To explore nurses’ and physicians’ end-of-life (EOL) experiences in the newborn intensive care unit.
A hermeneutic phenomenology of health-care providers’ lived experiences with infant deaths in the newborn intensive care unit between January and August 2006 was conducted. Semistructured interviews were completed with individual providers. Demographic data were also collected. Analysis of themes and descriptive statistics were performed.
Twenty-one nurses and 11 physicians were interviewed. Providers described their experiences largely through an overall theme of ‘creating the best possible experience’ for parents. To support this theme, three subthemes (building relationships, preparing for the EOL and creating memories) were common between physicians and nurses. However, nurses and physicians articulated their roles and obligations differently within these subthemes. Additionally, three subthemes through which the providers described their personal experiences were found and these included moral distress, parental readiness and consent for autopsy.
A primary finding of this study was that a common overall obligation among nurses and physicians was to create the best possible experience for parents. Despite this commonality, the two disciplines approached the EOL and accomplished their common obligation from different vantage points.
health-care provider obligations; relationships; hermeneutic phenomenology; moral distress
Our world is rapidly becoming a global community, which creates a need to further understand the universal phenomena of death and professional caring for dying persons. This study thus was conducted to describe the meaning of nurses’ experiences of caring for dying people in the cultural contexts of Iran and Sweden.
Materials and Methods:
Using a phenomenological approach, phenomenon of caring for dying people was studied. Eight registered nurses who were working in oncology units in Tehran, Iran and eight registered nurses working in hospital and home care in North part of Sweden were interviewed. The interviews were analyzed using the principles of phenomenological hermeneutics.
The findings were formulated based on two themes included: (1) “Sharing space and time to be lost”, and (2) “Caring is a learning process.
The results showed that being with dying people raise an ethical demand that calls for personal and professional response, regardless of sex, culture or context. The physical and organizational context must be supportive and enable nurses to stand up to the demands of close relationships. Specific units and teamwork across various personnel seem to be a solution that is missing in Iran.
Caring for dying; Iranian nurses; Oncology; Palliative care; Swedish nurses
Older persons in transition between hospital and home care services are in a particularly vulnerable situation and risk unfortunate consequences caused by organizational inefficiency. The purpose of the study reported here was to elucidate how home nursing leaders experience the administration of care to older people in transition from hospital to their own homes.
A qualitative study design was used. Ten home nursing leaders in two municipalities in southern Norway participated in individual interviews. The interview texts were audio taped, transcribed verbatim and analyzed by use of a phenomenological-hermeneutic approach.
Three main themes and seven subthemes were deduced from the data. The first main theme was that the home nursing leaders felt challenged by the organization of home care services. Two subthemes were identified related to this. The first was that the leaders lacked involvement in the transitional process, and the second was that they were challenged by administration of care being decided at another level in the municipality. The second main theme found was that the leaders felt that they were acting in a shifting and unsettled context. Related to this, they had to adjust internal resources to external demands and expectations, and experienced lack of communication with significant others. The third main theme identified was that the leaders endeavored to deliver care in accordance with professional values. The two related subthemes were, first, that they provided for appropriate internal systems and routines, and, second, that they prioritized available professional competence, and made an effort to promote a professional culture.
To meet the complex needs of the patients in a professional way, the home nursing leaders needed to be flexible and pragmatic in their administration of care. This involved utilizing available professional competence appropriately. The coordination and communication between the different organizational levels and units were pointed out as major factors requiring improvement.
cooperation; geriatric patients; home nursing leaders; phenomenological-hermeneutic method; prioritization; transitional care
Registered nurses (RNs) working in homecare encounter severely ill and palliative patients whose expressions may cause ethical challenges and influence their daily work. The aim of this qualitative study was to illuminate and interpret the meaning of nurses’ lived experiences when meeting these patients. Narrative interviews were conducted with 10 RNs working in home nursing care. These interviews were audiotaped and transcribed verbatim to a text and interpreted by a phenomenological-hermeneutic method inspired by Ricoeur. The meaning of the RNs’ lived experience of patients’ expressions was formulated into four themes. The first theme, Being open for the presence of the Other, includes two subthemes: “Sensing vulnerability” and “Empathizing with.” The second theme, Being satisfied, entails the subthemes, “Feeling exceptional” and “Being trusted.” The third theme, Being frustrated, contains the subthemes, “Being disappointed” and “Being angry.” The fourth and final theme, Being ambivalent, includes one subtheme: “Being generous or reserved.” Patients’ expressions that make impressions on nurses create emotional waves. Expressions leave impressions that call upon the nurse, and confront her with taking the risk of letting intuition and pre-reflexive feelings gain entry to her care. Allowing for the Other's presence is seen as a precondition, which means facing humanity and sensing a vulnerability in herself as well as in the Other. Understanding and balancing this emotional dimension in care seems to cause confusion and distress within the nurses. Realizing how their feelings may lead to either generosity or aloofness towards the patient is upsetting. Our interpretation suggests that these impressions echo confusion according to the role of being a professional nurse. There is a need to pay more attention to how the emotional dimension in care is understood and impacts the way nurses perform their professional role.
