How I’ve Prepared Myself for the End of Life

The day you’re diagnosed with a chronic illness is generally a day you won’t forget. The words from my doctor, Steven Nathan, made sense in the moment. They also became a collection of sound bites. They fall into three distinct categories: 1) you have, 2) you can expect, and 3) you should.

“You have idiopathic pulmonary fibrosis” was what I heard on Jan 31, 2017. “You can expect to have two to five years to live” following this diagnosis, he said. Today, I can still hear my diagnosis and life expectancy like they were yesterday.

It was the third category, “you should,” that surprised both my wife, Susan, and me. The full sound bite was “you should get your affairs in order.”

Sound advice

More than 10 years earlier, I’d created a trust along with an advanced medical directive to ensure my desires for the distribution of my estate, along with resolving any questions about my medical care.

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While this is adulting at its finest, it had been more than 10 years since I’d reviewed the documents in earnest. They desperately needed to be updated. These were living documents that needed to be updated on a regular basis while I was still living.

During the preceding 10 years, my employers had changed, some homes had been sold, and my home for our retirement years had been acquired. This was my responsibility, and I hadn’t maintained it properly.

On a positive note, revising both the trust and the advanced medical directive were not daunting tasks. It wouldn’t have been an issue at all had I taken the time to review these documents on an annual or even regular basis.

Final wishes

I wrote in an earlier column that before my bilateral lung transplant in July 2021, we were certain I was not going to make it to Christmas. Planning my own final arrangements was a very sobering experience.

Much of the information required for making those final funeral arrangements was on a form that offered a menu of options. I plan to be cremated, eliminating the need to select a coffin. There’s an option to simply rent a presentation casket to be used during family visitation and a funeral.

Other choices had to be made as part of the process, including selecting a final resting place. While Susan and I made these choices together, it wasn’t lost on me that this was a future burden that Susan wouldn’t have to deal with when I passed.

We formally executed the final wishes documents with the funeral home during the height of the COVID-19 pandemic. My youngest brother, Wayne, who has worked in the funeral business for his entire adult life, assisted us in selecting a funeral home. He reached out to the home in advance of us signing the final documents and paying for the services in advance. He had alerted the representative about my condition and that I was immunocompromised.

The representative brought all the documents to our home. When he got out of his car, he proceeded to don a Tyvek jumpsuit and mask before approaching. The gesture was greatly appreciated.

Back to the present

With my transplant, I was gifted another chance to continue living. I’m now more thoughtful about ensuring these documents are maintained. The need for them and my final arrangements is no longer looming. I’m glad they’re current so that when the days come when they’re necessary, they’ll take some of the stress away by providing my wishes. It allows me to make every breath count.

Note: Pulmonary Fibrosis 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 Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.