Review
Ethical issues experienced by healthcare workers in nursing homes: Literature review
Nursing Ethics 1–17 ª The Author(s) 2015 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733015576357 nej.sagepub.com
Deborah HL Preshaw, Kevin Brazil and Dorry McLaughlin Queen’s University Belfast, UK
Andrea Frolic Hamilton Health Sciences, Canada
Abstract Background: Ethical issues are increasingly being reported by care-providers; however, little is known about the nature of these issues within the nursing home. Ethical issues are unavoidable in healthcare and can result in opportunities for improving work and care conditions; however, they are also associated with detrimental outcomes including staff burnout and moral distress. Objectives: The purpose of this review was to identify prior research which focuses on ethical issues in the nursing home and to explore staffs’ experiences of ethical issues. Methods: Using a systematic approach based on Aveyard (2014), a literature review was conducted which focused on ethical and moral issues, nurses and nursing assistants, and the nursing home. Findings: The most salient themes identified in the review included clashing ethical principles, issues related to communication, lack of resources and quality of care provision. The review also identified solutions for overcoming the ethical issues that were identified and revealed the definitional challenges that permeate this area of work. Conclusions: The review highlighted a need for improved ethics education for care-providers. Keywords Ethical issues, ethics, literature review, nurses, nursing assistants, nursing homes
Introduction Demographic trends show that people are living longer, but they require more healthcare support due to their increasing medical complexity. An estimated 4 million adults in the United Kingdom aged 65 years old and over have a limiting longstanding illness,1 and the number of residents receiving care in residential and nursing care is continuing to rise. A survey by the Royal College of Nursing2 indicated that almost half of nursing homes in the United Kingdom reported a shortage of nursing staff as a major issue, and the mismatch between need and supply is having a detrimental impact on care quality. In this context, it is not surprising that there has been an increase in reports of ethical issues from care-providers, yet research on this
Corresponding author: Deborah HL Preshaw, School of Nursing and Midwifery, Queen’s University Belfast, Medical Biology Centre, 97 Lisburn Road, Belfast BT9 7BL, UK. Email: [email protected]
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issue has been overlooked. A literature review would be instrumental in synthesising what is already known about ethical issues in nursing homes. However, no such review appears to have been conducted previously.
Review Aim This review aims to identify prior research focussing on ethical issues within the nursing home setting and to explore nursing home staffs’ experiences of ethical issues. Specific questions that guided this review were as follows: What factors influence the likelihood of experiencing an ethical issue? What is the nature of ethical issues experienced in nursing homes?
Search strategy An extensive search guided by Aveyard3 implemented four techniques. Electronic databases (CINAHL, MEDLINE, Web of Knowledge and PsycINFO), reference lists and frequently cited journals were explored, and subject experts were contacted during January and February 2014. The following keywords were used: ‘moral*’, ‘ethic*’, ‘nursing homes’, ‘long term care*’, ‘nurs*’, ‘nursing assistant’ and ‘caregivers’. Papers were included if they were research papers, published in English after 2000, included participants who were formal caregivers, were focussed on nursing homes, and reported on ethical or moral issues. Papers which did not meet these criteria on any aspect were excluded. Any papers published prior to 2000 retrieved through reference searching were also included.
Methodology In total, 371 papers were identified. Initially, studies were evaluated based on titles and abstracts against the inclusion criteria. Irrelevant papers and duplicates were excluded. The complete text of the remaining articles is retrieved and summarised in data extraction tables (Appendix 1). Independent checks by the research team resulted in 37 papers being included in the final review. These papers were critically appraised using the Critical Appraisal Skills Programme UK Qualitative Checklist (www.casp-uk.net) and Greenhalgh’s4 guide to critically appraising and reporting questionnaire research. The Critical Appraisal Skills Programme tool can be found on the website http://www.casp-uk.net/ however the specific link to the PDF of the tool is http://media.wix.com/ugd/dded87_29c5b002d99342f788c6ac670e49f274.pdf.
Results From the articles retrieved, 20 were conducted within Scandinavian countries, 7 from the United States and the remaining were from the United Kingdom (3), the Netherlands (3), Israel (2), Canada (1) and Switzerland (1). The views of nurses, healthcare-assistants, residents, doctors, managers, relatives, ministers, social workers, physiotherapists, non-care staff, psychologists and policy-makers were expressed in the retrieved articles; however, the focus of this review is on the issues expressed by nurses and healthcare-assistants or their equivalent roles. A total of 25 papers used a qualitative methodology, 10 were quantitative and 2 used mixed-methods. Frequently utilised designs included phenomenology (8), case studies (3) and broad exploration and description studies (3). Alternative designs included comparative (2), observation (2), ethnography (1) and
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grounded theory (1). One paper used moral case deliberation (MCD) Sessions as their design and 4 papers did not report their design. Many papers used a combination of methods. Interviews were the most popular method of data collection, being utilised in 18 studies. A total of 10 studies used questionnaires, some of which were validated and some were purposively designed for the specific study. Observation was incorporated into a further 7 papers and the remaining papers used case studies (2), vignettes (2), focus groups (2) or essays (1).
Methodological issues Overall, the quality of the papers included in the review was relatively high. Using Critical Appraisal Tools,4,5 only 4 papers were deemed of low quality, 22 of medium quality and 11 were high quality. This review retrieved a number of empirical papers reporting on the population, outcome and environment of interest. While some studies offered contradicting information, many supported the findings from other papers and similar themes emerged across the literature. The most pertinent methodological issue was the diversity of definitions for ethical issues or, in many cases, a lack of operationalisation of the term. This made it more challenging to compare and summarise findings. Specific issues associated with qualitative studies included the small sample size, limited sites within each study, the use of convenience sampling and unclear procedural descriptions making the papers hard to replicate or generalise. Researcher reflexivity was also not reported in the majority of papers. The quantitative and mixed studies raised further methodological issues, for example, the lack of validated questionnaires. Additionally, small sample sizes were reported in most studies.
Themes Despite the diversity of methods, populations and countries, many common issues were raised. The themes are presented in order of frequency, the most frequently reported issues being reported first (Appendix 2). The most frequently reported issue pertained to the clash of ethical principles. Namely, how the ethics of respect for autonomy, beneficence, non-maleficence and justice can in practice conflict with each other, or other professional ethics including confidentiality, duty of care and fulfilment of professional responsibilities. Communication and decision-making involving care-providers, residents and relatives were found to be the second most frequently raised ethical issue. Lack of resources including knowledge, finances, time and access to doctors were found as the third most frequently cited issue, often leading to an inability to attend to individual needs or balance multiple residents’ wellbeing. The last prominent set of issues was related to the quality of care provision available including service and treatment issues. Ageism was mentioned in only three articles; however, it may contribute to many of the other issues raised. Finally, solutions to ethical issues were mentioned in six of the articles and may provide guidance for future nursing practice.
Clashing ethical principles Medical ethics consider the four principles postulated by Beauchamp and Childress,6 which include respect for autonomy, beneficence, non-maleficence and justice. However, within healthcare, nursing ethics are also used to guide ethical thinking. In 2008, the Nursing and Midwifery Council7 defined nursing ethics as focussed on the relationships between individuals, promoting the health and wellbeing of your patients, acting with integrity, maintaining patient dignity and the ethics of everyday practice. Ethical issues most frequently result when principles clash with each other or with institutional policy.
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Respect for autonomy was specifically highlighted in over one-third of the articles to cause an ethical issue when it conflicted with duty of care,8–20 for example, when it was overridden to ensure the resident’s safety.20,21 The level of autonomy which is granted to a resident was found to be influenced by the careproviders’ moral outlook, the congruence of the request with the perceived best interests of the resident, staff workload and the residents’ competency.22 Beneficence and non-maleficence were most often discussed in terms of ‘duty of care’ and experienced more frequently by nurses than doctors.17 Nurses who were bound to act in the best interests of the resident and prevent them from coming to harm reported a conflict with other aspects of their professional responsibility such as a resident’s self-determination, for example, if they refused treatment.8 Justice, or acting fairly, was discussed least frequently in terms of an ethical principle; however, a lack of resources and the struggle to allocate them fairly from an organisational point of view were cited so frequently that it merited its own section and will be discussed at length later in the ‘Results’ section. The issue of just allocation of nursing home placements was raised by Fjelltun et al.23 Increasingly younger carers appeal decisions which prevents placement based on the needs of the older adult,23 leaving many staff feeling conflicted. Furthermore, Powers9 found, through a 2-year critical ethnography, that the norms and values within the community compromised the provision of fair and just care. Within the field of nursing ethics, confidentiality is vital in building a trusting relationship between staff and residents. However, when it conflicted with other ethical principles, it was deemed less important, for example, a nurse would disclose information to a doctor against the resident’s wishes.13 Support for this finding was offered by two quantitative studies, one based on 65 staff team responses to a questionnaire and the other from 150 nursing home staff responses to a questionnaire. They revealed that over 90% of respondents would break confidentiality to uphold their professional responsibilities, and ethical challenges associated with the duty of confidentiality were experienced ‘less than frequently’ by 60% of care-providers in the study.20,24
Communication and decision-making Decision-making. According to the Principles of Nursing Practice, informed decision-making regarding treatment and care should involve the full healthcare team, the resident and their family.25 Research suggests that nurses were more likely than doctors to include resident preferences in care decisions;17 however, this often left them feeling stuck ‘in the middle’ of the resident, relatives and other health professionals in their attempt to provide individualised care.26 The degree of nurse involvement in decision-making varied greatly between studies. Some felt they were advocates for the resident, whereas others felt much more distanced and acted as a facilitator to assist residents and families in making their own decisions.26 While the majority of residents receiving care wanted to participate in treatment decisions, most did not achieve their desired level of involvement.27 On many occasions, the relatives and doctor made the decisions without input from the resident.17,28,29 Careproviders also reported a similar lack of involvement in decision-making.27 Residents were least involved in decision-making when their capacity was questionable. In such instances, the nurse saw themselves as a strong advocate for the resident’s wishes and consequently played a greater role in decision-making, for example, when dementia was present or they were too ill to verbally communicate their desires.28 In these instances, the care-providers questioned who should make treatment-related decisions which caused conflict, especially when there were concerns that the resident may become confused or distressed.30 Even when resident capacity was present, including the resident in decision-making was still found to be challenging, particularly when the resident was unwilling to acknowledge readiness for death28 or when the health professionals had a ‘paternalistic’ attitude towards care.13,30
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While some papers reported limited inclusion of relatives,17 most papers reported some level of shared decision-making.24 Schaffer28 found that ethical issues arose when managing relatives’ over- or undertreatment requests which may not have been in the resident’s best interest. The fear of relatives contacting the media if they were unsatisfied with care provision had resulted in futile treatments being offered and the resident’s views being overlooked.17 Residents being overruled by relatives was also reported by McClement et al.29 and has been highlighted as an ethical issue. Despite these issues, nurses were committed to the coordination of decision-making processes for life prolonging treatment and care,31 suggesting that care-providers are aware of the importance of decisionmaking inclusive of both care-providers and recipients even if it can result in conflicting situations. Restraint. The issue of using restraint was repeatedly raised as an ethical issue for staff.9 Restraint has been defined as any action which restricts physical or psychological freedom, can be chemical or mechanical and may apply some form of physical or mental violence. It could be experienced positively, for example, when it provided safety or protection, when staff were protected from liability and when wellbeing was promoted.32 However, issues arose when it was used inconsistently or as part of daily routine without explanation. In particular, the use of chemical restraints, such as sedation, was problematic and left staff feeling guilty.12,33 Despite a desire to minimise restraint use, nurses were conflicted between the desire to preserve resident autonomy and ensure safety and comply with institutional policy. A discrepancy was found between professional values of nursing staff and their perception of the actual use of restraints in daily practice.34 Communication with other healthcare professionals. Communication within the healthcare team30 has been reported as a common ethical issue. A lack of communication or intervention during painful situations, and when a colleague requested the nurse to carry out an ethically questionable task, was experienced as ethically conflicting for nurses.19 Breakdowns in communication resulted in feelings of ‘not being heard’, which led to a sense of anger, powerlessness and bad conscience, and consequently increased staff turnover rate. Communication with the resident and their relatives. Nurses reported their role as a ‘middleman’ or facilitator of communication between families, residents and healthcare professionals.35 Conversations with the family and resident centred around pain management, avoiding unnecessary hospital admissions, life prolonging treatments and practical arrangements, both during the preliminary and terminal phases.36 Healthcare Aides felt they were more aware of the resident’s true wishes than the family as they spent more time together.29 Therefore, if the relative’s wishes were not reflective of the Healthcare Aide’s believed wishes, this resulted in an ethical issue. Disagreements between the nurse and the family have arisen when next-of-kin wanted to continue life prolonging treatment contrary to staff opinion.36 Ethical issues associated with informing relatives were experienced frequently by 55% of nursing assistants and 68% of nurses,24 leading to a desire to increase ethical competence and a request for issues to be dealt with more systematically.
