Update: the Maine Death with Dignity Act passed in 2019.
My wife, Karen, passed away from liver cancer in October 2018. When doctors discovered the cancer several months earlier, it was so advanced that she had no chance of recovery. What started as a mass in her liver had metastasized to her spine, lymph nodes, and kidneys. Hospice was her only option, but even the best of care providers could not provide her the comfort and control she sought at the end.
Joy and Humor
Before she got cancer, Karen was a smart, curious, and very funny woman. During our more than 30 years together, I was always amazed by how quickly she could devour books and delighted by her sense of humor. When we first started dating, we would challenge each other to see who could provide the funniest take on any situation. Sharing life with her was a joy.
A Grim Discovery
The cancer developed very gradually. At first, Karen simply said she felt out of sorts, with pain between her shoulder blades and discomfort in her digestive system. Initially she chalked up the shoulder pain to the fact that she’d been doing a lot of ironing. She had an endoscopy done to address the stomach pains and received treatment for gastritis.
Her primary doctor decided to do an ultrasound to rule out any additional problems. She discovered a large mass in Karen’s liver. A subsequent MRI showed the mass was malignant. The news from an oncologist was even more grim: the cancer had metastasized to her spine and organs throughout her body.
We all deserve the right to die on our own terms, in our own time.
A Wish to Die with Dignity
Following her diagnosis, Karen was very clear that she wanted to die with dignity. We talked a lot about Vermont’s assisted-dying law and how, if she’d been stronger physically, we would have considered moving there to allow her to access medical aid in dying. She lamented the fact that our home state of Maine, whose residents pride themselves on their independence and autonomy, did not allow terminally ill individuals control over their final days.
Karen was interested in getting involved with clinical trials and exploring her options with chemotherapy. She had become too ill to qualify for participation in the trials, and her oncologist warned her that any treatment she undertook would be painful and toxic. She decided that the decline in quality of life she would experience with the treatment was not worth prolonging her life.
In the end, there was nothing anyone could do but help make her as comfortable as possible as she approached her final days.
From Hospital to Hospice
Her oncologist referred her to palliative care. She chose to spend her final month in hospice. The staff was wonderful and did everything they could to help her manage her nausea and anxiety. Nevertheless, her time there was horrendous.
Her preferred method of hastening her death was voluntarily stopping eating and drinking (VSED). She couldn’t keep her oral medications down, so her care providers gave her doses via an IV. Always petite and thin, Karen lost more than half her body weight as she deteriorated. By the time she died, she weighed only 50 pounds.
A Silver Lining
The one silver lining in my wife’s final days was the time we spent having good conversations and good cries together. I know many people don’t get the opportunity to have meaningful conversations with their dying loved ones at the end. I will always be grateful for that time, however painful it may have been.
Since her death, I have continued to care for Karen’s 93-year-old father, who has severe dementia. It is a lot of work, but it has given me a purpose and allows me to do something I know she would have wanted. I promised her that.
Keeping a Promise
I am also a volunteer signature gatherer for Maine Death with Dignity, a grassroots political action committee working to place an assisted-dying measure on the state ballot.
I will continue to support Maine Death with Dignity’s efforts until we succeed in allowing all qualified terminally ill Mainers to have choice and control at the end of life.
I promised Karen that I would do whatever I could to help get the measure passed in Maine. Being involved in the efforts to bring death with dignity to Maine is something I do in her honor.