While tough to talk about, end-of-life planning helps our loved ones

Here are some tips on how to approach the topic

Jennifer van Amerom avatar

by Jennifer van Amerom |

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I sometimes feel like I’m laughing in the face of death. When I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), all my internet searches informed me that I’d have about five years to live. Now, more than 14 years later, I’m still going strong with no signs of slowing down.

Thanks to pharmaceutical advancements, we NMOSD patients have more treatment options than ever before. To say I’m grateful for these developments is an understatement, because dying isn’t something I think about anymore. I’d be naïve if I said that living with NMOSD, or any rare disease for that matter, doesn’t shorten a person’s life span, but we’re a far cry from those early days and a five-year prognosis.

While I’ve been updating our family records recently, I’ve also been putting off the tedious task of putting together a will. That’s partly because I’m working on several far more interesting projects and partly because thinking about the end isn’t pleasant. My husband always jokes that when it’s his time, I should take him up north and plant a tree on him. I used to laugh at that every time he said it, until one day when I realized he was serious.

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Prevalence of disease for NMOSD estimated at 22,000 US patients

Back in 2019, a month before my dad passed away, he confessed that he wasn’t ready to go. All I could say to him was, “I know.” When he was hospitalized, my siblings and I talked through his arrangements, which was a surreal experience, particularly because he hadn’t passed yet.

Among my four siblings, I’m the organizer of the group and have the strength to get uncomfortable things done. I’ve always been tough on the outside, and I credit NMOSD for giving me mental strength when I’ve needed it. I made the call to transfer Dad to a hospice care facility, and I delivered his eulogy. Dad never expressed what he wanted until we were facing his end. Executing his wishes in a last-minute scramble was something I could’ve done without.

Having siblings made all the difference during that time, which is why I want to make sure my only child, Sophie, doesn’t have to deal with what I did when Dad became ill. While I have no intention of facing my end anytime soon, I don’t want my family to have to stress about the details someday.

How to have the difficult conversation about dying

One of my best friends leads operations at a funeral home. She’s worked there since her internship out of college, so she’s seen many families scramble, including mine. She was the one who educated me about end-of-life planning and the options available.

One of the biggest considerations is cost. Paying in advance for funeral services and a spot at the cemetery helps us avoid burdening our loved ones later. Additionally, prices today likely will be less expensive than years or decades later, even if they’re paid in monthly installments.

I initially worried about bringing up this topic with my family for two reasons. First, we all still miss Dad, and losing him will feel raw for a long time; and second, I don’t want my family to panic and think I’m bringing up my arrangements because my health has taken a turn for the worse, which isn’t the case.

I sought guidance from my best friend, and she offered me the following tips:

1. Choose the right time and place. While you’re updating a will, initiate a matter-of-fact conversation about your wishes. Just don’t plan to have the conversation over a joyous family dinner.

2. Bring up the discussion with sensitivity. Start by expressing love and concern for your loved ones. You might say, “I care about you all deeply, and I want to make sure we’re all prepared for the future.”

3. Be honest and direct. Clearly communicate your wishes regarding end-of-life care, including medical treatment preferences, funeral arrangements, and any other important decisions you’ve made. Being honest and open will help alleviate any confusion or uncertainty.

I prefer to get this discussion out of the way while I’m still young and capable, so when my turn eventually comes, I’ll be able to focus on cherishing those precious moments together.

Note: Neuromyelitis 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 providers 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 Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.


J Lynne avatar

J Lynne

Thank you for this column. It's a tough conversation to have but so necessary. My mom passed away last year and her greatest gift to us was that we all knew and accepted her wishes for her medical care, cremation over burial, and dispersal of her home and belongings. We knew all her accounts, her passwords, where important papers were, etc. At such an emotional time, it's a blessing not to be scrambling for answers and plans at the last minute. We're trying to follow in her footsteps and get ourselves as organized as she was!


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