course change

India moves towards treating disease by targeting not just causes but also symptoms

New programmes are being set up based on evidence that early palliative care improves patients’ survival and quality of life.

Tata Memorial Centre, India’s premiere hospital for cancer treatment, is in the process of setting up five centres for palliative care to treat children with non-cancerous diseases. The programme indicates a significant departure from how palliative care is perceived and provided in India, where it is mostly associated with alleviating pain and symptoms for people who are dying.

“It is incorrect to think that palliative care is end-of-life care,” said Dr Pradnya Talawadekar, project coordinator of children’s palliative care at Tata Memorial Centre. “Children with chronic conditions, like cerebral palsy and mental retardation, may see a significant improvement in the quality of life if they receive palliative care.”

Palliative care is the branch of medicine that deals with relieving pain alleviating symptoms without addressing the cause of a disease. The goal here is to make a person more comfortable and improve his or quality of life.

Many doctors in India are now advocating a shift from providing palliative care when all other treatments for recovery have been exhausted to providing palliative care as soon as a disease is diagnosed.

“The problem is that doctors think that palliative care practitioners are there to pour Ganga jal in the mouth of the patient,” said Dr Vineeta Sharma, head of palliative care department at Bhaktivedanta Hospital in Mira road, referring to the Hindu ritual of giving a dying person water from the Ganga river to ensure his salvation. “Doctors would only refer the patients to me when they would have a few hours to live.”

Pheroza Bilimoria who runs Palcare, a palliative care facility in Mumbai, said that most of her patients are admitted when their disease at already at advanced stages. “Affluent patients try every possible treatment before considering palliative care,” said Bilimoria. “About 49% of patients die within the first two months of enrolling as they are already in a very advanced stage of the disease.”

A patient receiving palliative care at home. (Photo: The Jimmy S Bilimoria Foundation)
A patient receiving palliative care at home. (Photo: The Jimmy S Bilimoria Foundation)

But this is what Tata Memorial Centre has set out to change.

“We want to introduce palliative care early so that patients can receive holistic care,” said Dr Jayita Deodhar, who is currently in charge of the palliative care department at the hospital. “Patients as well as doctors have to understand that palliative care has benefits in non-cancerous conditions such as thalassemia and HIV.”

Early palliative care

Dr Geeta Joshi, chief executive officer of the Community Oncology Institute attached to the Gujarat Cancer Research Institute, remembers treating a 62-year-old man from Ahmedabad with recurring buccal mucosa – lining of the mouth – cancer. “He survived for almost two years on palliative care and was almost pain-free,” she said. “Palliative care helps in symptom control, which helps improve adherence [to therapeutic treatment] and reduces dropout rate which will improve the overall prognosis of the patient.”

Joshi’s observations are backed by plenty of recent research on the benefits of starting palliative treatments. For example, a study published in the New England Journal of Medicine in 2010 showed that integrating palliative care early with standard oncological care in patients with metastatic non–small-cell lung cancer resulted in increased survival by two months and improvements in quality of life and mood.

A team of doctors at Tata Memorial Centre are now looking at the benefits of introducing early palliative care for patients with head and neck cancer.

Early palliative treatment is especially important for cancer patients, pointed out Dr Shrikant Atreya, a palliative care consultant at Tata Memorial Centre in Kolkata. “Chemotherapy leads to side effects which need to be addressed,” he said. “Oncologists have enough on their plate. We need a separate specialty for the management of the pain and psychological impact of the treatments.”

Joshi and her colleagues from the gynaecological department of the Gujarat Cancer Research Institute are devising a project to understand the benefits of early palliative care in women with cervical and ovarian cancers.

A beginning

There are problems with starting palliative treatment early, especially in India. Most cancer patients are diagnosed only when their diseases are in an advanced stage and introducing palliative care early is a challenge. At the same time, there is a rise in the demand for palliative care, said Joshi. She once used to get five patients a day. “Now, I see more than 100 patients a day. But, more people need it and we have to reach them.”

India has a national programme for palliative care which is a state sponsored scheme with funding under the National Health Mission. For example, Gujarat has been sanctioned Rs 35 lakh to develop infrastructure and train staff for palliative care in six districts of the state, Joshi said. Dr Gayatri Palat from MJN Cancer Hospital in Hyderabad said that the Telangana health insurance scheme covers palliative care. “Patients get free medicines and other support related to hospitalisations through the insurance,” she said.

But, implementation is not uniform across the country. In Maharashtra, many trained palliative care staff have left these jobs as they had not been paid for almost eight months. A Maharashtra’s health department official said, “There was no funding and we could not pay them. Now, we are planning to revive the program by training and recruiting new staff.”

Deodhar estimates that less than 1% of patients who need of palliative care actually get it. “There is only one palliative care physician for every one million patients,” said Deodhar.

The biggest challenge comes from within the medical community as doctors fear losing patients, if they refer them to palliative care. Another challenge is acceptance of providing palliative for children. “Palliative care improves quality of life of both the patient and the family,” said Talawadekar. “Teaching parents to dress wounds can help the child physically, mentally and emotionally.”

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Swara Bhasker: Sharp objects has to be on the radar of every woman who is tired of being “nice”

The actress weighs in on what she loves about the show.

This article has been written by award-winning actor Swara Bhasker.

