REVIEW

Dignity-conserving care in palliative care settings: An integrative review Bridget Johnston, Philip Larkin, Michael Connolly, Catriona Barry, Melanie Narayanasamy, € Ulrika Ostlund and Sonja McIlfatrick

Aims and objectives. To report an integrative review of evidence relating to dignity-conserving care in palliative care settings. It will also suggest avenues for future research. Background. Research suggests that dignity is welcomed by those receiving palliative and end of life care. However, as dignity is a subjective term, it is not always explicit how this may be employed by nurses. Given that the preferred place of care for patients with palliative care needs is the home, the issue of dignity may be particularly important for community nurses. Therefore, synthesising evidence of dignity-conserving care for community nurses caring for people with palliative care needs provides clarity in a complex area of palliative care research. Design. Integrative literature review. Method. The review involved key bibliographic and review databases CINAHL, MEDLINE, EMBASE, ASSIA and PsycInfo. Medical Subject Headings and free terms were undertaken for articles published from January 2009–September 2014 and retrieved papers were assessed against inclusion criteria. Final included articles were reviewed for reported dignity-conserving care actions, which were classified under nine themes of the Dignity Model. Results. Thirty-one articles were included. Nine Dignity Model themes were used to classify care actions: Level of Independence; Symptom Distress; Dignity-Conserving Perspectives; Dignity-Conserving Practices; Privacy Boundaries; Social Support; Care Tenor; Burden to Others; and Aftermath Concerns. Reported care actions included listening, conveying empathy, communication and involving patients in care. Authors: Bridget Johnston, BN, PhD, RGN, PGCE, Professor of Palliative and Supportive Care, Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, School of Health Sciences, The University of Nottingham, Queen’s Medical Centre, Nottingham, UK; Philip Larkin, BSc, MSc, PhD, RN, RCN, RHV, RNT, Professor of Clinical Nursing (Palliative Care), School of Nursing, Midwifery and Health Systems, University College Dublin and Our Lady’s Hospice and Care Services, Dublin 4 Ireland; Michael Connolly, BA, MSc, PhD, RGN, RNT, Lecturer, Head of Education, School Of Nursing, Midwifery & Health Systems, Health Sciences Centre, University College Dublin, Dublin 4, Ireland and All Ireland Institute of Hospice & Palliative Care (AIIHPC), Education and Research Centre, Our Lady’s Hospice and Care Services, Harold’s Cross, Dublin; Catriona Barry, RGN, RM, RNT, Project Manager, Dignity Care Intervention Ireland, All Ireland Institute of Hospice and Palliative Care, Education and Research Centre, Our Lady’s Hospice and Care Services, Harold’s

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772, doi: 10.1111/jocn.12791

What does this paper contribute to the wider clinical community?

• Provides



evidence-based care actions that promote dignity-conserving care in palliative care practice. Some care actions are relevant beyond palliative care, since promotion and maintenance of dignity are important for all aspects of health care.

Cross, Dublin; Melanie Narayanasamy, BA, MA, PhD, Research Fellow, Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, School of Health Sciences, Queen’s Medical Centre, The University of Nottingham, Nottingham, UK; € Ulrika Ostlund, PhD, OCN, RN, Senior Lecturer, Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm and Department of Health and Caring Sciences, Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden; Sonja McIlfatrick, BSc, MSc, PhD, RGN, Professor, Head of Research, University of Ulster/All Ireland Institute of Hospice & Palliative Care (AIIHPC), Newtownabbey, UK Correspondence: Bridget Johnston, Professor of Palliative and Supportive Care, Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, School of Health Sciences, Queen’s Medical Centre, The University of Nottingham, Nottingham NG7 2HA, UK. Telephone: +44 (0) 115 8230817. E-mail: [email protected]

1743

B Johnston et al.

Conclusion. Care actions could be classified under most of Dignity Model themes. However, there were less reported care actions related to Level of Independence and Aftermath Concerns, which meant that these had to be formulated independently. Future research should be structured around these areas to determine appropriate care actions for nurses to give dignity-conserving care that addresses these specific themes. Relevance to clinical practice. Synthesising the available evidence of dignity-conserving care identifies evidence-based care actions and provides guidance to nurses in clinical practice caring for patients with palliative care needs. Future opportunities for research are identified to guide promotion of dignity in palliative care.

Key words: care actions, community, dignity, dignity-conserving care, end of life, integrative review, palliative care Accepted for publication: 6 January 2015

Introduction Dignity-conserving care should be incorporated into the work of all healthcare professionals, but remains an abstract concept, specific to the individual and the context in which it is defined (Jacelon et al. 2004). The World Health Organisation (WHO)’s (2011) approach to palliative care suggests that dignified, sensitive and patient-centred care should be promoted as part of responding to nonmedical needs of patients and their families. Delivering dignified care is identified as a responsibility for all healthcare professionals (Gallagher et al. 2008), and should be provided across a range of healthcare settings (WHO 2011). However, it may be particularly pertinent for nurses since they are likely to be the main contact for people receiving palliative care (Imperial College Healthcare NHS Trust 2014). Dignity has been included as a key theme in the Irish government’s approach to palliative care (Irish Hospice Foundation 2008, HSE 2013), when emphasising that services should promote person-centred, holistic care. However, May et al. (2014) argues that the economic evidence base is lacking in the Irish context and more research is needed to establish effective outcomes, which can be used in palliative care services. The focus of this paper is to appraise literature that reported care actions that have been identified as dignityconserving. The paper contributes to a wider project, building on existing published work (Johnston et al. 2012) designed to enhance dignity for community-based patients with palliative care needs in the Irish context.

1744

Chochinov et al. (2006) argues that individuals differ considerably in terms of what affects their sense of dignity. Although the literature suggests that individuals want to be treated with dignity and to die with dignity (Jacelon et al. 2004), few empirical studies have provided guidance or direction on how this might be operationalised or systematically achieved (Chochinov et al. 2006). The Dignity Care Intervention (DCI) (formerly termed Dignity Care Pathway, renamed by research team and advisory group at start of Irish project), (Johnston et al. 2010, 2012, 2014) is one intervention that provides guidance for community nurses to identify and provide appropriate care, regarding key physical, emotional, spiritual or social concerns, which are causing distress to individuals with palliative care needs, as well as their families. This intervention was empirically developed from a systematic review of the literature and focus groups with community nurses, patients, carers and General Practitioners, to help dignityconserving care to be employed in the community care set€ ting (Brown et al. 2011, Johnston et al. 2012, 2014, Ostlund et al. 2012, Andrew et al. 2013). Development of the DCI was based on Chochinov’s theoretical model of dignity (Chochinov et al. 2002). This model is empirically driven and based on perceptions of dignity from cancer patients in a Canadian and Australian palliative care context (Chochinov 2002, Chochinov et al. 2002). The model has been validated (Chochinov et al. 2006), is supported by factor analysis (Hack et al. 2004) and is thought to be flexible enough for application to any patient group with life-threatening conditions (Chochinov

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

B Johnston et al. Table 1 Inclusion criteria Criteria

Rationale

Literature published since 2009

€ This integrative review updates previous narrative review (Ostlund et al. 2012), which looked at articles written between 1999–April 2009 This theme was the key focus of the review This group of people, within palliative care settings, was the focus of the review

Specific focus on dignity-conserving care Specific focus on care for individuals with palliative care needs, individuals with life-limiting conditions, including the frail older population Specific focus on dignity and dignity-conserving care as a nursing intervention Describe the results of empirical and theoretical research studies

English language only Adults only Human subjects only An exclusively Western focus Not about dementia and/or mental illness

Not about euthanasia and physician assisted suicide Not predominantly anecdotal, reflective or impressionistic Not a “letter to the editor” piece

The intention of the review is to focus on specific nursing practices/interventions/tools/ perspectives that apply to nurses and help them employ dignity-conserving care Empirical studies were deemed the best source of evidence to fulfil the aim of this review. The majority of included papers are therefore studies of this kind. Theoretical perspectives, as provided by systematic reviews, were also included if evidence was deemed relevant. Selected case studies have also been included if relevant Budgetary constraints meant that only English texts were reviewed This review is part of developing nursing intervention(s) for adults with palliative care needs. Children’s palliative care needs may be different This review is part of developing nursing intervention(s) for humans with palliative care needs; non-human subjects may require other interventions The scope of this integrative review was only able to cover interventions developed to be applied in Western Palliative Care settings It was determined that people with dementia and/or mental illness will require specific approaches for care; this review is part of developing a nursing intervention for people at end of life, with physical illness or frailty This review is mindful that the principles of palliative care do not hasten death Empirical studies, systematic reviews and selected case studies were deemed most appropriate for providing evidence of dignity-conserving care in practice Empirical studies, systematic reviews and selected case studies were deemed most appropriate for providing evidence of dignity-conserving care in practice. One letter to the editor was included because it was found to encompass good guidance for nurses, according to the reviewers

dignity-conserving care actions. As government agendas continually identify dignity as a key element pertinent to healthcare practice within palliative care settings (DH 2008, 2013, 2014; Health Services in Ireland (HSE) 2013), synthesising the evidence is appropriate to contribute to the knowledge base in this complex area. It also allows future, potential research opportunities to emerge, increasing the sparse evidence-base.

such as ‘Human Dignity’, ‘Humanism’, ‘Personhood’, ‘Self Concept’, ‘Palliative Care’, ‘Terminally Ill’ and ‘Advanced cancer’. Free terms around dignity, self-worth, self-concept, distress, end of life were also used for the search strategy. The quality of the retrieved papers was assessed against inclusion criteria that are displayed in Table 1, which also states related rationale.

