Mr. Z is a visiting professor of biophysics at a large university medical center. The Z family came to the United States two years ago and will be in this country for five years. Family members include the doctor; his wife, Mrs. Z; their two children, who are four and seven years old; and Mr. Z’s mother. The family has adopted the traditions of a prominent culture in their country of origin, where the husband is conventionally the primary decision maker and the husband’s mother is in charge of the household, determining how it is organized. Mrs. Z accepts her mother-in-law’s decisions related to the household and child-rearing practices. Ethical situation:
Mrs. Z discovers a lump in her right breast. She tells her mother-in-law, who then shares the information with her son, Mr. Z. Mrs. Z, her husband, and her mother-in-law go together to a female physician, Dr. F. Mrs. Z is examined without her family in the room. This is acceptable to her culture, since only females are present. She has a mammogram. She privately tells the physician and attending nurse that she does not want her husband or mother-in-law to know the outcomes of the examination and test. She is given another appointment after the results of the mammogram are available. Dr. F and the nurse explain that she needs a biopsy. The mammogram showed a suspicious area, and a biopsy would help Dr. F establish a diagnosis. Mrs. Z chooses to have a biopsy without consulting anyone in her family. She again states she does not want her family to know more about her situation.
The culture is generally family members would go with the person receiving the care but since Mrs. Z is being seen by a female physician, he would not need to be in the room. When Mrs. Z comes into the waiting room, her family asks her questions about what was done. She tells them that nothing was done, that the appointment was just a follow-up. Two weeks later, Dr. F calls Mrs. Z to tell her that the biopsy was positive and that Mrs. Z needs additional treatment. Mrs. Z does not tell her family. She is afraid of having chemotherapy, a mastectomy, or other treatment. When Mr. Z sees the medical bills, he questions his wife about the procedures. She continues to say nothing is wrong but appears unhappy. The nurse calls Mrs. Z to see if she will come into the office so treatment options can be discussed. Mrs. Z states that she will not seek additional treatment and does not want any information shared with her family. Her husband is concerned.
He talks with one of his colleagues, Dr. J, who is a medical doctor, and asks Dr. J to find out what is happening with Mrs. Z. Dr. J calls the office and asks the nurse to provide him with electronic access to Mrs. Z’s records. The nurse states she will talk with Dr. F about his request. Dr. F and the nurse discuss the situation related to patient confidentiality. They use a decision-making process and review the limits of confidentiality and the good or harm in respecting Mrs. Z’s request not to share information. They base their decision making on their commitment to professional standards and their desire to ensure that Mrs. Z receives the best care possible.
Ethical decisions are made every day, by all peoples and all cultures. Ethical values are shaped by culture and can differ from person to person. Ethical dilemmas occur often in healthcare where all peoples and all cultures are thrown together for a common cause—the pursuit of health and well-being. Ethical comportment is important for professionals to insure the stability and success of the profession as well as to foster trust which is vital to all care relationships and especially to nursing. Nursing professionals have a need to recognize ethical dilemmas and to have a systematic process for navigating through ethical decisions. Making ethical decisions is a multidisciplinary process in which the nurse, as a patient advocate and medical professional, needs to be an educated and full participant. Having a working understanding of ethics involves several concepts.
The nurse should be familiar with the ethical code for nurses. The American Nurses Association, the Canadian Nurses Association, and the International Nurses Association all have published ethical codes of conduct for nursing professionals. The nurse should know the law, such as the HIPPA privacy Act in the U.S., in the area where nursing is being practiced. Furthermore, the nurse needs an understanding of patient rights, patient autonomy, informed consent, and the principles of beneficence and non-maleficence. Finally, in order to navigate effectively through ethical decisions, the nurse should have a formal ethical decision-making process to follow that promotes scientific, just, and thorough conclusions. IMPORTANCE OF ETHICAL THEORY
Just as nursing theories provide a framework for nursing practice, ethical theories provide the framework for ethical nursing practice. Ethical theory can be separated into two main types–obligation-based ethics, and responsibility-based ethics(Lachman, 2012). In obligation-bases ethics, theories are formed from the perspective of the person making the ethical ETHICS decision. This person must first decide what they are obligated to do in that situation and then decide how best to do it. Ethical Theories that fall under this heading are Utilitarianism, Deontology (Kantianism), and Particularism. In Utilitarianism, the focus is on the outcome. The aim is to do the greatest good for the greatest number of people. In Deontology or Kantianism (so named for its creator, Immanuel Kant), the focus is on what he called the “categorical imperative.” The categorical imperative asks the question, “can this action be true for all people in all situations?” Unlike Utilitarianism, however, Kantianism also considers that a person has value as an individual.
