When cancer care overflows hospitals, families and NGOs take the burden

Sleep comes in fragments. People wake repeatedly, afraid of losing their place. No one complains.

What plays out nightly outside AIIMS reflects a national pattern.

The Delhi HC last week directed the Delhi Urban Shelter Improvement Board (DUSIB) to temporarily take over subways around major hospitals immediately and make arrangements, including setting up of beds.

‘This is what life looks like’

Many here have travelled from Bihar, Uttar Pradesh, Rajasthan and Haryana. They are not here early out of choice. They are here because waiting months for an online appointment is not an option when someone in the family has cancer.

“Appointment counters open at 8 am, but there is no guarantee,” says Rakesh Kumar, 38, who spent the night outside the hospital with an ailing relative.

For some, this is their first night outside the hospital. For others, it has become routine.

Saurabh Kumar, 40, has travelled from Samastipur in Bihar for the treatment of his mother, Shakuntala Devi, 72. She has uterine cancer, complicated by tuberculosis.

Kumar earns between Rs 10,000 and Rs 15,000 a month teaching tuition. “I call myself unemployed,” he says. “This is what life looks like when someone in your family has cancer.”

They arrived at night because there was no other way. Online appointments run into long waiting periods. Those who cannot afford to wait come early and stay.

“The struggle begins long before you meet a doctor,” Kumar says. “And the conditions outside can make patients even sicker.”

A burden growing faster than the system

India’s cancer burden has grown steadily over the past decade, but deaths have risen far faster than new cases.

According to a written reply in the Lok Sabha by the Minister of State for Health and Family Welfare, Prataprao Jadhav, in December 2025, total cancer cases increased from 13.9 lakh in 2015 to 15.3 lakh in 2024, a rise of over 10 per cent. In the same period, cancer deaths jumped from 6.8 lakh to 8.7 lakh, an increase of nearly 29 per cent.

In effect, a larger proportion of those diagnosed with cancer are now dying than a decade ago. The mortality-to-incidence ratio rose from 49 per cent in 2015 to 57 per cent in 2024.

Public health experts have repeatedly pointed to what this widening gap between incidence and mortality suggests: late diagnosis, uneven access to treatment, and the financial strain that pushes many families to the margins of care.

For patients arriving late in the course of the disease, hospitals manage the cancer. Much of the remaining burden, pain, logistics, and exhaustion spills into homes, onto pavements, and into the lives of caregivers.

‘People think you are untouchable’

Patients and caregivers participating in an art and craft session at a CanSupport daycare centre.(Express Photo)

Cancer, Kumar says, does not arrive alone. “People think you are untouchable until they get cancer themselves,” he says. “They don’t want to sit near you. They don’t want to talk.”

Isolation often follows diagnosis. Neighbours stop visiting. Friends drift away. Even relatives hesitate, unsure what to say or how to help.

It is in these gaps — between diagnosis and treatment, between hospital visits and home — that volunteers and non-governmental organisations step in. “They teach patients how to live with cancer,” Kumar says.

Addressing the gaps

One such organisation is CanSupport, which works with cancer patients and caregivers around AIIMS and across Delhi-NCR.

At camps and centres supported by the organisation, Kumar says, people come not only for counselling but for essentials. “Some people who don’t even have cancer come here because they get blankets, kettles, medicines… Everyone is just trying to manage,” he says.

According to Dr Sanjeev Sharma, an oncologist at a private hospital in Bengaluru, organisations such as CanSupport play a complementary role to hospitals.

“Hospitals are designed primarily for active, curative treatment, and beyond a point they are simply not structured to provide the kind of sustained, non-clinical support that advanced cancer patients require,” he says.

“That is where non-profit organisations play a crucial, complementary role. Once further aggressive treatment is no longer advised, these groups step in to provide palliative and hospice care — pain management, catheter care, psychological and psychosocial counselling, and support for families — services that hospitals cannot always deliver comprehensively.”

Dr Bhawna Sirohi, a cancer specialist and the medical director of Balco Medical Centre, a not-for-profit oncology hospital in Raipur, concurs. “I think the most important role that these organisations play is in actually addressing the gaps in our cancer care system, for example, awareness and early detection.”

Sirohi describes screening as one of the most visible points of intervention. “We do this quite a lot with screening camps all over Chhattisgarh and Odisha,” she says, and emphasises continuity of care after screening — either at her centre, AIIMS, or regional cancer centres.

