BACKGROUND: Guidance and data on ventricular assist device (VAD) support for children with chemotherapy-induced cardiomyopathy, particularly within the first 2 years after chemotherapy, are limited. METHODS: We performed a single-center retrospective case series, reviewing medical records of children <18 years of age with chemotherapy-induced cardiomyopathy and advanced heart failure (HF) who received durable VAD support. RESULTS: Six patients met inclusion criteria-5 HeartWare™ HVAD, 1 Berlin Heart EXCOR® . Median age at cancer diagnosis was 6 years (IQR 4.5-10 years). Median dose of anthracycline received was 540 mg/m2 (IQR 450-630 mg/m2 ). All patients developed HF within 1 year after initiation of cancer treatment (median 8 months, IQR 6-11.5 months) and were initiated on durable VAD support at a median of 8 months after completion of cancer treatment (IQR 3.3-43.5 months). Four patients had significant right ventricular dysfunction needing oral pulmonary vasodilator therapy, one patient had a major bleeding complication, and two patients had thromboembolic strokes while on VAD support. Median duration of VAD support was 7.5 months (IQR 3-11.3 months). Two patients underwent VAD explant due to recovery of LV function, one died due to cancer progression, and three underwent heart transplantation. CONCLUSIONS: Durable VAD support should be considered as a therapeutic option for children who have advanced HF due to chemotherapy-induced cardiomyopathy, even within 2 years of completing cancer treatment. A multi-disciplinary approach is essential for appropriate patient selection prior to implant and to ensure comprehensive care throughout the duration of VAD support.
Antineoplastic Agents , Cardiomyopathies , Heart Failure , Heart Transplantation , Heart-Assist Devices , Antineoplastic Agents/adverse effects , Cardiomyopathies/chemically induced , Cardiomyopathies/therapy , Child , Heart Failure/etiology , Heart Transplantation/adverse effects , Heart-Assist Devices/adverse effects , Humans , Retrospective Studies , Treatment Outcome
Heart failure is a life-changing diagnosis for a child and their family. Pediatric patients with heart failure experience significant morbidity and frequent hospitalizations, and many require advanced therapies such as mechanical circulatory support and/or heart transplantation. Pediatric palliative care is an integral resource for the care of patients with heart failure along its continuum. This includes support during the grief of a new diagnosis in a child critically ill with decompensated heart failure, discussion of goals of care and the complexities of mechanical circulatory support, the pensive wait for heart transplantation, and symptom management and psychosocial support throughout the journey. In this article, we discuss the scope of pediatric palliative care in the realm of pediatric heart failure, ventricular assist device (VAD) support, and heart transplantation. We review the limited, albeit growing, literature in this field, with an added focus on difficult conversation and decision support surrounding re-transplantation, HF in young adults with congenital heart disease, the possibility of destination therapy VAD, and the grimmest decision of VAD de-activation.
BACKGROUND: Although pediatric nurses working in children's hospitals often provide care to dying children, little is known about their palliative care beliefs and experiences as individuals or members of groups within the hospital. OBJECTIVE: To describe pediatric nurses' ratings of palliative care goals and problems, as individuals and members of clusters of nurses with similar views, and nurses' degree of collaboration with an inpatient palliative care team across hospital units. METHOD: A cross-sectional survey of nurses at a freestanding children's hospital in 2005. RESULTS: Nurses rated the most important goals as managing pain, maintaining the child's quality of life, and improving communication. Commonly cited problems were lack of opportunity to debrief after a patient's death, uncertainty about the goals of care, and the health care team's reluctance to discuss hospice with family. Based on individual views about goals and problems, nurses clustered into 5 groups that differed in terms of the adamancy of their views and the scope of the goals and problems they considered important or significant. The hospital unit was the most important factor in predicting nurses' degree of collaboration with the palliative care team even after accounting for individual characteristics. CONCLUSIONS: Pediatric nurses broadly endorse both the importance of palliative care goals and the presence of problems yet perceive the importance of these goals and problems differently. Further, they vary in their level of collaborative practice with a palliative care team in ways that should be accounted for when planning and implementing palliative care programs.
