Right to palliative care

08 May Right to palliative care

THIS ARTICLE COVERS ‘DAILY CURRENT AFFAIRS’ AND THE TOPIC DETAILS OF “Right to palliative care ”. THIS TOPIC IS RELEVANT IN THE “Society” SECTION OF THE UPSC CSE EXAM.

Why in the news?

On March 7, 2024, in response to a public interest litigation, a three-member Bench of the Supreme Court chaired by the Chief Justice of India D.Y. Chandrachud observed that the right to health includes the right to palliative care.

More about the news

Palliative care is a specialized medical care that focuses on providing relief from the symptoms and stress of a serious illness. Its goal is to improve the quality of life for both the patient and their family. Palliative care addresses physical, emotional, and spiritual needs, aiming to alleviate pain, manage symptoms, and offer support throughout the course of an illness, particularly for individuals with chronic or life-threatening conditions. It can be provided alongside curative treatment or as the main form of care, depending on the patient’s needs and preferences.

Ronald Reagan, the 40th President of the United States, passed away in 2004 at the age of 93, succumbing to dementia after a nine-year battle. His wife, Nancy Reagan, described his peaceful passing as the “greatest gift” he could have given her. In contrast, India’s former Prime Minister Atal Bihari Vajpayee died in 2018, nine years after a stroke left him wheelchair-bound. The final 35 days of his life were spent in the All India Institute of Medical Sciences in New Delhi, where he relied on artificial life support systems before his eventual demise.

These two contrasting incidents highlight the importance of Living will which was highlighted by the Supreme court.

Challenges of palliative care in India

1. Limited Access: Palliative care services are often concentrated in urban areas, leaving rural and remote areas underserved. This geographic disparity in access to palliative care means that many patients, particularly those in rural areas, do not receive the care and support they need.
2. Lack of Awareness: There is a lack of awareness and understanding about palliative care among the general public, healthcare providers, and policymakers in India. This results in misconceptions about palliative care, leading to underutilization of services and delayed referrals.
3. Inadequate Training: Healthcare providers, including doctors, nurses, and other allied healthcare professionals, often receive inadequate training in palliative care. This lack of training limits their ability to effectively manage symptoms, provide psychosocial support, and engage in end-of-life discussions with patients and their families.
4. Limited Integration: Palliative care is not fully integrated into the healthcare system in India. Many hospitals and healthcare facilities do not have dedicated palliative care teams or protocols in place for the provision of palliative care services. This lack of integration results in missed opportunities to address the palliative care needs of patients with serious illnesses.
5. Resource Constraints: There is a shortage of essential resources for palliative care, including medications, medical equipment, and trained personnel. This shortage limits the ability of healthcare providers to deliver high-quality palliative care services and meet the growing demand for such care.
6. Cultural and Social Stigma: There are cultural and social stigmas associated with serious illness, end-of-life care, and death in India, which can impact the acceptance and utilization of palliative care services. Fear, shame, and misconceptions about death and dying may prevent patients and their families from seeking palliative care support.

Living will

A living will, also known as an advance directive, is a legal document that allows individuals to specify their preferences regarding medical treatment and end-of-life care in the event that they become unable to communicate their wishes due to illness or incapacity. The concept of a living will is based on the principle of autonomy and the right of individuals to make decisions about their own healthcare.

In a living will, individuals can outline their preferences regarding the use of life-sustaining treatments such as CPR (cardiopulmonary resuscitation), mechanical ventilation, artificial nutrition and hydration, and other medical interventions. They can specify under what circumstances they would want these treatments to be administered or withheld, based on their values, beliefs, and quality-of-life considerations.

Living wills are legally binding documents when executed according to the laws of the jurisdiction in which they are created. They typically require witnesses or notarization to validate the document. Healthcare providers are obligated to honor the directives outlined in a living will to the extent permitted by law and in accordance with medical standards and ethical guidelines.

Living wills serve several important purposes:

1. Ensuring Autonomy: Living wills allow individuals to retain control over their medical care even if they are unable to communicate their wishes. By specifying their preferences in advance, individuals can ensure that their healthcare decisions align with their values and preferences.
2. Relieving Burden on Family: Living wills can help alleviate the burden on family members and loved ones who may otherwise be tasked with making difficult medical decisions on behalf of the individual. Having clear directives in a living will can reduce uncertainty and conflict among family members during times of crisis.
3. Promoting Dignity: Living wills enable individuals to express their desires regarding end-of-life care and the preservation of their dignity. By outlining their preferences for medical treatment, individuals can ensure that their wishes are respected and that they receive care that is consistent with their values and beliefs.
4. Facilitating Communication: Living wills encourage discussions about healthcare preferences and end-of-life care between individuals, their loved ones, and healthcare providers. These discussions can help clarify values, preferences, and expectations, fostering shared understanding and informed decision-making.

Overall, living wills are valuable tools for individuals to assert their autonomy and ensure that their healthcare preferences are respected, even in situations where they are unable to advocate for themselves. They provide peace of mind and guidance for both individuals and their loved ones during challenging times.

Evolution of living will in India

1. Legal Recognition: Living wills were formally recognized in India with the passage of the landmark judgment by the Supreme Court in the case of Common Cause v. Union of India in March 2018. In this judgment, the Supreme Court recognized the right to make an advance directive for medical treatment and upheld the legality of passive euthanasia (withdrawal or withholding of life-sustaining treatment) under certain circumstances.
2. Legislative Framework: Following the Supreme Court judgment, the Government of India introduced the “The Terminally Ill Patients (Protection of Patients and Medical Practitioners) Bill, 2016,” commonly known as the “Living Will Bill.” This bill proposed a legislative framework for the creation and implementation of living wills, outlining the procedures and safeguards for their validity and enforcement. However, the bill lapsed with the dissolution of the 16th Lok Sabha in 2019.
3. Subsequent Legal Developments: In subsequent years, various state governments and medical bodies in India have taken steps to provide guidance and frameworks for the implementation of living wills. For example, the Indian Council of Medical Research (ICMR) released guidelines on advance directives and end-of-life care in 2018, providing recommendations for healthcare providers and patients regarding the creation and utilization of living wills.

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Ankit Kumar

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