Background: The assessment of patients’ quality of life (QOL) is essential when evaluating the outcome of palliative care; however, no instruments have been validated for measuring symptoms and QOL in patients receiving palliative care in Chile. We aimed to investigate the content validity of the EORTC Quality of Life Questionnaire Core 15 Palliative Care (QLQ-C15-PAL), replicating the methods used previously to shorten the EORTC Quality of Life Questionnaire Core 30 (QLQ-C30) for use among patients in palliative care.
Methods: This cross-sectional study was conducted from October to November 2017 in four palliative care services. Patients with advanced cancer and health care professionals (HCPs) were invited to individual interviews to determine the relevance, appropriateness and relative importance of the 30 items of the QLQ-C30 for evaluating the outcome of palliative care, and whether relevant additional issues should be included.
Results: A total of 48 patients and 35 HCPs participated. The most important dimensions selected were pain, physical functioning, sleeping difficulties, emotional functioning, nausea/vomiting, fatigue, social functioning, lack of appetite, role functioning and constipation. Qualitative data identified important additional issues not covered by the questionnaire such as satisfaction with care, emotions and psychological support, as well as linguistic issues in the dyspnea and constipation items.
Conclusions: The EORTC QLQ-C15-PAL showed good content validity in the assessment of symptoms and QOL of advanced cancer patients; therefore, we recommend the use of this questionnaire in palliative care in Chile. Dyspnea and constipation items were revised by the EORTC group. More research is needed to add a social dimension for a comprehensive assessment of patients’ QOL.
The spread of pandemic COVID-19 has created unprecedented need for information. The pandemic is the cause of significant mortality and with this the need for rapidly disseminated information for palliative care professionals regarding the prevalence of symptoms, their intensity, their resistance or susceptibility to symptom control and the mode of death for patients.
Methods: we undertook a systematic review of published evidence for symptoms in patients with COVID-19 (with a specific emphasis on symptoms at end of life) and on modes of death. Inclusion: prospective or retrospective studies detailing symptom presence and/or cause or mode of death from COVID-19.
Results: 12 papers met the inclusion criteria and gave details of symptom burden: four of these specifically in the dying and two detailed the cause or mode of death. Cough, breathlessness, fatigue and myalgia are significant symptoms in people hospitalised with COVID-19. Dyspnoea is the most significant symptom in the dying. The mode of death was described in two papers and is predominantly through respiratory or heart failure.
Conclusions: There remains a dearth of information regarding symptom burden and mode of death to inform decisions regarding end-of-life care in patients dying with COVID-19. Rapid data gathering on the mode of death and the profile of symptoms in the dying and their prevalence and severity in areas where COVID-19 is prevalent will provide important intelligence for clinicians. This should be done urgently, within ethical norms and the practicalities of a public health, clinical and logistical emergency.
Background: Symptom assessment is essential in palliative care, but holds challenges concerning implementation and relevance. This study aims to evaluate patients’ main symptoms and problems at admission to a specialist inpatient palliative care (SIPC) ward using physician proxy- and patient self-assessment, and aims to identify their prognostic impact as well as the agreement between both assessments.
Methods: Within 12 h after admission, palliative care specialists completed the Symptom and Problem Checklist of the German Hospice and Palliative Care Evaluation (HOPE-SP-CL). Patients either used the new version of the minimal documentation system for patients in palliative care (MIDOS) or the Integrated Palliative Care Outcome Scale (IPOS) plus the Distress Thermometer (DT).
