Self-determination in older patients: Experiences from nurse-dominated ambulance services.

AIM: To describe ambulance clinicians' experiences of self-determination in older patients. DESIGN: The study had an inductive and explorative design, guided from a life-world perspective. METHODS: Thirty-two Swedish ambulance clinicians were interviewed in six focus groups in November 2019. The data were analysed with content analysis, developing manifest categories and latent themes. FINDINGS: The ambulance clinicians assessed the older patients' exercise of self-determination by engaging in conversation and by being visually alert, to eventually gain an overall picture of their decision-making capacity. This assessment was used as a platform when informing older patients of their rights, thus promoting their participation in care. Having limited time and narrow guidelines counteracted ambulance clinicians' ambitions to support older patients' general desire to avoid hospitalization, which resulted in an urge to displace their responsibility to external decision-makers. CONCLUSION: Expectations that older patients with impaired decision-making ability will give homogeneous responses mean an increased risk of ageist attitudes with a simplified view of patient autonomy. Such attitudes risk the withholding of information about options that healthcare professionals do not wish older patients to choose. When decision-making is difficult, requests for expanded guidelines may paradoxically risk alienation from the professional nursing role. IMPLICATIONS AND IMPACT: The findings show ambulance clinicians' unwillingness to shoulder their professional responsibility when encountering older patients with impaired decision-making ability. In assuming that all older patients reason in the same way, ambulance clinicians tend to adopt a simplistic and somewhat ageist approach when it comes to patient autonomy. This points to deficiencies in ethical competence, which is why increased ethics support is deemed suitable to promote and develop ethical competence. Such support can increase the ability to act as autonomous professionals in accordance with professional ethical codes. REPORTING METHOD: This study adhered to COREQ guidelines. PATIENT AND PUBLIC CONTRIBUTION: None.

Ethics rounds in the ambulance service: a qualitative evaluation.

BACKGROUND: It is a common ethical challenge for ambulance clinicians to care for patients with impaired decision-making capacities while assessing and determining the degree of decision-making ability and considering ethical values. Ambulance clinicians' ethical competence seems to be increasingly important in coping with such varied ethical dilemmas. Ethics rounds is a model designed to promote the development of ethical competence among clinicians. While standard in other contexts, to the best of our knowledge, it has not been applied within the ambulance service context. Thus, the aim of this study was to describe ambulance clinicians' experiences of participating in ethics rounds. METHODS: This was a qualitative descriptive study, evaluating an intervention. Data were collected through sixteen interviews with ambulance clinicians who had participated in an intervention involving ethics rounds. The analysis was performed by use of content analysis. RESULTS: Two themes describe the participants' experiences: (1) Reflecting freely within a given framework, and (2) Being surprised by new insights. The following categories form the basis of the themes; 1a) Gentle guidance by the facilitator, 1b) A comprehensible structure, 2a) New awareness in the face of ethical problems, and 2b) Shared learning through dialogue. CONCLUSION: Incorporating structured ethics rounds seems to create a continuous development in ethical competence that may improve the quality of care in the ambulance service. Structured guidance and facilitated group reflections offer ambulance clinicians opportunities for both personal and professional development. An important prerequisite for the development of ethical competence is a well-educated facilitator. Consequently, this type of ethics rounds may be considered a useful pedagogical model for the development of ethical competence in the ambulance service.

Caring for older patients with reduced decision-making capacity: a deductive exploratory study of ambulance clinicians' ethical competence.

