Religion, Spirituality, and Culture in Advance Care Planning
A STORY OF BELIEF AND END-OF-LIFE CARE DECISION MAKING
Henry and his wife, Virginia, had just moved into a retirement village in the same area as their son, Richard, and his family. Each of them had multiple health problems and Virginia was getting frail. Henry was hospitalized suddenly for a severe sinus infection and became unconscious within 48 hours. Virginia and Richard agreed for the doctors to intubate Henry just to help his breathing as the infection resolved. The other son, John, from Washington State, and their daughter, Vicki, from Vermont, came to visit their father, but when the doctors indicated it would be a while until their father's infection was controlled and he regained consciousness, they decided to go back home and return when he was better.
However, 10 days later, Henry was still unconscious and on a ventilator. The doctors wanted to insert a “peg tube” so he could get nutrition, as Henry had been unconscious and unable to eat during his hospital stay. At first, Virginia thought this was a good idea, again, to get Henry through this rough time. But the night before the surgery, she had the distinct sense that she should not sign the consent for surgery; she didn't think Henry would want this. It didn't seem to her that Henry was getting better. She wasn't even sure he had known her or responded to her presence during the past 5 days. She and Henry had never spoken about what to do in this type of situation. While they knew they were getting older, they had not anticipated anything like this.
John and Vicki couldn't believe their mother would even consider not giving their father the nutrition that he needed to survive. They were sure their father would want to live. Besides, John was a devout Christian and was certain that not providing nutrition is contrary to the Church's teaching.
Virginia's pastor and Richard were with her that morning as she approached her husband's bed to try to discern what to do. The pastor had listened patiently to each of them as they expressed uncertainty as to the right thing to do. The pastor had also waited with them through the last 10 days that had been a roller coaster experience, with each doctor providing conflicting messages each day: “His blood gases are better today”; “His hemoglobin is dropping today”; “The infection seems to be improving today”; “He shows no signs of regaining consciousness.” Richard knew his father had not shown any signs of life during the past week. His father had been a happy and active person all his life, and he would not want to lie here like this. The pastor helped them review the surgeon's report that stated Henry's condition was grave and he might not survive the surgery, and encouraged them that God is with them and hears their pain and uncertainty. The pastor arranged a conference call with Vicki and John, who were still upset that this would violate Church law, and told them their father couldn't survive without surgery. The palliative care team met with them to discuss the events of the past 10 days, reviewed the relevant medical information, and the continued deterioration in Henry's condition. There was considerable uncertainty that Henry would survive surgery.
After several hours of discussion and reflection, Virginia did not sign the consent for surgery, as she didn't want Henry to experience any additional pain or suffering. The palliative care team decided to give him what nutrition they could through IV feedings. They cared for Henry and he died peacefully 3 days later, never regaining consciousness.
This story illustrates some of the very difficult issues that families face when the medical prognosis is uncertain, family members disagree, religious teaching is interpreted differently by family members, and the very sick family member has not engaged in advance care planning (ACP). This chapter examines the importance of spirituality with serious, life-threatening illness and impending death, as well as how spirituality and religion may inform decision making around issues of medical treatment and intravenous feeding, ACP, and supportive care.