ENSURING PROTECTION OF DIGNITY AT THE END OF LIFE
Working with individuals, hospitals and pediatric specialists to practically implement advance medical directives and advocate for a model end of life care law
Despite the Supreme Court recognising advance medical directives – legal instruments that allow persons to refuse life sustaining treatment at a time in the future when they might lose decision-making capacity – as legally valid documents in 2018, there have been very few people who have been able to get their advance medical directives executed.
This is because the procedure prescribed by the Supreme Court is onerous and also because the authorities identified under the judgment to execute these directives (Judicial Magistrates of the First Class) are not aware of their obligations under the judgment.
Building on its intervention in the Supreme Court petition which led to the 2018 judgment, Vidhi has continued to deepen its engagement in the field of end of life care by providing practical solutions to help patients realise their rights to autonomy and dignity, and to enable doctors and hospitals to practise medicine ethically.
In particular, Vidhi has:
- Assisted in the actual execution of an advance medical directive by a young student and helped set a precedent for their execution by others.
- Helped the Manipal Group of Hospitals develop their protocol when families request a discharge against medical advice.
- Given its inputs to the Bai Jerbai Wadia Children's Hospital, Mumbai about a paediatric end of life care policy.
Execution of advance medical directives
Vidhi helped a young engineering student from Ghaziabad, who feels passionately about this issue, execute his advance medical directive. Dhvani Mehta, who leads Vidhi's team on health research, assisted the student in making an administrative application before the District Judge, Ghaziabad, asking him to designate a Judicial Magistrate before whom the advance medical directive could be executed. The judge passed an order accordingly, and the student was able to use this order to execute his advance medical directive. Other persons wishing to execute their advance medical directives can now adopt the same route.
'Living will is extremely important for me as it effectively prevents me from any kind of long and intolerable suffering. I didn't know how to make a living will, that's why it took 10-12 visits to court. I am among the very few people who successfully executed a living will in India. I received a great amount of help from Dhvani Mehta of the Vidhi Centre for Legal Policy. I am greatly thankful to her for helping me out.' — Keshav Anand,
Discharge against medical advice
In India, families often request that medical treatment be stopped abruptly. This could be because of financial constraints, a lack of trust in the treating team, or a desire that the patient receive end of life care at home. This poses a dilemma for doctors, who might be torn between their duty to act in the best interests of the patient and to continue to provide care, on the one hand, and to respect the autonomy of patients and their families to refuse medical treatment, on the other.
The sub-optimal solution that is currently devised is to discharge such patients against medical advice. In such cases, not only is life-sustaining medical treatment withdrawn, but comfort care is also taken away, leaving patients to die without appropriate medical management, and causing distress to their family members or friends. Although hospitals use 'discharge against medical advice' as a tool to avoid legal liability, it often ends up leaving them vulnerable to more litigation from relatives who are inevitably upset about the ultimate outcome of such discharge.
To address this, the Kasturba Hospital, Manipal, initiated the process of framing a more sensitive policy that would help their doctors deal with instances where demands are made to end medical treatment. Vidhi gave its legal inputs to the hospital on developing this protocol to ensure that its doctors could act in an ethically responsible manner without fear of legal liability.
'The Kasturba Medical College and the Manipal Academy of Higher Education are very grateful for the contribution of the Vidhi Centre for Legal Policy towards the development of procedural guidance on limiting life-sustaining treatment.' — Dr Naveen Salins,
PROFESSOR AND HEAD, DEPARTMENT OF PALLIATIVE MEDICINE AND SUPPORTIVE CARE, KASTURBA MEDICAL COLLEGE, MANIPAL ACADEMY OF HIGHER EDUCATION
End of life care for children
The question of end of life care in children is a complex one that must be handled very sensitively. The Supreme Court's judgment in Common Cause v Union of India, which laid down the law on withholding and withdrawing life-sustaining treatment, does not provide any specific guidance related to children. However, there are pioneering hospitals like the Bai Jerbai Wadia Children's Hospital in Mumbai that are taking the progressive step of developing a humane and ethically responsible end of life care policy for their pediatric patients.
Vidhi has had several rounds of conversation with specialists at this hospital to understand their requirements and concerns and to advise them on their end of life care policy. Policies like this will have a significant impact on pediatric intensive care and will enable medical professionals to have difficult conversations with families in a
By assisting a young student execute his advance medical directive, by helping the Manipal Group of Hospitals develop their protocol to handle cases where families request a discharge against medical advice, and by giving its inputs to the Bai Jerbai Wadia Children's Hospital, Mumbai about a pediatric end of life care policy, Vidhi is ensuring that protecting dignity at end of life is becoming a lived reality in India.