Current Status of Intensive End-Of-Life Care in Children with Hematologic Malignancy: A Population-Based Study
Quality of life; Mechanical ventilation; Blood transfusion; Cardiopulmonary resuscitation; Extra-corporeal membrane oxygenation; ICU admission; Intravenous chemotherapy
BACKGROUND: Adult patients with hematologic malignancies are less likely to receive palliative care and more likely to accept intensive anti-cancer treatments until end-of-life than those with solid tumors, but limited data are available regarding the quality of end-of-life care (EOLC) for children with hematologic malignancies. To improve the quality of EOLC for children with hematologic malignancies, the aims of this study were (i) to compare intensive EOLC between children with hematologic malignancies and those with solid tumors; and (ii) to describe factors associated with intensive EOLC in children with hematologic malignancies. METHODS: We retrospectively reviewed 0- to 18-year-old patients with cancer, who died in hospital between April 2012 and March 2016 in Japan using the Diagnosis Procedure Combination per-diem payment system. Indicators of intensive inpatient EOLC were defined as intensive care unit admission, cardiopulmonary resuscitation (CPR), intubation and/or mechanical ventilation, hemodialysis, or extra-corporeal membrane oxygenation in the last 30 days of life, or intravenous chemotherapy in the last 14 days. We determined factors associated with intensive EOLC using regression models. Data regarding use of blood transfusion were also obtained from the database. RESULTS: Among 1199 patients, 433 (36%) had hematological malignancies. Children with hematologic malignancies were significantly more likely than those with solid tumors to have intubation and/or mechanical ventilation (37.9% vs. 23.5%), intensive care unit admission (21.9% vs. 7.2%), CPR (14.5% vs. 7.7%), hemodialysis (13.2% vs. 3.1%) or extra-corporeal membrane oxygenation (2.5% vs. 0.4%) in their last 30 days, or intravenous chemotherapy (47.8% vs. 18.4%; all P < .01) within their last 14 days of life. Over 90% of children with hematological malignancies received a blood transfusion within the last 7 days of life. For hematological malignancies, age under 5 years was associated with CPR and ≥ 2 intensive EOLC indicators. Longer hospital stays had decreased odds of ≥ 2 intensive EOLC indicators. CONCLUSION: Children with hematologic malignancies are more likely to receive intensive EOLC compared to those with solid tumors. A younger age and shorter hospital stay might be associated with intensive EOLC in children with hematologic malignancies.
Yotani N; Shinjo D; Kato M; Matsumoto K; Fushimi K; Kizawa Y
BMC Palliative Care
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/10.1186/s12904-021-00776-5" target="_blank" rel="noreferrer noopener">10.1186/s12904-021-00776-5</a>
Telemedicine in children with medical complexity on home ventilation during the COVID-19 pandemic
Adolescent; Child; Chronic Disease; COVID-19; Home Care Services; Hospitalization; mechanical ventilation; noninvasive ventilation; Pandemics; Artificial Respiration; respiratory technology; SARS-CoV-2; Telemedicine; telemonitoring
Children with medical complexity (CMC) are patients with one or more complex chronic conditions dependent on medical technologies. In our unit (Pediatric Pulmonology and Respiratory Intermediate Care Unit, Department of Pediatrics, "Bambino Gesù" Children's Hospital and Research Institute), we regularly follow-up CMC patients, particularly children on long-term, invasive (IMV) or noninvasive (NIV), ventilation. Children suffering from chronic diseases and with medical complexity have lost the possibility to go to the hospital during the COVID-19 pandemic. The aim of this article is to describe our experience with telemedicine (teleconsultation [TC] and telemonitoring of ventilator [TM]) in CMC on ventilation. We presented 21 children on long-term ventilation (NIV or IMV) whose planned hospital admission was postponed due to lockdown. A total of 12 healthcare problems were detected during scheduled TCs. Only one problem was not solved by our remote intervention. Specifically, TM has allowed us to change the ventilator parameters and to monitor patients on ventilation remotely. In conclusion, the use of telemedicine in CMC ventilated patients resulted in a feasible tool to avoid in-person visits during the pandemic.
