Part 2 in a series of 2

“Has everyone been to the bedside of someone who’s dying?” asked Judy, a clinical care nurse.

Eight new volunteers responded, thrusting their hands into the cold air of Room HO147. On a cold and rainy Monday night in October, these eight hopefuls convened in a converted break room in Stanford Hospital’s basement for a new volunteer orientation session for No One Dies Alone. Some had driven from work straight to the meeting, while others only had to make the short trip down the elevator from their jobs upstairs. They all listened intently to the revolving presentations of hospital chaplains and program organizers.

One by one, chaplains and nurses gave short talks, each speaker ending with a profuse outcry of thank yous directed at the hopefuls. After all, it was death they would be dealing with.

Among the new volunteers was David Bowman, a 70-year-old retiree with wispy white hair and an accompanying white beard. An ordained minister of 40 years with the United Church of Christ, Bowman had given his fair share of last rites. Still he jotted down every bit of advice from the chaplains.

“A dying person’s body temperature will get cooler, so you will need to feel for a pulse.” Quick scribbles of a pen.

“Wet their mouths with a small sponge if you see that their lips are dry or chapped.” Noted.

“You’re never alone in this process.” Word for word.

Across from Bowman was Jim Chan, 49, a single father who had come straight from his 9 to 5 at Sun Microsystems where he worked as a lead engineer. Jim regularly volunteered in the hospital’s E.R., working the Saturday shift from 10 p.m. to 1 a.m. every week.

Bill Strewby sat in a chair separated from the table, a self-inflicted punishment for arriving late.

“I asked like four people and none of them knew where this place was,” he said.

With a handlebar moustache and a purple and green windbreaker, he listened for 40 minutes before his restlessness succumbed to a bout of doodling on his volunteer worksheets. By meeting’s end, he had created his fair share of hieroglyphics — yin-yangs, stars and hearts.

It was a quiet group, according to Allison, a social worker who gave the first presentation. The room was often filled with awkward silence, broken only by Strewby’s crunching of trail mix, as presenters waited for questions. Surely, not everyone could be that confident in dealing with death.

Allison continued anyway, discussing the importance of the volunteers’ mental health, because in this business, “you can’t take care of someone until you can take care of yourself.” Yet, she struggled to find words to explain the need for distance between what’s inside the hospital walls and what’s outside. They had to realize the sensitivity and intensity of the matters they would deal with. She hazily explained the program’s support system for affected volunteers and waited for questions, which never came.

“I know that these things are nebulous,” she said. “It’s hard to recognize when these things are going to be relevant.”

Yet, in discussing the responsibilities of the program, Allison became resolute and clear: volunteers should not and could not take on grief because of their experiences. While their job required compassion, volunteers were expected to stem their emotions once they stepped out of the hospital room.

“The key is recognizing that you have a role in this end process and that your role is pretty confined,” Allison said. “You haven’t caused their death or their lack of family. These are problems that you can’t own.”

But for David Bowman, something wasn’t right. How could he be expected to show concern for a dying person, then forget about that person when he left the bedside or as soon as the person died? And what about the families who wanted to know more?

“What if a family that was around didn’t want to let the caregiver go?” he asked.

Susan Scott explained that neither the volunteers’ phone numbers nor their full names would be given out to relatives. No volunteer would be expected or encouraged to maintain ties to the family of the deceased. The program was about care within a strict standard protocol.

“You are scheduled for a shift,” Scott told them, “and when that shift ends, you have to leave.”

—–

Susan Scott had her reasons for the strict volunteer-patient relationship. She’s based her whole career on staying within the boundaries, and as decedent care chaplain, it’s the only way she can withstand the 40-hour workweek. In her current position at the hospital, Scott handles all death certificates, which average two or three a day. She talks with families whose relatives have died or are dying, and can refer them to the funeral home that’s best suited for their needs.

A self-described introvert, she is quiet but firm. She wears a charm on her necklace that reads, “Live With Grace.” Susan believes that her profession is one meant to provide comfort within a certain reality, describing it almost as a placeholder for grief. “I think you need a certain amount of patience with people and compassion for people,” she said. “And I think part of what I do is hold it for a while for people. I don’t ever try to say, ‘It’s going to be O.K.’ But I try to be with them . . . until they can kind of gather their resources and take care of themselves.”

