Equal palliative care for patients with COPD? A nationwide register study ARTICLE Equal palliative care for patients with COPD? A nationwide register study Ingela Henocha,b , Peter Strangc,d, Claes-G€oran L€ofdahle,f and Ann Ekberg-Janssong,h aDepartment of Research and Development, Angered Local Hospital, Gothenburg, Sweden; bThe Sahlgrenska Academy, Institute of Health and Care Sciences, University of Gothenburg, Sweden; cDepartment of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden; dStockholms Sjukhem Foundation�s Research and development unit, Stockholm, Sweden; eUniversity of Lund, Sweden; fCOPD Center, Institute of Medicine, Sahlgrenska University Hospital, University of Gothenburg, Sweden; gDepartment of Research and Development, Region Halland, Sweden; hThe Sahlgrenska Academy, Institute of Medicine, University of Gothenburg, Sweden ABSTRACT Background: Although chronic obstructive pulmonary disease (COPD) is a life-limiting disease with a significant symptom burden, the patients are more often referred to nursing homes (NH), than to spe- cialist palliative care (SPC) at the end of life (EOL). This study aimed to compare patients with COPD in SPC with those in NH and to compare the care provided. Methods: A national register study was carried out where the Swedish National Airway Register and the Swedish Register of Palliative Care were merged. COPD patients who died in NHs or short-term facilities were included in the NH group (n ¼ 415) and those who died in SPC were included in the SPC group (n ¼ 355). Demographic and clinical variables were included from the Swedish National Airway Register and variables concerning EOL care from the Swedish Register of Palliative Care. Results: Symptom prevalence was similar in NHs and SPC, but symptom assessment (32% vs 20%), symptom relief medication (93-98% in SPC vs 74-90% in NH), EOL discussions (88% vs 66%), and bereavement support (94% vs 67%) were more likely in SPC (in all comparisons p < 0.001). Younger age and co-habiting increased the probability of dying in SPC (p < 0.001). Conclusion: Despite similar symptom prevalence, older persons are more likely to be referred to NHs. If applying a palliative care philosophy in NHs, routine symptom assessment and prescription of rescue medication for frequent symptoms, would be more likely. Promoting advance care planning and EOL discussions at an earlier stage would result in more prepared patients and families. ARTICLE HISTORY Received 12 December 2018 Revised 22 January 2019 Accepted 19 February 2019 KEYWORDS Palliative care; chronic obstructive pulmonary disease; symptoms; advance care planning; register study Introduction Chronic Obstructive Pulmonary Disease (COPD), a progressive and life-limiting disease, is predicted to be the third-leading cause of death by the year of 2020, globally (1). Despite troublesome symptoms in advanced stages, COPD still receives considerably less attention in specialized palliative care (SPC) services, than does cancer (2,3). Prominent symptoms in COPD include an increasing num- ber of exacerbations with pneumonia (4), anxiety (5), and depression (4,6), which is associated with impaired prognosis (7). The patients also exhibit increasing dyspnea, partly due to respiratory failure (4,8–10), decreased exercise capacity (4), low BMI (8), dry mouth (10), cough (10), sleep problems (10), and pain (10). Moreover, COPD patients are often affected by comorbidities (11), such as heart failure, thrombo-embolic epi- sodes, osteoporosis and renal failure. In COPD, physical symptoms and psychological wellbeing interact, as breathlessness and anxiety often appear in a cycle; breathlessness triggers anxiety, and anxiety triggers breathlessness (12). Pharmacologic respiratory treatment of the disease can positively influence severe dyspnea, and, in the most severe cases, when combined with opioids, can decrease breathlessness (13,14). Severe