Case: Symptom Management for a Noncommunicative Woman Dying in the ICU
L.J. was a 37-year-old woman with recurrent cutaneous T-cell lymphoma initially diagnosed 8 years prior. At that time, she was treated with multiple lines of chemotherapy and stem cell transplant, which successfully brought her into remission. She lived disease free with her husband and child for 6 years. Shortly after her child's 10th birthday, L.J. was told she had recurrent disease when she presented with new lesions and persistent fevers. After reinitiating chemotherapy, she was admitted to the hospital for neutropenic fevers that eventually led to septic shock requiring transfer to the ICU. In the ICU, despite multiple attempts to reverse the infectious process, L.J.'s condition worsened, and she developed multisystem organ failure. She remained intubated in the ICU for weeks—requiring high levels of daily care including dressing changes for her multiple cutaneous lesions. This would cause grimacing and agitation documented by the nursing staff. In the early days of her ICU admission, L.J. was placed on continuous infusions of opioids and sedatives and prior to dressing changes would receive bolus doses as needed.
As L.J. continued to receive aggressive interventions in the ICU without improvements in her clinical condition or mental status, the palliative care service was consulted to assist with goals-of-care discussions. The oncology team, ICU team, and palliative care service were all in agreement that the patient's condition was irreversible, and she would likely not survive this ICU admission. Multiple meetings were held with L.J.'s husband, who was her designated health care agent, and other family members. Ultimately, L.J.'s husband understood the critical nature of L.J.'s condition and was agreeable not to attempt resuscitation should her condition worsen; however, he was not amenable to withholding or withdrawing care stating, "I can't give up on her. I'm still hoping for a miracle." An order to allow a natural death was placed in the chart, and ongoing support and daily updates were provided to L.J.'s husband. As L.J.'s condition continued to deteriorate, so did her mental status, and she was no longer exhibiting nonverbal cues of pain or agitation. The ICU team, in a final attempt to awaken L.J., slowly tapered her sedation, including opioids, without success. Despite documenting the absence of pain and agitation in L.J.'s chart using validated scales, the nurses still felt that it was their obligation to provide pain medication prior to dressing changes, as this had always been a source of extreme pain for her. Because of her tenuous blood pressure, the ICU residents and fellows on call overnight did not feel comfortable giving L.J. medications that could potentially lower her blood pressure further. The evening L.J. died, she was given a very low dose of opioid twice, spaced 3 hours apart when she had previously required almost 4 times that amount for pain management.