Life before death
We talked to Dr Puri to find out more about this field, her book as well as her own life.
The Good Night: Life and Medicine in the Eleventh hour by Dr Sunita Puri sensitively explores the world of palliative care, making it an emotional as well as an informative read.
Dr Sunita Puri was born to Indian parents, both doctors, who relocated to America and struggled through much of their lives to provide their kids a better lifestyle. Her book on palliative care, a branch of medicine that is still finding acceptance among patients, the medical fraternity and her own parents, to some extent, explores the grey areas between life and death that are often left uncatered. It addresses the emotional need of family members, who desperately cling to their ailing relatives, often unwilling to let go even when they see that the person is suffering and is perhaps better off in the world beyond. Without being judgemental, she draws upon her personal experiences with her patients (case histories have been published with permission). Her interactions with terminally ill patients, their quest to fight for survival versus their desire to spend their limited life without suffering is compassionately expressed. Her own battle with her parents as she tries to convince them of her need to specialise in palliative care along with the challenge of explaining the importance of this relatively new but path-breaking concept makes this book a must read. We talked to Dr Puri to find out more about this field, her book as well as her own life.
Excerpts from the interview:
This is an intense and emotional book. How difficult was it for you to relive this journey?
I wrote this book while practicing palliative care every day, so it was actually not difficult for me to relive the patients’ stories. They are certainly emotional, and writing about my patients brought me great joy as I wanted to do justice to their struggles and their humanity. The most difficult writing in the book for me was actually writing about my parents’ immigration stories, my mother’s childhood poverty, and my grandmother’s death. I cried for days when writing about my grandmother, but pushed through the sadness because I could feel her with me as I wrote, soothing me.
Were your patients and their families comfortable with you sharing such intimate details from their lives in your book?
These are all real stories, though I have changed the names, identifying details, and medical details of each patient and family story to protect their privacy. There were two families in the book who I had kept in touch with since caring for their loved ones. Both families read the chapters in which they were featured, provided edits to me, and were completely supportive of being included in the book. They felt that it memorialised their loved one, and their own experience of their loved one’s illness.
Palliative care is a relatively nascent field. How much has changed since you wrote the book?
Palliative care actually began in the 1980s, but it is yet to be well integrated into medical care globally. Compared to its inception, patients, families and physicians are much more open to palliative care, but it is going to take quite a bit of time for palliative care visits to become routine. Our field is, unfortunately, perceived as ‘giving up’ on patients when we actually work very hard to control their pain and suffering, to assuage their fears, to support their families, and to talk openly about what matters most to them in the time they have to live. And patients can enjoy all of these benefits of palliative care consultation right alongside other medical treatments such as dialysis, chemotherapy, or surgery. I hope that my book and the efforts of organisations within India will eventually make palliative care into a service that Indian patients and families expect for themselves when they are very sick.
Often there are socio-cultural factors besides the obvious attachment to the patient that deter family members from pulling the plug on a loved one.
I don’t like and never use the phrase ‘pull the plug’, because it implies that medicine and its machines have control over the end stages of disease. At a certain point in a disease, the most humane and compassionate course of action is to allow nature to take its course, and to focus our efforts on minimising pain and suffering. Keeping people on machines or aggressive treatments at that point may only prolong the process of dying rather than bridging them to a life they would consider worth living. But in many cultures, including our own in India, many people think that if they don’t try ‘everything’ for their loved ones, they are not being a good child, wife, or husband. Letting go and allowing for a peaceful death is perhaps the hardest part of loving someone. But we must remember not to be selfish, and to put the wishes of our loved ones, and their dignity, first.
Why is there such a deep-rooted fear of death that makes us cling to life?
Human beings — and our bodies — are hard-wired biologically to stay alive. Many of my patients feel that they have to fight through physical suffering in order to potentially be cured. Part of my job, which can be very challenging, is to help them to think critically about what quality of life matters to them, and about what forms of suffering are simply too much to bear. Though all of us will certainly die, thinking about these will help us to die on our own terms, rather than suffering physically till our very last breath.
You stress upon the importance of prayer even as patients repose their faith in doctors. Tell us more about this apparent contradiction.
We, as doctors, are socialised to beat disease and cure patients. It is only with time and experience that we come to see that our true role is to cure sometimes and to care always. There will always be pressure on us to perform miracles. But part of being a good doctor means being honest with ourselves and with patients about the limits of our capabilities. I have always been spiritual. I pray every day and talk to God throughout the day, especially when I am going through a hard time at work or in life. Sometimes, I visualise God being in the clinic or hospital room with my patient and I ask him for guidance so that I may care for my patients in the best way possible.
Did your bonding with your doctor parents become stronger after you became a doctor?
My mother is a physician, and when I went through my residency training, I understood so much better how difficult her life had been when she was in her own residency, and she had to send me to Mumbai to be cared for by my naniji. Although I resented her work back then because it kept her from me, I now deeply admire what she was able to do —complete a challenging residency in a new country with nobody here to support her except my father. My parents’ bravery is astounding. Both left their childhood poverty in India and made a life in a new land with barely any resources. I couldn’t understand the complexity of their lives when I was the last child waiting to be picked up at day care. But I included their stories in my book because my parents are an integral part of my life and my work.