Informed Refusal
Background
Informed refusal in its most basic form is defined as the “patient’s decision to decline recommended treatment after all options, risks, and benefits have been thoroughly explained” (“informed refusal”). At its surface, an “informed refusal” from an individual appears like nothing more than a simple yes or no question, however, this issue delves far deeper into the doctor-patient relationship as the “Recognition of the patient’s fundamental rights of personal autonomy and bodily self-determination” must be respected and understood and “… gives patients the right to demand and receive such information, and health-care providers accordingly have an ethical and legal duty to provide it” (Ridley 209). As a consequence, the complexities in ensuring the proper care is given and respecting a patient’s wishes have led this is idea to become the divisive political issue it is today (Ridley 209).
Essentially, to make what would legally be considered an informed decision there must be: voluntariness (the patient is free from “coercion or unfair persuasions), a provision of information (risks, benefits, alternatives, and consequence of no treatment), competency (the patient should be of a sound mind), and understanding (the ability of the patient to comprehend and make a reasoned decision)(Meisel et al). Unfortunately, this scenario is never as straight forward as it is in principle and as result has been at the center of controversy in health care politics. Further, complications arising from the surplus of medical information available through the Internet to the average citizen and advertising have enhanced the capacity for an individual to make one’s own medical decisions without professional consultation (Schwartz). These recent developments have also called into question patients’ relationship with medical professionals, a relationship that has been tested and evolved throughout history.
Historical Context
To understand the history of informed refusal and its effects in medicine, one must consider it in context and relation to the history of informed consent. Starting with the decision and statement from “Schloendorff v. Society of New York Hospital” 1914 (https://biotech.law.lsu.edu/cases/consent/schoendorff.htm), this case laid out the basis for what clear consent required (and by extension the information needed for refusal). Briefly, Mary Schoendorff had tumor that her doctors recommended be surgically removed, a recommendation which she repeatedly denied. However, she did to agree to be anesthetized for an examination of her stomach condition caused by the tumor. While the doctors conducted this examination, they forewent her judgment and decided to go ahead and remove the tumor for her. As a result of the surgery, Ms. Schoendorff developed gangrene which resulted in her losing parts of her left arm prompting a lawsuit (Basic right to consent to medical care). This yielded the basis of what is considered the standard for modern day consent: “Every human being of adult years in sound mind has a right to determine what shall be done with his own body” (Schloendorff v. Society of New York Hospital 1914). This example shows refusal by made the patient and subsequently being overruled by doctors who assumed they could provide her the best possible outcome.
Later cases delve further and more specifically into one’s right to informed refusal and begin focusing more on patients being provided with all the information necessary to give informed consent or make an informed in refusal. Cobbs v. Grant 1972 http://scocal.stanford.edu/opinion/cobbs-v-grant-30236 brought the question, “Had the patient, judged as a reasonable and prudent person, been provided adequate information about the procedure and its risks prior to consenting to the procedure, or if some material risk had been presented, would the patient have refused to proceed with surgery?” (Murray 106). This was in response to the lack of disclosure of all the information to Cobbs (the plaintiff) regarding a procedure that was known in some cases to cause damage to the spleen. Cobbs underwent the procedure without knowledge of this potential complication and a result later filed suit against his surgeon (Cobbs v. Grant 1972). This case called out medical professionals demanding that they provide all pertinent medical information to their patients so that they understand the risks of consenting and not consenting to treatment.
Cases like these while controversial in there own right played into bigger controversies regarding informed consent such as the infamous Tuskegee Syphilis Study (1932-1972) https://www.cdc.gov/tuskegee/timeline.htm. Here, a serious breach of the researcher and participant agreement occurred as even after there was an established cure for syphilis in 1947 (penicillin), the researchers continued to perpetuate the study to see the long term effects of syphilis on human beings. “There was no evidence that researchers had informed them of the study or its real purpose. In fact, the men had been misled and had not been given all the facts required to provide informed consent” (U.S. Public Health Service Syphilis Study at Tuskegee). These cases strained the relationship between medical professionals and citizens and helped feed into informed refusal controversies in the future.
