This article was first published in the Spring 2014 issue of Bearings, a semi-annual publication of the Collegeville Institute.
One January day I met my brother Dave and his wife, Deanna, at the Mayo Clinic, where we learned that the cancer that afflicted him had progressed so aggressively it could no longer be managed or contained. We sat together in a quiet corner and struggled to absorb the information that had hit us with the force of a body blow. We had hoped that participation in a clinical trial would shut Dave’s cancer down, but that had failed. Later, as we shared the Lord’s Supper in the back of the lab’s waiting area, something began to shift for the three of us. Hope for the outcome we wanted began to fade, and in its place hope in God’s promises for a life beyond death began to emerge. I had walked with Dave through his two-year cancer journey, but on this wintery day I realized I was accompanying him on a journey into the unknown—beyond the knowledge of any of us, including the doctors.
To accompany is to keep company with someone—to walk with him. It is also to play a supporting role on a musical instrument for someone taking the solo part—someone, for instance, singing a song. As a hospital chaplain and a church musician I accompany people in both senses of the word. In church, playing the organ or piano, I serve the vocalist and the song, creating a supportive space for the song to emerge, listening carefully and following where it leads. Sometimes I pick up the theme and play what I have heard or give it a slightly different spin. Sometimes the vocalist takes the song in a new direction and I follow as best I can.
The same skills figure in Christian caregiving. Caring means playing a supportive role. It involves being actively engaged, being present here and now, listening carefully to people, paying attention to both the lives they live now and the lives they have lived, helping their song to emerge in its fullness even if they are at the end of their lives.
As a musical accompanist I sometimes have strong feelings about how a song should be performed. In most cases, though, my task is to listen and to respond appropriately, not to exert my own sense of what should happen. The same holds true for my work as a chaplain among the sick and dying. In my experiences with a man named Arne, for example, both the directive and non-directive side of accompaniment came into play. I deeply desired to help Arne reach a state of peace before he went into a difficult and risky surgery. He was estranged from his only living family member, a brother who lived on the family farm. Arne lived alone in the city, and in the dim evening light of a stark hospital room his unsettled thoughts turned toward home. I suggested that we could attempt to reach his brother, and he agreed to try. But the phone number we found was no longer in service, and he could think of no one else to call.
The next morning I stopped by pre-op to look in on Arne. He said he had dreamed that night of the old days on the farm, of his parents and his brother, and he was at peace. A dream rather than the reality of brotherly reconciliation wasn’t the resolution I had hoped for, but I had to accept that this was Arne’s song and that he seemed satisfied. Arne died a short time later in the hospital, unable to recover from the surgery. I was grateful that he died in the company of doctors, nurses, and chaplains who had come to know him and appreciate his gentle spirit. Not incidentally, today a program called “No One Dies Alone” exists, designed for those like Arne—adult orphans, hospitalized at the end of life. Volunteers, usually health care staff, maintain a caring presence with them until death comes.
Accompaniment at the end of life is a shared endeavor. As a hospital staff member I am part of a community of care, of people who care for each other even as they extend their care to patients and their families. We frequently join with faith communities in end-of-life care as well. Recently a woman who was trained as a Stephen Minister in a local congregation did wonderful work by simply being present with a patient, modeling for his active spouse, his caregiver, how to sit in companionable silence. Caregivers can also facilitate times of sharing among family members and friends as a loved one approaches death—times in which words of gratitude, love, forgiveness, and promise can be shared.
In my experience, approaching the end of life is much easier for patients and families who are clear about the goals of end-of-life care. People generally want to be comfortable; they want to withdraw or withhold life-sustaining treatments when death is imminent; and they want to be at home, if at all possible. Discussions about this, called “advance care planning,” are crucial. In my work I frequently facilitate discussions about values, hopes, and beliefs about the end of life with patients and their loved ones. From these discussions come advance directives that guide end-of-life care.
Maryanne was 55, hospitalized in intensive care and on a respirator. She was terminally ill, and as her health care directive made clear, she did not want to be on a breathing machine at the end of her life. But when she developed pneumonia she accepted short-term respirator support in the hope that she could overcome the infection. But she could not be weaned from the respirator. When she was asked if she wanted to have the respirator withdrawn, she nodded. The attending physician balked at this decision, even though it was what the patient and her family wanted. An ethics consultation was called, mainly to help the physician come to terms with Maryanne’s decision. Under hospice care, Maryanne went home with her family.
This happened several years ago, when physicians commonly believed that if something could be done medically, it should be done. Today, with advance care planning discussions, it’s much more common for physicians to agree to limiting medical interventions based on the patient’s own goals and values.
Here in my region fewer people are dying in the hospital and more are dying at home or in a skilled nursing facility with hospice care. In hospice, comfort care that manages pain and anxiety, combined with integrative healing arts such as reflexology, massage, music, and pet therapy, all contribute to the patient’s sense of well-being and peace. The healing team, consisting of family and friends, chaplain or faith-community minister, social worker, doctor, nurse, and aides, can accompany patients to their life’s end with care and compassion in a healing environment.
When curative care no longer made sense, my brother Dave was admitted to home hospice. His “song” became an actual song as he neared the end of his life. Just a few days before he died we were talking about songs he would want sung at his funeral. Deanna and I went over several suggestions, all of which Dave approved. He drifted off to sleep, and we walked into the kitchen. All of a sudden his booming baritone rang out, “On Christ the solid rock I stand, all other ground is sinking sand.” We went to his bedside and listened as he sang the entire verse. This was clearly Dave’s song, and it became part of his legacy when we sang it together at his funeral.
The gift of accompaniment is the essence of the incarnation. “I fear no evil, for Thou art with me.” Perfect love casts out fear in the act of walking with one another at birth, through life, and at life’s end.