“Advance Care Planning (ACP) is a process that supports adults at any age or stage of health to understand, discuss and share their personal values, life goals, and preferences regarding future medical care.”

(Sudore et al. 2017)

Advance Care Planning helps to improve care for people nearing the end of life by enabling better planning and provision of care to help them plan better for their remaining days. Death or dying is often a difficult topic to talk about, often regarded as taboo. This results in unnecessary fear and uncertainty, leading to indecision and ultimately actions which may be against one’s intention and wishes. Talking about ACP helps alleviate fears, often leaving a sense of relief and positivity towards life.

Advance Care Planning will help your loved ones and healthcare providers know your wishes, even when you may not be able to speak for yourself. It can give peace of mind to your family and loved ones so they don’t have to guess about what is important to you. In particular, it eases the burden of decision making on family members where the individual is unable to make decisions for themselves.

Advance Care Planning helps to ensure that your wishes are understood and respected at the end of life.

We talk about what matters to you, your values, your preferences. About what is important to you, about what gives you strength and happiness and contentment. Topics of ACP discussion starts off positively and often optimistic.

The discussion will also talk about your worries and anxieties. These discussions may reveal undisclosed hopes, sometimes unrealised concerns nearing the end of life and often simple wishes that can be easily fulfilled by loved ones. They can identify strong inclinations towards or against certain types of care or treatment interventions.

It will cover what you think and feel about certain treatments, whether they are acceptable to you, or not; importantly, these discussions will only go as far as you feel comfortable and willing. These discussions may also explore your wishes about where you would like to be cared for, should you need it, either in hospital, long-term nursing facility or at home. It may stir further discussions on wishes on finances, inheritances, family, religious rites, what happens to those who are left behind etc.

Advance care planning involves discussing your values, beliefs and preferences in regards to future health and care while you can still able to make decisions and communicate your preference and acceptable outcomes.  This conversation can be initiated at any time, better when you are still healthy. 

Here are some situations in which an ACP should be discussed:

1 – When there is a change in your medical condition or you have recently experienced an unstable phase in the illness/condition

2 – When you have a chronic progressive and life limiting disease or approaching end of life

3 – When you are worried, feeling isolated or vulnerable and concerned about leaving loose ends behind

Some components of an Advance Care Plan must be presented to healthcare providers to be used. This is often done when a patient’s condition deteriorates and is very ill.  It is usually needed when the patient may need further treatment, but is unconscious and is unable to make a decision regarding what he / she wants or do not want . The Advance Care Plan (ACP) would be used as a guide to tell doctors of their preferences and choices.

It is important to reemphasize that the ACP is primarily a discussion to come up with an agreed plan between the patient and his. / her loved ones on what to do. It covers plans for medical interventions (dos and don’t), and other plans for the patient’s care and handling of their personal effects. As far as it is agreed, applying such a plan is not expected to be difficult. Documentation of such plans usually make it easier to implement it.

There are several common recurring themes in an ACP discussion. Any comprehensive ACP discussion should have a checklist with these core themes that need to be addressed. They may not be completed within a single discussion session, often these discussions are undertaken informally or over several formal sessions, but all core themes should be addressed.

Core themes in an ACP discussion includes:

1 – Personal and family goals

– Explore their concerns and what is important to them, what their views are towards their life and health. Whether they have any relationships to mend or any goals or desires that they would like to fulfil for themselves or for their family

– Discuss on who they would trust to represent them to be their decision maker (surrogate decision-maker)

2 – Treatment goals

– Explore goals of care that they prefer, whether it be comfort care that improves quality of life or curative, life-sustaining treatment

– What to do if sudden deterioration of condition occurs

3 – Care near the End of Life / Preferred Location of Death

– How to manage expected symptoms near the end of life; types and level of nursing care if needed

– Your loved one may die at home, nursing home, hospital or a hospice.  They may have a preference to pass away at home surrounded by family but as a caregiver, you might have concerns on your ability to care for your loved one.

4 – Funeral Arrangements / After-effects (not included*)

– Wishes for arrangements for funeral / religious / family etc

– After effects on financial / inheritance / family / etc

Healthcare providers play a pivotal role by guiding patients and their loved ones through complex medical decisions with appropriate and up to date information. By initiating or facilitating these important conversations, they can help patients going through their disease process articulate their values and preferences, ensuring that their care aligns with their wishes. Healthcare providers also often bridge the communication gap between patients and family members, and even with the broader healthcare team, fostering greater understanding and collaboration toward to common goal. This ultimately enhances satisfaction and trust, an essential step towards a more compassionate, patient-centred care.

1- Think about your Values and Preferences. Consider what kind of medical treatments you would want, or not wish to receive, if you are seriously incapacitated, or injured and unable to communicate.

2- Discuss with Loved Ones and Healthcare Providers. Have discussions with family members and loved ones about your wishes and preferences. Discuss with your doctors about your medical condition and seek information and advice. This helps everybody to know and understand your intention, wishes and preferences.

3- Choose a Surrogate Decision-maker. Select someone (or a few) you trust to make medical decisions on your behalf, inform them about your preferences and their roles. Seek their agreement and understanding.

4- Document your wishes in the ACP document. It is preferred that you document your wishes in an Advance Care Plan document. This document provides clear guidance to your healthcare providers and loved ones about your preferences, in unexpected or future events.

5 – Review and Update your Document. Regularly review and update your ACP document; especially if your situation or preferences change. Be aware to inform everybody involved about all changes and discard all previous copies; keeping to latest copy in an easily accessible location.

ACP Links from Malaysia

Hospis Malaysia – Decision-making for the end of life [Link] ENG

YouTube Videos from other countries

Learning more about ACP [Link] ENG / BM Subtitles

ACP explained in animation [Link] ENG

ACP for everybody [Link] ENG / BM Subtitles

Can talk about dying, meh? [Link] ENG / BM Subtitles

Starting the conversation [Link] ENG

Having the conversation [Link] ENG

ACP  discussion process – animation [Link] ENG

The questions that matter the most [Link] ENG

Changing one’s mind about an ACP decision [Link] ENG

5 steps towards your ACP [Link] ENG

Online Resources from other countries

Helping with information and deciding [Link]

ACP Booklet (AIC Singapore) [Link]

Advance Care Planning Australia explained [Link]

Advance Care Plan – UK and Wales [Link]

Common Myths about Advance Care Planning [Link]

Advance Care Plan Worksheet / Community Workbook (in progress)

– Statement of Wishes (coming soon)

– Overview of Medical Diagnosis and Prognosis (coming soon)

– Stated Proxy and Next of Kin Contact Details (coming soon)

– Preferred Plan of Care (coming soon)

– If Condition Deteriorates (coming soon)

– POLST – Preferences for Life Sustaining Treatments (coming soon)

– Key guidance and information (coming soon)