Multi-disciplinary Pediatric End-of-life Training Improves Staff Preparedness And Lessens Staff Distress
Background: Children's hospital professionals generally receive standardized training in Pediatric Advanced Life Support (PALS) but they are not regularly trained in the provision of end-of-life care in situations where death is anticipated. To address this training gap, we developed a series of training modules and workshops for the provision of end-of-life (EOL) care and have trained over 500 professionals since 2010. Objectives: To assess whether receiving advanced EOL care training can help caregivers provide more effective care for a dying patient and reduce their own stress and anxiety as they deliver that care. Methods: Likert scale surveys were sent to professionals within forty-eight hours of their having been involved in care of a dying child. The survey assessed the degree of agreement that participation in advanced EOL training or PALS training (1) helped them to participate more effectively in the care of dying child and (2) reduced anxiety or stress in the delivery of end-of-life care. Results: Six hundred ninety three caregivers (mostly doctors and nurses) have responded to 134 post-death surveys. Of 321 respondents who had had PALS training, fifty-four percent agreed or strongly agreed that PALS training helped them participate more effectively in the patient's care; fifty-one percent agreed or strongly agreed that PALS training reduced their anxiety or stress. For those 186 respondents who had had specific palliative-care-team-led EOL training, eighty-nine percent agreed or strongly agreed that EOL training not only helped them participate more effectively, but also reduced their anxiety or stress. Differences in PALS vs. EOL training were significant at p LT 0.01 for both questions. Impact on Practice: Training in advanced end-of-life care may be a useful adjunct in preparing pediatric professionals caring for children in their last hours of life.
Pituch K; Halsey M; Keefer P; Azim J
Journal Of Pain And Symptom Management
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).
<a href="http://dx.doi.org/10.1016/j.jpainsymman.2016.10.111" target="_blank" rel="noreferrer"><span>http://dx.doi.org/10.1016/j.jpainsymman.2016.10.111</span></a>
Factors Associated With Use Of U.S. Community-based Palliative Care For Children With Life-limiting Or Life-threatening Illnesses And Their Families: An Integrative Review
Children And Families; Community; Home; Integrative Review; Life-limiting/life Threatening Illness; Palliative Care
CONTEXT: As children with life-limiting and life-threatening illnesses live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based pediatric palliative care (CBPPC) is needed to strategically plan for a seamless continuum of care for children and their families. OBJECTIVE: The purpose of this integrative review paper is to explore factors that are associated with the use of CBPPC for U.S. children with life-limiting and life-threatening illnesses and their families. METHODS: A literature search of PubMed, CINAHL, Scopus, Google Scholar, as well as an ancestry search, to identify empirical studies and program evaluations published between 2000 and 2016. The methodological protocol included an evaluation of empirical quality and explicit data collection of synthesis procedures. RESULTS: Forty peer-reviewed quantitative and qualitative methodological interdisciplinary papers were included in the final sample. Patient characteristics such as older age and a solid tumor cancer diagnosis, and interpersonal factors such as family support were associated with higher CBPPC use. Organizational features were the most frequently discussed factors that increased CBPPC, including the importance of inter-professional hospice services and inter-organizational care coordination for supporting the child and family at home. Lastly, geography, concurrent care and hospice eligibility regulations, and funding and reimbursement mechanisms were associated with CBPPC use on a community and systemic level. CONCLUSION: Multilevel factors are associated with increased CBPPC use for children with life-limiting or life-threatening illnesses and their families in the U.S.
Boyden J Y; Curley M A Q; Deatrick JA; Ersek M
Journal Of Pain & Symptom Management
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1016/j.jpainsymman.2017.04.017
Productivity In Pediatric Palliative Care: Measuring And Monitoring An Elusive Metric
CONTEXT: Workforce productivity is poorly defined in healthcare. Particularly in the field of pediatric palliative care (PPC), the absence of consensus metrics impedes aggregation and analysis of data to track workforce efficiency and effectiveness. Lack of uniformly measured data also compromises the development of innovative strategies to improve productivity and hinders investigation of the link between productivity and quality of care, which are interrelated but not interchangeable. OBJECTIVES: To review the literature regarding the definition and measurement of productivity in PPC; to identify barriers to productivity within traditional PPC models; and to recommend novel metrics to study productivity as a component of quality care in PPC. METHODS: PubMed(R) and CDSRa searches for scholarly literature were performed using key words1 for articles published between 2000-2016. Organizational searches of CAPC,b NHPCO,c NAHCH,d AAHPM,e HPNA,f NQF,g and NCPQPCh were also performed. Additional semi-structured interviews were conducted with directors from seven prominent PPC programs across the United States to review SOPsj for PPC team workflow and productivity. RESULTS: Little consensus exists in the PPC field regarding optimal ways to define, measure, and analyze provider and program productivity. Barriers to accurate monitoring of productivity include difficulties with identification, measurement, and interpretation of metrics applicable to an interdisciplinary care paradigm. In the context of inefficiencies inherent to traditional consultation models, novel productivity metrics are proposed. CONCLUSIONS: Further research is needed to determine optimal metrics for monitoring productivity within PPC teams. Innovative approaches should be studied with the goal of improving efficiency of care without compromising value.
Kaye EC; Abramson ZR; Snaman J; Friebert S; Baker J
Journal Of Pain And Symptom Management
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).
The End Of Life Experience Of Pediatric Heart Transplant Recipients
CONTEXT: Despite advances in therapies, many pediatric heart transplant (Htx) recipients will die prematurely. We characterized the circumstances surrounding death in this cohort, including location of death and interventions performed in the final 24 hours. METHODS: We reviewed all patients who underwent Htx at Lucile Packard Children's Hospital, Stanford, survived hospital discharge, and subsequently died between 7/19/2007-9/13/2015. The primary outcome studied was location of death, characterized as inpatient, outpatient, or emergency department (ED). Circumstances of death (withdrawal of life-sustaining treatment, death during resuscitation, or death without resuscitation with/without DNR) and interventions performed in the last 24 hours of life were also analyzed. RESULTS: 23 patients met entry criteria. The median age at death was 12 (range: 2-20) years, and the median time between transplant and death was 2.8 (range: 0.8-11) years. Four (17%) died at home, 3 (13%) in the ED. Sixteen (70%) patients died in the hospital, 14/16 (88%) of whom died in an intensive care unit (ICU). 5/23 (22%) experienced attempted resuscitation. Interventions performed in the last 24 hours of life included intubation (74%), mechanical support (30%), and dialysis (22%). Most patients had a recent outpatient clinical encounter with normal graft function within 60 days of dying. CONCLUSIONS/LESSONS LEARNED: Death in children following Htx often occurs in the inpatient setting, particularly the ICU. Medical interventions, including attempted resuscitation, are common at the end of life. Given the difficulty in anticipating life-threatening events, earlier discussions with patients regarding end-of-life wishes are appropriate, even in those with normal graft function.
Hollander SA; Dykes J; Chen S; Barkoff L; Sourkes B; Cohen H; Rosenthal DN; Bernstein D; Kaufman BD
Journal Of Pain And Symptom Management
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).
Healing Touch: Positively Sharing Energy In A Pediatric Hospital
As a fellowship trained palliative care physician impressed by the complementarity of Palliative and Integrative Medicine, I am reporting on recent experiences with healing touch in our pediatric hospital (Children's Hospital and Medical Center in Omaha, Nebraska) in both its directly observed and metaphorical applications.
Weaver M
Journal Of Pain And Symptom Management
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).