Lack of resources Inadequate resources create issues for care-providers who want to provide excellent care for dying residents, meet the needs of others in their care and provide optimal comfort, but lack the resources to do so.29 Working with limited resources was deemed intolerable, especially when standards must be reduced in line with cutbacks.37 In 2013, Lillemoen and Pedersen24 reported the lack of resources as one of the most difficult challenges in care provision and, in particular, inadequate care due to lack of resources18 has been highlighted as a specific source of conflict.
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Lack of knowledge and education. Knowledge was seen to facilitate understanding of all perspectives14 and as a means of assisting in risk identification for residents with dementia.15 Doctors were more confident in nurses who received additional training in geriatric or palliative care, improving the overall quality of the coordination of care.31 While an increase in formal education was suggested by staff to improve confidence during emotionally challenging end-of-life conversations,36 inadequate knowledge was associated with unsatisfactory care. Increased knowledge of ethics was seen as a means of reducing challenges,18 which may explain why a professional need for knowledge was experienced.30 However, evidence suggests that nurses were often unaware of empirical information in various aspects of care.35 Furthermore, a lack of knowledge by short-term temporary staff, younger nurses and untrained staff has been associated with a lack of humane treatment which threatens the resident’s integrity.38 Lack of knowledge is associated with the prior and ongoing education of care-providers which may need to be addressed to improve this situation. Knowledge of the scope of nurse responsibility was also lacking, for example, their role as resident advocate,17 in providing spiritual care,28 in feeding decisions or discussing treatment risks,35 individual responsibility for moral judgements and actions that comport with morality,35 and what to do when their professional responsibility is undermined.24 Unmet needs and unclear boundaries regarding duty of care contributed to the ethical issues associated with managing a personal response to care.16,28 A lack of ethical education was suggested to result in professional needs being overlooked, such as the need for knowledge and education, and the need to address the emotional aspect of caring.28,30,36 Lack of time. Studies considering time ethics found that talking together, finding calmness, meeting the person in their own time and knowing the person’s life history were meaningful aspects of good care provision; however, a lack of time would threaten this aspect of care.39 Juthberg et al.40 found that Finnish nursing staff did not feel they had sufficient time to provide adequate care, and this contributed most significantly to a troubled conscience. A lack of time due to insufficient resources and involvement in tasks other than direct care reduced the ability to provide stability and attention to residents.37 Understaffing caused tension between getting work done quickly and in an individualised manner as time allocation per resident was reduced.41 Access to doctors. Many benefits were reported in nursing homes in Norway when access to physicians was high. In nursing homes where physicians held higher percentage posts, advanced directives were more likely to be discussed on admission, medical records were up to date, residents were involved in decision-making where possible and the roles and responsibilities of the healthcare team were clearly defined.31 When doctor visits averaged 4 to 6 times a week, a position of good coordination of care was described. By increasing the doctor–patient ratio, Gjerberg et al.36 found an increase in the presence of guidelines for conversing with next of kin when the residents were in an end stage of life phase. However, despite the importance of a doctor’s presence, many studies revealed that access to a doctor was not always possible. Dreyer et al.31 found that 80% of nursing homes in Norway had one doctor visit per week which was deemed very limiting when issues regarding life prolonging treatment were raised. Decision-making appeared less inclusive of the resident and the doctor did not know the resident sufficiently to reach a satisfactory level of individualised care, sudden illness was not planned for, and this resulted in an increase of unplanned admissions. Despite doctors being formally in charge of treatment decisions, nurses saw themselves as spending more time with the resident and having a better understanding of their wishes.17 Poor resident–doctor communication was also witnessed due to limited doctor availability.28 Lack of finance. The lack of financial support could encompass all previous resource issues. Lacking financial resources was experienced as a major limiter of achieving best care33 and limited the beds available
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causing strain during nursing home placement.23 Nursing homes are unable to pay for more staff which would alleviate many of the other ethical issues associated with limited resources. Improving how current resources are used and reducing the pressure on care-providers may help to ease the financial issues reported. Inability to meet individual needs. A consequence of limited resources was often the inability to meet individual needs of the residents and balance the needs of multiple residents. The nursing home structure reflects a system-driven process which has little time for individualised, resident-centred care.42 This approach has resulted in ethical issues for care-providers who strive to provide high-quality, individualised care while conforming to the structure and culture of the organisation. Van der Dam et al.43 reflected upon the organisational context, within nursing homes and care homes, of scarcity of staff and space, multiple demands, a mismatch between the care needed and provided and the social climate as areas requiring moral deliberation. Nursing home residents share a communal living space with its own rhythms and structured activities which may interfere with individual preferences.9 Nurses have been provided with a set routine,. and any deviations could sometimes be perceived as problematic. As a result, the provision of perfunctory care was evident as care-providers were just ‘going through the motions’.29,38 Ethical issues arose when choosing between acting in one resident’s best interests and preventing other residents from coming to harm,12 when using restraints to prevent harm,19 when all residents want something at once or when a resident expects staff to focus more attention on them than others.16 Balancing multiple residents’ wellbeing was problematic when it conflicted with the concept of patient-centred care, for example, if a relative made a request which would compromise the wellbeing of other residents.10,32 Reports of not taking responsibility for a resident’s wellbeing12 were also drawn out from the literature. Staff members did not feel responsible for facilitating a resident’s request to smoke out of his room which reflected a lack of responsibility to a resident’s selfdetermination.
Quality of care provision Quality of person-centred care. Care within the nursing home aims to be individualised and person-centred, meeting their needs on a physical, social, spiritual and psychological level; however, some of the studies reported difficulties in fulfilling each of these types of care. The presence of a poor psychosocial environment resulted in anxiety, restlessness and inadequate psychosocial care in one Scandinavian nursing home study.15,18 The inability to provide spiritual care caused further ethical issues for nurses in a Norwegian nursing home who believed it was part of their practice.12 The challenge of providing individualised care increases further when the resident resists care, for example, when a resident has dementia.9 Restraint was suggested as appropriate when a resident resists an activity that they usually enjoy and this aims to get them started on the activity; however, restraint was often an issue for staff and could lead to mistrust.33 Egede-Nissen et al.39 found time to be an important method to avoid coercion when residents resisted care. Quality of death was identified as a source of ethical issues. Decisions concerning life prolonging treatment, hydration, nutrition, euthanasia and stopping treatment were a frequently reported source of conflict.30 Residents complained their needs were not being met,37 for example, limited and insufficient pain management, which was distressing for care-providers.28,29,36,41,44 Preserving integrity and dignity. Integrity incorporates privacy, autonomy, self-respect and the values the person espouses, and ethical issues resulted when nurses felt the resident’s integrity was not respected.
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Teeri et al.38,44 highlighted three ethically problematic subtypes of integrity: psychological, physical and social. Psychological integrity was compromised when short-term or younger staff failed to show humane treatment resulting in human dignity being overlooked. Staff shortages led to a lack of individualised care and a risk of physical abuse which prevented physical integrity from being respected. Finally, upholding social integrity was difficult due to time pressures and staff shortages, causing nurses to downplay the importance of resident interaction with the outside world. The resident’s social integrity was impacted through isolation from the outside world,24,38 for example, not taking patients on day trips in case they exhibit difficult behaviour.12 Additionally, Johansson et al.15 found that balancing integrity with other principles such as resident autonomy, in a situation when falls were a risk, provided further issues. These violations may be linked to the culture and resources of the nursing home. The research suggests a struggle between balancing individual wellbeing and respecting other residents’ wellbeing, and the potentially detrimental impact on dignity, for example, when a resident’s family requested that they were moved to an open ward despite the staff concluding that they were better suited in a private ward.10 While nurses understood that dignity could be upheld via caring by advocacy,14 respecting dignity became more challenging when the culture of the nursing home involved open use of restraint, a system-driven approach to care and overlooking resident wishes.38 Furthermore, understaffing and the feeling of chaos, resulting from multiple resident groups being simultaneously cared for, compromised individual resident’s dignity.19 Ethics environment. The organisation’s ethical structure has clear implications for staff and the residents’ experiences of ethical issues. McDaniel et al.45 found a positive correlation between the ethics environment in long-term care and the residents’ opinion on care and mental health status, making it a crucial factor to consider when exploring the organisational structure and quality-of-care provision.
Ageism: the silent contributor Ageist assumptions were only discussed directly in one study which found that qualified staff had fewer ageist assumptions than non-qualified staff. Ageist assumptions appeared to be present in the two care homes studied by Dunworth and Kirwan.20 A general consensus of ageist assumptions was drawn out which revolved around deteriorating physical, mental and social status. Despite only being briefly mentioned, these themes are important as they express the environment in which this research has been placed. Enes and De Vries30 uncovered a theme of ‘society’s needs’, as an ethical issue for two nurses. This incorporated the medicalisation of death, the taboo of death and the opinion that dying is not seen as part of life. The cultural taboo of death was also revealed through Schaffer’s28 qualitative exploration of ethical issues in end-of-life care. A reluctance to talk about death was found in 6 out of 36 interviewees for both personal and cultural reasons.
