× Close


Health and Wellness

mind the gap

Too little, too late: Why palliative care is vastly inadequate in India

Most patients are referred for palliative care when all other treatments fail when they can be more comfortable much earlier.

Twenty eight-year-old Divya Devi placed her hands on her bloated belly, closed her eyes, and leaned her head back against a wall. A black hairband held her thinning hair together. She breathed heavily through her mouth and looked exhausted. Devi was one of the many patients biding their time in the packed waiting room of the palliative care center inside the All India Institute of Medical Sciences in New Delhi on that September morning. Those who could, sat. The others lay down. Almost all of them were terminally ill with cancer. Devi had breast cancer that had spread into her liver.

Devi’s husband, Tarun Kathuria, was standing in a corner. A few days before this visit, Devi’s oncologist told Kathuria that Devi might live just for a week or two and referred her to the palliative care center. That morning, the couple left their two-year-old daughter, Riddhima, with neighbours in Dwarka in west Delhi before coming to the centre.

Like Devi, most patients are referred for palliative care when all treatments fail and the patient is terminally ill. “That’s a wrong approach,” said Sachidanand Jee Bharati, assistant professor of palliative medicine at AIIMS.

Palliative care is specialised medical care to alleviate pain and improve the quality of life of patients with life-threatening medical conditions. Palliative care focuses on symptoms and not on the causeor cure of the ailment. Also called comfort care or symptom management, it involves psychological, emotional and spiritual support to patients and their families. According to World Health Organisation, palliative care should begin early in the course of treatment of a life-threatening disease and continue with the treatment. “It is best to start it with the diagnosis of disease,” said Bharati.

Research shows that cancer patients who receive palliative care with treatment live longer than those who are just treated medically. More than 80 percent of cancer patients in India receive their diagnosis only when their cancers have reached Stages III and IV. “Many of them need emotional counseling because they slip into depression,” said Bharati.

According to Devi Vijay, assistant professor at Indian Institute of Management Calcutta who has studied palliative care, a patient could have a better quality of life for a longer duration – six months or more – if palliative care begins before he becomes terminally ill..“You denied the patient quality of life for those months,” said Vijay. According to estimates about six million people in India need palliative care every year.

The divide in medical approach

When Devi’s turn at AIIMS’ palliative centre came, she walked slowly, holding on to her husband. She told Dr Mahima Gupta who attended to her that she was in severe pain, that she slept a lot, that she did not like to eat food or take medicines. When Gupta asked her if she had a child, Devi put her head in her hands and cried. Gupta consoled Devi, increased her dose of Tramadol, a pain reliever, and asked the couple to return a week later.

Palliative care doctors like Gupta and Bharati, with a long roster of patients, can spend only a few minutes with each. The AIIMS center receives between 80 and 90 patients everyday. “During those five to ten minutes, our priority is to relieve the patient of disease symptoms like pain and make them understand the stage of their disease,” said Bharati.

Surgical oncologist MD Ray believes that he can provide his patients emotional support during his regular consultations. “Only a few minutes are enough,” he said. Ray and other oncologist see palliative care differently from doctors like Bharati and Gupta. Ray refers his patients for palliative care only when their disease cannot be cured. “It is a kind of end-of-life care,” said Ray.

When asked should it begin with the diagnosis of the disease, Ray said, “No, no. Not with the diagnosis of the disease. If you can cure the patient why suggest palliative care.”

Shyam Aggarwal, oncologist at Delhi’s Sir Ganga Ram Hospital echoes Ray but also point to the possible impracticality of having earlier palliative care when there is no infrastructure other than a few hospices in Delhi and other states. “Where would you refer the patient?” asked Aggarwal. “It is bookish and far from reality to say palliative care should begin with diagnosis of the disease. It is a thing of affluent societies.”

Given the disease burden, poverty and population of the country, many patients don’t even get access to quality cures, he added.

The views of Ray and Aggarwal fit in with the initial findings of ongoing research by Sanghamitra Bora, a doctor in Kolkata who is studying why doctors who treat chronic diseases refer their patients for palliative care. Bora is baffled that most doctors she interviewed refer their patients for palliative care when they are terminally ill. “Doctor’s don’t want to let go of their patients,” she said, recounting how one asked her why she would offer home care to his patient. According to Bora, the oncologist said, “He is under my treatment. I will take care.”

Bora also observed that doctors misunderstand and mistrust palliative care. “They think that it is just about holding hands and crying with the patient.” Palliative care involves talking to the patient about their goals and preferences. However, research doesn’t show that patient’s preferences are adequately met.

“Unfortunately medical practice in India is disease based, not person based,” said Bharati.

Missing from the curriculum

Parmod Kumar Julka, former dean and professor of oncology at AIIMS believes that doctors delay references to palliative care because they have never been taught about its benefits. “That is why they don’t have a clear idea about what is it and when it should begin,” he said. “It is not entirely their fault.” The Medical Council of India accepted palliative care as a medical specialty only in 2010 and two years later announced a post graduate course in Tata Memorial Hospital in Mumbai, and in AIIMS this year. However, palliative care is not taught as a subject during MBBS education as many suggest it should be.

“This will orient students toward this medical specialty,” says MR Rajagopal, director of the World Health Organisation collaborating Center for Policy and Training on access to pain relief “Today a medical student passes MBBS without learning how to properly assess or manage pain.”

