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>
"It's not about treatment, it's how to improve your life": The lived experience of occupational therapy in palliative care
Professional-patient Relationship; Psychology; Adolescent; Adult; Aged; Australia; Female; Human; Male; Middle Aged; Occupational Therapy; Palliative Therapy; Procedures; Qualitative Research; Quality Of Life; Standards; Very Elderly
OBJECTIVES: A key aim of palliative care is to improve the quality-of-life of people with a life-threatening illness. Occupational therapists are well positioned to contribute to this aim due to their broad range of interventions, client-centeredness and focus on occupation. However, there is a limited understanding of how occupational therapy contributes to the end-of-life experience, which is crucial to providing optimal care. The aim of this study is to investigate the lived experience of occupational therapy in palliative care for people with a life-threatening illness. METHOD: A hermeneutic interpretive phenomenological approach was adopted. Semi-structured interviews were conducted with eight participants recruited from inpatient and outpatient sectors of a specialist palliative care hospital in Sydney, Australia. RESULTS: The two themes developed from participant responses were: (1) occupational therapy provides comfort and safety and (2) trusting the occupational therapist to know what is needed. SIGNIFICANCE OF RESULTS: This study gives insight into the ways in which people with a life-threatening illness experience occupational therapy in palliative care. In addition, it provides a starting point to guide practice that is attentive to the needs of people with a life-threatening illness at end-of-life, thus enhancing client-centered care.
Badger S; Macleod R; Honey A
Palliative & Supportive Care
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/10.1017/S1478951515000826" target="_blank" rel="noreferrer">10.1017/S1478951515000826</a>
Palliative radiation therapy for pediatric patients: Parental perceptions
Perception; Analgesia; Brain; Breathing; Cancer Staging; Child; Comfort; Disease Course; Expectation; Female; Human; Institutional Review; Male; Palliative Therapy; Prevention; Prospective Study; Quality Of Life; Questionnaire; Radiotherapy; Spinal Cord Compression; Statistics
Purpose/Objective(s): Palliative radiation therapy (pRT) for pediatric cancer patients is often used to treat pain, neurologic symptoms, and other conditions from progressive cancer that affects quality of life. However, though the doses used are generally lower than those used for curative treatment, pRT may still introduce undesirable side effects. A parent's decision to pursue additional anti-cancer therapy towards the end of their child's life may be challenging, as the perceived risk-versus-benefit ratio may be altered depending on their knowledge and expectations for the pRT. As anti-cancer directed treatment continues to be offered, the line between curing and palliation may become blurred. The goal of this study was to explore parental perceptions of pRT with regards to its purpose and expected outcome. Purpose/Objective(s): Forty-five children referred for pRT were enrolled in a prospective institutional review board-approved study. At the time of initial consultation, parents were counseled regarding the indication for pRT and the expected outcomes of treatment. At one to three months after treatment completion, a questionnaire was given to parents to assess their understanding of the role of pRT for their child. They were asked to specify the reasons for pRT as well as their expectations of the treatment outcome. Descriptive statistics were used to analyze the results of the questionnaire. Results: The main indications for pRT in this cohort were pain (44%), spinal cord compression (3%), neurologic symptoms from brain mass (18%), leptomeningeal involvement (3%), asymptomatic radiologic progression (18%), and other indications (13%). When asked about the reasons for pRT in their child, parents reported the following: pain relief (51%), addressing new disease such as radiologic progression (40%), prevention of damage to spinal cord (11%), and help with breathing (2%). 49% listed additional reasons, including control of existing tumors or prevention of pain (as opposed to pain control). When asked about their expectations for the pRT, 76% of parents marked improvement in quality of life. An equal proportion (76%) also expected prolongation of their child's life. 53% included pain relief as one of their expectations. Interestingly, 40% of parents expected the pRT to also cure their child's malignant disease. Conclusion: Radiation therapy is an important modality in palliative care for children with end-stage cancer. Improved quality of life through pRT sometimes blurs the distinction between palliative and curative intent of the treatment. In this study, we found that a large proportion of parents perceived pRT to play a curative role for their child's malignancy, despite having been informed initially that the treatment was palliative. Thus, many parents seem to derive hope and comfort from having their child continue to receive some active treatment. Studies are ongoing to determine parents' assessment of whether pRT did achieve what they had hoped for their child.