Results: Between 01.01.2016–30.09.2018, 1206 patients were included (HOPE-SP-CL 98%; MIDOS 21%, IPOS 34%, DT 27%) where of 59% died on the ward. Proxy-assessment showed a mean HOPE-SP-CL Total Score of 24.6 ± 5.9 of 45. Most frequent symptoms/problems of at least moderate intensity were weakness (95%), needs of assistance with activities of daily living (88%), overburdening of family caregivers (83%), and tiredness (75%). Factor analysis identified four symptom clusters (SCs): (1) Deteriorated Physical Condition/Decompensation of Home Care, (2) Emotional Problems, (3) Gastrointestinal Symptoms and (4) Other Symptoms. Self-assessment showed a mean MIDOS Total Score of 11.3 ± 5.3 of 30, a mean IPOS Total Score of 32.0 ± 9.0 of 68, and a mean distress of 6.6 ± 2.5 of 10. Agreement of self- and proxy-assessment was moderate for pain ( = 0.438) and dyspnea ( = 0.503), fair for other physical ( = 0.297 to 0.394) and poor for psychological symptoms ( = 0.101 to 0.202). Multivariate regression analyses for single symptoms and SCs revealed that predictors for dying on the SIPC ward included impaired ECOG performance status, moderate/severe dyspnea, appetite loss, tiredness, disorientation/confusion, and the SC Deteriorated Physical Condition/Decompensation of Home Care.
Conclusion: admissions to a SIPC ward are mainly caused by problems impairing mobility and autonomy. Results demonstrate that implementation of self- and reliability of proxy- and self-assessment is challenging, especially concerning non-physical symptoms/problems. We identified, specific symptoms and problems that might provide information needed for treatment discussions regarding the medical prognosis.
Objective: Grief reactions in bereaved caregivers of cancer patients have been identified individually as distinct prolonged grief disorder (PGD)- and major depressive disorder (MDD)-symptom trajectories, but no research has examined whether patterns of change (trajectories) for PGD and MDD symptoms synchronize during bereavement. We conducted a secondary analysis study to investigate the construct distinctiveness of PGD and MDD by simultaneously identifying and examining similarities and differences between bereaved caregivers’ PGD- and depressive-symptom trajectories from immediately postloss through 2 years later.
Methods: PGD and depressive symptoms were measured for 849 cancer patients’ caregivers over their first 2 years of bereavement using 11 grief-symptom items of the Prolonged Grief-13 scale (P-11) and the Center for Epidemiologic Studies-Depression (CES--D) scale, respectively. PGD- and depressive-symptom trajectories were identified using latent class growth analysis with continuous latent-class indicators (total PG-11 and CES-D scores). Concordance of caregiver participants’ membership in PGD- and depressive-symptom trajectories was examined by a percentage and a kappa value.
Results: Five distinct symptom trajectories were identified for both PGD and MDD, with four shared trajectories (endurance, transient-reaction, resilience, and prolonged-symptomatic) having different prevalence rankings. Nonetheless, unique trajectories were identified for PGD (potential recurrence) and depressive symptoms (chronically distressed), respectively. Concordance between membership in PGD- and depressive-symptom trajectories was moderate (61.3%, kappa [95% CI]: 0.49 [0.44, 0.53]).
Conclusion: GD and MDD are related but distinct constructs indicated by the unique trajectories identified for each, different prevalence rankings for PGD- and depressive-symptom trajectories, and moderate concordance between membership in PGD- and depressive-symptom trajectories, respectively.
Background: Previous studies suggest that the symptomatology threshold (i.e. the level and types of symptoms) for a referral to specialized palliative care might differ for doctors in different parts of the healthcare system; however, it has not yet been investigated.
Aim: To investigate if the number and level of symptoms/problems differed for patients referred from the primary and secondary healthcare sectors (i.e. general practitioner versus hospital physician).
Setting/participants: Adult cancer patients registered in the Danish Palliative Care Database who reported their symptoms/problems at admittance to specialized palliative care between 2010 and 2017 were included. Ordinal logistic regression analyses were performed with each symptom/problem as outcome to study the association between referral sector and symptoms/problems, controlled for the effect of gender, age, cancer diagnosis and the specialized palliative care service referred to.
Results: The study included 31,139 patients. The average age was 69 years and 49% were women. Clinically neglectable associations were found between referral sector and pain, appetite loss, fatigue, number of symptoms/problems, number of severe symptoms/problems (odds ratios between 1.05 and 1.20, all p < 0.05) and physical functioning (odds ratio = 0.81 (inpatient care) and 1.32 (outpatient), both p < 0.05). The remaining six outcomes were not significantly associated with referral sector.
Conclusion: Differences across healthcare sectors in, for example, competences and patient population did not seem to result in different symptomatology thresholds for referring patients to palliative care since only small, and probably not clinically relevant, differences in symptomatology was found across referral sectors.
