 | Five-year-old Akarsh has an aggressive brain tumour that is likely to cut short his young life. He came to Subhita, CanKids Pediatric Palliative Care Center (PPCC) when doctors at the All India Institute of Medical Sciences (AIIMS) said that he had slim chances of survival. Three months later, after end-of-life care at PPCC, he returned home. “Nobody has tutored Lalla but he often says that God will come to take him away,” said his distraught mother Reena Devi when I met her at PPCC. |
All she wants now is to make Akarsh’s last days comfortable. She has had every possible support from the PPCC team at the centre. “They fulfilled Lalla’s every wish be it the food of his choice or his birthday celebrations,” said a grateful Reena.
| She recalled his momentous birthday on June 13. Though she had set her heart on taking Akarsh to Manona Dham temple in Rai Barelli, his serious medical condition made this unfeasible. The CanKids team arranged an online darshan and sent a male nurse Rohit Singh to bring holy water from the temple. “Even our family wouldn’t do so much for us, “ said Reema who remains strong despite her obvious anguish. CanKids Founder Chairman Poonam Bagai visited Akarsh at his bedside on his birthday. It was also the CanKids Annual Day. When Akarsh came to PPCC he was immobile. He can now move his head slightly. On the face of it, his condition has improved with the support of PPCC doctors, nurses, psychologists, and the team. |  |
He is happy to be home. But the deadly cancer has ravaged his little body. Some weeks ago he began to hallucinate. Dr Haresh Gupta Chief Programme Officer-Medical and head of PPCC and Pediatric Cancer Research Institute (PCRI), reassured his mother about symptoms. She also received counselling to tide her over her trauma as she watched her young son slip away.
 | The key medical professional at PPCC is Dr Amita Mahajan, Senior Consultant, and Clinical Lead, Pediatric Haematology - Oncology Service at Indraprastha Apollo Hospitals, New Delhi, who is a key figure at PPCC. She leads the CanKids Health Systems Strengthening or Suddridh project. Mahajan visits PPCC to assess a child’s condition and conducts virtual consultations. |
She describes palliative care as a “philosophy of treatment” that needs to be integrated with pediatric oncology treatment. CanKids’s model of palliative care, she says, provides holistic support to a child with cancer and the family, regardless of whether the child recovers or succumbs to the illness.
“We look at the physical, mental, emotional, and spiritual aspects as well. As doctors, we treat the pain but we also need to identify other symptoms and specific needs like lack of hope, anorexia, anxiety due to uncertain cure prognosis or financial stress. We look at managing these aspects, using both medical and non-medical measures,” she emphasizes.
Subhita, India’s only stand-alone Pediatric Palliative Care Center in India was set up in 2012. The centre is a dream project of Poonam Bagai, a colon cancer survivor and founder chairman of CanKids KidsCan. She is also vice chairman of Pallium India, a Trivandrum-based NGO that aims at the alleviation of the health-related suffering of a large segment of the Indian population.
Subhita, India’s only stand-alone Pediatric Palliative Care Center in India was set up in 2012. The centre is a dream project of Poonam Bagai, a colon cancer survivor and founder chairman of CanKids KidsCan. She is also vice chairman of Pallium India, a Trivandrum-based NGO that aims at the alleviation of the health-related suffering of a large segment of the Indian population.
PPCC is a 10-bed Nursing Home under the Delhi Government Nursing Act. It has in-patient, outpatient and daycare facilities. The centre also functions as a hospice. On any given day, PPCC’s ambulatory clinic gets children with cancer who pour in largely from AIIMs and other overstretched hospitals. The clinic is an OPD facility for children who need antibiotics, says Jubilee, head nurse at PPCC. It also functions as a daycare. The children get lunch between antibiotic doses. If any complications arise, the doctor is contacted and they may be admitted to daycare.
A child is referred to the centre by treating doctors or CanKids social support teams at partner childhood cancer hospitals. Sometimes this could be even before diagnosis or treatment has begun. A child could also be there if symptoms flare up like fatigue, breathlessness, difficulty in swallowing, ulcer and loss of appetite. An important feature of the centre is psychological counselling for the child and the family throughout the cancer journey, including the end-of-life and bereavement stages.
The backbone of CanKids PPCC is a holistic social support team. These include palliative care trained physicians, nurses, nursing aides, social workers, psychologists, a physiotherapist, a dietician, patient navigators and community health workers.
Jubilee is the head nurse at the PPCC. She says that pain management is crucial for a child with cancer. To ease pain, analgesics like Paracetamol or Ibuprofen are dispensed. However, if the pain is severe, based on doctors’ prescription children are administered morphine. CanKids has a morphine licence from the DCGI.
It is heart-rending when a child cries in excruciating pain, says Jubilee. The nurses have to be compassionate and caring particularly since most of the children at the centre are at the end-of-life stage.
Clinical psychologist Hiba, a colon cancer survivor herself, can well understand the emotional pain of families. She is a reassuring presence as she makes a round of the ward. She does first-line counselling, pre-and post-surgery counselling as well as tides families through when a child is under treatment like chemotherapy, or radiation, has a relapse or passes on. “We hold the hand of patients and caregivers from beginning to end and even after the treatment. We fulfil every wish of a child, be it for toys or anything else,” she says.
To enable a child to keep up with studies, there is a teacher. Vandana, who has been with CanKids for 19 years, keeps an eye on three young children seated around a small table. She gently encourages them to engage in colouring and counting.
