Abstract
The medical sub-specialty of Oncology presents diverse ethical dilemmas, often challenging cancer healthcare workers with difficult-to-handle clinical scenarios that are tough from a personal and professional perspective. Making decisions on patient care in various circumstances is a defining obligation of an oncologist and those duty-based judgments entail more than just selecting the best treatment or solution. Ethics is an essential and inseparable aspect of clinical medicine and the oncologists as well as the allied health care workers are ethically committed to helping the patient, avoiding or minimizing harm, and respecting the patient's values and choices. This review provides an overview of ethics and clinical ethics and the four main ethical principles of autonomy, beneficence, non-maleficence, and justice are stated and explained. At times there are frequently contradictions between ethical principles in patient care scenarios, especially between beneficence and autonomy. In addition, truth-telling, professionalism, empathy, and cultural competence; which are recently considered important in cancer care, are also addressed from an Indian perspective.
Keywords: Autonomy, beneficence, cultural competence, empathy, ethical principles, justice, non-maleficence, onco-ethics, professionalism, truth-telling
Introduction
According to healthcare educators, a decline in the values and ethics from past among the professionals is a matter of concern to both society and the fraternity.[1,2,3] To substantiate this, a review based on a longitudinal study[4] showed a decline in empathy among trainees during medical training undermining professionalism and quality of care. To ensure that doctors establish ethical competence, moral and ethics education should start at home, continue at medical school, and continue beyond graduation.[5] Yet, the current educational framework emphasizes therapeutic concerns and skill development over inculcating ethics and morality.[1] Healthcare personnel face many ethical challenges, and lack of training often leads to mismanagement, impacting decision-making and unresolved conflicts, resulting in discontent, distress, and moral injury.[6,7,8] Distress further leads to job dissatisfaction and fatigue, compromising patient care and the reputation of the healthcare establishment.[6,7,8]
Medical ethics is based on Beauchamp and Childress’ ethical principles and the four main principles of autonomy, beneficence, non-maleficence, and justice form the basis for how the ethical dealings and behavior are to be conducted in health care disciplines across the specialties. Healthcare professionals must keep this principlistic approach in mind and make the best decision and choose the best interventions in the best interest of the patient and their family.[9] Healthcare practitioners make sound clinical decisions that benefit patients, prevent harm, and respect patient and families, and their societal preferences and views.[10,11,12,13] Given this, structured bioethics training and a rigorous approach to ethical issues would assist healthcare professionals in those ethically challenging situations.
Oncology, as a medical specialty, is devoted to the diagnosis and treatment of cancer; and provides follow-up care and supportive care for terminally ill cancer patients. Palliative care in the specialty deals with pain management and associated discomforts. Community oncology services educate the public on cancer prevention, sensitize them, and screen populations for cancer. Today, oncology is one of the key medical sub-specialty filled with divergent ethical issues.[14,15] This review is based on the tenets of bioethics put forth by Beauchamp and Childress’ attempts to emphasize dilemmas faced by oncologists and healthcare workers in the Indian context.
Autonomy
Autonomy in medicine is the rational ability to make voluntary decisions about medical options and live one's life according to one's true principles or desires.[16] It embodies the right to exercise and express independence in health care.[17] Without autonomy, even the best therapy violates medical ethics and the professional legal framework. Consent and assent derive from patient autonomy. When there is a disagreement, the patient's wishes and values outweigh the healthcare worker's priorities.[18]
Once diagnosed with the disease, cancer patients and their families can choose their doctor, hospital, and type of treatment.[17,19] Even after understanding the therapy and risk-benefit variables offered by the oncologist, some patients choose unproven modalities based on personal beliefs or family experiences rather than medical facts and treatment options.[20] Oncologists face ethical dilemmas when patients or families reject mainstream oncological care and choose unproven therapies. In these situations, the dilemma is on whether to prioritize “patient autonomy” or “beneficence.”[14,18] Oncologists struggle to keep patients hopeful and help them choose and follow conventional care.