Nurse–patient interactions; emotional dimension; touch; home nursing care; palliative care; professional identity; phenomenological-hermeneutic approach
Older persons with mental disorders, excluding dementia disorders, constitute a vulnerable group of people. With the future international increase in the older population, mental disorders will increase as well, thus entailing new challenges for their caregivers. These older persons often remain in their own homes, and in Sweden they are cared for by nursing aides. With little previous research, an increased workload and facing new strenuous situations, it is important to make use of the knowledge the nursing aides possess and to deepen the understanding of their experiences. The study aimed at illuminating the meaning of caring for older persons with mental disorders as experienced by nursing aides in the municipal home help service. Interviews with nine female nursing aides were performed and analysed with a phenomenological hermeneutical research method inspired by the philosophy of Paul Ricoeur. Being altruistically egoistic emerged as a main theme in the nursing aides’ narratives. The nursing aides’ experiences could be interpreted as a movement between being altruistic and egoistic. The findings revealed a continuous distancing by the nursing aides and their struggle to redress the balance between their altruistic and egoistic actions. Caring for these older persons constitutes a complex situation where distancing functions as a recourse to prioritize oneself and to diminish the value of caring. The study suggests that an increased knowledge base on older persons with mental disorders, followed by continuous supervision, is necessary for the nursing aides to improve the quality of the care given.
Aged; care of older people; mental disorders; municipal care of the old; nursing aides; phenomenological hermeneutics
As part of a capacity-building research project, this study examined the extent to which caring for people living with HIV and AIDS (PLWHA) affects both professional and personal relationships of nurse caregivers. The data were collected using focus group interviews with 17 female nurses at two Limpopo hospitals. The PEN-3 cultural model was used as a theoretical framework for exploring how nurses balance job demands with family responsibilities. The results generated three themes: the multiple identities nurses experience within their family and professional lives; nurse attitudes related to patient gender; and stigma experienced by nurses who care for PLWHA. Caring for PLWHA influences nurses’ personal and professional lives by interfering with their perceptions and emotions as they relate to spousal, parental, and gendered relationships. The findings offer insight into factors requiring consideration when designing interventions to help nurses cope with the stress associated with caring for PLWHA while simultaneously managing family responsibilities.
Nurses play an integral role in providing care for patients with end of life (EOL) symptoms refractory to conventional treatments and that may necessitate palliative sedation (PS). A paucity of research on nurses' attitudes, knowledge, and experience with PS exists, despite nurses being instrumental in evaluating its appropriateness and carrying out the care plan.
The objective of the study was to elicit nurses' perspectives and conceptualizations of knowledge and skills needed to administer PS in order to inform development of a hospital policy that addresses identified concerns.
Four focus groups were conducted with nurses likely to have had exposure to PS (oncology, intensive care, and hospice) at an academic medical center. Focus groups were audiotaped, transcribed verbatim, and coded for salient themes. Grounded theory principles were used for the analysis.
Among the four focus groups (n=31), 87% were female, 58% between the ages of 36 and 55, and more than 40% reported 10-plus years of providing patient care. Five domains emerged as important in developing a PS policy: 1) ability to define PS; 2) criterion for using PS; 3) skill set for administering PS; 4) policy and procedural guidelines; and 5) education on PS and EOL care.
Nurses identified knowledge, skills, and guidelines as key considerations for implementing PS. Comprehensive policies along with adequate training are needed to expand the availability of PS in acute care hospitals and hospice programs.
