End-of-Life Choice, Palliative Care and Counseling

Reflections on life, death and a lethal dose of Seconalby Jay

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By Tahlia Honea

ROCKPORT — Spreading throat cancer gave Robert Good a choice: Use the lethal pills his doctor prescribed him or let the cancer run its course.

In the fall of 2009, Good’s doctor told him the cancerous lump in his neck would slowly strangle him to death. The illness was terminal and would likely kill him within six months. First he would
not be able to swallow, then he would wait until the growth took his last breath.

“It would be a horrible death,” Good said last August at his home in the tiny town of Rockport, nestled in the North Cascades Mountains.

Radiation and chemotherapy hardly slowed the cancer, which was first diagnosed in 2007. Doctors declared it terminal in November 2009. By the next fall, Good felt his health slipping by the day.

“It hurts like a bad bruise right there,” he said as he touched the left side of his throat. Though the growth could hardly be seen, it felt like a rock under the skin.

He was prepared for the worst. He took a small measure of comfort in the bottle of legally prescribed Seconal that he had close by. Those pills, he hoped, would help him when he decided it
was time to die.

In the last months of his life, the effects of Good’s illness showed in everything from his walk to the way he spoke: Some weeks his voice was high and squeaky as the tumor pressed on his vocal cords; other times it had the deep raspy rattle of a lifelong smoker gasping for air.

The once stocky man with a full beard quickly lost inches around his waist. His jeans sagged, and he needed suspenders to keep them secure. His light brown ponytail and beard were thin.

Formerly energetic and always up for adventure, Good spent more hours in his recliner. Near his feet was his constant companion — a bright yellow can of loose tobacco. Good has no doubt his smoking habit, which began at age 15, caused his cancer.

Good, 60, was more than familiar with the dying process. He had watched his life partner, Eve Syapin, 59, care for her dying mother in the couple’s one-bedroom home for the past 10 years,
aiding the bedridden elderly woman in every basic bodily function — spoon-feeding her, turning her to prevent bed sores and wiping down her failing body.

“Robert would hate to be where mama is,” Syapin said.

“I don’t want the drama,” Good would say.

Having a choice

After the terminal diagnosis, Good asked his doctor about the option of dying with the help of carefully prescribed pills, what’s known as physician’s aid in dying.

Just the year before, in November 2008, Washington voters passed the Death With Dignity Act, and it went into effect March 5, 2009.

The law allows doctors to prescribe fatal medication to terminally ill patients who request it.

Washington doctors have written 152 prescriptions for those medications to terminally ill patients, according to a Department of Health report that tracked the data through December. At least
119 patients prescribed the medication have died — at least 87 by taking the drugs and 22 without.

Numbers specific to Skagit County were not available through the state Department of Health or local agencies.

The Washington law is the second of its kind. Oregon passed a similar measure in 1994, which took effect in 1998 after protracted legal battles.

Physician aid in dying is also legal in Montana after a 2009 court decision. The debate over physician assisted death continues in other states, such as Vermont.

Good said he wanted the medication, which he dubbed “the final dose,” on his shelf when he started to have trouble swallowing. He vowed to cling to life until the last possible moment, while knowing he could end it. He also said he might not use the pills.

“I think it’s a person’s right to decide their demise — their fate if they’re in a situation like this,” Good said in early February. “I know people that have found out they have cancer and gone out and blown their heads off. That’s pretty messy, and they go down as a suicide, and that’s not right because that’s a terrible thing to have on the end of your life.”

Death With Dignity is not, under the law, considered euthanasia or assisted suicide. The cause of death listed on a patient’s death certificate is the terminal illness.

“Death With Dignity gives an individual the dignity to go knowing he hasn’t done anything wrong,” Good said. “He alleviated his pain and suffering and maybe shortened his life, but when you get to the point where there is no quality — what’s the point?”

A miner and a handyman

Good was born in Sacramento but grew up in northwestern Washington with an adopted family.

