Keywords
palliative care - global - children
Introduction
In general, when the term “Palliative Care” is heard, the thought is usually focused
on cancer patients, patients with a noncurable disease, or those on their deathbed.
When this term is used for a child, the impact is more dramatic.
Globally, there is an enormous need to help, prevent, and relieve unnecessary suffering
worldwide by reducing the disparity in access to pediatric palliative care (PC) and
pain control. Around 78% of people in need of PC live in developing countries. Here,
continued access to essential supportive medicines for pain control is not available.
PC is globally recognized as a legitimate component of healthcare. It effectively
improves the quality of life (QoL) of adults and children and should be a central
feature of all good clinical practices.[1]
Remarkably, 6% of the requirements of PC are for children under 15 years old. This
is a global concern as 27% of the world population is under the age of 15. In most
parts of the world, it has been estimated that ∼7 million children around the world
will need children palliative care (CPC) each year. CPC has a poor profile and often
it is inaccessible to those who need it.[2]
[3]
[4]
Discussion
Historically, when we analyze the evolution of the concept of PC, until 1980, the
World Health Organization (WHO) did not officially incorporate the concept of PC as
a part of the “Cancer Control” program. Fifteen years later, in 1995, the Pan American
Health Organization also officially incorporated it into its assistance programs.
It is essential to observe that these approaches focused solely and exclusively on
patients with malignancies. In 2002, the WHO published a proper definition of this
concept: active and comprehensive care of patients whose disease does not respond
to curative therapies. Without a doubt, an advancement and increase in accessibility
of the approach were observed; but in reality, institutions and clinical teams still
continue to limit palliative care to noncurable and terminal patients.[5]
Over time, acceptance to consider dialogue between the different stakeholders like
clinical caregivers (palliativists, algologists, psychologists, nursing team members),
social workers, health administrators, health authorities; interdisciplinary analysis
of applicability of PC in different regional settings; and the scope of PC were expanded.
Currently, the WHO understands PC as the comprehensive approach that improves the
QoL of patients and families that face diseases associated with life-threatening conditions
through the prevention and relief of suffering, the early identification of stressful
symptoms, the impeccable evaluation as well as treatment of pain with other physical,
spiritual, and psychological problems.[6]
In 2014, the first global resolution on PC was issued, urging WHO and all member states
to improve access to PC as a central component of health systems emphasizing on primary
health care. The WHO recommended strengthening PC programs by:
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Integration into all relevant global disease control plans and health systems.
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Develop guidelines and tools to be integrated into all disease groups and levels of
care for addressing ethical issues related to comprehensive PC.
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Improving access to pain and symptom management medications.
-
Promote greater access for children (in collaboration with UNICEF).
-
Direct financial resources to develop programs and research on the topic, especially
in countries with limited resources.
However, healthcare professionals, including pediatricians around the world, despite
its importance and benefits, find several significant barriers for the early integration
of PC in the disease trajectory. Healthcare providers often find it challenging to
provide proper support due to barriers such as prognostic uncertainty; time constraints;
discomfort of healthcare staff in providing PC; lack of knowledge, experience, and
team support.[7]
[8]
[9]
Palliative support begins when a life-threatening illness is reported and continues
throughout the disease regardless of whether the treatment goal is curative or noncurative.
It is essential for the management of chronic and severe conditions. It is imperative
to emphasize that PC is no longer only advised for terminally ill patients; it can
also be offered as support and as a complement to all patients with the intent of
curative treatment.
Global Challenges in Numbers
Global Challenges in Numbers
It's important to highlight that most children (78%) in need of PC live in low- and
middle-income countries.[10] In addition, Latin America has one of the highest percentages of children in need
of oncologic, pediatric, and PC.[11]
[12]
Forty million people need PC yearly. Out of these, 20 million need PC at the end of
their lives; 18 million die in pain due to lack of access to required pain medications;
78% of those who need it live in low-and- middle-income countries; 69% of patients
who need it are people over 60 years old; 6% of the requirements are for minors aged
under 15 years old. Fifty-five billion people do not have adequate access to pain
medication. Only in 8.5% (20 countries) PC is integrated into health systems; more
than a third of the world (42%) does not have access to PC. Only in 14% countries,
terminally-ill patients had their PC needs met.[13]
Local Pediatric Palliative Care Experience in Dominican Republic
Local Pediatric Palliative Care Experience in Dominican Republic
There are four leading entities for which a child can and should receive pediatric
palliative care: Cancer, cystic fibrosis, progressive metabolic, and neurological
disorders. In January 2012, in the Dominican Republic, the first palliative program
with an oncopediatric approach in the country was created in the Onco-Hematology Unit
of the Dr. Robert Reid Cabral Children's Hospital, the largest tertiary childcare
center in the country. So far, specialized care has been provided with exclusive attention
to terminal patients, palliative interventions for clinical and psycho-socio-emotional
stressing situations, as well as palliative-oncological follow-ups with outpatient
consults. These consults focused on topics such as refractory disease to the first-
or second-line treatment, metastatic disease with added psychosocial danger factors,
or recurrent disease with a nonviable curative therapeutic option, among others.[14]
[15]
In the Dominican Republic, various barriers have been identified in the implementation
of PC such as over demand for services, lack of health insurance coverage mainly among
the most vulnerable sectors of society, even more so with catastrophic illnesses,
the increase in migration over the past years, the absence of hospice care, and limited
access to high-cost medications such as opioids. In educational terms, it is important
to highlight the absence of formal local education and the low interest of clinical
teams in the applicability of palliative support due to taboo concepts, misinformation,
and fear of the use of opioid drugs.
The Oncology Unit of the Dr. Robert Reid Cabral Children's Hospital has been characterized
as offering holistic support and a palliative approach to all children diagnosed with
cancer. These children benefit from comprehensive care and symptom management, which
has a “zero tolerance to pain” policy through interventions guided by “WHO international
therapeutic guidelines” and protocols adapted to local needs of available drugs including
the rational and responsible use of opioids. This vision and project have also been
started at National Cancer Institute Rosa Emilia Sánchez Pérez de Tavares since 2016.[15]
Conclusion
Undoubtedly, PC for children is growing around the world; all regions have been developing
and advocating for CPC services, recognizing them as a fundamental human right. A
lack of CPC availability for children is not acceptable.
Countries should continue learning from each other for improvement, such as the timely
referral, appropriate pain management, and end-of-life interventions for a child,
creating a pediatric hospice, and improving the follow-up sessions for the bereaved
family. There is a need to continue to strive for access to quality PC for children
worldwide as well as support and empower those working to provide quality CPC services.
Neither children nor their parents should face the disjunctive of choosing a curative
or palliative perspective; they should obtain both approaches concomitantly. Ministries
of health, hospitals, healthcare institutions, principally from low- and middle-income
countries, should integrate PC into the regular health approach of pediatric patients
in sustainable ways, by strengthening healthcare systems, providing financial protection,
and contributing to universal health coverage. All these steps are necessary to ensure
that all children have access to these services when they need it; through advocacy
this can become real. It is time to offer children access to a better quality of life
globally.
