Factors that Contribute to Bereaved Parents' Perceptions of Neonatal Palliative Care: A Systematic Literature Review
infant; review; guideline; neonatal; newborn; parent; experience; family; quality; satisfaction; palliative; Reviews; human; article; female; male; perception; psychological; therapy; practice; care; Reporting; intensive; unit; and; for; Items; Meta-Analyses; Preferred; systematic; Systematic; analysis; meta; units
OBJECTIVES: Neonatal palliative care (NPC) is an emerging subset of care in United States (US) neonatal intensive care units (NICUs) that provides relief for both infants and families at the end of life for infants with terminal diagnoses. Families play a integral role in the decision-making process for their infant, but their experiences with and perceptions of the support and care provided to them via NPC is unclear to health professionals. This literature review summarizes the state of knowledge on parents' perspectives of NPC while focusing on the specific factors that influence their experiences and satisfaction with NPC. METHOD(S): A systematic literature review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Articles published in peer-reviewed journals between January 2010 and January 2021 that investigated parents' perceptions of neonatal palliative care either as their central topic or as a sub-topic as part of a larger focus. RESULT(S): A total of 16 articles (N = 16) were included in this review. Three overarching themes encompass the findings of the literature review: parent-clinician interactions, parent-infant interactions, and parent-self interactions. Within these themes, topics such as consistent and clear communication, involvement in care decisions, and social and psychological support were explored. CONCLUSION(S): Clinicians must focus on these important quality indicators to ensure they provide the best care possible to the patients and families that they serve. Further research must be done to investigate parent satisfaction and needs in relation to NPC more deeply and to develop more supportive interventions and protocols.
Hamel M N; Beltran SJ
American Journal of Hospice and Palliative Care
2022
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/10.1177/10499091221113277">10.1177/10499091221113277</a>
A Retrospective Examination of Home PCA Use and Parental Satisfaction With Pediatric Palliative Care Patients
pediatric; palliative care; quality of life; Parental Satisfaction; patient-controlled analgesia
INTRODUCTION: Home Patient-Controlled Analgesia (PCA) is an effective and often preferred therapy for the treatment of chronic pain symptoms in the pediatric palliative care patient. There is little previous research of patient experience with Home PCA. The purpose of this study was to investigate use of home PCA devices in pediatric patients to inform palliative care providers considering an alternative management option for the treatment of end-of-life or chronic pain. METHODS: A chart review was performed of patients prescribed home PCA. Surveys were sent to patients' guardians/caregivers. Questions referred to caregiver impression/satisfaction with information provided regarding use of the PCA machine, the medication used, the benefits and risks of PCA, monitoring of patient pain level and alertness, machine efficacy, and fears and concerns. RESULTS: Thirty-four patients met inclusion criteria, and 18 patient families completed surveys. Demographic data showed that the majority were Caucasian and had a cancer diagnosis. Patient age and duration of home PCA use varied greatly. Overall, participants were satisfied with information received and felt positively about home PCA, albeit expressing concerns. The majority described the machine as easy to use and were satisfied with their child's pain management and level of alertness. CONCLUSION: Responses indicated that home PCA is a manageable and effective alternative to traditional analgesic medications for management of chronic pain in the pediatric patient.
Grossoehme DH; Brown M; Richner G; Zhou SM; Friebert S
The American journal of hospice & palliative care
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/10.1177/10499091211034421" target="_blank" rel="noreferrer noopener">10.1177/10499091211034421</a>
Parent's Lived Experience of Memory Making With Their Child at or Near End of Life
child; end of life; lived experience; memory making; parent
BACKGROUND: Memory making is the process of creating mementos of a child with a life limiting condition, who may be at or near end of life, providing a tangible and visual connection to the child who has died. AIM: This study explored the lived experience a memory making process had on parents of children who were at or near end-of-life. DESIGN: A qualitative approach was used. Hermeneutic phenomenology methods provided guidance to the data collection, with a more limited interpretative phenomenological analysis conducted. SETTING: A purposive selected sample of 6 parents whose child had died and who had engaged in memory making participate. The sample was drawn from parents whose child had received care from a children's hospice. RESULTS: Individual interviews were conducted with 6 parents, all mothers. Three main themes emerged: Making the memories; the impact of memory making; and the end-of-life care journey. Parents experienced an overwhelmingly positive impact from memory making, as well as tangible and precious mementos that were created. The positive impact the process had on coping with grief and loss was also demonstrated, as well as the effect of helping to keep the deceased child's memory alive and include them in conversation. CONCLUSIONS: The importance of skilled and sensitive staff with the ability to introduce the concept of memory making, and choice at end of life were highlighted by the parents who took part. Clinicians may benefit from understanding how memory making can positively impact the bereavement experience of parents whose child has died.
Clarke T; Connolly M
The American journal of hospice & palliative care
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/10.1177/10499091211047838" target="_blank" rel="noreferrer noopener">10.1177/10499091211047838</a>
Methadone for Cancer Pain in Pediatric End-of-Life Care
palliative care; opioid analgesics; cancer pain; pediatric oncology; neuropathic pain; methadone; nociceptive pain
BACKGROUND: The goal of adequate pain control becomes increasingly salient for children with cancer and their families as the patients approach the end of life. Methadone is one option that is particularly desirable in end-of-life care given its long duration of action and NMDA antagonism that may help in controlling pain refractory to conventional opioids. The purpose of this study was to describe a single institution's experience with methadone for the treatment of cancer pain in pediatric end-of-life care. METHOD(S): This retrospective, observational, single-center study included all patients during a 9-year period who died in the inpatient setting and were receiving methadone in their last 30 days of life. RESULT(S): Twenty patients were identified, 18 (90%) of whom received methadone for nociceptive pain. The median duration of methadone use was 32 days (range 2-323 days). Methadone doses ranged from 0.09 to 7.76 mg/kg per day. There were no instances of discontinuing methadone due to an increased QTc interval. No episodes of torsades de pointes were observed. CONCLUSION(S): In patients with pediatric cancer who are nearing the end of life, methadone is a valuable adjunctive therapy to treat nociceptive and neuropathic pain and to prevent opioid-induced hyperalgesia and opioid tolerance. An individualized approach to dosage and route should be considered based on specific clinical circumstances.
Hall E A; Sauer H E; Habashy C; Anghelescu D L
The American journal of hospice & palliative care
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/10.1177/1049909120963641" target="_blank" rel="noreferrer noopener">10.1177/1049909120963641</a>
A Mixed-Methods Quasi-Experimental Study on Perspectives Among Physicians and Nurses Regarding Use of Palliative Care Teams in the Pediatric Intensive Care Unit After Out-of-Hospital Cardiac Arrest
education and counseling; goals of care; out-of-hospital cardiac arrest; palliative care; pediatric palliative care consult; psychosocial support
BACKGROUND: Nationally, only one-third of children survive to hospital discharge after initial presentation with out-of-hospital cardiac arrest (OHCA). Of those children who survive, less than 25% leave the hospital at their functional baseline. Given these poor outcomes, such patients could benefit from palliative care involvement. AIMS: To characterize the existing use and identify barriers to seeking palliative care consults in children admitted to the Pediatric Intensive Care Unit (PICU) with OHCA. DESIGN: Mixed-methods quasi-experimental study. PARTICIPANTS: Physicians (MD/DO), nurse practitioners, and registered nurses who provide care in the PICU. RESULT(S): Overall, nurses felt palliative care was consulted "not nearly enough" (43%), while the majority of physicians (53.9%) perceived palliative care services are requested either "just the right amount" (30.8%) or "too often" (23.1%). The top 3 desired palliative services were (1) patient and family psychosocial support, (2) assistance with determining goals of care, and (3) counseling and education. Barriers to consults were forgetting/not thinking about consulting, and family refusal of palliative care consult. No statistical differences among participant groups were found for likelihood to consult palliative care, unless the patient faced imminent death. CONCLUSION(S): Pediatric Intensive Care Unit providers desire assistance from palliative care teams for help with identifying goals of care, providing psychosocial support, as well as education to the patients and their families. Unfortunately, there remains a large discrepancy between physicians and nurses when it comes to how often palliative care is, and should, be consulted.
