"Between Wings of Hope and Fear": Muslim Parents' Experiences with the American Health Care System
qualitative; barrier; health; transcription; pediatrics; communication; human; article; child; female; male; interview; fear; population; sample; patients; research; evaluation; care; clinical; genetic; person; analysis; size; system; content; semi; structured; United; marginalized; married; Muslim; States; thematic; wing
Background and Objectives: Historically marginalized religious and cultural groups are at risk for lower quality of care than majority groups. No study to date specifically queries Muslim experiences with the American health care system (AHCS). We performed a thematic analysis of Muslim parents' interactions with the AHCS and how their background informs their approach to care. Method(s): This was a qualitative study of Muslim parents of children with life-limiting conditions in the Research Triangle Area from December 2019 to March 2019. We conducted semistructured interviews with parents to assess their experiences with the AHCS. We probed interview transcripts using descriptive content analysis with NVivo10. Result(s): We interviewed 10 parents in the Research Triangle Area. All patients were female, most were married, most spoke at least one other language in addition to English, and most were not born in the United States. Several themes emerged highlighting open communication with care teams, willingness to share religious affiliations, and the importance of leaning into faith and accepting God's will. Conclusion(s): A thematic analysis of Muslim parents' interactions with the AHCS describes value in honest communication, mixed concerns about how providers will react to their religious affiliation, and emphasizes the importance of leaning heavily into faith and accepting God's plan. Future studies evaluating needs of Muslim patients, especially those with different diagnoses, language barriers, and a larger sample size will further delineate needs to minimize inequalities in care.
Kolmar A; Kamal AH; Steinhauser KE
Journal of Palliative Medicine
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/10.1089/jpm.2022.0154">10.1089/jpm.2022.0154</a>
"hope For The Best, Prepare For The Worst": A Qualitative Interview Study On Parents' Needs And Fears In Pediatric Advance Care Planning.
Advance Care Planning; Advance Directive; Decision-making; Pediatrics; Resuscitation Orders; Terminal Care
BACKGROUND:
Pediatric advance care planning is advocated by healthcare providers because it may increase the chance that patient and/or parent wishes are respected and thus improve end-of-life care. However, since end-of-life decisions for children are particularly difficult and charged with emotions, physicians are often afraid of addressing pediatric advance care planning.
AIM:
We aimed to investigate parents' views and needs regarding pediatric advance care planning.
DESIGN:
We performed a qualitative interview study with parents of children who had died from a severe illness. The interviews were analyzed by descriptive and evaluation coding according to Saldaña.
SETTING/PARTICIPANTS:
We conducted semi-structured interviews with 11 parents of 9 children. Maximum variation was sought regarding the child's illness, age at death, care setting, and parent gender.
RESULTS:
Parents find it difficult to engage in pediatric advance care planning but consider it important. They argue for a sensitive, individualized, and gradual approach. Hope and quality of life issues are primary. Parents have many non-medical concerns that they want to discuss. Written advance directives are considered less important, but medical emergency plans are viewed as necessary in particular cases. Continuity of care and information should be improved through regular pediatric advance care planning meetings with the various care providers. Parents emphasize the importance of a continuous contact person to facilitate pediatric advance care planning.
CONCLUSION:
Despite a need for pediatric advance care planning, it is perceived as challenging. Needs-adjusted content and process and continuity of communication should be a main focus in pediatric advance care planning. Future research should focus on strategies that facilitate parent engagement in pediatric advance care planning to increase the benefit for the families.
Lotz JD; Daxer M; Jox RJ; Borasio GD; Fuhrer M
Journal Of Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1177/0269216316679913
"If We Build It, Will They Come?" A Cohort Study of Family Utilization of a Pediatric-Specific Hospice Home
end-of-life care; health care utilization; hospice; location of death; palliative care; pediatrics
Objective: To determine whether families would make use of a pediatric-specific inpatient hospice facility for end-of-life care for children. Background: Location of end-of-life care and death are important considerations when treating children with life-limiting conditions. There is very limited research on utilization of an inpatient hospice facility for end-of-life care if a pediatric-specific facility is available. We examined changes in family utilization of inpatient hospice services with the availability of an inpatient pediatric hospice facility (PHF). Methods: We conducted a retrospective cohort study with data collected on location of end-of-life care and death five years prior to and five years following the opening of a PHF that receives referrals from a large children s hospital in United States. Two data sources from the hospice organization were used: (1) a dataset on origins and outcomes of referrals to pediatric inpatient hospice care and (2) a dataset on location of death for all pediatric patients who had any contact with the hospice system. Chi-square analyses were conducted to assess the associations between the PHF opening and referral outcomes and location of death. Results: Significant results were found with respect to both referral outcomes and location of death. Engagement in inpatient hospice care increased between 2- and 10-fold following the opening of the inpatient PHF. The percent of patients who died in an inpatient hospice unit also increased significantly with the opening of the pediatric facility. Discussion: Results of this study show that providers are more likely to refer, and families are more likely to use inpatient hospice services when pediatric facilities are available. These results are important for establishing an evidence base in support for increasing access to PHFs.
Shaw T; Berkel C; Bernatavicius W; Berger K
Journal of Palliative Medicine
2022
<a href="http://doi.org/10.1089/jpm.2021.0513" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0513</a>
"It Can Be Hard But It's Not Bad": Three Questions to Solicit Caregiver Perceptions of Benefits and Burdens to Participating in Pediatric Palliative Care Research
benefits and burdens; end-of-life research; palliative care research; pediatrics
Background: To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and their families is essential. Design: In a grounded theory study with three data points (T1, T2, and T3), we evaluated benefits and burdens of family caregiver participation at T3. English-speaking caregivers participating in palliative or end-of-life decisions for their child with incurable cancer or their seriously ill child in the intensive care unit participated. Thirty-seven caregivers (n = 22 from oncology; n = 15 from intensive care) of 33 children completed T3 interviews; most were mothers (n = 25, 67.6%), African American (n = 18, 48.6%), and married (n = 28, 75.7%). Measurement: Benefits and burdens were assessed by three open-ended questions asked by an interviewer during a scheduled telephone contact. Responses were analyzed using descriptive semantic content analysis techniques and themes were extracted. Results: All 37 T3 participants completed the 3 questions, resulting in no missing data. The most frequently reported themes were of positive personal impact: "Hoping to help others," "Speaking about what is hard is important," and "Being in the study was sometimes hard but not bad." Conclusions: No caregiver described the study as burdensome. Some acknowledged that answering the questions could evoke sad memories, but highlighted benefits for self and others. Attrition somewhat tempers the emphasis on benefits. Documenting perceived benefits and burdens in a standardized manner may accurately convey impact of study participation and yield new knowledge.
Reggio C; Mowbray C; Waldron MK; Rood AL; Sibilia G; Mooney-Doyle K; Hinds PS
Journal of Palliative Medicine
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/10.1089/jpm.2020.0618" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0618</a>
"there's Just No Way to Help, and They Did." Parents Name Compassionate Care as a New Domain of Quality in Pediatric Home-Based Hospice and Palliative Care
compassion; home-based palliative care; hospice care; pediatric hospice care
Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs. Objective(s): The goal of this project was to identify and define parent/caregiver-prioritized domains of family-centered care in HBHPC by performing semistructured interviews of parents/caregivers ("parents") across Ohio whose children have received HBHPC. We hypothesized that the 10 provider-prioritized domains and their definitions, as identified in our previous research, would be modified and augmented by parents for application in the pediatric HBHPC setting. Method(s): This was a qualitative study utilizing semistructured interviews of bereaved parents of children who were enrolled in a pediatric HBHPC program at the three sites from 2012 to 2016 and parents of children who were currently enrolled in these programs for at least a year. Result(s): Parent-prioritized thematic codes mapped to 9 of the 10 provider-prioritized domains of quality HBHPC; none mapped to the domain "Ethical and Legal Aspects of Care." Although most of the provider-prioritized domains are pertinent to parents, parents defined these domains differently, deepening our understanding and perspective of quality within each domain. An 11th domain, Compassionate Care, was created and defined based on emergent themes. Conclusion(s): Parent/caregiver-prioritized domains of quality in pediatric HBHPC map closely to provider-prioritized domains, but parents define these domains differently. Parents also prioritize Compassionate Care as a new domain of quality in pediatric HBHPC. Measuring the quality of care provided in HBHPC programs through this broader perspective should enable the selection of measures which are truly patient- and family-centered. © Copyright 2020, Mary Ann Liebert, Inc., publishers 2020.
