Palliative care patient emergency department visits at tertiary university-based emergency department in Ireland.

INTRODUCTION: Palliative care patients often present to the emergency department (ED) for various reasons e.g., acute illness, pain, altered mental status, and complications of therapy. Many visits involve less severe etiologies e.g., dyspnea, constipation, fear as patients approach the end of life, which may be more effectively and efficiently managed outside of the ED. The objective of this study is to identify and assess the frequency of presenting complaints, primary diagnosis, triage acuity, need for admission, in an Irish setting. METHODS: A single-center retrospective, observational study of palliative care patients presenting to a tertiary-care university hospital emergency department in Dublin, Ireland. Study subjects were identified using the palliative care database and cross-referencing with the ED electronic patient record system database. The primary objective to identify potential areas to minimize ED visits and improve patient care and quality of life by elucidating reasons for visits. Outcome measures include presenting complaint, primary diagnosis, triage severity score, admission, discharge, death in hospital. Statistical analysis presented as descriptive statistics. RESULTS: Four-hundred-ninety-nine ED visits, 245 (49%) were male, and 254 (51%) were female with a mean age of 69.3 years-of-age. Most patients, 285 (57.1%) self-referred to the emergency department, with general practitioners and skilled nursing facility referrals 72 (14.4%) and 39 (7.8%), respectively. Primary diagnoses were various cancers, chronic obstructive pulmonary disease, congestive heart failure, and dementia. Major reasons for visits were dyspnea, pain, falls, trauma, fever, and altered mental status. Two-hundred-eighty-nine patients (58%) had an emergency severity index (ESI) score of 1 or 2 demonstrating a higher level of acuity. Three-hundred-fifty-eight (71.7%) were admitted, 141 (28.3%) discharged to home, 64 (12.8%) admitted patients died during their hospital admission. CONCLUSIONS: Palliative care patients utilize ED services not uncommonly. Though many of these patients presented with higher acuity triage scores, 42% had lower ESI scores and may be effectively managed outside of the ED. These data suggest developing mechanisms for these patients to be urgently evaluated in their homes or facilities obviating the need for an ED evaluation.

Community frailty response service: the ED at your front door.

We describe the expansion and adaptation of a frailty response team to assess older people in their usual place of residence. The team had commenced a weekend service to a limited area in February 2020. As a consequence of demand related to the COVID-19 pandemic, we expanded it and adapted the model of care to provide a 7-day service to our entire catchment area. Five hundred and ninety two patient reviews have been completed in the first 105 days of operation with 43 patients transferred to hospital for further investigation or management following assessment.

Oxaliplatin-related dysphagia: Mixed-methods study.

OBJECTIVES: To evaluate participant-reported atypical dysphagia symptoms and their association with oxaliplatin treatment. METHODS: This observational study recruited 73 adults with solid tumours outside the head, neck or upper gastrointestinal tract. All had dysphagia, were in hospital or hospice and were treated by Medical Oncology, Radiation Oncology or Palliative Care. Participants reported their experiences of swallowing difficulties by semistructured interview. Oral Health Assessment Tool was used to ensure swallow difficulties were not due to mucositis. Responses were transcribed and analysed by content analysis. Atypical difficulties were examined for association with oxaliplatin treatment by Fischer's Exact. RESULTS: Oxaliplatin treatment was associated with three unusual dysphagia symptoms: problems with cold or hot bolus (p=0.01), pins and needles (p=0.001) and throat spasm (p=0.035). Carbonation was problematic for one participant. Chemotherapy commencement coincided with swallow problem onset for 67%. Dysphagia symptoms were unrelated to mucositis (p=0.165). CONCLUSIONS: Swallowing difficulties in oxaliplatin-treated patients are atypical and attributable to chemotherapy commencement. Previous research suggests that dysphagia is triggered by cold exposure, but hot and carbonated boluses also caused problems here. Dysphagia symptoms and triggers should be studied more fully to help patients safely enjoy their meals and prevent food avoidance, which could exacerbate malnutrition.

Dysphagia in Solid Tumors Outside the Head, Neck or Upper GI Tract: Clinical Characteristics.

