By Charles W. Sidoti
I recently participated in a goals-of-care family meeting regarding a 73-year-old female patient in the ICU. The patient’s son had been told that his mother had a poor prognosis for any meaningful recovery from her coma due to anoxic brain injury, without evidence for improvement. The patient also suffered from other serious and advanced co morbidities. One option would include the removal of artificial life support in favor of a comfort-focused plan of care. The other option would require a tracheostomy to continue artificial life support on a breathing machine and a tube for nutrition.
The palliative care physician, who would be leading the family meeting, felt that my presence might be helpful, because for religious reasons, the patient’s son considered that removing life supports was equivalent to causing the patient’s death. However, a tracheostomy and placement in a long-term care facility for artificial life support to continue was something that the son knew that the patient “would never want.”
The patient’s son was experiencing moral dilemma between making a decision that he knew his mother would not want (continuing artificial life support) versus his religious beliefs. His understanding was that by agreeing to remove artificial support, he would be “killing my mother.”
This type of moral dilemma is not the same as moral distress, but its implications reached beyond the patient and her family. If we could not agree on a medically appropriate plan of care, the result could be moral distress involving the medical staff. When a comfort-focused plan of care is indicated for a patient approaching the end of life, but the legal decision-makers insist on aggressive curative treatment that only prolongs the suffering of the patient, the medical staff must perform treatments and procedures that have little or no chance of achieving their intended benefit. Moral distress contributes to nurses and other medical professionals feeling a loss of integrity, and often causes nurses to leave the work setting and profession. And conferences such as the one I had been called to often end badly, from the staff’s point of view.
I arrived a few minutes early and noticed the son was in the patient’s room. I introduced myself as the hospital chaplain, and he warmly welcomed me. He was holding a Bible in his hand. The son shared with me that his mother had been a very prayerful woman her whole life and a minister in her church. He also said he was a minister in his Pentecostal church. Shortly afterward, the palliative medicine doctor arrived and the three of us went to the conference room.
My impression of the patient’s son, who appeared to be in his late 40s or early 50s, was that of a sincerely religious and friendly person. I perceived that he had strong religious convictions, but I did not sense that he was going into the family meeting with his guard up.
I suggested that we begin with a prayer. The patient’s son responded, “Yes! Let’s begin with a prayer. I think this is great.” We all joined hands and I led a Christian prayer asking for God’s guidance and wisdom in our discussion and blessing upon the patient and her family.
The physician then very compassionately began to review the patient’s current neurological and medical status, as well as estimating her prognosis for meaningful recovery and survival. The son was not surprised to learn that it was extremely unlikely for his mother to regain any significant neurologic function. He spoke about his religious beliefs for several minutes, concluding with his belief that if he agreed to discontinue artificial life support, “I will be killing my mother. I can’t do that. I believe that we have to do everything.”
I asked, “Did you and your mother ever discuss what she would want if she was ever in this type of condition?” He replied, “Yes, I did, we have talked about it. She said that she would never want to be kept alive by machines. But I can’t kill her. I wish she would just die in her sleep and there would be no decision to make. Oh (laughing nervously) I don’t mean that … can I say that? And if someone else were to make the decision to kill her, I would not want to know about it.”
I gently interrupted, saying, “You need to unburden yourself. You need to understand that in choosing to withdraw artificial life support, no one is killing your mother — not you, and not the medical staff. That would be called euthanasia. It is illegal in this state, and it has nothing to do with the decision you are being asked to make. Death is a natural part of life, and everyone is going to die at some time. Today we have wonderful life-saving technology, but it is important to understand that we have a responsibility to use it wisely, for situations where there is a reasonable hope of meaningful recovery — and also with humility, acknowledging that we are not God. The decision to be made today is whether to artificially extend the dying process, or to acknowledge that the dying process, already taking place with your mother, is irreversible, that it is a part of life, and choose to let it be.”
I asked him what he thought his mother would want if she could choose for herself. He replied, “She would want us to let it be. She would never want this.” We all laughed because we realized that we had quoted the Beatles song “Let It Be.”
The son asked what would be involved in removing artificial life support. The physician explained in detail the compassionate weaning process, explaining how the patient’s comfort becomes the primary focus of care. The patient’s son asked if the removal of life support could take place on Sunday at noon, to allow for family and church members to be present. The physician agreed.
It was clear that the meeting was over, and the physician suggested that we conclude with a prayer. The patient’s son offered to lead the prayer. We all joined hands and the son gave thanks for the life of his mother and for the medical staff. After the patient’s son had left, the physician asked me to stay in the room to debrief.
The physician and I looked at each other and said, “What just happened?” After a goals-of-care meeting when the patient is clearly approaching the end of life, it is not unusual that a surrogate decision maker chooses a comfort-focused plan of care. We both acknowledged, however, that it is unusual that a surrogate decision maker who cites religious beliefs would change his mind in favor of allowing the natural process of death to occur.
While the physician and I did a very good job in the meeting, I did not say anything that I do not ordinarily say to patients and families in this type of situation. I attribute the son’s change of heart to a quality of openness that helped him to evolve in his thinking with regard to his religious beliefs and EOL options.
Charles W. Sidoti, BCC, is coordinator of spiritual care at South Pointe Hospital, Cleveland Clinic Health System, in Warrensville Heights, OH. This article is adapted from a case study presented to the Cleveland Clinic Palliative Care Committee.
