Symptoms and functional status of palliative care patients in Iceland Abstract

Background: Palliative care patients experience many debilitating symptoms and functional loss, but few longitudinal studies on the subject are available. Aims: To assess the symptoms and functional status of patients admitted to specialised palliative care, to investigate whether changes occur over the admission period, and to establish whether symptoms and physical and cognitive function differ, based on the service setting. In addition, to participate in the development of the interRAI Palliative Care instrument (interRAI PC). Methods: A prospective longitudinal study (N=123) was conducted at three time points: at admission to specialised palliative care, 14 days post-admission, and at discharge or death. The interRAI PC version 8 was used for data collection. Descriptive statistics were used, together with the Friedman statistical test and Wilcoxon post-hoc test. Results: Patients experienced a wide spectrum of symptoms; the most frequent were fatigue, loss of appetite, pain, difficulty sleeping, insufficient nutritional intake and nausea. Some symptoms stayed relatively stable over time, but others increased, while physical and cognitive function decreased over time. The interRAI PC version 8 proved comprehensive and simple to use. Conclusions: Patients experienced a significant symptom burden and functional loss from admission to discharge or death. Symptoms indicating progressive deterioration became more frequent and severe, while physical and cognitive function decreased at all levels. Overall, inpatients had more symptoms and functional decline than home-care patients. The interRAI PC version 8 proved valuable in collecting clinical information and detecting changes over time as other interRAI suite instruments. Key words: Palliative care ■ End-of-life care ■ Symptoms ■ Functional status ■ interRAI PC


atient care based on the philosophy of palliative care has become increasingly more common and is widely accepted as an effective method of improving

Bryndis Gestsdottir, Head Nurse, Sunnuhlid Nursing Home, Kopavogur, Iceland; Ingibjorg Hjaltadottir, Clinical Nurse Specialist, Emergency, Geriatrics, Rehabilitation Services, Landspitali—The National University Hospital of Iceland and lecturer, Faculty of Nursing, University of Iceland; Gudrun Dora Gudmannsdottir, Clinical Nurse Specialist, Emergency, Geriatrics, Rehabilitation Services, The National University Hospital of Iceland; Palmi V Jonsson, Director of Geriatric Medicine, National University Hospital of Iceland and Professor, Faculty of Medicine, University of Iceland; Sigridur Gunnarsdottir, Chief Nurse Executive, The National University Hospital of Iceland.;Valgerdur Sigurdardottir, Director of Palliative Medicine, The National University Hospital of Iceland Accepted for publication: April 2015


the quality of care (Davies and Higginson, 2004; Bomba, 2005). Many studies have shown that palliative care patients experience debilitating symptoms such as fatigue, pain, dyspnoea and insufficient nutrition (Steel et al, 2003; Brandt et al, 2006; Jakobsson et al, 2008; Barbera et al, 2010), but most studies have only focused on single symptoms. Studies on the functional status of patients in palliative care have shown that decreased physical function strongly indicates deteriorating condition and, therefore, imminent death (Covinsky et al, 2003; Echteld et al, 2004; Costantini et al, 2008; Jang et al, 2014). Information on functional status is therefore of relevance to this group and assists in the making of prognoses for individual patients (Bierman, 2001; Jang et al, 2014). Studies in nursing homes reveal that the ability to perform activities relating to personal hygiene is the first functional parameter to deteriorate with chronic illness, followed by

the ability to use the toilet, even-level walking and, last, the ability to eat and bed mobility (movement while in bed) (Morris et al, 1999). There are few longitudinal studies assessing these activities of daily living (ADL) parameters within palliative care (Strömgren et al, 2005). In palliative care, as in other care settings, it is important to assess the most common symptoms and functional status of patients at admission to organise services and clinical care better (Radbruch and Payne, 2009; Radbruch and Payne, 2010). Comprehensive information on patients’ symptoms, functional status, effect of symptom control and the required level of care is therefore of value (Freeman et al, 2014). It is equally important to assess whether symptoms and functional status change during the clinical course from admission to discharge or death. Regular documentation provides an overview of the individual’s illness trajectory, which can be used to train and prepare healthcare personnel and facilitate dialogue with the relatives about the impending changes. Furthermore, studies have affirmed that a low level of preparedness for the imminent death of a loved one has negative effects on psychological wellbeing and bereavement outcome (Herbert et al, 2006; Hauksdottir et al, 2010). Accordingly, comprehensive information prepares the patient, family, and medical and nursing staff for the changes to come. Various assessment tools have been developed with the aim of measuring patients’ symptoms and functional status, including the interRAI PC instrument version 8 used in this study. The palliative care assessment tool is one of the interRAI assessment instruments used worldwide.They are used to collect a wide range of information about the health condition and functional status of individuals. They are also used to improve the quality of service and care through systematic collection of information and treatment planning. Moreover, they have proved useful in international comparisons and outcome research (Finne-Soveri et al, 2010; Mor et al, 2011; Hjaltadottir et al, 2012). The instruments were developed initially in the USA, but an international group of

