An article recently came out regarding designer babies on CNN. The FDA is considering a new method that would allow for both a mother, father and healthy woman to create a child if the mother is suffering from a genetic disorder, etc. It is an interesting article! Link Below!
http://www.cnn.com/2014/02/26/health/ivf-mitochondria/index.html?sr=fb022614threeparentbabies9p
To tie into Jackie Glodener’s post about autonomy and children, an extreme case about this topic became reality last week when Belgium granted the right to euthanasia for minors. The Parliament passed the law 86 to 44 with 12 abstentions. Back in 2002, the country legalized euthanasia for those in “constant and unbearable physical or mental suffering that cannot be alleviated” for adults and have since extended the law to include children.
The new bill gives the right only under strict conditions, which seem to fulfill Miller’s four senses of autonomy. A child psychologist or psychiatrist will examine the child’s capability of decision-making, which matches Miller’s idea that the patient is fully competent and aware of his or her decision and addresses previous apprehensions about autonomous decisions in children. The child must receive adequate information from the doctor and his or her parents about death itself. The parents also must give consent for the child’s decision. In addition, the bill protects the doctor’s opinion by stating that no doctor would be forced to carry out the act against his or her will. In all cases the child would have the option of palliative treatment.
While the law’s guidelines seem to adhere to the principle of respect for autonomy, there still seems to be something morally wrong and complex about the issue at hand.
An article about the bill can be found here: http://www.cnn.com/2014/02/13/world/europe/belgium-euthanasia-law-children/
Here is a related article I found, and wanted to share for providing an interesting read. I believe everyone in our class can benefit, as it places more context about a topic we are now all much better familiar with; paternalism, among others.
“While this is a welcome development, it should not obscure the fact that there is still a place for old-fashioned paternalism in medicine — though the decision to defy a patient’s wishes or withhold information is one of the trickiest that we doctors face.”
Changing Relationship
In the past, the physician patient relationship was one of complete trust. Physicians thought they knew everything about medicine, and patients had few other ways of gaining information so they did as they were told. The relationship was deeply rooted in paternalism. However, the influx of medical information readily available in our society as well as a new emphasis on personal care is driving patient empowerment. In addition, the limited time physicians have to spend with their patients have led to less personal relationships and a dramatic decrease in listening to the patient’s concerns and problems. In our time, physicians have little knowledge of their patient’s desires, mentality, and values, which can affect the way they administer treatment. One study even showered that resident doctors spend 12% of their time interacting with patients compared to 40% of their time interacting with the computer. It is difficult to form relationships with patients in this small window of time.
Role of Consent in New Relationship
Robert Veatch argues that consent it a transition concept, an innovation that is only useful as a transition to a more thoroughly revisionary conceptual framework. Veatch argues that with the little information physicians truly know about their patients, their personalities, and their values, there is no way that they can even guess what is in the overall best interest of the patient. Veatch believes that in order for a physician to guess what is the best course for the patient, three assumptions must be true regarding a theory of the good.
In our day and age, Veatch believes it improbable to expect a typical medical professional to be able to fulfill even one of these, let alone all three. In addition to arguing that since a physician has little relationship with the patient, they often cannot accurately determine what is in their best interest, Veatch also argues that physicians are only experts in one component of well-being (medical) and therefore are unable to determine what constitutes the good for another being.
Where Do We Go From Here?
Veatch argues that there are two alternatives to informed consent. The first option being to emphasize the concept of choice rather than consent. Since physicians have no way of knowing what is in the patient’s best interest, they should present the patient with a list of plausible treatment options with the potential benefits and risks of each, allowing the patient full autonomy and choice in their course of action. This seems extremely implausible. A more realistic, but still a stretch, of an option is pairing physicians and patients based on their “deep interests” including religious and political affiliations, philosophical and social inclinations, and other worldviews. This would put both provider and patient on the same page of what values are necessary and essential part of health care decision making and allow physicians to provide the course of action that best falls in line with patient’s views and values.
