‘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.

     

Healthcare professionals’ experiences with highly qualified nurses working in acute care teams in primary healthcare settings

ObjectiveStrengthening primary healthcare with highly qualified nurses in acute care units or teams is a new Danish initiative intended to detect acute diseases and the deterioration of chronic diseases and to develop treatment for outpatients. This study explores healthcare professionals’ experiences with this initiative.DesignQualitative semi-structured interviews conducted in 2019–2020. Analysis was conducted with a systematic text condensation.SettingThis study is based on an acute care team in one Danish municipality called Acute Team Odense (ATO). ATO delivers acute nursing in patients’ own homes (including nursing homes) in collaboration with different healthcare professionals.SubjectsIndividual interviews with general practitioners (GPs) (n = 15), five focus-group interviews with nurses and nursing assistants from the municipality (n = 19) and one focus-group interview with staff from the emergency department (ED) (n = 10).Main outcomesExperiences of different healthcare professionals’ experiences with ATO.ResultsIn general, all of the participants were very satisfied with the new acute care team and the cross-sectorial possibilities. The GPs usually referred ATO to assessments in which paraclinical equipment, competencies, accessibility, response time and communication were important. The municipal nurses and nursing assistants tended to use ATO if they needed second opinions or acute nurse assistance. The ED most often used ATO to assist with intravenous therapy after an ED visit. All participants reported that ATO increased what could be assessed and treated in patients’ homes, which is central to preventing unnecessary hospitalisations.ConclusionsATO created new possibilities in patient’s homes which potentially might prevent unnecessary hospitalisations.

KEY POINTS

• Acute care units or teams are mandatory in Danish health care, but limited knowledge in the area is found.
• Healthcare professionals found that the acute care teams provided new possibilities to assess and treat patients in their own homes.
• Healthcare professionals experienced that the acute care team potentially prevented hospitalisations by fast clinical nurse assessments with paraclinical tests.

     

A client-centered approach in home care for older persons – an integrative review

Objective To describe and synthesize client-centered care and service in home care for older persons.Methods The study was an integrative review using the guidelines for literature reviews by the Joanna Briggs Institute. The research process followed the Whittemore and Knafl framework and PRISMA toolkit in the selection of eligible articles. The CINAHL, Medline, Scopus, Web of Science and Social Sciences abstracts were searched for articles published between January 2007 and May 2020 according to previously designed search strategies. In total, 24 articles were deemed relevant for an analysis using a thematic analysis.Results The analysis resulted in four themes with sub-themes which revealed that client-centered care and service in home care consist of: 1) Clients’ involvement in their own care; self-care, decision-making, satisfactory daily life, 2) Family members’ and care partners’ participation in care; family members’ and care partners’ commitment to care, family members’ and care partners’ competence in care, 3) Communication and co-operation; communication models, empowerment, partnership, and 4) Evidence-based service competence; delivery and organization of services, implementation of services, versatile clinical skills, quality outcomes and personnel wellbeing.Conclusions According to the results, achieving client-centered care and service in home care requires the realization of all of the above aspects. The practice of nursing must better identify all dimensions of client-centered care and take these into account in the delivery of home care services.

KEY POINTS

• Client-centeredness is a fundamental value and the basis of nursing and care in home care provided for older persons
• This paper:
• deepens and structures the concept of client-centered care in the context of home care.
• assists professionals to understand the factors behind client-centered care within the home care environment.
• provides deeper understanding of the roles of the older person, family members, and the service system in developing client-centered services in home care for older persons.