COPD also has psy- chological, social and existential consequences, such as social isolation, loss of hope, and a struggle to maintain meaning in life (12). In a review, HRQoL in palliative care patients was related to symptom burden and health care issues, but also to cog- nitive, emotional, social, and spiritual aspects, and to issues about personal autonomy, and preparedness (15). Most of these aspects are highly relevant to patients with COPD and their families. The latter aspects, i.e., awareness and pre- paredness, are central to palliative and end of life (EOL) care. However, there are several barriers to promoting these. In a survey of respiratory physicians, only one-third regularly dis- cussed palliative care issues with their patients (16). Given the gradual progression and the prognostic uncertainty of these individuals (17), health care professionals might be unaware of the patient with COPD being in the palliative phase, which may result in limited planning and provision of palliative care (18). The consequences of this non-awareness CONTACT Ingela Henoch ingela.henoch@gu.se Sahlgrenska Academy at the University of Gothenburg, Institute of Health and Care Sciences, Box 457, SE- 405 30 Gothenburg, Sweden � 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. UPSALA JOURNAL OF MEDICAL SCIENCES 2019, VOL. 124, NO. 2, 140–147 https://doi.org/10.1080/03009734.2019.1586803 http://crossmark.crossref.org/dialog/?doi=10.1080/03009734.2019.1586803&domain=pdf&date_stamp=2019-05-31 http://orcid.org/0000-0002-1987-5419 http://creativecommons.org/licenses/by/4.0/ https://doi.org./10.1080/03009734.2019.1586803 http://www.tandfonline.com and organizational barriers, may result in a reluctance to ini- tiate EOL discussions or advance care planning (18). As COPD is a life-limiting disease, associated with a signifi- cant symptom burden and comorbidities, these patients should be considered as candidates for specialist palliative care (SPC) at the EOL, as SPC home care and in-patient care units have special attention on symptom control, as well as on psychosocial and existential support to patients and their families. In Sweden, SPC is provided by palliative home care teams or by palliative in-patient care units. Palliative home care teams often co-operate with hospitals which provide disease-modifying treatments whereas the home care team is responsible for symptom control, support, management of nutrition, follow-up visits and so on. Typically, the length of care is for some months. The palliative in-patient care facili- ties are mainly used in the dying phase for the last 2–3 weeks of life. Obviously, SPC units are experts on symp- tom control and support. Still, we know that a considerable number of COPD patients are referred to nursing homes. For the above reasons, the aim of this research was to compare patients diagnosed with COPD treated in specialized pallia- tive care with those in nursing homes, regarding the follow- ing research questions: � What are the characteristics of patients diagnosed with COPD who received specialized palliative care compared to patients cared for in nursing homes? � What are the characteristics of the care provided to patients diagnosed with COPD in specialized palliative care and in nursing homes? � Is the provided care equal in quality and equity - regard- less of place of care? � What predicts health care admission to specialized pallia- tive care or nursing home care in the EOL care of patients with COPD? Methods This is a register study including two national quality regis- ters, the Swedish National Airway Register and Swedish Register of Palliative Care (SRPC). The Swedish National Airway Register is a register of patients diagnosed with either COPD or asthma, where registrations of each patient visit were made by healthcare professionals in out-patient units, mostly primary healthcare and only a minority, 14%, in