HEALTH CARE INFORMED CONSENT
Aeliz Flores
Azusa Pacific University
RNRS 396: Ethics, Issues and Spirituality in Health Care
Dr. Meaghan Ellis, PsyD, MSN
Dr. John Ragsdale, PhD
December 11, 2018
Introduction
One common ethical dilemma that is often encountered by nurses in many healthcare settings nowadays is the issue of obtaining informed consent from patients. This becomes more apparent when it comes to obtaining patient consent prior to procedures like radiation or prior to administering medications that comes with high risk of adverse side effects such as chemotherapeutic agents (Storm, Casillas, Grunwald, Howard, Mcniff, & Neuss, 2008). Oncology nurses often experience ethical dilemmas pertaining to informed consent both prior to patient diagnostic testing such as biopsies and prior to initiation of cancer treatment (Sedig, 2016). Sometimes, well-intentioned family members and loved ones refuse to respect patients’ decision especially if it does not align with theirs. At times, family members and loved-ones even prevent patients from having their autonomy altogether by not allowing the patients be part of their own health care decision making. Some family members also may attempt to block healthcare practitioners from notifying patients of their condition as well as diagnostic testing and treatments available to them despite patients having the cognitive capacity to understand and make decisions for themselves (Sedig, 2016). One of the main reasons that family members and loved-ones often do this is to “protect” their loved-ones from the stress that comes after knowing that they are diagnosed with a serious condition that has the potential to become terminal. In these instances, family members would request to sign the informed consent for chemotherapeutic treatment on behalf of the patient in attempt to keep the patient unaware of the real situation.
Ethical Issue
While it is important for patients to have adequate support from their families and loves ones, they should not lose their autonomy when it comes to their care. Therefore, this paper will examine the ethical dilemma surrounding obtaining informed consent while honoring and respecting patients’ right to autonomy especially those who have the capacity to understand and make decisions for themselves. Patients, especially those who have the cognitive capacity, should be (1) allowed to participate in the decision-making process concerning their health care even when receiving a culturally competent care, and (2) should be notified of their conditions, diagnoses, treatment and prognosis regardless of whether or not their family members or loved ones approve.
Dimensions of Ethical Issue
Informed consent in healthcare is designed so that patients are given the chance to be notified of the risks and benefits of the treatments available to them (Storm, et al., 2008). The idea of informed consent is for patients to become aware not only of treatments, but also of the actual conditions or diagnoses behind it. Although informed consent is both a legal requirement and an ethical duty for healthcare practitioners to fully explain the pros and cons of a procedure and / or high-risk treatments, the ultimate goal of informed consent is for patients to make an informed decision regarding their healthcare choices (Storm, et al., 2008). All informed consent should not only address the risks and benefits of any procedure or treatments in question, but it should also cover the degree of potential harm to the patient, the level of uncertainty especially for treatments or procedures that do not have adequate researches about their efficacy, as well as other available alternatives and choices that may appeal to the patient (Michels & Cahill, 2005). If patients who have the cognitive capacity to choose their own care are eliminated in the whole of process of informed consent, then they are being stripped them away of their right to know and their right to have autonomy in making their health care decisions. Not only does this question the legality of proceeding with the procedure or treatments in question, it also puts in question the morality and ethicality of the healthcare practitioners who allow the patients to be excluded in obtaining the informed consent. Therefore, all patients, who are legally responsible for themselves, those who are capable of making healthcare choices, and even adolescents who are able to understand their health changes should be allowed to participate in their own care regardless of what their family members or loved-ones want even if their purpose is to protect them.
