Written by: Dr. Raymond Cruz
“The purpose of pediatric palliative care is to enhance the quality of life of children and their families when facing life-limiting or life-threatening illnesses.”
It is estimated that 8 million children are in need of specialized palliative care.
One of the most challenging aspects of palliative medicine involves the care of children with chronic, life-threatening illness. It is estimated that 8 million children are in need of specialized palliative care. Finding ways to measure the success of caring for children with cancer, for example, is a huge challenge. How effective will a palliative care approach be for children, who have so much ahead of them in terms of potential?
How effective will a palliative care approach be for children, who have so much ahead of them in terms of potential?
There is currently little evidence of the effectiveness of PPC because it is difficult to define appropriate outcome measures in this field. Some people say that for children, measuring the quality of life should not be a priority. The truth is there is probably no ideal outcome in this case.
Symptoms such as pain, fatigue, depression, and observable physical symptoms, such as nausea and vomiting, are important aspects to be assessed. Other aspects, such as the ability to cope with illness, the spiritual dimension, and satisfaction with life must also be addressed.
Outcome measures in pediatric palliative care seldom involve the perspectives of the children, which is an eye-opener for all of us. No matter the age, we must ask these young ones about their most pressing concerns and make decisions based on their wishes and aspirations. Researchers argue that participating in interviews may be burdensome for children facing life-limiting conditions, but every effort must be done to obtain their view of illness and death.
No matter the age, we must ask these young ones about their most pressing concerns and make decisions based on their wishes and aspirations.
If the management of the disease is adapted to their cognitive and physical conditions, children would value the act of participating in their treatment. When children are involved in decision-making, treatment can become more successful. It also satisfies the parents, knowing that what is happening is what their child desires.
Whether at home or in a hospital, pediatric palliative care interventions should ideally involve interdisciplinary teams composed of nurses, physicians, psychologists, and social workers. Interdisciplinary teams are important because the aim is to promote quality of life not only for a child but also for the whole family.
Another challenge is related to the choice of specific (disease-specific, such as cancer) versus generic approaches to care. There will also be differences in terms of a patient’s state of mind – depression or anxiety may alter treatment regimens. Because each patient and each family will have different characteristics, those involved in the process must be alert to external cues when the approach seems to be ineffective.
We may not alter the events that lead to eventual deterioration and death, but with proper care, we can lessen the impact of illness and enable those who will be left behind to move on from their trials and tribulations.
A lack of education and training are common reasons leading to the poor implementation of treatment plans. It is important that health care professionals get involved as early as possible in order to improve outcomes. This is the reason why The Ruth Foundation invests in the education and training of its staff, and also helps in providing exposure to volunteers and students in palliative care. We may not alter the events that lead to eventual deterioration and death, but with proper care, we can lessen the impact of illness and enable those who will be left behind to move on from their trials and tribulations.
REFERENCES
Connor SR, Downing J,Marston J. Estimating the global need for palliative care for children: a cross-sectional analysis. J Pain Symptom Manage. 2017;53(2):171–177
Araújo J, Dourado M, Ferreira PL. Measuring instruments of the quality of life pediatric palliative care. Acta Med Port. 2015;28(4):501–512
Silva N, Crespo C, Carona C, Bullinger M, Canavarro MC. Why the (dis)agreement? Family context and child-parent perspectives on health-related quality of life and psychological problems in paediatric asthma. Child Care Health Dev. 2015;41(1):112–121
Conte T, Mitton C, Trenaman LM, Chavoshi N, Siden H. Effect of pediatric palliative care programs on health care resource utilization and costs among children with life-threatening conditions: a systematic review of comparative studies. CMAJ Open. 2015;3(1):E68–E75