Lee BKY; Apkon D; Wolfe J; Marcus KJ
International Journal Of Radiation Oncology Biology Physics
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.ijrobp.2017.06.208" target="_blank" rel="noreferrer">10.1016/j.ijrobp.2017.06.208</a>
Guidance on forgoing life-sustaining medical treatment
Apparent Life Threatening Event/th [therapy]; Life-sustaining Medical Treatment; Medical Procedures; Practice Guideline; Article; Awareness; Caregiver; Child Abuse; Child Care; Clinical Decision Making; Comatose Patient; Consensus; Consultation; Critical Illness/th [therapy]; Death; Death By Neurologic Criteria; Developmental Disorder/th [therapy]; Disease Burden; Disease Course; Ethical Decision Making; Extremely Low Gestational Age; Family Decision Making; Family Stress; Foster Care; Gestational Age; Goal Attainment; Health Belief; High Risk Population; Human; Hydration; Imminent Death; Informed Consent; Intensive Care; Interpersonal Communication; Legal Aspect; Medical Ethics; Medical Expert; Medical Information; Medically Administered Nutrition And Hydration; Medical Specialist; Neglect; Neurologic Disease/di [diagnosis]; Nutrition; Oxygenation; Pain/th [therapy]; Palliative Therapy; Patient Care Planning; Pediatrician; Priority Journal; Prognosis; Quality Of Life; Resuscitation; Shared Decision Making; Social Support; Spiritual Care; Survival; Teamwork; Terminal Care; Tissue Perfusion; Uncertain Prognosis
Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the child leads to an assessment that forgoing life-sustaining medical treatment (LSMT) is ethically supportable or advisable. Parents are given wide latitude in decision-making concerning end-of-life care for their children in most situations. Collaborative decision-making around LSMT is improved by thorough communication among all stakeholders, including medical staff, the family, and the patient, when possible, throughout the evolving course of the patient's illness. Clear communication of overall goals of care is advised to promote agreed-on plans, including resuscitation status. Perceived disagreement among the team of professionals may be stressful to families. At the same time, understanding the range of professional opinions behind treatment recommendations is critical to informing family decision-making. Input from specialists in palliative care, ethics, pastoral care, and other disciplines enhances support for families and medical staff when decisions to forgo LSMT are being considered. Understanding specific applicability of institutional, regional, state, and national regulations related to forgoing LSMT is important to practice ethically within existing legal frameworks. This guidance represents an update of the 1994 statement from the American Academy of Pediatrics on forgoing LSMT.
Weise KL; Okun AL; Carter BS; Christian CW; Katz AL; Laventhal N; MacAuley RC; Moon MR; Opel DJ; Statter MB; Davies D; Dell ML; Diekema DS; Klipstein S; Elster N; Rivera F; Feudtner C; Boss RD; Hauer JM; Humphrey LM; Klick J; Linebarger JS; Parker S; Lord B; Imaizumi S; Guinn-Jones M; Flaherty EG; Gavril AR; Idzerda SM; Laskey A; Legano LA; Leventhal JM; Fortson BL; MacMillan H; Stedt E; Hurley TP
Pediatrics
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 class="aap-doi-text" href="https://doi.org/10.1542/peds.2017-1905" target="_blank" rel="noreferrer">10.1542/peds.2017-1905</a>
Palliative Care
Neoplasm; Palliative Therapy; 73-78-9 (lidocaine); 76-99-3 (methadone); 103-90-2 (paracetamol); 125-56-4 (methadone); 137-58-6 (lidocaine); 297-88-1 (methadone); 437-38-7 (fentanyl); 1095-90-5 (methadone); 8002-76-4 (opiate); 8008-60-4 (opiate); 12794-10-4 (benzodiazepine); 23142-53-2 (methadone); 24847-67-4 (lidocaine); 53663-61-9 (opiate); 56934-02-2 (lidocaine); 60142-96-3 (gabapentin); Acute Stress Disorder; Alcohol Consumption; Anticonvulsive Agent; Appetite; Benzodiazepine; Corticosteroid; Distress Syndrome; Dyspnea; Fentanyl; Gabapentin; Hair Loss; Health Care Personnel; Health Care System; Hospital; Human; Intensive Care Unit; Lidocaine; Major Depression; Medical Staff; Methadone; Mortality; Nausea And Vomiting; Obesity; Opiate; Paracetamol; Paralysis; Patient Care Planning; Priority Journal; Prostaglandin/ec [endogenous Compound]; Quality Of Life; Tracheostomy
Cancer is a leading cause of death in adolescents and young adults (AYAs) Wiener et al. (Pediatr Blood Cancer 60(5):715-718, 2013). Though most AYAs will survive, cancer will become incurable in 10-40 % Schrijvers and Meijnder (Cancer Treat Rev 33(7):616-621, 2007). Although the general philosophies of palliative care apply to AYAs, developmental considerations are unique to this group (Ferrari et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4850-4857, 2010); Wein et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4819-4824, 2010). The interaction of psychosocial, emotional, physical, and existential issues is essential to consider (Wein et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4819-4824, 2010). The gaps in care experienced on both sides of the healthcare system between pediatric and adult medicine can be particularly impactful when delivering palliative care. The benefit of a multidisciplinary palliative care approach is widely appreciated as is the need to begin the process early in order to develop a trusting relationship (Wiener et al. Pediatr Blood Cancer 60(5):715-718, 2013; Baker et al. Pediatr Clin N Am 55(1):223-250, 2008; Ferris et al. J Clin Oncol Off J Am Soc Clin Oncol 27(18):3052-3058). Honest communication which supports autonomy is essential in discussions of their goals, worries, risks versus benefits of treatment, and advanced care planning (Clark and Fasciano Am J Hosp Palliat Care 32(1):101-111, 2015; Christenson et al. J Pediatr Health Care Off Publ Natl Assoc Pediatr Nurse Assoc Pract 24(5):286-291, 2010; Linebarger et al. Pediatr Clin N Am 61(4):785-796, 2014).
Wasilewski-Masker K; Howk T; Connelly E; Postovsky S; Brill P; Wrammert KC; Pillai R
Pediatric Oncology
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/10.1007/978-3-319-33679-4_31" target="_blank" rel="noreferrer">10.1007/978-3-319-33679-4_31</a>
Repeal of the affordable care act will negatively impact children at end of life
Child Health Care; Health Care Policy; Hospice Care; Child; Health Care Cost; Human; Medicaid; Priority Journal; Quality Of Life; Review; United States
Keim-Malpass J; Lindley LC
Pediatrics
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).
