Effectiveness of the Liverpool care pathway for the dying in residential care homes: An exploratory, controlled before-and-after study

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1 588007PMJ / Palliative MedicineBrännström et al. research-article2015 Original Article Effectiveness of the Liverpool care pathway for the dying in residential care homes: An exploratory, controlled before-and-after study Palliative Medicine 2016, Vol. 30(1) The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalspermissions.nav DOI: / pmj.sagepub.com Margareta Brännström 1, Carl Johan Fürst 2, Carol Tishelman 3, Max Petzold 4 and Olav Lindqvist 3,5 Abstract Background: Clinical pathways aim to ensure that individuals receive appropriate evidence-based care and interventions, with the Liverpool Care Pathway for the Dying Patient focusing on end of life. However, controlled studies of the Liverpool Care Pathway for the Dying Patient, particularly outside of cancer settings, are lacking. Aim: To compare the effects of the Liverpool Care Pathway for the Dying Patient and usual care on patients symptom distress and well-being during the last days of life, in residential care homes. Design: Exploratory, controlled before-and-after study. During a 15-month baseline, usual care was carried out in two areas. During the following 15-months, usual care continued in the control area, while residential care home staff implemented Liverpool Care Pathway for the Dying Patient use in the intervention area. The intervention was evaluated by family members completing retrospective symptom assessments after the patient s death, using the Edmonton Symptom Assessment System and Views of Informal Carers Evaluation of Services. Settings/participants: Patients who died at all 19 residential care homes in one municipality in Sweden. Results: Shortness of breath (estimate = 2.46; 95% confidence interval = 4.43 to 0.49) and nausea (estimate = 1.83; 95% confidence interval = 3.12 to 0.54) were significantly reduced in Edmonton Symptom Assessment System in patients in the intervention compared to the control area. A statistically significant improvement in shortness of breath was also found on the Views of Informal Carers Evaluation of Services item (estimate = 0.47; 95% confidence interval = 0.85 to 0.08). Conclusion: When implemented with adequate staff training and support, the Liverpool Care Pathway for the Dying Patient may be a useful tool for providing end-of-life care of elderly people at the end of life in non-cancer settings. Keywords Clinical pathway, end-of-life care, homes for the aged What is already known about this topic? Symptom alleviation is a fundamental component in high-quality end-of-life care. Despite increased clinical use, systematic reviews show that empirical evidence is lacking regarding the effects of end-of-life care pathways. End-of-life care pathways are not always implemented adequately. 1 Department of Nursing, Umeå University Campus Skellefteå, Umeå, Sweden 2 The Institute for Palliative Care, Lund University and Region Skåne, Lund, Sweden 3 Medical Management Centre (MMC), Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden 4 Akademistatistik Centre for Applied Biostatistics, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden 5 Department of Nursing, Umeå University, Umeå, Sweden Corresponding author: Margareta Brännström, Department of Nursing, Umeå University Campus Skellefteå, S Umeå, Sweden. margareta.brannstrom@nurs.umu.se

2 Brännström et al. 55 What this paper adds? This exploratory study suggests that the use of the Liverpool Care Pathway for the Dying Patient (LCP) has potential to improve several aspects of the quality of end-of-life care for dying elderly people at residential care homes. Implications for practice, theory or policy The experiences gained during the process of conducting this exploratory study led to a policy decision to implement the LCP in end-of-life care in residential care homes in the study setting. When implemented with adequate staff training and support, the LCP may be a useful tool for providing end-of-life care of elderly people at the end of life in non-cancer settings. Introduction The plea for palliative care as a human right is unfortunately based on the suffering and distress of all-too-many dying patients and their families. 1 Despite the increasing evidence base for effective interventions to relieve pain and other symptoms at the end of life (EOL), the implementation of best practice care is still a challenge in most clinical settings. Integrated care pathways have been increasingly developed and used 2 as one means to achieve high-quality EOL care. The use of integrated care pathways based on best practice guidelines aims to ensure that the individual patient receives appropriate evidence-based care and interventions. The Liverpool Care Pathway for the Dying Patient (LCP) is one such structured tool for assessment and continual evaluation of the needs of the dying patient and family, aiming to transfer best practice care derived from hospice to other care settings. It includes strategies and decision-making support for identifying imminent death, providing pharmacological and non-pharmacological symptom control and support for communication with patients and families. 