The use of anticholinergic agents to treat excessive oropharyngeal and tracheal secretions in palliative care

Palliative care involves a multi-professional team approach to the provision of active, holistic care for patients and their families when the patient's disease is no longer responsive to curative treatment. Patient care encompasses medical and pharmacological intervention for symptom control, together with psychological, spiritual and social support for patients and families. Care is provided by teams in hospice, hospital or community environments. Although traditionally associated with providing care for cancer patients, palliative care services are increasingly providing for patients with non-malignant disease. Symptoms commonly associated with terminal phase of disease include pain, nausea, agitation, respiratory symptoms and general fatigue. During the last few days of life, patients may become weak, resulting in difficulty taking oral medication and have periods of unconsciousness. Some patients may require drug administration via subcutaneous infusion. A proportion of patients may develop difficulty clearing respiratory secretions causing a characteristic ‘death rattle’, which although not generally considered to be distressing for the patient, is often treated with a variety of anticholinergic drugs in an attempt to reduce the ‘noisy breathing’ for the benefit of relatives and others who may be closely associated with the patient.This study examined treatment of death rattle in two Hospices focusing on objective and subjective outcome measures in order to determine the efficacy of anticholinergic regimens in current use. Qualitative methods were employed to elicit attitudes of professionals and carers working closely with the patient. The number of patients recruited and monitored were small, many confounding factors were identified which questioned firstly the clinical rationale for administering anticholinergic drugs routinely to treat death rattle and secondly, the ethics of administering drug regimens to patients to treat death rattle with the primary aim of relieving distress for others. Ethnical issues, including those of consent are discussed in relation to their impact on the methodology of end of life studies in medicines management in palliative care.

Set-up and maintenance of syringe drivers for subcutaneous drug administration in palliative care

Focal points: Details of syringe driver use were collected from 11 inpatient hospice units in the West Midlands and compared with predetermined standards set by a multidisciplinary group We recorded 294 syringe driver events which complied with standards for the choice of administration site, protection of the syringe driver from light and the reason for initiation of the infusion Issues of nurse training, variability in prescribing practices, provision of written information for patients, labelling and documentation of the diluent used were all identified as areas in which compliance with standards could be improved

Beliefs and attitudes of nurses regarding visitation in the pediatric intensive care unit

The purpose of this study was to investigate the beliefs and attitudes of nurses regarding the effects of visitation in pediatric intensive care units (PICU).^ Questionnaires were used to gather data from nurses (n = 48) in four study sites. Data were analyzed according to the Theory of Reasoned Action.^ A predominant theme among the beliefs was that visitation should be individualized. It was found that PICU nurses have more positive attitudes regarding traditional visitation as opposed to open visitation (p $<$.01). Significant relationships were found between nurses' years of education and attitudes toward traditional (p $<$.01) and open (p $<$.05) visitation.^ In light of the literature suggesting the positive effects of open visitation, it appears that PICU nurses' attitudes may present a barrier when implementing open policies. Since years of education shows a positive correlation with nurses' attitudes, educational intervention may be helpful in overcoming this obstacle. ^

The influence of spirituality, race/ethnicity and religion on parent grief and mental health at one and three months after their infant's/child's death in the neonatal or pediatric intensive care unit

The death of an infant/child is one of the most devastating experiences for parents and immediately throws them into crisis. Spiritual and religious coping strategies may help parents with their loss. The purposes of this longitudinal study were to: (1) describe differences in bereaved parents' use of spiritual coping strategies across racial/ethnic and religious groups, mother/father dyads, and time—one (T1) and three (T2) months after the infant's/child's death in the neonatal (NICU) or pediatric intensive care unit (PICU), and (2) test the relationship between spiritual coping strategies and grief, mental health, and personal growth for mothers and fathers at T1 and T2. A sample of 126 Hispanic, Black/African American, and White parents of 119 deceased children completed the Spiritual Coping Strategies scale, Beck Depression Inventory-II, Impact of Events-Revised, Hogan Grief Reaction Checklist, and a demographic form at T1 and T2. Controlling for race and religion, spiritual coping was a strong predictor of lower grief, better mental health, and greater personal growth for mothers at T1 and T2 and lower grief for fathers at T1. The findings of this study will guide bereaved parents to effective strategies to help them cope with their early grief.

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™ Generic Core Module for child health and functioning, PedsQL™ 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.

End-of-life care: identifying an appropriate legal framework for specialist palliative care in Ireland

This thesis argues that the legal framework in Ireland for specialist palliative care is inadequate and consequently a more appropriate legal framework must be identified. This research is guided by three central research questions. The first central research question examines the legitimacy of the distinction between specialist palliative care and euthanasia. The second central research question asks what legal framework currently exists in Ireland for specialist palliative care. The third central research question examines an alternative legal framework for specialist palliative. This thesis is composed of seven chapters. The first Chapter is an introduction to the thesis and defines the terminology and the central research questions. Chapter Two explores the development and practice of palliative care in Ireland. Chapter Three examines the distinction in criminal law between specialist palliative care practices and euthanasia. Chapter Four examines the human rights framework for specialist palliative care. Chapter Five critiques the regulatory framework in Ireland for specialist palliative care. Having gained a thorough understanding of palliative care and the related legal framework, this thesis then engages in comparative analysis of the Netherlands which is used as a source of ideas for reform in Ireland. Chapter Seven is the concluding chapter and, in it, the main findings of this thesis are summarised. The main findings being that: the distinction between specialist palliative care and euthanasia is not sufficiently supported by justifications such as a double effect or the acts and omissions distinction, there is no clear decision-making framework in Ireland for specialist palliative care, and the current legal framework lacks clarity and does not promote consistency between providers of specialist palliative care. This Chapter also proposes that detailed professional standards and guidelines are likely to be the most appropriate way to effect individual and institutional change in the provision of specialist palliative care.