Search outcomes

Methods Search of the literature A comprehensive search strategy and strict eligibility criteria were applied to identify relevant peer reviewed journal articles. The key bibliographic and review databases were searched, which were MEDLINE, CINAHL, EMBASE, ASSIA and PsycInfo. The search strategy used MeSH headings

1746

After a literature search of the main databases, 646 articles were identified. These titles and abstracts were screened against the inclusion criteria and this allowed significant exclusion of articles that did not meet the criteria. This narrowed the list down to 116 articles to be reviewed based on full manuscripts. During full manuscript review, a further 85 articles were excluded, largely based on their inability to provide sufficient guidance for nurses in employing © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

B Johnston et al. Table 1 Inclusion criteria Criteria

Rationale

Literature published since 2009

€ This integrative review updates previous narrative review (Ostlund et al. 2012), which looked at articles written between 1999–April 2009 This theme was the key focus of the review This group of people, within palliative care settings, was the focus of the review

Specific focus on dignity-conserving care Specific focus on care for individuals with palliative care needs, individuals with life-limiting conditions, including the frail older population Specific focus on dignity and dignity-conserving care as a nursing intervention Describe the results of empirical and theoretical research studies

English language only Adults only Human subjects only An exclusively Western focus Not about dementia and/or mental illness

Not about euthanasia and physician assisted suicide Not predominantly anecdotal, reflective or impressionistic Not a “letter to the editor” piece

The intention of the review is to focus on specific nursing practices/interventions/tools/ perspectives that apply to nurses and help them employ dignity-conserving care Empirical studies were deemed the best source of evidence to fulfil the aim of this review. The majority of included papers are therefore studies of this kind. Theoretical perspectives, as provided by systematic reviews, were also included if evidence was deemed relevant. Selected case studies have also been included if relevant Budgetary constraints meant that only English texts were reviewed This review is part of developing nursing intervention(s) for adults with palliative care needs. Children’s palliative care needs may be different This review is part of developing nursing intervention(s) for humans with palliative care needs; non-human subjects may require other interventions The scope of this integrative review was only able to cover interventions developed to be applied in Western Palliative Care settings It was determined that people with dementia and/or mental illness will require specific approaches for care; this review is part of developing a nursing intervention for people at end of life, with physical illness or frailty This review is mindful that the principles of palliative care do not hasten death Empirical studies, systematic reviews and selected case studies were deemed most appropriate for providing evidence of dignity-conserving care in practice Empirical studies, systematic reviews and selected case studies were deemed most appropriate for providing evidence of dignity-conserving care in practice. One letter to the editor was included because it was found to encompass good guidance for nurses, according to the reviewers

dignity-conserving care actions. As government agendas continually identify dignity as a key element pertinent to healthcare practice within palliative care settings (DH 2008, 2013, 2014; Health Services in Ireland (HSE) 2013), synthesising the evidence is appropriate to contribute to the knowledge base in this complex area. It also allows future, potential research opportunities to emerge, increasing the sparse evidence-base.

such as ‘Human Dignity’, ‘Humanism’, ‘Personhood’, ‘Self Concept’, ‘Palliative Care’, ‘Terminally Ill’ and ‘Advanced cancer’. Free terms around dignity, self-worth, self-concept, distress, end of life were also used for the search strategy. The quality of the retrieved papers was assessed against inclusion criteria that are displayed in Table 1, which also states related rationale.

Search outcomes

Methods Search of the literature A comprehensive search strategy and strict eligibility criteria were applied to identify relevant peer reviewed journal articles. The key bibliographic and review databases were searched, which were MEDLINE, CINAHL, EMBASE, ASSIA and PsycInfo. The search strategy used MeSH headings

1746

After a literature search of the main databases, 646 articles were identified. These titles and abstracts were screened against the inclusion criteria and this allowed significant exclusion of articles that did not meet the criteria. This narrowed the list down to 116 articles to be reviewed based on full manuscripts. During full manuscript review, a further 85 articles were excluded, largely based on their inability to provide sufficient guidance for nurses in employing © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Review

Dignity in care literature review

dignity-conserving care. The PRISMA diagram in Fig. 2 gives an outline of the narrowing down process.

Data analysis and appraisal Literature was reviewed against the inclusion criteria in Table 1. Included articles were then reviewed in terms of evidence of dignity-conserving practices, interventions, tools and/or perspectives that were developed/used/discussed. Articles were specifically appraised based on their strength of providing guidance for care actions that nurses could use to employ dignity-conserving care in practice. These care actions were then linked to the appropriate theme under the Dignity Model. For full text manuscript review, 116 articles were reviewed by two authors (MN and BJ). Please see Table 2 for a full appraisal of final included articles. Table 3 conveys Chochinov et al. (2002) Dignity Model with key categories, themes and subthemes described. Whittemore and Knafl (2005) advise that the

data analysis stage should involve identifying patterns and themes, clustering, making contrasts and comparisons, recognising emerging patterns, noting relations between variability and developing a logical trial of evidence. The approach to this integrative review took these factors into account by identifying emerging dignity-conserving care actions and categorising these under the relevant leading themes and subthemes as specified within the Dignity Model. As analysis proceeded, relevant sections of articles were labelled with appropriate themes and subthemes from this model. This allowed a means of managing the data and helped to narrow down the data further, which used techniques of extracting and coding data from primary sources to simplify, abstract, focus and organise data into a manageable framework (Whittemore & Knafl 2005, p. 550). According to Torraco (2005), integrative reviews synthesise new knowledge around topics by: Outlining a future research agenda; Classifying conceptual constructs; Developing alternative models; and finally Metatheory. In this

Literature search Databases: MEDLINE, CINAHL, EMBASE, ASSIA and PsycInfo.

Search results combined (n = 646)

Arcles screened based on tle and abstract Excluded (n = 530)

Included (n = 116)

Exclusion based on failure to adequately meet inclusion criteria or duplicaons

Manuscript review and applicaon of inclusion criteria Excluded (n = 85)

Included (n = 31)

Exclusion based on arcle not focusing on nursing intervenons/guidance and/or other aspects of inclusion criteria

Figure 2 PRISMA flow diagram.

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

1747

1748

Alidina and Tettero (2010)

References

Dufault and Martocchio’s Multidimensional Model of Hope (MMH)- focuses on the six dimensions involved in the process of hoping, including the affective, cognitive, affiliative, behavioural, contextual and temporal. Has 2 spheres‘particularized’ hope and ‘generalized’ hope

Dignity-conserving care practice/intervention(s)/ tool(s)/perspective(s)

Table 2 Included articles

This model is relevant to nursing practice because nurses are the primary caregivers for terminallyill patients and are in a strategic position to enhance or diminish their levels of hope. (p356)

Rationale Part of article provides a case report on ‘Mr A’

Participants and setting Literature review; Case report

Methods Symptom Distress DignityConserving Perspectives DignityConserving Practices Social Support

Relevant Dignity Model theme

Strengths: Hope is associated with dignity in dying patients and is viewed as an important coping strategy, which enables an individual to adapt to a difficult situation (p354). Thus, models relating to hope may be beneficial in such care environments Model is relevant to nursing practice because nurses are the primary caregivers for terminally ill patients Understanding the elements of hope can help nurses to be sources of hope for patients in their final days MMH model has been developed from empirical findings from a study looking at the meaning of ‘hope’ in patients with cancer and patients who were terminally ill. Therefore, findings from this patient group are likely to be apt for nurses working in palliative care Indicates clearly how nurses can initiate and/or maintain hope in their patients Also provides clear guidance about the dimensions of hope (affective, cognitive, behavioural, affiliative, temporal and contextual) and how nurses should be directed when considering these >E.g. Cognitive dimension allows nurses to clarify the perception of hope with their patients and allows opportunity to correct misinformation may might have about disease or prognosis Suggests using Herth Hope Index (HHI) (Herth, 1992) as an outcome measure of hope (to be possibly used to measure interventions which use with MMH model) Limitations: No clear discussion of empirical use of MMH as such Phenomenon of hope is generally under-researched and therefore nurses might require more empirical evidence before being confident in practice.

Findings summary

B Johnston et al.

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Two models – Personal alarm or additional care aide hours for people with terminal illness, living at home.

Strategies to ensure that patient choices about dignity and place of death are respected at end of life

Testing of three-factor model (Geriatric Cancer Experience in End of Life) in end of life research for geriatric patients (Adapted from Emanuel & Emanuel’s (1998) ‘Propositions About a Good Death’

Aoun et al. (2012)

Bracegirdle (2010)

Buck (2008)

References

Dignity-conserving care practice/intervention(s)/ tool(s)/perspective(s)

Table 2 (continued)

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772 While validated models are recommended as essential to guide the conceptualization of phenomena, the selection of the variables to be studied and the hypotheses to be tested, none were found that adequately explicate the geriatric cancer experience in end of life. (p6)

Alleviating distress when patients no longer feel connected with the world and are angry that their body has failed them can be challenging for healthcare professionals. (p22)

Due to the ageing of the population and the growing number of people with palliative care needs who live alone, it has become increasingly important to provide appropriate homebased care for this group of people. (p599)

Rationale

None specific article examines challenges for nurses in respecting patient choices and how services should adapt 403 newly admitted hospice patients

26 palliative care patients of Silver Chain Hospice Care, Western Australia

Participants and setting

Symptom Distress Care Tenor

Symptom Distress DignityConserving Practices

Nonexperimental, cross-sectional research design Secondary data analysis from data collected for a larger funded study exploring systematic assessment and hospice patient outcomes

Burden to Others Care Tenor Social Support Privacy Boundaries Level of Independence

Literature review

RCT- 26 participants randomly assigned to either having a personal alarm or additional care aide hours in their home

Methods

Relevant Dignity Model theme

Strengths: Implications for nursing awarded good discussion and highlights the model’s ability to help understanding into the links between symptoms, spirituality and quality of life Limitations: Model applies to older cancer patients in end of life – unclear as to whether this will guide care for other patient populations.