3 However, there is a scarcity of research on the effect of clinical pathways in general and of EOL care pathways specifically. 4 The LCP has been the subject of recent debate and evaluation, 5 particularly after the Neuberger report from the UK Department of Health. 6 Although the report appreciates the positive effects of using LCP as it is intended, the authors criticize what they cite as inappropriate implementation of LCP, with many of the cited cases of malpractice in older non-cancer patients. Therefore, they recommend that LCP use be phased out in the United Kingdom. The report also emphasizes that robust scientific evidence for the effectiveness of LCP use is still lacking. 6 Uncontrolled before-and-after studies 7,8 and qualitative research 9 13 support the value of using LCP in some types of services providing care for dying patients. Although much of this research focuses on patients with cancer, one exception is a recent qualitative mixed methods study of staff perceptions which found that LCP was described as supporting, guiding and promoting care delivery in residential care for the elderly in New Zealand. 14 However, a recent cluster randomized trial did not show a significant difference in the primary outcome overall quality of care for patients with cancer in hospitals. A significant improvement for the secondary outcomes of respect, kindness and dignity in care provision was observed, and an improvement in control of breathlessness was also noted. 15 To the best of our knowledge, most studies on LCP to date have been carried out in hospital and hospice settings, with a lack of clarity as to whether findings can be generalized to other EOL care settings. In summary, the LCP research to date shows a need for more robustly designed (i.e. randomized and controlled before and after) studies in noncancer and non-hospital settings (i.e. residential care homes (RCHs)). 15 The aim of this exploratory study was to begin to address these knowledge gaps, by comparing the effects of LCP and standard care on symptom distress and well-being during the last days of life in RCHs. Methods Study design This exploratory controlled before-and-after study included all 19 RCHs with approximately 1000 residents in one Swedish municipality. All elderly people (called patients hereafter for simplicity) who died at an RCH between 1 June 2009 and 31 October 2011 were included in the study population. Context The municipality where the study was conducted is situated in the north of Sweden. The total population of approximately 72,000 inhabitants is spread over 6800 km 2 in both urban and rural areas. 16 Patients in RCHs are generally older with dementia diseases, multiple diseases and/or extensive disabilities. RCH staff consists primarily of assistant nurses with most responsibility for hands-on care and registered nurses (RNs) on a consultative basis, both employed by the municipality. General practitioners (GPs) are employed by the county council as consultants

3 56 Palliative Medicine 30(1) to assess patient s status, make diagnoses and prescribe medications. Intervention All RCHs were organized under one of two equally large administrative areas (see Figure 1); one area included 10 RCHs with a total of 511 beds, and the other area had 9 RCHs with 506 beds. To avoid contamination between areas, one administrative area was randomly allocated to the LCP intervention and the other to control. During a 15-month baseline (1 June 2009 to 31 August 2010), usual care (UC) was carried out in both areas. In the following 14-month (1 September 2010 to 31 October 2011), UC continued in the control area (CA), while RCH staff introduced and used the LCP according to its guidelines in the intervention area (IA). This study was conducted during a of ongoing development to improve EOL care in the municipality. This included the introduction of the Swedish Palliative Registry 17 and a h course in EOL care for all staff working in RCHs in the municipality during baseline in both areas, unrelated to this study. One contact RN was appointed at each RCH in both areas. The contact nurse was responsible for registering all patients who died in research protocols; this included information about the family member(s) usually present during the last days of life. The project principal investigator (PI; first author M.B.), the chief nurse for the municipality and the RN responsible for care development held hour-long meetings every third month with the contact nurses to reflect on issues about EOL care; these were held separately for the IA and CA. The Swedish LCP version 11 was introduced in the IA in collaboration with the Swedish LCP coordination centre according to standard criteria at the end of the baseline. This included a 3-h session about the LCP and EOL care for all assistant nurses, RNs and GPs working at the RCHs in the IA. The IA contact nurses participated in an approximately 35-h