Tracheostomy in Pediatric Intensive Care Unit: When and Where?

Background: Tracheostomy was first observed in Egyptian drawings in 3600 BC and performed frequently during the 1800’s diphtheria epidemic. Objectives: The aim of this study was to elucidate the indications, complications, mortality rate, and the effect of pediatric tracheostomy on length of PICU or hospital stay. Materials and Methods: Demographic characteristics, diagnosis at admission, duration of ventilation of 152 patients were analyzed retrospectively. Results: The most common tracheostomy indication was prolonged intubation. The mean duration of mechanical ventilation before tracheostomy was 23.8 days. Forty five percent of the tracheostomy procedures were performed at bedside. Neither the place nor the age had any effect on the development of complications (P = 0.701, P = 0.622). The procedure enabled 62% of the patients to be discharged from hospital. Conclusions: Tracheostomy facilitates discharge and weaning of mechanical ventilation. Although the timing of tracheostomy has to be determined for each individual patient, three weeks of ventilation seems to be a suitable period for tracheostomy. Tracheostomy can be performed at bedside safely but patient selection should be made carefully.

Palliative care team visits. Qualitative study through participant observation

Objectives: To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants. Methods: A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room) were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed. Results: The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients\' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources. Conclusion: Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources.

Children with Special Health Care Needs: Comparison of the Effects of Home Care Setting, Prescribed Pediatric Extended Care Setting, and Long-Term Care Setting on Child and Family Health Outcomes and Health Care Service Use

Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL TM Generic Core Module for child health and functioning, PedsQL TM Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.

Quality in palliative care from the patient perspective : Instrument development, perceptions of care received and the importance of care

The overall aim was to investigate the quality of palliative care from the patient perspective, to adapt and psychometrically evaluate the Quality from Patients’ Perspective instrument specific to palliative care (QPP-PC) and investigate the relationship between the combination of person- and organization-related conditions and patients’ perceptions of care quality. Methods: In the systematic literature review (I), 23 studies from 6 databases and reference lists in 2014 were synthesized by integrative thematic analysis. The quantitative studies (II–IV) had cross-sectional designs including 191 patients (73% RR) from hospice inpatient care, hospice day care, palliative units in nursing homes and home care in 2013–2014. A modified version of QPP was used. Additionally, person- and organization-related conditions were assessed. Psychometric evaluation, descriptive and inferential statistics were used. Main findings: Patients’ preferences for palliative care included living a meaningful life and responsive healthcare personnel, care environment and organization of care (I). The QPP-PC was developed, comprising 12 factors (49 items), 3 single items and 4 dimensions: medical–technical competence, physical–technical conditions, identity–oriented approach, and socio-cultural atmosphere (II). QPP-PC measured patients’ perceived reality (PR) and subjective importance (SI) of care quality. PR differed across settings, but SI did not (III). All settings exhibited areas of strength and for improvement (II, III). Person-related conditions seemed to be related to SI, and person- and organization-related conditions to PR, explaining 18–30 and 22-29% respectively of the variance (IV). Conclusions: The patient perspective of care quality (SI and PR) should be integrated into daily care and improvement initiatives in palliative care. The QPP-PC can measure patients’ perceptions of care quality. Registered nurses and other healthcare personnel need awareness of person- and organization-related conditions to provide high-quality person-centred care.

Búsqueda sistemática de guías de práctica clínica en cuidados paliativos pediátricos

Actualmente se estima que más de 160.000 niños en todo el mundo son diagnosticados de cáncer cada año y esta cifra podría ser considerablemente superior debido que los datos en su mayoría son imprecisos (1), hay un gran número de niños que junto con sus familias deben hacer frente a las implicaciones del diagnóstico de cáncer o enfermedad terminal, del tratamiento y el pronóstico. En Colombia se viene practicando en los servicios de pediatría, sin embargo no se realiza bajo un protocolo establecido El objetivo de este trabajo fue realizar una búsqueda sistemática de Guías de Práctica Clínica en Cuidados Paliativos Pediátricos basadas en la evidencia en el mundo y evaluarlas mediante preguntas clínicas preestablecidas, y bajo la metodología GLIA indicada por el ministerio de protección social, teniendo en cuenta la realidad colombiana y los principios de accesibilidad, calidad y eficiencia consagrados en el Sistema General de Seguridad Social de Salud de Colombia, con el fin de identificar la mejor Guía de Práctica Clínica (GPC) para la población de la Fundación Cardioinfantil de Bogotá – Colombia. Como resultado de la búsqueda se obtuvieron 32 GPC en Cuidados Paliativos de los cuales 8 guías se relacionaban con la población objeto y solo 5 de las guías respondían a las preguntas clínicas. El informe se elaboró según la metodología PRISMA con el fin constituir una base de datos para posteriores estudios, realización de guías o la adaptación de guías basadas en la evidencia.

