The journey of dying with Central Coast Hospice

Jun 21, 2017

 

Donna Borello is small, with rosy cheeks. We sat in the living room of her house in Cayucos, where her husband George spent his final few days.

 

“We were married for 61 years. We met at high school. That was a long time ago,” said Donna Borello.

 

George transitioned to hospice care after his doctor diagnosed him with a lung disorder that continued to get more and more severe. He died last month.

 

Hospice is usually thought of as a place you go—a home, or a dimly lit facility, the kind of limbo between life and death.  Many people have told me this, that they thought hospice was a place your loved one was sent— and that it was would be place that separated you from them, before their death. A lot of people said it felt ominous and scary.

 

But in George’s case, it was something that came to him.

 

There are several hospice services in San Luis Obispo county, and each one works from inside the patients’ homes. The hospice workers I talked to describe hospice more like a philosophy rather than a service.

 

It’s part of a larger idea called palliative care, or comfort care—emotional, spiritual, and physical support for those who know they’re at the end of their lives, but are deciding not to pursue treatment. They just want to be comfortable.

 

And it’s not just for the oldest of the old, either. Kayla Hammer, the director of nurses at Central Coast Hospice, told me that the demographic of people who use hospice is really all over the place. What most patients share, though, is that they have six months or less to live.

 

But it varies. Donna’s husband, George, was on hospice for two years.

 

Donna and George went to nearby high schools in Fresno, but it wasn’t until after college that they began dating. George went off to Korea and served in the air force. Donna taught school in San Jose. Four years later, they ran into each other again, at a restaurant.

 

“We both went out to dinner one night,” Donna said. “I had a date, and he was with with a friend and it turned out the friend was a mutual friend of ours. And as he was leaving dinner, I was leaving dinner with my date, and when I looked up I thought my brother-in-law was standing there. But it wasn’t my brother-in-law. It was George.”

 

Donna said it was easy to start dating George. They had a lot to talk about, especially the war. Soon after, they married and started their lives together. They bought a small ranch in Lindsay, california. George was in farming.

 

“80 acres of peaches and plums,” Donna said. “And it was different from anything I’d ever experienced. I’ve never lived in the country. We were really in the country.”

 

Both of their daughters were born there. The family moved around, to Bakersfield and Kern county and other towns in California, too. They retired to the Central Coast in 1997.

 

As a farmer and an athlete, George had always relied on his physical strength and his body to take him through life. But he had been a heavy smoker, and so eventually, the Borello’s doctor recommended hospice.

 

“I’ve thought a lot about the people in hospice, but I’ve often thought, who conceived of this idea,” Donna said. “Because it’s so well done—the hospice idea—is so beautifully put together. Whoever did it, did a fine, fine job.”

 

The history of hospice begins with the word “hospitality”. As people traveled, in Europe in particular, there got to be known certain houses along certain trade routes that you could go to if you were sick, or dying. Those houses became known as the hospitality houses, and eventually became known as hospice houses.

 

I talked to Carolyn Rohrbach, who’s a spiritual counselor at Central Coast Hospice. She actually was a huge part of how Central Coast Hospice began.. In her twenties, Rohrbach decided to volunteer at a hospice because of her own death anxiety. It was the part of her personality that she was bothered by—how much death scared her. She went on to become a hospice coordinator and then it just continued from there. She’s been with Central Coast Hospice for the past seven years.

 

Rohrbach’s always been interested in the origins of hospice. Here she is.

 

“And there was a lot of early research done as far as citrus, or oils, or certain smells, or even how listening to running water would really comfort the dying and bring peace to them,” Rohrbach said. “Kind of the first hospice house was in Beaune, France and was built it literally over a creek, a running creek, so as people were gathered in these rooms with these huge fireplaces for warmth, they could still hearing the running water. It’s just so amazing, back then, how they treated death, I mean it was really a very well respected, natural journey.”

 

“Even back East when you look at those houses, in the front rooms, they call those rooms the parlor,” Rohrbach said. “And there’s a big window seat, under that front window, where you would lay out your loved one. And people would bring food, and people in the community would gather, and you would come to the parlor and you would be supported by that community, and you would take care of your loved one that was sick, and dying, and ultimately passed and they would be buried in the family cemetery.”

