Advance Care Planning (ACP) is the process of planning for your future healthcare, to ensure you are given the care you desire in critical situations of your life. ACP involves making arrangements when you are healthy and capable for circumstances when you get severely ill or injured or become unable to make such decisions. Through ACP, you can outline the care you want to receive. In our earlier blog article, we discussed the importance of ACP, its benefits, and its requirements. In this follow-up post, we will provide a step-by-step guide to help you get started with advance care planning.
Things to Bear in Mind
- ACP, or sometimes known as Elder Care Planning, is for everyone at all ages and stages of health. Like health insurance, it is better to get started when we are young and healthy.
- You should be mindful that ACP elicits thoughts about end of life and death, which can be uncomfortable and seen as taboo in some Asian cultures. But it is not the essence of the process. The ultimate purpose is to plan how you would like to live and get cared for till the last day of your life. ACP is called a ‘Living Will’ for this reason.
- We understand that it may be difficult to engage in discussions about health issues with your loved ones. But as many who have carried out ACP have shared, holding such a deep and personal conversation with those you trust the most can actually help foster and improve your relationship bond.
With that said, now let us get started.
Steps Involved in the Advance Care Planning Process
ACP is not complicated. Essentially, there are eight steps in the ACP process, and we will walk you through each step so you can plan out your journey with ACP.
Step 1- Reflect on your Life Values & Beliefs
Living well and having a good quality of life until the last days of our lives are important to us, and it is the intention of having ACP. It involves aspects of your emotional, spiritual, mental, and physical health. But these have different meanings for each person. So, in this step, the first question to ask is, what does it mean for you to live well until the end?
Does it mean being able to live independently? How is self-support considered independence for you? Independence may mean the preservation of one’s dignity or continuation of family and community contributions without being a social burden. Independence may also mean being able to care for yourself at home, or make decisions for yourself, or being able to participate in activities outside the home, by yourself.
Does it mean being able to spend time with family and friends? Some people cherish family more than anything else and may wish to spend more time with loved ones. For them, life is worth living if they can be around family and friends.
Does it mean being able to enjoy your favourite pastimes and hobbies? Whether your hobbies and enjoyable activities are simple, adventurous, fun, or relaxing, you can decide that this is how you want to spend your days, enjoying the things you love. While some activities may no longer be feasible depending on your condition, those that are will be accommodated.
It can be helpful to think about what makes life not worth living for you. For example, to some, losing the ability to interact with family makes life not worth it. For others, it could be losing the ability to care for themselves in daily activities and be a burden to others. You can also turn to spiritual beliefs, or conversations with people you look up to and trust, for guidance during reflection. This step is personal and one should take time to think through it.
Step 2- Reflect on your Health Status & Experiences with Healthcare
In this step, question yourself about past experiences. Are there any healthcare experiences (either of your own or someone you visited in the ICU, for example) that could be a reference point for the care you would or would not want in the future? Have you ever cared for an ill family member or friend? What thoughts did you have when you were caring for that person? Write down these thoughts and questions, as they will help you when you are going through the process with an official ACP facilitator.
This step also requires you to review your current health status which may influence your decisions during the ACP process. Generally healthy adults likely only need general ACP. However, it could be useful to think ahead about conditions you might be at risk for. For individuals with active diagnosis or progressive conditions, such as cancer, dementia, and stroke, Disease-Specific ACP will be more applicable. If you have questions about your health conditions, you are advised to seek clarification from medical professionals. Having a clear understanding of the condition you are dealing with and how it may impact your life helps make ACP more manageable.
Step 3- Learn more about End-of-life Care Goals & Care Options
In Singapore, we have three (3) common types of ACP, and they correspond to three (3) health statuses.
- The first one is a general ACP. It is suitable for any adult or the elderly who is generally healthy and is mentally sound.
- The second type is a Disease-Specific ACP. This is suitable for adults or seniors with chronic, deteriorating conditions, such as organ failure or non-treatable cancers. Treatment preferences will depend on the specific disease and possible complications. This also incorporates a range of scenarios from low to high-risk options. Disease-specific ACP is best done in consultation with a doctor who is familiar with the patient’s medical situation and in the presence of the Substitute Decision Maker, as it is often more complex than general ACP.