Thienprayoon R; Grossoehme D; Humphrey LM; Pestian T; Frimpong-Manso M; Malcolm H; Kitamura E; Jenkins R; Friebert S
Journal of Palliative Medicine
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/10.1089/jpm.2019.0418" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0418</a>
"What Would Give Her the Best Life?": Understanding Why Families Decline Pediatric Home Ventilation
pediatric decision making; pediatric palliative care; pediatric quality of life; Qualitative Research; tracheostomy; Ventilators; Mechanical
Background: Families who must decide about pediatric home ventilation rely on the clinicians who counsel them for guidance. Most studies about pediatric home ventilation decisions focus on families who opt for this intervention, leaving much unknown about the families who decline. Objective: To describe the rationales of families who decline home ventilation. Design: Semi-structured interview study. Setting/Subjects: We interviewed 16 families in hospitals across 3 U.S. states, identified by their clinicians as previously deciding to not pursue home ventilation via tracheostomy within the past five years. Measurements: Targeted content and narrative analyses were used to understand family intentions and reasons for declining. Results: The clinical and social context varied among the 16 families in this study. Families' intentions in saying "no" fell into two categories: (1) definitive "No": Families who stood firm on in their decision and (2) contingent "No": Families who may consider this in the future. Families described four reasons why their child did not receive home ventilation: (1) concern about medical impacts, (2) concern about physical and/or communication restrictions, (3) concern that there would be no clear health benefit, and (4) concern about no clear meaningful life. Most families mentioned all four reasons, but concern about no clear meaningful life predominated. Conclusions: Though these families did not see home ventilation as an appropriate option, each reported a complex interplay of intentions behind and reasons for declining. Clinicians who counsel families about home ventilation could share the reasons that families commonly decline this intervention to facilitate a balanced discussion.
Shipman KJ; Mercer AH; Raisanen JC; Jabre NA; Vo HH; Miles A; Shepard J; Henderson CM; Boss RD; Wilfond BS
Journal of Palliative Medicine
2023
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.2022.0426" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0426</a>
“It Can Be Hard But It's Not Bad”: Three Questions to Solicit Caregiver Perceptions of Benefits and Burdens to Participating in Pediatric Palliative Care Research
benefits and burdens; end-of-life research; palliative care research; pediatrics
Background: To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and their families is essential.Design: In a grounded theory study with three data points (T1, T2, and T3), we evaluated benefits and burdens of family caregiver participation at T3. English-speaking caregivers participating in palliative or end-of-life decisions for their child with incurable cancer or their seriously ill child in the intensive care unit participated. Thirty-seven caregivers (n = 22 from oncology; n = 15 from intensive care) of 33 children completed T3 interviews; most were mothers (n = 25, 67.6%), African American (n = 18, 48.6%), and married (n = 28, 75.7%).Measurement: Benefits and burdens were assessed by three open-ended questions asked by an interviewer during a scheduled telephone contact. Responses were analyzed using descriptive semantic content analysis techniques and themes were extracted.Results: All 37 T3 participants completed the 3 questions, resulting in no missing data. The most frequently reported themes were of positive personal impact: “Hoping to help others,” “Speaking about what is hard is important,” and “Being in the study was sometimes hard but not bad.”Conclusions: No caregiver described the study as burdensome. Some acknowledged that answering the questions could evoke sad memories, but highlighted benefits for self and others. Attrition somewhat tempers the emphasis on benefits. Documenting perceived benefits and burdens in a standardized manner may accurately convey impact of study participation and yield new knowledge.
Reggio C; Mowbray C; Waldron MK; Rood AL; Sibilia G; Mooney-Doyle K; Hinds PS
Journal of Palliative Medicine
2021
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<a href="http://doi.org/10.1089/jpm.2020.0618" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0618</a>
“Teacher”
2016-06
Rosenberg AR
Journal Of Palliative Medicine
2016
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Journal Article
<a href="http://doi.org/10.1089/jpm.2016.0233" target="_blank" rel="noreferrer">10.1089/jpm.2016.0233</a>
A Call For Increased Paediatric Palliative Care Research: Identifying Barriers
Public Environmental & Occupational Health; Medicine General & Internal; Health Care Sciences & Services
Editorial - The evidence base underpinning paediatric palliative care (PPC) needs to be expanded and be made robust if advances in practice and reduction in suffering are to be achieved. While current guidance1 emphasises the need to include children and young people (CYP), both those with good health and those with life-limiting conditions (LLCs) or life-threatening illnesses (LTIs) in decisions about health and health research,2 it is commonly accepted that this is not easily achieved in practice. Challenges faced by researchers aiming to recruit CYP with LLCs or LTIs and their families are numerous, including small sample sizes and limited funding as well as difficulties with research ethics committees, the unpredictable nature of the illnesses and society’s perceptions of the potential physical and psychological burden for participants and their families...
Emma Beecham; Briony F Hudson; Linda Oostendorp; Bridget Candy; Louise Jones; Vickey Vickerstaff; Monica Lakhanpaul; Paddy Stone; Lizzie Chambers; Doug Hall; Kate Hall; Thines Ganeshamoorthy; Margaret Comac; Myra Bluebond-Langner
Journal Of Palliative Medicine
2016
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<a href="%20https%3A//doi.org/10.1177/026921631664808">10.1177/0269216316648087</a>
A Descriptive Report Of End-of-life Care Practices Occurring In Two Neonatal Intensive Care Units
Death; Decision Making; Withdrawal; Patterns; Perspectives; Nicu; Infant; Neonatal; Newborns; Support Implementation; End Of Life Care; Public Environmental & Occupational Health; Palliative Care; Medicine General & Internal; Health Care Sciences & Services; Neonatal Intensive Care Unit; Palliative Care; Anesthesia; Analgesics; Intensive Care
Death; End Of Life; Neonatal; Neonatal Intensive Care Unit; Palliative Care
BACKGROUND:
In Canada and other developed countries, the majority of neonatal deaths occur in tertiary neonatal intensive care units. Most deaths occur following the withdrawal of life-sustaining treatments.
AIM:
To explore neonatal death events and end-of-life care practices in two tertiary neonatal intensive care settings.
DESIGN:
A structured, retrospective, cohort study.
SETTING/PARTICIPANTS:
All infants who died under tertiary neonatal intensive care from January 2009 to December 2013 in a regional Canadian neonatal program. Deaths occurring outside the neonatal intensive care unit in delivery rooms, hospital wards, or family homes were not included. Overall, 227 infant deaths were identified.
RESULTS:
The most common reasons for admission included prematurity (53.7%), prematurity with congenital anomaly/syndrome (20.3%), term congenital anomaly (11.5%), and hypoxic ischemic encephalopathy (12.3%). The median age at death was 7 days. Death tended to follow a decision to withdraw life-sustaining treatment with anticipated poor developmental outcome or perceived quality of life, or in the context of a moribund dying infant. Time to death after withdrawal of life-sustaining treatment was uncommonly a protracted event but did vary widely. Most dying infants were held by family members in the neonatal intensive care unit or in a parent room off cardiorespiratory monitors. Analgesic and sedative medications were variably given and not associated with a hastening of death.
CONCLUSION:
Variability exists in end-of-life care practices such as provision of analgesic and sedative medications. Other practices such as discontinuation of cardiorespiratory monitors and use of parent rooms are more uniform. More research is needed to understand variation in neonatal end-of-life care.
Lam V; Kain N; Joynt C; van Manen MA
Journal Of Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1177/0269216316634246
A Mixed-Methods Exploration of Pediatric Intensivists' Attitudes toward End-of-Life Care in Vietnam
end of life; Icu; pediatric; Vietnam
BACKGROUND: Although the need for palliative care is gaining recognition in Southeast Asia, knowledge about how decisions are made for children near the end of life remains sparse. OBJECTIVE: To explore pediatric intensivists' attitudes and practices surrounding end-of-life care in Vietnam. METHODS: This is a mixed-methods study conducted at a tertiary pediatric and neonatal intensive care unit in Hanoi. Physicians and nurses completed a quantitative survey about their views on end-of-life care. A subset of these providers participated in semistructured interviews on related topics. Analysis of surveys and interviews were conducted. Results were triangulated. RESULTS: Sixty-eight providers (33 physicians and 35 nurses) completed the quantitative survey, and 18 participated in interviews. Qualitative data revealed three overarching themes with numerous subthemes and supporting quotations. The first theme was factors influencing providers' decision-making process to escalate or withdraw treatment. Quantitative data showed that 40% of providers valued the family's ability to pay to continue life-sustaining treatment. Second, communication dynamics in decision making were highlighted; 72% of providers would be willing to override a family's wishes to withdraw life-sustaining treatment. Third, provider perceptions of death varied, with 68% regarding their patients' deaths as a personal failure. CONCLUSIONS: We elicited and documented how pediatric intensivists in Vietnam currently think about and provide end-of-life care. These findings indicate a need to strengthen palliative care training, increase family involvement in decision making, implement standardized and official do-not-resuscitate documentation, and expand pediatric hospice services at the individual, hospital, and national levels in Vietnam.
