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Improving dementia care in nursing homes: experiences with a palliative care symptom-assessment tool (MIDOS) Norbert Krumm, Philip Larkin, Michael Connolly, Peter Rode, Frank Elsner

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s the population ages, health and social care services will come under pressure to provide for the needs of older people with a wider range of co-morbid disease (Hall et al, 2011). In Germany, article § 37 b SGB V (Bundesministerium der Justiz, 2007) states that patients or residents have the right to receive specialised palliative care provision in their own home. Since this law was ratified, the need for palliative care provision in nursing homes has significantly increased. Thus, it has become important to find a common language to describe the practice of palliative care for all, including individuals with advanced dementia. One aspect of interest is the critical assessment of existing documentation tools in palliative care, as this provides a basic understanding of how the palliative care approach may be enacted in practice. This study focussed on the use of a palliative care symptom assessment tool—the Minimal Documentation system for Palliative care (MIDOS) tool—in a specialised environment caring for people with advanced dementia.

Methodology

Ethical approval

The ethical committee at the Institute of Technology of North Rhine-Westphalia (RWTH) University Hospital Aachen approved the study.

Study design As there is limited knowledge about nurses’ perceptions of the use of a palliative care symptom assessment tool in the care of people with dementia, a qualitative multiple-unit study design was used (Yin, 2009).

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Setting The setting for the study was three nursing homes run by a regional service provider that operates four nursing homes with a total capacity of 387 inpatients and offers hospice support. The three institutions have specialised or protected clinical areas for people with dementia. At the

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Abstract

Background: In the past decade, the palliative care approach has been used in the care of frail older people living with debilitating chronic conditions, including dementia. Aim: To describe health professionals’ experiences of assessing the symptoms of people with dementia using a cancer-patient-oriented symptom-assessment tool from a palliative care context. Method: This was a qualitative study that used semi-structured interviews (n=13) with clinical staff in three nursing homes prior to and following the implementation of the Minimal Documentation system for Palliative care (MIDOS) tool for assessing symptoms over a period of 6 weeks. Results: Baseline interviews showed specific concerns about symptom assessment, such as uncertainty about underlying symptoms in residents who appeared to be in distress. After the implementation of the MIDOS tool, participants reported that daily use of the tool was perceived as helpful in evaluating symptoms other than pain and improved internal communication between staff regarding clinical decision making. Conclusion: The MIDOS tool was perceived as a helpful and valuable complement to existing tools. Participants expressed some concerns regarding the subjective nature of perceiving symptoms and clinical decision making. The use of tools such as the MIDOS tool has the potential to enhance the quality of palliative care in dementia care. Key words: Palliative care l Dementia care l Symptom assessment l Documentation l Carers’ experiences l MIDOS

time of the study, these three specialised units each cared for between 12 and 27 residents with advanced dementia. Residents were diagnosed with various types of dementia, including Alzheimer’s disease, vascular dementia, multiinfarct dementia, and Korsakoff’s syndrome. The severity of the residents’ dementia was described by the care staff as advanced, with evidence of communication difficulties and behavioural challenges in the majority. More detailed information on diagnosis and functional status was not collected as restricted access to documentation was a condition for ethical approval of the study. The participating teams in the units consisted of qualified nurses as well as other carers with varying levels of training and experience.

For a full list of author affiliations, see Box 1. Correspondence to: Norbert Krumm [email protected]

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Norbert Krumm is Research Assistant, Department of Palliative Medicine, University Hospital RWTH Aachen University, Pauwelsstraße 57, 52074 Aachen, Germany; Philip Larkin is Professor of Clinical Nursing (Palliative Care), Head of Discipline Children’s Nursing, and Director of Clinical Academic Partnership, UCD School of Nursing, Midwifery and Health Systems and Our Lady’s Hospice and Care Services, UCD College of Health Sciences, Ireland; Michael Connolly is Lecturer, UCD School of Nursing, Midwifery and Health Systems, and Head of Education, All Ireland Institute of Hospice and Palliative Care Education & Research Centre, Our Lady’s Hospice, Ireland; Peter Rode is Head of Nursing, Aachen Caritas Services, Germany; Frank Elsner is Professor of Palliative Medicine, Anaesthesiologist, Pain Specialist, and Acting Head of Department, Department for Palliative Medicine, University Hospital RWTH Aachen University, Germany

