Running head: SELF-DETERMINATION

Self-determination: Autonomy or Beneficence Hollis Misiewicz The Catholic University of America Washington, D.C.

SELF-DETERMINATION Self-determination: Autonomy or Beneficence Advanced practice nurses often encounter situations in their practice that raise questions about moral and ethical responsibilities. The case presented in this paper involves a forty two

year old woman with a history of breast cancer. She is married and the mother of three children. She has been recently admitted to the hospital with pneumonia needing treatment with intravenous antibiotics. At this time there is no conclusive evidence of recurrence of her cancer but tests have been scheduled to evaluate this possibility. In the meantime, her venous access device has become occluded and the nurse wishes to replace it. The patient is refusing this, stating she does not want any more medicines and is ready to die. The dilemma that this patient situation presents is not uncommon in healthcare. It is important for advanced practice nurses who find themselves caring for patients refusing what the practitioner would deem necessary treatment, to make decisions based on ethical principles in order to provide effective care. This paper will discuss ethical principles pertinent to the abovementioned scenario. It will also attempt to describe appropriate action for a nurse to take in this situation based on good moral actions. Issues The major issue that presents itself when a patient refuses care that is likely to provide a benefit is whether a patient should be allowed to make a health care decision that does not appear to be in their best interest. Fry, Veatch and Taylor (2011a) discuss essential elements needed in order to make a valid decision; (1) disclosure, (2) capacity, (3) comprehension and, (4) voluntariness. Disclosure involves the health professional giving full information to the patient about both the risks and benefits of the recommended treatment. This includes information about alternative treatment that might exist. Capacity includes the patients ability to

SELF-DETERMINATION comprehend the information given, incorporate it into their own values and beliefs and communicate with their caregiver (Fry, S.T. Veatch, R.M., & Taylor, 2011). Voluntariness encompasses the patients free will to make the decision that they feel is right without coercion from others, whether health care providers or family and friends. The capacities for making a competent decision set forth by the Presidents Commission in 1982 reflect Fry, Veatch, & Taylors essential elements (Grace, 2009) . Self-determination has been defined as the right of individuals to decide what will or will not happen to their bodies (Guido, 2010, p. 173). The patient must be informed that

refusing treatment could likely mean a deterioration in their condition or possible death. Another issue for patients refusing treatment might be insurance nonpayment of previous or alternative treatment as companies frequently have clauses which deny payment when beneficial treatments are declined (Guido, 2010). In some cases the state may be moved to intervene with a patients decision. While recognizing that individuals do have the right to determine their own medical treatment the state can potentially override this right if it is deemed necessary to protect third parties, preserve life or protect the public (Guido, 2010). The ANA Code of Ethics (2001) interpretative statement of Provision 1 states that the nurse recognizes the right of self-determination. An important goal for nurses is to ensure that their patients are well informed in order to make knowledgeable choices about their health care. Nurses should give patients information about their treatment that is accurate and understandable. The nurse informs the patient of alternative therapies including the right to refuse treatment (American Nurses Association, 2001). If a patient is unable to make a decision the nurse will act based on what is known about the patient and their wishes, or if this is not possible, decide what would be reasonable under the circumstances (Grace, 2009).

SELF-DETERMINATION In the scenario presented for this paper, stakeholders in the patients decision to refuse treatment would be her family. Her refusal of treatment would affect not only herself and her husband, but her children. Other stakeholders in this case would be her health care providers who strive to provide the best care. In order to determine if the patient has the capacity to make decisions, more information is needed. This might include input from the family as to the patients state of mind or if she has been suffering from symptoms which would most likely

