Background: Cancer patients experience multiple symptoms throughout the course of the disease. We aimed to provide a comprehensive analysis of the symptom burden in patients with advanced cancer at admission to specialist palliative care (PC) services and seven days later to estimate the immediate impact of PC intervention.
Patient and methods: The analysis was based on an observational, prospective, multicenter study (named DEMETRA) conducted in Italy on new patients accessing network specialist PC centers during the period May 2017-November 2017. The prevalence and intensity of symptoms were assessed at baseline and after seven days using three tools including the Edmonton Symptom Assessment System (ESAS).
Results: Five PC centers recruited 865 cancer patients. Thirty-three different symptoms were observed at the baseline, the most frequent being asthenia (84.9%) and poor well-being (71%). The intensity of the most frequent symptoms according to ESAS ranged from 5.5 for asthenia to 3.9 for nausea. The presence and intensity of physical symptoms increased with increasing levels of anxiety and depression. After seven days, prevalence of nausea and breathlessness as well as intensity of almost all symptoms significantly decreased.
Conclusions: The study confirmed the considerable symptom burden of patients with advanced cancer. PC intervention has significantly reduced the severity of symptoms, despite the patients' advanced disease and short survival.
BACKGROUND: Well detection of the symptoms and signs of dying patients is essential for providing proper palliative care. Our goal is to evaluate the predominant symptoms and compare the changes in dying patients with digestive tract cancer in Japan, South Korea, and Taiwan.
METHODS: A total of 1057 cancer patients aged 18 years or older admitted in palliative care units with locally advanced or metastatic gastroesophageal, colorectal, and pancreaticobiliary cancer were enrolled from January 2017 to March 2019. The severity of physical and psychological symptoms and signs assessed by physicians and/or nurses upon admission, 1 week after admission, and within 3 days of death, was compared according to cancer type and country of origin.
RESULTS: Among the 338 gastroesophageal, 358 pancreaticobiliary, and 361 colorectal cancer patients, 894 (93.1%) died during the observation period. Fatigue was the most severe symptom in all cancer groups before dying. Dyspnea, fatigue, drowsiness, and ascites improved after hospitalization albeit they worsened prior to death. In particular, ascites was a marked symptom in patients with pancreaticobiliary cancer. Delirium and hallucination gradually worsened during the period leading to death. Differences in manifestations with respect to the country of origin were not significant.
CONCLUSION: We identified the most prevalent signs and symptoms in patients from East Asia who were dying from digestive tract cancers. Proper management, based on these prevalent signs and symptoms during the dying period, plays a vital role in providing adequate palliative care.
OBJECTIVE: To report the clinical and demographic characteristics of advanced cervical cancer patients referred to the palliative care service (PC) at a major cancer center in Mexico.
METHODS: This is a retrospective cohort study of patients with advanced CC referred to the PC of INCan, between January 2011 to December 2015. Demographic and clinical characteristics at the time of admission to the INCan, time to referral to palliative care, initial ESAS evaluation and follow-up.
RESULTS: 359 patients were included, median age 51 years, poor, low education. Most patients (90%), received tumor specific treatment, presence of nephrostomies and other tumor related complication was frequent. Median time to referral was 335 days, more than 50% had 5 or more symptoms, pain and fatigue were the most prevalent.
CONCLUSIONS: Advanced CC patients have a high burden of symptoms; PC is only considered at the end of life. Efforts for an early referral to PC should be made.
Objectives: Palliative care (PC) has gained rising attention in a holistic treatment approach to chronic heart failure (HF). It is unclear whether there is a need for PC in left ventricular assist device (LVAD) patients or heart transplant recipients.
Methods: In a cross-sectional explorative pilot study, outpatients after heart transplantation (HTx, n = 69) or LVAD implantation (n = 21) underwent screening for palliative care (PC) need and evaluation of symptom burden and psychological distress using tools that emanated from palliative cancer care.
