“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.

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.

ACP discussions are also often mistakenly thought to be about preparing for death or dying. It is much better to think about it as making preparations in advance, so that we no longer have those worries as a continuing burden anymore.

Talking about a loved one with a chronic disease or debilitating illness especially when they may need more care – about their wishes and intentions is difficult. Often it is mis regarded as taboo because it is linked to talking about dying. This is misunderstood and can lead to an avoidance of this important topic for discussion. 

Advance care planning (ACP) involves talking about your loved one’s values, beliefs and preferences in regards to future health and care while they are still able to make decisions and communicate their preferences and acceptable outcomes.  This conversation can be initiated at any time, even when they are still healthy.  

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

1- When there is a change in their condition or your loved one recently experienced an unstable phase in their illness/condition

2 – When your loved one has a chronic progressive and life limiting disease or approaching end of life

3 – When a person is isolated or vulnerable

Caregivers are often particularly suited to broach the topic of advance care planning, because they often spend the most time with the loved one; and may be the person with whom the loved one is most comfortable to share their concerns with.

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

The discussion will also talk about your worries and anxieties. These discussions may reveal undisclosed hopes, sometimes unrealised concerns, especially 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 or wishes on finances, inheritances, family, religious rites etc. Importantly, advance planning allows everybody to have more control and purpose toward an inevitable outcome. 

The community worksheet will be a useful initial guide for discussions on Advance Care Planning.  It is advisable to seek guidance from your primary healthcare provider for more details on ACP medical queries and documentation.

Advance Care Plans aims to ease the burden of decision making on the part of family members should the individual become unable to make decisions for themselves. It allows better peace of mind for family and loved ones so they don’t have to guess about what is important to the patient. For many patients and family members, it has a highly positive impact, leaving everybody with clarity in moving forward, and reducing some worries and concerns about care.

Advance Care Planning ensures a loved one’s wishes are understood and respected, especially near the end of life. Depending on those wishes, emphasis may be placed more on ensuring comfort rather than medical interventions, or conversely, interventions may be given more priority. 

It is important to know that the standard and level of care provided is never diminished by having an Advance Care Plan. On the contrary, in many countries with long established ACP Programs, care provided for patients with an ACP at the end of life often have high satisfaction rates.

Some components of an Advance Care Plan must be presented to healthcare providers to be used. This is often done when a patient deteriorates and is very ill.  It is usually needed when your loved ones may need further treatment, but are unconscious and are unable to make a decision regarding what they want or do not want . The 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 loved ones and their family members on what to do. It covers plans for medical interventions (dos and don’t), and other plans for their 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 often misunderstandings of what is Advance Care Planning (ACP). We must also be aware of what ACP is not.

1 – I don’t need an Advance Care Plan if I am young and in good health.

– Unfortunately, too many young people still get struck down with traumatic injuries and severe debilitating illnesses leaving them in a state where they may be unable to make their own decisions.

2 – My loved ones will know what I want when the time comes

– This leaves a burden on them especially when they have to make a decision where doctors may recommend not to continue life-sustaining treatments. 

3 – An Advance Care Plan (ACP) only matters if I put it in writing 

– In practice and in most instances, medical professionals will discuss with identified family members for the agreed plan even when there isn’t one in writing. A written ACP is much better in terms of clarity and weightage. 

4 – Once I put my plans in writing, I can’t change them 

– This is a myth; all ACPs are fully voluntary, and can be changed at any time. 

5 – I need a lawyer to create an advance care plan 

– In Malaysia, the Advance Care Planning is NOT an Advance Medical Directive; therefore it does not have the legal weight of a directive, and it does not need a lawyer for it; however, it is legally persuasive.

6 – ACP are routinely disregarded by family members and medical teams 

– The ACP is usually considered a professional medical document and is legally persuasive; so it is not routinely disregarded unless it goes against standard practice, availablility of resources or capability of caregivers. 

7- My ACP is best kept in a safe deposit box with paper copy given to my doctor

– Your ACP needs to be presented to healthcare providers at the hospital during any emergency situation for the necessary action to be undertaken.

