Barbara shared her story in December of 2021.
During my career as a hospice and palliative care nurse — and before that, as a nurse specializing in pain management — I became a supporter of the option of medical aid in dying. Then my husband became terminally ill, and end-of-life care was suddenly more personal for me than it had ever been.
From 1985–2000, I worked for a Catholic hospital in Portland, Oregon. This time span included the passage of Oregon’s Death With Dignity legislation and an increased emphasis on pain management at our hospital. As a nurse leader, pain management was one of my primary focus areas. We made real progress, but there was the occasional patient for whom pain management was difficult. I am still troubled when I think of those patients and see the need for expanded options. If a terminally ill person who is mentally capable wants to relieve pain and preserve dignity, however they define it, they should have the option to request a prescription for a peaceful death.
My nursing career shifted when my husband, Dick, retired in 2000 from his job as a naturalist with the U.S. Fish and Wildlife Service. One day he announced, “I’ve had enough of Portland rain; we’re going to Hawai‘i.” Dick was originally from Southern California and wanted to retire somewhere warm. He built our house on the Big Island overlooking Kealakekua Bay, where you could wake up and look toward the ocean and see if the dolphins or whales were there. Dick loved gardening. He joined the Tropical Fruit Growers Society, and on our one-acre plot he grew 54 kinds of tropical fruit. He also grew orchids and even served as the president of the Daifukuji Orchid Society for a couple years.
Meanwhile, I did home health nursing in Kona. It was so different from working in a big hospital where care was very specialized — now, I was driving around visiting patients in their homes, learning to deal with all kinds of situations on my own. Our home health agency ended up caring for many hospice patients, so our medical director made sure we were all educated and well-trained in end-of-life care. I became a certified hospice and palliative care nurse (CHPN). As in the hospital setting, occasionally I encountered patients with intolerable, unmanageable pain.
We had a good life in Hawai‘i, but Dick’s health began to deteriorate from Parkinson’s disease, heart disease and other chronic conditions. We moved to Nevada in 2017 to be closer to family. In October of 2020, Dick had heart surgery, from which he never fully recovered. But we were still able to go on outings and enjoy doing things together.
In May of 2021, we celebrated our 55th wedding anniversary together in the mountains of Oregon. A couple months later, Dick fell and fractured his hip. He never recovered. The physical therapy team at the hospital tried everything to get him to eat, to feed himself, to stand up, but after 12 days in the hospital it became apparent that he was not going to get better. I decided to bring him home with hospice.
We brought Dick home and placed his bed facing a window that looks out over the eastern escarpment of the Sierra Nevada. Dick and I met as grad students at the University of Michigan. After we graduated and got married, we headed for a summer at the Ancient Bristlecone Pine Forest, where he had a job as interpretive naturalist. We lived in a cabin at 10,000 feet, looking out at the crest of the Sierra across the Owens Valley. Now, in his final days, he could see the crest of the Sierra when it wasn’t obscured by the Caldor fire.
On the morning of August 17, 2021, I could tell he wasn’t going to last much longer. I opened up the curtains, and the smoke and clouds had cleared, making way for the gorgeous view of the Sierra Nevada. It was like we both began and ended our life together looking at that mountain range.
Being the caregiver for someone in their final days, weeks or months is not always easy or beautiful or meaningful. Even for an experienced medical professional like myself, it was sometimes difficult to know how best to provide comfort care to my husband. Was I giving him too much or not enough medication to ease his suffering? I was impressed to learn during this caregiving period that hospice options have broadened, with services and medications that make it possible to keep patients comfortable in most cases. But it can still be difficult for caregivers to use the tools available. That’s why working with the hospice team is so important.
This experience also reinforced for me the importance of having options at the end of life. We do not deal well with death in this country. We don’t want to face it, plan for it or even think about it. We want to deny or ignore it. But families need to have the conversation. And if a terminally ill person wants to preserve personal dignity, relieve pain or have a peaceful death surrounded by loved ones, that should be an option.
Every end-of-life story is unique. To those facing imminent death, medical aid in dying can be a monumentally important option. Even if the medication is never used, having that option can provide comfort to both the terminally ill individual and their loved ones by alleviating some of the stress and anxiety around how much suffering they might face. I hope I get to see Nevada follow my former home states of Oregon and Hawai‘i in making that a possibility.