New guidance from the Canadian Critical Care Society aims to help clinicians respond to families’ demands for life-sustaining treatment.
• Some families struggle with accepting their loved ones’ deaths based on neurological criteria.
• Clinicians may wrongly believe they are obliged to acquiesce to family demands.
• Provision of non-beneficial care can delay the grieving process.
Any form of life-sustaining treatment should be considered a trial that should continue as long as it is desired by the patient and involves a reasonable prospect of recovery to a meaningful quality of life, according to a new guidance from the Canadian Critical Care Society.1
Two recent Canadian court cases highlight the need for the guidance. Both involved young people who were declared neurologically dead, which was challenged by their families in court.
“It’s a hugely different dynamic from 30 years ago when it was unheard of to go to court. Now it’s happening frequently,” says Alison Fox-Robichaud, BSc, MSc, MD, president of the Canadian Critical Care Society. There are multiple brain death cases working their way through the courts in the United States and United Kingdom, and now in Canada as well.
“It is common for critical care to be misunderstood, and how technological support can delay death,” says Bojan N. Paunovic, MD, FRCPC, one of the position statement’s authors.
Misperceptions regarding brain activity and other functions that are needed for survival are common. “It is often difficult for families to separate what they are seeing to what the doctors are saying, so they struggle with that,” says Paunovic, medical director of the critical care program at Winnipeg Regional Health Authority. The Canadian Critical Care Society recently put out an education tool on this topic.2
Fox-Robichaud says, “We’ve got to show families that when you stop the ventilator, the breathing stops — and that’s what’s keeping things going.”
Acquiescing to Demands
Criteria for death vary across U.S. states and Canadian provinces. Some do not have legislation that refers to neurological death. “The lack of a concise legal definition is one area where we have been struggling,” says Paunovic.
A recent case occurred in Ontario, which has its own provincial statutes regarding consent and capacity. Because of the court’s ruling, some intensivists in Ontario feel they have no option but to offer ongoing inappropriate care, says Fox-Robichaud, but this is a misinterpretation of the court’s ruling. “Some clinicians may interpret this as a need to acquiesce to family demands. But this respect for patient autonomy should be balanced with our duty to educate about death, dying, and the concept of nonbeneficial care,” she says.
By providing nonbeneficial care, clinicians are potentially violating their own ethical beliefs and delaying the grieving process for families.
“We have swung the pendulum of patient autonomy so far to one side that we’ve forgotten about the balancing act in that,” says Paunovic. “We wanted to make a statement of support to clinicians in these situations, that we are behind you.”
Controversy persists as to whether neurological death is equivalent to cardiac death. “What I would like to see is some harmony across the country in trusting the rigor with which critical care physicians make a determination of neurological death,” says Paunovic. “Unfortunately, I don’t think that we are going to get that.”
More likely, says Paunovic, “what is unfortunately going to happen is we are going to end up with a case down the road going all the way to the Supreme Court.”
If the family has made a clear decision that it doesn’t believe in neurological death, then the proposed care plan should not offer interventions that would support the ongoing organ support of that person, according to the guidelines. “That’s where ethicists can come in, to set boundaries that we are not going to offer things that will perpetuate the idea that we are supporting the life of someone,” says Fox-Robichaud, a professor in the division of critical care at McMaster University.
Families may request help in transferring the patient to another facility that will provide the interventions they’re seeking. Ethicists can help the clinical team with moral distress, if it occurs, by acknowledging their ethical dilemma. “They are being asked to do this because the courts have told them to do it, as opposed to it’s the right thing to do,” says Fox-Robichaud.
Ethicists in the hospital setting can use the Canadian Critical Care Society’s statement in these ways:
• As a jumping-off point for conversations on how to handle similar cases in the future.
“The more people involved in the discussion, the better,” says Fox-Robichaud. With ample education on clinicians’ ethical and legal obligations, future conflicts hopefully can be prevented.
Only a small minority of cases involve litigation. “But there are many cases involving this scenario that cause angst for the clinicians and families,” says Fox-Robichaud.
• As a tool to navigate difficult cases.
The guidance can support clinicians in talking with families about limiting the care that is provided. “Sometimes inadvertent communications get taken the wrong way, and now people are feeling entrenched,” says Fox-Robichaud.
Statements such as “the doctors are trying to play God and kill my loved one” are sometimes made by distraught family members. “That can be pretty demoralizing,” says Fox-Robichaud. “The healthcare team feels on more solid footing if they know they’ve followed guidelines of a national society.”
• As a reference to develop hospital policies.
Policies should be framed as doing what’s in the patient’s best interest. “Given the scenario, there are certain things that are reasonable to proceed with, and certain things that aren’t,” says Fox-Robichaud.
Unfortunately, clinicians sometimes begin the discussion by bluntly telling the family what they won’t do. This can result in the family feeling abandoned by the care team. “It’s important not to approach the family that way, even when things are grossly obvious to the clinical team,” says Fox-Robichaud.
1. Bandrauk N, Downar J, Paunovic B. Withholding and withdrawing life-sustaining treatment: The Canadian Critical Care Society position paper. Can J Anaesth 2018; 65(1):105-122.
2. Canadian Critical Care Society. Statement on misperceptions of brain death and organ donation. Oct. 30, 2017. Available at: https://bit.ly/2JunGYS.
• Alison Fox-Robichaud, BSc, MSc, MD, Professor, Department of Medicine, McMaster University, Hamilton, Ontario, Canada. Phone: (905) 521-2100 ext. 40742. Email: email@example.com.
• Bojan N. Paunovic, MD, FRCPC, Medical Director, Winnipeg Regional Health Authority/Assistant Professor, University of Manitoba, Winnipeg. Phone: (204) 787-1634. Email: firstname.lastname@example.org.