PURPOSE: The majority of pediatric cancer deaths occur in low- and middle-income countries (LMICs). Pediatric palliative care (PPC) focuses on relieving physical, psychosocial, and spiritual suffering throughout the continuum of cancer care and is considered integral to cancer care for children in all settings. There is limited evidence from LMICs about the characteristics, symptoms, and outcomes of children with cancer who receive PPC, which is needed to define the global need and guide the development of these services.
METHODS: This retrospective review of clinical records of children who received PPC was conducted during a pilot project (January 2014-August 2015) that implemented a PPC team at a tertiary hospital in Dhaka, Bangladesh. Clinical data on diagnosis, symptoms, treatment status, deaths, and key palliative care interventions were collected and analyzed using descriptive statistics.
RESULTS: There were 200 children who received PPC during the pilot project. The most common diagnoses were acute lymphoblastic leukemia (62%) and acute myeloid leukemia (11%). Psychosocial support for children (n = 305; 53%) and management of physical symptoms (n = 181; 31%) were the most common types of interventions provided. The most frequently recorded symptoms were pain (n = 60; 30%), skin wounds (n = 16; 8%), and weakness (n = 9; 5%). The most common medications prescribed were morphine (n = 32) and paracetamol (n = 21).
CONCLUSION: A hospital-based PPC service addresses pain and symptom concerns as well as psychosocial needs for children with cancer and their families in a setting where resources are limited. Health care facilities should incorporate palliative care into the care of children with cancer to address the needs of children and their families.
Objective: Palliative care (PC) aims to improve patients' and families' quality of life through an approach that relieves physical, psychosocial, and spiritual suffering, although the latter continues to be under-assessed and under-treated. This study aimed to describe the prevalence of physical, psychosocial, and hope assessments documented by a PC team in the first PC consultation.
Method: The retrospective descriptive analysis of all first PC consultations registered in our anonymized database (December 2018–January 2020), searching for written documentation regarding (1) Edmonton Symptom Assessment Scale (ESAS) physical subscale (pain, tiredness, nausea, drowsiness, appetite, shortness of breath, constipation, insomnia, and well-being), (2) the single question “Are you depressed?” (SQD), (3) the question “Do you feel anxious?” (SQA), (4) feeling a burden, (5) hope-related concerns, (6) the dignity question (DQ), and (7) will to live (WtL).
Results: Of the 174 total of patients anonymously registered in our database, 141 PC home patients were considered for analysis; 63% were male, average age was 70 years, the majority had malignancies (82%), with a mean performance status of 52%. Evidence of written documentation was (1) ESAS pain (96%), tiredness (89%), nausea (89%), drowsiness (79%), appetite (89%), shortness of breath (82%), constipation (74%), insomnia (72%), and well-being (52%); (2) the SQD (39%); (3) the SQA (11%); (4) burden (26%); (5) hope (11%); (6) the DQ (33%); and (7) WtL (33%). Significant differences were found between the frequencies of all documented items of the ESAS physical subscale (29%), and all documented psychosocial items (SQD + SQA + burden + DQ) (1%), hope (11%), and WtL (33%) (p = 0.0000; p = 0.0005; p = 0.0181, respectively).
Significance of results: There were differences between documentation of psychosocial, hope, and physical assessments after the first PC consultation, with the latter being much more frequent. Further research using multicenter data is now required to help identify barriers in assessing and documenting non-physical domains of end-of-life experience.
Despite significant advances in heart failure (HF) treatment, HF remains a progressive, extremely symptomatic, and terminal disease with a median survival of 2.1 years after diagnosis. HF often leads to a constellation of symptoms, including dyspnea, fatigue, depression, anxiety, insomnia, pain, and worsened cognitive function. Palliative care is an approach that improves the quality of life of patients and their caregivers facing the problems associated with life-threatening illness and therefore is well suited to support these patients. However, historically, palliative care has often focused on supporting patients with malignant disease, rather than a progressive chronic disease such as HF. Predicting mortality in patients with HF is challenging. The lack of obvious transition points in disease progression also raises challenges to primary care providers and specialists to know at what point to integrate palliative care during a patient's disease trajectory.
