The ventilator-dependent child: issues in diagnosis and management

Infants, children, and adolescents with chronic respiratory failure are surviving in increasing numbers and, thereby, producing a significant population of ventilator-dependent pediatric patients. Chronic respiratory failure can occur as a complication of a wide variety of disease states; in pathophysiologic terms, it generally results from either decreased central nervous system output or inadequate force generated by the respiratory pump. Its laboratory hallmark is hypercapnia with or without hypoxemia. Stabilization of the patient with mechanical ventilatory support may permit long-term survival. Management of the ventilator-dependent pediatric patient is a complex task that must begin with an accurate prognostication of each patient's survival and quality of life. Once a decision is made concerning the practicality and appropriateness of long-term ventilatory support, informed choices must be made with respect to need for an artificial airway, mode of ventilation, and location of care. Many younger patients, especially those with intrinsic lung disease (like bronchopulmonary dysplasia), may require a hospital setting for long-term care, whereas others with neuromuscular or central disorders may benefit from being discharged to home. The patient's family must be thoroughly educated in the child's care, and they must be involved in decision-making. A multidisciplinary team of physicians, therapists, nurses, and other professionals is required to deliver optimal care. Outcome is good for most patients who are carefully selected.     

Management guidelines for motor neurone disease patients on non-invasive ventilation at home

Most motor neurone disease (MND) patients die of respiratory system complications. When patients have advanced disease with symptoms of respiratory failure, management issues can become complicated by the introduction of assisted ventilatory devices. Therefore, care provision by a multidisciplinary team must be structured and co-ordinated in order to ensure that patients and their carers receive the optimal level of care. The objective of this article is to review the literature and explore the complex issues surrounding the use of non-invasive positive pressure ventilation (NIPPV) in home care MND patients as a justification for the development of a management guideline for medical practitioners. A guideline for multidisciplinary care of home ventilated MND patients will be proposed.     

Cost analyses of home care and nursing home services in the southern Taiwan area

This study compares the cost of long-term care provided at patient homes with that of long-term care provided in nursing homes in southern Taiwan. Caring for a patient with a high degree of dependence at home is more expensive than caring for a patient in a nursing home facility when family costs and provider costs are considered together. This phenomenon is not demonstrated for patients with medium degrees of dependence. To be cost-effective, home care services should target patients with medium physical disability, and nursing home care should focus on patients with high levels of dependence.     

Mechanical ventilation in the home

Despite advances in the application of mechanical ventilation as a short-term, life-saving technique, intensive care units are increasingly faced with patients who cannot be weaned from ventilatory assistance and who require mechanical ventilation as a long-term, life-supporting necessity. Because of limited resources in health care facilities for the management of chronic ventilator-assisted individuals, home care has become an important option. With careful selection of appropriate candidates, home care for ventilator-assisted individuals can result in not only decreased respiratory symptoms, reduction in hospitalization, and improved physiologic measures, but also an improved quality of life with substantial survival and a reduction in the costs of medical care.     

Stoma care nursing: what the community nurse needs to know

The transition from hospital to home can be a worrying period of time for a patient with a newly formed stoma. It is well documented that community care is important, however this transition has been seen as a weak link in the care for a patient with a stoma (Allison 1996). In most cases following discharge from hospital, the nurse specialist in stoma care will visit the patient at home as a means of maintaining continuity of care. It is also important that the patient's GP, district nurse and other relevant community services are introduced to ensure a cohesive approach to the patients care at home (Taylor, 2003). This article therefore aims to offer the community nurse an overview of stoma care nursing in order to provide the continuity of care much needed by this group of patients.     

Methodological and cultural challenges met in domiciliary care

The experiences, feelings and reflections of a team of home care nurses and doctors were collected with an informal interview, asking two simple questions: why are we working in home care? What are the differences between home and hospital care? Most nurses discover home care and the different role of the patient and the family at home. Communication and motivation are essential for an high quality of care. The involvement of the family that takes part to the care of the patient, often with a winder role than doctors and nurses, requires a different relationship and specific skills. The real epidemiology and story of home care can be described with numbers (of patients cared for, of their problems) but also with stories (perceptions, feelings, beliefs...) of people cared for and of the professionals that care for them.     