To me, these two alternatives seem a little farfetched. I think where we need to start is by changing the paternalistic physician-patient relationship to more of a partnership. Physicians need to embrace listening, and think of themselves as more of a health coach then the end all and be all of medical knowledge.
What is the stance on children’s autonomy? How much involvement should a child have in a personal health-related decision? In “The Place of Autonomy in Bioethics,” Childress writes that “the presence, absence or degree of autonomy is a morally relevant characteristic” (Childress 312). This means that if we are deciding on the level of autonomy for a child, leaving them no opportunity for autonomous decision-making could be a possible violation of respect for autonomy.
Chlidress frames it perfectly: “Complexity of respect for personal autonomy.” In children especially, there is a huge grey area for making autonomous decisions with respect to healthcare. In 1995, the American Academy of Pediatrics released recommendations for pediatric decision-making. The AAP divided children into 3 levels of capacity: lacking, developing, and having capacity to make health-related decisions (Ross). The main guidelines regarding children with less capacity for making decisions include “seeking parental permission,” seeking “third-party mediation for parent-child disagreement,” and overruling the child’s decision if it goes against life-saving treatment. This seems fair, assuming that the child is inexperienced in life, unprepared to make an informed decision, and the parent makes a well-informed decision that is in the best interest of the family. For more mature children, the parent becomes a consultant rather than a consenter (Ross).
The major issue with the AAP recommendations is that no guidelines or tests exist to determine the level of decision-making capacity of a child! This means that the physician or pediatrician is the one who decides whether the parent will be a consultant or a primary decision-maker. Of course, if the parent makes a decision that is “abusive or neglectful,” the pediatrician can overturn that decision (Ross). Also, hospitals normally have an ethics committee that handles these kinds of situations, and issues are dealt with on a case-by-case basis.
Another important point to note is that people exist in and through time and their choices and actions occur over time” (Childress 310). A parent may be the primary decision-maker, but the parent must also think about the child’s future- will this child be happy in the future with the decision the parent made? Could this be a violation of autonomy if the child opposed the parent’s decision? What if the child was at an age that the degree of autonomy was sufficient, but the child’s opinion was still ignored? Childress supports this idea by stating “we also have to put that patient’s present consents and dissents in a broad temporal context encompassing both the past and the future” (Childress 310). Veatch argues against allowing the parents full consent, because they may not actually have the child’s best interests in mind- they think about money, parental obligations and their other children, among other things.
We must not abandon personal respect for autonomy, even in the situation that the patient is a child. A final decision should be balanced and thoroughly discussed and understood by all who are involved. Coercion or force should only be used as a last resort (Ross). In “Abandoning informed consent,” Veatch says “it would be extremely difficult to determine whether the absolute best choice has been made” by the parent, but after reading these articles I believe their decision should be considered above the child’s or the physician’s opinion.
References:
Childress, James F. “The place of autonomy in Bioethics.” Arguing About Bioethics. By Stephen Holland. London: Routledge, 2012. 308-316. Print.
Ross, Lainie Friedman. “Health Care Decisionmaking by Children Is It in Their Best Interest?” The Hastings Center Report. 27.6. (1997): 41-46. Blackwell Publishing Ltd. Web. 23 Feb 2014 http://dx.doi.org/10.2307/3527717.
Veatch, Robert M. “Abandoning informed consent.” Arguing About Bioethics. By Stephen Holland. London: Routledge, 2012. 317-328. Print.
http://www.wordle.net/show/wrdl/7588721/Wordle_Children_autonomy created by Jackie Glodener. 24 Feb 2014.
Though the field of medicine during the times of ancient Greeks is very outdated, The Hippocratic Oath is one concept that remains important even to this day. Particularly, there is one line that the general public expects medical professionals to observe: “I will apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice” (Tyson). Interestingly, physicians are expected to judge the best interest of the patient in order to do no “harm or injustice,” but how can one person be expected to determine what is best for another person? Of course, any morally sound clinician wants to ensure that the patient receives the best treatment possible, but to accomplish this they must first combine their professional knowledge with the precise knowledge of every patient’s best interests – a feat that is simply impractical.
