Have Guitar, Will Travel — On the Road With a Hospice Circuit Rider

by | 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. 

Why I Wrote an Assisted Suicide Family Thriller

by | 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.