     

Perspectives of Family Members on Planning End-of-Life Care for Terminally Ill and Frail Older People

ContextAdvance care planning (ACP) is the process by which patients, together with their physician and loved ones, establish preferences for future care. Because previous research has shown that relatives play a considerable role in end-of-life care decisions, it is important to understand how family members are involved in this process.ObjectivesTo gain understanding of the involvement of family members in ACP for older people near the end of life by exploring their views and experiences concerning this process.MethodsThis was a qualitative research study, done with semistructured interviews. Twenty-one family members were recruited from three geriatric settings in Flanders, Belgium. The data were analyzed using the constant comparative method as proposed by the grounded theory.ResultsFamily members took different positions in the ACP process depending on how much responsibility the family member wanted to take and to what extent the family member felt the patient expected him/her to play a part. The position of family members on these two dimensions was influenced by several factors, namely acknowledgment of the imminent death, experiences with death and dying, opinion about the benefits of ACP, burden of initiating conversations about death and dying, and trust in health care providers. Furthermore, the role of family members in ACP was embedded in the existing relationship patterns.ConclusionThis study provides insight into the different positions of family members in the end-of-life care planning of older patients with a short life expectancy. It is important for health care providers to understand the position of a family member in the ACP of the patient, take into account that family members may experience an active role in ACP as burdensome, and consider existing relationship patterns.     

Awareness of parental illness: a grounded theory of upholding family equilibrium in parents on long-term sick-leave in primary health care

ObjectiveTo understand the main concern of chronically ill parents and how they resolve this concern in relation to their children.DesignGrounded theory.SettingThree primary health care clinics in Sweden.SubjectsThirty-two interviewed parents and their children.Main outcome measuresProcesses and typologies of upholding family relationships.ResultsA concern of chronically ill parents is sustaining family equilibrium, achieved through a process of upholding family relationships. How a parent upholds depends upon his/her comprehension of the illness and of their child’s need for parenting. In response to the parent’s upholding behaviours, children mirror the effect of the illness to the parent, the child’s specific behaviour depending on his/her level of comprehension regarding the parent’s illness. Their combined behaviours create an awareness context that may be closed, concealed, suspicious, conflicted, mutual pretence or open.When the parent drives and facilitates the evolution of comprehension, the context quickly evolves from closed to open. When the parent hinders the process by masking and resisting the child responds by probing and proving and they become locked into a suspicious or conflicted awareness context with high relational tension. To create family equilibrium the parent needs to reveal and facilitate the awareness process.ConclusionParents on long-term sick leave in primary health care can need assistance to facilitate the awareness context of themselves and their child.Implications: Clinicians can identify the current awareness context of their patient and help their patient towards increased understanding of their illness; their child’s needs and the parental capacities needed to reveal the illness and its impacts.

Key Points

• Children are affected when parents are ill; they wish for information on their parent’s illness. Effective interventions are available in settings other than primary health care and possibilities seen by GPs and families in Scandinavian primary health care have been previously described. There is a knowledge gap in how parents view themselves and their parenting when ill in primary health care. An analysis grounded in interviews was needed to generate a hypothesis (theory) of parental concerns and behaviours.
• This theory proposes that an important concern of chronically ill parents is to sustain family equilibrium, which they attempt to do by upholding family relationships.
• Specific upholding behaviours include masking, resisting, colluding, and revealing. In response, children will engage in mirroring behaviours. Which paired behaviours are enacted will depend upon the respective levels of comprehension of parent and child regarding the illness and on the child’s need for parenting. In their interactions, parent and child create one of six awareness contexts.
• Identifying the current awareness context in the family about chronic parental illness provides clinicians with a conceptual tool to better support those families locked in suspicious or conflicted awareness contexts.

     

Decision-making conversations for life-sustaining treatment with seriously ill patients using a Danish version of the US POLST: a qualitative study of patient and physician experiences