Older persons in transition to need professional care in their homes will constitute a large group in municipalities in the future. The aim of this study was to obtain insight into nurses' experiences and perceptions of caring for patients in transition to receive homecare. Eleven home nurses divided into two focus groups were interviewed, and a phenomenological hermeneutical design was used. Four interpretations closely related to each other were revealed: it is essential to have an understanding of the patients' transition history; the nurse' repertoire is challenged in the transition process; care must be adapted to the patients' life world; the excellence of care is threatened by the context. The nurses strived to provide care based upon respect for the independent individual as a living whole. Their ambitions were, however, challenged and threatened by the caring context. The cooperation across organizational levels was pointed out as a critical factor with potential for improvement. This must be taken seriously to support the nurses in their endeavors to provide excellent care.
This article describes successful institutionally-based programs for providing high quality palliative care to people with cancer and their family members. Challenges and opportunities for program development are also described.
Published literature from 2000 to present describing concurrent oncology palliative care clinical trials, standards and guidelines were reviewed.
Clinical trials have demonstrated feasibility and positive outcomes and formed the basis for consensus guidelines that support concurrent oncology palliative care models.
Implications for nursing practice
Oncology nurses should advocate for all patients with advanced cancer and their families to have access to concurrent oncology palliative oncology care from the time of diagnosis with a life-limiting cancer.
Cancer palliative care models; review; palliative care standards
High quality end-of-life care in the community is achieved with effective multidisciplinary teamwork, interprofessional communication between GPs and district nurses, and early referral of patients to district nurses. These aspects of palliative care are highlighted in the Gold Standards Framework, a programme recently established in UK primary care.
To investigate the extent to which the framework influences interprofessional relationships and communication, and to compare GPs' and nurses' experiences.
Design of study
Qualitative interview case study.
Fifteen participating practices from three primary care trusts in England.
Thirty-eight semi-structured interviews were undertaken with GPs, district nurses, Macmillan nurses, and framework facilitators.
Adoption of the framework often resulted in earlier referral of palliative care patients to district nurses. Multidisciplinary team meetings enabled communication for sharing knowledge, discussing management problems, and keeping colleagues informed; however, arranging and maintaining such meetings was often problematic. Nurses particularly valued formal meetings while GPs generally preferred informal ad hoc dialogue. GPs largely maintained control of the mode of multidisciplinary working. The best functioning teams used a mixture of formal and informal meetings with a relatively non-hierarchical working style.
Implementing the framework enabled processes of communication associated with high quality palliative care in general practice, but there was marked variation in how this worked in individual teams. In general, hierarchical doctor–nurse relationships persisted.
communication; interdisciplinary health care team; interprofessional relationships; primary care; palliative care
Background. Nurses who provide end of life and bereavement care to neonates and their families are potentially at risk for developing stress-related health problems. These health problems can negatively affect nurses' ability to care for their patients. Purpose. Nurses need to be knowledgeable about end of life and bereavement issues to provide quality care. This study sought to evaluate the effect of a bereavement seminar on the attitudes of nurses regarding end of life and palliative care of neonates. Design. A convenience sample of fourteen neonatal nurses completed a Bereavement/End of Life Attitudes about Care of Neonatal Nurses Scale after a bereavement seminar designed to provide information on end of life care. A pre- and posttest design with an intervention and control group was used to assess changes in nurse bereavement attitudes in relationship to comfort, role, and involvement. Results. After bereavement seminar, the seminar attendees had higher levels of comfort in providing end of life care than nurses in the control group (t = −0.214; P = 0.04). Discussion. Nurses' comfort levels can be improved by attending continuing education on end of life care and having their thoughts on ethical issues in end of life care acknowledged by their peers.
The purpose of this study was to acquire a deeper understanding of patients' memories of being injured and the trajectory of care before, during and after their Intensive Care Unit (ICU) stay.
Interviews were conducted with eighteen informants who after physical trauma had been cared for in the ICU. The interviews were analyzed by using a phenomenological hermeneutical method.
