CASE
Mary R. has a 9-year-old child (Elizabeth) with severe mental retardation. Elizabeth is blind and partially deaf. She communicates by moaning when she is in pain and smiling when she hears her mother's voice. She is fed via a gastrostomy tube and is nonmobile. Upon observation, Elizabeth is found lying in a baby carriage curled in a fetal position. She weighs approximately 30 pounds and appears to be about the size of a very slender 4-year-old child.
Elizabeth has come to the hospital for elective dental surgery. She has severe dental caries and needs to have her teeth removed. Other than her dentition problems, Elizabeth appears to be well a well-cared for child. Along with her mental retardation, Elizabeth has a congenital heart defect and cystic fibrosis. Mary states that when Elizabeth was born, the doctors said she would only live a few years. "She's out-lived everybody's expectations. She's my special girl!"
Mary has requested that Elizabeth be given a no-code-blue status during this hospital visit. She also wants to be present during her child's surgery. She states, "I understand that the anesthesia Elizabeth will receive is risky since her heart and lungs are so bad. I know she might not survive the surgery. But my child has suffered all her life, and I don't want extraordinary measures taken should she have problems. But if it is her time to go, I want to be with her during those last moments."
The hospital involved in the care of Elizabeth is a small community hospital. Other than the normal elective childhood surgical procedures, the operating room staff and physicians rarely provide care to children with major health issues such as that of Elizabeth. Hospital policy dictates that family members cannot be present during a patient's surgery, and although hospital policy states that a patient's code designation will be honored during surgery, the culture of the organization has been to guide the patient and family member to discontinue the no-code status while the patient is in the operating room.
The nurse, anesthesiologist, and physician have varied attitudes regarding whether and how Mary's requests will be handled. Regarding Mary's presence during Elizabeth's surgery, opinions range from not allowing Mary to enter the procedure room at any time, to allowing Mary to be present during anesthesia induction only, to allowing Mary to stay with Elizabeth during the entire procedure.
Also, although the healthcare providers appreciate that hospital policy requires code designation to be addressed before surgical procedures, there is diverse judgment as to what limited treatment should be (or should not be) provided. Realizing that Elizabeth will be intubated during the procedure, the team struggles with what measures should be instituted if Elizabeth's condition deteriorates during surgery. Questions regarding the administration of vasoactive medications and postoperative ventilatory support are a major concern.
To assist the team in dealing with these issues, the perioperative nurse educator initiated a hospital-based ethics committee consult. An interactive discussion was scheduled with the healthcare team, Mary, and members of the ethics committee. Although the ethics committee did not make the final decision regarding Mary's requests, it was able to facilitate a mutual agreement concerning Elizabeth's care.
Mary was allowed to be present in the procedure room during the induction of her child's anesthesia. Once Elizabeth's procedure began, the circulating registered nurse provided reports to Mary concerning Elizabeth's condition every 15 minutes through the telephone. An agreement was also made that should Elizabeth's condition deteriorate during the procedure, Mary would be allowed to immediately return to the procedure room to be with her child.
The team also agreed that other than intraoperative intubation and vasoactive medication administration, no other life-saving treatments would be initiated. Also, should Elizabeth's condition require postoperative ventilatory management, withdrawal of life support would be discussed with Mary. On the day of surgery, Elizabeth had no complications and returned home the same day with her mother.
DISCUSSION
Patient autonomy is generally regarded as a foundational tenet of healthcare in the United States today. The prevailing view is that as long as the patient has full disclosure of the various options, benefits, and risks and is competent to make a decision, whatever that decision is should be respected by the various healthcare providers. This translates to a respect for the beliefs and decisions of the patient and his or her right to make those decisions.
In theory, this is fine. The problem, however, happens when the healthcare providers have viewpoints that are differing from those of the patient, especially if the patient's decisions do not lead down the road to recovery. After all, most healthcare providers are caring persons. They want their patients to recover and go on to lead productive lives. Sometimes then, what seems to be the most basic decision over what the majority of the population considers as "simple procedures" can result in substantial disagreements, such as when someone declines treatment for appendicitis or a blood transfusion due to religious beliefs.
When the additional component of the inability of the patient to make his or her own decisions is added, many healthcare providers become even more entrenched in their position of what is "right" and "wrong." In this case, the conflict as to the appropriate decision is between the mother and providers.
One thing that must be guarded against is the projection of positions or beliefs onto the decision maker when these may be incorrect. It would be quite easy, for example, to project "caregiver fatigue" onto the mother. After all, she has been providing care for her child since birth. It is not a significant leap to project the position that "[horizontal ellipsis]her life would be better if her child were to die" and use this as the rationale for her decision not to resuscitate if the child were to encounter problems during the procedure. This may not, however, be the case at all and is only one of a myriad of potential belief sets that may be impacting the mother's decisions.
Such a position also fails to take into account the religious and moral position of the mother, who may truly feel that she is leaving it in the hands of a higher authority and those decisions should not be tampered with. If the decision were made by an adult in control of his or her faculties, it likely would be easier for the healthcare providers to accept. The fact that a child who is developmentally disabled is involved further complicates the matter.
It is also very possible that friction has already occurred between the mother and caregivers, as the mother is not simply making the decision and then retiring into the waiting room, but she has made some requests that vary significantly from standard hospital policies. The demand that she be allowed to be present during the procedure would likely be declined without further discussion if the child were functioning within normal ranges of abilities. The fact that those who are in charge of the facility are willing to consider making allowances due to the special circumstances of the situation is a testimony to their willingness to accommodate the family's special needs and the potential impact that a bit of flexibility could have on future outcomes.
The request for an ethics consult further reflects an understanding that the situation has a significant amount of gray area involved, and there are a number of options to consider. This provides an opportunity for all parties, including the patient's family, to hear the various positions and options and allow those who feel the need to advocate for a particular point of view to express their opinions as well. The ethics consult serves a further purpose of helping to remind the healthcare providers, who may have a significant amount of time invested in caring for a patient, that they are not the ultimate decision makers but are instead the information suppliers. Once the patient or family members have all of the pertinent information, it is then up to them to make the ultimate decision. Ethics consults may also help remind the healthcare providers that they may be seeing only one small perspective of an overall situation that changes significantly when all the facts are in. They serve to remind that there may be more to the situation than simply dealing with the immediate condition.
The results in this case reflect the value of an ethics consult as a problem-solving tool in a facility. Parties were able to state their positions and the reasons for them, common ground was established, and compromises were created. The net result was one that all parties could have supported had complications resulted in the death of the child.
Input? Feedback? Comments? We welcome your thoughts regarding this article or situations you have actually encountered that might make appropriate topics of discussion or other suggestions to improve this column.
Section Description
Conversations in Ethics is an open forum hosted monthly by Catawba Valley Medical Center in Hickory, North Carolina. A box lunch is provided free of charge to participants who meet to discuss a specific case that is distributed in advance. The program lasts from noon to 1:00 pm and is also open to the public. The purpose is to discuss ethical situations which confront healthcare providers and evaluate possible options and considerations available. The goal is not to provide a resolution to the situation, but rather to evaluate options available and gain perspective on common situations from various points of view. Please note that the situations presented here are fictional, although they are composites of various situations that have been encountered by the authors or other individuals providing background information or suggestions.