"Let's bring her home first." Patient Characteristics and Place of Death in Specialized Pediatric Palliative Home Care
Act Categories; Diagnosis; Home Care; Nervous System; Place Of Death; Specialized Pediatric Palliative Care
CONTEXT: Specialized pediatric palliative home care (SPPHC) is the main pediatric palliative care structure in Germany. Detailed data on patient characteristics and care are sparse. Describing this population in terms of diagnoses and care needs is essential for further development of palliative care services for these patients. OBJECTIVES: We asked whether the population at our center 1) was representative compared with national mortality statistics; 2) showed differences in the clinical course among the four diagnostic categories established by the Association for Children with Terminal Conditions/Royal College of Paediatrics and Child Health; and 3) was different to published populations in pediatric palliative care regarding diagnoses, care, and place of death. METHODS: Retrospective single center chart analysis of 212 consecutive patients on SPPHC (2009-2015). RESULTS: Main International Statistical Classification of Diseases and Related Health Problems, 10th Revision groups were nervous system, congenital abnormalities, neoplasia, and metabolic disease, reflecting the mortality statistics for patients one to 20 years. Thirty-six percent of patients were assigned to ACT-3, 34% to ACT-4, 26% to ACT-1, and 4% to ACT-2. ACT-1 patients mostly needed high-intensity care for short durations, ACT-4 patients showed long survival times with mostly intermittent care. Seventy-five percent of patients showed nervous system involvement. Eighty-four percent died at home, 12% in hospital, and 4% in a hospice, with 96% dying at their preferred place. CONCLUSION: Our data on SPPHC show 1) significant differences between Association for Children with Terminal Conditions/Royal College of Paediatrics and Child Health groups in terms of care needs and survival; 2) a high prevalence of children with neurological problems; and 3) a large majority of children dying at home. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Bender HU; Riester MB; Borasio GD; Fuhrer M
Journal Of Pain And Symptom Management
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="https://doi.org/10.1016/j.jpainsymman.2017.04.006" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2017.04.006</a>
Patterns and Outcomes of Care in Children with Advanced Heart Disease Receiving Palliative Care Consultation
Advanced Heart Disease; Goals Of Care; Pediatric End-of-life Care; Pediatric Palliative Care
CONTEXT: While access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD). OBJECTIVES: To examine features of subspecialty PPC involvement for children with AHD. METHODS: Retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016. RESULTS: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/non-structural heart disease. Median age at initial PPC consultation was 7.7 months (range 1 day-28.8 years). Of the 92 patients who were alive at data collection, 73% had received initial consultation over one year prior. Most common indications for consultation were goals of care (80%) and psychosocial support (54%). At initial consultation, most families (67%) expressed that their primary goal was for their child to live as long and as comfortably as possible. Among deceased patients (n=109), median time from initial consultation to death was 33 days (range 1 day-3.6 years), and children whose families expressed that their primary goal was for their child to live as comfortably as possible were less likely to die in the intensive care unit (p=0.03) and more likely to die in the setting of comfort care or withdrawal of life-sustaining interventions (p=0.008). CONCLUSION: PPC involvement for children with AHD focuses on goals of care and psychosocial support. Findings suggest that PPC involvement at end of life supports goal-concordant care. Further research is needed to clarify the impact of PPC on patient outcomes.
Marcus KL; Balkin E M; Al-Sayegh H; Guslits E; Blume E D; Ma C; Wolfe J
Journal Of Pain And Symptom Management
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1016/j.jpainsymman.2017.08.033
Changes In Parents After The Death Of A Child From Cancer
Adaptation Psychological; Bereavement; Death; Adult; Canada; Child; Emotions; Family/ Psychology; Female; Humans; Male; Parents/ Psychology; Siblings/psychology; United States
CONTEXT: Few studies have compared multiple perspectives of changes experienced by parents after a child's death. OBJECTIVES: This study used interviews with bereaved parents and siblings to examine changes in parents during the first year after the death of a child from cancer. METHODS: Mothers (n=36), fathers (n=24), and siblings (n=39) from 40 families were recruited from three hospitals in the U.S. and Canada three to 12 months after the death (M=10.7, SD=3.5). Semistructured interviews with open-ended questions were conducted in the home with each participating parent and sibling separately. Content analysis identified emerging themes, and frequencies were compared between each paired set of reports (mother vs. sibling, father vs. sibling, and mother vs. father). RESULTS: Parents and siblings identified two major categories of change experienced by bereaved parents. These changes occurred in their personal lives (e.g., emotions, perspectives and priorities, physical state, work habits, coping/behaviors, spiritual beliefs, and feeling something is missing) and relationships (e.g., family, others). Ninety-four percent of the mothers, 87% of the fathers, and 69% of the siblings reported parental changes in at least one of these categories. Parents were more likely to report changes in priorities, whereas siblings reported more sadness in parents after the death. CONCLUSION: Positive and negative changes in parents after the death of a child from cancer occur in both personal and relational domains. Additional research is needed to determine the impact of a child's death on bereaved parents over time and to develop strategies to promote healthy adjustment.
Gilmer MJ; Foster TL; Vannatta K; Barrera M; Davies B; Dietrich MS; Fairclough DL; Grollman J; Gerhardt CA
Journal Of Pain And Symptom Management
2012
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="https://doi.org/10.1016/j.jpainsymman.2011.10.017" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2011.10.017</a>
The limitations of "how are you feeling?"
Patient- Centered Care; Patient-reported Outcomes; Pediatric Palliative Care; Quality Of Life; Symptom Assessment
Rosenberg AR; Orellana L; Wolfe J; Dussel V
Journal Of Pain And Symptom Management
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="https://doi.org/10.1016/j.jpainsymman.2017.11.014" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2017.11.014</a>
Communication Challenges of Oncologists and Intensivists Caring for Pediatric Oncology Patients: A Qualitative Study
Communication Barriers; Goals Of Care; Interprofessional Communication; Pediatric Ethics; Pediatric Intensive Care; Pediatric Oncology
CONTEXT: The families of oncology patients requiring intensive care often face increasing complexity in communication with their providers, particularly when patients are cared for by providers from different disciplines. OBJECTIVE: To describe experiences and challenges faced by pediatric oncologists and intensivists and how the oncologist-intensivist relationship impacts communication and initiation of goals of care discussions (GCDs). METHODS: We conducted semi-structured interviews with a convenience sample of ten physicians, including pediatric oncology and intensive care attendings and fellows. RESULTS: We identified key themes (3 barriers, 4 facilitators) to having GCDs with families of oncology patients who have received intensive care. Barriers included challenges to communication within teams because of hierarchy and between teams due to incomplete sharing of information and confusion about who should initiate GCDs; provider experiences of internal conflict about how to engage parents in decision making and about the "right thing to do" for patients; and lack of education and training in communication. Facilitators included team preparation for family meetings; skills for partnering with families; the presence of palliative care specialists; and informal education in communication and willingness for further training in communication. Notably, the education theme was identified as both a barrier and a resource. CONCLUSION: We identified barriers to communication with families both within and between teams and for individual physicians. Formal communication training and processes that standardize communication to ensure completeness and role delineation between clinical teams may improve oncologists' and intensivists' ability to initiate GCDs, thereby fulfilling their ethical obligations of decision support.
