Planning for the end of life when you’re still in the middle of it
Life is my priority, but planning ahead can be an act of living, too
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It was nearly a decade ago when I was handed my first expiration date.
After doing an unplanned and unwanted tour of several hospitals one cool autumn, I got the word that if a liver donor wasn’t found for me, I likely wouldn’t make it more than six months. I was recovering from a procedure and still waking up from anesthesia. After staring into the intense eyes of the doctor explaining this to my woozy head, I suddenly felt as sober as a judge trying a murder case. I probably would have hyperventilated had I not been so drugged up.
Was I scared? Terrified is a more accurate description.
To paraphrase the famous quote from “The Shawshank Redemption,” you either have to get busy living or get busy dying. I liked the living part best. I had so much to live for, including a little girl who was almost 6. There was no time to waste. I had no choice but to plan for a long life.
Planning ahead is an act of living
If you’ve faced similar fears since being diagnosed with metabolic dysfunction-associated steatohepatitis (MASH), you may find yourself feeling depressed about the future. I have been there myself. Yes, I even planned my own funeral at one point. Other than a handful of songs I wanted played, I have since scrapped the old program altogether because life is my priority, not dying.
Still, planning for the possibility that you may someday be unable to speak for yourself can be an act of living, too.
My most important piece of advice is to get yourself an advocate. You can and should advocate for yourself, but when you are vulnerable, such as during a hospitalization with advanced liver disease, letting someone you trust express your wishes can make things easier. I asked my sister, one of my three siblings, to serve as my healthcare proxy if I can’t make medical decisions for myself. I backed that up with an advance directive in my medical record spelling out the kinds of treatment I would or would not want and under what circumstances.
As sad as that may sound to some, it gives me enormous peace of mind. Advance care planning isn’t surrender. It’s making sure your voice can still be heard when you cannot speak.
Know what “quality of life” means to you. If a treatment could leave you unable to speak, walk, see, or do something else that matters deeply to you, think about what you believe you could handle. The Conversation Project offers a workbook designed to help people with serious illness think through what matters most to them and discuss it with loved ones and their healthcare team.
It’s easy to start thinking about the burden your care might place on family and friends, but this is your one and only life. Planning ahead can make caregiving less confusing for everyone. I know that with loved ones I’ve lost, I would have cheerfully cared for them if it meant having their company longer. I suspect many of us feel that way.
I also recommend putting together an “In Case I’m Incapacitated” file. The National Institute on Aging recommends keeping important legal and financial papers organized and accessible. Mine includes account information, the location of important documents, secure instructions for accessing passwords, and general guidance for running my life if I cannot do it myself.
Include the practical things, but don’t forget the human ones: foods you enjoy, things you dislike, people to contact, and how to care for your pets. I keep a running list so that anyone helping me would not need me to speak to know what matters.
And if it helps you feel better about your future, feel free to plan your funeral. The Federal Trade Commission recommends putting funeral preferences in writing and sharing them with family. The next time I plan mine, I’ll do it with a lighter heart. I’m sure I’ll have some very sad mourners, but I love to laugh, and I want to be remembered for my joy and weirdness.
I don’t want to be remembered for having an awful disease. I want to be remembered for the life I kept choosing while I had it.
Note: Liver Disease News 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 other 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 Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.
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