Intensive care nurses' experiences with end-of-life care.

BACKGROUND: With much attention being focused on how patients die and whether or not they are provided appropriate care, the care of dying patients in intensive care units must be described and improved. OBJECTIVES: To describe end-of-life care in intensive care units as perceived by critical care nurses who have taken care of dying patients. METHODS: A semistructured interview guide was developed and revised after pretesting in a focus group of faculty clinicians with extensive, recent experience in intensive care. Four focus groups were held with randomly selected nurses from 4 intensive care units in 2 hospitals; participants had 2 years or more of experience and were working half-time or more. Tapes from each focus group were transcribed and reviewed by the investigators before the subsequent group met. Category labels were developed, and topics and themes were determined. RESULTS: "Good" end-of-life care in the intensive care unit was described as ensuring that the patient is as pain-free as possible and that the patient's comfort and dignity are maintained. Involvement of the patient's family is crucial. A clear, accurate prognosis and continuity of care also are important. Switching from curative care to comfort care is awkward. CONCLUSIONS: Disagreement among patients' family members or among caregivers, uncertainty about prognosis, and communication problems further complicate end-of-life care in intensive care units. Changes in the physical environment, education about end-of-life care, staff support, and better communication would improve care of dying patients and their families.     

Preferences and priorities for ongoing and end-of-life care: A qualitative study of older people with dementia resident in care homes

Background

The older person with dementia has a limited life expectancy and the dying trajectory can be protracted and unpredictable. For good end-of-life care, early communication, exploration of residents’ wishes, and identification of someone who can represent them, are important. In care homes the timing of these discussions, and who is involved is variable. Person-centred approaches to dementia care assume that people with dementia can actively participate in decisions about their lives. Less well understood is how this can inform end-of-life care decision making and complement information provided in advance care plans completed prior to, or at the point of admission to a care home.

Objectives

To explore how older people with dementia discuss their priorities and preferences for end-of-life care.

Methods

An exploratory, qualitative study that used guided conversations with 18 people with dementia, living in six care homes. Participants were asked about their life in the care home, their health, thoughts for the future, and wishes surrounding end of life. Data were analysed thematically.

Results

People with dementia's accounts of life in the care home, what they valued, and the impact of having dementia on how they participated in decision making, provided key insights into care preferences. Three linked themes that had relevance for thinking and talking about end of life were identified: “dementia and decision making”, “everyday relationships” and “place and purpose”. Older people with dementia's accounts of everyday experiences of care, key relationships with family and care home staff members and whether they accepted the care home as their home demonstrated what was important for them now and for the future.

Conclusion

For older people living with a diagnosis of dementia, the experience of living and dying in a care home is inextricably linked. End-of-life care planning and decision making by health care professionals, care home staff and family could be enriched by exploring and documenting the preoccupations, key relationships and wishes about everyday care of people with dementia.     

Exploring the quality of dying of patients with chronic obstructive pulmonary disease in the intensive care unit: a mixed methods study

Rationale for the study:  Improving the quality of end-of-life (EOL) care in critical care settings is a high priority. Patients with advanced chronic obstructive pulmonary disease (COPD) are frequently admitted to and die in critical care units. To date, there has been little research examining the quality of EOL care for this unique subpopulation of critical care patients.
Aims:  The aims of this study were (a) to examine critical care clinician perspectives on the quality of dying of patients with COPD and (b) to compare nurse ratings of the quality of dying and death between patients with COPD with those who died from other illnesses in critical care settings.
Design and sample:  A sequential mixed method design was used. Three focus groups provided data describing the EOL care provided to patients with COPD dying in the intensive care unit (ICU). Nurses caring for patients who died in the ICU completed a previously validated, cross-sectional survey (Quality of Dying and Death) rating the quality of dying for 103 patients.
Data analysis:  Thematic analysis was used to analyse the focus group data. Total and item scores for 34 patients who had died in the ICU with COPD were compared with those for 69 patients who died from other causes.
Results:  Three primary themes emerged from the qualitative data are as follows: managing difficult symptoms, questioning the appropriateness of care and establishing care priorities. Ratings for the quality of dying were significantly lower for patients with COPD than for those who died from other causes on several survey items, including dyspnoea, anxiety and the belief that the patient had been kept alive too long. The qualitative data allowed for in-depth explication of the survey results.
Conclusions:  Attention to the management of dyspnoea, anxiety and treatment decision-making are priority concerns when providing EOL care in the ICU to patients with COPD.     

Providing end-of-life care to patients: critical care nurses' perceived obstacles and supportive behaviors.