Odeniyi F; Nathanson PG; Schall TE; Walter JK
Journal Of Pain And Symptom Management
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/10.1016/j.jpainsymman.2017.06.013" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2017.06.013</a>
Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners
Cancer Epidemiology; General Practitioner; Palliative Therapy; Child; Controlled Study; Cross-sectional Study; Death; Distress Syndrome; Doctor Patient Relation; Fatigue; Human; Human Versus Animal Comparison; Major Clinical Study; Nonhuman; Pain; Panic; Powerlessness; Questionnaire; Sadness; Symptom; Thermometer
Context: Although a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to children with incurable cancer. Objectives: The objective of this study was to explore the perspectives of GPs who care for children with advanced-stage cancer in a home-based setting. Methods: In this cross-sectional study, 144 GPs who provided home-based palliative care to 150 children with incurable cancer from 2001 through 2010 were invited to complete a questionnaire addressing their perspectives regarding: 1) symptom management, 2) collaboration with other health care professionals, 3) the child's death and care after death, and 4) impact of having provided palliative care, scored on distress thermometer (range 0-10). Results: A total of 112 GPs (78%) responded, and 91 GPs completed the questionnaire for 93 patients. The median interval between the child's death and completing the questionnaire was seven years. The most prevalent symptoms reported in the patients were fatigue (67%) and pain (61%). Difficulties with communicating with (14%), coordinating with (11%), collaborating with (11%), and contacting (2%) fellow members of the multidisciplinary treatment team were rare. Hectic (7%) and shocking (5%) situations and panic (2%) around the child's death were rare. GPs reported feelings of sadness (61%) and/or powerlessness (43%) around the time of the patient's death, and they rated their own distress level as relatively high during the terminal phase (median score 6, range 0-9.5). The majority of GPs (94%) reported that they ultimately came to terms with the child's death. Conclusion: In general, GPs appear to be satisfied with the quality of home-based palliative care that they provide pediatric patients with incurable cancer. Communication among health care professionals is generally positive and is considered important. Finally, although the death of a pediatric patient has a profound impact on the GP, the majority of GPs eventually come to terms with the child's death. Copyright _ 2017 American Academy of Hospice and Palliative Medicine.
van der Geest IMM; Bindels PJE; Pluijm SMF; Michiels EMC; van der Heide A; Pieters R; Darlington ASE; van den Heuvel-Eibrink MM
Journal Of Pain And Symptom Management
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/10.1016/j.jpainsymman.2016.09.012" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.09.012</a>
Tumor Talk and Child-Well Being: Perceptions of "good" and "bad" news among parents of children with advanced cancer
CONTEXT: Little is known about how parents of children with advanced cancer classify news they receive about their child's medical condition. OBJECTIVE: To develop concepts of "good news" and "bad news" in discussions of advanced childhood cancer from parent perspectives. METHODS: Parents of children with advanced cancer cared for at three children's hospitals were asked to share details of conversations in the preceding 3 months that contained "good news" or "bad news" related to their child's medical condition. We used mixed methods to evaluate parent responses to both open-ended and fixed response items. RESULTS: Of 104 enrolled parents, 86 (83%) completed the survey. Six (7%) parents reported discussing neither good nor bad news, 18 (21%) reported only bad news, 15 (17%) reported only good news, and 46 (54%) reported both good and bad news (1 missing response). Seventy-six parents (88%) answered free response items. Descriptions of both good and bad news discussions consisted predominantly of "tumor talk" or cancer control. Additional treatment options featured prominently, particularly in discussions of bad news (42%). Child well-being, an important good news theme, encompassed treatment tolerance, symptom reduction, and quality of life. CONCLUSION: A majority of parents of children with advanced cancer report discussing both good and bad news in the preceding 3 months. While news related primarily to cancer control, parents also describe good news discussions related to their child's well-being. Understanding how parents of children with advanced cancer classify and describe the news they receive may enhance efforts to promote family-centered communication.
Feraco AM; Dussel V; Orellana L; Kang TI; Geyer JR; Rosenberg AR; Feudtner C; Wolfe J
Journal Of Pain And Symptom Management
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/10.1016/j.jpainsymman.2016.11.013" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.11.013</a>
Development and Assessment of a Measure of Parent and Child Needs in Pediatric Palliative Care
hospice; Needs Assessment; Only Child; Palliative Care; pediatric palliative care; Psychometrics; Terminal Care
CONTEXT: Pediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life care, and their families. OBJECTIVES: This study examines the psychometrics of and respondents' perceptions about the PCNeeds. METHODS: Parents of children in four outpatient pediatric palliative care programs completed the PCNeeds and the World Health Organization Quality of Life-Brief tool (WHOQOL-BREF). Parents answered questions about demographics and the experience of completing the PCNeeds. Internal scale reliability was measured with Cronbach's alpha. Validity was assessed by correlating the PCNeeds total and subscale scores with the WHOQOL-BREF subscales. Additional respondent perceptions were obtained via written comments and analyzed using content analysis. RESULTS: The 93 respondents were predominantly female (n=69, 74%); white (n=79, 85%); college graduates (n=71, 76%); and married or partnered (n=75, 81%). Internal reliability was acceptable (Cronbach's alpha=.83), and validity correlations with the WHOQOL-BREF subscales were consistent with theoretical expectations (moderate negative correlations ranging from -.36 to -.51). The most frequently cited need not addressed by our survey was sibling impact (n=17, 18%). Twelve parents (13%) indicated that no content was missing. The least met needs were financial impact, family impact, and the child's physical problems besides pain. Sixty-eight percent of parents (n=63) rated completion of the survey as "easy" or "very easy." CONCLUSION: Initial psychometric analysis of the PCNeeds is encouraging, but further study of reliability and validity with more diverse respondents is needed.
Donnelly JP; Downing K; Cloen J; Fragen P; Gupton AW; Misasi J; Michelson K
Journal Of Pain And Symptom Management
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/10.1016/j.jpainsymman.2017.12.484" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2017.12.484</a>
The Effect of Pediatric Palliative Care Policy on Hospice Utilization Among California Medicaid Beneficiaries
California; Hospice Care; medicaid; model; palliative therapy; California; Child; Controlled Study; family study; hospice care; Hospices; Human; human tissue; Incidence; Length of Stay; major clinical study; Medicaid; Only Child; Palliative Care
Context California implemented pediatric palliative care legislations that allowed children to receive curative and supportive care from diagnosis of a life-threatening serious illness in 2010. Palliative care policies may improve access to hospice care as children near end of life. Objectives The aim of this study was to examine the effect of the palliative care policy on hospice utilization for children and their families was investigated. Methods Using 2007 and 2010 California Medicaid data, a difference-in-difference analysis was conducted to analyze hospice use (i.e., hospice enrollment, hospice length of stay) changes for children who resided in pediatric policy counties relative to those who did not. The sample of children in California who died with a life-threatening serious illness in 2007 and 2010 equaled 979 children. Results More than 10% of children enrolled in hospice care with an average of less than 3 days of hospice care. The palliative care policy did not have any effect on hospice enrollment. However, the policy was positively associated with increasing days in hospice care (incidence rate ratio = 5.61, P < 0.05). The rate of hospice length of stay increased by a factor of 5.61 for children in palliative care counties compared with children unaffected by the policy. Conclusion The pediatric palliative care policy was associated with longer lengths of stay in hospice once the children were enrolled. Policies promoting palliative care are critical to ensuring access to hospice care for children.
Lindley LC
Journal Of Pain And Symptom Management
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).