speci- alized pulmonary clinics. Registrations concerned demo- graphic, clinical, and patient-reported variables. In the present study, the last registrations were identified. In the SRPC, healthcare professionals at the unit where the patients had died made registrations of demographic and clinical characteristics of the patients, place of death, and some char- acteristics of the EOL care, and symptoms in the last week of life. Sample An extract from the Swedish National Airway Register was obtained in 2016 and a total of 20 668 patients diagnosed with COPD were identified, with each attending at least one visit. Of these, deceased patients were identified through the Swedish Tax Agency, and we found 3113 patients who had died. The identities of the deceased patients were cross- referenced with the identities of patients in the SRPC and 1842 of the deceased patients were also found there. The two databases were then merged. The patients whose place of death was a nursing home (n ¼ 279) or short-term service for older people (n ¼ 136) were identified and merged to one group called the “nursing home group” (n ¼ 415). The patients who died in specialized in-patient pal- liative care (n ¼ 252) or in their homes with support from specialized palliative home health care (n ¼ 103) were merged to one group called the “specialized palliative care group” (n ¼ 355). Variables The variables from the Swedish National Airway Register related to demographic characteristics, i.e., age, gender, and social situation. Clinical characteristics related to stage of COPD according to the GOLD stages (1), number of exacer- bations the last 12 months, number of hospitalizations due to COPD in the last 12 months, FEV1% of predicted value, comorbidities, and exercise capacity, measured by the num- ber of days per week that the patient had been physically active. Patient-reported variables comprised smoking habits, divided into non-smokers, ex-smokers, and still smokers. Dyspnea was measured by the Modified Medical Research Council (mMRC) dyspnea scale (19), which is a patient-rated, single-item scale where severity of the dyspnea experience is reported, ranging from 0, corresponding to “Not troubled by breathlessness except on strenuous exercise”, to 4, corre- sponding to “breathless when dressing or undressing”. HRQoL was measured by the Clinical COPD Questionnaire (CCQ) (20), a patient-rated questionnaire with ten items, measuring dyspnea at rest, dyspnea during physical activ- ities, cough, phlegm, how concerned the patient is about the dyspnea; and how the dyspnea had limited the patient’s activities, i.e., strenuous physical activities, moderate physical activities, daily activities, and social activities. All items are scored by the patient from 0, “never”, to 6, which corre- sponds with “almost all the time”. A mean score of 4.0–6.0 is interpreted as a large or very large impact on HRQOL; 2.0–3.9 corresponds with moderate impact on HRQOL, and 0.0–1.9, no or small impact on HRQOL. Minimal clinical important difference in the CCQ was found to be 0.4 (21). In later registrations, health status was measured by the COPD Assessment Test (CAT) (22). The CAT consists of eight items relating to cough, phlegm, pressure on chest, dyspnea on exertion, limitations in performing activities, risks due to lung condition, sleep quality, and level of energy. All items are scored by the patients from 0, “without problems”, to 5, which corresponds with “severe problems”. All scores of the items are added together to obtain a single score ranging from 0 to 40. From the SRPC, the following variables were retrieved: whether death was expected; whether the patient was able UPSALA JOURNAL OF MEDICAL SCIENCES 141 to express his/her wishes the last part of life; whether the place of death was preferred by the patient; whether anyone was present at death; and whether there had been any EoL discussion