worries. They now feel better placed to support their father in achieving the care that he wants.