Major themes in Bioethics and current trends

Advance Care Planning & Advance Directives

Advanced care planning ensures that patients explicitly outline their expectations and demands to be referred to in the event that they lose the ability to participate in their future medical decisions. Advanced care planning entails the process of forming an advanced directive; patients are tasked with reflecting on their own values and desires to be respected in their clinical care. Current developments and areas of debate in this subfield include the conflict between advanced directives and private institutional policies (in schools or nursing homes). Policies vary by state regarding who a patient can appoint as their healthcare proxy and specific requests regarding code status types including but not limited to DNR, DNI, and partial code. There does not exist an universal law as to who is the decision-maker for a patient who lacks capacity. Lack of uniformity across the United States, and internationally, has led to confusion for both healthcare team members and patients. Often individuals assume their loved ones will automatically be allowed to serve as their decision-maker and do not take the necessary steps to document assignment as well as help inform a decision tree for their decision-maker(s) when they may be faced with unusual, challenging, and unpredicted decision-making dynamics. However, state law (most often) informs who will be the patients’ decision-maker and such assignment may contradict the patient’s wishes.

Trends

There are many initiatives both nationally and locally to encourage not just patients but healthcare providers complete their own forms in the hospital setting to expedite inclusion in their EMR (electronic medical record). 

Bioethics 

Bioethics (also termed “medical ethics”) is a field of study and practice which addresses the interdisciplinary intersection between science, technology, law, religion, culture, personal values, and codes of morality/ethics. 

Often consumers of healthcare services -- patients and the public -- are familiar with the field of bioethics in the context of groundbreaking cases, involving either novel medical technology and services such as cloning (e.g., Dolly the Sheep), or highly publicized legal cases (e.g., Terri Schiavo and Jahi McMath). Though sensationalized bioethics tends to make headlines and captivate the public every so often, bioethics is deeply ingrained in all aspects of health delivery including but not limited to clinical care, health policy, scientific research, and the development of medical technology. The foundations of bioethics can be boiled down into four principles. Developed by philosophers Thomas Beauchamp and James Childress, autonomy, justice, beneficence, and non-maleficence are the four major elements that must be upheld to ensure ethical conduct in healthcare. Though these four principles are arguably oversimplifications of the nuanced elements involved in ethical analyses of bioethics issues, Beauchamp and Childress provide a framework to guide the ethical examination of medical issues. 

Current Trends

Bioethics has often been deemed a secondary passionate interest to another practice or discipline, i.e., for physicians or another allied practice (e.g., nursing, social work, chaplaincy, etc) by way of participating on an ethics committee as part of a way to engage in robust discussion with interdisciplinary colleagues about cases or patterns that occur on the clinical floors in a healthsystem or hospital. Bioethics has also been considered a practice within the field of medical research and/or scholarly pursuit whether in informing research practices, serving on Institutional Review Boards (IRB), contributing to the development of educational opportunities for students in learning about medical ethics whilst in school, residency, and fellowships. There continues to be a discord between the voluntaristic nature of ethicists, especially in clinical ethics, and the demands of providing ethics consults, participation on ethics committees, and contributing to scholarly space. Though contemporarily recognized as a field of study, there have been increasing efforts to formalize both the study and practice of bioethics (including all its expertise areas) as a discipline. There is a call to develop value metrics in health systems and hospitals to allocate workload units (e.g., FTE) and leadership support of Ethics Services and its teams. The movement to expand the field of bioethics also includes recognizing the education and experience of those who practice in the field and comprehensively defining this expertise.

BIPOC 

BIPOC - Black Indigenous People of Color. These groups grow in multiplicities. Available resources would be in the LatinX Bioethics initiative, Black and Brown advancements, as well as those of color initiatives to open space in the traditional field of Bioethics to consider both the narratives, social determinants of health factors, and group specific topics. If you are involved in, at any level, any group that should be featured here, please reach out and share a blurb so we can be comprehensive in our genuine representation of the issues and leaders of these spaces.

LatinX Bioethics  www.latinxbioethics.com

The LatinX Bioethics initiative focuses on increasing visibility of LatinX scholars, artist, and activist addressing ethical issues impacting LatinX communities. The initiative is advocating for a LatinX Bioethics subfield to be introduced in bioethics as a space for engaging racial, ethnic and cultural issues that have been neglected in bioethical discourse.  

