This is the ninth installment in the Critical Dementia Skills (CDS) series. For more information on the series, start HERE. You can also click on the CDS tags in the blog for more.
I know very few people who are comfortable discussing this particular blog topic of healthcare decisions. After all, it does involve thinking about the end of our lives, and when we cannot speak for ourselves in that moment. Yet, it is a challenge to find many more important talks to have in one’s life. It is so important that many healthcare professionals call it “The Conversation.”
It’s a conversation that all of us should have, regardless of our current health. Yes, this is a conversation to be had by persons living with dementia, by care partners, by any family members. We will all leave this Earth and we do not know when that time will come, nor the manner in which that will happen.
The healthcare decisions, also known as “advanced directives” may not avoid all conflict (Smith et al), but this conversation is a gift – a gift to the person (us) when we die and a gift to those who are not dying. Silveira et al found that when wishes are written down, they are more likely there are to be followed by the family.
A 2012 meta-synthesis (review of multiple peer-reviewed research articles) of family interviews by Jackson et al found “The discussion around Advanced Directives and End of Life preferences with family members prior to and during decline was strongly suggested by the majority of the families. Families did report that the more detailed the loved one’s wishes were, the easier it was to make decisions at the end of life. The removal of the decision-making burden from families was noted as being one of the most important benefits of having Advanced Directives…” (Jackson, 2012).
Advanced directives have two parts:
- Healthcare Power of Attorney/ Healthcare Proxy – This is the person who someone chooses to make healthcare decisions when they are no longer able. Typically, this is a family member or friend with whom you can discuss your wishes, and trust will carry them out to the best of their ability. If you do not complete this, many, but not all, states allow this to start with a spouse as the decision-maker.
- Living Will – Describes your preferences regarding life-sustaining treatments – what you want to do or what you do not want to do. Most states have a standard government form; see a Catholic form in the next paragraph.
It is crucial to note on The Peace with Dementia Rosary blog that advanced directives are only the vehicle for expressing end of life care preferences; they make no judgment as to what choices that someone makes within. The Catholic Church, however, does have specific principles regarding the sanctity of life from conception to natural death. It will come as no surprise that we live in a world that does not wholly embrace these beliefs, so future articles will address how to address this sensitive topic in accordance with the teachings of Jesus Christ and His Church. My sense is that the popular misconception is that the Church expects us to suffer and to go through immense lengths to avoid death. The Lousiana Conference of Catholic Bishops has a pithy explanation of the Church’s position and includes a Catholic Living Will. The United States Conference of Catholic Bishops has a website that contains many resources, as does the National Catholic Bioethics Center. The end of life can present some stressful times; it is the hope of The Peace with Dementia Rosary that taking action on this Critical Dementia Skill with aid you in this planning to reduce stress. As always, you are in our prayers that you have the grace to do this.
Questions for you to think, write down, and share in the comments section (any or all):
- If you have created an advanced directive as someone living with dementia, what advice do you have for getting started?
- If you have facilitated the creation of an advanced directive as a care partner for a loved one, what would you say to other care partners?
- If you have already used the information of an advanced directive for a loved one who has passed away (of any condition), how did things unfold-was it helpful?
Thank you for reading this far and for commenting. Let’s tell hundreds more care partners about this concept by sharing the article. God bless you.
Join the weekly email newsletter and receive new articles when they are available. Click HERE.
If you like this an want to support more education and outreach, visit our Patreon Page for options: https://www.patreon.com/PeaceWithDementia