10.1542/peds.2017-1134
Late Effects of Treatment and Palliative Care
Central Nervous System Tumor; Palliative Therapy; 59-05-2 (methotrexate); 69-74-9 (cytarabine); 147-94-4 (cytarabine); 154-93-8 (carmustine); 7413-34-5 (methotrexate); 15475-56-6 (methotrexate); 15663-27-1 (cisplatin); 26035-31-4 (cisplatin); 96081-74-2 (cisplatin); Advance Care Planning; Appetite Disorder; Bone Density; Brain Tumor; Carmustine; Childhood Cancer Survivor; Cisplatin; Constipation; Corticosteroid; Cytarabine; Diarrhea; Dyspnea; Endocrine Disease; Fatigue; Genetic Polymorphism; Health Care Quality; Human; Incidence; Medical Decision Making; Medulloblastoma; Methotrexate; Morbidity; Mortality Rate; Nausea And Vomiting; Neuroectoderm Tumor; Neuropathic Pain; Neuropsychological Test; Pain Assessment; Patient Care; Phase 1 Clinical Trial (topic); Priority Journal; Psychosocial Disorder; Quality Of Life; Questionnaire; Radiation Injury; Respiration Depression; Seizure; Signal Transduction; Spasticity
Identifying late effects of treatment and integrating palliative care when appropriate are increasingly recognized as important elements of childhood tumor management. Patients with CNS tumors are at a high risk for mortality, and survivors have high morbidity rates related to the late effects of treatment. While intensified therapy has improved average 5-year survival in patients with pediatric brain tumors to 73 % (Ostrom et al. 2014) from less than 60 % in 1975-1979 (Linabery and Ross 2008), it has also increased the long-term consequences. Survivors may develop a spectrum of late effects ranging from subtle memory loss and cosmetic anomalies to severe neurological disabilities and recurrent neoplasms. While seemingly quite different, both palliative and late-effects care focus on improving quality of life for patients and need to be integrated into the overall care plan.
Chang E; Goldsby R; Mueller S; Banerjee A
Pediatric Oncology
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).
10.1007/978-3-319-30789-3_17
How holistic nursing can enhance the quality of life of children with cystic fibrosis
Adolescent; Child Health; Cystic Fibrosis; Cystic Fibrosis/ Nursing/psychology; Family/psychology; Female; Holistic Nursing/ Methods; Humans; Life-limiting Illness; Paediatrics; Quality Of Life; Respiratory System; Siblings/psychology; Well-being
Cystic fibrosis (CF) is one of the most common life-limiting genetic conditions. Ellen Bolton (not her real name) is a teenager with one of the rarer presentations of CF. This case study explores the experiences of Ellen and her family. It discusses the effects of CF on the patient and her family, and how it affects their quality of life (QoL) and well-being.
Tointon K; Hunt J
Nursing Children And Young People
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/10.7748/ncyp.2016.e753" target="_blank" rel="noreferrer"><span>http://dx.doi.org/</span><span>10.7748</span><span>/</span><span>ncyp</span><span>.</span><span>2016</span><span>.</span><span>e753</span></a>
Prioritisation of future research topics in paediatric palliative care in Ireland: a Delphi study
Palliative Care; Pediatrics; Research; Children; Databases Factual; Delphi Study; Delphi Technique; Health Services Needs And Demand; Hospice Care; Humans; Ireland; Life-limiting Conditions; Parents; Quality Of Life; Research Priorities; Siblings; Terminal Care
This paper reports the findings from a Delphi Study undertaken to identify the research priorities in children's palliative care in Ireland. Palliative care for children is a small and highly specialised field of healthcare that focuses on improving the quality of life of children living with, or dying from, a life-limiting condition. Ideally, support for children requiring palliative care begins at the time of diagnosis, which for many children with life-limiting conditions can be from birth. There is a notable overlap between the needs of children requiring palliative care and those with disabilities and other complex care needs, resulting in care being provided by a range of voluntary and statutory agencies. As a new specialty, there is a need to develop an evidence-based approach to providing children's palliative care. In order to do this in a systematic way, identification of the research priorities in children's palliative care within Ireland is required.
Quinn C; McCarthy S; Devins M; O'Reilly M; Twomey M; Ling J
International Journal Of Palliative Nursing
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/10.12968/ijpn.2017.23.2.88" target="_blank" rel="noreferrer">10.12968/ijpn.2017.23.2.88</a>
Promoting An Ethic Of Engagement In Pediatric Palliative Care Research
Research; Humans; Palliative Care/methods; Patient Participation/methods; Pediatric Nursing/methods; Quality Of Life
BACKGROUND: This paper defends the ethical and empirical significance of direct engagement with terminally ill children and adolescents in PPC research on health-related quality of life. Clinical trials and other forms of health research have resulted in tremendous progress for improving clinical outcomes among children and adolescents diagnosed with a life-threatening illness. Less attention has been paid, however, to engaging this patient population directly in studies aimed at optimizing health-related quality of life in PPC. Though not restricted to care at the end of life, PPC--and by extension PPC research--is in part dependent on recognizing the social complexities of death and dying and where health-related quality of life is a fundamental element. To explore these complexities in depth requires partnership with terminally ill children and adolescents, and acknowledgement of their active social and moral agency in research. DISCUSSION: Principles of pediatric research ethics, theoretical tenets of the "new sociology of the child(hood)," and human rights codified in the United Nations Convention on the Rights of the Child (UNCRC) underpin the position that a more engagement-centered approach is needed in PPC research. The ethics, sociologies and human rights of engagement will each be discussed as they relate to research with terminally ill children and adolescents in PPC. Qualitative method(ologies) presented in this paper, such as deliberative stakeholder consultations and phenomenology of practice can serve as meaningful vehicles for achieving i) participation among terminally ill children and adolescents; ii) evidence-bases for PPC best practices; and iii) fulfillment of research ethics principles. CONCLUSION: PPC research based on direct engagement with PPC patients better reflects their unique expertise and social epistemologies of terminal illness. Such an approach to research would strengthen both the ethical and methodological soundness of HRQoL inquiry in PPC.