Broman A; Williams C; Macauley R; Carney P A
The American journal of hospice & palliative care
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/10.1177/1049909120937454" target="_blank" rel="noreferrer noopener">10.1177/1049909120937454</a>
Pediatric Cardiac Critical Care Transport and Palliative Care: A Case Series
hospice; pediatrics; palliative medicine; congenital heart disease; heart surgery; heart failure
OBJECTIVE: To present our center's experience with terminal extubation in 3 palliative critical care home transports from the Pediatric Cardiac Intensive Unit. DESIGN: All cases were identified from our Cardiovascular intensive care unit ( CVICU). Patients were terminally ill children with no other surgical or medical option who were transported home between 2014 and 2018, for terminal extubation and end-of-life care according to their families' wishes. INTERVENTIONS: The patients were 7, 9 months, and 19 years; and they had very complex and chronic conditions. The families were approached by the CVICU staff during multidisciplinary meetings, where goals of care were established. Parental expectations were clarified, and palliative care team was involved, as well as home hospice was arranged pre transfer. The transfer process was discussed and all the needs were established. All patients had unstable medical conditions, with needs for transport for withdrawal of life support and death at home. Each case needed a highly trained team to support life while in transport. The need of these patients required coordination with home palliative care services, as well as community resources due to difficulty to get in their homes. CONCLUSION(S): Transportation of pediatric cardiac critical care patients for terminal extubation at home is a relatively infrequent practice. It is a feasible alternative for families seeking out of the hospital end-of-life care for their critically ill and technology dependent children. Our single-center experience supports the need for development of formal programs for end-of-life critical care transports.
Garcia X; Frazier E; Kane J; Jones A; Brown C; Bryant T; Prodhan P
The American journal of hospice & palliative care
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/10.1177/1049909120928280" target="_blank" rel="noreferrer noopener">10.1177/1049909120928280</a>
The Experience of Pediatric Palliative Caregiving: A Qualitative Analysis From the Photographs of Meaning Program
article; care behavior; caregiver; child; curriculum; female; human; human experiment; male; meaning making; narrative; palliative therapy; pediatrics; photography; qualitative analysis; qualitative research; social media
The Photographs of Meaning Program for pediatric palliative caregivers (POM-PPCG) is an innovative, meaning-based intervention utilizing photovoice and social media components. In 2017, 9 pediatric palliative caregivers participated in this intervention. During the social media portion of the POM-PPCG, participants were presented with weekly themes based on a meaning-making curriculum. In response, they took photographs, applied either audio or typed narratives, and shared them via social media. Ninety-five photographs with narratives were produced during the intervention. Through thematic qualitative analysis with consensual qualitative research components, 5 themes were identified: Love, Challenges, Loss, Coping, and The New Normal. This study adds to existing literature by shedding light on the experiences of caregivers of children with palliative care needs. Findings from this research contribute not only to the innovative use of qualitative methods but also to the clinical knowledge and practice regarding the pediatric palliative caregiver experience.
Levy K; Grant PC; Tenzek KE; Depner RM; Pailler ME; Beaupin LK
The American journal of hospice & palliative care
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).
<a href="http://doi.org/10.1177/1049909119879413" target="_blank" rel="noreferrer noopener">10.1177/1049909119879413</a>
Simulation-Based Palliative Care Communication for Pediatric Critical Care Fellows
palliative care; communication; simulation; pediatric critical care; breaking bad news
BACKGROUND: Pediatric palliative care (PPC) education is lacking in pediatric critical care medicine (PCCM) fellowships, despite the desire of many program directors and fellows to expand difficult conversation training. Simulation-based training is an experiential method for practicing challenging communication skills such as breaking bad news, disclosing medical errors, navigating goals of care, and supporting medical decision-making. METHODS: We describe a simulation-based PPC communication series for PCCM fellows, including presimulation session, simulation session, debriefing, and evaluation methods. From 2011 to 2017, 28 PCCM fellows participated in a biannual half-day simulation session. Each session included 3 scenarios (allowing for participation in up to 18 scenarios over 3 years). Standardized patients portrayed the child's mother. PCCM and interprofessional PPC faculty cofacilitated, evaluated, and debriefed the fellows after each scenario. Fellows were evaluated in 4 communication categories (general skills, breaking bad news, goals of care, and resuscitation) using a 3-point scale. A retrospective descriptive analysis was conducted. RESULTS: One hundred sixteen evaluations were completed for 18 PCCM fellows. Median scores for general communication items, breaking bad news, and goals of care ranged from 2.0 to 3.0 (interquartile range [IQR]: 0-1) with scores for resuscitation lower at 1.0 (IQR: 1.5-2). DISCUSSION: This experiential simulation-based PPC communication curriculum taught PCCM fellows valuable palliative communication techniques although revealed growth opportunities within more complex communication tasks. The preparation, methods, and lessons learned for an effective palliative simulation curriculum can be expanded upon by other pediatric training programs, and a more rigorous research program should be added to educational series.
Brock K E; Tracewski M; Allen K E; Klick J; Petrillo T; Hebbar K B
The American Journal of Hospice & Palliative Care
2019
<a href="http://doi.org/10.1177/1049909119839983" target="_blank" rel="noreferrer noopener">10.1177/1049909119839983</a>
Pediatric Complex Chronic Conditions: Does the Classification System Work for Infants?
infant; complex chronic conditions; chronic disease; hospital patient; end-of-life; Caucasian; health care cost; serious illness; human; article; child; controlled study; attention; comorbidity; palliative therapy; prevalence; infants; African American; hcup kid; insurance; neonates; regression analysis
BACKGROUND:: One widely accepted approach to identify children with life-limiting health problems is the complex chronic conditions (CCCs) classification system. Although considered the "gold standard" for classifying children with serious illness, little is known about its performance, especially among infants. OBJECTIVE/HYPOTHESIS:: This research examined the prevalence of CCCs and the infant characteristics related to a CCC classification. METHOD(S):: Multivariate regression analysis was conducted with 2012 Kids' Inpatient Database, Healthcare Cost and Utilization Project data files, using a national sample of infant decedents less than 1 year. RESULT(S):: Our findings showed that 40% of the infants were classified with a CCC. African Americans were negatively associated with a CCC classification (adjusted odds ratio [aOR] = 0.63; 95% confidence interval [CI] = 0.543-0.731). When infants had other insurance coverage, they were less likely (aOR = 0.63; 95% CI = 0.537-0.748) to have a CCC classification. Infants who resided in nonurban areas (aOR = 1.21; 95% CI =1.034-1.415) and had comorbidities (aOR = 38.19; 95% CI = 33.12-44.04) had greater odds of having a CCC classification. CONCLUSION(S):: The findings suggested that the infants are not commonly classified with a CCC and highlighted the significant variation in race with African American infants exhibiting different CCC classifications than Caucasian infants. Given the importance of reducing disparities in palliative care, critical attention to using CCC classifications in research is warranted.
