Many ethics consults involve conflict over withdrawal of life-sustaining interventions. In some cases, the conflict centers on the criteria used to declare a person dead.
“Ethics committees and clinical ethics consultants are seeing a growing number of conflicts regarding brain death,” reports Thaddeus Mason Pope, JD, PhD, HEC-C, professor at Mitchell Hamline School of Law in Saint Paul, MN.
Most cases go well, but it is important to acknowledge there are going to be cases where disagreements arise. “Those range from fairly minor disagreements to larger-scale, more drawn-out conflicts,” says Christy Simpson, PhD, associate professor in the department of bioethics at Dalhousie University in Halifax, Nova Scotia, Canada.
The family and the healthcare staff sometimes disagree on whether the patient meets a brain-based definition of death or determination of death by neurological criteria. “It may cause the family to question the removal of ventilation or other support,” Simpson says.
Simpson was the lead author of a paper addressing conflicts that arise involving determination of death.1 Simpson and colleagues highlighted some of the conflicts arising at their institutions, and offered guidance to help clinicians think though the different scenarios.
“We wanted to reflect some of what we see going on to help ethicists and clinicians to provide support to everyone involved in these situations,” Simpson says.
The authors reported that conflicts over determination of death may revolve around several issues:
• Consent to perform testing for brain death. Some ethics consults explore the question of whether clinicians may proceed with such testing over the objections of parents or surrogates.
“The overwhelming answer from courts, statutes, regulations, and clinical practice guidelines is that clinicians do not need — and should not seek — family consent to perform testing for brain death,” Pope says.
However, clinicians should notify the family that they will conduct such testing.2
• How to respond when the family disputes the patient is dead. In some cases, the family contends that death by neurological criteria (even if accurately tested) is not death. Exploring the basis for this contention can be helpful to root out misunderstandings on the part of family or clinicians.
“Engaging other supports, such as spiritual care or requesting an ethics consultation, may be useful,” Simpson adds.
• How to determine reasonable accommodations for the family after determination of death. Clinicians sometimes need assistance in setting limits on how long the family should be allowed to gather at the patient’s bedside before life-sustaining interventions are withdrawn, and what interventions (other than mechanical ventilation) must be provided during this accommodation period.
• How to respond when the patient’s religion or values reject brain death as death. Clinicians want to know if such patients should not be determined dead until they meet circulatory criteria for death. “Sometimes, there is evidence that the patient had religious objections to brain death,” Pope says.
Currently, only New Jersey clinicians are legally barred from declaring such patients dead until they satisfy circulatory criteria for death (NJ L.1991, c.90, s.5 26:6A-5). However, clinicians elsewhere might voluntarily delay declaration to permit the family to explore transfer options. “The past three years have seen new guidance for clinicians and ethicists on these matters,” Pope says.
In the United States, the Uniform Law Commission is amending the Uniform Determination of Death Act (UDDA).3 The original UDDA was enacted in almost all states after its publication in 1981. “If approved in July 2024, the revised UDDA will likely change the rules for determination of death in most states,” Pope predicts.
In Canada, new clinical practice guidelines on a brain-based definition of death and criteria for its determination after arrest of circulation or neurologic function were published in 2023.4 “While directed to Canadian clinicians, this guidance will be useful to clinicians and ethicists in the United States and other countries, and will help them prevent conflicts and resolve them once they arise,” Pope offers.
More ethics consults involve requests to continue somatic support after a patient has been declared dead, reports Ann L. Jennerich, MD, MS, ATSF, associate professor of medicine at the University of Washington.
To declare someone dead, U.S. clinicians rely on the criteria set forth in the UDDA. Based on those criteria, an individual who has sustained either irreversible cessation of circulatory and respiratory functions, or irreversible cessation of all functions of the entire brain (including the brain stem), is dead. “However, the application of these criteria is variable across states. This variability opens the door to conflict,” Jennerich says.
Family members should be included in conversations about the possibility of brain death, including the steps clinicians usually go through to establish the diagnosis.
“When possible, they should be allowed to witness the determination process, although it is not required that consent be obtained for the process to proceed,” Jennerich advises.
Clinical terminology can cause confusion. When clinicians talk about “life support,” the family hears that the person is alive. Yet, based on clinical criteria, the person actually may be dead. Clinicians have to explain the equipment’s function, and how they determine the person’s brain cannot function any more.
“We typically think of death as somebody being cold and not breathing. Those particular cues are not necessarily present in the critical care context,” Simpson says.
Clinicians can encourage the family to observe neurological tests that are conducted. Families can see that when mechanical support is removed, the person cannot function without the technology.
Clinicians can start the discussion by expressing they want the family involved in decision-making. Staff may be able to find something on which to agree, and ultimately find a way to move forward. For example, while the family may not agree to withdraw mechanical ventilation, they may agree to DNR status or other nonescalation, Pope offers.
Some families simply need more time to process strong emotional reactions and grief.5 Establishing trust can help resolve these cases. “Particularly in critical care, it is important from the moment that we meet a family to start to build a good therapeutic relationship with them,” Simpson says.
REFERENCES
1. Simpson C, Lee-Ameduri K, Hartwick M, et al. Navigating disagreement and conflict in the context of a brain-based definition of death. Can J Anaesth 2023;70:724-735.
2. Pope TM, Chandler JA, Hartwick M. Consent for determination of death by neurologic criteria in Canada: An analysis of legal and ethical authorities, and consensus-based working group recommendations. Can J Anaesth 2023;70:570-584.
3. Lewis A. The Uniform Determination of Death Act is being revised. Neurocrit Care 2022;36:335-338.
4. Shemie SD, Wilson LC, Hornby L, et al. A brain-based definition of death and criteria for its determination after arrest of circulation or neurologic function in Canada: A 2023 clinical practice guideline. Can J Anaesth 2023;70:483-557.
5. Stewart S, McKitty A, Chidwick P, et al. Trust and conflict in death determination — reflections on the legacy of Taquisha McKitty. Can J Anaesth 2023;70:603-609.
Some families simply need more time to process strong emotional reactions and grief. Establishing trust can help resolve these cases. Particularly in critical care, it is important from the moment that clinicians meet a family to start to build a good therapeutic relationship with them.
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