Although therapies for HF often result in functional and symptomatic improvements including health-related quality of life (HRQL), some patients with HF do not demonstrate these benefits, including those patients with a preserved ejection fraction. Provision of palliative care for patients with HF requires an understanding of HF pathogenesis and common medications used for these patients, as well as an approach to balancing life-prolonging and HRQL care strategies. This review describes HF and current targeted therapies and their effects on symptoms, hospital admission rates, exercise performance, HRQL, and survival. Pharmacological interactions with and precautions related to commonly used palliative care medications are reviewed. The goal of this review is to equip palliative care clinicians with information to make evidence-based decisions while managing the balance between optimal disease management and patient quality of life.
Context: Although it is well known that patients with advanced pancreatic cancer (PC) experience significant symptom burden, few strategies for effective symptom intervention are available for them.
Objectives: To investigate the efficacy of minocycline, an anti-inflammatory agent, for symptom reduction in patients with advanced PC.
Methods: We conducted Phase II, randomized, and placebo-controlled trial to obtain preliminary estimates of the effects on symptom reduction with 100 mg of minocycline or placebo given twice a day. Eligible patients had diagnosed advanced PC and were scheduled for standard chemotherapy. Patient-reported symptoms were measured weekly during the eight-week trial using the MD Anderson Symptom Inventory (MDASI) module in patients with gastrointestinal cancer. The primary outcome measure was the area under the curve values of the five most severe symptoms in the two arms.
Results: Of the 44 patients recruited, 31 (71%) were evaluable for the primary efficacy analysis, with 18 received minocycline and 13 placebo. Fatigue, pain, disturbed sleep, lack of appetite, and drowsiness were the most severe symptoms reported by both groups. No significant differences in area under the curve values over time between the study arms were found for the composite MDASI score or single-item scores of the five most severe MDASI items. No treatment-related deaths were reported, and no Grade 3–4 toxicities were observed.
Conclusion: Minocycline is safe for use in patients receiving treatment for PC. There is no observed symptom reduction with minocycline on the major symptom burden associated with advanced PC compared with placebo. Attrition because of rapid disease progression impacted the study significantly.
Context: Patients with end-stage renal disease undergoing dialysis experience multiple concurrent symptoms. These symptoms cluster together and have negative impacts on patient outcomes. However, information on changes in symptom clusters over time is limited.
Objectives: This longitudinal study examined the stability of symptom clusters and their impacts on health-related quality of life and functional status over a period of one year.
Methods: Eligibility criteria were patients diagnosed with end-stage renal disease; had received dialysis consecutively for at least three months; and had given written informed consent. Dialysis Symptom Index, Kidney Disease Quality of Life 36, and Karnofsky Performance Status Scale were used to evaluate the impacts of symptom clusters and outcomes. Exploratory factor analyses and multiple regression analyses were used to determine symptom clusters and their associations with patient outcomes.
Results: Among the 354 recruited patients, 271 completed the 12-month assessment. Four symptom clusters were identified across the three assessments, namely, uremic, gastrointestinal, skin, and emotional. Within each cluster, the specific symptoms were varied. The uremic symptom cluster accounted for the largest amount of variability. Across the three assessments, a higher uremic cluster factor score was associated with poorer physical well-being, whereas a higher emotional cluster factor score was consistently associated with poorer mental well-being.
Conclusion: Symptoms in patients on dialysis clustered in relatively stable patterns. The four symptom clusters identified had consistent negative effects on various aspects of patients' well-being. Our findings suggest the need for ongoing symptom assessment and early recognition of symptoms that may contribute to adverse patient outcomes.
Heart failure (HF), a clinical syndrome with variable trajectory has become more common. As people with HF experience functional decline during periods of deterioration in their HF status, or with aging, their needs for palliative care increase. This review considers the palliative aspects of evidence-based HF care, which benefit patients while also addressing the underlying etiology of the HF. We also identify symptoms common to patients with HF and management beyond evidence-based HF care. Prognostic models and tools to identify patients appropriately evaluated by HF specialty experts might help clinicians understand the patient's status. Rather than trying to identify a point at which palliative care should be included in care for a patient with HF, we suggest that identifying specific needs of the patient and family is a better way to target palliative care interventions. We review available publications that have explored integration of palliative care into HF care, and propose an outpatient clinic model that assesses needs and symptoms and directs HF specialist or palliative care based on this assessment.