Bridging the Gap: Developing a Palliative Approach to Care for Young Adults with Life Limiting Conditions

Bridging the Gap: Developing a Palliative Approach to Care for Young Adults with Life Limiting Conditions

More young adults (YAs) with life limiting conditions (LLC) are surviving into adulthood as earlier diagnosis and improved medical management in pediatric care lead to higher rates of survival for cancer, congenital heart and neuromuscular conditions. When these YAs leave pediatric care, they leave behind comprehensive and coordinated health, social and education services for uncoordinated adult systems, with limited access to palliative services they received in pediatric care.

YAs with LLCs will benefit from a public health palliative approach to care. This approach better matches their chronic disease trajectories of a series of declining plateaus over a period of months to years, punctuated by unpredictable periodic crises. Public health palliative care is a blended provision of health care and community services based on evidence that health care is most effective and least expensive when offered in conjunction with a complement of services that reflects social determinants of health and well-being. For YAs with LLCs, these resources will support their health, social, vocational, independent living, and educational goals to maximize their opportunities in an abbreviated time frame.


The objectives of this workshop are to:

1. Provide an overview of the young adult population with palliative care needs.
2. Discuss current care of this population.
3. Highlight results from three recent projects to examine and address needs of this population.
4. Dialogue with audience about other programs, initiatives, or ideas to address the needs of this population.

We look forward to robust conversations and ideas from your practice and research.

IPH response to Palliative and End of Life Care Strategy Consultation

Palliative care and end of life care is the active, holistic care of patients with advanced and progressive illness.  It is an integral part of the care delivered by all health and social care professionals, and indeed by families and carers, to those living with, and dying from any advanced, progressive and incurable conditions.  The Department of Health, Social Services and Public Safety (NI) issued a consultation document on a 5 year Strategy in December 2009.

Soins palliatifs et soins de support: à la frontière de la toute-puissance médicale [Palliative and supportive care: at the frontiers of medical omnipotence].

Cancer patients have physical, social, spiritual and emotional needs. They may suffer from severe physical symptoms, from social isolation, spiritual abandonment, and emotions such as sadness and anxiety, or feelings of deception, helplessness, anger and guilt. In some of them, the disease is rapidly progressing and ultimately they die. Their demanding care evokes intense feelings in health care providers, the more since these incurable patients represent a challenge, which could be condensed under the heading "the challenge of medical omnipotence". We suppose that the way health care providers cope with these circumstances has a profound influence on the way these patients are cared for. The attitudes towards the emerging heterogeneous movement of palliative and supportive care and towards its different models of implementation can be viewed from this point of view. We try to demonstrate these interrelations and to discuss the danger that may arise if they remain obscure and unreflected.

Pressure Ulcers In Palliative home Care Patients: Prevalence And Characteristics

Persons in palliative care develop pressure ulcers (PU) as death approaches, but the extent of the problem is still unknown. The objectives were to identify the prevalence of pressure ulcers in people with cancer in palliative home care, compare the socio-demographic and clinical profile of patients with and without pressure ulcers, and analyze the characteristics of the ulcers. This descriptive, cross-sectional study included 64 people with advanced cancer in palliative home care. Twelve of them (18.8%) had PU, of whom 75.0% were men. The participants had one to three PU, amounting to 19 lesions, 89.4% of those developed at home and 47.4% at stage 3. The presence of PU was higher among those who had a history of previous wound. PU consisted of a significant event occurring in the studied population, indicating that preventive measures should be included in the home palliative care health team.


Transition from pediatric to adult health care: expectations of adolescents with chronic disorders and their parents.