Fadadu P P; Liu J C; Schiltz B M; Xoay T D; Phuc P H; Kumbamu A; Ouellette Y
Journal of Palliative Medicine
2019
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<a href="http://doi.org/10.1089/jpm.2018.0496" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0496</a>
A pathway to advancing end-of-life education
Physician-Patient Relations; Education; Curriculum; Quality of Health Care; Medical; Human; Terminal Care; Continuing/methods
OBJECTIVE: This paper identifies key features associated with high-quality educational materials for end-of-life curriculum. METHODS: The End of Life Physician Education Resource Center (EPERC), located on the Internet at provides a clearinghouse for end-of-life materials. All materials posted on EPERC are peer reviewed by content and education experts for quality. An analysis of reviewers' ratings, from the EPERC rating form and their narrative comments, revealed common strengths and weaknesses of submitted materials. Examples of exemplar materials from the EPERC website are presented to highlight key strengths. DISCUSSION: Articulating the best qualities of submitted materials provides clear standards for those seeking to develop or adopt high quality end-of-life educational materials.
2002
Anderson R; Biernat K; Rehm J
Journal Of Palliative Medicine
2002
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Journal Article
A Profile of Children with Complex Chronic Conditions at End of Life among Medicaid Beneficiaries: Implications for Health Care Reform
Abstract Background: As the United States braces for full implementation of health care reform, the eyes of the nation are on Medicaid. The large number of newly eligible Medicaid beneficiaries may challenge health care resources and ultimately impact quality of care. This is a special concern among current Medicaid beneficiaries such as children with complex chronic conditions (CCCs) who have significant health care needs, especially at end of life (EOL). Yet, a comprehensive profile of these children is lacking. Objective: To understand the demographic and health characteristics, health care utilization, and expenditures among Medicaid children with CCCs at EOL. Methods: Our study used a retrospective cohort design with data from the 2007 and 2008 California Medicaid data files. Descriptive statistics were used to profile children in the last year of life. Results: We found a diverse group of children who suffered with serious, multiple chronic conditions, and who accessed comprehensive, multidisciplinary care. Most children had neuromuscular conditions (54%), cardiovascular conditions (46%), and cancer (30%). A majority (56%) had multiple CCCs. Children with CCCs received comprehensive care including hospital inpatient (67%), primary (82%), ancillary (87%), and other acute care services (83%); however, few children utilized hospice and home health care services (26%). Significant age differences existed among the children. Conclusions: The current California Medicaid system appears to provide comprehensive care for children at EOL. The underutilization of hospice and home health services, however, represents an opportunity to improve the quality of EOL care while potentially reducing or remaining budget neutral.
2013-11
Lindley LC; Lyon ME
Journal Of Palliative Medicine
2013
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Journal Article
<a href="http://doi.org/10.1089/jpm.2013.0099" target="_blank" rel="noreferrer">10.1089/jpm.2013.0099</a>
A Provider-Based Survey to Assess Bereavement Care Knowledge, Attitudes, and Practices in Pediatric Oncologists
BACKGROUND: Bereavement support is a core tenet of palliative care that may prove difficult for clinicians as it is time-consuming, emotionally charged, and not emphasized in pediatrics training. This project is intended to describe the opinions, knowledge, and practice of bereavement care among pediatric oncologists to identify gaps in clinical care. PROCEDURES: An internet-based survey instrument was pilot tested, refined, and distributed to pediatric oncologists in the United States. Statistical analysis was performed using SAS 9.2. RESULTS: Electronic surveys were distributed to 2,061 pediatric oncologists and 522 surveys (25%) were fully completed. Participants were asked how likely they are to engage in particular bereavement activities (phone calls, condolence cards, memorial services, family meetings, or referrals for counseling) following the death of a pediatric cancer patient. Eighty-two percent of participants, at least, sometimes engage in at least one of these activities. Being female, an attending physician, and increased time in clinical practice were predictive of active participation in bereavement care. Nearly all participants (96%) believe that bereavement care is part of good clinical care, while 8% indicate that bereavement support is not their responsibility. Lack of time and resources were the biggest barriers to providing bereavement support. CONCLUSIONS: The majority of pediatric oncologists engage in clinical practices to support bereaved families. Lack of time and physical resources pose significant barriers to clinician's efforts. Additional supports should be explored to increase pediatric oncology physician uptake of bereavement care practices.
Jensen J; Weng C; Spraker-Perlman HL
Journal Of Palliative Medicine
2017
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<a href="http://doi.org/10.1089/jpm.2015.0430" target="_blank" rel="noreferrer">10.1089/jpm.2015.0430</a>
A simple standardized method for VAS measurements in terminally ill patients
Humans; United States; Pain; quality of life; Terminally Ill/psychology; Pain Measurement/standards
2005
Zuurmond WW; Gootjes JR; Tol-Verhagen CV; Jansen WJ; Perez RS
Journal Of Palliative Medicine
2005
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Journal Article
<a href="http://doi.org/10.1089/jpm.2005.8.490" target="_blank" rel="noreferrer">10.1089/jpm.2005.8.490</a>
A Statewide Survey of Adult and Pediatric Outpatient Palliative Care Services
Abstract Background: Outpatient palliative care services can improve patient outcomes, yet little is known about their structure and characteristics. Objective: To describe the structure and characteristics of outpatient palliative care services associated with California hospitals. Design: Electronic survey. Setting/Subjects: All 377 acute care hospitals in California. Measurements: Outpatient palliative care services structure and operational characteristics, including staffing, clinical availability, and funding. Results: Overall 96% (361/377) of hospitals responded. Of the 136 hospitals with an adult palliative care service, 18% (n=24) reported an outpatient palliative care service with a mean age of 3.7 years. Of the 42 hospitals offering pediatric palliative care services, 19% (n=8) reported an outpatient palliative care service with a mean age of 3.4 years. On average, adult outpatient palliative care services see 159 new patients per year with 722 follow-up visits. Pediatric outpatient palliative care services see 10 new patients per year with 28 follow-up visits. The average staffing of adult outpatient palliative care services is 2.1 full-time equivalent (FTE; range, 0.2-12) and for pediatric outpatient palliative care services 0.7 FTE (range, 0.1-2.0). Adult outpatient palliative care services operate a mean of 3.9 days per week compared to 1.1 days per week for pediatric outpatient palliative care services. Few services provided 24/7 coverage (25% adult, 38% pediatric). Wait times for newly referred patients were 11 days for adults and 9 days for pediatrics. Most referrals are received from oncology (adult=47%, pediatric=43%). Funding for outpatient palliative care services is largely through institutional support (adult=80%, pediatric=62%), followed by foundations (adult=10.3%, pediatric=23%), billing (adult=8.8%, pediatric=0%), and philanthropy (adult=0.9%, pediatric=15%). Compared to similar data from 2007, the prevalence of outpatient palliative care services affiliated with hospitals in California has not changed significantly. Conclusions: Few California hospitals offer outpatient palliative care services. This finding has remained consistent over time. Adult and pediatric outpatient palliative care services care primarily for patients with cancer, operate part-time with modest staffing, and are funded primarily by their institution. Making the case for value to engender more institutional support, increasing billing revenue, system initiatives, and partnering with insurers may lead to the establishment of more outpatient palliative care services.
2014-08
Rabow MW; O'Riordan DL; Pantilat SZ
Journal Of Palliative Medicine
2014
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Journal Article
<a href="http://doi.org/10.1089/jpm.2014.0144" target="_blank" rel="noreferrer">10.1089/jpm.2014.0144</a>
A Survey Of Perinatal Palliative Care Programs In The United States: Structure, Processes, And Outcomes.