Controversy and Perspectives & Relation to Politics of Health
Given this context, it is important to consider the social dimensions of informed refusal as they were taken into account in Ruha Benjamin’s article “Informed Refusal: Toward a Justice-based Bioethics.” In this article Benjamin describes informed refusal from the perspective of a “biodefector” (those who attempt to resist technoscientific conscription (Benjamin 967). The concept of the “biodefector” is central to how informed refusal is viewed today and plays into the bigger concept of biological citizenship (“the forms of belonging, rights claims, and demands for access to resources and care that are made on a biological basis” (“Biological Citizenship”). These ideas are central components as to why informed refusal is a politics of health concept. Benjamin describes a particular scenario where a religious African American woman was refusing treatment for her child’s asthma. This case highlights the perspective of an elderly, religious African American women and emphasizes the tense relationships doctors can have with this particular demographic. “Speaking of asthma, we’re challenging the test that we’re supposed to be in right now. We’re not taking that stuff [the inhaler]. We’re walking [that is, exercising]. So when we go back in a month, they’re gonna say, ‘‘Oh! It’s the results…Don’t believe everything you hear from man, ‘cause if you do you’ll be in bad shape, ‘cause there’re side effects to everything, there’re side effects to all medication’’ the women commented (Benjamin 972). Benjamin later explains that although the woman does believe there is some validity in the medicine and research provided by physicians, the fact that the physicians don’t “acknowledge the ultimate spiritual source of cures (God)… and see themselves as the source of cures” will sabotage the physician’s ability to be successful (Benjamin 973). While the woman’s logic may be flawed from scientific perspective, “Because health care decisions intrinsically concern one’s subjective sense of well-being, this right of personal autonomy does not turn on the wisdom, i.e., medical rationality, of the individual’s choice. (Thor v Superior Court). This is something that must be respected as a part of “cultural humility”(Benjamin 978) when performing medical treatment or research.
Another critical example that relates directly into the informed refusal debate involves the development of the anti-vaccine movement after Andrew Wakefield’s (now discredited) publication linking the MMR vaccine to autism (Sathyanarayana & Andrade) (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3136032/). Wakefield’s publication spurred the “anti-vaxxer” movement which resulted in parents opting not to have their children get vaccinated. Despite Wakefield’s work being proven false by the medical community, the idea that vaccines have negative side effects remains and has resulted in a significant increase in the rate of measles outbreaks in the US. In 2014, the biggest measles outbreak seen in the last 20 years occurred and 79% of the victims were people who had opted out of the measles vaccine for “personal belief exemptions” (Salzberg).
Interestingly, the demographic of people who opt out of vaccination tend to be wealthier, have college degrees and are privately insured (Levs) which indicates that these people are willfully making decisions based off of their own assumptions about medicine and opting out of medical vaccinations they could receive if they desired. This draws an entirely different perspective than the one provided by Benjamin with the elderly religious African American women as this demographic is tends to be white and educated in households that make more than $75,000 per year (Smith et al 189). A study by Lev’s article from the Department of Public Health showed that only 77% of these parent believed that doctors had their child best interest at heart compared to the 95% who allowed their kids to be vaccinated. This lack of trust amongst the “educated” population of medical officials has caused them to invoke their right to informed refusal and become biodefectors. Overall, this counter example highlights the perspective of another demographic of “biodefectors” and shows how informed refusal can’t be characterized as a simple issue of race or education. This is something that needs to be considered from a holistic perspective where assumptions aren’t made based off demographic information.
Although these examples are not directly linked to a life and death situation, other modern day cases regarding the right to informed refusal have significant consequences that affect much more than the individuals involved. One of the notable cases today surrounds the organ donation program in the United States https://www.organdonor.gov/statistics-stories/statistics.html. In Arthur J. Matas’ et al article “A Proposal for Cadaver Organ Procurement With The Right of Informed Refusal” “a system of routine removal of cadaver organs with an option of informed refusal by the family”(Matas et al 232) is proposed. According to Matas et al, their proposal is a middle ground “for the current ineffective policy and the “presumed consent” policies that achieve effectiveness by transgressing well established ethical and legal principles.” In scientific theory, it does make sense for the population as whole to harvest organs immediately upon the “brain death” of human being as their organs have the potential to significantly prolong the life of the recipient. However, a combination of hesitancy to register from donors themselves and along with the potential conflict with the next of kin’s wishes make it very difficult to get a significant base for organ donors (Matas).
Today, only 54% of adults in the US are registered donors (“Organ Donation Statistics”).
Matas argues that doctors have a responsibility in these cases to present all the facts about the benefits that organ donation offers to society and this is critical to the informed refusal the patients and their relatives make. “We believe that when a patient has already suffered brain death, the physician’s duties to other needy patients become compelling” (Matas et al 234). This calls into question one of the fundamental topics of the politics of health: our responsibility as biological citizens. This perspective from highly educated academics contradicts the idea of autonomy of the individual to make health decisions for themselves which is something that society has been called to respect on a legal basis as seen in the other examples from Benjamin and the anti vaccine movement. Matas et al’s perspective differs greatly from that of the individuals in the previous examples and calls society to forgo our autonomy for the betterment of the population (Matas et al 237). By opting not to take part in the organ donations system, the individual, in the eyes of the medical community is harming others and has less of a hold on their biological citizenship as the individual who does not donate or allow their family member to donate their organs becomes a biological defector. However, the right to informed refusal protects this decision for better or for worse and this decision although controversial, is something we are called to respect by the law.
Overall, biological citizenship and the biodefector are critical concepts relating to the politics of health that are manifested in informed refusal. The complexities surrounding informed refusal will keep it at the forefront of medical ethics debates for the foreseeable future and is something which must be addressed and considered as society works to better itself in the future.
