One of the earliest ethical problems I encountered in acute care, and one I often use for educational purposes, involved a woman I’ll call Linda. Linda had end-stage liver disease (ESLD for short) and had been admitted for failure to thrive due to poor nutritional intake and concurrent hepatic encephalopathy. She was listed for transplant but her MELD score (the scoring system specific to liver transplant) wasn’t high enough to put her at the top of the list yet and her poor nutritional status would decrease her eligibility. When you work for a transplant center, you see a lot of patients waiting for their eligibility scores to put them at the top of the list. Sometimes the patients die before they can be transplanted and sometimes they live at the hospital waiting for an organ because they are too sick to go home to wait.

Anyway, Linda was very encephalopathic and was confused with periods of lucidity. She had lactulose ordered around the clock and sometimes I’d go in to give it to her and she’d cry and beg me not to make her take it. It was heartbreaking, to be honest. Those periods of lucidity,tho, they were the tricky part for me. I was able to get the team to request a consult by the psychiatrist to evaluate her decision making capacity but by the time the psychiatrist got to the bedside, Linda had returned to her encephalopathic state and it was impossible to ascertain her true wishes. Besides, she had willingly listed for transplant so we knew that transplant had been her goal…at least it had been at the time.

Her adult children frequently took turns staying with her and would provide encouragement and remind her that her goal was to get a liver transplant so she had to take her medicine. Her encephalopathy made it hard for her to feed herself so we put a nasogastric feeding tube in to provide enteral feeding to get her weight up and improve her nutritional status. But over the course of about 10 days she progressively deteriorated and ended up in the ICU. During this time her husband, I’ll call him Ed, would come visit and he was Linda’s surrogate decision maker. Ed and the kids didn’t really get along for reasons I was not privy to and the tension in Linda’s hospital room was palpable by all of us who entered her room for patient care. Ed said he just wanted what was best for his wife and he could see she was deteriorating. The kids wanted their mom to get a liver transplant and be able to go back home and return to her “old self”. They wanted their mom to see her grandchildren grow up and attend life events like birthdays, graduations, and weddings. They were not willing “to give up” and insisted on escalation of care to the ICU.

Linda spent a few days in the ICU and then returned to the floor, still full code and looking so sick and frail. Thee kids insisted the healthcare team do everything possible to get their mom to transplant. Ed disagreed and felt his wife “wouldn’t want to live like this anymore.” From a healthcare perspective, it was highly unlikely that Linda could recover and make it to transplant. In fact, even if her family agreed to take her home on hospice, it seemed unlikely she’d survive the short trip home.

Thankfully, the ethics committee was called to meet with the family and after much mediation between Ed, the kids, and the attending physician, it was decided that the focus would be on comfort. Linda would be placed on hospice, the feeding tube removed and the only medications given would be for symptom management such as dyspnea, pain, and excess secretions. Linda died the next day. I was at work, taking care of her and trying to guide the family through what to expect during the dying process. The kids were at the bedside and Ed sat in a chair outside the room in the hallway. Things did not go well. The kids blamed Ed for “killing their mother” and Ed…well, it broke my heart that he sat outside the room instead of being by his wife’s side as she took her last breath. I brought him some more tissues and listened as he told me he had just wanted to do the right thing for his wife even if it meant her kids “hated me for it.”

Linda’s story often comes to mind when I think about the balance of the 4 principles. The beneficent action on the first day of her hospitalization: lactulose to clear the ammonia and trying to encourage caloric intake. But were those efforts still beneficent 5 days into her hospital stay? At 10 days? At 14 days? Was it beneficent to give lactulose despite her refusal and periods of perceived lucidity? Did she have the autonomy to change her mind about transplant when she was so encephalopathic? Ed was her DPOA and as her surrogate, he had the right to decide to stay the course or change to comfort measures only. But he deferred to Linda’s kids and allowed treatment to continue. Who’s to say if that was the right thing to do. And until her code status was switched to DNR, I was putting lactulose down her feeding tube and cleaning up the torrents of liquid stool that oozed past the rectal tube placed in the ICU. At the end, her nutritional status was so poor and despite a fancy hospital bed with constant turning, Linda had developed a pressure sore to her sacrum and the constant stooling had excoriated her perineal area to the point that her skin sloughed off when I cleaned her, no matter how gently I wiped away stool. If her heart had stopped, I would have begun CPR on her frail little body.

At the time, I felt like I was torturing Linda and the days leading to her transfer to the ICU made me dread going to work. Her return from the ICU was not much better but at least I no longer had to provide nursing care that felt like I was doing more hard than good. I didn’t know at the time that patients like Linda were going to become more frequent on my unit and I wasn’t prepared for the feeling of moral distress that Jameton originally described in 1984 as the “feeling of knowing the right thing to do but being unable to act upon it.” This experience with Linda was just the beginning of my eventual foray into both moral distress and burnout.

Do you remember your early encounters with ethical problems?