I Didn't Sleep Last Night: Physician Disclosure

In 2010, a group of sleep specialists published a paper in the New England Journal of Medicine, proposing a thought experiment in which a surgeon stays awake for an entire night after receiving a call for surgery at 11:00 p.m. and not being able to sleep before having to perform an elective surgery at 9:00 a.m. (Nurok et al, 2010). After presenting arguments about the effects of sleep deprivation, the authors argue that the physician must disclose their sleep deprivation as a potential risk to surgery to the patient, and a new informed consent must be acquired.

Two years later, Dr. Charles Czeisler, an author from the original paper, wrote a second paper published in the Annals of Thoracic Surgery, debating the pros and cons of obtaining a new informed consent (Czeisler et al, 2013). Whereas Czeisler wrote in affirmation, Dr. Carlos Pelligrini negated the idea that a new informed consent was needed. Pelligrini aired on the side of caution, pointing out that the lack of consistent research showcasing that sleep deprivation in surgeons affects surgery outcome, requesting a new informed consent before a surgery, in which the patient is most vulnerable, is inhumane, and the issue of the sleep deprived surgeon could be avoided through institutional intervention. Pelligrini argued that disclosure is important, but questions how far this disclosure should go. He posited that if physicians had to disclose whether or not they slept due to being on call, should they also be compelled to disclose whether or not they were able to sleep well? Taking it one step farther, what about other personal information such as financial or marital problems that might also affect their concentration? Although Pelligrini’s hypotheticals are made in jest, his questions touch upon a key issue: how far should physician disclosure go?

Establishing a precedent of mandating physicians disclose health-related variables has the potential to implicate how a physician is treated, especially in the context of physicians who experience illness and disability. Disclosing such information reinforces the stereotype of the “super able” doctor and disproportionately affects disabled doctors. Initially, requiring physicians to disclose health in the informed consent process bolsters a culture in medicine of the “super able” doctor. Doctors are often held to a higher standard of physical and mental health despite operating in environments that often fail to facilitate either. Viewing doctors as the cornerstone of health puts them at risk when they fail to live up to these expectations. Moreover, accessing a physician’s proficiency on the appearance of physical and health metrics alone has proven to be inexact. For example, patients often base expected physician success and skill on length of experience and reputation instead of a more accurate metric, which is a physician’s engagement in “deliberate practice” (Ericsson, 2008). Adding in a metric such as “sleep hours” has similarly been shown to be a weak way to determine physician ability (Banfi et al, 2019). Allowing patients to decide their doctors based on perceived ability and stereotypes without compelling evidence of the implication on outcome, effectively punishes doctors for not being able to meet unrealistic standards on how to apportion their time to practicing.

A much stronger approach to mitigating possible damage from lack of sleep health is by focusing on improving the work environment for surgeons and physicians overall by implementing rules and changes at the administrative level. Instead of relying on the physician or surgeon to make an ethical decision on how to balance practice and sleep while also adhering to rigorous expectations, creating administrative stops and policies that prevent surgeons from engaging in rigorous on call hours and immediately performing elective surgeries the next morning help reduce unproductive competition and peer measuring within surgical units and hospitals (Czeisler et al, 2013).

Additionally it must be recognized that decisions based on the design of operating theaters and protocol can greatly affect the performance of surgeons, which can mitigate specific symptoms of exhaustion that are of concern for patients. For example, surgical checklists and the integration of multiple layers of accountability can greatly assist with human error (McCarroll et al 2014). Requiring information related to physician health be utilized within the informed consent process without clear evidence of impact on outcome does little to solve a greater problem. Instead of expecting the patient to assess the ability of the physician in a moment of vulnerability, better effort could be allocated to placing responsibility on hospital administration as well as careful attention to the design and engineering of the surgical environment to reduce any negative outcomes tied to lack of adequate sleep or other factors that undermine the well-being of physicians.

