Pediatric Cardiology Provider Attitudes About Palliative Care: A Multicenter Survey Study
Cardiologist; Controlled Study; Heart Failure; Palliative Therapy; Pediatric Cardiology; Terminal Care; Cardiac Surgeon; Child; Clinical Study; Clinical Trial; Controlled Clinical Trial; Female; Human; Intensivist; Life Expectancy; Male; Medical School; Multicenter Study; Skill
While availability of palliative care consultation for children with advanced heart disease increases, little is known about cardiologist attitudes towards palliative care. We sought to describe perspectives of cardiologists regarding palliative care and to characterize their perceived competence in palliative care concepts. A cross-sectional survey of pediatric cardiologists and cardiac surgeons from 19 pediatric medical centers was performed. Overall response rate was 31% (183/589). Respondents had a median of 18 years of experience since medical school (range 2-49) and most practiced at academic centers (91%). Sixty-percent of respondents felt that palliative care consultations occur "too late" and the majority (85%) agreed that palliative care consultations are helpful. Barriers to requesting palliative care consultation were most frequently described as "referring to palliative care services too early will undermine parents' hope" (45%) and "concern that parents will think I am giving up on their child" (56%). Only 33% of cardiologists reported feeling "very" or "moderately" competent in prognosticating life expectancy while over 60% felt competent caring for children with heart disease around end of life, and nearly 80% felt competent discussing goals of care and code status. Greater perceived competence was associated with subspecialty (heart failure/intensivist vs. other) (OR 3.6, 95% CI 1.6-8.1, p = 0.003) and didactic training (OR 6.27, 95% CI 1.8-21.8, p = 0.004). These results underscore the need for further training in palliative care skills for pediatric cardiologists. Enhancing palliative care skills among cardiologists and facilitating partnership with subspecialty palliative care teams may improve overall care of children with advanced heart disease.
Balkin E M; Kirkpatrick J N; Kaufman BD; Swetz K M; Sleeper L A; Wolfe J; Blume E D
Pediatric Cardiology.
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/s00246-017-1663-0
Emerging Collaboration Between Palliative Care Specialists and Mechanical Circulatory Support Teams: A Qualitative Study
assisted circulation; medical specialist; palliative therapy; Adult; advance care planning; Article; Child; Clinical Article; decision making; Family; Heart-Assist Devices; heart failure; hospice care; Human; Medicaid; Medicare; Palliative Care; patient referral; Perception; Qualitative Research; Self-Help Devices; semi structured interview; telephone interview; ventricular assist device
Context Despite national requirements mandating collaboration between palliative care specialists and mechanical circulatory support (MCS) teams at institutions that place destination therapy ventricular assist devices, little is known about the nature of those collaborations or outcomes for patients and families. Objectives To assess how Centers for Medicare & Medicaid Services' regulations have changed collaboration between palliative care and MCS teams and how this collaboration is perceived by MCS team members. Methods After obtaining verbal consent, members of MCS teams were interviewed using semistructured telephone interviews. Interviews were transcribed, and content was coded and analyzed using qualitative methods. Results Models for collaboration varied widely between institutions. Several expected themes emerged from interviews: 1) improvements over time in the relationship between palliative care specialists and MCS teams, 2) palliative care specialists as facilitators of advance care planning, and 3) referral to hospice and ventricular assist device deactivation as specific areas for collaboration. Several unexpected themes also emerged: 4) the emergence of dedicated heart failure palliative care teams, 5) palliative care specialists as impartial voices in decision making, 6) palliative care specialists as extra support for MCS team members, and 7) the perception of improved patient and family experiences with palliative care team exposure. Conclusion Although the structure of collaboration varies between institutions, collaboration between MCS teams and palliative care specialists is increasing and often preceded the Centers for Medicare & Medicaid Services requirement. Overall impressions of palliative care specialists are highly positive, with perceptions of improved patient and family experience and decreased burden on MCS team members.
Sagin A; Kirkpatrick JN; Pisani BA; Fahlberg BB; Sundlof AL; O'Connor NR
Journal Of Pain And Symptom Management
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/10.1016/j.jpainsymman.2016.03.017" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.03.017</a>
Neurohormonal factors in the development of catabolic/anabolic imbalance and cachexia
Humans; Animals; Heart Failure; Cachexia/etiology/metabolism; Neurotransmitter Agents/metabolism; Biological Markers/blood; Congestive/complications/metabolism; Cytokines/metabolism; Glucocorticoids/metabolism; Insulin-Like Growth Factor I/metabolism; Renin-Angiotensin System/physiology
Mechanisms that lead to cachexia are still poorly understood. The neurohormonal changes that occur in severe disease states may cause an imbalance between protein synthesis and degradation at the cellular level, followed by muscle wasting. Here, we review actions of angiotensin II, TNF-alpha, corticosteroids, insulin-like growth factor-I (IGF-I), and the IGF binding proteins, factors that may each contribute to the metabolic imbalance. The complex endocrine, autocrine and intracellular interactions between these factors will be described with examples from patient, rat and cell culture studies. Moreover, some of the data supporting that each of these hormones may directly affect cellular protein degradation mechanisms will be reviewed. Knowledge on these regulatory mechanisms will facilitate the development of new pharmaceutical strategies to treat cachexia.
