Defining the Boundaries of Palliative Care in Pediatric Oncology
child; human; palliative therapy; controlled study; female; major clinical study; male; article; childhood cancer; terminal care; quality of life; interview; comfort; cancer patient; content analysis; skill; mental health; nurse practitioner; genetic transcription; pediatric oncologist; standardization
Context: Although palliative care (PC) continues to be integrated into pediatric oncological care, only a minority of patients with cancer receive a formal PC consult.
Cuviello A; Raisanen J C; Donohue P K; Wiener L; Boss R D
Journal of Pain and Symptom Management
2020
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.2019.11.022" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.11.022</a>
Development of an innovative program to improve provision of palliative and hospice care to children and families in the community: The story of QoLA Kids
cancer patient; cancer prognosis; catchment; child; childhood cancer; conference abstract; controlled study; counselor; distress syndrome; female; Hospice Care; hospital personnel; human; magnet; major clinical study; male; nurse practitioner; outpatient; palliative therapy; patient referral; pediatric hospital; pediatric patient; prognosis; program impact; quality of life; registered nurse; social worker
Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their families; however, hospice services only reach about 10% of eligible children who die in the United States, with the majority of pediatric patients receiving care through adult hospice organizations. Program Design: The Quality of Life for All (QoLA) Kids program, established in August 2012, is an outpatient, community-based pediatric palliative care and hospice program that strives to enhance quality of life for pediatric patients and families, provide care coordination across multiple settings, mitigate physical, psychosocial, and spiritual distress, ensure a comfortable and peaceful death in the patient's preferred setting, and support bereaved family members and hospital staff. The program represents a partnership between two MAGNET-certified pediatric hospitals and a local home health and hospice agency. QoLA Kids comprises an extensive interdisciplinary team including physicians, nurse practitioners, registered nurses, medical social workers, spiritual counselors, child life specialists, and administrative support staff. Patients are enrolled on either the palliative care or hospice arm of the program, with flexibility to transition easily between arms as clinical status and goals of care evolve. Eligibility for the hospice arm necessitates an expected prognosis of 6 months or less left to live. Program Impact: Since programmatic inception nearly 6 years ago, QoLA Kids has served a total of 330 children and families in the local catchment area. Approximately 41% of patients (n=135) were enrolled on the palliative arm, with the remaining 59% enrolled on hospice (n=195). Between 2012-2017, the mean number of days from enrollment to death was 142 days for patients on the hospice arm (n=76) and 288 for patients on the palliative care arm (n=5). The percentage of patients with malignancies who received palliative care prior to death increased from 71% to 97% within 2 years following program implementation. Conclusions/Future Directions: QoLA Kids is an innovative program that facilitates the provision of palliative care and hospice services and resources to children with serious illness and their families in the community. Through this program, children and families have been able to access palliative care services in their community well before the end of life. After program initiation, an increase in the number of palliative care consults was also seen within the pediatric oncology patient population suggesting that the program may provide an incentive for referral to palliative care. Further investigation is needed to identify optimal metrics for ascertaining the physical and psychosocial benefits from this innovative program.
Kiefer A C; Kaye E C; Blazin L J; Baker J N
Pediatrics
2019
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).
Evaluation of residents' level of comfort with palliative care concepts before and after
child; comfort; conference abstract; controlled study; hospice; human; life; nomenclature; nurse practitioner; palliative therapy; patient care; pediatric hospital; residency education; skill; tertiary health care; total quality management
Introduction The specialty of Pediatric Palliative care and Hospice is growing exponentially, however, residency training programs are often underprepared to meet the evolving educational needs of their trainees with regards to the field. While Pediatric Advance Care Teams (PACT) have been established at many children's hospitals, they are frequently in different stages of development. Residents are often at the forefront of patient care, and may find themselves in difficult end-of-life situations requiring skills not formally taught in their training. As PACT teams grow into their roles at various children's hospitals, residents will continue to be challenged by unfamiliar and unique situations, resulting in a need to educate residents in palliative care. Methods The objective of the quality improvement project was to evaluate residents' understanding of several concepts of palliative care, develop an educational intervention, and to reevaluate resident understanding following this intervention. Goal improvement was 40% over 2 months. 91 pediatric residents of a single program associated with a tertiary care pediatric hospital were invited to participate in the survey. The pretest survey addressed residents' level of comfort of 5 concepts in palliative care on a scale from 1 (least) to 10 (most). The pretest evaluated comfort describing palliative care terminology, comfort discussing concepts with family, and their ability to identify the roles for residents and PACT. After collection, a conference was prepared by the investigators in collaboration with the PACT team physician and nurse practitioner to ensure consistency within the institution. The conference was designed to address knowledge gaps revealed by the survey. Audio and visuals were recorded and made accessible online for all residents. Following the conference, a document was distributed to the residents, addressing the educational needs concerning palliative care, as well as scholarly links to numerous AAP resources on palliative care. A post intervention survey identical to the pretest was then administered. Results 55 residents responded to the pretest survey, with 16 responding post intervention. Pretest mean scores were calculated from the 5 questions, with an average score of 5.68 of a possible 10. Post test mean scores were averaged with result of 7.60 of a possible 10. Post test intervention mean scores showed an increase of 34% from baseline. Conclusion These results show that after intervention, there is a significant increase in residents' level of comfort regarding understanding of basic concepts of palliative care. With educational materials which concisely address the needs determined by initial evaluation, we were able to effectively engage the residents through both audio and visual means to achieve an appreciable and replicable intervention for educating residents in palliative care. Moving forward, we will focus on continuing educational and clinical opportunities for residents in collaboration with the growth of the PACT team.
