While in the hospital setting healthcare providers are constantly reminded and trained to respect patient autonomy by remaining non-judmental, and avoiding giving direct personal advice. While nurses and doctors are trained to value and respect this autonomy of patients it is also important for nurses to support and encourage the autonomy of the patient. In a hospital setting, many patients are physically and sometimes emotionally dependent on their caregivers, family and friends, however it is important to make sure the patients values, wishes and feelings are first and foremost recognized and respected in order to eliminate reliance on others for anything not pertaining to their specific health issues despite the ease patients may feel in this dependent role. It is important for healthcare providers to provide an environment where patients autonomy and independence can be protected and respected in order to make sure their care meets their own values, reasoning and opinions are met without the interference of others.
I agree with you, Lucy, but I also think it is very important to remember that these issues are not black and white. A certain stance cannot be applied to every patient and every medical case. What if the patient does not have the physical and/or mental capability to make a decision without interference? Where is this line drawn? The idea of interference in a person's decisions through external counsel, which has the potential of influencing his/her thoughts, also raises important questions: At what point is advice considered interference? Where is that line drawn? What if this advice is solicited? Do the beliefs championed by religion, for example, also interfere with the decision-making process? I hate to play devil's advocate and certainly realize that we can ask ourselves millions of questions like these, but I believe that these issues need to be considered.
I just listened to a story on NPR that may be of interest to some of you, especially given our upcoming class debate on Wednesday. NPR is currently running a series called "$1,000 Genome," which focuses on the scientific advances in genetic sequencing. The most recent story in the series ("Will Low Cost Genome Sequencing Open a Pandora's Box?") focuses on the implications of making genetic sequencing more affordable to the masses, and touches on a number of issues that we discussed in class yesterday (Dworkin, 10/1/2012). One of the primary arguments against making genetic sequencing commonplace in the piece is that by giving people more information about their genes, you are not necessarily helping them make better decisions about their health. The tests are not completely accurate and people may make drastic health decisions based on faulty information (i.e. the decision to have a double mastectomy after sequencing for BRCA). The tests may also reveal information that people just don't want to know, or can't really do anything about (i.e. genes that carry a high mutation for severe, unpreventable disease), thus causing a lot of emotional and mental distress without any positive health gain. Finally, these tests may be used by insurance companies to deny coverage or limit life insurance. In my mind, these objections relate fairly directly to Dworkin's claim that more information is not necessarily always a good thing.
You can read the full story here: http://www.npr.org/blogs/health/2012/10/02/161110956/will-low-cost-genome-sequencing-open-pandoras-box
A student sent me this TED talk called "The Paradox of Choice," which relates to Dworkin's argument on more vs. less choice.
Here's the link:
I really enjoyed this talk! It definitely solidified some of the concepts that we have been discussing in class recently. Thanks for sharing! I want to make three comments/observations. 1) Barry Schwartz brings up a valid argument regarding why it may be beneficial for one to give another more choices and, therefore, more freedom. He says that this is often done because it shifts the burden and responsibility of decision-making away from the person providing the choices to the one making the choice. This is true and applicable in the realm of medicine, which is the example that Schwartz uses, but is it truly relevant to other things? I think that this is an intriguing question that is worthwhile to explore because it gets to the core of the freedom argument. Why exactly do we give others more choices and why do we prefer having more choices? 2) I believe that Schwartz takes the question of choice too far when he claims that we have the freedom to reinvent ourselves every day. Of course we are rational, autonomous beings and can choose to be whoever we want, but we cannot simply wake up one morning and decide to be a completely different person. This would only be possible if we were truly the self-suficient, independent beings that Kant describes, but I think at this point we all agree (or should?) that Kant's isolated, in-control agent is a mythical creature. Indeed, the truth of the matter is that we depend on other people. For this reason, I think it would be impossible for someone to recreate him/herself from one day to another. What would this do to that person's relationships with others? I'm not saying that we cannot change ourselves, but that I think it is extreme to claim that we can do so instantaneously -- our inherently social nature prevents this. 3) Finally, I believe that Schwartz does a great job addressing the negative consequences (paralysis, decrease in satisfaction after making choices, increase of expectations, depression/blame, etc.) of having an infinite number of choices. I ultimately agree with his conclusion: some choice is better than no choice, but more choice is not better than some choice. The key is discovering the magical amount, which is highly applicable to the debate we had in class on Wednesday about sex-determination.
I have also been thinking about the paradox of more choice... is it more morally reprehensible to conform when more choices are present? If fewer choices are given, is conformity less reprehensible? Thus, is it more harmful to autonomy when more choices are present? Say for instance Adidas comes out with 100 more choices for shoes, but there are only a few popular styles that everyone wants to wear. Is this worse than if there are only 10 choices with a few popular styles? Arguable autonomy should increase as choices increase, but does it not ironically decrease, or is it harmed by conformation in society---and are people inherently scared of being overwhelmed with complete liberty in decision making?
