by John Byrne Barry | Oct 28, 2019 | End of Life
Earlier this year, I was talking with some folks about my now completed book, an assisted-suicide family thriller called When I Killed My Father. One woman, A—, told me that her father had died recently after choosing a medically assisted death that is now legal under Canadian law. I asked her if I could call her and ask her more about the experience. She said yes.
In the United States, there are eight states and the District of Columbia that have medical-aid-in-dying laws. Oregon has had the law for 25 years. The British Columbia law is similar to those laws in U.S. jurisdictions, except in two significant ways. In the U.S., the person who wishes to die must be diagnosed with a terminal disease, and have six months left to live. In British Columbia, however, anyone who has a “grievous and irremediable medical condition causing suffering that is intolerable to the patient” may qualify.
The other major difference is that in the U.S., the patient must self-administer the prescribed drugs, whereas in B.C., a doctor may also administer the drug.
How did your father’s death and decision to die come about?
My dad was two weeks shy of his 88th birthday. He enjoyed robust good health for 86 of those 88 years. In the last year, his health declined rapidly. He spoke frequently about how tired he was of the medical intervention — all the stuff he had to do every day to manage multiple chronic conditions.
I didn’t know if he was aware that medically assisted death is legal in Canada. I talked with my sister about bringing it up. She was in agreement.
So I said to him, did you know this law in Canada allows you to end your life legally? He was not aware the option was available.
How did you bring it up?
My dad was organized. He had made his will a good ten years ago. He started talking to me about his bank accounts, his will. His financial affairs were in order. His funeral wishes were known. His death was not a taboo subject in our family.
It was probably in the course of talking about his health. He said he was tired of doing all “this.” He didn’t specifically say he wanted to die, but it was implied, and had been implied a number of times before.
In that last year, he had moved into a senior residence. It was a nice retirement home. He didn’t have to cook. He didn’t have to snowblow. We were moving forward. We all expected he might live into his nineties like his parents did.
Q: What happened then?
He was interested, but we didn’t talk about it pertaining to him, only generally.
I asked him if he remembered Sue Rodriguez, who had ALS and sued the government for the right to die. She lost, but she started the right to die movement in Canada.
His health continued to decline. He was told he had to have a major surgery.
He decided he didn’t want to do that. He wrote us an email, told us he’d been to his doctor to say he didn’t want the surgery and they had discussed whether he was eligible for the end of life option. The answer was yes, and he chose it that day.
He had had surgeries and every time he went under general anesthesia his memory would be terrible for a while afterwards. I didn’t know if he would remember our conversation about Sue Rodriguez, but he remembered very well.
He didn’t tell us beforehand. He made his own decision. He talked with his doctor and then told us. He had been in a relationship with a woman for many years and although very sad, she understood and supported his decision, as did my sister and I.
How did it play out?
The law states you have to be assessed by two doctors. You don’t have to have a terminal illness, but the end of your life must be foreseeable, and your condition has become unbearable to you. It is for the individual to decide what unbearable is.
There’s screening so someone who is depressed would be ruled out.
His family doctor was one of the two to assess him. She was the one who administered the drugs. Doctors don’t have to perform the procedure, but if they don’t want to, they have to refer you to someone who will.
She found another doctor in her clinic who would do the second assessment. All that happened in a day. That evening he emailed us. There was a mandatory ten-day waiting period. He chose the day after the waiting period ended. It sounds strange to say, but he was so relieved he could do this, he was very happy.
My sister and I traveled to stay with him. We went to the doctor with him to hear about what would happen. What drugs they would give him, how long it would take.
My dad wanted to be sitting on his living room couch and that’s where it happened. Not bedridden.
Dad said anyone who wanted to be there could be. My sister and her husband and daughter — his only granddaughter — were there. As was his partner and her daughter. I was there too.
On the morning of, a nurse put in two IVs, one on each arm, and left. She then came back a short while later with the doctor. There is a procedure the doctor must follow to reconfirm the person’s intention.
“You know why I’m here, J—. You requested this.” He had to sign another form. The family thought that was overkill, the additional paperwork, but it is there for safety in case someone has changed their mind.