Strengths: Provides details of what the two interventions involved/ how they were employed Two models have been piloted and evaluated Results largely reveal positive outcomes on many dignity factors which are discussed in the article Insight into how dignity can be conserved when person’s home is the palliative care setting (As opposed to hospital and hospices, which tend to be reported more widely) Indicates which aspects of dignity are catered for by each intervention. E.g. Care aide support was seen to help with psychosocial issues, whereas the personal alarm was better geared to support physical issues Limitations: Less guidance on who would provide care aide support. Authors suggest that care aides require resources, but suggest that the role could be fulfilled by volunteers if they receive training No guidance on how to match care aides effectively to patients – this study is an RCT and so allocation was not based on need RCT design may not have been an appropriate methodology to study this population Strengths: Clear and relevant guidance for nurses is how they can conserve patients’ dignity Limitations: Not an empirical study or systematic review – literature review

Findings summary

Review Dignity in care literature review

1749

1750

Detering et al. (2010)

References

Advance care planning

Dignity-conserving care practice/intervention(s)/ tool(s)/perspective(s)

Table 2 (continued)

. . .there has been an increasing awareness of the inadequacy of end of life care and of the poor knowledge of patients’ wishes about their medical treatment at a time when they lose capacity to make decisions, resulting in patients being cared for in a way they would not have chosen (p1)

Rationale 309 legally competent medical inpatients aged 80 and over, followed for six months or until death Single centre *university hospital) study, Melbourne, Australia

Participants and setting Prospective randomised controlled trial Participants randomly allocated to usual care (n = 155) or usual care plus facilitated advance care planning (n = 154). Of the 154 in the intervention group, 125 patients received advance care planning Primary outcome measure was whether a patient’s end of life wishes were known and respected

Methods Care Tenor Level of independence Social Support Psychological distress

Relevant Dignity Model theme

Strengths: Differences between Intervention and Control groups clearly presented with regards to people’s responses when they were discharge. Provides useful examples that show how advance care planning discussions promote dignity in patients Statistical significance found in relation to differences in levels of satisfaction between the two groups (p < 0001) Actual intervention is explained well and a link to the model upon which it is based is provided in the main article body Intervention was facilitated by nonmedical staff e.g. nurses and allied health professionals. Thus, this study provides relevant guidance Study ensured that treating doctors were involved in discussions on the patients’ medical condition – thus this provides guidance on how other healthcare professionals can be included in the advance care planning process and what role they play. This takes into account the real clinical environment Based on results, this intervention was deemed to be logistically possible and successful in a patient population likely to be encountered by nurses in end of life settings, and in developed nations Limitations: Non-English speaking patients and noncompetent patients were not included in the study. Authors predict that they would benefit greatly from this intervention, but no evidence provided Study did not include people under the age of 80, but authors point out that advance care planning is used successfully in the hospital on younger patients Single centre study might be influenced by local cultural and systematic factors (this is recognised by the authors)

Findings summary

B Johnston et al.

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Dwyer et al. (2009)

References

Eliciting nurses’ perspectives on providing

Dignity-conserving care practice/intervention(s)/ tool(s)/perspective(s)

Table 2 (continued)

Few studies illuminate how staff who are working with older people describe dignity in relation to themselves and the older people (p187)

Rationale 21 participants from four units at one private and two municipal nursing homes four managers; five registered nurses; 12 nursing assistants in a Swedish city

Participants and setting Semi-structured interviews with 21 participants which asked them to describe their everyday work, how they experienced the older person’s dignity and how dignity could be promoted or hindered in the workplace Transcribed interviews were analysed through content analysis

Methods Level of Independence Symptom Distress DignityConserving Perspectives DignityConserving Practices Privacy Boundaries

Relevant Dignity Model theme

Strengths: The sample is staff who are working with older people Specifically focused on perceptions of dignity Provides insight into strategies in place to help deal with issues that may threaten patients’ dignity e.g. guidelines in folders that instruct nurses on what to do in situations General approaches discussed that address varied facets of dignity-conserving care Also provides insight into how dignity of people living in the nursing home may be jeopardised, including with regards to the organisation design (which may lead to older people being treated as a homogenous group) Also has a significant amount on staff members’ perceptions of their own dignity. Enhancing one’s own dignity was ultimately seen a necessary to do a good job Limitations: Swedish context may not be completely applicable to UK nursing home staff? Threats to dignity are identified but there are no strategies discussed as to how these can be rectified or managed Majority of respondents and results were based on perceptions of nursing assistants, rather than registered nurses and managers

Findings summary

Review Dignity in care literature review

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

1751

1752

Edwards et al. (2010)

References

Understandings of spirituality and role of spiritual care in end of life and palliative care

Dignity-conserving care practice/intervention(s)/ tool(s)/perspective(s)

Table 2 (continued)

Spirituality and spiritual care are gaining increasing attention but their potential contribution to palliative care remains unclear. (p753)

Rationale 11 patient articles and eight with healthcare providers were included, incorporating 178 patients with cancer and 116 healthcare providers

Participants and setting Systematic review

Methods DignityConserving Perspectives Care Tenor

Relevant Dignity Model theme

Limitations: Generalisation limited based on focus on one patient population ‘Findings’ are subjective to some extent based on researchers’ personal filters and views Further research needed to ascertain whether findings also apply to patients with other serious conditions and in other settings such as acute and long-term residential home care

Strengths: Unpicks the concept of ‘spirituality’ including its relation to and distinction from ‘religion’ Identifies ways it can emerge in care-giving e.g. ‘spirit to spirit’ framework Barriers to spiritual care are identified, e.g. lack of training in listening skills and uncertainty in how to carry out spiritual assessment Guidance on what constitutes good ‘spiritual care’, with recognition that nurses are the healthcare providers most likely to provide such care Implications for practice are highlighted e.g. what patients want from nurses

Findings summary

B Johnston et al.

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Hack (2012)

References

Commentary on new directions in psychosocial interventions in palliative care

Dignity-conserving care practice/intervention(s)/ tool(s)/perspective(s)

Table 2 (continued)

Great strides have been made in the past decade in the assessment and treatment of pain and fatigue, but the systematic examination of emotional and social wellbeing is more recent. . .guidelines need to be adapted to the palliative care population, broadly disseminated and promoted. (p681)

Rationale None

Participants and setting Editorial

Methods Symptom Distress Care Tenor

Relevant Dignity Model theme

Strengths: Identifies briefly which subset of patients may be at risk of psychosocial distress when referred or accessing palliative care services Makes suggestions to have a ‘palliative care patient navigator’ who will advocate for patients and aid them in accessing palliative care services Recognises that caregivers of psychosocial care include nurses and that services need to implement empirically based psychosocial interventions – this reveals a possible evidence-based research agenda that can help improve services Explores briefly and key findings from research Provides guidance on how best to employ Dignity Therapy effectively e.g. ensure it is culturally sensitive and nuanced Gives further guidelines for effectively carrying out RCTs when evaluating interventions Also identifies important factors to consider when testing interventions e.g. choosing appropriate patient outcome measures and assessing cost-effectiveness Limitations Guidance is limited and not comprehensively explored due to this being an editorial Guidance provided is more about establishing a research agenda as opposed to direct clinical application of interventions

Findings summary

Review Dignity in care literature review

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

1753

1754

Dignity-conserving care practice/intervention(s)/ tool(s)/perspective(s)

The transcripts from Dignity Therapy

References

Hack et al. (2010)

Table 2 (continued)

Following the empirical success of the dignity therapy intervention, the authors wondered about the content of the interview transcripts: What matters most to dying patients. (p716)

Rationale 50 (17 from Canada; 33 from Australia), from patients who had undergone Dignity Therapy. Patients were from palliative inpatient care programmes at tertiary cancer centres and community hospitals

Participants and setting Grounded Theory

Methods DignityConserving Perspectives DignityConserving Practices

Relevant Dignity Model theme

Strengths: Highly relevant – aftermath of Dignity Therapy – picks out emergent themes to identify if life lessons can be learned and insight can be gained into dignity-relevant issues Makes a clear point that transcript analysis revealed that patients’ reflections are linked with their core values. This implies encouragement for healthcare professionals to read transcripts that result from Dignity Therapy (subject to patient’s permission) to acquire a sense of patients’ core values Identifies study participants core values and elaborates on these – likely to be relevant for nurses working with similar patient groups in palliative care settings Gives directions on how Dignity Therapy should be delivered – e.g. i.e. clinicians who are sensitive and skilled, using a core set of questions Outlines what the goals of Dignity Therapy should be Limitations: Further research is needed to ascertain how Dignity Therapy is best employed and how transcripts should be dealt with – this will lead to more comprehensive guidance. E.g. authors ask what benefits might there be by prompting patients during therapy

Findings summary

B Johnston et al.

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Hanratty et al. (2012)

References

Looking at approaches to dealing with patients who have transitions between care

Dignity-conserving care practice/intervention(s)/ tool(s)/perspective(s)

Table 2 (continued)

Extensive research has been conducted into older people’s experiences of transitions in the U.S. The relative neglect of this issue in the U.K. may reflect an assumption that a universal health system will overcome most problems posed by transitions between different settings. (p75)

Rationale Older adults aged between 69– 93 years 30 people were interviewed who had: lung cancer (n = 13); heart failure (n = 14); stroke (n = 3)

Participants and setting In-depth qualitative interviews and thematic analysis

Methods Privacy Boundaries Care Tenor

Relevant Dignity Model theme

Strengths: Issues that threaten patients’ dignity during transitions between care settings are highlighted and explained Strategies to minimise distress during transition are offered. These are also highlighted by identifying positive examples from the interview data, e.g. sensitive discussion of prognosis Interviewees were aged people who had life-limiting conditions and therefore findings are relevant for palliative care nurses Findings are in line with previous research on healthcare and end of life. This possible strengthens validity of findings and gives more weight to the guidance provided Overall, the emerging themes appeared to be common to all conditions and did not seem to be influenced heavily by socio-economic status Authors acknowledge the pressure on government and services to reduce expenditure and so changes proposed do not require extensive resources. Authors suggest improvement can be achieved by employing respect and better communication Limitations: Has a short paragraph under sub-heading of ‘Dignity’, which gives the impression that all dignity-related issues are under this. However, in fact, issues pertinent to dignity are provided is sections preceding this also Disproportionate number of interviewees who had lung cancer were from lowest socio-economic groups – this might account for difficulties they recalled Differences in patterns of transitions between care settings by diagnosis. This issue may have influenced some of the variation in transition experiences, thus, looking at people with the same diagnosis might have strengthened the study All participants were aged, but palliative care patient groups can include younger people; there may be other issues pertinent to younger patients, which this study could not uncover

Findings summary

Review Dignity in care literature review

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

1755

1756

Hov et al. (2012)

References

Ascertaining nurses’ conceptions of good nursing care and provide guidance on how good care can be employed in nursing homes for patients at end of life

Dignity-conserving care practice/intervention(s)/ tool(s)/perspective(s)

Table 2 (continued)

Nursing research about seriously ill patients on ‘the edge of life’ and their situation and needs in nursing homes is still scarce. (p51)

Rationale 14 nurses from two nursing homes, Norway

Participants and setting Participants interviewed twice with data subjected to phenomenographic analysis

Methods Care Tenor Symptom Distress Aftermath Concerns Social Support

Relevant Dignity Model theme

Strengths: ‘Preserving the patient’s dignity’ identified as a key theme and the meaning of this is explored: ‘meeting each patient as a whole and unique person, and giving appropriate treatment and nursing care’ (p53) As well as basic definition, authors also provide practical examples of how this was achieved by the nurses Makes the link between good nursing care and more positive Dignity-Conserving Perspectives. Implies that this relates to how well patients are informed and supported and how well their wishes are interpreted and followed Offers a strategy for ascertaining patients’ wishes e.g. having this written down Highlights where threats to dignity could occur, e.g. situations where patients’ wishes are not followed Good examples provided of how key aspects of good care can be achieved, including with patients who are unconscious and cognitively impaired, based on nurses’ experiences. Not explicitly stated as ‘dignity-conserving’, but these actions fit under Dignity Model themes Nurses were interviewed twice, which meant that points could be elaborated upon and misunderstandings cleared up Findings have been similar in patient-centred studies Limitations: Contextual differences- article comments that compared to other European countries, Norway has a high percentage of population dying in nursing homes. In UK, a lot of people at end of life die in acute hospital settings For the themes ‘Obstacles overshadowed opportunities to carrying out good nursing care’, these problematic situations are clearly discussed, but in most cases, no strategies to remedy them are offered Exclusively nurses’ perspectives- valuable findings may have been gained from interviewing patients and this could have informed practice ~(although findings were found to be similar when compared to patient-centred studies)

Findings summary

B Johnston et al.