The emphasis is on the action of doing right, rather than achieving the right outcome regardless of the means. Moral Particularism uses other ethical theories as a spring board, but it focuses on the uniqueness of every patient and situation. Another ethical theory that comes from the teachings of Aristotle is called virtue ethics. In virtue ethics, a person’s virtue or character is built by repetition of virtuous acts. In responsibility-based ethics, the starting point is the relationship. As nurses, we have a relationship of being responsible for the care of the patients entrusted to us (Lachman, 2012). Thus, nursing practice is inseparable from ethical practice. In the American Nurses Association’s Code of Ethics(2010), nurses must practice “with compassion and respect for the inherent worth, rights, and human dignity of every individual.” Also in the ANA Code of Ethics(2010) is the patient’s right to self-determination.
This is found in provision 1.4. Self-determination is another word for “Autonomy,” which is a main focus in patient-centered healthcare today. Much of what we understand about patient autonomy comes from the writings of Immanual Kant. Kant believed that autonomy and self-determination are the basis of human dignity (Nathanson, 1994 ). Practicing respect for human dignity is part of the nursing code of ethics. “Advocacy is a perspective of nursing that, I believe, shapes our whole ‘ethics.’ Advocacy is an intrinsic element of nursing ethics and the legal definition of nursing practice. It arises from a meaningful and respectful relationship between the nurse and the patient, whether person or community (Breier-Mackie, 2001). ”
CONFIDENTIALITY AND REASONABLE LIMITS
Principle of confidentiality:
The principle of confidentiality involves keeping a patient’s personal health information private. Confidentiality relates to personally identifiable health information that is spoken or overheard, written or sent in electronic communications, visible on a computer screen, or accessed by personnel that do not need to have access to that information. Confidentiality is closely linked with autonomy. “Descriptively, autonomy is the capacity for self-governance. Prescriptively, respect for autonomy means (at least) not interfering with persons’ control over their own lives and (perhaps) taking active steps to facilitate such control. (MacDonald, 2002).” In order to have full autonomy, a person must have some control over personal information and who has access to it.
Control of personal information becomes especially important for the patient when the information has the potential to be used to harm the patient’s reputation, expose the patient to prejudice, or even be utilized for manipulation. The health care professional has a duty to facilitate this control of information in all contacts and interactions. In cases where patients are members of vulnerable populations such as children and the disabled, it is the duty of the professional nurse to foresee potential issues that could arise from sharing of information and to avoid and report potentially damaging situations. Fostering this protection and thus autonomy is key to maintaining the trust necessary to promote openness about health issues that is paramount to proper care and diagnosis.
Concept of reasonable limits:
The concept of reasonable limits involves several factors. The American Nurses Association Code of Ethics (2001) recognizes the duty to protect confidentiality is not absolute. While privacy must be protected, there are certain situations where privacy cannot be complete. The first and most obvious is the need to share healthcare information amongst involved professionals to promote continuity of care. Private patient information must be shared for billing purposes. Private information must also be shared if it is in the interest in preventing harm to the patient or others. HIPPA legislation also makes allowances for purely incidental sharing. Rule four, “Incidental Use and Disclosure.” states “The Privacy Rule does not require that every risk of an incidental use or disclosure of protected health information be eliminated.
