by Vaidehi Mujumdar 

Deshpande Photo

My grandmother passed away during my senior year of college, one week before my 23rd birthday. She died in the house in which I had lived for the first three years of my life. I was in New Hampshire, she in a city in Central India.

For months my grandmother had insisted to my mom that she was going to get better and was excited about me visiting her, “Vaidehi and I will talk and talk for hours and she will spend months with me”. This refrain continued even when it became clear that she was dying.

My grandmother had stories to tell and to pass on but was not able to talk with all of the people that she wanted to. Dignity therapy is one approach that I feel could have helped her, and us, immensely.

Dignity therapy is a short-term psychotherapy that involves asking patients who have life-limiting or terminal illnesses about their life history and using that narrative to create a type of legacy document. A trained interviewer conducts these sessions. The Dignity Model and Dignity Therapy were created by Harvey M. Chochinov MD, PhD and his research team at the University of Manitoba about 13 years ago. In 2011, a randomized control trial led by Chochinov and his colleagues suggested that dignity therapy had spiritual and emotional benefits for people nearing the end of their life.

Ignorance, fear or anxiety about illness, death and dying can all have a negative impact upon our relationships with dying people. Most recently, Atul Gawande, in The 2014 BBC Reith Lectures and in his latest book, Being Mortal: Medicine and What Matters in the End, speaks of how we deny people choices of coping and autonomy at the end-of-life. Gawande’s story about his own grandfather’s dignified death in India, surrounded by family, struck a chord with me.

The post-death rituals for my grandmother were family oriented and included close family, as is customary. However, I can’t say for sure that her end-of-life care was dignified or respectful at the hospital. A 2010 Times of India article ranked India as providing the worst in end-of-life care. It seems to me that dignity therapy could be one way of improving on that ranking. While there are many social, economic, and political factors to consider, improving end-of-life care is also about changing the way death and debilitated bodies are viewed in Indian society.

The emotional and practical demands of facing the death of a loved one and of care-giving does not always allow time for listening to a person’s stories. My grandfather, as one of my grandmother’s main caregivers, spent the better part of a decade supporting her through her experiences of breast cancer. It was exhausting for an 82 year-old-man. Other family members travelled great distances to help care for her. But in the midst of all the difficulties and profound emotions, it seems as if my grandmother’s personal story was lost.

There is an enduring stigma attached to breast cancer in India, linked to ideas about femininity, poverty, and the devaluation of women’s bodies. Having worked with both resource-limited populations in Central and Western India, as well as socio-economically privileged women of South Asian descent in the United States, I have felt that breast cancer advocacy remains stigmatized in South Asian communities. Open discussion of women’s bodies is still something of a novelty and there are also lingering taboos, misconceptions and unfounded fears about cancer. Some people continue to believe that no one will want to marry into a family that has “cancer genes”.

I think that dignity therapy could have helped my grandmother with the feelings of shame about her body and the cancer. It was crushing at times – the shame of hiding her mastectomy, the once long natural black hair now in wisps and dyed, and a body that no longer seemed to be her own.

As she was dying, I was finishing my thesis, writing narratives about people I had met only a year ago when conducting fieldwork in Mumbai on illness, trauma, and suffering. From my field notes, I was writing about women I barely knew, gleaned from questions such as:

“Tell me a little bit about your life?”

“What are your most important accomplishments, and what do you feel most proud of?”

“What are your hopes and dreams for your family/community/friends/yourself?”

“In writing your story about x,y,z, are there other things that you want me to include?”

While the people I worked with in Mumbai were not dying, it seemed as if they were gaining a sense of empowerment and self-worth in being able to share and tell their stories. Physicians Sayantani DasGupta and Rita Charon in the Program in Narrative Medicine, at Columbia University, have written and lectured extensively on how stories are at the heart of human wellbeing and healing. DasGupta’s 2013 Tedx talk describes the art of listening and receiving narratives as not an act of mastery, but of ‘humility’ in which a story can also affect and change the listener.

