Objectives
Describe the history, epidemiology, and role of
perinatal palliative care.
Examine the impact of perinatal palliative care on
neonatal outcomes at the University of
Minnesota.
Explore the potential benefits of perinatal palliative
care…
Objectives
Describe patterns of medical care provided to patients
with cystic fibrosis (CF) around the end of
life.
Explore the roles a pediatric palliative care
consultation service serves for patients with CF
who ultimately die from their…
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…
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…
CONTEXT: Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. OBJECTIVE: To describe the design and lessons…
Context. Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. Objective. To describe the design and lessons…
Background: The majority of children die in pediatric hospitals after a decision to withhold or withdraw life sustaining interventions. Tensions and conflicts at the end of life (EOL) are not rare in pediatric hospitals. Objective: To investigate how…
Background: The majority of children die in pediatric
hospitals after a decision to withhold or withdraw
life sustaining interventions. Tensions and conflicts
at the end of life (EOL) are not rare in pediatric
hospitals.
Objective: To investigate how…
Objectives: * Describe the logistics of using telemedicine through an outpatient Pediatric Palliative Clinic. * Describe the experience of using telemedicine from the perspective of the parent, nurse, and physician.
CONTEXT:
Difficult family conversations are a challenge for even the most seasoned clinicians. Teaching the skills of successful communication between providers, family members, and patients is a vital component of medical education. However,…
Objectives
Determine feasibility of a communication skills
training (CST) to prepare pediatric intensivists
for communicating bad news and assessing goals
of care in the pediatric intensive care unit
(PICU).
Describe the impact of CST on…
Objectives: * Identify parent perceptions of suffering at end of life in children with life-threatening complex chronic conditions. * Describe factors associated with child suffering at end of life. Original Research Background: Research in children…
Context: Children with cancer and cardiac disease suffer with high symptom burden at end of life (EOL). Little is known about the EOL experience for children with other complex chronic conditions (CCCs). Objective(s): To evaluate symptoms and…
CONTEXT: In clinical practice, some symptoms and problems frequently occur in combination, which may have consequences for symptom management. OBJECTIVES: Facing a growing number of non-cancer patients in palliative care, this study aimed to…
Context: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing…
Excess oral secretions or sialorrhea is a common problem affecting children and adults with neurological disorders, as well as those approaching the end of life because of a variety of underlying illnesses. Systemic anticholinergic medications are…
CONTEXT: Pediatric palliative care (PPC) can improve quality of life for children with life-threatening conditions and their families. However, PPC resources vary by state and within a state, PPC resources and personnel are often inequitably…
Objectives * Identify a simple, effective way to facilitate selfcare among hospital team members. * Describe the impact story time has had on the attendees' daily practice and self-care strategies. Background. Story time was born out of a photograph…
Cancer is the leading cause of death among the pediatric population with life-limiting conditions. The provision of palliative care at home and on the children's cancer unit has not been surveyed previously on a national scale. A survey of 71 (of 73)…
CONTEXT:
The hospital is a place full of distress and questions about the meaning of life. The death of a child can cause a spiritual struggle and crisis. Therefore, it is necessary for health care providers in the neonatal intensive care unit (NICU)…
CONTEXT: According to the International Observatory on End of Life Care, the level of pediatric palliative care in Japan is Level 2 (capacity building) and the current status of palliative care for children in Japan has not been clarified.…
CONTEXT: According to the International Observatory on End of Life Care, the level of pediatric palliative care in Japan is Level 2 (capacity building) and the current status of palliative care for children in Japan has not been clarified.…
CONTEXT: There are no validated Spanish tools to assess symptom burden in pediatric cancer. The Pediatric Memorial Symptom Assessment Scale (Pediatric-MSAS) is an English valid multidimensional and comprehensive instrument. OBJECTIVES: To validate…
Patients with advanced cancer often experience multiple concurrent symptoms. To explore this symptom clustering and its associated parameters, we prospectively surveyed 427 consecutive patients on admission to the Palliative Care Unit. There were 222…
Objectives: * List the types of community-based hospice and palliative care programs for children and describe barriers and facilitators to the use of these programs. * Describe the rates of referral and enrollment to community-based programs,…
The foundational principle of palliative care is to provide comfort, ameliorate symptoms, and offer emotional support when death is inevitable. Advance care planning (ACP) elicits patients' goals for the future. One important result of an ACP…
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…
Context: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative…
Bisphosphonates have become standard treatment in management of malignancy-induced hypercalcemia and malignant bone pain. One obstacle to the routine use of bisphosphonates in palliative patients is that oral bisphosphonates have low bioavailability…
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…
Death by neurologic criteria is a diagnosis that has presented complexities since its inception and pediatric cases are no exception. While rare, families may request accommodation to deviate from the traditionally defined diagnostic pathway based on…
Objectives: 1. Explain the association between household material hardship and distress in parents of children with advanced cancer. 2. Propose how housing insecurity can be modified for families of children with advanced cancer through providing…
Context Although systemic analgesic therapies are the mainstay of pain treatment in pediatric palliative care, there are cases where they fail to adequately relieve symptoms or produce side effects that undermine effectiveness. Regional anesthesia…
Objectives
Explain the rationale for a full-time physician as a
member of a home hospice team.
Describe the outcomes of an effort to put physicians
on home hospice teams.
Describe barriers to implementation.
Vol. 51 No. 2 February 2016 Schedule…
Context: Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer. Objective(s): To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer.…
Objectives: * State the elements and trajectory of distress for parents caring for children and adolescents undergoing hematopoietic stem cell transplantation (HSCT) or chimeric antigen receptor (CAR) T-cell therapy. * Examine the impact of parent…
CONTEXT: Communication is widely acknowledged as a crucial component of high-quality pediatric medical care, which is provided in situations in which parents typically experience strong emotions. OBJECTIVES: To explore emotion using the Linguistic…
Context: Pediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists…
Outcomes: 1. Upon successful completion, participants will self-report the ability to describe the current state of research around the use of psychedelic-assisted therapies in palliative care 2. Upon successful completion, participants will…