about the impending death with either the patient or the family; whether the family was invited to par- ticipate in the after-death dialogue; and whether members of other professions were consulted. Data about symptoms during the latter part of life were also retrieved, such as pres- ence of pressure ulcers, symptom assessments, symptoms prevalence during the last week of life, assessments made, prescribed medications, and data on whether the symptom was alleviated. The following symptoms: pain, rattle, nausea, anxiety, dyspnea, and delirium, were registered. Data analysis Descriptive statistics were used for describing the sample and their registered treatments, with mean values and stand- ard deviations (SD) calculated for continuous variables and numbers and percentages of the total sample for categorical variables. T-test was used to make comparisons between continuous variables. Relationships between dichotomous categorical experience and treatment variables and age, gen- der, and social situation were analyzed with the Mantel- Haenszel Chi-square test. In order to explore predictors of place of death, we per- formed bivariate logistic regression analyses with a depend- ent variable with nursing homes as place of death scored as 0 and specialized palliative care as place of death scored as 1. Independent variables were: age; gender; social situation; FEV1% of predicted value; number of exacerbations in the last 12 months; number of hospital admissions due to COPD in the last 12 months; BMI; exercise capacity; smoking; HRQoL measured by CCQ; dyspnea measured by mMRC; and comorbidities. Secondly, independent variables that signifi- cantly predicted the dependent variable with p < 0.20 in the bivariate analyses were entered in the multivariate stepwise logistic regression analyses with the same depend- ent variable. Table 1. Differences in patients who died in either specialized palliative care or in nursing homes (n ¼ 770). Patients receiving specialized palliative care, in-patient or in their own home (n ¼ 355) Nursing home and short-term facilities (n ¼ 415) p-value, diff between sp pall care and nursing homeMean (SD) Mean (SD) Time between last visit and death, days 662.6 (518.5) 618.9 (521.4) 0.24 Demographic variables Age 73.9 (8.0) 79.3 (7.7) <0.001 n (%) n (%) Gender Men 168 (47.3%) 204 (49.2%) 0.61 Women 187 (52.7%) 211 (50.8%) Social situation: Living alone 48 (32.9%) 68 (56.7%) <0.001 Co-habiting 98 (67.1%) 52 (43.3) Clinical variables n (%) n (%) Stage of COPD 0.28 I: (80-100% of predicted FEV1) 11 (4.3%) 6 (2.7%) II: (50-79% of predicted FEV1) 86 (33.6%) 73 (32.7%) III: (30-49% of predicted FEV1) 103 (40.2%) 98 (43.9%) IV: (0-29% of predicted FEV1) 56 (21.9%) 43 (19.3%) Mean (SD) Mean (SD) Number of exacerbations in the last 12 months 1.37 (2.06) 1.24 (2.04) 0.48 Number of hospitalizations in the last 12 months 0.62 (1.30) 0.76 (1.82) 0.32 FEV% of predicted value 43.50 (18.42) 43.52 (16.65) 0.99 Exercise capacity 2.42 (2.79) 1.79 (2.58) 0.012 Patient -reported variables n (%) n (%) Smoking: Non-smoker 15 (4.7%) 40 (13.5%) <0.001 Have quit smoking 205 (64.9%) 188 (63.5%) Still smoking 96 (30.4%) 68 (23%) Mean (SD) Mean (SD) Dyspnea 2.61 (1.30) 2.80 (1.23) 0.113 HRQoL (CCQ) 2.29 (1.34) (n ¼ 150) 2.41 (1.22) (n ¼ 124) 0.42 HRQoL (CAT) 17.95 (7.61) (n ¼ 59) 17.78 (6.90) (n ¼ 45) 0.91 Comorbidity n (%) n (%) Heart failure 45 (18.4%) 92 (36.7%) <0.001 Ischemic heart disease 60 (24.4%) 102 (39.8%) <0.001 Stroke 18 (8.9%) 21 (11.5%) 0.39 Hypertension 118 (45.0%) 173 (60.3%) <0.001 Diabetes 35 (13.3%) 62 (24.7%) 0.001 Osteoporosis 39 (17.9%) 57 (26.9%) 0.025 Depression/anxiety 65 (25.0%) 88 (33.3%) 0.036 Lung cancer 19 (9.5%) 17 (8.9%) 0.84 Alpha-1-antitrypsin deficiency 3 (1.7%) 0 0.094 T-test was used for comparisons between continuous variables, Chi 2 for comparisons between categorical, variables. 