Narratives, as I have seen over and over again, can give meaning to events that seem unfathomable. They can connect us to other people and help us heal as feelings, experiences and thoughts are voiced, gestured to, or written down and materialized on the page. It is some of these beliefs in stories as relational that are at the heart of dignity therapy.

Photo 2

In his book, Dignity Therapy: Final Words for Final Days, Dr. Chochinov writes about a woman suffering from end-stage breast cancer who participates in dignity therapy. The woman tells a rich and complex story about her life. What struck me is Chochinov’s description of the woman’s appearance as sickly, while her words are vibrant and full of life. The vignette reminded me of my grnadmother’s hope, will and clarity of mind in her last days. She read and wrote all the time. She had pursued masters and doctoral degrees in India at a time when it was uncommon. She was a social advocate for women and girls, had raised three children and was closely involved with her grandchildren. She was a pioneer in her own way and in her own time. She remembered small details. Her stories I know, would have carried us and in a way that could have allowed the women in my family to give greater homage to those that paved the way for us to be who we are and who we aspire to be in the future.

I wish I had been able to provide some sort of dignity therapy for my grandmother. Dignity therapy might have helped her see that the woman in the mirror was a human being who had cancer. It may have helped to alleviate or banish feelings of shame and fear.

I dedicated my thesis, built on the narratives of other courageous women, to my maternal and paternal grandmothers – both are now gone. Both women died from breast cancer.

Although we carry memories and stories with us, it’s not always possible to create pass on memories or create new shared stories in families that are scattered all over the world. Often, I know this is the reality for many migrants. And for these families, such as mine, I wish that we had been able to carry words – written, spoken, felt – as our relationships with our loved ones grew more distant and infrequent.

I will never know whether dignity therapy would have helped my grandmother to find some peace throughout her illness. But you do not need to be a dignity therapist to listen carefully and attentively to those facing the end of their lives.

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Vaidehi Mujumdar is an aspiring physician, clinical advocate, activist, and writer who strongly believes health and social justice are part of the same story. Her interests primarily focus on narrative medicine, social determinants of health, and mixed-methods clinical research. Vaidehi’s past professional experiences include ethnographic research, health program development/evaluation, and science policy work with non-profits, NGOs, and medical centers in India, South & Latin America, and the Southern and Eastern U.S. A graduate of Dartmouth College, Vaidehi’s published work has focused on women’s sexual and reproductive health, self-care, trauma, and health advocacy in minority communities. Follow her on Twitter at @VeeMuj.

This article was commissioned for our academic experimental space for long form writing curated and edited by Yasmin Gunaratnam. A space for provocative and engaging writing from any academic discipline.

4 thoughts on “How can we combat the ignorance, fear and anxiety about illness, death and dying?

  1. As I make my was through my journey in academia there is alot that I read and I understand the words because I understand english but sometimes it takes a while for my life experience to catch up with my knowldge things so that I then really understand what I have been reading. I have heard many times about how narratives and storytelling play a crucial role in recovery and healing, and I have always know this to be true. It is is only now as I begin to find the courage to share myself through stories that I am beginning to understand the powerful impact stories have on understandings and knowledge. Thank you for sharing.

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  2. Leslie, thank you for your comment and I absolutely agree. Dignity therapy is used in a more clinical/medical model. However, collecting and putting into words the stories of those in the “second half” and honestly…those that just feel writing helps them express and live fuller lives is just as important. Thank you for that perspective. This article speak to some of that: http://well.blogs.nytimes.com/2015/01/19/writing-your-way-to-happiness/?smid=tw-share

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  3. Thank you for this important piece in which you tell a personal story and then grow a larger view. I have never heard of Dignity Therapy, and it seems to me that as important as it is for “patients with life-limiting and terminal illnesses,” it is also important for those healthier people living “the second half” of their lives. Might our acceptance of aging and death benefit through these legacy stories—that so many people carry with them to their graves?

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