Capturing the concealed: Interprofessional practice and older patients' participation in decision-making about discharge after acute hospitalization

The aim of this paper is to investigate ways in which the dynamics of interprofessional work shaped older patients' “participation” in decision-making about discharge from acute hospital care in a medical directorate of a District General Hospital in Scotland. Twenty-two purposively selected older patients and their key professional hospital carers in three different ward environments participated in the study. An ethnographic approach was adopted, involving semi-structured interviews with patients and staff combined with rigorous observation of the practical context for staff and patient interactions during the discharge planning process over a 5-month period. Patients' and staff's understanding of “decision-making” and their priorities for discharge were different, but patients' perspectives fragmented and became invisible. Care routines, which centred around assessments and the decisions that flowed from these tended to exclude both staff and patients from active decision-making. Research and practice on patient involvement in discharge decision-making needs to focus on the organizational context, which shapes patients', unpaid carers' and staff's interactions and the dynamics by which some views are privileged and others excluded. Procedurally driven care routines and their impact on patients', carers' and staff's opportunity to actively engage in decision-making should be re-considered from an empowerment perspective.     

Do Not Resuscitate orders and older patients: findings from an ethnographic study of hospital wards for older people

BACKGROUND AND AIM: This paper reports on the findings from an ethnographic study involving three wards in two hospitals in the Northwest of England and focuses on the controversial issue of Do Not Resuscitate (DNR) orders. The study aimed to explore the way in which terminal care was provided to older patients and examined the way in which DNR orders were a socially constructed part of the practices of both nurses and doctors. METHOD: An ethnographic approach was adopted that used participant observation and semi-structured interviews with nurses and doctors. A purposive sample of 28 qualified nurses and five medical staff were interviewed. The decision-making process of DNR orders became the focus of the interview questions. FINDINGS: The findings reveal that DNR decision-making was largely socially constructed from the interactions of hospital staff. Patients were not asked their preference and were excluded from any decision-making about Cardiopulmonary Resuscitation (CPR) or DNR orders. Two major findings emerge. First, DNR orders and the non-use of CPR could be seen as a form of medical beneficence, resulting from the often described paternalistic attitudes of hospital doctors. Second, there was a clear indication that DNR orders and the non-use of CPR for certain patients was based on improving the quality of patients' lives. CONCLUSION: The study raises issues about the quality of care received by frail older patients whom the nurses felt would not survive a futile medical procedure. The conclusion considers the need for hospitals to formulate and implement CPR policies, particularly in the prevailing climate in which patients are encouraged to become active participants in their own health care.     

Older people's care experience in community and general hospitals: a comparative study

Community hospitals are an important component of the post-acute care pathway for older people. The objective of this study was to describe and contrast patients' and carers' experiences of community and general hospitals. Interviews with patients and carers revealed similarities in the perceptions of care between the two settings. These included appreciation of staff sensitivity, a sense of security, encouragement of independence and lack of activity. The community hospital was appreciated for its location, atmosphere, accommodation, greater sense of freedom, quality of food and staff attitudes. UK health policy promotes the development of community hospitals. This should be progressed in a way that retains key strengths of the specific service they offer.     

Impact of a hospital palliative care service: perspective of the hospital staff

The first New Zealand hospital palliative care support service was established in 1985. Different service models have now been adopted by various major hospitals. In 1998, a palliative care service, funded by Mary Potter Hospice, was piloted at Wellington Public Hospital. Twelve months post-implementation, the hospital staff's views of the service were evaluated. It was found that referrals to palliative care from hospital specialities outside the Cancer Centre increased. While most doctors, nurses and social workers strongly agreed or agreed that the service positively influenced patients' care and effectively addressed their symptom management needs, spiritual needs were less often met. Over 90 percent of each discipline strongly agreed or agreed that the service had assisted them in caring for patients, but, only about a half agreed that useful discharge planning advice and staff support was provided. Significant differences in responses were found between different disciplines and specialities. One fifth of the staff identified palliative care education needs. Recommendations are made concerning the development of a future hospital palliative care service.     

Older patients' first 72 hours in hospital

The aim of this study was to determine what kind of care older patients receive in hospital during the first 72 h after admission. This was examined through four categories: patient's arrival on the hospital ward; patient's daily schedule on the ward; information and guidance; and interaction during the hospital stay. The focus was on five patients aged over 70 who had been admitted for prescribed examinations and care, including starting insulin medication, colonoscopy and a computed tomography scan of the colon. The data were collected by means of non-participant observation; interpretation was based on the method of content analysis. The results showed that the patients' arrival on the ward consisted of routine procedures and periods of waiting. The patients' daily schedule was determined by the ward's routines. They had very little control or influence over their own care, and limited privacy. Interaction between the patient and personnel was minimal, and lasted for only short periods of time. Patients were important sources of information for one another. There was also good cooperation among patients, helping one another to cope with minor everyday problems. It is concluded that nursing staff on the ward were preoccupied by their own routines and largely failed to take into account the views of their patients.     