web-based LCP train-the-trainer course during March April Each contact nurse then taught staff at their respective workplace and acted as a resource person for LCP implementation. Evaluation and outcomes To evaluate the intervention, a set of questionnaires was sent to a family member who had been in close contact with the dying patient, as determined from research protocol data, 1 month after the death of the patient. No reminder was sent out. Inclusion of family members to the evaluation ended somewhat earlier than planned, on 31 October 2011, due to organizational changes involving overlap of administrative areas which could increase risk of contamination. The individual items evaluating symptom distress and well-being of patients, as rated by family members after the death of the patient and measured by the Edmonton Symptom Assessment System (ESAS), comprise the primary endpoints. In this study, we also analysed the symptoms pain and breathlessness during the last 3 days of life using the Views of Informal Carers Evaluation of Services (VOICES) questionnaire. The ESAS was used to measure symptom burden during the last 3 days in life, assessing nine commonly experienced symptoms, that is, pain, tiredness, nausea, depression, anxiety, drowsiness, loss of appetite, deteriorated well-being and shortness of breath. A further item allows assessment of Any other problem. The severity of each symptom at the time of assessment is rated on a 10-step numerical scale, with higher scores indicating greater symptom intensity. 18,19 In the analyses presented here, the symptoms pain and breathlessness during the last 3 days of life were further assessed using the VOICES questionnaire. VOICES is intended to retrospectively assess the quality of palliative and EOL care from the perspective of the bereaved person. 20 Medical records and the National Board of Health and Welfare statistics on causes of death in Sweden were used to collect data about background characteristics. The cause of death for the deceased is classified according to International Statistical Classification of Diseases and Related Health Problems Tenth Revision (ICD-10). 21 Statistical analysis Descriptive statistics and linear regression analysis have been used. Comparisons between the IA and CA were made using the chi-square test for proportions and Student s t-test for continuous variables. In the regression analyses, the unit of analysis was the RCH for which proportions or mean values were calculated and then used for comparison. The effect of the intervention was extracted as an interaction effect of being an intervention unit and post-intervention, after excluding patients in the IA who were not on LCP during the intervention. This corresponds to calculating the difference between the changes from baseline to follow-up for intervention units and control units, respectively. A p-value < 0.05 was considered to indicate a statistically significant difference. Statistical Package Social Sciences (SPSS) version 20.0 was used. Ethical approval The Regional Ethics Committee for Human Research at Umeå University (reference number M) reviewed and gave permission for the study to be conducted with this design. Written information was provided and consent obtained from relatives prior to their participation.

4 Brännström et al. 57 All residential care homes (RCH) in the municipality n=19 (Total n=1017 beds) Stratification into 2 areas: 10 RCH/511 beds vs. 9 RCH/506 beds Randomization of areasto intervention area vs. control area Intervention area usual care Control area usual care 01/06/09 31/08/10 Allocated to n=237 deceased (23.7per RCH in area [9-44]) n=176 deceased (19.6per RCH in area [9-45]) Excluded Died in other setting: n=41 Died in other setting: n=33 Eligibility n=196 deceased (19.6 per RCH in area [8-37]) Attrition Contact information missing: n=1 Administration failure: n=37 Questionnaires sent to relatives No answer Analyzed questionnaires n=158 (15.8per RCH in area [5-31]) n=94 (9.4 per RCH in area [3-17]) n=64 (response rate: 40.5%) (6.4 per RCH in area [1-17]) n=143 deceased (15.9 per RCH in area [9-36]) Contact information missing: n=1 Administration failure: n=16 n=126 (14.0per RCH in area [8-28]) n=65 (7.2 per RCH in area [2-16]) n=61 (response rate: 48.4%) (7.25per RCH in area [3-12]) Intervention Intervention area LCP intervention Control area usual care 01/09/10 31/10/11 Allocated to n=220 deceased (22.0per RCH in area [10-40]) n=204deceased (22.7per RCH in area [2-73]) Excluded Died in other setting: n=21 Died in other setting: n=24 Eligibility n=199 deceased (19.9per RCH in area [5-36]) Attrition Contact information missing: n=2 Administration failure: n=3 Not on LCP: n=67 Questionnaires sent to relatives n=127 (12.7per RCH in area [4-28]) n=180deceased (20.0per RCH in area [2-63]) Contact information missing: n=3 Administration failure: n=25 n=152 (16.9per RCH in area [1-57]) No answer n=56 n=88 Analyzed questionnaires n=71 (response rate: 55.9%) (7.1 per RCH in area [1-22]) n=64 (response rate: 42.1%) (8.0 per RCH in area [1-23]) Figure 1. Flow diagram of study.