Discussion The review revealed that internationally there is a paucity of research on ethical issues within nursing homes. While Scandinavian countries and the United States had published most articles, the United Kingdom is yet to consider this area in the same depth. Given the reported impact of ethical issues and the lack of research, justification has been provided for researchers to address the ethical issues within the nursing home and find new ways to address the impact. The main issues relate to conflicting ethical principles, communication and decision-making, lack of resources, quality of care provision and the silent contributor of ageism. This review has synthesised the ethical issues reported throughout the international nursing home literature and presented them in order of frequency, showing which may need addressed most
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urgently. The main challenge experienced during this review was the diversity of expressions for ethical issues. Ethical and moral dilemmas, challenges, conflicts, issues and distress are only a few of the expressions witnessed in this review. Terms were used interchangeably in a single paper and often without the benefit of definition. Many of these terms have been used in the current review to reflect the original papers; however, to overcome this major issue when reviewing ethical literature, it is necessary to offer a clear definition of what an ethical issue in nursing is and use this definition when conducting nursing research. Based on this literature review, an ethical issue has been defined as a problem or difficulty experienced, or a point of clarification required, relating to any aspect of the ethical principles or duty of care. These issues can include respecting autonomy, how to act in the resident’s best interest, how to prevent the resident coming to harm, showing respect for residents and how to meet your professional responsibility’.
Implications for nursing education and research This review has highlighted the need to improve ethics education for registered nurses and healthcareassistants. Many of the ethical issues may be effectively dealt with through opportunities for communicating these issues. Solutions to ethical issues have been suggested in a small selection of retrieved articles. Advanced directives were suggested as a method to alleviate moral ambiguity and protect resident autonomy.8 Sellevold et al.46 found communicating with residents experiencing dementia to be an essential part of quality care and could potentially reduce ethical issues. The communication strategy of negotiation, explanation and restraint33 aimed to protect resident autonomy and prevent the repetition of a previously traumatic experience. MCD47 is a communication-based strategy aiming to assist careproviders in tackling moral issues through improved deliberation with colleagues. However, careproviders reported it would be too difficult to implement in practice due to the lack of time available.47 The potential impracticality of this method highlights the requirement of future interventions to be time and cost efficient; however, it is still possible that improved communication on moral issues may increase the feeling of professional security and confidence in ethical dilemmas. Finally, positive dialogue, taking the next-of-kin seriously and finding time to listen may assist in managing dilemmas and in reducing the emotional challenges associated with disagreements with the next-of-kin.18 Further research could explore what ethical issues care-providers deal with most frequently and develop recommendations for a redistribution of resources in nursing home care. Finally, the larger issues of ageism may to be addressed through continued education. Conflict of interest The authors declare that they have no conflict of interest. Funding This review was funded by Queen’s University Belfast. References 1. Age UK. Later Life in the United Kingdom [internet]. London: Age UK; 2015 February. Available from http:// www.ageuk.org.uk/Documents/EN-GB/Factsheets/Later_Life_UK_factsheet.pdf?dtrk=true. 2. Royal College of Nursing. RCN Policy Unit Policy Briefing 04/2010 Care homes under pressure – an England report. London: Royal College of Nursing, 2010, pp. 1–18. 3. Aveyard H. Doing a literature review in health and social care: a practical guide. 3rd ed. Maidenhead: Open University Press, 2014. 4. Greenhalgh T. How to read a paper: the basics of evidence based medicine. 4th ed. Chichester: Wiley-Blackwell, 2010.
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5. Critical Appraisal Skills Programme (CASP) 2014. CASP Checklists (http://media.wix.com/ugd/dded87_ 29c5b002d99342f788c6ac670e49f274.pdf) Oxford. CASP. 6. Beauchamp TL and Childress JF. Principles of biomedical ethics. 6th ed. New York: Oxford University Press, 2009. 7. Nursing and Midwifery Council. The code standards of conduct, performance and ethics for nurses and midwives. London: Nursing and Midwifery Council, 2008. 8. Linzer N, Samuel J and Sable J. Judaism, professional intervention, and ethics in long-term care. J Pastoral Care 2000; 54(1): 33–43. 9. Powers BA. Ethnographic analysis of everyday ethics in the care of nursing home residents with dementia: a taxonomy. Nurs Res 2001; 50(6): 332–339. 10. Tabak N and Shemesh-Kigli R. Sexuality and Alzheimer’s disease: can the two go together? Nurs Forum 2006; 41(4): 158–166. 11. Bolmsjo¨ IA, Edberg A-K and Sandman L. Everyday ethical problems in dementia care: a teleological model. Nurs Ethics 2006; 13(4): 340–359. 12. Solum E, Slettebø A and Hauge S. Prevention of unethical actions in nursing homes. Nurs Ethics 2008; 15(4): 536–548. 13. Dunworth M and Kirwan P. Ethical decision-making in two care homes. Pract Soc Work Action 2009; 21(4): 241–258. 14. Gustafsson C, Asp M and Fagerberg I. Municipal night nurses’ experience of the meaning of caring. Nurs Ethics 2009; 16(5): 599–612. 15. Johansson I, Bachrach-Lindstrom M, Struksnes S, et al. Balancing integrity vs. risk of falling – nurses’ experiences of caring for elderly people with dementia in nursing homes. J Res Nurs 2009; 14(1): 61–73. 16. VonDras D, Flittner D, Malcore S, et al. Workplace stress and ethical challenges experienced by nursing staff in a nursing home. Educ Gerontol 2009; 35(4): 321–339. 17. Dreyer A, Førde R and Nortvedt P. Life-prolonging treatment in nursing homes: how do physicians and nurses describe and justify their own practice? J Med Ethics 2010; 36(7): 396–400. 18. Gjerberg E, Førde R, Pedersen R, et al. Ethical challenges in the provision of end-of-life care in Norwegian nursing homes. Soc Sci Med 2010; 71(4): 677–684. 19. Jakobsen R and Sørlie V. Dignity of older people in a nursing home: narratives of care providers. Nurs Ethics 2010; 17(3): 289–300. 20. Dunworth M and Kirwan P. Do nurses and social workers have different values? An exploratory study of the care for older people. J Interprof Care 2012; 26(3): 226–231. 21. Weiner C, Tabak N and Bergman R. The use of physical restraints for patients suffering from dementia. Nurs Ethics 2003; 10(5): 512–525. 22. Van Thiel GJ and Van Delden JJ. The principle of respect for autonomy in the care of nursing home residents. Nurs Ethics 2001; 8(5): 419–431. 23. Fjelltun A-MS, Henriksen N, Norberg A, et al. Carers’ and nurses’ appraisals of needs of nursing home placement for frail older in Norway. J Clin Nurs 2009; 18(22): 3079–3088. 24. Lillemoen L and Pedersen R. Ethical challenges and how to develop ethics support in primary health care. Nurs Ethics 2013; 20(1): 96–108. 25. Manley K, Watts C and Cunningham G. Principles of Nursing Practice: development and implementation. Nurs Stand 2012; 25(27), http://www.rcn.org.uk/development/practice/principles (accessed 14 March 2014). 26. Lopez RP. Decision-making for acutely ill nursing home residents: nurses in the middle. J Adv Nurs 2009; 65(5): 1001–1009. 27. Be´langer E, Rodrı´guez C and Groleau D. Shared decision-making in palliative care: a systematic mixed studies review using narrative synthesis. Palliat Med 2011; 25(3): 242–261.
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28. Schaffer MA. Ethical problems in end-of-life decisions for elderly Norwegians. Nurs Ethics 2007; 14(2): 242–257. 29. McClement S, Lobchuk M, Chochinov HM, et al. ‘Broken covenant’: healthcare aides’ ‘experience of the ethical’ in caring for dying seniors in a personal care home. J Clin Ethics 2010; 21(3): 201–211. 30. Enes SPD and De Vries K. A survey of ethical issues experienced by nurses caring for terminally ill elderly people. Nurs Ethics 2004; 11(2): 150–164. 31. Dreyer A, Førde R and Nortvedt P. Ethical decision-making in nursing homes: influence of organizational factors. Nurs Ethics 2011; 18(4): 514–525. 32. Hantikainen V and Ka¨ppeli S. Using restraint with nursing home residents: a qualitative study of nursing staff perceptions and decision-making. J Adv Nurs 2000; 32(5): 1196–1205. 33. Slettebø A and Bunch EH. Ethics in nursing homes: experience and casuistry. Int J Nurs Pract 2004; 10(4): 159–165. 34. Weiner CR, Tabak NR and Bergman RR. Use of restraints on dementia patients: an ethical dilemma of a nursing staff in Israel. JONAS Healthc Law Ethics Regul 2003; 5(4): 87–93. 35. Lopez RP, Amella EJ, Mitchell SL, et al. Nurses’ perspectives on feeding decisions for nursing home residents with advanced dementia. J Clin Nurs 2010; 19(5–6): 632–638. 36. Gjerberg E, Førde R and Bjørndal A. Staff and family relationships in end-of-life nursing home care. Nurs Ethics 2011; 18(1): 42–53. 37. Ha¨ggstro¨m E and Kihlgren A. Experiences of caregivers and relatives in public nursing homes. Nurs Ethics 2007; 14(5): 691–701. 38. Teeri S, Leino-Kilpi H and Va¨lima¨ki M. Long-term nursing care of elderly people: identifying ethically problematic experiences among patients, relatives and nurses in Finland. Nurs Ethics 2006; 13(2): 116–129. 39. Egede-Nissen V, Jakobsen R, Sellevold GS, et al. Time ethics for persons with dementia in care homes. Nurs Ethics 2013; 20(1): 51–60. 40. Juthberg C, Eriksson S, Norberg A, et al. Perceptions of conscience, stress of conscience and burnout among nursing staff in residential elder care. J Adv Nurs 2010; 66(8): 1708–1718. 41. Kayser-Jones JS, Beard RL and Sharpp TJ. Case study: dying with a stage IV pressure ulcer (corrected) (published erratum appears in Am J Nurs 2009 March; 109(3): 13, and 2009 April; 109(4): 13). Am J Nurs 2009; 109(1): 40–49. 42. Froggatt K, Hockley J, Parker D, et al. A system lifeworld perspective on dying in long term care settings for older people: contested states in contested places. Health Place 2011; 17(1): 263–268. 43. Van der Dam SS, Abma TA, Kardol MJM, et al. ‘Here’s my dilemma’. Moral case deliberation as a platform for discussing everyday ethics in elderly care. Health Care Anal 2012; 20(3): 250–267. 44. Teeri S, Va¨lima¨ki M, Katajisto J, et al. Nurses perceptions of older patients integrity in long-term institutions. Scand J Caring Sci 2007; 21(4): 490–499. 45. McDaniel C, Roche JK and Veledar E. Ethics environment in long-term care. J Appl Gerontol 2011; 30(1): 67–84. 46. Sellevold GS, Egede-Nissen V, Jakobsen R, et al. Quality care for persons experiencing dementia: the significance of relational ethics. Nurs Ethics 2013; 20(3): 263–272. 47. Van der Dam SS, Abma TAT, Molewijk ACB, et al. Organizing moral case deliberation experiences in two Dutch nursing homes. Nurs Ethics 2011; 18(3): 327–340. ˚ and Bunch EH. Solving ethically difficult care situations in nursing homes. Nurs Ethics 2004; 11(6): 48. Slettebø A 543–552. ˚ , Sandman L, Andersson E, et al. Everyday ethics in the care of elderly people. Nurs Ethics 2006; 13(3): 49. Bolmsjo¨ IA 249–263.