The disclosure of health related physician variables could also disproportionately affect doctors with disability and chronic illness. Despite the strides that have taken place to diversify medicine in the last few decades, disabled individuals in biomedical fields continues to be underrepresented. It has been argued that the presence of disabled doctors could improve the quality of care provided for disabled patients, and disabled academics and doctors have called for institutions to go beyond mission statements and follow a multifaceted approach in insuring access (Iezzoni, 2016; Bonnielin and Meeks, 2019). Mandating that informed consent should now include the health and disability of the physician could effectively undermine the agency of disabled doctors. Patients would have the decision making power to turn away a physician based once again on the perception of ability. Harmful stereotypes, stigma, and widespread ableism skew awareness of what people with disabilities or chronic illness can accomplish. Ultimately, a patient has the power to reduce a physician to their medical status even if said physician is healthy, well-adjusted, and capable. This reduction reflects the antiquated notion that a disability will always compromise the physician’s efficacy, even if the condition has no impact on the physicians work.

Failure of a physician to disclose their medical condition in informed consent has already been challenged in courts before. In the 2001 case of May v. Cusick, a surgeon was accused of not disclosing his medical history of strokes despite having two in the past and making a full recovery. Later that year in the case of Halkyard v. Mathew, a surgeon performed a hysterectomy which later resulted in complications that led to the patient’s death. It was argued in court that if the doctor had disclosed his history of epilepsy, the patient, a nurse at the time, would have chosen a different physician. In both instances, the courts ruled that because the medical condition did not influence the procedure or the outcome, then it wasn’t necessary for the physician to disclose (Bal and Choma, 2012). Some legal scholars have disagreed. In the case of Halkyard v Mathew, the courts have been criticized for linking the lack of disclosure to health risk and injury in order to appeal to liability in negligence. Instead, the true injury sustained by the patient is they were denied full information and thus the right to decide if they want a different doctor (Ginsberg 2010, 45). However, this still operates under the impetus that one’s disability will affect outcome. If the argument stands that it isn’t related to disability but the patient’s right to decide, then why should disability be a decisive factor in disclosure? Without a clear association between disability and outcome, the disclosure of one’s health status as a doctor walks a fine line between obtaining true informed consent and facilitating discrimination.

One of the driving reasons behind informed consent is providing relevant information to patients that they may construct sound decisions about their health care choices and options. It is imperative then to only include information within the process of informed consent that is based on proven standards. Without clear evidence of patient outcome, mandating the disclosure of any physician variables related to health has serious implications beyond elective surgery. Securing proper informed consent is vital to maintaining trust in the medical profession, but asking doctors to disclose unnecessary medical information is a short term solution to a widespread problem. Institutions should prioritize the health of their physicians as much as physicians prioritize the health of their patients. Mandating this type of disclosure could set back progress made by disabled doctors in the medical field and could further facilitate a culture where doctor’s body is meant to be an able one.

This article was written by Jordan Taylor of the University of Alabama and Jake Howard of the University of Central Florida. References and acknowledgements can be found in our journal under "Current Issue."

Death with Dignity or Insult to Injury?

Euthanasia and physician assisted suicide are ways of relieving pain and suffering for patients in their most vulnerable state, by inducing or speeding up an already impending and painful death. Although these practices accomplish the same thing, there is a critical difference between the two: in physician assisted suicide, the doctor prescribes a lethal medication, in which the patient themselves has to fill and self-ingest on their own terms. Within 48 hours, the doctor then administers a compounded medication containing sedatives and opiates that cause the patient to fall into a coma and die in their sleep. In euthanasia, a lethal dose is solely administered by the physician at the repeated and voluntary request of the patient. Both euthanasia and physician assisted suicide provide a humane way of ending patient suffering in the midst of death; however, it is important to consider how the legalization of these practices may put the most vulnerable patients at risk: the elderly, the disabled, and the mentally ill.

The legalization of euthanasia is a bit of a double-edged sword: while it grants autonomy to terminal patients who are conscious and capable of making the decision, it can also create a space where vulnerable patients that feel like a burden to their family and society are pressured into choosing euthanasia. In the 2017 report on patients requesting physician assisted suicide in Oregon, 55% stated being “a burden on family, friends, and caregivers” as an end of life concern (Public Health Division, 2017).

