The words “pediatric palliative care” strike fear in many healthcare providers. Picturing children and their families suffering can be so overwhelming that it becomes a barrier to truly understanding the good things that come from the provision of pediatric palliative care.
What if we view pediatric care through a different lens by focusing on the comfort and compassionate care that we can provide, alleviating children’s pain and suffering while giving families much-needed relief?
A fundamental understanding of pediatric palliative care services is the first step to envisioning ourselves as pediatric palliative care providers.
The Fundamentals of Pediatric Palliative Care
Education and understanding of how pediatric patients are identified as needing palliative care is the first step for providers to see how important the provision of quality pediatric palliative care is for the child, their family and the healthcare industry.
Pediatric palliative care includes the care of seriously ill children that range in age from perinatal to late adolescence.
According to the National Hospice and Palliative Care Organization’s Standards of Practice for Pediatric Palliative Care, the diagnostic categories that children who benefit from pediatric palliative care services include:
- Life-threatening conditions where curative treatment is likely to fail;
- Conditions where early death is likely;
- Diseases that have no curative treatment and will affect the child for many years; and
- Irreversible conditions that include complex healthcare needs likely to result in premature death.
These are not easy issues to think about, but with a better understanding of pediatric illnesses that may require palliative care, the next step is for providers to recognize how palliative care and pediatric palliative care differ.
The Differences Between Palliative Care and Pediatric Palliative Care
Both palliative care and pediatric palliative care are focused on eliminating suffering, improving the quality of life and providing emotional support for patients.
The palliative care interdisciplinary team works together with the participation of the patient and their family to identify and eliminate suffering when possible, or to decrease the patient’s suffering to the greatest extent possible.
The team caring for the pediatric palliative care patient is much larger, as it includes the provision of care and support for the family unit. The pediatric palliative care team is focused on supporting and eliminating the suffering of the patient, parents, siblings and other close family members.
This requires a much larger care team that may include multiple specialists, mental health providers, spiritual counselors, teachers and other school faculty members to work with the palliative care team to provide support for the family unit.
The members of the pediatric palliative care team are as numerous and unique as the children who need this care.
The Intersection of Palliative Care Patients
The needs of the adult and pediatric palliative care patients intersect at points that are fundamental to the human spirt.
In the Hospice and Palliative Care Nurses Association Manual for Pediatric Palliative Care, these points include the need to:
- Have physical care
- Have love
- Have choices
- Be treated with honesty
- Be themselves
- Have dignity
- Be able to use remaining time
- Have communication
- Still have hopes and goals
Although these points are relevant to both adults and children, their meanings to the pediatric palliative care patient may be much different than those of an adult receiving palliative care. Needs adults may take for granted, like choice, dignity, hopes and goals, are things pediatric patients may just be learning.
The subtle differences around life experience and time make a difference when the interdisciplinary team is caring for a pediatric patient. While the child may have a serious or life-limiting illness, they still have much to learn about life, hope and compassion.
A professional, compassionate and engaged interdisciplinary team can work to alleviate the pediatric palliative care patient’s suffering as they walk alongside the child. Both will learn some of life’s most beautiful lessons.
Axxess Hospice is a cloud-based hospice software that includes a palliative care workflow made by hospice experts for hospice professionals to provide exceptional care for patients during this fragile time.