In 2014, Rajagopal and other experts designed a curriculum for undergraduate medical and nursing courses but the Medical Council of India is still to consider it.

The health ministry designed National Palliative Care Strategy in 2012 to be implemented in the five year plan ending 2017 to create basic infrastructure for palliative care in India. However, the strategy was not funded. So, the ministry created a flexi pool and asked the states to submit a palliative care plan to avail up to Rs 48 lakhs to set up ten-bed palliative care centers in their district hospitals. Only a few states like Kerala, Tamil Nadu, and Maharashtra stepped up to the plan.

“States aren’t asking for money, what would you do?” asked Jagdish Prasad, Director General of Health Services in India. “Big states like Uttar Pradesh, Madhya Pradesh, Gujarat have not asked for any funds.”

Rajagopal says that there is no monitoring mechanism to track if the states that took funds for palliative care are using it for the same. Kerala, with its palliative care policy and unique community led palliative care system, has shown remarkable success in palliative care. However, different regions would need different palliative care models given the geography, culture, facilities in those regions, says Vijay.

Back in Delhi, the Devi’s tryst will palliative care did not last long. The day she went to AIIMS, palliative counselors suggested that she be admitted into a hospice, where nurses continued to make her comfortable. A few days later, around 1pm she began to vomit blood. Her husband rushed to the hospice but she was dead by the time he got there.

We welcome your comments at letters@scroll.in.
Sponsored Content BULLETIN BY 

What to look for when buying your first car in India

Hint: It doesn’t have to be a small car.

When it comes to buying their first car, more Indians are making unconventional choices. Indian car buyers in 2016 are looking for an automobile that is a symbol of their aspirations and sets them apart from the herd. Here are a few things you should consider when buying your first car:

Look beyond small cars

According to the JD Power India Escaped Study (2015), the percentage of new-vehicle shoppers who considered a small car reduced by 20% over three years—from 65% to 45%. Buyers are now looking at bigger, affordable cars and luckily for them, there are more choices available. Known as compact sedans, these cars offer the features of a sedan, are larger than hatchbacks and contain a boot. These sedans offer the comfort and features that once only belonged to expensive luxury cars but at a price that’s within the reach of a first-time car buyer.

Design and styling is important but don’t forget utility.

It’s a good idea to have a car that has been designed over the past three years and doesn’t look outdated. Features like alloy wheels and dual beam headlamps add to the style quotient of your vehicle so consider those. Additionally, look for a car with a sturdy build quality since Indian urban conditions may not always be kind to your car and may furnish it with scrapes and dents along the way.

Image Credit: Volkswagen
Image Credit: Volkswagen

Does it test-drive well?

In 2014, 35% of new-vehicle buyers researched vehicles when they were buying but by 2015, this number had risen to nearly 41% according to the JD Power study. While the internet is the primary source of research in India, the best source of information about a car is always a test drive. Listen to the sales person and read all online reviews, but test every feature to your satisfaction.

Where do you plan to drive?

Look for a car that’s spacious and comfortable while being easy to drive or park on our crowded city roads. Compact sedans are perfectly suited for Indian driving conditions. Some of them come with parking assistance and rear view cameras, rain sensors and front fog lights with static cornering that are excellent driving aids. If you plan to use the car for long drives, compact sedans that provide cruise control, a tilt and telescopic adjustable steering wheel and a front centre armrest would be perfect. On road trips with family members who usually pack more than necessary, extra elbow room inside and good boot-space is a blessing.

Is the model about to be discontinued?

Never buy a model that is going to be discontinued because it could result in difficulty finding spare parts. Buying an old model will also affect your resale value later. In 2015, according to the same report, 10% of shoppers considered newly launched car models as against 7% in 2013—a strong indication that newer models are being preferred to old ones.

Diesel or petrol?

Diesel and petrol cars have different advantages, and it’s best to take a decision based on the distance you plan to drive on a regular basis. While petrol cars are usually priced lower and are more cost effective when it comes to service and maintenance, diesel cars typically have better mileage due to higher efficiency and provide a smoother drive due to higher torque. Additionally, diesel is the cheaper fuel. So it makes more economic sense to buy a diesel car if you are driving long distances every day.

Most importantly, safety always comes first.

Look for a car that is built sturdy and pays extra attention to safety features like Anti-lock Braking Systems (ABS), side impact bars and dual front airbags. Safety is also a function of the design and features such as a galvanized steel body add to the strength of the build. It’s important to remember not to make trade-offs on safety for less important features when choosing variants.

Buying your first car is an important milestone in life. And the new Volkswagen Ameo has been designed with several first-in-segment features to cater to all the needs of a first-time car buyer in India. Its bold design and elegant styling along with state-of-the-art features like cruise control, reverse parking camera and sensors, and intelligent rain sensors set it apart from other cars in its class. Its safety features are also a notch above, with dual front airbags that are standard in every variant and side impact bars. A sturdy galvanized steel body and laser welded roof cocoon its passengers from harm, and its modern ABS, that is also standard in all variants, prevents the wheels from locking when you brake hard. A six-year perforation warranty and a three-year paint warranty ensure that the car body is protected from scratches and dents. The Ameo comes in both petrol and diesel variants. Check out all the features of the Ameo here. Also hear the experience of two first time car buyers in the video below.


This article was produced by the Scroll marketing team on behalf of Volkswagen and not by the Scroll editorial team.

× Close