Pediatric Palliative Care Patients: A Prospective Multicenter Cohort Study

Feudtner, Chris; Kang, Tammy I.; Hexem, Kari R.; Friedrichsdorf, Stefan J.; Osenga, Kaci; Siden, Harold; Friebert, Sarah; Hays, Ross M.; Dussel, Verónica; Wolfe, Joanne

doi:10.1542/peds.2010-3225

Cited by 385 publications

(357 citation statements)

References 14 publications

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“…For example, 71% of oncologists reported that patient death was particularly challenging when the family was unprepared for it, and 81% reported that it was hard for them when the patient who died was in pain. Substantial evidence indicates that the early integration of palliative care can prepare patients, their families, and the health care team for the end of life [35][36][37][38][39][40] , and in the process, it can also reduce miscommunication between patients, caregivers, and physicians 35,36,[41][42][43] . According to the National Consensus Project for Quality Palliative Care 44 , palliative care is defined as "patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering.…”

Section: "Bad Death"mentioning

confidence: 99%

Experiences of Canadian Oncologists with Difficult Patient Deaths and Coping Strategies Used

et al. 2017

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Objectives We aimed to explore and identify what makes patient death more emotionally difficult for oncologists and how oncologists cope with patient death.Methods A convenience sample of 98 Canadian oncologists (50 men, 48 women) completed an online survey that included a demographics section and a section about patient death. ResultsMore than 80% of oncologists reported that patient age, long-term management of a patient, and unexpected disease outcomes contributed to difficult patient loss. Other factors included the doctor-patient relationship, identification with the patient, caregiver-related factors, oncologist-related factors, and "bad deaths." Oncologists reported varying strategies to cope with patient death. Most prevalent was peer support from colleagues, including nurses and other oncologists. Additional strategies included social support, exercise and meditation, faith, vacations, and use of alcohol and medications. ConclusionsOncologists listed a number of interpersonal and structural factors that make patient death challenging for them to cope with. Oncologists reported a number of coping strategies in responding to patient death, including peer support, particularly from nursing colleagues. No single intervention will be suitable for all oncologists, and institutions wishing to help their staff cope with the emotional difficulty of patient loss should offer a variety of interventions to maximize the likelihood of oncologist participation.

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Section: "Bad Death"mentioning

confidence: 99%

Experiences of Canadian Oncologists with Difficult Patient Deaths and Coping Strategies Used

et al. 2017

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“…Despite the variety of rare diagnoses comprising CCCs, this group of children frequently share a common set of underlying issues. 26 Broadly, these are categorized as neurologic issues (seizures, pain control, behavior/mood disorders), pulmonary issues (asthma, chronic lung disease, aspiration), gastrointestinal issues (gastrostomy tube, reflux, constipation), endocrine disturbances (adrenal insufficiency), and infectious issues (central line, catheter, or shunt infections). The likelihood of ADE visits related to vaccines was not significantly different between groups; this supports validity of our findings because most children should receive standard childhood vaccinations, which pose a low risk of ADEs.…”

Section: Discussionmentioning

confidence: 99%

Adverse Drug Event-Related Emergency Department Visits Associated With Complex Chronic Conditions

2014

Self Cite

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WHAT'S KNOWN ON THIS SUBJECT: Children who experience outpatient adverse drug events represent 0.5% of pediatric emergency department visits. The subset of children with complex chronic conditions often take multiple medications, but the incidence and severity of adverse drug events in these children is unknown. WHAT THIS STUDY ADDS:Children with complex chronic conditions have a higher risk of emergency department visits related to adverse drug events, compared with other children. The implicated drugs with the highest rates include psychotropic agents, antimicrobial agents, anticonvulsants, hormones/steroids, and analgesics. abstract BACKGROUND AND OBJECTIVES: Outpatient adverse drug events (ADEs) can result in serious outcomes requiring emergency department (ED) visits and hospitalizations. The incidence and severity of ADEs in children with complex chronic conditions (CCCs), who often take multiple medications, is unknown. We sought to describe the characteristics of ADE-related ED visits, including association with CCC status; determine the implicated medications; and determine if CCC status increased the risk of ADE-related admission. METHODS:Retrospective cohort study of ED visits by patients aged 0 to 18 years using a national sample. ADEs were identified by external cause of injury codes; cases with overdose, wrongful administration, self-harm, or diagnosis of malignancy were excluded. Multivariable logistic regression was used to test outcomes of having an ADE-related ED visit and of subsequent admission. All statistics accounted for the complex survey design. RESULTS:Of 144 million ED visits, 0.5% were associated with ADEs. Adjusting for age, gender, insurance type, day of week, and location of hospital, ADEs were associated with the presence of a CCC (odds ratio 4.76; 95% confidence interval: 4.45-5.10). The implicated medications differed significantly by CCC status. Adjusting for the same variables, ADEs were associated with subsequent inpatient admission (odds ratio 2.18; 95% confidence interval: 2.04-2.32) for all children; an interaction between ADE and CCC status was not significant.CONCLUSIONS: ED visits associated with ADEs were more likely to occur for children with CCCs, and the implicated drugs differed, but ADE-related admissions were not differentially affected by CCC status.

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“…Indeed, especially for patients who do not suffer from cancer, there is often uncertainty regarding whether the outcome of the illness episode will, in fact, be death. 27 Awareness of such uncertainty is important for all members of the health care team as well as the family. For many competent adult patients who request aid in dying, the requests are often motivated by a desire to be in control of the circumstances of death.…”

Section: How Can One Tell the Difference Between Treating Suffering Amentioning

confidence: 99%

Judging the Quality of Mercy: Drawing a Line Between Palliation and Euthanasia

Morrison¹,

Kang

2014

Pediatrics

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Clinicians frequently worry that medications used to treat pain and suffering at the end of life might also hasten death. Intentionally hastening death, or euthanasia, is neither legal nor ethically appropriate in children. In this article, we explore some of the historical and legal background regarding appropriate end-of-life care and outline what distinguishes it from euthanasia. Good principles include clarity of goals and assessments, titration of medications to effect, and open communication. When used appropriately, medications to treat symptoms should rarely hasten death significantly. Medications and interventions that are not justifiable are also discussed, as are the implications of palliative sedation and withholding fluids or nutrition. It is imperative that clinicians know how to justify and use such medications to adequately treat suffering at the end of life within a relevant clinical and legal framework. Pediatrics 2014;133:S31-S36

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Pediatric Palliative Care Patients: A Prospective Multicenter Cohort Study

Abstract: PPC teams currently serve a diverse cohort of children and young adults with life-threatening conditions. In contrast to the reported experience of adult-oriented palliative care teams, most PPC patients are alive for more than a year after initiating PPC.

Cited by 385 publications

References 14 publications

Experiences of Canadian Oncologists with Difficult Patient Deaths and Coping Strategies Used

Experiences of Canadian Oncologists with Difficult Patient Deaths and Coping Strategies Used

Adverse Drug Event-Related Emergency Department Visits Associated With Complex Chronic Conditions

Judging the Quality of Mercy: Drawing a Line Between Palliation and Euthanasia

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