Ethical Issues?

Maybe I'm being obtuse - what's the ethical issue for family members being present at a code?

Some practitioners are concerned that having family members present at a code may result in futile treatments being continued long after they otherwise would have been stopped, which could be viewed as causing harm to the patient. There are concerns too about family members overriding the wishes of the patient by insisting that resuscitation be undertaken when the patient has indicated they do not wish to be resuscitated, only now they're unconscious and have no say. This is harmful to the patient and ignores their right to autonomy. Sometimes the main impetus for ongoing resuscitation comes from the practitioner's fear of being sued by the family members witnessing the code. And some worry that having family members present may in some way impede their actions and result in a failed rescue, which is harm to the patient. I'm sure others out there will have more to say on this.

We experience ethical dilemmas in our unit all the time, in part because we work with kids. Their substitute decision makers are not always working with the same information that we have, and they let emotion rule. Some of the fault lies with our medical staff, who often disagree on approach, and a couple of them will offer hope in terms that confuse parents into believing that little Billy will be just fine, and still BE little Billy when it's all over and done, by taking things out of context and turning them into a focus for that hope...

Take a recent patient we had who passed away earlier this month on day 28 of her PICU admission, two weeks after she had declared herself ready to go. She had a genetic disorder that is usally fatal within the first two to three years of life, but had reached the age of seven. She developed an overwhelming infection and arrested on the ward, to be "successfully" resuscitated and transferred to us. The treatments needed to maintain her blood pressure combined with the underlying disease process caused her to infarct her feet, her lungs and her bowel. She also had a thrombosis in her left ventricle. She didn't tolerate handling so she developed a huge pressure injury over her sacrum. Her kidneys failed; her skin split from the pressure. Her liver failed; everything bled. On day 10 she had a second arrest and again was brought back. One of our docs had developed a nice rapport with the family over the first few days of her admission, and by day 11 had prepared them for the inevitable. Then another of our docs took over as attending for a couple of days. His method involves enumerating "all the things we haven't tried yet" and then trying them. He also will select some minor improvement in condition and blow it up into something resembling a miracle... "Oh, her liver function looks a little better today." The parents hear, "She's getting better." Anyway, this child ended up on CRRT on day 20, had a drain placed to decrease her ascites and was transported several times for CTs that showed continuing deterioration of her lungs, bowel and brain. Finally, when it became obvious that her bowel had perforated, the same doc who held out so much hope spent the better part of a day arguing with the surgeon who had grave concerns about taking her to the OR for a look. Then when he got his way, he signed over and went home. The unlucky doc who took over was called to the OR early in the case to see what they'd found, and she was closed up and returned to the unit. He dealt with the family and filled out the paper work after she died. And she didn't go with any dignity; she was naked except for a diaper and a number of bloodsoaked dressings, her poor little black feet dangling from her mom's lap. She needed a continuous infusion of full-strength epinephrine to get her off the bed and onto her mom's lap with a heartbeat. It was horrible. All of us involved were so disgusted with the way things were handled. Sadly though, it wasn't the first time we've seen it and we know it won't be the last. We've taken our concerns to the hospital ethics committee before and had meetings with the doctor and got absolutely NOWHERE. It has caused some of our very experienced nurses to leave. Is there a solution? I don't know.