Front Burner - Who decides if you're dead?

Episode Date: December 18, 2018

"In the vast majority of circumstances, families and care providers in the intensive care unit are on the same page," says Dr. Brian Goldman on Taquisha McKitty's case. The 27-year old woman has been declared brain dead by five doctors, but is breathing with the assistance of a ventilator at the request of her family. Their fight to keep her alive is now before the Ontario Court of Appeal. Dr. Goldman, emergency physician and host of CBC Radio's White Coat Black Art, explains how the case sheds light on the complications of defining death.

Hey there, I'm David Common. If you're like me, there are things you love about living in the GTA and things that drive you absolutely crazy. Every day on This Is Toronto, we connect you to what matters most about life in the GTA, the news you gotta know, and the conversations your friends will be talking about. Whether you listen on a run through your neighbourhood or while sitting in the parking lot that is the 401, check out This Is Toronto, wherever you get your podcasts. This is a CBC Podcast. Hello, I'm Jamie Poisson. On September 14th, 2017, Takesha McKitty's heart stopped.

Paramedics, they got her breathing again, but she couldn't do it on her own. Five doctors have since declared her dead. But right now, more than a year later, Takesha McKitty is still breathing with the help of a ventilator. That's because her family members believe she could still recover. She's still moving to the touch, Takesha McKitty is still breathing with the help of a ventilator. That's because her family members believe she could still recover. She's still moving to the touch. Takesha, can you move for me? They refuse to let doctors take her off life support. They fought for that right and lost at the Ontario Superior Court.

And now they're appealing. This case, it raises some big questions. How do you define death? When is an effort to preserve life futile? And who gets to decide? That's today on FrontBurner. In the vast majority of circumstances, families and care providers in the intensive care unit are on the same page. Care providers are there to help family members as they get used to the idea that their loved one is not going to return to the person that they remember.

That's Brian Goleman. He's an emergency doctor and hosts White Coat Black Art on CBC Radio. Brian is someone who thinks a lot about the patient experience and big ideas in health care, like the complications around defining death. Thanks so much for joining us today. Pleasure to be here. Takesha McKitty's family, they don't want to take her off a ventilator, in part because she's still physically moving.

They say if you touch her, she moves. Yeah. And, you know, putting myself in their place, who would want to make that executive decision without being absolutely sure? So there's a lot of uncertainty when it comes to defining brain death. The only thing I can tell you in this case is that five doctors declared her brain dead. There are experts who have suggested that her movements are odd for someone who is brain dead, these movements are described as reflexes to the surroundings. And those reflexes do not in any way imply cognition, you know, sentience of surroundings or anything like that.

But this is part of the debate. So, Brian, I think the average person thinks of death as something that's black or white. You're either dead or you're not dead. But for doctors like you who actually make that call, it's a lot more complicated than that. And can you walk me through when a doctor would consider someone dead? The answer depends. It's always dependent on the context. If a patient is brought into the emergency department who is obviously dead, who's been down, who had an unwitnessed cardiac arrest hours ago, and they're actually showing signs that the body's been dead for several hours, I just declare the patient dead. And that would be pretty straightforward.

And that's extremely straightforward. And so when does it become trickier? It becomes trickier when a patient is in a state where their heart is pumping. They can be kept going on a ventilator almost indefinitely and we can check their electrolytes and their blood chemistries and we can fix those and fix their sugars, et cetera. So it becomes trickier when they're in that state where their heart is still beating, but we think their brain – they've suffered brain death. Usually, unless it's an egregious brain injury from a motor vehicle accident or a fall from a height where it's obvious, the majority of other people have suffered what's called anoxic brain damage, which means the brain's been deprived of oxygen for many reasons.

And now they're in this state where they're not showing any signs of brain activity, and yet the rest of their body appears is still functioning, enough to keep them alive with the help of a ventilator. And so is there general consensus among doctors when that happens, when a person is actually brain dead? Yes, there is. The first thing that you do, and we're talking about a situation where a consideration is being given to withdrawing life support. And so the process would be to make sure that whatever sedating medications they've been given are withdrawn so that we see what their best level of consciousness is because those drugs like Valium and opiates depress the level of consciousness. That's one thing. You correct their temperature because the lower their temperature, there's a possibility of preserved brain function. You raise their blood pressure and then you assess the brain. And often the first thing that you do is turn off the ventilator and see does the patient breathe on their own.

And you can do other testing as well. You can pour cold water into the ears to see if the eyes move in a certain way. You can gently touch the cornea with a wisp of cotton to see if the patient blinks. What you're looking for is evidence of brainstem functions. You can do an electroencephalograph, an EEG, to see if there's brain activity. If there's a flat line, there's no brain activity, then that would certainly be brain death. And the idea here is that if a patient is unable to breathe on their own, it means that there probably aren't the signals coming from the brain that would tell you to breathe.

Yeah. It's that the, you know, what's the opposite of brain death? Brain alive. And the intensivists and ethicists and neurologists have devised a threshold for determining that a patient is alive, brain alive, that is so low that if they can't meet that threshold, it's unlikely that they have higher functions. There are exceptions. Locked-in syndrome is that where there's specific damage to the brain stem, but the brain above is functioning. So the point is that I think the doctors have developed a very, first of all, that they've developed a very low threshold for deciding that the brain is alive.

