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.     

Exploring the experience of dignified palliative care in patients with advanced cancer and families: A feasibility study in Singapore

Abstract

Dignity is an important concept in palliative care. Yet, the concept is ambiguous and there does not seem to be agreement on how care can be delivered that preserves dignity at the end of life. The aim of the study was to conduct a feasibility study to explore the experience of dignity in palliative care in Singapore. We conducted qualitative interviews with four patients with advanced cancer and their primary family caregiver from a local largest home hospice service. The preliminary findings showed that the experience of dignity in Singapore context consists of three factors, which reflected 12 themes. These are (1) social factor, which comprised of family, friends, relatives, and employers; (2) organizational factor, which comprised of the healthcare system, voluntary welfare organization, and private sector, and (3) spiritual factor, which was associated with existential values, cultural and religious belief systems of the patients, and their families. The preliminary findings suggest similarity to the Western findings: dignity can be preserved by holistic care that focuses on psychosocial, physical, and spiritual aspects. In addition, dignified patient care should encompass the knowledge and sensitivity to the multi-cultural and multi-ethnic practices and health beliefs of the patients and their families. In conclusion, the preliminary findings suggest that using systems perspective, it is feasible to conduct a study to develop an empirical model on dignified palliative care in the Singapore context.     

The last days of life of nursing home patients with and without dementia assessed with the palliative care outcome scale

The aim of this study was to assess the Palliative care Outcome Scale (POS) for terminally ill nursing home (NH) patients in the Netherlands. METHODS: A prospective observational study of patients with a life-expectancy of six weeks or less in 16 Dutch NHs. NH staff rated the patient characteristics and measured palliative care with the POS, including items on physical, psychosocial, informational, spiritual and practical aspects. RESULTS: POS nonscores (not applicable; unknown) were mainly found in the psychosocial and spiritual domains, particularly in patients with dementia. Mean scores for non-demented patients and patients with dementia were favourable for the majority of the POS items. CONCLUSION: According to the NH staff, fairly good quality care was provided, but the psychosocial and spiritual aspects of care need to be addressed more in the last days of the dying NH patient's life. The results indicate that the POS is an appropriate instrument to assess not only cancer patients, but also non-cancer and (moderately) severely demented patients.     

A model of palliative care: the palliative medicine program of the Cleveland Clinic Foundation

 Patients with advanced diseases, both cancer and noncancer, experience high symptom prevalence and psychosocial distress. Multiple unmet needs in the physical, psychosocial and spiritual domains are common. In the United States, palliative medicine is an emerging discipline that focuses on meeting these needs to achieve optimal quality of life for the patient–family unit. The majority of palliative care programs in the U.S. are consultation based. In contrast, the Palliative Medicine Program of the Cleveland Clinic Foundation offers multidisciplinary, comprehensive care from a primary or a consultative focus. The program has clinical, research, and educational components. Established as a consultation service in 1987, the clinical component now includes inpatient and outpatient consultation services, a dedicated acute care inpatient hospital unit, outpatient palliative medicine and cancer pain clinics, palliative home care, hospice home care and hospice residential care. Over 800 new patient consultations took place in 1997. In this paper, development of the program and its structure are described. Challenges to effective communication in a large program within a tertiary care institution are discussed, and strategies designed to meet these challenges are presented. Published online: 29 May 2000     

Exploring terminally ill patients' and their families' perceptions of holistic care in Malaysia

AIM: To document the perception of terminally ill patients and their family members on the care provided to them, and to look at the components of holistic care that are viewed as inadequate. METHODS: Thirty cancer patients from a 10-bed palliative ward and their family members who were the chief carers were interviewed. They were asked to give their perceptions on four major areas of care: physical, social, psychological and spiritual. The participants were asked to report which area(s) of the service were inadequate. RESULTS: Most patients and family members perceived that they received adequate physical care. However, the psychosocial and spiritual aspect of care were perceived as inadequate by the majority of patients and their families. None of the patients interviewed had ever been asked about spiritual distress. CONCLUSION: The holistic model of care in caring for terminally ill patients is not practised fully. Further development in the psychosocial and spiritual aspects of care is necessary. There is a need to conduct further research to address these domains.     