Results: The ‘Palliative Care Screening Tool for Heart Failure Patients’ revealed scores of 4.3 ± 2.2 in HTx and 6.0 ± 2.1 in LVAD patients (max. 12 points, P = 0.003), indicating the need for PC (=5 points) in 32% of HTx and 67% of LVAD patients. Symptom burden, as assessed by MIDOS (‘Minimal Documentation System for Palliative Care’) scores was substantial in both groups (4.9 ± 4.7 in HTx vs 6.6 ± 5.3 in LVAD, max. 30 points, P = 0.181). ‘Fatigue’, ‘weakness’ and ‘pain’ were the most frequent symptoms. Using the ‘Distress-Thermometer’, ‘clinically relevant’ distress was detected in 57% of HTx and 47% of LVAD patients (P = 0.445). In the PHQ-4 (‘4-Item Patient Health Questionnaire’), 45% of LVAD patients, compared to only 10% of HTx patients, reported mild symptoms of anxiety and depression.
Conclusions: Findings reveal substantial need for PC in LVAD patients and, to a lesser extent, in heart transplant recipients, suggesting that multi-disciplinary PC should be introduced into routine aftercare.
As the health status of patients living with multiple chronic conditions declines, these patients experience a variety of symptoms (eg, respiratory, gastrointestinal, psychological symptoms; overall symptoms of decline; and pain). Respiratory symptoms can include dyspnea, cough, and excessive upper respiratory tract secretions. Gastrointestinal symptoms can include nausea and vomiting, constipation, and malignant bowel obstruction. Overall symptoms include anorexia, cachexia, and fatigue. Psychological symptoms may manifest as depression, anxiety, or delirium. For patients with chronic pain and progressive disease, it is important to identify the etiology and type of pain (ie, visceral, somatic, neuropathic) because management differs. An evaluation of total pain should consider the various domains of suffering, including physical, psychological, and spiritual suffering. It is imperative to attempt to identify the underlying causes of the symptoms and address it if possible. It also is important to relieve symptoms using nonpharmacologic and pharmacologic approaches. In patients unable to self-report symptoms, family members and/or caregivers can provide insight into the condition of the patient.
BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a fatal disease requiring palliative care. End-of-life care has been well studied in patients with incurable cancer, but less is known about the quality of such care for patients with ALS.
AIM: To study whether the quality of end-of-life care the last week in life for patients dying from ALS differed compared to patients with cancer in terms of registered symptoms, symptom management and communication.
DESIGN: This retrospective comparative registry study used data from the Swedish Registry of Palliative Care for 2012-2016. Each patient with ALS (n = 825) was matched to 4 patients with cancer (n = 3300).
RESULTS: Between-group differences in assessments for pain and other symptoms were significant (p < 0.01), and patients with ALS had fewer as-needed injection drugs prescribed than patients with cancer. Patients with ALS also had dyspnoea and anxiety significantly more often than patients with cancer. There was no significant difference in communication about transition to end-of-life care between the two groups. Patients dying from ALS received artificial nutrition on their last day of life significantly more often than patients with cancer.
CONCLUSIONS: The results indicate that patients with ALS receive poorer end-of-life care than patients dying from cancer in terms of validated symptom assessments, prescription of as-needed drugs, and timely cessation of artificial nutrition. Educational efforts seem needed to facilitate equal care of dying patients, regardless of diagnosis.
Palliative chemotherapy (PC) is associated with a modest survival benefit in patients with incurable esophageal and gastric cancer; however, changes in symptom profile during treatment are not well described. Understanding the trajectory of symptoms during treatment may lead to improved care and facilitate shared decision making. In this study, we address this knowledge gap among all patients receiving PC in the Canadian province of Ontario.
OBJECTIVES: To describe changes in the occurrence of restricting symptoms at the end of life from 1998 to 2019 and compare these changes according to the condition leading to death.
DESIGN: Prospective longitudinal study.
SETTING: Greater New Haven, CT.
PARTICIPANTS: A total of 665 decedents from a cohort of 754 community-living persons, 70 years or older.
MEASUREMENTS: The occurrence of 16 restricting symptoms was ascertained during monthly interviews. Information on the conditions leading to death was obtained from death certificates and comprehensive assessments that were completed every 18-months. For each restricting symptom, adjusted rates (per 100 person-months) were calculated separately for six multiyear time intervals.