The memories of injury during the trajectory of care are illustrated in a figure in which the injured informants have memories from five scenes; the scene of the accident, emergency unit, ICU, nursing ward and of coming home. Twelve subthemes were abstracted and four themes emerged; a surrealistic world, an injured body, care, and gratitude for life. After the accident, a "surrealistic world" appeared along with bad memories of being in a floating existence where plans had to be changed. This world was unfamiliar, sometimes including delusional and fragmentary memories from the ICU, and it was experienced as uncontrollable. They felt connected to an "injured body", experiencing bad memories from the ICU of being injured, from the nursing ward of simply enduring and of being in a No Man's Land when coming home; their lives had become limited. At the same time they were "connected to care" with good memories of receiving attention from others at the scene of the accident, being taken cared of at the emergency unit and cared for in the ICU. This care made them realise that people are responsible for each other, and they felt comforted but also vulnerable. Finally, they experienced "gratitude for life". This included good memories of being loved together with support from their families at the ICU, wanting to win life back at the nursing ward and acceptance when returning home. The support from their families made them realise that they fit in just as they are.
When bad memories of a surrealistic world and of being injured are balanced by good ones of care and love with a gratitude for life, there are more possibilities to move on despite an uncertain future following the injury.
The aims of this study were to identify the associations with the Japanese population's preferences for the place of end-of-life care and their need for receiving health care services.
A secondary analysis of a cross-sectional nationwide survey was conducted for 2000 randomly selected Japanese people aged 40–79 years.
A total of 1042 people (55%) responded. Regarding preferred place of care, we set the place within the choices of “Home” (preferred by 44% of respondents), “Acute Hospital” (15%), “Palliative Care Unit” (19%), “Public Nursing Home” (10%), and “Private Nursing Home” (2%). Multinomial logistic regression analysis revealed that the people who preferred “Acute Hospital” tended to have the following need compared to those who preferred “Home,” “Palliative Care Unit,” or “Nursing Home”: higher need for receiving end-of-life care not from its experienced professionals but from the same staff; higher need for using health care services in highly supported environment such as the need for being near health care staff whenever and for receiving treatment possibly until the end; and higher need for consulting nurses whenever. They had lower need for using home care services and daycare services and also lower need for instructing families about how to use insurance/public health services.
The present findings may help to develop an effective end-of-life care system in Japan considering Japanese people's need for health care services. Also, the results of this study may underscore the importance of education on receiving home care services especially for the people who presently prefer the hospital for end-of-life care.
The issues related to end of life decisions and mortality in the intensive care unit are common occurrences for the nursing staff. For the Critical Care/Burn nurse, issues such as who should be resuscitated, what are the end points of treatment, and what will be the quality of life for the patient if he/she survives are major factors in end of life decisions. Furthermore, the close relationships that can develop between the nurse and the patient and/or the patient's family make end of life decisions emotionally difficult. Unlike the other members of the multidisciplinary team, the nurses spend more time with the dying patient and his/her family, answering questions, explaining the care and course of the illness, and assisting the patient and family in understanding what the doctors have said. Repeated explanations are needed because the family and patient are under tremendous stress. Nurses experience emotional distress and need to develop resilience to continue to care for and work with patients approaching the end stages of life. The purpose of this paper is to briefly review the literature and use a case scenario to illustrate the challenges the Critical Care/Burn nurse faces when caring for the dying patient.
Burns; critical care; death and dying
Integration of palliative care for intensive care unit (ICU) patients is important but often challenging, especially in surgical ICUs (SICUs), in part because many surgeons equate palliative care with terminal care and failure of restorative care. SICU nurses, who are key front-line clinicians, can provide insights into barriers for delivery of optimal palliative care in their setting.
We developed a focus group guide to identify barriers to two key components of palliative care—optimal communication regarding prognosis and optimal end-of-life care—and used the tool to conduct focus groups of nurses providing bedside care in three SICUs at a tertiary care, academic, inner city hospital. Using content analysis technique, responses were organized into thematic domains that were validated by independent observers and a subset of participating nurses.
Four focus groups included a total of 32 SICU nurses. They identified 34 barriers to optimal communication regarding prognosis, which were summarized into four domains: logistics, clinician discomfort with discussing prognosis, inadequate skill and training, and fear of conflict. For optimal end-of-life care, the groups identified 24 barriers in four domains: logistics, inability to acknowledge an end-of-life situation, inadequate skill and training, and cultural differences relating to end-of-life care.
Nurses providing bedside care in SICUs identify barriers in several domains that may impede optimal discussions of prognoses and end-of-life care for patients with surgical critical illness. Consideration of these perceived barriers and the underlying SICU culture is relevant for designing interventions to improve palliative care in this setting.