According to Veatch, in order to implement a treatment while simultaneously respecting the patient’s best interests, a medical professional must adhere to three principles. First, the clinician must ensure that the patient’s medical needs are met; second, the clinician must ensure that the patient’s other non-medical interests are respected; and third, the clinician must be able to uphold various other societal morals and laws even if these may conflict with the patient’s best interests (Holland 320). As Veatch states, all three of these assertions have the possibility of conflicting with each other. For instance, in a case in which a Jehovah’s Witness has a communicable intestinal disease needs to undergo a critical operation, the surgeon explains that the procedure would require an intestinal bacteria transplant (bacteria from the gut of a healthy individual is transplanted in another individual). He offers an alternative treatment regimen that involves cleansing the gut with potent medications, but this has a very high risk of serious irreversible damage. It is in the patient’s best medical interest to undergo the surgery because the risks are lower, yet this would not be in the patient’s best moral interest. The patient may refuse both treatments and may be willing to live with the disease, although she can spread this disease, which is deadly to other individuals. Thus, the clinician is obligated to treat the patient in order to benefit the greater good, yet this violates the patient’s religious interests and/or her medical and autonomic interests. The clinician and the patient could both agree to the alternative treatment, but this encroaches on the patient’s medical interests. The clinician could leave the patient quarantined for the rest of her life, but this would not be in her best medical and autonomic interests. Subsequently, which option is the best for the patient?
In addition to respecting all three of these factors, medical professionals are guessing to determine the patient’s interests. The most efficient way to diminish the amount of guessing which treatment may work best is for the clinician to strengthen their personal relationship with the patient. Unfortunately, even though the doctor can be “generally warm and caring,” patients may still feel as if there is a distance between them and their physician (Chen). Some people have problems that they would not even tell their best friend, let alone a medical professional who might be a stranger to them. To some patients, medical professionals are experts of their body and know what is best for them with regards to treatment. “Some even said they feared retribution by doctors who could ultimately affect their care and how they did” (Chen). An analogous situation is the classroom setting. Some students often feel afraid to question the authority of the teacher, even if it best serves their learning environment, because the teacher has the ultimate say in their grade. In the medical setting, however, the physician has the ultimate say on the patient’s life.
Essentially, it is nearly impossible for a clinician to act fully within the interests of any individual, especially if they do not know the patient on a personal level. In order for the physician to ensure that most of the patient’s needs and desires are met, the doctor-patient relationship must be strengthened. For this to occur, medical professionals should be more personable to patients in order to make them feel comfortable with divulging information. Meanwhile patients should view their physician as just an average human being with whom they can share their opinions and ideas.
Sources:
Chen, PAULINE W., M.D. “Afraid to Speak Up at the Doctor’s Office.” Editorial. Well. The New York Times, 31 May 2012. Web. 23 Feb. 2014. http://well.blogs.nytimes.com/2012/05/31/afraid-to-speak-up-at-the-doctors-office/?_php=true&_type=blogs&_r=0.
Rosenberg, Jennifer. “Typhoid Mary.” About.com. N.p., n.d. Web. 23 Feb. 2014. http://history1900s.about.com/od/1900s/a/typhoidmary.htm.
Tyson, Peter. “The Hippocratic Oath Today.” NOVA. PBS, 27 Mar. 2001. Web. 21 Feb. 2014. http://www.pbs.org/wgbh/nova/body/hippocratic-oath-today.html.
Veatch, Robert M. “Abandoning Informed Consent.” Arguing About Bioethics. Ed. Stephen Holland. New York: Routledge, 2012. 318-28. Print.