And if you haven't passed that threshold, the odds are you don't have a functioning cognition. That doesn't mean that there aren't disagreements. It seems like the medical community has a pretty clear consensus on this. But most provinces and territories in Canada, they don't actually have a legal definition of death. And so why is that? Well, because they haven't developed the definition. They haven't adopted it. They haven't adopted it. I guess that's the reductionistic answer to your question. In the Judeo-Christian religions, Christians, Muslims, Orthodox Jews, for instance, There are exceptional people who do not agree with it. And so there's not a wide consensus, I think, in the public that they would disagree with the notion of brain death being the final arbiter.

For example, to Keisha, McKitty's family is very religious. They're a Christian family, and they do believe that she is still alive. As a religion, it falls into her rights to have her beliefs and our beliefs as a family that they be respected and honoured. You feel her spirit is still within her body. So that's what this is about for us. So we've talked a little bit about religions, how different religions have opinions on what it means to be dead.

How complicated is this from a doctor's perspective to navigate with a patient? So it's complicated. It is complicated to navigate the issue with patients or with family members when they disagree because of some of the things we've talked about. While brain death is accepted by ICU physicians as the dividing line, that view is not shared by everyone, particularly people with certain religious or cultural beliefs. The second reason has to do with brain death itself as a standard. Measuring brain function is not an exact science. I don't think anybody would say that.

Just because a patient has doll's eyes and doesn't breathe on their own when the ventilator shut off does not absolutely prove that there aren't higher brain functions. And there are certainly – I've talked about cases of locked-in syndrome, people who have functioning cognition even though their brain stems aren't functioning. And then there are those pesky reports of people who are declared brain dead and then wake up and some of them resume their lives. That would be the minority. But they wake up and some of them resume their lives, that would be the minority. But they wake up. But I think if you're a family member, you might think that your loved one could be one of these cases. So does it also seem like they may have a point, some of these family members who are hoping? There are. Yes, they do have a point. The answer, I think, you know, I think the experience of critical care, people who work in critical care all the time, is that there are families that go along two extremes.

On the one extreme, they are accepting of the situation and they want to move as quickly as possible beyond it so that they can get used to the new reality that their loved one has died. And on the other end, there are people who cling to the belief for years and they're prepared to be at the bedside for years for whatever reason, either religious reasons or maybe because they feel they have a destiny and they're too young to have died. And if there's any doubt, why not just keep them alive until the doubts can be sorted out? This is a complicated issue to add another layer of complication. There's also been research in recent years about how patients whose brains are non-responsive turn out to be vibrantly alive.

This is research from the Canadian neuroscientist Dr. Adrian Owen. This is 1997, and my colleagues and I decided to put Kate into a brain scanner and to show her pictures of the faces of her friends and family. Her scan showed that her brain actually responded to photos of family faces. Right. And I don't think it's an exaggeration to say that most people thought this was a completely

crazy thing to do at the time. It was a waste of money, a waste of resources. Can we talk a little bit about what you think of this research? Sure. So, you know, I think it's an intriguing area of research that some patients who are deemed to be in a vegetative state and are behaviorally non-responsive. In other words, you talk to them and they don't answer back. Nevertheless, demonstrate something that's now being called covert awareness. So by modulating their brain activity and you can actually see changes in their brain activity, you can see the thinking part of their brain reacting, even though their body doesn't move in the way you would expect them to move in response. You know, the extent to which patients who have been declared brain dead in a so-called vegetative state retain that internal

awareness is unknown. I would say that the research is preliminary. I would say the doctors are watching it, particularly those in critical care, very carefully. But we haven't reached the point where anyone can say with certainty how the brain is functioning in that state. What neuroscientists tell us is that we don't know very much about how the different parts of their brains talk to each other in a dynamic kind of way. If we did know that, then we would have the answers to these very pressing questions. I will say this, that the media has put a lot of attention in Owen's work. Adrian Owen is a science superstar, one of the UK's top 50.

It made news around the world. Medical textbooks, some said, would have to be rewritten. The claim? There was a new way to communicate with patients diagnosed as being in a vegetative state, unable to respond, but actually aware. You know, it's played documentaries and done lots of stories because it fits a certain narrative. Which feels a bit terrifying. It's terrifying.

The idea that you could make a decision to pull the plug on a loved one when that loved one is in fact experiencing the world around them. Yeah. If you look at a study, for instance, that was published last year that looked at the reaction of the public to this kind of research, it certainly raises their misgivings. It makes them wonder, well, is there a way that we can ask the person, do they want to continue in this state or would they rather die? And I think that down the road, if we get those answers, that would provide a lot of clarity. But I don't think we have those answers right now. And even if a patient did indicate they wanted to continue or we hadn't reached the point where we could ask them, but there's a lot of brain activity there, would they be restored to a point at which they could leave the ICU and walk out of the hospital? I would say probably not.

