Ethical challenges causing moral distress: nursing home staff's experiences of working during the COVID-19 pandemic.

OBJECTIVE: To investigate the experiences of healthcare staff in nursing homes during the COVID-19 pandemic. DESIGN: Individual interviews. Latent qualitative content analysis. SETTING: Ten nursing homes in Sweden. SUBJECTS: Physicians, nurses and nurse assistants working in Swedish nursing homes. MAIN OUTCOME MEASURES: Participants' experiences of working in nursing homes during the COVID-19 pandemic. RESULTS: Four manifest categories were found, namely: Balancing restrictions and allocation of scarce resources with care needs; Prioritizing and acting against moral values in advance care planning; Distrust in cooperation and Leadership and staff turnover - a factor for moral distress. The latent theme Experiences of handling ethical challenges caused by the COVID-19 pandemic gave a deeper meaning to the categories. CONCLUSION: During the pandemic, nursing home staff encountered ethical challenges that caused moral distress. Moral distress stemmed from not being given adequate conditions to perform their work properly, and thus not being able to give the residents adequate care. Another aspect of moral distress originated from feeling forced to act against their moral values when a course of action was considered to cause discomfort or harm to a resident. Alerting employers and policymakers to the harm and inequality experienced by staff and the difficulty in delivering appropriate care is essential. Making proposals for improvements and developing guidelines together with staff to recognize their role and to develop better guidance for good care is vital in order to support and sustain the nursing home workforce.

The COVID-19 pandemic has affected both patients and staff in nursing homes, in Sweden and worldwide.Our study highlights that during the COVID-19 pandemic, nursing home staff encountered several ethical challenges which caused moral distress.Moral distress stemmed from not being given adequate conditions to perform their work, thus not giving the residents appropriate care.Moral distress could also originate from nursing home staff's feeling of being forced to act against their moral values.

Thanks for hearing me: key elements of primary care according to older patients.

Objective: When organising healthcare and planning for research to improve healthcare, it is important to include the patients' own perceptions. Therefore, the aim was to explore older patients' views on what is important concerning their current care and possible future interventions in a primary care setting.Design: A qualitative design with individual interviews was used. Analysis through latent content analysis.Setting: Seven Swedish primary care centres.Subjects: Patients (n 30) aged >75 years, connected to elder care teams in primary healthcare.Results: Three categories, consisting of 14 sub-categories in total, were found, namely: Care characterised by easy access, continuity and engaged staff builds security; Everyday life and Plans in late life. The overarching latent theme Person-centred care with easy access, continuity and engaged staff gave a deeper meaning to the content of the categories and sub-categories.Conclusion: It is important to organise primary care for older people through conditions which meet up with their specific needs. Our study highlights the importance of elder care teams facilitating the contact with healthcare, ensuring continuity and creating conditions for a person-centred care. There were variations regarding preferences about training and different views on conversations about end-of-life, which strengthens the need for individualisation and personal knowledge. This study also exemplifies qualitative individual interviews as an approach to reach older people to be part of a study design and give input to an upcoming research intervention, as the interviews contribute with important information of value in the planning of the Swedish intervention trial Secure and Focused Primary Care for Older pEople (SAFE).

In this qualitative interview study, the three categories Care characterised by easy access, continuity and engaged staff builds security; Everyday life and Plans in late life with underlying sub-categories describe the older patients' views on what is important in their current care and possible future interventions in a Swedish primary care setting.The latent theme 'Person-centred care with easy access, continuity and engaged staff' was formed to give a deeper meaning to the content of the categories and sub-categories.Having a permanent care contact with a responsible nurse in an elder care team and a personal doctor (most often a general practitioner) over time seems important for vulnerable older patients with high risk of hospitalisation.The study suggests qualitative individual interviews as an approach to increase older peoples' participation in future clinical complex study designs.

Trustful conversations: a qualitative interview study on older patients' experiences of the intervention Proactive healthcare in a Swedish primary care setting.