 Current Trends

One recent trend that has arisen is the sterilization of migrant women in ICE detention facilities. This forced upon procedure not only deprives women of their civil and human rights but also raises both germane reproductive public health policy and bioethical questions as to addressing the tensions between multiple ethical principles similar to the classic trolley problem. 

Part of LatinX Bioethics is also to increase institutional visibility by encouraging institutions to collaborate with bioethicists of color to advance applying ethical frameworks in healthcare, policy, research, and local communities.

Joanne C. Suarez, MBE

Breaking Bad News

Communicating bad news to families and patients proves to be a challenge for physicians. Ensuring that a family and patient is provided an honest and clear explanation of their prognosis, diagnosis, and treatment options (including outcomes) can be overshadowed by a physician’s fear of wrongdoing or accusations about malpractice. Ethical considerations in this subfield include ensuring appropriate language, mutual understanding of all information, avoiding confusing nuances, and many other considerations in communicating with patients and their loved ones. Properly adapting to what information patients are capable of understanding, and moving forward with next steps without “misleading” the patient is critical to successful shared decision-making and trust in the therapeutic relationship.

Language or cultural barriers also pose challenges to physicians' communication with patients and their families. Distinctions between words like “cure” versus “treatment”, though minute, are significant in communicating patient care details without confusing the patient or their families. (Please visit the Intercultural Agility topic to learn more about initiatives to address barriers due to language and cultural connotations and translation services). Accurate and appropriate translation services, in these cases, is integral to ensuring effective and clear conversation when communicating bad news. Additionally, the varied cultural or religious beliefs that patients and families may have must be appropriately fielded by physicians when facing questions regarding faith-based ideas such as medical miracles. Ensuring that effective communication is being had while respecting the belief systems of patients and families is important to consider.

COVID

The challenges that COVID-19 has posed on communicating bad news to patients or families includes the emergence of virtual visits and telemedicine. COVID-19 has changed how providers are able to and feel comfortable with communicating bad news especially when not in person. In addition, COVID-19 has challenged providers forced to expedite conversations to the heart of bad news discussions while also expressing empathy and patience and all the while utilizing technology versus in-person conversation. These can give rise to barriers of being able to communicate empathy such as when one cannot see the provider’s facial expressions, hear verbal tones, or feel the comfort of the provider’s physician presence and assessment of the patient in person. Without the ability to discuss patient prognosis or status updates with families in person due to visitor restrictions, physicians and hospital staff must communicate virtually, interfering with the usual modes of interpersonal communication during these patient-care situations. Though virtual communication with medical professionals may provide clearer, explicit outlines of patient status, diagnosis, or prognosis, there may be challenges including maintaining an appropriate quality of care, barriers to asking questions and interacting more personally with healthcare providers, and ensuring adequate understanding regarding information being shared.

Clinical Ethics

Clinical ethics is a subset of the larger bioethics field that aims to guide and support interactions in direct clinical care. Value conflicts and tensions in healthcare settings tends to arise between physicians and patients, patient advocates, families, and often the law. Clinical ethics aims to distinguish and maintain a standard of care to guide patients and physicians through ethically sound medical practices. The practice of clinical ethics involves consultation (bedside, curbside, committee, care conferences), policy development, committee and advisory groups, stakeholder conversations and interviews, and data metrics to inform performance improvement and best practices.  Common issues in clinical ethics include but are not limited to end-of-life decision-making including advanced directives, disagreements between patients,  their providers, and/or their loved ones on treatment plans which can include strife about non-beneficial cares, informed consent including truth telling and shared decision-making, and the just allocation of scarce resources. 