In all three of the units, documentation of older-person dementia care was mainly a paperbased standardised documentation system, which had to be completed by trained staff at the end of every shift. Verbal communication between all carers, regardless of their level of training, about the residents’ condition and care needs routinely occurred at the unit staff hand­ over. The pain assessment tools used in the units (the Numerical Rating Scale and the German version of the Pain Assessment in Advanced Dementia Scale (PAINAD) (Basler et al, 2006)) were not part of the daily routine. Nevertheless, all residents were assessed for pain routinely every 6 months. In the past year all three teams had at least one contact with either a pain specialist or a palliative care team in relation to the care of patients with dementia.

The MIDOS tool The MIDOS tool is a simple one-page symptomassessment tool for use in palliative care. It includes a four-point verbal rating scale (none, mild, moderate, strong) for the assessment of pain, nausea, vomiting, dyspnoea, constipation, weakness, lack of appetite, tiredness, depressive mood, anxiety, and other symptoms, as well as a question regarding wellbeing with a five-point rating scale (very bad, bad, moderate, good, excellent). The tool can be used for either self-assessment or assessment by caregivers to identify symptoms. It has been validated by a German research group (Stiel et al, 2010) and its routine use in palliative care is recommended by the German Association of Palliative Medicine and the German Hospice and Palliative Association (Lindena and HOPE Koordinationsgruppe, 2012). The MIDOS tool has become one of the most frequently used tools in palliative care in Germany, which contributed to the rationale for choosing it for this particular study.

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Sampling The criteria for sample selection were defined in light of Morse’s considerations about privileged informants who have relevant knowledge and experience of the phenomenon under study, possess reflexive skills, have the ability to express themselves, and are willing to participate in the study (Morse, 1994). The target group (n=15) for the interviews were staff members including nurses and care assistants from the specialist dementia units in the three collaborating nursing homes. A member of each unit’s management was included as well as at least two nurses and care assistants engaged in providing essential nursing care to the residents with dementia. Essential nursing care was defined as the provision of physical, psychological, social, and spiritual care. It is provided by nurses and care assistants under the supervision of nurses. The inclusion criteria were: ●●Qualified nurses with at least 1 year’s experience in the clinical field and in delivering essential nursing care ●●Qualified nurses with 160 hours of palliative care training ●●Care attendants. Exclusion criteria were: ●●Nurses with less than 1 year’s experience ●●Agency nurses. All qualified nurses had received a minimum of 3 years of training in the care of older people or general adult care. One of the unit managers failed to participate in the post-intervention interview owing to extended sick leave.

Data collection Data were collected using semi-structured openended interviews pre- and post-implementation, focussing on the participants’ subjective views, perceptions, experiences, and thoughts about having and using a symptom-assessment tool. The first four interviews were conducted by a trained research assistant (fourth-year medical student) under the supervision of the principal investigator (NK). All of the other interviews were completed by the principal investigator. The interviews were digitally recorded and transcribed verbatim by the research assistant and the principal investigator. The interviews were translated by NK and a native English-speaking medical student and proofread by MC and PL. Pre-implementation interviews The pre-implementation interviews included discursive questions on current practices in symptom assessment and on perceptions of the use of assessment tools in units caring for people with

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Box 1. Author affiliations

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dementia. In effect the staff were asked to consider what an ideal tool for symptom assessment in dementia care would look like.

three units. These key themes were defined as contact, language and communication, and expectations of assessment tools.

Implementation Implementation was defined as use of the MIDOS tool with six residents with dementia during daily routine care over a 6-week period. This meant that in both day shifts a MIDOS sheet for one resident had to be completed by the qualified nurse.

