[Indepth] Living Wills in India: Procedure & Challenges
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In recent developments, the Maharashtra government has taken significant steps to facilitate the process of creating and safeguarding living wills, appointing custodians across local bodies to ensure the documents’ safekeeping. This move, aimed at upholding the right to die with dignity, follows the Supreme Court’s guidelines on passive euthanasia and addresses the challenges in implementing living wills. Dr. Nikhil Datar’s submission of his living will in Mumbai marks a pivotal moment in this ongoing effort.
Introduction to Living Wills
- Definition and purpose of a living will:
- A living will, also known as an advance directive, is a legal document.
- It allows individuals to outline their preferences for medical treatment in situations where they are unable to communicate their decisions.
- The document can specify desires concerning life-sustaining treatments such as resuscitation, mechanical ventilation, and artificial nutrition.
- The importance of living wills in healthcare decision-making:
- Living wills play a crucial role in upholding patient autonomy by ensuring that healthcare providers and family members are aware of the patient’s end-of-life care preferences.
- They provide a clear directive to medical professionals, which can help prevent unnecessary medical interventions and reduce the emotional burden on family members during critical health situations.
- Overview of living wills in the context of Indian law and healthcare:
- In India, the concept of living wills gained legal recognition following the landmark judgment in the case of Common Cause v Union of India.
- The Supreme Court of India acknowledged the right to die with dignity as a fundamental right and permitted adults with decision-making capacity to execute advance medical directives or living wills.
- The judgment also laid down guidelines for the implementation of advance medical directives and the withholding and withdrawal of life-sustaining treatment.
- Despite legal recognition, there are challenges in the practical implementation of living wills in India, such as a lack of awareness among the public and healthcare professionals, and the need for a streamlined process for creating and executing these documents.
Legal Framework for Living Wills in India
- Historical perspective: The evolution of living wills in Indian jurisprudence
- The concept of living wills or advance medical directives gained legal recognition in India primarily through judicial activism, aligning with global practices.
- The Supreme Court of India played a pivotal role in acknowledging and setting the groundwork for the acceptance of living wills within the Indian legal system.
- The landmark judgment: Common Cause (A regd. Society) v. Union of India and its implications
- On March 9, 2018, the Supreme Court in the case of Common Cause v. Union of India upheld the legality of passive euthanasia, thereby recognizing the right to die with dignity as a fundamental right under Article 21 of the Constitution.
- This judgment also permitted adults with decision-making capacity to execute advance medical directives or living wills, laying down guidelines for the same.
- The court differentiated between active and passive euthanasia, allowing the latter under certain conditions and emphasizing the importance of patient autonomy and self-determination.
- Current legal status and recognition of living wills in India
- Following the 2018 judgment, living wills have been legally recognized, allowing individuals to make decisions regarding their end-of-life care in advance.
- The Supreme Court has since worked on simplifying the guidelines for executing living wills to make the process more accessible and less cumbersome for individuals.
- Despite the legal recognition, the implementation of living wills faces challenges, including a lack of awareness among the public and healthcare professionals, and the need for further legislative support to streamline the process.
Components of a Living Will
- Essential elements of a living will:
- A living will, often recognized as an advance directive, is a critical document that outlines a person’s healthcare preferences in scenarios where they are unable to communicate their decisions.
- It should clearly state the individual’s name, date of birth, and other identifying information to ensure there’s no confusion about whom the living will pertains to.
- The document must be legally signed and witnessed or notarized, adhering to the specific legal requirements of the jurisdiction in which it is executed.
- Specific medical directives typically included:
- Decisions regarding the use of life-sustaining treatments, such as mechanical ventilation, artificial nutrition and hydration, and CPR (cardiopulmonary resuscitation), are central to most living wills.
- Preferences about pain management and palliative care, ensuring comfort and dignity in end-of-life care, are also commonly addressed.
- Instructions may also cover the use of antibiotics or antiviral medications in terminal conditions, specifying when these should or should not be used to prolong life.
- The role of individual autonomy and patient rights in a living will:
- A living will is fundamentally about respecting an individual’s autonomy—their right to make decisions about their own body and medical treatment based on their values, beliefs, and preferences.
- It serves as a legal tool to ensure that healthcare providers and family members honor the patient’s healthcare preferences, even when the patient is no longer able to communicate those preferences themselves.
- By providing clear instructions on medical treatment preferences, a living will helps to prevent potential conflicts among family members and between family members and healthcare providers over care decisions.
The Procedure for Creating a Living Will in India
- Legal age and capacity requirements for executing a living will:
- The individual creating a living will, referred to as the Executor, must be an adult of at least 18 years of age and possess sound mental health.
- The Executor must be capable of making informed decisions and understanding the implications of the living will at the time of its creation.
- Designation of a healthcare proxy or guardian:
- The living will should specify a Guardian or Healthcare Proxy—a trusted individual who will make medical decisions on behalf of the Executor if they become incapable of doing so.
- This designated person is often a family member or close relative, chosen to ensure that the Executor’s healthcare preferences are honored.
- Witnessing and notarization: Ensuring the validity of the document:
- The living will must be signed by the Executor in the presence of two independent witnesses.