Attitude of Health Personnel , Bereavement , Hospitals, Pediatric , Nursing Staff, Hospital/psychology , Palliative Care , Terminal Care , Cross-Sectional Studies , Female , Humans , Male , Nurses/psychology
Gastrointestinal symptoms are suffered commonly by children at the end of life. Diagnosis and management of these common symptoms include careful history and physical examination to assess for possible causes; treatment - pharmacologic and nonpharmacologic; and a discussion with patients and families of care goals. Aggressive management of these symptoms is essential to improving the quality of life for these children.
Anorexia/therapy , Cachexia/therapy , Constipation/drug therapy , Nausea/therapy , Palliative Care , Vomiting/prevention & control , Anorexia/etiology , Cachexia/etiology , Child , Constipation/etiology , Humans , Medulla Oblongata/physiology , Nausea/etiology , Neoplasms/complications , Vomiting/etiology
The provision of high-quality palliative care services to dying children and their families often requires extensive collaboration between hospital-based and community-based care teams. This article describes the origins and development of the Partners in Pediatric Palliative Care program, which has provided pediatric-specific educational offerings and fostered joint endeavors between a palliative care service located in a tertiary care children's hospital and a wide range of hospice and home care agencies in 5 states. The Partners in Pediatric Palliative Care program is evaluated in terms of the favorable ratings that attendees have given the educational components, the relatively modest direct costs of mounting the regional meetings, and the expanded capacity to provide home-based palliative services to children and families who desire them. The Partners in Pediatric Palliative Care program provides another feasible means for hospitals and community agencies to work together to improve pediatric palliative care.
Community-Institutional Relations , Continuity of Patient Care/organization & administration , Home Care Services/organization & administration , Hospitals, Pediatric/organization & administration , Palliative Care/organization & administration , Child , Humans , Infant, Newborn , Patient Care Team/organization & administration , United States
OBJECTIVE: The purpose of this work was to test the hypothesis that individual nurses' level of hope is associated with greater self-reported comfort and competence in providing palliative care. METHODS: We conducted a Web-based cross-sectional survey at the Children's Hospital of Philadelphia, a large referral hospital, during the spring of 2005 with all of the employed nurses. The response rate was 44% (410 of 932 eligible nurses). The questions were adapted from published studies or written for this study regarding nurses' knowledge, attitudes, practices, and experiences regarding various aspects of palliative care. We used the Adult Dispositional Hope Scale. RESULTS: Respondents, asked to rate their degree of agreement (+2, strongly agree to -2, strongly disagree) with the statement that they were "comfortable working with dying children and their families," reported a mean score of 0.5. Regarding whether they "find it very difficult to talk about death and dying with children and families," the mean score was -0.1. Nurses specifically reported feeling most competent regarding pain management and least competent regarding talking with children and families about dying. After multivariable adjustment, greater number of years in nursing practice, more hours of palliative care education, and higher scores on the Hope Scale, each were significantly associated with higher levels of comfort working with dying children and the families, lower levels of difficulty talking about death and dying, and higher levels of palliative care competency. CONCLUSIONS: Nurses' level of hope is associated with their self-reported comfort and competence regarding palliative care.
Health Knowledge, Attitudes, Practice , Nursing Staff, Hospital/psychology , Palliative Care/psychology , Adult , Attitude to Death , Child , Communication , Data Collection , Female , Hospitals, Pediatric , Humans , Male , Middle Aged , Nurse-Patient Relations , Professional-Family Relations
The pediatric hospitalist plays an integral role in providing palliative, end-of-life, and bereavement care for children and families. This article focuses on a multifaceted approach to this domain of care in which the physician is a key member of an interdisciplinary team. We believe that we can improve quality of life and relieve suffering only by paying attention to the medical, emotional, spiritual, and practical needs and goals of dying children and their loved ones.
Hospice Care/organization & administration , Palliative Care/organization & administration , Pediatrics/standards , Terminal Care/organization & administration , Attitude to Death , Ethics, Medical , Humans , Physician's Role
