A Good Day to Die Living the End of Life Option

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Story and photos by Kathryn McKenzie

Saturday, September 2. The day was hideously hot, the hottest day of the year in a record-setting heat wave, and yet we were huddled in a stifling little house where death was imminent. Warren Church, my father-in-law, had been dying for some time now. He’d had enough of life, and he was ready to take the next step. At age 87, he had lived an enormous life of great achievement. But here he was, opting to hasten the inevitable.

And so my husband Glenn and I found ourselves in a situation we never expected: preparing his father for death. Or perhaps Warren was preparing us for death.

“It’s surreal,” we kept saying to each other, weeks before and weeks after. It still seems that way, months later.

Californians who have a terminal illness are now able to legally end their lives, so long as they are of sound mind, have the proper paperwork, signatures from two doctors, and the ability to hold and ingest an overdose of medication with their own hands. The California End of Life Option is relatively new and, for most Californians, uncharted territory.

Warren’s hospice nurse had never before had a patient who chose to use the End of Life Option. For his primary doctor, Warren was only his second case in more than a year. The act was signed into California law in June 2016 and since then only an estimated 500 people have used it.

Warren Church was a man of many interests, but chief among them was his lifelong passion for politics. A former Monterey County supervisor in the 1960s and ‘70s, he continued to serve on a variety of boards throughout his life, even up until a few months before his death. Through it all, he kept abreast of what was happening at the county courthouse, in Sacramento and in Washington, D.C. He was well aware of the End of Life Option Act as it progressed through the state legislature and he celebrated its passing.

“So did you hear? Jerry Brown signed the End of Life bill,” he remarked to me last June when I was at his house.

“That’s good,” I said.

“Yes,” he said, “now I can use it when I need to.” I smiled and nodded, not really knowing how to respond.

There was no doubt that Warren had thought about death and was comfortable with making it a do-it-yourself project. He often spoke to his son about ending his life early if he was no longer able to care for himself. Sometimes he joked about it. Once, while passing the Moss Landing cemetery, where the Churches have a family plot, he announced that we could stop and leave him there.

I didn’t quite know how to take that. Like most Americans, and probably the majority of people throughout the world, I don’t care to think about death. It freaks me out, to be honest. And yet, death comes for us all. When we consciously avoid the subject, we are foolishly in denial — and yet that’s what we humans tend to do.

Warren sure seemed comfortable with it, as though it was the natural conclusion to life. And because he was so frank about death and his own demise, he spoke of it frequently with Glenn, his only child, and his grandsons Jackson and Kristopher. So when the time came, Glenn and his sons were more accepting of his father’s decision than most of us.

Warren was a tough old bird. Born a few days before the Great Depression, raised in poverty, as a young boy he sold honey and popcorn door-to-door with his parents in the Alisal, where Dust Bowl migrants had settled. By the time he was a teenager, he had saved enough money from side jobs to buy a piece of property for $100, which he then turned around and sold for $200. He continued to buy and sell numerous pieces of real estate, including several Christmas tree farms in Monterey County and beyond. His career was interrupted for a bit by the Korean War, where he earned a Purple Heart when shrapnel creased his shoulder.

While Warren was a well-regarded and effective county supervisor for a dozen years, he was also a well-known pioneer in the local choose-and-cut Christmas tree market, operating from his ranch on Hidden Valley Road.

Always active, if he feared anything, it was moldering away in a bed, infirm and waiting to die. But that’s where he found himself during the final months of his life.

A series of health issues — and his wife’s dementia — had taken their toll on Warren during the past six years. Glenn’s stepmother Nadine was sent to live with her daughter in the Bay Area when it was apparent that Warren couldn’t care for her. After being diagnosed with a heart arrhythmia, Warren moved out of the larger house, Glenn’s childhood home, on his North County property and went into a smaller one next door. Glenn and I moved into the bigger house. It was an ideal situation: Warren had his space and we had ours, yet we were within shouting distance if he needed us.

Then it seemed to be one thing after another. He had difficulty recovering from gallbladder surgery. He was weak, struggled to walk. Cataracts and a burst blood vessel impeded his vision. The eye problems lingered and they were aggravating.

It got so bad that last year, for the first time in more than 50 years, Warren didn’t greet customers on his Christmas tree farm during the holiday. He couldn’t put in an appearance. His long-time customers noticed, but we didn’t know what to tell them.

Before our eyes, he was literally wasting away to nothing. The medical term for this condition is cachexia, which is also known as “wasting syndrome.” In fact, Warren was turning skeletal. His cheekbones abruptly came into sharp relief; his arms and his legs were as slender as oak twigs. The ailments left him in serious pain and impeded his quality of life.