CONTEXT: Dysphagia is common in cancer, but underlying pathophysiology and manifestations within patients are unknown. OBJECTIVES: To examine dysphagia characteristics in those with solid malignancies outside the head, neck and upper gastrointestinal tract. METHODS: Seventy-three individuals with dysphagia (46 male, 27 female, aged 37-91) were recruited from a parent trial conducted in two acute hospitals and one hospice. Cranial nerve function, Oral Health Assessment Tool (OHAT), Mann Assessment of Swallowing Ability (MASA) and Functional Oral Intake Scale (FOIS) evaluated swallow profile. RESULTS: Only 9/73 (12%) had documented dysphagia prior to study enrollment. MASA risk ratings found n=61/73 (84%) with dysphagia risk and n=22/73 (30%) with aspiration risk. Food texture modification was required for n=34/73 (47%), fluid texture modification for n=1/73 (1%). Compensatory strategies for food were needed by n=13/73 (18%) and for fluids by n=24/73 (33%). Cranial nerve deficits were present in n=43/73 (59%). Oral health problems were common, with xerostomia in two-thirds. Worse dysphagia on MASA was associated with disease progression, affecting hospice, and palliative care the most. Worse performance status was indicative of poorer MASA raw score (P<0.001, OR 2.2, 95% CI 1.5-3.4), greater risk of aspiration (P=0.005, OR 2.1, 95% CI 1.3-3.6) and lower FOIS (P=0.004, OR 2.0, 95% CI 1.2-3.2). CONCLUSION: Dysphagia management in those with cancer requires robust assessment to uncover clinically important needs like food texture modification and safe swallowing advice. Better assessment tools should be developed for this purpose. Oral health problems should be routinely screened in this population since they exacerbate dysphagia.

A comparative study of the palliative care needs of heart failure and cancer patients.

AIMS: Studies suggest that patients with advanced heart failure (HF) have unmet palliative care (PC) needs. However, many of these studies have been retrospective or based on patients receiving poorly coordinated ad hoc care. We aimed to demonstrate whether the PC needs of patients with advanced HF receiving specialist multidisciplinary coordinated care are similar to cancer patients deemed to have specialist PC needs; thereby justifying the extension of specialist PC services to HF patients. METHODS AND RESULTS: This was a cross-sectional comparative cohort study of 50 HF patients and 50 cancer patients, using quantitative and qualitative methods. Both patient cohorts were statistically indistinguishable in terms of symptom burden, emotional wellbeing, and quality-of-life scores. HF patients had good access to community and social support. HF patients particularly valued the close supervision, medication monitoring, ease of access to service, telephone support, and key worker provided at the HF unit. A small subset of patients had unmet PC needs. A palliative transition point is described. CONCLUSION: HF patients should not be excluded from specialist PC services. However, the majority of their needs can be met at a HF unit. Recognition of the palliative transition point may be key to ensuring that end-of-life issues are addressed. The palliative transition point needs further evaluation.

Validation of the Demoralization Scale in an Irish advanced cancer sample.

OBJECTIVE: This article presents a validation study of the Demoralization Scale, a 24-item, 5-point response questionnaire developed by Kissane et al. in 2004 to assess demoralization in advanced cancer patients. METHOD: One hundred Irish inpatients with advanced palliative cancer completed the Demoralization Scale and measures of depression, hopelessness, quality of life, and personal hopefulness. RESULTS: Principal component analysis of the Demoralization Scale yielded four similar factors found by Kissane et al. (2004), namely, loss of meaning, dysphoria, disheartenment, and sense of failure. A new factor, the hopelessness factor, was also found in the current study. The reliability of the five factors was good, ranging from .72 to .93. Contrary to the findings of Kissane et al.'s (2004) study, divergent validity of the Demoralization Scale was not supported. Demoralized patients were significantly more likely to be depressed than those that did not score highly on the Demoralization Scale. In addition, this study found significantly lower levels of demoralization in general compared with Kissane et al.'s (2004) study. SIGNIFICANCE OF RESULTS: The results of the current study show that, in an Irish palliative care context, demoralization is not differentiated from depression. Additional factor analytic studies are needed to validate the Demoralization Scale.

Dysphagia Prevalence and Predictors in Cancers Outside the Head, Neck, and Upper Gastrointestinal Tract.