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USA; 147-bed nursing homes
Explorative and descriptive; 14 RNs
Quantitative, descriptive; 135 RNs
Quantitative; 200 nursing staff
Unknown
Semistructured interviews, observation
observation
Questionnaire
Grounded theory
Grounded theory
MEDIUM
MEDIUM
MEDIUM
MEDIUM
MEDIUM
LOW
(continued)
HIGH Gatekeepers used, regional ethics research committee approval MEDIUM Protocol reviewed by ethics committee
Significant testing, Ethics committee Cronbach’s approval alpha Unknown Descriptive Semistatistics, structured content analysis questionnaire
Quantitative; 94 nurses, 31 Vignettes physicians
Unknown
Colaizzia’s pheno- Ethical permission menological collected method from participants Concurrent with IRB approval collection
Unstructured interviews
Unknown
Unknown
Ethical Critical appraisal considerationsa score
Observation
Data collection Data analysis
Ethnography; all residents, Observation, family and staff interviews
Slettebø and Norway; 1 nursing Investigate how nurses apply Qualitative comparative; Bunch 14 RNs home strategies to solve ethical (2004)48 dilemmas
Critical examination of ethical issues in daily living affecting residents with dementia Van Thiel The Netherlands; Gain insight into moral intuitions of caregivers and Van 50 nursing regarding patient Delden homes autonomy (2001)22 Weiner Investigate ethical dilemmas Israel; 3 nursing et al. for staff in realistic and homes, 3 (2003)34 idealistic situations medicine wards Enes and De England; 13 Examine experiences of Vries disclosure, determine elderly person (2004)30 other ethical issues, care units examine issues in respect to palliative care needs Slettebø and Norway; 3 nursing Explore nurses’ methods of Bunch homes solving ethically difficult (2004)33 care situations, present a model
Powers (2001)9
Hantikainen Switzerland; 4 and long-term Ka¨ppeli nursing home (2000)32 units
Case Study; one 89-yearTo discuss spiritual, old Jewish female professional and ethical approaches to working with elderly patients Explore staff perceptions of Phenomenological; 20 trained/untrained restraint and how these nursing staff govern decision-making
USA; skilled nursing facility
Linzer et al. (2000)8
Design and sample
Aims of the study
Country, setting
Author(s)/ (year)
Data extraction tables
Appendix 1
13
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Country, setting
Aims of the study
Design and sample
Finland; 4 longterm care wards
Finland; 4 longterm institutions
Sweden; public nursing home
Norway; nursing homes, homecare organisations, hospices, educational employment Norway; 1 nursing Investigate how caregivers emphasise daily dialogue home with two and mutual reflection to wards reach moral alternatives of action
Teeri et al. (2006)38
Teeri et al. (2007)44
Ha¨ggstro¨m and Kihlgren (2007)37
Schaffer (2007)28
Solum et al. (2008)12
Unknown
LOW
Critical appraisal Ethical considerationsa score
Observation, Hermeneutic interviews phenomenology; 7 staff interviewed
Phenomenological Research interpretive ethics committee approval
Content analysis
(continued)
MEDIUM
MEDIUM University ethics committee approval MEDIUM Qualitative Community Exploratory; 10 patients, Open Explore ethically content analysis health 17 relatives, 9 nurses interviews, problematic situations in centre ethics essays long-term care approval HIGH Ethics Face/content Explore how the integrity of Exploratory; 222 nursing Structured committee staff questionnaire validity, patients over 65 years is approval Cronbach’s maintained in long-term alpha, inferential care and descriptive statistics Unknown LOW Hermeneutic Descriptive; 20 caregivers, Interviews Increase understanding of theoretical 17 relatives (following how caregivers and analysis intervention) relatives experience older persons living in a public nursing home Ethical analysis Panel review MEDIUM SemiExploratory; 25 health Explore ethical problems framework structured professionals, 6 elders experienced by interviews and 5 relatives healthcare professions, elders and families in endof-life decision-making
Unknown
Data collection Data analysis
Case study; 1 resident and Unknown Israel; 1 ward for Explore decision-making Tabak and during ethical conflict his wife the mentally Shemeshfrail Kigli (2006)10 Observation Bolmsjo¨ Sweden; 1 nursing Describe and interpret the Descriptive and exploratory; staff plus home ward ethical milieu and analyse et al. 12 residents the situations (2006)49
Author(s)/ (year)
Appendix 1. (continued)
14
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Country, setting
Norway/Sweden; 10 nursing homes
USA; nursing homes
Johansson et al. (2009)15
VonDras et al. (2009)16
Dreyer et al. Norway; 10 (2010)17 nursing homes
Descriptive; 9 physicians, Study how physicians and 10 nurses nurses protect patient autonomy in end-of-life and how they justify their practice
Interviews
Observation, interviews
Observation, Generate a model of nursing Grounded theory; 10 nurses interviews behaviours/social processes inherent in decision-making for acutely ill residents Qualitative descriptive; 10 Interviews Explore RNs’ and nursing nurses, 18 nursing assistants’ experience of assistants caring for patients with dementia at risk of falling Exploratory; 44 nursing Self-report Explore workplace stress staff survey and ethical challenges in a nursing home
USA; nursing home
USA; 4 nursing homes
Interviews
KayserJones et al. (2009)41 Lopez (2009)26
To elucidate night nurses’ experiences of the meaning of caring
MEDIUM
Institutional approval
Unknown
HIGH
LOW
Regional ethics HIGH board approval
Unknown
(continued)
Phenomenography Gatekeepers, MEDIUM in line with ethical guidelines University MEDIUM Content, approval descriptive, correlation analysis Regional ethics MEDIUM Text analysis, approval constant comparison
Grounded theory
Unknown
Text analysis
Ethical analysis
HIGH
Critical appraisal Ethical considerationsa score
Qualitative Ethics content analysis committee approval
Data collection Data analysis
Ricoeur’s phenomenologicalhermeneutic approach; 7 nurses Examine ethical aspects of a Case study; one patient case study
UK; 2 urban care homes
Design and sample
Explore carers’ and nurses’ Exploratory; 11 carers and Interviews 11 nurses appraisals concerning nursing home placement and illuminate ethical issues in decision-making Survey; 65 nursing home Vignettes Test whether different staff values are apparent due to the trickle-down effect
Aims of the study
Sweden; medium municipality
Dunworth and Kirwan (2009)13 Gustafsson et al. (2009)14
Fjelltun et al. Norway; small municipality (2009)23
Author(s)/ (year)
Appendix 1. (continued)
15
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USA; 2 nursing homes
Lopez et al. (2010)35
Aims of the study
Understand nursing beliefs, knowledge and roles in feeding decisions for dementia patients McClement Canada; care Access lived experiences of et al. homes HCAs as they encounter (2010)29 ethically difficult end-oflife situations Juthberg Sweden; Describe and compare et al. municipality patterns of perceptions of (2010)40 conscience, stress of conscience and burnout in relation to occupational belonging Gjerberg Norway; 469 Gain a comprehensive et al. nursing homes understanding of how (2010)18 nursing homes practice end-of-life care Jakobsen Norway; 1 nursing Illuminate ethically difficult and Sørlie home situations experienced by (2010)19 care-providers Van der Netherlands; 2 Evaluate one way of Dam et al. nursing homes implementing MCD (2011)47 Gjerberg Norway; 364 Examine involvement of et al. nursing homes residents and relatives in (2011)36 end-of-life decisions and explore challenges Dreyer et al. Norway; 10 To explore how doctors and (2011)31 nursing homes nurses describe professional collaboration around dying patients McDaniel Examine the ethics USA; one longet al. environment among term care (2011)45 employees and patients, facility and explore the link to staffing outcomes
Country, setting
Author(s)/ (year)
Appendix 1. (continued)
Descriptive and inferential statistics
Survey; 51 employees, 68 residents
Questionnaire
Text analysis
Exploratory; 9 doctors, 10 Interviews nurses
Descriptive, inferential statistics
MEDIUM
IRB approval
(continued)
MEDIUM
MEDIUM
MEDIUM
HIGH
Ethics committee approval
Not needed
Observation
Naturalistic; all staff in each nursing home (225) Survey; 664 staff
Questionnaire
Phenomenological- Ethics committee hermeneutic approval interpretation Iterative process Cases anonymised
MEDIUM
Not needed
Interviews
MEDIUM
HIGH
Ethics committee approval
Phenomenology; 23 staff members
Cross-sectional Inferential study statistics
Descriptive; 50 RNs, 96 nursing assistants
Inferential/ descriptive statistics
Interviews
Phenomenology; 12 healthcare aides
Survey; 664 nursing home Questionnaire staff
Interviews
HIGH
Critical appraisal Ethical considerationsa score
University Iterative approval description, analysis and interpretation Van Manen’s line Institutional by line approach approval
Data collection Data analysis
Descriptive; 5 RNs, 6 LPNs
Design and sample
16
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Country, setting
Interviews
Questionnaire, 2 focus groups
Exploratory; 12 healthcare Interviews Explore characteristics of providers good care experienced by healthcare providers
MCD sessions
Questionnaire survey instrument
Norwegian Social Sciences Data Services approval
HIGH
MEDIUM Informed verbal/ written consent Regional ethics HIGH committee approval
Phenomenological- Board approval MEDIUM hermeneutic analysis
Ricoeur’s phenomenologicalhermeneutic interpretation Descriptive/ inferential statistics
Conventional qualitative analysis
HIGH
Critical appraisal Ethical considerationsa score
Analysed by ethical Unknown theory in MS excel
Data collection Data analysis
IRB: institutional review board; RNs: registered nurses; LPNs: licensed practical nurses; HCAs: healthcare-assistants; MCD: moral case deliberation. a All articles collected informed consent unless ‘unknown’ was stated.
Sellevold et al. (2013)46
Design and sample
Survey; 65 full time staff Explore values of staff in homes which have differently qualified managers Descriptive; 60 MCD Present an overview of group participants issues from participants of an MCD project
Aims of the study
Survey; 323 employees Explore how frequent/ prominent ethical challenges are in primary healthcare and how important primary healthcare workers think it is to deal better with these challenges/what kind of ethics support they want PhenomenologicalNorway; 2 nursing Describe care-providers’ hermeneutic approach; homes experiences with ethical 12 care-providers challenges in relationships with patients with dementia
UK; 2 care homes Dunworth and Kirwan (2012)20 Van der Netherlands; 2 Dam et al. nursing homes, (2012)43 a consortium of care homes EgedeNorway; 2 nursing Nissen homes et al. (2012)39 Lillemoen Norway; 1 and municipality Pedersen (2013)24
Author(s)/ (year)
Appendix 1. (continued)
Preshaw et al.