Predictors of home death in palliative care cancer patients

With recent changes in health care there is greater emphasis on providing care at home, including the support of families to enable more home deaths. Since a home death may not be practical or desirable in every family situation, there is a need for an objective way to assess the viability of a home death in each individual family situation. The purpose of this study was to describe the relative role of predictors of home death in a cohort of palliative care patients with advanced cancer. A questionnaire was created as a means of assessing the viability of a home death. Five questions were included. Ninety questionnaires were administered by home care coordinators. A follow-up questionnaire was administered to record the place of death. Of the 73 evaluable patients, 34 (47%) died at home and 39 (53%) died in hospital or hospice. The desire for a home death by both the patient and the caregiver, support of a family physician, and presence of more than one caregiver were all significantly associated with a home death. Logistic regression identified a desire for home death by both the patient and the caregiver as the main predictive factor for a home death. The presence of more than one caregiver was also predictive of home death. The questionnaire is simple and, if our results are confirmed, it can be used for predicting those who will not have a home death.     

Care of the ventilator-dependent patient: public policy considerations.

Because traditional cost-based reimbursement for acute hospital care has been replaced by the DRG system and other limited-payment approaches, hospital managers are seeking more cost-effective provision of care. This has shortened patient-stay periods in hospitals and increased demand for such alternatives as nursing home and private home care for chronically ill persons, including those dependent on ventilators. At the same time that hospitals seek to discharge patients earlier, patients themselves would prefer to remain in hospitals for long-term care because adequate financial coverage is not available to most of them for alternative-site care. In this setting of conflict between the financial policies of hospitals and those of Medicare and private insurance carriers, it is important to keep quality of care, not financial considerations, as the first consideration when a facility is chosen for long-term care. But the long-term patient, including the patient requiring ventilator support, is caught in the web of competing financial incentives and the fact that there is no consensus on how such care should be organized, delivered, or paid for. The only significant source of funding for long-term nursing home care is Medicaid, which requires the patient to give up his personal assets, including his home; this makes it nearly certain that he will always remain institutionalized. Private insurance carriers have not yet come to terms with the idea that long-term ventilator care can be made less expensive at sites other than hospitals--and thus many patients have no satisfactory answer to the problem of where to receive such care or how it can be financed.(ABSTRACT TRUNCATED AT 250 WORDS)     

Patient predictors of hospice choice. Hospital versus home care programs

Research findings indicate cost savings associated with home care hospices, while hospital-based hospices can be as expensive as conventional care. Based on National Hospice Study data, this article identifies the characteristics of patients admitted to hospital-based and home care hospices in those areas of the country where a choice of hospice model was possible. Multivariate logistic regression indicates that the significant discriminating factors between the two patient populations relate to the availability of supportive care at home and the severity of nursing care problems at the time of hospice entry. Reinforcing selected pre-existing differences, an examination of prehospice had longer episodes of care than was the case for home care hospice patients.     

Going home from ICU to die: a celebration of life

There is much literature regarding going home to die in terminally ill cancer patients however, little is written about withdrawing treatment at home in critical care. One intensive care unit's experience in New Zealand demonstrates how this can be done safely. The preparation of families and patients must be done with great care. There are challenges to be overcome including supportive resources in the community, staffing and safety of the patient and family. It is possible to withdraw/withhold treatment in a patient's home and this is highly valued by the families.     

