Companions on the road of life and loss

SCCA's Pastoral Care team celebrates two decades of helping patients, families and staff grieve and rejoice in the face of cancer
SCCA chaplains Debra Jarvis, Anni Armas and Dr. Stephen King
For SCCA chaplains Debra Jarvis (left), Anni Armas and Dr. Stephen King, the mission is all about meeting cancer patients, family members and staff — wherever they are physically, spiritually or emotionally — and accompanying them on the journey through cancer. King, department manager, said the Pastoral Care staff seeks to help people make the most of the time they have left, be it a single day or 30 years. Photo by Dean Forbes

It wasn't a typical ceremony to tie the knot. It took place in a hospital room. The bride, a cancer patient, was on a ventilator and near death. But it had been her heartfelt desire to marry the man who stood next her hospital bed, so with the help of a Seattle Cancer Care Alliance chaplain, the two had a betrothal ceremony. It wasn't legally binding, and the bride's family had to speak her lines and the groom's family helped the reserved, emotion-filled young man with his part, but a couple's wish to publicly declare their love and commitment was fulfilled.

Helping terminal patients complete unfinished business, celebrating news of remission, praying with a member of a patient's family or offering counsel to a grief-struck nurse are just a few of the many services offered by the SCCA's Pastoral Care Department. The group's mission is simple, said department manager Dr. Stephen King: It's all about journeying with people.

Mission and interfaith ministry

"Our mission is to meet people where they are in their own spirituality and to offer spiritual support, help them deal with any spiritual distress that they might have, provide emotional support and connect patients to people in the community if they want specific rituals or have specific needs. We're companions on their journey," King said of his nine-chaplain team. "We help identify someone's own sense of what is meaningful, what's most important and how to make use of the time that they have — whether that's one day or 30 years."

The Pastoral Care staff has been on the journey of helping people of all faiths — or no faith at all — for 20 years. It remains one of the few programs in the nation that invests so many of its resources serving outpatients as well as inpatients.

Having cancer is not a life chapter most people wish to write. But for those who survive, it can provide clarity and direction for the future, as Pastoral Care's founder, Percy Randle, knows well. Randle came to the Hutchinson Center from Mississippi in 1983 for a bone-marrow transplant, a then-experimental treatment and the only hope for curing his chronic myeloid leukemia.

"Like many Center patients, I left all of my major support at home. I had my wife, but we were young and scared to death," Randle said. "I had to find my own connections.

"While I was in Seattle, a little light came on. I wasn't in the ministry at that time, but I was being led in that direction. It just became obvious that God was leading me into chaplaincy. I'd never seen a place that needed pastoral care more than the Hutch. Every patient here was in a life-or-death situation, and spiritual needs really needed to be addressed."

Randle spent time recuperating back home and returned to Seattle for his one-year check-up and a new role as a Hutchinson Center volunteer chaplain. With support from his church, Randle enrolled in clinical pastoral education and began serving Center patients.

"As I volunteered, I had to convince many people that I was not here to gather 'scouts for Jesus' or anything like that. I was here to provide spiritual and emotional support to patients, families, and the staff as well," Randle said. "It was a new concept for the Center, but the Hutch has always been an open-minded place. I was not here to bring people to where I was. I was here to meet people where they were."

The Center established Pastoral Care as a department in 1986, hiring Randle as its first director. Every transplant patient sees a social worker upon arrival and has an assessment done which includes questions about interest in being seen by a chaplain. Most of Pastoral Care's referrals for transplant patients stem from these assessments.

"We also take the initiative ourselves to connect with patients through being aware of what's going on with patients through rounds and informal discussions with nurses," King said.

Holistic treatment

Chaplains are considered an integral part of the Center's treatment teams. "I did hours of rounding with the inpatient team, and I was often asked my opinion or perspective on a variety of issues," said Harriet Platts, who served as a Center chaplain from 1996 to 2003. "Caring for the spirit of patients and families is a valued part of the overall care the Center provides. I've worked in four different hospitals, and I've never experienced a group of people who were as accomplished in the balance of their technical and heart skills."

As the department grew, its vision and role expanded. About 10 years ago, the program broadened its focus to intentionally minister to outpatients.