BACKGROUND: Critical care nurses care for dying patients daily. The process of dying in an intensive care unit is complicated, and research on specific obstacles that impede delivery of end-of-life care and/or supportive behaviors that help in delivery of end-of-life care is limited. OBJECTIVE: To measure critical care nurses' perceptions of the intensity and frequency of occurrence of (1) obstacles to providing end-of-life care and (2) supportive behaviors that help in providing end-of-life care in the intensive care unit. METHODS: An experimental, posttest-only, control-group design was used. A national, geographically dispersed, random sample of members of the American Association of Critical-Care Nurses was surveyed. RESULTS: The response rate was 61.3%, 864 usable responses from 1409 eligible respondents. The highest scoring obstacles were frequent telephone calls from patients' family members for information, patients' families who did not understand the term lifesaving measures, and physicians disagreeing about the direction of a dying patient's care. The highest scoring supportive behaviors were allowing patients' family members adequate time alone with patients after death, providing peaceful and dignified bedside scenes after death, and teaching patients' families how to act around a dying patient. CONCLUSIONS: The biggest obstacles to appropriate end-of-life care in the intensive care unit are behaviors of patients' families that remove nurses from caring for patients, behaviors that prolong patients' suffering or cause patients pain, and physicians' disagreement about the plan of care.     

Dying in Hospital: Medical Failure or Natural Outcome?

The purpose of this study was to describe patterns of medical and nursing practice in the care of patients dying of oncological and hematological malignancies in the acute care setting in Australia. A tool validated in a similar American study was used to study the medical records of 100 consecutive patients who died of oncological or hematological malignancies before August 1999 at The Canberra Hospital in the Australian Capital Territory. The three major indicators of patterns of end-of-life care were documentation of Do Not Resuscitate (DNR) orders, evidence that the patient was considered dying, and the presence of a palliative care intention. Findings were that 88 patients were documented DNR, 63 patients' records suggested that the patient was dying, and 74 patients had evidence of a palliative care plan. Forty-six patients were documented DNR 2 days or less prior to death and, of these, 12 were documented the day of death. Similar patterns emerged for days between considered dying and death, and between palliative care goals and death. Sixty patients had active treatment in progress at the time of death. The late implementation of end-of-life management plans and the lack of consistency within these plans suggested that patients were subjected to medical interventions and investigations up to the time of death. Implications for palliative care teams include the need to educate health care staff and to plan and implement policy regarding the management of dying patients in the acute care setting. Although the health care system in Australia has cultural differences when compared to the American context, this research suggests that the treatment imperative to prolong life is similar to that found in American-based studies.     

Quality Indicators of End-of-Life Cancer Care from the Bereaved Family Members' Perspective in Japan

Although several studies about quality indicators (QIs) in end-of-life (EOL) cancer care have been conducted, the bereaved family members’ perspective of QIs has not been investigated in Japan. The primary aim of this study was to rate QIs for EOL cancer care from the bereaved family members’ perspective in Japan. A cross-sectional anonymous questionnaire was administered to bereaved family members of cancer patients who had died in an inpatient palliative care unit. We mailed questionnaires to potential respondents in March 2007. Of 160 questionnaires sent, 109 responses were analyzed (effective response rate, 76%). Eighty-eight percent of participants rated the medical examination by the palliative care team or specialist positively, 80% rated the availability of emergency room (ER) services or after-hour examinations positively, and 77% agreed that medical orders to alleviate pain or suffering were documented in the chart. Only 15% of the respondents agreed that it was preferable to die at home. Additionally, 59% and 46% of participants agreed that the occurrence of a fall or pressure ulcer and death by an adverse event from surgery or chemotherapy were poor QIs, respectively. Moreover, only 17% and 14% rated the short interval from chemotherapy to dying and frequent visits to the ER or after-hour examination as poor QIs, respectively. In Japan, it would be appropriate to extract QIs from medical charts. However, many items suggested as QIs in a previous study were found to be different from the opinions expressed by bereaved family members in this study.     

Caregivers' experiences of end-of-life caregiving to severely ill relatives with cancer dying at home: A qualitative study in the Faroe Islands

Background and Aim

It is common among people with advanced cancer to wish to die at home, but only a few succeed in doing so. The willingness of family members to care for a person, who wants to die at home, is crucial This qualitative study aimed to provide insight into conditions that make dying at home possible in a small-scale society and to describe family caregivers' experiences of providing end-of-life care in a private home setting.

Methods

Thirteen caregivers were interviewed, their ages varying from 39 to 84 years. A phenomenological approach, inspired by Giorgi, was applied.

