Transcription:
Discussion on Dysthanasia

Intro: Welcome to the Peds Ethics Podcast, where we talk to leaders in Pediatric Bioethics about a hot topic or a current controversy. Here's your host, John Lantos from the Children's Mercy Bioethics Center in Kansas City.

John Lantos, MD (Host): Hi everybody. This is John Lantos. Welcome back to the Pediatric Ethics Podcast coming to you from Children's Mercy Hospital in Kansas City, Missouri and the Bioethics Center there. We talk about hot topics and controversies in pediatric bioethics. And perhaps there is no controversy that's perennially hotter than one about how to approach parents about decisions regarding cardiopulmonary resuscitation, CPR, and DNR orders. To address this topic we have with us today, Dr. Jonna Clark. Dr. Clark is an Associate Professor in the division of Pediatric Critical Care Medicine and the Division of Bioethics and the Department of Pediatrics at the University of Washington School of Medicine, and works on the in the Pediatric Intensive Care Unit and the Bioethics Consult Service at Seattle Children's. Thanks so much for joining us, Dr. Clark.

Jonna Clark, MD, MA (Guest): Sure, thank you for inviting me. It's such a great opportunity.

Host: So a few years back, back in 2013, you wrote one of the most interesting and provocative articles about CPR in terminally ill children. You specified that in the title of the article was called the Culture of Dysthanasia, Attempting CPR in Terminally Ill Children. Let me start by asking you to tell us what that word dysthanasia means.

Dr. Clark: Dysthanasia is a word to describe a culture within our medical care system, where we exaggerate the prolongation of agony and suffering and death of our patients. This terminology came out of a conversation I had with one of our critical care fellows at the time of her training. And she had mentioned that in her culture in South America, they often referred to dysthanasia as this prolongation of death and agony and suffering. And I, that term really rung true with me in several of the cases I had witnessed. And therefore it became part of the title of this paper.

Host: So could you tell us about a case that you would characterize as dysthanasia?

Dr. Clark: Some of the most challenging cases that I have witnessed have been where there is a discrepancy between parents in terms of their opinion as to whether or not they would like us to attempt CPR when their child is dying. And this situation can be very hard to witness and can lead to significant distress, all stakeholders involved, the clinicians at the bedside plus the family. And so I would take these cases to be the most profound and most challenging to face. We have had a child with end-stage liver failure whose mother had felt that her child was dying and she felt very strongly that she wanted to make sure her child had a peaceful and calm end to her life. Her partner, the father of the child, however, felt that he needed to fight to the end for his child. He felt that he was worried about trusting the healthcare system. And he also had felt that they had been disadvantaged in the setting of liver transplant listing processes. And in light of that, he felt very strongly that in order to fight to the end, they would ask the clinicians to provide CPR, even when the child was dying.

And this situation was incredibly challenging in that both parents became quite escalated as their child was dying. And I felt that there were things that we potentially could have done better to help both the parents align with what this pathway might look like. And also to help have the last memories of the end of life, of their child being a setting where they were completely distraught and there was a lot of yelling in the room.

Host: Mm, and the paper then talks about some of those things that could be done better. Can you summarize the proposals that you come up within the paper, you and your coauthor, Denise Dosinski.

Dr. Clark: Yeah. So Denise Dosinski and I wrote this paper really where we were wanted to encourage clinicians to take full responsibility, to guide families with complex decision-making at the end of life and specifically surrounding attempting CPR. We felt that rather than asking for consent from families to forego CPR, which on our opinion implies there's potential benefit with attempting CPR that we are, made the argument for using approach that we described as informed assent and other colleagues, Alex Khan has described as informed non descent where clinicians make a recommendation against providing CPR when there is consensus among the medical community, that the underlying disease process is irreversible and that attempting CPR will only prolong the dying process. We feel there are multiple components that need to be present, however, for this approach to be successful. And the first and foremost, which addresses this case that I just mentioned, is that we really need to build a trusting relationship with families. And that starts from very early on in the journey. Once a patient is diagnosed with disease process that potentially is irreversible and potentially fatal.