142 I. HENOCH ET AL. Results In total, 355 and 415 patients admitted to specialized pallia- tive care (SPC) and nursing homes (NH), respectively, were included in the study. Differences between patient groups Patients receiving SPC were significantly younger (mean 73.9 vs 79.3 years, respectively) and more often co-habiting than NH patients (Table 1). Patients in specialized palliative care were also to a larger extent still smokers (30.4% vs 23.0%, p < 0.001). NH patients had significantly more comorbidities than patients in SPC, i.e., a significantly higher proportion were affected by heart failure, ischemic heart disease, hyper- tension, diabetes, osteoporosis, and depression (p ¼ 0.036 – 0.001, see Table 1). Characteristics and content of care: symptom management There were no significant differences in symptom prevalence between SPC and NHs for any of the symptoms of pain, death rattle, nausea, anxiety, dyspnea, or delirium (Table 2). Neither was there a difference as regards the prevalence of pressure ulcers at admission or at death. There were, however, significant differences for other parameters and activities. Compared to NH patients, SPC Table 2. Characteristics of symptom experience, assessment, and management registered in specialized palliative care and in nursing homes. Palliative care characteristics Patients receiving specialized palliative care (n ¼ 355) Nursing home and short-term facilities (n ¼ 415) p-value, diff between sp pall care and nursing home Pressure ulcer on admission 0.53 No pressure ulcer 285 (85.3%) 292 (85.1%) Grade 1 21 (6.3%) 19 (5.5%) Grade 2 17 (5.1%) 14 (4.1%) Grade 3 7 (2.1%) 11 (3.2%) Grade 4 4 (1.2%) 7 (2.0%) Pressure ulcer at death 0.88 No pressure ulcer 242 (71.6%) 255 (72.9%) Grade 1 43 (12.7%) 41 (1.7%) Grade 2 37 (10.9%) 25 (7.1%) Grade 3 11 (3.3%) 17 (4.9%) Grade 4 5 (1.5%) 12 (3.4%) Symptoms or assessments during the last week of life Mouth health assessment 253 (78.6%) 193 (62.9%) <0.001 Symptom assessment other than pain 101 (32.0%) 67 (20.5%) 0.001 Pain, prevalence 254 (73.0%) 240 (69.8%) 0.36 Pain assessment 184 (54.1%) 116 (34.3%) <0.001 Prescribed rescue medication for pain 344 (98.3%) 317 (90.3%) <0.001 Pain alleviated 0.74 Totally 213 (80.4%) 199 (81.6%) Partly 52 (19.6%) 45 (18.4%) Not at all 0 0 Rattle, prevalence 204 (58.3%) 183 (53.5%) 0.206 Prescribed rescue medication for rattle 336 (96.3%) 316 (89.8%) 0.001 Rattle alleviated 0.88 Totally 113 (52.8%) 98 (52.4%) Partly 90 (42.1%) 84 (44.9%) Not at all 11 (5.1%) 5 (2.7%) Nausea, prevalence 45 (13.0%) 47 (14.2%) 0.21 Prescribed rescue medication for nausea 324 (92.6%) 259 (74.0%) <0.001 Nausea alleviated 0.117 Totally 41 (69.5%) 27 (52.9%) Partly 15 (25.4%) 23 (45.1%) Not at all 3 (5.1%) 1 (2.0%) Anxiety, prevalence 194 (57.2%) 201 (62.2%) 0.19 Prescribed rescue medication for anxiety 344 (98.3%) 311 (88.4%) <0.001 Anxiety alleviated 0.49 Totally 142 (68.6%) 134 (65.4%) Partly 65 (31.4%) 71 (34.6%) Not at all 0 0 Dyspnea, prevalence 179 (52.2%) 150 (44.9%) 0.058 Dyspnea alleviated 0.060 Totally 83 (43.7%) 48 (31.4%) Partly 104 (54.7%) 101 (66.0%) Not at all 3 (1.6%) 4 (2.6%) Delirium, prevalence 77 (22.7%) 85 (26.5%) 0.26 Delirium alleviated 0.59 Totally 30 (33.0%) 23 (26.1%) Partly 49 (53.8%) 51 (58.0%) Not at all 12 (13.2%) 14 (15.9%) UPSALA JOURNAL OF MEDICAL SCIENCES 143 patients were more likely to receive symptom assessments during their last week of life as regards mouth health (p < 0.001), pain (p < 0.001), and assessment of symptoms other than pain (p < 0.001). They were also more likely to have prescriptions of rescue medications for pain (opioids), nausea (mainly metoclopramide or haloperidol), anxiety (ben- zodiazepines), and death rattle (anti-cholinergic medication, e.g., glycopyrronium bromide) (p < 0.001). Characteristics and content of care: psychosocial and existential aspects According to the health care staff�s own registrations, death was, to a larger extent, expected more in SPC than