Systematic symptom and problem assessment at admission to the palliative care ward – perspectives and prognostic impacts

Systematic symptom assessment by palliative care specialists has been established as a routine measure within specialist inpatient palliative care (SIPC) within the last decades [1‐3]. In addition, patients’ self-assessment of multidimensional symptoms and problems (patient-reported outcomes: PROs) also grew in importance over the last years. Several studies have highlighted the relevance of incorporating patient perspectives alongside those of clinicians when developing palliative care measures [1‐5]. A previous study demonstrated significant differences between patients’ and physicians’ ratings in specific symptoms even when using identical scales, underlining the importance of this double assessment and especially the need for obtaining self-assessments [6]. However, in SIPC daily clinical practice, systematic self-assessment often turns out to be complicated due to physical and cognitive impairments of these severely ill patients and can only be performed in minor proportion of patients [7, 8].

Treatment on a SIPC ward aims to improve physical as well as psychosocial and spiritual symptoms and problems of patients with advanced life-limiting diseases to later allow discharge to other palliative care services if needed and possible. These include specialist palliative home care teams, inpatient hospices, community hospice teams, day hospices and outpatient clinics [9]. Thus, multiprofessional treatment actually aims to focus, inter alia, on preparation for further care after discharge. However, in a varying proportion of up to 60-70% of patients [9] discharge will not be achievable and patients will later die on the SIPC ward. Understanding realistic aims of SIPC early after admission to the SIPC ward might help to focus treatment and communication with the patients and their family caregivers either on preparation for further care or on nearing death. Today only few socio-demographic or disease-related factors of prognostic impact are known, [10] and the prognostic impact of symptoms or specific constellations of physical and psychosocial problems is still unclear. Some previous studies aimed to define symptom clusters (SCs) that might help to understand the patients’ situation during palliative care more comprehensively [11‐15]. A review analysis pointed out that these studies were indeed able to work out similar clusters grouping into four typical issues (anxiety/depression, nausea/vomiting, nausea/appetite loss, and fatigue/dyspnea/drowsiness/pain), but their impact and influencing factors remain inconsistently defined [16].

The underlying study aimed to evaluate patients’ main symptoms and problems at admission to a SIPC ward and their prognostic impact concerning dying on the ward. Symptoms were assessed in terms of self-assessment by patients and proxy-assessment by palliative care specialists (physicians). However the prognostic impact was analysed concerning the proxy-assessment only.

Secondary aims were (1) to analyse the prognostic value of symptoms when combined into symptom clusters (proxy-assessment only); and (2) to evaluate if proxy- and self-assessment of specific symptoms might differ or correspond.

This prospective study analysed systematic assessment of symptoms and problems (self- and proxy-assessment) in a large cohort of more than 1200 patients immediately after admission to an SIPC ward and the prognostic impact of the proxy-assessment results. Additionally, the prognostic value of symptoms when combined into symptom clusters (proxy-assessment) was evaluated as well as agreement between proxy- and self-assessment.

Both, proxy- and self-assessment, revealed weakness, impaired mobility need of assistance with activities of daily living, overburdening of family caregivers, and tiredness as the most frequent symptoms or problems with at least moderate intensity in minimum 70% of patients. Probably, these problems and symptoms have caused the admission to the SIPC ward. Additional symptoms were appetite loss and pain. This is consistent with previous studies using HOPE-SP-CL assessment on German SIPC wards, in which most frequent symptoms of at least moderate intensity were in descending order: weakness, need of assistance with activities of daily living, tiredness, appetite loss, and overburdening of family caregivers with 91-65% [11, 17]. Overall, problems and symptoms impairing autonomy and mobility, but not primarily pain or dyspnea, seem to be the main reasons for admission to SIPC wards at least in Germany. In contrast, other studies reported uncontrolled pain as most prevalent reasons for admission to SIPC wards in cancer patients [31]. This heterogeneity might be caused by different admission policies in different countries, the focus on cancer patients only, or the use of different assessment instruments. Patients in need for early-integrated specialist palliative care during cancer treatment, or those requesting additional specialist palliative care support, mostly suffer from tiredness, weakness, pain, appetite loss and dyspnea in at least moderate intensity [32]. This might demonstrate that pain and dyspnea are even more relevant in early advanced cancer disease, while impairment of mobility and autonomy gain in relevance later on [33]. With a mean ECOG performance status of 3.2 (of a maximum of 4) and more than half of the patients dying on the SIPC ward, our cohort includes a majority of patients in a late stage disease. The vulnerability of our patients is also evident from the fact that about 40% of our patients were admitted via the emergency room or directly from home care, which suggests that a SIPC treatment was not proactively planned or not sufficient, but an emergency admission necessary. Other studies with potentially other admission policies report considerably lower ECOG performance status in oncology patients on a palliative care unit of ECOG 2 in median [34].

In contrast to MIDOS, IPOS assessment includes additional psychosocial problems with family or friends being anxious or worried about him/her, feeling anxious or worried about his/her illness or treatment, and feeling depressed. 80-90% of patients reported these aspects as being present with at least moderate intensity. This high impact of psychosocial aspects is also reflected by the IPOS Total Score (32.0 of 68: 47%), which might indicate a higher burden compared to MIDOS Total Score (11.3 of 30: 38%), which mainly asks for physical problems. Patients’ high psychosocial burden in their last weeks and days of life got also evident in the high mean distress level, which indicates that about 80% of 323 patients were in need of professional psychological support.