The future of palliative care nursing research in Australia

Nursing research in palliative care is becoming more important as cost effectiveness and evidence-based practice are becoming mandatory. Fifty-nine published and unpublished projects relating to nursing research on palliative care in Australia between 1990 and 1996 were reviewed. Findings indicated that nurses working in palliative care in Australia are interested in researching a range of topics using varied methods. The nurses' primary interests appear to be their own professional issues and management of the patient's pain. Little research on families/carers of palliative care patients was evident. There is a need for future research to focus on projects that justify the nurse's role in the palliative care team, show that nursing interventions for symptom control affect patient outcomes and prove nurses are integral to the psychosocial and spiritual wellbeing of the patient and family during the palliative care journey.     

What is palliative care in Germany? Results from a representative survey

The recent development of palliative care inpatient units in Germany has been impressive. As a first step for quality assurance, a core documentation form was developed in 1996. The core documentation form consisted of 4 pages with 35 items documenting physical and psychosocial symptoms at the time of admission, diagnostic and therapeutic procedures before and during inpatient treatment, and outcome of physical and psychosocial dimensions. Checklists were used for most items and free text entries could be added. Of the 65 palliative inpatient units in Germany, 44 participated in the second phase of the evaluation of the core documentation in 2000. Eight units were affiliated with anesthesiology departments, 31 with internal medicine, two with radiotherapy, 1 with a surgical department, and 2 units were not affiliated with a department of the hospital. A total of 1087 patients were assessed in the 44 units during a period of up to 3 months. There was a high variability between units in all checklist items of the core documentation. Compared to units affiliated with internal medicine departments, units affiliated with anesthesiology departments performed less chemotherapy, but more immunotherapy; gave fewer infusions and blood transfusions but more skin and wound care, and more lymphatic drainage and massage; and documented psychosocial interventions more frequently for patients as well as for relatives. In one-third of the patients, a consent for omission of therapeutic options was documented. Inpatient treatment ended with the death of the patient in 45.3% of patients and with discharge in 51.6% (not documented 3.1%). The efficacy of inpatient treatment was rated very high by the staff. In conclusion, we found large variation in the documentation pertaining to palliative care patients at the time of admission, as well as for inpatient treatment, among palliative care units in Germany. This was related to the affiliation of the units at least to some degree, but also to differences in interests and documentation discipline. We suggest that training procedures for documentation should be included in crossectional surveys, as the results may not be comparable otherwise. However, common documentation instruments may be the first step towards an interdisciplinary discussion on aims and methods in palliative care.     

Addressing spirituality in pediatric hospice and palliative care

Hospice and palliative care principles mandate clinicIans to provide "total" care to patients and their families. Such care incorporates not only physical, emotional, and psychosocial care, but spiritual care as well. Even though considerable attention has been directed to spiritual issues for adult patients in hospice and palliative care, spirituality in pediatric palliative care has been virtually neglected. The need for guidelines to assess spirituality in this population was identified as a priority issue by members of a subcommittee of the Children's International Project on Children's Palliative/Hospice Services, created under the auspices of the National Hospice Organization. Committee members, based on their clinical, research, and personal experiences, identified several aspects relevant to spirituality in general, and to spirituality in pediatric palliative care in particular, and developed guidelines for clinicians in pediatric palliative care. The purpose of this paper is to share the results of this committee's work and, in particular, to present their guidelines for addressing spiritual issues in children and families in pediatric hospice and palliative care.     

Palliative care: an evolving field in medicine

Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems: physical, psychosocial, and spiritual. This article discusses illness trajectories and prognostic estimates, prognostic tools, educating physicians and nurses in palliative care, research in palliative medicine, and palliative care in hospitals and the community.     