ObjectiveTo explore patients’ and physicians’ perspectives on a decision-making conversation for life-sustaining treatment, based on the Danish model of the American Physician Orders for Life Sustaining Treatment (POLST) form.DesignSemi-structured interviews following a conversation about preferences for life-sustaining treatment.SettingDanish hospitals, nursing homes, and general practitioners’ clinics.SubjectsPatients and physicians.Main outcome measuresQualitative analyses of interview data.FindingsAfter participating in a conversation about life-sustaining treatment using the Danish POLST form, a total of six patients and five physicians representing different settings and age groups participated in an interview about their experience of the process. Within the main research questions, six subthemes were identified: Timing, relatives are key persons, clarifying treatment preferences, documentation across settings, strengthening patient autonomy, and structure influences conversations. Most patients and physicians found having a conversation about levels of life-sustaining treatment valuable but also complicated due to the different levels of knowledge and attending to individual patient needs and medical necessities. Relatives were considered as key persons to ensure the understanding of the treatment trajectory and the ability to advocate for the patient in case of a medical crisis. The majority of participants found that the conversation strengthened patient autonomy.ConclusionPatients and physicians found having a conversation about levels of life-sustaining treatment valuable, especially for strengthening patient autonomy. Relatives were considered key persons. The timing of the conversation and securing sufficient knowledge for shared decision-making were the main perceived challenges.

KEY POINTS

• Conversations about preferences for life-sustaining treatment are important, but not performed systematically.
• When planning a conversation about preferences for life-sustaining treatment, the timing of the conversation and the inclusion of relatives are key elements.
• Decision-making conversations can help patients feel in charge and less alone, and make it easier for health professionals to provide goal-concordant care.
• Using a model like the Danish POLST form may help to initiate, conduct and structure conversations about preferences for life-sustaining treatment.

     

Advance Care Planning in Community-Dwelling Patients With Dementia

Context

Little is known about advance care planning (ACP) among community-dwelling patients with dementia.

Physicians’ experiences of video consultation with patients at a public virtual primary care clinic: a qualitative interview study

ObjectiveTo describe physicians’ experiences of video consultation with new patients visiting a publicly owned virtual primary care clinic.DesignIn this qualitative study, data were collected from semi-structured individual interviews and analysed by systematic text condensation.SettingA publicly owned virtual primary care clinic in Region Västra Götaland, Sweden.SubjectsTen primary care physicians working at the clinic.ResultsConnecting with a patient over video could be either straightforward or deficient, depending on communication and the patient’s condition. Clinical experience, communication skills, and involving patients throughout the consultation and examination were crucial for assessments over video where patients were guided to perform self-examination. The flexibility of work and the regulated assignment online were positive for the physicians’ work situation and wellbeing. Providing video consultation within the same organisation as the patient’s regular health centre was considered to facilitate patient care and safety. Video consultation was considered suitable for some diagnoses and for some patients not able to reach a primary healthcare centre, though doubts were expressed about the healthcare and social benefits of this virtual care service.ConclusionFor the physicians, video consultation induced changes in the basis for assessment of primary care patients. The limitations on informational exchange demanded an extended form of patient involvement founded upon consultation skills, clinical experience and new skills for virtual examination. Combining virtual care with traditional general practice has the potential to reduce the workload for the individual physician and ensure medical competence in virtual primary care. Video consultation experienced suitable in some situations, but easy access to it expressed problematic in terms of medical prioritisation in healthcare.

KEY POINTS

• Video consultation is suitable for primary care visits for some patients, but physicians’ experiences of this are rarely studied.
• •Clinical experience and consultation skills are important for video assessment of primary care patients which involves physician-guided patient self-examination.
• •Video consultation facilitates care in some situations and could benefit from the provider being connected to patient’s regular health centre.
• •Virtual care offers a flexible way of working but challenges healthcare prioritisation from the primary care physician’s perspective.

