The following in the introduction to my book, released by Clyde Hill Publishing in September 2020. If interested, I have a few copies available at a discount. Otherwise the book can be found on Amazon and at your favorite book store. Jim deMaine
For thirty-eight years I cared for very sick, terminally ill patients. Their stories—their deaths and suffering—have become part of me. I have collected and treasured the many kind notes that patients and families have sent me, at times crediting me with powers I do not deserve. As I ministered to patients, their loved ones and caregivers, I was part doctor, part teacher, and part spiritual advisor. In a care conference in the ICU, I would often tell a story to help a family understand the crisis their loved one was enduring. I tend to think in stories and found that, through them, families could more easily grasp whatever lesson I was trying to impart. They, like most of us, had not talked much about death and were unprepared for it. But when death lands on our doorstep, do we lock the door or welcome it in? Dying is different for each of us as we enter the unknowable on our own unique path.
Sometimes we negotiate. Larry surprised me during a visit to my pulmonary clinic. “Doc, I want to take you out to lunch. There’s something I want to discuss with you.”
I was a little nervous about the invitation. Larry was a favorite patient of mine, coming across as a bit crusty but a straight shooter. I’d grown to know him well and we often chatted about his former career in sales. I was a bit concerned that he might try to sell me something—and in a way, he did.
We arranged to meet at a restaurant near the hospital, and after some pleasantries, Larry let me know that he wanted to talk about dying.
“Look, I’ve lived a long time and what I’m doing now isn’t really living,” he said. “These flare-ups are torture. I feel like a fish out of water and I don’t want to die that way. My biggest fear is suffocating to death. Doc, I want you to help me at the end.”
Larry was suffering from severe COPD, and his condition was getting worse. He had a piercing gaze that twinkled when he cracked one of his frequent jokes, and he always appeared well groomed. But he breathed noisily and had a dusky color, even with the oxygen flowing through his nasal prongs. Larry was not joking now. He’d just been discharged from the hospital after another crisis, with severe wheezing, gasping and coughing due to infection. His waterfront home, where he lived alone at age seventy-seven, had become a prison to him.
“Doc, I can’t handle the stairs, go crabbing, or even lean over to dig clams. This is the pits.”
“How about hiring live-in help or moving to Seattle to be closer to your family and medical care?”
“No way,” Larry said. “I don’t want to move and bother my sons or have some stranger in my home!”
Larry’s COPD was near end stage. He had the classic findings of distended neck veins and a barrel-shaped chest. His lungs were over-expanded, and his diaphragms were moving poorly. There was a trace of swelling in his legs. His blood showed elevated carbon dioxide, and he couldn’t breathe well enough either to maintain oxygen or expel CO2. Chronic respiratory failure due to longstanding tobacco use was his diagnosis. He had finally kicked the habit five years earlier, which helped some, but not enough. Looking at him, I could see the side effects of prescribed steroids — the “moon face,” bruising of the arms, muscle wasting and weakness—all scourges of chronic use of prednisone.
We talked about ventilators to support his breathing and other kinds of ICU care. “No,” he said. Larry was clear; he wanted to be in control. “Look Doc, all I want you to do is promise me that you’ll help me at the end.”