I wanted to lift up the administrative and clinical staff that have been working with a patient in pulmonary acute. This patient was a young 25-year-old male, who about 15 months ago was in an accident that left him quadriplegic. He needed a trach and vent intermittently and had been living in a MN nursing home. He had been requiring frequent admissions to the hospital for tx of pneumonia. And at times during these admissions had made his wishes known that he was considering comfort measure, but in the end, always agreed to continuing treatment. About three weeks ago, the patient was able to communicate through a series of yes/no questions, by raising his eyes upward for yes and shaking his head for no, that he no longer wanted to continue treatment. This determination occurred over about a one week timeframe. The family did not agree with this plan for comfort as Mom believes that he will walk again, despite neuro saying this would not happen. The patient had been deemed competent by neuropsych testing. Comfort measures were implemented, but the family was able to talk him out of this plan over the weekend and aggressive treatment was reinstated. The patient was now needing full-time vent. Staff had indicated that at times over the weekend, the family “bullied” the patient into changing his decision.

Last week, the patient again began making his wishes known that he did not want to continue treatment and began refusing bronchs, suctioning, oral care and antibiotics. Ethics and Palliative Care met with the patient on several occasions as well as with the mom by phone (she worked and couldn’t always be present in person). This was such a struggle for the nursing staff as they were torn between honoring the patient’s choices and knowing Mom wanted everything done.

The patient was clear that he wanted comfort measures. He agreed to allow his family to be present if they would support his choice. Otherwise, he did not want them to be present – indicating that it would be too hard on him. This was such a complex situation in which you can imagine the difficulty in making EOL choices when you can’t verbally communicate your wishes, but they are determined in a series of yes/no questions – asked repeatedly in a variety of ways to be sure you are understanding what is being asked of you…

Mom reluctantly agreed to abide by her son’s decisions and would share this with his siblings as well. We needed a plan in place to be sure that this vulnerable patient’s wishes would be honored but yet allow family to be present. Bridget and Sonja did an excellent job with their leadership. They followed up with staff to be sure they were supported during this time. They made sure the patient had 1:1 RN staffing so that if family didn’t abide by the patient’s wishes – to support his decision - and began trying to talk him out of it, intervention could occur to support the patient. Scripting was done for staff. Sonja exceeded expectations and actually stayed the night shift with the staff to be sure the transition went smoothly and staff felt supported. Dixie was the nurse working day shift and did a great job supporting the patient, allowing for his autonomy and supporting the family, as have other nurses who were assigned to provide care during the shifts. The patient died peacefully on Sunday. Bridget and Sonja followed up with the potential of further staff support through EAP debriefings.

This truly was a beautiful exemplar of team work – administrative, clinical and interdisciplinary – certainly filled with sadness, but yet satisfaction in knowing the patient’s goals of care were compassionately met and the family was supported throughout this difficult time.