Living Will, Living Well – How Taking Control Of End Of Life Decisions Can Lead To Greater Peace Of Mind And Family Harmony

Abstract

Living-will is a written statement depicting individuals’ directions regarding future medical treatment in situations in which they are no longer able to express informed consent. Based on the secondary literature and substantiated with empirical findings, it carves out the need for death preparedness in general and endorsing living-will in particular. This research article explores the concept of living wills, also known as advance directives, focusing on the rationale behind their registration and recent developments exemplified by Justice MS      Sonak’s registration in Goa, India. Living wills serve as critical legal instruments allowing individuals to specify their medical preferences regarding end-of-life care in advance of incapacitation. The study investigates the significance of registering these documents, emphasizing the benefits of clarity and legal enforceability in healthcare decision-making. Justice Ms. Sonak’s initiative highlights the practical implications and societal acceptance of advance directives, underscoring their role in promoting autonomy and dignity in medical treatment choices.

Introduction

In contemporary medical ethics and practice, the concept of a living will stands as a pivotal testament to individual autonomy in healthcare decision-making, particularly during critical moments such as end-of-life care. A living will, often referred to as an advance directive, represents a legally binding document that articulates an individual’s preferences regarding medical treatment in situations where they are unable to communicate their wishes due to incapacitation. This document not only serves to uphold the patient’s autonomy but also provides crucial guidance to healthcare providers and family members faced with difficult decisions regarding treatment options. The importance of a living will is underscored by its role in ensuring that patient’ wishes are respected, thus promoting dignity and reducing potential conflicts among family members and healthcare professionals. Moreover, it empowers individuals to maintain control over their medical care even in situations where they are unable to actively participate in decision-making. This becomes especially relevant in discussions surrounding end-of-life care, where sensitive and complex choices must be made concerning life-sustaining treatments and quality of life considerations.

Understanding A Will

The concept of will is a complex and multifaceted one, encompassing various aspects of individual autonomy, consent, and decision-making. In the context of data privacy and cross-border data transfers, will refers to the intention, consent, and autonomy of individuals in making decisions about their personal data. It involves the capacity to make informed decisions, free from coercion or manipulation, and to exercise control over one’s personal information. The exercise of will is essential for individuals to maintain control over their data and to ensure that their privacy is respected. However, the manifestation of will in the digital age is often fraught with challenges, including the complexity of data collection and processing practices, the lack of transparency and accountability, and the limited options for user control. Understanding the concept of will and its implications for data privacy and cross-border data transfers is crucial for developing effective solutions that prioritize individual autonomy and agency.

What is a Living Will?

A living will outline specific instructions regarding the types of medical treatment an individual wishes to receive or avoid in situations where they are no longer able to make decisions due to illness or incapacity. This document typically covers scenarios such as life-sustaining treatments (e.g., artificial respiration, tube feeding) and end-of-life care preferences (e.g., palliative care vs. aggressive interventions).

Recent developments have brought renewed attention to the significance of living wills in healthcare practices worldwide. Notably, the recent news of Justice MS Sonak becoming the first person in Goa to register a living will highlight the growing recognition and acceptance of this legal instrument within diverse cultural and legal contexts. Such instances not only validate the utility of living wills in safeguarding personal autonomy but also encourage broader adoption and discussion within communities and healthcare systems. This article explores the concept of living wills in-depth, examining their ethical foundations, legal implications, and practical applications in medical decision-making and end-of-life care. By delving into these aspects, we aim to provide a comprehensive understanding of how living wills contribute to patient-centred care and ensure that individual preferences are honoured with dignity and respect.

Purpose And Significance In Healthcare And Legal Contexts

The primary purpose of a living will is to ensure that an individual’s preferences for medical care are respected, even when they are no longer capable of communicating those preferences. By clearly stating their wishes in advance, individuals maintain control over their healthcare decisions and relieve family members and healthcare providers from the burden of making difficult choices without guidance. In healthcare contexts, a living will serves as a crucial tool for promoting patient autonomy and dignity. It allows healthcare providers to provide care that aligns with the patient’s values and beliefs, thereby enhancing patient-centred care and reducing the potential for disputes or conflicts among family members regarding treatment decisions.