Knowing he’d have to give a final consent, my Dad refused any pain medication so he would be fully conscious and there would be no doubt about his consent. He thanked Sue Rodriguez.
The administration of drugs began. First he was put to sleep. His final words were, “I think it’s working.”
He fell asleep. I put a pillow behind his head. It took ten to fifteen minutes to give all the drugs through the IV. There is an option to take it orally, but some people have nausea problems, vomiting.
First came a sedative, then lidocaine, then an anti-seizure medication, and finally propofol, which stops the lungs.
His death was very peaceful. A couple of deep breaths and then he stopped breathing. I have been present at two other unassisted deaths, where the person was struggling for breath. He didn’t struggle, just relaxed.
How did you react?
It was hard. I was crying. I really wanted to sob, but I was concerned he would be distressed if he could hear me, so I held myself back as much as I could.
Afterwards, I didn’t feel the need to cry anymore.
You felt comfortable even though you were sad?
Yes. There was never any question that this was what he wanted.
When he chose to end his own suffering, he ended mine as well. I hated seeing him suffer. I was at peace too.
How long has it been?
Four months.
I miss him a lot. When other people I’ve been close to have died, I missed them, but this experience is so different. This was a positive experience. My mom died of colon cancer. She had a long, terrible death. My dad nursed her through it. He didn’t want that experience for himself. It was terrible for all of us when she died. It was ruthless. This was so different. I was at peace with it and I still am.
What about the other people in the room?
I was focused on my Dad. We were sitting on the couch side by side. I could feel his shoulder next to mine. He had an eye problem, had an eye patch, and I was on that side. That was why I sat close to him — so he could feel me because he wouldn’t have been able to see me.
I don’t think my sister cried. Dad’s partner and her daughter were on the other side of him. I couldn’t see them. We were all pretty quiet.
Were there any obstacles, bumps in the road during the process?
None. I thought there would be more bureaucracy. But the B.C. government website was clearest I’ve ever read. Very good about explaining what the steps were. And that’s what did happen. Everyone we dealt with was helpful and compassionate.
Thank you for sharing your story.
UPDATE: Sections of Canada medically assisted dying law were overturned by a court in September, with a Quebec Superior Court justice declaring the federal and provincial laws are too restrictive. Like the U.S. laws, the Canadian law requires the patient have “foreseeable or imminent death.”
Justice Christine Baudouin ruled that “The reasonably foreseeable natural death requirement deprives both individuals and claimants of their autonomy and their choice to end their lives at the time and in the manner desired.”
The provision will not be suspended for six months to give the government time to develop a new law.
by John Byrne Barry | Oct 24, 2019 | End of Life
One of Reimagine End of Life SF’s more than 200 events is a performance by Gina Harris called “The Magic of Ordinary Things.” I met Gina in September at a collaborators meeting in San Francisco and spoke with on the phone earlier this month.
You’re performing “The Magic of Ordinary Things” at the end of this month. Tell me more about your event.
My show is a solo performance inspired by losing three of the most important people in my life. I call it a musical memoir — about how I struggled through grief and found happiness and a home inside myself.
Although the show is about loss, it’s not a melancholic show. It’s about how tender, wonderful and funny people can be together.
I note that you say it’s not melancholic. It’s almost as if you have to say that because people assume that if you’re dealing with grief and death, it will be heavy.
Yes, loss and memories are so much more than melancholy. There is that, of course, but also love and laughter and the moments we were close (are close still!) with those who have died.
How did you start writing the show?
I’ve been a performer for years in Los Angeles, on Broadway and in jazz clubs in The Bay Area, so performing and writing are part of who I am. Then I lost my father, my mother, and my singing teacher, who was like a mother to me — and it felt like it happened all at once.
As I kept going with the songwriting and singing, I felt like the songs tapped me on the shoulder and said, “hey we’re a show.”
I was putting together this show together last year when I heard Brad interviewed. [Brad Wolfe is the executive director of Reimagine End of Life.]
You said this show grew out of your grief. How did you go from grief to creation of your show? Wasn’t that a painful process?
It was a baffling and mysterious process. I kept living my life, but where the hell did my people go? I didn’t know what to do. I couldn’t bear that they were dead.
