Integrating palliative care in pediatrics (original) (raw)
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Pediatric Palliative, End-of-Life, and Bereavement Care
Pediatric Clinics of North America, 2005
Each year in the United States, approximately 50,000 children die, mostly in hospitals, and many more confront life-threatening conditions. Most-if not allof these children and their families would benefit from timely, comprehensive, compassionate, continuous, and developmentally appropriate supportive care services, including a mixture of palliative, end-of-life, and bereavement care. Palliative care aims to relieve suffering and improve quality of life for patients with advanced illnesses and their families. Effective palliative care includes communicating with patients and family members, managing pain and other symptoms, providing psychosocial, spiritual, and bereavement support, and 0031-3955/05/$ -see front matter D
Research in Advancing Pediatric Palliative Care
Home Healthcare Nurse, 2012
Approximately 53,000 children die each year in the United States and more than 400,000 are living with life-threatening or life-limiting illnesses. Many providers lack the education and resources needed to provide safe, quality pediatric palliative care. Optimally, services should be provided by an interdisciplinary team that would support the medical, psychosocial, spiritual, educational, and emotional needs of families and children with life-limiting illnesses. Below are summaries of 4 published research articles related to pediatric palliative care that describe some of the ongoing barriers in this area and innovative programs working toward reaching more people in need of these services. The 1st article addresses the important role nurses can play by facilitating palliative care communication and supporting the shift to early palliative care. The 2nd research study profiled in this article explores barriers to palliative care experienced by healthcare providers. The 3rd article identifies 4 countries with innovative pediatric palliative care programs and strategies these programs used to overcome some of the challenges they encountered. The 4th article features a successful state-funded pediatric palliative program in Massachusetts. Readers are encouraged to read the full articles to learn more about the studies and the palliative care programs briefly described here.
New and Lingering Controversies in Pediatric End-of-Life Care
PEDIATRICS, 2005
Professional societies, ethics institutes, and the courts have recommended principles to guide the care of children with life-threatening conditions; however, little is known about the degree to which pediatric care providers are aware of or in agreement with these guidelines. The study's objectives were to determine the extent to which physicians and nurses in critical care, hematology/oncology, and other subspecialties are in agreement with one another and with widely published ethical recommendations regarding the withholding and withdrawing of life support, the provision of adequate analgesia, and the role of parents in end-of-life decision-making. Three children's hospitals and 4 general hospitals with PICUs in eastern, southwestern, and southern parts of the United States were surveyed. This population-based sample was composed of attending physicians, house officers, and nurses who cared for children (age: 1 month to 18 years) with life-threatening conditions in PICUs or in medical, surgical, or hematology/oncology units, floors, or departments. Main outcome measures included concerns of conscience, knowledge and beliefs, awareness of published guidelines, and agreement or disagreement with guidelines. A total of 781 clinicians were sampled, including 209 attending physicians, 116 house officers, and 456 nurses. The overall response rate was 64%. Fifty-four percent of house officers and substantial proportions of attending physicians and nurses reported, "At times, I have acted against my conscience in providing treatment to children in my care." For example, 38% of critical care attending physicians and 25% of hematology/oncology attending physicians expressed these concerns, whereas 48% of critical care nurses and 38% of hematology/oncology nurses did so. Across specialties, approximately 20 times as many nurses, 15 times as many house officers, and 10 times as many attending physicians agreed with the statement, "Sometimes I feel we are saving children who should not be saved," as agreed with the statement, "Sometimes I feel we give up on children too soon." However, hematology/oncology attending physicians (31%) were less likely than critical care (56%) and other subspecialty (66%) attending physicians to report, "Sometimes I feel the treatments I offer children are overly burdensome." Many respondents held views that diverged widely from published recommendations. Despite a lack of awareness of key guidelines, across subspecialties the vast majority of attending physicians (range: 92-98%, depending on specialty) and nurses (range: 83-85%) rated themselves as somewhat to very knowledgeable regarding ethical issues. There is a need for more hospital-based ethics education and more interdisciplinary and cross-subspecialty discussion of inherently complex and stressful pediatric end-of-life cases. Education should focus on establishing appropriate goals of care, as well as on pain management, medically supplied nutrition and hydration, and the appropriate use of paralytic agents. More research is needed on clinicians' regard for the dead-donor rule.