CONTEXT: Dysphagia is usually associated with malignancies of the head, neck, and upper gastrointestinal tract but also occurs in those with tumors outside anatomic swallow regions. It can lead to aspiration pneumonia, malnutrition, reduced quality of life, and psychosocial distress. No studies have yet reliably described dysphagia prevalence in those with malignancies outside anatomic swallow regions. OBJECTIVE: The objective of this study was to establish the prevalence and predictors of dysphagia in adults with solid malignancies outside the head, neck, and upper gastrointestinal tract. METHODS: A cross-sectional, observational study using consecutive sampling was conducted. There were 385 participants (mean age 66 ± 12 years) with 21 different primary cancer sites from two acute hospitals and one hospice. Locoregional disease was present in 33%, metastatic in 67%. Dysphagia was screened by empirical questionnaire and confirmed through swallow evaluation. Demographic and clinical predictors were determined by univariate and multivariate binary regression. RESULTS: Dysphagia occurred in 19% of those with malignancies outside anatomic swallow regions. Prevalence was 30% in palliative care and 32% in hospice care. Dysphagia was most strongly associated with cough, nausea, and worse performance status. It was also associated with lower quality of life and nutritional difficulties. CONCLUSION: Dysphagia was common and usually undiagnosed before study participation. It occurred at all disease stages but coincided with functional decline. It may therefore represent a cancer frailty marker. Oncology and palliative care services should routinely screen for this symptom. Timely dysphagia identification and management may improve patient well-being and prevent adverse effects like aspiration pneumonia and weight loss.

Prospective validation of the palliative prognostic index in patients with cancer.

The Palliative Prognostic Index (PPI) was devised and validated in patients with cancer in a hospice inpatient unit in Japan. The aim of this study was to test its accuracy in a different population, in a range of care settings and in those receiving palliative chemotherapy and radiotherapy. The information required to calculate the PPI was recorded for patients referred to a hospital-based consultancy palliative care service, a hospice home care service, and a hospice inpatient unit. One hundred ninety-four patients were included in the study, 43% of whom were receiving chemotherapy /or radiotherapy or both. Use of the PPI split patients into three subgroups based on PPI score. Group 1 corresponded to patients with PPI4 and 6, median survival five days (95% CI 3, 11). Using the PPI, survival of less than three weeks was predicted with a positive predictive value of 86% and negative predictive value of 76%. Survival of less than six weeks was predicted with a positive predictive value of 91% and negative predictive value of 64%. The PPI is quick and easy to use, and can be applied to patients with cancer, in hospital, in hospice, and at home. It may be used by general physicians to achieve prognostic accuracy comparable, if not superior, to that of physicians experienced in oncology and palliative care, and by oncology and palliative care specialists, to improve the accuracy of their survival predictions.

The pitfalls of a systematic MEDLINE review in palliative medicine: symptom assessment instruments.

The Medical Literature Analysis and Retrieval System Online (MEDLINE) database provides many references for reviews, but many relevant articles are missed, especially when the topic is complex. Reported here is the detailed methodology of a PubMed search of MEDLINE augmented by a related articles link search. Of 1181 citations identified, through a PubMed search, 10 articles met the inclusion criteria. Fifty-one were identified through the related articles link; of which 43 were not detected by standard searches using medical subject heading terms. More than 50% were identified using the related articles link. Only 14% of relevant articles were identified using the standard PubMed MEDLINE search. The related articles link is not included in methodologic recommendations for systematic literature reviews but this experience suggests that it is a useful tool in PubMed for reviewing complex evidence. Related links searches are proposed in any systematic PubMed MEDLINE literature review in palliative medicine.

Referral patterns of nonmalignant patients to an Irish specialist palliative medicine service: a retrospective review.

