Pain and symptom management are central to end-of-life care. When a patient does not allow us to do all we can to control symptoms, it can be very unsettling. We may feel frustrated in witnessing suffering that seems unnecessary and have difficulty understanding why the patient is not willing to receive what we have to offer.

Often we use the terms “pain” and “suffering” in interchangeable ways. However, as Kabat-Zinn points out, there can be important differences between them. He writes that suffering “involves our thoughts and emotions and how they frame the meaning of our experiences.”[1] Cassel defines suffering as "the state of severe distress associated with events that threaten the intactness of the person."[2] This particular patient seems to endure more suffering from the emotional and spiritual pain related to her son’s salvation than from her physical pain. In fact, she has found a way to give meaning to her physical pain by believing that she may be able to use it to help her son. So, any attempt to help her manage her physical pain needs to be accompanied by attention to her emotional and spiritual pain about her son. It also must address her belief that her physical pain is a sacrifice that may benefit her son in death.

O’Rourke and Dufour discuss a very similar case about an elderly woman with congestive heart failure. She believed that “her physical pain would be the sacrifice that would help her [dead] son get to heaven.”[3] In this case study, the team’s actions proved to be helpful for the patient and her medical care. They focused on:

• talking with the patient about why it was so important for her to prevent the team from helping with her pain and shortness of breath;
• getting the patient’s permission to share the story behind her reluctance with the team and her family so they could work through it together;
• working with family members to find ways for them to assist the patient’s dead son get to heaven (e.g., through works of charity); and
• conversing with the chaplain about scripture stories that present God as loving and forgiving.
  

By supporting the patient’s beliefs and giving her opportunities to expand her understanding of her faith, the team was able to work through the patient’s resistance to pain medication.

References

1. Kabat-Zinn, J. Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. New York, NY: Dell; 1990.

2. Cassell, EJ. The nature of suffering and the goals of medicine. N Engl J Med. 1982;306(11): 639-645.

3. O’Rourke M, Dufour E. Embracing the End of Life: Help for Those Who Accompany the Dying. Toronto, ON: Novalis; 2012.