The Pediatric Palliative Improvement Network: a national healthcare learning collaborative
collaborative; healthcare learning network; palliative care; pediatric hospice care; pediatric palliative care; quality; quality improvement
BACKGROUND: Although multiple national organizations have created consensus guidelines and metrics for pediatric palliative care (PPC), standardized implementation and measurement has been challenging. In 2016, 6 PPC physician-experts in program development and quality improvement (QI) formed a healthcare learning collaborative network entitled the Pediatric Palliative Improvement Network (PPIN). MEASURES AND INTERVENTIONS: The primary drivers identified were 1) Feasibility of a national learning network demonstrated through the completion of one small QI project, 2) Standard education in QI methodology and 3) Salient pediatric palliative care operational, clinical and satisfaction metrics clearly defined. OUTCOMES: PPIN now includes146 members representing 51 organizations. In 2019 the group completed a national collaborative QI project focused on pain assessment at the time of initial consult, demonstrating a national increase in pain assessment from 75.8% to >90% over 12 months. PPIN has hosted two national QI workshops training more than 50 PPC clinicians in QI, with a 2-hour webinar provided in 2020 due to COVID. Monthly calls since 2017 provide QI methods "refreshers", share local works in progress, and provide infrastructure for future collaborative projects. CONCLUSIONS: PPIN has become a sustainable organization which improves the quality of PPC through focus on national QI methods training, successful collaborative projects, and the creation of a learning and peer support community with regular calls. With the advent of the Palliative Care Quality Collaborative in 2020, PPIN provides critical educational and organizational infrastructure to inform ongoing quality efforts in PPC, now and in the future.
Thienprayoon R; Jones E; Humphrey L; Ragsdale L; Williams C; Klick JC
Journal of Pain and Symptom Management
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2021.06.020" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.06.020</a>
Pediatric Palliative Care Programs in US Hospitals
children; life-limiting illness; palliative care programs; Pediatric palliative care; USA
BACKGROUND AND OBJECTIVES: Pediatric palliative care (PPC) is integral to the care of children living with serious illnesses. Despite the growth in the number of established palliative care programs over the past decade, little is known about the current operational features of PPC programs across the country. METHODS: The National Palliative Care Registry collects annualized data on palliative care programs' structures, processes, and staffing. Using data from the 2018 registry survey, we report on the operational features of inpatient PPC programs across the United States. RESULTS: Fifty-four inpatient PPC programs submitted data about their operations. Programs reported a median of 3.8 full-time equivalent staff per 10 000 hospital admissions (range 0.7-12.1) across the core interdisciplinary team, yet few (37%) met the minimum standards of practice for staffing. Programs provided more annual consults if they were longer-standing, had more interdisciplinary full-time equivalent staff, offered 24/7 availability for patients and families, or were at larger hospitals. The majority of programs reported concern for burnout (63%) and an inability to meet clinical demand with available staffing (60%). CONCLUSIONS: There is considerable variability in PPC program operations and structure in hospitals. This study affirms the need for updated program standards and guidelines, as well as research that describes how different care delivery models impact outcomes for patients, families, staff, and health care systems. Future studies that further define the clinical demand, workload, and sustainability challenges of PPC programs are necessary to foster the provision of high-quality PPC and maintain a vital clinical workforce.
Rogers MM; Friebert S; Williams C; Humphrey L; Thienprayoon R; Klick JC
Pediatrics
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2020-021634" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-021634</a>
Pediatric palliative care.