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Bryndis Gestsdottir, Ingibjorg Hjaltadottir, Gudrun Dora Gudmannsdottir, Palmi V Jonsson, Sigridur Gunnarsdottir and Valgerdur Sigurðardottir

British Journal of Nursing, 2015 Vol 24, No 9

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CLINICAL FOCUS professionals subsequently developed them for different healthcare settings (interRAI Home Care, interRAI Acute Care, interRAI Long-term Care, interRAI Palliative Care, etc.) (Steel et al, 2003; Mor et al, 2011; Health Council of Canada, 2012; Freeman et al, 2014; Hermans et al, 2014). For example, interRAI Long-term Care has been required in all nursing homes in the USA since 1990 and was implemented in all Icelandic nursing homes in 1996 (Hjaltadottir et al, 2012; InterRAI, 2015) and in many nursing homes in Finland (Finne-Soveri et al, 2010). The interRAI PC instrument was developed as part of the interRAI suite of instruments to improve the continuity of care across settings and to provide comprehensive assessment of palliative and end-of-life needs of adult patients. It is simple to use and suitable for assessing most parameters of importance in palliative care (Steel et al, 2003; Imhof et al, 2007). The interRAI PC instrument also enables identification of quality indicators for quality-of-care assessment (Steel et al, 2003; Freeman et al, 2014; Hermans et al, 2014).This first version was released in 2003. An upgraded version is available at the website http://www. Up to now few clinical studies using interRAI PC are to be found in the literature.

Aims The primary aim of this study was to assess the symptoms and functional status of patients at the point of admission to specialised palliative care in Iceland and to investigate whether symptoms and functional status change over time. Also, to examine the difference in symptoms and functional status between care settings. A secondary aim was to participate in the development of interRAI PC assessment tool.

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Methods A longitudinal design was used prospectively to collect data at three time points, using the assessment tool interRAI PC version 8. At each time point, data were collected for a 3-day (72-hour) period. The worst or the most severe symptoms, as well as the largest functional loss during this time, were recorded. The first assessment (T1) covered the first 3  days following admission to palliative care; the second assessment (T2) was made during days 14 to 16 post-admission; and the final assessment (T3) covered the patient’s last 3  days in palliative care service. These last 3  days were either 3  days before the patient was discharged or the last 3 days before death

British Journal of Nursing, 2015, Vol 24, No 9

(post-mortem assessment). Data were collected by the patient’s nurse and physician.They were previously trained in using the interRAI PC instrument. Data collection was structured and standardised following the User’s Guide for the interRAI PC from 2003 (an unpublished manual from the interRAI coordinating committee). Sources of information were clinical records, observations of patients and discussions with them, their families and caregivers.

Sample Participation was offered to all patients who were using the services of the palliative consultation team (PCT) and the general and geriatric palliative care units (PCUs) of Landspitali—The National University Hospital, as well as the palliative home care (PHC) service in the Reykjavik metropolitan area, over a 6-month period (October 2003 to April 2004). Data collection ended in August 2004. Data were available for 123 patients (N=123), who were described at the point of admission to palliative care, but data on all three assessment points were only available for 81 patients (n=81) of the total group (Table 1).

Ethics The study was approved by the National Bioethics Committee of Iceland, reference (02-160), the Icelandic Data Protection Authority, reference (2002120589MS/-) and the Chief Medical Executive of The National University Hospital of Iceland. At that time informed consent was not required.