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Exploring how the notion of spirituality is relevant to nursing profession

Assessing early stages of a training programme designed to assist Tier 2 staff (e.g. nurses) to screen psychological distress

Hussey (2009)

Jenkins et al. (2010)

References

Dignity-conserving care practice/intervention(s)/ tool(s)/perspective(s)

Table 2 (continued)

None

Over three years, 255 sets of data were collected from staff who attended the course

. . .nurses need to be able to offer spiritual care when appropriate and, to aid them in this, nurse theorists have discussed the nature of spirituality. (p71)

. . .although communication skills training is essential for staff working in cancer services, it does not necessarily improve the detection of specific psychological disorder or staff confidence in intervening with highly distressed patients. (p27)

Rationale

Participants and setting

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772 A four-session programme was developed, following a literature review of teaching modalities Precourse, postcourse and six-month follow-up data were collected through confidence questionnaires

Literature review

Methods

Symptom Distres

Care Tenor

Relevant Dignity Model theme

Strengths: Focused specifically on nurses working in palliative care Good exploration of what ‘spirituality’ denotes, with regards to the person Clearly presents a section of implications for nursing care Provides theoretical exploration of ‘spirituality’ and emphasises that this is important for nurses to know, should they have patients who spiritual concerns Suggests that the naturalist approach is more appropriate to nursing practice over the spiritual alternative. Example scenarios are provided to strengthen this point Limitations: Reflective, not empirically based Strengths: Participants’ confidence between pre- and postcourse measures significantly increased in all areas (p = 00001) Increased confidence between precourse and six-month follow-up measures also proved to be statistically significant (p = 00001) These results can give confidence to implement the model into practice Study was concerned with Tier 2 staff managing psychological distress in patients with cancer and their family members. Thus, highly relevant The course was able to cover much of the issues that had emerged from the literature and was developed to fulfil the requirements set out in the Four-Tier Model as advocated by the National Institute of Health and Clinical Excellence (NICE, 2004) Limitations: Results should be interpreted with care, because the training facilitators may have had individual differences that contributed to better or worse confidence Confidence questionnaire has not been tested for reliability or validity

Findings summary

Review Dignity in care literature review

1757

1758

Golden Room/Golden Room Centres- place for dying that allows a peaceful experience, upholding dignity

Nurses’ perceptions of dignity-conserving care in the patient’s home

Karlsson and Berggren (2011)

Keegan and Drick (2011)

Life Review

Jenko et al. (2010)

References

Dignity-conserving care practice/intervention(s)/ tool(s)/perspective(s)

Table 2 (continued)

None

10 nurses with experience of end of life homecare from five municipalities in western Sweden

. . .it is increasingly common that the patients in the end of life phase choose to be cared for in their own home. Therefore it is vital to identify significant factors to prevent unnecessary suffering for dying patients and their families in end of life homecare. (p374)

The Golden Room physical environment exudes a sense of a place for rest and gentle being. (p288)

Literature review

None

Life review may be used to provide emotional and spiritual support to dying critical care patients and their families

Literature review

Qualitative interviews which were analysed using phenomenological hermeneutics

Methods

Rationale

Participants and setting

Social Support DignityConserving Practices

Care Tenor Level of Independence

DignityConserving Perspectives DignityConserving Practice

Relevant Dignity Model theme

Strengths: Article is appraising an evidence-based approach Guidance on how to begin a life review and how it may end Guidance includes comprehensive exploration of the key elements that constitute a good therapeutic relationship Relevance to critical care is explained Article also provides resource links to help nurses complete their own life review, which is encouraged to gain self-awareness before attempting to know others Negative consequences sparked by life reviews are also discussed and the advice is to recognise these issues, should they emerge, and intervene appropriately Limitations: Not an empirical research study/RCT testing the intervention – case studies are provided Strengths: Perceptions of nurses – reflecting on real life examples, thus relatable guidance Perceptions organised around three clear themes – safety, autonomy and integrity Further analysis is provided by using the work of Schuster (2006), to provide comprehensive understanding and further guidance. Identifies three nurse types – method oriented; neutral; good and gives examples Limitations: Sample – 10 community nurses, all female, from five urban communities in western Sweden All had professional experience of palliative homecare – this may not be the case for all nurses working in palliative care Strengths: Explains how the Golden Room can be an environment that preserves patient’s dignity Provides professional action steps Limitations: Hard to categorise the paper – it sits best as a literature review, but it is highly reflexive Golden Room is reflected upon with occasional reference to literature, but it would be useful to develop a research study around this to measure its effects as a viable intervention

Findings summary

B Johnston et al.

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Dignity-conserving care practice/intervention(s)/ tool(s)/perspective(s)

Inclusion of bedside objects in hospice

Identifying suffering and distress-related factors during end of life

References

Kellehear et al. (2009)

Krikorian et al. (2012)

Table 2 (continued)

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772 Suffering and distress are commonly found in palliative care settings. . .Although the terms frequently overlap, they express different experiences. (p799)

. . .could such objects have potential to indicate broader issues for patients such as their cultural or spiritual preferences? (p148)

Rationale Case study; Qualitative descriptive study Analysis of 176 photographs of patients’ objects analysed

Extensive literature review

None

Methods

31 inpatients in a hospice in UK

Participants and setting

Burden to Others Symptom Distress Social Support

Social Support DignityConserving Practice

Relevant Dignity Model theme

Strengths: Implies that objects bridge the home-institution gap Within the limits of an exploratory case study, reflects on gender differences between choices of objects This research has influenced hospice staff to engage in more creative ways to address dignity issues – this includes: >encouraging patients to bring personal items in confirmation letters >having bedding and soft furnishing in the rooms >adopting a philosophy to see the person for who they are and look beyond the illness Advises that to adhere to the National End of Life Strategy, which recommends spiritual needs assessment, the analysis of personal objects may be a good starting point/ prompt Limitations: Analysis restricted to assessing photographs – no data from patients’ own accounts as to what the objects mean to them Strengths: Clarifies the difference between ‘distress’ and ‘suffering’, which are often used interchangeably Insight into perspectives/thought processes that may patients at end of life might be facing – these may be useful for palliative care nurses to know and reflect upon Clearer guidance for palliative healthcare professionals provided under ‘Discussion and treatment implications’ Suggestions about treatment approaches are provided e.g. the Model Guide Patient and Family Care, which is a framework for healthcare assessment and intervention

Findings summary

Review Dignity in care literature review

1759

1760

Decision to speak about dying and death with geriatric patients

Impact of relational ethics on helping clinicians to alleviate existential distress in patients with cancer

Perceptions provided by people who are terminally ill, their family and staff

Lenherr et al. (2012)

Leung and Esplen (2010)

Natan et al. (2010)

References

Dignity-conserving care practice/intervention(s)/ tool(s)/perspective(s)

Table 2 (continued)

This study aimed to compare the importance attributed to different end of life needs by terminally ill older adult patients in long-term facilities, their families and care providers (physicians and nurses). (p299)

Many clinicians are unprepared to face the dilemmas and burdens or becoming emotionally involved with little support in the healthcare environment. (p30)

Research describing healthcare professionals’ conversations about issues of dying and death with chronically ill geriatric patients is rare, especially in Europe. (p2)

Rationale

73 patients with terminal illness; 58 family members, 71 physicians, 249 nurses from two Israeli geriatric centres

None

17 nurses and 14 physicians

Participants and setting

Descriptive, crosssectional study

Review of empirical research (n = 85) and literature review (n = 7)

Interview study Systematic content analysis

Methods

Symptom Distress Care Tenor

Care Tenor Symptom Distress

Care Tenor

Relevant Dignity Model theme

Strengths: Clearly concludes that early discussion of death and dying is conducive to good palliative care Identifies possible obstacles that may hinder staff conversations with patients about death and dying Suggest that more in-depth training is required to deal with conversations on death and dying Advises about how to approach this issue in clinical practice Limitations: Small sample size – conclusions cannot be generalised Only one palliative care setting i.e. geriatric hospitals – death and dying are pertinent to other settings also Strengths: Emphasis is on nurses’ experiences Guidance for clinicians in helping patients to achieve personally meaningful deaths that will preserve meaning, purpose and hope Themes identified are relevant to interpersonal processes Authors suggest that these themes are a helpful way to critically reflect on pertinent areas of cancer care Identifies relational ethics as a helpful guide to collective action, directing focus on relevant issues in connection to others suffering existential concerns Specific guidance is provided for frontline staff e.g. nurses. This encompasses recognising one’s own shared mortality, to help patients experience a ‘good’ death Strengths: Highlights where nurses’ perceptions of end of life care needs may differ from patients Identifies five key needs rated by patients as being the most important Highlights shared decision-making and clear communication as processes that are integral to quality end of life care Limitations: Caution should be taken when generalising, since sample of patients and family members were recruited from a single geriatric medical centre Might be difficult to use findings to reach conclusions about other subgroups of older adults

Findings summary

B Johnston et al.