 

“Where that really changed was the civil war,” Rohrbach said. “Because now, suddenly, you had all these young men dying very far away from home. And they needed to get them home in order for our same cultural rituals to take place. Well, then came in the funeral industry because they figured out how to embalm these young men and preserve the bodies to get them home. Through that civil war process, out of necessity, other technologies were invented to preserve these bodies to get them back home and then people kind of figured out they could outsource it, so to speak, and take it out of the home and develop, what was it: the funeral parlor, right? So now we’re getting it out of the parlor in of our home and moving it into the funeral parlor. And then, you know, what has happened to the front room in our homes in our culture?  Well we now call it the living room.”

 

In the U.S, the hospice movement didn’t really take over again until the 1970s, with Elisabeth Kubler-Ross. She was a Swiss-American psychiatrist and a pioneer in the field of death and dying. In 1972, she testified before the U.S. Senate at the first national hearing on the subject of death with dignity.

 

When a puzzling disease starting killing young men in huge numbers in the 1980s, hospice care went through another transformation. Because no one knew how AIDS spread, hysteria and stigma profoundly dictated how these dying patients were cared for. And for so many, hospice care became the only compassionate option. Those early hospice workers forged a brave path for the creation of residential hospices like San Francisco’s Zen Hospice Project.

 

Now, there are over 6,000 different hospices. In part, a reason for hospice houses was that in the U.S., families were becoming more and more spread out, and many people were entering their end-of-life without anyone nearby. But that being said, according to a report by the National Hospice and Palliative Care Organization, 66% of hospice patients died at home in 2011.

 

“With Central Coast hospice, our role is really to help people stay home—stay out of the hospitals, and stay home,” Rohrbach said.

 

Rohrbach worked with Donna and George — the couple from earlier—  for two years.

 

“These people come into our home and they’re part of our family,” Donna said. “They move into the role that is most needed in our family. If we need a friend, they're a friend. If we need a shoulder, they provide it.”

 

Donna and George used almost all of the services Central Coast Hospice provided. Social workers, nurses, masseuses, spiritual counselors. Many patients have someone coming to their house everyday.

 

“I wish there would be a contest for another job title other than spiritual counselor,” Rohrbach said. “Because I think when people hear, ‘Oh hospice, you get a nurse, you get a social worker, and you get a spiritual counselor!’ and it’s like, Oh my gosh, what the heck is a spiritual counselor? I mean either don’t want someone coming and reading me some scripture that has no meaning for me or, I don’t want a counselor, who’s just going to talk to me and be all warm and fuzzy, or you know, a spiritual counselor-- are they going to come and burn sage for me?”

 

“From a hospice perspective, when we talk about the spirit, we’re talking about who you are on the inside,” Rohrbach said. “It’s pretty common for us to say, ‘Oh, he’s in good spirits, or he’s in poor spirits. We might not be able to define that exactly, what good spirits means to me or you, or what poor spirits means to me or you but we both sort of have an understanding of what that means. You know, is this person in good spirits or poor spirits. So that’s really the spiritual counselor’s role and my role, is to help facilitate that: being in good spirits. So, on hospice, and as a spiritual counselor, can I cure cancer? Absolutely not. But you can be healed. There is healing. There might not be a cure, but people can absolutely die healed.”

 

“We’re not talking about a bunch of strangers, we’re talking about people who just became part of our family,” Donna said. “And whatever we were working on, they worked on with us. And they were so talented. The nurses, the man who gave George his baths and his massages, was very helpful to George; it made a lot of difference to his health.”

 

“It was a family in every respect,” Donna said. “They were true professionals and yet they fit into this different landscape so nicely, you would have sworn that they were born into it. It never felt strange, it always felt very natural, and I miss them. Yeah, I miss them a lot.”