NGOs also support nutrition, palliative and home-based care, and, she notes, research and cancer registries that contribute to long-term cancer control.

Care that comes home

A woman at a CanSupport daycare centre holds up a sketch. (Express Photo)

CanSupport’s work extends beyond day care.

The organisation runs a large home-based palliative care programme across Delhi-NCR and Pune. Teams, each comprising a doctor, nurse, counsellor and driver, travel daily to patients’ homes. Field teams step in during emergencies, when a patient’s condition worsens, or when medical staff need support with specialised procedures.

‘Mann behel jaata hai’

This is the second time Shakuntala Devi has visited CanSupport’s centre. During an earlier visit, she stayed at a Vishram Sadan near AIIMS, sharing a tent with other patients and caregivers. As days blurred into hospital visits, waiting, and fatigue, the day-care centre offered distraction and helped her forge new bonds. “Mann behel jaata hai (The mind finds a distraction),” Devi says softly.

There is food: hot meals, tea, snacks, fruits and dry fruits. On some days, there is storytelling; on others, music, meditation or craft.

Devi recalls befriending another woman during her stay at the Vishram Sadan. “She was (Mohammadan) Muslim,” Devi says shyly. “We were together in the same tent for two days. Then she was taken into the emergency.”

They did not exchange numbers. Devi does not know what became of her. “I really liked her,” she said, and fell silent.

When caregiving becomes a full-time job

For Sonam Bhatia, a caregiver, these visits have been crucial. Her mother-in-law, Asha Bhatia, 65, has cancer in her right breast. The family lives in Dwarka and travels to AIIMS for treatment. Asha’s son earns Rs 20,000-25,000 a month as a salesman.

“They (CanSupport) provide mental as well as medical support,” Sonam says. “Palliative care. Expensive medicines.”

What stays with her is the follow-up — phone calls asking about the team’s behaviour, suggestions for exercises and diet, and occasional fruit deliveries. “All our questions are answered,” she says.

Caregiver burnout

By the time families reach CanSupport, exhaustion is often already visible. “Often caregivers are completely burnt out,” says Ranjana Sethi.

A retired vice principal and former head of school, Sethi first approached the organisation in December 2018, shortly after her husband passed away. She was initially asked to undergo grief counselling before being allowed to work directly with patients.

She began volunteering in 2019 and underwent months of training — handling difficult conversations, breaking bad news, and dealing with patients in delirium. Today, she works as a quality assurance executive, overseeing home-care services across Delhi-NCR.

Every evening, around 5.30 pm, she calls patients and caregivers. “You don’t make it sound like a check call,” she says. “You ask how the patient is doing. You ask how they are doing. And they automatically start sharing.”

If she senses distress, Sethi flags it to a counsellor. “All questions related to medicine or diet are referred to professionals,” she says. “But just hearing people out also goes a long way.”

What emerges mirrors what mental health experts describe as caregiver burnout, a state of physical, mental and emotional exhaustion driven by prolonged caregiving.

‘It is not just about the cure’

At an organisational level, CanSupport frames its work around dignity. “Quality of life means conforming to the real felt needs of patients and caregivers,” says Dr Ambika Rajvanshi, CEO, CanSupport. “It is about empowering them to achieve their own definition of a meaningful life.”

The organisation’s work, she says, spans physical, emotional, functional and social needs. “We treat the person, not just the disease.”

With many cancer cases in India diagnosed at advanced stages, families often arrive already financially and emotionally stretched. In such situations, Dr Rajvanshi says, palliative care is essential.

‘I don’t like the ‘bechari’ approach’

Back in the day-care centre, Deepti Banerjee, 66, has been volunteering for over two years. “I enjoy interacting with them the most,” she says. “I don’t like the bechari (helpless) approach.”

Anyone can fall ill, she says. What matters is how people are treated afterwards. Banerjee describes how volunteers arrive early to pack dry fruit packets, organise activities and distribute essentials. “It is a wholesome day for them.”

Most regular volunteers, she adds, are over 40. “Not because younger people don’t care, but because time itself is a privilege.”

As volunteers begin packing up, Shakuntala Devi sits quietly with her hands folded around a steel cup of tea.

For a few hours, at least, she was not waiting alone.