BACKGROUND: Our perception is that the proportion of referrals made to the specialist palliative medicine service (SPMS) in our institution for patients with a primary diagnosis of nonmalignant disease is high and that these patients are often referred late in their illness. We aimed to review the symptom burden and referral patterns of patients with a noncancer diagnosis to the SPMS in our centre. METHODS: All new non-malignant referrals to the SPMS in 2009 were included. Data were collected from patients' medical records and analyzed using Excel. RESULTS: Ninety-two referrals were identified: 60 (65%) female, 32 (35%) male. Mean age 76.5 years (21-92). Reasons for referral included: end-of-life care (n=55, 60%), symptom control (n=23, 25%), home care support (n=13, 14%) and psychological support (n=1, 1%). Mean time from admission to referral was 24.9 days (<1-165). Fifty-six (61%) patients were commenced on a syringe driver (CSCI), with a mean time spent on a CSCI of 2.8 days (< 1-17). Primary outcomes included: death (n=72, 78.5%), home discharge (n=9, 10%), discharge to another care institution (n=6, 6.5%), discharge from service (n=3, 3%) and hospice transfer (n=2, 2%). Mean time from referral to outcome was 4.6 days (<1-35). CONCLUSION: The proportion of noncancer patients referred to the SPMS is our institution is high. This study confirms that nonmalignant referrals are commonly sent to the SPMS when patients are actively dying or very imminently dying. Further education of colleagues is warranted in the role of the SPMS, particularly with regard to earlier referral.

Survey of specialist palliative care services for noncancer patients in Ireland and perceived barriers.

BACKGROUND: Specialist palliative care (SPC) services in Ireland are well developed by international standards. However, standardized information on all patients of SPC services is not collected so the proportion of patients seen with a noncancer diagnosis is just an estimate at 5%. AIMS: To describe Irish SPC services' provision for, and attitudes to noncancer patients. METHOD: Postal questionnaire of clinical managers of all SPC services listed in the directory of SPC services in Ireland, September 2005. RESULTS: Sixty-five questionnaires were returned representing a 100% response rate. Twenty four percent (n = 15) of services limited availability for noncancer patients in some way. Of those services available for noncancer patients, the type of care provided to them was the same as for cancer patients in 81% of services (n = 50). The percentage of all patients seen in 2004 who had a noncancer diagnosis was 7.21%. Only 68% (n = 42) of services had a written referral policy. The top three perceived barriers by SPC service providers were the unpredictable noncancer disease trajectory (mean intensity = 6.77), the resultant difficulties with developing referral criteria (mean intensity = 6.38) and the lack of noncancer disease specific expertise (mean intensity = 5.96). DISCUSSION: There is a mismatch between availability of palliative care services for noncancer patients and uptake. The noncancer disease trajectory continues to be considered a barrier to care. Imaginative models of care need to be developed that are not prognosis based.

Cancer symptom assessment instruments: a systematic review.

PURPOSE: A variety of assessment instruments have been created to identify cancer symptoms. We reviewed systematically cancer symptom assessment instruments published in English. METHODS: A systematic search of the MEDLINE database, Cochrane Library, Cumulative Index of Nursing and Allied Health Literature (CINAHL), and EMBASE was performed. Non-peer-reviewed articles were identified through BIOSIS. Articles were accessed through the related article links in PubMed and references were searched by hand. Studies were included if the instrument had symptom assessment as the primary outcome. Quality-of-life instruments were excluded. RESULTS: We identified 21 instruments; some had undergone modification or validation. An additional 28 studies examined symptom prevalence and interrelations; many involved symptom checklists. Studies varied in design, patient characteristics, symptoms, and outcome. Meta-analysis was not possible due to heterogeneity in design, study outcomes, and validation. Seventy-six articles and two conference abstracts (derived from MEDLINE, Cochrane, CINAHL, EMBASE, BIOSIS, related articles link in PubMed, and search by hand) met inclusion/exclusion criteria. The electronic search (without related links) yielded only 26% of those articles and conference abstracts that met inclusion criteria. Searches by hand of related articles identified 59% of studies. CONCLUSION: Twenty-one instruments were identified as appropriate for clinical use. The instruments vary in symptom content and extent of psychometric validation. Both comprehensive and shorter instruments have been developed, and some instruments are intended for specific symptom assessment or symptoms related to treatment. There is no ideal instrument, and the wide variety of instruments reflects the different settings for symptom assessment. Additional research is necessary.

Communication training for professionals.

With the recognition that the quality of communication by clinicians with patients can be influenced by training, a number of approaches to such training have been described in the literature. Some of these different models for communication training are described in this discussion paper, and the reader is challenged to consider the importance of attending to both skills and attitudes in order to design a truly effective programme of training.