Pohl C E
Pediatrics
2018
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Increasing accurate palliative care consultation in the NICU
caregiver; child; conference abstract; controlled study; human; International Classification of Diseases; length of stay; mortality risk; newborn; nurse practitioner; outcome assessment; palliative therapy; patient referral; satisfaction; staff training; total quality management
Background: NICU length of stay (LOS) data revealed patient outliers with significantly longer LOS and concomitant increased risk of mortality. Baseline data revealed under-utilization of Pediatric Palliative Care (PPC) consultative services in this population. We desired that those at highest risk of extended LOS with associated mortality receive early PPC consultation. Our multidisciplinary quality improvement project aimed to increase PPC consultation for NICU patients with a life-limiting anomaly identified by trigger-list tool to 80% within one year.
Humphrey L; Schlegel A
Pediatrics
2018
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).
Little lights: Hospital bereavement photography program
human; child; female; terminal care; controlled study; major clinical study; gestational age; conference abstract; bereavement; nurse practitioner; mourning; child death; volunteer; burn; e-mail; infant; emergency ward; respiratory therapist; light; photography; hospital personnel; Work engagement
Description: Purpose: The Little Lights program is a novel, collaborative, nursing-led bereavement photography service created as a solution to the challenge of providing consistent high-quality bereavement photography for families and their dying infants. Little Lights was created by a multidisciplinary group including a professional photographer, provides professional bereavement photography training to staff, and uses a collaborative model involving photography performed by trained staff and edited by professional photographers to give families beautiful mementos of the brief window of time with their infant. The model provides consistent availability of high quality bereavement photographs validating their baby's life and solidifying the infant's importance within the family (Blood & Cacciatore, 2014). Overcoming the barrier of lack of 24-hour availability of volunteer professional photographers allows increased access for families which aids grieving, mourning, and healing for families who lose their child (Limbo & Kobler, 2010). Subjects: Families with an actively dying or deceased infant regardless of gestational age or physical condition. Women's Center staff who volunteer for training and participation in the program. Design: A nurse led complimentary bereavement photography program designed to function internally by collaboration between hospital staff and volunteer professional photographers. Methods: A multidisciplinary team created training sessions focusing on technical aspects of photography as well as culturally sensitive end-of-life care. Staff participation is voluntary, and a system was created for notification and designation of staff photographers during their normal work hours. A hospital approved form is used to obtain consent and email information from families, the photography session is performed, the images are sent to professional photographers who edit them, and the photographers email the images to the family. Results: Since initiation of the Little Lights program in December 2016 to May 2016, 29 staff from the Women's Center Departments and the Emergency Department have been trained. 21 of those trained were nurses, and other staff trained include physicians, respiratory therapists, nurse practitioners, unit secretaries, and volunteers. During this time period, there have been 55 infant deaths, and all families offered the program have consented to photography. All requested sessions have been successfully performed, converted into encrypted files, edited, and dispersed to families. Parental feedback and the described experience of trained hospital staff have been positive. Quality and process improvement is ongoing. Limitations: A current opportunity for improvement is the time needed for editing and delivery of photographs. The goal is to have photographs delivered to families within 72 hours so that they are available for memorial services; however, the current turn-around time is 2 weeks. Other limitations include a misplacement of equipment, rare challenges of staff availability, and the need for ongoing and new training. Implications for Practice: Little Lights addresses common problems experienced by hospitals attempting to provide bereavement photography. It is a sustainable model for the consistent provision of professional quality, compassionate, complimentary bereavement photography. In addition, the program encourages staff engagement with families during their time of need, participation in the grief process, and may help decrease symptoms of staff burn-out.