From a legal perspective, a living will carries significant weight as a legally binding document when drafted and executed according to local laws and regulations. It provides clarity and certainty for healthcare providers and ensures that the individual’s wishes are upheld in accordance with their expressed preferences. Moreover, the significance of living wills extends beyond individual cases to broader ethical considerations in medical practice. They contribute to discussions on end-of-life care, informed consent, and the ethical principles of beneficence and non-maleficence, guiding healthcare professionals in delivering compassionate and appropriate care tailored to the patient’s wishes. Understanding the concept of a living will involve recognizing its role in empowering individuals to make informed decisions about their healthcare, even during circumstances of incapacity. This document not only safeguards autonomy but also fosters ethical and compassionate healthcare practices that honour the values and preferences of each individual.

Legal Framework

In recent years, India has witnessed significant legal developments regarding the recognition and regulation of living wills, also known as advance directives. This section explores the relevant legal provisions, guidelines, and the landmark Supreme Court judgement that shaped the landscape of living wills and end-of-life care decisions in the country.

Relevant Legal Provisions and Guidelines:

1. The Constitution of India article-21  – The right to life and personal liberty, interpreted to include the right to live with dignity. This forms the basis for individual autonomy in healthcare decisions, including the right to refuse treatment.
2. Indian Succession Act, 1925: Section 57 – Provides for the legality of wills, including provisions relevant to testamentary dispositions and the legality of bequests.
3. The Medical Treatment of Terminally Ill Patients (Protection of Patients and Medical Practitioners) Act, 2016: This Act addresses issues related to the withdrawal or withholding of medical treatment to terminally ill patients, providing some framework for end-of-life decisions.
4. The Supreme Court’s Directive in Aruna Ramchandra Shanbaug v. Union of India (2011): This case emphasized the right to die with dignity and laid the groundwork for subsequent legal developments regarding passive euthanasia and advance directives.

Overview of The Supreme Court’s Judgement on Passive Euthanasia and Living Wills

The landmark judgment of the Supreme Court in Common Cause v. Union of India (2018) marked a significant milestone in the legal recognition and regulation of living wills in India. The case was prompted by a petition seeking clarification on the legality of passive euthanasia and the validity of advance directives.

Background of the Case:

The petitioners argued for the recognition of the right to die with dignity, asserting that individuals should have the autonomy to make decisions about the withdrawal of life-sustaining treatment through advance directives.

 Key Arguments and Court’s Ruling:

The Supreme Court recognized the right to advance directives and held that individuals have the right to refuse medical treatment, including life-sustaining treatment, if they are incapable of making decisions in the future. The judgement provided guidelines for the implementation of advance directives, emphasising the importance of clarity, voluntariness, and procedural safeguards.

Impact and Implications

The judgment provided legal certainty and clarity on the validity and implementation of living wills, ensuring that healthcare providers and family members can respect the wishes of individuals regarding end-of-life care. It set forth procedures for the creation, registration, and execution of advance directives, outlining safeguards to prevent misuse and ensure that decisions are based on informed consent.

Subsequent Developments

Following the judgment, there have been efforts to educate healthcare professionals and the public about the legal framework of living wills, aiming to enhance awareness and implementation across the healthcare system.

The legal framework surrounding living wills in India has evolved significantly, guided by constitutional principles, legislative provisions, and landmark judicial decisions. The Supreme Court’s judgment in Common Cause has played a pivotal role in affirming the right to die with dignity and establishing clear guidelines for the implementation of advance directives. As India continues to navigate ethical and legal complexities in end-of-life care, the recognition of living wills stands as a crucial step towards upholding individual autonomy and ensuring compassionate healthcare practices.

Why Register a Living Will?

In contemporary healthcare systems, registering a living will, also known as an advance directive, holds significant importance for individuals seeking to maintain control over their medical treatment decisions, alleviate burdens on family members, and ensure legal protection.

Autonomy and Control

One of the primary reasons for registering a living will is to assert autonomy and maintain control over one’s medical treatment decisions, especially in situations where individuals may become incapacitated. By outlining preferences for medical interventions, including end-of-life care, in advance, individuals can ensure that their wishes are respected and followed, even when they are unable to communicate or make decisions.

1. Importance of Having Control Over Medical Treatment Decisions: Registering a living will empower individuals to specify their preferences regarding life-sustaining treatments, palliative care options, and other critical medical decisions. This proactive approach enables them to maintain a sense of control over their healthcare journey.
2. Ensuring One’s Wishes Are Respected Even When Incapacitated: A living will serves as a legally binding document that provides clear instructions to healthcare providers and family members, ensuring that decisions align with the individual’s values and preferences.

Reducing Family Burden

Another compelling reason to register a living will is to minimise the emotional and decision-making burden placed on family members during critical healthcare situations. Uncertainty and disagreement among family members regarding medical treatment options can be distressing and may lead to prolonged deliberations.

