It seems like 5-year-old Julianna Snow has made a decision that's making a lot of people very upset. She doesn't want any more treatment for a chronic degenerative neuromuscular disease called Charcot Marie Tooth Disease. So she's decided that if she becomes sicker, and if she develops a pulmonary infection, she doesn't want to go back to the hospital. Instead she wants to die at home.
When her mother Michelle tried to explain their decision on her blog
CNN picked up the story and reproduced parts of the conversation that led to that choice:
Michelle: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?
Julianna: (nods)
Michelle: And it probably means that you will go to heaven by yourself, and Mommy will join you later.
Julianna: But I won't be alone.
Michelle: That's right. You will not be alone.
I haven't experienced the intense negative reaction that many people seem to have had to this story. Maybe that's because I'm a palliative care physician and I take care of many patients who choose to forgo aggressive treatment in order to avoid further suffering and spend more time with their families. So the fact that Julianna is making this decision with her parents isn't necessarily concerning to me.
Nor is it surprising. In fact, most of my patients tell me some version of what Julianna is telling her parents. True, what they say usually isn't couched in religious terms of going to heaven. But the message is the same. They tell me quite clearly that they don't want any more aggressive treatments, and that those treatments make them uncomfortable. And they also say that the suffering that those treatments cause just isn't worth it for them anymore.
So I think it's safe to say that most adult patients who would say what Julianna told her parents would find that their preferences are honored and respected. Every day I see patients who have decided to make the same decision that Julianna has made. And they make those decisions without any headlines from CNN or other news outlets.
But Julianna isn't an adult. She's only 5 years old, and the presumption is that a 5-year-old probably can't understand enough to make such a weighty decision. That is, we assume that she doesn't have adequate decision-making capacity to decide that she's ready to die.
What does that mean?
In general, when physicians assess decision-making capacity we look for four things. First someone needs to be able to make a choice. That's usually easiest, and most people can say what they want, whether they understand it or not.
Second, people need to be able to understand the information that they're given as they're making that choice. That's a little bit harder, and can be more difficult to assess. What facts are important? How much understanding is enough?
Third, people need to be able to appreciate that the information they're given about their health applies to them. And fourth, they need to be able to weigh the risks and benefits of a decision.
That's a pretty high bar, and many of my patients with serious illnesses and delirium or dementia aren't able to meet those standards. But what's most striking to me in reading through the transcripts of Julianna's conversations with her family is that she seems to be able to do most are all of these things quite well. For instance, she understands at least at some level that without more treatment she's going to die. And she recognizes that this means she won't be with her family anymore. And she can also say that refusing further treatment is better for her from the suffering she's had to endure with very uncomfortable naso-tracheal suctioning. And of course she can express a choice, very clearly.
Don't get me wrong -- I'm not saying that based on a transcript from a website I can determine the Julianna has adequate decision-making capacity to make this choice. Only her physicians and her parents can make that call. But I can say with a pretty high degree of confidence that the evidence of decision-making capacity I've seen in those transcripts is on par with what I hear from many of my patients who make these decisions.
I don't have all the facts, and I've never met Julianna or her parents. But it seems to me as though they, and her physicians, are making the best choice they can in a horribly difficult situation. They're asking the questions that they should be asking, and they're worrying about the things that they should be worrying about. And -- most important -- they're supporting Julianna in making her own choices.
Perhaps the most vivid aspect of Julianna's story is not that this is a 5-year-old who wants to go to heaven. No, what really struck me as most impressive about her story -- and most unique -- is that she has a team of physicians and family members who are helping her to make the right decision. They're talking about what's important to her, and supporting her in making an impossible choice. And I wish more of my patients had that kind of attention and support.