Hospital Escuela is the most important hospital in the country receiving more than 60% of the general population. Within its range of services, it has developed the paediatric palliative care programme since 2017, with home visits as the main tool for palliative care.
Since then it has visited dozens of children with multiple adversities to complete their therapy or treatment appropriately.
It is estimated that approximately 350 to 400 children are diagnosed with cancer each year in our country, of which 20% are expected to end up in palliative care, for multiple reasons that limit us as a country. Due to a large number of patients and the scarce personnel available, a multidisciplinary team has been formed, composed of: social workers, psychologists, nurses, doctors, motorists, administrators, and spiritual guides. All this is possible thanks to the support provided by the Secretary of Health and the Honduran Foundation for Children with Cancer. The comprehensive care team has used a fundamental tool to determine and follow the evolution of the patients: The modified Lansky Performance Scale to predict the functional status and quality of life of chronically ill children. It is a scale from 0 to 100, where higher scores indicate better functioning. According to our latest records, we have 111 children with cancer in palliative care in the national territory, of whom 26 children have been visited in 2024, some on more than one occasion.
Modified Lansky Scale
Green (100-80) Excellent or good functional ability: can participate in normal activities, play, education, without significant restrictions.
Yellow (70-50) Moderate functional ability, may require some assistance or adaptation in certain activities, but can still participate in most daily activities.
Red (40-0) Severely compromised functional ability, depending on the score, assistance may be constant or completely dependent to carry out basic life activities
Fundamental steps for the home visit:
- Conduct a telephone or office interview with the patient’s primary caregiver for information about the child’s activities and needs.
- Complete the monitoring form for patients with a yellow and red Lansky on each call made to identify additional/special needs and monitor for severity:
- Monitor calls from patients in green every 15 days or their periodic medical appointment depending on the main diagnosis.
- Monitor patient calls in yellow once a week, or make monthly appointments at the nearest hospital.
- Monitor patient calls in red 2 times per week and summon family caregivers for support and medication supply at the nearest hospital.
Note: Patients in the dying phase should be monitored daily.
Once the patient is classified in RED, a visit is scheduled as soon as possible bringing the team trained to attend to each of the needs that have been identified.
The team currently consists of Dr. Gerardo Castro, as attending physician, Laura Villalobos, Dany Coca, Dr. Bryan Aragón, and Nelson Ramírez. To evaluate the satisfaction of parents and primary caregivers of oncology patients in paediatric care at the Hospital Escuela, a research study was carried out in August 2023, which showed: Out of a total of 124 participants, high levels of satisfaction were observed. 83.9% of caregivers described their satisfaction with their children’s care. 83.9% of caregivers described the quality of care received as “excellent”. 92.7% considered that the health personnel were able to communicate in clear terms. 100% felt supported and listened to. In addition, 100% stated that they felt that their decisions were respected. The area of residence (rural vs. urban) was associated with less ease of access to palliative care (p<0.001; OR 10.7; 95%CI 3.830.2).
Suggestions and points for improvement according to caregivers included: “the possibility of ‘more home visits’, ‘transportation support for appointments’, ‘giving priority to caregivers with oncology patients when attending hospitals’ and ‘more frequent appointments’. It is recommended to implement new approaches to care, request for supplies, and medical staff, nurses, psychologists and social workers trained in palliative care.
We hope to strengthen the palliative care programme in the near future to be able to reach all children in need regardless of diagnosis, condition, or economic level.
We know that the need is great and the challenge is greater, we are missing many children’s visits, but we will trace the path to follow so that in the near future we will be able to visit all the children who unfortunately are losing their battle.
This aricle was published with permission form Notas Paliativas www.paliativossinfronteras.org.
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