• A home away from home for paediatric palliative care

Last week (29) saw a landmark event in holistic care in Sri Lanka with the formal opening of the  Indira Cancer Trust’s Suwa Arana, Sri Lanka’s first dedicated paediatric palliative care centre. To mark this occasion, The Sunday Morning Brunch spoke with Indira Cancer Trust Chairperson and Trustee Dr. Lanka Jayasuriya-Dissanayake about what it means to have such a palliative care centre for Sri Lankan children. 

The Indira Cancer Trust

Dr. Jayasuriya-Dissanayake who helped found the Indira Cancer Trust after losing her sister Indira Jayasuriya Dicker to breast cancer in 2016, shared with Brunch that part of why the Indira Cancer Trust was founded was because she had observed first-hand how important it was for not just patients to be supported when losing a loved one to an illness like cancer.

“When my sister was diagnosed and in her last stages, the care and concern we received as a family from the medical and support staff at the Apeksha Hospital allowed for a dignified and pain-free death. That one week in the hospital was very comforting for us as a family because of that support and we didn’t want any other family to have to go through this alone,” she said, noting that this was when she left her own job working with the World Health Organization on public health to be able to help form an organisation that could lend that kind of support to other families as well as do other things to help patients with cancer. 

In the seven intervening years, the Indira Cancer Trust has developed over 23 programmes that address other aspects of cancer diagnosis, from the psychological to financial and economical to even the cosmetic and social aspects of dealing with cancer. The trust’s goal is to mentally, physically, and emotionally uplift patients and their families. This past week has seen the trust take a huge step forward in that mission with the opening of Suwa Arana. 

Suwa Arana

As of 2020, approximately 750 children are diagnosed with cancer each year and this number is increasing. A cancer diagnosis not only affects the child concerned, but also their families, emotionally, physically, and financially. Almost all children diagnosed with cancer are treated at the Apeksha Hospital, Maharagama. A major difficulty faced by children diagnosed with cancer, and their families, is the need for long-term, often palliative care. 

Suwa Arana is a six-floor facility with 32 family rooms, a rooftop garden, and a ground floor for dining and recreation. It aims to create an ideal healing environment for children, families, and care providers. Each family room is designed for comfort, featuring ensuite bathrooms with disability access, sofas, cupboards, and beds. The ground floor includes a dining area and recreational space. 

The facility also offers a specialised kitchen for nutritious home-cooked meals. These meals are devised with the help of the Apeksha Hospital. The rooftop garden promotes healing through yoga, meditation, music, and art therapy. Additionally, Suwa Arana will also provide counselling services to help families cope with terminal diagnoses.

Suwa Arana was embarked on to provide holistic care for children from the moment of diagnosis, providing active total care of the child’s mind, body, and spirit, including multidisciplinary care for the child to give them their best chance at fighting their illness. The Suwa Arana concept is built on the idea that nothing else should matter to a family except the care of their child, especially things like where their next meal will come from and where they can lay their head.  

Dr. Jayauriya-Dissanayake shared that Suwa Arana was a green building with solar panels for electricity, rainwater harvesting facilities, and a focus on greenery and foliage across the building to promote connecting with nature. “The rooms are like hotel suites and we also have what we call rainbow rooms – rooms that can be connected to create larger rooms for when patients are in their final stages and family and extended family want to spend as much time with them as possible. We also have spaces for different healing therapies, from art to music, a healing garden, and a religious garden.”

The need for palliative care

The focus of palliative care is to make a patient who is terminal as comfortable as possible in their last days and also to support families as they say goodbye and come to terms with their loss. 

“The decision to come into palliative care solely rests on the people treating them,” Dr. Jayasuriya-Dissanayake explained, noting that with Suwa Arana, the paediatric consultants treating these children with cancer will be the ones to recommend palliative care and connect with Suwa Arana as a facility to provide that care.

What sets apart Suwa Arana as an important palliative care facility is that its services are entirely free, while it also provides a comfortable, dignified environment for a patient’s last days with room for emergency care. 

“With the majority of patients, parents would like to take their child home, but when you have patients from remote places, you do have parents who are scared to take them home where they may not be able to get access to treatment and care if something happens. Right now, children are kept in the ward at the Apeksha Hospital until they pass. Suwa Arana provides them with a home away from home. It’s not a hospital but more of a home setting where the family can also be comforted and prepare for their child’s passing with the reassurance of easy access to care in case of sudden emergency,” Dr. Jayasuriya-Dissanayake said. 

Reflecting on being able to open Suwa Arana (the initial date for opening was in February 2023, but this was not possible given the economic crisis), Dr. Jayasuriya-Dissanayake shared that she was immensely proud that the Indira Cancer Trust had been able to achieve this milestone and extended her thanks to two of the trust’s longest-standing partners, the SLMA North America Western Region and the St. Judes Children’s Research Hospital, US for their unwavering support through the years and all the donors who had made this ambitious project possible.