So I thought about when they were alive. I wrote songs. The songs were more about who they were in life. Who we were together.
I felt so alone. I asked myself, was I a good daughter? These songs were a way of coming back. They came from pain. The benefit was that I remembered my loved ones better. I got to know them better through writing the songs and singing them. My relationship with my parents deepened after they died. I thought and felt so much about what we had done together, how we had been together.
I was the closest companion for both my parents. First my Mother and Father and me. Then my Mother and me. Then Lilian, my Singing Teacher, and me.
Will this be the first time you’ve performed the show?
Yes, this show is premiering for Reimagine. Though I’ve sung some of the songs before. I put the songs together and wove them into a story.
What do you hope participants will get out of this?
Exactly the word you said. Hope.
What would you say has surprised you most about what you’re doing? What have you learned?
It reminded me of how much I learned from my parents, and about my parents. I would say relationships between Mothers and daughters can be fraught with tension. I was her only child. She was trying to fix me, which I resisted. I always loved her. Doing the show reminded me of her love for me and mine for her.
What do you do when you’re not performing a musical memoir?
I’m a vocal coach and I’m a singer-songwriter.
Tell me again where and when.
It’s at the Phoenix Theater on October 30 (Wednesday), November 1 (Friday), and November 2 (Sunday). The Phoenix is at 414 Mason. Suite 601.
by John Byrne Barry | Oct 18, 2019 | End of Life
One of Reimagine End of Life SF’s more than 200 events is a storytelling gathering in Berkeley led by Laura Turbow and Rachael Friedman of Still Life Stories. I met Laura in September at a gathering of “collaborators” at The Laundry in San Francisco and spoke with on the phone earlier this week.
Your upcoming event is called “What They Left Behind: A Night of Storytelling.” Tell me more about it.
We hope our gathering will give people time to think about loved ones who’ve passed away.
I’m a big fan of The Moth, live storytelling and our event is Moth-like. We are asking participants to bring an object and a story to share. Unlike the Moth, you can use notes. you don’t need to memorize your story. The idea is that the story is about someone who has died, and the object is a way you remember them.
In our business, Still Life Stories, we use objects as springboards to tell stories about our lives as well as the lives of people important to us who have died.
Can you give me an example of an object that might turn into a story.
Here’s one I love. A friend, her husband Jon passed away while their daughters were still young. She had a box of Jon’s things, which included a broken plastic camera. If the girls were to find that camera, it would mean nothing to them. But it has a story. Jon had been in Africa, in the Peace Corps, and she went to visit him, and when she was there, they were out in the jungles and Jon was taking photos with this camera when they were chased by gorillas.
So the object might have little meaning by itself, but the story gives it meaning?
Exactly. This whole idea for Still Life Stories, which we started three years ago, came from a client who asked me to photograph a sweater. She had kept it for decades. It was not in good shape anymore. It had meaning, but she was never going to wear it, so she had me photograph it so she could let it go. She felt that she could let it go if she had a photograph of it and told the story. So the photo, or the object itself, can lead to the story.
How did you come to be involved in the end-of-life movement?
We found out about it last year. My partner, Rachel Friedman, and I contributed a few photographs to the Reimagine art gallery last year. We also did some photography and interviewing at some of the events.
What do you hope participants will get out of your gathering? Do they have to have something prepared in advance?
I want it to be a community night — they hear something that strikes them, they have a chance to share. I have a great belief in storytelling. I hope this will also be a way of giving time to people who have passed away. There’s mourning and sometimes with stories, you can tap into those who have died after they’ve gone.
What would you say has surprised you most about what you’re doing? What have you learned?
You know it sort of like things coming out of the closet. It’s hard for people to talk about dying and death. This whole Reimagine End of Life idea is like an awakening to death. It turns it on its head. It’s a more accepting approach. So many of us deny the idea of death, but that can make us us crazy. Accepting death is easier than denying it.