Lindley L C; Fortney C A
The American Journal of Hospice & Palliative Care
2019
<a href="http://doi.org/10.1177/1049909119838985" target="_blank" rel="noreferrer noopener">10.1177/1049909119838985</a>
Development and Implementation of an End-of-Life Curriculum for Pediatric Residents
dying; palliative therapy; comfort; satisfaction; resident; human; article; child; terminal care; curriculum development
BACKGROUND: Caring for a child near the end of life (EOL) can be a stressful experience. Resident physicians are often the frontline providers responsible for managing symptoms, communicating difficult information, and pronouncing death, yet they often receive minimal education on EOL care. OBJECTIVE: To develop and implement an EOL curriculum and to study its impact on resident comfort and attitudes surrounding EOL care. DESIGN: Kern's 6-step approach to curriculum development was used as a framework for curriculum design and implementation. SETTING/PARTICIPANTS: Categorical and combined pediatric residents at a large quaternary care children's hospital were exposed to the curriculum. MEASUREMENTS: A cross-sectional survey was distributed pre- and postimplementation of the curriculum to evaluate its impact on resident comfort and attitudes surrounding EOL care. RESULTS: One-hundred twenty-six (49%) of 258 residents completed the preimplementation survey, and 65 (32%) of 201 residents completed the postimplementation survey. Over 80% of residents reported caring for a dying patient, yet less than half the residents reported receiving prior education on EOL care. Following curriculum implementation, the percentage of residents dissatisfied with their EOL education fell from 36% to 14%, while the percentage of residents satisfied with their education increased from 14% to 29%. The postimplementation survey identified that resident comfort with communication-based topics improved, and they sought additional training in symptom management. CONCLUSIONS: The implementation of a longitudinal targeted multimodal EOL curriculum improved resident satisfaction with EOL education and highlighted the need for additional EOL education.
Wilson PM; Herbst L A; Gonzalez-Del-Rey J
The American journal of hospice & palliative care
2018
<a href="http://doi.org/10.1177/1049909118786870" target="_blank" rel="noreferrer noopener">10.1177/1049909118786870</a>
Children With Intellectual Disability and Hospice Utilization: The Moderating Effect of Residential Care
United States; hospice care; California; terminal care; hospital admission; organization and management; long term care; human; child; female; male; statistics and numerical data; utilization; intellectual impairment/th [Therapy]; medicaid; patient preference
BACKGROUND: Children with intellectual disability commonly lack access to pediatric hospice care services. Residential care may be a critical component in providing access to hospice care for children with intellectual disability. OBJECTIVE/HYPOTHESIS: This research tested whether residential care intensifies the relationship between intellectual disability and hospice utilization (ie, hospice enrollment, hospice length of stay), while controlling for demographic characteristics. METHODS: Multivariate regression analyses were conducted using 2008 to 2010 California Medicaid claims data. RESULTS: The odds of children with intellectual disability in residential care enrolling in hospice care were 3 times higher than their counterparts in their last year of life, when controlling for demographics. Residential care promoted hospice enrollment among children with intellectual disability. The interaction between intellectual disability and residential care was not related to hospice length of stay. Residential care did not attenuate or intensify the relationship between intellectual disability and hospice length of stay. CONCLUSIONS: The findings highlight the important role of residential care in facilitating hospice enrollment for children with intellectual disability. More research is needed to understand the capability of residential care staff to identify children with intellectual disability earlier in their end-of-life trajectory and initiate longer hospice length of stays.
Lindley LC
The American journal of hospice & palliative care
2018
<a href="http://doi.org/10.1177/1049909117743181" target="_blank" rel="noreferrer noopener">10.1177/1049909117743181</a>
A Multimodal Mindfulness Training to Address Mental Health Symptoms in Providers Who Care for and Interact With Children in Relation to End-of-Life Care
Humans; Intensive Care Units; Intensive Care Units; Middle Aged; Female; Male; Adult; Aged; Pediatric; Neonatal; Terminal Care/px [Psychology]; Mental Health; Burnout; Health Personnel/px [Psychology]; Mindfulness/mt [Methods]; Clergy/px [Psychology]; Depression/px [Psychology]; Social Workers/px [Psychology]; Professional/px [Psychology]
AIM: Medical providers may face unique emotional challenges when confronted with the suffering of chronically ill, dying, and bereaved children. This study assessed the preliminary outcomes of participation in a group-based multimodal mindfulness training pilot designed to reduce symptoms of burnout and mental health symptoms in providers who interact with children in the context of end-of-life care., METHODS: A total of 13 medical providers who care for children facing life-threatening illness or bereaved children participated in a 9-session multimodal mindfulness session. Mental health symptoms and burnout were assessed prior to the program, at the program midpoint, and at the conclusion of the program., RESULTS: Participation in the pilot was associated with significant reductions in depressive and posttraumatic stress disorder (PTSD) symptoms among providers ( P < .05)., CONCLUSION: Mindfulness-based programs may help providers recognize and address symptoms of depression and PTSD. Additional research is needed to enhance access and uptake of programming among larger groups of participants.
O'Mahony S; Gerhart J; Abrams I; Greene M; McFadden Rory; Tamizuddin S; Levy MM
The American journal of hospice & palliative care
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).
<a href="http://doi.org/10.1177/1049909116660688" target="_blank" rel="noreferrer noopener">10.1177/1049909116660688</a>
Incorporating Bereaved Parents as Faculty Facilitators and Educators in Teaching Principles of Palliative and End-of-Life Care.
bereavement; communication training; end of life; palliative care education; pediatric oncology; pediatric palliative care
BACKGROUND: Education and training for interdisciplinary pediatric providers requires training in principles of palliative and end-of-life (EOL) care. The experiences of bereaved parents can inform and enhance palliative care educational curricula in uniquely powerful and valuable ways. The objective of this study is to present an innovative palliative care educational program facilitated by trained bereaved parents who serve as volunteer educators in local and national palliative care educational forums and to describe how incorporation of bereaved parents in these educational forums affects participant comfort with communication and management of children at the EOL. METHODS: Parent educators underwent both general and session-specific training and participated in debriefings following each session. Survey tools were developed or adapted to determine how bereaved parent educators affected participant experiences in 3 different educational forums. Pre- and postsession surveys with incorporation of retrospective preprogram assessment items to control for response shift were used in the evaluation of institutional seminars on pediatric palliative and EOL care and role-play-based communication training sessions. Results from feedback surveys sent to attendees were used to appraise the participants' experience at the international oncology symposium. RESULTS: Involvement of trained parent educators across diverse, interdisciplinary educational forums improved attendee comfort in communicating with, and caring for, patients and families with serious illness. Importantly, parent educators also derive benefit from involvement in educational sessions with interdisciplinary clinicians. CONCLUSIONS: Integration of bereaved parents into palliative and EOL care education is an innovative and effective model that benefits both interdisciplinary clinicians and bereaved parents.
