"Caring as if it were my family": health care aides' perspectives about expert care of the dying resident in a personal care home.

OBJECTIVE: A qualitative pilot study was conducted to identify and describe expert behaviors in care of the dying resident in a personal care home setting from the perspective of health care aides (N = 5) nominated by their peers as demonstrating excellence in end-of-life care. METHODS: Data was collected through audio-taped semi-structured interview, and transcribed verbatim using constant-comparative analysis procedures. RESULTS: The over-arching theme emerging from the data was "caring as if it were my family." Subsumed within this main theme included the sub-themes of: (1) care of the resident; (2) tending to the environment; (3) care of the family; (4) going to bat; and (5) processing loss. SIGNIFICANCE OF RESULTS: The findings from this pilot study provide preliminary empirical evidence that could inform educational programs for and performance evaluation of, health care aides providing end-of-life care in personal care home environments.

The palliative medication kit: an effective way of extending care in the home for patients nearing death.

OBJECTIVE: Palliative medication kits for home use were developed in order to extend the period of time terminally ill patients might be cared for in their homes. DESIGN: Kits containing medications that could be used when the oral route was lost, targeting common symptoms that result in hospital admissions, were placed in homes of terminally ill patients. SETTING: Regional health authority, urban setting, community-based palliative care. POPULATION: Patients receiving care in the community, anticipated to die within the next 2 weeks and wishing to be cared for at home as long as possible. INTERVENTION: Kits were used when patients were experiencing symptom escalation or crisis, and the drugs to manage these were otherwise not available. Community palliative care nurses recommended when to open the kit and received verbal orders from the supervising palliative care physician for the medications to be administered. MAIN OUTCOME MEASURES: Number of kits placed and opened and the prevalence of home death in those instances; the number of kits placed and not opened and the prevalence of home death in those instances. RESULTS: From 2002-2007, a total of 293 kits were placed in patients' homes and used. Two hundred fifty-eight patients (88%) died at home, compared to 24% who died outside of an acute care setting across the entire program (chi(2) = 579.71; p < 0.0001). In 2006-2007, 73 kits were placed but not used. Forty-four patients (60%) died at home, compared to a program home death rate of 27% (chi(2) = 60.70; p < 0.0001). CONCLUSIONS: Palliative medication kits are a simple and effective way of anticipating and addressing comfort and symptom control for dying patients being cared for in the community. These kits can avert institutional crisis admissions, extend the period of time patients can be cared for in their homes and may increase the likelihood of a home death.

Pediatric palliative care online: the views of health care professionals.

The purpose of the study was to evaluate the role of an online resource for dying children, their family members, and health care providers from the perspective of pediatric palliative care experts. Semistructured interviews with 12 leaders in pediatric palliative care in North America were conducted, exploring their perceptions and attitudes towards various aspects of Web-based resources for dying children and their care providers. Informants felt that an online resource may allow for a different form of expression, a connection between people undergoing a rare event, and an increase in education and support. Major challenges, such as accessibility, monitoring, and remaining current, would be ongoing. Other key themes included access, information, and anonymity. The data suggest that developing Web-based resources for dying young patients and their families may have merit. Should this take place, a feasibility study will be necessary to further determine the value of such a Web site for these vulnerable populations.

Clinical nurse specialists in a Web-based practice environment.

The clinical nurse specialists working with the Canadian Virtual Hospice (CVH) are web-based, advanced practice palliative care nursing consultants. They deal with the complexities and challenges of online communication, particularly as it relates to the sharing of information about palliative and end-of-life care with lay people and health-care professionals alike. These nurses possess a number of highly developed skills--in communication, use of evidence-based research, teaching and understanding health-care systems--that enable them to respond to questions posed by visitors to the "Ask A Professional" section of the CVH website. Although the website is administratively based in Winnipeg, Manitoba, the services of the CNSs are available to people across Canada. In this article, the authors describe how the elements of advanced practice operate within this unique delivery model.

The challenge of providing palliative care in the nursing home part II: internal factors.

Nursing homes are increasingly becoming the place of care and site of death for growing numbers of frail older people dying of chronic progressive illnesses. Despite this increase, empirical evidence suggests that providing palliative care in nursing homes is replete with challenges. In a previous publication, the authors examined challenges external to the nursing home that influence the provision of palliative care, and which may be beyond the nursing home's control (Wowchuk et al, 2006). This paper reviews the primary internal factors identified in the literature that affect the provision of palliative care and are, to some extent, under the nursing home's control. The internal factors include: i) lack of care provider knowledge about the principles and practices of palliative care; ii) care provider attitudes and beliefs about death and dying; iii) staffing levels and lack of available time for dying residents; iv) lack of physician support; v) lack of privacy for residents and families; vi) families' expectations regarding residents' care; vii) hospitalisation of dying residents. Suggestions for practice, education and research are provided.

The challenge of providing palliative care in the nursing home: part 1 external factors.

One impact of the baby boom generation and improved medical care is that nursing homes will be the place of care and site of death for growing numbers of frail, older persons dying of chronic progressive illnesses. The nursing home settings may appear to be an appropriate environment wherein residents could receive palliative care, but the literature suggests that provision of such care is replete with challenge. Some of these challenges are external to the nursing home environment and are beyond the setting's control, others have internal origins and to some extent may be under the home's control. In part I of this two-part article, we review and critically analyse the primary external factors identified in the literature -- characteristics of the residents -- as they impact on the ability of care homes to deliver palliative care.