We need to build trust with that family within the medical community. Without that trusting relationship, the approach that we argue for, will not be successful. We also recommend that we have to have a humble respect for the special attributes of the parent child relationship. I have had parents describe when they are faced with the questions about attempting cardiopulmonary resuscitation in their child, this challenge that they face between their emotional brain and their cognitive brain. Those are words that a parent has actually directly used with me where their emotional brain wants to keep their child alive forever. And yet their cognitive brain is telling them what they see in front of them, that this disease is irreversible and that their child is dying.

And in order to help that parent navigate to these two different, you know, experiences or these two different decision-making processes; we have to have a trusting relationship where this parent can look to us to provide guidance for them. The other component is that we want to make sure that the parent recognizes and help guide them in that not attempting CPR is not equivalent to giving up on their child. I think that I have met families who feel very strongly that in order to navigate the healthcare system, they have to show that they are a very strong parent, that they're a very strong advocate for their child and that this advocacy looks, it appears to be in the form of really fighting for the life of their child.

In one particular experience, a parent actually came to me after rounds, during rounds, her child had end stage pulmonary disease and during rounds, she would talk with the team about I want, I'm hopeful that we can get that tracheostomy placed soon. I'm working on home health nursing ideas. I'm working on, who can help support me in taking my child home. And then she would pull me aside after rounds and say actually, I really want to talk about how am I going to make a decision to proceed with compassionate extubation. I don't want my daughter to suffer anymore. And so this visual perception that the team has of a parent as a strong advocate for their child can be also a very challenging thing that parents face.

And therefore, through this trusting relationship, we really argue that we have to help families understand that not attempting CPR can actually be an act of love for their child, rather than an act of giving up on their child.

Host: So a trusting relationship and understanding that not attempting CPR is not giving up. And if I understand you correctly, in one of the cases in the paper describes something like this, it doesn't necessarily mean that you're also proposing the withholding or the withdrawing of any other life-sustaining treatments. Is that correct?

Dr. Clark: Yeah. That is true. This paper was actually inspired during my training regarding the two cases modified from the actual scenarios. But that we included in this paper, and in both of these cases, I was inspired by these remarkable families who were incredibly strong advocates for their children. And both families were on the spectrum of do everything for our child, even if it means that they may suffer and they may have additional pain, but we really want to do everything to try to save the life of our children. And in both of these cases, the children ended up receiving a lot of aggressive invasive therapies, including ECMO for one of the cases. And yet in the end, when the child was at the active stage of dying, neither family had us attempt cardiopulmonary resuscitation.

Host: So, does that really address the concerns about dysthanasia? About prolonging the dying process in situations where death is inevitable and treatments are associated with suffering?

Dr. Clark: I think in these settings, I agree how you could see that there was still dysthanasia ongoing in these cases where even a child was on ECMO. I think in those situations, however, we are able to provide treatments that will prevent pain and active suffering at the bedside in front of us. I think that when the child actually, their heart is actually stopping, I think that one of the things that we can do is be supportive at the bedside and be present and allow that family to connect in those last moments. I think the challenge that we have in medicine is that with all of our advancing technologies, advancing therapies, that oftentimes there is, there is a lot of uncertainty in outcome. And specifically in the case where the child was placed on ECMO. At that time, the clinicians ourselves, we did not know the severity of the underlying disease process.

And I think that in those settings, when there is great uncertainty or there is still uncertainty in overall prognosis that there, we will have interventions and procedures done that may appear to be prolonging suffering. And yet we are trying to grasp on that small hope that potentially this child will survive and this child will make it. Where I feel that dysthanasia becomes a real problem is when there is greater certainty that the child is actively dying and we continue to provide interventions or continue to offer interventions to families where we see no benefit, but families feel like there may be potential benefit just based on how we have conversations with the families.