Robert M. Veatch’s article argues that informed consent should be abandoned due to its uses as a “transitional concept” and ambiguity (Veatch 317). Veatch provides several examples to support his argument, among these include the “best interest standard”, how a person defines well-being, and physician bias (322-334). All of Veatch’s examples are accurate; with our current health care system it is difficult for physicians to make recommendations or conduct procedures on patients. Two important supporting facts of Veatch’s argument are that “actual consent is not obtained in all cases” and that the concept of informed consent is a relatively recent occurrence (317-318). Patients may also misinterpret the benefits and risks of a procedure (Krumholz 1190). However, in present day Western society I do not think that we would be able to eliminate informed consent. There are too many legal ramifications that could occur which will only require unnecessary spending. In order to find a median between informed consent and the best interest of the patient I suggest that the physician-patient relationship be adapted.
Many of the information against consent were rooted in the physician-patient relationship. American health care does not place great emphasis on time spent with the patient, which does not allow physicians to get to actually know their patients. Many of the issues Veatch present deal with this lack of relationship. This suggests that improving and strengthening the relationship between the two parties would be beneficial for both.
An article by Dr. Harlan M. Krumholz poses a potential solution to improving the consent process. Dr. Krumholz suggests a patient centered approach. Patient centered care focuses on “providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions” (Krumholz 1190). This means that the physician must have a minimal understanding of who their patient actually is. By acknowledging and working with the patient based on their values, many of the issues that Veatch brings up become irrelevant. To improve patient knowledge about procedures and to improve the process of giving consent Krumholz suggests that patients should receive a “brief standardized and personalized informed consent document” that would cover the risks, benefits, alternatives, experience and cost of the procedure (1190). This document can facilitate discussion between physician and patient, and allow the patient to ask more questions and receive the doctor’s opinion. Consent forms will be standardized, and be at an average reading level and reasonable length (Krumholz 1190). Consent forms will not be written by the institution but by experts from the Department of Health and Human Services. One health system in Kansas City has tried out Krumholz’s solution, which led to “improved reading and satisfaction with the consent process, less patient anxiety, and a sense of partnership in the decision-making process” (1190). Krumholz’s solution agrees with one of the last points of Veatch’s article, “the concept of consent will have to be replaced with…active patient participation” (Veatch 327).
This change to patient-centered care could be added to current health care reform. President Obama’s Patient Protection and Affordable Care Act is attempting to improve health care by reducing the amount spent on health care and providing quality care that is affordable (Health Care Reform Timeline). Including active patient participation into the reform (or as a result of it) can also be beneficial. People may take a greater interest in their health, and could be more proactive in maintaining healthy lifestyles.
Sources
Health Care Reform Timeline. http://obamacarefacts.com/health-care-reform-timeline.php
Krumholz, H.M. “Informed Consent to Promote Patient-Centered Care.” JAMA. 303.12 (2010):1190-1191. Web. 24 Feb 2014.
Veatch, R.M. Arguing about Bioethics. Ed. Stephen Holland. Routledge: New York, NY, 2012. Print.
Applying ethical principles to the medical field has proven complex, as highlighted by James Childress in his writings on the complexities of adhering to respect for personal autonomy.[1] The philosophical discipline of bioethics is not narrowly tied to medicine, but expands to cover medical anthropology, medical sociology, health politics, health economics, research, public health policy, and more.[2] Public health aims at improving the health of the community as a whole, and public health initiatives usually involve preventative measures that prolong life and promote health. Generally, public health policy concerns itself with health based on population-level health analysis. Thus, how do ethical principles change when the policy is focused on net benefit for the community, instead of focusing on individual community members?
Concentration on the group needs and health leads to thinking that often forgets about individual rights, but ethical principles of the individual need to be remembered when applying public health policies. Historically, individual rights are becoming increasingly recognized, and in the medical field, consent is a twentieth-century phenomenon.[3] As medicine increasingly recognizes individual rights, it is a logical extension for public health as a discipline to acknowledge analogous rights.
In bioethics, consent is rooted in the ethical principle of respect for personal autonomy, but this principle is complex and limited in application. Childress in “The Place of Autonomy in Bioethics” presents the scope of applicability of the principle of autonomy in medicine. He argues that first and foremost respect for autonomy of persons differs from people who are not autonomous such as children (unspecified age range) and the insane. Also, respect for autonomy must coincide with other necessary ethical principles such as beneficence and care, and in certain circumstances, ethical principles can outweigh or override one another. Thus, under certain circumstances the principle of respect for personal autonomy may be infringed upon, and specifically, the realm of public health needs to consider if policies made for the benefit of the group reasonably infringe upon the personal autonomy of group members.