We arranged for 24/7 nursing care. We took some of the shifts ourselves. We hauled in necessary equipment — a hospital bed, a walker, a portable commode, a wheelchair. Hospice care was summoned, and a nurse showed up several times a week to make certain Warren was comfortable.

Warren could not walk or stand without assistance, and was dependent on his caregivers for everything. He wore adult diapers. He hated it. Discomfort and dependence on others would likely follow him until the end of his days.

“I’m useless,” he would say, disappointed and frustrated with his deteriorating body. “Useless.”

At this point, I had accepted the decision fully. It’s bizarre to think about planning for someone’s death, but once we were talking about it in a concrete way, and not in the abstract, I came to realize that we were carrying out Warren’s real wishes.

Choosing to end one’s own life has always been controversial, though Americans are increasingly more open to the option. A recent Pew Research Center study found that 70 percent of those surveyed agree that patients should have the choice if the circumstances are right. Only 22 percent of the respondents believed life should be extended no matter what.

Since Warren’s death, we expected negative comments about the manner of his death, but only heard of one person who disagreed with the decision — out of probably thousands who knew him or had read about his use of the End of Life Option in the local newspapers. In fact, some of Warren’s conservative and religious acquaintances expressed approval. “Well, I think that’s something I might want to do,” one elderly neighbor told Glenn.

The death with dignity movement picked up steam in the 1990s and 2000s. Oregon passed its Death With Dignity Act in 1994, and other states followed. Currently, there are five states, plus Washington D.C., which allow medical aid in dying.

California’s law, AB15, was co-authored by Sen. Bill Monning, D-Carmel. (Coincidentally, Monning and Warren were long-time political friends and allies.)

In the parlance, medical aid in dying is not considered “suicide,” and its proponents abhor the use of the word when discussing end-of-life options. Rather, it is thought of as accelerating an inevitable death following a period of ill health. Groups like Death With Dignity and Compassion & Choices prefer to call it physician-assisted dying, or medical aid in dying.

In the weeks before his death, I talked to Warren numerous times about the choice he was making.

“I’ve always been a believer in it,” he told me. “I always felt if I couldn’t function in life, I should have the right.”

He said he would have much preferred remaining healthy. He would have liked to be out working the farm, he said, or get involved again in local politics. “I kind of dropped out of all those things,” he lamented. “If I had my health, it would be easy to step back into these areas.”

But he did have a last political act: publicizing the manner of his death. He made it clear he wanted his death to be an example for others, a chance to advocate on behalf of the California End of Life Option.

We quickly discovered that it’s not all that easy to end one’s own life through the End of Life Option.

First of all, we needed to find two doctors who would sign the paperwork — one to get the ball rolling, the second two weeks later to issue a second opinion. Not a lot of doctors are willing or able to participate, or to make house calls. Glenn eventually found a couple of Monterey County physicians who specialize in End of Life, but finding the first one took numerous phone calls. The second was a family friend.

The first physician, a compassionate and personable gentleman, examined his patient, looking to see if Warren was suffering from something that would kill him within six months, and then asked a series of questions to find out if Warren understood what the End of Life Option meant. The doctor also had to determine if Warren was being coerced into taking the route he chose.

Warren’s answers were clear and definite. And the doctor determined that Warren’s extreme unexplained weight loss was something that was in itself a terminal illness. The weight loss continued at a rapid pace, even though we fed him an inordinate amount of pie and ice cream along with his regular meals. You wouldn’t believe how much pie we went through. The doctor prescribed steroids to improve his appetite, but the weight loss continued.

The first doctor, satisfied that Warren was an appropriate candidate for the End of Life Option, signed the paperwork. After the two-week period required by the California legislation, we summoned the second doctor, an old friend of Warren’s.

Warren passed the second test. His doctor friend was satisfied that Warren was ready to go, and they had an emotional farewell.

The next order of business was shopping around for a pharmacy that would fill the prescription. In addition to giving patients the right to die, the law also gives pharmacists the right to decline to be involved, so Glenn started calling around. All of the pharmacists he talked to seemed confused, unfamiliar with the End of Life Option. Asking for that much Seconal was out of the ordinary. One of them asked Glenn, “How much does he usually take?”

Glenn eventually settled on CVS, because it was acquainted with End of Life Option and even had a companywide policy on it.

The shocker was the sticker price.

The original estimate for that much Seconal was a whopping $3,800. The cost was eventually reduced; the doctor determined that, due to Warren’s weight loss, he wouldn’t need that much medication. Still, cost of the drugs alone can reach up to $5,000 for some patients, according to Death With Dignity.