Ethical argument (Bioethical Principle)
As previously argued in the preceding paragraph, the main bioethical principle that is often being violated in the ethical dilemma of informed consent is patient’s autonomy. Autonomy is defined as the patient’s right to freely decide for himself / herself without outside influence whether it be from their loved-ones, family members, or from healthcare providers and staff (Principles of Bioethics, n.d.). This right cannot be denied to patients especially if they have been deemed capable or cognitively competent to make healthcare decisions. Once patient competency is established, it is the patient’s wish and desire that should prevail when it comes to their treatment even when those wishes are not aligned with their loved-ones’ or with the standards of medical care. For example, a patient who was revealed to have multiple lumps or masses after a Computed Tomography or CT scan may be referred for a surgical biopsy to examine if the masses or cancerous or not. Following the medical standards of care, it may be beneficial for the patient to undergo the biopsy and receive prompt treatment in the event that the masses are indeed cancerous. This may in turn prolong the patient’s life or may even be able to fight cancer depending on the response to treatment. However, if the patient decides not to proceed with the recommended diagnostic testing and treatment and he / she is medically competent, by following the principle of respecting patient autonomy it is ultimately the patient’s wish that should guide his / her care even if it goes against medical recommendations.
The bioethical principle of autonomy dictates that it is the patient’s decision that should be followed and not the decisions of those around them (Principles of Bioethics, n.d.). This should also be true in the event that patient’s loved-ones or family members are against the patient’s wishes. There are some instances where family members and loved-ones may request not to inform patient of his / her condition, diagnoses, treatment and prognosis in their attempt to “spare” or “protect” their loved-one of the suffering that may follow once the realization of their current condition is revealed. In Xu’s (n.d.) article Informed Consent and Culture, he wrote about his experience with a patient newly diagnosed with lung cancer in China. The patient’s family insisted that the patient not be notified of her diagnosis because knowledge of her condition may hasten its progression. The family even consented to a surgery which may prolong the patient’s life, all the while not involving the patient herself in the decision making even when she was fully capable to do so (Xu, n.d.). Although the intention behind the family’s action is good which is to shield the patient from more potential suffering, it is still the patient’s right to be fully informed of her condition whether it is good or bad. Moreover, the patient is the only one who can truly experience the full extent of suffering that comes with being diagnosed with a serious or terminal disease and going through high-risk treatments. Therefore, patients should be given the right to fully understand why, and where their suffering is coming from. By allowing patients to go through suffering with the full knowledge of its root cause, they are also given the chance to decide whether to confront it, embrace it, or accept it which may ultimately give them peace of mind.
Theological Concepts
Two theological concepts that come into play in the ethical dilemma of obtaining patient informed consent are; suffering and hope. As previously explained, patients have the right to understand their sufferings by being informed by their healthcare providers of their condition and prognosis. It is no one’s right to take away the knowledge of their illness as well as their treatments from patients. Although the presence of a serious illness with potential to become terminal is often accompanied by suffering both experienced by patients and their loved-ones, patients may feel some relief from their suffering by knowing exactly what to expect and by being educated about the course of their illness and treatments. A patient may be nearing his / her end of life due to a terminal prognosis but may be at peace with it and may be able to come to terms to it by accepting it which frees him / her from suffering. However, this may only occur if the patient was given the chance to be aware of their disease.
Just like in the bible, Job was a very righteous man who was struck with many calamities. Due to the lack of understanding his ordeal, he experienced suffering and even resented God. However, in the end Job was able to see the purpose of his suffering which is to strip him of his excess pride, so he can fully experience the glory of God. Only after realizing what was truly going on and why he was experiencing those suffering did he eventually become free of pain (United Church of God, 2011). Although Job’s experience may not be exactly similar to the experiences of other patients, the same idea applies that suffering can in fact be greater when patients are ignorant of their real condition. Sometimes, the very cause of patients’ suffering is the uncertainty of what will happen to them next. Therefore, no matter how critical a patient’s condition is, healthcare practitioners should always honor the patient’s right to autonomy by allowing them to be notified of their condition together with all treatments and alternatives available to them.
Another theological perspective that is applicable in informed consent ethical dilemma is the concept of hope. According to Cambridge Dictionary (n.d.), hope is defined as “the feeling that something desired can be had or will happen”. Although hope is not necessarily a negative emotion, too much of it can blind patients and especially their loved-ones of the reality of the situation. Hope is apparent in cases like Xu’s (n.d.) experience where the patient’s family consented to surgery even without notifying and asking the patient herself for consent to be able to prolong her life. Hope is also sometimes the driving force when family members or patients’ loved-ones assume the responsibility of being the decision maker when it comes to patient health even without prior patient consent or even when patient is still fully competent. The hope that patient will get better or will have a longer life without having to face the harsh reality of their condition is usually what family members cling to and use as justification for having to hide the truth from patients.