5 58 Palliative Medicine 30(1) Table 1. Total RCH population in the municipality who died in baseline and intervention (1 June October 2011; N = 837). Total Intervention area Control area p-value n % n % n % Gender Female a Male Total Age (years) Mean b Median Range Cause of death, Diseases of the circulatory a underlying (ICD-10) system (I00 I99) Diseases of the nervous a system (G00 G99) Mental and behavioural <0.001 a disorders (F00 F99) Neoplasms (C00 D48) <0.001 a Certain infectious and a parasitic diseases (A00 B99) Diseases of the respiratory a system (J00 J99) External causes of morbidity a and mortality (V01 Y98) Other c a Missing Total Dementia as underlying or one of multiple causes of death d <0.001 a RCH: residential care home; ICD-10: International Statistical Classification of Diseases and Related Health Problems Tenth Revision. a Chi-square test. b Student s t-test. c ICD-10: D50 D89, E00 E90, K00 K93, M00 M99, N00 N99, R00 R99. d Including ICD-10 codes: F00 F03, G30 G31. Results This study was conducted between 1 June 2009 and 31 October Characteristics of patients who died in RCHs during the study are presented in Table 1. In total, 837 patients (mean age approximately 86 years) died during the study, with a majority of women. The most common underlying cause of death 21 was a disease of the circulatory system. A majority of the patients had dementia as either primary or one of multiple causes of death (Tables 1 and 2). A flow diagram of the study is presented in Figure 1. During the baseline, 413 patients died and 424 died during the intervention. A total of 14% of patients died in settings other than a RCH and were therefore excluded from the analyses, with 96% of these deaths occurring in an acute care hospital. As noted above, we also excluded patients in the IA during the intervention who were not on LCP (n = 67). The LCP was completed for 132 (60%) of the 220 patients who died in the IA. The patients were on LCP for an average of 67 h (1 336 h). Four patients were on LCP twice. The LCP was not initiated for 88 patients (40%) with reasons given as sudden death (n = 38), dying in hospital (n = 20), GP not wanting to start LCP (n = 5), lack of time (n = 5), off-hours for GP (n = 4), slow deterioration lasting more than 1 year (n = 2), relatives opposition to LCP (n = 2), other reasons (n = 3), unknown reasons (n = 1) and missing data (n = 8). The total response rate for the questionnaires sent to family members was 46.2% (Figure 1). There was a statistically significant difference in returned questionnaires during the intervention, with a higher response rate in the IA, compared to the CA (p < 0.05). As shown in Table 3, the respondents were most often a child of the deceased, female and between 60 and 69 years. While six of nine items assessing symptoms on ESAS changed in the direction of alleviation in the IA, this was not the case in the CA (Figure 2) with more symptoms showing a tendency to worsen or remain stable. The change between baseline and follow-up on ESAS was statistically significant for assessments of nausea and shortness of

6 Brännström et al. 59 Table 2. Characteristics of patients. Patients Intervention area (n = 135) Control area (n = 125) (n = 64) Intervention (n = 71) (n = 61) Intervention (n = 64) n % n % n % n % Gender Women Men Age (years) Mean Median Range Cause of death, Diseases of the circulatory underlying (ICD-10) system (I00 I99) Diseases of the nervous system (G00 G99) Mental and behavioural disorders (F00 F99) Neoplasms (C00 D48) Certain infectious and parasitic diseases (A00 B99) Diseases of the respiratory system (J00 J99) External causes of morbidity and mortality (V01 Y98) Other a Dementia as underlying or one of multiple causes of death b ICD-10: International Statistical Classification of Diseases and Related Health Problems Tenth Revision. a ICD-10: E00 E90, K00 K93, M00 M99, N00 N99, R00 R99. b Including ICD-10: F00 F03, G30 G31. Table 3. Characteristics of respondents. Respondents Intervention area (n = 135) Control area (n = 125) (n = 64) Intervention (n = 71) (n = 61) Intervention (n = 64) n % n % n % n % Gender Women Men Age (years) Missing Relation to the deceased Wife/partner Son/daughter Brother/sister Son-in-law/ daughter-in-law Other relative Friend Other

7 60 Palliative Medicine 30(1) Figure 2. Level of change before and after in ESAS items for intervention area (IA) and control area (CA). breath in the IA as shown in Table 4 and Figure 2. The symptoms which deviated from this pattern were fatigue and sleepiness, which might represent side effects of increased pharmacological treatment of other symptoms. A statistically significant improvement in breathlessness was also found on the VOICES items in the IA, although this was not the case for VOICES items related to pain, as seen in Table 5. Discussion This exploratory study found that, based on family members assessments, symptom burden related to nausea and difficulties in breathing was significantly lower for dying patients in RCHs using LCP as compared to RCHs providing standard care without using the LCP. To our knowledge, this is the first controlled before-and-after study to test the effectiveness of the LCP for the improvement of EOL care for elderly people dying in RCHs, settings in which cardiovascular disease and dementia rather than cancer were the