Spiritual care is an important part of end-of-life care,
whether the patient and family have a strong traditional religious background or not. When faced with the end of life, it is not uncommon for patients to wonder what comes next, to question what their lives have meant and to worry about unresolved issues. The spiritual care coordinator can help, either by following the patient and family’s own religious practices and prayers or simply by addressing their philosophical feelings and fears about death and dying.
“My job varies from being a liaison between the patient and family and their parish or, on the other end of the spectrum, being there for them to talk to when individuals have never been in a church or have been away from a church and now they are facing death,” says Pastor Ralph Hamer, a spiritual care coordinator for AseraCare in Altoona, Pa. “They are asking the hard questions: ‘What happens after death?’ ‘How do I handle my guilt?’ ‘How do I say goodbye to my family?’ ‘Who will do my funeral?’ We come in to answer those questions.”
When faced with the end of life, it is not uncommon for patients to wonder what comes next.
Initially, people who have no church affiliation or belief may be intimidated by the idea of a spiritual counselor; they resist being “preached to.” But often when families and patients see that the hospice team is ready to meet them wherever they are — without imposing any judgment on them — then they want to talk.
“Once patients and families know it’s not a judgmental situation — that I’m not going to impose any kind of spirituality on them — they feel more comfortable talking to me,” says Gary Griffith, spiritual care coordinator for AseraCare Hospice in Richmond, Va. “I meet people where they are. I never try to replace a family’s or patient’s minister. I try to work within the community to make sure they are getting visitations and sacraments if they want them.”
For families and patients who don’t want a specific religion, hospice offers a ceremony called the commendation of the dying, a service that commends the person’s spirit to God’s care. “It can be anything from final prayers to a nonreligious way to assure them a gift of new life,” says Ralph. “Some families use it in place of last rites. Sometimes it’s more silent prayer or playing hymns. It’s a way for everyone to let go.”
Family dynamics are another dimension in which the spiritual care coordinator can bring resolution. Siblings often disagree about what should be done for a parent facing death. Children and parents often have unresolved enmity. The spiritual coordinator can be a bridge that allows everyone to explore their feelings and come to resolution.
Ralph recalls a patient in a nursing home who had been abusive to his children when he was younger. “We tried to contact his children, but they refused to come,” he says. “We asked them to send a photo of his grandchild, but the daughter told us not to contact her again until he died.”
But this man needed to heal. “One of the staff at the nursing home had a daughter who came to spend time with him, drawing pictures, which we put up on the walls,” says Ralph. “He kind of adopted her — it almost made him feel as if he could have a second chance. We find that, who people were in their younger days, by the time we see them, they can no longer be that person. Whole personalities change, and sometimes it’s hard for the family to see that and let go of old emotions.”
Upon occasion, spiritual care coordinators are asked to perform specific religious duties. “We had a patient who wanted to be baptized,” recalls Gary. “We arranged for a priest to come out, but the patient was confused and she wouldn’t let him baptize her. So I performed her baptism in her home.”
Another spiritual care coordinator, Benny tells of how he baptized a man in his own bathtub just hours before he passed away. “
“James had indicated to me in my initial spiritual care visit that he and his wife felt at peace with his salvation, but he wanted to be baptized. Knowing that the patient’s condition was fragile and that there was no time to waste, I immediately contacted my supervisor and asked if AseraCare would arrange to have an ambulance transport the gentleman to a local church so that the baptismal ceremony could be held. With no hesitation, the supervisor gave her consent and I made arrangements with both the church and the ambulance provider right away. Nevertheless, the day that we were to hold the baptismal ceremony, James’s condition declined rapidly, and upon my visit to his home it was obvious to me that the trip to the church was out of the question.
“I recall looking into his eyes as I asked him, ‘ James, do you still want to be baptized?’ He softly but assuredly replied, ‘Yes, I do, please.’ I looked at some of the male family members standing around me and asked if they could help me carry him to the bathtub. One of the ladies filled the bathtub with warm water. Everyone was so willing to help carry out this man’s last wish.
“We gently placed a sheet under James’s frail body and carried him to the bathtub. As I looked at the tub filled with water, I realized that because I could not let go of the corner of the sheet I was holding onto, I would not have a free hand to untie my shoes. Without hesitation, I lifted my leg over the side of the oldfashioned bathtub, which seemed to be the deepest I’d ever seen, and I plunged my foot, shoe and all, into the water. I held James’s head in my hands and whispered, ‘Are you okay, friend?’
“I’ll never forget his countenance when he replied, ‘I couldn’t be better.’ In a company of 20–30 friends, neighbors and family members, I lowered his head beneath the water and felt an overwhelming sense of peace. As I drew his head up out of the water, he exclaimed with a smile spread across his face, ‘I feel it! I feel it!’
“With his frail wife at his side holding him and drying off his face at the same time, I knew I had been privileged to be a part of such a beautiful moment. Then came tears of joy by nearly everyone who had been privy to the observance of his last wish.
“James was quickly sponged off and laid back in his bed, which had been made with fresh sheets. I stood beside his bed, and just a few hours later I watched him gently fade away from this world into the next. The memory of that night will always be fresh in my heart.” Sometimes the job of the spiritual care coordinator goes far beyond prayers and comfort. Mazelle Hughes, spiritual/bereavement coordinator with AseraCare in Houston, Tx., tells an extraordinary story.
“When Oliver entered hospice, we had no idea how much we would be able to provide comfort to him and his family in the next week. Oliver was the 60-year-old father of four children. They were a closely knit, loving family.
“Oliver began to receive crisis care during the week. His daughters told me that their younger brother, Jack, was incarcerated in central Texas. They told me that their father would really like to see Jack before he died. I was actually amazed that they referred to their father’s death, because most of the family members were in denial.
“I contacted the Texas Department of Criminal Justice (TDCJ) and requested a visit and the support of the TDCJ chaplain in informing this young man of his father’s condition. I was told I needed a letter from the doctor requesting a visitation from the prisoner, but that the system didn’t usually grant these visits. I told him that the chaplain would try anyway. Oliver’s doctor agreed that the visit would be really good for the family, and we faxed the consent and request forms. “Oliver’s wife, Lizzie, told me that when her son walked into the room on Saturday, Oliver, who had been semiconscious for a few days, reached out with both arms and hugged his son, while calling his name and crying. Lizzie particularly appreciated the fact that the officers brought him without handcuffs. They sat in the living room while Jack visited with his father, and then they allowed the family to make breakfast. The officers ate in the living room while Jack ate with his father. She said this was special because Oliver knew that breakfast was Jack’s favorite meal.”
“You just don’t know what that meant to all of us,” said Lizzie. “Hospice just stepped in and helped us; they took over and guided us when we didn’t know what to do! I will always have this picture in my mind of how Oliver hugged Jack and called his name. My husband slipped away early Sunday morning. I believe he had been waiting for Jack!”
“Lizzie asked me to speak at the service for Oliver,” Mazelle said. She was able to tell the story and express how much she appreciated everything we’d done. ‘You must have the touch of God,’ she told me, ‘because when you asked, they got him there within 24 hours!’ Lizzie said that was a memory that would sustain her.”