Facing Death: Finding Dignity, Hope and Healing at the End

8 min Article
Dr. Jim deMaine shares the powerful introduction to his new book.
Facing Death: Finding Dignity, Hope and Healing at the End

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.”

I continued to listen as he explained his feelings and fears. He didn’t appear significantly depressed, but I needed to check. “Larry, do you feel sad or hopeless?”

He replied, “No, just mad as hell that I can’t get better.”

I felt that Larry had very natural “situational depression” from his illness and I suggested a low dose antidepressant, but he refused—perhaps because of the medication’s unpleasant side effects, perhaps because he did not think he was particularly despondent.

So we discussed options for what would now be called aggressive palliative care. “Larry, look I’m not Dr. Kevorkian, but there are options. Other than the medications and oxygen you are using to help you breathe, the best drug at the end is morphine. This drug takes away the suffocating feeling, treats any pain, sedates you, and produces euphoria.”

“Well, Doc, that’s what I want.”

“Ok, but there’s a catch. Morphine would likely speed up your death by several hours -- or even days. If your aim is to relieve suffering, drugs like morphine will work. But they can hasten death.”

Larry was resolute. “Look, I just want to die comfortably,” he said. “I know I’m dying so what’s a few less hours or days?”

Later, when recounting our discussion to a few of my colleagues, I got a mixed response. One said, “There are situations you just can’t jump into. This is too close to assisted suicide.”

But another felt patients should have the right to ask for relief from suffering. “After all, since you can’t cure him you are at least obligated to relieve his intolerable symptoms.”

A religious scholar friend had a broad view. “Your patient is suffering, and you have tools to help him. I don’t think it’s wise to abandon him in his time of need. He’ll be transitioning from this life to the next soon enough. Why extend his needless suffering?”

I tentatively agreed to comply with Larry’s wishes whenever his next inevitable flare-up occurred. But I insisted that he try to get buy-in from his two sons, one an attorney and the other a veterinarian. A week later I conferred with Larry and his sons who agreed with their dad’s plan. And then we waited.

Seattle gets dark very early during the Christmas season, and this is when my pulmonary practice always seemed busiest. Pneumonias were at a peak. New lung cancers were constantly showing up. The sad stories were relentless. Every day, my anger at tobacco companies flared hotter. But my spirits were buoyed by a significant skirmish we’d recently won. It was 1983, and smoking finally had been banned at my hospital. Prior to that, doctors puffed on cigarettes while making their rounds, and incredible as it sounds today, families smoked in patient rooms.

At dinner two days before Christmas, I got a phone call at home from the ER doctor. Larry had been admitted, and they were preparing to put him in the ICU. I said, “I’m not sure he wants to go there. Please hold him in the ER, and I’ll come see him.”

At his bedside shortly thereafter, I could see that Larry looked awful. “Remember what you promised,” he rasped, his piercing eyes intent as ever.

I reviewed our plan aloud, and Larry nodded. Normally he would have gone to intensive care, but we would bypass that and admit him directly to a medical unit with a do-not-resuscitate (DNR) order.

I pulled the nurses aside and explained the situation. Fortunately, they were senior caregivers, models of caring and competence. They had seen too many cases of CPR used on terminal patients—a violent and jarring experience for all—and they were relieved to be free of that obligation. “Doctor, I’m glad you don’t view death as a failure in this situation,” one said. God bless nurses. They were looking after me!

The morphine drip was started with small supplements as needed. Larry’s sons were there. Larry himself seemed peaceful, and on my drive home I said a silent prayer. I slept well that night. Larry passed from this world at 3:14 AM.

I offer this story as a way into discussing the ethics of offering palliative treatments that likely hasten death. Key to this question is intent. In 1983, when I was caring for Larry, there were no clear guidelines so I had to rely on my own training, intuition, and personal comfort zone. And though various groups have published guidelines in recent years, they are still not completely clear.

What we gave Larry is now called “palliative sedation,” a term aimed at emphasizing the physician’s intent to ease suffering, rather than intentionally cause a patient's death. This kind of sedation differs from assisted suicide precisely because of that one word, intent. This is called the double effect. The intent is to relieve pain even if a secondary effect is to hasten death. Some people deride this distinction as splitting hairs. But in 1997, the U.S. Supreme Court gave strong support for this principle in its deliberations about the constitutionality of medical aid in dying. The thinking in bioethics continues to evolve on this topic.[i]

I was deeply touched by the letter of thanks from Larry’s two sons that came a few weeks after his death. “Dad would love to shake your hand if he could,” they wrote. “He died the way he wanted to. Thanks and God bless.”

Join us each week as we continue this conversation with Dr. Jim deMaine - for Ask The Doctor every Tuesday at 11am PT. 

About the Teacher

Jim deMaine

Jim deMaine

Retired pulmonary/critical care physician. Passionate about advance care planning and having our wishes listened to and followed. Speaker, blogger and writer. Book - Facing Death: Finding Dignity, Hope and Healing at the End.
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