Rahimzadeh V; Bartlett G; Longo C; Crimi L; Macdonald ME; Jabado N; Ells C
Bmc Palliative Care
2015
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10.1186/s12904-015-0048-5
A Pilot Study Of The Effectiveness Of Home Teleconsultations In Paediatric Palliative Care
Caregivers/px [psychology]; Palliative Care/mt [methods]; Pediatrics/mt [methods]; Quality Of Life; Remote Consultation/ut [utilization]; Adult; Caregivers; Cohort Studies; Female; Health Services Accessibility; Humans; Male; Middle Aged; Outcome And Process Assessment (health Care); Palliative Care; Palliative Care/st [standards]; Patient Satisfaction; Pediatrics/st [standards]; Pilot Projects; Prospective Studies; Referral And Consultation; Rural Population
We conducted a pilot study to investigate the effectiveness of a home telehealth service for paediatric palliative care consultations. Over a 10 week period, 14 of the 17 caregivers approached to be part of the study agreed to participate. Families were allocated, non-randomly, to a control group (usual care) or an intervention group (usual care with the addition of home telehealth consultations). The primary outcome measure was quality-of-life score. Caregivers were surveyed for up to 99 days following recruitment. A descriptive analysis of the quality-of-life data showed no differences between caregivers in the two groups. However, important lessons were learnt regarding factors which influence the success of studies in this population group, and the domains of caregiver quality-of-life that warrant intervention. Palliative care is complex, and multiple interventions and supports are required if care is to be managed at home. Home telehealth consultations are a feasible and acceptable means of facilitating a palliative care consultation which can reduce the burden on families at a distressing time.
Bradford N; Young J; Armfield NR; Bensink ME; Pedersen LA; Herbert A; Smith AC
Journal Of Telemedicine & Telecare
2012
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10.1258/jtt.2012.gth103
The Needs Of Children With Life-limiting Conditions: A Healthcare-provider-based Model
Attitude Of Health Personnel; Child; Child Advocacy; Cluster Analysis; Decision Making; Family/psychology; Feasibility Studies; Health Services Accessibility/organization & Administration; Health Services Needs And Demand/organization & Administration; Humans; Medical Futility; Models Organizational; New York; Pain/prevention & Control; Patient Care Team/organization & Administration; Patient-centered Care/organization & Administration; Pediatrics/organization & Administration; Psychology Child; Qualitative Research; Quality Assurance Health Care; Quality Of Life; Right To Die; Spirituality; Terminal Care/organization & Administration
Pediatric hospice and palliative care has progressed in recent years with the development of new programs and models of care. Missing from the empirical literature, however is a model of the needs of children. The purpose of the present study was to develop an empirically based conceptual model of the needs of children with life-limiting conditions. Recognizing the value of both qualitative and quantitative data, concept mapping methodology was selected as an effective way to obtain data that reflected both the "big picture" and subtleties of pediatric end-of-life needs. The seven-cluster concept map appeared best in terms of both interpretability and parsimony. This model includes the following clusters of needs: 1) pain, 2) decision making, 3) medical system access and quality, 4) dignity and respect, 5) family-oriented care, 6) spirituality, and 7) psychosocial issues. We believe that the development of a comprehensive model of the needs of such children is a step toward concrete, measurable, and effective support for children and their families.
Donnelly James P; Huff Susan M; Lindsey Michael L; McMahon Kathy A; Schumacher JDonald
The American Journal Of Hospice & Palliative Care
2005
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).
10.1177/104990910502200406
Problems And Hopes Perceived By Mothers, Fathers And Physicians Of Children Receiving Palliative Care
Hope; Palliative Therapy; Physician; Problem Solving; Psychology; Adolescent; Child; Decision Making; Father; Female; Human; Human Relation; Infant; Male; Mother; Newborn; Preschool Child; Quality Of Life; Young Adult
BACKGROUND: The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child. OBJECTIVE: (i) Describe the problems and hopes reported by mothers, fathers and physicians of children receiving palliative care; (ii) examine the observed concordance between participants; (iii) examine parental perceived agreement; and (iv) examine whether parents who identified specific problems also specified corresponding hopes, or whether the problems were left 'hopeless'. METHOD: Seventy-one parents and 43 physicians were asked to report problems and hopes and perceived agreement for 50 children receiving palliative care. Problems and hopes were classified into eight domains. Observed concordance was calculated between parents and between each parent and the physicians. RESULTS: The most common problem domains were physical body (88%), quality of life (74%) and medical knowledge (48%). The most common hope domains were quality of life (88%), suffering (76%) and physical body (39%). Overall parental dyads demonstrated a high percentage of concordance (82%) regarding reported problem domains and a lower percentage of concordance on hopes (65%). Concordance between parents and physicians regarding specific children was lower on problem (65-66%) and hope domains (59-63%). Respondents who identified problems regarding a child's quality of life or suffering were likely to also report corresponding hopes in these domains (93 and 82%, respectively). CONCLUSION: Asking parents and physicians to talk about problems and hopes may provide a straightforward means to improve the quality of shared decision making for critically ill children.