While at the center, families also get free meals, and an ambulance facility to shuttle them to and from the hospital. When families opt to return home, they are equipped with medication for one month, air mattresses, wheelchairs and crutches or any other mobility aid. Once home they can stay in touch with the PPCC team through the 24x7 helpline and return to the centre if needed.
PPCC usually gets in patients from Bihar, Uttar Pradesh, West Bengal and Jharkhand. Families from Delhi by and large prefer to stay at home and use OPD facilities. The patients who come to the centre are by are by and large being treated at hospitals like AIIMS, Safdarjung Hospital, and Lok Nayak Jayprakash Hospital. Some come from private hospitals like Apollo Hospital, and Max Hospital. Most families are farmers or daily wagers.
PPCC functions in Delhi, NCR. But it has wider aims. The idea is that the centre functions as a model for the integration of palliative care, pain and symptom management with pediatric oncology treatment across over 142 pan-India partner hospitals known as CanKids Hospital Support Units (CHSUs).
With this objective in mind, CanKids conducts capacity-building workshops and conferences with nurses, doctors, pharmacists, surgeons, radiologists and other medical professionals engaged in pediatric oncology. The organization also collaborates with medical professionals, NGOs, and other key stakeholders to advocate for better policies for children with cancer, including the Right to Palliative Care.
In the long term, CanKids seeks to sensitize grassroots health workers about the need for palliative care and create referral pathways so that a child with cancer from a centre can access palliative care specialists anywhere. Among the other ideas in the offing are virtual support and relapse management for patients who have returned home.
Now PPCC is looking at relocation from Gautam Nagar to larger premises, says Dr Haresh Gupta, Chief Programme Officer-Medical and head of PPCC and Pediatric Cancer Research Institute (PCRI). The new location will enable CanKids to expand facilities for inpatients and outpatients, give a boost to day care, transition home and hospice, resource, learning & research.
A child is referred to the centre by treating doctors or CanKids social support teams at partner childhood cancer hospitals. Sometimes this could be even before diagnosis or treatment has begun. A child could also be there if symptoms flare up like fatigue, breathlessness, difficulty in swallowing, ulcer and loss of appetite. An important feature of the centre is psychological counselling for the child and the family throughout the cancer journey, including the end-of-life and bereavement stages.
The backbone of CanKids PPCC is a holistic social support team. These include palliative care trained physicians, nurses, nursing aides, social workers, psychologists, a physiotherapist, a dietician, patient navigators and community health workers.
Jubilee is the head nurse at the PPCC. She says that pain management is crucial for a child with cancer. To ease pain, analgesics like Paracetamol or Ibuprofen are dispensed. However, if the pain is severe, based on doctors’ prescription children are administered morphine. CanKids has a morphine licence from the DCGI.
It is heart-rending when a child cries in excruciating pain, says Jubilee. The nurses have to be compassionate and caring particularly since most of the children at the centre are at the end-of-life stage.
Clinical psychologist Hiba, a colon cancer survivor herself, can well understand the emotional pain of families. She is a reassuring presence as she makes a round of the ward. She does first-line counselling, pre-and post-surgery counselling as well as tides families through when a child is under treatment like chemotherapy, or radiation, has a relapse or passes on. “We hold the hand of patients and caregivers from beginning to end and even after the treatment. We fulfil every wish of a child, be it for toys or anything else,” she says.
To enable a child to keep up with studies, there is a teacher. Vandana, who has been with CanKids for 19 years, keeps an eye on three young children seated around a small table. She gently encourages them to engage in colouring and counting.
While at the center, families also get free meals, and an ambulance facility to shuttle them to and from the hospital. When families opt to return home, they are equipped with medication for one month, air mattresses, wheelchairs and crutches or any other mobility aid. Once home they can stay in touch with the PPCC team through the 24x7 helpline and return to the centre if needed.
PPCC usually gets in patients from Bihar, Uttar Pradesh, West Bengal and Jharkhand. Families from Delhi by and large prefer to stay at home and use OPD facilities. The patients who come to the centre are by are by and large being treated at hospitals like AIIMS, Safdarjung Hospital, and Lok Nayak Jayprakash Hospital. Some come from private hospitals like Apollo Hospital, and Max Hospital. Most families are farmers or daily wagers.
PPCC functions in Delhi, NCR. But it has wider aims. The idea is that the centre functions as a model for the integration of palliative care, pain and symptom management with pediatric oncology treatment across over 142 pan-India partner hospitals known as CanKids Hospital Support Units (CHSUs).
With this objective in mind, CanKids conducts capacity-building workshops and conferences with nurses, doctors, pharmacists, surgeons, radiologists and other medical professionals engaged in pediatric oncology. The organization also collaborates with medical professionals, NGOs, and other key stakeholders to advocate for better policies for children with cancer, including the Right to Palliative Care.
In the long term, CanKids seeks to sensitize grassroots health workers about the need for palliative care and create referral pathways so that a child with cancer from a centre can access palliative care specialists anywhere. Among the other ideas in the offing are virtual support and relapse management for patients who have returned home.
Now PPCC is looking at relocation from Gautam Nagar to larger premises, says Dr Haresh Gupta, Chief Programme Officer-Medical and head of PPCC and Pediatric Cancer Research Institute (PCRI). The new location will enable CanKids to expand facilities for inpatients and outpatients, give a boost to day care, transition home and hospice, resource, learning & research.