Informed Consent
Informed consent is the most significant medical ethics process which is based on free choice and voluntary decision made by a competent or autonomous individual after disclosure of sufficient information and consideration. To help capable adult patients make informed decisions, doctors must disclose all pertinent information to them and their families.[16] Parental and child/adolescent consent is recommended for patients over 7 and under 18.[17,21] In emergencies and when the patient is an orphan or physically incapable, the physician may make decisions based on what is best for the patient and beneficent. It is a legal requirement to obtain informed consent which aims to protect the patient's autonomy.[22]
In oncology, the informed consent process for therapeutic interventions differs from that of clinical trials and research. Before starting routine clinical care, the treating doctor/s explains to the patient and family or carers about the treatment purpose, techniques, alternatives, costs, risks, advantages, rights, and decisions to assist the patients and their family members in making informed decisions. Oncologists must decide how much information to give cancer patients for informed consent without causing them undue distress. Each patient's disease type, status, and stage demands a unique informed consent form, either a custom-made written one or a printed form. In oncology, getting informed permission for vulnerable patients who are unable to make decisions owing to medical, educational, or linguistic obstacles is vital and legally binding during treatment.
Beneficence
Beneficence emphasizes the physician's duty to alleviate patient suffering and avoid bodily, moral, and mental harm[23] which is underlined in the Hippocratic Oath. Beneficence considers well-being as a moral issue and is often seen as selfless and non-obligatory.[24] Beneficence is subjective and often physician's view of “medical benefit” differs from the patient's perspective and doctors have a moral obligation to prevent any harm. Medical disputes should be discussed and resolved to prevent any future breaks in doctor-patient relationships. Doctors should respect the human rights, decency, and confidentiality of patients under their care. Breach of confidentiality can cause loss of trust, psychological discomfort, or financial loss for the patient and may lead to litigation later.
In India, oncologists face ethical dilemmas while treating patients with poor prognoses, co-morbidities, and in the absence of family members to care which is not uncommon. A kind approach is needed from the healthcare provider taking into consideration the patient, family, and their socioeconomic status while planning the treatment. Doctors should use their best discretion when giving unpleasant news to minimize distress to patients. The treating physician should also consider pharmaco-economics to lower treatment costs. If the carer is elderly with health issues, the treating doctor has to consider ways to assist both the patient and the carer. In brief, the beneficence includes the selection of the optimum and effective treatment modality, with minimal side effects ensuring a better quality of life.
Non-maleficence
The principle of non-maleficence, which means avoiding unnecessary harm, is the extension of the Hippocratic Oath's “Primum non nocere.” Physicians must “not inflict hurt” according to Beauchamp and Childress.[25] Sometimes the best treatment is no treatment.[26] In clinical practice, twofold effect, negative over positive duties, and ordinary over unusual are vital, and the benefit-harm balance must be continually balanced against anticipated dangers,[26,27,28,29] including risk assessment, risk management, and non-maleficence. Clinical training of health care professionals should aim to instill a feeling of ethical duty to put patients first[28] at an early stage in their career.
In oncology, non-maleficence is a key principle that needs to be emphasized during the cancer care pathway. Overdiagnosis and over-treatment can harm individuals violating the principle of non-maleficence.[29] The cancer treatment modalities when used either as palliative or curative can produce pain or toxicity but justifies non-maleficence as the intent is to eliminate or mitigate the illness.[30] During end-of-life scenarios, a nurse may “not act deliberately to terminate life,” but she has a moral obligation to provide interventions like terminal/palliative sedation, “to relieve symptoms in dying patients, even if the action may expedite death.”[31]
Justice
Justice, “a complex ethical ideal emphasizing fairness, equality, and impartiality” is the most essential criterion in medical ethics.[32,33] It includes all other principles and is vital in patient care, health policy, and research ethics. It evaluates whether something is ethical, legal, fair, and balanced.[33] Justice is foremost to bioethics and morality and all decisions must be based on whether the actions treat everyone fairly in accordance to the rule of the land.