     

Patient-centered and efficacious advance care planning in cancer: Protocol and key design considerations for the PEACe-compare trial

BackgroundFailure to deliver care near the end of life that reflects the needs, values and preferences of patients with advanced cancer remains a major shortcoming of our cancer care delivery system.MethodsA mixed-methods comparative effectiveness trial of in-person advance care planning (ACP) discussions versus web-based ACP is currently underway at oncology practices in Western Pennsylvania.Patients with advanced cancer and their caregivers are invited to enroll. Participants are randomized to either (1) in-person ACP discussions via face-to-face visits with a nurse facilitator following the Respecting Choices® Conversation Guide or (2) web-based ACP using the PREPARE for your care™ web-based ACP tool. The trial compares the effect of these two interventions on patient and family caregiver outcomes (engagement in ACP, primary outcome; ACP discussions; advance directive (AD) completion; quality of end-of-life (EOL) care; EOL goal attainment; caregiver psychological symptoms; healthcare utilization at EOL) and assesses implementation costs. Factors influencing ACP effectiveness are assessed via in-depth interviews with patients, caregivers and clinicians.DiscussionThis trial will provide new and much-needed empirical evidence about two patient-facing ACP approaches that successfully overcome limitations of traditional written advance directives but entail very different investments of time and resources. It is innovative in using mixed methods to evaluate not only the comparative effectiveness of these approaches, but also the contexts and mechanisms influencing effectiveness. Data from this study will inform clinicians, payers and health systems seeking to adopt and scale the most effective and efficient ACP strategy in real-world oncology settings.     

Collaboration and control: nurses' constructions of the role of family in nursing home care

AIM: This paper reports a study examining how nursing home staff experienced working with residents' families. BACKGROUND: Working collaboratively with the family in residential aged care to provide care is consistent with nursing philosophy. The quality of the experience, however, is frequently fraught with problems for both the family and staff involved. Little research has focused on the nature of family involvement in nursing homes from the perspective of nursing home staff. METHODS: The study adopted a naturalistic paradigm. Data were collected from 30 nursing home staff members drawn from a range of metropolitan and rural facilities in Victoria, Australia by means of conversational in-depth interviews. Issues concerned with how participants constructed the role of the family in the nursing home were explored. The data were collected in 2001-2002. RESULTS: Four key elements are presented in this paper: (1) Making the transition; (2) Forming ties; (3) Keeping them at a distance and (4) Unacceptable behaviour. Some nursing home staff have developed a substantive family orientation and had adopted practices which were inclusive of the family. Equally, many attitudes which cast the family into an adversarial and competitive role were noted, and many staff members outlined practices which were indicative of a need to control the family. CONCLUSION: A rhetoric of family partnerships is prevalent in some nursing homes. The activities of staff in these homes are still primarily geared towards provision of physical care, and families' needs become secondary to getting the work done. A new model of practice is needed that sees working collaboratively with families as a legitimate and necessary part of the staff role.     

Increased knowledge makes a difference! – general practitioners’ experiences of pictorial information about subclinical atherosclerosis for primary prevention: an interview study from the VIPVIZA trial

ObjectivesTo explore how pictorial information on subclinical atherosclerosis affects GPs’ perception of patient cardiovascular disease (CVD) risk, their communication with patients, and GPs’ attitude to the treatment of CVD risk factors.Design, setting and subjectsFifteen individual interviews were conducted between March 2014 and December 2016, with GPs who had received pictorial information regarding their patients’ subclinical atherosclerosis. The pictorial information was also received by the patients together with written information regarding atherosclerosis and CVD risk prior to the appointment with their GP. The interviews were recorded, transcribed and analyzed using qualitative content analysis.ResultsThree categories were identified in the analysis. Increased knowledge makes a difference: When patients had more in-depth knowledge regarding atherosclerosis, the consultation became more patient-centered and moved towards shared decision making. This is real, not just a number: GPs described their risk assessment and the patient’s risk perception as more accurate with pictorial information about subclinical atherosclerosis. How to deal with the result – A passive to active approach: Some GPs acted promptly on the pictorial information while others took no action.Conclusion and implicationsPictorial information regarding patients’ subclinical atherosclerosis affected GPs’ assessment of CVD risk. The communication shifted towards shared decision-making although the GPs’ attitude to the result and treatment of CVD risk factors varied. Informing patients about examination results, both in writing and pictures, prior to a consultation can facilitate shared decision making and enhance preventive measures.Trial registrationhttps://clinicaltrials.gov/ct2/show/{"type":"clinical-trial","attrs":{"text":"NCT01849575","term_id":"NCT01849575"}}NCT01849575.