Hill D L; Miller V A; Hexem K R; Carroll K W; Faerber J A; Kang T; Feudtner C
Health Expectations
2015
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).
10.1111/hex.12078
End-of-life Decisions For Extremely Preterm Infants - A Matter Of Language, Gender And Education?
Education; Ethical Decision Making; Gender; Language; Prematurity; Prematurity/dm [disease Management]; Terminal Care; Artificial Ventilation; Editorial; Education; Female; France; Gender; Germany; Human; Human Experiment; Infant; Italy; Language; Male; Physician Attitude; Priority Journal; Quality Of Life; Shared Decision-making; Switzerland
Buhrer C
Acta Paediatrica
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).
10.1111/apa.13717
Palliative Care After Neonatal Intensive Care: Contributions Of Leonetti Law And Remaining Challenges
Newborn Intensive Care; Palliative Therapy; Patient Right; Terminal Care; Artificial Feeding; Brain Damage; Climate; Clinical Practice; Clinical Study; Decision Making; Drug Withdrawal; Dying; Emotion; Ethics; Health Promotion; Human; Human Dignity; Hydration; Life Sustaining Treatment; Medical Decision Making; Medical Ethics; Medical Practice; Neonatology; Newborn; Palliative Therapy; Perinatal Care; Perinatal Nursing; Quality Of Life; Short Survey; Survival; Terminal Care; Treatment Withdrawal
Kuhn P; Dillenseger L; Cojean N; Escande B; Zores C; Astruc D
Archives De Pediatrie
2017
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10.1016/j.arcped.2016.11.012
Paediatric Palliative Care And Intellectual Disability-a Unique Context
Family-centred Care; Intellectual Disability; Paediatrics; Palliative Care; Quality Of Life
BACKGROUND: Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. METHOD: This study describes the complex care of children with life-limiting conditions and intellectual disability by means of a literature synthesis and commentary with "best-practice" guide. RESULTS: As few articles concerning children with intellectual disability and palliative care needs were identified by formal systematic review, our expert consensus group has drawn from the paediatric palliative, oncology and adult intellectual disability literature to highlight common clinical challenges encountered in the day-to-day care of children with intellectual disability and life-limiting conditions. CONCLUSION: A longitudinal child- and family-centred approach is key to ensuring best-practice care for families of children with life-limiting conditions and intellectual disability. As highlighted by the great absence of literature addressing this important patient population, further research in this area is urgently required.
Duc J K; Herbert A; Heussler H S
Journal Of Applied Research In Intellectual Disabilities
2017
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<a href="https://doi.org/10.1111/jar.12389" target="_blank" rel="noreferrer">10.1111/jar.12389</a>
Families Are Not The Barrier: Evaluating Attitudes Toward Early Integration Of Palliative Care In Pediatric Hematopoietic Stem Cell Transplant
Family; Hematopoietic Stem Cell; Palliative Therapy; Anxiety; Attention; Child; Constipation; Diarrhea; Female; Graft Recipient; Human; Loss Of Appetite; Major Clinical Study; Male; Nausea; Pain; Parental Attitude; Quality Of Life; School Child; Speech; Symptom
Background: The benefits of early integration of palliative care (PC) in oncology have been well established yet, there remain significant barriers to PC integration, especially in the setting of pediatric hematopoietic stem cell transplant (HSCT). HSCT patients are prone to a great degree of treatment related toxicity and are at high risk for morbidity and mortality and, while ideally suited to benefit, inherent factors in this cure oriented field preclude the integration of PC services. Most notably, family receptivity to PC is often perceived as a barrier in HSCT yet there is no data on family attitudes toward PC in this setting. Objectives: This study aimed to evaluate perceived symptom burden in the first month of pediatric HSCT, as well as patient and parent attitudes toward early PC integration in pediatric HSCT. Design/Method: After IRB approval, development and pre-testing, novel survey tools were administered to HSCT patients and parents. Eligibility criteria included parent of an HSCT recipient < age 10 or patient/parent dyad for patients aged10 years or older, time from HSCT >1 month and <1 year, English-speaking, and consent/assent. Data was assessed for trends in response content frequencies, percentages and parent/child concordance. Results: 81 total participants were enrolled, including 60 parents and 21 patients. Analysis revealed high levels of perceived symptom related suffering in the first month of HSCT with suffering from: nausea 98.3%, loss of appetite 93.3%, pain 90%, diarrhea 88.3%, depression 75%, anxiety 70%, and constipation 41.7%. 85.7% of patients and 73.4% parents expressed that a great deal or a lot of attention should be paid to quality of life from the start of HSCT. The majority of patient and parent respondents (52.4/50%) indicated they would likely want to meet with PC early in HSCT and very few reported definite opposition (0% children, 3.3% parents). Conclusion: Pediatric HSCT patients experience a high degree of symptom related suffering, perceive quality of life as a high priority, and are largely in favor of early PC involvement. Our findings suggest that family receptivity should not be a barrier to early PC in pediatric HSCT and that aggressive cure directed therapy can and should be accompanied by aggressive quality of life directed care through early PC integration.