All women growing up in India, South Asia, or anywhere in the world frankly; will remember in some form or the other that gentle girlhood admonishing, “Nice girls don’t do that.” I kept recalling that gently reasoned reproach as I watched Sharp Objects (you can catch it on Hotstar Premium). Adapted from the author of Gone Girl, Gillian Flynn’s debut novel Sharp Objects has been directed by Jean-Marc Vallée, who has my heart since he gave us Big Little Lies. It stars the multiple-Oscar nominee Amy Adams, who delivers a searing performance as Camille Preaker; and Patricia Clarkson, who is magnetic as the dominating and dark Adora Crellin. As an actress myself, it felt great to watch a show driven by its female performers.

The series is woven around a troubled, alcohol-dependent, self-harming, female journalist Camille (single and in her thirties incidentally) who returns to the small town of her birth and childhood, Wind Gap, Missouri, to report on two similarly gruesome murders of teenage girls. While the series is a murder mystery, it equally delves into the psychology, not just of the principal characters, but also of the town, and thus a culture as a whole.

There is a lot that impresses in Sharp Objects — the manner in which the storytelling gently unwraps a plot that is dark, disturbing and shocking, the stellar and crafty control that Jean-Marc Vallée exercises on his narrative, the cinematography that is fluid and still manages to suggest that something sinister lurks within Wind Gap, the editing which keeps this narrative languid yet sharp and consistently evokes a haunting sensation.

Sharp Objects is also liberating (apart from its positive performance on Bechdel parameters) as content — for female actors and for audiences in giving us female centric and female driven shows that do not bear the burden of providing either role-models or even uplifting messages. 

Instead, it presents a world where women are dangerous and dysfunctional but very real — a world where women are neither pure victims, nor pure aggressors. A world where they occupy the grey areas, complex and contradictory as agents in a power play, in which they control some reigns too.

But to me personally, and perhaps to many young women viewers across the world, what makes Sharp Objects particularly impactful, perhaps almost poignant, is the manner in which it unravels the whole idea, the culture, the entire psychology of that childhood admonishment “Nice girls don’t do that.” Sharp Objects explores the sinister and dark possibilities of what the corollary of that thinking could be.

“Nice girls don’t do that.”

“Who does?”

“Bad girls.”

“So I’m a bad girl.”

“You shouldn’t be a bad girl.”

“Why not?”

“Bad girls get in trouble.”

“What trouble? What happens to bad girls?”

“Bad things.”

“What bad things?”

“Very bad things.”

“How bad?”

“Terrible!!!”

“Like what?”

“Like….”

A point the show makes early on is that both the victims of the introductory brutal murders were not your typically nice girly-girls. Camille, the traumatised protagonist carrying a burden from her past was herself not a nice girl. Amma, her deceptive half-sister manipulates the nice girl act to defy her controlling mother. But perhaps the most incisive critique on the whole ‘Be a nice girl’ culture, in fact the whole ‘nice’ culture — nice folks, nice manners, nice homes, nice towns — comes in the form of Adora’s character and the manner in which beneath the whole veneer of nice, a whole town is complicit in damning secrets and not-so-nice acts. At one point early on in the show, Adora tells her firstborn Camille, with whom she has a strained relationship (to put it mildly), “I just want things to be nice with us but maybe I don’t know how..” Interestingly it is this very notion of ‘nice’ that becomes the most oppressive and deceptive experience of young Camille, and later Amma’s growing years.

This ‘Culture of Nice’ is in fact the pervasive ‘Culture of Silence’ that women all over the world, particularly in India, are all too familiar with. 

It takes different forms, but always towards the same goal — to silence the not-so-nice details of what the experiences; sometimes intimate experiences of women might be. This Culture of Silence is propagated from the child’s earliest experience of being parented by society in general. Amongst the values that girls receive in our early years — apart from those of being obedient, dutiful, respectful, homely — we also receive the twin headed Chimera in the form of shame and guilt.

“Have some shame!”

“Oh for shame!”

“Shameless!”

“Shameful!”

“Ashamed.”

“Do not bring shame upon…”

Different phrases in different languages, but always with the same implication. Shameful things happen to girls who are not nice and that brings ‘shame’ on the family or everyone associated with the girl. And nice folks do not talk about these things. Nice folks go on as if nothing has happened.

It is this culture of silence that women across the world today, are calling out in many different ways. Whether it is the #MeToo movement or a show like Sharp Objects; or on a lighter and happier note, even a film like Veere Di Wedding punctures this culture of silence, quite simply by refusing to be silenced and saying the not-nice things, or depicting the so called ‘unspeakable’ things that could happen to girls. By talking about the unspeakable, you rob it of the power to shame you; you disallow the ‘Culture of Nice’ to erase your experience. You stand up for yourself and you build your own identity.

And this to me is the most liberating aspect of being an actor, and even just a girl at a time when shows like Sharp Objects and Big Little Lies (another great show on Hotstar Premium), and films like Veere Di Wedding and Anaarkali Of Aarah are being made.

The next time I hear someone say, “Nice girls don’t do that!”, I know what I’m going to say — I don’t give a shit about nice. I’m just a girl! And that’s okay!

Swara is a an award winning actor of the Hindi film industry. Her last few films, including Veere Di Wedding, Anaarkali of Aaraah and Nil Battey Sannata have earned her both critical and commercial success. Swara is an occasional writer of articles and opinion pieces. The occasions are frequent :).

Watch the trailer of Sharp Objects here:

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This article was published by the Scroll marketing team with Swara Bhasker on behalf of Hotstar Premium and not by the Scroll editorial team.