Snaman JM; Kaye EC; Spraker-Perlman H; Levine D; Clark L; Wilcox R; Barnett B; Sykes April; Lu Z; Cunningham MJ; Baker JN
The American journal of hospice & palliative care
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/10.1177/1049909118786875" target="_blank" rel="noreferrer noopener">10.1177/1049909118786875</a>
The Ligurian high-school educational project on palliative care: development and piloting of a school-based intervention on bereavement and severe illness
This study was aimed at developing and piloting a school-based intervention on severe illness-induced bereavement through a project focused on spreading knowledge of palliative care among high school students (phases 0-II Medical Research Council Framework). The intervention entailed the screening of a topic-related movie and a classroom meeting. Eight classes from 2 high schools participated, and a before-after evaluation was used to assess intervention feasibility and impact. Valid questionnaires, including 2 open-ended questions focusing on bereavement and strategies for coping with loss, were filled in by 89% (before) and 84% (after) of the 159 students. In the after evaluation, content analysis on the "strategies" question showed that answers concerning closeness and sharing were reported more frequently. Positive feedback was collected as regards the overall experience.
2014-11
Beccaro M; Gollo G; Giordano Monica; Igazzini J; Servente V; Vignali S; Costantini M; Leo Silvia Di
The American Journal Of Hospice & Palliative Care
2014
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/10.1177/1049909113503394" target="_blank" rel="noreferrer">10.1177/1049909113503394</a>
Mortality Trends for Pediatric Life-Threatening Conditions
hospice; mortality; illness; life-threatening conditions
Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions. Characteristics of the sample (hospice) were compared to that of the population (province) for individuals aged 0 to 18 years from 2002 to 2011. The provincial death rate was 2.30 per 10 000. The sample did not significantly vary with respect to sex and geographic distribution when compared to the population. Infants contributed to a significantly larger proportion of pediatric deaths in the population. Children referred to the hospice were more likely to be diagnosed with cancer and diseases of the nervous system. Only 15% of all pediatric deaths due to disease in the province were cared for by the hospice, calling for the strengthening of interdisciplinary palliative care programs.
2014-03
Chavoshi N; Miller T; Siden H
The American Journal Of Hospice & Palliative Care
2014
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Journal Article
<a href="http://doi.org/10.1177/1049909114524476" target="_blank" rel="noreferrer">10.1177/1049909114524476</a>
Palliative Sedation: An Analysis of International Guidelines and Position Statements
hospice; end-of-life care; international guidelines; palliative medicine; Palliative sedation
Purpose:To describe the suggested clinical practice of palliative sedation as it is presented in the literature and discuss available guidelines for its use. METHODS: CINAHL, PubMed, and Web of Science were searched for publications since 1997 for recommended guidelines and position statements on palliative sedation as well as data on its provision. Keywords included palliative sedation, terminal sedation, guidelines, United States, and end of life. Inclusion criteria were palliative sedation policies, frameworks, guidelines, or discussion of its practice, general or oncology patient population, performance of the intervention in an inpatient unit, for humans, and in English. Exclusion criteria were palliative sedation in children, acute illness, procedural, or burns, and predominantly ethical discussions. RESULTS: Guidelines were published by American College of Physicians-American Society of Internal Medicine (2000), Hospice and Palliative Nurses Association (2003), American Academy of Hospice and Palliative Medicine (2006), American Medical Association (2008), Royal Dutch Medical Association (2009), European Association for Palliative Care (2009), National Hospice and Palliative Care Organization (2010), and National Comprehensive Cancer Network (2012). Variances throughout guidelines include definitions of the practice, indications for its use, continuation of life-prolonging therapies, medications used, and timing/prognosis.Recommendations:The development and implementation of institutional-based guidelines with clear stance on the discussed variances is necessary for consistency in practice. Data on provision of palliative sedation after implementation of guidelines needs to be collected and disseminated for a better understanding of the current practice in the United States.
2014-05
Gurschick L; Mayer DK; Hanson LC
The American Journal Of Hospice & Palliative Care
2014
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Journal Article
<a href="http://doi.org/10.1177/1049909114533002" target="_blank" rel="noreferrer">10.1177/1049909114533002</a>
The Use of Emergency Medication Kits in Community Palliative Care: An Exploratory Survey of Views of Current Practice in Australian Home-Based Palliative Care Services
symptom management; community palliative care; emergency medication
Improving symptom management for palliative care patients has obvious benefits for patients and advantages for the clinicians, as workload demands and work-related stress can be reduced when the emergent symptoms of patients are managed in a timely manner. The use of emergency medication kits (EMKs) can provide such timely symptom relief. The purpose of this study was to conduct a survey of a local service to examine views on medication management before and after the implementation of an EMK and to conduct a nationwide prevalence survey examining the use of EMKs in Australia. Most respondents from community palliative care services indicated that EMKs were not being supplied to palliative care patients but believed such an intervention could improve patient care.
2014-05
Bullen T; Rosenberg JP; Smith B; Maher K
The American Journal Of Hospice & Palliative Care
2014
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Journal Article
<a href="http://doi.org/10.1177/1049909114536922" target="_blank" rel="noreferrer">10.1177/1049909114536922</a>
Geographic Access to Hospice Care for Children With Cancer in Tennessee, 2009 to 2011
cancer; hospice care; certificate of need; geographic access
The geographic interface between the need for and the supply of pediatric hospice may be critical in whether children with cancer access care. This study sought to describe the geographic distribution of pediatric hospice need and supply and identify areas lacking pediatric hospice care in Tennessee over a 3-year time period. Using ArcGIS, a series of maps were created. There was a consistent need for care among children with cancer across the state. Most urban areas were supplied by pediatric hospices, except the Knoxville area. Areas within the state were identified where the supply of pediatric hospice care declined, while the need for hospice care was unchanging. This study has important regulatory implications for clinicians practicing in certificate of need states such as Tennessee.
2014-07
Lindley LC; Edwards SL
The American Journal Of Hospice & Palliative Care
2014
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/10.1177/1049909114543641" target="_blank" rel="noreferrer">10.1177/1049909114543641</a>
Palliative Care in Neonatal Intensive Care, Effects on Parent Stress and Satisfaction: A Feasibility Study
infant; neonatal intensive care unit
CONTEXT: Approximately 1 in 10 infants require neonatal intensive care unit (NICU) hospitalization, which causes parental stress. Palliative care (PC) provides an opportunity to alleviate suffering and stress. OBJECTIVES: This study examines the effects of PC on NICU parent stress and satisfaction. METHODS: A prospective cohort design compares stress and satisfaction among families receiving or not receiving PC. RESULTS: No significant differences in stress scores were found (P = .27-1.00). Palliative care parents (100%) were more likely to report being "extremely satisfied" with care than usual-care parents (50%). CONCLUSION: This study supports the feasibility of evaluating NICU PC services. Infants referred for PC typically have higher morbidity/mortality; therefore, higher parental stress scores may be expected. Stress levels were similar in both cohorts, thus PC did not increase stress and may decrease PC parent stress.
