We are halfway through the week-long observance of National Healthcare Decisions Day (April 16). Every day of this campaign has been assigned its own, unique theme. Today's theme is "Spread the Word: A day to tell others that you've engaged in advance care planning and encourage them to do the same." Today, Carely's Content Marketing Manager, Christina Best, tackles this theme by sharing what it was like to complete her own advance directive.
Confronting My Mortality
I developed self-awareness at a young age. I attribute this to having older parents; My mom was 42 years-old when she had me. I can remember the moment I became fully aware of my own mortality. I was about 13 years-old, and I was trying to conceptualize human existence while talking to my parents in our family room. "So, I'm going to die someday." Not a question but the acknowledgement of an unavoidable reality. I felt an unusual pressure in my chest, then the rush of blood. It made my arms and legs feel cold and heavy. I vocalized this thought to my parents. My mom held me on the couch as I cried.
The Importance of Advance Care Planning
In 2011, I lost my father due to complications of Parkison's Disease. He was diagnosed with PD in 2000, and he died at the age of 68. Without an advance directive, I had to support my mother in making numerous decisions about my dad's end-of-life (EOL) care. I'll never forget my mother consulting me on decisions about his EOL medical treatment, including whether or not to insert a feeding tube.
Without an advance directive and my dad's inability to make his own EOL medical choices, my mom and I had to decide what care we thought he would want. Being in this position is emotionally challenging to say the least. You're forced to evaluate the quality of a loved one's life. EOL situations are stressful enough without the added pressure of having to make care decisions on behalf of your loved one.
Death is inevitable. Rather than feel immobilized, we need to re-frame our thinking and allow this inevitability to empower us. Furthermore, I don't want to burden my loved ones with my EOL care decisions. It is for these reasons that I've decided to walk you through my experience of learning about and creating my own advance directive.
Understanding Advance Care Planning
Advance care planning "is the process of thinking about what your choices would be for future healthcare should you be unable to speak for yourself. It involves reflecting on your personal beliefs, goals and values, understanding your options, discussing your choices, documenting your decisions and sharing them with your loved ones."
(What You Need to Know about Advance Directives, Doylestown Health)
The only time I've ever seriously thought about my health in life or death terms was when I opted to list "organ donor" on my license. As I considered my EOL care, here are some of the first thoughts that came to mind:
- No breathing or feeding tubes, unless doctors know for certain these measures will save my life.
- DNR, for sure.
- If I'm brain dead, I don't want to kept alive very long. Especially if I'm elderly.
- No organ transplant if it's likely to be risky.
- No extraordinary measures if I'm lacking mental acuity.
Preparing my Advance Directive
Much like hospice and palliative care, I assumed, before completing this exercise, that advance directives and living wills are synonymous. Somewhat false. Advance directives are "oral and written instructions about future medical care." Living wills are a part of the advance directive process, and they only account for "decisions about life-sustaining procedures in the event that your death from a terminal condition is imminent despite the application of life-sustaining procedures or you are in a persistent vegetative state" (The Difference Between An Advance Care Directive and a Living Will, AGIS; What Is The Difference Between A Living Will And An Advance Directive?, LawInfo).
A Google search for "advance directive Ohio" led me to a guide/form on the Cleveland Clinic's website. Using the guide, I filled out a healthcare power of attorney (naming the person in charge of making healthcare decisions when I'm no longer able to) and a living will declaration (forgoing life-sustaining treatment if I'm unable to make my own healthcare decisions). I was also provided with a donor registry enrollment form, which I opted not to do since I'm already registered with the BMV.
The hardest part about filling out my advance directive was navigating all the legal jargon. Fortunately, the terms are defined in bold at the beginning of each section for you. Another difficulty I faced was defining alternate agents--people who would step in if my primary agent/healthcare power of attorney (my mom) is unavailable. I'm an only child, and I have a very tiny extended family. I was forced to ask myself who I would trust executing my EOL healthcare wishes.
Overall, this exercise got me thinking critically about how I want to be treated at the end of my life. It also encouraged me to seriously consider filling out an advance directive (witnesses and all). I want to have my wishes in place now so there are no questions about my EOL care when the time comes. If the unexpected happened to me and I didn't have an advance directive, I would regret burdening my mom with my care decisions. As NHDD founder Nathan Kottcamp points out in Monica Mizzi's piece about advance care planning at a young age, healthcare decisions made by loved ones are often based on guesswork, and "this guesswork can result in lasting questions for family members about whether they did the right thing for their loved ones when they could not speak for themselves and left no guidance about how they would make decisions based on their values.” I would never want to put my mom in this position.
Part of my responsibility at Carely is to track all hospice and palliative care information being shared on social media. I've noticed that the conversations being had about these topics are exceedingly positive. It excites me that people in this industry--healthcare providers, administrators, volunteers--are working hard to normalize conversations surrounding death. I hope, in a small way, that my reflection achieves this goal.
I leave you with this: You're not too busy to create an advance directive, and you are brave enough to confront your own mortality.