Hearing the Child's Voice: Their Lived Experience in the Pediatric Intensive Care Unit

Background: More than 200,000 children are admitted annually to Pediatric Intensive Care Units (PICUs) in the US. Research has shown young children can provide insight into their hospitalization experiences; child reports rather than parental reports are critical to understanding the child’s experience. Information relating to children’s perceptions while still in the PICU is scarce. Aims: The purpose of this qualitative study was to investigate school age children’s and adolescents’ perceptions of PICU while in the PICU; changes in perceptions after transfer to the General Care Unit (GCU); differences in perceptions of school age children/adolescents and those with more invasive procedures. Methods: Interviews were conducted in PICU within 24-48 hours of admission and 24-48 hours after transfer to GCU. Data on demographics, clinical care and number/types of procedures were obtained. Results: Participants were 7 school age children, 13 adolescents; 10 Hispanic; 13 males. Five overarching themes: Coping Strategies, Environmental Factors, Stressors, Procedures/Medications, and Information. Children emphasized the importance of peer support and visitation; adolescents relied strongly on social media and texting. Parent visits sometimes were more stressful than peer visits. Video games, TV, visitors, and eating were diversional activities. In the PICU, they wanted windows to see outside and interesting things to see on the ceiling above them. Children expressed anticipatory fear of shots and procedures, frustration with lab work, and overwhelming PICU equipment. Number of child responses was higher in PICU (927) than GCU (593); the largest difference was in Environmental Factors. Variations between school age children and adolescents were primarily in Coping Strategies, especially in social support. Number of GCU procedures were the same (8 children) or greater (2 children) than PICU procedures. Discussion: Admission to PICU is a very stressful event. Perceptions from children while still in PICU found information not previously found in the literature. Longitudinal studies to identify children’s perceptions regarding PICU hospitalization and post-discharge outcomes are needed.

A Prospective Randomized Controlled Trial to Study the Impact of a Nutrition-Sensitive Intervention on Adult Women With Cancer Cachexia Undergoing Palliative Care in India

Purpose. Advanced cancer patients with disease progression develop cachexia. Nevertheless, cancer patients at nutritional risk have shown improved body weight and quality of life with oral nutritional supplements. Method. This was a randomized controlled trial in adult female cancer patients (n = 63) attending palliative clinics, with symptoms of cachexia. Eligible patients were randomly distributed into control (n = 33) and intervention (n = 30) groups. Both groups were provided with nutritional and physical activity counseling, but the intervention group received an additional 100 g of Improved Atta (IAtta) for 6 months daily consumption. This study was designed to assess the efficacy of IAtta (with counseling) in enhancing the health status of cachexic patients. Anthropometric measurements, dietary intake, physical activity level and quality of life parameters were assessed at baseline, after 3 months, and at the end of 6 months. Results. Patients in the control group (n = 15) had significantly decreased body weight (P = .003), mid–upper-arm circumference (P = .002), and body fat (P = .002) by the end of intervention. A trend of body weight gain in the intervention group (n = 17; P = .08) and significant increase of body fat (P = .002) was observed; moreover, patients reported a significant improvement in fatigue (P = .002) and appetite scores (P = .006) under quality-of-life domains at the end of intervention. Conclusions. Embedding a nutrition-sensitive intervention ( IAtta ) within Indian palliative care therapy may improve quality of life and stabilize body weight in cancer cachexia patients.

Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol.

BACKGROUND:
Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is 'family centered', with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30-50% of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically. The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice.
METHODS:
Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4.
DISCUSSION:
The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease/care trajectory to provide a family meeting.

Moral Emotions in Palliative Care: Empirical Insights from Austria and Canada

Research aims: Moral emotions as one specific group of emotions play a vital role in delivering palliative care as e.g. ethical issues and moral distress belong to daily routine.
Moral emotions are oriented to the welfare of other persons or the society as a whole. To better understand moral emotions in Palliative Care the aims of the presented study are to ana- lyze care situations from Austria and Canada in different care settings and identify families of moral emotions on one hand and describe influencing contextual factors on the other hand. Methods: Within a qualitative study design a reanalysis of Austrian narratives on ethical issues and Canadian narra- tives on moral distress were conducted. Data in Austria encompass 36 narratives that were generated through qual- itative questionnaires in nursing homes. Canadian data are based on qualitative interviews with home care palliative specialists and encompass 47 critical incidents. The reanal- ysis of data was conducted with narrative analysis. Results: Preliminary results show that moral emotions in palliative care can be found in families around “empathy and relatedness”, “sadness, isolation and bereavement”, “anger, frustration and powerlessness”, “guilt and shame” and “being touched and feel close”. Contextual factors influencing moral emotions can be summarized as “suffer- ing and decline of client”, “expectations and dynamics of family”, “structural conflicts and power issues” and “lack of resources and information”.
Conclusion: The diversity of moral emotions reflects the everyday experiences in palliative care. It became obvious that most of the moral emotions that have been expressed appear to be interconnected within a bundle of other emo- tions. Contextual factors influencing moral emotions in pal- liative care are relatively independent of care settings. In Palliative Care moral emotions and their contextual factors constitute an important source of insight for reflection in organizational ethics.