in NH (98.3% vs 84.5%, p < 0.001) and SPC was more often the pre- ferred place of death according to the patients (77.2% vs 62.0%, respectively, p < 0.001). EOL discussions were, to larger extent, held in SPC (88.1 vs 66.2%, p < 0.001), and dia- logues and EOL discussions with relatives were more often held in SPC, both about changes in care and transition to EOL palliative care (p < 0.001, Table 3). Relatives in SPC set- tings were more often present at the time of death (65.3% vs 41%, respectively). They were also offered bereavement follow-up more often. Health care staff at SPC units were more satisfied with the care they had been able to provide. Predictors of place of care In the bivariate logistic regression analyses the following var- iables became predictors with p < 0.20: age (p < 0.001), social situation (p < 0.001), BMI (p ¼ 0.015), exercise capacity (p ¼ 0.013), smoking (p ¼ 0.001 and p < 0.001), heart failure (p < 0.001), ischemic heart disease (p < 0.001), hypertension (p < 0.001), diabetes (p ¼ 0.001), osteoporosis (p ¼ 0.026), and depression/anxiety (p ¼ 0.036) (Table 4). In the multivariate stepwise logistic regression analysis, younger age and co- habiting increased the probability of dying in SPC. Table 3. Characteristics of palliative care registered in specialized palliative care and in nursing homes. (chi-square). Palliative care characteristics Patients receiving specialized palliative care (n ¼ 355) Nursing home and short-term facilities (n ¼ 415) p-value, diff between sp pall care and nursing home Death was expected 349 (98.3%) 337 (84.5%) <0.001 Could the patient express his/ her wishes? <0.001 Yes, all the time 44 (12.7%) 61 (18.2%) Lost ability express hours before death 146 (42.2%) 102 (30.4%) Lost ability express days before death 143 (41.3%) 119 (35.5%) Lost ability to express weeks before death 12 (3.5%) 27 (8.1%) Lost ability to express months before death 1 (0.3%) 26 (7.8%) (EOL) communication 280 (88.1%) 210 (66.2%) <0.001 Patients’ preferred place of death? <0.001 Yes 234 (77.7%) 176 (62.0%) Do not know 50 (16.6%) 93 (32.7%) No 17 (5.6%) 15 (5.3%) Anyone present at time of death <0.001 None 68 (19.2%) 88 (21.2%) Relatives 169 (47.6%) 109 (26.3%) Relatives and HCP 63 (17.7%) 61 (14.7%) HCP 52 (14.6%) 153 (36.9%) Do not know 3 (0.8%) 4 (1.0%) (EOL) communication with rela- tives/family <0.001 Have no relatives Yes 3 (0.9%) 8 (2.3%) No 297 (88.4%) 242 (69.3%) Do not know 27 (8.0%) 73 (20.9%) Family invited to bereavement dialogue 9 (2.7%) 26 (7.4%) <0.001 Yes 329 (93.5%) 271 (66.6%) No 10 (2.8%) 74 (18.2%) Do not know 13 (3.7%) 62 (15.2%) Parenteral or enteral infusion of fluids last 24 hours 0.65 No 314 (93.5%) 336 (96.3%) Yes 21 (6.3%) 9 (2.6%) Do not know 1 (0.3%) 4 (1.1%) Consultation with pain unit 2 (0.6%) 4 (1.0%) 0.53 Consultation with palliative care team 17 (4.8%) 37 (8.9%) 0.025 Consultation with other hospital unit 12 (3.4%) 22 (5.3%) 0.20 Contact with physiotherapists, occupa- tional therapists and social workers 4 (1.1%) 10 (2.4%) 0.18 Spiritual counselor 5 (1.4%) 2 (0.5%) 0.18 144 I. HENOCH ET AL. Discussion Despite similar prevalence of symptoms, some patients were referred to SPC, whereas others were admitted to NHs. A higher mean age for persons residing in NHs, when com- pared to patients cared for at SPC, is a common finding, as there is a tendency to refer frail older patients with multiple illnesses, to geriatric services or to NHs. However, if aiming at equal and equitable care, the main focus should be on actual care needs. In our register study, the symptom prevalence was similar in SPC and NHs. Moreover, NH patients had a higher prevalence of comorbid- ities, including cardio-vascular diseases. Regardless, they were admitted to NHs, which constitute a lower level of care in Sweden. Most of the staff at SPC units in Sweden are reg- istered nurses or physicians, whereas a majority of the staff at NHs