This past September, 750 students in Winston-Salem, NC faced suspension after not adhering to state vaccination policies for the Tdap vaccination that protects against tetanus, diphtheria and whooping cough or pertussis.[4] Cases of mandatory vaccinations represent paternalistic interventions where interference with an individual’s liberty may be justified by reasons such as welfare, happiness, values, interests, and needs of the person being coerced. Mandatory vaccination initiatives are public heath measures that override rights of respect for personal autonomy for the sake of containing and preventing infection and disease. In context to this case, paternalism functions off the principle of beneficence. Mandatory vaccinations highlight the conflicts between moral principles, and under these circumstances, I think beneficence overrides each group member’s autonomy. While privacy and confidentiality can still be protected, controlling the spread of disease and preventing illness in community members is a moral call to action for vaccination. While it may be easier to fully respect the autonomy of an individual patient than an entire population, public health policy still should not deprive individuals of their rights without thoughtful consideration. Following Childress’s logic, are all group members considered equally autonomous thus infringement upon personal autonomy is the same? Or, based on group status does infringement on personal autonomy have different implications? In modern times, awareness of personal rights is increasing within bounds; therefore, it is important for public health to grasp and debate these ethical concerns. A new interpretation could view mandatory consent as a prior consent based on group membership, and thus interference is the price of group membership.[5] Such a viewpoint believes that the individual’s interests are still considered, but an individual is accepting his or her role as a group member. Future public health policies could work to understand the line between respect for personal autonomy and social responsibility, and from there, public health can define its realm of action and control.
[1] Childress, J. F. “The Place of Autonomy in Bioethics”
[2] Benatar, D. Bioethics and health and human rights: a critical view. Journal of Medical Ethics. 2006 January; 32(1): 17-20. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2563274/
[3] Veatch, R. M. “Abandoning Informed Consent”
[4] http://www.journalnow.com/news/local/article_b770c0ca-2484-11e3-93a9-001a4bcf6878.html
[5] Hall, Spencer. Should public health respect autonomy? Journal of Medical Ethics. 1992. 18: 197-201.
When discussing biomedical ethics, we frequently favor the right of the patient to decide. This emphasis and respect for autonomy can overrule any number of other considerations. Therefore, I ask the following: Why is (respect of) autonomy important? A typical answer, and likely my own response, would include the importance of the individual’s right to make his/her own decisions. It is an exceedingly important component of any medical decision, and not to be taken lightly. The individual has final say because the body/mind in question is their own.
While reading J. F. Childress’ article “The Place of Autonomy in Bioethics”, I was struck by the potentially confounding factor of socioculturally different views on the importance of autonomy. As a product of American society, I have been raised to believe that the rights and privileges of the individual are paramount. Our culture and, indeed, most of Western thought, is centered on the idea that individuality (and the individual’s conception of that individuality) is to be encouraged. Given the dominance of Western thought in philosophical inquiry, particularly bioethical inquiry, it makes sense that a discussion of bioethics would take into consideration autonomy, the right of the individual to make his/her own decisions.
Free will is another Western presupposition that comes into play when discussing autonomy, the idea that we are the deciders of our own outcomes. Though I do not seek to undermine either of these ideas (free will and the importance of individuality), I think it is important to acknowledge and address the ways in which these ideas shape our dialogue. The reasoning behind the emphasis placed on autonomy is founded in the belief of both free will and individual importance. Should a society, religion, culture, etc. manifest a rejection of either of these principles, autonomy would, in that community, cease to be a worthwhile focus in bioethical conversation.