Oncology carers must strive for social and equitable justice. Health equity—the “opportunity for everyone to be as healthy as possible unimpeded by their socioeconomic situation or other socially-determined constraints”—is paramount in oncology. World cancer study reveals that gender [male vs. female vs. third gender], age [young vs. old], race [white vs. black], domicile [rural vs. urban], and socioeconomic [poor vs. rich] are some of the regularly documented inequalities in disease incidence, service, and treatment outcome. India's “Ayushman Bharat Yojana” is a health scheme that envisions bridging the gap and providing justice in health care.[34] Healthcare practitioners should strive for fairness by treating all patients equally. Equity also means that the cancer survivors are rehabilitated and reintegrated into society post-treatment.
Truth-telling
Truthfulness in medical ethics is now considered a moral norm. In the past, physicians were the only decision-makers who could withhold information from patients, especially about life-threatening and stigmatized conditions.[35] This paternalistic legacy gives false optimism and disrupts patient-doctor relationships.[35] Most Western doctors feel patients have a right to know their diagnoses and reveal them, while many Eastern cultures do not.[36] Clinically, withholding prognosis and diagnosis violates patient autonomy and may jeopardize the rights of the patient. Given this, many bioethicists believe doctors should always give patients the truth with clarity, sincerity, and honesty.
“Breaking the bad news” is the hardest part of cancer disclosure. It often entails various ethical issues and patients’ and families’ right to information about their diagnosis and illness. Start with “suspicion” or “possibility” of cancer and tell the facts after a diagnosis. Breaking bad news includes cancer confirmation, surgery-induced physical disfigurement, chemotherapy/radiotherapy-induced fertility loss, treatment-induced irreparable health prognosis, recurrence/metastasis post-treatment, palliative treatment, and end-of-life care. The treating doctor must consider “not harm” and how much truth to tell in those circumstances. Most family members in the Indian context think the “disclosure conversation” should be beneficial and the patient should not know the prognosis. In such cases, the treating doctor must weigh patient and carer autonomy, which is an ethical concern.
Professionalism
Medical ethics requires professionalism, which means prioritizing patients’ needs, upholding norms of competence and honesty, and advising society on health issues.[37] Professionalism ensures safe, effective, and ethical healthcare; and is guided by the tenets described in each discipline's code of conduct; and focuses on the patient/client welfare; and well-being in all healthcare decisions and activities.[38,39,40] It is a complex domain that revolves around professional principles and role qualities such as respect for self and others, compassion, self-awareness, honesty, integrity, accountability, and a commitment to ongoing improvement and self-regulation.[38,39,40] Healthcare staff must commit to quality improvement and safeguard patient privacy and confidentiality to gain the trust of patients and families. This dedication entails maintaining clinical competence and partnering with other experts to reduce medical error, improve patient safety, limit overuse of healthcare resources, optimize care, and help patients reintegrate into society.[39]
In Oncology, professionalism reflects professional knowledge, skill, integrity, competence, honesty with patients, patient confidentiality, enhancing quality and access to care, just distribution of finite resources, sustaining trust through conflict management, and fulfilling professional responsibilities as essential constituents. On a non-clinical front, health practitioners should avoid unprofessional behavior such as inadvertent disrespect for coworkers, confidentiality breaches, and dishonesty about unpleasant experiences.[38,39] Conscious attempts should be made to avoid personal confrontations with colleagues, patients, and visitors, and complaints must be handled discreetly and politely.[38,39] Doctors should set limits with patients, protect vulnerable groups, and not abuse patients for sexual, personal, or financial gain. Doctors must communicate effectively and empathetically with the patients.[39]
Empathy
Empathy—the ability to understand another person's feelings and ideas and see things from the patient's perspective—is innate but can be taught, practiced, and improved.[41] Ethical decision-making involves empathy and it helps healthcare workers understand patients’ perspectives and build trust. Listening, understanding, and paying attention to patient's emotions and what matters to them is a fundamental skill and needs to be reciprocated sincerely by each member of the healthcare team. An innate nature of empathy will help healthcare personnel make fair, patient-centered decisions in difficult and emotional situations. This will eventually help patients to bond trust with doctors and lead to a better healthcare experience by combining professional and emotional awareness among its stakeholders.[41]