Especially in the United States, where health care is extremely expensive, patients would more

Often than not feel as though they ought to choose euthanasia for the sake of limiting costs to their family. Insurance companies in the U.S. have already taken advantage of the End of Life Option Act California, passed in 2016. In the case of Stephanie Packer, a woman who was terminally diagnosed with scleroderma and undergoing treatment, asked her insurance company to cover her switch to a different chemotherapy drug. At first, they said it would be covered at the suggestion of her doctors; however, only a week after the assisted dying act passed, the company denied her treatment coverage. When she called to ask why, they remarked that “suicide pills” are covered, and would only be a $1.20 co-pay (O’Neill, 2015). The health systems and legislatures in which euthanasia and physician assisted suicide exist are central to whether or not lines are crossed and vulnerable populations are harmed, while both private and public insurances benefit.

Euthanasia and assisted suicide is also controversial amongst patients with disabilities. In many countries, basic and affordable health care is not accessible for the average citizen, let alone for disabled and chronically ill patients. In an article by Craig Wallace, the former president of People with Disability and leader of the advocacy group Lives Worth Living, Wallace argues that offering euthanasia to the disabled is in no way an act of equality, but rather a stand-in for offering accessible health care to the disabled. Instead of providing adequate health-care and meaningful alternatives, euthanasia is “a fake cruel one-way exit for vulnerable people locked out of basic healthcare” (Wallace, 2017). For patients that are not terminally ill, but require chronic care throughout their lives, the question should not be one of eligibility for euthanasia. Instead, it should be of how to provide the best health care and social services to them in order to create a better quality of life. Without at least attempting to eliminate the want for suicide in disabled patients, euthanasia runs the risk of being used as a treatment option, rather than an end-of-life choice. Economic factors and health care resources play a bigger role in legislature of euthanasia than one would like to admit, but it is clear that chronic, life-time, health care services for one disabled person is exceedingly more expensive than the cost of euthanasia.

The mentally ill are perhaps the most vulnerable population when it comes to euthanasia and assisted suicide (EAS). As a population of patients that is historically taken advantage of, it would make sense that there is legislature to protect those with mental illnesses. Oregon and California specifically mention how psychiatric illnesses are not cause for assisted suicide, and if doctors suspect mental illness to be impairing their judgement they can refer them to a psychiatric evaluation to ensure it is not their reasoning for the assisted suicide request. Conversely, in the Netherlands and Belgium, non-terminally ill patients with psychiatric disorders can request euthanasia (Evenblij, 2019). The very basis of EAS is that patients are mentally competent and capable of consent. However, patients with mental illnesses are mentally ill—how could they be eligible for EAS? In the case of dementia, patients are not considered to be capable of making that decision. There were 166 Dutch cases in 2017 that involved patients with early-stage dementia—when they were still aware and capable of making an informed decision (Dutch Regional Euthanasia Committees, 2017). However, the line becomes blurred when these same patients request the doctor to euthanize them at a later stage, when they are no longer mentally capable of expressing their wishes. In 2017, there were three cases of late-stage dementia patients that were in this exact position. In one case, the physician drugged the woman’s coffee without her knowledge, and when she awoke the doctor had to have her physically restrained while administering lethal medication (Boffey, 2018). The entire case is under investigation, but the fact that this is not a clear and unequivocal breach of consent in the Netherlands is the prime example of the “slippery slope” euthanasia implicates.

The central belief of medicine is to help people, to relieve suffering, and to do what is in the best interest of the patient. Patient autonomy is a key factor in all of these, and laws that serve that autonomy can be both useful and abused. Both euthanasia and assisted suicide provide a sense of dignity and control in the midst of death. However, the capability to consent to these practices can be blurred, especially in cases with elderly patients, those that are unable to express their wishes at that moment, and those with disabilities or mental illness. These are some of society’s most vulnerable populations, and the regulations surrounding euthanasia and assisted suicide need to be able to protect them from the very health care systems and insurances that should be serving them.

This article was written by Jenelle M. Safadi of Cornell University. References and acknowledgements can be found in our journal, under "Current Issue."

Transparency, Trust, and the Doctor-Patient Relationship

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."