Contact Being in close contact with the residents seemed to be crucial for the participants. Participants from units 1 and 3 described this biographical approach as ‘knowing’ the person.

Post-implementation interviews The post-implementation interviews were based on critical incident technique (CIT) (Flanagan, 1954), which has become a common tool in nursing research (Cormack, 1983; Benner, 1984; Norman et al, 1992). In order to provide critical examples of the use of the MIDOS tool, participants were asked to describe what happened when they used it. They were invited to report on one unit that had a positive outcome as a result of using the symptom assessment tool as well as one unit that had an inadequate or poor outcome. The staff were also invited to comment on whether the MIDOS tool would fit the criteria of a functional tool for symptom assessment in the dementia population.

Data analysis The 13 pre-implementation interviews across the three units had a mean duration of 11.31 minutes (unit 1 mean: 13.10 minutes, unit 2 mean: 10.08 minutes, unit 3 mean: 11.17 minutes). The postimplementation semi-structured interviews (n=13) had a mean duration of 16.51 minutes. The verbatim transcripts were analysed using an inductive reasoning process and the qualitative data analysis software MAXQDA 10 (VERBI GmbH). The procedure of content analysis was carried out as developed by Gläser and Laudel (2006). The transcripts were analysed for relevant information. Information that arose from the data was extracted and then sequentially coded. All units were analysed separately and in a cross-units analysis (Yin, 2003).

Findings

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Pre-implementation interview cross-analysis Data from the three units were analysed to identify similarities and differences between them. This was done to provide further insight into the issues associated with symptom assessment in the teams by analytically generalising the within-unit study results. The key themes that emerged indicated that there were similar concerns in all

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‘To find a biographical approach on the basis of symptoms, whether there may be some, yes, information already existing, which may suggest to me that has to do with it, or it deals with the situation.’ (C3/03)

❛... it has become important to find a common language to describe the practice of palliative care for all, including individuals with advanced dementia.❜

It appeared that symptoms were perceived in a holistic way in which psychosocial and spiritual concerns were also taken into account when assessing the physical expression of a symptom. Language and communication As would be expected, communication seemed to be a central theme. All areas of communication (verbal and non-verbal including written) were taken into account. Expectations of a new assessment tool were expressed in terms of improving the use of written language or the documentation itself, including a critical comment on the common practice of using report sheets with free text for documentation of assessment. Expectations of assessment tools Expectations of an assessment tool in general were also linked to the specific clinical picture of the person with dementia. ‘In my view, uh, it should be intended for people with dementia; it should also include pathologies, or restlessness, uh, in the evaluation criteria and it would be best if it’s individually applicable … to the individual and not uh, a blunt instrument, uh, but, uh, rather that one can bring in some individuality in the form.’ (C3/03)

Staff also alluded to their expectations of the way in which an assessment tool contributed to the care work and skills mix of the teams, which included carers with different levels of training. Thus, participants highlighted the importance of implementing a tool that could be easily explained to all staff.

CIT analysis Following the CIT approach the participants were invited to talk about their experiences of

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using the MIDOS tool, identifying one positive and one negative experience when administering it. All participants found it difficult to report on a specific positive or negative experience in applying the tool when caring for a particular resident. Underlying reasons for this difficulty related to part-time work resulting in a lack of continuity in care and the participants’ perception that residents were not currently experiencing challenging or complex symptoms. Therefore, the majority of the participants reported more generally on their perception of the method of assessment or on particular characteristics of the MIDOS tool. The themes that emerged from the analysis of the post-intervention interviews were defined as expanding horizons in assessment to other symptoms beyond those predominantly perceived as important and clarity of the tool as a supporting feature in documentation. Expanding horizons Participants reported that assessment to date had focussed mainly on pain and agitation, and that specialised observation tools were used to assess these two symptoms. Surprisingly, the MIDOS tool helped to expand the participants’ awareness of other possibly distressing symptoms that might not have been identified in routine assessment. ‘Loss of appetite could be rated excellently and weariness and, uh, weakness because it was easy to differentiate [on the categorical scale].’ (C2/03)

