A surgical liaison nurse at Boston Children’s Hospital found herself caught between doing what was best for her patient and his family and the rigid rules of the operating room suite. She followed the hospital’s rules, but then, together with the patient’s family, helped turn the old policy around by explaining why the rule needed to change.
The ethical dilemmas the liaison nurse faced arose when the mother of a baby who was dying asked to be with him in the operating room. The baby had unsuccessfully undergone heart surgery and could not be removed from the heart-lung machine. The mother wanted to go into the OR and be with her child when he died.
“The nurse told the mother she could not go into the OR, as anyone would have,” says Christine Mitchell, MS, RN, FAAN, director of ethics at Boston Children’s Hospital and associate director of clinical ethics at Harvard Medical School in Cambridge, Mass.
The parents were allowed to see their baby after he died and his chest had been stitched back up.
The next day the parents returned to the hospital and paged the liaison nurse. They told her they wanted to see the baby again before returning home, Mitchell says. The nurse told the family to meet her in the chapel. She then went to the morgue, warmed the baby’s body, wrapped him in a fresh blanket, put a cap on his head, and carried him to the chapel.
The parents held their baby’s body for about an hour, talking about him and what had happened the previous day. Eventually they said their final goodbyes and went home.
A few weeks later, they wrote the nurse, thanking her for what she had done for them but restating their sorrow about not being with the baby when he died.
A plan develops
Still disturbed by the experience, the nurse went to see Mitchell, asking if there was anything that could be done. Mitchell says she suggested they discuss the experience with the OR governance committee and the ethics advisory committee. She also asked the nurse to call the baby’s parents and invite them to the discussion. The parents accepted the invitation and told the nurses and physicians why she needed to be with her baby when he died.
“We now have a policy that allows parents to be with their children in the OR [in those rare instances when a child dies in the OR and the parents want to be there],” Mitchell says.
Mitchell told this story during her presentation of the “Evolution of Moral Responsibility in Clinical Practice” during the Massachusetts Association of Registered Nurses’ annual spring conference, which focused on ethics in nursing practice. Nurses, she told the audience, are often caught in the middle between their many responsibilities to patients, physicians, hospitals, and their units.
“This can be a difficult place from which to assess the right course of action,” Mitchell says.
In the majority of cases, what patients, their families and physicians want is the same and does not conflict, she says. If nurses suspect an ethical issue is developing, they should talk about what they are experiencing during clinical rounds and with team members to determine what other people think about the situation at hand.
“Is what you think ought to be done in this situation and what others think ought to be done in synch?” says Mitchell.
The trigger word for ethics is “ought (or should),” as in ought we be taking this particular action or ought we be making this decision, Mitchell says.
“The important thing,” she says, “is for nurses to listen to their inner voices and ask themselves, ‘Are we doing the right thing?’ Pay attention to that voice.”
Have frank conversations
Often nurses are reluctant to openly address an ethical issue, Mitchell says. Instead they will tell the family what questions to ask the physician or that they should request an ethical consult. This is easier than confronting physicians directly.
Nurses are more comfortable raising ethical issues when they work in hospitals that value the input of nurses in determining patient care, Mitchell says.
Mitchell encourages nurses to think in ethical terms and says it took her a long time to do so. “I hope it doesn’t take new nurses as long as it took me to figure out what we ought to be doing.”
Patient advocacy alone is not enough to do what is best for patients. “When you intensify time and relationships with patients, you get to the heart of things that patients and family are really dealing with,” she says.
Early in her nursing career, Mitchell cared for a boy with leukemia whose parents forbade the staff to tell him about his diagnosis. As she came to know the boy better, he one day said he was glad he didn’t have a life-threatening disease such as leukemia. “Wouldn’t it be awful if I had something like leukemia?” Mitchell says the boy told her. “I was horrified. I had no idea what to say.”
What Mitchell said was something like, “What makes you say that?”
Mitchell calls this attempt to avoid answering the question “the nursing duck.”
“We used to just duck the hard, ethical questions because we were not sure what nurses’ responsibilities to patients were when it came to telling and talking about their diagnosis and prognosis,” she says.
Today she would respond differently. “I should have replied, ‘Are you scared and do you want to talk about it?’ I had only that moment to talk to him. I could clean up the mess later.”
Science and technology tend to drive the ethical issues nurses encounter in their practice, in part because technology is often assumed to be beneficial to patients without hard evidence to prove it.
New technologies that are already causing ethical questions include ventricular assist devices and preimplantation genetic diagnosis, Mitchell says.
“As we get new technology, we assume it is good for patients before asking if we should use it and if it is actually beneficial,” Mitchell says. “As our capacity to do more for patients through technology grows, we then have to ask, should we?”
Patient who smokes: A home healthcare challenge
One of the greatest safety risks to home healthcare patients is the risk of fire in the homes of those who are on oxygen therapy, says Carol Bourne, BSN, RN, patient service manager at the Visiting Nurse Association in Boston.
This risk recently created an ethical dilemma for a VNA nurse who was caring for an elderly woman who was put on home oxygen therapy after a hospitalization.
The nurse educated the patient about the dangers to herself and other residents in the building if she smoked while using oxygen. The patient said she understood and agreed to have a no smoking sign placed on her door, says Bourne, who is a member of the VNA’s ethics committee.
“She did very well at first, giving up cigarettes, and her breathing improved,” says Bourne. But as time went by, the patient found it increasingly difficult to not smoke and eventually started lighting up again.