I have this big place for gratitude in my mind and my heart. I’m grateful for many joyful experiences. But my mind can go from having gratitude and at the same time to an anxious feeling of loss and “what-ifs.” Especially if I think about people I know who have died. I’m happy to be alive. I feel lucky to have all the gratitude. But it’s a muscle we have to work. My father-in-law is a former oncologist who helped his patients with end of life, death and dying worked his gratitude muscle every day and is a person who now regularly leans in toward gratitude.
Have you done this before?
No. We started our business three years ago, but this is our first big, live storytelling gathering. We do have two lead storytellers to help get it going. We’re really hoping people will come with objects and stories.
I think Reimagine is ahead of the curve as far as getting the conversation about death out there on the table for us all to digest. But we’ve made progress. Remember, for a long time, you would whisper the word cancer. Now you can say it out loud.
Tell me again where and when.
In Berkeley at Congregation Beth-El, 1301 Oxford Street, Wednesday, October 30, at 7 pm. We hope to see you there.
Storytelling allows people to feel connected. It’s important for people to tell their stories, important for them to be heard. It’s important to honor those who have passed away. We don’t talk about the dead as much as we could.
by John Byrne Barry | Aug 28, 2019 | End of Life
A CONVERSATION WITH SPIRITUAL SUPPORT COUNSELOR PHILIP ROUNTREE
At one time Philip Roundtree, a minister turned hospice counselor, owned 52 guitars. He has sold most of them, but he still brings one with him when he visits his hospice patients. I met him for coffee in Mill Valley earlier this year to ask him about his work.
I see that you are a Spiritual Support Counselor, and that you offer “sympathy, counsel, music, and magical moments to dying people and their families.” That’s good.
I didn’t write that.
It was on LinkedIn.
Then maybe it was me.
You were a Episcopal minister for many years. How did you come to work in hospice?
I did 32 years of full-time church work. I retired at 57, to seek new adventure. When I heard Hospice by the Bay had an opening, I jumped in.
What is your day like?
I’m a circuit rider. Two-third home based and one-third nursing homes and facilities. I have 48 patients, mostly off 101 between Marin and Healdsburg, plus a few in Napa and Sonoma Valley. Fortunately, I like to drive. I usually visit about 18 patients a week.
Tell me about the visits.
There are the people who can’t talk or communicate. Those visits are shorter, but I always treat them like they’re fully there, like they’re listening to everything I say. I entertain them. If I ascertain through family members they have a religious orientation, I go in that direction. I tell stories. Pray with them. Play music and sing.
I was going to ask about the guitar.
My boss said bring a guitar. There’s a great documentary on Netflix called Alive Inside, about how people who seem to be uncommunicative can come alive because of music. Especially if I play an old song like “Somewhere Over the Rainbow.”
My repertoire is folk, pop, rock from the 60s on, but I’ve been learning older music like Frank Sinatra.
There was one woman with severe dementia who had been non-responsive for fifteen years. I visited her faithfully every two weeks, told her stories, played her songs, and then played her this new song. I told her, I just learned this. I’m not sure what it means. What do you think?
She just started talking. Nonsense, but looking at me.
I said to her, you’re an amazing woman, because you’re been trapped in your body for so many years.
From your vantage point, does it seem like there’s progress in how we deal with end-of-life?
I’ve only been doing this for two years, but I dealt with hospice for 30-plus years as a minister. There used to be a lot more stigma. We used to not tell people they were dying. Calling hospice was considered the kiss of death. Now it’s completely different.
Hospice by the Bay is now branching out into palliative care, which is more longer-term alleviation of suffering, but not curative.
Can you clarify the difference?
It means you’re not going to get healthy and dance again, but you’re not dying yet.
When you sign on with hospice, you get a whole team of people, you get me, you get several grades of nurses, home health aides, a social worker to help you navigate the bureaucracy. You’re assigned a doctor too. You may not see the doctor, but we’re using Zoom a lot, so you might have a face to face with the doctor while he’s still in his office. You can even show the doc the wound on your arm.
When we were trained, they said that when people find out you work with hospice, you hear one of two things. One, which you hear most of the time, oh hospice is wonderful, they took care of my mother, they were great. Or, hospice gave her morphine. They killed her.
What about the family? Talking about death. Is there resistance?