Onofri A; Pavone M; De Santis S; Verrillo E; Caggiano S; Ullmann N; Cutrera R
Pediatric Pulmonology
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/10.1002/ppul.25289" target="_blank" rel="noreferrer noopener">10.1002/ppul.25289</a>
A description of children dependent on long term ventilation via tracheostomy and their hospital resource use
Child; Mechanical ventilation; Hospitalization; Tracheostomy; Health services
PURPOSE: To describe the proportion of children with an index hospitalization in 2014 who had established long-term invasive ventilator dependence (LTVD), and determine regional variation in hospital length of stay, charges, and readmissions. DESIGN AND METHODS: Multicenter, longitudinal, retrospective cohort study using a recently established algorithm to identify children with LTVD from the Pediatric Health Information System database with an index hospitalization at least once during 2014, excluding normal newborn care or chemotherapy, and the subset with established LTVD. Hospitals were grouped by geographic regions. Analysis included descriptive statistics and multi-variable mixed modeling for length of stay, charges, and readmissions. RESULTS: Of the 615,883 unique children discharged from 45 children's hospitals in 2014, 2235 (0.4%) had established LTVD. Of these, 342 (15%) were hospitalized in the Northeast, 677 (30%) Midwest, 733 (32%) South and 481 (22%) West. Most had at least two complex chronic conditions (97%) and used a medical device for at least two body systems (71%). No statistically significant regional variation was found for length of stay, charges, or readmissions after adjustment for child demographics, admission type, disposition, primary diagnosis, ICU stay, and number of chronic conditions. CONCLUSIONS: This study characterized the population of children with LTVD hospitalized in 2014. No regional variation was found for length of stay, charges, or readmissions. PRACTICE IMPLICATIONS: Children with established LTVD make up a small subset of all children admitted to children's hospitals however, they require substantial, costly, multifaceted care as most have additional complex chronic conditions and require multiple medical devices.
Giambra BK; Mangeot C; Benscoter DT; Britto MT
Journal of Pediatric Nursing
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.pedn.2021.03.028" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2021.03.028</a>
Development and validation of a novel informational booklet for pediatric long-term ventilation decision support
children; noninvasive ventilation; tracheostomy; mechanical ventilation; decision making shared; respiration artificial
OBJECTIVES: To provide accessible, uniform, comprehensive, and balanced information to families deciding whether to initiate long-term ventilation (LTV) for their child, we sought to develop and validate a novel informational resource. METHODS: The Ottawa Decision Support Framework was followed. Previous interviews with 44 lay and 15 professional stakeholders and published literature provided content for a booklet. Iterative versions were cognitive tested with six parents facing decisions and five pediatric intensivists. Ten parents facing decisions evaluated the booklet using the Preparation for Decision Making Scale and reported their decisional conflict, which was juxtaposed to the conflict of 21 parents who did not read it, using the Decisional Conflict Scale. Twelve home ventilation program directors evaluated the booklet's clinical sensibility and sensitivity, using a self-designed six-item questionnaire. Data presented using summary statistics. RESULTS: The illustrated booklet (6th-grade reading level) has nine topical sections on chronic respiratory failure and invasive and noninvasive LTV, including the option to forgo LTV. Ten parents who read the booklet rated it as helping "Quite a bit" or more on all items of the Preparation for Decision Making Scale and had seemingly less decisional conflict than 21 parents who did not. Twelve directors rated it highly for clinical sensibility and sensitivity. CONCLUSIONS: The LTV booklet was rigorously developed and favorably evaluated. It offers a resource to improve patient/family knowledge, supplement shared decision-making, and reduce decisional conflict around LTV decisions. Future studies should validate it in other settings and further study its effectiveness.
Edwards JD; Panitch HB; George M; Cirrilla AM; Grunstein E; Wolfe J; Nelson JE; Miller RL
Pediatric Pulmonology
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/10.1002/ppul.25221" target="_blank" rel="noreferrer noopener">10.1002/ppul.25221</a>
Impact of the Regional Pediatric Palliative Care Network on the Care of Children on Long-Term Ventilation: Could the Availability of a Residential Solution into the Network Reduce the Duration of Intensive Care Unit Staying for These Patients?