Bol Med Hosp Infant …, 2010
In this paper we discuss different aspects of palliative care in pediatrics and how the definition has changed and evolved. We also define what a terminally ill patient is, list the objectives of care, and how to implement care practices. We describe different ways to diminish physical, social, emotional and spiritual suffering. The dying process is described according to the different stages of child development. The spiritual aspects are now considered an important part of the approach with children. We must keep in mind the different barriers that we may encounter when we initiate palliative care. Education and further research is still needed to improve care and to achieve better results.
Infant and Child Deaths in Acute Care Settings: Implications for Palliative Care
Journal of Palliative Medicine, 2007
Objectives: Despite 56% of child deaths occurring in inpatient hospital settings, who these children are and how they die has not been fully described. The purpose of this study was to identify the characteristics of those infants and children who die in acute care settings, and describe the extent to which palliative care was used prior to their deaths.
Death Studies, 1993
Childhood diseases requiring palliative care differ from those of adults; they are usually rare and familial and are either life-limiting or life threatening. Life-limiting illness is defined as a condition where premature death is usual, for example Duchene muscular dystrophy. Life-threatening illness is one where there is a high probability of premature death due to severe illness, but there is also a chance of long-term survival to adulthood, for example children receiving cancer treatment. It is important to draw a distinction between 'palliative' and 'terminal' care. 'Terminal care' refers to the care of the patient and family during the period when death is imminent (weeks, days, hours). Palliative Care is not terminal care but includes end-of-life care (EAPC Taskforce, 2007). This misunderstanding seriously conditions eligibility criteria, specific needs and the way services are offered, particularly in the pediatric sector. 2.1 Spectrum of illness Four different categories of childhood diseases have been identified (Aldrich, 1995): Group 1 Life-threatening conditions for which curative treatment may be feasible, but can fail (for example, cancer, organ failure of heart, liver or kidney, infections) Group 2 Conditions requiring long periods of intensive treatment aimed at prolonging life, but where premature death is still possible (for example, cystic fibrosis, HIV/AIDS, cardiovascular anomalies, extreme prematurity) Group 3 Progressive conditions without curative options, where treatment is palliative after diagnosis (for example, neuromuscular or neurodegenerative disorders, progressive metabolic disorders, chromosomal abnormalities, advanced metastatic cancer on first presentation) Group 4 Irreversible, non-progressive conditions with severe disability causing extreme vulnerability to health complications (for example, severe cerebral palsy, genetic disorders, congenital malformations, prematurity, brain or spinal cord injury) How to reference In order to correctly reference this scholarly work, feel free to copy and paste the following:
Pediatric End-of-Life Issues and Palliative Care
Clinical Pediatric Emergency Medicine, 2007
Optimizing the quality of medical care at the end of life has achieved national status as an important health care goal. Palliative care, a comprehensive approach to treating the physical, psychosocial and spiritual needs of patients and their families facing life-limiting illnesses, requires the coordinated efforts of a multidisciplinary group of caregivers. Understanding the basic principles of palliative care can aid emergency department staff in identifying patients who could benefit from palliative care services and in managing the challenging situations that arise when such patients present to the hospital for care.
Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations
PEDIATRICS, 2013
Pediatric palliative care and pediatric hospice care (PPC-PHC) are often essential aspects of medical care for patients who have life-threatening conditions or need end-of-life care. PPC-PHC aims to relieve suffering, improve quality of life, facilitate informed decision-making, and assist in care coordination between clinicians and across sites of care. Core commitments of PPC-PHC include being patient centered and family engaged; respecting and partnering with patients and families; pursuing care that is high quality, readily accessible, and equitable; providing care across the age spectrum and life span, integrated into the continuum of care; ensuring that all clinicians can provide basic palliative care and consult PPC-PHC specialists in a timely manner; and improving care through research and quality improvement efforts. PPC-PHC guidelines and recommendations include ensuring that all large health care organizations serving children with life-threatening conditions have dedicated interdisciplinary PPC-PHC teams, which should develop collaborative relationships between hospital-and community-based teams; that PPC-PHC be provided as integrated multimodal care and practiced as a cornerstone of patient safety and quality for patients with life-threatening conditions; that PPC-PHC teams should facilitate clear, compassionate, and forthright discussions about medical issues and the goals of care and support families, siblings, and health care staff; that PPC-PHC be part of all pediatric education and training curricula, be an active area of research and quality improvement, and exemplify the highest ethical standards; and that PPC-PHC services be supported by financial and regulatory arrangements to ensure access to high-quality PPC-PHC by all patients with life-threatening and life-shortening diseases. Pediatrics 2013;132:966-972