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Appendix 2 Frequency of issues raised Issue
Frequency
Ethical principles/professional ethics Ethical principles (generally) – conflict from complying with institutional policy, other principles Respect for autonomy Beneficence/non-maleficence Justice Duty of care/fulfilling professional responsibilities Confidentiality Communication and decision-making Communication with the team/colleagues Communication with the resident Communication with the family Decision-making and advanced directives Restraint Lack of resources Lack of knowledge Lack of finances Lack of time Lack of resources Access to doctors Attending to individual needs/needs not being met Quality of care provision Preserving integrity and dignity/respect Quality of person-centred care Ethics environment Ageism: the silent contributor Social issues (taboo of death, ageism) Solutions Negotiate, explain or restrain, or use previous experiences Moral case deliberation Openness in the working culture Time ethics
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18 17 7 2 7 3 5 6 8 10 8 6 3 7 4 4 7 9 7 1 3 1 2 1 1
Ethical issues experienced by healthcare workers in nursing homes: Literature review
Nursing Ethics 1–17 ª The Author(s) 2015 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733015576357 nej.sagepub.com
Deborah HL Preshaw, Kevin Brazil and Dorry McLaughlin Queen’s University Belfast, UK
Andrea Frolic Hamilton Health Sciences, Canada
Abstract Background: Ethical issues are increasingly being reported by care-providers; however, little is known about the nature of these issues within the nursing home. Ethical issues are unavoidable in healthcare and can result in opportunities for improving work and care conditions; however, they are also associated with detrimental outcomes including staff burnout and moral distress. Objectives: The purpose of this review was to identify prior research which focuses on ethical issues in the nursing home and to explore staffs’ experiences of ethical issues. Methods: Using a systematic approach based on Aveyard (2014), a literature review was conducted which focused on ethical and moral issues, nurses and nursing assistants, and the nursing home. Findings: The most salient themes identified in the review included clashing ethical principles, issues related to communication, lack of resources and quality of care provision. The review also identified solutions for overcoming the ethical issues that were identified and revealed the definitional challenges that permeate this area of work. Conclusions: The review highlighted a need for improved ethics education for care-providers. Keywords Ethical issues, ethics, literature review, nurses, nursing assistants, nursing homes
Introduction Demographic trends show that people are living longer, but they require more healthcare support due to their increasing medical complexity. An estimated 4 million adults in the United Kingdom aged 65 years old and over have a limiting longstanding illness,1 and the number of residents receiving care in residential and nursing care is continuing to rise. A survey by the Royal College of Nursing2 indicated that almost half of nursing homes in the United Kingdom reported a shortage of nursing staff as a major issue, and the mismatch between need and supply is having a detrimental impact on care quality. In this context, it is not surprising that there has been an increase in reports of ethical issues from care-providers, yet research on this
Corresponding author: Deborah HL Preshaw, School of Nursing and Midwifery, Queen’s University Belfast, Medical Biology Centre, 97 Lisburn Road, Belfast BT9 7BL, UK. Email: [email protected]
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issue has been overlooked. A literature review would be instrumental in synthesising what is already known about ethical issues in nursing homes. However, no such review appears to have been conducted previously.
Review Aim This review aims to identify prior research focussing on ethical issues within the nursing home setting and to explore nursing home staffs’ experiences of ethical issues. Specific questions that guided this review were as follows: What factors influence the likelihood of experiencing an ethical issue? What is the nature of ethical issues experienced in nursing homes?
Search strategy An extensive search guided by Aveyard3 implemented four techniques. Electronic databases (CINAHL, MEDLINE, Web of Knowledge and PsycINFO), reference lists and frequently cited journals were explored, and subject experts were contacted during January and February 2014. The following keywords were used: ‘moral*’, ‘ethic*’, ‘nursing homes’, ‘long term care*’, ‘nurs*’, ‘nursing assistant’ and ‘caregivers’. Papers were included if they were research papers, published in English after 2000, included participants who were formal caregivers, were focussed on nursing homes, and reported on ethical or moral issues. Papers which did not meet these criteria on any aspect were excluded. Any papers published prior to 2000 retrieved through reference searching were also included.
Methodology In total, 371 papers were identified. Initially, studies were evaluated based on titles and abstracts against the inclusion criteria. Irrelevant papers and duplicates were excluded. The complete text of the remaining articles is retrieved and summarised in data extraction tables (Appendix 1). Independent checks by the research team resulted in 37 papers being included in the final review. These papers were critically appraised using the Critical Appraisal Skills Programme UK Qualitative Checklist (www.casp-uk.net) and Greenhalgh’s4 guide to critically appraising and reporting questionnaire research. The Critical Appraisal Skills Programme tool can be found on the website http://www.casp-uk.net/ however the specific link to the PDF of the tool is http://media.wix.com/ugd/dded87_29c5b002d99342f788c6ac670e49f274.pdf.
Results From the articles retrieved, 20 were conducted within Scandinavian countries, 7 from the United States and the remaining were from the United Kingdom (3), the Netherlands (3), Israel (2), Canada (1) and Switzerland (1). The views of nurses, healthcare-assistants, residents, doctors, managers, relatives, ministers, social workers, physiotherapists, non-care staff, psychologists and policy-makers were expressed in the retrieved articles; however, the focus of this review is on the issues expressed by nurses and healthcare-assistants or their equivalent roles. A total of 25 papers used a qualitative methodology, 10 were quantitative and 2 used mixed-methods. Frequently utilised designs included phenomenology (8), case studies (3) and broad exploration and description studies (3). Alternative designs included comparative (2), observation (2), ethnography (1) and
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grounded theory (1). One paper used moral case deliberation (MCD) Sessions as their design and 4 papers did not report their design. Many papers used a combination of methods. Interviews were the most popular method of data collection, being utilised in 18 studies. A total of 10 studies used questionnaires, some of which were validated and some were purposively designed for the specific study. Observation was incorporated into a further 7 papers and the remaining papers used case studies (2), vignettes (2), focus groups (2) or essays (1).
Methodological issues Overall, the quality of the papers included in the review was relatively high. Using Critical Appraisal Tools,4,5 only 4 papers were deemed of low quality, 22 of medium quality and 11 were high quality. This review retrieved a number of empirical papers reporting on the population, outcome and environment of interest. While some studies offered contradicting information, many supported the findings from other papers and similar themes emerged across the literature. The most pertinent methodological issue was the diversity of definitions for ethical issues or, in many cases, a lack of operationalisation of the term. This made it more challenging to compare and summarise findings. Specific issues associated with qualitative studies included the small sample size, limited sites within each study, the use of convenience sampling and unclear procedural descriptions making the papers hard to replicate or generalise. Researcher reflexivity was also not reported in the majority of papers. The quantitative and mixed studies raised further methodological issues, for example, the lack of validated questionnaires. Additionally, small sample sizes were reported in most studies.
Themes Despite the diversity of methods, populations and countries, many common issues were raised. The themes are presented in order of frequency, the most frequently reported issues being reported first (Appendix 2). The most frequently reported issue pertained to the clash of ethical principles. Namely, how the ethics of respect for autonomy, beneficence, non-maleficence and justice can in practice conflict with each other, or other professional ethics including confidentiality, duty of care and fulfilment of professional responsibilities. Communication and decision-making involving care-providers, residents and relatives were found to be the second most frequently raised ethical issue. Lack of resources including knowledge, finances, time and access to doctors were found as the third most frequently cited issue, often leading to an inability to attend to individual needs or balance multiple residents’ wellbeing. The last prominent set of issues was related to the quality of care provision available including service and treatment issues. Ageism was mentioned in only three articles; however, it may contribute to many of the other issues raised. Finally, solutions to ethical issues were mentioned in six of the articles and may provide guidance for future nursing practice.
Clashing ethical principles Medical ethics consider the four principles postulated by Beauchamp and Childress,6 which include respect for autonomy, beneficence, non-maleficence and justice. However, within healthcare, nursing ethics are also used to guide ethical thinking. In 2008, the Nursing and Midwifery Council7 defined nursing ethics as focussed on the relationships between individuals, promoting the health and wellbeing of your patients, acting with integrity, maintaining patient dignity and the ethics of everyday practice. Ethical issues most frequently result when principles clash with each other or with institutional policy.
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Respect for autonomy was specifically highlighted in over one-third of the articles to cause an ethical issue when it conflicted with duty of care,8–20 for example, when it was overridden to ensure the resident’s safety.20,21 The level of autonomy which is granted to a resident was found to be influenced by the careproviders’ moral outlook, the congruence of the request with the perceived best interests of the resident, staff workload and the residents’ competency.22 Beneficence and non-maleficence were most often discussed in terms of ‘duty of care’ and experienced more frequently by nurses than doctors.17 Nurses who were bound to act in the best interests of the resident and prevent them from coming to harm reported a conflict with other aspects of their professional responsibility such as a resident’s self-determination, for example, if they refused treatment.8 Justice, or acting fairly, was discussed least frequently in terms of an ethical principle; however, a lack of resources and the struggle to allocate them fairly from an organisational point of view were cited so frequently that it merited its own section and will be discussed at length later in the ‘Results’ section. The issue of just allocation of nursing home placements was raised by Fjelltun et al.23 Increasingly younger carers appeal decisions which prevents placement based on the needs of the older adult,23 leaving many staff feeling conflicted. Furthermore, Powers9 found, through a 2-year critical ethnography, that the norms and values within the community compromised the provision of fair and just care. Within the field of nursing ethics, confidentiality is vital in building a trusting relationship between staff and residents. However, when it conflicted with other ethical principles, it was deemed less important, for example, a nurse would disclose information to a doctor against the resident’s wishes.13 Support for this finding was offered by two quantitative studies, one based on 65 staff team responses to a questionnaire and the other from 150 nursing home staff responses to a questionnaire. They revealed that over 90% of respondents would break confidentiality to uphold their professional responsibilities, and ethical challenges associated with the duty of confidentiality were experienced ‘less than frequently’ by 60% of care-providers in the study.20,24
Communication and decision-making Decision-making. According to the Principles of Nursing Practice, informed decision-making regarding treatment and care should involve the full healthcare team, the resident and their family.25 Research suggests that nurses were more likely than doctors to include resident preferences in care decisions;17 however, this often left them feeling stuck ‘in the middle’ of the resident, relatives and other health professionals in their attempt to provide individualised care.26 The degree of nurse involvement in decision-making varied greatly between studies. Some felt they were advocates for the resident, whereas others felt much more distanced and acted as a facilitator to assist residents and families in making their own decisions.26 While the majority of residents receiving care wanted to participate in treatment decisions, most did not achieve their desired level of involvement.27 On many occasions, the relatives and doctor made the decisions without input from the resident.17,28,29 Careproviders also reported a similar lack of involvement in decision-making.27 Residents were least involved in decision-making when their capacity was questionable. In such instances, the nurse saw themselves as a strong advocate for the resident’s wishes and consequently played a greater role in decision-making, for example, when dementia was present or they were too ill to verbally communicate their desires.28 In these instances, the care-providers questioned who should make treatment-related decisions which caused conflict, especially when there were concerns that the resident may become confused or distressed.30 Even when resident capacity was present, including the resident in decision-making was still found to be challenging, particularly when the resident was unwilling to acknowledge readiness for death28 or when the health professionals had a ‘paternalistic’ attitude towards care.13,30
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While some papers reported limited inclusion of relatives,17 most papers reported some level of shared decision-making.24 Schaffer28 found that ethical issues arose when managing relatives’ over- or undertreatment requests which may not have been in the resident’s best interest. The fear of relatives contacting the media if they were unsatisfied with care provision had resulted in futile treatments being offered and the resident’s views being overlooked.17 Residents being overruled by relatives was also reported by McClement et al.29 and has been highlighted as an ethical issue. Despite these issues, nurses were committed to the coordination of decision-making processes for life prolonging treatment and care,31 suggesting that care-providers are aware of the importance of decisionmaking inclusive of both care-providers and recipients even if it can result in conflicting situations. Restraint. The issue of using restraint was repeatedly raised as an ethical issue for staff.9 Restraint has been defined as any action which restricts physical or psychological freedom, can be chemical or mechanical and may apply some form of physical or mental violence. It could be experienced positively, for example, when it provided safety or protection, when staff were protected from liability and when wellbeing was promoted.32 However, issues arose when it was used inconsistently or as part of daily routine without explanation. In particular, the use of chemical restraints, such as sedation, was problematic and left staff feeling guilty.12,33 Despite a desire to minimise restraint use, nurses were conflicted between the desire to preserve resident autonomy and ensure safety and comply with institutional policy. A discrepancy was found between professional values of nursing staff and their perception of the actual use of restraints in daily practice.34 Communication with other healthcare professionals. Communication within the healthcare team30 has been reported as a common ethical issue. A lack of communication or intervention during painful situations, and when a colleague requested the nurse to carry out an ethically questionable task, was experienced as ethically conflicting for nurses.19 Breakdowns in communication resulted in feelings of ‘not being heard’, which led to a sense of anger, powerlessness and bad conscience, and consequently increased staff turnover rate. Communication with the resident and their relatives. Nurses reported their role as a ‘middleman’ or facilitator of communication between families, residents and healthcare professionals.35 Conversations with the family and resident centred around pain management, avoiding unnecessary hospital admissions, life prolonging treatments and practical arrangements, both during the preliminary and terminal phases.36 Healthcare Aides felt they were more aware of the resident’s true wishes than the family as they spent more time together.29 Therefore, if the relative’s wishes were not reflective of the Healthcare Aide’s believed wishes, this resulted in an ethical issue. Disagreements between the nurse and the family have arisen when next-of-kin wanted to continue life prolonging treatment contrary to staff opinion.36 Ethical issues associated with informing relatives were experienced frequently by 55% of nursing assistants and 68% of nurses,24 leading to a desire to increase ethical competence and a request for issues to be dealt with more systematically.
