When 13-year-old Jahi McMath awoke in the recovery room after surgery to remove her tonsils, adenoids and uvula in December, her family members were relieved. But 30 minutes later Jahi started bleeding from her nose and mouth, according to news reports. She continued bleeding for the next few hours and then went into cardiac arrest. Three days later, she was declared brain dead by her doctors. News headlines detailed the ensuing legal battle between Childrens Hospital Oakland in California and Jahis family, who did not want her to be removed from life support.
For nurse ethicists such as Carol Taylor, RN, PhD, MSN, a professor of medicine and nursing at Georgetown University in Washington, D.C., Jahis story compelled her to ask difficult questions about the controversial situations implications questions she also posed to nursing students in her classes.
I wonder if better communication with the family could have improved the situation, said Taylor, who also is a senior research scholar at the Kennedy Institute of Ethics at Georgetown. When something like this happens, I see it as a call to all of us to learn how we can facilitate better communication and build trusting relationships to prevent this from happening again.
Nurses as translators
As the caregivers who typically spend the most time with families and patients, nurses play a vital role in communicating the complex issues surrounding brain death, said Claire Dejou, RN, CNRN, clinical manager of the neurosciences ICU at Medstar Georgetown University Hospital.
People dont understand what brain death is because it is not intuitive, Dejou said. The patients often look fine because the chest is moving with the aid of a ventilator. It is very important to explain to families that weve done all we can to try to save the patient, but we are at a point where there is nothing we can do. To help loved ones understand, I may show them the EEGs flat lines or an angiogram to make it easier for them to grasp that the brain is no longer doing its job.
Also likely to cause confusion for family members are the differences between brain death, coma and a vegetative state, Dejou said. Patients in a coma still have brain function but their eyes are not open. For those in a vegetative state, most of the brain stem has been preserved but other parts of the brain may be compromised. Brain death is the irreversible end of all brain activity.
Once patients have been declared brain dead, nurses and physicians at Georgetown meet with social workers and the pastoral care team to determine whether the family might be open to organ donation if the patient is deemed eligible. Caregivers are careful not to discuss this topic directly with the family earlier in the process due to the potential for a perceived conflict of interest. They instead notify an outside organ procurement team to approach the family, Dejou said.
Clear communication also is critical leading up to the time before brain death, said Clareen Wiencek, RN, PhD, CNP, ACHPN, director of the American Association of Critical-Care Nurses.
There is a temptation for caregivers to make the situation more hopeful because we are all human and cling to hope, she said. If one member of the team says something that is not consistent with other caregivers, the family can cling to that, which can create conflict and break down trust.
Richard Arbour, RN, MSN, CCRN, CNRN, CCNS, FAAN, liver transplant coordinator at Thomas Jefferson University Hospital in Philadelphia, published an article in the December 2013 issue of the journal Critical Care Nurse outlining some clinical findings in patients who are brain dead that could be misinterpreted as signs of brain activity and create a false sense of hope.
Sometimes the cardiac cycle can be so hyperdynamic, moving so much blood with high stroke volumes that it can displace compliant lung tissue, Arbour said. This can create changes in gas pressure and flow between the patient and ventilator. If the changes in gas pressure and flow exceed ventilator trigger sensitivities, the patient can overbreathe the ventilator rate. This can lead clinicians and family members to believe that the patient is attempting to breathe, which is inconsistent with brain death.
To prevent overbreathing, Arbour recommends nurses work with a respiratory therapist to modify ventilator trigger sensitivities.
Another false sign of brain activity can be movements caused by spinal reflexes, such as a leg that moves when a patient is repositioned, Arbour said. It is important to increase awareness [among staff] of clinical findings that can be misconstrued because delays in declaring brain death can add stress for family members and negatively impact organ recovery and transplant outcomes, he said.
One strategy nurses can use to prevent confusion is clear communication during shift reports, Wiencek said.
Nurses need to know what a patients condition has been on the previous shift, she said. If they do [a neurological] assessment and find something different, validate it with the physician or another member of the team rather than saying something to the family right away.
A new protocol for family meetings in the ICU has improved communication between caregivers and family members at University Hospitals Case Medical Center in Cleveland. Three years ago, nurses at the hospital were part of a team that established guidelines for these meetings. For example, the meeting should include as many family members as possible, a designated family spokesperson, an ICU attending physician, a surgeon, the head nurse manager, a nurse practitioner and a social worker.
During the meeting, the participants establish goals for the caregivers and family members that will be pursued until the next family meeting, and a time for that next meeting. Caregivers goals might include re-evaluating the patient in a few days and providing an update on ventilator status, said Bette Idemoto, RN, PhD, ACNS-BC, CCRN, clinical nurse specialist for cardiovascular services at the hospital and a member of the Center for Ethics and Human Rights Advisory Board with the American Nurses Association.
After the patient has been in a unit for a while, not everyone gets the same messages, Idemoto said. The family meetings really help so we can explain why we are doing tests and what we are watching for, and it allows us to clarify if we believe the patients condition is deteriorating and brain death is likely. Family members have an opportunity to provide feedback and, if they express disbelief that their loved one is brain dead, the clinical staff can call in a pastoral care team or social workers to provide support.
She said even with ideal communication strategies, there may be times when disagreements arise between family members and caregivers. In these situations, the best decision may be a call to the hospitals ethics committee. Taylor said an ethics consultant can arrange a meeting involving staff and family members. Consultants are skilled in getting everyone to sit down together to clear up questions and misperceptions that might have resulted from fragmented communication between providers and family members.
Nurses notify physicians that they plan to call the ethics consultant or ethics committee, and ideally this should be done before situations become adversarial, Taylor said. This is acting on our responsibility as patient advocates, and it gives everyone involved a chance to negotiate a resolution that doesnt result in a legal battle.