With advances in medical technology making it relatively easy to prolong life without necessarily ensuring its quality, we are often conflicted about the type of care we should give our loved ones to ensure that their final chapter plays out with dignity. The patients themselves are seldom in a position to express their wishes coherently, say Dhrithi Bhandari and Dr Asoke Mathew. That’s where the option of the Advance Medical Directive comes in – it was brought up by the Apex Court in connection with a plea for euthanasia in the Aruna Shanbaug case
Imagine navigating a stormy sea without a compass, relying solely on the whims of the wind to determine your course. This is what it feels like for families and healthcare providers when faced with making crucial end-of-life decisions without knowing the patient’s wishes. The Supreme Court of India, in its verdict in the Aruna Shanbaug case (2018, amended in 2023) recognised the legality of the Advance Medical Directive (AMD). This document provides clear guidance and ensures that an individual’s preferences are respected even when they can no longer voice them.
(On another plane, it is particularly poignant, in the light of the recent horrific Kolkata rape and murder case, to remember Aruna, the young nurse who was brutally raped in 1973 in a Mumbai hospital and left for dead, but continued to remain in a vegetative state for 41 long years. It’s sobering to realise that nothing has changed vis-à-vis women’s safety in 50 years and more.)
An AMD includes living wills and durable powers of attorney for healthcare; it represents our autonomy and commitment to living and dying on our terms. It provides clear instructions to designate trusted individuals to make decisions on our behalf, so as to ensure our voice is heard, values respected, and dignity maintained even when we are unable to articulate our desires.
The Supreme Court established legal provisions for AMDs, making them binding. It also answered questions about the implementation of these directives. The amendments in January 2023 simplified some provisions. Despite this, there remains a significant gap in societal awareness and execution.
care was handled with respect and dignity.
‘Please do something, simply ease their remaining days is a request medical professionals often have to handle from caregivers of patients undergoing futile treatment in situations of progressive illness where there is no chance of cure, thus compromising the quality of life of loved ones. In a world where medical technology can prolong life, the crucial question often is whether we should extend life or withhold treatment. An AMD empowers individuals to record such decisions themselves well before they lose the capacity to communicate their wishes. An AMD is a legal document that facilitates important conversations among patients, families and healthcare providers, ensuring everyone understands and acts on the patient’s desires.
AMDs grant individuals control over medical care, ensuring their end of-life treatment aligns with their personal desires. Patients can specify their choices for life-sustaining treatments, pain management and other care aspects, ensuring their quality of life is maintained according to their values. AMDs relieve family members of the emotional burden of making difficult decisions, prevent conflicts and reduce stress. An AMD serves as a roadmap for healthcare providers, ensuring patient preferences are respected, preventing unwanted interventions, and upholding the patient’s right to die with dignity.
The AMD also helps patients decide on pending matters before their death, including those relating to propriety, their belongings, and so on, avoiding confusion and conflict in the family later. Patients can review, alter or revoke their directives as long as they are of sound mind, or the person with power of attorney can do so if necessary.
For families, knowing they honoured their loved one’s wishes provides comfort and solace during the grieving process, ensuring the end-of-life care was handled with respect and dignity. Hospitals are the major domains where the public can gain access to AMDs. Here is what they can do:
1. Hold education and awareness campaigns: Hospitals can launch education campaigns through workshops, seminars and informational sessions, helping patients and families understand the importance of advance directives. All critically ill patients or those undergoing palliative care in hospitals need to be told about the AMD and their rights.
2. Offer legal assistance: Patients should be provided assistance to collaborate with legal professionals, ensuring they get the necessary guidance and support in drafting AMD documents.
3. Integrate AMDs into electronic medical records: This will make it easy for healthcare providers to verify and honour patients’ wishes during medical emergencies.
4. Provide training for healthcare providers: Hospitals should train their staff on the legal and ethical aspects of AMDs, and educate them in implementing the documents appropriately.
5. Facilitate conversations: Creating a supportive environment where patients and their families feel comfortable discussing end-of-life wishes is crucial. Hospitals can provide private spaces and trained facilitators to guide these sensitive conversations.
Thus, by prioritising patient autonomy, strengthening legal frameworks, and fostering compassionate care, patients’ wishes can be honoured at critical moments, allowing them to spend quality time with loved ones. Pallium India, a WHO Collaborating Centre, is one of the bodies which offer forms to help patients choose their care options (https://palliumindia.org/2024/06/living-will-and-attorney-authorisation).
(Dhrithi Bhandari is an intern at the Lakshmi Pain and Palliative Care Trust, Chennai, and a student at Symbiosis Law School, Pune; Dr Asoke Mathew is a Chennai-based palliative care consultant.)
from Webdoux