In April of 1999, my husband Rick was diagnosed with terminal lung cancer. In November, he exercised his right under Oregon’s Death with Dignity Act to end his life on his terms. People have asked how I handled honoring my husband’s wishes. The short answer is: it was his life, his death, and thus his choice. But of course, that doesn’t express the complexity of the process dying becomes for a person with a terminal illness.
We’d talked about the issue in general terms after the death of my mother in 1996. Despite a sympathetic doctor, she died in pain and struggling for breath. We agreed we’d prefer to control the conditions of our own deaths. We’d talked about it again during the various debates and publicity around the two votes on Oregon’s law. We felt the same and agreed on all related points.
Then, he developed a cough that wouldn’t go away. When we got the final diagnosis of metastatic terminal lung cancer in early April, it left no room for doubt or hope of something different and less final. His first words were, “Now we are going to Alaska.” (Alas, we never made it.) His next words were “I will be using the Oregon law” or something to that effect. I had expected that, and accepted it without question, although it still had little real meaning beyond the philosophical at that point.
We were fortunate our son and both our families supported his decision—with some regret and a few reservations—but without argument or complaint. He never told his mother of his plans and at his request, I never explained the real situation after the fact, but his sister knew and understood, and agreed with his choice. My family supported me throughout the process.
As the summer deepened, I contacted an organization that helped patients exercise their rights under Oregon’s law. The law had gone into effect only two years earlier, so everyone was a little new at it, but they provided wonderful support and counseling to me. Rick didn’t care to talk to anyone. He was a deeply private person, and remained true to that to the end. He left it to me to find out what to do, and how to manage. I did so, both as his proxy and for my own education.
By mid October, the doctor suggested it was time for hospice. We were able to keep Rick at home. He made his first request, followed by a briefly worded written request, and the final verbal request in early November. His oncologist had never received a request before, but fortunately, he was reasonable and sympathetic. He agreed Rick was of sound mind, not depressed, and definitely terminal. He wrote the prescription on a cold, rainy Friday in early November, and I drove across town to the only pharmacy willing to fill it at the time.
Rick and I talked about when and how he’d decide whether to use his prescription. He said, somewhat sadly, he thought he’d be a lot sicker when he’d be making that decision. I somehow found the words to tell him he was in fact a lot sicker than he thought. He was having trouble with his voice and with swallowing. He often lost words or used them seemingly at random. He woke up with blinding headaches from a growing brain tumor. He couldn’t walk on his own. He’d lost 25 lbs.
When he did make his decision, it was definite and immediate. It had been a hard day and a hard evening, and he was very tired and weak, and Prednisone had deprived him of his emotional control. He was ready to go. I challenged his intention. I told him he could sleep on it, decide the next day. He was sure. He was calmer than he’d been in weeks, almost jovial now the decision was made. The doctor agreed this was an understandable and reasoned decision, made without fear or coercion.
I’ve often said this was a last loving gift we gave each other. He needed the control and the ability to choose, and he needed to know that in the end, we’d have joy and love in the midst of our sorrow. I wanted nothing more than to make that possible for him. I’ve never once regretted it.
The thing is…nobody’s Death with Dignity story will be just like mine. What I’ve come to understand is the dignity people seek in the dying process is unique to them. For some, it’s a time to reconnect with old friends and heal old wounds. Others need a few close friends who can help them address their fears and assess their options. For others, it means focusing on the narrowing possibility of recovery, of beating the odds.
But for every single person who is dying, Death with Dignity means having the right to continue to be the person they’ve always been. There’s no one path that will suit everyone. I’ve often replayed those last weeks, recalling moments where I could’ve, or should’ve, done something differently. It’s taken me years to understand what I did do was what Rick wanted, and to have done anything different would’ve made the process about me, and not about him. To provide real dignity in dying, we must unconditionally respect the unique and inherent personhood of the person at the center of the process.
As I said at the beginning, it was his life, and his death, and he needed the right to decide how it would happen. I’ll be forever grateful to the people of Oregon for making that possible. Now, Washington and Vermont have similar laws. I just hope the other 47 states come to their senses and enact similar laws soon!
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