Citations
Basic right to consent to medical care – Schloendorff v. Society of New York Hosp., 105 N.E. 92, 93 (N.Y. 1914), The Law, Science & Public Health Law Sit. Accessed 23 Sept. 2017.
https://biotech.law.lsu.edu/cases/consent/schoendorff.htm
Benjamin, Ruha. “Informed Refusal: Toward a Justice-based Bioethics.”. Science, Technology, & Human Values. Vol. 41, Issue 6, pp. 967 – 990. PDF. 23 June 2016. Accessed 23 Sept. 2017.
“Biological Citizenship.” Biological Citizenship – Anthropology – Oxford Bibliographies. 17 Aug. 2017. Accessed 24 Sept. 2017.
http://www.oxfordbibliographies.com/view/document/obo-9780199766567/obo-9780199766567-0164.xml
“Cobbs v. Grant, 8 Cal.3d 229.” Stanford Law School, Supreme Court of California Resources. Accessed 23 Sept. 2017.
http://scocal.stanford.edu/opinion/cobbs-v-grant-30236
“informed refusal.” Miller-Keane Encyclopedia and Dictionary of Medicine, Nursing, and Allied Health, Seventh Edition. 2003. Saunders, an imprint of Elsevier, Inc. Accessed 23 Sept. 2017.
http://medical-dictionary.thefreedictionary.com/informed+refusal
Levs, Josh. “The unvaccinated, by the numbers.” CNN, Cable News Network, 4 Feb. 2015 Accessed 24 Sept. 2017. ,
www.cnn.com/2015/02/03/health/the-unvaccinated/index.html.
Matas, Arthur J., et al. ”A Proposal For Cadaver Organ Procurement: Routine Removal With Right Of Informed Refusal.” Journal of Health Politics, Policy and Law Vol. 10, No. 2: 231-244. 1985. PDF.
http://jhppl.dukejournals.org/content/10/2/231.short
Meisel, Alan. “Toward a model of the legal doctrine of informed consent.” American Journal of Psychiatry, Vol. 134, No. 3, 285-289. 1977. PDF.
http://ajp.psychiatryonline.org/doi/pdf/10.1176/ajp.134.3.285
Murray, Peter M. “The History of Informed Consent.” The Iowa Orthopaedic Journal 10 (1990): 104–109. PDF.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2328798/pdf/iowaorthj00024-0107.pdf
Pedroncelli, Richard. “Why Jerry Brown Was Right to Sign the California Vaccine Bill.” Time, Time,. 15 June 2015. Accessed 24 Sept. 2017.
http://time.com/3939750/jerry-brown-vaccines-california/
“Organ Donation in India.” Best Hospitals, Doctors in India|MedGurus.Org. 1 Sept. 2017. Accessed 24 Sept. 2017.
www.medgurus.org/organ-donation-donate-to-save-lives/
“Organ Donation Statistics.” Organ Donation Statistics: Why be an Organ Donor?, HRSA. Accessed 24 Sept. 2017.
www.organdonor.gov/statistics-stories/statistics.html
Rao, T. S. Sathyanarayana, and Chittaranjan Andrade. “The MMR Vaccine and Autism: Sensation, Refutation, Retraction, and Fraud.” Indian Journal of Psychiatry 53.2 (2011): 95–96. PMC. Web. 24 Sept. 2017.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3136032/
Ridley, Donald T. “Informed Consent, Informed Refusal, Informed Choice – What Is It That Makes a Patient’s Medical Treatment Decisions Informed.” Medicine and Law 20.2 (2001): 205-214.
“Thor v. Superior Court (Andrews), 5 Cal.4th 725 21 Cal.Rptr.2d 357; 855 P.2d 375.” Stanford Law School, Supreme Court of California. Resources. Accessed 14 Oct. 2017.
http://scocal.stanford.edu/opinion/thor-v-superior-court-andrews-31493
Salzberg, Steven. “Anti-Vaccine Movement Causes Worst Measles Epidemic In 20 Years.” Forbes Magazine. 2 Feb. 2015. Accessed 23 Sept. 2017.
Schwartz et al., “Family Medicine Patients’ Use of the Internet for Health Information: A MetroNet Study.” Journal of the American Board of Family Medicine. Vol. 19 No.1. 39-45. 2006. PDF.
http://www.jabfm.org/content/19/1/39.full.pdf+html
Smith, Philip J., et al “Children Who Have Received No Vaccines: Who Are They and Where Do They Live?” Official Journal of the American Academy of Pediatrics. Vol. 114, No. 4, 187-195. 2004. PDF.
U.S. Public Health Service Syphilis Study at Tuskegee. Centers for Disease Control and Prevention, 30 Aug. 201.7 Accessed 23 Sept. 2017.
https://www.cdc.gov/tuskegee/timeline.htm
Original Author: Chris Vela
Edited by: Chris Vela
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