They Don't Listen to Me

Robert Washington

I recently went to the hospital to assess a young woman for hospice acute inpatient care. Rating her pain 10 out of 10, she described it as coming from three sources—a Stage IV decubitus sacral ulcer, metastatic ovarian cancer spread throughout her abdomen and burning sensations running down her legs. I assured her that she could be helped, i.e. her pain could be significantly reduced within days if admitted to the inpatient hospice unit.

Although grateful to hear that help was on the way, she felt compelled to tearfully share that her greatest distress came from the fact that “they don’t listen to me.” She went on to explain that she pleaded with the nursing staff to reduce pressure on the ulcer yet they continued to ignore her, moving her by dragging the linen beneath her body. Her anguish was palpable as she cried: “The doctor announced that I’m going to die, but I’m not ready to give up.”

I explained that the task of hospice is to “gentle the journey” and reiterated that her pain could be better controlled—that very, very few people have to suffer pain of that magnitude in 2008. I further explained that the hospice philosophy is person-centered and based on informed consent. Thus, nothing would be done to her without her permission. This included, for example, moving her to change her bed linen. Finally, I told her that no one has any right to take away her hope and that she should go on believing that she would improve despite the view of the medical profession. I explained that people in her condition have the challenging tasks of both preparing for death while believing in a miracle and that she, like others, could do both.

This discussion took place in the presence of her siblings who had felt helpless watching her suffer. I used the opportunity to stress that hospice views the patient and those who love her as the locus of our concern—that we would provide emotional and spiritual support to her and her siblings and support them through our bereavement team for 13 months following her death. I clarified with all of them where the patient would go after her pain was better controlled and assuming she did not experience further decline. We discussed the pros and cons of a “Do Not Resuscitate Order,” and the patient opted to have one.

With approval of the inpatient director, the patient went to the unit for symptom (pain) management and died peacefully after being converted to Methadone for pain relief.

Tension and anger were no longer compounding her pain. She felt that hospice professionals were listening; she relaxed and allowed nature to take its course.

Robert Washington, Ph.D., MDiv