2002
Brink M; Anwar A; Delafontaine P
International Journal Of Cardiology
2002
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).
Journal Article
<a href="http://doi.org/10.1016/s0167-5273(02)00239-5" target="_blank" rel="noreferrer">10.1016/s0167-5273(02)00239-5</a>
Medicare cost in matched hospice and non-hospice cohorts
Female; Humans; Male; Survival Rate; Cohort Studies; Aged; Middle Aged; Health Care Costs; Heart Failure; Case-Control Studies; 80 and over; Medicare/economics; Alzheimer Disease/economics/mortality/therapy; Cerebrovascular Accident/economics/mortality/therapy; Congestive/economics/mortality/therapy; Hospice Care/economics; Neoplasms/economics/mortality/therapy
Hospice care is perceived as enhancing life quality for patients with advanced, incurable illness, but cost comparisons to non-hospice patients are difficult to make. The very large Medicare expenditures for care given during the end of life, combined with the pressure on Medicare spending, make this information important. We sought to identify cost differences between patients who do and do not elect to receive Medicare-paid hospice benefits. We introduce an innovative prospective/retrospective case-control method that we used to study 8,700 patients from a sample of 5% of the entire Medicare beneficiary population for 1999-2000 associated with 16 narrowly defined indicative markers. For the majority of cohorts, mean and median Medicare costs were lower for patients enrolled in hospice care. The lower costs were not associated with shorter duration until death. For important terminal medical conditions, including non-cancers, costs are lower for patients receiving hospice care. The lower cost is not associated with shorter time until death, and appears to be associated with longer mean time until death.
2004
Pyenson B; Connor S; Fitch K; Kinzbrunner B
Journal Of Pain And Symptom Management
2004
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).
Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2004.05.003" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2004.05.003</a>
The syndrome of cardiac cachexia
Humans; Prognosis; Heart Failure; Non-U.S. Gov't; Research Support; Syndrome; Cachexia/diagnosis/etiology/therapy; Congestive/complications/diagnosis/therapy; Greece
Cachexia, i.e. body wasting, has long been recognised as a serious complication of chronic illness. The occurrence of wasting in chronic heart failure (CHF) has been known for many centuries, but it has not been investigated extensively until recently. Cardiac cachexia is a common complication of CHF which is associated with poor prognosis, independently of functional disease severity, age, measures of exercise capacity, and left ventricular ejection fraction. Patients with cardiac cachexia suffer from generalised loss of lean tissue, fat tissue, as well as bone tissue. Cachectic CHF patients are weaker and fatigue earlier. This is due to both reduced skeletal muscle mass and impaired skeletal muscle quality. Concerning the pathophysiology of cardiac cachexia, there is increasing evidence that neurohormonal and immune abnormalities may play a crucial role. Cachectic CHF patients have raised plasma levels of norepinephrine, epinephrine, and cortisol, and they show high plasma renin activity and increased plasma aldosterone levels. A number of studies have also shown that cardiac cachexia is linked to raised plasma levels of inflammatory cytokines, such as tumor necrosis factor alpha. The available evidence suggests that cardiac cachexia is a multifactorial neuroendocrine and metabolic disorder with a poor prognosis. A complex imbalance of different body systems, termed catabolic/anabolic imbalance, is likely to be responsible for the development of the wasting process. It is hoped that a better understanding of the pathophysiological mechanisms involved in cardiac cachexia will lead to novel therapeutic strategies in the (near) future.
2002
Anker SD; Sharma R
International Journal Of Cardiology
2002
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).
Journal Article
<a href="http://doi.org/10.1007/978-1-4615-1449-7_11" target="_blank" rel="noreferrer">10.1007/978-1-4615-1449-7_11</a>
Nonheart failure-associated elevation of amino terminal pro-brain natriuretic peptide in the setting of sepsis
Female; Humans; Male; Aged; Fatal Outcome; Heart Failure; 80 and over; Biological Markers/blood; Brain/blood; Congestive/blood/drug therapy; Natriuretic Peptide; Peptide Fragments/blood; Protein Precursors/blood; Sepsis/blood/drug therapy; Telemeres
In addition to its importance in clinical assessment, N-terminal pro-brain natriuretic peptide (NT pro-BNP) is a valuable marker for evaluation of treatment and prognosis of heart failure. However, there are situations where NT pro-BNP is not related to myocardial dysfunction. Two cases of sepsis with markedly elevated NT pro-BNP levels that are not indicative of depressed myocardial function are described.