Intercultural Agility 

In our pluralistic world, clinicians are likely to encounter diverse cultural-linguistic and healthcare system norms which dictate patients’ and loved ones’ understanding, engagement, and expectations. Intercultural Agility builds on the expertise of the interculturalist interpreter for in-situ coaching with intercultural psychosocial insights and recommendations that address multi-faceted multiculturaldynamics based on the cultural identity of both patients and clinicians at each and every moment of the clinical encounter. This informs shared decision-making, clinical treatment plans, and clinical ethics recommendations by focusing on bidirectional negotiations. Despite their best efforts and intentions to engage in culturally sensitive conversations, clinicians often still feel ill-equipped to do so particularly during highly emotional serious illness conversations. This can compromise the delivery of high-quality ethical care. Successful utilization of the Intercultural Agility model often transforms challenging moments to ones marked by joyfulness: flourishing and fulfillment.

COVID

More than ever Coronavirus has revealed deep gaps in healthcare equity. Intercultural Agility addresses the implicit bias, challenges and barriers and more importantly the intercultural psychosocial cognition that contributes to ethical dilemmas. At a time of intense emotional distress, when family members are not allowed to be present with visitation restrictions, in-person interpreter is substituted with a video or phone interpreting reducing the quality of the clinical encounter. An interculturalist can not only “normalize” subtle linguistic nuances and provide intercultural understanding, but also unfold the patients’ emotional status and cultural identity to discover unique personal cultural arts (humor, music, songs and dance) and the patient’s narrative.

One issue that is currently surfacing is the widespread need for administering the flu shot to minimize “the two pandemics” effect. This discussion requires application of an Intercultural Agility (IA) framework for education, negotiations, and resources pertaining to the benefit that would empower minority patient populations to achieve informed consensus regarding the vaccine.

Other Trends

An intercultural agility specialist is a well-established global and international business need that was first employed by the US Army and the United Nations to ensure equitable engagement and positive outcomes. While, hospitals and health systems recognize the need for language access through linguistic interpretation, cultural advocacy is limited within the role boundaries of the interpreter. Interpreters cannot advise or consult on the critical cultural and ethical nuances that are consistently arising within healthcare, unless the patient’s life is in danger. One population in particular that has benefited from intercultural agility has been the Arabic population when engaging in healthcare services. Post 9/11 stigma, political conditions in the Middle East, and the challenges and barriers have contributed to a greater need for ethical spiritual understanding. “Othering” of a very diverse group of Arabs and “lumping” this group in many of the traditional cultural competence training for healthcare, has actually increased the gaps rather than remove barriers and build bridges.

Samira Y. Jubran, MAIS, CCHI, TCI, CHI

Narrative Ethics 

Narrative Ethics is the study and application of each stakeholder’s personally devised and articulated narrative that independently presents in a bioethical exchange often begetting the question of what is the right and wrong decision or outcome. In ethics consultation, narrative ethics is engaged as we seek to capture individual narratives, avoid assumptions about patients’ values and wishes, and acknowledge the role of casuistry and potential for arm-chair ethics consultation approaches. 

Organizational Ethics

Organizational ethics consists of both research and practice of applied ethics appreciating how the many layers of bioethical inquiry can impact individual stakeholders themselves but groups or organizations. Often organizational ethics involves raising ethical patterns and trends to leadership and dissemination from leadership in the form of guidance, resources, and commitments definitions and procedures to deploy ethical behavior. In order to deliver ethical conduct within health delivery systems or institutions, such as hospitals and insurance companies, it is important to consistently operate. Balancing an organization’s culture with employee satisfaction as well as ethical healthcare delivery with maximal integrity is a challenging task. It takes courage for ethicists - whether in research, education, or clinical - to engage and address organizational ethical tensions. 

Personal Beliefs

Navigating the tightrope between respecting a patient's personal beliefs and maintaining a sufficient quality of care remains integral to productive and respectful clinical interactions. Whether these beliefs are rooted in religion or ideology, understanding where patients’ beliefs and boundaries intersect with typical courses of care may require compromises between care teams and patients. Personal belief conflicts can be even more complex when pediatric patients are involved. Determining how parental beliefs should interact with a child’s care and predetermining a child’s own future personal beliefs  fuels bioethically relevant discussions. Most notably, developments in this subfield surround parents and patients who refuse vaccinations for themselves or their medical dependents.