Child; Humans; Professional-Family Relations; Interdisciplinary Communication; Resuscitation Orders; Adaptation; Psychological; patient care team; Psychological; Stress; DNAR; Child welfare; hospice care; Analgesics/tu [Therapeutic Use]; Palliative Care/px [Psychology]; decision making; Pain/dt [Drug Therapy]; Pediatrics/td [Trends]; Quality of Life/px [Psychology]; Analgesics/ae [Adverse Effects]; Constipation/ci [Chemically Induced]; Nausea/ci [Chemically Induced]; Vomiting/ci [Chemically Induced]
Palliative care has always been a part of the care of children. It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and improving quality of life at any stage of disease. In addition, for even the child with the most unpredictable disease, there are predictable times in this child's life when the child, family, and care team will be suffering in ways that can be mitigated by specific interventions. Rather than defining pediatric palliative care in terms of a patient base, severity of disease, or even a general philosophy of care, palliative care can best be understood as a specific set of tasks directed at mitigating suffering. By understanding these tasks; learning to identify predictable times and settings of suffering; and learning to collaborate with multidisciplinary specialists, use communication skills, and identify clinical resources, the pediatrician can more effectively support children with life-threatening illnesses and their families. In this article, we define palliative care as a focus of care integrated in all phases of life and as a set of interventions aimed at easing suffering associated with life-threatening conditions. We detail an approach to these interventions and discuss how they can be implemented by the pediatrician with the support of specialists in hospice and palliative medicine. We discuss common and predictable times of suffering when these interventions become effective ways to treat suffering and improve quality of life. Finally, we discuss those situations that pediatricians most commonly and intensely interface with palliative care-the care of the child with complex, chronic conditions and severe neurologic impairment (SNI).Copyright 2010 Mosby, Inc. All rights reserved.
2010
Klick JC; Hauer JM
Current Problems In Pediatric And Adolescent Health Care
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.cppeds.2010.05.001" target="_blank" rel="noreferrer">10.1016/j.cppeds.2010.05.001</a>
Providing care in chronic disease: the ever-changing balance of integrating palliative and restorative medicine
Humans; Professional-Family Relations; Cost of Illness; Chronic disease; social support; Palliative Care/methods; Quality of Life/psychology
Caring for children who have a chronic life-limiting illness can be emotionally and physically challenging. Just as families may struggle with whether they are making the right decisions, care providers struggle with whether they are giving the right advice, predicting the medical course correctly, and making the correct medical decisions. Uncertainty is a constant for the family and the care provider. The willingness of the care provider to develop a relationship with the family that involves continuing communication and re-evaluation of the child's condition and the family's perspective can relieve some of the emotional and physical suffering associated with a chronic disease and support the family in times of hope and grief.
2007
Klick JC; Ballantine A
Pediatric Clinics Of North America
2007
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.pcl.2007.07.003" target="_blank" rel="noreferrer">10.1016/j.pcl.2007.07.003</a>
Evaluating Hospice And Palliative Medicine Education In Pediatric Training Programs.
Ccm; Nicu; Cardio; Cardiology; Critical Care Medicine; Education; Hematology; Heme/onc; Hospice; Neonatology; Oncology; Palliative Medicine; Pediatric Subspecialty
BACKGROUND:
Hospice and Palliative Medicine (HPM) competencies are of growing importance in training general pediatricians and pediatric sub-specialists. The Accreditation Council for Graduate Medical Education (ACGME) emphasized pediatric trainees should understand the "impact of chronic disease, terminal conditions and death on patients and their families." Currently, very little is known regarding pediatric trainee education in HPM.
METHODS:
We surveyed all 486 ACGME-accredited pediatric training program directors (PDs) - 200 in general pediatrics (GP), 57 in cardiology (CARD), 64 in critical care medicine (CCM), 69 in hematology-oncology (ONC) and 96 in neonatology (NICU). We collected training program's demographics, PD's attitudes and educational practices regarding HPM.
RESULTS:
The complete response rate was 30% (148/486). Overall, 45% offer formal HPM curriculum and 39% offer a rotation in HPM for trainees. HPM teaching modalities commonly reported included conferences, consultations and bedside teaching. Eighty-one percent of all respondents felt that HPM curriculum would improve trainees' ability to care for patients. While most groups felt that a HPM rotation would enhance trainees' education [GP (96%), CARD (77%), CCM (82%) and ONC (95%)], NICU PDs were more divided (55%; p < 0.05 for all comparisons vs. NICU).
CONCLUSION:
While most programs report perceived benefit from HPM training, there remains a paucity of opportunities for pediatric trainees. Passive teaching methods are frequently utilized in HPM curricula with minimal diversity in methods utilized to teach HPM. Opportunities to further emphasize HPM in general pediatric and pediatric sub-specialty training remains.
Singh AL; Klick JC; McCracken CE; Hebbar KB
American Journal Of Hospice And Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1177/1049909116643747