Linda Dhennin, RN, CNS, APRN
Critical care involves an endless series of crucial conversations; among the most difficult is the brain death confirmation/declaration conversation. However, good teamwork and the application of effective systems for communication can ease the burden on both healthcare professionals and families. In the United States, the incidence of brain death is about 2% (Seifi et al., 2020), which translates into approximately over 500,000 of these devastating conversations each year. Research has shown that these conversations take a toll on critical care providers, and those at the bedside carry a heavy burden of moral conflict and ethical distress when caring for these patients and their families.
Care teams can be described as independent and interdependent. An example of an independent team would be a track and field team, while an example of an interdependent team would be a football/soccer team. A track and field team includes a group of individuals associated with each other but ultimately able to perform independently of each other to attain success. The hurdle racer does not need to comprehend the role of the pole vaulter. However, a Super Bowl or World Cup team has multiple members that must have expert knowledge of not only their role but also of the roles of the other members and may be called on to fill in for other roles in extraordinary circumstances. Critical care teams are like football teams in that the best outcomes emerge from the interdependency of the team and mutual understanding of each other’s roles. Success comes from knowledge of responsibilities of each member and respect for all. Each member needs to feel valued and supported in their role. To see how this can work well, let's consider an exemplary team effort of brain death notification in a non-organ donor patient.
The care team is usually led by the ICU intensivist and neurointensivist, but is also indispensably supported by nursing, respiratory, hospital administration and social support including medical social workers and clergy, as appropriate. After brain-death is clinically confirmed, ideally a huddle with the (neuro)intensivist, neurologist (if not a neurointensivist), bedside nurse and other team members should take place to define a clear and united message to be presented to the family. Team members can ask questions during the huddle to clarify next steps and protocols. This need not take more than 15 minutes and with practice it will require less time. Topics to be addressed should include what is the next step for the patient, what verbiage will be used with the family, and what time frame exists for the remainder of the hospitalization. Keep in mind that medical, nursing and administration policies are not always in functional alignment. This is the time for someone with working knowledge of the three systems to serve as a guide. The unit Clinical Nurse Specialist (CNS) would be beneficial in navigating the team’s concerns while acting as a voice for the patient and family. The most important product of the huddle is to form a cohesive and united message for the family.
The next step is the family meeting. A quiet, private space should be provided to speak with the family to provide support and education. The physician should explain the process and steps to declare brain death. The patient has died and brain death should be explained in layman’s terms to the family. Since the majority of brain death declarations follow sudden injuries, the family has barely had time to process their loved one being injured, let alone having died. Things that may be confusing to the family include: the timeframe required for death declaration; the need for temperature management; cerebral blood flow testing (if indicated); removal of sedation and pain medication; an apnea test. The physician should be prepared to explain the difference between brain death, persistent vegetative state, and coma. This explanation must be unequivocal and certain, and the physician must be prepared to answer the questions that spring from disbelief and denial. Family and nursing need to have the physician present and leading the team. Statements such as “She was alive last night, what happened?”, or “How do you know he won’t wake up if we give him time?” are to be expected and need to be addressed medically before they can be addressed spiritually and culturally. The team must reinforce that brain death is no different from cardiac death, a stance that is supported by the Uniform Declaration of Death Act (Law., 1991). A source of frustration for nurses and confusion for families is the lack of a consistent message, for example, asking the family what they want to do next or asking nursing when the family is going to withdraw care. Assuming the patient is not a donor, the physician should lead the conversation by explaining clearly that there will be no further treatment, no medications, tests, or procedures. A clear timeline for extubation and removal of monitoring equipment should be established and explained to the family. This will allow the nursing staff to move forward with end-of-life support for the family.
Nurses in critical care units should have a fundamental understanding of the end-of-life process in general. The care and support for a family experiencing brain death in a loved one should mirror the care given to families that have experienced a cardiac death. However, unlike in cardiac death, nurses need to be able to differentiate and explain reflex movement from purposeful movement. Patients’ families may also question the cardiac rhythm on the monitor (“If my loved one is dead, why do I still see a heartbeat on the monitor?”), as well as the chest rise and fall generated by mechanical ventilation. It is important to be able to explain to families that the signs of life are present only due to medication and extrinsic support. An amount of time to gather in the room and say farewell should be provided as is culturally appropriate for the family.