The assessment of nursing care needs in cancer patients

In order to explore the status quo of the assessment of nursing care needs in newly admitted inpatients on oncology wards a survey in a German university hospital was carried out. Research questions included: Do the nurses collect data regarding nursing care needs of admitted cancer patients? When are the data collected? What data are collected? What is documented, when is it documented, and is the patient involved in the documentation? What, if any, factors on the part of nurses have an impact on the way in which these data are collected? Two methods were used to collect research data: nursing documents of hospitalised cancer patients were analysed (n = 68), followed by an interview with the nurses (n = 81). Beforehand, an instrument was developed and tested for both investigative methods. The main result was: the nurses' perception of the needs' assessment was incongruent with data in the patients' documentation files. The study showed that nurses consider their documentation of nursing care needs to be more comprehensive with regard to the time and content/areas of documentation than it actually is. With regard to the psychological, social, and spiritual care needs, for example, this means: in the nurses' own opinion, they had taken into account these needs far more strongly than they actually had. According to the analysis of the care documents, patients were involved in the documentation in 15% of the cases. According to the nurses, general communication skills, the use of assessment instruments, and the standardisation of the documentation need to be improved. The review of international literature confirms the deficiency recorded by this survey. The oncology patients' perspective should be included more strongly in the assessment of nursing care needs. In this way, individual nursing care needs are assumed to be understood more appropriately. Self-assessment instruments could be a suitable resource in this context. The instruments have to be introduced by education, and their validity, reliability, practical relevancy, and applicability need to be checked continuously.     

Holistic models for end of life care: Establishing the place of culture

Abstract

Introduction

This article presents a holistic model for clinical palliative care and research which expands and improves previous models by fully recognizing the place of culture in illness.

Methods

Literature review and philosophical enquiry.

Results

Holistic models of patient care are essential to the practise of patient-centred care. However, these models have up to now largely neglected the role of culture and the search for meaning in the illness experience, despite evidence of disparities in the access of palliative care services by people from ethnic minority groups. A phenomenological approach to illness highlights three principles: that illness is cultural, that the search for meaning related to the finitude of human life is fundamental to the illness experience, and that illness narratives are culturally conditioned manifestations of the search for meaning in illness. A holistic model for palliative care is presented on the basis of these principles.

Discussion

A holistic model that recognizes the place of culture in illness has implications for clinical practice, service development, and training. We propose an agenda for research into cultural and spiritual aspects of care on the basis of the model, including the formulation and evaluation of service models that take into account cultural features of illness and meet patients’ needs for support with finding meaning.     

Negotiating realistic and mutually sustaining nurse-patient relationships in palliative care

Barthow C. International Journal of Nursing Practice 1997; 3: 206–210
Negotiating realistic and mutually sustaining nurse–patient relationships in palliative care
This paper uses a literature review to question the proposition that nurses will be permitted to care for the psychosocial and spiritual needs of patients in the manner that is frequently presented as the nurses role. Second, it will explore qualities in nurse-patient relationships that can be not only helpful to those who are cared for but also can be a mode of sustenance to the nurse. Issues explored are the social construction of the nurse–patient relationship, reality checking, balancing emotional and cognitive functions in nursing, focus of nursing commitment, power issues, reciprocity and boundaries. Palliative care nursing will be referred to in relation to these themes as it is an area of nursing which highlights the increasing focus on psychosocial care. For this reason questions of what is realistic and sustainable for the nurse are of prime importance.     

Intercultural palliative care: do we need cultural competence?

Recognition of the importance of 'cultural competence' is now central to health care policy and to nurse education and training across the international spectrum. Detailed engagement with models of cultural competence is comparatively recent in palliative care nursing. This article presents the findings from a development project on elders and carers from 'minority ethnic' groups, funded by the Department of Health, to increase awareness of palliative care and to improve understanding of the needs of these groups of service users. The article describes the experiences of nurses involved in the delivery of palliative care who were interviewed in focus groups as a part of the project. It draws attention to the complicated relationships between cultural knowledge and practice and to the non-rational and visceral dimensions of intercultural care. These aspects of nursing are marginalised in current approaches to cultural competence, which emphasise the rational acquisition and application of cultural knowledge and skills by practitioners. It is suggested that recognition of these marginalised experiences can contribute to the development of new approaches to intercultural nursing that are also more attuned to the ethos and values of palliative care.     

Nonpain symptom management.

Excellent symptom management is paramount in palliative care. Without it, the individual patient will be unable to focus appropriately on other issues of concern, including those of a psychosocial, emotional, or spiritual nature. This article reviews current pharmacologic and nonpharmacologic interventions for symptoms commonly encountered in palliative care. These symptoms are organized into gastrointestinal, respiratory and neuropsychiatric categories.     