are assistant nurses. Our results support the results from Cohen et al., who analyzed place of death for patients diagnosed with lung cancer and patients diagnosed with COPD in fourteen countries (23). Compared to patients diag- nosed with lung cancer, patients affected by COPD were less likely to die at home or in a specialist palliative care facility, but were more likely to die in hospital or to be referred to NHs (23). The reasons for the possible inequality as regards referral to SPC cannot be revealed from our register study. Although we have measurements of symptom prevalence, we do lack data on symptom severity and complexity, which are import- ant factors. One possible reason for the differences that we found might be that patients affected by more intense symptoms, or symptoms that were more difficult to alleviate, were admitted to SPC. As the proportion of relieved symp- toms was similar in SPC and NH despite a great difference in the formal level of competence, this might be an indication of a difference in the initial symptom intensity and complex- ity. If so, the patients were referred to an adequate level of care. However, another explanation might be that older, frail people with multiple illnesses are routinely referred to NHs, without sufficient consideration of the actual symptom bur- den (24). In a qualitative study, barriers to admitting COPD patients to palliative care were, among others, found to be that exacerbations and death in COPD are unpredictable, that professional caregivers lack a coherent and proactive plan and have insufficient experience, and that they hold a negative view of palliative care for end-stage COPD (25). Moreover, there may be a vague or insufficient communica- tion between patients and professional caregivers about care possibilities for end-stage COPD (25). This, together with our findings, indicate that there is a need to discuss palliative care with patients and relatives before routinely admitting patients to NH. Although symptom prevalence and the proportion of alle- viated symptoms were similar, there was a great difference in awareness and in use of a holistic palliative care approach as recommended in the WHO definition of palliative care (26). The staff�s awareness of the impending death was higher in the SPC units, which translated into pre-emptive Table 4. Logistic regression with nursing home or specialized palliative care as place of death as dependent variable. Nursing home as reference variable, i.e. 0 and specialized palliative care as 1. Specialized palliative care as place of death compared to nursing home Bivariate Multivariate Independent variables OR (95% CI) p OR (95% CI) p Constant 1171.14 p < 0.001 Time between last visit and death 1.00 (1.00, 1.00) 0.24 Age, divided by 10 years 0.42 (0.34, 0.51) <0.001 0.36 (0.22, 0.61) <0.001 Gender (1¼ man, 2 ¼ woman) 0.93 (0.70, 1.23) 0.61 Social situation (0¼ living alone; 1¼ co-habiting) 2.67 (1.62, 4.40) <0.001 4.57 (2.17, 9.62) <0.001 FEV1% of predicted value 1.00 (0.99, 1.01) 0.99 Number of exacerbations in the last 12 months 1.03 (0.95, 1.12) 0.47 Number of hospitalizations in the last 12 months 0.94 (0.84, 1.06) 0.32 BMI 1.02 (0.99, 1.06) 0.15 Exercise capacity 1.09 (1.02, 1.17) 0.013 Smoking: Non-smoker 1 Have quit smoking 2.91 (1.56, 5.44) 0.001 Still smoking 3.77 (1.93, 7.34) <0.001 Quality of life (CCQ) (0-6) 1.00 (0.95, 1.06) 0.90 Dyspnea (mMRC) (0-4) 1 0.98 (0.38, 2.51) 0.97 0.96 (0.37, 2.49) 0.94 0.58 (0.23, 1.44) 0.24 0.72 (0.30, 1.76) 0.48 Comorbidity Heart failure 0.39 (0.26, 0.59) <0.001 Ischemic heart disease 0.49, (0.33, 0.72) <0.001 Stroke 0.75 (0.38, 1.45) 0.39 Hypertension 0.54 (0.38, 0.76) <0.001 Diabetes 0.47 (0.30, 0.74) 0.001 Osteoporosis 0.59 (0.37, 0.94) 0.026 Depression/anxiety 0.67 (0.46, 0.98) 0.036 Lung cancer 1.08 (0.54, 2.12) 0.84 UPSALA JOURNAL OF MEDICAL SCIENCES 145 measures, not only in symptom management, but also