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Dignity-conserving care practice/intervention(s)/ tool(s)/perspective(s)

Music

Dignity Card-Sort Tool (DCT) – initially 18 themes, which was narrowed down to 6 through Principal Component Analysis (PCA)

References

Norton (2011)

Periyakoil et al. (2009)

Table 2 (continued)

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772 This study was conducted to gain a better understanding of factors influencing erosion of dignity at the end of life. (p1125)

Many terminally ill patients retain an emotional vitality that too often lacks a suitable outlet. (p231)

Rationale

Initially 18-item tool administered to nurses (n = 83), nonhospice communitydwelling subjects (n = 190) and hospice patients (n = 26)

None

Participants and setting

Principal Component Analysis (PCA) was used to identify six primary factors from initial 18

Literature review

Methods

DignityConserving Perspectives DignityConserving Practices

DignityConserving Practice

Relevant Dignity Model theme

Strengths: Guidance on how to get the balance right between offering therapeutic musical intervention but avoid harm to patients Highlights evidence which suggests that music therapy has enhanced quality of life and alleviated physical and psychological symptom distress Limitations: More reflective than theoretical The case for music therapy may be strengthened by implementing into an RCT Strengths: Explains clearly how the DCT works – in itself, it could be seen as a Dignity-Conserving Practice, since it allows patients to rank the issues important to them Reports findings which suggests that perceptions of health professionals (including nurses) were significantly different from perceptions of patients (community dwelling and hospice). Explores why this might be Useful insight into factors that may lead to the erosion of dignity from perspectives of community-dwelling people, hospice patients and health professionals DCT is easily administered, requires little time and is flexible enough to be used by the patient themselves or administered by healthcare professional Limitations: This is a cross-sectional study, and perceptions of factors leading to loss of dignity may be subject to change depending on proximity to death. Better insight might be provided by conducting the study longitudinally through the trajectory of serious life-limiting illness DCT needs to validated in cross-cultural cohorts Also, ‘respect’ was one of the main six factors and is a culturally defined construct – thus further research is needed into culturally sensitive ways of providing respectful care

Findings summary

Review Dignity in care literature review

1761

1762

Characterising perceptions of multicultural longterm care nurses about patient dignity at the end of life

Guidance on what being a humanistic clinician constitutes

Comparing aromatherapy massage (AM) and cognitive behaviour therapy (CBT) for people with cancer who show symptoms of depression and/or anxiety

Periyakoil et al. (2013)

Sasser and Puchalski (2010)

Serfaty et al. (2012)

References

Dignity-conserving care practice/intervention(s)/ tool(s)/perspective(s)

Table 2 (continued)

No studies have directly compared these two treatments. (p563)

The humanities offer a framework for addressing the nonphysical aspects of chronic illness. (p936)

The goal of this mixedmethods study was to characterise the perceptions of multicultural long-term care nurses about patient dignity at the end of life. (p440)

Rationale

Patients at all stages of cancer from oncology outpatients clinics. These patients had a score of 8 or above for anxiety and/or depression on the Hospital Anxiety and Depression Scale (HADS)

None

45 long-term care nurses and 26 nursing home residents with terminal illness

Participants and setting

RCT- Patients were randomly allocated to Treatment as Usual (TAU) plus up to eight sessions of either AM (n = 20) or CBT (n = 19)

Mixed methods with participants completing the DCT and an open series of questions. Interviews were also used Grounded Theory methods used to analyse data Literature Review

Methods

Symptom Distress

Symptom Distress

Care Tenor DignityConserving Perspectives

Relevant Dignity Model theme

Strengths: Highlights six traits of the humanistic clinician as guidance into achieving person-centred care – compassion, empathy, narrative competence, meaning and courage Six traits supported by reflections on literature Limitations: Findings may be strengthened by empirical evidence Strengths: Advises where nurse training to deliver interventions effectively may be needed, e.g. that regarding people with advanced cancer, nurses may benefit in training to deliver CBT for anxiety but not depression First study of its kind to compare the two interventions and investigate whether they can be delivered Suggests applying CBT as suggested by Beck et al. (1979). Further explains the checklist the researchers used to cover certain areas Explains how AM was applied Provides details on patient outcome measures Limitations: Guidance is limited. Discussion mainly concerns feasibility issues, e.g. recruitment

Strengths: Useful data and providing guidance for future advances in understanding whether and how the cultural, ethnic and religious background of long-term care nurses influence the end of life care of their patients Limitations: Generalisability difficulties –nurses were from a single healthcare system and small sample size

Findings summary

B Johnston et al.

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Dignity-conserving care practice/intervention(s)/ tool(s)/perspective(s)

Using narrative to build empathy

Perspectives of nursing home residents

Conceptual model of dignity

References

Stanley and Hurst (2011)

Thompson et al. (2011)

van Gennip et al. (2013)

Table 2 (continued)

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772 208 bereaved family members, conducted in 21 NHs, Canada

34 patients with serious illness (cancer, early stage dementia or severe chronic illness) were selected from an extensive cohort study

. . .far less is known about how patients living with serious disease understand dignity. . . (p1080)

None

Respect and kindness are core principles of nursing practice, yet little is known about how they are experienced by nursing home (NH) residents at the end of life. (p96)

. . .while we live we make meaning by telling stories, by narrating life. (p39)

Rationale

Participants and setting

In-depth interviews

Retrospective survey using the After-Death Bereaved Family Member Interview (Teno, 2004)

Literature review

Methods

DignityConserving Perspectives Symptom Distress Care Tenor

Care Tenor Symptom Distress

DignityConserving Practice DignityConserving Perspectives

Relevant Dignity Model theme

Strengths: Explains how producing narratives is useful for both patients at end of life and staff caring for them. Benefits are identified and explained Guidance on how to use the narrative effectively Explains the relevance of narratives in palliative medicines Guidance on skills needed- identifies this as narrative competence Clear guidance regarding narrative medicine workshop structure, content and time Limitations: Findings may be strengthened by empirical evidence – implement narrative medicine in an RCT design study Strengths: Defines what respect and kindness mean and how nurses should employ them in practice Identifies the consequences of not employing respect and kindness in care Discusses implications for nurses’ practice and education Limitations: Study based on family perspectives of care – these may not be the same as patients’ perspectives Retrospective study – may not be as accurate After-Death Interview does not necessarily take into account all scenarios that could influence kindness and respect shown by staff, e.g. contact and communication Strengths: Insight into patients’ dignity at an earlier stage of the illness e.g. how they live with dignity – rare with research in palliative care, which tends to look at end of life The model itself can help facilitate care for seriously ill patients – offers insight into illness and dignity from individual patient perspective New model highlights person/subjective dignity which relates to existential issues, and is highly relevant in palliative care context Also discusses strategies for sensitive caregiving Limitations: Model is preliminary and requires further testing All participants had signed an advance directive – those who have not may have differences in conceptions of dignity

Findings summary

Review Dignity in care literature review

1763

1764

Nurses’ understandings of dignity

Development of care strategy based on survey responses

Yalden and McCormack (2010)

Yamagishi et al. (2010)

References

Dignity-conserving care practice/intervention(s)/ tool(s)/perspective(s)

Table 2 (continued)

Members of staff from multidisciplinary aged care team

662 bereaved adult family members of an adult patient with cancer, who had died in palliative care unit Part of the Japan Hospice and Palliative Care Evaluation Study

Dignity is an ubiquitous concept in an era of healthcare reform yet is referred to almost exclusively in terms of the quality of care delivered to support the experience of the patient rather than the caregivers engaged in the relationships of care. (p137)

. . .only a few quantitative empirical studies have investigated family members’ experiences when a terminally ill relative becomes unable to take nourishment orally. . . (p672)

Rationale

Participants and setting Part of doctoral study about the implementation of a palliative approach in residential aged care Emancipatory practice development methodology Co-creation of constructions of dignity with participants through reflexive activities Cross-sectional survey of bereaved family members of patients with cancer

Methods

Symptom Distress Care Tenor

Care Tenor

Relevant Dignity Model theme

Strengths: Includes a recommended care strategy in the light of study findings – four key steps which are: Relieving the family members’ sense of helplessness and guilt; Providing up-todate information about hydration and nutrition at end of life; Understanding family members’ concerns and providing emotional support; Relieving the patient’s symptoms Limitations: Further research required to measure effects of suggested care strategy on family members’ perceptions

Strengths: Themes are discussed with relevance to the staff and the workplace- identifies scenarios which are helpful for maintaining dignity Identifies implications for practice Limitations: Primarily focuses on dignity of staff

Findings summary

B Johnston et al.

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Review

Dignity in care literature review

€ Table 3 Dignity Model themes (Adapted from Chochinov et al. 2002 and used by Ostlund et al. 2012) Description

Illness-related concerns

Dignity-conserving repertoire

Social dignity inventory

Nine numbered main themes with subthemes underneath

How the illness itself affects personal feelings of dignity

How the patient’s own perspectives and practices can impact their sense of dignity

1. Level of Independence Cognitive Acuity Functional Capacity 2. Symptom Distress Physical Distress Psychological Distress

3. Dignity Conserving Perspectives Continuity of self Role preservation Generativity/legacy Maintenance of pride Hopefulness Autonomy/control Acceptance Resilience/fighting spirit 4. Dignity Conserving Practices Living ‘in the moment’ Maintaining normalcy Seeking spiritual comfort

How the quality of interactions with others can enhance or detract from one’s sense of dignity 5. Privacy Boundaries 6. Social Support 7. Care Tenor 8. Burden to Others 9. Aftermath Concerns

review, synthesis largely took the form of classifying conceptual constructs. Appraisal of the available evidence and classifying identified care actions under Dignity Model themes enabled gaps to be identified, which enabled potential research avenues to be identified. Thus, this integrative review also establishes a future research agenda.

Results Presentation of results In the next sections, Chochinov et al.’s (2002) Dignity Model main categories are described, and then the themes are elaborated upon and discussed in relation to data within the included articles. These concern evidence of dignity and dignity-conserving care (practice, interventions, tools, perspectives) and in particular, evidence of related care actions that were directed at nurses to guide them in their practice.

