• Duke Medical Ethics

Although patient data is often reduced to mere numbers on a screen, such information can be highly personal and sensitive to the respective parties. Confidentiality in medicine serves to maintain patient privacy, prevent shame or vulnerability, and foster an environment for honest communication between the doctor and patient.

The nature of a medical encounter can often make the patient feel vulnerable and ashamed about being in the doctor’s office. Many times, their visit has to do with socially embarrassing concerns regarding family members, domestic violence, or pressures at work, to name a few. Thus, what doctors do and how they interact with the patient influences the likelihood of expression of patient agendas. In order for them to reveal these private details, doctors must listen actively to the patient's story, seeking and noticing evidence for both physical illness and emotional distress. As a rule, physicians should address ICE: ideas, concerns, and expectations. These factors are instrumental for the treatment regimen as the patient doctor relationship humanizes the connection between the two individuals, allowing for the patient to open up the doctor in the process.

Respecting patient confidentiality fosters two-way trust between doctor and patient and addresses the inherent imbalance of power. By openly accepting the patient’s motives for visiting , doctors give some control back to the patient. As a result, patients are more likely to accept medical advice and share with the doctor all the facts needed for good care. Fear of judgement may conceal unrepresented social and emotional agendas; leading to major misunderstandings, unwanted prescriptions, and non-adherence to treatment. It can be therapeutic for the patient to take off their public mask and tell the doctor of any insecurities or anxieties without fear of judgement, enabling the formation of a stable and long-term doctor-patient relationship.

The obligation to keep patient information confidential is linked to respect for patient autonomy, the right to self-determination about our bodies and how they are treated, as well as the right to control information about ourselves, our lifestyles, and our health (O’Brien J, Chantler 2013). The rights of the individual give the patient the ability to manage his or her private information, which extends to the ability to exercise control over his or her life. As the Medical Research Council states, “Keeping control over facts about one’s self can have an important role in a person’s sense of security, freedom of action, and self-respect.” (Medical Research Council, 2010) Indeed, privacy provides patients with a sense of self and a sense of identity.

Doctors not only have an ethical responsibility, but a legal obligation to maintain confidentiality. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) ensures data privacy and security provisions for safeguarding medical information. As a note, in order to give effective treatments, doctors may share the patient’s medical records with other healthcare professionals, but such information is non-identifiable. This is typically not referred to as a breach of confidentiality; instead, confidentiality is regarded in terms of information being shared outside the clinical team.

Disclosure of patient information to solicitors is acceptable after gaining patient consent. This allows insurance companies, employers, and those involved in legal proceedings to request information about patients, but clinical research studies can also use personal data about patients in analyzing certain disease treatments, drug designs, and behavioural studies. An emerging issue in healthcare is the failure of obtaining informed consent from patients for the release of this information. This could be due to certain disabilities or circumstances that prevent the patient from understanding what is being asked of them, or a lack on the part of the solicitor in allocating adequate time to acquire informed consent. Whatever the reason, care should be taken to ensure that the information is being presented in an accessible way so that the patient fully understands, even if it requires additional efforts. The physician should also look for a clear and unambiguous signal from the patient if they do consent and reiterate these desires back to the patient for confirmation.

In many cases, patients are uncomfortable with releasing medical information. Major concerns about information disclosure are usually rooted in concerns about the entity receiving the information, the sensitivity of the data, and the group or individual that controls access. Patients fear that employers and insurance companies will obtain that information and use it against them. In either case, patients want to feel involved in both their care and decisions about research. With the option to decide whether to donate their information to a clinical research study, patients gain an opportunity to feel they are benefitting future generations.

Confidentiality is not absolute, and the best action is not always clear cut. There needs to be a balance between confidentiality rights and “duties to protect and promote the health and welfare of patients who may be unable to protect themselves,” as stated by the General Medical Council. However, a physician has a legal obligation to breach confidentiality when it falls under the mandatory notification of infectious diseases to public health authorities, the mandatory of child abuse, or under a court mandated request.

This request is done in the prevention, detection, or prosecution of serious crime and so that it doesn’t expose others to risk of death or serious harm. As Law and Bioethics Professor Johns Harris states, “One person’s autonomy ends where another person’s autonomy begins” (O’Brien, 2003). For example, the physician can disclose to authorities if a patient not fit to drive continues to do so even after being advised that it is no longer safe to do so. Alternatively, there can be signs of domestic abuse or indications that the patient is planning on doing causing harm to themselves or others. In both cases, the patient’s actions are putting others at risk, and the physician can no longer remain as a passive observer.