An outcome from using the MIDOS tool that was rated positively was the ability to continuously assess symptoms other than pain or restlessness, e.g. tiredness, with a subsequent increase in awareness of symptoms that previously may not have been communicated or reported. Clarity This theme was strongly connected to having clear and usable documentation to plan and implement care. The ability to swiftly acquire a global overview of the progression of symptoms and response to treatment was mentioned as a good feature of the MIDOS tool. Four subthemes exemplified different aspects of the need for clarity: continuity in documentation of care, a useful addition to standard documentation, rating symptoms, and completing documentation appropriately. Clarity: continuity in documentation of care The positive effects of continuity in documentation of care were emphasised and enabled staff to

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orient themselves to the present status of the resident when returning to duty from time off and at change of shift. Participants were particularly positive about the format of the MIDOS tool, seeing it as clearly laid out and therefore highly useful in the clinical area: ‘This is because you have it in front of you and there [it] is reported if the resident was very tired today.’ (C2/04)

Clarity: a useful addition to standard documentation The MIDOS tool was identified by individual participants as a valuable addition to the existing documentation. Its overall potential as a part of a group of assessment tools was acknowledged: ‘But in the future it [the MIDOS tool] can be given in one or the other residents, it could be added to the standard documentation.’ (C1/01)

However, participants failed to identify specific examples of other residents currently in their care who might benefit from assessment using the MIDOS tool. This may be rooted in the general problem of identifying the benefits for residents being cared for using a palliative care approach. Clarity: rating symptoms Perceptions around whether there were any benefits to using rating scales in the MIDOS tool were mixed, and these scales were reported as rather difficult by some participants. Further, general considerations highlighted again the inapplicability of the MIDOS tool in the dilemma of deciding on what the underlying symptom is, e.g. pain or restlessness. Clarity: completing documentation appropriately One evidently poor outcome in the use of the MIDOS tool was cited by one participant in reporting her experience of exploring different information both verbally and with the tool. This example did, however, reflect the expectations of the CIT approach in terms of identifying and applying experience to a specific case. ‘I have always looked at these sheets, for example those from the morning when I had the late shift, and one day I came to the late shift and then they reported specifically of Mrs K who had again seizures, that she was very tired and that she did not eat, she had problems with swallowing, they reported that verbally and wrote it in the patient’s record. I look at this page [of the MIDOS tool] and everything ticked has been “none”.’ (C2/4)

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❛... the MIDOS tool helped to expand the participants’ awareness of other possibly distressing symptoms that might not have been identified in routine assessment.❜

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As she explained further, this led her to suspect that the MIDOS tool might have not been completed correctly for this particular resident.

Discussion Overall, the findings of the study support the use of the MIDOS tool to aid assessment and review of symptoms in patients with advanced dementia. Although positive perceptions about the use of the tool prevailed, there was disagreement in relation to the helpfulness of using rating scales, which is a central feature of the MIDOS tool. The absence of common assessment tools seems to lead to uncertainty when assessment is carried out using individual observation of the behaviour of the resident. Pain was perceived as a main factor in distress, but it was frequently difficult to delineate or differentiate pain from other complex symptoms. There would appear to be a lack of common language in describing symptoms. Symptoms are missed or misunderstood, and this reinforced expectations of the MIDOS tool, which focusses on a process to improve assessment and identification of symptoms. Improvements in assessment were reported in using the MIDOS tool as a continuous and clear means of documentation that has the potential to provide information at a glance. This contrasted with the reading of several, sometimes conflicting, reports when returning to the unit from leave or at shift change.