The prevalence of children on long-term ventilation (LTV) at home has increased in many countries. In Italy, there are 4.3/100,000 population younger than 18 years. Pediatric palliative care (PPC) network provides high-level care for these patients. In December 2003, in the northeast region of Italy, the regional authority promoted and developed a regional network for PPC, a regional network dedicated to the management of pediatric patients with life-limiting and life-threatening diseases. Characterization of LTV children population and description of care offered to them by a regional PPC network, based on the experience of the Veneto region were collected in a regional database. The regional database and evaluation of families' satisfaction, by means of a questionnaire, were longitudinally analyzed. We studied 56 children on LTV. The main involved diseases were neuromuscular diseases and myopathy. All patients had major comorbidities. Mean age was 4.5 years. The median age of starting ventilation was 3.9 years. The initial type of ventilation was invasive mechanical ventilation in 31 patients and noninvasive ventilation in 25 of them. The overall average frequency of hospitalizations for acute episodes was 0.7 admissions per year and the median duration of staying was 6 days. The median duration of staying in the intensive care unit (ICU) was significantly reduced after the opening of a residential solution (the pediatric hospice) (5 vs. 39 days). PPC network can offer global care to children on LTV. The availability of a residential structure into the PPC network seems to reduce the number and duration of hospital stays, especially in ICU, of this population, with likely cost savings. Further studies are necessary to confirm this hypothesis.
Rusalen F; Agosto C; Brugnaro L; Benini F
Journal of Pediatric Intensive Care
2018
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/10.1055/s-0037-1605369" target="_blank" rel="noreferrer noopener">10.1055/s-0037-1605369</a>
The Durban World Congress Ethics Round Table: III. Withdrawing Mechanical ventilation-the approach should be individualized
Ethics; Life-sustaining treatments; Mechanical ventilation; Withdrawing; Withholding
PURPOSE: The purpose of this study is to determine the approaches used in withdrawing mechanical ventilator support. MATERIALS AND METHODS: Speakers from the invited faculty of the World Federation of Societies of Intensive and Critical Care Medicine Congress in 2013 with an interest in ethics were asked to provide a detailed description of individual approaches to the process of withdrawal of mechanical ventilation. RESULTS: Twenty-one participants originating from 13 countries, responded to the questionnaire. Four respondents indicated that they do not practice withdrawal of mechanical ventilation, and another 4 indicated that their approach is highly variable depending on the clinical scenario. Immediate withdrawal of ventilation was practiced by a large number of the respondents (7/16; 44%). A terminal wean was practiced by just more than a third of the respondents (6/16; 38%). Extubation was practiced in more than 70% of instances among most of the respondents (9/17; 53%). Two of the respondents (2/17; 12%) indicated that they would extubate all patients, whereas 14 respondents indicated that they would not extubate all their patients. The emphasis was on tailoring the approach used to suit individual case scenarios. CONCLUSIONS: Withdrawing of ventilator support is not universal. However, even when withdrawing mechanical ventilation is acceptable, the approach to achieve this end point is highly variable and individualized.
