When Patient, Family Differ at End of Life
Ethics Narrative
Nurses are compelling story tellers. Public story telling among nurses helps them make ethical distinctions in clinical practice visible and creates opportunities for discussion and for learning. Even the story teller learns from telling the story.
Nurses’ most memorable stories include situations where they have made a difference or where breakdown has occurred. These situations often include questions of ethics— what was the right thing to do or what was good to do in a particular situation? As our technological interventions have multiplied, so has our need to address the questions of ethics in practice. Put another way, “There’s lots we can do, but should we do it?”
First in a series of narrative features to appear in BWH Nurse, this story is told by Peggy Bernazzani, RN, Surgical ICU, followed by comments from Martha Jurchak, PhD, RN, director of the Ethics Service. This feature is offered to create opportunities for ongoing discussion and learning.
I’d like to share a story about a patient of mine, called Mrs. CC. Even though I took care of CC for two months, I would truly only come to know her and who she was through her children. On CC’s best day, she was lethargic, would respond with a nod of her head to general questions, look shocked and bewildered when oriented to time and place, occasionally smile when prodded, would never initiate any conversations, and rarely exhibited any spontaneous movement, not even a turn of her head. Essentially during all the time of her admission, she had only two requests of me. One morning after greeting her, she mouthed that she wanted her clothes so she could go home, and after I reoriented her and explained that her belongings were sent home with her children six weeks earlier, she then, with much insistence, demanded her shoes! She wanted out!
So as it was, CC was an 83-year-old female, a widow for many years, a mother of ten children, a grandmother of 32, and a great-grandmother of six. She was a constant, vigilant, vibrant presence in all of their lives. She was the pretty lady with the striking azure eyes proudly smiling at the college graduation of her daughter, gracefully waltzing with her son at his wedding, zealously grilling at the family barbecue, gently embracing the newest grandchild at his Christening, and stoically posing as the matriarch in the center of all her children at the family reunion.
She hadn’t been feeling well for several weeks, complaining about abdominal pain secondary to severe constipation. A colonoscopy was recommended to clear her of a high colonic impaction. CC didn’t want the treatment, sharing with her family that if this was the way the Lord was going to take her, let it be. Her son felt that it was a simple enough remedy to relieve a relatively uncomplicated problem that would maker he feel better, so he convinced her to have it done. CC suffered a perforated bowel warranting emergency surgery. Her initial hospital course evolving over four weeks, would require two surgeries, an E lap with left hemicolectomy and then, a re-exploration, wash out, small bowel anastomosis, colostomy, and abdominal closure with mesh. Her recovery would be stalled by failed extubation, aspiration with chemical pnuemonitis, ARDS with PNA, and intra retroperitoneal bleed.
One month after the initial insult with her condition deteriorating, the family requested that she be transferred to BWH for further management. Why BWH? Eleven years earlier, a 72-year-old CC had undergone a CABG x 4 with MVR at the BWH. Suffering multi-system complications, she spent three months inpatient and three more months in rehabilitation recovering, and she did. The family felt strongly that if she would have a chance at survival, the BWH was the best place for her. What they didn’t share with the staff was that their mother, on the day of her discharge from rehab 11 years earlier, went directly to her lawyer and had a living will drawn up, witnessed and notarized stating her wishes that she did not want her life sustained by machines if her condition was irreversible.
There would be no miracles for CC. In fact, her condition continued to spiral with a persistent ARDS escalating in an inability to ventilate her without high dose sedation, a resistant pseudomonas/kleibsiella PNA, renal failure, gi bleeds, and sepsis. For two months, attempts at treatment modalities were undertaken only to continually fail. There were several close calls when family was called to inform them that her condition looked grave that a decision needed to be made about her status. It was always left that she was a full code.
It was too much of a concession for them to have it any other way. The final two weeks of her life during which CC actively tried to die; exhausting efforts were made on a daily basis to explain to her family the futility of medical management. Frustration was paramount whereby ethically, as the medical professionals, we felt we were violating CC’s decision as stated in her living will, but this was not the family’s interpretation. They as a whole wanted us to try everything in that the only other alternative would be death. They would not accept the fact that their mother had no chance of recovery, and that we were cheating her of any semblance of a peaceful death by medical interventions, which would only temporize her condition, but not cure it. The impasse would continue for about two weeks. The family needed time.
We need to recognize our limitations. We cannot lose sight of the fact that our patients are part of a whole, and to consider them, we must consider their family. There can be no separation of this. We have only a glimpse of our patients compared to a lifetime of vision family members have. It takes time for families to make their peace, and not being able or privy to understand the complexities of our patients’ many relationships; we need to be respectful, mindful of our place.
In the end, CC bore no resemblance to the pretty lady in all the family pictures, but there remained one recognizable feature. Her beautiful azure eyes shone tear-filled from all her children and grandchildren who surrounded CC with all their love on the day she went home.
Question: What is the best way to handle a situation when a patient’s family wants everything done to maintain their loved one’s life despite the fact that continued medical management goes beyond what the patient herself would have wanted?
Ethics Narrative Commentary
By Martha Jurchak, PhD, RN
Director, Ethics Service |
Ethics asks us to answer the questions “What is good?” or “What is right?” We figure out what is the good or right thing to do from our roles as daughters, mothers, brothers, colleagues, nurses and doctors. Our figuring out is informed by what we think and how we feel about a situation.
One of the central ethical questions raised in this narrative is: How do we honor the advance directive wishes for a patient at the same time that we recognize and respect the needs of the family members, especially as they face loss and grief?
In this situation, Peggy encouraged the daughter to step forward with the living will. Her ability to do this provided a defining shift in Mrs. CC’s care. The next challenge Peggy faced was communicating this information to the team and the family, then bringing both together in order to make decisions about the treatment plan. It was clear what Mrs. CC’s wishes were—now how do we honor them and help the family bear their grief and loss, and perhaps anger, jealousy and fear, as well?
Peggy’s consistent relationship with the patient and family is what saw them through multiple rotations of attendings, house staff and fellows. She was an anchor for building and maintaining a well of trust between the family and the team that made hard conversations possible.
There is no substitute for the consistency and commitment it takes to know the patient and build the relationship. The foundation of a trusting relationship is what holds the team and family in the shared decision making they are expected to do, often feeling unprepared and even at times unwilling. The relationship that Peggy built with this patient and family made her a credible, caring, and reliable source of information and solace as the family faced the unhappy truth of Mrs. CC’s wishes and her decline. There is no substitute for this good. |