The Limits of Patient Autonomy in Regards to Religious Values
As future medical providers, we are taught that respect for patient autonomy is one of the four pillars of medical ethics. It is our due diligence to no longer tell a patient what to do but rather via shared decision making, educate the patient on what their medical options are, what we would recommend based on our expertise and together, determine what the next course of action may be. This idea of shared decision making also considers that the patient is of sound mind, understands inherent risks and benefits of their decision. With this in mind, it is often to many providers’ dismay when a patient may forgo simple or lifesaving procedures as it conflicts with their religious beliefs. When religious beliefs trump medical duties of a provider to perform beneficence and non-maleficence, it often leaves us with the dilemma of who is right.
Patient autonomy dictates that patients have the right to make decisions about their care without health care providers trying to influence the decision (AMA, Journal of Ethics, 2016). In the case of Stamford Hospital v. Vega, a patient who happened to be a Jehovah’s witness, began profusely bleeding after delivering a healthy baby and was given blood transfusions by the doctors there to save her life. After she recovered, she cited that the doctors knew of her religious beliefs and that she did not want to be saved. The attending physician and those in the room at the time firmly believed that it was essential that she receive blood transfusions for survival, claiming that “the baby would have been abandoned had the defendant died and that the defendant’s life would be saved by the transfusions” (236 Conn. 646 (1996)). The Supreme Court ultimately sided with the defendant stating that the hospital “violated her common law right of bodily self-determination; the hospital’s interest in protecting its patients did not extend to the defendant’s baby, whose health was not in danger, and, as compelling as the hospital’s interest in preserving life and upholding the ethical integrity of the medical profession might be, those interests were not sufficient to take priority over the defendant’s common law right to bodily integrity as long as she was sufficiently informed of the consequences of her decision, was competent to make such a decision, and freely choose to refuse the blood transfusion” (236 Conn. 646 (1996)).
The knowledge of blood transfusions alternatives has increased with the advancement of medicine. Refusing blood transfusions is now becoming more common even outside of the JW group thus making this issue paramount. In learning about blood transfusion alternatives, the healthcare system can avoid cases such as these. To ensure or limit the conflict between the pillars of medical ethics there are many different options that the clinician could have chosen instead of a blood transfusion. Jehovah Witnesses (JW) accept options such as Iron, Transexamic acid, cell savage, Recombinant Erythropoietin, acute normovolemic hemodilution, thrombopoietin agonists, interventional radiology, and Recombinant factor 7a. Also, having already known about the patient’s advance directive, the doctors should have been prepared for if the patient did exsanguinate such as performing a bloodless surgery by using diathermy scalpels, making incisions with local vasoconstrictors and applications of topical hemostatics such as fibrin glue or thrombin gel. Jehovah Witnesses have their own Hospital Liaison Committee that can discuss with doctors the possibility of complications and blood transfusion alternatives.
There was a 7-year case study performed from 2010 to 2017 in the US medical center where a comprehensive patient blood management (PBM) program was implemented. In the program it was found that even with substantial reduction in using transfusions the length of the patient’s stay, in hospital adverse events incidents were lower and there were improved clinical outcomes. In knowing about these different alternatives, the conflict between religious beliefs and medical treatments/decisions can be minimized or even completely erased.
Another area where medical ideals and religious beliefs have clashed is in the way parents handle illness among their children. Religions vary in the value they place in medical treatments versus faith healing. While many religious parents use both scientific and spiritual methods in treating their children, some resort to seeing a medical professional only as a last resort or in dire emergencies, and some are reluctant to take their child to a doctor at all. As medical professionals, when, if ever, are we allowed to treat children without parental consent? Does overriding patients’ wishes in regard to their preferred course of treatment for their children violate their religious freedoms? If harm or death befalls a minor due to parental refusal to seek medical treatment – are the parents liable in the eyes of our justice system? These questions are difficult to answer, and different States vary in their approach.
More than half of States in the U.S. have laws that protect parents who decide to use prayer to treat their children in place of modern medicine. However, even among those States, there are some with provisions in place where medical treatment can be forced, especially when a child faces death or serious harm. This process, where a judge may compel treatment, is referred to as “judicial bypass” (Child Welfare Information Gateway). In Law and Medicine: Pediatric Faith Healing, an article from the AMA Journal of Ethics, four legal cases of medical neglect in states with different legal provisions are summarized. In one case, which occurred in a State with no religious exceptions, the parents of a 10 year old who died from juvenile diabetes because he was treated with faith healing alone were found guilty when they withheld medical treatment. Even though the parents defended themselves with the argument that it was unconstitutional for the State to not have laws protecting religious freedom, the court ruled that their duty to protect children from death and serious harm superseded this. However, in another State, one with provisions for religious exemption, a child suffering from grand mal seizures did not seek care, and instead relied on prayer alone. The courts ruled in favor of the parent’s right to do so, even after the child suffered “severe physical impairment” after a status epilepticus episode triggered a stroke. The court’s reasoning was that religious beliefs should only be overruled if a child’s life is in imminent danger (Abbott, 2009).