Results

Two essential structures captured the experience of caring at home until death: ‘Managing end-of-life care’ and ‘meaningfulness in a time of impending death’. It was mainly the family, and especially family members with a healthcare background, together with the district nurses, who supported the caregivers in managing the care of a dying relative at home. Being able to fulfil their relative's wish to die at home and to come closer together as a family made the caregivers feel their efforts meaningful.

Conclusion

Our findings point to the importance of having access to home care day and night for the caregivers to feel secure during the night-time. As of now, this is only an option in larger towns in the Faroe Islands, which might also be the case in outskirts areas in other countries. Our findings also showed an unmet need for support to ease the mental load on caregivers. Establishing an outgoing interdisciplinary palliative team would help to increase the number of people who want to die at home and succeed in doing so by giving the caregivers emotional and advisory support.     

Adults’ perspectives on cultural,social and professional support on end-of-life preferences

BackgroundDiverse cultures and social contexts can exhibit different values, religious meaning systems, social norms concerned with social responsibility and interpersonal and family relations. These factors play an essential role in individuals’ decisions and preferences for end-of-life care.AimsTo explore Taiwanese adults’ perspectives on the influences of cultural, social and contextual factors on preferences for end-of-life care.MethodsA semi-structured face-to-face interview approach and content analysis were used. A total of 16 adults were recruited.FindingsMajor themes identified as influencing factors included social, cultural and religious aspects, professional and community resources, perceptions about end-of-life services and attitudes toward death and dying.DiscussionThis suggests that people’s end-of-life preferences can be influenced by social and cultural norms, the adequacy of systems for advance care planning, knowledge about advance directives and palliative care, and emotional reactions toward death and dying.ConclusionsFindings provided insight into adults’ perspectives on how cultural, social norms and religious values and professional support shape individuals’ beliefs and attitudes toward death and dying as well as in end-of-life decision making. These findings contribute to our understanding of adults’ end-of-life preferences and provide guidance for health professionals and communities in assisting Taiwanese people plan for the end of life.     

Agreement among family members in their assessment of the Quality of Dying and Death

Improving end-of-life care requires accurate indicators of the quality of dying. The purpose of this study was to measure the agreement among family members who rate a loved one's dying experience. We administered the Quality of Dying and Death instrument to 94 family members of 38 patients who died in the intensive care unit. We measured a quality of dying score of 60 out of 100 points and found moderate agreement among family members as measured by an intraclass correlation coefficient (ICC) of 0.44. Variability on individual items ranged from an ICC of 0.15 to 1.0. Families demonstrated more agreement on frequencies of events (ICC 0.54) than on determinations of quality (ICC 0.32). These findings reveal important variability among family raters and suggest that until the variability is understood, multiple raters may generate more comprehensive end-of-life data and may more accurately reflect the quality of dying and death.     

Nurses’ perceptions of dealing with death in the emergency department

BackgroundProviding end-of-life care to patients and their families in the emergency department (ED) is challenging, with high workloads, the busy environment, and a focus on providing lifesaving treatments to patients at odds with providing end-of-life and palliative care.AimThe purpose of this study was to investigate nurses’ experiences of providing end-of-life care in EDs, including their perceptions of the most vital elements of care, ability to provide aspects of care, as well as perceptions of their role, communication processes, family presence/involvement, and the ED environment.MethodsNurses (n = 211) working in Australian EDs for at least 12 months completed an anonymous online survey.FindingsNurses identified vital elements of care for dying patients including adequate pain control and a move away from burdensome treatments, sensitive care of families and family access to loved ones, and a quiet environment. However, nurses were not always able to provide such care to their patients. Often, the ED was seen as an unsuitable place for end-of-life care or care of families once the patient had died, and communication between staff and between staff and families was challenging.DiscussionThe ED physical environment, lack of staff training and debriefing, and lack of time to communicate with family, particularly after death, may compromise nurses’ ability to provide end-of-life care that is satisfying to them, their patients, and families.ConclusionThere is a need for focus on the ED physical environment, staff training, and consideration of the emotional experiences of frontline nurses caring for patients at the end of life.     