In Green’s (2014) article, Living in Hope and Desperate for A Miracle: NICU Nurses Perceptions of Parental Anguish, family members still cling to hope and miracle that their loved one would somehow survive her condition despite explanations from the medical staff. In the article, patient K was diagnosed with Anencephaly where the infant has a functioning brain stem with the ability to breath, but is unable to think and understand (Green, 2014). The family’s false sense of hope eventually added more to their despair when the inevitable event of patient K’s death occurred. This is an example of when an excessive, and unrealistic hope can create more suffering for the patients and their loved-ones. Misinforming, or not informing patients altogether of their condition and treatments due to false sense hope can be more detrimental to them. Clinging on to false sense of hope can blind patients loved-ones acting as their decision-maker and may just prolong their pain and suffering even more.
Worldview or Cultural Dynamics
Another factor that can get in the way of properly obtaining patient informed consent are the cultural differences among different ethnic groups. On top of the ethical dilemma that already comes with obtaining informed consent, there is also that dilemma of balancing providing culturally competent care while also following the bioethical principles such as patient right to autonomy. For instance, traditional culture of Japan has a collectivistic concept where the needs of the whole family as a group is prioritized over individual needs, they also have a strong sense of responsibility when it comes to taking care of the elders and believe in “Yasurakani” or allowing loved-one to die peacefully and calmly (Saldov, 1998). All these cultural beliefs can get in the way of appropriately obtaining patient informed consent. Japanese family members may feel that they have more authority as a family in deciding healthcare matters for the patient especially if the patient is one of their elders. Because of their belief in dying peacefully, family members may not allow the patient to become aware of their true condition because such knowledge may just cause them anguish and “agony” which can get in the way of them passing peacefully (Saldov, 1998). The concept of patient autonomy may not be perceived as something that is important especially not over their collectivistic cultural beliefs. For Japanese patients’ family members, the idea of being able to shield their loved-ones from the torment that comes with knowing about their critical condition and the need for high-risk treatment is far more important than notifying patients of the reality of the situation (Saldov, 1998).
In another perspective, other cultures simply do not share the same views when it comes to the importance of informed consent as western medicine does. In countries like Brazil, Bhutan and Nepal where the concept of informed consent is not well established as it is here in the United States, patients are often more passive when it comes to being notified of their diagnoses and treatments (Alvarado, Ferron, & Krayem, 2015). Patients from these areas often just rely on the healthcare practitioners when it comes to deciding their course of treatments appropriate for their diagnoses. On top of being more passive than Western patients, these patients also do not see the value of being fully informed. On contrary, hearing the explanations of all the risks and benefits of proposed treatments when obtaining informed consent only creates more confusion, anxiety, and more uncertainty for some of these patients (Alvarado, Ferron, & Krayem, 2015).
While applying a culturally competent care is also crucial in caring for patients from different ethnic backgrounds, healthcare practitioners should not automatically assume that obtaining informed consent from the patient is not warranted solely because of patients’ cultural and ethnic background. Healthcare practitioners should still perform their due diligence of notifying patients of their diagnoses and available treatments especially those who are mentally competent. It is however, understandable to allow family members to decide on behalf of the patients only if the patients wish to delegate the task of decision-making to them after they have been notified of their current condition.