There are other religions we should be aware of that tend to place religious beliefs over “typical” medical practice. Within the past few years, there have been many outbreaks of vaccine preventable diseases within the US school system which has been tied to those who decline vaccinations due to religious exemptions. One example of a religion that abides by this practice can be seen in those who abide by the Christian Science faith. According to the beliefs of this religion viruses and bacteria do not cause disease and that their followers should trust God instead of vaccinations to prevent disease. Mary Baker Eddy, the founder of Christian Science, claimed that parents cannot shield children from disease through metaphysical means such as vaccination and medicine because God is the only cause for everything. The Amish is another religious group that follows the practice of “no immunizations” citing that “the Lord will provide and does not give them more that they can handle”. Not only do they resign to God’s will, but they also believe in the idea that they must accept whatever comes their way even if it is a disease. According to an article published by NIH since 1990 there have been three large outbreaks of measles that stemmed from the populations who rejected vaccines due to religious reasons (Swan, 2020). The author goes on to expand by stating there was an outbreak in 2014 within the Amish community that led to a total of 383 reported cases. Before this, in 1994 there was an outbreak that began within the Christian Science population and eventually spread to seven states, schools and colleges for Christian Scientists, and throughout St. Louis public schools. The third and one of the nation’s most severe outbreaks was in 1990, again was the result of a religious group who refused vaccinations, this refusal ultimately led to the infection of over 1,400 people and the untimely death of nine children.
We need to apply the outcomes of the ethical dilemmas previously mentioned to better our practice as future Physician Assistants (PA). One way that can somewhat help PA’s and other health care providers work through these ethical dilemmas is continuing education activity. If we place a larger emphasis on continuing education activity, this may encourage cultural competence which is defined as the ability of health providers and organizations to deliver health care services that meet the cultural, social, and religious needs of patients and their families. (Swihard, Et al. 2021). More specifically, cultural competence training and developing policies and procedures that decrease barriers to provide culturally competent patient care. The four objectives of cultural competence training are identifying the consequences of deficiencies, outlining cultural issues of concern in healthcare, summarizing cultural issues of concern in healthcare, and identifying interprofessional team strategies for improving care coordination and communication to advance cultural competency and improve outcomes (Swihard, Et al. 2021).
Physicians have historically been the prime decision makers in the physician-patient relationship, and paternalism has long been embedded into medicine. However, in 1977 the concept of autonomy was widely accepted as one of the pillars of medical ethics. Oftentimes, as stated previously, there are conflicts between the patient’s autonomy and the clinician wanting to do what is clinically best for the patient. We see this conflict in the case of Stamford Hospital V. Vega, parental-child care, and many religious cultures. When religious beliefs trump the medical duties of a provider to abide by beneficence and non-maleficence, it often leaves us with the dilemma of where a patient’s autonomy and clinician’s beneficence can agree. With the technology and information available to us today, reaching a consensus with our patient about their care whilst still respecting their autonomy, clinician’s nonmaleficence and beneficence is possible! We see that with the multiple medical options available to Jehovah Witnesses and ethics committees acting as a mediator between patients and providers. If we continue to utilize and explore alternative treatments, many ethical dilemmas that we encounter as future PA’s may be solved.
References:
Abbott, K. (2009, October 1). Law and medicine: Pediatric faith healing. Journal of Ethics | American Medical Association. Retrieved July 8, 2022, from https://journalofethics.ama-assn.org/article/law-and-medicine-pediatric-faith-healing/2009-10
Alternatives to blood transfusions for people having an operation: Information for the public: Blood transfusion: Guidance. NICE. (2015, November 18). Retrieved July 8, 2022, from https://www.nice.org.uk/guidance/ng24/ifp/chapter/alternatives-to-blood-transfusions-for-people-having-an-operation
Berg, L., Dave, A., Fernandez, N., Brooks, B., Madgwick, K., Govind, A., & Yoong, W. (2022). Women who decline blood during labour: Review of findings and lessons learnt from 52 years of Confidential Enquiries into maternal mortality in the United Kingdom (1962-2019). European journal of obstetrics, gynecology, and reproductive biology, 271, 20–26. https://doi.org/10.1016/j.ejogrb.2022.01.028
Chand, N. K., Subramanya, H. B., & Rao, G. V. (2014). Management of patients who refuse blood transfusion. Indian journal of anaesthesia, 58(5), 658–664. https://doi.org/10.4103/0019-5049.144680
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4260316/
Definitions of child abuse and neglect: Summary of state laws. (2009, July). Retrieved July 15,
2022, from https://nic.unlv.edu/pcan/files/define.pdf
DeLoughery, T. G., & Medicine, D. of. (2020, December). Transfusion replacement strategies in Jehovah’s Witnesses and others who decline blood products. Hematology Oncology. Retrieved July 8, 2022, from https://www.hematologyandoncology.net/archives/december-2020/transfusion-replacement-strategies-in-jehovahs-witnesses-and-others-who-decline-blood-products/
Swan, R. (2020). Faith-Based Medical Neglect: for Providers and
Policymakers. Journal of Child & Adolescent Trauma. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7545013/
Swihart, D. L., Yarrarapu, S., & Martin, R. L. (2021). Cultural Religious Competence
In Clinical Practice. In StatPearls. StatPearls Publishing.
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Warner, M. A., Schulte, P. J., Hanson, A. C., Madde, N. R., Burt, J. M., Higgins, A. A., Andrijasevic, N. M., Kreuter, J. D., Jacob, E. K., Stubbs, J. R., & Kor, D. J. (2021). Implementation of a Comprehensive Patient Blood Management Program for Hospitalized Patients at a Large United States Medical Center. Mayo Clinic proceedings, 96(12), 2980–2990. https://doi.org/10.1016/j.mayocp.2021.07.017