Fetal-abnormality; Hospice; Services; Quality Indicators; Infant; Diagnosis; Science; Health Care Sciences & Services
BACKGROUND:
Perinatal palliative care (PPC) programs are proliferating nationwide, but little is known about their structure, process, or desired outcomes, to inform future program development.
OBJECTIVE:
To explicate structure, processes, and outcomes of PPC programs, specifically how they coordinate care and manage goals of care meetings, as well as providers' perceptions of the most beneficial components of care and their expected care outcomes.
DESIGN:
Free-text response data were taken from a 48-item online survey organized around the eight domains defined by the National Consensus Project for Quality Palliative Care (NCP). Responses related to NCP Domain 1 (Structure and Process of Care) were analyzed using conventional content analysis.
SUBJECTS:
U.S. PPC program representatives (N = 75) from 30 states.
RESULTS:
The majority of programs have a care coordinator, but roles vary from direct patient care to program administration. Participants described a range of topics discussed during family meetings to determine parental goals across the perinatal period. Support and respect for parent preferences and choices were the most important components of care. Desired program outcomes include parental satisfaction with physical and psychosocial support, help with the decision-making process, opportunity to parent their infant, infant comfort, and positive personal and family growth.
CONCLUSIONS:
While PPC programs do not often measure quality, their goals are family centered, with a focus on parent satisfaction with decision making and psychosocial support. PPC programs coordinate interdisciplinary care by arranging meetings and advocating for families. More research is needed to understand parent perspectives on care provided.
Denney-Koelsch E; Black BP; Cote-Arsenault D; Wool C; Kim S; Kavanaugh K
Journal Of Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1089/jpm.2015.0536
A Tool for the Evaluation of Clinical Needs and Eligibility to Pediatric Palliative Care: The Validation of the ACCAPED Scale
assessment; clinical needs; palliative pediatric care; pediatric palliative care; validation
Background: Despite their importance, pediatric palliative care (PPC) services are still scantly diffused. In addition, eligibility criteria for PPC are quite complex. Consequently, clinicians require a tool that suggests how to refer patients with life-limiting diseases to the most appropriate service and how to properly allocate health care resources. Objective(s): Recently, the Accertamento dei bisogni Clinico-Assistenziali Complessi in PEDiatria (ACCAPED) scale has been developed by a group of experts in PPC to evaluate the specific clinical needs of pediatric patients with a life-limiting disease. This study presents the validation of the ACCAPED scale. Design(s): Validation of ACCAPED scale was pursued by means of description and analysis of clinical vignettes representing patients with challenging-to-evaluate needs who have to be referred to the most appropriate service (community care, general PPC, and specialized PPC). The evaluation of vignettes according to the clinical experience of the experts represented the gold standard against which the validity of the ACCAPED scale was tested by groups with different levels of experience (experts, pediatricians, and health care providers (HCPs) not involved in PPC). Result(s): Results show a very high concordance between the evaluation of the vignettes through the ACCAPED scale and the evaluation by the clinical experience for experts in PPC and pediatricians. A less favorable grade of concordance has been recorded for HCPs not involved in PPC, suggesting that educational efforts to improve basic knowledge of PPC within the medical community are needed. Conclusion(s): Overall, this study suggests that the ACCAPED scale is a useful tool to improve rationalization of resources and eligibility criteria for PPC.
Lazzarin P; Giacomelli L; Terrenato I; Benini F
Journal of palliative medicine
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/10.1089/jpm.2020.0148" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0148</a>
Actual Solidarity through Virtual Support: A Pilot Descriptive Study of an Online Support Group for Bereaved Parents
communication; pediatric palliative care; bereavement; telehealth
Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support. Objectives: To learn from bereaved parent participants' experiences with an online support group to include perceptions of technology acceptance and group communication dynamics. Design: Descriptive study reporting on an eight-week online bereavement support group offered during summer 2020. Subjects and Setting: Inclusive of six bereaved parent participants in the Midwestern United States. Measurements: Post-intervention survey consisting of 49-items with the Technology Acceptance Model and Other Communicated Perspective-Taking Ability instruments embedded. Results: Five bereaved mothers and one father (mean age 32 years) residing an average 126 miles from hospital participated in an online support group in a timeframe seven months to one year from the death of their child. Intensity of grief emotion (5/6 parents) and physical distance (4/6 parents) were notable barriers to in-person visits to the hospital, where bereavement support was to be offered. Parents uniformly reported feeling benefit from the program and satisfaction with the program. Respondents self-reported gaining improved communication (4/6 parents), coping (3/6 parents), peer support (3/6 parents), education (3/6 parents), and emotional expression (3/6 parents). Mean scores on the technology acceptance and communication experiences scales were 4.7/5. The virtual format was an acceptable modality with perceived supportive interpersonal communication dynamics. Conclusion: Pediatric palliative care teams may consider the offering of online bereavement support groups. Further research is warranted on the impact and outcomes of online bereavement support groups for bereaved parents.
Weaver MS; Jurgens A; Neumann ML; Schalley SM; Kellas JK; Navaneethan H; Tullis J
Journal of Palliative Medicine
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/10.1089/jpm.2020.0617" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0617</a>
Adult education program in palliative care for nursing facility physicians: design and pilot test
Palliative Care; Terminal Care; Adult; Education; Physicians; Pilot Projects; Hospitals; Research; Skilled Nursing Facilities; Extended Care Facilities
Nursing facilities (NF) are important sites for the care of dying patients. Curricula likely to improve end-of-life care are needed for NF physicians. To this end, a model medical school palliative care curriculum was modified for experienced NF physicians. Adult learning techniques were emphasized, as well as interactions likely to change physician behavior. Inclusion of the opinion leader, audit with feedback, use of consensus guidelines, and other techniques for changing physician behavior were included. Written materials to supplement the course were identified. This new program was pilot tested and improved. An initial audit of physician practices and survey of the NF staff, a half-day adult educational session, and follow-up with the NF medical director is suggested. This intervention should be tested to determine if it improves patient end-of-life care outcomes in this setting.
2000
Keay TJ; Alexander C; McNally K; Crusse B; Eger RE; Hawtin C; Lowitt NR; Ross DD
Journal Of Palliative Medicine
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/10.1089/jpm.2000.3.4.457" target="_blank" rel="noreferrer">10.1089/jpm.2000.3.4.457</a>
Advance Care Planning: Challenges and Approaches for Pediatricians
advance care planning
Abstract Background: There is increasing recognition of the value of advance care planning for children with life-limiting conditions. It is important that we acknowledge and reflect on the challenges that this work presents in order to optimize practice. Objective: Our aim was to review advance care planning for children with life-threatening or life-limiting conditions (LTLLCs) in our local area. Methods: We conducted a retrospective case note review. Study subjects were from two National Health Service (NHS) Trusts in Bristol in the United Kingdom. Cases were identified from Child Death Overview Panel data. Forty-two sets of case notes were reviewed in relation to 20 children. Measurements included quantitative and qualitative review of advance care planning in relation to standards set by The Association for Children's Palliative Care (ACT). Results: In 25% of cases there was no documented discussion with families about the approach to end of life (EOL). In 25% of cases there was no evidence of an advance care plan, and the content and accessibility of those that did exist was variable. Forty-five percent of families were not offered a choice with regard to location of care (LOC) in the last months of life and 50% were not offered a choice about location of death (LOD). Conclusions: We hope that acknowledgement of some of the challenges, alongside recognition of the clear benefits, of planning will help pediatricians to deliver this important area of care.
2014-06
Heckford EJ; Beringer AJ
Journal Of Palliative Medicine
2014
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Journal Article
<a href="http://doi.org/10.1089/jpm.2013.0374" target="_blank" rel="noreferrer">10.1089/jpm.2013.0374</a>
Advance directives and do-not-resuscitate orders in patients with cancer with metastatic spinal cord compression: advanced care planning implications.