Illness related concerns These concerns materialise from the illness itself and could hinder the patient’s dignity (Chochinov et al. 2002). These may emerge as concerns around the extent of independence and distress around symptoms. Level of independence For people with serious illness, aspects of independence may be compromised throughout the course of the illness. According to the Dignity Model, this is a result of cognitive acuity and/or functional capacity (Dignity in Care 2010). © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Karlsson and Berggren (2011) identified key care actions, related to independence, thought to engender good end of life care, including allowing the patient to participate in their care (e.g. administering their own medication), giving them the opportunity to choose and having their wishes respected. This relates to interventions associated with the functional capacity element of Level of Independence (Dignity in Care 2010). Additional evidence relating to Level of Independence came from, Aoun et al. (2012), who indicated that care aides (assisting registered nurses) were welcomed by the participants in their study (palliative care patients in Australia), since they took over tasks that the person was no longer able to do, for example chopping vegetables, which then meant that they were encouraged to eat. Symptom distress Illness symptoms may affect the person both physically, psychologically and spiritually. Unsatisfactory management of these compromises dignity because of pain, depression, anxiety and uncertainty (Dignity in Care 2010). The literature also highlighted the need for patients to have their psychosocial needs met as well as physical, regardless of how challenging this is (Leung and Esplen, 2010, Bracegirdle 2010). Jenkins et al. (2010) evaluated a training programme aimed at honing health professionals’ (including nurses’) recommended skills around assessing psychological distress. The training package consisted of a four-session workshop that aimed to increase confidence in employing care actions to alleviate psychological distress. These included discussions of psychological concerns with cancer patients, helping patients to disclose worries; using

1765

B Johnston et al.

specific screening tools to detect such psychological problems; providing information to patients and family members that allow self-management of psychological distress; drawing upon team members’ knowledge; and managing one’s own feelings when addressing patients’ psychological distress. The researchers found that participants’ confidence increased between precourse and postcourse measures and also between precourse and six-month follow-up measures. In addition, Dwyer et al. (2009) explored nursing home staff’s experiences of dignity and found that meeting older people’s physical needs was important in engendering a basic sense of dignity. Care actions recommended involved keeping the person clean, feeding them and attending to their toileting needs. Similarly, Natan et al. (2010) found that not suffering in pain and attending to breathing difficulties were prioritised needs for terminally ill older patients. Appropriate care actions included patients being involved in their own care, being allowed to remain conscious, being kept updated on their condition and being given opportunities to discuss their fears. Having opportunities to learn about patients’ priorities in their care enables nurses and other healthcare professionals to modify care accordingly and cater for all aspects of symptom distress (Natan et al. 2010). Sasser and Puchalski (2010) provides guidance in how to become a humanistic clinician to attend to diverse symptom distress. Key elements involve showing compassion and empathy, having narrative competence and courage and finding meaning. Further direct guidance for alleviating symptom distress was provided in Serfaty et al.’s (2012) study on aromatherapy and Cognitive Behavioural Therapy (CBT), which showed that both interventions significantly improved mood, depression and anxiety. These are often interventions which nurses can achieve additional training/skills in (RCN 2004, NMC 2013).

Dignity-conserving repertoire Dignity-conserving repertoire refers to elements of patients’ psychological and spiritual landscape that impact on their dignity (Chochinov et al. 2002). Issues here often draw upon the person’s personality traits and internal resources, which may be revealed through their perspectives and practices. Dignity-conserving perspectives Dignity-Conserving Perspectives relate to the personal notions that people have and retention of these helps to preserve a sense of ‘themselves’ (Dignity in Care 2010).

1766

Dignity-Conserving Perspectives were covered in Alidina and Tettero’s (2010) study on the Multidimensional Model of Hope (MMH). Care-giving strategies for nurses are based on different dimensions of hope (affective, cognitive, behavioural, affiliative, temporal and contextual). For example, with regards to the cognitive dimension, which focuses on the processes by which individuals wish, perceive, interpret and judge in relation to hope (p. 355), the authors suggest that nurses can establish the patient’s perception of hope and clarify any misunderstandings, including that pertaining to disease or prognosis. Dignity-Conserving Perspectives were also found in Hack et al.’s (2010) study looking at the aftermath of Dignity Therapy [an intervention developed by Chochinov et al. (2005), empirically derived from the Dignity Model] for palliative care inpatients in Canada and Australia. Resulting transcripts were found to give clear indications about patients’ core values of dignity issues. Patients’ perspectives from this study included reflecting on accomplishments, rich experiences and elements of personality such as being caring. Further, the study considers whether healthcare providers, such as nurses, might enhance their therapeutic approach by understanding the core values of their patients and their own. One notable study was van Gennip et al. (2013), who developed a model which allowed patients’ insights on dignity to emerge. The model highlights the ways in which serious illness impacts on patients’ personal dignity. It may enable care to be implemented in a way that identifies dignity issues of the individual patient, allowing customised interventions to follow. For example, the model, developed from interviews with patients who had either cancer, early stage dementia or severe chronic illness, found it was stigmas associated with the illness that impinged on patients’ self-perception. Therefore, care actions should be orientated towards psychosocial and spiritual aspects of symptom management. However, further testing of this model is required as findings are limited by the fact that all participants had signed an Advance Directive. Dignity-conserving practices Dignity-Conserving Practices are practical approaches and strategies that may be employed by the person to retain or enhance dignity (Dignity in Care 2010). Activities that generated pleasure and enhanced dignity, for patients with palliative care needs included gardening, listening to music and reflecting on past hobbies (Hack et al. 2010). These revelations came about from Dignity Therapy, and allowed nurses to gain insight into perspectives, values and a sense of patients’ past and present © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Review

lifestyles. Jenko et al. (2010) drew similar conclusions from their exploration of Life Reviews. They provide guiding questions on how a life review may be introduced and suggest that this may benefit nurses in implementing therapeutic clinical interactions and, therefore, allowing patients’ to disclose their important issues. Likewise, the therapeutic value of music was also discussed by Norton (2011), who suggests that it can be a useful part of care to help those with terminal illnesses to express emotion and alleviate suffering. In addition issues derived from Dignity Therapy and Life Reviews may guide nurses in planning future activities or planning distraction techniques, centring on patients’ interests to help relieve symptom distress. Another suggested intervention for helping dignity-conserving care is the Dignity Card-Sort Tool (DCT) (Periyakoil et al. 2009) which allows patients to rank the issues most relevant to them, enabling nurses to learn about what might erode their dignity. Moreover, having nurses do this activity might expose their misconceptions as to what constitutes dignity, thus instigating more patient-centred care. Benefits gained from nurses taking part in activities designed for patients, were also identified in Stanley and Hurst’s (2011) study, which considered that producing narratives along with patients may enhance clinicians empathy and compassion.

Social dignity inventory Social Dignity Inventory refers to social issues or relationship dynamics that influence patients’ sense of dignity (Chochinov et al. 2002). Aspects that make up Social Dignity Inventory derive from the social environment of the person and beliefs about how other perceive them. Dignity in Care (2010) present several themes, which are the main factors that contribute to the Inventory: Privacy boundaries Issues of privacy emerge regardless of care environment and may vary according to individual (Dignity in Care 2010). Privacy was prevalent in Hanratty et al.’s (2012) study on older people’s experiences of transitions between end of life care settings. Home visits and provision of appliances impinged on people’s home lives, and hospital care was compromised when one patient was sent to have an X-ray in a revealing gown and when personal details were discussed in a waiting room. Care actions relating to privacy boundaries were not explicitly mentioned, but the authors highlight that this could be remedied by implementing simple changes. This revolves around being more mindful of dignity, respect and communication. © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Dignity in care literature review

Social support Social support comes from significant people in the person’s life (Chochinov et al. 2002). According to Hov et al. (2012), both nurses and families are sources of social support. Their findings suggest that nurses need to be astute and intuitive, since patients may not express clearly that they wish for company; signs may be indicated by patients holding the nurses hand or appearing calmer when a nurse is present. Moreover, when relatives could not be with the patient, ‘the nurses took on the role of the patient’s family’ (p54). This study found that having family members present contributed to good care and advocates using a system, which lists primary contacts so that nurses can learn more about the patient and the people important to them. Once key family members have been identified, suggested care actions include understanding family members’ concerns and providing them with emotional support (Yamagishi et al. 2010). This suggests that the remit of palliative caregivers extends to supporting the patients’ loved ones. Aoun et al. (2012) also discussed how care aides (to assist registered nurses) helped people to maintain social contact with friends. Having a special ‘Golden’ room, providing a homely environment, where loved ones could stay with the patients was recommended by Keegan and Drick (2011). If this is not feasible with limited resources, alternatively, patients could be encouraged to bring personal effects into the care environment (Kellehear et al. 2009), to help nurses gain insight into the person behind the illness. Care tenor This relates to the attitude and approach of the caregiver in particular in terms of their nonverbal behaviour towards the patient (Chochinov et al. 2002). The relationship between caregiver and the care receiver was a prominent theme in the literature Edwards et al. (2010) suggested that spiritual care is enabled when patients were able to be involved and in control of their care, for example receiving information and guidance relating to medication and treatments. The manner in which care was given was a key finding and revealed patients’ wishes for healthcare providers to be compassionate and show respect. Suggested care actions included letting patients set agendas and make their own choices. Healthcare providers are discouraged from remaining within rigid professional remits as patients often perceive them as family. Other skills deemed essential were for nurses to listen and convey empathy (Edwards et al. 2010, Hanratty et al. 2012), show kindness, warmth and genuineness,(Thompson et al. 2011, Hanratty et al. 2012), good communication

1767

B Johnston et al.

(Leung & Esplen 2010, Henry & Hayes 2013); early discussion of death and dying (Lenherr et al. 2012) and mutual respect (Leung & Esplen 2010). Barriers to good spiritual care were also identified by Edwards et al. (2010) and put down to lack of training in listening skills and uncertainties regarding how to carry out spiritual assessment. Hussey (2009) highlights that nurses need to have adequate background knowledge to deal with inevitable encounters regarding patients’ spiritual concerns. Recognising that nurses are prominent caregivers of psychosocial care, Hack (2012) also suggested that palliative care settings can have the role of ‘palliative care patient navigator’ who will advocate for patients and aid them in accessing palliative care services. Hov et al. (2012) found that good care could be facilitated by writing down patients’ wishes for treatment and care. However, the authors also note that care does not always comply with these wishes. Other clearly defined care actions were provided by Yamagishi et al. (2010), who devised a four-step care strategy. This consisted of Relieving the family members’ sense of helplessness and guilt; Providing up-to-date information about hydration and nutrition at end of life; Understanding family members’ concerns and providing emotional support; Relieving the patient’s symptoms. Burden to others As a patient with serious illness, the person may worry about being a burden to others in various ways (Chochinov et al. 2002). Concerns about being a burden to others are exacerbated significantly by loss of dignity and may lead to suicidal ideation (Krikorian et al. (2012). This theme was prevalent in Aoun et al.’s (2012) study on care aides and person alarms being used for people with terminal illness living at home, to assist the workload of registered nurses by extending the period of home care. The presence of care aides meant that needs could often be anticipated, without people having to ask for help. Likewise, the personal alarm was also helpful in enhancing emotional security with the knowledge that someone will come if the button is pressed, as opposed to calling someone over. However the authors note that in this Randomised Controlled Trial (RCT), some patients were not allocated appropriate care aides for their needs. Seeing the person rather than the patient and regular assessment of symptoms and syndromes are recommended care actions by Krikorian et al. (2012). Aftermath concerns These issues relate to worries about how the situation will be for those left behind after the person dies and may

1768

include funeral planning and finance (Chochinov et al. 2002, Dignity in Care 2010). Aftermath concerns were discussed in only one of the included articles. Hov et al. (2012) suggest that nurses play a role in helping patients prepare for the future, which includes matters after death. These authors do not discuss how this might be achieved, but based on findings discussed under other themes, it can be recommended that nurses approach this subject sensitively, talk to patients and listen. Dignity Therapy may also be a means of eliciting patients’ thoughts on this issue.