A use or disclosure of this information that occurs as a result of, or as ‘incident to,’ an otherwise permitted use or disclosure is permitted as long as the covered entity has adopted reasonable safeguards as required by the Privacy Rule, and the information being shared was limited to the ‘minimum necessary,’ as required by the Privacy Rule.27” Other exceptions are data collected for research that is absent of personal identifiers, and mandatory reporting for law enforcement and epidemiological purposes. The most important reason to break privacy whether the patient consents or not involves prevention of harm. The HIPPA Summary, page 8 under “Serious Threat to Health or Safety” states “Covered entities may disclose protected health information that they believe is necessary to prevent or lessen a serious and imminent threat to a person or the public, when such disclosure is made to someone they believe can prevent or lessen the threat (including the target of the threat).”
RATIONALE FOR BREAKING CONFIDENTIALITY:
Thus, A person’s right to privacy is part of his autonomy until it infringes on the rights of others, or when the patient becomes a danger to himself. Confidentiality may be broken for mandatory reporting for reasons of public health, when others may be harmed or for the sake of preventing the patient from harming himself. Another reason to break confidentiality on a limited basis is simply for the purpose of continuity of care. Certain information must be shared amongst healthcare providers and payers like insurance companies in order to provide comprehensive services. “When patients need treatment for a life-threatening illness, they usually accept and follow a physician’s advice. However, an ethical dilemma can arise if a patient refuses to do this. The physician must then decide whether to abide by the patient’s wishes, spend time negotiating and trying to direct the patient toward an acceptable treatment, or disregard the refusal (Nathanson, 1994).” However, nursing has a more patient-centric viewpoint. (Breier-Mackie, 2006) asserts “advocacy is an intrinsic element of nursing ethics and the legal definition of nursing practice. It arises from a meaningful and respectful relationship between the nurse and the patient, whether person or community.”
In the case of reasonable limits, confidentiality absolutely can and sometimes must be broken when there is true potential for harm to others, especially the innocent. A person’s autonomy must not come at the cost of the health and safety of others. This can be found in the ethical principle of utilitarianism. The greatest good over the greatest evil. In cases where someone has threatened physical violence, confessed to a crime, or has a communicable disease that others have come in contact with, confidentiality must be set aside in order to prevent or minimize harm to other persons. This reason is magnified in the case that potential victims are exceptionally vulnerable, such as children, elderly, or disabled. A justification for keeping confidentiality lies in the faith one has in patient-centered care and the principle of autonomy. “patient autonomy is a necessary condition for the determination of beneficial care. Indeed, it is generally agreed nowadays that patients, not physicians, are the best judges of what is objectively in their own medical interest. Making such decisions is seldom easy, neither for caregivers nor for patients. But patients are most likely to arrive at the most accurate decision (Weilie, 2008).”
RESOLVING CONFLICT BETWEEN ETHICAL PRINCIPLES
Ethical principles that would be in conflict if confidentiality were broken in the given case study: The principle of patient autonomy would be in conflict if confidentiality were broken in the case study of Mrs. Z. The patient has the right to choose what type of treatment to receive and even to refuse treatment so long as there is no harm to others. What is debatable in this case is the harm to others. The patient is presumably not very old and she is married with two young children. Her life does not exist in a vacuum. Although the decision might be hers, her choice seems out of character with her life circumstances. Mothers usually have a desire to care for and be there for their children, and children certainly need their mothers. It is unclear what types of relationships are occurring between the patient, her husband, and her mother-in-law. It is possible that an exploration of these relationships could either help explain why she is choosing no treatment or how to help her change her mind.
In order to resolve conflict between two or more ethical principles, it is best to employ an ethical decision making model. Models can help clarify the most important issues as well as identify the stakeholders affected. The ethical principles in conflict should also be weighed against the principle of risks and benefits. For instance, if confidentiality is an important part of the nurse-patient relationship, the benefits for keeping confidentiality include greater trust, continued communication, and more open, honest communication. This is the foundation for creating a therapeutic relationship. However, if confidentiality is kept when there is potential harm to someone, then the benefit of breaking confidentiality to prevent harm is greater than the benefit of keeping the original therapeutic relationship intact. Evaluation of the risks echoes this idea. Risk of relationship loss is less than risk of harm to a human-being. Using a decision-making model and systematically evaluating risk-benefit can help focus on the most important issue at hand to help resolve conflict between ethical principles.
