AACN News—August 1998—Patient Maintained Dignity in Controlling His Care

Vol. 15, No. 8, AUGUST 1998

Julie Hydrusko, RN, BSN, CCRN, is clinical director of the medical ICU at Robert Wood Johnson University Hospital, New Brunswick, NJ. She received the 1998 Excellence in Caring Practices award, which is part of AACN’s Circle of Excellence recognition program.

Presented here is the exemplar submitted in connection with her award. The deadline to nominate yourself or a colleague for a 1999 Circle of Excellence award is September 1, 1998.

For more information, call (800) 899-AACN (2226) or visit the AACN home page at www.aacn.org.

By Julie Hydrusko

I began my professional career in critical care nursing immediately after graduating from a baccalaureate program in 1986. Throughout my career, I have held numerous positions including staff nurse, case manager, and currently nurse manager. I have always valued my role and privilege as a patient and family advocate.

It was in December 1995 when I realized that my peers also valued me in this role. During morning nursing rounds, the night nurse introduced me to the wife of a patient, Mr. H, by saying, “This is Julie. She’s the nurse I told you about. She can help you.”

My colleague provided a full report on the events surrounding Mr. H’s hospitalization as well as the family’s concerns. Mr. H was 70 years old and had a history of chronic obstructive pulmonary disease (COPD), bronchiectasis, lobectomy, recurrent purulent sputum, atrial fibrillation, and coronary artery disease. He was transferred to our facility with massive hemoptysis for bronchial artery embolization. A bronchoscopy performed at admission revealed a mass in his right lung, though the physicians were unable to differentiate it as tumor or blood clot.

Attempts to wean Mr. H from the ventilator were impeded by pneumonia, deep vein thrombosis requiring an inferior venal caval filter, and recurrent uncontrolled atrial fibrillation. After the family met with the physicians, a “do not resuscitate” (DNR) order was issued. Because there was little improvement or hope and because, when there were breakthroughs in sedation, Mr. H. gestured that he wanted the endotracheal tube removed, the family requested withdrawal of ventilatory support. However, the physician was uncomfortable fulfilling this request. I realized that this family was in crisis and needed my support to help them honor a dying man’s wishes.

Mrs. H was tired and emotionally distraught. I sat and talked with her about this man she had loved for nearly 50 years and how she desperately wanted to do what he asked of her. She described her pain, frustration, and confusion about the healthcare system for not allowing her to honor his request.

Mrs. H told me that she and her husband had discussed his desires regarding end-of-life decisions many times, given his extensive and chronic pulmonary disease. He had informed his family prior to this hospitalization that he would not want his life prolonged on a ventilator. The family had attempted to fulfill his wishes, but were thwarted by the physicians, who wanted to do more.

I arranged a meeting with the attending physician, the primary nurse, me, and his wife, son, and daughter. We began our meeting with an overview of Mr. H’s stormy hospital course and his current condition. The physician attempted to persuade the family to try additional antibiotic therapy and other interventions so that we could wean him off the ventilator. The discussion went on for more than an hour. The family appeared confused. I asked the physician to describe the potential success of all these interventions. There was little hope for a meaningful and lasting recovery.

The physician expressed concern because he did not know firsthand the patient’s wishes—only what the family relayed. Because of Mr. H’s sedated state, the physician was not comfortable withdrawing ventilatory support. I recommended that we temporarily discontinue propofol, because Mr. H was not in distress but merely sedated for general comfort. I pointed out that once he was free of sedation, his family and physician could communicate with him about his prognosis and his desires regarding continued management. The physician was agreeable. I suggested specific questions for the family to ask Mr. H and guided them through the events that would follow.

We then moved to Mr. H’s room, where the primary nurse discontinued the propofol. Mr. H awoke and was surrounded by his family. The family posed questions that he could answer by nodding or gesturing. Mr. H definitely appeared to be capable of making decisions. When his family asked him whether he wanted the doctors to remove the ventilator, even though he would die, he nodded he did. He was asked if he wanted to be medicated with a drug such as morphine. He nodded “yes,” and then waved goodbye. It was clear to all of us that Mr. H was in charge and had made his own decision on how he wanted his care managed.

A morphine drip was started to prevent suffering during and after extubation. Once sedation was achieved, Mr. H was extubated. His family remained at his bedside. Mr. H died in less than 30 minutes. His family members, though they were grieving, was comforted by the fact that they supported his desires at the end of his life.

I, too, was comforted in knowing that I had helped a family and a patient actualize an important decision. In critical care, you do not always experience happy endings. But I find solace in endings such as this, when control and dignity are maintained for a patient and family. Nursing is about caring and supporting. My colleague charged me with an important duty on that day and I feel honored that she recognized my abilities to help Mr. H and his family.