Here’s an elaboration of modified step-by-step approach to Advanced Care Planning (ACP)

1 – Think 

i)  Educate Yourself: Start by learning about ACP and its significance. Understand the different components of ACP, such as medical interventions and communication strategies. Educate yourself about the available resources and support in your community. Then understand your loved ones condition, disease and prognosis. Educate yourself on the outlook on end of life for someone with a similar condition. 

ii) Reflect on Their Values and Preferences: Take time to ask and then reflect on their values, beliefs, and healthcare preferences. Consider what quality of life means to them, what medical interventions they may or may not want, and what matters most to them in terms of health and well-being. Put yourself in their position in your reflection. 

iii)   Help them with a Healthcare Proxy: Help them find a trusted person who can act as their healthcare proxy or surrogates. Some to discuss their ACP goals and preferences with, some who will understand the wishes and are willing and available to advocate for them if your loved one is unable to communicate or make decisions. Otherwise, you can be that Healthcare Proxy. 

2 – Talk

i)  Initiate Conversations: Start conversations with others around your loved ones, including family, close friends, and healthcare providers. Share all thoughts and concerns about end-of-life care, and help your loved one express wishes and goals. Listen to their perspectives and address any questions or concerns they may have.

ii) Discuss Treatment Preferences: Have conversations specifically about treatment preferences in different scenarios, such as life-sustaining measures, resuscitation, artificial nutrition, and pain management. Consider potential medical conditions or situations that may arise and discuss preferences for each.

iii)   Continuously communicate with all other family members about ACP decisions. Keep them informed of any changes or updates made, and ensure they know where all ACP documents are stored.

3 – Share

i)  Help Document Preferences: It’s essential to put preferences in writing and share with all  other care-givers or family members.

ii) Communicate with Healthcare Providers: Share your ACP documents and preferences with healthcare providers. Discuss goals and ensure they understand wishes. Ask them to include the information in medical records.

iii)   Review and Update Regularly: ACP is not a one-time event. Review ACP documents periodically and update them as needed. Life circumstances, personal beliefs, and healthcare options may change over time, so ensure preferences reflect current wishes.

4 – Revisit and Reassess

Revisit ACP discussions and documents during significant life events or there are any changes in health status. Help your loved one reassess preferences, have conversations to ensure everyone is aware of any changes, and make necessary updates to all ACP documents.

Family members, loved ones and caregivers are often the ones who spend the most time with those who are ill, have debilitating conditions or are progressively worsening. They are inevitably also the ones with the most stress, often in situations where they are unable to cope. Any measures, big or small, that can provide support, or caregiver respite, is often most welcome. Caregivers may also have the opportune occasion or encounter the appropriate circumstance to discuss this matter of the ACP; therefore, the support of caregivers cannot be neglected in any comprehensive community ACP program.

This is a useful article to understand more about this issue and how to address it better. [Link]

Here are some helpful resources online

• Hospis Malaysia Carer’s Guide Book [Link]

• MAPPAC Caregiver Handbook for Children with Palliative Care Needs [Link]

• Hospice UK [Link]

Home Nursing Guides and Skills

– Basic Home Nursing Needs for the Elderly and Infirmed

– KKM Penjagaan Pesakit di Rumah [Link]

– Tesda Philippines [Link]

Personal Hygiene / Oral Hygiene / Genital Care

– Youtube – modified bed bath  [Link]

– Youtube – changing diaper for a bedridden patient  [Link]

– Youtube – How to use a bedpan [Link]

Feeding and Nutrition

– Youtube – Penjagaan Pemakanan Pesakit Strok [Link]

– Lifting and Moving

– Youtube – Turn and positioning a bedbound patient [Link]

– Youtube – One person manual transfer from the wheelchair to bed [Link]

– Youtube – One person transfer from bed to wheelchair [Link]

– Youtube – Passive Range of Motion (PROM) [Link]

Exercise

– KKM Portal MyHealth – Senaman yang selamat [Link]

Care for the Bedridden Patient

Fully bedridden patient

– Youtube – Penjagaan Pesakit Terlantar [Link] 

Terminally ill patient

– Youtube – The Hospice Care Plan [Link]
– Hospis Malaysia – About the Process of Dying [Link]
– NHS – Changes in the last hours and days [Link]
– Hospice UK – What to expect in the last moments before death [Link]

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

– Overview of Medical Diagnosis and Prognosis

– Stated Proxy and Next of Kin Contact Details

– Preferred Plan of Care

– If Condition Deteriorates

– POLST – Preferences for Life Sustaining Treatments

– Key guidance and information