Respiratory mechanics in the patient who is weaning from the ventilator

Ventilator management of the patient recovering from acute respiratory failure must balance competing objectives. On the one hand, aggressive efforts to promptly discontinue support and remove the artificial airway reduce the risk of ventilator-induced lung injury, nosocomial pneumonia, airway trauma from the endotracheal tube, and unnecessary sedation. On the other hand, overly aggressive, premature discontinuation of ventilatory support or removal of the artificial airway can precipitate ventilatory muscle fatigue, gas-exchange failure, and loss of airway protection. To help clinicians balance these concerns, 2 important research projects were undertaken in 1999-2001. The first was a comprehensive evidence-based literature review of the ventilator-discontinuation process, performed by the McMaster University research group on evidence-based medicine. The second was the development (by the American Association for Respiratory Care, American College of Chest Physicians, and Society of Critical Care Medicine) of a set of evidence-based guidelines based on the latter literature review. From those 2 projects, several themes emerged. First, frequent patient-assessment is required to determine whether the patient needs continued ventilatory support, from both the ventilator and the artificial airway. Second, we should continuously re-evaluate the overall medical management of patients who continue to require ventilatory support, to assure that we address all factors contributing to ventilator-dependence. Third, ventilatory support strategies should be aimed at maximizing patient comfort and unloading the respiratory muscles. Fourth, patients who require prolonged ventilatory support beyond the intensive care unit should go to specialized facilities that can provide gradual reduction of support. Fifth, many of these management objectives can be effectively carried out with protocols executed by nonphysicians.     

Home health care--providing a missing link

1. If nurses are to provide the continuity of care that helps patients at home achieve expected patient outcomes, nurses must diagnose actual and potential health problems and design a plan of care. 2. Before patient outcomes can be identified, nurses must first recognize, assess, and describe the patient's defining characteristics. 3. The study found that nurses use a limited range of nursing diagnoses and incompletely document the care they give. 4. Results of the study indicated that nurses provide continuity of care between the hospital and home; there is also a need for home-based health care to provide support for elderly caregivers whose health is less than good.     

Advanced home care: patients' opinions on quality compared with those of family members

Background. Advanced medical care in the patient's home setting is becoming more common. Many of the patients who receive this kind of care have severe illnesses and are unable to respond to questions about the quality of care. The research question was: are the patients’ opinions congruent with those of family members? Aim. To explore and compare the relationship between patients’ perception of the quality of care and close family members’ perception of this care as well as their perception of the patients’ perception. Methods. Sixty‐seven patients receiving advanced home care, 82 family members (54 matched patient + family member pairs) participated. Data were collected using a short version of the quality from the patient's perspective questionnaire modified to advanced home care. Results. A high degree of perceptual congruence was found between patients and their family members. The similarity was also high between family members’ own opinion and their appraisal of how the patient perceived the care. A subgroup of family members who met the patient once a week or less often deviated from this pattern. Conclusion. Patients’ views on the quality of care are congruent with the opinions of family members if they meet every day (live together) and share the same everyday and care‐related experiences. The results can be understood in the light of empathic accuracy theory. Relevance to clinical practice. The findings of this study have important implications for clinical nursing practice. Family members’ perception of the quality of care may be a valuable data source for nurses in the case of advanced home care if the patient and family member share the same everyday, care‐related experiences, otherwise family members’ perception tend to be more critical than those of the patients themselves.     

Home care nursing: professional and political issues

Concern for quality, cost, and access dominate the health care system in the eighties. State and national actions, demographic changes, and technological advances are converging to create many changes in the home care delivery system. Knowledgeable nurses can influence the evolution of home care services to assure that patients receive appropriate acute and long term home care services. Concern for quality care, changing patient needs, and availability of care are the major issues facing home care nursing in the eighties, and will continue to be into the nineties. Reimbursement policies of third party payers, medicare/medicaid regulations, state licensing, employer benefit programs, state health programs, home health care providers, professional/trade associations, and consumer advocacy groups are some of the key forces reshaping the practice of home health nurses. Knowledge of these factors will enable nurses to influence effectively the design of institutional and governmental policies which affect the care nurses deliver to patients at home.     