Conduct of self-assessment could be improved over time by repeated training of all health care professionals on the SIPC ward. During the first months of assessment, and the use of MIDOS, 21% of 271 patients completed the questionnaire. After changing the self-assessment tool to IPOS 34% of 935 patients completed the questionnaire. The increase of completed IPOS compared to MIDOS is probably due to restructuring with implementing the IPOS (e.g. reminder routines and addressing family caregivers to help) as also shown in previous studies [25, 27]. However, about half of these patients needed additional help by family caregivers or healthcare professionals, which we can conclude from the IPOS data assessed only, since this information was not obtained in the MIDOS. Several previous studies have also experienced difficulties of self-assessment in palliative care settings with rates of completed questionnaires ranging from 22 to 53% with increased rates after staff training [7, 34, 35]. Overall, comprehensive self-assessment seems to be limited to a minor proportion of patients during SIPC. Therefore, further knowledge about specific impact of self-assessments might help to adapt the self-assessment to patients’ individual possibilities.

In our study, palliative care specialists’ assessment showed correlation with the patients’ self-assessment concerning some corresponding items. Agreement between patients and palliative care specialists was highest for “classical physical symptoms” as pain and dyspnea followed by nausea, vomiting, constipation and appetite loss. In contrast, for anxiety, tension and sleeping problems, weakness and tiredness, which represent symptoms with high relation to psychosocial and care-related aspects, agreement was poor or missing. These results strengthen previous data (same setting) demonstrating significant differences in ratings between patients and palliative care physicians with regard to tiredness, lack of energy, anxiety, and sadness, which were mainly underestimated by the physicians [6]. Therefore, routine assessment should focus especially on psychosocial- and care-related aspects in those patients in whom a complete assessment is not possible due to physical impairment. However, patients in palliative care settings often suffer from cognitive impairment, which impedes a self-assessment but also renders proxy-assessment difficult. Nevertheless it is recommended, since it is the only possible approach to assess symptom burden [17, 36]. We ensured that experienced palliative care specialists completed the assessment.

Multivariate regression analysis confirmed, as anticipated, higher ECOG performance status as a significant predictor for dying on the SIPC ward, but also symptoms aside from the performance status like at least moderate dyspnea, appetite loss, tiredness, and disorientation/confusion as significant predictors. A previous study showed higher scores for fatigue, drowsiness, shortness of breath, and appetite loss to be associated with dying on the SIPC ward [10]. Future studies should prospectively evaluate the prognostic impact of specific symptom complexes, like dyspnea/shortness of breath, tiredness/fatigue, and disorientation/confusion/drowsiness during SIPC.

In our study four SC of the HOPE-SP-CL assessment could be identified: (1) Deteriorated Physical condition/Decompensation of Home Care, (2) Emotional, (3) Gastrointestinal and (4) Other, though the latter could not be interpreted due to low internal consistency. Thus our results were not completely similar to previously described SCs: (1) Anxiety/Depression, (2) Nausea/Vomiting, (3) Nausea/Appetite loss, and (4) Fatigue/Dyspnea/Drowsiness/Pain [16]. Another previous study also using HOPE-SP-CL assessment reported five SCs: (1) Nausea/Vomiting; (2) Anxiety/Tension/Feeling Depressed; (3) Wound Care/Disorientation/Confusion; (4) Organization of Care/Overburdening of Family; (5) Weakness/Tiredness/Need for Assistance with Activities of Daily Living/Appetite Loss. The approach to distinguish between cancer and non-cancer patients was not possible by SCs [11]. However, predictive impact of SC analyses was observed in two other studies using other assessment tools. The presence of two or more SCs had prognostic relation to survival in a Portuguese Tertiary Palliative Care Clinic [13]. Another study demonstrated a negative impact of four SCs occurring during palliative chemotherapy on functioning and quality of life in advanced cancer patients [14]. In contrast, in our study, only one broad SC, Deteriorated Physical Condition/Decompensation of Home Care, showed prognostic impact concerning later dying on the SIPC ward versus discharge.

This study is characterized by its strengths, including the large patient number and evaluation of routine assessment, but has also some notable limitations. First, it represents a single center experience, which might not be completely transferable to all SIPC wards. In addition two different questionnaires were used, which impedes comparability. Also we know that almost 50% of patients using the IPOS had help completing it, whereas there is no data for the MIDOS available. We cannot determine the influence of informal or professional caregivers support concerning the answers.

Evaluation of specific psychological distress, such as levels of anxiety and depressive symptoms, is limited, since we only used the MIDOS/IPOS and the Distress Thermometer but no specialized psychological tool. Additionally physician - patient agreement was only analysable for corresponding symptoms in the assessments used, which narrows the scope of its significance.

In conclusion, problems and symptoms impairing autonomy and mobility, including weakness, tiredness or needing assistance with daily living activities, but not primarily pain or dyspnea, lead to acute admissions to SIPC wards. Our study indicates that comprehensive patient self-assessment can be improved by staff training, but remains limited to a minor proportion of patients during SIPC. Palliative care specialists’ assessment is almost similar to the patients’ concerning physical symptoms, especially pain, dyspnea, nausea, vomiting, constipation and appetite loss, while their estimation of psychosocial and care-specific aspects seems rather insufficient. Therefore, routine assessment should particularly focus on psychosocial and care-related aspects in those patients in whom a complete self-assessment of physical and psychosocial problems is not possible. Self-assessment with Distress Thermometer and IPOS adds important information on the patients’ psychosocial situation – the first as a screening, the second with detailed information. Higher symptom severity in dyspnea, appetite loss, tiredness, and disorientation/confusion as well as an increased ECOG as assessed at admission, seem to be predictive for higher probability of dying on the SIPC ward.