Assessment tool The interRAI PC instrument version 8 is divided into 16 domains: demographic data, health conditions including pain, fatigue and other symptoms, oral and nutritional status, skin condition, cognition, communication, mood and behaviour, psychosocial wellbeing, physical functioning, urinary and bowel continence, medications, treatments and procedures, responsibility/directives, social relationships, discharge or death, and finally assessment information. The interRAI PC instrument is supplied with a detailed manual on data collection procedures intended to assure inter-rater reliability (Steel et al, 2003). The inter-rater reliability of the interRAI PC instrument evaluation has been assessed in both Iceland and other countries. The reliability coefficient (the average kappa value for each domain) varies between 0.76 and 0.95 (Steel et al, 2003). In this study, the

reliability was tested for 30 patients, and the average kappa value for the whole interRAI PC instrument was 0.65.

Variables and coding The variables used in this study include background variables, 13 symptoms and 9 assessment parameters for functional status. The symptoms and assessment parameters studied here were chosen illustrating spectra of common symptoms in palliative care (Sebastian et al, 1993; Covinsky et al, 2003; Steel et al, 2003; Echteld et al, 2004; Jakobsson et al, 2008; Wijk and Grimby, 2008; Barbera et al, 2010). The interRAI PC instrument assesses symptoms based on whether they were detectable at any point in the preceding 3 days. Using the tool, the severity of the symptoms was coded from 0 to 3, where 0 indicates that the symptom was not present, and 3 indicates that the patient experienced the symptom daily in the preceding 3 days: The oral and nutritional status was scored 0–2, where 0=sufficient intake, 1=losing 2 or more pounds per week, and 2=substantial weight loss. The ADL parameters were also assessed in the preceding 3  days, detecting the largest functional loss, coded from 0 to 6, where 0 represents independence, and 6 represents total dependence. For the purpose of analysis, for each ADL a response of ‘the activity did not occur’ was converted to the score representing ‘total dependence’. ‘Physical function’ considered: ■■ Personal hygiene ■■ Eating ■■ Walking ■■ Toilet use ■■ Bed mobility (movement while in bed). Bladder continence was coded 0–5, where 0=no urinary collection device, 1–4=the type of collection device and 5=adult diaper. Bowel continence was scored from 0=continentcomplete control or 1=continent with ostomy-complete control with ostomy device, through to 6=incontinent, and a value of 8 indicates that bowel movement did not occur during the assessment period. Finally, cognitive and communication skills were assessed, considering the patient’s capability in decision-making and in making themselves understood. The coding of cognitive function for daily decision making and patients’ capability of making themselves understood was 0–4, where 0=independent and making themselves understood without difficulty, and 4=severely impaired or rarely/ never understood.


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70 years (SD=12.36), and the range was 56 years (39–95) with 56% over 70 years of age. The number of days in palliative care (n=81) varied from 15 to 284 (range 269 days) with the mean value of 70.6 (median 38; SD 66.99). During the study period (6 months), 111 individuals left the palliative care service, of whom 81 died and 30 were discharged elsewhere (10 to an acute hospital, 4 to a nursing home, 12 discharged home and 4 lost to followup). Twelve patients were still in the palliative care service at the end of the study Of these, 11 were cared for by PHC and 1 at a PCU.

N=123 (%)

n=81 (%)


36 (29)

26 (32)


28 (23)

22 (27)


43 (35)

26 (32)


16 (13)

7 (9)


59 (48)

40 (49)


64 (52)

41 (51)

Never been married

14 (11)

7 (9)


69 (56)

48 (59)

Patients’ symptoms


27 (22)

17 (21)


12 (10)

9 (11)

Palliative consultation team (PCT)

29 (24)

1 (1)

Palliative home care (PHC)

40 (33)

29 (36)

The results showed that fatigue, loss of appetite and pain were experienced by 70% or more of the participants during each assessment period. Other symptoms were not as common, yet fairly prevalent (Table 2).

General and geriatric palliative care units (PCU)

54 (44)

51 (63)

Difference in symptoms between assessment points


81 (66)

44 (54)

Discharged elsewhere

30 (24)

25 (31)

Remaining in PC at the end of the research period

12 (10)

12 (15)

The severity of four symptoms changed significantly between the three assessment points (Table 3): loss of appetite, weight loss due to insufficient nutritional uptake, shortness of breath with exertion, and dry mouth. Loss of appetite increased significantly from admission to discharge or death. The difference between T2 and T3 was significant (p=0.003). There was also a significant change in insufficient nutritional intake across the whole assessment period, with statistically significant differences between T1 and T3 (p=0.009) and between T2 and T3 (p

Symptoms and functional status of palliative care patients in Iceland.

Palliative care patients experience many debilitating symptoms and functional loss, but few longitudinal studies on the subject are available...
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