AIM: To explore older patients' experiences of the intervention Proactive healthcare for frail elderly persons. BACKGROUND: Previous research has indicated that continuity and good access to primary care can improve satisfaction in older people seeking care. However, little is known about the older patients' experiences in taking part of interventions aiming to enhance the care. METHODS: Individual interviews were conducted with 24 older patients who participated in the intervention Proactive healthcare for frail elderly persons, selected from nine Swedish primary care centres. Interviews were analysed using qualitative content analysis. FINDINGS: Older patients' experiences of the intervention involved five manifest categories: Ways of naming the elder care team, covering the older patients' lack of understanding regarding their connection to the team, and the need for clarity on this and on how the specialised care provided differed from conventional care; Availability, indicating how older patients associated easy access and a direct telephone number with a team nurse available at certain times with a sense of security; The importance of relations, covering how patients appreciated continuity in their personal and professional conversations with staff; A feeling of safety and trust, stressing the value of older persons attach to being given enough time, to be listened to and being recognised as people; and Finiteness of life, which refers to the difficulty of having end-of-life conversations and the need for experienced staff with personal knowledge of the patients. The latent theme Trustful conversations was created to give a deeper meaning to the content of the categories.Trustful conversations, created through good personal knowledge of patients and continuity of contact, engender a feeling of safety in older patients. Using elder care teams could result in a better quality of care, with increased satisfaction and feelings of security among patients, and a reduction in healthcare needs.

Association between vaccination and preventive routines on COVID-19-related mortality in nursing home facilities: a population-based systematic retrospective chart review.

BACKGROUND: Older and frail individuals are at high risk of dying from COVID-19, and residents in nursing homes (NHs) are overrepresented in death rates. We explored four different periods during the COVID-19 pandemic to analyze the effects of improved preventive routines and vaccinations, respectively, on mortality in NHs. METHODS: We undertook a population-based systematic retrospective chart review comprising 136 NH facilities in southeast Sweden. All residents, among these facilities, who died within 30 days after a laboratory-verified COVID-19 diagnosis during four separate 92-day periods representing early pandemic (second quarter 2020), middle of the pandemic (fourth quarter 2020), early post-vaccination phase (first quarter 2021), and the following post-vaccination phase (second quarter 2021). Mortality together with electronic chart data on demographic variables, comorbidity, frailty, and cause of death was collected. RESULTS: The number of deaths during the four periods was 104, 120, 34 and 4, respectively, with a significant reduction in the two post-vaccination periods (P < 0.001). COVID-19 was assessed as the dominant cause of death in 20 (19%), 19 (16%), 4 (12%) and 1 (3%) residents in each period (P < 0.01). The respective median age in the four studied periods varied between 87and 89 years, and three or more diagnoses besides COVID-19 were present in 70-90% of the respective periods' study population. Considerable or severe frailty was found in all residents. CONCLUSIONS: Vaccination against COVID-19 seems associated with a reduced number of deaths in NHs. We could not demonstrate an effect on mortality merely from the protective routines that were undertaken.

Prevalence, content and significance of advance care planning in nursing home patients.

OBJECTIVE: Studies on advance care planning in nursing homes are rare, and despite their demonstrated favourable effects on end-of-life care, advance care plans are often lacking. Therefore, we wished to explore: (i) the prevalence of advance care plans in a Swedish nursing home setting using two different definitions, (ii) the content of advance care plans, (iii) adherence to the content of care plans and (iv) possible associations between the presence of advance care planning and background characteristics, physician attendance and end-of-life care. DESIGN: Retrospective chart review. SETTING: Twenty-two nursing homes in Sweden. SUBJECTS: A total of 367 deceased patients (included between 1 June 2018 and 23 May 2020) who had lived in nursing homes. MAIN OUTCOME MEASURES: Electronic health record data on the prevalence of advance care plans with two different definitions and variables regarding background characteristics, physician attendance and end-of-life care, were collected. RESULTS: Of the study population, 97% had a limited care plan (ACP I) documented. When using the comprehensive definition (ACP II), also including patient's preferences and involvement of family members in advance care planning, the prevalence was 77%. Patients with dementia more often had care plans, and a higher physician attendance was associated with presence of advance care plans. Prescription of palliative drugs and information to family members of the patient's deterioration and impending death were more common in patients with care plans compared to those where such plans were missing. There was adherence to the care plan content. CONCLUSION: In contrast to previous research, this study showed a high prevalence of advance care plans in nursing home patients. Patients with care plans more frequently received prescriptions of palliative drugs and their family members were informed to a greater extent about the patient's deterioration and impending death compared to those without care plans. These aspects are often seen as vital components of good palliative care.Key pointsStudies on advance care planning in nursing homes are rare, and despite their demonstrated positive effects on end-of-life care, advance care plans are often lacking.The present study revealed a high prevalence of advance care plans (77-97% depending on definition) in nursing home patients.Patients with dementia more often had advance care plans, and a higher physician attendance was associated with presence of care plans.Advance care plans were positively associated with components of good palliative care, such as prescriptions of palliative drugs and information to family.