Female; Humans; Male; United States; Young Adult; Physician-Patient Relations; Adult; Aged; Middle Aged; Communication; 80 and over; DNAR; Palliative Care/lj [Legislation & Jurisprudence]; Advance Directives/lj [Legislation & Jurisprudence]; Health Planning/lj [Legislation & Jurisprudence]; Neoplasms/pa [Pathology]; Resuscitation Orders/lj [Legislation & Jurisprudence]; Spinal Cord Compression/et [Etiology]; Spinal Cord Compression/pa [Pathology]; Spinal Neoplasms/co [Complications]; Spinal Neoplasms/sc [Secondary]; Palliative Care/ut [Utilization]
OBJECTIVES: Communication about end-of-life decisions is crucial. Although patients with metastatic spinal cord compression (MSCC) have a median survival time of 3 to 6 months, few data are available concerning the presence of advance directives and do-not-resuscitate (DNR) orders in this population. The objective of this study was to determine presence of advance directives and DNR order among patients with MSCC., METHODS: We retrospectively reviewed data concerning advance directives for 88 consecutive patients with cancer who had MSCC and required rehabilitation consultation at The University of Texas M. D. Anderson Cancer Center from September 20, 2005 to August 29, 2008. We characterized the data using univariate descriptive statistics and used the Fisher exact test to find correlations., RESULTS: The mean age of this patient population was 55 years (range, 24-81). Thirty patients (33%) were female. Twenty patients (23%) had a living will, 27 patients (31%) had health care proxies, and 10 patients (11%) had either out-of-hospital DNR order and/or dictated DNR note. The median survival time for these patients was 4.3 months., CONCLUSION: Despite strong evidence showing short survival times for MSCC patients, it seems many of these patients are not aware of the urgency to have an advance directive. This may be an indicator of delayed end-of-life palliative care and suboptimal doctor-patient communication. Using the catastrophic event of a diagnosis of MSCC to trigger communication and initiate palliative care may be beneficial to patients and their families.
2010
Guo Y; Palmer JL; Bianty J; Konzen B; Shin Ki; Bruera E
Journal Of Palliative Medicine
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/jpm.2009.0376" target="_blank" rel="noreferrer">10.1089/jpm.2009.0376</a>
Advanced illness index: Predictive modeling to stratify elders using self-report data
Female; Humans; Male; Terminally Ill; Aged; Severity of Illness Index; Risk Assessment; Self Disclosure; Forecasting; 80 and over; Models; retrospective studies; Health Surveys; Theoretical
OBJECTIVES: Develop a prediction model to identify persons who have an increased risk of dying within the next 36 months, in order to focus additional resources and assessment in areas related to advanced care planning. DESIGN: Retrospective study with a 3-year observation period. SETTING: Integrated, not-for-profit managed care organization. Participants: Beneficiaries aged 65-105 responding to an annual survey (n = 4888). MEASUREMENTS: Survey instrument includes physical function, geriatric syndromes, health care utilization, special equipment use, self-care deficits, caregiving responsibilities, and general health problems. RESULTS: An 11-variable model changed the baseline chi2 from 315.71 (df = 1) to 742.511 (df = 11). The percent of subjects correctly classified was 74.3% and the negative predictive value was 92.2%. CONCLUSION: Advanced Illness Index (AII) model is stable. Characteristic variables used are not easily reversed: the 1997 cohort classified as at-risk consistently remained at risk or died in the subsequent years (1998, 92%; and 1999, 96%) and 92% of those not at-risk survived the next 36 months. Persons at high risk should at a minimum be made aware of the types of integrated home and community-based services available to them should it be needed. They also should be targeted for elicitation of treatment preferences, values, designation of health care proxy, planning, and advanced care directives.
2006
Brody KK; Perrin NA; Dellapenna R
Journal Of Palliative Medicine
2006
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Journal Article
<a href="http://doi.org/10.1089/jpm.2006.9.1310" target="_blank" rel="noreferrer">10.1089/jpm.2006.9.1310</a>
Adverse events in hospice and palliative care: a pilot study to determine feasibility of collection and baseline rates
Female; Humans; Male; Young Adult; Adult; Aged; Middle Aged; Pilot Projects; Feasibility Studies; Australia; Urinary Retention; 80 and over; retrospective studies; Palliative Care/standards; Hospice Care/standards; Accidental Falls; Confusion; Hyperglycemia; Hypoglycemia; Hypotension
BACKGROUND: Continuous quality improvement is fundamental in all health care, including hospice and palliative care. Identifying and systematically reducing symptomatic adverse events is limited in hospice and palliative care because these events are mostly attributed to disease progression. OBJECTIVES: The aim of this study was to assess the feasibility of symptomatic adverse events in hospice and palliative care and assessing their incidence. METHODS: A retrospective, consecutive cohort of notes from a specialist palliative care inpatient service was surveyed by a clinical nurse consultant for symptomatic adverse events: falls, confusion, decreased consciousness, hypo- and hyperglycaemia, urinary retention, and hypotension. Demographic and clinical factors were explored for people at higher risk. RESULTS: Data were available on the most recent admissions of 65 people, generating >900 inpatient days. Fifty people (78%) had events precipitating admission, of whom 31 (62%) had at least one further event during admission. Eleven of 15 people who were admitted without an event experienced at least one during their admissions. Only 4 did not have an adverse event. During their stay, there were 0.13 (standard deviation [SD] = 0.19) events per patient per day. No drug-drug or drug-host events were noted. No clinical or demographic factors predicted groups at higher risk. CONCLUSIONS: This pilot highlights the feasibility of collecting, and ubiquity of, symptomatic adverse events, and forms a baseline against which future interventions to decrease the frequency or intensity can be measured. Given the frailty of hospice and palliative patients, any adverse event is likely to accelerate irreversibly their systemic decline.
Currow DC; Agar MR; To TH; Rowett D; Greene A; Abernethy AP
Journal Of Palliative Medicine
2011
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Journal Article
<a href="http://doi.org/10.1089/jpm.2010.0392" target="_blank" rel="noreferrer">10.1089/jpm.2010.0392</a>
An approach to understanding the interaction of hope and desire for explicit prognostic information among individuals with severe chronic obstructive pulmonary disease or advanced cancer
Disease
2008
Curtis JR; Engelberg RA; Young JP; Vig Elizabeth K; Reinke LF; Wenrich MD; McGrath BB; McCown E; Back AL
Journal Of Palliative Medicine
2008
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Journal Article
<a href="http://doi.org/10.1089/jpm.2007.0209" target="_blank" rel="noreferrer">10.1089/jpm.2007.0209</a>
An Automatic Pediatric Palliative Care Consultation for Children Supported on Extracorporeal Membrane Oxygenation: A Survey of Perceived Benefits and Barriers
Consultation; Extracorporeal membrane oxygenation; Pediatric palliative care; Survey
Background: Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Objective(s): Investigate intensive care unit (ICU) team members' perceptions of automatic PPC consultation for children on ECMO in an ICU in the United States. Method(s): Cross-sectional survey assessing benefits, barriers to PPC, and consultation processes. Result(s): Of 291 eligible respondents, 48% (n=140) completed the survey and 16% (n=47) answered an open-ended question. Benefits included support in decision-making (n=98; 70%) and identification of goals of care (n=89; 64%). Barriers included perception of giving up on families (n=59; 42%) and poor acceptability by other team members (n=58; 41%). Respondents endorsed communication with the primary ICU team before (n=122; 87%) and after (n=129; 92%) consultation. Open-ended responses showed more positive (79% vs. 13%) than negative statements. Positive statements reflected on expanding PPC to other critically-ill children where negative statements revealed unrecognized value in PPC. Conclusion(s): Results demonstrate opportunities for education about the scope of PPC and improvements in PPC delivery.
Delgado-Corcoran C; Wawrzynski SE; Mansfield KJ; Flaherty B; DeCourcey DD; Moore D; Cook LJ; Ullrich CK; Olson LM
Journal of Palliative Medicine
2022
<a href="http://doi.org/10.1089/jpm.2021.0452" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0452</a>
An Order Protocol For Respiratory Distress/acute Pain Crisis In Pediatric Palliative Care Patients: Medical And Nursing Staff Perceptions
Acute Pain/therapy; Adolescent; Adult; Advance Directives; Aged; Attitude Of Health Personnel; Canada; Child; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Medical Staff Hospital/psychology; Middle Aged; Nursing Staff Hospital/psychology; Palliative Care/standards; Pediatric Nursing/standards; Practice Guidelines As Topic; Respiratory Distress Syndrome Adult/therapy; Surveys And Questionnaires; Young Adult
BACKGROUND:
An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family, the OPD is prescribed by the attending physician whenever judged appropriate. The OPD can then be initiated by the bedside nurse when necessary; the physician is notified after the first dose is administered.
OBJECTIVES:
The study objectives were to evaluate the perceptions and experience of the medical/nursing staff towards the use of the OPD.