<a href="http://doi.org/10.1016/j.jpainsymman.2016.05.019" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.05.019</a>
Emerging Collaboration Between Palliative Care Specialists and Mechanical Circulatory Support Teams: A Qualitative Study
assisted circulation; medical specialist; palliative therapy; Adult; advance care planning; Article; Child; Clinical Article; decision making; Family; Heart-Assist Devices; heart failure; hospice care; Human; Medicaid; Medicare; Palliative Care; patient referral; Perception; Qualitative Research; Self-Help Devices; semi structured interview; telephone interview; ventricular assist device
Context Despite national requirements mandating collaboration between palliative care specialists and mechanical circulatory support (MCS) teams at institutions that place destination therapy ventricular assist devices, little is known about the nature of those collaborations or outcomes for patients and families. Objectives To assess how Centers for Medicare & Medicaid Services' regulations have changed collaboration between palliative care and MCS teams and how this collaboration is perceived by MCS team members. Methods After obtaining verbal consent, members of MCS teams were interviewed using semistructured telephone interviews. Interviews were transcribed, and content was coded and analyzed using qualitative methods. Results Models for collaboration varied widely between institutions. Several expected themes emerged from interviews: 1) improvements over time in the relationship between palliative care specialists and MCS teams, 2) palliative care specialists as facilitators of advance care planning, and 3) referral to hospice and ventricular assist device deactivation as specific areas for collaboration. Several unexpected themes also emerged: 4) the emergence of dedicated heart failure palliative care teams, 5) palliative care specialists as impartial voices in decision making, 6) palliative care specialists as extra support for MCS team members, and 7) the perception of improved patient and family experiences with palliative care team exposure. Conclusion Although the structure of collaboration varies between institutions, collaboration between MCS teams and palliative care specialists is increasing and often preceded the Centers for Medicare & Medicaid Services requirement. Overall impressions of palliative care specialists are highly positive, with perceptions of improved patient and family experience and decreased burden on MCS team members.
Sagin A; Kirkpatrick JN; Pisani BA; Fahlberg BB; Sundlof AL; O'Connor NR
Journal Of Pain And Symptom Management
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).
<a href="http://doi.org/10.1016/j.jpainsymman.2016.03.017" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.03.017</a>
Intranasal Fentanyl in the Palliative Care of Newborns and Infants
Harlos MS; Stenekes S; Lambert D; Hohl C; Chochinov HM
Journal Of Pain And Symptom Management
2012
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2012.07.009" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2012.07.009</a>
A Strategy for Conversion From Subcutaneous to Oral Ketamine in Cancer Pain Patients: Effect of a 1:1 Ratio
cancer pain; dose ratio; oral ketamine; Subcutaneous ketamine
Context No consensus exists about the most appropriate dose ratio for conversion from parenteral to oral ketamine. Objectives To confirm that a 1:1 dose ratio is suitable for converting subcutaneous (s.c.) to oral ketamine in cancer patients. Methods Patients with opioid poorly responsive cancer pain, who responded to 0.4, 0.6, or 0.8 mg s.c. ketamine bolus, were treated with 0.1, 0.15, or 0.2 mg/kg/h ketamine infusion, respectively. Switching to the oral route, by applying a 1:1 dose ratio, was carried out in patients who experienced adequate pain relief and continued to need ketamine as a coanalgesic. Pain, somnolence, feelings of insobriety, confusion, and cardiovascular parameters were assessed throughout the process. Results Twenty-nine patients were enrolled in the study. Ketamine infusion decreased pain intensity from severe to no pain or slight pain in 23 of 29 and six of 29 patients, respectively. The median of s.c. ketamine doses was 0.2 mg/kg/h (range 0.1–0.5). After oral switching, 27 of 29 patients remained as successfully controlled as when receiving s.c. ketamine. The other two patients needed a slight dose ratio readjustment, to 1:1.3 and 1:1.5, to maintain pain control. The median of oral ketamine doses was 300 mg/day (interquartile range 240–382.5). Seven of 29 patients receiving s.c. ketamine developed moderate and transitory side effects, such as feelings of insobriety and somnolence. No side effects were present while receiving oral ketamine. No significant changes were observed in cardiovascular parameters. Conclusion A 1:1 dose ratio for conversion from s.c. to oral ketamine is safe and effective in cancer pain patients.
Benítez-Rosario MA; Salinas-Martín A; González-Guillermo Toribio; Feria M
Journal Of Pain And Symptom Management
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2010.08.017" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2010.08.017</a>
Shades of truth: Cultural and psychological factors affecting communication in pediatric palliative care
Palliative Care; Pediatrics; Communication; Charting the Territory; Neoplasms; Best Practices (Davies); truth telling; clinical ethics; cultural factors; hepatoblastoma; Professional Ethics; Sociocultural Factors; Truth
Communication with children who have life-threatening illnesses is a major challenge. Communication practices are greatly influenced by factors such as the child’s age, the parents’ wishes, and the cultural norms. This article presents the case of a 12-year-old Japanese boy with advanced hepatoblastoma. The patient also was diagnosed with Asperger’s syndrome, which impairs interpersonal communication. The case is discussed from the perspective of clinical ethics, especially with regard to truth telling. The health care team faced an ethical dilemma because of the complications involved. Physicians treating children with cancer should be aware of these issues to be able to effectively communicate with their patients. (PsycINFO Database Record (c) 2011 APA, all rights reserved) (journal abstract)
Hatano Y; Yamada M; Fukui K
Journal Of Pain And Symptom Management
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2010.12.002" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2010.12.002</a>
An advance directive in two questions.
Female; Humans; Palliative Care; Aged; Resuscitation Orders; Fatal Outcome; DNAR; Pain/et [Etiology]; Advance Directives; Health care reform; Living Wills; Meningitis/et [Etiology]; Pain Management; Pancreatic Neoplasms/co [Complications]; Pancreatic Neoplasms/pa [Pathology]; Pancreatic Neoplasms/th [Therapy]
It has been two decades since advance directives have become an integral part of health care. Impediments to their optimal usage are common and multifactorial. Decisions commonly have to be made when patients are unable to do so or choose not to participate in decision making, often at the end of life. The use of two questions, 1) "If you cannot, or choose not to participate in health care decisions, with whom should we speak?" and 2) "If you cannot, or choose not to participate in decision making, what should we consider when making decisions about your care?," may accomplish the major goals of an advance directive.Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Mahon MM
Journal Of Pain And Symptom Management
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2011.01.002" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2011.01.002</a>
“Burst” Ketamine for Refractory Cancer Pain: An Open-Label Audit of 39 Patients Kate Jackson, MB BS, DTM&H, FRCA, FAChPM, Michael Ashby, MB
The results of a novel approach to the use of ketamine in refractory cancer pain are reported. In this prospective, multicenter, unblinded, open-label audit, 39 patients (with a total of 43 pains) received a short duration (3 to 5 days) ketamine infusion. The initial dose of 100 mg/ 24 hr was escalated if required to 300 mg/24 hr and then to a maximum dose of 500 mg/ 24hr. The overall response rate was 29/43 (67%). Analysis of results according to pain mechanisms showed that 15/17 somatic and 14/23 neuropathic pains responded. In 5 patients who appeared to respond, it is possible that another concurrent intervention may have contributed in whole or part for the pain relief observed. After cessation of ketamine, 24/29 maintained good pain control, with a maximum documented duration of eight weeks. However, 5 of the initial 29 responders experienced a recurrence of pain within 24 hours, and ketamine was recommenced. Of these, 2 underwent another intervention for pain control while 3 continued on ketamine until their deaths between two and four weeks later. Twelve patients reported adverse psychomimetic effects, with the incidence rising with increasing dose. Four of these were non-responders and the ketamine was stopped. Eight were responders, and in 3 the adverse effects were rendered acceptable with dose reduction; the other 5 rejected a dose reduction. The results reported suggest the need for further investigation of the place of ketamine in cancer pain management.