After 23 years of being a reverend, she’s learned that she’s not there to keep their grief. It’s an understanding that she emphasizes every time a new volunteer joins No One Dies Alone, and the restrictions have been put in place as a constant reminder. For Scott, it’s the only way humans could have any chance of handling death, something she has learned from her own experiences.

_____

It was 1993 and Susan Scott had only been on the job a few months at Lucile Packard Children’s Hospital, when she was summoned to the neonatal intensive care unit to perform a baptism. Weaving her way through the buzzing incubators of the sterile ICU, she arrived to find a baby boy only a few weeks old, still lying on the operating table wired to a ventilator. Doctors rushed back and forth monitoring the baby’s vital signs and examining the aftermath of heart surgery.

“If you’re going to baptize this baby, you’re going to have to do it right away,” a nurse whispered.

Gathering herself between the whir of the machines and the newborn’s labored breathing, she glanced around the windowless room as the parents and grandparents stood silently around the surgery table. She was Lutheran and they were Roman Catholic, and the service would be in English, not their native Spanish. But it didn’t matter. This was an emergency, and any ordained Christian minister could perform the rite. Opening her Bible, she began the Lord’s Prayer:

“Our father who art in heaven, hallowed be thy name. Thy kingdom come, thy will be done . . . “

As family, nurses and doctors recited the prayer, the reverend concluded with the ceremonial dash of water upon the baby’s forehead. He died minutes later.

Scott retreated to a private hospital room with the family. The nurses brought in the baby’s body, clothed and wrapped in blankets. Picking up the baby from its basket, the mother wept; she passed the body to the grandmother, who began to cry as well. Unable to bear the sight, the family placed the baby back in the basket. Susan looked on, unable to comprehend the Spanish between the sobs, and was caught up in her own thoughts as she focused on the baby’s face. And in that moment, she was no longer in the room.

It was 1959, and she was a 9-year-old girl at a funeral home in Delaware. Her brother Michael had died before she had ever known him. He was seven months old.
Viewing the body in its casket only five feet away, Susan clung to her grandmother as she listened to the priest’s service. She could only understand the basics. She knew that her brother had been born with dysfunctional intestines while her family was living on a U.S. Army base in Rome. Her father, a sergeant, had spent the greater part of the year shuttling Michael and her mother back and forth from the hospital, sometimes having to fly to stations in Germany to find better doctors and treatment.

The oldest of four children, Susan had seen little of her baby brother and had often talked to a nun at her Catholic school about her troubles at home. There wasn’t much else she could do.

With Michael’s condition deteriorating, her parents decided it would be best that the family return to the States. Boarding a military plane with her father and the rest of her siblings, she arrived earlier than her mother and brother’s flight, and waited anxiously for their plane to land.

Her brother never made it. He died over the Atlantic.

Looking back, Susan often tells this flashback to new volunteers of No One Dies Alone to explain how the smallest things can trigger the memories of death or traumatic experiences. She tells her volunteers that death isn’t something that should be dwelled upon, but rather part of the process of life. In her line of work, it’s the only way to find closure.

Yet, in those long nights sitting next to the bedsides of her patients, she cannot help but think about Michael.

“For me, it’s also about accepting that death is a reality in life,” she said. “Sometimes, when I’m sitting with someone and they’re very quiet and I’m sort of in my own thoughts as I watch them, I will think about that someday when I will be the one in the bed.”
_____

It takes time for people to realize that death is just a part of life. Some people never come to this understanding. Others simply don’t want to. For Susan Scott, who has lost count of the number of sick and dying she’s sat with, it’s what has allowed her to shoulder the burden that comes with being at the hospital day after day of signing death certificates.

She’s hoped to establish this understanding with her volunteers, but it has never been that easy. Susan’s volunteers are normal people with normal jobs, who have dedicated two hours of their time to deal with something that defines her profession.

Heida’s attempts to reach this understanding are founded on her belief that death is just a transition. As a Catholic, she doesn’t view death as an end, and that’s what’s allowed her to step into the hospital room when she gets the call.

“It would be nice to think that you have loved ones waiting for you and a lot of people do believe that,” she said. “You will frequently hear people say ‘I get to go see Mom and Dad again. I’ll be with my brother again.’”

There is a fine line in handling religious matters in No One Dies Alone. The program prides itself on being non-religious and non-proselytizing, and its patients come from many different faiths. Volunteers are constantly advised to avoid religious conversation, unless prompted by the patient, and to defer any religious questions to the overseeing chaplains.