Unlike the morphine or the many other meds that Warren was prescribed in his final days, Medicare doesn’t cover life-ending barbiturates, so it was a cost out of pocket. We were lucky to afford the medications, but I still wonder how many families are precluded from End of Life Option because of the cost.

The next couple of weeks were rather sweet. Even as his body was deteriorating, Warren’s mind remained sharp. Friends and family dropped in often. He’d sometimes receive his guests in bed. But if he was feeling up to it, we’d haul him up on a chair so he could sit with us.

We reminisced and laughed, and he told stories about the old days: Surviving on pie for breakfast when he was a student at Cal Poly; personally digging a trench, while he was a county supervisor in 1966, so that water could get to Royal Oaks County Park in time for its grand opening; fixing cars with his big brother Royal, who died many years before.

Diet was no longer a consideration. Ice cream. Pie. Cake. The kitchen always seemed to be abundant with the unhealthiest of sweets. His guests brought more, and he gobbled a lot of it. I never saw anyone enjoy so much pie.

That was a golden period for Warren and the family, and it lasted about a week and a half.

Abruptly, his bladder problems reappeared. He was in pain. A catheter had to be inserted and a urine collection bag was attached. Warren turned inward, seemingly angry about everything.

“I know my rights, and I have the right to die!” he demanded one morning, when I arrived in his room with butter and eggs for breakfast.

He was obviously ready to go. But we had to wait a little longer.

Glenn called the primary doctor and asked for the prescription. It took the pharmacy three days to receive the shipment of Seconal, but to us it seemed much longer. Warren was miserable and in obvious discomfort, and he was humiliated that he had lost his sense of privacy in the most private functions. But he resisted the morphine prescribed by hospice because he knew the state law required him to be of sound mind when carrying out the option.

Glenn began to fear that something would happen — a heart attack or a stroke — that would prevent Warren from being able to take the medication. If Warren was no longer conscious, he would be unable by law from carrying out his final wish. If he was physically incapable of performing the task — if he couldn’t raise the medications to his lips without help — the law prevented anyone else from doing it for him.

Those final few days were dreadful.

On September 1, Glenn picked up the prescription at the Prunedale CVS. He ended up comforting the pharmacist, who visibly shaken when she learned what all the Seconal was for. She was supportive, but it was emotional for her.

The next day, we prepared ourself for the tasks at hand. The thing is, you can’t just swallow 50 capsules. So two caregivers, who happen to be neighbors and longtime friends, took the job of opening each capsule and dumping the contents in a cup.

The house was hot and still, and the end was near.

While the caretakers fussed over the capsules, mixing the powder with a glass of orange juice, Warren said his final goodbyes.

His grandson, Jackson, traveling in France, called from a spot near the Eiffel Tower. He said he had a bottle of wine in hand, ready to toast Warren in his final moments. We wept as they spoke.

We moved Warren to a comfortable spot in his bed, got him situated so he could easily ingest his orange-juice elixir, said more goodbyes, and brought him the cup.

But even then, we had been warned of potential problems. The doctor had told us that Warren, now extremely frail, would have to swallow the potion whole in two minutes, or the drug might not be effective.

The primary doctor tested a tiny dab, and reported the potion to be incredibly bitter. We were concerned that Warren might not be able to swallow it all.

But  Warren chugged it down, like an old stoic soldier, in a couple of gulps.

“It’s not so bad,” he said.

Glenn gave him another large glass of pure orange juice, without the medication, to wash away the taste. Warren gulped it down with the same gusto as the earlier glass. “You don’t have to drink all that,” Glenn told his father as he reached to take it away. But Warren finished it off, making one last ironic joke: “I hear orange juice is good for you.”

We all laughed, but it seemed unreal, laughing as a loved one was slipping away.

A few minutes passed and Warren became visibly drowsy. He caught another grandson’s eye. “Kristopher, you’ve done well,” he said, his last words.

He quickly fell into a deep sleep. Then he became unconscious.

We thought, in his frail state, that he would die within a few hours, but he hung on for more than eight. It can take as long as 30 hours to die from this kind of overdose. Just as when people died at home in centuries past, we ministered to him, placing cool cloths over his body to alleviate the extreme heat. The temperature hovered around 100 degrees in the house, and a fan only helped slightly.

We stayed with him all that day and into the evening. The hospice nurse finally went home; the doctor had left long before that. Warren drew his final breath at 7:34 p.m. with Glenn and Kristopher by his side.

The cause of death would be listed as cachexia, the wasting syndrome.

Warrior cultures in the Americas used to say, riding into battle, “Today is a good day to die.” The phrase expressed a warrior’s desire to die a brave and honorable death. The day of Warren’s death truly was a good day. It was the day he chose, and it was exactly as he wanted it.

 

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