Hi everyone. I came across this Youtube video today (https://www.youtube.com/watch?v=QWZrHUvhXcw) in my attempt to understand Mill better, and it really helped. It covers the reading "On Liberty", by J.S. Mill in a particularly user-friendly way. It is the same material that we went over in class, but I found it useful just to hear the same material presented in a different manner. Just thought I would pass this on to anyone who might find it useful!
If you have access to HBO Go (you could probably stream online too), there is a really moving documentary about Kevin Pearce called The Crash Reel available right now. He was a favorite for the 2009 winter olympics (snowboarding) and was expected to be a major challenge to Shaun White until he fell on a practice run. The film ties into a lot of the themes we've discussed so far. On the HBO GO version at 1:09:33 there is a "family intervention" scene that has a lot of parallels to the Breaking Bad clip we watched in class. The family wants to steer Kevin away from certain behaviors, but their approach left me with a very different impression from that of their fictional counterparts. (I thought Kevin's family was more justified in their "guilting.") If anyone has the same reaction and has any thoughts about what factors are responsible (trying to prevent an action rather than force one; greater understanding of what it's like to live with a disability; the family's focusing on their own emotions rather than trying to manipulate the patient...), I'd love to hear them! It's also just a really good movie for anyone who's into snowboarding.
Snowboarding/skiing have really been pushing the limits of what a human body can do [<a href="http://www.nytimes.com/2014/01/01/sports/on-slopes-rise-in-helmet-use-but-no-decline-in-brain-injuries.html">Ski Helmet Use Isn’t Reducing Brain Injuries</a>], would the harm principle justify preventing someone from pursuing extreme sports like this?
I also watched The Crash Reel and was very moved by it. As a big fan of Breaking Bad, I too immediately thought of that same scene while watching the documentary. It was an interesting coincidence that Kevin Pearce's brother has Down Syndrome, while Walter Junior has Cerebral Palsy. Being around to support this loved one seemed to be an important leverage point for both Skyler and Kevin's family. Though this was a definite similarity, I thought there were some big differences in the two situations. I truly believe that Kevin's family did not act in their self-interest at all, while I think Skyler did. Nearly all of Skyler’s sentences phrased his decision as they related to her (and the rest of her family), while Kevin’s family pointed out the dangers that competing again would pose to his long-term health. Another big difference I noticed dealt with the decision-maker's state of mind. I believe Walter fully understood the decision he was making while Kevin did not. Anyone who watches Breaking Bad would be quick to note that Walter is by most accounts a genius, and time and time again proves to be the smartest character on the show. In the pillow scene, he gives a complete critique of his family's viewpoint, with a long justification for his decision. In fact, his rationale is so sound that he convinces both Hank and Marie to change their opinions on the spot. Unfortunately, I do not think Kevin had the same understanding of his situation at all. Keeping in mind today’s lecture, I did not think Kevin’s desire is procedurally rational. That is, he fails to consider certain aspects of his current medical condition. He personally wants to compete again, in an extreme sport that continues to get more dangerous. Kevin notes in an interview that when he watches snowboarding now, he cannot believe some of the tricks he won contests with just a few years ago are now considered basic. This means he would be thrusting himself in a dangerous environment he has not been in before. Furthermore, footage of his medical exams reveals he can hardly see at all when not looking directly forward. Being able to see is obviously paramount in a sport that involves aerials, so Kevin seems to be completely ignoring logic in the situation. His bling persistence seems to indicate he wants to compete due to his love for the sport, and reasons he can due to past success alone. It is refreshing at the end of the documentary to see the two sides reach a compromise, and Kevin is allowed back on a snowboard, albeit on very easy terrain and with a large group of spotters.