BACKGROUND: As more people are living longer, they become frail and are affected by multi-morbidity, resulting in increased demands from the ambulance service. Being vulnerable, older patients may have reduced decision-making capacity, despite still wanting to be involved in decision-making about their care. Their needs may be complex and difficult to assess, and do not always correspond with ambulance assessment protocols. When needing an ambulance, older patients encounter ambulance clinicians who are under high workloads and primarily consider themselves as emergency medical care providers. This situates them in the struggle between differing expectations, and ethical conflicts may arise. To resolve these, providing ethical care, focussing on interpersonal relationships and using ethical competence is needed. However, it is not known whether ambulance clinicians possess the ethical competence required to provide ethical care. Thus, the aim of this study was to deductively explore their ethical competence when caring for older patients with reduced decision-making ability. METHODS: A qualitative deductive and exploratory design was used to analyse dyadic interviews with ambulance clinicians. A literature review, defining ethical competence as comprising ethical sensitivity, ethical knowledge, ethical reflection, ethical decision-making, ethical action and ethical behaviour, was used as a structured categorization matrix for the analysis. RESULTS: Ambulance clinicians possess ethical competence in terms of their ethical knowledge, highlighting the need for establishing an interpersonal relationship with the older patients. To establish this, they use ethical sensitivity to interpret the patients' needs. Doing this, they are aware of their ethical behaviour, signifying how they must act respectfully and provide the necessary time for listening and interacting. CONCLUSIONS: Ambulance clinicians fail to see their gut feeling as a professional ethical competence, which might hinder them from reacting to unethical ways of working. Further, they lack ethical reflection regarding the benefits and disadvantages of paternalism, which reduces their ability to perform ethical decision-making. Moreover, their ethical knowledge is hampered by an ageist approach to older patients, which also has consequences for their ethical action. Finally, ambulance clinicians show deficiencies regarding their ethical reflections, as they reflect merely on their own actions, rather than on their values.

Older patients' perceptions of the Swedish ambulance service: A qualitative exploratory study.

BACKGROUND: As worldwide life expectancy increases, the Swedish Ambulance Service is likely to be affected by the demographic shift towards a larger proportion of older persons. An older population tends to increase the demand for ambulances, indicating a need to illuminate older patients' perspective. Thus, the aim of this study was to explore older patients' perceptions of the Swedish Ambulance Service. METHODS: This interview study employed a descriptive qualitative design with a phenomenographic approach in accordance with Dahlgren and Fallsberg. RESULTS: Three main descriptive categories emerged to describe the underlying conceptions in the interviews; A double-edged encounter, Trust is created by perceived competence, and Safety through accessibility in vulnerable situations. CONCLUSION: Older patients described trust in ambulance clinicians as a prerequisite for feeling safe enough to share their feelings and allow a bodily examination. However, they also criticized the care provided because they questioned the need for certain actions.

Barriers to and facilitators of ethical encounters at the end of life in a nursing home: an ethnographic study.

BACKGROUND: Among a growing population of older persons, many affected by multiple diseases and complex needs, are cared for in nursing homes. Previous studies of nursing homes have highlighted the importance of personalised palliative care. Nevertheless, we know little about whether everyday care practice involving assistant nurses and frail older persons accomplishes ethical encounters, especially in assisted bodily care. Therefore, the aim of this study was to understand and conceptualize the encounter between residents and assistant nurses in bodily care-situations at the end of life in a nursing home. METHODS: Focused ethnographic design was used. Residents and assistant nurses from one nursing home in an urban Swedish area participated in this study. Data were collected for 6 months and consisted of 170 h of fieldwork, including participant observation and interviews. Observations and digitally recorded interviews were analysed thematically. Five public community stakeholders contributed to the analysis by discussing preliminary results and clinical implications in a focus group. RESULTS: Four themes, each encompassing both barriers to and facilitators of ethical encounters in assisted bodily care, were identified: Coping with the impact of workplace demands; Interacting in dialogue and communication; Experiencing involvement in the provision of assisted bodily care; and Adapting to good care and comfort. CONCLUSIONS: The findings suggest that accomplishing ethical encounters in assisted bodily care practice in a nursing home context has many barriers that are related to communication, relationships, and quality of care. Barriers included lack of resources, ineffective communication, and work values, which hinder ethical encounters. Nevertheless, moral sensitivity, genuine interest in resident engagement, and collaborative practices facilitated ethical encounters and are thus central to person-centred care. Uniquely, assistant nurses must be aware of their responsibility for performing their tasks in response to residents' vulnerability. We therefore suggest that moral deliberation over issues of communication, compassion, decision-making, and behavior, with particular consideration for the care relationship. To further improve the quality of care, organisations must provide resources for the building of relationships, as well as time for assistant nurses to recover after long shifts. Additional research is warranted, including implementation of ethically grounded palliative care.