METHODS:
A survey was distributed to all physicians/nurses working on wards with pediatric palliative care patients. Answers to the survey were anonymous, done on a voluntary basis, and after consent of the participant.
RESULTS:
Surveys (258/548) were answered corresponding to a response rate of 47%. According to the respondents, the most important motivations in using the OPD were the desire to relieve patient's distress and the speed of relief of distress by the OPD; the most important obstacles were going against the patient's/his or her family's wishes and fear of hastening death. The respondents reported that the OPD was frequently (56%) or always (36%) effective in relieving the patient's distress. The respondents felt sometimes (16%), frequently (34%), or always (41%) comfortable in giving the OPD. They thought the OPD could never (12%), rarely (32%), sometimes (46%), frequently (8%), or always (1%) hasten death. Physicians were less favorable than nurses with the autonomy of bedside nurses to initiate the OPD before notifying the physician (p = 0.04). Overall, 95% of respondents considered that they would use the OPD in the future.
CONCLUSIONS:
Data from this survey shows that respondents are in favor of using the OPD at SJH and find it effective. Further training as well as support for health care professionals are mandatory in such palliative care settings.
Bidet G; Daoust L; Duval M; Ducruet T; Toledano B; Humbert N
Journal Of Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1089/jpm.2015.0100
And the Beat Goes On: Heartbeat Recordings through Music Therapy for Parents of Children with Progressive Neurodegenerative Illnesses
palliative care; parental bereavement; music therapy; heartbeat recordings; preloss care; progressive neurodegenerative illnesses
Background: Music is a powerful therapeutic intervention to promote physical and psychological health, healing, and well-being. In pediatric palliative care, music therapists are often involved in preloss care. Heartbeat recordings (HBRs) synchronize the rhythm of the heartbeat into a favorite song. In preloss care, HBRs show promise in helping parents of children with progressive neurodegenerative illnesses (PNDI) cope with their chronic sorrow and the loss of their child. Objective: To explore the lived experience of HBRs for bereavement in the lives of parents of children with PNDI. Design: Phenomenological study. Setting/Subjects: Purposeful sample of 11 English-speaking parents of children with PNDI receiving palliative care services in an academic pediatric hospital were interviewed three months after receiving their child's HBR. Measurements: A semistructured interview guide was used to collect data concurrently with the mind mapping process. Results: Data from interviews revealed 4 major themes and 10 subthemes: (1) Bifocal View (parental lens vs. medical lens); (2) Navigating Life and Relationships (caregiver fatigue, grief and loss, marriage, job, brought us together, paying it forward); (3) Coping through Spirituality; and, (4) Legacy Creation (HBR as a connection, song selection). Conclusions: Parents of children with PNDI experience chronic sorrow. The HBR assisted in meaning-making that validated the child's life and supported the parents' expression of grief and their ability to cope. Further research is needed to validate the impact of HBRs in diverse populations.
Walden M; Elliott EC; Ghrayeb A; Lovenstein A; Ramick A; Adams G; Fairchild B; Schreck B
Journal of Palliative Medicine
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/10.1089/jpm.2020.0447" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0447</a>
Are we training our fellows adequately in delivering bad news to patients? A survey of hematology/oncology program directors
Humans; United States; Physician-Patient Relations; Data Collection; Attitude of Health Personnel; Education; Communication; Truth Disclosure; Fellowships and Scholarships; Medical; Medical Oncology/education; Graduate/economics/standards; Hematology/education
BACKGROUND: Medical oncologists often must deliver bad news. The authors were interested in the extent of formal training in delivering bad news in hematology/oncology fellowships in the United States. METHODS: An e-mail survey was sent to all hematology/oncology fellowship program directors in the United States. Surveys were e-mailed to 124 program directors and responses were received either via e-mail or regular mail. Program directors were asked the adequacy, the perceived necessity, the quality of this training, and the institutional support provided. It was also intended to elicit responses about the degree of formal training fellows receive in delivering bad news. chi(2) Statistics were used to perform comparisons between items; p values of less than 0.05 were considered statistically significant. RESULTS: Sixty-five surveys were completed and returned (52% response rate). The majority of programs, 82%, are in urban areas and 97% of the primary teaching hospitals are considered tertiary care centers and 46% of programs carry a National Cancer Institute (NCI) designation. Median number of fellows in a training program is 6 with the range being 3 to 46. Eighty-nine percent of program directors reported that they themselves received little to no formal training in delivering bad news, but they report 37% of current fellows receive little to no formal training with 40% receiving some training and additional 23% receiving moderate to extensive training (p
2009
Hebert HD; Butera JN; Castillo J; Mega AE
Journal Of Palliative Medicine
2009
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Journal Article
<a href="http://doi.org/10.1089/jpm.2009.0074" target="_blank" rel="noreferrer">10.1089/jpm.2009.0074</a>
Assessing Need for Palliative Care Services for Children in Mexico
Background: Pediatric palliative care increasingly became integrated into health care institutions worldwide over the last decade. However, in Mexico and other developing countries with large populations of children, little is known regarding the need for palliative care services. We aimed to assess the need for palliative and end-of-life care for children dying in public hospitals affiliated with Secretaria de Salud in Mexico. Measurement: We conducted a retrospective review of deaths of children (1–17 years old) occurring during 2011 and determined deaths associated with underlying complex chronic conditions by reviewing the four causes of death listed in the death certificate. We collected sociodemographic and clinical data and utilized univariate and multivariate analyses to determine factors associated with complex chronic conditions. Results: A total of 2715 pediatric deaths were studied. We found 41% were associated with a complex chronic condition. The most frequent types of conditions were malignancies (47%), neuromuscular (18%), cardiovascular (12%), and renal (10%). Children with renal and malignant conditions died at an older age than children with other types of complex chronic conditions. Multivariate analysis indicated the independent predictors of death with complex chronic condition were no indigenous ethnicity, lack of admission to the intensive care unit during the final hospital stay, and having affiliation with an institution for health care. Conclusions: A large proportion of pediatric deaths are associated with complex chronic conditions indicating the provision of adequate funding for professional education and palliative care initiatives for children in Mexico, should be a topic of the national health care agenda.
2014-10
Cardenas-Turanzas M; Tovalin-Ahumada H; Romo CG; Okhuysen-Cawley R
Journal Of Palliative Medicine
2014
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Journal Article
<a href="http://doi.org/10.1089/jpm.2014.0129" target="_blank" rel="noreferrer">10.1089/jpm.2014.0129</a>
Assessing The Presence And Severity Of Constipation With Plain Radiographs In Constipated Palliative Care Patients.
Palliative And Supportive Care; Constipation; Australia; Gastroenterology
BACKGROUND:
Palliative care guidelines recommend plain radiographs to assess constipation based on the presumption that visible fecal shadowing represents stool retention. Despite this, using plain radiographs in this way is not well validated.
OBJECTIVES:
This work's main aim was to compare clinicians' reports of fecal loading on radiographs. This study also compares clinicians' assessments with radio-opaque marker transit studies and patients' self-reported constipation symptoms.
METHODS:
This study was conducted in a sample of 30 constipated palliative care patients taking laxatives who had all undergone colon transit studies and contemporaneous assessment of constipation symptoms with the Patient Assessment of Constipation Symptom (PAC-SYM) questionnaire. Four separate clinicians independently reported their opinions of fecal loading using a previously developed fecal loading scale. Participant details were summarized and pair-wise inter-rater agreement among all four raters were examined using the Bland-Altman approach. For the comparisons of the clinician-assigned fecal loading score between the radiographic assessment of the normal and slow colon transit time, the nonparametric approach of Mann-Whitney U tests were applied. Spearman's correlation analyses were employed to investigate the association between the clinician-assigned fecal loading score and the patient self-reported PAC-SYM score.
RESULTS:
The results of this study are very similar to other studies conducted in functional constipation, highlighting systematic disagreement between observers. Further poor correlations were noted between fecal loading scores and colon transit times and with patient self-reported symptoms.
CONCLUSION:
These results, when considered with other work in chronic constipation, question the ongoing use of radiographs in the diagnosis of constipation.
Clark K; Lam LT; Talley NJ; Quinn J; Blight A; Byfieldt N; Currow DC
Journal Of Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Assessment Of The Spiritual Needs Of Primary Caregivers Of Children With Life-limiting Illnesses Is Valuable Yet Inconsistently Performed In The Hospital.