Discussion The nine Dignity Model themes were used to categorise care actions within the literature. Most care actions fitted under the theme of care tenor, the approach or attitude of the nurse, which gave specific insight into both patients’ preferences for care and can lead to guidance for nurses in how to employ dignity in care. The key elements seen to constitute good care were; good communication, listening, compassion and respect. Beyond stating these, some articles also provided guided directions that might help these values to materialise. For example, writing patients’ wishes down to keep a record (Hov et al. 2012), ensuring that patients receive adequate information (Edwards et al. 2010) and following a clear care strategy (Yamagishi et al. 2010). This theme was particularly well reported because barriers to good care were also identified. These included low staff levels, lack of privacy, high workloads, lack of time, fast turnovers, compassion fatigue, uncertainties about the meaning of spiritual care, being judgemental and lack of training (Edwards et al. 2010). As a prominent theme, care tenor also linked closely to other themes, for example Symptom Distress, Dignity-Conserving Perspectives and Dignity-Conserving Practices. Symptom Distress was discussed in terms of both physical and psychological care needs. Physical care needs were often regarded as the first step in employing basic dignity (Dwyer et al. 2009, Natan et al. 2010). This might explain why care actions were not elaborated upon. Managing nonphysical symptoms such as psychological aspects and spiritual distress was recognised as more challenging. The general care actions deemed as useful included having good rapport, showing compassion and empathy (Sasser & Puchalski 2010), The endeavour to relieve psychological distress also allowed interventions and specific practices to be proposed such as Aromatherapy and CBT (Serfaty et al. 2012) and making time to elicit patients’ perspectives of key care priorities (Natan et al. (2010). Strategies for acquiring these were provided © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Review

under the theme Dignity-Conserving Perspectives and Dignity-Conserving Practices. Allowing the person the opportunity to convey DignityConserving Perspectives was useful for both patient and nurse (Hack et al. 2010). Often Dignity-Conserving Perspectives were gained through patients undergoing activities which could be seen as Dignity-Conserving Practices such as Dignity Therapy, ranking dignity issues and having a Life Review (Periyakoil et al. 2009, Hack et al. 2010, Jenko et al. 2010). Generally, the consensus was for nurses to also participate in these activities to learn about themselves and achieve a competency that would allow them appreciate patient perspectives. Doing activities that were identified as enjoyable for patients were seen as dignity-enhancing, such as gardening, listening to music and reflecting (Hack et al. 2010, Norton 2011). These could often be learned about through the strategies used to elicit Dignity-Conserving Perspectives. This suggests that nurses can use information gained from interventions such as Dignity Therapy to organise activities that might be dignity-conserving for patients. Privacy boundaries affected hospital and home palliative environments (Hanratty et al. 2012) and, suggested care actions were not thought to require extensive resources. The ideal strategies were acting with respect, choice communication and be mindful of dignity. Social support showed how the presence of family members was beneficial to care. Hov et al. (2012) highlighted a possible system of keeping primary contacts, which would then allow nurses to get to know them. Interestingly Social support revealed nurses play a significant role in providing this in addition to family members. Care actions need to form around intuition (Hov et al. 2012). This shows support for the intuitive humanist model (Banning 2007), which relates to decision-making in nursing. With regards to burden to others, the repercussions could be severe leading to possible suicide ideation (Krikorian et al. 2012). Approaches such as perceiving the patient as a person and employing regular assessments were suggested by Krikorian et al. (2012). In addition, interventions were also suggested, such as the provision of a care aide for terminally ill people living on their own (Aoun et al. 2012) to lessen hospital care that might go against patients’ wishes. Care aides were favourable since they allowed needs to be met without the person having to ask for help. Dignity Model themes that were not easily applied to reported care actions in the literature included level of independence. This might be because independence-related issues fit more appropriately under other themes. Karlsson and Berggren (2011) discussed the notion of involving the patient in treatment which could enhance their independence. © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Dignity in care literature review

Aoun et al. (2012) discussed the role of care aides in assisting people living at home with tasks such as cooking. However, this does not address similar concerns for those in hospital or hospice palliative care settings. Overall, the fact that this theme was sparse in the reviewed literature might reveal a need for research to address these issues more prominently to establish guidance for care actions. Care actions around aftermath concerns were not explicitly stated; this was also the case in the previous review by € Ostlund et al. (2012). Based on findings garnered from other themes, it can be surmised that talking and listening to patients sensitively may extract such concerns and then appropriate actions can be taken. McClement et al. (2004) have suggested that care actions could include encouraging the dying persons’ reflections about fear, regarding the challenges their significant others may face after their death, help with prioritising and attending to prioritised issues. This study’s limitations are based on methodological issues. Inclusion of studies relied on critical appraisal based on arguably subjective criteria. This might have led to relevant articles being excluded. Furthermore, using the Dignity Model as a predefined framework to analyse the articles might have overlooked other significant themes. However, the Dignity Model was chosen based on its strong empirical evidence base, comprehensiveness and flexibility to accommodate an array of relevant dignity issues (Chochinov 2002), as well as the fact that the model is the theoretical framework for the DCI itself.

Conclusion This integrative review has explored the available, relevant literature on dignity and dignity-conserving care, using the themes from the Dignity Model as a framework to appraise the literature. This enabled care actions to be identified and discussed critically. Most themes could be related to corresponding care actions. However, the sparse presence of Level of Independence and Aftermath Concerns in the literature meant that relatable care actions had to be formulated independently. This suggests that future research should be structured around these areas to determine appropriate care actions for nurses to give dignity-conserving care.

Relevance to clinical practice It is recognised that people receiving care in palliative care settings welcome dignity-conserving care to help maintain the highest level of well-being possible (Chochinov et al. 2002). However, this is fraught with challenges due to lack

1769

B Johnston et al.

of guidelines and insufficient training for nurses charged with working in such environments (Vosit-Steller et al. 2013). Government rhetoric continues to highlight dignity as a pertinent theme on the agenda, but also highlight that it can only manifest successfully if healthcare professionals are adequately equipped (DH 2008). Irish government approaches to palliative care have been criticised for not taking into account the large number of people who die in acute and residential care services (May et al. 2014). Renewed consideration of the 2001 National Advisory Council on Palliative Care report suggests that dignity and holistic care are still at the heart of plans for palliative care services (Health Services in Ireland (HSE) 2013). However, more research such as this review is required to provide evidence-based care actions that will enable dignity to be conserved in palliative care settings. Good examples of palliative care practices are needed so that services can develop effectively (WHO 2011). This integrative review has assessed current evidence into dignity-conserving care actions in the form of tools, interventions, perspectives and reported practice. Organisation of the data around the themes within Chochinov et al.’s (2002)

Dignity Model has allowed evidence to be synthesised using an appropriate framework that conveys the empirical and theoretical evidence clearly on dignity-conserving care. The appraisal of such evidence has helped ascertain the extent to which guidelines are available for nurses to employ dignityconserving care. This review has also contributed to establishing a future research agenda that can help improve this complex area of palliative care. More targeted research and developed interventions to enhance dignity-conserving care and guidance for healthcare professionals will help those receiving palliative care to benefit from dignity-conserving care founded in a rich evidence-base.

Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethi cal_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content and (3) final approval of the version to be published.

References Alidina K & Tettero I (2010) Exploring the therapeutic value of hope in palliative nursing. Palliative and Supportive Care 8, 353–358. Andrew J, Johnston B & Papadopoulou C (2013) Community nurses’ participation in palliative care research: the Dignity Care Pathway. British Journal of Community Nursing 18(7), 326–331. Aoun S, O’Connor M, Skett K, Deas K & Smith J (2012) Do models of care designed for terminally ill “home alone” people improve their end-of-life experience? A patient perspective. Health & Social Care in the Community 20, 599–606. Banning M (2007) A review of clinical decision making models and current research. Journal of Clinical Nursing 17, 187–195. Beck AT (1979) Cognitive therapy and the emotional disorders. London Penguin. Bracegirdle L (2010) Ensuring patient choices about dignity and place of death are respected at the end of life. Nursing Times 106, 22–24. € Brown H, Johnston B & Ostlund U (2011) Identifying care actions to conserve

1770

dignity in end-of-life care. British Journal of Community Nursing 16, 238–245. Buck HG (2008) The Geriatric Cancer Experience in End of Life: Model Adaptation and Testing. Graduate Theses and Dissertations. Available at: http://scholarcommons.usf.edu/etd/151 (accessed 7 September 2014). Chochinov HM (2002) Dignity-conserving care- a new model for palliative care. Journal of the American Medical Association 287, 2253–2260. Chochinov HM, Hack T, McClement S, Kristjanson L & Harlos M (2002) Dignity in the terminally ill: a developing empirical model. Social Science & Medicine 54, 433–443. Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S & Harlos M (2005) Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life. Journal of Clinical Oncology 23, 5520–5525. Chochinov HM, Krisjanson LJ, Hack TF, Hassard T, McClement S & Harlos M (2006) Dignity in the terminally ill: revisited. Journal of the American Medical Association 287, 2253–2260.