RESULTS: From 1998 to 2019, rates decreased for five (31.3%) restricting symptoms (difficulty sleeping; chest pain or tightness; shortness of breath; cold or flu symptoms; and nausea, vomiting, or diarrhea), increased for three (18.8%: arm or leg weakness; urinary incontinence; and memory or thinking problem), and changed little for the other eight (50.0%: poor eyesight; anxiety; depression; musculoskeletal pain; fatigue; dizziness or unsteadiness; frequent or painful urination; and swelling in feet or ankles). The decrease in rates was most pronounced for shortness of breath, with a reduction from 15.0 (95% credible interval = 11.7-18.6) in 1998 to 2001 to 8.2 (95% credible interval = 5.9-10.5) in 2014 to 2019, yielding a rate ratio (95% credible interval) of 0.92 (0.86-0.98). When evaluated according to the condition leading to death, the results were similar, with 10 of the 13 statistically significant rate ratios representing decreases in rates over time and only 3 representing increases.
CONCLUSION: The occurrence of most restricting symptoms at the end of life has been decreasing or stable over the past two decades. These results suggest that end-of-life care has been improving, although additional efforts will be needed to further reduce symptom burden at the end of life.
STUDY AIMS: 1) To characterize distinct profiles of cancer caregivers' physical and mental health during the end-of-life caregiving period; 2) to identify the background and antecedent factors associated with the distinct profiles of caregivers; 3) to determine the relevance of caregiver profiles to the risk for developing prolonged grief symptoms.
DESIGN & METHODS: This study was a secondary analysis of spouses/partners (n = 198) who participated in the Cancer Caregiver Study. Latent profile mixture modeling was used to characterize caregiver health profiles from data collected prior to their spouse's death. Regression analyses were used to determine the impact of caregiver health profiles on the risk of developing prolonged grief symptoms (PG-13 scale).
RESULTS: Two health profiles were identified, one of which was comprised of a minority of caregivers (n = 49; 25%) who exhibited higher anxiety and depressive symptoms, greater health impact from caregiving, more self-reported health problems, and greater difficulty meeting physical demands of daily activities. Caregivers who were observed in this poorer health profile had significantly lower levels of active coping (p < 0.001) in adjusted models. Additionally, according to subsequent bereavement data, caregivers' preloss health profile was a significant predictor of developing prolonged grief symptoms (p = 0.018), controlling for caregivers' age (p = 0.040) and amount of active coping (p = 0.049), and there was a mediating effect of caregiver health on the relationship between active coping and prolonged grief symptoms.
CONCLUSIONS: Caregiving and bereavement should not be considered separately; caregivers adapt to bereavement with the resources and coping attained throughout the life course, culminating in the experience of providing end-of-life care. Interventions aimed at supporting caregivers and bereaved persons should focus on maintaining physical and mental health during stressful life transitions, and especially during the period in which they are providing care to a spouse at end-of-life.
Background: This study examined phenomenological manifestations of delirium in advanced cancer patients by examining the factor structure of the Delirium Rating Scale-Revised-98 (DRS-R-98) and profiles of delirium symptoms.
Methods: Ninety-three patients with advanced cancer admitted to inpatient palliative care units in South Korea were examined by psychiatrists using the DRS-R-98 and the Confusion Assessment Method (CAM). The factor structure of the DRS-R-98 was examined by exploratory structural equation modelling analysis (ESEM) and profiles of delirium were examined by latent profile analysis (LPA).
Results: CAM-defined delirium was present in 66.6% (n = 62) of patients. Results from the ESEM analysis confirmed applicability of the core and noncore symptom factors of the DRS-R-98 to advanced cancer patients. LPA identified three distinct profiles of delirium characterizing the overall severity of delirium and its core and noncore symptoms. Class 1 (n = 55, 59.1%) showed low levels of all delirium symptoms. Class 2 (n = 17, 18.3%) showed high levels of core symptoms only, whereas Class 3 (n = 21, 22.6%) showed high levels of both core and noncore symptoms except motor retardation.