2001-10
Jackson K; Ashby M; Martin P; PallMed Dip; Pisasale M; Brumley D; Hayes B
Journal Of Pain And Symptom Management
2001
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/S0885-3924(01)00340-2" target="_blank" rel="noreferrer">10.1016/S0885-3924(01)00340-2</a>
“Burst” ketamine for refractory cancer pain: an open-label audit of 39 patients
2001
Jackson K; Ashby M; Martin P; Pisasale M; Brumley D; Hayes Barbara
Journal Of Pain And Symptom Management
2001
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
The Measurement of Symptoms in Children with Cancer
Child; Female; Humans; Male; symptoms; Pediatrics; Longitudinal Studies; Sleep Stages; Children; adolescent; Pain/etiology; Oncology at EOL; cancer; Cough/etiology; Fatigue/etiology; Eating Disorders/etiology; malignancy; Nausea/etiology; Neoplasms/complications/physiopathology/psychology; symptom distress
The purpose of this study was to determine symptom prevalence, characteristics, and distress in children with cancer. The Memorial Symptom Assessment Scale (MSAS) 10–18, a 30-item patient-rated instrument adapted from a previously validated adult version, provided multidimensional information about the symptoms experienced by children with cancer. This instrument was administered to 160 children with cancer aged 10–18 (45 inpatients, 115 outpatients). To confirm the instrument's reliability and validity, additional data about symptoms were collected from both the parents and the medical charts, and retesting was performed on a subgroup of inpatients. Patients could easily complete the scale in a mean of 11 minutes. The analyses supported the reliability and validity of the MSAS 10–18 subscale scores as measures of physical, psychological, and global symptom distress, respectively. Symptom prevalence ranged from 49.7% for lack of energy to 6.3% for problems with urination. The mean (± SD) number of symptoms per inpatient was 12.7 ± 4.9 (range, 4–26), significantly more than the mean 6.5 ± 5.7 (range, 0–28) symptoms per outpatient. Patients who had recently received chemotherapy had significantly more symptoms than patients who had not received chemotherapy for more than 4 months (11.6 ± 6.0 vs. 5.2 ± 5.1), and those patients with solid tumors had significantly more symptoms than patients with either leukemia, lymphoma, or central nervous system malignancies (9.9 ± 7.0 vs. 6.8 ± 5.5 vs. 6.8 ± 5.0 vs. 8.0 ± 6.1). The most common symptoms (prevalence > 35%) were lack of energy, pain, drowsiness, nausea, cough, lack of appetite, and psychological symptoms (feeling sad, feeling nervous, worrying, feeling irritable). Of the symptoms with prevalence rates > 35%, those that caused high distress in more than one-third of patients were feeling sad, pain, nausea, lack of appetite, and feeling irritable. Subscale scores demonstrated large variability in symptom distress and could identify subgroups with high distress. The prevalence, characteristics, and distress associated with physical and psychological symptoms could be quantified in older children with cancer. The data confirm a high prevalence of symptoms overall and the existence of subgroups with high distress associated with one or multiple symptoms. Symptom distress is relatively higher among inpatients, children with solid tumors, and children who are undergoing antineoplastic treatment. Systematic symptom assessment may be useful in future epidemiological studies of symptoms and in clinical chemotherapeutic trials. Symptom epidemiology may also provide a focus for future clinical trials related to symptom management in children with cancer.
2000-05
Collins J J; Byrnes ME; Dunkel IJ; Lapin J; Nadel Traci; Thaler H; Polyak Tanya; Rapkin B; Portenoy RK
Journal Of Pain And Symptom Management
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/10.1016/S0885-3924(00)00127-5" target="_blank" rel="noreferrer">10.1016/S0885-3924(00)00127-5</a>
Outcome evaluation in a home palliative care service
Female; Male; Adult; Prospective Studies; Aged; 80 and over; Non-U.S. Gov't; Human; quality of life; Palliative Care; Support; Middle Age; home care services; Outcome Assessment (Health Care)
The complexity of assessing the impact of palliative care is much greater than in other fields of medicine, due to the shortcomings of traditional outcome indicators. We conducted a prospective study to describe the patient's quality of life at the outset and during palliative care at home and to define some potential indicators of palliative care outcomes with the aim of assessing the quality of home care as provided by a palliative care unit. Seventy-three patients who received care at home were assessed. The median survival in palliative home care was 29 days. To evaluate the degree of symptom distress, we used an Italian version of the Symptom Distress Scale. Assessing the quality-of-life pattern over time, we observed that palliative care was effective in mitigating pain and, at least in part, in stimulating appetite, curbing nausea, and controlling psychological aspects. The subscales referring to social and functional aspects steadily worsened. The difficulties encountered (the high percentage of missing data, the considerable number of patients treated for less than 10 days, etc.) should be a warning against using only one assessment instrument. It is worthwhile defining the various potential outcomes of palliative care even though all results will not always be measurable in every patients. Only a global assessment, a "multiple outcomes approach," based on different indicators, would allow for evaluation of the outcome of the care process.
1997
Peruselli C; Paci E; Franceschi P; Legori T; Mannucci F
Journal Of Pain And Symptom Management
1997
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
Development of the World Health Organization Guidelines on Cancer Pain Relief and Palliative Care in Children
Child; Practice Guidelines; Human; Neoplasms/complications; Pain/etiology/therapy; Palliative Care/methods; World Health Organization
Assess pain regularly throughout the course of treatment. Follow the WHO Analgesic Ladder for selecting pain-relief drugs, that is, a stepwise approach to analgesic management, where a child's pain severity determines the level of analgesics. Use practical cognitive, behavioral, physical, and supportive therapies, combined with appropriate drug treatment. Administer adequate analgesics doses "by the clock," that is, at regular times, not PRN. Use oral routes for administering analgesics, and avoid painful routes of administration, whenever possible. Administer a sufficient analgesic dose to allow children to sleep throughout the night. Anticipate and treat side effects aggressively.
1996
McGrath PA
Journal Of Pain And Symptom Management
1996
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
Judging the effectiveness of analgesia for children and adolescents during vaso-occlusive events of sickle cell disease
Child; Female; Humans; Male; Analgesics; Anemia; adolescent; P.H.S.; Research Support; U.S. Gov't; Interviews; Pain/physiopathology; Opioid/therapeutic use; Analgesia/standards; Nalbuphine/therapeutic use; Sickle Cell/complications; Vascular Diseases/etiology/physiopathology/therapy
The effectiveness of analgesia during sickle cell crisis was examined in this descriptive, exploratory study. Pain scores (using the African-American Oucher and the Adolescent Pediatric Pain Tool) and analgesics administered were examined during a 2-hour observation/interview in the hospital while children/adolescents with sickle cell disease (SCD) experienced a vaso-occlusive episode (VOE). A convenience sample of twenty-one 6- to 16-year olds with SCD was included. Evidence indicated that 15 of the 21 children in the sample were in moderate to severe pain during their interviews, indicating that the analgesics did not effectively control their pain. Most participants (17) had received nalbuphine as the primary analgesic by intravenous infusion drip and/or patient-controlled analgesia pump. Many reasons were identified for the inadequate analgesia. The results suggested that the pain of SCD is very complex, requiring continuous adjustment of comfort measures, especially analgesics. More research is needed to examine pain control in children with SCD.