Personal competence in symptom management

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Uncertainty in interpreting distress or symptoms was a recurring issue in a majority of the interviews and was repeated from participants in all three of the units. Proper identification of symptoms is important to ensure the most appropriate delivery of good symptom management, particularly in a population with advanced dementia. Findings from Kaasalainen et al (2007) showed that uncertainty in professional carers may lead to underdiagnosis, as behavioural expression of pain might be thought to be associated more with psychiatric symptoms or dementia rather than with pain. This area of conflict was also identified by the participants in this study as they reported their own uncertainty in interpreting behaviour.

Challenges in symptom assessment One central concept of symptom assessment in patients with dementia is the concept of knowing the person (Casey et al, 2011). This concept was described by Parke (1998) as a basic concept of

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care for older people and, accordingly, might serve well as an instrument by which to gauge changes in behaviour. The crucial role of having a high level of competence in the management of dementia care was also reported by Blomquist and Hallberg (2001). Critically, this may be seen as both promoting and hindering the assessment of pain and other symptoms as it depends on the carer’s perception of characteristics demonstrated by residents as well as on their own personal empathy or the quality of the relationship between the resident and the carer.

Use of the MIDOS tool in the context of documentation

❛The ability to swiftly acquire a global overview of the progression of symptoms and response to treatment was mentioned as a good feature of the MIDOS tool.❜

Daily use of the MIDOS tool was considered a helpful factor both for the internal team communication in terms of providing a clear understanding of the progression of symptoms and for the detection of symptoms other than pain. It was important to the participants to be able to access information at a glance. Thus, the previous documentation of symptoms as part of a continuous text in the so-called report sheet was compared with documentation with the MIDOS tool. Participants reasoned that attending to documentation would help them to get an overview of the priorities for symptom management for residents. Therefore, a perceived benefit of using the MIDOS tool may be that its simplicity and clarity may contribute to time saving in the daily routine of documenting symptom presentation and management. It remains unclear how the MIDOS tool can contribute to a process of implementation of a common language for use in the management of symptoms in people with advanced dementia.

Conclusions drawn about the MIDOS tool in the context of this study In this study, the use of the MIDOS tool sensitised the participants to the perception of a range of symptoms they did not seem to take account of in the daily routine as the focus was mainly on pain and agitation. Overtly focussing on pain and agitation may mask other distressing symptoms that could be relieved by medical or non-medical interventions using a palliative care approach. From a palliative care point of view, therefore, the MIDOS tool may be useful for widening the focus of assessment in distressed residents. As older-person care in Germany will presumably have more contact with specialised palliative care teams in the future owing to article § 37 b SGB V (Bundesministerium der Justiz, 2007), a common strategy for documenting symptom assessment would be helpful. Findings

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from the study suggest that the MIDOS tool can be a positive addition to daily documentation in combination with existing specialised observation tools like the PAINAD tool. As the MIDOS tool is a part of the palliative care standard documentation in Germany, it seems that the overall benefit to the patient would suggest it is reasonable to implement the MIDOS tool in the area of older-person dementia care whenever a palliative care approach is used.

Limitations At a practical level, the period of using the MIDOS tool seemed to be too short, as residents did not present with complex untreated symptoms during the application phase. This did not mean that these residents did have not palliative care needs, but rather that symptoms appeared to be managed when assessed at the time of the study. Additionally, wider psychosocial and spiritual needs may have been overlooked or remained unaddressed because of the challenges of understanding the assessment of these areas. In some units it remained unclear from the transcripts whether the participants were sufficiently able to understand what was asked of them. However, this could be related to a lack of understanding of when a patient should be offered a palliative care approach, and so participants may not have identified residents for whom the MIDOS tool might be appropriate because they may have seen residents only as having dementia and not as having palliative care needs.

Future research opportunities As this has been a very small-scale study carried out in one country, replication in a wider group, possibly at multi-centre level, would be beneficial. Future research might consider how the MIDOS tool could be used in daily routine or the reasons why carers might decide to use it. A next step must be a validation study of the MIDOS tool in people with advanced dementia, potentially leading to wider implementation in the future.