Vandergrift PS; Bryan D; Bishop C
Journal of Palliative Medicine
2018
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/10.1089/jpm.2018.29007.abstract" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.29007.abstract</a>
Perceptions of barriers and facilitators to early integration of pediatric palliative care: A national survey of pediatric oncology providers
Child; Palliative Care; perception; palliative therapy; childhood cancer; prognosis; Only Child; outcome assessment; cancer prognosis; human; article; child; controlled study; patient care; patient education; software; nurse practitioner; oncologist; social work
Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the care of children with cancer. Methods: A 36-question survey based on preliminary, single-institution data was electronically distributed to pediatric oncology physicians, nurse practitioners, nurses, and social workers nationally. The principal outcomes measured included perceived barriers and facilitators to early integration of pediatric palliative care. Data were analyzed using Rv3.1.2 statistical software. Results: Most respondents agreed that the PCT does not negatively impact the role of the oncologist; however, there were concerns that optimal patient care may be limited by pediatric oncologists' need to control all aspects of patient care (P < 0.001). Furthermore, oncologists, more than any provider group, identified that the emotional relationship they form with the patients and families they care for, influences what treatment options are offered and how these options are conveyed (P < 0.01). Education and evidence-based research remain important to all providers. Respondents reached consensus that early integration of a PCT would provide more potential benefits than risks and most would not limit access to palliative care based on prognosis. Conclusions: Overall, providers endorse early integration of the PCT for children with cancer. There remains a continued emphasis on provider and patient education. Palliative care is generally accepted as providing a benefit to children with cancer, though barriers persist and vary among provider groups.
Dalberg T; McNinch NL; Friebert S
Pediatric Blood and Cancer
2018
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
PICU and palliative care partnership to standardize family meetings and decrease ICU readmission rates
child; conference abstract; controlled study; documentation; health care system; hospital readmission; human; intensive care; invasive procedure; length of stay; nurse practitioner; palliative therapy; protocol compliance; satisfaction; total quality management
Program Goals: The American College of Critical Care Medicine Task Force, 2004-2005 recommends "family meetings with the multi-professional team begin within 24-48 hours after ICU admission and are repeated as dictated by the condition of the patient with input from all pertinent members of the multi-professional team" (2007). We set forth to follow this recommendation through palliative care and pediatric ICU partnerships as well as standardized family meetings. We hypothesize that this will improve patient and family satisfaction, decrease ICU re-admission rates and may decrease overall length of stay and invasive procedures. We have developed a quality improvement project targeting patients that have had a re-admission to the PICU within 30 days. The project outlines the optimal timing of family meetings, provides a meeting content planner, and documentation template. The targeted patient population will receive an automatic palliative care consult to assist with the coordination and conducting of an initial family meeting. The frequency of subsequent scheduled family meetings will be determined based on patient/family needs and acuity of illness. In 2015, we found 42 re-admissions (3% of all PICU admissions) within a 30 day period. The majority of the readmissions were medically complex children with three or more co-morbid conditions. Our goal through implementation of this program is to decrease the readmissions by 20% within a one year time period. We intend to use a standardized format for these meetings as previously published by Nelson et al in 2009. Meetings will be attended by at least one family member, bedside nurse, ICU physician (fellow or attending) or Nurse Practitioner and palliative care team members. The family meeting documentation template will be created in our EMR to serve as both a guide for the meeting and documentation format. Evaluation We plan to monitor our protocol compliance by tracking readmissions, placement of palliative care consult order, family meeting occurring within 48-72 hours of readmission, documentation of the family meetings, and frequency at which family meetings are occurring thereafter. Upon successful implementation of our protocol, we will follow total length of stay, PICU length of stay and number of invasive procedures. Discussion Hospital re-admission rates are becoming a widespread concern throughout many healthcare systems. The majority of these pediatric re-admissions involve medically complex children. We hope this multi-disciplinary approach utilizing recommended best practices from the American College of Critical Care Medicine Task Force contributes to a decrease in ICU re-admission rates.
Frizzola M; Miller E; Hayman J; Levy C
Pediatrics
2018
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).
Use Of Spiritual Coping Strategies By Gender, Race/ethnicity, And Religion At 1 And 3 Months After Infant's/child's Intensive Care Unit Death
Advanced Practice Nurse; Bereaved Parents; Emotional Adjustment; Nicu/picu; Nurse Practitioner; Pediatrics; Spirituality
BACKGROUND AND PURPOSE: In the United States, 57,000 children (newborn to 18 years) die annually. Bereaved parents may rely on religious or spiritual beliefs in their grief. The study's purpose was to examine differences in parents' use of spiritual and religious coping practices by gender, race/ethnicity, and religion at 1 and 3 months after infant/ICU death. METHODS: The sample consisted of 165 bereaved parents, 78% minority. The Spiritual Coping Strategies Scale was used to measure religious and spiritual coping practices, separately. One-way ANOVAs indicated that Black non-Hispanic mothers used significantly more religious coping practices at 3 months than White non-Hispanic mothers. Protestant and Catholic parents used more religious coping practices than the "no" and "other" religion groups at 1 and 3 months. Within the 30 mother-father dyads (paired t-tests), mothers reported significantly greater use of religious coping practices at 1 and 3 months and spiritual coping practices at 3 months than fathers. CONCLUSION: Religious coping practices were most commonly used by Black mothers and Protestant and Catholic parents. Within dyads, mothers used more spiritual and religious coping practices than fathers. IMPLICATIONS FOR PRACTICE: These findings are beneficial for healthcare personnel in providing support to bereaved parents of diverse races/ethnicities and religions.
Hawthorne D M; Youngblut JM; Brooten D
Journal Of The American Association Of Nurse Practitioners
2017
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).
10.1002/2327-6924.12498