Instruments for assessing quality of life in palliative care settings

Quality of life is an outcome that is particularly important during palliative care. However, in order to measure this outcome, it is necessary to have a valid and reliable measure. The purpose of the article was to identify and describe quality of life measures that are appropriate for use in palliative care settings. Characteristics that are believed to be critical for quality of life instruments include the following. The instrument should: (1) be multidimensional; (2) provide self-report data; (3) be useful in the setting in which it is to be used; (4) be valid and reliable for use in palliative care settings. The five scales described measure a variety of dimensions including physical, psychological, social, spiritual, existential, support, symptoms and functional aspects of quality of life. All but one are self-report instruments. All have evidence of validity and reliability for use with palliative care populations.     

The challenge of providing holistic care in a viral epidemic: opportunities for palliative care

OBJECTIVE: To determine, using the perspective of a hospital-based palliative care service (PCS), the spiritual and psychosocial impact of a novel and potentially fatal viral epidemic on patients, their families and health care workers. DESIGN: Qualitative study using semi-structured interviews. The data were analysed using the constant comparative method and were validated using respondent validation. PARTICIPANTS: Eight palliative care workers. SETTING: Tan Tock Seng Hospital (TTSH), the hospital designated to manage all cases of Severe Acute Respiratory Syndrome (SARS) in Singapore. RESULTS: Disease containment resulted in isolation, where isolation meant the disruption of connectedness. This disruption of connectedness took place at multiple levels: in the patient himself, between the patient and the family, within the family, between the patient and the health care worker, between the patient and society, and between health care workers. As the nature of the disease was uncertain, prognostication was inaccurate. This created difficulties in helping patients and their families prepare for death. The fear of facing the unknown led to safety-seeking behaviours, which could be overcome by repeated exposure to the feared situation. The process of bereavement was disturbed, as traditional death rituals could not be performed by the family. Informants perceived themselves to be suffering as they suffered the same anxieties, fears and grief as the patient. CONCLUSIONS: Dealing with a novel viral epidemic creates spiritual and psychosocial issues similar to those encountered in a palliative care practice. Palliative care workers would do well to be aware of such issues and act proactively when such epidemics arise.     

The measurement of spirituality in palliative care and the content of tools validated cross-culturally: a systematic review

ContextDespite the need to assess spiritual outcomes in palliative care, little is known about the properties of the tools currently used to do so. In addition, measures of spirituality have been criticized in the literature for cultural bias, and it is unclear which tools have been validated cross-culturally.ObjectivesThis systematic review aimed to identify and categorize spiritual outcome measures validated in advanced cancer, human immunodeficiency virus (HIV), or palliative care populations; to assess the tools’ cross-cultural applicability; and for those measures validated cross-culturally, to determine and categorize the concepts used to measure spirituality.MethodsEight databases were searched to identify relevant validation and research studies. An extensive search strategy included search terms in three categories: palliative care, spirituality, and outcome measurement. Tools were evaluated according to two criteria: 1) validation in advanced cancer, HIV, or palliative care and 2) validation in an ethnically diverse context. Tools that met Criterion 1 were categorized by type; tools that also met Criterion 2 were subjected to content analysis to identify and categorize the spiritual concepts they use.ResultsOne hundred ninety-one articles were identified, yielding 85 tools. Fifty different tools had been reported in research studies; however, 30 of these had not been validated in palliative care populations. Thirty-eight tools met Criterion 1: general multidimensional measures (n = 21), functional measures (n = 11), and substantive measures (n = 6). Nine measures met Criterion 2; these used spiritual concepts relating to six themes: Beliefs, practices, and experiences; Relationships; Spiritual resources; Outlook on life/self; Outlook on death/dying; and Indicators of spiritual well-being. A conceptual model of spirituality is presented on the basis of the content analysis. Recommendations include consideration of both the clinical and cultural population in which spiritual instruments have been validated when selecting an appropriate measure for research purposes. Areas in need of further research are identified.ConclusionThe nine tools identified in this review are those that have currently been validated in cross-cultural palliative care populations and, subject to appraisal of their psychometric properties, may be suitable for cross-cultural research.