There are a variety of things that the physician must consider when deciding whether or not they will disclose patient information. The first is the potential harm or distress that such a disclosure may bring to the patient in terms of their future engagement with treatment and their overall health. Second is to maintain the public’s trust in the health care system—unnecessary disclosure may tarnish public perception of the healthcare system. Third is the potential harm brought to society if the information is withheld. In cases where the number and age of historical records makes it impractical or impossible to seek and obtain consent, the interests of society in using such records for research outweighs the rights of the individual. Over the long term, confidentiality has the practical benefit of improving the health of both the public and the individual.

There is a growing market for confidential patient information, as personalized marketing becomes more profitable and companies seek to better understand consumer behaviour trends. However, in order to maintain patient trust in the effectiveness of the health care system, health care providers must uphold laws protecting patient confidentiality. This entails not divulging such personal details to solicitors without informed consent unless said information poses a risk to the patient or others and there are no better alternatives. In consideration of future medical practice, there are many approaches to supporting clinical research while maintaining patient trust. One way is to change the system of consent to standardize open information such that patient must opt out of having their records shared instead of having to opt in to sharing information with outside parties. Additionally, patients should have total access to health care notes kept on record about them. This transparency will further build trust between physicians and their patients, making a visit to the doctor’s office a more pleasant experience.

This article was written by Amy Pei of Johns Hopkins University. References and acknowledgements can be found in our journal, under "Current Issue."

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  • Duke Medical Ethics

In pediatric clinical settings, patient information is funneled from care teams to parents than expectedly to their children, tasking the parents with providing surrogate consent. Despite this chain of communication, truth-telling between children and parents presents a unique dilemma for many parents prompting evasive maneuvers to avoid the difficult conversation with their children. Foregoing communication with parents ultimately interferes with a child’s autonomy in clinical settings. Despite its developmental-related imitations, pediatric autonomy in clinical settings can be understood as access to basic prognostic and diagnostic information that allows the opportunity to assent to procedures and care plans.

The decision for parents to withhold prognostic and diagnostic information from their children stems from a fear of further distressing the child amid serious or terminal illness. The element of terminality adds finite pressure to guardians facing the choice between transparency or deception in communications with their dependents. This disconnect between parent and child raises questions regarding pediatric autonomy and how much children should be entrusted with receiving information about their bodies or steering their care. Respecting child autonomy is integral to arguing that children have rights that develop in adulthood but can be violated in the present before they have the opportunity to use them (Hubbard 2019). The right to autonomy is a violative right; children do not have full autonomy, but their ability to inherit it in the future makes it wrong to disregard the limited but growing sense they presently possess. Despite the likelihood of patients diagnosed with a terminal illness reaching an age at which they have the opportunity to exercise full autonomy over their care, the neutrality and respect for future must be preserved as it would be for any child in clinical settings.

Children, fundamentally unable to exercise the full extent of their potential autonomy, depend on adults to act in accordance with the rights and needs they possess currently (Schapiro 2003). As such, parents are responsible for upholding their child's autonomy in a clinical setting. By leaving youth voices unattended to, physicians and parents disregard the child’s investment in their care and the budding autonomy they have. Obtaining assent from youth patients displays respect for their developing autonomy and addressing the fact that this child is the agent experiencing care (Unguru 2011). Respecting the pediatric patient as a person, with equal interest in their wellbeing and future, is integral to maintaining patient dignity.

During the pediatric end of life, with hospice and palliative care prioritizing patient comfort, psychological support throughout the dying process is integral to managing the child’s needs during end-of-life. If the child’s need for communication and support are neglected, the child will feel emotionally isolated, being left to cope with their death and other feelings alone. Complicated by their inability to comprehend the medical terms of their health and future, the process of coping with separation and death becomes overwhelming to children. These unaddressed concerns overshadow the child's quality of life throughout their final days (Muris et. al 1996), rendering their palliative care incomplete and ineffective in the absence of prognostic and diagnostic disclosure.

A qualitative study conducted retrospectively reflecting on their decision to communicate with their children uncovered that all parents that did discuss their child’s imminent death did not regret their choice. The interactions during a child’s final days remain indelible on parent’s perceptions of their relationship; engaging in these difficult conversations to facilitate a dialogue about their child’s death promotes healing after the loss of their child (Kreicbergs 2004). In order to enhance their child’s quality of life and reserve their rights, caretakers must be as honest and transparent as age-appropriate, letting the child guide this discovery. The term “appropriate” stems from ensuring that information is presented in a manageable and processable way for the child to open up a discourse about. This varies by age, of course, but the solution to the question of appropriateness is not resolved by neglecting the conversation in general. Parents must understand that though their child may seem immature, their young developmental age does not preclude them from experiencing fear and having a basic understanding of their future.