point to a recurrence of her cancer. Physiological problems can disrupt the patients cognition or perception (Grace & Terreri, 2009). An evaluation by a psychiatrist to determine whether she is suffering from a mental disorder which prevents her from making rational choices would provide valuable information as to whether she has the capacity to make decisions. The patients decision to refuse to have a venous access device replaced, thus making it impossible to deliver the most effective treatment for her pneumonia, could possibly lead to her death. This would have a huge impact on her family, particularly her children. They would be left without a mother. In addition to the emotional burden for her husband, if she is a wage earner, it might become financially difficult for her husband to raise the children alone. In addition to this, her health care providers would most likely suffer as well. Witnessing what the staff might consider an unnecessary death can contribute to their feelings of sadness and burnout leading to compassion fatigue. This phenomenon can impair the health care providers health and has been shown to adversely affect their care of patients (Pfifferling & Gilley, 2000). Analysis Autonomy A number of moral principles that are deontological in nature are relevant to the kinds of dilemmas that often present themselves in healthcare. The moral principles that would most

SELF-DETERMINATION heavily influence the health care providers actions in the presented scenario would be the principles of autonomy, beneficence, nonmalificence and fidelity. The principle of autonomy dictates that the health care provider respects the right of the patient to make his own decisions regarding his medical treatment. Patients choose their course of action based on their own values, beliefs, and plans, not their health care providers (Fry et al., 2011). Treatments

recommended by their health care provider can be refused (Fry et al., 2011a). Patients also have a legal right to accept or decline treatment as guaranteed by the Patient Determination Act of 1991 (Grace, 2009). It has been argued that patients know what is best for them and that making their own decisions can enhance their psychological well-being (Beauchamp, 1990). Is this always the case? As stated above, for self-determination to benefit the patient, essential elements are necessary in order to make competent decisions. Patients are never truly autonomous as they are influenced by both internal and external constraints. Cultural beliefs, lack of knowledge, and environmental circumstances all have an influence on a patients decision making ability. The strength of those factors determines the degree of autonomy of the patient (Grace, 2009). Internal constraints such as beliefs and emotions also influence decisions made by a patient. For a patient to exercise autonomy it is important that health care providers assess the mental ability and maturity of the patient to determine if the patient is capable of competent decision making. Appropriate information must be given to the patient in such a way that all the risks and benefits of either accepting or refusing the treatment are clear and understandable. If a patient does not understand the implications of their actions it is important for the health care provider to recognize this. Respecting autonomy in health care means something else besides letting a patient make his or her own mistakes (Grace, 2009, p. 21) , however, it is both ethical

SELF-DETERMINATION and legal for patients to autonomously make medical treatment decisions that do not agree with the health care provider (Fry et al., 2011a). Beneficence and Nonmaleficence The principle of beneficence states that the nurse has a moral obligation to provide care that benefits the patient and to prevent or decrease the risk of harm to that patient. Nonmalificence is the moral obligation to do no harm (Westrick, 2009). In healthcare settings beneficence is seen as a duty of the health care provider, the foundation of all actions of that provider. In the scenario presented in this paper the patient is refusing the means to obtain intravenous antibiotics needed to treat her pneumonia. This is in direct conflict to the principle of beneficence. The patients health care provider would feel that the medication is needed in order to prevent worsening of the patients condition, including, possibly, death. Some health professionals view acquiescing to patient wishes for treatment with detrimental outcomes as a

violation of their professional integrity. The patient does not have an unqualified right to decide their own treatment (Brett & McCullough, 2012). The principles of beneficence and nonmalificence often come into conflict with the principle of autonomy. This dilemma has even made its way into the courts. In the case of Daniel Thor v. Superior Court of Solano County, the court ruled that the patients right to refuse treatment took precedence over the physicians obligation to treat (Guido, 2010). Beneficence on the part of the health care provider can become paternalism if the patients choice is overridden. Paternalism can encompass beneficence if the patient is unable to act autonomously and the goal is to return the patient to a state of autonomy (Grace, 2009). The respect for autonomy became central in bioethics in the United States when paternalism in the medical system was abused. Now it is more likely that patients will be harmed by abuses of