People can always opt out of hospice. Get one more round of aggressive treatment.
But generally, people understand they’re in the final chapter. That’s how I frame it. I say, this is the final six months, how do you feel about that? How can I help?
Those who are verbal and lucid, do some of them reflect on dying? My dad died young, of liver cancer, when he was 63. I remember asking him something like, do you think about your life? He said no. That was a conversation stopper.
How do you get people talking?
I talk to them the way I might at a cocktail party. Where did you grow up? What have you experienced? This sometimes leads to exploring their spirituality. I’ve been fortunate that some patients who had lost all spiritual connection confided in me that they wished they had it back. I said it’s not gone.
There was a lady who recently died. She was ready. I saw her six hours before she died. When I first saw her, she was very ill — her designation was “imminent,” which meant within the week. When I introduced myself, she said, I don’t want anything to do with religion. I said fine. A couple weeks went by and she got better and we took a liking to each other. I asked about her religious history. She was raised Catholic, and she got divorced, and then met someone, and wanted to get married within the church. Get her first marriage annulled. She got the standard line from the local church, well, annulments are hard to get, however, if you make a such-and-such gift, fifty thousand to the building fund, we can expedite the process. That infuriated her. She renounced religion.
I asked if she’d be interested in getting reconnected. She said yes. We wound up having a great time. I told her stories. She would have a list of questions. I sang. We prayed together. We exchanged Christmas gifts. She was just such a beautiful, transcendent person.
But how do you talk to someone who’s dying? When I lived in Berkeley, my neighbor Leona was dying. I remember how uncomfortable I felt knocking on the door and visiting her. So I didn’t. I still feel guilty about it. I didn’t know what to say.
That’s what keeps a lot of people away. The number one complaint, if you will.
One of my old parishioners called me up two weeks ago, said he had a friend who was dying and who wanted him to visit. He didn’t know what to say. You don’t have to have a speech, I said. The gift is that you’re there. Mostly, they want to be treated like a normal person.
I was talking to a patient yesterday who has decided he’s done. He doesn’t like not being able to walk and he misses his wife. He tried to starve himself at first. That got more and more uncomfortable. He talked to doctors about the EOLOA option.
What’s that stand for?
End of Life Option Act. We don’t endorse it or try to prevent it.
I went over this laundry list with this guy. Do you want a service, funeral? What he wanted was to see what’s on the other side.
What about that, afterlife? Promising something could be—
No, no. Nobody knows what happens. There are clues in scriptures. The people who are definite about it are making it up. If they have a Christian or Jewish orientation, i just say, there are clues on the other side, you might want to buckle up for an adventure.
The man I was talking to yesterday, mostly he wants to see his wife.
Sounds like this work requires a great deal of empathy. Is that something you can grow?
Two years in, I’m still working on my presentation. At the beginning, I have to sell myself. If they’re at home, I have to call and make an appointment.
My latest line is that everyone else that comes in has a specific job for you. Mine is the larger picture, the whole mind-body-spirit connection. And you don’t have to have any religious affiliation.
Are you present for death?
Not usually, but twice. Almost by accident. I might give them the last rites, but I don’t really stick around.
Not everyone wants to die in a room full of people. I remember a family in church. They brought the mom home, had a vigil. The daughter was in the room with her mom, by herself. She left for the bathroom. When she came back, her mother was gone.
I’m curious about how you give of yourself with these people and deal with the fact that they’re all going to die. How do you balance making an emotional connection and taking care of yourself.
Hospice tells us not to get attached. But I do. Not to all of them. But I care about them all. I want their last chapter of life to be as beautiful as it can be. Whatever I can do to enhance that.
I know you’re not supposed to fix things, in the medical area anyway, but I imagine people have unfinished business. Do you address that? Are you supposed to?
My official job is to provide comfort, solace, and facilitation to bring the patient and family to the end. However, when I walk into a conflicted family system, if I think I can enhance the whole end-of-life experience, I try. Recently, there was this very old woman who refused to die. You’re supposed to live less than 6 months after you get booked with hospice. She was frail — a gust of wind would have blown her over — but she kept on going, for more than a year. She had a daughter who apparently resented her for some past wrongs, and we talked, I said maybe you can speak to your daughter about that. So she did. She apologized to her.