Levine D; Mandrell B; Sykes A; Baker J
Pediatric Blood And Cancer
2017
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10.1002/pbc.26591
Trending Longitudinal Agreement Between Parent And Child Perceptions Of Quality Of Life For Pediatric Palliative Care Patients
Patient Reported Outcomes; Pediatric Palliative Care; Quality Of Life
Pediatric palliative care studies often rely on proxy-reported instead of direct child-reported quality of life metrics. The purpose of this study was to longitudinally evaluate quality of life for pediatric patients receiving palliative care consultations and to compare patient-reported quality of life with parent perception of the child's quality of life across wellness domains. The 23-item PedsQL V4.0 Measurement Model was utilized for ten child and parent dyads at time of initial palliative care consultation, Month 6, and Month 12 to assess for physical, emotional, social, and cognitive dimensions of quality of life as reported independently by the child and by the parent for the child. Findings were analyzed using Bland-Altman plots to compare observed differences to limits of agreement. This study revealed overall consistency between parent- and child-reported quality of life across domains. Physical health was noted to be in closest agreement. At the time of initial palliative care consult, children collectively scored their social quality of life higher than parental perception of the child's social quality of life; whereas, emotional and cognitive quality of life domains were scored lower by children than by the parental report. At the one year survey time point, the physical, emotional, and social domains trended toward more positive patient perception than proxy perception with congruence between quality of life scores for the cognitive domain. Findings reveal the importance of eliciting a child report in addition to a parent report when measuring and longitudinally trending perceptions on quality of life.
Weaver M; Darnall C; Bace S; Vail C; Macfadyen A; Wichman C
Children (basel)
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).
10.3390/children4080065
Pharmacological Interventions For Pain In Children And Adolescents With Life-limiting Conditions
Drug Efficacy; Neuropathic Pain/dt [drug Therapy]; Nociceptive Pain/dt [drug Therapy]; 52-26-6 (morphine); 57-27-2 (morphine); 73-78-9 (lidocaine); 76-42-6 (oxycodone); 76-57-3 (codeine); 76-99-3 (methadone); 94-09-7 (benzocaine); 94-24-6 (tetracaine); 103-90-2 (paracetamol); 124-90-3 (oxycodone); 125-56-4 (methadone); 133-16-4 (chloroprocaine); 136-47-0 (tetracaine); 137-58-6 (lidocaine); 297-88-1 (methadone); 437-38-7 (fentanyl); 1095-90-5 (methadone); 1134-47-0 (baclofen); 1333-08-0 (benzocaine); 2180-92-9 (bupivacaine); 3858-89-7 (chloroprocaine); 15307-79-6 (diclofenac); 15307-86-5 (diclofenac); 15687-27-1 (ibuprofen); 18010-40-7 (bupivacaine); 23142-53-2 (methadone); 24847-67-4 (lidocaine); 31121-93-4 (ibuprofen); 38396-39-3 (bupivacaine); 40391-99-9 (pamidronic Acid); 52485-79-7 (buprenorphine); 53152-21-9 (buprenorphine); 55750-21-5 (bupivacaine); 56934-02-2 (lidocaine); 57248-88-1 (pamidronic Acid); 66376-36-1 (alendronic Acid); 74103-06-3 (ketorolac); 79261-49-7 (ibuprofen); 527688-20-6 (ibuprofen); Alendronic Acid/ct [clinical Trial]; Alendronic Acid/dt [drug Therapy]; Analgesia; Baclofen/ct [clinical Trial]; Baclofen/dt [drug Therapy]; Benzocaine/ct [clinical Trial]; Benzocaine/dt [drug Therapy]; Bupivacaine/ct [clinical Trial]; Bupivacaine/dt [drug Therapy]; Buprenorphine/ct [clinical Trial]; Buprenorphine/dt [drug Therapy]; Cerebral Palsy; Chloroprocaine/ct [clinical Trial]; Chloroprocaine/dt [drug Therapy]; Codeine/ct [clinical Trial]; Codeine/dt [drug Therapy]; Diclofenac/ct [clinical Trial]; Diclofenac/dt [drug Therapy]; Drug Clearance; Drug Safety; Fentanyl/ct [clinical Trial]; Fentanyl/dt [drug Therapy]; Functional Status; Human; Ibuprofen/ct [clinical Trial]; Ibuprofen/dt [drug Therapy]; Ketorolac/ct [clinical Trial]; Ketorolac/dt [drug Therapy]; Length Of Stay; Lidocaine/ct [clinical Trial]; Lidocaine/dt [drug Therapy]; Methadone/ct [clinical Trial]; Methadone/dt [drug Therapy]; Morphine/ct [clinical Trial]; Morphine/dt [drug Therapy]; Neuropathic Pain/dt [drug Therapy]; Nociceptive Pain/dt [drug Therapy]; Osteogenesis Imperfecta; Oxycodone/ct [clinical Trial]; Oxycodone/dt [drug Therapy]; Pain Intensity; Pain Severity; Pamidronic Acid/ct [clinical Trial]; Pamidronic Acid/dt [drug Therapy]; Paracetamol/ct [clinical Trial]; Paracetamol/dt [drug Therapy]; Priority Journal; Psychological Well-being; Quality Of Life; Randomized Controlled Trial (topic); Review; Risk Benefit Analysis; Tetracaine/ct [clinical Trial]; Tetracaine/dt [drug Therapy]; Treatment Outcome
Background: Pain is one of the most common symptoms in children and young people (CYP) with life-limiting conditions (LLCs) which include a wide range of diagnoses including cancer. The current literature indicates that pain is not well managed, however the evidence base to guide clinicians is limited. There is a clear need for evidence from a systematic review to inform prescribing. Objectives: To evaluate the evidence on the effectiveness of different pharmacological interventions used for pain in CYP with LLCs. Search methods: The following electronic databases were searched up to December 2014: CENTRAL (in the Cochrane Library), MEDLINE, EMBASE, PsycINFO and CINAHL. In addition, we searched conference proceedings and reference lists of included studies. For completeness, we also contacted experts in the field. No language restrictions were applied. Selection criteria: Randomised controlled trials (RCTs), quasi-randomised studies and other studies that included a clearly defined comparator group were included. The studies investigated pharmacological treatments for pain associated with LLCs in CYP. The treatment included those specifically developed to treat pain and those that acted as an adjuvant, where the treatment was not primarily developed to treat pain but has pain relieving properties. The LLC was identified by its inclusion in the Richard Hain Directory of LLCs. Data collection and analysis: Citations were screened by five review authors. Data were extracted by one review author and checked by a second. Two review authors assessed the risk of bias of included studies. A sufficient number of studies using homogeneous outcomes was not identified so a meta-analysis was not possible. Main