The aim of this study was to assess the expectations of adolescents with chronic disorders with regard to transition from pediatric to adult health care and to compare them with the expectations of their parents. A cross-sectional study was carried out including 283 adolescents with chronic disorders, aged 14-25 years (median age, 16.0 years), and not yet transferred to adult health care, and their 318 parents from two university children's hospitals. The majority of adolescents and parents (64%/70%) perceived the ages of 18-19 years and older as the best time to transfer to adult health care. Chronological age and feeling too old to see a pediatrician were reported as the most important decision factors for the transfer while the severity of the disease was not considered important. The most relevant barriers were feeling at ease with the pediatrician (45%/38%), anxiety (20%/24%), and lack of information about the adult specialist and health care (18%/27%). Of the 51% of adolescents with whom the pediatric specialist had spoken about the transfer, 53% of adolescents and 69% of parents preferred a joint transfer meeting with the pediatric and adult specialist, and 24% of these adolescents declared that their health professional had offered this option. In summary, the age preference for adolescents with chronic disorders and their parents to transfer to adult health care was higher than the upper age limits for admission to pediatric health care in many European countries. Anxiety and a lack of information of both adolescents and their parents were among the most important barriers for a smooth and timely transfer according to adolescents and parents.

Palliative and supportive care: at the frontier of medical omnipotence.

Cancer patients have physical, social, spiritual an emotional needs. They may suffer from severe physical symptoms, from social isolation and a sense of spiritual abandonment, and emotions such as sadness and anxiety, or feeling of deception, helplessness, anger and guilt. In some of them, the disease is rapidly progressive and they ultimately die. Their demanding care evokes intense feelings in health care providers, the more so since these incurable patients represent a challenge, which can be characterized as one of 'medical omnipotence'. It may be assumed that the way health care providers cope with these circumstances profoundly influences the way these patients are cared for. Attitudes regarding the emerging heterogeneous movement of palliative and supportive care and its different models of implementation can be viewed form this vantage point. Here we look at these interrelations and discuss the potential pitfalls if they are ignored and remain unexamined.

Intensive care unit utilization among patients with cancer at the end of life

Over the last 2 decades, survival rates in critically ill cancer patients have improved. Despite the increase in survival, the intensive care unit (ICU) continues to be a location where end-of-life care takes place. More than 20% of deaths in the United States occur after admission to an ICU, and as baby boomers reach the seventh and eighth decades of their lives, the volume of patients in the ICU is predicted to rise. The aim of this study was to evaluate intensive care unit utilization among patients with cancer who were at the end of life. End of life was defined using decedent and high-risk cohort study designs. The decedent study evaluated characteristics and ICU utilization during the terminal hospital stay among patients who died at The University of Texas MD Anderson Cancer Center during 2003-2007. The high-risk cohort study evaluated characteristics and ICU utilization during the index hospital stay among patients admitted to MD Anderson during 2003-2007 with a high risk of in-hospital mortality. Factors associated with higher ICU utilization in the decedent study included non-local residence, hematologic and non-metastatic solid tumor malignancies, malignancy diagnosed within 2 months, and elective admission to surgical or pediatric services. Having a palliative care consultation on admission was associated with dying in the hospital without ICU services. In the cohort of patients with high risk of in-hospital mortality, patients who went to the ICU were more likely to be younger, male, with newly diagnosed non-metastatic solid tumor or hematologic malignancy, and admitted from the emergency center to one of the surgical services. A palliative care consultation on admission was associated with a decreased likelihood of having an ICU stay. There were no differences in ethnicity, marital status, comorbidities, or insurance status between patients who did and did not utilize ICU services. Inpatient mortality probability models developed for the general population are inadequate in predicting in-hospital mortality for patients with cancer. The following characteristics that differed between the decedent study and high-risk cohort study can be considered in future research to predict risk of in-hospital mortality for patients with cancer: ethnicity, type and stage of malignancy, time since diagnosis, and having advance directives. Identifying those at risk can precipitate discussions in advance to ensure care remains appropriate and in accordance with the wishes of the patient and family.^

Paediatric palliative home care with Internet-based video-phones: lessons learnt

We have designed and tested an Internet-based video-phone suitable for use in the homes of families in need of paediatric palliative care services. The equipment uses an ordinary telephone line and includes a PC, Web camera and modem housed in a custom-made box. In initial field testing, six clinical consultations were conducted in a one-month trial of the videophone with a family in receipt of palliative care services who were living in the outer suburbs of Brisbane. Problems with variability in call quality-namely audio and video freezing, and audio break-up-prompted further laboratory testing. We completed a programme of over 250 test calls. Fixing modem connection parameters to use the V.34 modulation protocol at a set bandwidth of 24 kbit/s improved connection stability and the reliability of the video-phone. In subsequent field testing 47 of 50 calls (94%) connected without problems. The freezes that did occur were brief (with greatly reduced packet loss) and had little effect on the ability to communicate, unlike the problems arising in the home testing. The low-bandwidth Internet-based video-phone we have developed provides a feasible means of doing telemedicine in the home.