Benton is a 9-year-old patient with a diagnosis ofterminal-stage Ewing’s sarcoma, a rare type of bone cancer. He hasthree sisters who are 3, 6, and 7 years old and are presently beingcared for by his grandmother. Benton’s father is self-employed andworks long hours while his mother is a stay-at-home mom taking careof Benton full-time. Both parents have high school diplomas.Benton’s family belongs to a small nondenominational rural churchand his parents express strong faith in the word of God.
Prior to his developing his current illness, Benton was ahealthy child and did not regularly see the physician as the familydoes not have health insurance. Two years ago, Benton began limpingand complaining of pain in his right lower extremity. The familyinitially attributed the limp to a playground injury, however, thelimp and pain persisted for 3 months. He was finally diagnosed withEwing’s sarcoma and underwent an above-the-knee amputation. Despitesurgery and two years of unsuccessful chemotherapy, his conditionhas worsened.
The physician has discussed Benton’s poor prognosis with theparents and is now recommending comfort care and hospice measures.The parents refuse and say they want everything possible to bedone. The father conducts nightly prayer sessions at Benton’sbedside to affirm that God is healing Benton. Although Benton asksthe physician whether he is going to die, his father refuses toallow the physician to answer this question. The mother, whoappears less confident about recovery, is there 24 hours a day. Shesupervises Benton’s care relentlessly, at times irritating thehealthcare staff with questions and demands. She keeps a notebookrecord of her son’s care, including medications, times of care,intake and output, and personal assessments. Although Benton usedto have friendly conversations and friendships with the healthcarestaff, he now appears frightened and remains quiet.
The healthcare staff has become increasingly concerned about thecorrect action to take in this situation.
What do you believe is the correct action to take at thistime?