2014-09
Petteys AR; Goebel Joy R; Wallace JD; Singh-Carlson S
The American Journal Of Hospice & Palliative Care
2014
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/10.1177/1049909114551014" target="_blank" rel="noreferrer">10.1177/1049909114551014</a>
Nursing Staff's Perception of Barriers in Providing End-of-Life Care to Terminally Ill Pediatric Patients in Southeast Iran
OBJECTIVE: To determine pediatric nurses' perceptions of intensity, frequency occurrence, and magnitude score of selected barriers in providing pediatric end-of-life (EOL) care. METHOD: A translated modified version of National Survey of critical care Nurses' s Regarding End-of-Life Care questionnaire was used to assess 151 nurses' perceptions of intensity and frequency occurrence of barriers in caring for dying children. RESULTS: The highest/lowest perceived barriers magnitude scores were "families not accepting poor child prognosis" (5.04) and "continuing to provide advanced treatment to dying child because of financial benefits to the hospital" (2.19). CONCLUSION: More high perceived barriers by nurses were family-related issues. One of the possible causes of such deficiencies was lack of palliative care (PC) education/PC units in Iran. Thus, developing EOL/PC education may enhance nurses' knowledge/skill to face EOL care challenges.
2014-11
Iranmanesh S; Banazadeh M; Forozy MA
The American Journal Of Hospice & Palliative Care
2014
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Journal Article
<a href="http://doi.org/10.1177/1049909114556878" target="_blank" rel="noreferrer">10.1177/1049909114556878</a>
Comparison of the Educational Needs of Neonatologists and Neonatal Nurses Regarding Palliative Care in Taiwan
BACKGROUND: Education and training are very critical to development of high-quality neonatal palliative care. However, little investigation has been done into Taiwanese neonatal clinicians' educational needs regarding neonatal palliative care. PURPOSES: The purposes of this study were to characterize and identify neonatal clinicians' educational needs regarding neonatal palliative care. METHODS: A cross-sectional descriptive surveyed method via a self administered questionnaire was used in this research. Thirty neonatologists were recruited by a convenience sampling and 30 nurses were recruited by a randomized sampling. RESULTS: Out of sixty neonatal clinicians' survey, few had received the education in neonatal palliative care. Most reported minimal training in, experience with, and knowledge of neonatal palliative care. For neonatologists, two of twelve most strongly-felt educational needs were "discussing palliative care and ethical decision-making with parents" (70%) and "informing parents the poor progress in neonates" (63.3%). In contrast, neonatal nurses wanted more training regarding pain control (50%). Communication skills, including the discussing poor prognosis, bad news, and code status and talking with neonates about end-of-life care, were the educational need most commonly felt by both neonatologists and nurses. CONCLUSIONS: Survey data from neonatologists and neonatal nurses in Taiwan indicate a need for further training on a range of neonatal palliative care competencies.
2014-11
Lee Min-Chun; Chen YC; Chen CH; Lu FL; Hsiao C-C; Peng Niang-Huei
The American Journal Of Hospice & Palliative Care
2014
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Journal Article
<a href="http://doi.org/10.1177/1049909114559068" target="_blank" rel="noreferrer">10.1177/1049909114559068</a>
The effects of the Palliative Medicine Consultation on the DNR status of African Americans in a safety-net hospital.
Female; Humans; Male; Critical Illness; Prognosis; Aged; Middle Aged; Communication; Poverty Areas; Attitudes; retrospective studies; Health Knowledge; DNAR; Resuscitation Orders; Palliative Care/mt [Methods]; Advance Directives/eh [Ethnology]; Palliative Care/og [Organization & Administration]; New York City; Advance Directives/sn [Statistics & Numerical Data]; African Americans/statistics & numerical data; Hispanic Americans/sn [Statistics & Numerical Data]; Palliative Care/sn [Statistics & Numerical Data]; Practice/eh [Ethnology]; Referral and Consultation/statistics & numerical data
OBJECTIVE: To examine the effectiveness of palliative medicine consultation on completion of advance directives/do-not-resuscitate (DNR) orders by racial/ethnic minorities., METHOD: A sample of 1999 seriously ill African American and Hispanic inpatients was obtained from the Palliative Medicine Consultation database (n = 2972). Associations between race/ethnicity and diagnosis and documentation of DNR status on admission and discharge were examined., RESULTS: Cancer was the primary diagnosis, 34.5%. Among patients with a consultation, 98% agreed to discuss advance directives; 65% of African Americans and 70% of Hispanics elected DNR status. Inpatient deaths were 46%; 74% of decedents agreed to DNR orders. Discharged patients referred to hospice were 29%., CONCLUSION: Palliative medicine consultations resulted in timely completion of DNR orders and were positively associated with DNR election and hospice enrollment.
2013
Sacco J; Deravin Carr DR; Viola D
The American Journal Of Hospice & Palliative Care
2013
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Journal Article
<a href="http://doi.org/10.1177/1049909112450941" target="_blank" rel="noreferrer">10.1177/1049909112450941</a>
Predictors of Symptoms and Site of Death in Pediatric Palliative Patients With Cancer at End of Life
end of life; decision making; cancer; site of death; treatment choice
OBJECTIVE: To describe how preferences and treatment influence symptoms at end of life and site of death in pediatric cancer. METHODS: We included 61 pediatric palliative patients with cancer whose parents previously participated in a study that elicited preferences for aggressive chemotherapy versus supportive care alone and who subsequently died. Main outcomes were severe pain and dyspnea proximal to death and site of death. RESULTS: Choice of aggressive chemotherapy predicted significantly more severe pain (odds ratio [OR] 3.1, 95% confidence interval [CI] 1.0-9.6; P = .049). Intravenous chemotherapy 4 weeks before death predicted severe dyspnea (OR 15.8, 95% CI 3.7-67.5; P < .001) and death outside the home (OR 0.3, 95% CI 0.1-0.9; P = .038). CONCLUSIONS: Parental choice of aggressive chemotherapy and more aggressive treatment proximal to death predicted more pain, dyspnea, and death in hospital. Strategies to improve quality of life are needed.
2013-07
Schindera C; Tomlinson D; Bartels U; Gillmeister Biljana; Alli A; Sung L
The American Journal Of Hospice & Palliative Care
2013
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Journal Article
<a href="http://doi.org/10.1177/1049909113497419" target="_blank" rel="noreferrer">10.1177/1049909113497419</a>
Attitudes About Palliative Care: A Comparison of Pediatric Critical Care and Oncology Providers
IntroductionPediatric critical care and oncology providers care for patients who have life-threatening or serious illness, yet they receive little palliative care education.ObjectiveCompare oncology and critical care providers' attitudes regarding palliative care.MethodsAn electronic survey assessed respondents' opinions of whether, when, and why palliative care should be utilized.ResultsResponse rate was 49%. Critical care physicians were more likely to incorporate palliative care for psychosocial support; oncologists for symptom control. Those with palliative care education were more likely to involve in palliative care, did so earlier and for reasons other than end-of-life planning.ConclusionsOncology and critical care providers utilized palliative care for different reasons.