Lack of resources Inadequate resources create issues for care-providers who want to provide excellent care for dying residents, meet the needs of others in their care and provide optimal comfort, but lack the resources to do so.29 Working with limited resources was deemed intolerable, especially when standards must be reduced in line with cutbacks.37 In 2013, Lillemoen and Pedersen24 reported the lack of resources as one of the most difficult challenges in care provision and, in particular, inadequate care due to lack of resources18 has been highlighted as a specific source of conflict.
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Lack of knowledge and education. Knowledge was seen to facilitate understanding of all perspectives14 and as a means of assisting in risk identification for residents with dementia.15 Doctors were more confident in nurses who received additional training in geriatric or palliative care, improving the overall quality of the coordination of care.31 While an increase in formal education was suggested by staff to improve confidence during emotionally challenging end-of-life conversations,36 inadequate knowledge was associated with unsatisfactory care. Increased knowledge of ethics was seen as a means of reducing challenges,18 which may explain why a professional need for knowledge was experienced.30 However, evidence suggests that nurses were often unaware of empirical information in various aspects of care.35 Furthermore, a lack of knowledge by short-term temporary staff, younger nurses and untrained staff has been associated with a lack of humane treatment which threatens the resident’s integrity.38 Lack of knowledge is associated with the prior and ongoing education of care-providers which may need to be addressed to improve this situation. Knowledge of the scope of nurse responsibility was also lacking, for example, their role as resident advocate,17 in providing spiritual care,28 in feeding decisions or discussing treatment risks,35 individual responsibility for moral judgements and actions that comport with morality,35 and what to do when their professional responsibility is undermined.24 Unmet needs and unclear boundaries regarding duty of care contributed to the ethical issues associated with managing a personal response to care.16,28 A lack of ethical education was suggested to result in professional needs being overlooked, such as the need for knowledge and education, and the need to address the emotional aspect of caring.28,30,36 Lack of time. Studies considering time ethics found that talking together, finding calmness, meeting the person in their own time and knowing the person’s life history were meaningful aspects of good care provision; however, a lack of time would threaten this aspect of care.39 Juthberg et al.40 found that Finnish nursing staff did not feel they had sufficient time to provide adequate care, and this contributed most significantly to a troubled conscience. A lack of time due to insufficient resources and involvement in tasks other than direct care reduced the ability to provide stability and attention to residents.37 Understaffing caused tension between getting work done quickly and in an individualised manner as time allocation per resident was reduced.41 Access to doctors. Many benefits were reported in nursing homes in Norway when access to physicians was high. In nursing homes where physicians held higher percentage posts, advanced directives were more likely to be discussed on admission, medical records were up to date, residents were involved in decision-making where possible and the roles and responsibilities of the healthcare team were clearly defined.31 When doctor visits averaged 4 to 6 times a week, a position of good coordination of care was described. By increasing the doctor–patient ratio, Gjerberg et al.36 found an increase in the presence of guidelines for conversing with next of kin when the residents were in an end stage of life phase. However, despite the importance of a doctor’s presence, many studies revealed that access to a doctor was not always possible. Dreyer et al.31 found that 80% of nursing homes in Norway had one doctor visit per week which was deemed very limiting when issues regarding life prolonging treatment were raised. Decision-making appeared less inclusive of the resident and the doctor did not know the resident sufficiently to reach a satisfactory level of individualised care, sudden illness was not planned for, and this resulted in an increase of unplanned admissions. Despite doctors being formally in charge of treatment decisions, nurses saw themselves as spending more time with the resident and having a better understanding of their wishes.17 Poor resident–doctor communication was also witnessed due to limited doctor availability.28 Lack of finance. The lack of financial support could encompass all previous resource issues. Lacking financial resources was experienced as a major limiter of achieving best care33 and limited the beds available
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causing strain during nursing home placement.23 Nursing homes are unable to pay for more staff which would alleviate many of the other ethical issues associated with limited resources. Improving how current resources are used and reducing the pressure on care-providers may help to ease the financial issues reported. Inability to meet individual needs. A consequence of limited resources was often the inability to meet individual needs of the residents and balance the needs of multiple residents. The nursing home structure reflects a system-driven process which has little time for individualised, resident-centred care.42 This approach has resulted in ethical issues for care-providers who strive to provide high-quality, individualised care while conforming to the structure and culture of the organisation. Van der Dam et al.43 reflected upon the organisational context, within nursing homes and care homes, of scarcity of staff and space, multiple demands, a mismatch between the care needed and provided and the social climate as areas requiring moral deliberation. Nursing home residents share a communal living space with its own rhythms and structured activities which may interfere with individual preferences.9 Nurses have been provided with a set routine,. and any deviations could sometimes be perceived as problematic. As a result, the provision of perfunctory care was evident as care-providers were just ‘going through the motions’.29,38 Ethical issues arose when choosing between acting in one resident’s best interests and preventing other residents from coming to harm,12 when using restraints to prevent harm,19 when all residents want something at once or when a resident expects staff to focus more attention on them than others.16 Balancing multiple residents’ wellbeing was problematic when it conflicted with the concept of patient-centred care, for example, if a relative made a request which would compromise the wellbeing of other residents.10,32 Reports of not taking responsibility for a resident’s wellbeing12 were also drawn out from the literature. Staff members did not feel responsible for facilitating a resident’s request to smoke out of his room which reflected a lack of responsibility to a resident’s selfdetermination.
Quality of care provision Quality of person-centred care. Care within the nursing home aims to be individualised and person-centred, meeting their needs on a physical, social, spiritual and psychological level; however, some of the studies reported difficulties in fulfilling each of these types of care. The presence of a poor psychosocial environment resulted in anxiety, restlessness and inadequate psychosocial care in one Scandinavian nursing home study.15,18 The inability to provide spiritual care caused further ethical issues for nurses in a Norwegian nursing home who believed it was part of their practice.12 The challenge of providing individualised care increases further when the resident resists care, for example, when a resident has dementia.9 Restraint was suggested as appropriate when a resident resists an activity that they usually enjoy and this aims to get them started on the activity; however, restraint was often an issue for staff and could lead to mistrust.33 Egede-Nissen et al.39 found time to be an important method to avoid coercion when residents resisted care. Quality of death was identified as a source of ethical issues. Decisions concerning life prolonging treatment, hydration, nutrition, euthanasia and stopping treatment were a frequently reported source of conflict.30 Residents complained their needs were not being met,37 for example, limited and insufficient pain management, which was distressing for care-providers.28,29,36,41,44 Preserving integrity and dignity. Integrity incorporates privacy, autonomy, self-respect and the values the person espouses, and ethical issues resulted when nurses felt the resident’s integrity was not respected.
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Teeri et al.38,44 highlighted three ethically problematic subtypes of integrity: psychological, physical and social. Psychological integrity was compromised when short-term or younger staff failed to show humane treatment resulting in human dignity being overlooked. Staff shortages led to a lack of individualised care and a risk of physical abuse which prevented physical integrity from being respected. Finally, upholding social integrity was difficult due to time pressures and staff shortages, causing nurses to downplay the importance of resident interaction with the outside world. The resident’s social integrity was impacted through isolation from the outside world,24,38 for example, not taking patients on day trips in case they exhibit difficult behaviour.12 Additionally, Johansson et al.15 found that balancing integrity with other principles such as resident autonomy, in a situation when falls were a risk, provided further issues. These violations may be linked to the culture and resources of the nursing home. The research suggests a struggle between balancing individual wellbeing and respecting other residents’ wellbeing, and the potentially detrimental impact on dignity, for example, when a resident’s family requested that they were moved to an open ward despite the staff concluding that they were better suited in a private ward.10 While nurses understood that dignity could be upheld via caring by advocacy,14 respecting dignity became more challenging when the culture of the nursing home involved open use of restraint, a system-driven approach to care and overlooking resident wishes.38 Furthermore, understaffing and the feeling of chaos, resulting from multiple resident groups being simultaneously cared for, compromised individual resident’s dignity.19 Ethics environment. The organisation’s ethical structure has clear implications for staff and the residents’ experiences of ethical issues. McDaniel et al.45 found a positive correlation between the ethics environment in long-term care and the residents’ opinion on care and mental health status, making it a crucial factor to consider when exploring the organisational structure and quality-of-care provision.
Ageism: the silent contributor Ageist assumptions were only discussed directly in one study which found that qualified staff had fewer ageist assumptions than non-qualified staff. Ageist assumptions appeared to be present in the two care homes studied by Dunworth and Kirwan.20 A general consensus of ageist assumptions was drawn out which revolved around deteriorating physical, mental and social status. Despite only being briefly mentioned, these themes are important as they express the environment in which this research has been placed. Enes and De Vries30 uncovered a theme of ‘society’s needs’, as an ethical issue for two nurses. This incorporated the medicalisation of death, the taboo of death and the opinion that dying is not seen as part of life. The cultural taboo of death was also revealed through Schaffer’s28 qualitative exploration of ethical issues in end-of-life care. A reluctance to talk about death was found in 6 out of 36 interviewees for both personal and cultural reasons.