Conclusions: Clinical care for delirium in advanced cancer patients may benefit from consideration of the core and noncore symptom factor structure and the three distinct phenomenological profiles of delirium observed in the present study.
Importance: The evidence for palliative care exists predominantly for patients with cancer. The effect of palliative care on important end-of-life outcomes in patients with noncancer illness is unclear.
Objective: To measure the association between palliative care and acute health care use, quality of life (QOL), and symptom burden in adults with chronic noncancer illnesses.
Data Sources: MEDLINE, Embase, CINAHL, PsycINFO, and PubMed from inception to April 18, 2020.
Study Selection: Randomized clinical trials of palliative care interventions in adults with chronic noncancer illness. Studies involving at least 50% of patients with cancer were excluded.
Data Extraction and Synthesis: Two reviewers independently screened, selected, and extracted data from studies. Narrative synthesis was conducted for all trials. All outcomes were analyzed using random-effects meta-analysis.
Main Outcomes and Measures: Acute health care use (hospitalizations and emergency department use), disease-generic and disease-specific quality of life (QOL), and symptoms, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy-Palliative Care scale (range, 0 [worst] to 184 [best]; minimal clinically important difference, 9 points) and symptoms translated to units of the Edmonton Symptom Assessment Scale global distress score (range, 0 [best] to 90 [worst]; minimal clinically important difference, 5.7 points).
Results: Twenty-eight trials provided data on 13 664 patients (mean age, 74 years; 46% were women). Ten trials were of heart failure (n = 4068 patients), 11 of mixed disease (n = 8119), 4 of dementia (n = 1036), and 3 of chronic obstructive pulmonary disease (n = 441). Palliative care, compared with usual care, was statistically significantly associated with less emergency department use (9 trials [n = 2712]; 20% vs 24%; odds ratio, 0.82 [95% CI, 0.68-1.00]; I2 = 3%), less hospitalization (14 trials [n = 3706]; 38% vs 42%; odds ratio, 0.80 [95% CI, 0.65-0.99]; I2 = 41%), and modestly lower symptom burden (11 trials [n = 2598]; pooled standardized mean difference (SMD), -0.12; [95% CI, -0.20 to -0.03]; I2 = 0%; Edmonton Symptom Assessment Scale score mean difference, -1.6 [95% CI, -2.6 to -0.4]). Palliative care was not significantly associated with disease-generic QOL (6 trials [n = 1334]; SMD, 0.18 [95% CI, -0.24 to 0.61]; I2 = 87%; Functional Assessment of Chronic Illness Therapy-Palliative Care score mean difference, 4.7 [95% CI, -6.3 to 15.9]) or disease-specific measures of QOL (11 trials [n = 2204]; SMD, 0.07 [95% CI, -0.09 to 0.23]; I2 = 68%).
Conclusions and Relevance: In this systematic review and meta-analysis of randomized clinical trials of patients with primarily noncancer illness, palliative care, compared with usual care, was statistically significantly associated with less acute health care use and modestly lower symptom burden, but there was no significant difference in quality of life. Analyses for some outcomes were based predominantly on studies of patients with heart failure, which may limit generalizability to other chronic illnesses.
Posttraumatic stress disorder (PTSD) and prolonged grief disorder (PGD) are well-documented in parentally bereaved adolescents. Whether or not the parent's death is perceived as traumatic may be influenced by several end-of-life-related factors. This study aimed to examine the associations between end-of-life-related factors, symptoms of posttraumatic stress disorder (PTSD), symptoms of prolonged grief disorder and PGD, and the association between PTSD and PGD. Mann-Whitney U tests and Spearman correlation were used to analyze the relationships between end-of-life-related factors, PTSD, and PGD. Regretting one's decision to be present or not present at the time of death resulted in a significant difference in self-reported scores for PTSD, but not PGD.