2013-08
Atwood MA; Hoffmann RG; Yan Ke; Lee KJ
The American Journal Of Hospice & Palliative Care
2013
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Journal Article
<a href="http://doi.org/10.1177/1049909113500844" target="_blank" rel="noreferrer">10.1177/1049909113500844</a>
End-of-Life Care Policies and Practices in Pediatric Skilled Nursing Facilities
Although most children with intellectual and developmental disabilities reside in the community, a subset of children with severe intellectual disability and complex medical needs reside in pediatric skilled nursing facilities. These children have elevated mortality with end-of-life care (EOLC) routinely provided. The present study explored policies and practice in such settings by surveying administrators, nursing directors, and medical directors in facilities across the United States. In addition to EOLC policies and practices, staff reported on their understanding of definitions of do-not-resuscitate orders, family involvement in EOLC planning, and the availability of in-service training. The presence of an official EOLC policy was associated with higher ratings of perception of effectiveness among staff. Staff felt more prepared and comfortable providing EOLC when in-service training was provided.
2013-10
Friedman SL; Helm DT; Woodman AC
The American Journal Of Hospice & Palliative Care
2013
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Journal Article
<a href="http://doi.org/10.1177/1049909113504981" target="_blank" rel="noreferrer">10.1177/1049909113504981</a>
Pediatric Palliative Care: Using Miniature Chairs to Facilitate Communication
Good communication is essential but sometimes challenging in pediatric palliative care. We describe 3 cases whereby miniature chairs made of various materials and colors were used successfully to encourage communication among pediatric patients, family, and health care professionals. This chair-inspired model may serve as a simple tool to facilitate complex discussions and to enable self-expression by children in the pediatric palliative care setting.
2013-10
Chin LE; Loong Lam Chee; Ngen Chin Cheuk; Beng TS; Shireen C; Kuan Wong Sook; Shaw R
The American Journal Of Hospice & Palliative Care
2013
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Journal Article
<a href="http://doi.org/10.1177/1049909113509001" target="_blank" rel="noreferrer">10.1177/1049909113509001</a>
Cardiopulmonary resuscitation in patients with cancer.
Humans; Resuscitation Orders; quality of life; DNAR; Palliative Care; Neoplasms/th [Therapy]; decision making; cardiopulmonary resuscitation
Cancer is the second leading cause of death in the United States, with most of these deaths taking place in the hospital setting. Discussions on end-of-life care and on cardiopulmonary resuscitation in particular are an important component in the management of patients with cancer. Clinical decision making and respect for patient autonomy dictate that health care providers provide their patients with accurate information on the expected outcomes of cardiopulmonary resuscitation. This article reviews those factors that affect the outcome of cardiopulmonary resuscitation in patients with cancer and provides recommendations on obtaining do-not-resuscitate orders in these patients.
2007
Varon J; Marik PE
The American Journal Of Hospice & Palliative Care
2007
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Journal Article
<a href="http://doi.org/10.1177/1049909107301485" target="_blank" rel="noreferrer">10.1177/1049909107301485</a>
The use of pediatric advance directives: a tool for palliative care physicians.
Child; Humans; United States; Personal Autonomy; decision making; DNAR; Palliative Care/es [Ethics]; Palliative Care/og [Organization & Administration]; Advance Care Planning/es [Ethics]; Right to Die/lj [Legislation & Jurisprudence]; Advance Care Planning/og [Organization & Administration]; Palliative Care/px [Psychology]; Child Advocacy; Pediatrics/og [Organization & Administration]; Child Advocacy/es [Ethics]; Child Advocacy/lj [Legislation & Jurisprudence]; Child Advocacy/px [Psychology]; Minors/lj [Legislation & Jurisprudence]; Minors/px [Psychology]; Parental Consent/es [Ethics]; Parental Consent/lj [Legislation & Jurisprudence]; Parental Consent/px [Psychology]; Patient Participation/lj [Legislation & Jurisprudence]; Patient Participation/px [Psychology]; Pediatrics/es [Ethics]; Right to Die/es [Ethics]
Although laws such as the Patient Self-Determination Act encourage individuals to address their end-of-life treatment preferences using advance directives, the wishes of children have traditionally been ignored or, perhaps even worse, overruled. Given that there is a substantial body of research indicating that children are capable of making mature decisions when faced with terminal illness, the author proposes granting minors, especially older minors, the right to participate in making end-of-life decisions. Children who complete advance directives benefit in multiple ways. Adopting this approach could benefit patients by demonstrating respect for patient autonomy and informing parents and providers that the minor may be ready to stop aggressive treatment.
2008
Zinner SE
The American Journal Of Hospice & Palliative Care
2008
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Journal Article
<a href="http://doi.org/10.1177/1049909108322294" target="_blank" rel="noreferrer">10.1177/1049909108322294</a>
An Educational Program in a Pediatric Hospice Setting
Canuck Place Children's Hospice, a family-centered pediatric hospice in Vancouver, Canada, provides family support and respite, pain and symptom management, and end-of-life care. One of the goals of pediatric hospice palliative care is to create an environment that supports a normal way of life and enhances quality of life. At Canuck Place, a unique school program for children with progressive life-threatening illnesses has been set up to meet this goal. This article describes the Canuck Place educational program, gives insights into the importance and challenges of providing a complete school experience, and discusses the expanded role of the teacher in the pediatric hospice setting.
2009
Wood I
The American Journal Of Hospice & Palliative Care
2009
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Journal Article
<a href="http://doi.org/10.1177/1049909108328608" target="_blank" rel="noreferrer">10.1177/1049909108328608</a>
Symptom Variability During Repeated Measurement Among Hospice Patients With Advanced Cancer
Aim: In this prospective study, we explored symptom variability in patients with cancer during repeated measurements. METHODS: Patients with cancer admitted to an inpatient hospice completed a daily questionnaire throughout their admission. The questionnaire consisted of 5 visual analogue scales (VAS) for anxiety, depression, nausea, pain, and sedation and 3 verbal rating scales (VRS) for depression, pain, and vomiting. Data from those who completed 5 consecutive days were used for the primary analysis. We used all available data points to compare VAS and VRS. An index was developed to assess for daily symptom variability. Results/Discussion: A total of 125 hospice inpatients were enrolled; 46 (38%) completed 3 consecutive daily questionnaires and 30 (24%), 5 days. We found (1) a statistically significant decrease in severity of symptoms present on admission, (2) new symptoms developed, (3) consequently overall symptom prevalence on days 1 and 5 appeared unchanged, (4) high daily symptom variability as demonstrated by the variability index and also changing daily symptom interrelationships, (5) demographic characteristics influenced symptom patterns on admission and subsequently, (6) severe pain predicted more frequent and severe symptom burden only on admission, (7) severe depression predicted more frequent and severe symptom burden on admission and thereafter, (8) VAS scores for depression and pain did not correspond with discrete VRS categories (mild, moderate, severe). CONCLUSIONS: (1) Symptom studies in advanced disease while difficult to conduct yield valuable information, (2) symptom relationships changed daily; strict timing of data collection is crucial for data analysis, (3) symptom monitoring following admission is an overlooked measure of risk assessment, (4) symptom prevalence studies alone for treatment follow-up may be misleading, (5) depression is an important predictor of symptoms and need to be more aggressively assessed and treated, (6) demographic characteristics may help identify symptom patterns and better direct treatment, (7) VRS rather than VAS was more reliable for assessing symptoms in hospice cancer patients.