2000
Beyer JE
Journal Of Pain And Symptom Management
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/10.1016/s0885-3924(99)00134-7" target="_blank" rel="noreferrer">10.1016/s0885-3924(99)00134-7</a>
Methadone response in advanced cancer patients with pain followed at home
Female; Humans; Male; Pain; Pain Measurement; Analgesics; Prospective Studies; Middle Aged; Sex Factors; Neoplasms/physiopathology; Methadone/administration & dosage/adverse effects/therapeutic use; Opioid/administration & dosage/adverse effects/therapeutic use; home care services; Intractable/drug therapy
Concerns about the safety of therapy with methadone, which may arise because of its pharmacokinetic characteristics and inappropriate dosing, may deter clinicians from using this drug, especially in elderly patients. Experience is accumulating that the drug may be used safely and successfully if low doses are given initially and care is taken in the titration of the dose against the pain. A prospective study was carried out in a consecutive sample of 45 advanced cancer patients followed at home, who had never received other strong opioids for their pain. Patients were treated with an oral liquid preparation of methadone, which was administered 2-3 times daily, according to need. Doses were kept as low as possible and were titrated to achieve acceptable analgesia with minimal adverse effects. The methadone starting dose (MSD) at referral, the maximum dose of methadone (MMD), the days of methadone treatment, the use of other nonopioid analgesics, symptoms associated with methadone therapy, pain intensity, and pain mechanism were recorded. Methadone escalation index percentage (MEI%) and methadone escalation index in mg (MEI mg) were calculated from these parameters. No correlations between age and gender, and MSD, MMD, days on methadone, VAS and symptoms were found. No significant differences were found in pain mechanisms, age, and other parameters, including methadone-related symptoms. Treatment of pain with methadone provides important support to patients with cancer followed at home and the risks are low with individually titrated doses, even in older patients or in the presence of a neuropathic pain mechanism.
1999
Mercadante S; Casuccio A; Agnello A; Barresi L
Journal Of Pain And Symptom Management
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0885-3924(99)00048-2" target="_blank" rel="noreferrer">10.1016/s0885-3924(99)00048-2</a>
Pain medication during terminal care of children with cancer
Palliative Care; Terminal Care; Analgesics; Pain; Morphine; Analgesia; Narcotics; Palliative treatment; Children; Administration; Oral; Neoplasms; Opioid
The purpose of this study was to evaluate the need for pain medication and the adequacy or inadequacy of the analgesia achieved, in children with cancer who died while in terminal care. Of the 100 pediatric patients with cancer treated at the Children's Hospital, University of Helsinki, Finland, who died during 1987-1992, 70 died while in terminal care. The underlying diseases were leukemia (N=25), solid tumors (N=24), and brain tumors (N=21). Of these children, 60% were treated at home, 29% at hospital, and 11% at both. The assessment of pain during terminal care was retrospective and included analysis of the patients' records and a structured interview of the two parents separately. In total, 62 children (89%) received regular pain medication, with a mean duration of 17 days in children with leukemia, 58 days in those with solid tumors, and 66 days in those with brain tumors. Medication was usually started with anti-inflammatory drugs, then changed to oral opioids when deemed necessary, and finally to parenteral opioids. Parenteral morphine was administered to 40 children, to 30 as a continuous infusion through a central venous line. The dose of morphine was 0.8 mg/kg/day at the start and was increased to 4.9 (range, 0.2-55) mg/kg/day. Of the 62 children who received regular pain medication, the majority (81%) had adequate analgesia. In 19%, analgesia had been suboptimal. In conclusion, the vast majority of children with cancer need regular pain medication while in terminal care. This can be administered adequately at home, even if continuous intravenous infusions are required.
1998
Sirkia K; Hovi L; Pouttu J; Saarinen-Pihkala U
Journal Of Pain And Symptom Management
1998
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0885-3924(98)00366-2" target="_blank" rel="noreferrer">10.1016/s0885-3924(98)00366-2</a>
Conceptual models and the outcomes of caring
Conceptual models and the taxonomies associated with them are inherent tools of goal-directed activity. Conceptual models partition reality, discerning differences within a phenomenologic continuum; a process that is a fundamental requisite for measurement. This paper presents theoretical observations regarding the influence of conceptual models on goal-directed endeavors and explores specific implications for outcome measurement in palliative care. The dominant model of end-of-life care is the problem-based model of adult medicine. In clinical orientation, hospice and palliative care bear strong similarities to a pediatric and family medical model for early childhood care. This essay examines salient features of a conceptual model for palliative care that draws on a life-cycle or developmental model of human experience in critical transitions and explores application of this model to palliative care. [References: 18]
1999
Byock IR
Journal Of Pain And Symptom Management
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0885-3924(98)00139-0" target="_blank" rel="noreferrer">10.1016/s0885-3924(98)00139-0</a>
Research agenda for developing measures to examine quality of care and quality of life of patients diagnosed with life-limiting illness
Palliative Care; Terminal Care; Terminally Ill; Patients; Research Design; Quality of Health Care; quality of life
Despite the universality of dying, research has not focused on developing conceptual models and measurement tools for examining the quality of care and quality of life of dying patients and their loved ones. We present here a vision and research agenda for the development of a Tool Kit of Instruments to Measure End of Life Care (TIME). Instruments for inclusion in the eventual "Tool Kit" should be patient-focused and family-centered, clinically meaningful, administratively manageable, and psychometrically sound. Prioritizing domains to measure quality of care should be based on consumer input and synergistic with ongoing efforts to formulate guidelines and standards of care. For this vulnerable population, research is needed regarding the timing and sources of data collection. In order to achieve maximal benefit, ultimately measurement tools must be incorporated into existing measurement systems and consideration be given to generating informative reports which leads to institutional action to improve the quality of care. [References: 29]
1999
Teno JM; Byock I; Field MJ
Journal Of Pain And Symptom Management
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0885-3924(98)00134-1" target="_blank" rel="noreferrer">10.1016/s0885-3924(98)00134-1</a>
Methodological challenges for measuring quality of care at the end of life
Humans; Research Design; Quality of Life/psychology; Quality Assurance; Terminal Care/standards; Health Care/methods; Health Care/statistics & numerical data
Measurement is a fundamental step in improving the quality of care for dying patients and their families. Yet, there are important methodological challenges to be addressed. In conducting surveys about the patient and family experience, research is needed regarding the relative merits and cost-effectiveness of prospective or retrospective surveys after the patient’s death. Proxies are an important source of information given that the majority of patients can not be interviewed in the last week of life. Research is needed to understand who is best able to serve as a proxy and the validity of their reports. The cost-effectiveness and comparability of alternative data collection strategies need to be examined. These and other important issues need to be addressed in designing reliable, valid, and clinically manageable measures.