Introduction : L’anémie est un problème fréquemment rencontré chez les patients relevant des soins palliatifs. Elle peut être responsable de nombreux symptômes inconfortables comme l’asthénie, la dyspnée ou des douleurs. L’objectif de cette étude était d’analyser la prise en charge de l’anémie par les praticiens d’équipe mobile de soins palliatifs et d’unité de soins palliatifs.
Méthode : Une étude observationnelle, déclarative et descriptive, a été menée de septembre à décembre 2017, sur la base d’un questionnaire électronique, adressé aux médecins d’équipe mobile de soins palliatifs et d’unité de soins palliatifs en France métropolitaine. Le recueil concernait l’indication, le choix du traitement, la méthode de surveillance et le recours à des référentiels.
Résultats : Nous avons recueilli les réponses de 140 médecins. Parmi ces praticiens, 87 % traitaient l’anémie des patients relevant de soins palliatifs uniquement en cas de symptômes et 95 % n’avaient recours à aucun référentiel. Les symptômes amenant le plus à traiter l’anémie étaient la dyspnée et l’asthénie. Le traitement utilisé en première intention par 95 % des répondeurs était la transfusion de concentré de globules rouges, essentiellement pour le besoin d’une efficacité plus rapide.
Conclusion : Les praticiens ayant répondu à notre questionnaire ont déclaré en majorité ne pas avoir recours à des référentiels concernant la prise en charge de l’anémie, mais leurs pratiques se rapprochaient des rares recommandations et données disponibles sur le sujet. De nouvelles études sont nécessaires sur ce sujet et plus précisément sur l’utilisation des agents stimulants l’érythropoïèse et sur la correction des carences vitaminiques et martiales.
Les troubles cognitifs sont fréquents chez les patients atteints de sclérose en plaques, avec des degrés d’intensité divers. Ils peuvent impacter de manière significative la vie quotidienne et professionnelle des patients, ainsi que leur qualité de vie. Le dépistage de ces troubles est donc important et les neurologues doivent s’investir dans leur évaluation afin de proposer une prise en charge adaptée. Les liens entre cognition et comportement sont souvent intriqués. Il peut être utile de rappeler le vocabulaire neuropsychologique définissant les différents symptômes les plus souvent observés dans la sclérose en plaques. Ceci permet aussi de visiter clinique et anatomie. Nous proposons un lexique qui définit 118 termes susceptibles d’aider les neurologues dans la compréhension des troubles de la cognition et du comportement chez leurs patients, de faciliter leur écoute dans un entretien, de prescrire quand il le faut une expertise de première ligne ou plus spécialisée, de lire des travaux scientifiques où ces données sont de plus en plus citées et de communiquer en utilisant un vocabulaire commun.
BACKGROUND: Forty-five percent of hospice patients currently have a primary or secondary diagnosis of Alzheimer's disease or related disorders. However, few programs have focused specifically on assisting hospices in providing evidence-based symptom management to persons living with dementia (PLWD).
OBJECTIVE: To adapt and pilot the training component of Aliviado Dementia Care, a dementia symptom management quality improvement program originally developed for home healthcare, for use by social workers as part of the hospice interdisciplinary team.
DESIGN: A prospective pre-post design was utilized, measuring knowledge, confidence, and attitudes at baseline, and immediately and 1-month post-training. Analysis was performed using paired t-tests and repeated measures ANOVA.
SUBJECTS: Hospice social workers currently practicing in the United States with at least 1 year of experience.
MEASUREMENTS: The Dementia Symptom Knowledge Assessment and a post-training continuing education evaluation form.
RESULTS: Forty-six subjects were enrolled, of whom 26 completed the first post-test and 23 both post-tests. There was a poor baseline level of knowledge and confidence in caring for PLWD. Significant improvements occurred following training, particularly in implementing non-pharmacologic interventions for behavioral and psychological symptoms of dementia (BPSD) (16.64% increase, p < .0001) and confidence in managing behavioral symptoms (16.86%, p = .01) and depression (25.18%, p < .0001). Changes were maintained over time. All respondents were either very satisfied or satisfied with the quality and content of the program.