Discussion The review revealed that internationally there is a paucity of research on ethical issues within nursing homes. While Scandinavian countries and the United States had published most articles, the United Kingdom is yet to consider this area in the same depth. Given the reported impact of ethical issues and the lack of research, justification has been provided for researchers to address the ethical issues within the nursing home and find new ways to address the impact. The main issues relate to conflicting ethical principles, communication and decision-making, lack of resources, quality of care provision and the silent contributor of ageism. This review has synthesised the ethical issues reported throughout the international nursing home literature and presented them in order of frequency, showing which may need addressed most
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urgently. The main challenge experienced during this review was the diversity of expressions for ethical issues. Ethical and moral dilemmas, challenges, conflicts, issues and distress are only a few of the expressions witnessed in this review. Terms were used interchangeably in a single paper and often without the benefit of definition. Many of these terms have been used in the current review to reflect the original papers; however, to overcome this major issue when reviewing ethical literature, it is necessary to offer a clear definition of what an ethical issue in nursing is and use this definition when conducting nursing research. Based on this literature review, an ethical issue has been defined as a problem or difficulty experienced, or a point of clarification required, relating to any aspect of the ethical principles or duty of care. These issues can include respecting autonomy, how to act in the resident’s best interest, how to prevent the resident coming to harm, showing respect for residents and how to meet your professional responsibility’.
Implications for nursing education and research This review has highlighted the need to improve ethics education for registered nurses and healthcareassistants. Many of the ethical issues may be effectively dealt with through opportunities for communicating these issues. Solutions to ethical issues have been suggested in a small selection of retrieved articles. Advanced directives were suggested as a method to alleviate moral ambiguity and protect resident autonomy.8 Sellevold et al.46 found communicating with residents experiencing dementia to be an essential part of quality care and could potentially reduce ethical issues. The communication strategy of negotiation, explanation and restraint33 aimed to protect resident autonomy and prevent the repetition of a previously traumatic experience. MCD47 is a communication-based strategy aiming to assist careproviders in tackling moral issues through improved deliberation with colleagues. However, careproviders reported it would be too difficult to implement in practice due to the lack of time available.47 The potential impracticality of this method highlights the requirement of future interventions to be time and cost efficient; however, it is still possible that improved communication on moral issues may increase the feeling of professional security and confidence in ethical dilemmas. Finally, positive dialogue, taking the next-of-kin seriously and finding time to listen may assist in managing dilemmas and in reducing the emotional challenges associated with disagreements with the next-of-kin.18 Further research could explore what ethical issues care-providers deal with most frequently and develop recommendations for a redistribution of resources in nursing home care. Finally, the larger issues of ageism may to be addressed through continued education. Conflict of interest The authors declare that they have no conflict of interest. Funding This review was funded by Queen’s University Belfast. References 1. Age UK. Later Life in the United Kingdom [internet]. London: Age UK; 2015 February. Available from http:// www.ageuk.org.uk/Documents/EN-GB/Factsheets/Later_Life_UK_factsheet.pdf?dtrk=true. 2. Royal College of Nursing. RCN Policy Unit Policy Briefing 04/2010 Care homes under pressure – an England report. London: Royal College of Nursing, 2010, pp. 1–18. 3. Aveyard H. Doing a literature review in health and social care: a practical guide. 3rd ed. Maidenhead: Open University Press, 2014. 4. Greenhalgh T. How to read a paper: the basics of evidence based medicine. 4th ed. Chichester: Wiley-Blackwell, 2010.
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5. Critical Appraisal Skills Programme (CASP) 2014. CASP Checklists (http://media.wix.com/ugd/dded87_ 29c5b002d99342f788c6ac670e49f274.pdf) Oxford. CASP. 6. Beauchamp TL and Childress JF. Principles of biomedical ethics. 6th ed. New York: Oxford University Press, 2009. 7. Nursing and Midwifery Council. The code standards of conduct, performance and ethics for nurses and midwives. London: Nursing and Midwifery Council, 2008. 8. Linzer N, Samuel J and Sable J. Judaism, professional intervention, and ethics in long-term care. J Pastoral Care 2000; 54(1): 33–43. 9. Powers BA. Ethnographic analysis of everyday ethics in the care of nursing home residents with dementia: a taxonomy. Nurs Res 2001; 50(6): 332–339. 10. Tabak N and Shemesh-Kigli R. Sexuality and Alzheimer’s disease: can the two go together? Nurs Forum 2006; 41(4): 158–166. 11. Bolmsjo¨ IA, Edberg A-K and Sandman L. Everyday ethical problems in dementia care: a teleological model. Nurs Ethics 2006; 13(4): 340–359. 12. Solum E, Slettebø A and Hauge S. Prevention of unethical actions in nursing homes. Nurs Ethics 2008; 15(4): 536–548. 13. Dunworth M and Kirwan P. Ethical decision-making in two care homes. Pract Soc Work Action 2009; 21(4): 241–258. 14. Gustafsson C, Asp M and Fagerberg I. Municipal night nurses’ experience of the meaning of caring. Nurs Ethics 2009; 16(5): 599–612. 15. Johansson I, Bachrach-Lindstrom M, Struksnes S, et al. Balancing integrity vs. risk of falling – nurses’ experiences of caring for elderly people with dementia in nursing homes. J Res Nurs 2009; 14(1): 61–73. 16. VonDras D, Flittner D, Malcore S, et al. Workplace stress and ethical challenges experienced by nursing staff in a nursing home. Educ Gerontol 2009; 35(4): 321–339. 17. Dreyer A, Førde R and Nortvedt P. Life-prolonging treatment in nursing homes: how do physicians and nurses describe and justify their own practice? J Med Ethics 2010; 36(7): 396–400. 18. Gjerberg E, Førde R, Pedersen R, et al. Ethical challenges in the provision of end-of-life care in Norwegian nursing homes. Soc Sci Med 2010; 71(4): 677–684. 19. Jakobsen R and Sørlie V. Dignity of older people in a nursing home: narratives of care providers. Nurs Ethics 2010; 17(3): 289–300. 20. Dunworth M and Kirwan P. Do nurses and social workers have different values? An exploratory study of the care for older people. J Interprof Care 2012; 26(3): 226–231. 21. Weiner C, Tabak N and Bergman R. The use of physical restraints for patients suffering from dementia. Nurs Ethics 2003; 10(5): 512–525. 22. Van Thiel GJ and Van Delden JJ. The principle of respect for autonomy in the care of nursing home residents. Nurs Ethics 2001; 8(5): 419–431. 23. Fjelltun A-MS, Henriksen N, Norberg A, et al. Carers’ and nurses’ appraisals of needs of nursing home placement for frail older in Norway. J Clin Nurs 2009; 18(22): 3079–3088. 24. Lillemoen L and Pedersen R. Ethical challenges and how to develop ethics support in primary health care. Nurs Ethics 2013; 20(1): 96–108. 25. Manley K, Watts C and Cunningham G. Principles of Nursing Practice: development and implementation. Nurs Stand 2012; 25(27), http://www.rcn.org.uk/development/practice/principles (accessed 14 March 2014). 26. Lopez RP. Decision-making for acutely ill nursing home residents: nurses in the middle. J Adv Nurs 2009; 65(5): 1001–1009. 27. Be´langer E, Rodrı´guez C and Groleau D. Shared decision-making in palliative care: a systematic mixed studies review using narrative synthesis. Palliat Med 2011; 25(3): 242–261.
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28. Schaffer MA. Ethical problems in end-of-life decisions for elderly Norwegians. Nurs Ethics 2007; 14(2): 242–257. 29. McClement S, Lobchuk M, Chochinov HM, et al. ‘Broken covenant’: healthcare aides’ ‘experience of the ethical’ in caring for dying seniors in a personal care home. J Clin Ethics 2010; 21(3): 201–211. 30. Enes SPD and De Vries K. A survey of ethical issues experienced by nurses caring for terminally ill elderly people. Nurs Ethics 2004; 11(2): 150–164. 31. Dreyer A, Førde R and Nortvedt P. Ethical decision-making in nursing homes: influence of organizational factors. Nurs Ethics 2011; 18(4): 514–525. 32. Hantikainen V and Ka¨ppeli S. Using restraint with nursing home residents: a qualitative study of nursing staff perceptions and decision-making. J Adv Nurs 2000; 32(5): 1196–1205. 33. Slettebø A and Bunch EH. Ethics in nursing homes: experience and casuistry. Int J Nurs Pract 2004; 10(4): 159–165. 34. Weiner CR, Tabak NR and Bergman RR. Use of restraints on dementia patients: an ethical dilemma of a nursing staff in Israel. JONAS Healthc Law Ethics Regul 2003; 5(4): 87–93. 35. Lopez RP, Amella EJ, Mitchell SL, et al. Nurses’ perspectives on feeding decisions for nursing home residents with advanced dementia. J Clin Nurs 2010; 19(5–6): 632–638. 36. Gjerberg E, Førde R and Bjørndal A. Staff and family relationships in end-of-life nursing home care. Nurs Ethics 2011; 18(1): 42–53. 37. Ha¨ggstro¨m E and Kihlgren A. Experiences of caregivers and relatives in public nursing homes. Nurs Ethics 2007; 14(5): 691–701. 38. Teeri S, Leino-Kilpi H and Va¨lima¨ki M. Long-term nursing care of elderly people: identifying ethically problematic experiences among patients, relatives and nurses in Finland. Nurs Ethics 2006; 13(2): 116–129. 39. Egede-Nissen V, Jakobsen R, Sellevold GS, et al. Time ethics for persons with dementia in care homes. Nurs Ethics 2013; 20(1): 51–60. 40. Juthberg C, Eriksson S, Norberg A, et al. Perceptions of conscience, stress of conscience and burnout among nursing staff in residential elder care. J Adv Nurs 2010; 66(8): 1708–1718. 41. Kayser-Jones JS, Beard RL and Sharpp TJ. Case study: dying with a stage IV pressure ulcer (corrected) (published erratum appears in Am J Nurs 2009 March; 109(3): 13, and 2009 April; 109(4): 13). Am J Nurs 2009; 109(1): 40–49. 42. Froggatt K, Hockley J, Parker D, et al. A system lifeworld perspective on dying in long term care settings for older people: contested states in contested places. Health Place 2011; 17(1): 263–268. 43. Van der Dam SS, Abma TA, Kardol MJM, et al. ‘Here’s my dilemma’. Moral case deliberation as a platform for discussing everyday ethics in elderly care. Health Care Anal 2012; 20(3): 250–267. 44. Teeri S, Va¨lima¨ki M, Katajisto J, et al. Nurses perceptions of older patients integrity in long-term institutions. Scand J Caring Sci 2007; 21(4): 490–499. 45. McDaniel C, Roche JK and Veledar E. Ethics environment in long-term care. J Appl Gerontol 2011; 30(1): 67–84. 46. Sellevold GS, Egede-Nissen V, Jakobsen R, et al. Quality care for persons experiencing dementia: the significance of relational ethics. Nurs Ethics 2013; 20(3): 263–272. 47. Van der Dam SS, Abma TAT, Molewijk ACB, et al. Organizing moral case deliberation experiences in two Dutch nursing homes. Nurs Ethics 2011; 18(3): 327–340. ˚ and Bunch EH. Solving ethically difficult care situations in nursing homes. Nurs Ethics 2004; 11(6): 48. Slettebø A 543–552. ˚ , Sandman L, Andersson E, et al. Everyday ethics in the care of elderly people. Nurs Ethics 2006; 13(3): 49. Bolmsjo¨ IA 249–263.
