End-of-life planning is scary, but important with a rare disease

Planning for what happens after I die is such an uncomfortable topic that I want to run and hide. Somehow, just thinking about death makes it feel more real, even though I should have years of life left. Yet, I know that hemophilia A makes my life more fragile.

I must confess that, for the most part, I ignore the thought of my own death. Prior to this summer, I’d been relatively healthy and physically active. While hemophilia treatment has come a long way in the past few decades, there are still risks. While the chances are small, I could be hit by a car or experience a medical emergency. If this happens in my rural area, the local hospitals are not well-equipped to support patients with bleeding disorders.

As I prepare for surgery for superior mesenteric artery syndrome, I realize it’s time to update my paperwork. I’ve decided to finally create a family trust to manage my assets. I have to write a formal will, choose a durable power of attorney (giving an individual of my choice the authority to manage financial matters), and sign an advance directive (to guide and appoint healthcare decision-making).

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Facing the forms head-on

I’ve started working through all the forms with an attorney, and I’m freaking out a bit. I feel as though completing the paperwork will somehow lead to my demise. This isn’t logical, but in a society that often avoids conversations about death, any hint of preparation makes it feel too real, at least for me.

I’m remaining brave and working my way through each document. I’ve reviewed how my belongings would be divided among my daughters. Regarding an advance directive, I’ve found I want additional lifesaving measures, beyond what seems to be considered “standard.” I would also want my loved ones to wait a bit longer to take me off life support, even if doctors say there is no hope. (It may be rare, but doctors have been wrong in some instances.) I’ve made changes based on what feels comfortable to me.

It is essential to put our wishes into writing. We can’t rely on others to remember them. Documenting them helps our family and serves as a guide in the event that we are unable to speak for ourselves. It’s a binding document that healthcare providers are required to honor. This is why directives are so critical.

I’m reaching out to the two individuals I have chosen and asking them to be in charge of the family trust and my advance healthcare directive, respectively. Discussions are scheduled so they can learn and understand what I want when I die or can no longer make decisions for myself. It is simultaneously strangely comforting and terrifying to plan these conversations.

Planning for death is scary, but important

Please know, as hard as it is to face our death by planning for it, doing so is vital. I also believe it is a compassionate choice we can make for our loved ones. Letting them know what we want so they don’t have to guess is a gift to them. I hope these documents won’t be needed for a long time, but I’m proud of myself for having the courage to move past the discomfort and plan appropriately.

If you have a rare disease, please consider completing paperwork that directs people in the event of your death or inability to make decisions for yourself. By boldly addressing these matters, you ensure that your desires will be realized, and you take the guesswork away for others. Preparing for death doesn’t mean it will happen soon, but not preparing might put our loved ones in tough positions.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.