CONCLUSIONS: The training modules of Aliviado Dementia Care were successfully tailored for use by hospice social workers, showing significant improvement in knowledge and confidence in caring for behavioral symptoms in PLWD. Future work will examine whether the larger program, including this training, can subsequently improve patient outcomes in hospice.
BACKGROUND: In recent years there has been increasing attention for the prevalence and prevention of burnout among healthcare professionals. There is unclarity about prevalence of burnout in healthcare professionals providing palliative care and little is known about effective interventions in this area.
AIM: To investigate the prevalence of (symptoms of) burnout in healthcare professionals providing palliative care and what interventions may reduce symptoms of burnout in this population.
DESIGN: A systematic literature review based on criteria of the PRISMA statement was performed on prevalence of burnout in healthcare professionals providing palliative care and interventions aimed at preventing burnout.
DATA SOURCES: PubMed, PsycInfo and Cinahl were searched for studies published from 2008 to 2020. Quality of the studies was assessed using the method of Hawkers for systematically reviewing research.
RESULTS: In total 59 studies were included. Burnout among healthcare professionals providing palliative care ranged from 3% to 66%. No major differences in prevalence were found between nurses and physicians. Healthcare professionals providing palliative care in general settings experience more symptoms of burnout than those in specialised palliative care settings. Ten studies reported on the effects of interventions aimed at preventing burnout. Reduction of one or more symptoms of burnout after the intervention was reported in six studies which were aimed at learning meditation, improving communication skills, peer-coaching and art-therapy based supervision.
CONCLUSION: The range of burnout among healthcare professionals providing palliative care varies widely. Interventions based on meditation, communication training, peer-coaching and art-therapy based supervision have positive effects but long-term outcomes are not known yet.
PURPOSE: Understanding the end-of-life psychosocial needs of cancer patients at home is a knowledge gap. This study describes the trajectory of psychosocial symptoms in the last 6 months of life among cancer decedents who were receiving home care.
METHODS: Observational population-based cohort study of cancer decedents who were receiving home care services between 2007 and 2014. Decedents had to have at least one home care assessment in the last 6 months of life for inclusion. Outcomes were the presence of psychosocial symptoms (i.e., anxiety, loneliness, depression, social decline, caregiver distress, and cognitive decline) at each week before death.
RESULTS: Our cohort included 27,295 unique cancer decedents (30,368 assessments), of which 58% died in hospital. Fifty-six percent were older than 74, and 47% were female. The prevalence of all symptoms increased approaching death, except loneliness. Social decline (48%-78%) was the most prevalent psychosocial symptom, though loneliness was reported in less than 10% of the cohort. Caregiver distress rose over time from 15%-27%. A third of the cohort reported issues with cognitive impairment. Multivariate regression showed that physical symptoms such as uncontrolled pain, impairment in independent activities of daily living, and a high level of health instability all significantly worsened the odds of having a psychosocial symptom in the last 3 months of life.
CONCLUSION: In this large home care cancer cohort, trajectories of psychosocial symptoms worsened close to death. Physical symptoms, such as uncontrolled pain, were associated with having worse psychosocial symptoms at end of life.
OBJECTIVES: To (a) compare palliative care needs of lung cancer patients on their final admission to community-based and inpatient palliative care services; and (b) explore whether and how these care needs affect their utilisation of different palliative care services in the last days of life.
METHODS: Descriptive study involving 17,816 lung cancer patients who received the last episode of palliative care from specialist services and died between 1 January 2013 and 31 December 2018.
RESULTS: Both groups of patients admitted to community-based and inpatient palliative care services generally experienced relatively low levels of symptom distress, but high levels of functional impairment and dependency. "Unstable" versus "stable" palliative care phase (Odds ratio = 11.66; 95% Confidence Interval: 9.55-14.24), poorer functional outcomes and severe levels of distress from many symptoms predicted greater likelihood of use of inpatient versus community-based palliative care.
CONCLUSIONS: Most inpatient palliative care admissions are not associated with high levels of symptom severity. To extend the period of home care and rate of home death for people with lung cancer, additional investment is required to improve their access to sufficiently skilled palliative care staff, multi-disciplinary teams and 24-hour home support in community settings.