KEY POINTS

• Providing pictorial information about carotid ultrasound results and information regarding atherosclerosis to GPs and patients affects primary prevention:
• •Informing patients about examination results prior to a consultation can be useful in clinical practice to enhance preventive measures
• •GPs experienced that increased patient knowledge resulted in a more patient-centered consultation and improved shared decision-making
• •GPs described their risk assessment and patients’ risk perception as more accurate with pictorial information about subclinical atherosclerosis

     

护理人员对预立医疗照护计划认知与感受的Meta整合

目的 整合护理人员对预立医疗照护计划（advance care planning,ACP）的认知与感受,为国内ACP的开展提供借鉴。方法 检索涉及护理人员对ACP认知与感受的质性研究,数据库包括PubMed、Web of Science、The Cochrane Library、Embase、CINAHL、中国知网、万方数据库、维普数据库、中国生物医学文献服务系统,检索时限为建库至2022年7月。文献质量评价采用澳大利亚乔安娜布里格斯研究所（Joanna Briggs Institute,JBI）质性研究质量评价标准,采用汇集性Meta整合方法对文献进行归纳。结果 共纳入9篇文献,提取32个主题,归纳为8个类别,得到3个整合结果：护理人员对ACP的认知、护理人员对实施ACP的益处感知、护理人员视角下实施ACP面临的现实困境。结论 ACP的实施受患者、疾病、社会支持等多方面的影响,多学科共同协作、加强护理人员ACP的培训、缓解ACP的现实困境是顺利实施ACP的保障。     

Family involvement in timely detection of changes in health of nursing homes residents: A qualitative exploratory study

Aims and objectives

To explore family perspectives on their involvement in the timely detection of changes in their relatives' health in UK nursing homes.

Background

Increasingly, policy attention is being paid to the need to reduce hospitalisations for conditions that, if detected and treated in time, could be managed in the community. We know that family continue to be involved in the care of their family members once they have moved into a nursing home. Little is known, however, about family involvement in the timely detection of changes in health in nursing home residents.

Design

Qualitative exploratory study with thematic analysis.

Methods

A purposive sampling strategy was applied. Fourteen semi‐structured one‐to‐one interviews with family members of people living in 13 different UK nursing homes. Data were collected from November 2015–March 2016.

Results

Families were involved in the timely detection of changes in health in three key ways: noticing signs of changes in health, informing care staff about what they noticed and educating care staff about their family members' changes in health. Families suggested they could be supported to detect timely changes in health by developing effective working practices with care staff.

Conclusion

Families can provide a special contribution to the process of timely detection in nursing homes. Their involvement needs to be negotiated, better supported, as well as given more legitimacy and structure within the nursing home.

Relevance to clinical practice

Families could provide much needed support to nursing home nurses, care assistants and managers in timely detection of changes in health. This may be achieved through communication about their preferred involvement on a case‐by‐case basis as well as providing appropriate support or services.     

Personal responsibility for health? A phenomenographic analysis of general practitioners’ conceptions

ObjectiveTo analyse and describe general practitioners’ perceptions of the notion of a ‘personal responsibility for health’.DesignInterview study, phenomenographic analysis.SettingSwedish primary health care.SubjectsGeneral Practitioners (GPs).Main outcome measuresUsing the phenomenographic method, the different views of the phenomenon (here: personal responsibility for health) were presented in an outcome space to illustrate the range of perceptions.ResultsThe participants found the notion of personal responsibility for health relevant to their practice. There was a wide range of perceptions regarding the origins of this responsibility, which was seen as coming from within yourself; from your relationships to specific others; and/or from your relationship with the generalized other. Furthermore, the expressions of this responsibility were perceived as including owning your health problem; not offloading all responsibility onto the GP; taking active measures to keep and improve health; and/or accepting help in health. The GP was described as playing a key role in shaping and defining the patient’s responsibility for his/her health. Some aspects of personal responsibility for health roused strong emotions in the participants, especially situations where the patient was seen as offloading all responsibility onto the GP.ConclusionThe notion of personal responsibility for health is relevant to GPs. However, it is open to a broad range of interpretations and modulated by the patient-physician interaction. This may make it unsuitable for usage in health care priority settings. More research is mandated to further investigate how physicians work with patient responsibility, and how this affects the patient-physician relationship and the physician’s own well-being.