I too have been wrestling with this subject. I found an article from the New York times that discusses second opinions from many different angles. As an internist this summer at a orthopedic's I met a patient who was required by her insurance company to recive a second opinion in order to have her treatment covered. I questioned rather this was in the the interest of the patient or would rather complicate matters if she recieved different advice. Obviously both doctors are going to advocate that their intervention is best if they differ and if you do not have a strong relationship with one doctor over the other, how does one decide what is best? On the other hand, this may be a wise choice by the insurance company to not only limit costs by unneccesary treatment intervention but also to insure that the patient is getting the best care possible. As discussed in the article, it puts the doctor in an awkward position feeling as though he may be in a battle with other medical professionals to keep the particular patient and keep their trust in their professional opinion. Overall its a very complicated situation and hard to declare which method is right.
Here's the article I found for reference:
I found this article very interesting. Thanks for sharing, Lucy! The issue that struck me most is that concerning patient loyalty to their doctors, especially since we have been talking about physician-patient relationships in class. Can having a relationship with a doctor limit autonomy? My fear here is that patients will forego their right to seek a second opinion solely because they feel obligated to be loyal to the person that has performed their physical year after year. Is it morally permissible for doctors to expect loyalty from their patients? Does expecting loyalty from patients decrease physician integrity? Who, if anyone, is harmed by the dynamics of this situation? Thinking about these issues reminded me of a question I answered in a medical school application: "Your patient has a rare disease and would be a great candidate for an experimental new treatment. You are the principal investigator for the research project and you and your Chair would like to pursue this experiment with the patient. The parents of your patient are adamant against the treatment. How would you handle this situation?" Certainly, circumstances such as this one and the one that arises when a doctor wants to perform a surgery and does not want his or her patient to seek a second opinion give rise to many complex questions. My hope is that doctors will put their biases aside and respect patient autonomy in these situations.
I found an article that appeared in the New York Times about a month ago that brings up many of the issues that we have been recently wrestling with in class. The article talks about a man who is a drug addict and admits it, but is not ready to accept any kind of medical help. His wife, on the other hand, is so scared for his life that she wants him to be treated, even if it requires coercion. The author explains that state laws regarding compulsory treatment for drug addicts differ. While some states do not allow coercion into treatment, others permit involuntary addiction treatment under judge order after family petition, and still others allow doctors themselves to hospitalize addicts against their will. On the other hand, when it comes to mental illness, all state laws allow compulsory treatment when the patient poses a threat to themselves or to others. These examples reminded me of David's final project regarding treatment for anorexic patients. In all of these cases, the obvious question is, "Does involuntary treatment undermine autonomy?" However, this question is much more complex than it seems. First, the harm principle is definitely at play here, for the patient (drug addict, mentally ill, anorexic, etc.) can pose a serious threat to others (and to themselves). Second, giving doctors the ability to hospitalize patients against their will may put doctors at risk, even if they are protected by law, or in uncomfortable situations. For example, a doctor might be pressured to treat a patient by his or her family members but may feel uneasy doing so upon evaluation. This point is also somewhat related to the issues related to physician-patient relationships -- what is the doctor responsible for? Third, allowing family members to petition a judge to order coercive treatment on a patient shifts autonomy from the patient to the family. This issue can be seen as somewhat related to the East vs. West conception of autonomy (individual vs. family unit). Finally, as mentioned in the article, patients often see drug addiction as an autonomous choice (this also applies in the case of anorexia) and sometimes connect their identity to drugs. Here, a soft paternalist may argue that a patient that admits his or her condition, knows the consequences, and is aware of the treatment options should be permitted to refuse treatment. This article is a great concrete example of a situation surrounded by a multitude of extremely complex bioethical issues. Additionally, I think that this article highlights the relatedness of everything we have learned in class this semester.
Article link: http://well.blogs.nytimes.com/2012/10/01/addicted-to-painkillers-but-not-ready-for-help/
Gabi, thanks for sharing the article! I also found it very interesting. It brings up complexities regarding patient competency and also touches upon the role of the both the family and the physician in determining the best therapeutic course for the individual, if any. I was also struck by David's presentation on anorexic individuals or in the case of the article, the alcoholic man, because while these individuals may seem competent in everday functions (i.e. may have jobs or go to school, function as members of society), the mental illness/addiction may be so deeply rooted that it hinders competency in autonomous decision-making in clinical settings. But how do we decide that? and who decides that? I know in many of the state laws mentioned above, a trained psychologist is usually the one to make a diagnostic assessment regarding competency, I just continue to be torn regarding autonomous decision-making, especially when it comes to life or death situations. Is it justifiable to allow a patient to value a drug or mental state over health, or even life? Even if family and physician decides to help the patient (with the deliberative model for example from the Emanuel reading), at what point do you let the patient decide? if ever?
