Challenges to end of life care in the acute hospital setting

BACKGROUND: Research exploring patients' care and treatment preferences at the end of life (EOL) suggests they prefer comfort more than life-extension, wish to participate in decision-making, and wish to die at home. Despite these preferences, the place of death for many patients is the acute hospital, where EOL interventions are reported to be inappropriately invasive and aggressive. AIM: This paper discusses the challenges to appropriate EOL care in acute hospitals in the UK, highlighting how this setting contributes to the patients' and families' care and treatment requirements being excluded from decision-making. METHODS: Twenty-nine cancer nurse specialists from five hospitals participated in a grounded theory study, using observation and semi-structured interviews. Data were collected and analysed concurrently using the constant comparative method. RESULTS: EOL interventions in the acute setting were driven by a preoccupation with treatment, routine practice and negative perceptions of palliative care. All these factors shaped clinical decision-making and prevented patients and their families from fully participating in clinical decision-making at the EOL.     

Self-administration of medication in hospital: patients' perspectives

BACKGROUND: Little information is available about patients' perspectives on self- or nurse-related administration of medication. AIM: The aim of the study was to determine patients' perspectives about self-medication in the acute care setting. METHODS: A qualitative approach, using in-depth semi-structured interviews, was taken. Ten patients with a chronic medical illness who had experienced multiple hospital admissions for treatment were interviewed about their experiences of medication administration in the acute care setting. Participants were recruited from two cardiovascular wards in a private, not-for-profit hospital in Melbourne, Australia. Data collection occurred between August and September 2002. FINDINGS: Four major themes were identified from the interviews: benefits of self-administration, barriers to self-administration, assessing appropriateness of self-administration and timing of medication administration. Seven participants had previously experienced self-administration of medications and six were in favour of this practice in the clinical setting. Nine managed their own medications at home, and one self-administered with some assistance from his family. Participants were very concerned about how nurses' heavily regulated routines affected delivery of medications in hospital and disrupted individualized plans of care maintained in the home setting. CONCLUSIONS: In planning and implementing self-administration programmes, it is important to consider patients' views. Medication regimes should be simple and flexible enough to adapt to patients' lifestyles and usual routines. Nurses should also take advantage of opportunities to support and facilitate patient autonomy, to enable more effective management of health care needs when patients return home.     

Transforming doctor-patient relationships to promote patient-centered care: lessons from palliative care

Palliative care was studied for its potential to yield lessons for transforming doctor-patient relationships to promote patient-centered care. Examination of patient and provider experiences of the transition from curative to palliative care promises valuable insights about establishing and maintaining trust as the goals of care shift and about addressing a broad spectrum of patient needs. The study was guided by a conceptual framework grounded in existing models to address five dimensions of doctor-patient relationships: range of needs addressed, source of authority, maintenance of trust, emotional involvement, and expression of authenticity. Data collection included observation of the care of 40 patients in the inpatient hospice unit and at home, interviews with patients and family members, and in-depth interviews with 22 physicians and two nurses providing end-of-life care. Standard qualitative procedures were used to analyze the data, incorporating techniques for maximizing the validity of the results and broadening their relevance to other contexts. Findings provide evidence for challenging prominent assumptions about possibilities for doctor-patient relationships: questioning the merits of the prohibition on emotional involvement, dependence on protocols for handling difficult communication issues, unqualified reliance on consumer empowerment to assure that care is responsive to patients' needs, and adoption of narrowly defined boundaries between medical and social service systems in caring for patients. Medical education can play a role in preparing doctors to assume new roles by openly addressing management of emotions in routine clinical work, incorporating personal awareness training, facilitating reflection on interactions with patients through use of standardized patients and videotapes, and expanding capacity to effectively address a broad range of needs through teamwork training.     

Parents and partners: lay carers' perceptions of their role in the treatment and care of adults with cystic fibrosis