Host: So this article was published eight years ago. What's happened since? Have you seen changes either in your personal practice, in your pediatric intensive care unit or around the country?

Dr. Clark: I think there's still an ongoing journey. I wouldn't say that there have been significant changes that I have seen necessarily in the public eye or at least that I can perceive. We have made changes at our own institution. At the time when I wrote this paper, we actually had a 10 to 12 item list that when we had co-discussions with families, we would run through each question with the family, or many providers would run through each question with a family, such as if your child's heart stops, would you like us to give bolus doses of epinephrine? Would you like us to start an epinephrine infusion? Would you like us to perform chest compressions? Would you like us to place them on bi-pap and this list of menu, a menu of items that we would offer families, I think was quite challenging for families to understand the nuances of all of these different interventions and procedures.

And what we did is we changed that approach to really a more superficial approach, almost, I would describe it. Where we only have three options. One, do you want noninvasive respiratory support? Two do you want intubation and invasive respiratory support and number three, would you want to attempt cardiopulmonary resuscitation or cardiovascular resuscitation?

And with each of these, we also make it clear that if you have the third one with cardiovascular, that actually implies the former two, that we will be providing endotracheal intubation, and intubation. And again, we still encourage folks to not present this to families as a list of options to choose from.

We make sure that families understand, we make sure that we first understand the family's values, or we encourage clinicians to understand the values of the families, the goals of the families, the hopes of the families and their role of their interaction with their child. And then we hope that clinicians will use that discussion that they have with the family or that understanding, to help guide families in making decisions about whether or not they would want those interventions and making sure that they align with those values and goals that the family has. In general, also at our institution, our palliative care team has grown significantly.

And even more recently, we have built our EDI committee where we want to make sure that we are providing equitable care. EDI stands for Equity and Diversity and Inclusion within our institution. And so with both of these approaches, in addition to our ethics committee and our ethics consultants, we feel that we are hopefully able to support families into a better to help guide them better using an approach that really aligns with their overall goals and values and, and also does not discriminate against, or have placed more value, judgment based on different cultural beliefs of the value of suffering or what end of life may look like.

Host: So then the incorporation of an EDI lens equity, diversity inclusion is interesting here. Do you find differences among people from different backgrounds in their approach to these decisions?

Dr. Clark: Yes, there are definitely different approaches and different perspectives based on different cultural backgrounds. We definitely see this with our international population. Seattle Children's has a large recruitment type service for immunotherapy at end stage cancer. And so we do have the opportunity and privilege of caring for patients who come from all around the world to receive really advanced therapies to treat what previously was, you know, disease processes that were previously considered to be universally fatal.

And within that context, we definitely see different perspectives and different decision-making regarding therapies near the end of life. In addition, just locally, we see differences in opinion among different cultures. And we also see differences in opinion, among people from different ethnic racial backgrounds.

I feel that a lot of this comes from the, the challenges that the healthcare system has faced in the past. And some of the discrimination that we have and harm that we have done to certain populations specifically are people of color, black and brown people within our communities. And I think that using this approach that we argue for within this paper, we have to be very cautious that we are still recognizing where some of the lack of trust may come from and have a humble respect for that lack of trust.

And in that context, sometimes attempting CPR is the right thing to do for families at the end of life, especially if it is so embedded within our institution and within the viewpoints and perspectives of the patients for whom we are providing care.

Host: So that seems crucial because on the surface, this approach is eminently sensible and ethically justifiable. A child is dying. CPR is unlikely to be effective. You tell that to the parents and if they trust you and understand that it doesn't mean you'll be abandoning them or withholding other things, they would likely agree. And that would have lead to a peaceful death, but what happens if any of those pieces is missing? It sounds like, in spite of your best efforts, sometimes you end up doing CPR, even when you think it's medically inappropriate.