SELF-DETERMINATION autonomy. Many health care providers are all too ready to acquiesce to patient wishes even when the patient is uninformed and ill equipped to make a decision in their behalf (Fry et al.,

2011). In answer to this, the ethicist Sally Gadow developed a definition of existential advocacy which challenges nurses to allow their patients the right of self-determination through decisions based on the patients beliefs and values. The nurse assists the patient become clear about the action they wish to take by aiding them to clarify their values and engage in self-examination in relation to their situation (Fry et al., 2011). Fidelity Fidelity is the ethical principle that one has a moral obligation to keep a commitment made to others. In the case of the nurse, this would translate into a patient expectation that the nurse will provide care that is consistent with the understanding of that care between the patient and the nurse. The nurse will not abandon the patient (S. T. Fry, Veatch, & Taylor, 2011b; Westrick, 2009). Fidelity, as an ethical principle, can also be applied to the patient discussed in this paper. She is a mother of three children. In having those children it is understood that she has a moral obligation to care for them. Interfering with a patients autonomy may be warranted if the patients actions will cause harm to others (Fry et al., 2011b). As previously mentioned, even the state can remove a patients autonomy when the patients chosen action will harm a third party, particularly, minor children (Guido, 2010). The dilemma in this case would seem to be whether the health care provider should respect the patients autonomy and allow her to refuse treatment that could save her life. It would be important to first determine if the patient is truly capable of meeting the criteria for making competent decisions. If she does not, then the dilemma of respecting autonomy is not a true one. If that is the case, the health care provider might choose to stand by the ethical

SELF-DETERMINATION principle of beneficence. Administer the treatment that will save her life and then work toward restoring her autonomy if possible. This type of decision would be based on what is known about the patients values and beliefs thus minimizing the damage in overriding her refusal of treatment. Results The patient in this case is refusing to have a venous access device replaced which would enable her to receive the intravenous antibiotics that are necessary to treat her pneumonia. Prior

to determining the correct action to take it is important to gather more information. First of all, is it necessary for the patient to receive intravenous antibiotics to save her life? If her pneumonia is not that severe and she is generally healthy, perhaps oral antibiotics would be effective. If the pneumonia is severe, the patients overall condition is deteriorated, or culture shows a Pseudomonas or Methicillin-resistant Staphylococcus, then intravenous antibiotics would be the treatment of choice (Watkins & Lemonovich, 2011). Assuming the patient does need intravenous antibiotics to save her life, the next step would be for the health care provider to determine the patients state of mind. In order to respect the patients autonomy it is imperative to ascertain that she is capable of making competent decisions (Grace, 2009). If there is doubt about this, the health care provider would then obtain a psychiatric evaluation to rule out any psychiatric disorder which might interfere with the patients ability to make competent choices (Lantos, Matlock, & Wendler, 2011). The patient has a history of breast cancer and although no tests have definitively determined whether she has a recurrence, the possibility of this may be an overwhelming concern. She may have been experiencing symptoms that strongly point to a recurrence. Perhaps her fear of this has led to a severe depression and feelings of defeat. A psychiatric consultation will determine is this is true

SELF-DETERMINATION and if so, does the extent of her depression interfere with her ability to make competent decisions. It is always important to consult other members of the health care profession when it is not known if a patients decision to refuse treatment is valid (Fry et al., 2011).