Symptom relief is fundamental to palliative care. Aboriginal and Torres Strait Islander (Indigenous) Australians are known to experience inequities in health care delivery and outcomes, but large-scale studies of end-of-life symptoms in this population are lacking. We compared symptom-related distress among Indigenous and non-Indigenous Australian patients in specialist palliative care using the multi-jurisdictional Palliative Care Outcomes Collaboration dataset. Based on patient-reported rating scale responses, adjusted relative risks (aRRs) stratified by care setting were calculated for occurrence of (i) symptom-related moderate-to-severe distress and worsening distress during a first episode of care and (ii) symptom-related moderate-to-severe distress at the final pre-death assessment. The p-value significance threshold was corrected for multiple comparisons. First-episode frequencies of symptom-related distress were similar among Indigenous (n = 1180) and non-Indigenous (n = 107,952) patients in both inpatient and community settings. In final pre-death assessments (681 Indigenous and 67,339 non-Indigenous patients), both groups had similar occurrence of moderate-to-severe distress when care was provided in hospital. In community settings, Indigenous compared with non-Indigenous patients had lower pre-death risks of moderate-to-severe distress from overall symptom occurrence (aRR 0.78; p = 0.001; confidence interval [CI] 0.67-0.91). These findings provide reassurance of reasonable equivalence of end-of-life outcomes for Indigenous patients who have been accepted for specialist palliative care.
Introduction: Malignant fungating wounds (MFWs), non-healing wounds caused by aggressive proliferation of malignant tumors, afflict 5%-14.5% of patients with advanced cancer. We conducted an integrative review to evaluate the level of evidence of peer-reviewed literature published from 2000 to 2019 on symptoms of MFWs, and the impact of the symptoms on functional performance among patients with advanced cancer.
Methods: Four electronic databases were searched and 1506 articles were retrieved. A total of 1056 abstracts were screened for relevance and a full review of the 26 articles was performed. A total of 12 articles met inclusion criteria. An established quality assessment tool was used to rate the quality of the included studies.
Results: The overall quality of the included 12 studies was adequate. This integrative review of the literature provided strong evidence that patients with MFWs suffered multiple symptoms, including pain, odor, exudate, bleeding, pruritus, perceived wound status, perceived bulk effect and lymphedema. Quantitative research was not able to capture the occurrence and characteristics of all the identified symptoms. There was a lack of quantitative research on the impact of MFWs and symptoms on patients' functional performance. Yet, qualitative studies provided vivid description of how the symptoms negatively affected patients' functional performance. Future research should develop a clinical tool that enables the comprehensive assessment of symptoms of MFWs. Well-designed quantitative research is needed to delineate the impact of symptoms of MFWs on patients' functional performance to ensure quality palliative care.
OBJECTIVES: Our aim was to (1) describe the clinical characteristics and symptoms of people diagnosed with dementia at the time of admission to inpatient palliative care; and (2) compare the nature and severity of these palliative care–related problems to patients with other chronic diseases.
DESIGN: Descriptive study using assessment data on point of care outcomes (January 1, 2013, to December 31, 2018).
SETTING: A total of 129 inpatient palliative care services participating in the Australian Palliative Care Outcomes Collaboration.
PARTICIPANTS: A total of 29,971 patients with a primary diagnosis of dementia (n = 1,872), lung cancer (n = 19,499), cardiovascular disease (CVD, n = 5,079), stroke (n = 2,659), or motor neuron disease (MND, n = 862).
MEASUREMENTS: This study reported the data collected at the time of admission to inpatient palliative care services including patients' self-rated levels of distress from seven common physical symptoms, clinician-rated symptom severity, functional dependency, and performance status. Other data analyzed included number of admissions, length of inpatient stay, and palliative care phases.
