In tribute to her husband Joseph and everyone who has endured an unnecessarily brutal end-of-life experience, Elaine Pereira shares their story of love, hope, and tragedy while advocating for passage of a Death with Dignity law in Michigan.
My personal advocacy for medical aid in dying launched with the inhumane, ugly, painful death of my husband, Joseph, on March 30, 2022.
Joe’s cancer journey was intermittent until it wasn’t. He had successfully treated prostate cancer with radiation 10 years previous. A few years ago, some areas of non-healing and irritated skin led to biopsies, an outpatient surgery, and topical treatments. He had episodes of sciatica and chronic aches from arthritis in his lower back and hips. But the beginning of the end was in late December 2021.
As his cancer metastasized, it invaded every organ, always several steps ahead of any meaningful treatments. Even though his medications were regularly readjusted, they just couldn’t keep up. What helped moderate the pain one day was completely inadequate the next.
After Christmas 2021, he confessed that he had been having new pain for three weeks radiating from his groin to his lower back. I went straight into “call the doc” mode, but my stubborn hubby balked. Underneath the layers of hope and denial, I knew from the tone of his voice and his spontaneous admission we were headed for some bleak news.
The diagnostic whirlwind began January 2, 2022 – x-rays, CT scans with contrast, biopsies and finally a PET scan. On February 4, his oncologist respectfully told us the worst case scenario: Joe had metastatic biliary cancer without any treatment options.
Joe didn’t seem that surprised. He said repeatedly that our 28 years together were the absolute best and wondered how he got “so lucky.” I, however, was a train wreck. I honestly thought he would be presented with intervention options, not just a quick road to hospice. The oncologist speculated Joe would have several weeks of relative comfort with prescription pain medications, but then he would be in excruciating pain. What do you do with that news?
Our family quickly rallied around him. His out-of-state son and my daughter flew in. I’ll never forget the precious night that Joe and his two sons spent hours reminiscing about everything! Laughing. Sharing memories. Telling stories. It was priceless, but yet, I knew this would be one of the last joyous evenings Joe would spend with his family.
A Promise I Couldn’t Keep
The next day, Joe said to me, “I don’t want to leave you, but I don’t know how much more of this I can take.” I gave him permission to go, which so often seems to be necessary. He was ready. He had been blessed with the opportunity to say goodbye and embrace the most important people in his life! If only his departure could have been that easy.
Joe had a long list of things he adamantly hoped to avoid – incontinence, incoherent communication, resistance of my embrace from flailing, writhing from agonizing pain – and asked me to promise I would make it so. Due to the lack of available treatment and pain-management options, I knew there was no way to promise that he would avoid all of these humiliating experiences.
Joe wanted the option to choose Death with Dignity. But instead, he spent the last six weeks of his life enduring the most inhumane, brutal agony imaginable. The cancer ravaged his body faster than the pain medications could keep up. While the wonderful folks at hospice did everything they could, he only felt brief moments of relief.
A Day Forever Seared in My Memory
On Wednesday morning March 30, 2022, Joe started bleeding from his nose, a brownish red combination of fresh blood and, I found out later, deteriorating cells from his internal organs dying off. Breathing was difficult.
He was in so much pain. And, I was not able to stop it.
I laid down next to him on the bed and kept him as clean as possible, despite the bleeding. That afternoon, he finally took his last labored breath. I was right next to him, holding his hand when he died. There is no conscionable reason Joe had to suffer like this. He deserved a peaceful, pain-controlled end. Everyone does.
I firmly believe if Michigan had the option for medical aid in dying, then I could have kept that promise – and for this reason alone, I will continue fighting for this health care option so people like Joe can avoid the horrendous hell that he lived through at the end of his life.
I will keep sharing his story and advocate for passage of Death with Dignity in Michigan and nationwide until this is a reality for all adults with terminal illness. Please join me by sharing your story too.