No future, no power: Coping with a diagnosis of terminal cancer

October 25, 2018 Opinion , OPINION/NEWS

Reuters photo

 

By

Robert Loewen

 

 

A few weeks after her 95th birthday, Louise learned that her time in this world had run out. Five years ago, she was diagnosed with type 2 uterine cancer, nasty stuff. Light chemo for Louise—not the one that would obliterate her– but that would likely give her only two or three more years they said. It came back in five. Not bad, she thought, she cheated the odds.

 

Louise was ok with dying. Really. Still, she fell into a funk. Two things caused it: no future and no power. In her elder years, Louise found joy anticipating small events: her granddaughter’s opera performances, visits with her great grandchildren, an evening attending a Broadway musical, breakfast with her friend. The cancer took those events away from Louise more quickly than she expected. Same thing with power. Louise always helped others, family members mostly, because she had a gift for reading them and knowing just how to deliver the caring touch they needed. Now, when friends and family entered her room, she could not abide the pity and grief in their eyes because she could not help relieve their pain; she was causing it.

 

Louise was my Mom. Everyone’s fortune depends, in part, on luck. I have never lost sight of my enormous good fortune that I wound up with this amazing woman as my Mother. She devoted her whole life to my brother and me and brought great skill to the task of raising us. I learned from her my whole life, even in her final days.

 

My brother, Ted, has two children, Sora and Young Ted, but Young Ted died when he was still a young man, leaving only Sora. Sora is devoted to Louise. She has a longtime boyfriend, Rudy, who is practically a member of the family. Rudy brought Louise out of her funk by giving her an event to anticipate. During one of their visits, Rudy dropped to one knee and produced a ring for Sora while Louise looked on. Sora said yes. Suddenly, Louise was placed in the middle of joyful events that gave her something to plan for. They scheduled their wedding for September 9 in the courtyard at the assisted living facility where Louise lived. This was a huge source of joy for Louise at the end of her life—a brilliant and caring move by Rudy.

 

As pleased as she was to be at the center of her niece’s wedding plans, Louise was not content. She still lacked power. It bothered Louise beyond words that Sora and her mother, Sung, had not been speaking to each other for some time, and without taking sides, Louise wanted them to make up before she died. I knew that my Mom fretted over this situation, but I had counselled her not to intervene. This was not Louise’s nature. So intervene she did; Louise called Ted to let him know about the wedding, hoping this would break the ice. It didn’t. They were not coming to the wedding. This disappointed Louise. Would she fail in her last attempt to help others to do something she knew was needed?

 

When Ted and I grew up, ours was the house where other kids came to hang out because Louise respected them. Many wayward teenagers found their balance at our home over the years. One of my cousins, Warren, the son of one of my Dad’s sisters, was kicked out of high school and believed to be incorrigible, but Louise took him in. When Warren joined the army, ours was the house where the “bad boy” cousin stayed between tours in Vietnam, and Louise made sure Warren had some quiet time with his girlfriend, Lilly, when everyone else tried to keep them apart because Louise could see that a good woman was just what Warren needed. Warren and Lilly were among the most prominent mourners at Louise’s funeral, praising Louise’s wisdom when it was needed. She died only a few weeks before their 50th wedding anniversary.

 

No one would expect that a sweet old lady like Louise would even consider assisted suicide. But I could see that my Mom’s pain was real when she told me repeatedly, “I just want to take a pill and not wake up.” I could see that Louise was trying to regain some of the power that the cancer had taken away from her; instead of allowing her illness to take her careening on a daily gauntlet of misery toward a predictable end, Louise wished to decide the time and method of that end.

 

I knew that California is one of only a handful of states that has repealed the long-standing laws against suicide for the terminally ill. And perhaps some California legislators who voted for the laws to allow assisted suicide believed they were empowering terminally ill patients like Louise. Unfortunately, this was not our experience.

 

My Mom always loved to eat; no more. The cancer did that. It was a chore to finish a small cup of soup or yogurt. Her morning oatmeal and cup of coffee, which was a pleasure all her life, became an annoyance. Meals were reduced to dietary supplements consumed without pleasure to ensure that enough calories were consumed, and juices remained by her side to spike her blood sugar. When Louise neglected these small necessities, she became too weak to navigate from her bedroom to her living room, where she could watch TV and welcome visitors. Each day, Louise ate less, and she became weaker.

 

The regulations governing assisted suicide don’t work for people like my Mom. They require the patient to consume the life-ending barbiturates without assistance, and they impose a time-consuming protocol, during which Louise became so weak from her illness that she could not comply with this requirement by the time the lengthy protocol had been met.

 

When Louise asked me to look into the assisted suicide law, I was directed by her hospice nurse to a separate unit of the medical provider that ran the hospice unit. This small group was both efficient and compassionate, but their ability to comply with my Mom’s wishes was limited by the regulations imposed by Sacramento.