Prenatal Diagnosis and Testing 

Prenatal testing provides patients and physicians with the opportunity to diagnose genetic illnesses in perinates. Through amniocentesis or other tests, valued medical information can be obtained and used to assist mothers with complicated pregnancies or significant comorbidities. Current debates surrounding the ethics of prenatal diagnostic practices involve the potential implications of selecting neonates with non-fatal diseases or disabilities. Further debate within the subfield also encompasses necessary considerations in delivering and discussing this news with patients and their families. Complex family dynamics or family requests of secrets are two integral bioethical relevant matters that stem from prenatal diagnosis and testing.

Physician Aid in Dying

Patients diagnosed with a terminal disease, deemed competent, may decide to actively end their life. This process would require physician approval, prognostic certainty, and confirmation that the patient is competent to make this decision.

The discussion regarding physician aid in dying surrounds two types of medically induced euthanasia: active and passive. Active euthanasia involves the direct administration of a lethal dose of medication to induce death. Passive euthanasia, on the other hand, may require the intentional removal or cessation of lifesaving measures including ventilation or feeding tubes.

Oregon and Vermont were the first two states to adopt Death with Dignity legislation to permit physicians to prescribe lethal medication for end-of-life purposes. An important caveat to Death with Dignity laws require the patient to self-administer these drugs, without physician or third-party assistance. By introducing this element to legislation, the law side-steps more difficult conversations about euthanasia, in which a physician plays a direct, physical role in a patient’s passing.

The first highly publicized legal case regarding a patient’s right to die was Cruzan v. Director, Missouri Department of Health in 1990 in which the guardians of a 30 year-old patient, who fell into a persistent vegistative state (PVS) following a car accident, requested that her artificial nutrition and hydration be discontinued. In a 5-4 decision, the Supreme Court ruled against Cruzan, determining that though competent patients have the right to refuse treatment, incompetent patients are not provided that lattitude. This decision therefore burdened states with determining the legality of physician aid in dying legislature. Another highly publicized case that brought national attention to the right to die movement concerned another PVS patient Terri Schiavo, whose husband requested that Terri’s artificial nutrition and hydration be discontinued despite her parent’s resistance. In 2005, after a lengthy legal battle, a Florida judge ruled in favor of Terri’s right to die and her feeding tube was removed.

Currently, 8 states and Washington, D. C. permit physician aid in dying practices. As patients and policymakers lobby for laws permitting this practice, defining this practice for policy implementation presents ethical barriers. In determining what may be ethically permissible and impermissible within the practice, understanding the appropriate level of physician involvement (and protections of physicians) is central to this ethical debate creating a organizational ethics discussions that go above and beyond the bioethical and clinical ethics challenges of distinguishing the many possible scenarios involving the administration lethal dose of medication, withdrawal of treatment, or palliative sedation. Bioethically significant discussions within this issue include determining appropriate language surrounding physician aid in dying, appropriate and fair regulations in implementing/beginning the dying process and understanding the difference between withdrawing life-sustaining treatment from vegetative patients versus terminally ill conscious patients. In addition, we must appreciate religious and cultural frameworks that define euthasia which may be at odds with secular medicine and the implications that organizational culture and mission may have on physician’s sense of fulfilling their moral, fiscal, and clinical responsibilities to a patient.

Public Health Ethics

Outside of the ethical issues affecting interpersonal physician-patient relationships, bioethics has a significant role in public health initiatives. Population health poses a challenge foreign to clinical ethics; studying a community or population’s health as a whole, composed of intersecting variables and parts, introduces opportunities for discussions regarding the ethics of intervention, political regulation, and personal responsibility. Public health ethics encompasses a wide range of health issues, including managing and preventing disease outbreaks and navigating how the social determinants of health inform a population’s healthcare needs.

Coronavirus

The contemporary coronavirus pandemic is a clear example of public health ethics in action. State-enforced stay at home orders, interstate travel and quarantine regulations, and mask mandates have captured public attention and revealed the significance of bioethics in extreme public health interventions. The pandemic has clearly elucidated the deep ties between public health ethics and more clinically-based bioethics subtopics. Resource allocation and determining how scarce ventilators or personal protective equipment (PPE) should be distributed is directly related to the prevention of disease, so as to minimize the number of patients in need of these scarcities. Public health initiatives work to reduce or control the incidence of disease upstream from critical, clinical ethics problems.  