With our population aging, an increasing proportion of cancer deaths will occur in nursing homes, yet little is known about their end-of-life care. This paper identifies associations between residing in a nursing home and end-of-life palliative cancer care, controlling for demographic factors.
For this population-based study, a data file was created by linking individual-level data from the Nova Scotia Cancer Centre Oncology Patient Information System, Vital Statistics, and the Halifax and Cape Breton Palliative Care Programs for all persons 65 years and over dying of cancer from 2000 to 2003. Multivariate logistic regression was used to compare nursing home residents to nonresidents.
Among the 7,587 subjects, 1,008 (13.3%) were nursing home residents. Nursing home residents were more likely to be female [adjusted odds ratio (OR) 1.4, 95% confidence interval (CI) 1.2–1.7], older (for ≥90 vs 65–69 years OR 5.4, CI 4.1–7.0), rural (OR 1.5, CI 1.2–1.8), have only a death certificate cancer diagnosis (OR 4.2, CI 2.8–6.3), and die out of hospital (OR 8.5, CI 7.2–10.0). Nursing home residents were less likely to receive palliative radiation (OR 0.6, CI 0.4–0.7), medical oncology consultation (OR 0.2, CI 0.1–0.4), and palliative care program enrollment (Halifax OR 0.2, CI 0.2–0.3; Cape Breton OR 0.4, CI 0.3–0.7).
Demographic characteristics and end-of-life services differ between those residing and those not residing in nursing homes. These inequalities may or may not reflect inequities in access to quality end-of-life care.
PMID: 17277924 CAMSID: cams3259
Nursing home; Cancer; Place of death; End-of-life; Palliative care
This paper explores the role of religious belief in the experiences of dying and death in a Catholic nursing home. The home appeals to residents and their families due to the active religious presence. Thus, religion is a salient element of the “local culture” which exists in this long-term care setting. The preeminence of faith within the organization and the personal religious convictions of staff, residents, and families may drive how death and dying are discussed and experienced in this setting, as well as the meanings that are attached to them. This paper examines the relationship between faith and the experience and meaning of death in this nursing home. We present themes that emerged from open-ended interviews with residents, family members, and staff, gathered between 1996 and 2004. The data indicate that people select the home due to their Catholic faith and the home's religious tone. Themes also show that belief in God and an afterlife helps shape the experience of dying and death for our informants. Our paper does not compare ease of dying with other nursing homes or within other belief systems.
The goal of this article is to augment the ethical discussion among nurses with the findings from empirical research on autonomy of older adults with type 2 diabetes mellitus. There are many factors influencing autonomy. These include: health conditions, treatment, knowledge, experience and skills, personal approach as well as familial patterns, type of relationship, life history and social context. Fifteen older adults with type 2 diabetes mellitus were interviewed in a nurse-led diabetes clinic. These participants perceive three processes which support autonomy in responsive relationships: preserving patterns of concern and interaction, nurturing collaborative responsibilities and being closely engaged in trustful and helpful family relations. People with diabetes realize autonomy in various responsive relationships in their unique life context. Next, we performed a literature review of care ethics and caring in nursing with regard to relational autonomy. We classified the literature in five strands of care: attitude-oriented, dialogue-oriented, activity-oriented, relationship-oriented and life-oriented. According to our respondents, autonomy in responsive relationships is fostered when patient, nurses, professionals of the health team and family members carry out care activities supported by a relational attitude of care. They can best realize autonomy in relationships with others when several essential aspects of care and caring are present in their lives. Therefore, we advocate a comprehensive approach to care and caring.
Caring activity; Caring attitude; Care ethics; Nurse-led clinic; Patient’s perspective; Relational autonomy; Responsive relationships; Type 2 diabetes mellitus
Palliative care for children and adolescents with cancer includes interventions that focus on the relief of suffering, optimization of function, and improvement of quality of life at any and all stages of disease. This care is most effectively provided by a multidisciplinary team. Nurses perform an integral role on that team by identifying symptoms, providing care coordination, and assuring clear communication. Several basic tenets appear essential to the provision of optimal palliative care. First, palliative care should be administered concurrently with curative therapy beginning at diagnosis and assuming a more significant role at end of life. This treatment approach, recommended by many medical societies, has been associated with numerous benefits including longer survival. Second, realistic, objective goals of care must be developed. A clear understanding of the prognosis by the patient, family, and all members of the medical team is essential to the development of these goals. The pediatric oncology nurse is pivotal in developing these goals and assuring that they are adhered to across all specialties. Third, effective therapies to prevent and relieve the symptoms of suffering must be provided. This can only be accomplished with accurate and repeated assessments. The pediatric oncology nurse is vital in providing these assessments and must possess a working knowledge of the most common symptoms associated with suffering. With a basic understanding of these palliative care principles and competency in the core skills required for this care, the pediatric oncology nurse will optimize quality of life for children and adolescents with cancer.