Dr. Clark: That is very true. I have had a handful of cases over the past 10 years where we have definitely attempted CPR on children who we know are at the end of their lives. They are dying in the moments of their death. In those situations, it is typically because some of these important components are not present. And we have been challenged by providing adequate support for these families. To me, these are tragic and very sad cases. And yet in the end, I think that attempting CPR is the right thing to do for these families. And I think that for these families the best that we can do is making sure that we are present, that we are aligning with their goals and their perspectives, and that we have a humble respect for their appropriate mistrust in our system.

Host: So one last question, and then I'll give you the last word, I'm trying to put together sort of the implications of this approach with the implications of the, the three questions that you ask people. In those, it seems you're asking their permission to forego intubation or forgo chest compressions. But this approach that you outlined in the paper seems to be one in which you don't ask, but take the burden of the decision on yourself as a professional and say, we have decided that CPR wouldn't be beneficial here. Is there a conflict between those two approaches? And are you still working on trying to resolve that conflict?

Dr. Clark: I think you are completely correct in recognizing that there's a discrepancy between those two different approaches. And when I mentioned on our form and we only have those three categories, we still recommend, I still personally recommend using an approach where we are guiding families at the end of life. I, we have those three as potential check boxes. However, typically when we have these conversations with families, my own personal approach is to get a better understanding of where the family is at, put that within the context of their underlying disease process, and then make a recommendation of what I would check on that box on those boxes rather than asking, do you want us to do these interventions at the end of life?

I think when we ask the question, would you like us to attempt CPR or to restart your child's heart if it stops, when we frame it with that type of a question, I think we are implying potential benefit for that parent. And I personally feel that most families would not be able to say no in that situation.

However, if we shift our framework or our language that we use, when having conversations with families, how I would reframe that would be your child has a disease process that unfortunately is more powerful than our therapies or our medicines that we can provide. What I am hearing you say is that you are hoping that your child is not suffering. In order to avoid suffering, I would recommend against providing CPR at the end of your child's life, when your child's heart stops, as this will not help your child. I think reframing that conversation in such a way can be very helpful for families and can also recognize that we are providing everything that we can to help their child, rather than doing interventions that may only be potentially harmful for their child.

Host: That is very helpful. We've been speaking with Dr. Jonna Clark, a Pediatric Intensivist at Seattle Children's. The article we're focusing on is called the Culture of Dysthanasia, Attempting CPR in Terminally Ill Children that came out in Pediatrics in March, 2013. Your, your answer to my last question reminded me of another wonderful paper that you wrote with some colleagues that came out in Pediatrics in 2018 called Titrating Clinician Directiveness in Serious Pediatric Illness where you discuss how in different situations doctors should be more directive or less directive. So for our listeners, those two papers, Titrating Clinician Directiveness, and the Culture of Dysthanasia could be very helpful as you think about how to approach parents of terminally ill children and discuss CPR and perhaps other situations about withholding and withdrawing. Do you have any last words, or thoughts you want to leave listeners with?

Dr. Clark: I don't have anything specific. I think that I would like to say that we have, I have a humble respect for our role as a clinician at the bedside and caring for these patients and families. I always teach my residents that it is a privilege and an honor that we are able to serve these families.

And especially when a child is dying, that we are able to be present at the bedside for these families. So ultimately I think that humble respect for our patients and families plays an important role in how we navigate these really complex decisions. For many of these families, they are living their worst nightmare. And overall, I think this is really important that we are there to support families to the best of our abilities and avoid providing interventions that are potentially only harmful for their children.

Host: Really important that, that privilege to be caring for kids and families at that terrible moment. We've been speaking with Dr. Jonna Clark. Who is an Associate Professor in Divisions of Critical Care Medicine and Bioethics at the University of Washington School of Medicine and Seattle Children's. I'm John Lantos. This is the Pediatric Ethics podcast coming to you from Children's Mercy Hospital in Kansas City. Thanks for listening.