As far as your question about the harm principle, I do not think it applies to snowboarders and skiers. Though the documentary discussed a number of crashes, none of them involved the athletes hurting other people in the process. Indeed, action sports are very individual in their nature. While it is true snowboarding and skiing are both dangerous, like most things, there is a large potential payoff for this risk. The Sochi Olympics saw US skiers win glory for their country by sweeping the medal stand in Slopestyle, and Shaun White has turned himself into a household name (in a sport with traditionally obscure athletes). That said, I think the harm principle could be applied to the designers of half pipes and terrain parks. The documentary explained that the size of half pipes have grown tremendously in the past few years, which can explain the ability for competitors to do more tricks. At the present moment, people already view freestyle skiing and snowboarding to be some of the most exciting sports around. At the point where the desire for higher ratings are putting athletes at significantly more risk, I believe there should be an intervention to end the steady increase in jump size.
I've never realized this before, but House, the television show, must have been painful for a bioethicist to watch. He basically flaunts all concerns of paternalism and often unduly influences his patients. It does make for good television, though.
http://www.buzzfeed.com/jaimejoyce/kill-me-now-the-troubled-life-and-complicated-death-of-jana I don't usually take BuzzFeed articles very seriously, but I remember coming across this one awhile ago, and it has to do with the concept of assisted suicide. It's an interesting read, (or so I thought), and it directly coincides with our debate topic.
While writing the last paper on when paternalism can be justified, I remembered the devastating case of Dax Cowart. With one of the articles on the case having a title of "Please Let Me Die," one can see how it would be relevant to our class material regarding patient autonomy. The following is a passage from the article that really struck me:
"This is my body, he will tell the doctors, and I have the right to decide whether I want to live or die.
We don't believe you really want to die, the doctors will reply. It's just your pain and depression talking. One day you'll thank us for this. He will plead with his mother and his lawyer to help him get out of the hospital. He will turn to ministers, nurses, family and friends. But no help will come."
Below I provided the full article and a youtube video featuring the case so you can formulate your own opinions.
Hi Erica, thanks for sharing the Dax video. I want to bring up something that his mother said during her interview. Although I'm not sure if she was Dax's proxy in the aftermath of his accident or whether he had a proxy at all, I thought her comments on her son's "responsibility" to live were a little rash. When discussing her thoughts on Dax and his previous desire to die, she said, "I was hoping he was would have time to realize his responsibility to God and come to a realization of what he should be doing." (05:30) Regardless of whether his mom was his proxy, she used the basis of Dax's religious belief as grounds for his decision or "responsibility" to live. I think that Dax should have had the liberty to decide on his desire for himself, whether we was religious at the time.
During last week's lecture when we touched upon how to deal with autonomy when severe religious practices are involved, I immediately thought of "Chicago Fire" (a show I am only moderately addicted to!). During the episode Virgin Skin around minute 16, EMS respondents are helping a man in distress but the man's coworker warns them that he is refusing aid because of his religious views and because he thinks he is meant to follow God's plan. One of the respondents knows that she is not supposed to treat him, but instead lectures him on the consequences that will occur if he does not let them treat him. After a while, he nods his head and they end up saving his life. However, a couple days later, the responder is charged with a legal investigation because the man had sued her for not obeying his religious beliefs. It made me start to question how to go about dealing with situations such as this and what else the responder could have done in this kind of situation.
Super cool question! It sounds like the EMS respondent might be guilty of coercing the individual. When thinking about ethically permissible paternalistic actions, we seem to agree that those actions that maximize the individual's autonomy and are in accordance with the individual's self-identified best interests are ethically permissible. Respect for autonomy does not simply obligate non-interference. Instead, physicians should interfere in order to neutralize impediments patient autonomy. However, what happens when an individual has religious or cultural beliefs that seem to limit their autonomy? What should the physician do then? It must be acknowledged that these beliefs may have been autonomously chosen. If that is the case, it would be morally impermissible for a physician to disregard those values entirely because the patient isn't "acting autonomously." Examples of hard paternalism that impose the physician's beliefs on the patient seem horribly wrong. For example, a physician could not (and definitely should not!) force a Catholic girl to get an abortion if she has an etopic pregnancy. Soft paternalism, on the other hand, seems more permissible. A physician ought to make a patient aware of their options and the consequences of their decision if the patient's values seem to be causing them to make choices that limit their autonomy and would have detrimental effects on the individual's health. In this case, however, it seems that the EMS provider DID impose her beliefs on her patient even though she was simply informing him. When does providing information become coercive? I haven't the slightest clue. It seems to be a case-by-case judgement with no obvious rules.