Quality Of Life; Pediatric Palliative Care; Religion; Cancer-patients; Health Care Sciences & Services Associations
BACKGROUND:
Religion and spirituality influence how many patients and families experience illness, but knowledge of the level of spiritual care provided to caregivers of pediatric patients within the hospital is limited.
OBJECTIVE:
We evaluated patient caregivers' perceptions of the extent to which their religious and spiritual (R/S) needs were assessed and addressed in the hospital.
METHODS:
We surveyed primary caregivers of children referred to palliative care <1 year prior at an urban, pediatric academic medical center. Participants completed a structured questionnaire with quantitative and qualitative measures of the provision of spiritual care in the hospital. Nonparametric tests were used to compare various measures of perceived and desired R/S support.
RESULTS:
The majority (16/24) of caregivers desired inquiry about R/S needs by the medical team. Fewer than half (12/25) had these needs assessed. No subjects were uncomfortable with questions regarding R/S needs. Only 35% (8/23) specifically wanted a physician to inquire about R/S needs. Subjects whose R/S needs were assessed perceived higher levels of support from the medical team (4.40 versus 3.08, p = 0.02). A significant correlation existed between number of hospital-based R/S resources used and reported R/S-related comfort (rs = 0.438, p = 0.043).
CONCLUSIONS:
Assessment of R/S needs of caregivers of pediatric palliative care patients is performed less often than desired, even though it can improve perceptions of support from medical teams. Use of hospital-based R/S resources can increase spiritual comfort. Standardizing assessment of caregivers' R/S needs and referral to appropriate resources is a target for quality improvement in pediatric palliative medicine.
Kelly JA; May CS; Maurer SH
Journal Of Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Attempting to Define Clinical Productivity Metrics among Pediatric Palliative Care Services at Academic Children's Hospitals
United States; article; child; female; human; male; palliative therapy; pediatric palliative care; clinical article; human tissue; program development; billing and coding; burnout; clinical productivity; convenience sample; leadership; productivity; sustainability; workload
Introduction: Pediatric palliative care (PPC) programs have grown in size and number at academic children's hospitals in the United States for the past 20 years. Little is known about the relationships between program workforce staffing, billing and coding practices, clinical service requirements for billing providers, and sustainability of program models for billing providers. Method(s): The authors contacted a convenience sample of 10 PPC program leaders at academic children's hospitals in the United States. Program leaders were asked to provide information about billing provider full-time equivalent (FTE) staffing, billing and coding practices, and productivity metrics for a three-month period, from January 1 to March 31, 2017. Result(s): Ten programs participated in the convenience sample survey, and seven provided information about billing and coding practices. For the seven programs that provided evaluation and management data, calculated estimate of mean work Relative Value Unit (wRVU) production per 1.0 FTE per year was 1626. Calculated estimate of consultations per 1.0 FTE per month was 15. Calculated estimate of total clinical encounters per 1.0 FTE per month was 70. Conclusion(s): The relationships between PPC billing provider productivity and clinical workload are complex and vary widely among a convenience sample of academic PPC programs. Given the high burnout rates in the field, efforts should be made to more clearly define these relationships to promote sustainability of both billing and nonbilling PPC providers.
Mahoney D P; Brook I; Fossa M; Kang T
Journal of Palliative Medicine
2019
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<a href="http://doi.org/10.1089/jpm.2019.0164" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0164</a>
Barriers to Pediatric Palliative Care: Trainee and Faculty Perspectives Across Two Academic Centers
child; Palliative Care; United States; article; controlled study; female; human; major clinical study; male; perception; palliative therapy; prognosis; resident; education; physician; life sustaining treatment; communication barrier; multicenter study; thematic analysis; pediatric hospital; personnel shortage
Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers to palliative care across two pediatric centers to (1) examine differences between trainees and faculty and (2) compare these data with previous studies. <br/>Method(s): A mixed-methods study was conducted in fall 2021 among pediatric trainees and faculty physicians at three pediatric hospitals in two pediatric centers in the western United States. Surveys were distributed through hospital listservs and analyzed descriptively and through inductive thematic analysis. <br/>Result(s): There were a total of 268 participants: 50 trainees and 218 faculty physicians. Of the trainees, 46% (23) were fellows and 54% (27) were pediatric residents. Trainees and faculty reported the same four most common barriers, which were consistent with previous studies: family not ready to acknowledge an incurable condition (64% trainees and 45% faculty); family preference for more life-sustaining therapies than staff (52% and 39%); uncertain prognosis (48% and 38%); and parent discomfort with possibility of hastening death (44% and 30%). Other barriers commonly reported included time constraints, staff shortages, and conflict among family about treatment goals. Language barriers and cultural differences were also cited. <br/>Conclusion(s): This study examining palliative care across two pediatric centers suggests that providers' perceptions of family preferences and understanding of illness persist as barriers to the delivery of pediatric palliative care services. Future research should examine family-centered and culturally mindful interventions to better elucidate family perspectives on their child's illness to align care.
Levine A; Winn PA; Fogel AH; Lelkes E; McPoland P; Agrawal AK; Bogetz JF
Journal of Palliative Medicine
2023
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.2022.0580" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0580</a>
Behind the Scenes: Care Coordination Time in an Outpatient Pediatric Palliative Oncology Clinic
Oncology
Background: Integrated pediatric palliative oncology (PPO) outpatient models are emerging to assist oncologists, children, and families throughout their course with cancer. Significant time is devoted to care coordination ("nonbillable"time), but the scope, time per patient, and ratio of nonbillable to billable (NB:B) minutes are unknown. This information is crucial to designing new PPO outpatient clinics and advocating for appropriate personnel, physician time, and resources. Our objectives were to quantify nonbillable time and evaluate demographic or disease-based associations. Method(s): A single-institution one-day PPO clinic was started in July 2017. All encounters were tracked for 11 months. Administrative and PPO inpatient time were excluded. Billable and nonbillable minutes were recorded daily. Ratios of NB:B minutes by patient demographics and clinical factors were calculated using descriptive statistics and multivariate modeling. Result(s): Ninety-five patients were included [solid tumors (42, 44%), brain tumors (33, 35%), and leukemia/lymphoma (20, 21%)]. PPO completed billable visits on 52 of 95 (55%) patients and assisted without billing in the care of 43 patients (45%). Twenty-four (25%) patients were deceased. Overall NB:B ratio was 1.04 and differed among diagnoses (leukemia/lymphoma 2.5, solid tumor 0.9, and brain tumor 0.8). Deceased patients had a higher ratio of NB:B minutes than alive patients (1.9 vs. 0.8, p = 0.012). Billable and nonbillable minutes both increased over time. Conclusion(s): Care coordination in a PPO clinic is time intensive and grows with clinic volume. When devising a PPO outpatient program, this NB:B ratio should be accounted for in clinician time and personnel devoted to patient and family assistance. © Copyright 2021, Mary Ann Liebert, Inc., publishers 2021.
Brock KE; Degroote NP; Allen KE
Journal of Palliative Medicine
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/10.1089/jpm.2020.0197" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0197</a>
Bereaved Parent Perspectives on the Benefits and Burdens of Technology Assistance among Children with Complex Chronic Conditions
children; complex chronic conditions; pediatrics; technology
Background: Many children with complex chronic conditions (CCCs) are supported by medical technologies. Objective: The aim of this study was to understand bereaved parent perspectives on technology assistance among this unique population. Design: Mixed methods design was used to analyze data from the cross-sectional Survey of Caring for Children with CCCs. Setting/Subjects: Bereaved parents of children with CCCs who received care at a large academic institution in the United States and died between 2006 and 2015. Measurements: Survey items were analyzed descriptively and integrated with thematic analysis of open-response items to identify key themes pertaining to parents' perspectives on technology. Results: 110/211 (52%) parents completed the survey and at least 1 open-response item. More than 60% of parents had children with congenital/chromosomal or central nervous system progressive CCCs, used technology at baseline, and died in the hospital. A subset of parents recalled making decisions either not to initiate (n = 26/101, 26%) or to discontinue (n = 46/104, 44%) technology at end of life. Parents described both the benefits and burdens of technology. Two themes emerged regarding technology's association with the (1) intersection with goals of care and (2) complications and regret. Within goals of care, two subthemes arose: (a) technology was necessary to give time for life extension and/or to say goodbye, and (b) technology greatly impacted the child's quality of life and symptoms. Conclusions: Parents have nuanced perspectives about the benefits and burdens of technology. It is essential to understand parent's most important goals when supporting decisions about technology assistance for children with CCCs.