RESULTS: At the time of admission to inpatient palliative care services, relative to patients with lung cancer, CVD, and MND, people with dementia presented with lower levels of distress from most symptoms (odds ratios [ORs] range from .15 to .80; P < .05 for all) but higher levels of functional impairment (ORs range from 3.02 to 8.62; P < .001 for all), and they needed more assistance with basic activities of daily living (ORs range from 3.83 to 12.24; P < .001 for all). The trends were mostly the opposite direction when compared with stroke patients. Patients with dementia tended to receive inpatient palliative care later than those with lung cancer and MND.
CONCLUSION: The unique pattern of palliative care problems experienced by people with dementia, as well as the skills of the relevant health services, need to be considered when deciding on the best location of care for each individual. Access to appropriately trained palliative care clinicians is important for people with high levels of physical or psychological concerns, irrespective of the care setting or diagnosis.
Hospital palliative care is an essential part of the COVID-19 response but data are lacking. We identified symptom burden, management, response to treatment, and outcomes for a case series of 101 in-patients with confirmed COVID-19 referred to hospital palliative care. Patients (64 male, median [IQR] age 82 [72-89] years, Elixhauser Comorbidity Index 6 [2-10], Australian-modified Karnofsky Performance Status 20 [10-20]), were most frequently referred for end of life care or symptom control. Median [IQR] days from hospital admission to referral was 4 [1-12] days. Most prevalent symptoms (n) were breathlessness (67), agitation (43), drowsiness (36), pain (23) and delirium (24). Fifty-eight patients were prescribed a subcutaneous infusion. Frequently used medicines (median-maximum dose/24h) were opioids (morphine, 10-30mg; fentanyl, 100-200mcg; alfentanil 500-1000 mcg) and midazolam (10-20mg). Infusions were assessed as at least partially effective for 40/58 patients, while 13 patients died before review. Patients spent a median [IQR] of 2 [1-4] days under the palliative care team, who made 3 [2-5] contacts across patient, family and clinicians. At March 30 2020, 75 patients had died, 13 been discharged back to team, home or hospice, and 13 continued to receive inpatient palliative care. Palliative care is an essential component to the COVID-19 response, and teams must rapidly adapt with new ways of working. Breathlessness and agitation are common but respond well to opioids and benzodiazepines. Availability of subcutaneous infusion pumps is essential. An international minimum dataset for palliative care would accelerate finding answers to new questions as the COVID-19 pandemic develops.
Background: End-stage chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF) and chronic renal failure (CRF) are characterized by a high burden of daily symptoms that, irrespective of the primary organ failure, are widely shared.
Aims: To evaluate whether and to which extent symptom-based clusters of patients with end-stage COPD, CHF and CRF associate with patients’ health status, mobility, care dependency and life-sustaining treatment preferences.
Methods: 255 outpatients with a diagnosis of advanced COPD (n = 95), advanced CHF (n = 80) or CRF requiring dialysis (n = 80) were visited in their home environment and underwent a multidimensional assessment: clinical characteristics, symptom burden using Visual Analog Scale (VAS), health status questionnaires, timed “Up and Go” test, Care Dependency Scale and willingness to undergo mechanical ventilation or cardiopulmonary resuscitation. Three clusters were obtained applying K-means cluster analysis on symptoms’ severity assessed via VAS. Cluster characteristics were compared using non-parametric tests.
Results: Cluster 1 patients, with the least symptom burden, had a better quality of life, lower care dependency and were more willing to accept life-sustaining treatments than others. Cluster 2, with a high presence and severity of dyspnea, fatigue, cough, muscle weakness and mood problems, and Cluster 3, with the highest occurrence and severity of symptoms, reported similar care dependency and life-sustaining treatment preferences, while Cluster 3 reported the worst physical health status.
Discussion: Symptom-based clusters identify patients with different health needs and might help to develop palliative care programs.
Conclusion: Clustering by symptoms identifies patients with different health status, care dependency and life-sustaining treatment preferences.
Objective: The aim of this study was to characterize nutritional status, body composition, oxidative stress, and inflammatory activity and to determine the possible associations between nutritional status and clinical variables in advanced cancer patients.
