March 31 was a day of reflection for me, marking the 17th anniversary of the passing of Terri Schiavo, 13 days after being removed from a feeding tube on March 18, 2005, at the behest of a local court.
This capped a bitter, decade-long legal battle that involved Congress and even the president – and in the process, sparked a fierce national debate over end-of-life wishes in America, and the tragic depths to which familial conflict can reach when someone becomes incapacitated without having first completed an advance medical directive (also known as a living will).
For anyone in the estate planning profession, March 31 remains a meaningful date that symbolizes the “why” behind what we do. Having a complete estate plan isn’t just about leaving behind a legacy – it also allows the last days of life to be truly about our loved ones. The Terri Schiavo case is a constant, high-profile reminder that being able to say goodbye in a way that is in accordance with each person’s faith and values is not a given. In fact, 70% of Americans today still don’t have a will.
My Own Family’s Story
The Terri Schiavo case also carries personal resonance for me. In October 2011, shortly after I began my career as a trusts and estates lawyer, my otherwise healthy mother was diagnosed with terminal pancreatic cancer. The news was shocking. While helping others plan their estates was my career, it suddenly became deeply personal. The memory of Terri Schiavo and her death less than a decade prior prompted us to make sure we fully understood what my mother’s wishes were.
As a great testament to her thoughtfulness and love for her family, my mother had already done much of the legwork when it came to setting her estate plan. Many people do not. Death is unpleasant to think about, but it’s a universal experience. Planning the decision-making over one’s property, healthcare and finances ahead of time in the event that one becomes incapacitated or passes away can prevent hardship like that suffered by Terri Schiavo from ever occurring.
My mother had a will, a durable power of attorney and an advance medical directive completed or nearing completion at the time of her diagnosis. This was all very helpful, as she (and really, our family) wasn’t forced to begin the planning process from scratch during this difficult time. I can attest from my time as an estate planning lawyer that it can be particularly challenging to plan when someone’s health is already in the declining stages.
Grateful for Meaningful Moments
All of this allowed us to spend our remaining time together deepening our bond and having conversations we might not otherwise have had about life. It also helped prepare us for what was among the most important elements in the Terri Schiavo case: the role of faith in relation to end-of-life care and what happens to a person’s body as they take their last breaths and after they pass away.
Often, family members aren’t fully aware of what these wishes are, or how important they are. Terri Schiavo’s Catholic faith played prominently in the contested nature of her end-of-life healthcare decisions, which became a tragic, constant battle of push and pull that ended in a courtroom rather than a living room.
My mother was similarly part of a faith-based community, and she placed great importance on what her end-of-life care would look like, and how her body would be treated in her final moments and after she passed away. The rest of my family has varying connections to faith, and without her directive, we wouldn’t have known all of the things she wanted, what customs to follow, or even what questions to ask.
On a Mission
Having an advance healthcare directive is an extremely important component of an estate plan, but to many individuals it can be prohibitively scary to even start thinking about incapacity or death. To get started, take out a piece of paper and a pencil. Take a deep breath. Then, jot down responses to the following prompts:
- What matters to me is [. . . ]
- If I were having a good day, I would be doing the following [. . .]
Considering simple prompts like these can help you get in the mindset to address the harder choices you'll confront when you are presented with specific decision-making in your advance medical directive form, whether that form originates with an attorney, online self-help solution, faith-based resource or healthcare professional.
Having studied the Terri Schiavo case, I’ve always made sure those close to me take the necessary measures to prevent a repeat of her tragic experience. That’s why I’ve made it my goal to help others with estate planning as a labor of love, and to use my lived experience as a testament to its importance.
Because of the fact that my mother planned her estate before her diagnosis, we were able to enjoy her last 19 months as much as possible – with frequent get-togethers and funny “remember when” stories – laughing, loving and enjoying each other’s company because we knew the difficult and unpleasant questions were already answered.
Allison L. Lee is the Attorney-at-Law, Director Trusts & Estate Content for FreeWill, a mission-based public benefit corporation that partners with nonprofits to provide a simple, intuitive and efficient online self-help platform to create wills and other estate planning documents free of cost. Through its work democratizing access to these tools, FreeWill has helped raise billions for charity. Prior to joining FreeWill, Allison spent more than a decade in private practice.
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