2009
Lasheen W; Walsh D; Hauser K; Gutgsell T; Karafa MT
The American Journal Of Hospice & Palliative Care
2009
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Journal Article
<a href="http://doi.org/10.1177/1049909109338352" target="_blank" rel="noreferrer">10.1177/1049909109338352</a>
The Stress Process in Palliative Cancer Care: A Qualitative Study on Informal Caregiving and its Implication for the Delivery of Care
Parent caregivers
OBJECTIVE: The primary objective of this study was to examine how the comprehensive nature of the Stress Process Model could elucidate on the stressors associated with caring for a palliative cancer patient. Method: A qualitative research strategy involving home-based face-to-face interviews with 12 bereaved family caregivers was used to examine the caregiving experience. RESULTS: The primary stressors associated with caring for the palliative cancer care patients stemmed from care recipient symptoms and personal care needs. The absence of adequate support from the formal health care delivery system was a consistent message from all participants. There was evidence of financial stress primarily associated with the purchase of private home care to supplement formal care. In contrast, the resources that family caregivers relied on to moderate the stressful effects of caregiving included extended family, friends, and neighbors. While the stress of direct caregiving was high, the study revealed that formal care was also a significant source of stress for family caregivers. Conclusion: It was concluded that an appropriately financed, integrated system of care that followed a person-centered philosophy of care would best meet the needs of the patient and his or her family.
2009
Brazil K; Bainbridge D; Rodriguez C
The American Journal Of Hospice & Palliative Care
2009
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Journal Article
<a href="http://doi.org/10.1177/1049909109350176" target="_blank" rel="noreferrer">10.1177/1049909109350176</a>
Compassion fatigue: what is it? Why does it matter? Recognizing the symptoms, acknowledging the impact, developing the tools to prevent compassion fatigue, and strengthen the professional already suffering from the effects
Compassion fatigue (CF) is recognizable. It erodes the professional's ability to function at an optimum level. Depression, caregiver stress, secondary trauma, and post traumatic stress syndrome (PTSD) are very much a part of the daily landscape for today's professional. The costs are many: staff turnover, loss of self-worth, diminished productivity, poor morale, and more. We in the helping professions must acknowledge the syndrome and validate its impact on professional staff. Giving lip service to ''staff support'' is not enough. We must fully understand how CF comes about and how we can effectively support those suffering its debilitating consequences.
2010
Showalter SE
The American Journal Of Hospice & Palliative Care
2010
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Journal Article
<a href="http://doi.org/10.1177/1049909109354096" target="_blank" rel="noreferrer">10.1177/1049909109354096</a>
Adolescents with life-threatening illnesses
Adolescent Transitions
Adolescents have unique physical and psychosocial needs. Adolescents want to gain autonomy, yet they must still rely on their parents for support. These unique needs are further complicated by a life-threatening illness. Adolescents with life-threatening illnesses must rely on their parents, due to legal aspects of decision making, and they also face potential loss of peer interaction as they spend more time in hospitals and away from their friends. Adolescents may also be concerned with fertility, reproduction, and sexuality, issues that are often not addressed in palliative care programs. To meet the unique needs of adolescents, specific palliative care programs may need to be developed.
2010
Knapp C; Quinn GP; Murphy D; Brown R; Madden V
The American Journal Of Hospice & Palliative Care
2010
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Journal Article
<a href="http://doi.org/10.1177/1049909109358310" target="_blank" rel="noreferrer">10.1177/1049909109358310</a>
Pediatric palliative care: feedback from the pediatric intensivist community
Child; Humans; United States; Intensive Care Units; Attitude of Health Personnel; Questionnaires; Attitude to Death; Professional-Family Relations; Professional Competence; Palliative Care/organization & administration; Continuity of Patient Care/organization & administration; Pediatrics/organization & administration; Pediatric/organization & administration; Terminal Care/organization & administration
With the emergence of a more formalized field of pediatric palliative care (PPC), it is important for individuals and organizations involved in PPC to gather input from patients with life-threatening/life-limiting conditions, their families, and their health care providers. We report the results of a survey completed in late 2007 of the Section on Critical Care of the American Academy of Pediatrics (AAP). The 102 respondents provided information regarding their clinical and educational experiences, perceived barriers to the provision of palliative care in the intensive care environment, currently available PPC resources, and the usefulness of palliative care specialization in the pediatric intensive care unit.
2010
Jones PM; Carter BS
The American Journal Of Hospice & Palliative Care
2010
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Journal Article
<a href="http://doi.org/10.1177/1049909109360410" target="_blank" rel="noreferrer">10.1177/1049909109360410</a>
The triad that matters: palliative medicine, code status, and health care costs.
Female; Humans; Male; Aged; Middle Aged; Equipment and Supplies; hospice; Patient Admission; Emergency Service; 80 and over; retrospective studies; DNAR; DNAR Outcomes; Surgical Procedures; Critical Illness/ep [Epidemiology]; Palliative Care/ut [Utilization]; Critical Illness/ec [Economics]; Emergency Service; Hospital Costs/sn [Statistics & Numerical Data]; Intensive Care/ec [Economics]; Length of Stay/ec [Economics]; Palliative Care/ec [Economics]; Code status; Direct Service Costs/sn [Statistics & Numerical Data]; health care cost; Hospital/ec [Economics]; Hospital/ut [Utilization]; Intensive Care/ut [Utilization]; Laboratories; Length of Stay/sn [Statistics & Numerical Data]; Operative/ec [Economics]; palliation; Radiology Department; Respiratory Care Units/ec [Economics]; United States/ep [Epidemiology]
INTRODUCTION: Delayed discussion of a patient's code status can lead to shortsighted care plans that increase hospital length of stay (LOS) and costs., METHODS: Retrospective study compared intensive care unit (ICU) patients who accepted verses rejected palliation and examined the relationships between 5 predictor variables with the outcome variables ICU LOS and total hospital LOS, and total direct and variable hospital cost., RESULTS: A significant number of patients who accepted palliative care agreed to a hospice referral or expired in the hospital. The relationships between days until a family conference, do-not-resuscitate (DNR) order, and the number of invasive procedures were significant., CONCLUSIONS: The amount of time that expires until the issue of code status was settled to clearly related to utilization of hospital resources.
2010
Celso BG; Meenrajan S
The American Journal Of Hospice & Palliative Care
2010
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Journal Article
<a href="http://doi.org/10.1177/1049909110363806" target="_blank" rel="noreferrer">10.1177/1049909110363806</a>
Qualitative Analysis of Consults by a Pediatric Advanced Care Team During its First Year of Service
Phenomenologic analysis of initial consults provided during the first year of a new Pediatric Advanced Care Team (PACT) program provides essential understanding of the experience and inform program direction and future clinical research. Parents bring to the consult a desire to remain experts in their children's lives yet experience vulnerability as they seek assistance in making critical decisions often under conditions of disquieting uncertainty. Dynamic communication efforts involving the referring providers, PACT team members, and family are a key influence in facilitating consults' stated goals and in establishing the integrated palliative paradigm in a tertiary care environment. Validation was provided for a new research infrastructure that will function concurrently with the PACT clinical program in this rapidly evolving field.