Dignity in bodily care at the end of life in a nursing home: an ethnographic study.

BACKGROUND: Nursing homes (NHs) are populated by the frailest older people who have multiple physical or mental conditions and palliative care needs that may convey the violation of dignity. Although dignity is a commonly used concept and a core value of end-of-life care, it is assumed to be complex, ambiguous, and multivalent. Thus, the aim of this study was to explore aspects of dignity in older persons' everyday lives in a NH. DESIGN: A focused ethnographic study design. METHODS: Data consisted of 170 h of fieldwork, including observations (n = 39) with residents (n = 19) and assistant nurses (n = 22) in a Swedish NH. Interviews were undertaken with residents several times (in total, n = 35, mean 70 min/resident). To study dignity and dignity-related concerns, we used the Chochinov model of dignity to direct the deductive analysis. RESULTS: The study showed that residents suffered from illness-related concerns that inhibited their possibilities to live a dignified life at the NH. Their failing bodies were the most significant threat to their dignity, as loss of abilities was constantly progressing. Together with a fear of becoming more dependent, this caused feelings of agony, loneliness, and meaninglessness. The most dignity-conserving repertoire came from within themselves. Their self-knowledge had provided them with tools to distinguish what was still possible from what they just had to accept. Socially, the residents' dignity depended on assistant nurses' routines and behaviour. Their dignity was violated by long waiting times, lack of integrity in care, deteriorating routines, and also by distanced and sometimes harsh encounters with assistant nurses. Because the residents cherished autonomy and self-determination, while still needing much help, these circumstances placed them in a vulnerable situation. CONCLUSIONS: According to residents' narratives, important dignity-conserving abilities came from within themselves. Dignity-conserving interventions did occur, such as emphatic listening and bodily care, performed in respect for residents' preferences. However, no strategies for future crises or preparing for death were observed. To protect residents' dignity, NHs must apply a palliative care approach to provide holistic care that comprises attention to personal, bodily, social, spiritual, and psychological needs to increase well-being and prevent suffering.

Elements of assisted bodily care: Ethical aspects.

BACKGROUND: Many frail older persons who die in Swedish nursing homes need assisted bodily care. They must surrender their bodies to the authority of assistant nurses, which may affect their autonomy and dignity of identity. While assistant nurses claim to support older persons' wishes, older persons claim they have to adapt to assistant nurses' routines. The provider-receiver incongruence revealed here warrants investigation. AIM: To describe the elements of assisted bodily care, as performed in a nursing home. RESEARCH DESIGN: Data were collected through thirty-nine observations of assisted bodily care, analyzed with qualitative content analysis. PARTICIPANTS AND RESEARCH CONTEXT: Seventeen older persons and twenty-two assistant nurses from a Swedish nursing home. ETHICAL CONSIDERATIONS: The research was conducted in line with the Declaration of Helsinki, further approved by the regional ethics committee. FINDINGS: Findings show that assisted bodily care consists of assistant nurses' practical work, performed at a high tempo. Assistant nurses still attempt to adapt this work to the older persons' wishes for self-determination, taking into account their day-to-day state of health. In spite of time pressure and occasional interruptions, there is room for consideration and affection in assisted bodily care. DISCUSSION: Assistant nurses try to promote older persons' dignity of identity, but sometimes fail, possibly due to lack of time. They nevertheless seem to know the older persons well enough to adapt the assisted bodily care according to their preferences and to support self-determination. This indicates that openness to older persons' lifeworlds may be more important than the amount of time available. CONCLUSION: Nursing home contexts might benefit from adopting a person-centered palliative care perspective, highlighting the value of relationships and shared decision-making. If so, older persons and assisted nurses could agree on practices and goals in assisted bodily care beforehand. Such routines may be time-saving and beneficial to all.

Being a spectator in ambiguity-Family members' perceptions of assisted bodily care in a nursing home.