But religion still plays a large part in the lives of those involved. Susan Scott is not only the decedent care chaplain, but also a Lutheran reverend and handles patients for spiritual care specific to that faith. For Heida and Penny Barrett, religion has provided a means of processing their individual experiences in the program.

Heida frequently referred to her involvement with the program as “a calling,” spurred on by her Catholicism and the memory of her father’s death. Penny, a Christian Scientist, maintained that religion helped define her perception of patients. “From a doctor’s perspective, yes, they are sick,” she explained. “But from my perspective, it’s a hospital filled with God’s children, and I view that as my job to make sure that I maintain that. I don’t think I could have done this for eight years if I viewed them as sick, broken people.”

Not everyone can step into that hospital room. Even fewer can step out, accept what they’ve experienced and move on. It all comes down to the perception of death. While Heida has sat with four different patients in No One Dies Alone, she hasn’t yet fully made the connection that death is just a process of life. But every time she steps in the room, she’s getting a little closer to this realization. And it’s her religion that’s helping get her there.

“For me, to think that this is it,” she said. “It’s too unbearable . . . I think a lot of people, especially people of faith, spend their whole lives preparing themselves and behaving in ways so that there is something more.”

Do you think there is something there after death?

“I hope so; that would be wonderful.”
_____

Today, the No One Dies Alone Program has 70 active volunteers. Yet, there have been even more who signed up and attended the volunteer orientation sessions, before realizing that it’s just not for them.

“No, not everyone can become a volunteer,” said Sandra Clarke. “Everyone has to find their level of comfort. Volunteers wanted to get involved, but they couldn’t do it.”

Jim Chan still has yet to sign up for a shift, citing a lack of time and some communication problems. Jim Bowman, on the other hand, couldn’t come to terms with the religious restrictions put on volunteers. “The program is run by a chaplaincy, but it’s a very secular program,” he said. “I can’t even go in and say, ‘My name is David Bowman, and I’m here to be with you,’ and I can’t say I’m a retired clergyperson, and I can’t introduce myself as a minister.

“I wouldn’t want to impose, but I would like to be freer to use my own good judgment,” he added. “I want to emphasize that I think it’s a good program — it’s just not my cup of tea.”

Of course, many volunteers have stayed. Penny has had a lifetime of volunteering, and despite initial doubts about the program, she has cherished every session with patients. Heida, motivated by her own personal experience on her first shift with Peter Pan Lady, sees herself doing this for a very, very long time.

Heida dug around for the prayer book in her pre-packed program bag with one eye on Peter Pan Lady. With the harp player gone, she needed something appropriate to read to her patient. Locating the book at the bottom of the bag, she picked it up and began thumbing through it for Old Testament prayers. “Stick to the Psalms,” she was advised by the previous shift’s volunteer. “She’s Jewish.”

As 5 o’clock rolled around, she continued to read from the book, picking and choosing small passages. With the next volunteer, Repeka Iemeria, waiting outside, Heida finished Psalm 73 and bid Peter Pan Lady a warm farewell.

But she didn’t leave immediately. She helped get Repeka settled, explaining what could be read, what music should be played and how best to comfort the patient. Yet, looking back at Peter Pan Lady, she noticed something was different: The woman’s chest no longer rose as when she was softly breathing. “You know what — ,” Heida said, “I don’t think she’s alive anymore.”

Heida quickly retrieved a doctor and waited with Repeka as he searched for a heartbeat. When the doctor was sure, he turned to the women and looked at them sternly. “She’s not here anymore,” he said.

Despite the preparation and the knowledge that these people would die, Peter Pan Lady’s death still came as a shock to Heida. No training could completely shield her from the emotions of death. “It was disbelief, I think, because in my head, I had committed to being a part of the program for a long time,” she said reflecting on the experience. “I knew eventually that I would be with someone that would die. But I did not expect it to happen the first time.”

Leaving the hospital room with tears in her eyes, Heida made the long walk down to the hospital basement and the Spiritual Care Offices. Fittingly, in those moments after the death, Heida was never alone, accompanied by Repeka as she cried and held prayers. But these weren’t tears of sadness or grief.

This program is Heida’s calling, and she believes that she’ll be there for many other dying patients as they close their eyes for the last time. Hopefully those experiences will be as moving as her first.

“It was beautiful,” she said. “Everything went right.”

— Part one ran in yesterday’s issue of The Daily.