Response Regarding the Lecture: "Why Informed Consent?"
One thing that I'm particularly interested is whether or not individuals with cognitive impairments are able to consent to be participants in non-therapeutic clinical research. According to Beauchamp and Childress, one gives informed consent if one is "competent to act, receives a through disclosure, comprehends the disclosure, acts voluntarily, and consents to the intervention" However, for many individuals with cognitive impairments, true understanding and appreciation of what they are consenting to if they participate in a research study is impossible. The legal guardians of these individuals are responsible for determining whether or not they should be enrolled in these clinical trials. Many of these trials are nontherapeutic but may provide insights into their condition that may then be applied to other individuals with similar impairments in the future. Without these studies, it is likely impossible that there will be any advancement in the treatment of these conditions. These individuals do not benefit from their enrollment, they are not capable of consenting to these procedures according to the five-element definition of consent, and their enrollment only has the potential to benefit other individuals. With these factors in mind, is it permissible to enroll these individuals?
Response to Lecture Notes on Challenges to Informed Consent:
We didn't get to this question in class, but I think it is profoundly interesting: how does one establish informed consent when a patient has an idiosyncratic religious belief and refuses treatment based on religious convictions not shared by the larger religious community? I think the five-element definition of consent (1) competence, 2) disclosure, 3) understanding, 4) voluntariness, and 5) consent) still applies. In the end, it is important that the physician acts in accordance with the individual's self-identified interests and values. I think that these beliefs should be scrutinized just as carefully as beliefs that are held by the wider religious community and it should be clear that the patient has autonomously chosen those beliefs. It may be the case that the individual lacks competence or understanding. In those instances I think it would probably be justifiable to ignore their refusal. Also, I really am a bit too tired to think about this now, but should the standards for informed refusal differ from the standards for informed consent? A patient may very well be incapable of consenting to a life-saving procedure, but it seems rather ok to go ahead and perform the procedure because that is what any rational being would have wanted anyway. It seems strange to think that someone would deny an individual with Alzheimer's necessary heart surgery simply because he was unable to consent to the procedure due to his lack of understanding. If someone refuses care, however, and they are incapable of understanding the implications of their refusal, can someone *force* them to be treated? Is there a discernible ethical difference?
Interesting question about informed refusal. My immediate thought would be to treat informed refusal exactly as you would treat informed consent, however after thinking it over I believe that the two are, in fact, quite different. When a patient consents to a surgery, she agrees to a procedure that will have direct effects on her, for better or worse. However, in an informed refusal scenario, the patient is not changing anything about her current state. By refusing a procedure, she is not going to be affected by it at all. Because of this, I do believe that a rational patient should be allowed to give informed refusal. No one should be able to force her to be treated, because that would be severely limiting her autonomy.
In the US, I think that informed refusal must be much less common than informed consent. I can't think of any procedure that would be performed unless explicit refusal is given, except if a patient is unconscious or incapacitated and needs emergency medical care (ex. her heart has stopped, and unless she has a DNR on her person, she will be saved by medical professionals). In this case, however, it is important to note that the patient is incapacitated, so unless she had explicitly expressed refusal when she was capacitated, the medical professionals would act in her best interest, and save her life.
I suppose what I am trying to say is that, assuming a rational patient, informed refusal, although rarely needed, is just as legitimate as informed consent. No one should treat a rational patient without her permission, and the standards of informed refusal should not differ from informed consent.
