ACP or Advance Care Planning ...
.... is an often missing or underappreciated part of the end-of-life process. However, done in advance of illness or dying days, a completed ACP can be a lifeline of clarity for how to administer your wishes at a time when everyone is stressed and grieving. This plan empowers you to clearly choose what you want for your care, and it also is a gift to your loved ones, who will now know what you want and how they can support. Further, the process of creating an ACP can be an end-of-life conversation starter and it can open the path to dialogues, exchanges, and reflections with the people in your life.
What is it and Why would you do an Advance Care Plan?
Advance care planning is a plan to prepare for what you’d like to have happen for your care at the end of your life. Essentially, you create a plan for the ideal scenario as well as for contingencies. It is important to reflect on what your ideal scenario is, as well as what is acceptable and what is not negotiable in case your ideal scenario is not doable due to presenting circumstances that may or may not have been expected.
As part of this process, you select a Substitute Decision Maker which is someone who can speak and make decisions for you if you cannot.
When you complete an ACP, your Substitute Decision Maker, as well as your health care professional(s), can use your plan to inform their choices for your care if you are unable to speak for yourself. It assists your loved ones by reminding them of what is important to you, and with that, it gives your loved one a clear conscience, that what s/h/they are choosing is in line with your wishes – no regrets – and you have the peace of mind that your wishes are represented if you become incapacitated.
When there is no plan or conversation about end-of-life care, it can be challenging for your Substitute Decision Maker and your family members to know what to do or what to choose. It can sometimes lead to regrets for the choices made, or second guessing their choices because they are not clear on what your wishes were. The “What if…” doubts can creep up which can compound the grief and/or distress they experience finding themselves at this juncture where you, their loved one, is ill.
The choices the Substitute Decision Maker is tasked to make are not necessarily “easy” but the path to the choice(s) is clearer when an ACP is completed and there is an open conversation about end-of-life care.
Where to find ACP kits?
ACP kits can be found for free online. There are different kits available, and some are more thorough and very informative taking you through step by step and presenting a variety of scenarios for you to consider and reflect on your values in addition to what is meaningful to you relative to your care.
At the end of this article, I have put together a small list of helpful resources to help you begin this process.
Since the document is not a legal document, you can update it anytime. You can add points or cross off items and you can elucidate as you see fit to be clearer about what relates to your life circumstances.
When to complete it?
Today is a good day to start this process, and it is a process. These types of conversation take time, for reflection, to research, to discuss, to discern how best to incorporate your values into your end of life care.
An ACP plan can be completed by any adult, at any age, no matter their health status. It is, however, easier to do this when you are in good health simply because when someone is newly diagnosed or have an advanced illness, they already have a lot of consider and to address about their daily care, hence, it is much easier to start this process earlier.
However, if there is no plan yet and you have been diagnosed or currently experiencing an illness, no matter the illness trajectory, it is better to start this process as soon as possible so as to plan for the unexpected.
It is a conversation to have with some regularity and/or when circumstances change for you. Depending on when you first completed your ACP, you may have changed your mind as time or your health status changes, therefore, reviewing and updating your ACP document at regular intervals is a good practice. Any updates should be dated and initialed to make the latest changes clear to the reader. Remember to update your Substitute Decision Maker of any changes in your wishes.
Who should be involved?
You are the one making the decisions. If you wish it, other people such as your health care provider(s), and/or your close loved ones could be involved in a conversation to discuss possibilities, probabilities, and scenarios but, in the end, you are the one who decides.
ACP webinars are also very helpful in the process as they provide a wonderful place to learn, discuss and clarify various scenarios. The group discussions can bring a lot of wisdom and a better understanding of the value of ACP in addition to sometimes it can bring up situations that you may not have thought of.
Once you have completed your plan, share your decisions with your Substitute Decision Maker and your loved ones so that all those who would be close to you during your last weeks and days of your life are aware of what your wishes are and what is most important to you regarding your care at the end of your life.
Where to store it?
Store your paperwork somewhere safe and accessible, therefore, not in a safety deposit box, for example. Let your Substitute Decision Maker know where to find your paperwork.
If you are nearing the end of your life, a note on the fridge is often handy for the health care professional(s) to know where to find your paperwork as well as a list of your contacts and further details about your last days.
Contact me
To discuss advance care planning further and get assistance on clearly stating your wishes, contact me at deathdoula@gmail.com or schedule an appointment with me.
Helpful resources …..
Below are sites to help continue your search about Advance Care Planning: