Nothing to complain about? Residents’ and relatives’ views on a “good life” and ethical challenges in nursing homes

Background: Nursing home residents are a vulnerable population. Most of them suffer from multi-morbidity, while many have cognitive impairment or dementia and need care around the clock. Several ethical challenges in nursing homes have been described in the scientific literature. Most studies have used staff members as informants, some have focused on the relatives’ view, but substantial knowledge about the residents’ perspective is lacking. Objective: To study what nursing home residents and their relatives perceive as ethical challenges in Norwegian nursing homes. Research design: A qualitative design with in-depth interviews with nursing home residents, and focus-group interviews with relatives of nursing home residents. The digitally recorded interviews were transcribed verbatim. Analysis was based on Interpretive Description. Participants and research context: A total of 25 nursing home residents from nine nursing homes in Norway, and 18 relatives of nursing home residents from three of these nursing homes. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Oslo, Norway. Findings and discussion: The main ethical challenges in Norwegian nursing homes from the residents’ and relatives’ perspective were as follows: (a) acceptance and adaptation, (b) well-being and a good life, (c) autonomy and self-determination, and (d) lack of resources. The relationship with the staff was of outmost importance and was experienced as both rewarding and problematic. None of the residents in our study mentioned ethical challenges connected to end-of-life care. Conclusion: Residents and relatives experience ethical challenges in Norwegian nursing homes, mostly connected to “everyday ethical issues.

Nothing to complain about? Residents’ and relatives’ views on a “good life” and ethical challenges in nursing homes

Background: Nursing home residents are a vulnerable population. Most of them suffer from multi-morbidity, while many have cognitive impairment or dementia and need care around the clock. Several ethical challenges in nursing homes have been described in the scientific literature. Most studies have used staff members as informants, some have focused on the relatives’ view, but substantial knowledge about the residents’ perspective is lacking. Objective: To study what nursing home residents and their relatives perceive as ethical challenges in Norwegian nursing homes. Research design: A qualitative design with in-depth interviews with nursing home residents, and focus-group interviews with relatives of nursing home residents. The digitally recorded interviews were transcribed verbatim. Analysis was based on Interpretive Description. Participants and research context: A total of 25 nursing home residents from nine nursing homes in Norway, and 18 relatives of nursing home residents from three of these nursing homes. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Oslo, Norway. Findings and discussion: The main ethical challenges in Norwegian nursing homes from the residents’ and relatives’ perspective were as follows: (a) acceptance and adaptation, (b) well-being and a good life, (c) autonomy and self-determination, and (d) lack of resources. The relationship with the staff was of outmost importance and was experienced as both rewarding and problematic. None of the residents in our study mentioned ethical challenges connected to end-of-life care. Conclusion: Residents and relatives experience ethical challenges in Norwegian nursing homes, mostly connected to “everyday ethical issues.

They know!—Do they? A qualitative study of residents and relatives views on advance care planning, end-of-life care, and decision-making in nursing homes

Background: Residents living in long-term care facilities are a vulnerable population. For many residents, a nursing home is their place of death. Palliative care and end-of-life decisions are important components of their care provision. Aim: To study the views of cognitively able residents and relatives on advance care planning, end-of-life care, and decision-making in nursing homes. Design: A qualitative study with in-depth interviews with nursing home residents and focus group interviews with relatives of nursing home residents. Analysis is based on interpretive description. Setting/participants: In total, 43 informants from nine nursing homes participated in the study (25 nursing home residents and 18 relatives). All included residents had capacity to provide informed consent and lived in long-term care. Results: The main findings of this study were the differing views about decision-making and advance care planning of residents and relatives. Residents do trust relatives and staff to make important decisions for them. The relatives are in contrast insecure about the residents’ wishes and experience decision-making as a burden. The majority of the residents had not participated in advance care planning. None of the residents stated challenges connected to end-of-life care or mentioned the wish for euthanasia. Conclusion: Although most residents seem to be satisfied with decision-making and end-of life care, there is a need for systematic advance care planning. Advance care planning could help to explore future wishes for care and ease decision-making for the relatives, physicians, and staff and should be offered to all cognitively able nursing homes residents

Experiences and challenges of home care nurses and general practitioners in home-based palliative care – a qualitative study

Background Norway has one of the lowest home death rates in Europe. However, it is the health authorities´ ambition to increase this by facilitating palliative care at home. The aim of this study was to achieve more insight, through home care nurses and general practitioners, of conditions that facilitate or hamper more time at home and more home deaths for patients with terminal disease and short life expectancy. Methods We used a qualitative research design with four focus groups with a total of 19 participants, of either home care nurses or general practitioners, using semi-structured question guides. The data were processed by systematic text condensation and encompassed thematic analysis of meaning and content of data across cases, which included four steps of analysis. Results Three main themes were identified: 1) The importance of a good start for the patient and family with five sub-themes, 2) ‘Passing the baton’ – the importance of collaboration across the health system with four sub-themes, and 3) Avoiding new hospitalization by establishing collaboration and competence within primary health care with four sub-themes. Conclusions This study demonstrates that optimum palliative care at home depends on close collaboration and dialogue between the patient, family, home care nurses and general practitioner. It suggests the need for safer discharge routines and planning when hospitals transfer patients with terminal disease to their homes. A good start for the patient and family, where the initial interdisciplinary collaboration meeting takes place in the patient’s home, is crucial for a good result. The general practitioners’ perception of their ‘disconnection’ during hospitalization and prior to discharge has the potential to reduce patient safety. The family seems to be fundamental in gaining more time at home for the patient and supporting the patient to eventually die at home. Home-based palliative care demands experience and competence as well as regular supportive mentoring

The European Association for Palliative Care basic dataset to describe a palliative care cancer population:Results from an international Delphi process

Background: One of the barriers identified in palliative care research is the lack of common criteria to describe the population. Aim: The aim of this Delphi process was to obtain consensus on a basic set of core variables to describe or classify a palliative care cancer population. Design and setting: This was a five-step international Delphi exercise. A total of 117 experts were invited to participate. Based on a literature review and analyses of existing minimum datasets for national databases, a list of 18 proposed variables was presented in the first Delphi round. The two first rounds focused on which variables to include, and several new variables were proposed. The three last Delphi rounds focused on how the agreed variables should be recorded. Consensus was defined as at least 70% agreement. Results: A total of 64 experts from 30 countries participated. High consensus was reached on 31 variables, divided between a ‘patient form’ – date of birth, gender, living situation, education, ethnicity and 12 symptoms – and a ‘health-care personnel form’ – patient’s date of birth, principal diagnosis, date of the principal diagnosis, stage of the cancer disease, site of metastases, present anticancer treatment, main additional diagnoses, stage of the additional diagnoses, medication, weight loss, performance status, cognitive impairment, place of care and provision of care. It was more difficult to agree upon how to record the variables, but consensus was reached on all except ethnicity, vomiting and weight loss. Conclusion: Consensus was reached on a set of core variables and how they should be recorde

Adverse events and in-hospital mortality: an analysis of all deaths in a Norwegian health trust during 2011

Abstract Background The estimated number of in-hospitals deaths due to adverse events is often different when using data from deceased patients compared with that of a population experiencing adverse events. Methods The study was conducted at three hospitals in the Bergen Hospital Trust, including a 950-bed university hospital. The objective was to study the reported deaths and investigate the probable number of deaths caused by adverse events. Information about all patients who died in the hospitals during 2011 was retrieved from the electronic patient data management system and the medical records. All deaths were classified into two groups according to Norwegian law based on whether or not the death was sudden and/or unexpected. The cause of death in the latter group was further classified as being due to either natural or unnatural causes according to national requirements. An expert review panel screened the patient records for information regarding adverse events and possible (≥ 50%) preventability. Age, length of hospital stay, and Charlson Comorbidity Index were also registered. Results There were 59,605 unique patients admitted in 2011 and 1185 registered deaths (1.98%). The mean and median ages of the deceased were 73,8 and 78 years, respectively, and the median length of stay was 5.6 days (range). Of these deaths, 290 (24.5%) were considered sudden and/or unexpected and 218 were considered to be due to natural causes. Of the 72 unnatural deaths, 16 (1.4%) were classified as preventable or probably preventable. For 18 deaths (%) it was impossible to confirm or rule out preventability. Conclusions Using this method, we identified a small proportion of hospital deaths that could be classified as unnatural. Furthermore, there was a ≥ 50% chance or more that 34 deaths (2.9%) were due to causes that could have been prevented