World Hospice and Palliative Care Day:
IAPC’s Special Feature on
Paediatric Palliative Care-5
The primary aim of Paediatric Palliative Care is to allow the child to grow and develop through childhood in the face of a serious illness. Pediatric palliative care teams support the child and family caregivers (including the siblings) to not only cope with the challenges of illness and hospitalizations by relieving the symptoms of the disease and the side effects of treatments, but also provisions for the necessary resources to be available for the child, either at home or somewhere close to home.
A pediatric palliative care team therefore extends help whenever and wherever needed; whether in the hospital, at home or in the community.
Kidwai Memorial Institute of Oncology (KMIO) has been treating paediatric oncology patients for several years now. An average 75-100 paediatric cases are being admitted for treatment, per quarter. We share with you below, a few issues we noticed while caring for and treating our paediatric patients along with the various strategies we adopted to address the same.
- Parental Counselling:
Parents need to be explained and counselled regarding the diagnosis and details of the diseases, the treatment plans, the prognosis, the risk factors associated with the disease, the outcome, the co-morbidities, and any other additional modalities of treatment that may be required. Our team of well trained professionals also address the parents’ initial reactions of shock, denial, disbelief and other outbursts of emotions. If needed, these parents are referred to the psycho-oncology team for specialist services.
- Arrangements for the parents’ stay:
Most families come from rural areas which are far away from the treating hospital. Since the treatment takes a minimum of 6 months to a year, it is very challenging for families to find accommodation and make the necessary arrangements. In an effort to address this need, KMIO houses two Dharmashalas which provides accommodation facilities for such families at minimal cost.
- Out of pocket expenditures:
At KMIO, the treatment for all paediatric patients is provided free of cost. However, certain circumstances force the parents to incur costs when they have to procure certain drugs or certain blood components from private pharmacies / blood banks when unavailable at the hospital. We coordinate with various NGOs to provide financial support to families in such situations.
- Sibling Care:
Most children would have one or more siblings and are often separated from them during the course of the treatment. More often than not, this leads to depression in the child patient. We provide counselling and recommend the sibling to visit the child patient. On some occasions, especially during festivals, we also allow the child to visit their home.
- Pain and other symptom management:
Less than 5% of children complain of pain and other symptoms; which are well managed with medications. In case of severe pain, the child is referred to the Palliative Care department for Oral Morphine.
- Loss of Job for a parent:
With both parents being made to stay back during the course of the child’s treatment, parents end up losing jobs which leads to an increased financial burden for the family. We network with certain NGOs to arrange for temporary jobs for the parents.
- Break in education for the child:
Discontinuation of schooling due to long term hospital admission and treatment has been accepted by parents. Certain NGOs in KMIO like the Samiksha Foundation, have been very supportive by introducing a program to continue education at the hospital premises with the support of volunteers.
- Far away from home syndrome:
Children often miss their home and their homely environment and neighbourhoods, due to long stays at the hospital. The child is usually not sent back to avoid the risk of infection as they are immuno-compromised. Recreational fun programs are conducted very often at KMIO to keep the child busy, while counselling services helps the child to tide over this issue to a large extent.
- Provisioning food as per their culture:
Catering to the food preferences for patients from different states, far and wide brings with it associated challenges. For instance, a patient from West Bengal has a different food palate when compared to the free food offered to our patients which is primarily of local cuisine. Restrictions to bring-in food from outside the hospital premises, also adds to the woes of the patient’s and their families. We are currently trying our best to accommodate offering this variety in food services.
- Restricted play areas within the hospital:
Hospitals may not have big play areas to accommodate many children. Patients will have to manage in smaller areas which often does not help in the child’s growth and development. We therefore worked with our architectural and interior designing team to ensure that the available space in the Peadiatric unit is made appealing for the child and the parent to facilitate prompt treatment and good compliance. We also ensure that attention is paid to provide the much needed recreational programs to overcome boredom and prevent homesickness.
In addition to the above mentioned, it is also important to ensure that the below pointers are kept in mind while planning to establish a paediatric palliative care oncology set up.
- Ensure all relevant practical issues are factored in and addressed in the stage of planning itself
- Ensure that the psycho-oncologists are integrated within the teams
- Leverage the liasoning role of the volunteer between the physician, the child and the parents
- Actively use Art Therapy as a tool to capture and comprehend the child’s emotions
- Celebrate festivals like Janmashtami, Christmas, Diwali etc. with the children and their families while they are at the hospital to help them deal with the cultural loss
Offering Paediatric Palliative Care services may seem like a daunting and challenging task; however, quality care can most certainly be rendered with the support and cooperation from well aligned teams and NGOs.
Acknowledgement: This article has been compiled with the help of Dr. Arun Kumar, Head of Peadiatric Oncology, and the team members of the Palliative Care Department.