Later, I spoke to the daughter, and I said, I understand your mom apologized to you, and she burst into tears and gave me a big hug. It made everything go easier.
by John Byrne Barry | Aug 20, 2019 | When I Killed My Father
My mom died last year at 95, after ten years of falling deeper into dementia, and if I’m honest, I have to admit there were times during that period when I wished she would die.
Seeing her decline was heartbreaking. First she lost her sight, then her mobility, then her mind. Yet, often when I called and asked her how she was, she would say, “Oh, I’m fine.”
Except that time she answered, “Well, there’s a bear in my living room.”
“What’s the bear doing?” I asked.
“Sorting through the mail.”
I miss her, but I was missing her long before she died. She had become a shadow of the vibrant woman she had been. Some days she was more lucid than others, she still had her appetite, she still knew who we were more often than not, but she was not going to get better. We wished we could spare her the worst.
I don’t remember when or how I came up with the idea of a writing a novel about assisted suicide, but I’m not surprised I did. The novel was clearly informed and inspired my mother’s and our family’s experience. It’s dedicated to my mom and my four siblings.
When I Killed My Father is fiction. All made up. Our family — my mother’s five children and our spouses — communicated well and handled our real-life challenges with a minimum of conflict. It would not have made for a compelling story.
In my book, there’s a lot of conflict.
Psychologist Lamar Rose’s father has cancer and dementia, and wants his son to kill him and end his suffering. Lamar refuses, but his father keeps asking, and he relents. Then, at his father’s memorial, his sister accuses him of murder from the pulpit of the church.
What Lamar does on his own, leaving his sister out, is wrong in all kinds of ways. But it is what his father wanted. Lamar is caught between what is compassionate and what is legal. I’ve always been attracted to moral dilemmas, especially gray areas where the difference between the right thing to do and the wrong thing are not so clear. Like family. Like relationships. Like dying.
I’m a big fan of John LeCarre, whose dozens of cold-war thrillers and other espionage novels explore that moral muddiness. Like if and when do ends justify the means.
In the past ten years, I’ve written two other novels, where I explored a world that I was exposed to, but was hardly an expert. My first novel — Bones in the Wash: Politics is Tough. Family is Tougher — is a political thriller set during the 2008 presidential campaign in New Mexico. My second, Wasted, is a “green noir” mystery set in the garbage and recycling universe in Berkeley.
As a journalist, I enjoy learning enough about places and issues and movements to be able to write about them with credibility. So I learned about memory care units and advanced care directives and the rapidly growing end of life movement in the same ways I learned about political campaigns and recycling — reading and talking to people.
I was surprised to find out how large the end-of-life movement has become. Even though my mother had a caregiver for ten years, was treated for cancer and a brain tumor, spent many a week in the hospital, and lived in a memory care unit for the last year and a half of her life, I barely knew this end-of-life movement existed until I was deep into researching and writing the book.
During that process, I talked to a lot of people who had personal or professional experience with end of life, and was moved by their stories. (You can see some of my interviews and stories at johnbyrnebarry.com/end-of-life.)
I wrote When I Killed My Father because I wanted to entertain readers, but also because I wanted to encourage more conversation about the all-too-often taboo subject of death. To borrow a headline I saw recently, I wanted to promote the “most important conversation no one wants to have.”
One of the unexpected rewards of writing this book is talking with people in the end of life movement, and I found, perhaps not surprisingly, that they all seemed to be happy, vibrant, grateful people. In one way or another, they all affirmed that awareness and acceptance of our impending death can help us live a more fulfilling life.
—
On October 26 in Berkeley and November 2 in Mill Valley, I am thrilled to be hosting two events as part of Reimagine End of Life SF, a week exploring big questions about life and death. My event, “Why I Wrote an Assisted Suicide Family Thriller,” will be one part author reading and one part conversation about end-of-life concerns — family decisions, dementia, dying, and more.
You can read the first three chapters of the book here.
If you like the book, or even if you don’t, I’d love to hear from you. Contact me at johnbyrnebarry@gmail.com.
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