most common causes of death. Investigating family members ratings of symptoms close to death was one pragmatic choice in a situation in which it is neither ethically nor practically feasible to collect participants self-reports. While it has been determined that proxy ratings from family members are a reasonable substitute to those of the dying person himself or herself, 22 family members have a unique perspective of their own. 23 This perspective has consistently been the subject of this evaluation. In this study, statistically significant improvements in assessments of nausea and shortness of breath between baseline and follow-up were found on these ESAS items in the IA but not in the CA. There was a tendency in a positive direction in assessments of pain, well-being and depression that might imply improvements, although these were not statistically significant in this sample. Statistically significant improvement in breathlessness was also found in the IA on the VOICES items, although this was not the case for VOICES items related to pain. The primary outcomes are difficult to compare with other robustly designed studies of LCP as assessment of symptom distress has rarely been applied as a primary outcome variable, even in cancer settings. The results from Costantini et al. 15 are most readily comparable with our data, although they derive from hospitalized patients with cancer and symptoms were not investigated as primary outcomes; the only symptom outcome showing improvement in their study was breathlessness, while they found no significant difference in pain or nausea/vomiting. In EOL settings, it is doubtful that such results indicate a decrease in symptomatology; improvements instead suggest better symptom alleviation or control. A number of caveats should, however, be considered when interpreting these results of this exploratory study. The lack of prior research meant that pre-specified, evidence-based hypotheses about the potential effects of the LCP on specific symptoms could not be formulated. The exploratory nature of our analyses, using the individual items on ESAS as primary outcomes, then precluded power analysis. It should further be noted that the study was carried out in one community due to practical limitations which constrained the sample size possible. Another pragmatic choice is in the possibly controversial decision to use a per-protocol rather than intention -to-treat analysis, although it should be recognized that

8 Brännström et al. 61 Table 4. ESAS symptom assessment. Mean values (SD) Linear regression Intervention area Control area Estimate 95% LCP intervention LCP intervention Confidence interval p-value Shortness of breath* 4.86 (0.96) 3.09 (1.93) 4.29 (1.09) 4.98 (1.53) Nausea* 2.72 (1.22) 1.09 (0.68) 1.85 (0.81) 2.04 (0.85) Deteriorated well-being 4.66 (2.13) 2.86 (1.74) 5.80 (0.77) 5.39 (0.97) Depression 2.95 (1.28) 1.78 (1.39) 3.36 (1.32) 3.29 (1.38) Pain 3.28 (1.34) 2.44 (1.18) 3.45 (0.93) 3.70 (1.08) Anxiety 2.59 (1.54) 1.84 (1.54) 3.46 (0.83) 3.44 (1.63) Loss of appetite 8.03 (0.71) 8.23 (0.87) 7.23 (0.72) 6.75 (1.55) Drowsiness 7.30 (0.72) 7.60 (0.74) 6.82 (0.53) 6.57 (1.09) Tiredness 7.12 (0.94) 7.67 (0.76) 6.86 (0.39) 7.09 (1.02) ESAS: Edmonton Symptom Assessment System; SD: standard deviation; LCP: Liverpool Care Pathway for the Dying Patient; RCH: residential care home. In the analyses, the unit was the RCH for which proportions or mean values were calculated and then used for comparison. Estimate is the difference in change between intervention and control units. *Statistical significance, p-value < Table 5. Symptom items derived from VOICES (questions F10 F17). Mean values Linear regression Intervention area Control area Estimate a 95% LCP intervention LCP intervention Confidence interval Did she or he have any pain in her or his last 3 days of life? Yes Do you think that it distressed or bothered her or him? Yes Did she or he have any treatment for her or his pain? Yes Did the treatment relieve her or his pain? Yes (completely all of the time/ completely some of the time) Did she or he have any breathlessness in her or his last 3 days of life? Yes * Do you think his breathlessness distressed or bothered her or him? Yes Did she or he have any treatment for her or his breathlessness? Yes Did the treatment relieve her or his breathlessness? Yes (completely all of the time/ completely some of the time) VOICES: Views of Informal Carers Evaluation of Services; LCP: Liverpool Care Pathway for the Dying Patient. a Estimate is the difference in change between intervention and control units. *Statistical significant, p-value < p-value this is a before-and-after design and not a randomized controlled trial. We motivate this with our clinical knowledge and expectations that the LCP is not appropriate or possible for all dying patients. Two-thirds of the patients in the IA who were not on LCP either died suddenly in a RCH or died in hospital; in neither case would LCP be a possibility within the framework of this study. Even other palliative care researchers discuss challenges which mean