 

“Everybody touches you for sure,” Rohrbach said. “Every patient I’ve ever had in the seven years I actually have a piece of paper from my notes that I still have, I keep them all together, I can’t let them go, because every once in awhile, I go through and think about those people...And we cry, for sure. At hospice, we kind of have a rule that it’s okay to cry at work, there always just has to be someone in the room crying harder than you. “

 

“It’s a weird job,” Rohrbach said. “Our job is end of life and death and most of our spouses and significant others don’t want to talk about that every night at the dinner table. You know, there’s some of those people that I will carry in my heart forever. They just reach in and they touch you, and what a gift, what a gift.”

 

“This generation in particular, that’s leaving us, I find to just be fascinating,” Rohrbach said.

“One patient who passed a few months ago who raised money as a teenager catching rabbits and skinning rabbits and then selling that rabbit meat to the local butcher. Well, I mean, I have kids, too, right? And, I can’t even imagine my teenage son going out and, you know,.it’s just culturally, it’s just a different experience.”

 

Rohrbach said that as a spiritual counselor, the majority of what she does is just listening. She’s heard a lot of stories over the years.

 

“One patient who passed a few months ago who raised money as a teenager catching rabbits and skinning rabbits, and then selling that rabbit meat to the local butcher,” Rohrbach said. “Well, I mean, I have kids, too, right? I can’t even imagine my teenage son going out and...It’s just culturally, it’s just a different experience.”

 

These stories—the memories that become more vivid as they are shared are all a part of what’s called ‘life review’ in hospice. Rohrbach told me the worst possible death for her would be to be hit by a car because it wouldn’t include that life review.

 

But she acknowledges that many people on hospice are not ready to die. She told me that what people Often fear is the “actively dying” part —  when the body stops working as it did, as it starts to make that transition to a place, that for a lot of people, is terrifying. For some people, that takes a few days, others a few weeks. And a lot of the time, even if the mind isn’t ready to confront reality, the body pushes forward.

 

“And that’s okay,” Rohrbach said. “If someone doesn’t want to go there, and somebody doesn’t want to think about that and acknowledge what's happening, that’s fine; I mean, that’s their own journey. And our role, and my role, is to support people wherever they are. If they don’t want to talk about those things, and they want to talk about the Cavs and the Warriors, that’s fine. That’s fine. It’s still spending time with that person, and it’s still honoring that person. I had one patient who really only wanted to talk to me about his pets, and the dogs that he’d had, and the the dogs that he’d lost, and the friendships that he had with his animal family and that’s amazing, and that was a wonderful way for him to start processing grief and that really helped us eventually transfer over into his loss and it actually gave him great hope, knowing in his mind when he passed, that he was going to be with his animals again.”

 

“I’m just really grateful for the accident that connected us,” Donna said. “They just came in and took us under their arms, under their wings and changed our lives. They have a lot of answers to some very basic questions and the questions are the ones that we all deal with, we’re all going to die. We’re all going to have this experience. And, here’s a way to make it better and change it.”

 

“I think collectively, the people that I work with in Central Coast Hospice and in other hospices, at the end of the day, they are the most accepting people,” Rohrbach said. “Even among the coworkers, there’s none of that parking lot chitty-chatter of, Can you believe this? And, can you believe that? I think that people have a reverence and a respect of life and an attitude of really—and I don’t mean to rhyme, but it’s the gratitude. When you spend time with people at end-of-life, it’s such a real conversation. It’s just real.”

“It  has taught me not to argue with reality,” Rohrbach said. “I see so much emotional pain, because people just argue with reality. Pain is one thing, you hit your thumb with a hammer and it hurts, I mean there’s physical pain there, there’s physical tissue damage that has set your nerves off and I mean, that’s physical pain and you can’t really do anything about that, that’s part of the human condition. But it’s that suffering; the suffering is two days later when my thumb doesn’t hurt but I’m still calling myself, you know, so stupid, I hit my thumb...it’s that suffering, it’s that story we’ve got going in our heads, and I think this end of life work has shown me how much just discomfort and unhappiness comes from that suffering.”