Based on Gabi's article I thought of Beauchamp& Childress' writing on informed consent. Arguable a drug addict has lost autonomy since they have become physiologically dependent upon a foreign substance and cannot perhaps think rationally without it. So at what stage does autonomy end, and a surrogate-decision maker is necessitated? This also applies to GERMS with respect to emotionally distraught patients. GERMS and other EMS services are liable for patients who display suicidal ideations (emotionally disturbed) and our medical director warrants our ability to bring patients to the hospital (through heavy persuasion). We do this by operating under the "rational person" principle, or implied consent- if the patient was rational and not distraught then we assume they would "of course" consent to treatment. However, there is a lot of paternalism at play..
When looked at in this context, I understand more why Eastern regions are so willing to compromise personal autonomy for the family, and the benefits that can come from the family being able to coerce treatment or involuntarily subject an addict or mentally ill family member to treatment. Though it's an infringement on autonomy, I don't see how it can be argued that it's not the best thing to do if it has the potential to bring the individual back to a state of greater autonomy free from the addiction or mental illness. Its interesting that you relate it to GERMS because I never thought of what we do as coercive but when you look at patients who are talked out of refusals when their competence is impaired, or even when its not, then we are definitely acting paternalistically. The only problem, as with all ethical issues it seems, is where to draw the line and how risky it is to legalize and encourage paternalistic actions in some scenarios because of the precedence it could set for other, more controversial scenarios.
I found a fascinating and witty article that was published in The New Old Age blog in the Health section of the New York Times a couple of days ago that indirectly discusses the progression of autonomy levels throughout a person's life. Comparing his eighty-year-old parents with his children, the author talks about the increasing progression of autonomy through childhood and adolescence, the plateau of autonomy in adulthood, and the decreasing progression of autonomy as one reaches an elderly age. Additionally, the author discusses the inverse relationship between autonomy and paternalism -- as children and teenagers gain autonomy, outside paternalism decreases and as the elderly lose autonomy, outside paternalism increases. The author uses the term "semi-independent" which I interpreted as "semi-autonomous" to describe both his children and his elderly parents. However, the difference between these two groups is the direction in which their practice of autonomy is moving, up or down. Indeed, the author contrasts the yearn of children and teenagers for more independence and autonomy with the relinquishing of independence and autonomy by the elderly. Moreover, the author discusses how difficult it is to strike a balance between "independence versus helicoptering" or autonomy versus paternalism when taking care of one's children and one's elderly parents. In both cases, the answer to paternalism is always, "I can do it myself!" although both groups need assistance and paternalistic intervention, since they are semi-independent or semi-autonomous. Definitely an interesting concept to think about!
Article link: http://newoldage.blogs.nytimes.com/2012/11/21/patience-consciousness-and-white-lies/
When I think about the acquisition and loss of autonomy throughout our lifetimes, and the transition periods that can often be difficult, I think about how much more difficult these transitions seem to be in individualistic Western cultures when compared to East. In the West, it is something to pride oneself on when one is self sufficient and self reliant; but in the East this would often be looked down upon as lonely or selfish. In these contrasting atmospheres, it seems as if the elderly in the East don't feel shame that often accompanies needing help with daily activities as much as the elderly in the West. I volunteered at a nursing home almost every day in high school, and it was sad to see how angry a lot of the elderly became when they couldn't reach something or needed someone to open the door. They would simply rather sit in a hallway alone and wait for somebody else to happen to be headed their way before they would ask for help. Here the relational conception of autonomy could be applied in emphasizing that nobody in completely autonomous, and could possibly lessen the negative associations often made by people when they become more reliant on others. This semi-autonomous status seems to be incredibly difficult to deal with, for the elderly especially, because not only are they more limited, they feel shame in admitting to such loss.
I randomly came across a video of a baby hearing his mother's voice for the first time after his cochlear implants were activated. The reactions of both the baby and and his mom are extremely touching. I was surprised to find that there are hundreds of videos on YouTube that document both children and adults hearing for the first time after getting cochlear implants. After our discussion in class on Wednesday, it's worth watching one or two of these videos. The first video I found is only 50 seconds! Here is the link: http://youtu.be/HTzTt1VnHRM
wow, that was really cool. Maybe videos like this can be used to help parents who are on the fence about getting their child the surgery see the benefit to it. The baby looked like he was opened up to a whole new world, and in reality he was. I understand the argument regarding the benefits to being a member of the deaf community; but I can't get past the fact that while they have a different way of living, they are still very limited in our hearing world. Despite creating a vibrant deaf community, some opportunities of the hearing are simply not feasible for the deaf. For example, I'm not sure how a doctor or lawyer could be deaf and still do their job well; unless they chose to work only with other deaf people, but deaf courts and all-deaf hospitals do not exist. I still don't think it's fair for parents to limit their kids by preventing them from having the full range of possibilities for their futures, not just the ones open to the deaf; especially in this video when even in such a young child you can see the joy in his face when he hears for the first time.