If the patient is not able to make a valid decision and someone has a power of attorney for the patient, the choice for treatment would fall to them. This would most likely be the husband. The health care provider would honor their decision. If the patient is capable and still chooses to refuse treatment or the person with power of attorney refuses treatment on the patients behalf, the health care provider must acquiesce to this decision, but not passively. The health care provider should continue to encourage the patient to pursue the care option that promotes their best outcome. A clinician still has an obligation to treat and beneficence implies that care should provide the best outcome. When efforts at persuasion fail, the question is, when should health care providers agree to patient wishes for treatment that will provide suboptimal outcomes? In this case, when refusal of treatment does not affect the care of other patients or the efficiency or fairness of care provided at the hospital, the patients right to refuse treatment is stronger than the right to mandate treatment. Competent patients can refuse treatments even if the treatment is potentially beneficial and the absence of treatment could mean death (Lantos et al., 2011). The health care provider could appeal to the state to interfere with the patients decision to refuse treatment since this could lead to the patients death and leave minor children without one parent. Some cases have resulted in the courts ordering patients to receive treatment in order to provide for the welfare of the children. In one case, however, a spouse argued that other relatives would be able to take over care of the children and the court supported the patients refusal of a blood transfusion which could have been lifesaving (Fry et al., 2011). That case

SELF-DETERMINATION involved the religious beliefs of Jehovahs Witnesses who do not allow its members to receive blood transfusions. Receiving intravenous antibiotics for the treatment of pneumonia is not against the

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religious beliefs of Christians, Islam, Judaism or Jehovahs Witnesses. Christian Scientists rely on prayer and do not seek the care of health care providers or use medicine. In this case, the patient had sought medical care so it is unlikely that she is a Christian Scientist. No obvious religious objections to medical treatment are involved in this case. With this being the case, if the patient is competent to make valid decisions, the health care provider must respect the principle of autonomy over beneficence. The health care provider will offer the next best course of treatment which would include oral antibiotics and proceed with tests to determine if the patient does have a recurrence of her cancer. Conclusion The case scenario presented in this paper involves a young patient with children who is refusing treatment that could potentially save her life. How the health care provider deals with this situation is primarily based on the ethical principles of autonomy and beneficence. The general problem of which ethical principle should be the overriding one will not be determined by simply defending one principle against the other. No more is it likely that the problems of medical ethics under discussion today are resolvable by defending one model against another model (Beauchamp, 1990, p. 155). Every case has to be judged by its own merits and the actions of the health care provider guided by the findings. In general, if the patient is of sound mind and treatment decisions dont harm others, the health care provider must act in such a way that respects the autonomy of the individual. In cases such as this, the goal of the advanced

SELF-DETERMINATION practice nurse is to assist the patient to understand all implications of refusing treatment, help them clarify their values and assist them in exercising true self-determination.

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SELF-DETERMINATION References American Nurses Association. (2001). Code of ethics for nurses with interpretive statements. Silver Spring, MD: Nursebooks,org.

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Fry, S.T. Veatch, R.M., & Taylor, C. (2011). The principle of autonomy. In Case studies in nursing ethics (Fourth ed., pp. 149-173). Sudbury, MA: Jones & Bartlett, LLC.

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Fry, S. T., Veatch, R. M., & Taylor, C. (2011b). Fidelity. In Case studies in nursing ethics (Fourth ed., pp. 196-222). Sudbury, MA: Jones & Bartlett, LLC.

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SELF-DETERMINATION Grace, P. J., & Terreri, P. A. (2009). Nursing ethics and advanced practice: psychiatric and mental health issues. In P. Grace (Ed.), Nursing ethics and professional responsibility in advanced practice (First ed., pp. 317-338). Sudbury, MA: Jones & Bartlett, LLC.

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Guido, G. W. (2010). Informed consent and patient self-determination. In M. Connor (Ed.), Legal & ethical issues in nursing (Fifth ed., pp. 150-194). Upper Saddle River, NJ: Pearson.

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Pfifferling, J. H., & Gilley, K. (2000). Overcoming compassion fatigue: When practicing medicine feels more like labor than a labor of love, take steps to heal the healer. Family Practice Management, 7(4), 39-44. Retrieved from http://www.aafp.org/fpm/2000/0400/p39.html

Watkins, R. R., & Lemonovich, T. L. (2011). Diagnosis and management of communityacquired pneumonia in adults. American Family Physician, 83(11), 1299-1306. Retrieved from https://secure.aafp.org/login/ l

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