At the risk of bastardizing, oversimplifying, and/or misrepresenting my argument, I will lay out a general description of what I mean: If we reject the philosophical idea of free will, then our autonomous decisions (whether medical or not) become unimportant – free will is founded in self-determination and without it, predetermination negates the significance of choice. If we reject the sociocultural weight with which we measure individuality, if we cease to believe that the rights of the individual outweigh other considerations, then the value of the individual’s decision is called into question: if the individual is insignificant, why does their opinion and consequent decision matter?
Given that there exist many communities in the world in which one (or both) of these ideas is rejected, I believe reflection on the preconceived significance of free will and individuality under which we discuss autonomy is important to fully understand why our particular society and culture holds autonomy to be important. This type of reflection allows us to transcend our preconceived notions and the potential dangers that arise from not understanding or acknowledging our accepted cultural and philosophical biases.
In short, though I personally believe that a patient’s right to autonomy is exceedingly important, I must acknowledge that a) others- particularly those whose opinions have been shaped by different worldviews – may very well disagree with that opinion, and b) my reasoning behind that opinion is founded in my own sociocultural and philosophical views on free will and the value of the individual.
Word count: 557
Works Cited:
Childress, James F. “The Place of Autonomy in Bioethics.” Arguing About Bioethics. By Stephen Holland. Hoboken: Taylor and Francis, 2013. Loc 8698-897. Kindle.
The Uniform Anatomical Gift Act (UAGA) authorizes the indication, either in a will or on a driver’s license, of a desire to donate one’s organs or body post mortem to act as a legal document. It is crazy to think that any form of legal documentation not be honored and upheld in American society, but apparently it is not uncommon for doctors or even the Organ Procurement Organization (OPO) to allow the family to act against the expressed wishes of the deceased. According to the UAGA, if a person has indicated their preference to be an organ donor, legally, the family has no say in the matter. So, why is such a decision, one made autonomously and ethically accepted as to be respected, so easily overruled at times? D. W. Donovan, a chaplain and vice president for mission and spiritual care at Providence Regional Medical Center in Everett, WA, claims that it is common practice to grant families the ability override previous declarations made by the deceased and offers three reasons for this in his article Defending the Donor’s Decision.
Although a doctor or OPO official have no legal reason to honor or even consider a family’s request to override the wishes of the deceased in regards to donating their organs, Donovan points out that it “can often leave medical personnel caught in the middle of an emotionally charged event” and put them in an awkward position when confronted by an “angry family member who is strenuously opposed to donation” (1). A study conducted in 2001 indicated that only 8% of OPO’s were likely to procure the deceased’s organs if the next of kin objected (1). Respecting a family’s overriding wishes, spares the doctor and the family member’s emotional distress presented by the situation.
Refusing to appease a grieving family member’s desire to keep their deceased love one “whole” or in-tact can have negative repercussions on the health facilities and is another reason that Donovan offers as to why we give in to family member’s requests. Although supporting a person’s decision to be an organ donor is an act of respect for the patient’s autonomy, it can be perceived alternately by the public as an “invasion of privacy and bodily integrity” and can result in poor public perception of that medical facility which is something that doctor’s would obviously want to avoid.
The third reason Donovan offers is that many regard a person’s choice to be an organ donor to not be an authentic autonomous decision. Miller’s article (that we read the other day) listed 4 qualifications for a decision to be regarded as autonomous: free action, authenticity, effective deliberation, and moral reflection. The choice to become an organ donor or not is made by checking a box at the DMV that literally just asks you if you want to be an organ donor. There is no explanation of what that entails, how the process works, how the organs will be procured, etc. Surely Miller would say that this is not a truly autonomous decision. Without any information about risks, benefits or alternatives to consider, how can one actively participate in effective deliberation even if it is a choice free of coercion and true to one’s generous disposition?
Are these common arguments enough to grant a family paternalistic authority over the body of a deceased loved one? I think it’s important to realize that emotions over the loss of a loved one often cause family members to act/think irrationally which certainly should at least prompt discussion of its own to determine whether decisions made in such emotional states can even really be consented to as autonomous.
1. http://www.chausa.org/publications/health-progress/article/march-april-2008/defending-the-donor’s-decision