"Chaplaincy for outpatients makes a tremendous amount of sense, given that transplant patients spend the bulk of their time in an outpatient setting," Platt said. "They start their care as outpatients, and they come into the system with a cadre of issues and concerns in just getting to Seattle and the fear of the unknown. It's an amazing time for conversation and offers lots of opportunities for support. After transplant, there can be lots of issues involving transitions for patients and their families."

Collaborative growth

The bigger-picture approach requires careful attention to continuity of care and strong communication among the chaplains. Pastoral Care staff connects with outpatients and family members in waiting rooms before and between appointments.

The formation of the SCCA brought more changes to Pastoral Care. The University of Washington Medical Center had only volunteer chaplains, so SCCA chaplains continued to help transplant patients — now more than just a walk across the street — and took on responsibility for all general oncology patients at the UW. Chaplains at Children's Hospital and Regional Medical Center took over care for the inpatient pediatric transplant population, while young outpatients are still seen by the SCCA team. In the last 15 months, Harborview Medical Center's Spiritual Care Program has expanded into the UW, so the two staffs work collaboratively.

The Pastoral Care Department was given space on the first floor of the newly built SCCA building for a chapel-like room. They formed and worked with an interfaith advisory group to design and name the space, designated the Sanctuary. The room is open to all, including those who are spiritual but not religious. There are no religious symbols on the walls, but there are sacred texts and literature from a variety of traditions, as well as prayer rugs, head coverings, prayer beads and rosaries, candles and a book in which to write prayer requests. Regular worship and meditation services are held in the Sanctuary.

Any given day brings a myriad of needs to the attention of the chaplains. An atheist or agnostic patient may just need a listening presence. Others might want someone to pray with them, or to provide certain sacraments or ordinances. A physician or nurse may need a few moments to share grief over a patient's prognosis. Chaplains provide resources, such as devotional/inspirational materials, and participate in support groups for staff, patients and caregivers/family members. Some patients have specific needs beyond the scope of the chaplains, so the Pastoral Care staff makes arrangements for certain rituals or asks clergy to come.

Sometimes the requests can be challenging: a family who needed to sacrifice a chicken as part of a cultural ritual, or certain Orthodox Jews who must navigate appointments during their Sabbath while conforming to traditions that do not allow them to open doors or turn on lights.

And always, with such a critically ill patient population, death is part of life. Chaplains help facilitate conversations with staff and families when the transition from aggressive care to palliative care begins. They grieve with families and staff members alike.

"I saw a lot of people die during my time here, and we were there to provide support," Platts said. "There aren't words to describe what a huge privilege it was to be a witness and a participant in those moments. I learned so much about what good living and good dying are all about."

Judy Campbell, a nurse in the Clinical Research Division's Long-Term Follow-Up Program, has been with the Center since 1969. During her years as an inpatient nurse, she relied on Pastoral Care's services. "They helped me meet the everyday needs of our patients," she said. "Many of our patients bonded with our chaplains, and the spiritual and emotional support added another dimension to the care they received."

Chaplains have long been associated with the military, serving as spiritual aides for soldiers. Chaplaincy has been accepted as a focused ministry within health care since the 1920s, and chaplains are also present in hospice settings, corporations and prisons.

Research in recent years has validated the body-spirit connection, said King. Studies have shown that those who have spiritual well-being may be less likely to become sick. If they do get sick, they may heal quicker and cope better.

"There's a lot more emphasis now on research about spirituality and health, and that's helped make our profession more credible with the scientific community," King said. "But we've been talking about holistic care for 75 years. It's not a new concept in our line of work."

Focusing on the science of spiritual health became a focal point during Pastoral Care's recent 20th anniversary celebration. Last month, the department held a workshop and provided consultations for chaplains interested in research and in starting spirituality and health research programs. Dr. George Fitchett, director of research at Rush University Medical School's Department of Religion, Health and Human Values, led the seminar. He is currently researching the role of daily spiritual experiences in the disease process. Fitchett also spoke with SCCA physicians at Grand Rounds.

"Spiritual care is important here, but we're also a research setting," King said. "We're interested in delving more into research."

The goal of future scientific research is an appropriate way to honor the 20-year history of the Pastoral Care program, said King, who also takes time to credit Center leadership for the formation of his group. "There wouldn't be a department today if someone hadn't had the courage to support something that they might not have understood at the time," he said. "The courage to take risks, to begin something new, to support it financially, to allow for growth — Pastoral Care has grown in much the same way as the Center. We've been given very strong and steady support throughout the years."

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