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USA; 147-bed nursing homes
Explorative and descriptive; 14 RNs
Quantitative, descriptive; 135 RNs
Quantitative; 200 nursing staff
Unknown
Semistructured interviews, observation
observation
Questionnaire
Grounded theory
Grounded theory
MEDIUM
MEDIUM
MEDIUM
MEDIUM
MEDIUM
LOW
(continued)
HIGH Gatekeepers used, regional ethics research committee approval MEDIUM Protocol reviewed by ethics committee
Significant testing, Ethics committee Cronbach’s approval alpha Unknown Descriptive Semistatistics, structured content analysis questionnaire
Quantitative; 94 nurses, 31 Vignettes physicians
Unknown
Colaizzia’s pheno- Ethical permission menological collected method from participants Concurrent with IRB approval collection
Unstructured interviews
Unknown
Unknown
Ethical Critical appraisal considerationsa score
Observation
Data collection Data analysis
Ethnography; all residents, Observation, family and staff interviews
Slettebø and Norway; 1 nursing Investigate how nurses apply Qualitative comparative; Bunch 14 RNs home strategies to solve ethical (2004)48 dilemmas
Critical examination of ethical issues in daily living affecting residents with dementia Van Thiel The Netherlands; Gain insight into moral intuitions of caregivers and Van 50 nursing regarding patient Delden homes autonomy (2001)22 Weiner Investigate ethical dilemmas Israel; 3 nursing et al. for staff in realistic and homes, 3 (2003)34 idealistic situations medicine wards Enes and De England; 13 Examine experiences of Vries disclosure, determine elderly person (2004)30 other ethical issues, care units examine issues in respect to palliative care needs Slettebø and Norway; 3 nursing Explore nurses’ methods of Bunch homes solving ethically difficult (2004)33 care situations, present a model
Powers (2001)9
Hantikainen Switzerland; 4 and long-term Ka¨ppeli nursing home (2000)32 units
Case Study; one 89-yearTo discuss spiritual, old Jewish female professional and ethical approaches to working with elderly patients Explore staff perceptions of Phenomenological; 20 trained/untrained restraint and how these nursing staff govern decision-making
USA; skilled nursing facility
Linzer et al. (2000)8
Design and sample
Aims of the study
Country, setting
Author(s)/ (year)
Data extraction tables
Appendix 1
13
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Country, setting
Aims of the study
Design and sample
Finland; 4 longterm care wards
Finland; 4 longterm institutions
Sweden; public nursing home
Norway; nursing homes, homecare organisations, hospices, educational employment Norway; 1 nursing Investigate how caregivers emphasise daily dialogue home with two and mutual reflection to wards reach moral alternatives of action
Teeri et al. (2006)38
Teeri et al. (2007)44
Ha¨ggstro¨m and Kihlgren (2007)37
Schaffer (2007)28
Solum et al. (2008)12
Unknown
LOW
Critical appraisal Ethical considerationsa score
Observation, Hermeneutic interviews phenomenology; 7 staff interviewed
Phenomenological Research interpretive ethics committee approval
Content analysis
(continued)
MEDIUM
MEDIUM University ethics committee approval MEDIUM Qualitative Community Exploratory; 10 patients, Open Explore ethically content analysis health 17 relatives, 9 nurses interviews, problematic situations in centre ethics essays long-term care approval HIGH Ethics Face/content Explore how the integrity of Exploratory; 222 nursing Structured committee staff questionnaire validity, patients over 65 years is approval Cronbach’s maintained in long-term alpha, inferential care and descriptive statistics Unknown LOW Hermeneutic Descriptive; 20 caregivers, Interviews Increase understanding of theoretical 17 relatives (following how caregivers and analysis intervention) relatives experience older persons living in a public nursing home Ethical analysis Panel review MEDIUM SemiExploratory; 25 health Explore ethical problems framework structured professionals, 6 elders experienced by interviews and 5 relatives healthcare professions, elders and families in endof-life decision-making
Unknown
Data collection Data analysis
Case study; 1 resident and Unknown Israel; 1 ward for Explore decision-making Tabak and during ethical conflict his wife the mentally Shemeshfrail Kigli (2006)10 Observation Bolmsjo¨ Sweden; 1 nursing Describe and interpret the Descriptive and exploratory; staff plus home ward ethical milieu and analyse et al. 12 residents the situations (2006)49
Author(s)/ (year)
Appendix 1. (continued)
14
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Country, setting
Norway/Sweden; 10 nursing homes
USA; nursing homes
Johansson et al. (2009)15
VonDras et al. (2009)16
Dreyer et al. Norway; 10 (2010)17 nursing homes
Descriptive; 9 physicians, Study how physicians and 10 nurses nurses protect patient autonomy in end-of-life and how they justify their practice
Interviews
Observation, interviews
Observation, Generate a model of nursing Grounded theory; 10 nurses interviews behaviours/social processes inherent in decision-making for acutely ill residents Qualitative descriptive; 10 Interviews Explore RNs’ and nursing nurses, 18 nursing assistants’ experience of assistants caring for patients with dementia at risk of falling Exploratory; 44 nursing Self-report Explore workplace stress staff survey and ethical challenges in a nursing home
USA; nursing home
USA; 4 nursing homes
Interviews
KayserJones et al. (2009)41 Lopez (2009)26
To elucidate night nurses’ experiences of the meaning of caring
MEDIUM
Institutional approval
Unknown
HIGH
LOW
Regional ethics HIGH board approval
Unknown
(continued)
Phenomenography Gatekeepers, MEDIUM in line with ethical guidelines University MEDIUM Content, approval descriptive, correlation analysis Regional ethics MEDIUM Text analysis, approval constant comparison
Grounded theory
Unknown
Text analysis
Ethical analysis
HIGH
Critical appraisal Ethical considerationsa score
Qualitative Ethics content analysis committee approval
Data collection Data analysis
Ricoeur’s phenomenologicalhermeneutic approach; 7 nurses Examine ethical aspects of a Case study; one patient case study
UK; 2 urban care homes
Design and sample
Explore carers’ and nurses’ Exploratory; 11 carers and Interviews 11 nurses appraisals concerning nursing home placement and illuminate ethical issues in decision-making Survey; 65 nursing home Vignettes Test whether different staff values are apparent due to the trickle-down effect
Aims of the study
Sweden; medium municipality
Dunworth and Kirwan (2009)13 Gustafsson et al. (2009)14
Fjelltun et al. Norway; small municipality (2009)23
Author(s)/ (year)
Appendix 1. (continued)
15
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USA; 2 nursing homes
Lopez et al. (2010)35
Aims of the study
Understand nursing beliefs, knowledge and roles in feeding decisions for dementia patients McClement Canada; care Access lived experiences of et al. homes HCAs as they encounter (2010)29 ethically difficult end-oflife situations Juthberg Sweden; Describe and compare et al. municipality patterns of perceptions of (2010)40 conscience, stress of conscience and burnout in relation to occupational belonging Gjerberg Norway; 469 Gain a comprehensive et al. nursing homes understanding of how (2010)18 nursing homes practice end-of-life care Jakobsen Norway; 1 nursing Illuminate ethically difficult and Sørlie home situations experienced by (2010)19 care-providers Van der Netherlands; 2 Evaluate one way of Dam et al. nursing homes implementing MCD (2011)47 Gjerberg Norway; 364 Examine involvement of et al. nursing homes residents and relatives in (2011)36 end-of-life decisions and explore challenges Dreyer et al. Norway; 10 To explore how doctors and (2011)31 nursing homes nurses describe professional collaboration around dying patients McDaniel Examine the ethics USA; one longet al. environment among term care (2011)45 employees and patients, facility and explore the link to staffing outcomes
Country, setting
Author(s)/ (year)
Appendix 1. (continued)
Descriptive and inferential statistics
Survey; 51 employees, 68 residents
Questionnaire
Text analysis
Exploratory; 9 doctors, 10 Interviews nurses
Descriptive, inferential statistics
MEDIUM
IRB approval
(continued)
MEDIUM
MEDIUM
MEDIUM
HIGH
Ethics committee approval
Not needed
Observation
Naturalistic; all staff in each nursing home (225) Survey; 664 staff
Questionnaire
Phenomenological- Ethics committee hermeneutic approval interpretation Iterative process Cases anonymised
MEDIUM
Not needed
Interviews
MEDIUM
HIGH
Ethics committee approval
Phenomenology; 23 staff members
Cross-sectional Inferential study statistics
Descriptive; 50 RNs, 96 nursing assistants
Inferential/ descriptive statistics
Interviews
Phenomenology; 12 healthcare aides
Survey; 664 nursing home Questionnaire staff
Interviews
HIGH
Critical appraisal Ethical considerationsa score
University Iterative approval description, analysis and interpretation Van Manen’s line Institutional by line approach approval
Data collection Data analysis
Descriptive; 5 RNs, 6 LPNs
Design and sample
16
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Country, setting
Interviews
Questionnaire, 2 focus groups
Exploratory; 12 healthcare Interviews Explore characteristics of providers good care experienced by healthcare providers
MCD sessions
Questionnaire survey instrument
Norwegian Social Sciences Data Services approval
HIGH
MEDIUM Informed verbal/ written consent Regional ethics HIGH committee approval
Phenomenological- Board approval MEDIUM hermeneutic analysis
Ricoeur’s phenomenologicalhermeneutic interpretation Descriptive/ inferential statistics
Conventional qualitative analysis
HIGH
Critical appraisal Ethical considerationsa score
Analysed by ethical Unknown theory in MS excel
Data collection Data analysis
IRB: institutional review board; RNs: registered nurses; LPNs: licensed practical nurses; HCAs: healthcare-assistants; MCD: moral case deliberation. a All articles collected informed consent unless ‘unknown’ was stated.
Sellevold et al. (2013)46
Design and sample
Survey; 65 full time staff Explore values of staff in homes which have differently qualified managers Descriptive; 60 MCD Present an overview of group participants issues from participants of an MCD project
Aims of the study
Survey; 323 employees Explore how frequent/ prominent ethical challenges are in primary healthcare and how important primary healthcare workers think it is to deal better with these challenges/what kind of ethics support they want PhenomenologicalNorway; 2 nursing Describe care-providers’ hermeneutic approach; homes experiences with ethical 12 care-providers challenges in relationships with patients with dementia
UK; 2 care homes Dunworth and Kirwan (2012)20 Van der Netherlands; 2 Dam et al. nursing homes, (2012)43 a consortium of care homes EgedeNorway; 2 nursing Nissen homes et al. (2012)39 Lillemoen Norway; 1 and municipality Pedersen (2013)24
Author(s)/ (year)
Appendix 1. (continued)
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Appendix 2 Frequency of issues raised Issue
Frequency
Ethical principles/professional ethics Ethical principles (generally) – conflict from complying with institutional policy, other principles Respect for autonomy Beneficence/non-maleficence Justice Duty of care/fulfilling professional responsibilities Confidentiality Communication and decision-making Communication with the team/colleagues Communication with the resident Communication with the family Decision-making and advanced directives Restraint Lack of resources Lack of knowledge Lack of finances Lack of time Lack of resources Access to doctors Attending to individual needs/needs not being met Quality of care provision Preserving integrity and dignity/respect Quality of person-centred care Ethics environment Ageism: the silent contributor Social issues (taboo of death, ageism) Solutions Negotiate, explain or restrain, or use previous experiences Moral case deliberation Openness in the working culture Time ethics
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18 17 7 2 7 3 5 6 8 10 8 6 3 7 4 4 7 9 7 1 3 1 2 1 1