1. Minimizing the Emotional and Decision-Making Burden on Family Members: By documenting healthcare preferences in advance, individuals relieve their loved ones of the responsibility of making difficult decisions under duress. This can foster family unity and reduce potential conflicts related to medical care.
2. Providing Clear Directives to Healthcare Providers and Loved Ones: A registered living will offers clarity to healthcare providers, ensuring they understand and adhere to the individual’s wishes. It also provides peace of mind to family members, who can proceed with confidence knowing they are honouring the individual’s predetermined choices.

Legal Protection

Registering a living will offers legal protection by safeguarding individuals from unwanted medical interventions and ensuring compliance with established legal and medical guidelines. This aspect is crucial in maintaining the integrity of the individual’s healthcare preferences and decisions.

1. Protecting Oneself from Unwanted Medical Interventions: A registered living will legally obligates healthcare providers to respect the individual’s wishes, thereby preventing unwanted medical treatments that may contradict their beliefs or quality-of-life considerations.
2. Ensuring Compliance with Legal and Medical Guidelines: By registering a living will, individuals align their healthcare decisions with existing legal frameworks and medical ethics, ensuring that their directives are implemented within the bounds of established guidelines and regulations.

How to Register a living will?

Registering a living will, also known as an advance directive, involves careful consideration of medical treatment preferences, adherence to legal requirements, and navigating the registration process effectively. This section provides a comprehensive guide to drafting a living will, meeting legal formalities, and completing the registration process in India.

Drafting a Living Will

Drafting a living will involves articulating specific preferences for medical treatment and end-of-life care decisions. Key components to include in the document are:

1. Identification and Contact Information: Clearly state full name, address, and contact details.
2. Statement of Intent: Express the intention to create an advance directive regarding medical treatment preferences.
3. Medical Treatment Preferences: Specify detailed instructions regarding:
4. Life-sustaining treatments (e.g., artificial ventilation, tube feeding).
5. Palliative care options (e.g., pain management, comfort measures).
6. Circumstances under which medical treatment should be withheld or withdrawn.
7. Appointment of Healthcare Proxy: Optionally designate a trusted individual (health care proxy) to make medical decisions on your behalf if you are unable to communicate.
8. Witness and Attestation: Include provisions for witnesses (usually two witnesses) who must attest that the document reflects your wishes and that you are of sound mind while executing the living will.

Legal Requirements

To ensure the validity and enforceability of a living will in India, certain legal formalities must be observed:^[1]

1. Necessary Legal Formalities and Documentation:
2. The document must be signed by the individual making the living will and witnessed by at least two persons.
3. These witnesses should not be family members or beneficiaries under the will.
4. The document should ideally be notarized to add an additional layer of authentication.
5. Witness and Attestation Requirements:
6. Witnesses must attest that the person making the living will is of sound mind and is voluntarily making the decisions outlined in the document.
7. The witnesses’ signatures should be accompanied by their full names, addresses, and contact details.

Registration Process

Registering a living will involves submitting the document to the appropriate authorities for official recognition and storage:^[2]

1. Step-by-Step Guide to Registering a Living Will in India:
2. Obtain the prescribed form for registering a living will from the local jurisdiction or district office.
3. Complete the form with accurate personal details and attach the drafted living will.
4. Submit the form along with any required fees to the designated authority, which may include a judicial magistrate or other  officer.
5. Involvement of Judicial Magistrates and Healthcare Professionals:
6. Judicial magistrates or specified officers oversee the registration process to ensure compliance with legal standards.
7. Healthcare professionals may be consulted to verify medical treatment preferences and ensure clarity in the document’s instructions.
8. Specific Procedures in Different States:
9. Madhya Pradesh: The registration process generally follows state-specific guidelines under the Madhya Pradesh Registration of Living Will Rules, ensuring adherence to local laws and regulations.
10. Delhi and Rajasthan: Procedures may vary slightly, but generally involve submission to district authorities or specified offices with requisite documentation and fees.

By following these steps and adhering to legal requirements, individuals can effectively register a living will in India, ensuring that their medical treatment preferences are honored and legally recognized in times of incapacity. This proactive approach not only empowers individuals but also provides clarity and peace of mind to family members and healthcare providers tasked with implementing end-of-life care decisions.

Nuances And Considerations

Living wills, though pivotal in empowering individuals to make informed healthcare decisions, present various legal, practical, and judicial challenges in their implementation and enforcement in India.

