The Legal and Ethical Considerations of Disability and Healthcare Decision-making

1. Introduction

A disability is a condition that limits a person’s ability to engage in daily life and society activity, whether it is physical, cognitive, sensory, or emotional. In addition, the healthcare decision-making procedure is the process of making healthcare-focused decisions and informed choices for medical treatments and facilities about healthcare providers. Healthcare service providers are developing strategies to address the unique challenges faced by individuals with disabilities. They may have trouble gaining access to healthcare services or communicating their requirements/ needs to healthcare providers. They desire to receive the same level of care as individuals without disabilities. Therefore, it becomes crucial for every healthcare provider to collaborate closely with all patients. The patient’s family should be informed promptly, and all health-related decisions should be deliberated and communicated as soon as possible for individuals with disabilities to receive the care they require to live healthy, fulfilling lives.

2. Legal and ethical considerations in India

With due respect to healthcare decision-making, the Indian legal system recognises advance directives, which allow individuals to specify their medical treatment preferences beforehand. However, advance directives are still a relatively new concept in India, and there are no defined guidelines for their application.

According to Section 20A of the Indian Medical Council (Professional Conduct, Etiquette, and Ethics) Regulations, 2002, govern the behaviour of Indian medical professionals. These regulations prohibit discrimination against people with disabilities and mandate that medical professionals treat all patients without discrimination.

According to Section 2A of the Rights of Persons with Disabilities Act of 2016, a disability is a long-term physical, mental, intellectual, or sensory impairment that hinders a person’s ability to participate fully and effectively in society. Each individual with a disability must be regarded equally, and their rights must be protected. 

According to Section 94 of the  Mental Healthcare Act of 2017, which protects and promotes the rights of individuals with mental illness. The act requires informed consent for medical treatment and restricts electroconvulsive therapy and psychosurgery.

Ethical considerations like informed consent, autonomy and proper care are among challenges like Patient complexity, severe workloads, increasing medical knowledge, and ethical quandaries are all factors to consider. Individuals have the right to be fully informed about their medical condition and treatment alternatives while they  make treatment decisions based on this knowledge. Autonomy means people can choose their own healthcare. Disability or others’ perceptions of the same may impede autonomy for disabled people. In these circumstances, healthcare practitioners must ensure that disabled patients can fully exercise their autonomy while receiving care. Doctors must treat all patients including even those with disabilities with dignity and respect.

3. Judicial Pronouncements – 

• National Legal Ser.Auth vs Union Of India & Ors (2014) SCC 438: This case involved the liberties of transgender individuals in India. The court ruled that transgender people have the right to self-identification and all rights guaranteed by the Indian Constitution, including the Right to Healthcare. Additionally, the court ordered the government to ensure that transgender people have access to healthcare services without discrimination.
• Disabled Rights Group & Anr. v. Union of India & Ors (2018) 2 SCC 397): The Supreme Court of India ordered the government to make all public spaces and government buildings accessible to individuals with disabilities. The court also ordered that all websites and mobile applications be made accessible to persons with disabilities.
• Dr. Jeeja Ghosh & Ors. v. Union of India & Ors (2016) 7 SCC 761: The court ruled that denying a person, with a disability, medical treatment constitutes discrimination and violates their rights under the Constitution of India. A woman with a physical disability was denied admission to flight  due to her disability in this case. The court ordered the medical school to admit her and provide reasonable accommodations so she can participate in the programme in its entirety.
• Ravinder Kumar Dhariwal & Anr Vs Union of India (2003) 4 SCC 524: The Supreme Court of India ruled that a doctor or hospital may not refuse to treat a patient with a disability on the grounds that they lack the required facilities or expertise. The court determined that physicians must provide medical care to all patients, regardless of their disability.

4. Challenges and issues – 

The challenges and issues faced due to disability and decision making can differ from individual to individual based on their circumstances. The same are dealt by the family members as a consequence of various obnoxious decision-making processes – 

• Access to healthcare and information – Due to speech, hearing, or visual impairments, individuals with disabilities may have trouble communicating with healthcare providers. This can make it difficult for them to communicate their concerns, requirements, and preferences to healthcare professionals and to comprehend medical information and treatment options presented to them..
• Stigma and discrimination – It is possible for healthcare providers to stigmatise and discriminate against individuals with disabilities, which can result in inappropriate or inadequate care.
• Lack of awareness – Due to cognitive or intellectual impairments, people with disabilities may experience difficulty making healthcare decisions. This can create ethical dilemmas for healthcare professionals and family members who must make decisions on their behalf.

5. Recommendations

1. The significance of knowing one’s rights, especially in the context of medical discrimination. A person is subject to medical discrimination when they are treated unjustly or unequally due to their medical history, condition, or disability.
2. By understanding their rights, individuals can take precautions against medical discrimination. If they believe they have been discriminated against, this may involve obtaining legal counsel or filing a complaint with the appropriate authorities.
3. Additionally, individuals must be aware of the possibilities and repercussions of legal action. This requires knowledge of the legal processes and procedures involved in registering a complaint or taking legal action, as well as of the potential outcomes and repercussions of doing so. Individuals can fight against medical discrimination and safeguard their rights in the healthcare system if they are aware of their rights, as well as the possibilities and repercussions of legal action therein.
4. People with disabilities have the freedom to make their own healthcare decisions so long as they have the capacity to do so. Respecting their autonomy and involving them as much as possible in decision-making is essential.
5. In the perspective of legal process awareness, one may understand how organisations such as the Disability Rights Legal Centre in the United States assist individuals as they traverse the complex legal procedures related with healthcare discrimination. Throughout the trip, these organisations give critical assistance and unwavering support, ensuring that individuals affected receive the required direction.
6.   When discussing supported decision-making, foreign initiatives that advance this notion, such as Australia’s National Disability Insurance Scheme, must be highlighted. Individuals with disabilities can use this system to exercise their autonomy in healthcare decision-making while obtaining help from trusted individuals.
7. . Consider guardianship as a last resort – Guardianship is a legal arrangement in which a court appoints a person to make decisions on behalf of a disabled individual who is incapable of doing so for themselves. Nonetheless, guardianship should only be considered after all other options have been exhausted.

Conclusion – 

Improving the legal framework for disability and healthcare decision-making is essential to guaranteeing that individuals with disabilities have the opportunity to make their own healthcare decisions. This includes laws that mandate informed consent and supported decision-making, as well as those that allow for the appointment of legal guardians, trustees, or nominees for persons with disabilities who require such assistance.

To ensure that individuals with disabilities receive equal and appropriate healthcare, education and awareness of healthcare professionals and the general public are essential. This may include training for healthcare providers on how to communicate effectively with individuals with disabilities, as well as campaigns to reduce discrimination and stigma.

The inclusion of people with disabilities in decision-making is also crucial. This can be accomplished by providing information and resources to assist people with disabilities make informed healthcare decisions, and by involving them as much as possible in the decision-making process. A comprehensive approach to disability and healthcare decision-making must consider legal, educational, and cultural factors to ensure that people with disabilities receive equal and appropriate healthcare and are empowered to make their own health decisions.

Finally, it is essential to consider cultural and religious factors when making healthcare decisions. This can involve respecting the values and beliefs of individuals with disabilities, as well as recognising how cultural and religious factors may influence healthcare decisions.

The Author, Saloni Mehta, is 2nd year law student at Symbiosis Law School, Pune.