Published on: October 24, 2024

Anjali Krishnan R., Officer – Projects and Data, Pallium India, writes:

The Ministry of Health and Family Welfare (MOHFW) has recently opened public comments on draft guidelines for withdrawing life support for terminally ill patients. These guidelines emphasise patient autonomy and the right to refuse life-sustaining treatment (LST),  a vital aspect of honouring individual choices at the end of life. Understanding the significance of this issue, I’ve decided to contribute by sharing my input on these guidelines, looking through a public health lens to consider the broader impacts on both patients and healthcare systems.

To further this dialogue, I had an enlightening conversation with Dr. Ravi Prasad Varma (RPV), a Professor at the Achutha Menon Centre for Health Science and Studies (AMCHSS), Sree Chitra Tirunal Institute of Medical Sciences and Technology (SCTIMST) in Thiruvananthapuram, Kerala. Dr. RPV suggested conducting a discussion on draft guidelines for Master of Public Health (MPH) students, which is a cohort of students with multidisciplinary background across India. Along with that we decided to introduce the concept of Death Café in AMCHSS among Public health students.

In this context, AMCHSS, SCTIMST, in collaboration with Pallium India, conducted a discussion on 16th October 2024 at the seminar hall in AMCHSS. The event was organised in connection with World Hospice and Palliative Care Day (WHPCD) 2024, which fell on October 12. The  discussion was facilitated by Dr. RPV and commenced with the introduction of some books to the MPH students.

They were tasked with reading selected passages from a few of those, namely Man’s search for meaning by  Viktor E Frankl;  When Breath becomes Air by Paul Kalanidhi; Walk with the Weary by Dr. M R Rajagopal ; Bear with me, Amma by MT Vasudevan Nair; The first cell by Azra Raza;  Awareness of Dying by  Barney G Glaser and Anslem L Strauss; Ethics and Palliative care – a case based manual by Roger Worthington, Just Health and Meeting Health Needs Fairly by  Norman Daniels and World Suffering and Quality of Life – Social indicators research series 56.  This experience was truly rewarding, drawing me into the world of literature and echoing Stephen King’s sentiment that “Books are a uniquely portable magic.” The enthusiasm and eagerness on the students’ faces were palpable, inspiring me to lead a small session on the concept of a Death Café.

As I spoke, I noticed a mix of reactions among the students. Some appeared puzzled, grappling with the notion of discussing death, “What is this lady talking about this morning… regarding death?” while others seemed to reflect on their own experiences with loss. This engagement highlighted the complexity of the topic and the need for open conversations about death and dying.

The students were then divided into three groups to engage in profound discussions about the loss of their loved ones and their personal preferences regarding death. Considering the principles of privacy and confidentiality, I will refrain from sharing specific details of their conversations. However, the emotional currents that flowed through the room were unmistakable. Moments of silence punctuated their dialogue, creating a sacred space where vulnerability and strength coexisted. The words of many students echoed with a courageous resilience, reflecting their deep views on mortality and the human experience.  After the reflections from each group, we transitioned to the next session on Advance Care Planning. The session was taken by Dr. Sunil Kumar, Additional Director, Trivandrum Institute of Palliative Sciences (TIPS). The session was very interactive and delved into the historical context of advance care planning, highlighting important amendments by the Supreme Court and current guidelines, with a particular focus on Advance Medical Directives.

Following an hour of insightful discussion, we opened the floor for discussion. The faculty from AMCHSS, including Dr. Mala Ramanathan (Senior Professor at AMCHSS, SCTIMST), Dr. Rakhal Gaitonde (Professor at  AMCHSS), and PhD scholars (Dr. Tijo George, Mrs. Prinu Jose and Mrs. Anjali Krishnan. R) participated actively.

The students were then divided into groups to discuss the new guidelines and prepared  their comments, fostering an engaging and collaborative learning environment. This event not only provided a platform for critical discussions on end-of-life care but also highlighted the importance of creating spaces for open dialogue about death—a topic often shrouded in silence.

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