2006
Bar SL; Swiggum E; Straatman L; Ignaszewski A
The Canadian Journal Of Cardiology
2006
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Journal Article
<a href="http://doi.org/10.1016/s0828-282x(06)70908-4" target="_blank" rel="noreferrer">10.1016/s0828-282x(06)70908-4</a>
ESPEN Guidelines on Enteral Nutrition: Cardiology and pulmonology
Humans; Physician's Practice Patterns; Heart Failure; Europe; Pulmonary Disease; Cardiology/standards; Chronic Obstructive/therapy; Congestive/therapy; Enteral Nutrition/standards; Pulmonary Disease (Specialty)/standards
These guidelines are intended to give evidence-based recommendations for the use of enteral nutrition (EN) in patients with chronic heart failure (CHF) and chronic obstructive pulmonary disease (COPD). They were developed by an interdisciplinary expert group in accordance with officially accepted standards and are based on all relevant publications since 1985. They have been discussed and accepted in a consensus conference. EN by means of oral nutritional supplements (ONS) or tube feeding (TF) enables nutritional intake to be maintained or increased when normal oral intake is inadequate. No data are yet available concerning the effects of EN on cachexia in CHF patients. However, EN is recommended to stop or reverse weight loss on the basis of physiological plausibility. In COPD patients, EN in combination with exercise and anabolic pharmacotherapy has the potential to improve nutritional status and function. Frequent small amounts of ONS are preferred in order to avoid postprandial dyspnoea and satiety as well as to improve compliance.
2006
Anker SD; John M; Pedersen PU; Raguso C; Cicoira M; Dardai E; Laviano A; Ponikowski P; Schols AM; DGEM(German Society for Nutritional Medicine); Becker HF; Bohm M; Brunkhorst FM; Vogelmeier C; European Society for Parenteral (ESPEN); Enteral Nutrition
Clinical Nutrition (edinburgh, Scotland)
2006
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).
Journal Article
<a href="http://doi.org/10.1016/j.clnu.2006.01.017" target="_blank" rel="noreferrer">10.1016/j.clnu.2006.01.017</a>
When a child becomes terminal: Discrepant adolescent and parent perspectives on discussing a terminal prognosis with adolescents with cardiomyopathy, heart failure, and heart transplant
advance care planning; adolescent; death; outpatient; prognosis; school child; cancer prognosis; malignant neoplasm; heart failure; conference abstract; human; child; controlled study; perception; conversation; cardiomyopathy; heart graft
Introduction: Adolescents with cardiomyopathy, heart failure, and heart transplant (CMHF/HTx) are at risk of life-changing complications and premature death. The importance of advance care planning (ACP) in pediatric patients with HIV and cancer has been demonstrated, but the ACP preferences of adolescents with heart disease and their parents have not been evaluated. We aimed to describe and compare ACP preferences of adolescents with CMHF/HTx and their parents. Method(s): Outpatient adolescents with CMHF/HTx, aged 12-18y, and their parents completed a self-administered survey from March to May 2018. The survey evaluated preferences regarding the importance of ACP, sharing of prognostic information, and timing of ACP discussions. Participants answered independently. In addition, parents were asked their perception of their child's response. Adolescents' and parents' survey responses were compared. Survey responses were recoded as dichotomous variables and compared using McNemar's test. Result(s): Twenty-five dyads (mean adolescent age 15.0 +/- 1.8 years) completed the survey. Most adolescents (71%) considered their current health to be very good or excellent. ACP importance was ranked moderately or extremely important by 44% adolescents compared to 88% parents (p=0.006). Most adolescents (88%) reported that they wanted their doctor to inform them as soon as their doctor knew they were dying; in contrast, only 44% of parents wanted the doctor to share this information with their child (p=0.003). The majority of parents (84%) and adolescents (80%) wanted the adolescent to be involved in end-of-life (EOL) decisions. Conclusion(s): While many adolescents with CMHF/HTx did not report that ACP was of great importance, they do not want to be kept in the dark if death is near. Adolescents with CMHF/HTx reported that they want to be told as soon as the physician knows they are going to die and want to be involved in EOL decisions. Parents want their adolescent to be involved in EOL decisions, but are less likely to want to share a terminal prognosis with the adolescent. These results highlight discrepancies between adolescent and parent views regarding EOL conversations. More research is needed to inform effective EOL communication between parent, adolescent, and provider.