- Lastly, we have the Preferred-Plan-of-Care ACP. It involves planning for end-of-life care situations, such as when a patient has fallen into unconsciousness or if the heart has stopped beating. Questions about care options and care goals like whether CPR or a ventilator is needed will be discussed. This ACP also explores the preferred place of care for the final days and the place of death.
Step 4- Determining who will make Decisions if you become Incapacitated
An essential part of ACP is to identify and appoint a ‘proxy’, officially known as a Substitute Decision Maker, or Nominated Healthcare Spokesperson. In this step, you will need to think of someone whom you trust to carry out your wishes and make decisions for you when you are incapacitated, (i.e. when you are not able to make decisions yourself). This person is typically a family member or caregiver who can be a part of the process early. Other persons you can consider are a friend, legal representative, or religious advisor. Being there from the start provides them with the opportunity to ask questions and obtain additional details. The person you appoint should meet the below requirements:
- be above 21 years old
- be willing to speak on your behalf
- knows you well and understand your wishes and concerns
- be able to tell your doctors about the care you would like to receive
- be able to follow through with your care preferences
Step 5- Having the Conversation
For some people, this is considered the most challenging part of the process. Talking about end-of-life care or elder care needs when one is still young and healthy can be uncomfortable. Cultural practice may even consider it taboo, making the conversation even more difficult. However, communicating your plans early to your potential proxy is essential. Find a good time to let this person know you are thinking about nominating them as Substitute Decision Maker for your ACP. Explain to the person why you selected them.
At the end of the discussion, they should understand that while it is an honour to be trusted, it is also a massive responsibility. Knowing this, you should also exercise some consideration if the person backs out. Give them some time or think of someone else to replace them. Once he/she agrees to be your Substitute Decision Maker, ensure you involve the person in the rest of the ACP discussions. Being part of the discussion is beneficial to both you and your proxy.
Step 6- Writing Down or Recording Wishes
At this point, you might want to involve an ACP facilitator to make sure you are not missing anything. An ACP facilitator is usually someone certified to help individuals, their families, and their loved ones through the ACP process. Alternatively, you can choose to document your ACP within the family with the Substitute Decision Maker. Writing down or recording your wishes is recommended because it could be years before your ACP is needed. Having only a verbal arrangement could mean that certain things might get forgotten, especially during a healthcare crisis when ACP is required.
Of note, although you have your wishes written, it is not a legal document. ACP is not a legally binding process. You can, however, make certain related parts of the plan legally binding, such as when you want to nominate the ‘proxy’ for your ACP to oversee financial arrangements and decisions, like handling your bank account, property, and other financial matters. This document is called Lasting Power of Attorney (LPA). It allows the ‘proxy’ – legally known as the donee – to act on your behalf on matters such as withdrawing from your bank account and making payments for medical expenses. LPA is recommended for all and is of particular importance to patients suffering from dementia, as mental incapacitation is almost guaranteed.
Another ACP-related legal process is Advance Medical Directive (AMD). It refers to a legal document that a person signs in advance stating that in case of terminal illness, he or she does not want excessive treatment to prolong life. You can refer to the official AMD form by MOH here. In Singapore, you can visit any accredited medical practitioner to get an AMD done. The process also involves a witness who can be a nurse or an assistant at the doctor’s office. If you prefer to bring your own witness, the person must be someone without any vested interest in your demise. Once the AMD is completed, you will need to submit it by post to the Registrar of Advance Medical Directives for it to take effect.
Step 7- Provide a Copy to the Doctor or Relevant Parties
After you have completed the ACP process and created your documents either with your proxy, lawyer, ACP facilitator, or doctor, we advise that you share copies with your Substitute Decision Maker, doctor, relevant family members, and caregiver. Doing so ensures everyone involved in your well-being knows what you want, making it even more likely for your wishes to be respected.
Step 8- Review & Adjust
ACP is an ongoing process that should be reviewed regularly, especially when your medical condition or life situation changes. One should not be afraid to make changes to give ourselves an opportunity to live more comfortably. Ask for clarifications and make changes at any time to better suit your needs.
We hope the above guide is helpful. There are many ACP starter forms on the internet that you can use to begin the process. You can also talk to your doctors or ACP facilitator at any restructured hospitals in Singapore for guidance and advice. Do it for yourself and help your family members and elderlies break the taboo and do it as well. Remember, it is a ‘Living Will’.