News from the Palatucci Advocacy Leadership Forum
A Campaign to Change End-of-Life Care in India
ARTICLE IN BRIEF
A graduate of the AAN Palatucci Advocacy Leadership Forum discusses his efforts to change and improve end-of-life care in India.
For most of his career as a consulting neurologist at PD Hinduja National Hospital in Mumbai, Roop Gursahani, MD, has specialized in treating epilepsy. But five years ago, he found himself in quite a different position — testifying before the Supreme Court in India, not about seizure disorders, but about end-of-life care.
The case involved a once young and vibrant nurse — Aruna Shanbaug — who had been in a persistent vegetative state 42 years after barely surviving a brutal strangulation and sexual assault in the hospital where she worked. In 2011, her caretakers fought to continue the care (she was nourished through a feeding tube) that was keeping her alive. The apex court asked Dr. Gursahani and two other doctors to assess her physical and mental state and confirm that she was in a persistent vegetative state — which they did.
Although the Supreme Court of India ruled for passive euthanasia in 2011, which meant that life support could be withdrawn from patients in a persistent vegetative state, it did not change the situation for Shanbaug. The court did not grant permission to remove her feeding tube since both her doctors and caregivers were in agreement about continuing care. She died naturally of pneumonia in May 2015.
“The laws in India are archaic,” and typically families care for their loved ones at home, Dr. Gursahani told Neurology Today. “In a country where talking about one's death with your loved ones is often considered a bad omen or taboo, it is an uphill task for doctors and caregivers to discuss end-of-life care with patients and their families,” he added.
“For many people, the end of life can be extremely painful,” he said. “Palliative care doesn't exist in the homes or in hospitals. Without legislation in place, doctors can't withdraw care, even if a patient wants to die. At issue is how we intelligently and compassionately care for the dying.”
This got the neurologist thinking: What if he could rally the medical troops and push to legislate a more humane end-of-life care for the 1.2 billion people of India?
Dr. Gursahani and a few like-minded colleagues have been pushing to legislate a more humane end-of-life care for the 1.2 billion people of India. “For a moment, forget that I am a doctor. I am 56-years-old and like everybody else I will die someday. But I want my death to be under my control as much as possible, and I want to do it right. I do not want the laws of my country to get in my way,” says Dr. Gursahani.
The plan was to build a coalition of medical organizations to draft legislation and move it through Parliament. Dr. Gursahani began speaking to intensive care doctors and palliative care specialists all over the world. He wanted to understand the issues. He set out in his own country, knocking on doors, emailing, making calls, and before he knew it he had a pretty strong team of neurologists, intensivists, and palliative care specialists. They branched out to journalists, lawyers, and legislators, and found a legal firm to work on the legislation pro-bono. They are now on their way to drafting what would be India's first self-determination act.
Dr. Gursahani is hoping that the self-determination legislation will give patients decision-making rights that would enable them to have advanced health care directives that would be honored in hospitals. In keeping with their wishes, they would have the right to accept or refuse medical treatments.
The draft legislation will include language on defining death — a need, he said, reinforced, as well, by his own experience with a patient he had been caring for — a young man who had suffered massive brain damage in a motorcycle accident. Tests had confirmed that he was brain dead. But in India death is called when the heart beat stops. “We have families whose loved ones are brain dead and want to donate organs but doctors are helpless. Often, the patient's body rots on the ventilator till the heart stops. By then, most of the organs are too damaged to transplant. We need a law that recognizes this kind of a situation.”
Dr. Gursahani said that when he first spoke about end-of-life care at the AAN Palatucci Advocacy Leadership Forum, it was more of a theoretical exercise. “I never thought that this was something that I would spend my career pursuing,” he said. “Today, this dominates my thinking. When I begin talking to my sick patients or their families they say: ‘Doctor, no one has ever spoken to us about these things [palliative care to reduce pain and suffering] before.’”
“By the time there is talk about withdrawing care, my patients are hardly in a position to have these discussions,” he added. “Families are often conflicted because they don't know if what they are thinking is right. Someone has to talk to them.”
“Doctors are afraid to act without the government taking a stand on behalf of a patient's right to die with dignity. As long as we draft reasonable legislation and guide the discussion, we have a good chance of getting it passed. I don't think that people will object to it. The fact is that it has just never been done before in India.”
He knows it will not be easy. The Law Commission of India has already turned down two draft bills on advanced care directives. Dr. Gursahani said that the commission feels such a provision would be subject to misuse under Indian conditions. He and his colleagues are continuously rewriting to guide the legislation through.
Meanwhile, Dr. Gursahani and his colleagues — RK Mani, a critical care specialist and chief executive officer at Nayati Healthcare and Research, and Nagesh Simha, MD, a palliative care specialist and medical director of Karunashraya, a hospice — have taken their case to the court of public opinion. In an editorial published in a daily newspaper in Mumbai, they wrote: “When we restore the individual rights of choice and privacy, and extend protection to the honest caregiver, we as a people will have taken a historic leap forward.”
Roop Gursahani, MD, is one of 27 neurologists from around the world who participated in the 2015 AAN's Palatucci Advocacy Leadership Forum (PALF), a program designed specifically to help neurologists promote health-changing advocacy on behalf of their patients on a local, state, and national level. Dr. Gursahani applied for a PALF grant and underwent training to help him write and promote legislation to improve end-of-life care for patients. Look for more stories about the work of these PALF graduates in upcoming issues of Neurology Today. For more information about the PALF program, visit http://bit.ly/AAN-PALF.