Other Trends

The nationwide vaccination debate has busied the public health ethics field. Balancing individual freedom and autonomy with the importance of herd immunity and comprehensive protection against communicable, viral diseases is at the crux of this public health discussion. Preventing and containing outbreaks like the flu while ensuring certain members of a population who are medically unable to receive these vaccinations is a priority unforgotten in the discourse concerning ethically treating individuals while considering the responsibility to a larger community. Public health ethics also delves into appreciating the difference between equity and equality especially informing advancements to address social determinants of health. 

Research Ethics

Conducting any type of research using human subjects, including patient’s personal information, requires a thorough assessment of patient’s rights, their ability to understand and consent to whatever data is being collected, and careful consideration of any factors influencing their decision to participate. Historically egregious medical research projects, such as the Tuskegee Study, Alabama’s syphilis experiments, looms over contemporary research regulations. Presently, research ethics debates center around the approval and testing process of novel vaccines on human patients.. 

Current Trends

Balancing the urgency of producing and distributing a vaccine with the importance of a thorough and ethical approval process is a priority within the subfield of resource ethics. In addition access to research protocols can also raise unique ethical quandaries such as cochlear implants which were perceived as an intrusion on the deaf culture which was at odds with hearing impaired individuals who wanted to improve their ability to hear and engage in their hearing society. Another issue within the scope of research ethics is determining how to navigate situations in which patients require medical proxies to provide consent for inclusion in studies. Exploring how medical proxies can sufficiently waive consent for patients without encroaching on that individual’s autonomy, these cases encompass the inclusion of children, disabled, or those otherwise unable to exercise soundness of mind to provide sufficient consent in research studies. 

COVID

Research ethics has reared its head in discussions regarding the dissemination of a future COVID vaccine among vulnerable populations. For those enlisted in military service, or the incarcerated population who are likely more susceptible to spreading the virus to their closely-kept community, there has been discussion about whether these populations should be the first to receive a COVID vaccine as a part of efficacy trials. Determining whether these populations are able to provide sufficient consent has posed a challenge for research ethics in the past, questioning these individual’s ability to consent to research without fear of retaliation or coercion inherent to systemic hierarchies.  

Resource Allocation

Resource allocation explores how decisions are made regarding the distribution of scarce resources, including but not limited to time, medicine, and equipment, among a population. 

Coronavirus

The novel Coronavirus has garnered serious discussions about resource allocation. The classic resource-allocation debates have graduated into tangible, national emergent questions regarding ventilator availability, personal-protective equipment accessibility for healthcare workers, and bed-space in hospitals. Determining who and what populations receive priority in triage, and the implications of wholly deciding to exclude one population raises important and relevant bioethical questions. As resource allocation problems play out on the world stage, bioethicists continue to tackle the current problem.

Other Trends

In the last five years, research and clinical practice have been focused on resource allocation in terms of distributing resources such as organs or machinery in times of scarcity. Notably, the discussion regarding patients suffering from alcohol-related liver disease (ARLD) receiving livers in competition with non-ARLD patients has been subject to debate within the field. 

Treatment Refusal

Patients or medical proxies refusing treatments pose ethical questions regarding patient’s competence, the reach of medical paternalism (i.e. should/when should physicians force treatment or medical intervention), and patient autonomy. 

Coronavirus 

With the current COVID-19 pandemic’s rapid spread and impact on public health, a discussion regarding refusing testing or treatment weighs heavily on contemporary bioethics. Treatment refusal in the COVID-19 era also influences resource allocation issues, an example being when patients who refuse treatment or decline intervention later necessitate a scarce resource and are in competition with treatment/regulation abiding patients.

Other Trends

The contemporary debate within the bioethics subfield of treatment refusal surrounds decisions to refuse* treatment for highly curable diseases. A notable case in Connecticut gained media attention when a 17-year-old  patient and her family attempted to refuse chemotherapy for Hodgkin lymphoma. PThe patient and her family expressed discomfort with treatment options, citing their belief that chemotherapy was “poison”. This case incited debates regarding pediatric assent and autonomy, respecting patient belief systems, and questioning decisions to refuse care.