results: We identified 24,704 citations from our database search. Nine trials with 379 participants fulfilled our inclusion criteria. Participants had cerebral palsy (CP) in five of the studies and osteogenesis imperfecta (OI) in the other four. Participants across the trials ranged in age from 2 to 19 years. All studies, apart from one cross-over trial, were parallel designed RCTs. Three of the trials on CP evaluated intrathecal baclofen (ITB) and two botulinum toxin A (BoNT-A). All of the OI trials evaluated the use of bisphosphonates (two alendronate and one pamidronate). No trials were identified that evaluated a commonly used analgesic in this patient group. Pain was a secondary outcome in five of the eight identified studies. Overall the quality of the trials was mixed. Only one study involved over 100 participants. For the two ITB studies for pain in CP, in the same study population but assessed at different time points in their disease, both found an effect on pain favouring the intervention compared to the control group (standard care or placebo) (mean difference (MD) 4.20, 95% confidence interval (CI) 2.15 to 6.25; MD 26.60, 95% CI 2.61 to 50.59, respectively). In these studies most of the adverse events related to the procedure or device for administration rather than the drug, such as swelling at the pump site. In one trial there were also eight serious adverse effects; these included difficulty swallowing and an epileptic seizure. The trial did not state if these occurred in the intervention group. At follow-up in both BoNT-A trials there was no evidence of a difference in pain between the trial arms among CP participants. The adverse events in the BoNT-A trials mostly involved those who received the intervention drug and involved seizures. Gastrointestinal problems were the most frequent adverse event in those who received alendronate. The trial investigating pamidronate found no evidence of a difference in pain compared to the control group. No adverse events were reported in this trial. Authors' conclusions: Published, controlled evidence on the pharmacological interventions for pain in CYP with LLCs is limited. The evidence that is currently available evaluated pain largely as a secondary outcome and the drugs used were all adjuvants and not always commonly used in general paediatric palliative care for p
Beecham E; Candy B; Howard R; McCulloch R; Laddie J; Rees H; Vickerstaff V; Bluebond-Langner M; Jones L
Cochrane Database Of Systematic Reviews
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1002/14651858.CD010750.pub2
Siblings Of Children With Life‐limiting Conditions: Psychological Adjustment And Sibling Relationships
Behaviour Problems; Impact On Siblings; Life-limiting; Quality Of Life
Background This study explored psychological adjustment and sibling relationships of siblings of children with life‐limiting conditions (LLCs), expanding on previous research by defining LLCs using a systematic classification of these conditions. Methods Thirty‐nine siblings participated, aged 3–16 years. Parents completed measures of siblings' emotional and behavioural difficulties, quality of life, sibling relationships and impact on families and siblings. Sibling and family adjustment and relationships were compared with population norms, where available, and to a matched comparison group of siblings of children with autistic spectrum disorder (ASD), as a comparable ‘high risk’ group. Results LLC siblings presented significantly higher levels of emotional and behavioural difficulties, and lower quality of life than population norms. Their difficulties were at levels comparable to siblings of children with ASD. A wider impact on the family was confirmed. Family socio‐economic position, time since diagnosis, employment and accessing hospice care were factors associated with better psychological adjustment. Conclusions Using a systematic classification of LLCs, the study supported earlier findings of increased levels of psychological difficulties in siblings of children with a LLC. The evidence is (i) highlighting the need to provide support to these siblings and their families, and (ii) that intervention approaches could be drawn from the ASD field. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
Fullerton JM; Totsika V; Hain R; Hastings RP
Child: Care, Health And Development
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).
10.1111/cch.12421
Aspects Of Palliative Care In Child Neurology
Neurology; Palliative Therapy; Bereavement Counseling; Central Nervous System Tumor; Child; Child Care; Chromosome Aberration; Controlled Study; Coordination; Diagnosis; Family Study; Germany; Human; Human Experiment; Metabolic Disorder; Neurologic Disease; Only Child; Pain; Palliative Care; Quality Of Life; Spiritual Care; Terminal Care
Pediatric palliative medicine/care (PPC) is an approach to care that focuses on improving the quality of life of children facing a life limiting condition (LLC). LLCs are classified by the ACT (Association for children with life-threatening or terminal conditions and their families) concept in four groups: (i) conditions for which treatment may be feasible but can fail (ii) conditions in which premature deaths is inevitable but where long periods of participation in normal activities may be feasible (iii) progressive conditions without curative options where treatment is exclusively palliative (iv) irreversible but non-progressive conditions causing likelihood of premature death through complications. Neurological LLCs in children are represented in all four groups according to the ACT concept. Furthermore neuropediatric LLCs comprise up to 70% of the diagnoses in PPC subject to the criteria of a neurological disease entity (inclusion of CNS tumors, chromosomal anomalies, metabolic disorders etc.). The clinical course in neuropediatric LLCs differs from the course of oncological LLCs. Therefore the needs of the affected children, their families and their requirements of the PPC providers are different. In Germany PPC is often recognized solely as an end of life care. Typically, PPC accomplishes the objective of improving quality of life through symptom management e.g., pain control, coordination of care, communication and by providing psychosocial and spiritual support to the child and the family also in bereavement counseling. Within in the last years three different levels of specialized PPC have been established in Germany.