 

California Health & Safety Code Sections 443 et seq. codifies California’s End of Life Option Act. Excluding the introduction, it consists of about twelve pages of detailed requirements. The key requirements are these: (1) the patient must be examined by two separate physicians over a period of not less than fifteen days; (2) the primary physician examines the patient twice, and the “consulting” physician examines the patient once; (3) all three physician visits elicit essentially the same information—that the patient has the mental capacity to make an informed decision, that the patient is likely to die within six months, and the patient has the mental and physical capacity to “self administer” the end-of-life drugs. Although the statute does not spell out the drug protocol, Louise and I were told that the only end-of-life drug prescribed at the time was Seconal, a well-known barbiturate, at a cost of $2300. The barbiturate consists of 90 pills, which can be broken up by someone other than the patient and the powder poured into a liquid such as apple juice. This creates a thick, 4-ounce liquid. To prepare for consumption of the toxic potion, the patient is given anti-nausea medication, a beta blocker, and something to help the body absorb the barbiturate. All of these must be self-administered.

 

It required about a week before our first appointment with the primary physician assigned to conduct the protocols for Louise. He was a kind man who explained the requirements well. I was worried that Louise might have trouble self-administering the thick potion of Seconal, but the physician was confident during that first visit that she was strong enough to meet all of the criteria. In other words, if the law had allowed Louise to choose her own method of dying after the first doctor visit, she could have done it then and saved herself considerable misery.

 

After the first doctor visit, the law required Louise to wait over a week for the consulting physician to confirm everything the primary physician had learned. By that time, Louise’s health had deteriorated. She could barely manage one or two sips of juice or water at a time. I knew she could no longer self-administer the end of life medications as required by the Health & Safety Code. In fact, she suffered great pain every time she tried to swallow anything. We had to abandon Louise’s wish to be empowered to choose the time and means to die and concentrate on keeping her comfortable. Morphine was her salvation.

 

In the middle of all this Sora and I realized that the original wedding date was not going to work; it was only the end of August. “Rudy and I are going to get married day after tomorrow,” she told me. Where? “Grandma’s apartment. We told her we would do this where she could attend.” So with Louise on oxygen and morphine, me holding the flowers when bride and groom exchanged rings, Sora and Rudy tied the knot.

 

A few minutes afterward, I spoke with Sora, “I am worried about your parents. I texted and left voicemail that my Mom is fading fast, but I don’t know if they got the message.” At that moment, Ted and Sung came through the door to say goodbye to Louise. They had no idea that Sora and Rudy were there, much less that a wedding ceremony had just taken place in my Mom’s bedroom. After Ted and Sung rushed to Louise’s bed, they came back, and Sora and her mom spoke to each other for the first time in years. While Sora and her mom were talking, I introduced Rudy to my brother, and they had a nice chat.

 

That afternoon, everyone had left. The nurses were guessing that Louise might survive another 24-48 hours. I was alone with my Mom. She was still in a morphine-induced coma. Peaceful. I held her hand. Could she hear me when I talk to her? I think so. “Mom. You have done all you can. Sora and Rudy got married here in your room, just as they promised. Ted and Sung came here and said good-bye, just as you wanted. And Sora and her mom have started talking to each other again. No one knows where that is going, but you got it started. You’ve done all you can do. It’s ok to let go.”

 

I sat there for a while and then walked into the other room. Five minutes later, the nurse called me back. “Her breathing has changed.” I held her hand and said it again. “Your work here is done. It’s ok to let go.” And she left.

 

At the viewing, Sung approached me in the room where we had both come to say goodbye to Louise, “Where is Sora? Isn’t she coming?” I was told she would come. “Good. I look forward to talking to her.” A few minutes later, Sora and Rudy arrived, and Sora and her mother spoke quietly in the corner of the room where Louise lay in her open casket.

 

Louise ended her life well. We do not know whether she was aware of the wedding when it happened, but she loved planning it for sure. She might not have seen the results of her intervention in family matters only days before she died, but it seems to me important that she tried to be powerful until the end. If I could do it again, I would have started earlier with the protocols under the End of Life Option Act because I wanted my Mom to be empowered to control the timing and means of her own end, but perhaps it is not too much to hope that stories like ours will inspire legislators in Sacramento to revise the Act to make it more user friendly for people like Louise.

 

 

 

 

Robert Loewen

Bob Loewen is a retired lawyer and freelance writer who lives in Laguna Beach, California. Co-founder of the nonprofit public policy think tank, California Policy Center, his writing is often found on the Op Ed pages of traditional media and on the internet. Following a clerkship at the United States Supreme Court, Mr. Loewen worked for 37 years at a prominent international law firm, where he was a partner from 1983-2013. He is currently writing his first novel, Naked Lady about the experiences of his mother in law in the Dutch Resistance during World War II.

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