Legal and Practical Challenges

1. Potential Legal Challenges and Disputes:
2. Interpretation and Validity: Disputes may arise concerning the interpretation and validity of living wills, particularly regarding the scope of treatment preferences and adherence to legal formalities.
3. Family Disputes: Conflicts among family members regarding the authenticity or applicability of the living will can complicate decision-making processes, potentially leading to legal interventions.
4. Legal Recognition: Ensuring uniform recognition and enforcement across different states and jurisdictions remains a challenge due to varying interpretations and local practices.
5. Practical Difficulties in Implementation and Enforcement:
6. Awareness and Access: Limited awareness among the public and healthcare professionals about the existence and importance of living wills can hinder their effective implementation.
7. Documentation and Storage: Challenges in securely storing and accessing living wills during critical healthcare decisions may delay timely and accurate adherence to an individual’s preferences.
8. Emergency Situations: In emergency situations, healthcare providers may face dilemmas regarding the immediate applicability and implementation of advance directives without clear guidelines or prior knowledge.

Judicial Precedents

Understanding key Indian case laws and judicial interpretations related to living wills and passive euthanasia provides insights into evolving legal perspectives and challenges:

1. Gian Kaur v. State of Punjab (1996) – Supreme Court of India: While not post-2015, this case is foundational in discussing euthanasia laws in India, exploring the scope of the right to life and the legality of euthanasia.
2. Nikesh Tarachand Shah v. Union of India (2018) – Supreme Court of India: This case reiterated the Supreme Court’s stance on passive euthanasia and living wills, emphasising the importance of individual autonomy and the right to refuse medical treatment.
3. Aruna Ramchandra Shanbaug v. Union of India (2011) – Supreme Court of India: Although not specifically about living wills, this case influenced discussions on euthanasia and patient rights in India, setting a precedent for subsequent legal developments.
4. Common Cause (A Regd. Society) v. Union of India (2014) – Supreme Court of India: This case highlighted issues related to euthanasia and patient rights, laying the groundwork for the more comprehensive judgement in 2018.
5. Pinki Devi v. State of Jharkhand (2017) – Jharkhand High Court: This judgement addressed issues related to end-of-life care and the role of advance directives in healthcare decision-making, reflecting regional perspectives on the matter.
6. Samira Kohli v. Dr. Prabha Manchanda & Anr. (2008) – Delhi High Court: Although not post-2015, this case discussed medical negligence and the right to healthcare, touching on aspects relevant to patient autonomy and treatment decisions.

These judgments and precedents illustrate the evolving legal landscape and judicial interpretations regarding living wills and passive euthanasia in India. They reflect the courts’ efforts to balance individual autonomy with ethical and legal considerations in end-of-life care, paving the way for clearer guidelines and enhanced legal protections.

Conclusion

The landscape of living wills in India has evolved significantly, driven by legal reforms, landmark judicial decisions, and societal shifts towards patient autonomy and dignity in healthcare decision-making. The findings and current position of law on this issue reflect a progressive stance aimed at balancing individual rights with ethical and practical considerations. As of 2024, the legal framework surrounding living wills in India is anchored by the Supreme Court’s landmark judgement in Common Cause v. Union of India (2018). This judgement unequivocally affirmed the right of individuals to create advance directives, outlining preferences for medical treatment and end-of-life care. Through the analysis of legal provisions, practical challenges, and judicial precedents, it becomes evident that the introduction and recognition of living wills serve to empower individuals in asserting control over their medical treatment decisions. By registering a living will, individuals not only safeguard their autonomy but also alleviate burdens on family members and healthcare providers, ensuring clarity and peace of mind during critical healthcare situations. Looking ahead, there is a need for continued dialogue and collaboration among stakeholders—including healthcare professionals, legal experts, policymakers, and the public—to enhance awareness, streamline procedures, and address emerging ethical and legal complexities. In conclusion, the recognition of living wills in India represents a significant advancement towards patient empowerment and rights in healthcare decision-making. By embracing the principles of autonomy, dignity, and respect, the legal framework continues to evolve, contributing to a more compassionate and patient-centred healthcare system.

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This article is authored by Ms. Roshini Thulasi, student at Dr. Ambedkar Government Law College, Chennai

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^[1]King,Stubb & Kasiva, Wills- In India and Essential Elements and legal requirements https://www.legal500.com/

^[2]Willjini, Step-by-Step Guid,https://www.willjini.com/blog/