Patients in 24-hour home care striving for control and safety

ABSTRACT: BACKGROUND: This article concerns Swedish patients receiving 24-hour home care from health care assistants (HC assistants) employed by the municipality. Home care is a complex interactive process involving the patient, family, HC assistants as well as professional care providers. Previous studies exploring patient perspectives on home care have been based mainly on patient interviews. In contrast, the present study took a broad perspective on patients' experiences and thoughts by combining field observations on care situations with patient and HC assistant interviews. The aim of the study presented in this article was to promote a new and broadened understanding of patients receiving 24-hour home care by constructing a theoretical model to illuminate their main concern. METHODS: Field observations and semi-structured interviews were conducted with four patients receiving 24-hour home care and their HC ssistants. Grounded theory methodology was used. RESULTS: The core process identified was Grasping the lifeline, which describes compensatory processes through which patients strived for control and safe care when experiencing a number of exposed states due to inadequate home care. Patients tried to take control by selecting their own HC assistants and sought safe hands by instructing untrained HC assistants in care procedures. When navigating the care system, the patients maintained contacts with professional care providers and coordinated their own care. When necessary, a devoted HC assistant could take over the navigating role. The results are illuminated in a theoretical model. CONCLUSIONS: The results accentuate the importance to patients of participating in their own care, especially in the selection of HC assistants. The model illustrates some challenging areas for improvement within the organisation of 24-hour home care, such as personnel continuity and competence, collaboration, and routines for acute care. Furthermore, it may be used as a basis for reflection during the planning of care for individual patients within home care.     

Respiratory therapies in the critical care setting. Should every mechanically ventilated patient be monitored with capnography from intubation to extubation?

One of the most important aspects of caring for a critically ill patient is monitoring. Few would disagree that the most essential aspect of monitoring is frequent physical assessments. Complementing the physical examination is continuous monitoring of heart rate, respiratory rate, and blood oxygen saturation measured via pulse-oximetry, which have become the standard of care in intensive care units. Over the past decade one of the most controversial aspects of monitoring critically ill patients has been capnography. Although most clinicians use capnography to confirm endotracheal intubation, few clinicians use continuous capnography in the intensive care unit. This article reviews the medical literature on whether every mechanically ventilated patient should be monitored with capnography from intubation to extubation. There are numerous articles on capnography, but no definitive, randomized study has even attempted to address this specific question. Based on the available literature, it seems reasonable to use continuous capnography, for at least a subset of critically ill patients, to ensure integrity of the endotracheal tube and other ventilatory apparatus. However, at this point definitive data are not yet available to clearly support continuous capnography for optimizing mechanical ventilatory support. We hope that as new data become available, the answer to this capnography question will become clear.     

Providing outpatient antibiotic therapy for cellulitis in primary care

Outpatient parenteral antimicrobial therapy (OPAT) is becoming more widespread. OPAT therapy can be used to treat certain patients who have cellulitis. The decision as to which patients to treat at home must be based on local PCT guidelines--not all patients are suitable for OPAT. OPAT improves patient quality of life by delivering care in the patient's home. This is highly skilled work and the community nurse must have appropriate training and support in order to gain the skills required.     

Enhancing the role of case managers with specialty populations: development and evaluation of a palliative care education program

Palliative home care is an important component of the care system for patients at the end of life and case management is considered an essential element of the Canadian home care system. Case managers play a critical role in allocating resources, thus influencing the costs and the viability of palliative home care. Case management education programs focused on care coordination with specialty palliative care populations are nonexistent. An education program targeted at improving the knowledge and skills of case managers in allocating resources to palliative care populations was developed and pilot-tested in a metropolitan Canadian city home care program. Core curriculum was based on an initial learning needs assessment and used case-based problem solving to enhance case-management skills. An improvement in knowledge was noted on posttests and case managers described increased comfort and confidence in their role as case managers to this patient population. Home care organizations caring for palliative care populations must ensure case managers are prepared for case management roles with specialty populations if the home is to be rendered an appropriate and viable care setting for patients at the end of life.     

Coordinate My Care: A clinical approach underpinned by an electronic solution

Abstract

Coordinate My Care (CMC) is a clinical approach underpinned by an electronic solution. It puts the patient at the centre. All clinical care plans, advance care plans and patients wishes are central to a CMC record. The record can be accessed 24/7 by all legitimate health and social professionals caring for an individual patient, including the out of hours general practitioner (GP) services, 111 and the London Ambulance Service. Two-thirds of each week is out of hours; CMC provides an up-to-date record for patients at all times. The key to CMC is planning. Planning care avoids crises; avoiding crises results in fewer unnecessary hospital admissions. CMC enables more patients (82.4%) to die in their preferred place (home, care home, hospice) and fewer patients to die in hospital. CMC improves access of care to patients care homes and to patients with non-malignant diseases (55%).