Nolte-Buchholtz S; Von Der Hagen M
Neuropediatrics
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: 10.1055/s-0036-1583743
Family-oriented Palliative Care: Parents' Perspective And Experience
Family Study; Palliative Therapy; Brain Damage; Child; Chromosome Disorder; Chromosome Disorders; Complication; Controlled Study; Dyspnea; Gene Deletion; Hospice; Hospital; Human; Length Of Stay; Life Expectancy; Medical Service; Metabolic Disorder; Neuromuscular Disease; Only Child; Pain; Palliative Care; Quality Of Life; Seizure; Spasticity; Spiritual Care; Symptom
Palliative care is needed for children with neurodegenerative and progressive neuromuscular diseases, inborn genetic (e.g., chromosomal disorders, deletion syndromes) or metabolic disorders, as well as for children with early brain lesions which can decrease life-expectancy due to complications. Care for children with life-shortening diseases is a major challenge for parents and the whole family. A vast majority of families prefer to live at home with their severely sick child, and they also want to avoid admissions to hospital and stay at their familiar environment for the final period of life. To cope with all these demands, many families need a lot of support. By means of early integration of palliative perspective and care support can be adapted to the needs of the child and the family. Many children are living at home with their parents for many years. In many cases, quality of life and a stable familiar environment can be assured only by substantial external assistance. Support by specialized palliative care teams (SAPV), hospices and hospice services is able to unburden families. Important tasks are continuous and 24-hour medical services for symptom control (regarding e.g., pain, dyspnea, seizures, spasticity) as well as psychological, emotional, social and spiritual care for patients and all other family members.
Pietz J
Neuropediatrics
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: 10.1055/s-0036-1583746
Listening To Parents: The Role Of Symptom Perception In Pediatric Palliative Home Care
Perception; Procedures; Adult; Cross Sectional Study; Death; Dyspnea/di [diagnosis]; Female; Home Care; Human; Male; Pain/di [diagnosis]; Palliative Therapy; Parent; Pediatrics; Psychology; Quality Of Life; Questionnaire; Retrospective Study; Standards; Symptom Assessment
RESULTS: Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R 2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0-10) and rated the child's death as highly peaceful (median 9). Significance of the results: The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care. OBJECTIVE: This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children. METHODS: In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase).
Vollenbroich R; Borasio GD; Duroux A; Grasser M; Brandstatter M; Fuhrer M
Palliative & Supportive Care
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).
10.1017/S1478951515000462
Mechanical Ventilation In Children With Life-limiting Conditions
Artificial Ventilation; Adult; Cancer Epidemiology; Cerebral Palsy; Child; Chromosome Disorder; Cognitive Defect; Controlled Study; Cross-sectional Studies; Cross-sectional Study; Death; Follow Up; Human; Lung Disease; Major Clinical Study; Mucopolysaccharidosis; Neuromuscular Disease; Only Child; Palliative Care; Palliative Therapy; Quality Of Life; Respiration Artificial; Respiratory Insufficiency; Spain; University Hospital; Ventilators Mechanical; Young Adult
Background: Respiratory insufficiency in children with life-limiting and life-threatening conditions is common, it has a lasting impact, yet there is a paucity of evidence to guide clinicians in its management with home support. Objectives: Our aim was to review palliative indication of home mechanical ventilation (HMV) in Southwestern Spain. Methods: Descriptive cross-sectional study including pediatric patients (aged 0 to 18 years) who were being taken care by the HMV program at the University Hospital Virgen del Rocio in Seville between 2000 and 2015. Results: A total of 78 patients were analyzed, 22 on invasive ventilation (10 with 24 hours/day) and 56 on no invasive ventilation. Duration of HMV varies from 2 days to 15 years. According to standards for pediatric palliative care in Europe, 12 patients suffered from life-threatening illness, (group 1; 4 cancer, 8 no progressive lung disease), 17 had conditions in which premature death is inevitable (group 2; 3 mucopolysaccharidosis, 14 malformative syndrome or chromosomopathy), 38 had progressive conditions without curative options (group 3; 30 neuromuscular diseases, 8 neurological progressive disease of unknown origin), 7 had irreversible but not progressive conditions (group 4; cerebral palsy). When HMV was started 17 patients had severe cognitive impairment, and HMV was indicated to improve quality of life by reducing hospital visits. During follow up, 3 patients died and 3 were weaned from HMV (group 1). Only 4 patients were included in a pediatric palliative care program. Conclusions: Up to 95% of patients with HMV can benefit from palliative care. HMV in children with chronic conditions aims to ameliorate their quality of life, but may pose ethical dilemmas.
Gaboli M; Pecellin ID; Garrido MM; Cantero EQ; Carro CC; Rodriguez LMR; Valencia JPG
European Respiratory Journal
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).
10.1183/13993003.congress-2016.OA248