AIM: The aim of this study was to explore family members' perceptions of assisted bodily care in a nursing home. BACKGROUND: Many older people living in nursing homes need assisted bodily care, provided by assistant nurses. This means exposedness, as the assistance is often provided under stress, but also brings pleasure. Family members, who may wish to and often benefit from continuing to provide assisted bodily care, are perceived as visitors and are expected to relinquish the assisted bodily care to the assistant nurses. DESIGN: This study has a qualitative design with a phenomenographic approach. METHODS: Data were collected through semi-structured interviews (n = 13) with family members of older people who were aged > 80, permanently living in a nursing home, suffering from multimorbidity, and in daily need of assisted bodily care. The data were analysed using a phenomenographic method. RESULTS: Three categories of description presenting an increasing complexity were identified. The family members perceived that assisted bodily care is built upon a respect for the older person's self-determination, practically supported by assistant nurses, and complemented by family members. CONCLUSIONS: In the family members' perceptions, assisted bodily care signifies ambiguity, as they find themselves balancing between the older persons' need for self-determination and need for help, and, further, between their trust in the assistant nurses' skills and their own perceived inadequacies in intimate assisted bodily care. IMPLICATIONS FOR PRACTICE: Policies that address the family members' role in nursing homes are needed. Furthermore, time for collaboration is needed for assistant nurses to inform and explain care decisions, become aware of the family members' perceptions of their situation and learn from them.

Assenting to exposedness - meanings of receiving assisted bodily care in a nursing home as narrated by older persons.

Most older persons moving to a nursing home need to receive assisted bodily care, which means being in a position of vulnerability. However, few studies have explicitly focused on the meanings of receiving assisted bodily care from the older persons' perspective. This study aimed to elucidate meanings of receiving assisted bodily care, as narrated by older persons living in a nursing home. Twelve men and women, aged 80 or older, living in a Swedish nursing home, participated in the study. Data were generated by narrative interviews and analysed with a phenomenological-hermeneutical method. The regional ethics committee approved the study. In the analysis, one main theme emerged: 'Assenting to exposedness'. This theme comprised five themes, 'To have hope in hopelessness', 'To relinquish one's body into others' hands', 'To be between power and powerlessness', 'To oscillate between one's own responsibility and demands', 'To be in an ongoing interaction', and ten subthemes. In conclusion, receiving assisted bodily care means to be exposed, but not passively. Rather, it means to be self-determinant for as long as possible, to perceive the body as lived. When the body must be relinquished to others, it might be objectified, leading to care-suffering. To avoid this, the older persons use a certain competence, acquired through life, to decide when to take action or when to assent. However, this is but one of the several possible interpretations, which may be considered a limitation.

End-of-life care in a nursing home: Assistant nurses' perspectives.

BACKGROUND: Worldwide, older persons lack access to palliative care. In Sweden, many older persons die in nursing homes where care is provided foremost by assistant nurses. Due to a lack of beds, admission is seldom granted until the older persons have complex care needs and are already in a palliative phase when they move in. OBJECTIVE: To describe assistant nurses' perspectives of providing care to older persons at the end of life in a nursing home. RESEARCH DESIGN: Data were collected in semi-structured individual interviews and analyzed with inductive qualitative content analysis. PARTICIPANTS AND RESEARCH CONTEXT: Seven assistant nurses from a nursing home in Sweden were randomly selected. ETHICAL CONSIDERATION: The research was approved by the local ethics committee. RESULTS: Three main categories emerged; "Death a natural part of life"; "The older person's well-being"; and "Care in the moment of death"; and seven sub-categories. The assistant nurses described themselves as knowing the older persons well enough to provide good end-of-life care. This was achieved by making small-talk while providing daily care. Relying on experience-based knowledge, they strove to provide end-of-life care built upon respect and engagement with the ambition to strengthen older persons' dignity, for example, by lowering the tempo of care at the end of life, in spite of organizational restrictions. DISCUSSION: The assistant nurses offered attentive end-of-life care, focusing upon bodily care. The existential needs of the older persons were not foregrounded. CONCLUSION: To develop their work, and to promote an ethical foundation for such care, assistant nurses might need support and education to be able to offer a care more in line with the aims of palliative care. Furthermore, the organization of care needs to promote, not impede, the realization of this development.