As a young adult, he moved to Seattle with high school friends and worked as a handyman.

After a stint mining the streams of southern Oregon for gold, he found his way to Sierra Leone, Africa, in the 1980s where he was a supervisor in gold and diamond mining. But Good couldn’t stay away from the Northwest and came back to make a living doing carpentry and handyman work.

During his years as a miner, he met the love of his life, Syapin, and the pair have since been inseparable. They were attracted to each other’s sense of openness and adventure.

The couple doesn’t pretend they’ve lived a reserved lifestyle; joking during an interview, they described themselves as “rode hard and put away wet.”

They hinted at their wilder days when Good helped organize Rainbow Gatherings — annual week-long shindigs in national parks focusing on peace, love and unity. In the 1970s, Good lived in a commune in Marblemount where he would host threeday pig roasts.

But their lives more recently became absorbed in caring for Good, as well as Syapin’s mother, who has been suffering in the late stages of Alzheimer’s and bedridden in their home for the past five years.

Syapin is puzzled by the irony of her mother’s lingering life, bedridden and confused, and her partner’s life cut short.

“Why can’t she go instead of him?” she asked.

Treatment

After Good was diagnosed in 2007, he received radiation and chemotherapy.

“I felt like my throat was burnt,” he said. “It knocked me down to the lowest physical point in my life I’ve ever been.”

Once during radiation treatment, he remembers tasting and smelling burning flesh.

“It’s probably not what was happening, but that’s what it seemed like,” he said. “I remember thinking, ‘What am I doing sitting here subjecting myself to this?’” he said. “It was weird. It was not something I would do again. It’s not something I would wish on anyone.”

Doctors suggested an invasive operation with the risk that Good might not be able to eat or talk again.

He opted out. In fact, he didn’t want any more chemotherapy or radiation.

“I wasn’t going to subject myself to anything more,” Good said. “And I definitely wasn’t going to have that stupid operation they were talking about.”

For Syapin, it was the lowest point of the illness. She felt angry that Good didn’t want to fight to stay with her.

“That was the hardest part,” she said to him. “That period of time when I realized you weren’t going to do anything, and I accepted it.”

Preparing for the end

Doctors suggested Good join hospice, an end-of-life service aimed not at healing patients, but limiting their pain in their final months. Good’s hospice nurse, Doug Robinson, said it’s often hard for doctors to predict when throat cancer will take a patient’s life, which could explain why Good lived a year past his six-month prognosis.

After realizing his life was nearly over, Good slumped into a deep depression, barely leaving his house.

But Good, who has lived most of his life in pain from lingering back injuries, found peace as doctors relieved his symptoms with morphine and oxycodone. Each day, he would take an excursion out of the house to enjoy morning coffee with a friend in Concrete, take walks in a nearby state park or even take a trip to the nearby Sauk-Suiattle Indian Tribe’s pow wow.

“I’d really forgotten what it was like not to be in pain,” Good said. “When I was finally out of pain, it was like night and day. It was like, this is what it’s like for a normal person. It was amazing.”

Always a realist, Good knew the feeling wouldn’t last. He wanted to be prepared for what he had been told he might have to endure.

Good knew about the new state law allowing lethal prescriptions for terminally ill patients. He had voted for the law both while living in Oregon and later in Washington.

He started the process of getting the prescription, which took about three weeks. He planned to use it once he had trouble swallowing.

Good and his doctor discussed the drug, Seconal, that is commonly used. The drug induces sleep, and death usually follows within about 25 minutes.

The Seconal used in physician-assisted death comes in the form of 100 orange capsules, which must be individually opened and mixed into juice or a soft food such as applesauce. The patient must ingest it quickly as not to fall asleep before taking the entire prescription. Under the law, the patient must be well enough to self-administer the drugs.

Good once opened a pill to sample the powder.

“It tastes terrible,” he said.

Good signed papers asking for the prescription, as did his doctor and a second physician from hospice. After a legally required second consultation with his doctor two weeks later, Good filled the prescription at the pharmacy.