Conclusions This study has shown that the trend of palliative care moving toward an inclusive approach beyond a cancer focus will be important for enhancing the quality of life of people with dementia. Palliative care as a discipline prides itself on the rigour with which assessment and attention to detail are applied in the management of complex clinical symptoms. The use of tools such as the MIDOS tool has the potential to

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enhance the quality of palliative care in dementia care. Although this study focussed on the German context, a deeper understanding of how such tools inform practice may have resonance with an international audience as they aim to strengthen links to the wider health care community through better service delivery. I● JPN Funding This study was conducted as part of a funded project from the Robert Bosch Foundation programme Palliative Care —Projects for the Elderly. Declaration of interests The authors have no conflicts of interest to declare. Basler H, Hüger D, Kunz R et al (2006) BEurteilung von Schmerzen bei Demenz (BESD). Der Schmerz 20(6): 519–26 Benner P (1984) From Novice to Expert: Excellence and Power in Clinical Nursing Practice. Addison Wesley, Menlo Park, CA Blomqvist K, Hallberg IR (2001) Recognising pain in older adults living in sheltered accommodation: the views of nurses and older adults. Int J Nurs Stud 38(3): 305–18 Bundesministerium der Justiz (2007) § 37b Spezialisierte ambulante Palliativversorgung. www.gesetze-im-internet. de/sgb_5/__37b.html (accessed 1 April 2014) Casey D, Murphy K, Ni Leime A et al (2011) Dying well: factors that influence the provision of good end-of-life care for older people in acute and long-stay care settings in Ireland. J Clin Nurs 20(13-14): 1824–33. doi: 10.1111/j.1365-2702.2010.03628.x Cormack D (1983) Psychiatric Nursing Described. Churchill Livingstone, Edinburgh Flanagan JC (1954) The critical incident technique. Psychol Bull 51(4): 327–58 Gläser J, Laudel G (2006) Experteninterviews und qualitative Inhaltsanalyse als Instrument rekonstruiernder Untersuchungen. Verlag für Sozialwissenschaften, Wiesbaden: 193 Hall S, Petkova H, Tsourous A, Costantini M, Higginson I, eds (2011) Palliative Care for Older People: Better Practices. World Health Organization, Copenhagen Kaasalainen S, Coker E, Dolovich L et al (2007) Pain management decision making among long-term care physicians and nurses. West J Nurs Res 29(5): 561–80 Lindena G, HOPE Koordinationsgruppe (2012) HOPE 2012: Darstellung des Projektes. https://www.hope-clara. de/download/HOPE2012Expose.pdf (accessed 1 April 2014) Morse J (1994) Designing funded qualitative research. In: Denzin N, Lincoln Y, eds. Handbook of Qualitative Research. Sage Publications, Thousand Oaks: 220–35 Norman IJ, Redfern SJ, Tomalin DA, Oliver S (1992) Developing Flanagan’s critical incident technique to elicit indicators of high and low quality nursing care from patients and their nurses. J Adv Nurs 17(5): 590–600 Parke B (1998) Gerontological nurses’ ways of knowing. Realizing the presence of pain in cognitively impaired older adults. J Gerontol Nurs 24(6): 21–8 Stiel S, Matthes ME, Bertram L, Ostgathe C, Elsner F, Radbruch L (2010) Validierung der neuen Fassung des Minimalen Dokumentationssystems (MIDOS2) für Patienten in der Palliativmedizin. Der Schmerz 24(6): 596–604. doi: 10.1007/s00482-010-0972-5 Yin RK (2003) Applications of Case Study Research. Sage Publications, Thousand Oaks Yin RK (2009) Case Study Research: Design and Methods. Sage Publications, Thousand Oaks

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❛Findings from the study suggest that the MIDOS tool can be a positive addition to daily documentation in combination with existing specialised observation tools ...❜

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Improving dementia care in nursing homes: experiences with a palliative care symptom-assessment tool (MIDOS).

In the past decade, the palliative care approach has been used in the care of frail older people living with debilitating chronic conditions, includin...
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