Hansen K; Edwards L A; Luong R; Yohannes K; Halpern-Felsher B; Cohen H; Kaufman B
Circulation. Conference
2018
The Use of Concurrent Home Hospice for Pediatric Heart Failure Patients Awaiting Heart Transplant on Milrinone and/or Ventricular Assist Device
78415-72-2 (milrinone); body weight; child; clergy; conference abstract; controlled study; dietitian; emergency ward; feeding; follow up; heart failure; heart graft; home visit; hospice; hospital admission; hospital discharge; hospital readmission; human; inotropism; milrinone; money; mortality; outpatient; palliative therapy; satisfaction; social worker; travel
Purpose: Pediatric patients (pt) awaiting heart transplantation (HTX) are among the most fragile patients, even more so when on continuous milrinone infusion or ventricular assist device (VAD). These pt are often in the hospital for very long periods of time rather than at home where there is improved quality of life and less exposure to hospital acquired infections. In our state pt < than 21 years of age are able to receive concurrent care home hospice (HH) and still remain listed for HTX. We hypothesize that the continued utilization of HH will decrease the frequency of clinic visits, emergency department (ED) use and hospital admissions.
Burnette A L; Henderson H T; Adams V L; Savage A J
Journal of Heart and Lung Transplantation
2020
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.healun.2020.01.072" target="_blank" rel="noreferrer noopener">10.1016/j.healun.2020.01.072</a>
Pediatric Cardiac Critical Care Transport and Palliative Care: A Case Series
hospice; pediatrics; palliative medicine; congenital heart disease; heart surgery; heart failure
OBJECTIVE: To present our center's experience with terminal extubation in 3 palliative critical care home transports from the Pediatric Cardiac Intensive Unit. DESIGN: All cases were identified from our Cardiovascular intensive care unit ( CVICU). Patients were terminally ill children with no other surgical or medical option who were transported home between 2014 and 2018, for terminal extubation and end-of-life care according to their families' wishes. INTERVENTIONS: The patients were 7, 9 months, and 19 years; and they had very complex and chronic conditions. The families were approached by the CVICU staff during multidisciplinary meetings, where goals of care were established. Parental expectations were clarified, and palliative care team was involved, as well as home hospice was arranged pre transfer. The transfer process was discussed and all the needs were established. All patients had unstable medical conditions, with needs for transport for withdrawal of life support and death at home. Each case needed a highly trained team to support life while in transport. The need of these patients required coordination with home palliative care services, as well as community resources due to difficulty to get in their homes. CONCLUSION(S): Transportation of pediatric cardiac critical care patients for terminal extubation at home is a relatively infrequent practice. It is a feasible alternative for families seeking out of the hospital end-of-life care for their critically ill and technology dependent children. Our single-center experience supports the need for development of formal programs for end-of-life critical care transports.
Garcia X; Frazier E; Kane J; Jones A; Brown C; Bryant T; Prodhan P
The American journal of hospice & palliative care
2020
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/10.1177/1049909120928280" target="_blank" rel="noreferrer noopener">10.1177/1049909120928280</a>
Compassionate Deactivation of Pediatric Ventricular Assist Devices: A Review of 14 Cases
pediatric; end-of-life; palliative; heart failure; compassionate deactivation; ventricular assist
CONTEXT: Compassionate deactivation (CD) of ventricular assist device (VAD) support is a recognized option for children when the burden of therapy outweighs the benefits. OBJECTIVES: To describe the prevalence, indications, and outcomes of CD of children supported by VADs at the end of life. METHODS: Review of cases of CD at our institution between 2011-2020. To distinguish CD from other situations where VAD support is discontinued, patients were excluded from the study if they died during resuscitation (including ECMO), experienced brain or circulatory death prior to deactivation, or experienced a non-survivable brain injury likely to result in imminent death regardless of VAD status. RESULTS: Of 24 deaths on VAD, 14 (58%) were CD. Median age was 5.7 (IQR 0.6, 11.6) years; 6 (43%) had congenital heart disease; 4 (29%) were on a device that can be used outside of the hospital. CD occurred after 40 (IQR: 26, 75) days of support; none while active transplant candidates. CD discussions were initiated by the caregiver in 6 (43%) cases, with the remainder initiated by a medical provider. Reasons for CD were multifactorial, including end-organ injury, infection, and stroke. CD occurred with endotracheal extubation and/or discontinuation of inotropes in 12 (86%) cases, and death occurred within 10 (IQR: 4, 23) minutes of CD. CONCLUSIONS: CD is the mode of death in more than half of our VAD non-survivors and is pursued for reasons primarily related to noncardiac events. Caregivers and providers both initiate CD discussions. Ventilatory and inotropic support is often withdrawn at time of CD with ensuing death.
Hollander SA; Kaufman BD; Bui C; Gregori B; Murray JM; Sacks L; Ryan KR; Ma M; Rosenthal DN; Char D
Journal of Pain and Symptom Management
2021
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.jpainsymman.2021.01.125" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.01.125</a>