9 62 Palliative Medicine 30(1) that intention to treat is not always a self-evident alternative. 24,25 These challenges are exacerbated here by the community setting for the study; as noted above, we were unable to continue data collection for increased power without risk of contamination. However, it is possible that this design may have introduced a bias that we are unable to correct for, and which risks overestimation of the effects of the intervention at worst, and in any case, may obscure interpretation of the results. Therefore, we have made efforts to describe the implementation process and data clearly, given the strengths and weaknesses of a setting in many ways beyond experimental control, but reflecting real-life challenges and possibilities. Research on dying people and complex interventions affecting primary care (PC) delivery in clinical settings is important but generally methodologically challenging. 5 Cochrane also points out that well-designed controlled studies are needed to evaluate the use of EOL care pathways. 4 The strengths of our study include the relatively large sample size as well as the comparison of the IA with a control. As randomization on the RCH level would risk contamination between areas, we randomly assigned the two organizational areas consisting of a total population of RCHs in the municipality to the IA or CA. 26 Furthermore, the ongoing development process regarding palliative care in the whole municipality during the study suggests that the differences between areas shown here were related to the implementation of the LCP. In addition, we have included the implementation from onset in analysis, without a training for LCP use. This may have weakened the demonstrated effects of the LCP intervention, due to the lack of experience in initially using the LCP in daily clinical practice. While a first training before data collection might have strengthened the positive effects found, it would instead have decreased power. Given that research involving palliative and EOL care patients is generally prone to high rates of attrition 24 unrelated to study design, the response rate of slightly over 46% of questionnaires can be seen as acceptable. It is also interesting that while response rates between areas did not differ at baseline, there was a statistically significant difference after the intervention, with a greater proportion of responses from the IA. One might consider whether this difference is also an indirect result of differences in care provision with LCP compared with standard care. As noted above, factors underlying our results are not self-evident and several factors may be inter-related. However, as pointed out in the Neuberger report, 6 the purposeful strategy applied in the process of implementing the LCP may well have contributed to positive outcomes. A rapid evidence review 5 also pointed out that moderate research evidence indicates that care pathways for the dying phase are not always implemented adequately. McConnell et al. 27 found that the implementation process for the LCP recommended by the developers (i.e. a dedicated facilitator, education and training, audit and feedback) is necessary but not sufficient in itself to ensure successful implementation. For example, support from senior management was also said to be vital to consider during implementation; 27 in this study, this was assured through regular meetings between M.B., contact nurses and senior managers during the intervention. These meetings might also have contributed to minimize variability in the implementation of the LCP among the 10 RCHs in the IA. Four patients were put on the LCP but then taken off the pathway, to be put on it again at a later time. This indicates a degree of flexibility in the use of the LCP in this study. Adequate prediction of imminent dying is a key component of appropriate LCP use; this finding is important to emphasize in light of the Neuberger report s criticisms of the risks with LCP use. 6 However, further research to improve the diagnosis of imminent dying, that is, dying within days or hours, remains necessary. 5,6 Despite the limitations of the study discussed above, it has nonetheless had substantial effect, in that based on the positive experiences in conducting the study rather than on the substantive outcomes alone, a policy decision has been made by the municipality to implement use of the LCP in all RCHs in the area. This, along with our results on possible effects on symptom burden, suggests that the LCP, when implemented with adequate training and careful follow-up, can be a useful tool for EOL care for elderly residents in this non-cancer RCH setting. Acknowledgements We are grateful to the participants for taking part in this study. We would like to thank Sara Runesdotter, statistician, for valuable support with statistical analysis. Declaration of conflicting interests The authors declare that there is no conflict of interest. Funding This work was supported by the Strategic Research Program in Health Care Sciences (SFO-V), Bridging Research and Practice for Better Health, Sweden ; Äldrecentrum Västerbotten; Rönnbäret Fund; Skellefteå municipality; and the Umeå University Fund. References 1. Radbruch L, de Lima L, Lohmann D, et al. The Prague Charter: urging governments to relieve suffering and ensure the right to palliative care. Palliat Med 2013; 27: Boyd K and Murray S. Using end of life care pathways for the last hours or days of life. BMJ 2012; 345: e Ellershaw J and Wilkinson S. Care of the dying: a pathway to excellence, 2nd ed. Oxford: Oxford University Press, 2011, 288 pp.