This article was written by Halle Paredes of Connecticut College. References and acknowledgements can be found in our journal, under "Current Issue"

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  • Duke Medical Ethics

The four lofty pillars of beneficence, non-maleficence, justice, and autonomy are the main principles of medical ethics that govern how medical professionals provide care (Colwell 2013). These pillars dictate them to act in the patients’ best interests, do no harm, protect and advocate for patient choices, and champion equitable distribution of health care opportunities.

These four ideals seem to work together in perfect harmony to clarify uncertain moral implications and consequences to help the care provider make the correct decision. However, when examined under the lens of philosophy, the ethical framework crumbles and becomes a mess of intertwining and dilemma-inducing options that are at odds with each other. While each of the individual pillars are ethical in and of themselves, grouping them under a supposedly cohesive framework could be the reason for the inconsistency in trying to decide if one ideal overpowers another in a particular situation. This proposed idea can be investigated in the ethics of pain management, a field in which existing literature, accounts of health care providers (Colwell 2013) , and mission statements of professional medical societies ( Sulmasy and Bledsoe 2019) show that the four pillars are very relevant in the discussion of pain management delivery.

Pain is a universal yet personal indicative of an underlying distress, and contributes to the feeling of suffering (Fradelos et al 2014). Although pain cannot be truly measured, it can be rated on a qualitative scale of 1-10, with 10 being the most severe pain. However, since it is just a self-report that is only sometimes accompanied by known physiological manifestations (Colwell 2013), its credibility and value are lessened in providing a full picture of the illness narrative.

There is also a fascinating neurobiological side to this. On one hand, not giving pain attention could mean neglecting an underlying problem, while too much attention to pain makes it more of a focus and a problem than it really is (“The Fifth Vital Sign”). The amount of attention we give to pain needs to strike the right balance, a task that is not obvious or objective.

Keeping the theme of subjectivity versus objectivity in mind along with the various contradictions presented, pain management can reveal the complexity of ethically ranking the pillars. Current headlines relevant to this include the opioid epidemic, particularly the physician malpractice of opioid over-prescription, the $200 billion worth of annual chronic pain costs (Cohen et al. 2015), and alarming rates of untreated or wrongly treated pain (Carvalho et al. 2018). It is a mental tennis match of going back and forth between ideals that are all ethical and correct in their own sense, but somehow one could still be more correct than the other(s). The choice made plays a deciding role in the physician’s competence and accountability as well as patient’s outcomes and the quality of healthcare received.

Some examples: 1. Beneficence versus autonomy: a patient might express immense pain and a wish to have more opioids prescribed for pain control. Autonomy is important, since they are experiencing the pain and have a say over their choices. However, if the physician suspects drug seeking behavior, they might think that not giving the patient opioids is truly the best course of action. 2. Beneficence versus non-maleficence: a physician might recommend some intervention, say surgery of some sort, with the intention of helping with an illness or long-term harm but in the short term it might have harmful effects, whether it be psychological, spiritual or physical. 3. Justice versus non-maleficence: the justice ideal would say that a physician needs to treat all patients equally and give the same kind of treatment to a problem. But if one patient has a history of substance abuse while another does not, the physician might be hesitant to treat them the same and not give the same dosage to the former to prevent harm.

A pattern of easily getting into a bind with these arguably opposing ethical frameworks starts to emerge. There are no objectively correct choices. However, then the question becomes if it is even important to stay objective in medical ethics. Having explored how pain is subjective and each illness experience is defined by the person experiencing it, maybe it is so difficult to create an objective framework because it is impossible. Perhaps it is important to be less detached and have one’s own experiences, education, and opinions inform how pain management is handled. Again, the answer is unclear but the inconsistencies have intense consequences.

Given that a lot of medical decisions need to be made quickly and after consideration of a myriad of factors, it is an additional barrier for a provider to go through such a philosophical quandary in urgency. An ethical framework that is able to provide a well-defined foundation to productively make choices when there are opposing principles is key. A relatively more solid, clear-cut ethical foundation could make it easier for doctors who entered this profession in the first place with the desire to do good to be able to do so successfully.

This article was written by Priya Iyengar of Brandeis University. References and acknowledgements can be found in our journal, under "Current Issue"

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