Communication diary to aid care at the end of life

This study describes how clinical staff at an acute hospital developed and introduced a diary tool that improved communication with the relatives (or carers) of patients receiving end-of-life care. The "Relatives'/carers' diary" was given to relatives of patients on the Liverpool Care Pathway. The diary enables relatives to be more meaningfully engaged in end-of-life care. It also enables nurses to monitor the quality of their care and respond quickly to any concerns.     

Discrepancy between patients' perspectives,staff's documentation and reflections on basic nursing care

In recent years, Denmark has witnessed an increasing written and oral debate concerning the quality of basic nursing care. The present study is an attempt to characterize basic nursing care in a Danish hospital by collecting data on patient perceptions of their main somatic problems in seven pre-set categories. These data include documentation of patient problems in corresponding problem categories, and the staff's additional knowledge about patient problems. Triangulation of methods was used. Data were collected on 120 patients and from 22 nurses. The patients had 2.3 problems on average: pain (58%) and sleep (43%) were the problems cited most frequently. Only 31% of patients' experienced problems were documented in the nursing records. The nursing staff had more knowledge than was registered in the nursing records. However, one-third of the patients' problems was totally unknown to the nursing staff. From the patients' point of view, essential aspects of basic nursing care are overlooked in daily clinical practice. The findings show that the method employed is suitable for integration of the patients' perspective.     

Discharging older people from hospital to care homes: implications for nursing

This paper summarizes a research study which explored the experiences of older people being discharged from hospital to nursing and residential homes in the North East of England. While there has been considerable research which has looked at the discharge of patients from hospital to their own homes, little literature could be found which addressed discharge to care homes. While this may reflect an assumption that this form of discharge is less problematic, it is arguable that this is only the case for staff - there is a body of literature on re-location which suggests that the move to a care home is a major life event for older people. Taking a qualitative approach, this study interviewed 20 older people and 17 of their family members after discharge from hospital to a care home. We found that few people had been offered opportunities to discuss their move with nurses, and that older people tended to adopt a stoical attitude. In focus groups, interviews and written responses from 23 members of staff in the hospital and in care homes, we found that there was a lack of clarity over whose role it was to initiate such discussions. The paper concludes with some discussion of the implications for nursing practice of changing care interfaces.     

How do we facilitate carers’ involvement in decision making?

BACKGROUND: Government health care policy urges service providers to involve service users in the decision-making process. Research studies have recommended changes to current health care practice to facilitate this involvement. However, carers' organizations continue to highlight a gap between policy and practice in relation to involvement. AIM: The aim of the study reported on in this paper was to investigate involvement in a specific health care context with a view to identifying both opportunities for change and practical, realistic ways of bringing about that change. This was a qualitative case study using a case study design. The field site selected was a respite and assessment (23 bedded) ward within the Psychiatric Unit of a hospital specializing in the care of older people. Informal carers (n=20) and members of the multidisciplinary team (n=29) were interviewed about their views and experiences. The interviews were audiorecorded and transcribed. Family meetings, multidisciplinary team meetings and ward routines were the focus of non-participant observation. Field notes from these observations, together with the interview data were analysed using constant comparative method. RESULTS AND CONCLUSIONS. The reported experiences of carers in this study highlighted four markers of satisfactory involvement: feeling that information is shared; feeling included in decision making; feeling that there is someone you can contact when you need to; and feeling that the service is responsive to your needs. The majority of carers felt dissatisfied with the level of involvement. The situation we found echoed that found in other studies, i.e. the majority of informal carers (henceforth 'carers') interviewed were dissatisfied with the level of their involvement. However, our investigation, in which the views of health care professionals as well as those of carers were sought, provided invaluable insight into why this might be the case. Two main sources of difficulty were found: hospital systems and processes, and the relationship between nursing staff and carers. The argument made is that practitioners themselves must notice and challenge these barriers if carer involvement is to be facilitated.     

Feeling an outsider left in uncertainty – a phenomenological study on the experiences of older hospital patients