Alternate Ethical Perspective
Healthcare providers are tasked to perform not only the necessary skills needed to promote healing, prevent disease and provide comfort to patients who are in their end of life, but also have the duty to always uphold patients’ interest following bioethical principles. These principles include; respecting patients’ autonomy or freedom to independently make healthcare decisions for themselves, nonmaleficence or do no harm to patients, beneficence or promoting good by doing what is best for the patients, and justice or implementing equal treatment and fairness to all patients regardless of insurance, socioeconomic status, ethnic background, gender etc. (Principles of Bioethics, n.d.). However, these principles which are all equally important can present ethical dilemma to healthcare practitioners when presented with situations where two or more are in conflict with each other. For instance, a patient newly diagnosed of cancer has the right to be informed of his or her condition and practice autonomy in making decisions. At the same time, a chemotherapy is recommended to treat the cancer which has the potential to place the patient at risk for adverse reactions, in essence placing the patient at risk due to chemo which is violating the bioethical principle of nonmaleficence or do no harm. If the patient is lacking healthcare insurance, a delay in treatment may also take place due restrictions which can further complicate the patient’s condition. This in turn is in violation of the other bioethical principle which is justice which states that a patient without insurance should be treated equally as another patient with adequate health insurance coverage (Principles of Bioethics, n.d.). During such instances, it is the duty of healthcare practitioners, along with the input and consent of the patients, to weigh the risks and benefits of each available treatment option and to make a healthcare decision based on what will benefit the patient most.
Nursing Profession
One of many roles that nurses have in caring for their patients is the role of being a patient advocate. As patient advocates, nurses have a duty to be their patients’ voice when they are unable to verbalize their own needs, to always protect their patients’ rights and well-being even if it means questioning other healthcare providers when warranted, and to assist patient in making informed healthcare decisions (Hussung, 2016). Although the primary duty of nurses is to provide a competent care to their patients, it is also their responsibility and moral obligation to ensure that their patients are free of harm, properly be notified of their condition, have equal access to care as other patients and have the ability to practice autonomy as stated in the bioethical principles. By ensuring these and delivering a competent nursing care, nurses gain social trust not only from their patients but also from the society.
Some of society’s general expectations from nurses as described by Fowler (2015) which also applies to the ethical dilemma surrounding informed consent are; (1) being able to provide a caring service to patients that is free of prejudice, (2) placing patients’ interest above others including those of the nurses or other healthcare providers, healthcare institution and family members, (3) upholding the code of ethics as stated by American Nurses Association (ANA) which should be the guiding principles in resolving ethical dilemmas, and (4) collaborating with other healthcare practitioners in ensuring that patients get the optimal care they require. In today’s society, it is not enough that nurses are knowledgeable and competent with nursing skills. Nurses must also be assertive in providing care and must have the confidence to question as well as confront ethical issues that may arise such as that of obtaining informed consent.
These nursing expectations always stand even when nurses have different personal position and beliefs than those of the patients. Nurses must be able to assist in resolving ethical issues even when their personal beliefs contradict that of nursing profession’s beliefs by using the code of ethics as their guide (Hussung, 2016). For instance, a nurse who personally does not believe in concept of hospice because of his or her own set of values, must still be able to provide a competent nursing care if it is the patient’s wish to proceed with hospice because it is part of nursing profession to honor and respect patient wishes. In another example, a nurse may be in agreement with patient’s family members that notifying patient of his or her illness and treatment like chemo will only aggravate patient condition, however the nurse must still follow the code of ethics by informing and assisting patient in making informed decision free from influences of those around him or her including the nurses views.
Conclusion
Nursing has always been about providing a patient-centered care where patients’ health, values, beliefs, morals, and rights are always the priority. In order to provide such care, nurses must always be the voice of their patients and must always uphold as well as guard their patients’ rights. Although caring for patients also involve interacting with their loved-ones and family members, nurses and other healthcare practitioners must not lose sight of the primary priority, the patients. No matter the circumstance, every patient deserves the right to know their condition, diagnoses, prognosis and treatments. No patient should be deprived of their right to practice autonomy in their care unless deemed mentally incompetent to do so.
References
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Storm, C., Casillas, J., Grunwald, H., Howard, D. S., Mcniff, K., & Neuss, M. M. (2008). Informed Consent for Chemotherapy: ASCO Member Resources. Journal of Oncology Practice,4(6), 289-295. doi:10.1200/jop.0866002
United Church of God. (2011, February 18). Learning from the Suffering of Job. Retrieved November 25, 2018, from https://www.ucg.org/bible-study-tools/bible-study-course/bible-study-course-lesson-4/learning-from-the-suffering-of-job
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