Ethical theory that could support the decision to keep or to break confidentiality: One ethical theory to support breaking confidentiality would be utilitarianism. The greatest good for the greatest number of people would demand that the family keep all its members intact. Two children certainly need their mother. They are also vulnerable and innocent, requiring protection. Utilitarianism would not be concerned that the principle of autonomy was compromised so long as the patient was persuaded to accept treatment and remain available to serve and function for the good of the whole family. CULTURE AND VALUES
1.Compare and contrast the cultural values related to confidentiality for the Z family and for the providers (nurse and physician). The cultural values for the Z family promote decisions made by the husband and his mother. There is an obvious concern for Mrs. Z’s physical welfare, as they responded to her report of a lump and sought healthcare for her. This concern is what the Physicians/nurses and the Z family have in common. In contrast, the cultural functioning of the Z family is less private than U.S. norms. This adds a new twist to the conflict when Mrs. Z pulls the privacy trump card, so to speak, which is unexpected based on her cultural context.
Nursing interventions that could help reduce or resolve the ethical conflict of keeping or breaking confidentiality: There are two nursing interventions that could help reduce or resolve the ethical conflict of keeping or breaking the confidentiality. First and foremost, the nurse must cultivate a relationship with the patient at the first meeting. If nothing else, the nurse must ask enough questions in order to get to understand the patient and their personal view on their situation. Another nursing intervention would be to insure that the patient has family or emotional support present when receiving difficult news and that the patient had an understanding that she and the healthcare team were going to work through the diagnosis together.
Although in some cases, insisting on this presence may seem to be usurping patient autonomy, “the respect patients are seeking is not a respect of formal autonomy, but respect of autonomy as personal uniqueness (Back, 2005).” A diagnosis should be presented as the beginning of a process, not an end. Once the patient has received a diagnosis, they should be given time (when possible), and support through follow-up appointments, counseling, and local support groups. It should be noted that a serious diagnosis could trigger a kind of grieving process where patients may experience, anger, denial, bargaining, depression, and acceptance in an unpredictable sequence.
According to the American Cancer Society (2013), “each person will respond to the diagnosis in a different way.” Listening to the patient is an important supportive measure, but the ETHICS listener must not force communication, but remain available to listen until the patient is ready to talk. Erratic behavior is normal after a diagnosis of cancer. Some people with cancer may act like children and become needy during illness. The cancer diagnosis and treatment phase is usually an anxious time for people. There’s fear about the many changes that come with cancer—money and job changes, body changes, and even changes in personal relationships (ACS, 2013).” No one should face a cancer diagnosis alone.
Influence of culture on values:
Culture is the environment in which values develop. Values can be universal, however, many are culturally specific, and specific to individuals. Values are formed by the people, location, economics, and experiences to which each person is exposed. Kohlberg, who ascribes to ethic of justice, theorized that there are universal truths of right and wrong that are arrived at through reason. Gilligan, who saw a different view of moral development referred to as ethic of care, saw moral development in the context of a caring relationship where needs are evaluated and then met. As nursing is both a science and a caring profession, there seems to be room for both of these theories. In order for a nurse to be culturally competent, the nurse needs “an understanding of the perspectives, traditions, values, practices, and family systems of culturally diverse individuals, families, communities and populations they care for, as well as a knowledge of the complex variables that affect the achievement of health and well-being (Douglas, 2009).”
Ethical decision-making model:
The ethical decision-making model I use in my practice comes from “A Guide to Moral Decision Making” from Chris MacDonald, Ph.D. (2010). It consists of the following steps–
A. Recognizing the Moral Dimension
B. Who Are the Interested Parties? What are their Relationships? C. What Values are Involved?
D. Weigh the Benefits and the Burdens
E. Look for Analogous Cases
F. Discuss with Relevant Others
G. Does this Decision Accord with Legal and Organizational Rules? H. Am I Comfortable with this Decision?
1) If I carry out this decision, would I be comfortable telling my family about it? My clergyman? My mentors?
2) Would I want children to take my behavior as an example? ETHICS
3) Is this decision one which a wise, informed, virtuous person would make?
4) Can I live with this decision?