BACKGROUND: Cystic fibrosis (CF) is the most common autosomal recessive genetic disease in Caucasian people, traditionally conceptualized as a condition whereby sufferers died in childhood. However, the current median survival age of 30 and a predicted median survival age of 40 for those born with the disease over the last decade ensure that families members will assist hospital staff with treatment and care well into most patients' adulthood. AIMS: This study explores the perceptions and experiences of lay care-giving amongst parents and partners of adults with CF who were being treated at a specialist CF centre in England. METHODS: Thirty-one relatives of adults with CF were interviewed in their own homes using an interview topic guide. All interviews were audiotape recorded and transcribed verbatim. Analysis of data was assisted by ATLAS-ti, a software package for qualitative research. FINDINGS: Two main themes surrounding lay carers' role in treatment and care were identified. Firstly, the notion of lay carers giving 'expert' care, both in hospital and at home was recognized. Parents' expertise was greater than that of partners until the patient required intensive hospital interventions, when partner expertise increased. Secondly, the degree of lay carers' felt inclusion in the hospital consultation appeared to depend on the nature of their relationship with the patient and the patients' health state. CONCLUSION: Lay carers are routinely performing tasks for adults with CF that were once the remit of trained nurses. Families need higher levels of nursing and social support when certain treatments are used at home. Attention needs to be directed to how lay carers of adult patients can be included in hospital consultations.     

Developing effective services for people with COPD

In terms of health care resources, chronic obstructive pulmonary disease (COPD) has long been the poor relation of other respiratory conditions such as asthma and lung cancer. However, over the last 10 years health professionals have recognised the importance of COPD and its cost to society and have been motivated to provide an improved service for patients. The first guidelines for the management of COPD were published by the British Thoracic Society in 1997. The Global Initiative for Chronic Obstructive Lung Disease followed this document with its Global Strategy for the Diagnosis, Management and Prevention of Chronic Obstructive Pulmonary Disease (2001).     

District nursing support for patients with cancer requiring palliative care

Patients with cancer spend the majority of the last year of life at home, with district nurses (DNs) as the main care coordinators and providers. However, there is a relative lack of empirical work on the DN role in this area. This study used qualitative, case-study methods to explore the role of district nurses caring for patients with cancer who require palliative care. The study focused on three patient cases and the researcher visited each patient with the DN on several occasions. The sample was three DNs and the principal data collection methods were episodes of participant observation (n=11) and in-depth interviews (n=12). The findings suggest that DN role was as linchpin or coordinator of palliative care at home. They were the main providers of physical and emotional support for the patients and families in this study. The supportive role of the DN involved referral to other agencies. Patient and carer preferences impacted on decision-making and care planning and reaching a compromise was often necessary.     

Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service

OBJECTIVE: To obtain feedback from families of children receiving palliative and supportive care about their care needs in hospital and in community settings. DESIGN: A two-phase combined quantitative and qualitative study. SETTING: Western Australia. PARTICIPANTS: 134 parents and 20 service providers. RESULTS: Analysis indicated the concept of palliative care is poorly understood by health professionals and by parents. Many families are affected emotionally, financially and physically by the burden of caring for children with life threatening or chronic conditions requiring complex care at home. Parents indicated the need for clear and honest information about their child's condition and prognosis throughout the trajectory of illness and perceived this had been lacking. Families required financial and practical assistance with providing care from their children at home. Parents also wanted more practical resources and information to assist with the management of their child's nutrition and pain, as well as support for their other children. The level of respite (in home and residential) was perceived to be insufficient and inequitable. Parents also required access to, and advice from, multidisciplinary health professionals when caring for their child at home. There was a perceived lack of coordination between community services and the hospital. CONCLUSION: Education of health professionals and parents regarding the concepts and introduction of palliative and supportive care is required. Care for children and their families should be coordinated by a multidisciplinary team in consultation with children and their families, and linked and integrated with the treating hospital in collaboration with community services. More inclusive criteria are required for community services including practical aids and respite care.     

Caring for patients with COPD and their families in the community

Community matrons have a key role to play in the management of patients with long-term conditions. With the expected increase in prevalence of Chronic Obstructive Pulmonary Disease (COPD), largely due to cigarette smoking, the management and care of patients with COPD is a priority for the NHS. This paper examines the current and future role of community matrons in the management of patients with COPD. Community matrons have a potential role in providing evidence based care and could fill a gap in the implementation of effective interventions to help patients and family members stop smoking. A family focused approach to assessment and case management are important to achieving quality care and management of these patients. Recommendations are made with respect to the improvement of service provision for individuals and families with COPD.     