Department of Health (DH) (2008) End of Life Care Strategy, Promoting High Quality Care for All Adults at the End of Life. Available at: https://www. gov.uk/government/uploads/system/up loads/attachment_data/file/136431/End_ of_life_strategy.pdf (accessed 10 October 2014). Department of Health (DH) (2013) More Care, Less Pathway. A Review of the Liverpool Care Pathway. Available at: https://www.gov.uk/government/ uploads/system/uploads/attachment_ data/file/212450/Liverpool_Care_Path way.pdf (accessed 10 October 2014). Department of Health (DH) (2014) One chance to get it right, improving people’s experience of care in the last few days and hours of life. Leadership Alliance for the Care of Dying People. Available at: https://www.gov.uk/ government/uploads/system/uploads/att achment_data/file/323188/One_chance_ to_get_it_right.pdf (accessed 10 October 2014). Detering KM, Hancock AD, Reade MC & Silvester W (2010) The impact of advance care planning on end of life care in elderly patients: randomised

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Review controlled trial. British Medical Journal 340, c1345. Dignity in Care (2010) Dignity Interventions, Dignity in Care. Available at: http://dignityincare.ca/en/faq-toolkit.html (accessed 7 September 2014). Dwyer L-L, Andershed B, Nordenfelt L & Ternestedt B-M (2009) Dignity as experienced by nursing home staff. International Journal of Older People Nursing 4, 185–193. Edwards A, Pang N, Shiu V & Chan C (2010) Review: The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: a meta-study of qualitative research. Palliative Medicine 24, 753– 770. Emanuel DJ, & Emanuel LL (1998) The promise of a good death. Lancet, 351, 21–29. Gallagher A, Li S, Wainwright P, Jones IR & Lee D (2008) Dignity in the care of older people: a review of the theoretical and empirical literature. BioMedCentral Nursing 7, 7–11. van Gennip IE, Pasman HRW, OosterveldVlug MG, Willems DL & OnwuteakaPhilipsen BD (2013) The development of a model of dignity in illness based on qualitative interviews with seriously ill patients. International Journal of Nursing Studies 50, 1080–1089. Guo Q & Jacelon CS (2014) An integrative review of dignity in end-of-life care. Palliative Medicine 28, 931–940. Hack TF (2012) New directions in psychosocial interventions in palliative care. Palliative Medicine 26, 681–682. Hack TF, Chochinov HM, Hassard T, Kristjanson LJ, McClement S & Harlos M (2004) Defining dignity in terminally ill cancer patients: a factoranalytic approach. Psycho-Oncology 13, 700e708. Hack TF, McClement SE, Chochinov HM, Cann BJ, Hassard TH, Kristjanson LJ & Harlos M (2010) Learning from dying patients during their final days: life reflections gleaned from dignity therapy. Palliative Medicine 24, 715– 723. Hanratty B, Holmes L, Lowson E, Grande G, Addlington-Hall J, Payne S & Seymour J (2012) Older adults’ experiences of transitions between care settings at the end of life in England: a qualitative interview study. Journal of

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Dignity in care literature review Pain and Symptom Management 44, 74–83. Health Services in Ireland (HSE) (2013) Palliative Care Services - Five Year/ Medium Term Development Framework. HSE, Dublin, Ireland. Henry C & Hayes A (2013) Providing high-quality end-of-life care universally. Nursing Times 109, 16–18. Hov R, Hedelin B & Athlin E (2012) Nursing care for patients on the edge of life in nursing homes: obstacles are overshadowing opportunities. International Journal of Older People Nursing 8, 50–60. Hussey T (2009) Nursing and spirituality. Nursing Philosophy 10, 71–80. Imperial College Healthcare NHS Trust (2014) Palliative Care. Available at: http://www.imperial.nhs.uk/services/ palliativecare/index.htm (accessed October 2014). Irish Hospice Foundation (2008) Palliative care for all, integrating palliative care into disease management frameworks. Joint HSE and IHF Report of the Extending Access Study. Irish Hospice Foundation, Dublin. Jacelon CS, Connelly TW, Brown R, Proulx K & Vo T (2004) A concept analysis of dignity for older adults. Journal of Advanced Nursing 48, 76–83. Jenkins K, Alberry B, Daniel J, Dixie L, North V, Patterson L, Pestell S & North N (2010) Beyond communication: the development of a training program for hospital and hospice staff in the detection and management of psychological distress- preliminary results. Palliative and Supportive Care 8, 27–33. Jenko M, Gonzalez L & Alley P (2010) Life review in critical care: possibilities at end of life. Critical Care Nurse 30, 17–27. € Johnston B, Ostlund U & Brown H (2010) Dignity in end of life care. European Oncology Nursing Society Newsletter Autumn, 10–12. € Johnston B, Ostlund U & Brown H (2012) Evaluation of the Dignity Care Pathway for community nurses caring for people at the end of life. International Journal of Palliative Nursing 18, 483–489. Johnston B, Buchanan D, Papdopolou C, Andrew J & Chochinov H (2014) How a Dignity Care Intervention can improve care by community nurses to

people in the last months of life. British Medical Journal Supportive & Palliative Care 4, A1. Doi: 10.1136/ bmjspcare-2014-000654.2. Karlsson C & Berggren I (2011) Dignified end-of-life care in the patients’ own homes. Nursing Ethics 18, 374–385. Keegan L & Drick CA (2011) A new place for death with dignity: the golden room. Journal of Holistic Nursing 29, 287–291. Kellehear A, Pugh E & Atter L (2009) Home away from home? A case study of bedside objects in a hospice. International Journal of Palliative Nursing 15, 148–152. Krikorian A, Limonero JT & Mate J (2012) Suffering and distress at endof-life. Psycho-Oncology 21, 799–808. Lenherr G, Meyer-Zehnder B, Kressig RW & Reiter-Theil S (2012) To speak, or not to speak- do clinicians speak about dying and death with geriatric patients at end of life? Swiss Medical Weekly 142, w13563. Leung D & Esplen MJ (2010) Alleviating existential distress of cancer patients: can relational ethics guide clinicians? European Journal of Cancer Care 19, 30–38. May P, Hynes G, McCallion P, Paynea S, Larkind P & McCarron M (2014) Policy analysis: palliative care in Ireland. Health Policy 115, 68–74. McClement SE, Chochinov HM, Hack TF, Kristjanson LJ & Harlos M (2004) Dignity-conserving care: application of research findings to practice. International Journal of Palliative Nursing 10, 173–179. Natan MB, Garfinkel D & Shachar I (2010) End-of-life needs as perceived by terminally ill older adult patients, family and staff. European Journal of Oncology Nursing 14, 299–303. National Institute for Clinical Excellence (2004) Improving supportive and palliative care for adults with cancer: the manual. London, National Institute for Clinical Excellence. Norton K (2011) How music-inspired weeping can help terminally ill patients. Journal of Medical Humanities 32, 231–243. Nursing Medical Council (NMC) (2013) Complementary and Alternative Therapies. Available at: http://www.nmc-uk.

1771

B Johnston et al. org/Nurses-and-midwives/Regulation-inpractice/Regulation-in-Practice-Topics/ Complementary-and-alternative-therapies/ (accessed October 2014). € Ostlund U, Brown H & Johnston B (2012) Dignity conserving care at end-of-life: a narrative review. European Journal of Oncology Nursing 16, 353–367. Periyakoil VS, Chmura Kraemer H & Noda A (2009) Creation and the empirical validation of the dignity card-sort tool to assess factors influencing erosion of dignity at life’s end. Journal of Palliative Medicine 12, 1125–1130. Periyakoil VS, Stevens M & Kraemer H (2013) Multicultural long-term care nurses’ perceptions of factors influencing patient dignity at the end of life. Journal of the American Geriatrics Society 61, 440–446. RCN (2004) The Future Nurse: The RCN Vision Explained. Royal College of Nursing, London. Sasser CG & Puchalski CM (2010) The humanistic clinician: traversing the science and art of health care. Journal of Pain and Symptom Management 39, 936–940. Schuster M Profession and existence. A hermeneutical study of asymmetry and reciprocity in the nurses’ encounters

1772

with severely ill patients. G€ oteborg, Bokf€ orlaget Daidalos AB, 2006 (in Swedish). Serfaty M, Wilkinson S, Freeman C, Mannix K & King M (2012) The ToT Study: helping with Touch or Talk (ToT): a pilot randomised controlled trial to examine the clinical effectiveness of aromatherapy massage versus cognitive behaviour therapy, for emotional distress in patients in cancer/ palliative care. Psycho-Oncology 21, 563–569. Stanley P & Hurst M (2011) Narrative palliative care: a method for building empathy. Journal of Social Work in End-ofLife & Palliative Care 7, 39–55. Teno JM, Clarridge BR, Casey V, Welch LC, Wetle T, Shield R & Mor V (2004) Family perspectives on end-oflife care at the last place of care. Jama 291(1), 88–93. Thompson GN, McClement SE & Chochinov HM (2011) How respect and kindness are experienced at the end of life by nursing home residents. Canadian Journal of Nursing 43, 96–118. Torraco RJ (2005) Writing integrative literature reviews: guidelines and examples. Human Resource Development Review 4, 356–367. Tranter S, Irvine F & Collins E (2012) Innovations aimed at improving the

physical health of the seriously mentally ill: an integrative review. Journal of Clinical Nursing 21, 1199–1214. Vosit-Steller J, Swinkin J & McCabe K (2013) Perception of dignity in older people and at end of life. End of Life Journal 3, 1–7. Whittemore R & Knafl K (2005) The integrative review: updated methodology. Methodological Issues in Nursing Research 52, 546–553. World Health Organisation (WHO) (2011) Palliative Care for Older People: Better Practices. WHO Regional Office for Europe, Copenhagen, Denmark. World Health Organization (WHO) (2002) Definition of Paliative Care. WHO, Geneva. Yalden BJ & McCormack B (2010) Constructions of dignity: a pre-requisite for flourishing in the workplace? International Journal of Older People Nursing 5, 137–147. Yamagishi A, Morita T, Miyashita M, Sato K, Tsuneto S & Shima Y (2010) The care strategy for families of terminally ill cancer patients who become unable to take nourishment orally: recommendations from a nationwide survey of bereaved family members’ experiences. Journal of Pain and Symptom Management 40, 671–683.

© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1743–1772

Dignity-conserving care in palliative care settings: An integrative review.

To report an integrative review of evidence relating to dignity-conserving care in palliative care settings. It will also suggest avenues for future r...
337KB Sizes 0 Downloads 10 Views