It is also important to establish expectations in care to protect the nurse/family relationship. Nurses will often have at least one other ICU patient to care for during this end-of-life experience. However, absences from the bedside after brain death declaration may come across as neglectful or callous to a family grieving the loss of their loved one. Public expressions of grief may occur upon the news of brain death or as other family members arrive. Not being able to attend to these displays and emotional needs is a cause of moral distress in nurses who are also addressing simultaneous needs of critical patients (Yazdi Moghaddam et al., 2018). Nurses at the bedside need to be certain they have the support of other team members, especially nursing leadership, when confronted with this situation. If the unit is especially busy, this is the perfect time for the nurse manager/director or house supervisor to display extraordinary leadership by being present and involved on the unit so that the emotional and physical toll of caring for a patient who has been declared brain dead can be shared.
Critical care team members have an ethical obligation to use intensive care resources wisely. As has been painfully discovered during the pandemic, prolonged stays in the ICU for patients who have died are not an equitable use of resources. It also contributes to a false sense of hope for family; the absence of a clear timeline can lead to a refusal to accept the declaration of death, though this must be balanced with a reasonable amount of time for accommodation. Driven by faith, shock, lack of understanding or previous experience, some families may refuse to allow the discontinuation of active interventions. This is the time for hospital administration to step in. Physicians and nurses should not be placed in circumstances that will be construed as anything but caring advocates for their patients. The amount of time a brain-dead patient may remain in the unit is certainly debated. The period is to be defined by the hospital and is fraught with legal and liability issues. If a family refuses to accept the death pronouncement, California has legislation that states a brain-dead patient may remain in the hospital for a “reasonably brief period” and that the acute care hospital must “continue only previously ordered cardiopulmonary support” (California State Legislature, 2020). That period of time is defined by the hospital and is fraught with legal and liability issues. As part of the aforementioned huddle, this policy should be clear to stakeholders before the family meeting. Intensive care leadership should have 24-hour access to the policy via hospital intranet or policy and procedure manual and unit charge nurses and clinical supervisors should be well-versed in its contents. It is important that any disagreement does not become a technical battle.
Brain death is never an easy conversation. Nevertheless, it is necessary. The End of Life Education Consortium (ELNEC) (American Association of Colleges of Nursing [AACN], n.d.) provides education suitable for physicians, advance practice nurses and bedside nurses. The curriculum covers not only physical care but also emotional and ethical care at the end of life. This course can be presented to critical care teams as a training tool to enhance understanding of this difficult part of critical care - the crucial conversations. As we learned from the American Association of Critical Care Nurses’ Silence Kills (David Maxfield, 2005) study, broken rules, mistakes, lack of support and disrespect, poor teamwork and micromanagement are detrimental and potentially disastrous in the critical care setting. In contrast, some of the keys to strong teamwork are respect, open communication and knowing each other’s roles. A critical care team with “a round table and flat hierarchy” will be best -positioned to conduct a dignified and a satisfactory end-of-life discussion, ultimately fostering respect for the patient, family, and team members.
American Association of Colleges of Nursing. (n.d.). ELNEC. https://www.aacnnursing.org/ELNEC
California State Legislature. (2020). California Code, Health and Safety Code - HSC § 1254.4. State of California.
Maxfield D, Grenny J, McMillan R, Patterson K, Switzler A. (2005.). Silence kills: The seven crucial conversations for healthcare. | psnet. https://psnet.ahrq.gov/issue/silence-kills-seven-crucial-conversations-healthcare
National Conference of Commissioners on Uniform State Law. (1991, August 1). Uniform declaration of death act. https://www.uniformlaws.org/HigherLogic/System/DownloadDocumentFile.ashx?DocumentFileKey=341343fa-1efe-706c-043a-9290fdcfd909&forceDialog=0
Seifi, A., Lacci, J., & Godoy, D. (2020). Incidence of brain death in the United States. Clinical Neurology and Neurosurgery, 195, 105885. https://doi.org/10.1016/j.clineuro.2020.105885
Yazdi Moghaddam, H., Manzari, Z., Heydari, A., & Mohammadi, E. (2018). Explaining nurses' experiences of caring for brain dead patients: A content analysis. Electronic Physician, 10(8), 7205–7216. https://doi.org/10.19082/7205