2014-06
Paruk F; Kissoon N; Hartog CS; Feldman C; Hodgson ER; Lipman J; Guidet B; Du Bin; Argent A; Sprung CL
Journal Of Critical Care
2014
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.jcrc.2014.05.022" target="_blank" rel="noreferrer">10.1016/j.jcrc.2014.05.022</a>
Practical Recommendations For Diagnosis And Management Of Respiratory Muscle Weakness In Late-onset Pompe Disease
Adult; Glycogen Storage Disease Type Ii/diagnosis; Glycogen Storage Disease Type Ii/pathology; Glycogen Storage Disease Type Ii/therapy; Humans; Infant; Muscle Weakness/pathology; Muscle Weakness/therapy; Respiratory Function Tests; Respiratory Insufficiency/therapy; Respiratory Muscles/pathology; Surveys And Questionnaires
Pompe Disease; Cough Assistance; Mechanical Ventilation; Neuromuscular Disorders; Respiratory Muscle Weakness
Pompe disease is an autosomal-recessive lysosomal storage disorder characterized by progressive myopathy with proximal muscle weakness, respiratory muscle dysfunction, and cardiomyopathy (in infants only). In patients with juvenile or adult disease onset, respiratory muscle weakness may decline more rapidly than overall neurological disability. Sleep-disordered breathing, daytime hypercapnia, and the need for nocturnal ventilation eventually evolve in most patients. Additionally, respiratory muscle weakness leads to decreased cough and impaired airway clearance, increasing the risk of acute respiratory illness. Progressive respiratory muscle weakness is a major cause of morbidity and mortality in late-onset Pompe disease even if enzyme replacement therapy has been established. Practical knowledge of how to detect, monitor and manage respiratory muscle involvement is crucial for optimal patient care. A multidisciplinary approach combining the expertise of neurologists, pulmonologists, and intensive care specialists is needed. Based on the authors' own experience in over 200 patients, this article conveys expert recommendations for the diagnosis and management of respiratory muscle weakness and its sequelae in late-onset Pompe disease.
Boentert M; Prigent H; Várdi K; Jones HN; Mellies U; Simonds AK; Wenninger S; Barrot Cortés E; Confalonieri M
International Journal Of Molecular Sciences
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).
DOI: 10.3390/ijms17101735
Compassionate Extubation For A Peaceful Death In The Setting Of A Community Hospital: A Case-series Study
Geriatrics & Gerontology; Life; Quality Of Death; Withdrawal; Intensive-care-unit; Palliative Care; Palliative Extubation; Good Death; Mechanical Ventilation; Support; End; Compassionate Extubation; Euthanasia; Hospice Care; Murder; Terminal Care/methods; Airway Extubation - Methods; Hospitals; Community - Organization & Administration; Geriatrics; Compassionate Extubation; Rc952-954.6
Compassionate Extubation; Palliative Extubation; Good Death; Hospice Care; Quality Of Death
Background
The use of compassionate extubation (CE) to alleviate suffering by terminating mechanical ventilation and withdrawing the endotracheal tube requires professional adherence and efficiency. The Hospice Palliative Care Act, amended on January 9, 2013, legalizes the CE procedure in Taiwan.
Methods
From September 20, 2013 to September 2, 2014, the hospice palliative care team at a community hospital received 20 consultations for CE. Eight cases were excluded because of non-qualification. Following approval from the Ethics Committee, the medical records of the remaining 12 patients were reviewed and grouped by the underlying disease: A, “terminal-stage cancer”; B, “non-cancer out-of-hospital cardiac arrest”; and C, “non-cancer organ failure”. Time to extubation using a cut-off at 48 hours was assessed.
Results
The mean ages of patients (standard deviation) in groups A, B, and C were 66.3 (14.9) years, 72 (19.1) years, and 80.3 (4.0) years, respectively. The mean number of days of intubation at consultation were 6.8 (4.9), 7.3 (4.9), and 179.3 (271.6), respectively. The mean total doses of opioids (as morphine-equivalent dose) in the 24 hours preceding CE were 76 (87.5) mg, 3.3 (5.8) mg, and 43.3 (15.3) mg. The median times from extubation (range) to death were 97 (0.2–245) hours, 0.3 (0.2–0.4) hours, and 6.1 (3.6–71.8) hours. Compared to those requiring <48-hour preparatory time, patients requiring >48 hours to the moment of CE were younger (62.8 years vs 75.5 years), required a mean time of 122 hours (vs 30 hours) to CE (P=0.004), had shorter length of stay (33.3 days vs 77.8 days), required specialist social worker intervention in 75% of cases (vs 37.5%), and had a median duration of intubation of 11.5 days (vs 5.5 days).
Conclusion
CE was carried out according to protocol, and the median time from extubation to death varies determined by the underlying disease which was 0.3 hour in patients admitted after out-of-hospital cardiac arrest and 97 hours in patients with advanced cancer.
Victor C Kok
Clinical Interventions In Aging
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).