Hi everyone, I want to bring up something that was mentioned during Wednesday's lecture. When we were discussing whether Elizabeth Bouvia's wish (to be sedated and starve to death) should be respected, one of you suggested that Bouvia should have the "true desire for death" for PAS to be justified. What if Bouvia's true desire for death was a product of all of the extreme stresses (getting divorced, kicked out of school, having a miscarriage, etc.) going on in her life? Could these reasons not be grounds for a "true desire"?
On another note, I found it interesting that (after the court held her right to have her feeding tube removed) Bouvia ended up choosing to live and is still alive today. Thoughts?
I agree with whoever said that Bouvia should have the true desire for death in order for PAS to be justified. I also believe in the possibility that certain extreme emotional stresses could have been the cause this desire. However, I do not think that these stresses alone are reason for concern. It is perfectly reasonable for Bouvia to have desired to die because of all of the extreme emotional duress she was placed under. However, these reasons alone should not prevent PAS from occurring. PAS should only be stopped if the patient is shown to exhibit emotional irrationality. I believe that emotional duress can serve as a reason for a medical decision, and can coexist with a patient's rationality. The terms are not mutually exclusive. In order for Bouvia to have exhibited emotional irrationality, she must have shown that her reasons (emotional duress, or other) affected her long term goals and were not autonomous in the making. There is the possibility that her divorce, expulsion, and miscarriage were reasons for her wish to die, but did not alter her long-term goals (perhaps which included dying when appropriate/with dignity), and that she was perfectly autonomous and rational in making her decision.
The fact that she ended up choosing to live is very intriguing. Perhaps she realized, upon contemplating death, that she valued life more than she originally thought she did. Regardless of her decision, the fact that she ended up switching it reveals the fact that contemplation and reflection were apparent in its formulation.
Hi Sarah, thanks for your input. You make a great point that longer reflection made impact on this whole situation. It seems that *time* plays a huge part in decision-making for patients. Bouvia saw that despite all of the adversities she faced, she was able to move on from them and regain her desire to live.
I now wonder about Dax Cowart who had a much more drastic experience. His case is much more complicated as he was undergoing extreme physical pain from the get-go of his accident. He said: "I was burned so severely and in so much pain that I did not want to live even in the early moments following the explosion." His desire to live was gone as soon as the accident occurred, and this remained the case for more than a decade following it. I'm sure that after a year of recovery, his emotional rationality was no longer at the intensity of when it was during the week of his accident. After all of the time following the accident, he still had no desire to live. In fact, more than ten years after the accident, he attempted suicide twice. Like Bouvia, Cowart had many years of contemplating but differed from Bouvia in that his desire stayed true to what it was since the beginning. With that said, my question is: After an extensive period of time (years), does a patient have *more* autonomy to decide that he/she wants to die than when he/she first gains emotional rationality (after an accident--let's say, after one year of recovery)?
I was watching Seinfeld the other night and thought of this class when Kramer was discussing his living will/advance directive with Jerry and Elaine. Below is the link for the youtube clips from the show. I recommend watching http://www.youtube.com/watch?v=igZvuCJv4VQ
Thanks for sharing Erica. Though I know that Seinfeld is a sitcom and not all of it is supposed to be taken seriously, I still find it interesting that Kramer is pretty casual when at the table and deciding on whether to be kept alive in the various situations presented to him. Listening to the different and rather complicated situations, I would think any patient would want to think over each carefully and take some time to know more about the components and circumstances of each before making his or her decision. That being said, I wonder how these conversations actually go amongst a patient, his or her proxy/proxies, lawyers, and doctors. Do they require multiple sit-downs? What happens when a patient and his/her proxy disagree on a particular situation? Also, these are a couple of the situations mentioned in this scene:
"One lung, blind, and you're eating through a tube" and
"You can eat, but the machines do everything else" I wonder how often one or both of these situations are presented when creating advance directives today.