One day during a home visit, the nurse noticed the woman’s oxygen tubing had a brown substance on it and realized the woman had been smoking and dropped the cigarette on her oxygen tubing.
Upset, the nurse called the oxygen company and asked them to replace the tubing and tried to educate her patient about the dangers of smoking, not only to herself but to her neighbors.
The patient said she understood, but not long after began smoking again, even after she was given a nicotine patch.
Frustrated, the nurse brought the case to the ethics committee. After many hours of discussion, the committee decided the patient would be given a choice between continuing the oxygen therapy or continuing to smoke, Bourne says. She chose to continue to smoke. Eventually the patient’s condition deteriorated, she was rehospitalized, and brought to an LTC.
The ethics committee felt it made the right decision by considering the welfare of the larger group — the residents in the building — rather than just the welfare of the patient, says Bourne.
NICU nurses struggle with mother’s indifference toward baby
Calming anxious and distraught parents of premature infants is second nature to the NICU nurses at Beth Israel Deaconess Medical Center, Boston. But when a mother of a 25-weeks preemie showed little interest or concern about her baby, the staff found her indifference difficult to understand and they became conflicted about what to do.
The mother was a professional woman whose pregnancy, her first, had been achieved through in vitro fertilization. Yet when the woman was hospitalized with preterm labor, she rarely followed the advice of nurses and physicians to remain on bed rest and relax, says Susan Young, MS, RN, clinical nurse specialist in the NICU. Instead, she continued to work from her bed and place additional stress on the fetus, despite the NICU nurses’ appeals that she could harm her baby.
When attempts to stop premature delivery failed, the mother asked the medical team not to take extraordinary measures to save the baby, Young says. The preemie lived, but the mother showed little interest in his welfare. The nurses did everything they could think of to spark the womans maternal instincts, but nothing worked.
“She didn’t want to talk to the staff or social services,” says Young. “Her detachment was difficult for the staff.”
Her interest waned even further when the baby developed a bleed that resulted in some permanent brain damage. In fact, she was angry at the staff for saving the baby against her wishes. Ultimately, the mother chose to put the baby up for adoption, a choice difficult for the NICU nurses to comprehend, says Young.
The nurses had no choice but to accept the mother’s decision, says Christine Mitchell, associate director of clinical ethics at Harvard Medical School in Cambridge, Mass. “They tried to the best of their ability to support the mother and help her connect with the baby,” she says. “When that didn’t work, they had to help find the best outcome.”
A voice for a dying patient and his wife
The nurses of a surgical trauma intensive care unit recently served as the voice for a dying man and his wife so they could be together during the last few minutes of the husband’s life.
The patient was a middle-aged man who came to the hospital to have elective, but complex, surgery that could be complicated by his multiple medical problems, such as hypertension, diabetes, obesity, and sleep apnea, says Sharon Brackett, BS, RN, CCRN, a staff nurse in the Surgical Intensive Care Unit at Massachusetts General Hospital in Boston.
The patient arrived in the unit from the OR in precarious condition because he had started to hemorrhage, says Brackett. The man was not Brackett’s patient but she was in the room multiple times to assist because his condition was so critical. The man’s family was in the waiting room and had not yet been invited into the room to see him.
“Several of my colleagues approached me with their concerns for the family,” says Brackett, who also leads the unit’s ethics rounds.
The nurses thought it was important for the wife to be with the patient, especially because her husband’s condition was continuing to deteriorate despite maximal efforts. They were aware that several professional organizations and the hospital’s ED were in favor of this process, and they had seen family members be present with patients during resuscitation. In fact, just a few nights prior, a long-term patient on the unit had rapidly deteriorated, and his wife had been allowed into the room, where she spent the last few hours of his life caressing his face and speaking to him.
He died despite resuscitation, but his wife was able to share the last moments that he was awake. He had not been able to eat in weeks but they shared a cup of coffee (at his request) and memories of their life together. On the heels of this recent positive experience, several SICU nurses were voicing a desire to encourage a family presence in this currently evolving case. The medical staff needed to continue aggressive treatment to try to stabilize the husband and get him back to the OR, and they initially preferred that the wife not be present as this took place.
As the senior ICU physician went out to talk to the wife and again update her on her husband’s condition, the patient’s condition further deteriorated indicating impending cardiac failure. Brackett went to the waiting room to alert the physician to the patient’s sudden change in status and also used this opportunity to assess the situation and see how the family was coping. The wife was appropriately distraught about this life-threatening complication but appeared quite reasonable.
Again, her husband’s condition further deteriorated requiring CPR and defibrillation. It was clear he was now too unstable to move to the OR and preparations were initiated to explore his abdomen at the bedside to locate a source of bleeding.
The nurses approached the physicians about having a family presence at the bedside as the patient now appeared to be actively dying. They shared their assessment that his wife appeared able to handle the situation, and it was now even more important for her to be by his side. The physicians agreed, and the wife was escorted into the room, where she could sit by her husband’s side, hold his hand, and tell him that she loved him, even as resuscitation and preparation for re-exploring him continued. Although the team’s efforts to save his life were unsuccessful, he and his wife were able to share his last moments.
“It allowed her time to say her good byes, and allowed the team to witness a positive experience that would not deter their efforts to resuscitate further,” Brackett says.
Both cases were discussed during the SICU’s ethics rounds, in terms of what went well, what might have gone better, says Brackett. The multidisciplinary staff of the unit are also now reviewing the guidelines from various professional associations and are in the process of developing a new policy about family visitation during resuscitation, thanks to the advocacy of the unit’s nurses.