Method: This was a cross-sectional study of 46 elderly cancer patients under palliative care with a prognosis of 30 days or more. Nutritional status, food intake, anthropometry, body composition (deuterium oxide method), metabolic profile, inflammation damage (C-reactive protein), oxidative damage (8-hydroxy-2’-deoxyguanosine), and symptom intensity were evaluated.
Results: Among elderly cancer patients, 36.9% were malnourished or at risk of malnutrition. Systemic inflammation was detected, with a correlation between worse nutritional status and higher C-reactive protein levels (p < 0.01, r= -0.57), while lower lean mass (p < 0.01, r = 0.62) and higher fat mass percentages (p < 0.01, r = 0.62) correlated with higher levels of 8-hydroxy-2’-deoxyguanosine. Furthermore, daily energy (n = 25; 57.4%) and protein intake (n = 24; 52.2%) were lower than recommended in more than half the patients. The most prevalent symptoms were anxiety, impairment of well-being, drowsiness, tiredness, and lack of appetite.
Conclusions: Despite preserved functionality, patients already had clinical and laboratory changes that, together with inadequate food intake, risk of malnutrition, systemic inflammation, and the presence of uncontrolled symptoms, alerted to the importance of an early and comprehensive palliative approach.
Aims: To examine the impact of palliative care on acute care hospitalizations, survival, symptoms, and quality of life (QOL) in patients with advanced heart failure.
Methods and results: We conducted a systematic search of publications through CENTRAL, CINAHL, EMBASE, and MEDLINE originally up to July 2017, and then updated to June 2019. The study was registered (PROSPERO ID: CRD42017069685) prior to its initiation. Randomized controlled trials (RCTs) were included that tested an interdisciplinary palliative care intervention (compared to usual care) primarily in a heart failure population. Main outcomes assessed were hospitalizations, mortality, QOL, and symptom burden. Ten independent RCTs were selected, representing a total of 1050 participants (921 with a diagnosis of heart failure). Compared with usual care, palliative care interventions were associated with a substantial reduction in hospitalizations [odds ratio 0.56 (0.33–0.94); four trials; I2 = 27%], modest improvement in QOL [standardized mean difference (SMD) 0.25; 95% confidence interval (CI) 0.06–0.45; seven trials; I2 = 15%], and modest reduction in symptom burden (SMD -0.29; 95% CI -0.54–0.03; three trials; I2 = 15%). There was no clear adverse impact on mortality. Most studies had methodological limitations that increased the risk of biases.
Conclusion: Compared to usual care, palliative care interventions substantially reduce hospitalizations, with no clear adverse effect on survival. Effects on QOL and symptom burden appear to be modest, and indicate that further efforts to improve these patient centred outcomes are needed.
CONTEXT: Symptom management is essential in the end of life care of long-term care facility residents.
OBJECTIVES: To study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life.
METHODS: A post mortem survey in Belgium, the Netherlands and Finland: staff and family carers completed the "End-Of-Life in Dementia - Comfort Assessment in Dying" scale (EOLD-CAD), rating 14 symptoms on a 1 to 3-point scale. Higher scores reflect better comfort. We calculated mean paired differences in symptom, subscale and total scores at a group level and interrater agreement and percentage of perfect agreement at a resident level.
RESULTS: Mean staff scores significantly reflected better comfort than those of family carers for the total End-of-Life in Dementia—Comfort Assessment in Dying (31.61 vs. 29.81; P < 0.001) and the physical distress (8.64 vs. 7.62; P < 0.001) and dying symptoms (8.95 vs. 8.25; P < 0.001) subscales. No significant differences were found for emotional distress and well-being. The largest discrepancies were found for gurgling, discomfort, restlessness, and choking for which staff answered not at all, whereas the family carer answered a lot, in respectively, 9.5%, 7.3%, 6.7%, and 6.1% of cases. Inter-rater agreement ranged from 0.106 to 0.204, the extent of perfect agreement from 40.8 for lack of serenity to 68.7% for crying.
CONCLUSION: There is a need for improved communication between staff and family and discussion about symptom burden in the dying phase in long-term care facilities.