Structured review: evaluating the effectiveness of nurse case managers in improving health outcomes in three major chronic diseases

Aim. This paper presents the findings of a review and appraisal of the evidence for the effectiveness of nurse case management in improving health outcomes for patients living either with Diabetes, Chronic Obstructive Pulmonary Disease or Coronary Heart Disease. Background. Long term chronic health conditions provide some of the greatest challenges to western health care systems. In the UK, three of the most significant chronic conditions are Diabetes, Chronic Obstructive Pulmonary Disease and Coronary Heart Disease. Patients with these long term conditions are high users of health services who often receive unplanned, poorly co‐ordinated, ad‐hoc care in response to an exacerbation or crisis. To counter this, the nurse case manager is identified as a central aspect of improving care for these patients. However, the evidence for the effectiveness of nurse case management in improving health outcomes for the chronically ill is scarce. Design. A structured review of the literature. Method. The review was undertaken focussing on studies that evaluated nurse case management with one or all of the three major long term chronic conditions. A total of 108 papers were initially reviewed and filtered to leave 75 citations that were appraised. About 18 papers were finally included in the review and subject to thematic analysis based on the health outcomes evaluated in the studies. Results. Significantly positive results were reported for nurse case management impact on five health outcomes; ‘objective clinical measurements’, ‘quality of life and functionality’, ‘patient satisfaction’, ‘adherence to treatment’ and ‘self care and service use’. Relevance to clinical practice. The evidence generated in this review suggests that nurse case managers have the potential to achieve improved health outcomes for patients with long term conditions. Further research is required to support role development and create a more targeted approach to the intervention.     

Terminal care costs in childhood cancer.

Purpose: To present a conceptualization of health care costs and to describe costs of health care in the terminal phase of childhood cancer. To present an exploratory comparison of the costs of terminal care in the hospital versus home care services, and to discuss the use of cost research in nursing practice. Method: Telephone interviews were done approximately 16 months after the death of a child to retrospectively ascertain services used, costs to the family, and insurance information. Provider billing and insurance data were subsequently collected. The families were divided into two groups based upon the use of home care or traditional hospital care during the terminal phase. Findings: Home care was less expensive for total costs than hospital care. Home care was more expensive for nonhealth care and indirect costs than hospital care. Conclusions: Nurses should consider direct health care costs, nondirect health care costs, and indirect costs when assisting family decisions about care. Nurses and families should be aware of potential cost shifting.     

Dying for attention: palliative care in the acute setting.

BACKGROUND: Palliative care has emerged as a specialist discipline in the past 25 years. However in relation to acute hospitals, a sense exists that patients who are receiving end of life care may not experience support which fully reflects appropriate palliative care management. OBJECTIVE: This study aimed to analyse the end of life care received by patients in the acute wards of a busy teaching hospital. DESIGN: Retrospective analysis using multiple methods including: case note auditing and interviews of key staff was used to determine the quality of end of life support provided to an opportunistic sample of patients who died in acute care wards. SETTING: The research site is a 250 bed teaching hospital in South Australia. SUBJECTS: A medical record audit using an opportunistic sample of 20 recently deceased patients from acute wards was used. For each patient, interviews were also conducted with two nurses (n = 40) selected on the basis of having a major care involvement. MAIN OUTCOME: A range of strategies for enhancing the end of life care for patients in acute wards were determined, including support for application of a Palliative Care Advanced Disease Pathway. RESULTS: The lack of appropriate assessment and documentation indicates that major opportunities for enhanced service provision exist both in relation to physical care and even more significantly in relation to psychosocial and spiritual care. CONCLUSIONS: The end of life care provided for patients reviewed in this study indicates a far from ideal situation in the acute hospital wards of the research setting. An eagerness from the nurse participants in the study for tools and further support in their practice was noted and augurs well for future developments within the research site.     

Advanced care planning: a study on home health nurses.

The purpose of this research was to assess home health nurses' (HHNs) knowledge, comfort levels, barriers, and personal participation in advanced care planning (ACP), a practice that recognizes patient preferences for health care treatment. Licensed nurses who identified home care as their primary area of practice (N = 519) were surveyed about their knowledge of laws governing ACP and their perceptions of patients' preferences for ACP. Most respondents were women (97%), and the average age of the respondents was 54 years. Most nurses felt knowledgeable and capable of educating patients on advance directives (ADs), although the nurses' knowledge of laws governing ACP was limited and often inaccurate. Generally, nurses felt comfortable during ACP discussions with patients and families. HHNs perceived patient or family reluctance as the greatest barrier hindering discussions of ACP. No association was found between level of education and whether a nurse had a personal AD. Twenty percent of the nurses had their valid personal AD. A greater knowledge base concerning ACP would facilitate HHN discussions with patients and families. Recognition of patient preferences can be enhanced by understanding and overcoming barriers that hinder discussions of ACP. Educational opportunities focusing on ACP are encouraged for all health care providers.     