Elephant in the room - Family members´ perspectives on advance care planning.

OBJECTIVE: To explore family members' experiences of advance care planning in nursing homes. DESIGN: Individual interviews. Thematic analysis. SETTING: Four nursing homes in Sweden. SUBJECTS: Eighteen family members of deceased nursing home patients. MAIN OUTCOME MEASURES: Family members' experiences of advance care planning in nursing homes. RESULTS: Family members' experiences of advance care planning in a nursing home context involved five themes: Elephant in the room, comprising end-of-life issues being difficult to talk about; Also silent understanding, e.g. patient's preferences explicitly communicated, but also implicitly conveyed. In some cases family members had a sense of the patient's wishes although preferences had not been communicated openly; Significance of small details, e.g. family members perceive everyday details as symbols of staff commitment; Invisible physician, supporting nurse, e.g. nurse being a gatekeeper, providing a first line assessment in the physician's absence; and Feeling of guilt, e.g. family members wish to participate in decisions regarding direction of care and treatment limits, and need guidance in the decisions. CONCLUSION: Our study stresses the significance of staff involving the patient and family members in the advance care planning process in nursing homes, thereby adapting the care in line with patient's wishes, and for the patient to share these preferences with family members. Education in communication related to the subject may be important to shape advance care planning. Key points Knowledge on advance care planning (ACP) in a nursing home (NH) context from the perspective of family members is limited. Role of the nurse in ACP is seen as central, whereas physician involvement is often perceived to be lacking. Significance of small details, perceive to symbolize staff competence and respect for patient autonomy. To limit family members' feeling of guilt, communicating end-of-life issues is important in order to align ACP with patient preferences.

'We have no crystal ball' - advance care planning at nursing homes from the perspective of nurses and physicians.

Objective: To investigate clinicians' perspectives on the factors that shape the process of advance care planning in a nursing home context. Design: Interviews. Latent qualitative content analysis. Setting: Nine nursing homes in Sweden. Subjects: 14 physicians and 11 nurses working at nursing homes. Main outcome measures: Participants' views on advance care planning (ACP) at nursing homes. Results: The analysis of the interviews resulted in four manifest categories: Exploration of preferences and views, e.g. exploring patient wishes regarding end-of-life issues and restrictions in care at an early stage, and sensitivity to patient's readiness to discuss end-of-life issues; Integration of preferences and views, e.g. integration of patient's preferences and staff's and family member's views; Decision & documentation of the ACP, e.g. clear documentation in patient's medical records that are up-to-date and available for staff caring for the patient, and Implementation & re-evaluation of the ACP, e.g. nurse following up after ACP-appointment to confirm the content of the documented ACP. The latent theme, Establishing beneficence - defending oneself against tacit accusations of maleficence, emerged as a deeper meaning of all the four (manifest) parts of the ACP-process Conclusion: This study stresses the importance of involving patients, family members, and the team in the work with advance care planning in nursing homes. In addition, clear medical record documentation and proficiency in end-of-life communication related to advance care planning for physicians as well as nurses may also be factors that significantly shape advance care planning in a nursing home context. Key Points Advance care planning can help patients to receive care in line with their preferences and can positively impact quality of end-of-life care. Our results describe a process consisting of four manifest categories and one latent theme constituting the process of advance care planning, that may be considered in education in advance care planning. The significance of nurses and physicians perceiving beneficence as well as fear of accusations of maleficence are important factors to contemplate. The study has implications for healthcare staff caring for patients near the end of their lives, in particular patients in nursing homes.

A good death from the perspective of palliative cancer patients.

PURPOSE: Although previous research has indicated some recurrent themes and similarities between what patients from different cultures regard as a good death, the concept is complex and there is lack of studies from the Nordic countries. The aim of this study was to explore the perception of a good death in dying cancer patients in Sweden. METHODS: Interviews were conducted with 66 adult patients with cancer in the palliative phase who were recruited from home care and hospital care. Interviews were analysed using qualitative content analysis. RESULTS: Participants viewed death as a process. A good death was associated with living with the prospect of imminent death, preparing for death and dying comfortably, e.g., dying quickly, with independence, with minimised suffering and with social relations intact. Some were comforted by their belief that death is predetermined. Others felt uneasy as they considered death an end to existence. Past experiences of the death of others influenced participants' views of a good death. CONCLUSIONS: Healthcare staff caring for palliative patients should consider asking them to describe what they consider a good death in order to identify goals for care. Exploring patients' personal experience of death and dying can help address their fears as death approaches.