 

Suffering is inextricably tied to the hospice experience, but it’s not limited to the patients. It’s the people they leave behind, too. Every single person I talk to from Central Coast Hospice tells me this—that it’s about the family unit — spouse, or their  children, or siblings, or even parents and friends. They’re supporting the unit. And every person’s experience is connected and important, and validated.

 

I spoke to Isaac Smith, the bereavement program coordinator at Central Coast Hospice. The bereavement program handles everything post-death. They offer one on one counseling, support groups, and other resources for anything that family members might need.

 

Logistics seem to pile up after death.. Forms, decisions, agreements, wills—for how ephemeral it feels, death is in a lot of ways, very material. But Isaac told me that logistics often serve as a welcoming buffer for many who have lost their loved one.

 

“One of the goals of crisis work, right, is to get people to return to this baseline,” Smith said.  “With grief, it’s different, because it’s not — and people sometimes struggle with this — it’s not this return to a normal, they’re having to deal with a new normal. A new way of living. A new way of looking at life. Maybe all of the ways that they understood that previously are called into question.”

 

“Grief is a like an untamed animal,” Smith said. “You just kind of have to wrestle with it as it is. And if there’s a safe space to do that, I think people start to feel recognized that they are more a human being. And that’s what i tell them, ‘Hey, on hospice, you get to be a human being, and that’s what we want.’”

 

 

“I think it’s the little things that people are most taken back by or feel strange about, like now that their loved one is gone, they catch themselves tiptoeing back on the hall so they don't wake the person up, or they’ll find themselves calling for that person and realize the person’s not there anymore,” Smith said. “Or going to the store and buying groceries, or coming home and cooking a meal and cooking too much. I mean it’s these little things that are the most confronting to people, because it’s just this reminder: Oh, this person’s not coming back.

 

Sometimes, Isaac’s confronted with those little feelings, too. He told me one of the weirdest things for him when he first started his job was how he began every morning.”

 

“When I wake up and check my email, I find out who died the night before, or that morning. And I could have just seen that person for the first time,” Smith said. “I’m getting to know some people when they’re getting ready to exit. And that was a really cool thing, but it was a hard thing to deal with initially, because some of these people you absolutely fall in love with.”

 

I asked Smith if he got desensitized to it after time, that feeling of beginning a day with someone else’s ending.

 

“I remember I was talking to one of our spiritual counselors, and I was talking to her about that whole idea of the email, and yes there is some desensitization that happens—not in the way where you become numb to it—just in the way that it becomes more normative— but she told me, It should always kind of take your breath away a little bit. And it does,” Smith said. “I get to see a lot of people exit this world or die beautifully, and some people —  the nature of their illnesses are ravaging their body in such a way that it feels compassionate that they get to die, you know?”

 

Some of the people I talked to went into hospice because death was just never something that scared them. One social worker I talked to remembers playing a very active role in her uncle’s funeral when she was just a little girl. Another nurse told me she doesn’t know why, she just never had that kind of death neuroticism. But for other people, like Carolyn and Isaac, hospice was something they came to in order to understand death on a more personal level.

 

“It doesn't feel like this monster I guess, anymore. It feels more natural and it makes the time that you have seems more important. I don’t want to put off loving people well or put off being good to my family, or saying I’m sorry when I’m a knucklehead... it brings to mind like that sacredness of life, and there’s a sacredness to death,” Smith said. “You realize the breath that life is. It’s an inhale and an exhale and it’s over. Nobody talks about their career or the amount of money they made. It’s always about experiences and the people they love. It’s all about relationships and I feel like the American individualism that we have these days, of like, I can just overcome whatever comes...it comes in here, into the grief work, because people feel like they should just be able to tough up and get over it.”

 

“I try to view sometimes what I do, how I exist in the world, that I’m not burdening people, but I’m helping to unburden them in small ways, a little bit, like take a little bit of the stones out of their back as people have done for me; as my friends and mentors and teachers and patients have all helped to do for me,” Smith said.

 

Thanks to Isaac Smith, Carolyn Rohrbach, Donna Borello, Vanessa Swier, Kayla Hammer, and the rest of the staff at Central Coast Hospice. The music is by Lee Rosevere with Creative Commons.