Nurses and paramedics in partnership: perceptions of a new response to low-priority ambulance calls

AIMS: To explore patients' and staffs' perceptions of a pilot service which dispatched a nurse and paramedic to low-priority ambulance calls. However, METHODS: Patients' opinions of both pilot and standard service groups were obtained through qualitative questionnaire data and individual interviews. Staffs' perceptions were explored via two focus groups. Questionnaires were sent to a convenience sample of 128 patients attended by the pilot service and 128 patients receiving the standard service. Initially 19 questionnaire participants agreed to be interviewed. Focus group participants (n=11) included nurses and paramedics involved in the pilot service. RESULTS: Sixty-four questionnaires were returned and 11 interviews were conducted. Patients receiving the pilot service were enthusiastic about opportunities for care to be provided in their home. Involvement in the pilot service was a positive experience for staff. They felt confident in managing calls effectively because of their combined knowledge and skills, and believed that the quality of patient care had been improved. They also experienced increased job satisfaction and skills development. CONCLUSION: Both patients and staff expressed positive views about the pilot service. Patients appreciated being treated at home and staff believed that working together provided more appropriate care for patients and enhanced interprofessional development.     

Dilemmas in the provision of own-home respite support for parents of young children with complex health care needs: evidence from an evaluation

Dilemmas in the provision of own-home respite support for parents of young children with complex health care needs: evidence from an evaluation Aims. The aim of this article is to present some of the results of a qualitative evaluation of a United Kingdom (UK) nurse-led, home-based, respite service for the families of children under the age of five with complex health care needs. Background. Advances in neonatal medical and nursing care have contributed to a growth in the number of children who survive low birth weight, birth trauma, and various congenital anomalies. Many of these children are likely to have long-term care needs which will require innovative nursing responses. Of particular importance is the need for parental respite, given the added demands of caring for very ill children at home. Methods. A parent-centred, follow-up evaluation, using in-depth qualitative interviews with parents in 18 families consecutively referred to the Children's Outreach Service between April and December 1997. Findings. This evaluation reveals the sometimes mixed reactions of parents to this innovative service, and the equivocal evidence about its role in contributing to family well-being. We discuss, from the perspective of parents using the service, some of the dilemmas and problems in the provision of home-based respite support to this client group. In particular, we explore the diverse ways in which families talk about their need for respite support and point to the need for flexibility in this kind of service provision if these support needs are to be met. Conclusion. We conclude by discussing the practice implications of our evaluation for those planning similar services.     

A proactive approach to improve end-of-life care in a medical intensive care unit for patients with terminal dementia

OBJECTIVES: To compare usual care with a proactive case-finding approach for critically ill patients with terminal dementia using an inpatient palliative care service. DESIGN: Prospective comparison to historical control. SETTING: Urban, university-affiliated hospital. PATIENTS: Total of 52 men and women with end-stage dementia, 26 subjects in each control and intervention group. INTERVENTIONS: Proactive case-finding by the palliative care service was done to offer early assistance to the intensive care unit staff about the treatment of patients with terminal dementia. Results were compared with data obtained retrospectively. MEASUREMENTS AND MAIN RESULTS: Measurements included age, gender, Acute Physiology and Chronic Health Evaluation Score, Therapeutic Intervention Scoring System, mortality, intensive care unit and hospital lengths of stay, frequency, timing, and goals of do-not-resuscitate orders. The proactive, case-finding approach decreased hospital and medical intensive care unit length of stay. More important, a proactive palliative intervention decreased the time between identification of the poor prognosis and the establishment of do-not-resuscitate goals, decreased the time terminal demented patients remained in the intensive care unit, and reduced the use of nonbeneficial resources, thus reducing patient burden and the cost of care while having the potential to afford the patient and family increased comfort and psychoemotional support. CONCLUSIONS: Proactive interventions from a palliative care consultant within this subset of patients improved end-of-life care and decreased use of superfluous resources.     

Promoting physiologic-physical adaptation in chronic obstructive pulmonary disease: pharmacotherapeutic evidence-based research and guidelines

Guidelines from the Global Initiative for Chronic Obstructive Lung Disease (GOLD) and evidence-based research include advanced pharmacologic care for patients with chronic obstructive pulmonary disease (COPD). Although clinical trials of medications have not supported evidence that long-term decline in pulmonary function can be prevented, pharmacologic agents can reduce symptoms and prevent complications. High-quality home care services may improve quality of life and prevent hospital admissions because of acute exacerbations.