10 Brännström et al Chan R and Webster J. End-of-life care pathways for improving outcomes in caring for the dying. Cochrane Database Syst Rev 2010; 1: CD Parry R, Seymour J, Whittaker B, et al. Rapid evidence review: pathways focused on the dying phase in end of life care and their key components. Nottingham: Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, 2013, 35 pp. 6. Department of Health. More care, less pathway. A review of the Liverpool Care Pathway, Liverpool_Care_Pathway.pdf (2013, accessed 30 December 2014). 7. Veerbeek L, van Zuylen L, Swart SJ, et al. The effect of the Liverpool Care Pathway for the dying: a multi-centre study. Palliat Med 2008; 22: Veerbeek L, van der Heide A, de Vogel-Voogt E, et al. Using the LCP: bereaved relatives assessments of communication and bereavement. Am J Hosp Palliat Care 2008; 25: Clark JB, Sheward K, Marshall B, et al. Staff perceptions of end-of-life care following implementation of the Liverpool care pathway for the dying patient in the acute care setting: a New Zealand perspective. J Palliat Med 2012; 15: Freemantle A and Seymour J. Why is the Liverpool care pathway used for some dying cancer patients and not others? Healthcare professionals perspectives. BMC Res Notes 2012; 5: O Hara T. Nurses views on using the Liverpool care pathway in an acute hospital setting. Int J Palliat Nurs 2011; 17: Gambles M, Stirzaker S, Jack BA, et al. The Liverpool Care Pathway in hospices: an exploratory study of doctor and nurse perceptions. Int J Palliat Nurs 2006; 12: Jack BA, Gambles M, Murphy D, et al. Nurses perceptions of the Liverpool Care Pathway for the dying patient in the acute hospital setting. Int J Palliat Nurs 2003; 9: Clark J, Marshall B, Sheward K, et al. Staff perceptions of the impact of the Liverpool Care Pathway in aged residential care in New Zealand. Int J Palliat Nurs 2012; 18: Costantini M, Romoli V, Leo SD, et al. Liverpool Care Pathway for patients with cancer in hospital: a cluster randomised trial. Lancet 2014; 18: SCB Statistics Sweden, (accessed 30 December 2014). 17. Lundström S, Axelsson B, Heedman PA, et al. Developing a national quality register in end-of-life care: the Swedish experience. Palliat Med 2012; 26: Bruera E, Kuehn N, Miller MJ, et al. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 1991; 7: Chang VT, Hwang SS and Feuerman M. Validation of the Edmonton Symptom Assessment Scale. Cancer 2000; 88: Addington-Hall J and McPherson C. After-death interviews with surrogates/bereaved family members: some issues of validity. J Pain Symptom Manage 2001; 22: World Health Organization. International Classification of Diseases (ICD), (accessed 30 December 2014). 22. Kutner JS, Bryant LL, Beaty BL, et al. Symptom distress and quality-of-life assessment at the end of life: the role of proxy response. J Pain Symptom Manage 2006; 32: Broberger E, Tishelman C and von Essen L. Discrepancies and similarities in how patients with lung cancer and their professional and family caregivers assess symptom occurrence and symptom distress. J Pain Symptom Manage 2005; 29: Preston NJ, Fayers P, Walters SJ, et al. Recommendations for managing missing data, attrition and response shift in palliative and end-of-life care research: part of the MORECare research method guidance on statistical issues. Palliat Med 2013; 27: Grande GE and Todd CJ. Why are trials in palliative care so difficult? Palliat Med 2000; 14: Costantini M, Di Leo S and Beccaro M. Methodological issues in a before-after study design to evaluate the Liverpool Care Pathway for the Dying Patient in hospital. Palliat Med 2011; 25: McConnell T, O Halloran P, Porter S, et al. Systematic realist review of key factors affecting the successful implementation and sustainability of the Liverpool care pathway for the dying patient. Worldviews Evid Based Nurs 2013; 10:

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