Bogetz JF; Revette A; DeCourcey DD
Journal of Palliative Medicine
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/10.1089/jpm.2021.0221" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0221</a>
Beyond mortality: Assessing pediatric palliative needs
human; child; female; male; diagnosis; controlled study; palliative therapy; pain; major clinical study; conference abstract; patient referral; neonatal intensive care unit; needs assessment; hematology; oncology; pediatric intensive care unit; resident; general practitioner; hospital patient; questionnaire; morbidity; mortality; bone marrow transplantation; heme; nausea; surgery; tertiary health care
Description: Background: Pediatric palliative care is an interdisciplinary service that works to enhance the quality of life for children with serious illness. Unfortunately, the need for palliative care is difficult to ascertain and is often inaccurately based on mortality data, specifically the incidence of complex chronic conditions (CCC) at the time of death. These rates based on mortality vary among pediatric patients from 27-60% nationally, with 21% of US pediatric deaths being directly attributable to a CCC. Aim: This study seeks to understand the palliative care needs of an inpatient pediatric population, which we hypothesize will be substantial. Design: A cross-sectional survey was performed using a palliative care referral questionnaire, identifying the following characteristics among pediatric inpatients: 1) serious, life-limiting diagnosis, 2) frequent admissions and escalating care requirements, 3) persistent, poor symptom control, 4) need to clarify the goals of care, or 5) none of the above apply. Setting/Participants: Senior pediatric residents completed the palliative care needs assessment for pediatric patients upon admission to Yale New Haven Children's Hospital in the Fall of 2015. Patients admitted to the pediatric intensive care unit (PICU), hematology, oncology, and bone marrow transplant unit (Heme/Onc/BMT), and to the general medical units under a hospitalist, primary care physician, or subspecialty physician were included. Neonatal intensive care unit and exclusively surgical (non-PICU) patients were excluded. Results: 273 questionnaires were completed over 3 weeks. Nearly 45% of patients (n =122) met at least one palliative care referral criterion. Most patients were identified as having a serious illness (74%), with 70% meeting additional palliative care referral criteria (63/90). In fact, 21% of patients with a serious, life-limiting diagnosis met all four criteria (n = 19). On note, poor symptom control was reported in 55% of patients with positive surveys, comprising 25% of all patients surveyed (67/273), some of whom did not have a serious, life-limiting diagnosis. Data was further evaluated based on location of admission, with 75% of PICU patients (44/59), 56% of Heme/Onc/BMT admissions (25/45), and 31% of general/subspecialty patients meeting at least one palliative care referral criterion. Conclusions: This study identifies a considerable need for palliative care among pediatric inpatients at a tertiary care children's hospital. The results are consistent with national trends among dying patients, but the current study acts to supplement the existing literature by characterizing the need for palliative medicine based on morbidity among living patients. This approach allowed for recognition of the 25% of pediatric inpatients suffering from poor symptom control, such as pain or nausea, who could benefit from pediatric palliative care consultation. Furthermore, these data help to clarify where palliative care services are most urgently needed within the hospital, and can guide the distribution of resources.
Murtha TD; Gielissen K; Marquez A; Prozora S; Massaro S
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>
Breaking Down Silos: Consensus-Based Recommendations for Improved Content, Structure, and Accessibility of Advance Directives in Emergency and Out-of-Hospital Settings
community paramedicine; emergency medical services; health system design; mobile integrated health
Background: Patients receiving palliative care often interact with a variety of health care providers across various settings. While patients may experience good care from these services, the connection between these can be disjointed as care providers may work siloed from each other. This is particularly true in out-of-hospital and hospital emergency settings, where providers have no prior knowledge of the patient, particularly their advanced directives (ADs) and goals of care. In the Emergency Department or when paramedics respond to the home, ADs are further challenged by issues of clarity of content, contextual relevance, and accessibility. Objectives: (1) What content should be in AD for medical emergencies, and (2) what would ensure the AD is accessible in times of crisis? Design: Phase 1 involved a review of existing AD and published literature to generate a list of candidate elements. Phase 2 presented these in an online survey using modified Delphi method to paramedics, emergency nurses, and physicians. During phase 3, a focus group with palliative and emergency care providers and information technology experts was held regarding current accessibility of AD and a vision for improvement. The detailed focus group notes were coded using inductive analysis. Results: Fifty-five candidate elements were provided for the Delphi. After three rounds, 36 panelists achieved consensus on 46 elements. Participation was greater than 80% in all rounds. From the focus group on access, six themes emerged; (1) imprecise language, (2) mismatch of protocols, (3) lack of understanding by patients/families, (4) lack of AD, (5) difficulty accessing AD, and (6) opportunities: database, education. Conclusion: This project makes recommendations to improve palliative care in emergency or crisis situations and facilitate care consistent with patient's goals: (1) a consensus-based template for AD content; and (2) development of a centralized database. These findings served as the foundation for the "Paramedics Providing Palliative Care at Home" program.
Carter A J E; Earle R; Gregoire M C; MacConnell G; MacDonald T; Frager G
Journal of Palliative Medicine
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/10.1089/jpm.2019.0087" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0087</a>
Bringing Home To The Hospital: Development Of The Reflection Room And Provider Perspectives
Intensive Care Unit; Posthumous Care; Terminal Care; Child; Family; Hospital Patient; Human; Major Clinical Study; Model; Privacy; Quantitative Study; Staff; United States
Background: Alternative locations for children near end of life (EOL) are lacking in the United States with deaths largely occurring within intensive care units (ICUs). The reflection room (RR) was implemented as a relevant space for providing this care in our hospital. Objective: We hypothesized staff would report a positive experience in providing EOL and/or postmortem (PM) care here and would recommend this to peers. Design: This explorative study summarized room use data and evaluated staff experiences using a voluntary qualitative and quantitative survey. Subjects: The survey was administered to the inpatient interdisciplinary team. Results: From 2011 to 2014, 116 children used the RR, 64% for PM care, and 34% for EOL care. A total of 201 staff responded to the survey. Of them, 90% described the space as a valuable resource to families, 90% reported a preference for using this location versus a hospital unit, and 93% stated they would encourage their peers to do the same. Advantages listed were increased privacy, allowance for more visitors, and a quieter, calmer environment. Challenges included distance from the unit of transfer, managing assignments in two hospital locations, and medication transportation. Overall, there was a measureable decrease in the number of deaths pronounced in the ICU as the number pronounced in the RR increased, illustrating a significant change in practice. Conclusion: This study demonstrated an overwhelmingly positive experience in providing EOL and/or PM care to children in the RR and staff would recommend this to peers. This model of care should be a serious consideration for hospitals in the United States. © Copyright 2017, Mary Ann Liebert, Inc.
Vesely C; Newman V; Winters Y; Flori H
Journal Of Palliative Medicine
2017
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10.1089/jpm.2016.0070
Building competence in pediatric end-of-life care
BACKGROUND: Pediatric end-of-life care involves multiple decision-makers including the patient, the family, and the health care provider. Although some information exists on the role of patient and family values on decision making, little is known about what influences the health care provider's decisions and performance. OBJECTIVE: A survey was conducted to collect data on health care providers who provide pediatric end-of-life care to determine what factors influence provider confidence in managing eleven different end-of-life care issues. DESIGN: An electronic 34-question survey was circulated in 2005 at a single children's hospital in Western Michigan. RESULTS: One hundred fifty-seven responses were received. Age had the highest association with confidence. Older responders reported more confidence than their younger colleagues (odds ratio [OR] 3.3-26.1 on eight issues). Other provider factors associated with higher confidence levels included male gender (OR 3.6-11.2 on five issues), experience (OR 2.7-4.6 on five issues) and not being religious (OR 3.1-3.4 on three issues). Responders who received formal education during training felt better prepared than those who did not (17.1% versus 3.8% felt at least well prepared, respectively). CONCLUSIONS: Age and experience create confidence in managing pediatric end-of-life care issues. Other provider variables including gender and religious beliefs may also influence confidence on some issues. Although formal education helps providers feel better prepared to care for children with terminal conditions, the majority of providers still feel no more than adequately prepared by their training. More emphasis on experience-driven education delivered by seasoned educators may improve confidence in delivering pediatric end-of-life care.
2009
Dickens DS
Journal Of Palliative Medicine
2009
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/10.1089/jpm.2009.0032" target="_blank" rel="noreferrer">10.1089/jpm.2009.0032</a>