This issue of families disagreeing with doctors about whether a patient is dead or not is something that we have seen in the courts. Is there another case that you can think of that has come up? The case that I'm thinking about is the Hassan Rasooli case in which he was about 60 years old and he was on a ventilator at Sunnybrook Health Sciences Centre in 2010. He developed meningitis and severe brain damage following an operation to remove a brain tumor. And his doctors believed that keeping him on the ventilator was ineffective and no longer in his best interest and that he was likely to die from complications like pressure sores and pneumonia and aspiration.

The family, in a very similar way, argued that Rasooli responded to their presence with movements and tears. He cried. I see from his eye that please help me. I cannot take care of myself. Please, you take care of myself. The case went all the way to the Supreme Court of Canada and the Supreme Court asserted that the ventilator could not be shut off, that life-saving, life support could not be withdrawn without the family's permission. So I think that case performed a useful function in helping give some rules for physicians and rules for families in what was a very acrimonious case. case. The case of Takesha McKitty is a little bit different because the Ontario Superior Court ruled that she was considered legally brain dead. Yes. Can you tell me why we're getting a different ruling in this court? It's up to the court to decide what the issues are. They decided in that case that consent was a bigger issue. And of course, the case of Takeshi McKinney is

now being appealed to a higher court. So we don't know what's going to happen now. And in general, the courts tread lightly on decisions of clinical medicine unless there is an extreme amount of doubt and disagreement within medical circles, within clinical medicine, that they feel that there's a pressing public interest in helping decide one way or another. A lot of the coverage of these cases often focuses on the family, rightfully so, how difficult this must be for them. And, you know, I was reading today some stories about Takeshi Mikiti's father who spends most of his nights in her hospital room. And he now has to see a chiropractor before he even – because he's been sleeping on this reclining chair and, you know, he goes to work the next day. This is obviously incredibly difficult for them.

Yeah. But also for the doctors. Yeah. There is this notion in critical care circles and in general internal medicine as well and in the wider culture of medicine of something called futility. And it's very interesting, just as we're struggling to define death, you and I have been struggling to define death, there is this notion of futility, the point at which further care, often critical care or ventilator care, ventilator support, et cetera, will not make things better for the patient, will not restore them to a decent quality of life.

There is no accepted – widely accepted definition of futility, but it's one of those things where critical care specialists know it when they see it. And to continue to provide on a daily basis life support for somebody who cannot be restored to a quality of life that would be acceptable to them is morally distressing to those care providers, nurses, physicians, respiratory therapists, et cetera. And it's actually called moral distress. Moral distress is having to do something, being forced to do something every day, which your mores, your ethics, your values, your heart tells you is not the right thing to do. In fact, you see it as injurious to the patient in this case or maybe in some cases an indignity to the patient. And especially if you're talking about doing CPR on somebody who they believe to be beyond resuscitation. who they believe to be beyond resuscitation. The point I'm making is that physicians are very careful not to talk about that in the public because they know the public is likely to think in these kinds of acrimonious situations

that the patient's being given a push down the conveyor belt. You know, we need to free up a bed. You're blocking a bed. And we don't want this to be a discussion about money or resources. Exactly. And they are very quick to say this is not a discussion of money and resources. This is an ongoing daily grind of looking after somebody who's not getting better. It is said in the intensive care unit that if you're not getting better, by definition, you're getting worse. You're not supposed to be just kept steady. And it is morally distressing to the people who look after them. And at some point, it's a contributor to burnout. it's a contributor to burnout. So obviously, from everything that we've been talking about today,

this is complicated. Defining death is complicated. And there are a number of acrimonious cases like Takesha McKitty's. So what do you think is the best way forward here? The best way forward right now is to have these cases adjudicated in the court. I don't think this is any kind of decision. It's such a momentous decision that it should ever be imposed by the medical profession or medical culture on patients. I'd like to see a lot more input in the development of the guidelines so that it shouldn't simply be experts deciding it and basically telling patients or family members that if you don't agree, you can sue. I think that the courts are performing a useful function here, for instance, in this particular case, helping define what is the dividing line. Is it brain death? Just as other cases have established that physicians do not have the right to turn off the ventilator once

the patient's on the ventilator without the permission of the family. And we'll continue to use the courts to help us determine the way forward because it's not just clinical, it's legal and it is cultural and it's human. Brian, thank you so much. You're Arguments in the Takesha McKitty case have just been heard at the Ontario Court of Appeal. Bishop Wendell Brereton, a friend of the McKitty family, says that if that court doesn't rule in their favor, his church is determined to have the issue heard by the Supreme Court of Canada. Music have the issue heard by the Supreme Court of Canada. That's it for today. I'm Jamie Poisson. Thanks for listening to FrontBurner.

For more CBC Podcasts, go to cbc.ca slash podcasts. It's 2011 and the Arab Spring is raging. A lesbian activist in Syria starts a blog. She names it Gay Girl in Damascus. Am I crazy? Maybe. As her profile grows, so does the danger. The object of the email was please read this while sitting down. It's like a genie came out of the bottle and you can't put it back. Gay Girl Gone. Available now.