Key Points

• The notion of personal responsibility for health has relevance for discussions about priority setting and person-centred care.
• This study, using a phenomenographic approach, investigated the views of Swedish GPs about the notion of personal responsibility for health.
• The participants found the notion relevant to their practice. They expressed a broad range of views of what a personal responsibility for health entails and how it arises. The GP was described as playing a key role in shaping and defining the patient’s responsibilities for his/her health.
• The notion was emotionally charged to the participants, and when patients were seen as offloading all responsibility onto the GP this gave rise to frustration.

     

Advance Directives in Japanese Nursing Homes

ContextAdvance directives are poorly understood in Japanese nursing homes. In April 2006, additional funding for end-of-life care became available as the first support for terminal care at Japanese nursing homes.ObjectivesThe objectives of this study were to investigate the adoption of advance directives by Japanese nursing homes, the effect of additional funding for end-of-life care in nursing homes from long-term care insurance on the use of advance directives, and the types of directives used.MethodsA nationwide questionnaire survey of nursing homes was performed in Japan. The participants were 913 nursing homes. We investigated the prevalence of advance directives, details of the directives, and demographic data of the responders.ResultsAdvance directives were used in 58.4% of nursing homes. The timing of introduction of the directives and the results of multivariate analysis at the facility level suggested a relation between the availability of additional funding for end-of-life care and the adoption of advance directives. Most nursing homes used instructional directives, especially directives providing an explanation and informed consent for end-of-life care in the nursing home.ConclusionMore than half of Japanese nursing homes have introduced advance directives, and additional funding for end-of-life care is related to their introduction. Most nursing homes have adopted instructional directives, especially those providing an explanation and informed consent regarding end-of-life care at the nursing home.     

Preconditions for successful advance care planning in nursing homes: A systematic review

ObjectivesThere is growing evidence of the potential effectiveness of advance care planning. Yet important knowledge gaps remain regarding the preconditions for successful implementation of advance care planning in the nursing home setting. We aim to identify the preconditions related to successful advance care planning in the nursing home setting. By specifying those, we would be able to make well-founded choices for the future design and planning of advance care planning intervention programs.DesignA systematic review.Data sourcesPubMed, PsycINFO, EMBASE and CINAHL.Review methodsTwo authors independently screened publications. One author assessed methodological quality and extracted textual data, which was double-checked for a random sample. We extracted textual data and used thematic synthesis to identify “preconditions”, defined as requirements, conditions and elements necessary to achieve the desired outcome of advance care planning, i.e. attaining concordance between residents' preferences and actual care or treatment received at the end of life.Main findingsBased on 38 publications, we identified 17 preconditions at five different levels: resident, family, health-care professional, facility and community. Most preconditions were situated on multiple levels but the majority addressed professionals and the nursing home itself. We summarized preconditions in five domains: to have sufficient knowledge and skills, to be willing and able to participate in advance care planning, to have good relationships, to have an administrative system in place, and contextual factors supporting advance care planning within the nursing home.ConclusionThere are multiple preconditions related to successfully implementing advance care planning in the complex nursing home setting that operate at micro, meso and macro level. Future interventions need to address these multiple domains and levels in a whole-system approach in order to be better implementable and more sustainable, while simultaneously target the important role of the health-care professional and the facility itself.