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.

 

 

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  • 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)(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.

Read more about thinking about your future health care.(external link)(external link)

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.

Read more about talking about your future health care.(external link)(external link)

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)(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)(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.

Video: Pusi Urale's story (English subtitles)

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Pusi Urale and her family have always talked about death and how to prepare for it. In her video, Pusi and her daughter Sima discuss advance care planning. They’re matter-of-fact about end-of-life care, working out what matters most to Pusi.



(HQSC, NZ, 2019)

Video: Advanced care plan starting the conversion

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(The Better Health Channel, Australia, 2015)

Video: Tammy Wells has a Conversation that Counts

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Tammy Wells shares her story following her own experiences of losing her mother to a short illness. 

(Auckland District Health Board, NZ, 2015)

Video: Advance Care Planning – act while you're still healthy

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(The Better Health Channel, Australia, 2015)

Video: Clive Aspin's story (English subtitles)

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Clive Aspin wants to make sure his future health and end-of-life care is as pain-free as possible and that he shares it with those he loves. Clive and his partner Terry talk about putting together an advance care plan when they bought their new house and wrote their wills.


(HQSC, NZ, 2019)

Video: Arthur Te Anini's story (English subtitles)

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Arthur Te Anini has written an advance care plan for his future health and end-of-life care. In the video below, he talks about how writing down what he wants to happen has given him and his whānau confidence about the future. Watch Arthur Te Anini's story (available in multiple languages subtitles)(external link)



(HQSC, NZ, 2019)

Video: Noel Tiano's story (English subtitles)

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Noel Tiano believes that his advance care plan gives him the freedom to deal with death on his own terms. Watch Noel talk about how planning his future care has brought him comfort and a sense of peace. Watch Noel Tiano's story (available in multiple languages subtitles(external link)

 
(HQSC, NZ, 2019)

Video: Cheryl Cameron's story (English subtitles)

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Cheryl Cameron is a retired documentary filmmaker. Since being diagnosed with Parkinson's Disease 11 years ago she has taken up dancing the tango. She now helps run therapeutic tango classes for people with neurological conditions. Her advance care plan focuses on her choices to continue with tests and treatments, or not.

(HQSC, NZ, 2019)

Video: Living For Today Planning For Tomorrow subtitled - Arn and Joseph's story

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Living For Today Planning For Tomorrow: Arn and Josef’s advance care planning stories. Watch Arn and Joseph's stories(external link).


(ACP NZ, 2014)

For more personal stories, visit Health Quality & Safety Commission, NZ(external link)

Advance care planning(external link) Health Quality & Safety Commission, NZ
Advance care planning in 5 steps(external link) Health Quality & Safety Commission, NZ
Letting go – what should medicine do when it can't save your life?(external link) Dr Atul Gawande, The New Yorker, 2 August, 2010
Advance care planning(external link) Age Concern, NZ
Hospice NZ(external link)

Brochures

Online module

Considering your own future health care(external link) Advance Care Planning Cooperative, NZ
An online module for everyone working in health care and any other interested people. 

Contacts

Regional ACP contacts and processes map(external link) Advance Care Planning Cooperative, NZ
This map shows the contacts for advance care planning in each region, as well as the process for storing your plan when it is complete.

Brochures

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Credits: Healthify editorial team. Healthify is brought to you by Health Navigator Charitable Trust.

Reviewed by: Dr Tammy Pegg, Clinical Lead, Health Quality & Safety Commission

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