- It should then be countersigned by a notary or gazetted officer who will verify that the document has been executed without any coercion and to their satisfaction.
- Registration and storage of the living will: Digital and physical copies:
- While the registration of a living will is not mandatory in India, it provides an added layer of legal validity and security.
- The living will can be stored in digital format and registered with the jurisdictional Judicial Magistrate of First Class (JMFC) or the local government officer.
- Copies of the living will should be distributed to the designated Guardian, family members, and possibly the family physician for ease of access when needed.
Challenges and Considerations
- Practical challenges in the implementation of living wills in India:
- Despite the legal recognition of living wills since 2018, their implementation remains sluggish across most parts of India, with officials hesitant to proceed without explicit directives from state governments.
- The Supreme Court’s guidelines necessitate the certification of decisions on withholding or withdrawing treatment by a primary medical board and a secondary board, which includes a doctor nominated by the chief medical officer. This requirement has made it difficult for hospitals to form secondary medical boards, complicating the execution of living wills.
- Maharashtra has made progress by appointing 417 custodians across the state to oversee living wills, but other regions lag behind, with local governments generally not designating custodians for living wills.
- The National Health Authority has yet to establish a protocol for authenticating living wills through digital health records, further complicating their implementation.
- Ethical dilemmas and the role of medical practitioners:
- The implementation of living wills can lead to ethical dilemmas for both the patient’s family and healthcare professionals, as decisions about end-of-life care often involve complex considerations of patient autonomy, quality of life, and the obligations of physicians.
- Physicians must ensure that the instructions in a living will are unambiguous and must discuss any ethical difficulties they foresee in carrying out those instructions, balancing respect for patient autonomy with professional judgment and ethical standards.
- Addressing skepticism and misconceptions about living wills:
- There is a skepticism among officials and the general public regarding the topics of death, mortality, and end-of-life care, which are often seen as unfamiliar and uncomfortable subjects. This skepticism can hinder the widespread acceptance and implementation of living wills.
- Misconceptions about living wills, such as their purpose and the process for their creation and execution, can lead to reluctance among individuals to create such directives. Clear, accurate information and education are essential to overcoming these barriers and encouraging more people to consider making living wills.
Advantages of Having a Living Will
- Make life easier for one’s family:
- A living will can significantly reduce stress, confusion, and tension among family members during a difficult time by clearly outlining one’s healthcare preferences.
- It eliminates the burden on loved ones to make critical healthcare decisions on one’s behalf, ensuring peace of mind.
- Delegate decision-making:
- Without a living will, the state may appoint someone who is unfamiliar with one’s healthcare wishes to make decisions.
- A living will allows one to appoint a trusted individual as one’s healthcare proxy, ensuring that decisions made are in line with one’s preferences.
- Get the care one wants:
- Having a living will means one can avoid receiving unwanted medical treatments and only receive care that aligns with one’s values and wishes.
- It enables one to work closely with doctors to develop a medical plan that one is comfortable with, ensuring healthcare is managed according to one’s preferences.
- Avoid legal challenges:
- A well-drafted living will can reduce the risk of legal disputes among family members, as it clearly communicates one’s healthcare decisions.
- This legal document serves as a binding expression of one’s wishes, making it less likely for relatives to contest one’s healthcare choices.
- Ensure one’s voice is heard:
- Living wills ensure that one’s healthcare preferences are respected and followed, even when one is unable to communicate them personally.
- It allows one to maintain control over medical treatment by specifying in advance what interventions one does or does not want.
Steps to Create a Living Will in India
- Reflecting on personal values and end-of-life care preferences:
- Individuals should contemplate their values, such as dignity, pain management, and their stance on prolonging life artificially.
- Consideration of scenarios like terminal conditions or persistent vegetative states is crucial in determining one’s wishes regarding end-of-life care.
- Consulting with healthcare professionals and legal experts:
- Engaging in discussions with healthcare providers to understand medical implications and treatment options for various end-of-life scenarios.
- Seeking advice from legal experts or specialized services to ensure the living will is compliant with legal standards and reflects the individual’s true intentions.
- Completing and formalizing the living will document:
- The living will must be written and signed by the individual, known as the Executor, in the presence of two independent witnesses and countersigned by a notary or gazetted officer to ensure its validity.
- The Executor must also appoint a Guardian or Healthcare Proxy to make medical decisions on their behalf, based on the outlined wishes, should they become incapable of doing so.
- Regular updates and communication with family and healthcare providers:
- It is advisable to review and update the living will periodically to reflect any changes in the individual’s preferences or values.
- Informing family members and the individual’s healthcare proxy about the existence and content of the living will can prevent confusion and ensure that the individual’s wishes are respected.
Conclusion
Living wills serve as a crucial tool for ensuring that an individual’s healthcare preferences are respected and adhered to, even when they are unable to communicate their wishes. By reflecting on personal values, consulting with professionals, and formalizing their desires through a living will, individuals can safeguard their autonomy and reduce the burden on loved ones. Regular updates and open communication further ensure that these directives remain aligned with the individual’s evolving preferences and circumstances.
Practice Question
Evaluate the impact of the Supreme Court’s judgment on passive euthanasia and living wills on the autonomy of patients in India. (250 words)
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