Social, Ethical and Treatment Related Problems Faced by Healthcare Workers in the Care of Head and Neck Cancer Patients: A Narrative Review from the Bioethics Consortium from India

Head and neck cancers (HNC) are the seventh most common malignancy worldwide, with incidence expected to rise by 30% by 2030. Globally, HNC carries about a 50% mortality risk, with two-thirds of cases and three-quarters of deaths occurring in Asia. HNC encompasses malignancies of the larynx, pharynx (nasopharynx, oropharynx, hypopharynx), paranasal sinuses, oral cavity (tongue, gums, salivary glands, palate), and related structures, predominantly squamous cell carcinomas. Major risk factors include tobacco and alcohol use and oncogenic viruses such as EBV and HPV. In India, unique demographics and habits, including widespread betel quid chewing, lead to distinctive subsite patterns such as bucco-gingival cancers. In developed nations, HPV-related oropharyngeal cancers (notably HPV-16/18) are rising and have a better prognosis than HPV-unrelated tumors; distinguishing HPV status using p16 IHC, FISH, and molecular assays guides therapy, including EGFR-targeted agents and de-escalated radiation where appropriate. Management is multimodal and multidisciplinary, involving surgery, radiation, chemotherapy, and extensive supportive services. The ethical landscape in HNC is complex and influenced by social, cultural, religious, and societal factors. Training in bioethics and adherence to principles of autonomy, beneficence, non-maleficence, and justice, along with professionalism, dignity, empathy, truthfulness, and honesty, are emphasized to support decision-making across screening, treatment, rehabilitation, and end-of-life care.

The narrative review identifies a broad spectrum of ethical dilemmas faced by healthcare professionals caring for HNC patients in India across the disease continuum: (1) Screening: Ethical screening requires validated protocols, minimizing harm and anxiety, clear communication, and strict privacy/confidentiality. (2) Public education: While discussing tobacco/alcohol risks is straightforward, addressing HPV transmission via orogenital contact in conservative societies is challenging, risking missed prevention opportunities. (3) Breaking bad news: Patients generally desire full information and shared decision-making; however, family requests to withhold diagnosis, cultural norms, and limited clinician training complicate disclosure, potentially impacting psychological well-being. (4) HPV-related issues: Counseling about sexual behavior, stigma, and advocating HPV vaccination (particularly for boys) present ethical challenges; smoking worsens HPV-related outcomes. (5) Treatment costs: Care is expensive; targeted agents like cetuximab are onerous (reported at 94,544.4 INR), and overall HNC treatment costs can range roughly from 27,702 to 4,065,409.2 INR, creating tension between best care and affordability, especially for uninsured patients. (6) Treatment decisions: Choosing between surgery, chemoradiation, neoadjuvant regimens, and organ preservation involves clinical and ethical trade-offs. (7) Informed consent: Ensuring comprehensible, written consent while avoiding undue fear is difficult; consent is especially complex in elderly patients with cognitive impairment. (8) Disfigurement and body image: Surgical and radiotherapy-related changes impair function and cosmesis, causing body image distress, stigma, relationship strain, and marital challenges; managing these in young patients with high cure potential is ethically complex. (9) Treatment-induced side effects: Radiation and chemotherapy can cause significant short- and long-term toxicities (e.g., xerostomia, osteoradionecrosis, trismus, hypothyroidism, cardiopulmonary/renal toxicity, immunosuppression, metabolic syndrome), undermining quality of life and requiring prolonged multidisciplinary follow-up. (10) Follow-up: Recurrence risk varies by site and stage (<10% to ~50%); guideline heterogeneity (NCCN, ESMO, AIRO, BAHNO) and imaging choices, combined with cost constraints, create management dilemmas. (11) Rehabilitation: Dysphagia, speech impairment, salivary dysfunction, fatigue, dysgeusia, and facial disfigurement hinder recovery; scarcity of allied health professionals in India exacerbates ethical and practical challenges. (12) Referrals to other specialists: Oncologists must ensure appropriate handover to non-oncology specialists (e.g., cardiology, endocrinology, speech therapy, nutrition, psychology), which is difficult in resource-limited rural settings. (13) End-of-life (EOL) care: With 5-year survival ranging 30–70% depending on disease factors, clinicians face decisions about withholding/withdrawing life-sustaining therapies, passive euthanasia, and early EOL communication; patient preferences may conflict with family wishes. (14) Care of the elderly: Altered pharmacokinetics/dynamics, comorbidities, polypharmacy, consent challenges, and caregiver limitations require individualized regimens and coordination across disciplines. (15) Confidentiality and privacy: Protecting protected health information is crucial; breaches cause psychological, social, and legal harms, necessitating robust institutional safeguards. (16) COVID-19: The pandemic imposed severe dilemmas—procedural aerosol risks, postponement of surgeries, shifts to chemo/radiation, delays in care, resource reallocation, suspension of trials, heightened infection risk for patients and staff, and triage decisions—highlighting tensions between public health ethics and clinical ethics. Overall, the review underscores the need for context-sensitive ethical frameworks and training to navigate India-specific social, cultural, and resource constraints.

By cataloging ethical challenges across screening, diagnosis, treatment, survivorship, and end-of-life care, particularly within India’s cultural and resource context, the review addresses the central question of how bioethical principles can guide HNC care. Emphasizing autonomy, beneficence, non-maleficence, and justice, alongside professionalism and empathy, supports shared decision-making, appropriate disclosure, protection of privacy, and equitable access. Recognizing barriers—such as stigma around HPV and sexuality, high costs of targeted therapies, variability in follow-up guidelines, scarcity of rehabilitation services, and rural access gaps—helps clinicians anticipate dilemmas and plan patient-centered strategies. The COVID-19 experience further demonstrates the need to balance individual patient interests with public health imperatives. The discussion implies that targeted bioethics education and systems-level policies (clear consent processes, privacy protections, referral networks) are essential to improve patient outcomes and quality of life while mitigating moral distress among healthcare workers.

Rapid advances in medical science intensify the need to uphold ethical principles in HNC care. This narrative review outlines the spectrum of ethical issues confronting clinicians and presents them schematically to aid understanding. Applying bioethical principles in decision-making can substantially benefit patients by enabling care that is effective, compassionate, and respectful, ultimately improving quality and standard of life.