Cancer patients, who experience fear, anxiety, and despair need empathetic treatment. Patients relate physician's manner, accessibility, and competence with empathy along with treatment skills. Perspective-taking, nonverbal communication, real curiosity, active listening, and compassion are components of clinical empathy training. Empathy can be communicated vocally and non-verbally with a physician, like being closely seated with the patient and family carer and speaking with unhurried, softly spoken words; a gentle touch especially when conveying “bad news”; a firmer touch or grip to convey reassurance to a patient facing a difficult treatment choice; to hold the hand of a patient who is dying alone, and all these things comforts the patient and needs to be indicated.[42]
Cultural Competence
Cultural competency is the ability to understand and incorporate elements of race, ethnicity, nationality, domicile, language, gender, socioeconomic status, physical and mental characteristics, sexual orientation, and occupation into health care delivery and structure.[43,44] Healthcare staff should avoid unintentionally categorizing patients based on ethnicity, religion, or cultural preferences and cross-cultural boundaries.[43,44] Cultural competence, cultural sensitivity, and cultural humility strengthen medical ethics which help healthcare workers serve better in their professions effectively and efficiently.[44]
Cultural differences, especially country-specific views, may affect cancer treatment decisions. Nations differ in economic, educational, resources, familial, and religious/spiritual views on illness and health.[45] Culture impacts aspects of health, disease, and death. Traditional societies consider cancer as a “disease of the family,”, and everyone is engaged in diagnosis, treatment, support, conflicts, and finances and takes joint responsibility.[45,46] On the contrary, Western civilizations value autonomy, empowerment, and personal responsibility as a disease.[45,47]
Religious views on health, sickness, and death vary in Eastern and Western traditions. While Westerners believe in overcoming nature and “fighting disease” to get well, Eastern civilizations practice passivity and fatalism to live in harmony with nature.[45] Indian hospice patients seek religious and spiritual care with mental peace before death.[48] This can cause an ethical dilemma for the cancer care team due to the interplay between utilitarian and deontological approaches. Considering the religious and spiritual dimensions in cancer care, doctors must reconcile conflicting belief systems to achieve optimum treatment goals leading to mental satisfaction[49] and the holistic well-being of the patient.
Conclusion
This review addresses the moral and ethical dillemas that are faced by cancer healthcare workers in integrated multidisciplinary care pathways while addressing complex clinical problems. The most important aspect is that in addition, to the technical expertise, an integrated approach to patient care consisting of compassion, clear-sightedness, trustworthiness, integrity, and conscientiousness are the necessary pillars of health care delivery. The health care workers should fulfill the aforementioned tasks based on the ethical principles of beneficence and non-maleficence while respecting the autonomy of the patient and ensuring social justice in the process. The professional life of a healthcare worker is more than just making clinical decisions, it also includes how these essential ethical issues are understood and practiced. Providing empathetic and compassionate care that meets internationally accepted optimal care is a crucial part. This also includes developing and nurturing a shared ethical decision-making process with key stakeholders during treatment. On a closing note, it is suggested that explicit learning outcomes must be included in healthcare professions education and continuing medical/nursing/allied sciences educational activities which will help to build an ethically sensitive and competent healthcare workforce in all medical specialties including Oncology. The role of socially important influencing domains such as religion, spirituality, and cultural paradigms having a significant impact on the medical clinical decision-making process and long-term care of patients cannot be forgotten. Research on the attitudes of practitioners, patients, and carers in the ethical deliberation process during a critical illness such as cancer, as well as the role of social and cultural backdrop above them, is required in pursuit of a better quality of health care.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
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