Model applied to Case Study:
In the case study, the moral dilemma lies in whether or not to break confidentiality since the patient is refusing life-saving treatment that is likely to be curative if acted on quickly and the patient has chosen to keep the diagnosis secret from the family. This creates a knowledge vacuum preventing anyone from acting based on the actual life situation, and the patient, herself refuses to act or to connect with anyone. The interested parties are the patient, her husband, children, mother-in-law (based on cultural norm) and the Medical staff—physician and nurses. The values involved include autonomy/privacy, family culture with the husband and his mother running the family, the medical values of beneficence and non-maleficence. The benefits to breaking confidentiality would be to inform those close to the patient that her diagnosis is serious, but potentially curative treatment is available.
Her family could likely be a system of encouragement and support for her. If the patient is in denial or avoidance, her family could help her see the situation more clearly and help her make the decision for some type of treatment. A burden would be loss of trust from the patient. Potentially, the patient’s family may be smothering rather than supportive. It could also be that the patient will be rejected by her husband due to the diagnosis. Finally, a possible burden is that the patient’s decision was a reaction to a difficult diagnosis and only temporary. Thus, the breaking of confidentiality would not have been necessary.
Similar cases can be found in medical literature. One was found involving depression and refusal of what would otherwise be considered normal treatment (Hughes, 2005). This case should be discussed with the physician involved, and perhaps a medical ethicist, and someone familiar with the culture that could provide insight. Another relevant resource would be the American Cancer Society who could at least provide information to the healthcare professionals even if the patient was not interested. They have likely dealt with similar situations before. The decision to break confidentiality is in a legal gray ETHICS zone. It should be avoided if at all possible. However, HIPPA and the ANA Code of Ethics acknowledge that confidentiality cannot take precedence over preventing harm to self or others.
If this took place at my facility, I would have to consult with my nurse manager at the very least and maybe others in the facility, like the privacy officer to make sure I was not acting against Hospital policy. However, we do not have any written policy that is different from HIPPA. I would be comfortable with pursuing a deeper relationship with the patient before an outright break in confidentiality. For instance, I would continue to attempt contact to set up another appointment which is medically appropriate. Pamphlets of support groups could perhaps be sent to her address. Also, the doctor could simply acknowledge that the bill was not in error since that was an incidental breach and no doubt the husband is involved in either providing insurance or paying the bill. This may help the family to continue to pursue the truth. If these were the actions taken, I would feel comfortable acknowledging them to other people significant to me. I would summarize my decision as maintaining confidence/privacy without being foolish. This is something I would teach my kids. I think this decision is one that a wise, virtuous person would make, furthermore, it is one I could live with even if I were sued by the patient.
Common ethical dilemmas and how they influence pt. care:
One of the most common ethical dilemmas is who can and should give consent for the patient. It sounds clear that the patient should give her own consent unless unable, then a designated person or next of kin should take over. However, this often doesn’t work out neatly in reality. Sometimes both the patient and next of kin seem a little “off.” Perhaps they are making decisions for themselves, but they do not appear stable or rational. Many times families have in-fighting and manipulation. Sometimes the legal next of kin is so distant or removed from the desires of the patient that they are a very poor choice to make medical decisions on the patient’s behalf. Often these conflicts do not surface until after some great trauma where the patient is incapacitated and suddenly they are at the center of a territorial war.
Unfortunately, this causes a ETHICS huge drain on staff time and energy as the situation is sorted and the patient is often left in limbo. It is difficult to practice ethical decision-making when key players are acting un-ethically and are super-charged with emotion. Another common ethical dilemma that affects the care of the patient is when family wants to continue full rescue measures on a patient that has little chance of recovery or quality of life. This is seen often with a 90+ year-old patient that has coded and we continue through ACLS measures although none of the medical personnel think that the patient has enough strength to recover. This is especially a problem when the family is from out of town, has expressed a desire to be at the bedside for the patients “passing,” but says they can’t get there until Friday and the day is Tuesday. The patient may be subjected to chest compressions, shocks, and other interventions multiple times in effort to time their death in a convenient way for the family. This adds in a third ethical dilemma as an ICU bed is being kept unavailable to other patients.