palliative care; pediatrics; nursing; cancer
Although pediatric nurses working in children's hospitals often provide care to dying children, little is known about their palliative care beliefs and experiences as individuals or members of groups within the hospital.
To describe pediatric nurses' ratings of palliative care goals and problems, as individuals and members of clusters of nurses with similar views, and nurses' degree of collaboration with an inpatient palliative care team across hospital units.
A cross-sectional survey of nurses at a freestanding children's hospital in 2005.
Nurses rated the most important goals as managing pain, maintaining the child's quality of life, and improving communication. Commonly cited problems were lack of opportunity to debrief after a patient's death, uncertainty about the goals of care, and the health care team's reluctance to discuss hospice with family. Based on individual views about goals and problems, nurses clustered into 5 groups that differed in terms of the adamancy of their views and the scope of the goals and problems they considered important or significant. The hospital unit was the most important factor in predicting nurses' degree of collaboration with the palliative care team even after accounting for individual characteristics.
Pediatric nurses broadly endorse both the importance of palliative care goals and the presence of problems yet perceive the importance of these goals and problems differently. Further, they vary in their level of collaborative practice with a palliative care team in ways that should be accounted for when planning and implementing palliative care programs.
OBJECTIVE: Much of what we know about ethical issues in palliative care comes from the perceptions of physicians and ethicists. In this study our goal was to hear other voices and to gain first-hand knowledge of the possibly contrasting views of patients, their families, nurses, volunteers, and other team members on end-of-life issues. DESIGN: Qualitative study using semistructured interviews. SETTING: Inpatient and consultation palliative care service of the Royal Victoria Hospital in Montreal, Que. PARTICIPANTS: Of 113 people interviewed, 13 were patients, 43 were family members, 32 were volunteers, 14 were nurses, and 11 were other staff. METHOD: Interviewers elicited subjects' perspectives on ethical issues. Content analysis was used to identify, code, and categorize themes in the data. MAIN FINDINGS: Communication difficulties and insufficient resources and staff were the most frequently mentioned problems in this palliative care setting. CONCLUSION: The findings of this study will help guide policy decisions and setting of educational priorities in end-of-life care, particularly regarding the importance of adequate communication.
Older persons with mental disorders represent a vulnerable group of people with extensive and complex needs. The older population is rapidly increasing worldwide and, as a result of deinstitutionalization in mental health care, older persons are remaining at home to a greater extent. Although they constitute a large proportion of the population, older persons with mental disorders have been neglected in research as well as in care organizations. As there is little previous knowledge concerning older persons’ experiences of their own situations, this study aimed to illuminate the meaning of the life situation as experienced by older persons with mental disorders (excluding dementia disorders). Interviews were conducted with seven older persons and the text was analyzed using a phenomenological hermeneutical research method, inspired by the philosophy of Paul Ricoeur. “Struggling for existence” emerged as a main theme in the older persons’ narratives, understood as a loss of dignity of identity and involving being troubled and powerless as well as yearning for respect. The older persons fought to master their existence and to be seen for who they are. The study highlights the importance for caregivers, both formal and informal, to avoid focusing on the diagnoses and rather acknowledge the older persons and their lifeworld, be present in the relation and help them rebuild their dignity of identity. This study brings a new understanding about older persons with mental disorders that may help reduce stigma and contribute to planning future mental health care.
Aged; gerontology; mental disorders; municipal care of the old; phenomenological hermeneutics; psychiatry
In Australia, many people ageing in their own homes are becoming increasingly frail and unwell, approaching the end of life. A palliative approach, which adheres to palliative care principles, is often appropriate. These principles provide a framework for proactive and holistic care in which quality of life and of dying is prioritised, as is support for families. A palliative approach can be delivered by the general practitioner working with the community aged care team, in collaboration with family carers. Support from specialist palliative care services is available if necessary.
