Hospice referral practices for children with cancer: A survey of pediatric oncologists

Department of Hematology Oncology, University of Alabama, Birmingham, AL, USA.
Journal of Clinical Oncology (Impact Factor: 18.43). 04/2006; 24(7):1099-104. DOI: 10.1200/JCO.2005.02.6591
Source: PubMed


To examine hospice referral patterns among pediatric oncologists and identify barriers to referral.
A self-administered survey was sent to 1,200 pediatric oncologists who are members of Children's Oncology Group. Two electronic mail messages followed by traditional mail surveys were sent to eligible physicians. Pediatricians and pediatric oncologists developed, pretested, and modified the survey for item clarification.
Of 944 eligible pediatric oncologists surveyed, 632 replied, yielding a response rate of 67%. Most respondents reported having access to palliative care programs (65%) and hospice services (85%), but few (27%) had access to inpatient hospice services. More respondents reported feeling comfortable managing end-of-life pain than psychological issues (86% v 67%, respectively). Many pediatric oncologists (62%) reported that half or more of their patients died in the hospital. In multivariate analysis, physicians with access to hospice that accepts patients receiving chemotherapy had more patients die at home than in hospital compared with physicians without access to such services (P = .007). The probability of hospice referral was positively associated with the presence of a hospice facility (P < .001) and with a larger size oncology group (P = .024). Only 2.5% of respondents referred patients at the time of relapse. Continued therapy was cited as the most common reason for not making a referral, and was significantly higher when hospice did not admit children receiving chemotherapy (P = .002).
Hospice referral for children with cancer is usually made late in the course of their disease and might improve if hospice admits patients who are actively receiving chemotherapy.

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    • "Recent reports [8-10] show that, despite WHO guidelines [11], referrals to palliative care are often made late in the trajectory of a life-limiting disease. This is true even in countries like the UK, where availability of palliative care for children is comparatively good [12-14]. Referral patterns remain less than ideal despite the availability of a number of scales designed to improve recognition of the need for palliative care [15-19], perhaps because they are all designed for adults. "
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    ABSTRACT: Background The introduction of paediatric palliative care and referral to specialised teams still occurs late in the illness trajectory of children with life-limiting diseases. The aim of this ongoing multipart study was to develop a screening instrument for paediatricians that would improve the timely identification of children who could benefit from a palliative care approach. Methods We used a qualitative study approach with semi-structured interviews (Part 1) and a focus group discussion (Part 2) to define the domains and items of the screening instrument. Seven international paediatric palliative care experts from the UK, France, USA, and Canada took part in face-to-face interviews, and eleven paediatric health professionals from the University Children’s Hospital, Zurich, participated in a subsequent focus group discussion. Results This preliminary phase of development and validation of the instrument revealed five domains relevant to identifying children with life-limiting diseases, who could benefit from palliative care: 1) trajectory of disease and impact on daily activities of the child; 2) expected outcome of disease-directed treatment and burden of treatment; 3) symptom and problem burden; 4) preferences of patient, parents or healthcare professional; and 5) estimated life expectancy. Where palliative care seems to be necessary, it would be introduced in a stepwise or graduated manner. Conclusions This study is a preliminary report of the development of an instrument to facilitate timely introduction of palliative care in the illness trajectory of a severely ill child. The instrument demonstrated early validity and was evaluated as being a valuable approach towards effective paediatric palliative care.
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    • "Children with leukemia and those with treatment-related complications are more likely to die in the hospital (Shah et al., 2011; Wolfe et al., 2008). However, children with cancer with a poor prognosis who are offered comprehensive hospice services (e.g., home delivery of chemotherapy and blood transfusions) are more likely to die in their homes (Bradshaw, Hinds, Lensing, Gattuso, & Razzouk, 2005; Fowler et al., 2006; Klopfenstein et al., 2001). "
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    ABSTRACT: To evaluate an end-of-life (EOL) program related to specific outcomes (i.e., number of hospitalizations and place of death) for children with brain tumors. From 1990 to 2005, a retrospective chart review was performed related to specified outcomes for 166 children with admission for pediatric brain tumors. Patients who received the EOL program were hospitalized less often (n = 114; chi-square = 5.001 with df = 1, p <.05) than patients who did not receive the program. An EOL program may improve symptom management and decrease required hospital admissions for children with brain tumors.
    Journal for Specialists in Pediatric Nursing 04/2013; 18(2):144-57. DOI:10.1111/jspn.12024 · 0.92 Impact Factor
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    • "Although not specifically written for children , the guidelines include pediatrics (newborns to young adults). However, despite the current standards, guidelines, and position statement, misconceptions regarding pediatric end-of-life care persist, particularly those that lead to a reluctance to refer children to palliative care services [18] [19] [20]. "
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    ABSTRACT: The medical practitioner in the community is in a unique position to assist children and their families from the time of diagnosis with a life-threatening condition through to the end of life. The purpose of this article is to inform medical practitioners who care for children with complex, chronic, and life-limiting conditions about pediatric palliative care in the community. It is intended as a guide to improve understanding about (1) the misconceptions and barriers surrounding the provision of care in the community for children with chronic, complex, and life-limiting conditions; (2) the availability of services for care in the community; (3) challenges concerning out-of hospital do-not-attempt-resuscitation orders for children; and (4) reimbursement issues that impact the provision of care.
    Pediatric Clinics of North America 11/2007; 54(5):813-27, xiii. DOI:10.1016/j.pcl.2007.06.002 · 2.12 Impact Factor
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