1999
Fowler FJ; Coppola KM; Teno JM
Journal Of Pain And Symptom Management
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0885-3924(98)00133-x" target="_blank" rel="noreferrer">10.1016/s0885-3924(98)00133-x</a>
A randomized, controlled trial of intravenous clodronate in patients with metastatic bone disease and pain
Female; Humans; Male; Pain; Adult; Analgesics; Aged; Middle Aged; Treatment Outcome; Analysis of Variance; Chi-Square Distribution; Cross-Over Studies; 80 and over; Comparative Study; Injections; Intravenous; Dose-Response Relationship; Drug; Clodronate; Pain Measurement/drug effects; Clodronic Acid/administration & dosage; Non-Narcotic/administration & dosage; Intractable/drug therapy/etiology; Bone Neoplasms/complications/secondary
To evaluate the effectiveness of intravenous clodronate in ameliorating refractory bone pain in patients with metastatic bone disease, 60 patients with established osseous metastases and persistent bone pain were randomized to receive either clodronate (600 mg or 1500 mg in 500 mL of normal saline) or 500 mL of saline as placebo. After 2 weeks, the patients were crossed over to receive the alternate treatment. After another 2 weeks, each patient and investigator made a blinded choice. Daily visual analogue scales (VAS) and analgesic diaries were recorded throughout the study period. Forty-six patients were evaluable (77%). A treatment x period interaction was identified in the VAS and daily morphine equivalent dose (DMED) scores. First period analysis of the VAS scores for general pain, pain at rest, and pain upon movement demonstrated an average reduction of 13, 14, and 24 mm, respectively, from baseline, but were not significantly different from changes following placebo. The average change in DMED was -6.4 (SE = 2.9) following clodronate and was +24.6 (SE = 14.9) following placebo (p = 0.03). In the blinded choice of which agent resulted in improvement in pain, 26 (57%) patients chose clodronate, 12 (26%) chose placebo, and eight (17%) had no preference (p = 0.0021). For the investigators who also made a blinded selection, clodronate was chosen in 30 (65%) patients, placebo in ten (22%) patients, and no difference was apparent in six (13%) (p < 0.0001). Intravenous clodronate appeared to have analgesic effect in patients with refractory bone pain due to metastatic bone disease. The optimal dose and duration of effect require further evaluation, particularly in patients with stable disease and persistent bone pain.
1997
Ernst DS; Brasher P; Hagen N; Paterson AH; MacDonald RN; Bruera E
Journal Of Pain And Symptom Management
1997
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0885-3924(97)00075-4" target="_blank" rel="noreferrer">10.1016/s0885-3924(97)00075-4</a>
Implementing national standards for cancer pain management: program model and evaluation
The purpose of this quasi-experimental (pre and posttest) study was to test a model pain management program (PMP) to implement the American Pain Society (APS) quality assurance standards for the management of acute and chronic cancer pain using a continuous quality improvement (CQI) approach to improve professionals' knowledge and skills, patient satisfaction, and to identify areas needing improvement. The sample consisted of 1210 nurse responses and 698 interviews of patients with pain during hospitalization at a major urban cancer center. The PMP provided a structure (standards), educational opportunities, and training in CQI methods. Outcome measures included a patient evaluation questionnaire and concerns checklist; nurse knowledge, attitude and barriers questionnaire; and focus groups to identify areas needing improvement. Significant improvements were found in patients' satisfaction, nurses' knowledge and attitude scores, and reductions in nurses' perceptions of barriers. Focus groups revealed the need for improved communication among disciplines about pain and better assessment of patients unable to self-report. The program met its goal of implementing the APS standards, educating nurses, and identifying "system" problems, and improving overall patient satisfaction.
1996
Bookbinder M; Coyle N; Kiss M; Goldstein ML; Holritz K; Thaler H; Gianella A; Derby S; Brown M; Racolin A; Ho MN; Portenoy RK
Journal Of Pain And Symptom Management
1996
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0885-3924(96)00204-7" target="_blank" rel="noreferrer">10.1016/s0885-3924(96)00204-7</a>
Facilitating the care of terminally ill children.
Child; Female; Male; Adult; Longitudinal Studies; adolescent; Preschool; infant; Human; Case Report; Palliative Care; Terminal Care; Child Health Services
Life-threatening illness is fortunately rare in children. Some children, however, will need palliative care for symptom control; psychological support may be needed by the child and the child's family; and families may require help with decisions about life-prolonging treatment. Providing consistent high-quality care for a relatively uncommon problem is difficult. Adult palliative care services, liaison with pediatricians can help provide this care.
1996
McQuillan R; Finlay I
Journal Of Pain And Symptom Management
1996
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0885-3924(96)00186-8" target="_blank" rel="noreferrer">10.1016/s0885-3924(96)00186-8</a>
Effects of high dose opioids and sedatives on survival in terminally ill cancer patients
Female; Humans; Male; Palliative Care; Aged; Middle Aged; Survival Analysis; Inpatients; Forecasting; Dose-Response Relationship; Drug; Neoplasms/drug therapy; Critical Illness/therapy; Hypnotics and Sedatives/administration & dosage/adverse effects/therapeutic use; Narcotics/administration & dosage/adverse effects/therapeutic use
Concerns that high dose opioids and sedatives might shorten patient survival could contribute to insufficient symptom alleviation for terminally ill cancer patients. To examine the effects of opioids and sedatives prescribed in the final 48 hours on patient survival, a re-analysis of the prospectively collected data was performed on 209 hospice inpatients. Patient characteristics and clinical symptoms were prospectively recorded, and information about the use of opioids and sedatives in the last two days was collected by a chart review. Opioids were prescribed in 82% of the patients, with a median dose of 80 mg oral morphine equivalent (OME)/48 hours. Sixty percent received some sedative medications, mainly haloperidol (43% of total sample, 7.5 mg/48 hours), midazolam (23%, 23mg/48 hours), and hydroxyzine (15%, 50 mg/48 hours). There were no significant differences in survival between the patients who received different doses of opioids ( or =600 mg OME/48 hours) and of benzodiazepines (0, 1--59, and > or =60 mg parental midazolam equivalent/48 hours). Also, the survival of patients with haloperidol, hydroxyzine, and other sedative medications did not differ from those without. Furthermore, an addition of use of opioids and sedatives in the final 48 hours into the multiple regression model for survival prediction achieved no significant increase in predictability. In conclusion, opioids and sedatives used for symptom control in the last days are not associated with patient survival. They are safe and useful medications to palliate severe distress in the terminal stage of cancer when administered with a low initial dosage and adequate titration.
2001
Morita T; Tsunoda J; Inoue S; Chihara S
Journal Of Pain And Symptom Management
2001
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0885-3924(01)00258-5" target="_blank" rel="noreferrer">10.1016/s0885-3924(01)00258-5</a>
How children die in hospital.
Child; Humans; Death; Palliative Care; symptoms; Euthanasia; Communication; Death; Resuscitation Orders; Longitudinal Studies; Critical Care; Children; Children; Preschool; infant; DNAR; Human; Pediatric intensive care unit; Passive; Hospital Mortality; Infant Mortality; Canuck Place 15 year chart review; dying; Infants; Pediatric intensive care unit
A retrospective analysis was performed to describe the course of terminal care provided to dying hospitalized children in terms of symptom assessment and management, and communication and decision-making, at the end of life. Seventy-seven of 236 infants and children who died after hospital admission in Edmonton, Canada between January 1996 and June 1998 met entry criteria. Only children who died after a minimum hospitalization of 24 hours in the case of chronic illness or after a minimum hospitalization of 7 days following an acute event were included. Unanticipated deaths were excluded. Eighty-three percent of children died in intensive care settings (64/77), and 78 % (60/77) were intubated prior to their death. Symptoms were recorded in narrative progress notes. Five of 77 (6%) charts contained specific pain assessment and treatment records. Opioid analgesia was provided in 84 % of all cases (65/77). Six (8 %) patients had do not resuscitate (DNNR) orders preceding final hospital admission and 56/71 (79%) remaining patients had documented discussion resulting in DNR decision during final hospital admission. Median time from DNR to death was < 1 day. Mode of death was withdrawal of therapy in 33/77 (43 %), no cardiopulmonary resuscitation (CPR) in 26/77 (34 %), andfailed CPR in 13/77 (17%). Five children were declared brain dead. In only one case was there evidence in the medical record of the possibility of death being discussed explicitly with the patient. Decision-making regarding end-of-life issues in this pediatric population was deferred very close to the time of death, and only after no remaining curative therapy was available. Acuity of care was very high prior to death. Children are rarely told that they are dying.
