Quality Indicators in Pediatric Palliative Care: Considerations for Latin America
Abstract
:1. Introduction
2. Contextual Factors That Influence PPC Development in LA
2.1. Palliative Care Philosophy
2.2. Healthcare Structure
2.3. Palliative Care Providers
2.4. Laws and Regulations in Palliative Care
3. Challenges of Implementing PPC Quality Indicators
3.1. Lack of Consensus
3.2. Heterogenicity in PPC Patients
3.3. Selective Focus of the PPC Literature
4. Pathway towards Developing Quality Indicators for PPC in LA
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Available Resources | Achievable Standards of Care | Description of Quality Indicators |
---|---|---|
Perinatal and PPC 1 champion or specialist | Child’s quality of life | Offers specialized pain and symptom management to achieve comfort and minimize total pain and suffering. |
Offers age-appropriate care during all disease stages. | ||
Uses patient-reported outcomes to guide care (when possible). | ||
Offers services to children with life-limiting and life-threatening conditions, which includes chronic-complex conditions, cancer and perinatal diagnosis. | ||
Family Support | Offers family-centered care by supporting the family unit. | |
Helps families identify their goals. | ||
Encourages parents to be part of the care of the child. | ||
Communication | Offers clear and honest information to the child and family. | |
Ensures communication with other healthcare providers who follow the patient. | ||
Advanced care planning | Promotes shared decision-making. | |
Involves patients and families in developing treatment goals and plans. | ||
Helps families in difficult decision-making, including end-of-life care plans. | ||
End-of-life care | Provides care for the imminently dying patient. | |
Assures that the intensity of treatment is in accordance with the goals of care and the child’s best interest. | ||
Helps families prepare for the death of the child. | ||
Referrals | Provides information about emotional and psychosocial support and how to access it. | |
Provides information on bereavement support and how to access it. | ||
Education | Offers education to the family. | |
Offers education to other healthcare professionals. | ||
Specialized PPC team (it may include a combination of physicians, nursing, social worker, mental health specialist, child life specialist, spiritual support, grief counselling and other allied health professionals) | Holistic support | Offers multidisciplinary assessment and support of patient and family needs. |
Offers support to siblings and extended family. | ||
Offers psychological support to patient and family. | ||
Offers social support for patient and family. | ||
Offers spiritual support for patient and family. | ||
Offers expressive therapies including art, music, play and massage. | ||
Coordination of care | Designates a keyworker to the patient and family who leads and coordinates the care. | |
Offers flexible delivery of care across settings to ensure continuity of care. | ||
Grief and bereavement support | Offers grief support before, during and after death. | |
Offers continuing bereavement support for families during their grief process. | ||
Offers active grief support of siblings and extended family. | ||
Helps families make funeral arrangements. | ||
Availability | Offers access to PPC 24 h a day, seven days a week, 365 days a year. | |
Healthcare professionals support | Promotes continuous training and self-care for all team members. | |
Supports other healthcare professionals. | ||
Community healthcare providers with PPC knowledge | Community provision of PPC | Provides palliative care and follow-up at home. |
Provides end-of-life care at home for families who desire it. | ||
Offers a seamless transition between the hospital and home. | ||
Hospice | Respite | Offers respite for care providers to obtain brakes. |
End-of-life care | Offers end-of-life care outside of the hospital and in the community other than at home. | |
National Council, Association or College | Advocacy | Active lobbying for PPC development. |
Advocates for the compliance of laws and regulations. | ||
Research and publications | Development of national guidelines, standards or norms. | |
Encourages local PPC providers to engage in research and academic activities. | ||
Education | Endorses perinatal and PPC training programs. | |
Regulation | Assesses performance to ensure the quality of care provision. | |
Regulates the professional activities of PPC providers. | ||
Collaboration | Creates a network that fosters collaboration between PPC providers. | |
Creates partnerships between PPC and other specialties. | ||
Engages with international palliative care associations. | ||
Health system | National law | Existence of law that protects PPC practice and recognizes specific pediatric needs in palliative care. |
Equity | Inclusive and equitable access to PPC across settings and institutions. | |
Existence of specific pediatric formulations available in the national essential medicine list. | ||
Funding | Funding of palliative care services. | |
Assessment of healthcare utilization and costs. | ||
Offer financial support to families with PPC needs. |
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Zuniga-Villanueva, G.; Ramos-Guerrero, J.A.; Osio-Saldaña, M.; Casas, J.A.; Marston, J.; Okhuysen-Cawley, R. Quality Indicators in Pediatric Palliative Care: Considerations for Latin America. Children 2021, 8, 250. https://doi.org/10.3390/children8030250
Zuniga-Villanueva G, Ramos-Guerrero JA, Osio-Saldaña M, Casas JA, Marston J, Okhuysen-Cawley R. Quality Indicators in Pediatric Palliative Care: Considerations for Latin America. Children. 2021; 8(3):250. https://doi.org/10.3390/children8030250
Chicago/Turabian StyleZuniga-Villanueva, Gregorio, Jorge Alberto Ramos-Guerrero, Monica Osio-Saldaña, Jessica A. Casas, Joan Marston, and Regina Okhuysen-Cawley. 2021. "Quality Indicators in Pediatric Palliative Care: Considerations for Latin America" Children 8, no. 3: 250. https://doi.org/10.3390/children8030250