This paper starts from a care ethical perspective on care and reports on a phenomenological study into older patients’ experiences of hospitalisation. Although hospital care for older patients is at the centre of attention, questions what is at stake and what defines quality of care are rarely discussed with a view to the perspective of older patients themselves. The qualitative observational method of shadowing was used. Ten patients of 75 years old or older were shadowed from admission until discharge. The reflective lifeworld approach, based on phenomenological philosophy, was used to analyse the collected data. For the older patients included in the study, the essential meaning of hospitalisation can be described as feeling an outsider left in uncertainty. The word ‘left’ reveals how hospitalisation is experienced as a solitary struggle with various uncertainties that are related both to the hospital environment and to the patient's personal situation. The essential meaning is composed of the following three constituents: (i) staying in an inhospitable place, (ii) feeling constrained and (iii) experiencing disruption. The busy walking back and forth of care professionals and the functional character of involvement, restrain older patients from participating and make them feel abandoned. Feeling constrained reveals the feelings brought on by the ageing body which are emphasised by hospitalisation but often neglected by hospital staff. The failure of healthcare professionals to recognise and respond to who older patients are aside from their illness exacerbate the experience of disruptions. To improve care, hospital staff must be more sensitive to older patients’ uncertainties. Also, hospital staff should provide older patients with understandable information and explanation which besides offering patients the possibility to feel involved, meets their need for recognition.     

Autonomy,privacy and informed consent 3: elderly care perspective

Despite the growing interest in clinical healthcare ethics, there is a dearth of empirical studies investigating the ethical elements of day-to-day clinical practice from the perspective of either patients or staff. This article, the third in a four-part series, reports the results of a Scottish Study that formed part of a multi-site comparative study funded by the European Commission. It explores patient autonomy, privacy and informed consent in the care of elderly people in long-stay care facilities (i.e. nursing homes and continuing care units). A convenience sample of 101 elderly residents and their nurses (n = 160) participated in the study. Data were collected by means of a self-completion questionnaire for staff and a structured interview schedule for elderly residents. Results indicate marked differences between staff's and residents' responses on three of the four dimensions explored: information-giving, and opportunity to participate in decision-making about care and consent. There was much closer agreement between staff's and residents' responses regarding protection of patient privacy. From the results of this study there is indication of a clear need for further empirical studies exploring issues of patient autonomy, privacy and informed consent in the day-to-day nursing care of older people. Findings to date suggest there is still a significant need to educate staff concerning ethical awareness and sensitivity to the dignity and rights of patients.     

On the importance of congruence between psychiatric staff and patient about the patient's status

This study explores the usefulness of a method for comparing the congruence of the staff's and the patients' perceptions of the patients' well-being. At a psychiatric rehabilitation clinic, a comparison was made between the patients' and the staff's views of the patients' well-being. The staff and the patients completed questionnaires about the patients' well-being on ten occasions during a 5-year period. Through a principal components analysis of the questionnaire scores, two conceptually similar dimensions (health-illness, and contact-distance) were identified on each set of scores. The staff and patient ratings on the two dimensions could thus be compared. During the time of the study, a reorganisation of the clinic was made. This made it possible to compare older and newer units. The results indicated that the staff at long-existing units rated the patients' health as lower than the patients did, whereas the staff at newer units rated the patients' health as better than the patients did. The staff at units where the patients lived in their own apartments saw the patients as less contact-seeking than the patients did, and the staff at in-patient units saw the patients as more contact-seeking than the patients did. The two-dimensional PC-models made it possible to visually illustrate the developments for three individual patients. The results thus showed that the method is useful for research purposes as well as for clinical evaluations. In the final section, problems and assets of the method are discussed.     

Carers' reflections about their video-recorded interactions with patients suffering from severe dementia

Stimulated recall interviews were used in connection with carers' video-recorded interactions with patients suffering from severe dementia before, during and after a 1-year intervention involving supervision for individualized nursing care. The aim was to illuminate carers' reflections on their everyday life with the patients, and to find out if any changes took place across the intervention. A phenomenological-hermeneutic approach was used in the analysis, which revealed that carers' reflections were focused on the carers themselves, on the patients, on context and on the work itself in the shared everyday life. After repeated stimulated recall interviews, together with supervision every month, an improvement in carers' ability to verbalize their reflections and an awareness and knowledge about their own influence on care quality were seen. The interdependence between carers and patients made it necessary for the carers to cope with many complicated here-and-now situations, and in their reflections the carers kept coming back to their efforts to maintain a sense of dignity for the patients as well as for themselves. Reflection through stimulated recall seems to be an important tool for carers in dementia care to facilitate understanding and to help them learn through lived experience, thus developing their skills in nursing care.     

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.     

Resident decision-making in the context of residential aged care

Background

Worldwide research confirms that older people value autonomy, want to remain independent and want control over their lives for as long as possible. Accordingly, the aged care system in Australia is undergoing major government-initiated reforms and is moving towards consumer directed care.

Hospital discharge of older adults. How nurses can ease the transition

When an older adult is discharged from the hospital, she or he should have an individualized, comprehensive discharge plan to help prevent unnecessary complications and rehospitalization. But the large number of older adults who are hospitalized and their typically greater needs can make creating such a plan a challenge for clinicians. Clear communication among hospital personnel, patients, family members, case managers, and community caregivers (such as home health care nurses and long-term care staff) is essential. In examining effective discharge planning for this population, this article examines five discharge models.