2000
McCallum DE; Byrne P; Bruera E
Journal Of Pain And Symptom Management
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/10.1016/s0885-3924(00)00212-8" target="_blank" rel="noreferrer">10.1016/s0885-3924(00)00212-8</a>
An evaluation of the Faces Pain Scale with young children
Child; Female; Humans; Male; Reproducibility of Results; Facial Expression; Preschool; Non-U.S. Gov't; Research Support; Pain Measurement/methods/psychology
The psychometric characteristics of the Faces Pain Scale (FPS) were evaluated in three groups of preschool and school-aged children (3. 5-4.5; 4.5-5.5 and 5.5-6.5 years, respectively). The FPS was adequately comprehended by even young children. It was easily administered and was valid and discriminating. It did not, however, possess the linear scalability claimed by its authors.
2000
Hunter M; McDowell L; Hennessy R; Cassey J
Journal Of Pain And Symptom Management
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/10.1016/s0885-3924(00)00171-8" target="_blank" rel="noreferrer">10.1016/s0885-3924(00)00171-8</a>
Are special ethical guidelines needed for palliative care research?
Humans; Guidelines as Topic; Research; Ethics; Medical; Death and Euthanasia; Palliative Care/standards; Biomedical and Behavioral Research; Multi-site Ethics
Recent studies have made it clear that there are substantial opportunities to improve end-of-life care. Doing so will require solid evidence on which to base clinical and policy decisions and this, in turn, will require a focused research effort. However, research that involves patients near the end of life creates numerous ethical challenges. Moreover, the inclusion of dying patients in research may make many providers uncomfortable. In short, there seems to be something ethically unique, and uniquely challenging, about palliative care research. This paper considers 4 arguments for this unique status: 1) dying patients are especially vulnerable; 2) adequate informed consent may be difficult to obtain; 3) balancing research and clinical roles is particularly difficult; and 4) the risks and benefits of palliative research are difficult to assess. We conclude that the first three of these arguments are weak, and that special guidelines are not needed. We suggest, however, that the fourth argument may have some merit, and should be the focus of discussion among investigators, providers, and patients.
2000
Casarett DJ; Karlawish J
Journal Of Pain And Symptom Management
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/10.1016/s0885-3924(00)00164-0" target="_blank" rel="noreferrer">10.1016/s0885-3924(00)00164-0</a>
Variability of analgesic practices for hospitalized children on different pediatric specialty units
Child; Female; Humans; Male; Pediatrics; Preschool; Non-U.S. Gov't; P.H.S.; Research Support; U.S. Gov't; Pain/drug therapy; Analgesics/administration & dosage/therapeutic use; Hospital Units
This study examined the differences in the prescription and administration of analgesics in eight pediatric specialty units. Medical records of patients (n = 153) who were reported by nurses to be having pain were reviewed. Results showed that there were variations in the type of analgesics prescribed and administered in the different units. Mean doses of opioids were slightly subtherapeutic. The mean doses of the nonsteroidal anti-inflammatory drugs and adjuvants were all within the therapeutic range. There were large intervals between doses of medications. Because few patients had pain scores recorded before and after analgesic administration, evidence of relief was inconclusive, and the actual effectiveness of analgesics could not be consistently evaluated. Undertreatment of pain may result from administration of subtherapeutic analgesic doses, long intervals between administrations of doses, lack of proper documentation to guide practice, or a combination of these reasons.
2000
Jacob E; Puntillo KA
Journal Of Pain And Symptom Management
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/10.1016/s0885-3924(00)00162-7" target="_blank" rel="noreferrer">10.1016/s0885-3924(00)00162-7</a>
Pediatric pain practices: a national survey of health professionals
Child; Humans; United States; Pain Measurement; Physician's Practice Patterns; Questionnaires; Hospitals; Teaching; Pain/therapy
The purpose of this study was to examine how health-care providers in U.S. teaching hospitals assess and manage children's pain. A 59-item questionnaire was sent to institutions with pediatric residency programs listed in the 1992 National Residency Matching Program. Two hundred and twenty-seven questionnaires were sent and 113 were returned. Two-thirds were from nurses, one-third from physicians. Sixty percent of the respondents stated that they had standards of care or protocols for pain in their institutions, but only one-quarter reported that the standards were followed 80% or more of the time. Use of formal pain-assessment tools was reported by 73% of the sample. Respondents reported that the effectiveness of pain assessment and management was lower for infants and younger children. Only 35% of the sample indicated it was "likely" or "very likely" that parents would be involved in planning prior to a painful event. Several obstacles to adequate pain management were identified by the respondents: knowledge deficit, attitudes, and resources.
1996
Broome ME; Richtsmeier A; Maikler V; Alexander M
Journal Of Pain And Symptom Management
1996
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/0885-3924(95)00205-7" target="_blank" rel="noreferrer">10.1016/0885-3924(95)00205-7</a>
A double-blind, crossover trial of intravenous clodronate in metastatic bone pain
Female; Humans; Male; Pain Measurement; Adult; Aged; Middle Aged; Double-Blind Method; 80 and over; Infusions; Intravenous; Clodronate; Clodronic Acid/administration & dosage/therapeutic use; Bone Neoplasms/physiopathology/secondary; Pain/diagnosis/drug therapy/etiology
After a baseline symptom and laboratory assessment, 24 patients with metastatic bone disease and pain were randomized to receive either a 4-hr intravenous infusion of 2-dichloromethylene bisphosphonate (Cl2MDP), 600 mg in 500 mL of normal saline, or a 4-hr placebo infusion, 500 mL of normal saline. The administration was double blind. After 1 wk, the assessment was repeated and the patients were crossed over to the alternate treatment. After 1 more wk, a final assessment and blinded choice by the patient and investigator took place. Of the 21 evaluable patients, 12 (57%) chose the Cl2MDP and 4 (19%) chose the placebo; 5 (24%) patients did not have a specific preference (p = NS). The investigator chose the Cl2MDP in 14 (67%) cases, placebo in 6 (29%) cases and was unable to discern a difference in 1 (5%) case (p less than 0.05). The patients and investigator made similar selections in 16 (76%) instances. On the visual analogue scale assessments, a significant decrease in pain scores was observed following the Cl2MDP infusion (p less than 0.01) and an increase in activity scores was also demonstrated (p less than 0.01). No significant difference in the daily oral morphine equivalent analgesic requirement was demonstrated for either arm. No difference in clinical and laboratory parameters of toxicity was evident between the placebo and Cl2MDP arms of the trial. Our preliminary findings suggest that Cl2MDP is safe, and has analgesic properties that may prove to be useful in the management of metastatic bone pain.
1992
Ernst DS; MacDonald RN; Paterson AH; Jensen J; Brasher P; Bruera E
Journal Of Pain And Symptom Management
1992
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/0885-3924(92)90101-m" target="_blank" rel="noreferrer">10.1016/0885-3924(92)90101-m</a>