as regards psychosocial and existential domains. PRN rescue medications for pain, nausea, anxiety, and death rattles were generously prescribed for patients at SPC units. Moreover, EOL discussions with patients and relatives were performed to a higher extent. For this reason, it is likely that the rela- tives were more prepared of the impending death, were pre- sent when their loved ones died, and were offered bereavement follow-up meetings more frequently. This is perhaps the greatest difference in the care deliv- ered: whereas traditional care is focused on day-to-day care, the palliative care approach and the palliative care philoso- phy underline the importance of preparing for a good death. Not only in physical terms, but also as regards the psycho- logical, social, and existential/spiritual domains, both for the patient and his or her family (27). The results of our study indicate that health care staff should make informed decisions when referring patients with diagnosis other than cancer to EOL care. Despite hav- ing a similar prevalence of symptoms but a higher propor- tion of co-morbidities, older patients were still referred to NHs. Judging from the frequency of successful symptom relief, NHs probably constitute an adequate level of care for a pro- portion of elderly COPD patients. However, the palliative care approach, including a higher awareness, would prob- ably further increase their outcomes. If a conscious pallia- tive care philosophy is also applied at NHs for patients who have prognostic uncertainty, symptom assessment of com- mon symptoms, as well as prescription of rescue medication for frequent symptoms would be more likely, as a result. Moreover, it would be possible to initiate advance care planning and EOL discussions at an earlier stage, which would likely result in well-informed and more prepared patients. This would be an example of effective resource utilization. Limitations to our study include its retrospective approach. The strengths are that the Swedish National Airway Register includes a representative number of patients diagnosed with COPD, with different severities and about two-thirds of deaths in Sweden are registered in the SRPC. However, merging two registers resulted in a substantial number of missing participants. Increasing the number of patients registered in both registers will improve the data quality in subsequent studies. We conclude that despite similar symptom prevalence, older persons are more likely to be referred to NHs. If apply- ing a palliative care philosophy in NHs, routine symptom assessment and prescription of rescue medication for fre- quent symptoms, would be more likely. Promoting advance care planning and EOL discussions at an earlier stage would result in more prepared patients and families. Disclosure statement No potential conflict of interest was reported by the authors. Notes on contributors Ingela Henoch, RN, PhD, Associate Professor, researcher at Angered Hospital and senior lecturer at Sahlgrenska Academy, Institute of Health and Care Sciences, University of Gothenburg, Sweden. Peter Strang, MD, PhD, Karolinska Institutet, Professor at Department of Oncology-Pathology, Stockholm, and researcher at Stockholms Sjukhem Foundation Research and development unit, Stockholm, Sweden. Claes-G€oran L€ofdahl, MD, PhD, Senior Professor at University of Lund and at COPD Center, Institute of Medicine, Sahlgrenska University Hospital, University of Gothenburg, Sweden. Ann Ekberg-Jansson, MD, PhD, Research manager at Department of Research and Development, Region Halland and Associate Professor at The Sahlgrenska Academy, Institute of Medicine, University of Gothenburg, Sweden. ORCID Ingela Henoch http://orcid.org/0000-0002-1987-5419 References 1. Global Strategy for the Diagnosis MaPoC. Global Initiative for Chronic Obstructive Lung Disease (GOLD). 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