2010
Byrne M; Tresgallo M; Saroyan J; Granowetter L; Valoy G; Schechter W
The American Journal Of Hospice & Palliative Care
2010
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Journal Article
<a href="http://doi.org/10.1177/1049909110376626" target="_blank" rel="noreferrer">10.1177/1049909110376626</a>
Enteral and parenteral nutrition in terminally ill cancer patients: a review of the literature
Humans; Survival Rate; Terminally Ill; Practice Guidelines as Topic; Communication; Treatment Outcome; Decision Support Techniques; Research Design; Risk Factors; Patient Selection; Activities of Daily Living; Evidence-Based Medicine; Patient Education as Topic; quality of life; Nutritional Status; Nutrition Assessment; Enteral Nutrition/adverse effects/methods/utilization; Malnutrition/etiology/therapy; Neoplasms/complications/mortality/psychology; Parenteral Nutrition/adverse effects/methods/utilization; Terminal Care/methods/psychology/utilization
Many terminally ill patients who are able to eat appear to be eating less than they should, losing weight, and becoming malnourished, and many others develop difficulties with eating. These symptoms and signs are usually a marker of advanced cancer, rather than the cause of decreasing functional status, and providing supplemental nutrition rarely changes the course of the disease. This article reviews evidence on issues relevant to enteral and parenteral nutrition in patients with advanced cancer, including benefits, risks, and discomforts; how these types of nutrition are used and perceived, and how decisions are made; and how decision-making might be improved.
2006
Dy SM
The American Journal Of Hospice & Palliative Care
2006
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Journal Article
<a href="http://doi.org/10.1177/1049909106292167" target="_blank" rel="noreferrer">10.1177/1049909106292167</a>
The efficacy and side effects of continuous infusion intravenous morphine (CIVM) for pain and symptoms due to advanced cancer
Female; Humans; Male; United States; Pain; Adult; Analgesics; Aged; Middle Aged; 80 and over; retrospective studies; Palliative Care/methods; Infusions; Intravenous; Opioid/administration & dosage/adverse effects; Intractable/drug therapy/etiology; Morphine/administration & Neoplasms/complications
Morphine is the strong opioid of choice in the management of moderate-to-severe chronic cancer pain. The preferred route of administration is oral, in individually titrated doses, regularly scheduled around the clock We conducted a retrospective study of continuous intravenous morphine (CIVM) in a palliative medicine program in 107 consecutive patients. The results suggest CIVM is an effective, safe, and versatile method of morphine administration when used with a defined protocol. Efficacy was similar to that obtained by others with intravenous morphine sulfate and also for oral morphine. Safety was suggested by the low incidence of dose-limiting side effects, most of which responded to dose reduction. Particularly noteworthy was the flexibility of CIVM with dose reduction in 20 percent.
2002
Glare P; Walsh D; Groh E; Nelson KA
The American Journal Of Hospice & Palliative Care
2002
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Journal Article
<a href="http://doi.org/10.1177/104990910201900512" target="_blank" rel="noreferrer">10.1177/104990910201900512</a>
Hospital charges for a community inpatient palliative care program
Female; Humans; Male; Adult; Aged; Middle Aged; Time Factors; Hospitals; Chi-Square Distribution; Tennessee; 80 and over; Comparative Study; referral and consultation; Palliative Care/economics/organization & administration/utilization; Cost Control; Hospital Costs/statistics & numerical data; Community/economics/utilization; Hospital Charges/statistics & numerical data; Length of Stay/economics/statistics & numerical data; Patient Admission/economics; Patient Discharge/economics
Defining financial parameters of palliative care (PC) is important for providing sustainable programming. In our study, we evaluated hospital length of stay (LOS) and charges for the first 164 inpatient PC consultations performed by the Advanced Illness Assistance (AIA) team at Blount Memorial Hospital (BMH). These AIA patients had a median LOS of 11 days (range, 3-114 days), mean total charges per patient of 65,795 dollars, and mean daily charges of 3,809 dollars. Higher mean daily charges (p = 2.74 E-08, chi-square) were associated with patients who received consultation because of nonphysical symptom reasons. Patients were followed in PC consultation (AIA follow-up days) for a median of five days (range, 1-48), and had mean daily charges of 3,117 dollars. These mean daily charges were 414 dollars less than the charges for the five days prior to PC consultation (pre-AIA days) (p = 0.04, t-test). There was a significant decrease in laboratory and imaging charges during AIA follow-up (p = 0.04, t-test). The study included a reference group of patients whose information was obtained retrospectively from the BMH Atlas (MediQual, Marlborough, MA) database. These reference group patients were hospitalized at BMH during the same time, but they were not seen by the AIA team. The reference group was matched by Diagnosis Related Group (DRG), Admission Severity Grade (ASG), and disposition to the AIA patients. The Atlas patients had a shorter median LOS of six days (range, 1-105 days), and significantly greater mean daily charges of 4,105 dollars (p = 0.006, t-test) compared with AIA patients. Mean daily charges decreased for Atlas patients, as their day of discharge approached (p < 0.001). Estimates of potential charge savings were calculated in two ways: 1) by evaluating the effect of decreasing the LOS of Atlas patients with long LOS (more than seven days) to the level of AIA patients with long LOS, and 2) by comparing the actual mean patient charges during AIA follow-up with using the pre-AIA mean daily charges during the AIA follow-up period and correcting for the effect of decreasing charges that occurred as discharge approached. The estimated savings achieved by decreasing long LOS were more than 100,000 dollars per year, and estimated savings achieved using AIA follow-up charges were more than 1,801,930 dollars per year.
2004
Cowan JD
The American Journal Of Hospice & Palliative Care
2004
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/10.1177/104990910402100306" target="_blank" rel="noreferrer">10.1177/104990910402100306</a>
Ketamine-fentanyl-midazolam infusion for the control of symptoms in terminal life care
Female; Humans; Male; Pain Measurement; Aged; Middle Aged; Treatment Outcome; Drug Therapy; 80 and over; Biomarkers of Pain; retrospective studies; Infusions; Intravenous; Neoplasms/complications; Receptors; Pain/diagnosis/drug therapy/etiology; Terminal Care/methods; Combination; N-Methyl-D-Aspartate/antagonists & inhibitors; Analgesics/pharmacology/therapeutic use; Cognition Disorders/drug therapy/etiology; Fentanyl/pharmacology/therapeutic use; Hypnotics and Sedatives/pharmacology/therapeutic use; Ketamine/pharmacology/therapeutic use; Midazolam/pharmacology/therapeutic use; Psychomotor Agitation/drug therapy/etiology
In this report, we describe nine terminally ill patients with metastatic cancer who were treated with an intravenous infusion consisting of ketamine (2 mg/ml)/fentanyl (5 micrograms/ml)/midazolam (0.1 mg/ml) (K/F/M) to control pain after traditional analgesic therapies were unsuccessful. In addition to pain, all patients exhibited some symptoms of cognitive compromise and agitation. After initiation of the K/F/M infusion, all patients exhibited some degree of qualitative improvement in these symptoms as well as in overall pain control. We feel that these observations warrant reporting of the efficacy of this infusion for the treatment of uncontrolled pain and agitation in terminally ill patients when the traditional methods of pain control are inadequate.
2000
Berger JM; Ryan A; Vadivelu N; Merriam P; Rever L; Harrison P
The American Journal Of Hospice & Palliative Care
2000
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/10.1177/104990910001700213" target="_blank" rel="noreferrer">10.1177/104990910001700213</a>