The Guidelines for a Palliative Approach for Aged Care in the Community Setting were published by the Australian Government Department of Health and Ageing to inform practice in this area. There are three resource documents. The main document provides practical evidence based guidelines, good practice points, tools, and links to resources. This document is written for general practitioners, nurses, social workers, therapists, pastoral care workers, and other health professionals and responded to needs identified during national consultation. Evidence based guidelines were underpinned by systematic reviews of the research literature. Good practice points were developed from literature reviews and expert opinion. Two ‘plain English’ booklets were developed in a process involving consumer consultation; one is for older people and their families, the other for care workers.
The resources are intended to facilitate home care that acknowledges and plans for the client’s deteriorating functional trajectory and inevitable death. At a time when hospitals and residential aged care facilities are under enormous pressure as the population ages, such a planned approach makes sense for the health system as a whole. The approach also makes sense for older people who wish to die in their own homes. Family needs are recognised and addressed. Unnecessary hospitalisations or residential placements and clinically futile interventions are also minimised.
Evidence-based health care; guidelines; palliative care; aged care; community care
An increasing number of older people reach the end of life in care homes. The aim of this study is to explore the perceived benefits of, and barriers to, implementation of the Gold Standards Framework for Care Homes (GSFCH), a quality improvement programme in palliative care.
Nine care homes involved in the GSFCH took part. We conducted semi-structured interviews with nine care home managers, eight nurses, nine care assistants, eleven residents and seven of their family members. We used the Framework approach to qualitative analysis. The analysis was deductive based on the key tasks of the GSFCH, the 7Cs: communication, coordination, control of symptoms, continuity, continued learning, carer support, and care of the dying. This enabled us to consider benefits of, and barriers to, individual components of the programme, as well as of the programme as a whole.
Perceived benefits of the GSFCH included: improved symptom control and team communication; finding helpful external support and expertise; increasing staff confidence; fostering residents' choice; and boosting the reputation of the home. Perceived barriers included: increased paperwork; lack of knowledge and understanding of end of life care; costs; and gaining the cooperation of GPs. Many of the tools and tasks in the GSFCH focus on improving communication. Participants described effective communication within the homes, and with external providers such as general practitioners and specialists in palliative care. However, many had experienced problems with general practitioners. Although staff described the benefits of supportive care registers, coding predicted stage of illness and advance care planning, which included improved communication, some felt the need for more experience of using these, and there were concerns about discussing death.
Most of the barriers described by participants are relevant to other interventions to improve end of life care in care homes. There is a need to investigate the impact of quality improvement programmes in care homes, such as the GSFCH, on a wider range of outcomes for residents and their families, and to monitor the sustainability of any resulting improvements. It is also important to explore the impact of the different components of these complex interventions.
Purpose: This qualitative study sought to explore older people's experience of ageing with multiple sclerosis (MS) and to describe the natural history of self-management from their points of view. Methods: Eighteen people over age 55 and living with MS for at least 20 years were recruited from an MS clinic and rehabilitation outpatient records. Interviews (60–80 min), using open-ended questions, explored participants' lifelong experiences of MS. Following interview transcription, data were coded and analyzed; themes, subthemes, and their relationships were described based on consensus. Results: Participants recounted their diagnosis process, their life experience with MS, and how they eventually accepted their disease, adapted, and moved toward self-management. The findings included vivid descriptions of social relationships, health care interactions, overcoming barriers, and the emotions associated with living with MS. A conceptual model of phases of self-management, from diagnosis to integration of MS into a sense of self, was developed. Conclusions: Study participants valued self-management and described its phases, facilitators, and inhibitors from their points of view. Over years and decades, learning from life experiences, trial and error, and interactions with health care professionals, participants seemed to consolidate MS into their sense of self. Self-determination, social support, strong problem-solving abilities, and collaborative relationships with health professionals aided adaptation and coping. Findings from this study make initial steps toward understanding how MS self-management evolves over the life course and how self-management programmes can help people with MS begin to manage wellness earlier in their lives.
aged; chronic disease; adaptation, psychological; quality of life; self care; multiple sclerosis; autogestion des soins; habiletés d'adaptation; maladie chronique; qualité de vie; vieillissement