The doctors questioned Good to make sure he was mentally competent.

“They both agreed, I wasn’t just depressed,” he said.

For months, the prescription sat on the shelf among his slew of other medications. Good said he felt liberated by the pills, feeling that cancer wouldn’t necessarily have the last say.

Some relatives didn’t feel as comfortable with his choice.

“I think the whole idea of him doing away with himself — I can’t even say this without crying,” Syapin’s sister, Gaile Marie, said, then stopped, her speech broken with emotion. “It’s too much to ask my sister to accept.”

“I think it would be hard,” Syapin said. “But I have no choice. One way or another, it’s going to happen, and I’d rather see him go in peace.” Good offered his own opinion. “I think I’m a chicken shit,” he said “A big coward, and that’s why I have as an option.”

Last days

On the morning of Feb. 25, both Syapin and Good sensed the end was near. “I won’t make it through the rest of it,” Good said, as he set down the remainder of his can of tobacco. His hands shook as he rolled his cigarette. “I’m trying to make it until my birthday (April 18), but Eve doesn’t think I’m going to make it that long,” he said, as he smoked on his porch. Snow covered the ground, but the bright winter sun cast a hint of warmth on the day. Earlier that day, Good had passed out, crashing into a wood stove. “Total sensory deprivation,” he said. “That was the strangest feeling in the world — just nothing. That scared me. I didn’t like that at all. I had absolutely no recollection of where I had been or who I was.” He would drift off into a deep sleep mid-sentence, then awake startled. “Did you just push me?” he would ask. More restless than usual, he wandered around the house with his walker, saying he needed to finish his projects and talking to things that weren’t there. He was experiencing a jolt of energy doctors say some terminal patients gain in the days before death.

When Good sat down, he would moan from back spasms. The mix of fear and pain was evident in his eyes.

Good seemed to improve for parts of the day as he and Syapin ran errands and visited relatives. He bossed Syapin around, gently complaining about her driving too closely to the car in front of her, or driving too fast — all with the loving sense of a couple who has spent 26 years together. Syapin was learning to drive Good’s car — it would be hers.

“Do you need gas?” he asked, looking at the fuel gauge. “Yep. I’ll leave you with a full tank of gas if I can.”

“I’m not worried about it,” Syapin replied.

Death

The next day, Good took a final turn for the worse.

“It was a struggle,” Syapin said. “A struggle breathing, a struggle to move, to talk.”

Good drifted in and out of consciousness, telling Syapin he loved her, making small kissing gestures and apologizing for his condition.

“I’m so sorry we’re here,” she recalled him saying. “I’m so sorry that it has to be like this, and I told him, ‘You don’t have to be here. It doesn’t have to be like this.’”

Syapin was talking about the “final dose.”

“He said ‘Do you want me to? I will if you want me to,’” she said. “And I just looked at him and said, ‘It’s not my choice.’”

Good finally made his choice: to die naturally.

“‘The doctor is right. It doesn’t hurt to die,’” Good told Syapin. “‘It’s OK.’”

Just after 4:45 p.m. on Feb. 27, Good collapsed forward in his chair.

“I went over there and sat him back up, and I could tell there was blood on his nose,” Syapin said. “But he was still breathing. You could hear it. You could see it. So I just held him up, held his head in my hands and told him I loved him and to let go. And you could tell. I could see. I was watching his breath, and it kept getting a little shallower and a little slower. Then his mouth opened … he did that little fish-out-of-water thing — little bubbles going three times.”

She stuck her tongue out three times to mimic him.

“His eyes rolled, and then his eyes closed,” she said.

Syapin paused as she looked at Good still sitting in his recliner, his head tilted to the left and all the wrinkles of pain gone.

“Then he went real peaceful,” she said. “I could tell. I could tell as soon as he was gone. I could just see it. It was like, there he goes. There he goes. He’s gone.”