Perspectives of Family Members on Planning End-of-Life Care for Terminally Ill and Frail Older People

ContextAdvance care planning (ACP) is the process by which patients, together with their physician and loved ones, establish preferences for future care. Because previous research has shown that relatives play a considerable role in end-of-life care decisions, it is important to understand how family members are involved in this process.ObjectivesTo gain understanding of the involvement of family members in ACP for older people near the end of life by exploring their views and experiences concerning this process.MethodsThis was a qualitative research study, done with semistructured interviews. Twenty-one family members were recruited from three geriatric settings in Flanders, Belgium. The data were analyzed using the constant comparative method as proposed by the grounded theory.ResultsFamily members took different positions in the ACP process depending on how much responsibility the family member wanted to take and to what extent the family member felt the patient expected him/her to play a part. The position of family members on these two dimensions was influenced by several factors, namely acknowledgment of the imminent death, experiences with death and dying, opinion about the benefits of ACP, burden of initiating conversations about death and dying, and trust in health care providers. Furthermore, the role of family members in ACP was embedded in the existing relationship patterns.ConclusionThis study provides insight into the different positions of family members in the end-of-life care planning of older patients with a short life expectancy. It is important for health care providers to understand the position of a family member in the ACP of the patient, take into account that family members may experience an active role in ACP as burdensome, and consider existing relationship patterns.     

What does the literature tell us about death,dying and palliative care for people with intellectual disabilities?

Abstract

The development and understanding of palliative care as a medical speciality has influenced the way in which end-of-life care is provided and has become routine and medicalised. The majority of the literature reviewed for this paper described the way in which palliative care service delivery is carried out for people with intellectual disabilities. Much of the research reviewed came to similar conclusions about end-of-life care with the major issues being that of education and communication, and involvement of the individual and their family in decisions made either by them or on their behalf. There was no literature identified that related to the personal experiences of people with intellectual disability who were dying however there was some that related to family experiences and to individual experience of loss and the grieving process.     

Dying in a rural residential aged care facility: an action research and reflection project to improve end-of-life care to residents with a non-malignant disease

This article describes a qualitative research project that explored issues around end-of-life care provided to residents dying from non-malignant diseases in two, rural Australian, residential aged care facilities. Reflective processes and action research were combined to work in collaboration with 14 aged nurses, associated staff and relatives of dying residents. Reflection featured in the research and included group reflection on practice stories, critical reflection during thematic analysis and reflection on action research cycles. Themes and subthemes emerged, indicating that aspects of end-of-life care needed further improvement. Major thematic concerns were prioritized for action and included the need for better pain management practices which will be discussed. Identifying these clinical issues was an important step in creating, implementing and evaluating actions. Participants reported varying degrees of success in attempting to improve end-of-life care.     

End-of-life palliative home care for children with cancer: A qualitative study on parents’ experiences

Background

There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents’ experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life.

Methods

The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings.

Results

Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory.

Conclusion

End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.     

End-of-life care for older adults with dementia living in group homes in Japan

Aim:  The aim of this study was to elucidate the components of end-of-life care provided to older adults with dementia who live in group homes (GHs) in Japan.
Introduction:  The number of GHs in Japan is rapidly increasing. Although GHs were originally not established to care for elderly people with advanced-stage dementia, many residents remain in the GH even after their stage of dementia advances; thus, end-of-life care is required.
Methods:  Interviews were conducted with seven GH administrators on their experience in providing end-of-life care to their residents. The constant comparative approach was used for data collection and analysis.
Findings:  Four themes emerged as essential components of end-of-life care in the GH setting: (i) maintaining a familiar lifestyle; (ii) minimizing physical and mental discomfort; (iii) proactively utilizing desirable medical care; and (iv) collaborating with family members.
Conclusion:  The combination of the four components seems to be a unique characteristic of end-of-life care in GHs in Japan. These findings may be used to establish a framework for end-of-life care at GHs.     

Providing a "good death": critical care nurses' suggestions for improving end-of-life care.

BACKGROUND: Providing appropriate end-of-life care has become a primary concern of nurses and the public. The highly technological critical care environment may not facilitate such care. OBJECTIVE: To collect suggestions from critical care nurses for improving end-of-life care in intensive care units. METHODS: A geographically dispersed, random sample of 1409 members of the American Association of Critical-Care Nurses was sent a 72-item survey on perceptions of end-of life care. The survey included a request for suggestions on ways to improve end-of life care. RESULTS: Of the 861 critical care nurses who responded to the survey, 485 offered 530 suggestions for improving end-of-life care. Providing a "good death" was the major theme; specific suggestions included ways to help ensure death with dignity and peace. Barriers to providing good deaths included nursing time constraints, staffing patterns, communication challenges, and treatment decisions that were based on physicians' rather than patients' needs. Suggestions for providing a good death included facilitating dying with dignity; not allowing patients to be alone while dying; managing patients' pain and discomfort; knowing, and then following, patients' wishes for end-of-life care; promoting earlier cessation of treatment or not initiating aggressive treatment at all; and communicating effectively as a health-care team. Educational initiatives for professionals and the public were also suggested. CONCLUSIONS: Implementation of specific suggestions provided by experienced critical care nurses might increase the quality of end-of-life care, facilitating a good death for intensive care patients.