Background: Crises that occur in home hospice care affect family caregivers’ satisfaction with care and increase risk of disenrollment. Because hospice care focuses on achieving a peaceful death, understanding the prevalence and nature of crises that occur in this setting could help to improve end-of-life outcomes.
Objective: To ascertain the prevalence and nature of, as well as factors associated with crises in the home hospice setting as reported by family caregivers.
Design: A multiple-method approach was used. Content analysis was employed to evaluate semistructured interview responses collected from caregivers. Potential associations between crisis occurrence and caregiver and patient factors were examined.
Setting/Subjects: Family caregivers whose care recipients were discharged (dead or alive) from a nonprofit hospice organization.
Measurements: Participants were asked to identify any crisis—defined as a time of intense distress due to a physical, psychological, and/or spiritual cause—they or the patient experienced, while receiving home hospice care.
Results: Of the 183 participants, 76 (42%) experienced a perceived crisis, while receiving hospice care. Three types of crises emerged: patient signs and symptoms (n = 51, 67%), patient and/or caregiver emotional distress (n = 22, 29%), and caregiver burden (n = 10, 13%). Women were more likely than men (46% vs. 26%, p = 0.03) to report a crisis.
Conclusions: A large minority of caregivers report perceiving a crisis while their loved one was receiving home hospice care. Physical (symptoms), psychological (emotional distress) function, and caregiver burden constituted the crises reported. Further studies are needed to better understand and address these gaps in care.
The diagnosis of an aggressive, primary brain tumor is life altering for those affected and too often portends a poor prognosis. Despite decades of research, neither a cure nor even a therapy that reliably and dramatically prolongs survival has been found. Fortunately, there are a number of treatments that may prolong the life of select brain tumor patients although the symptom burden can sometimes be high. This article brings together neuro-oncologists, neurologists, and palliative care (PC) physicians to help shine a light on these diseases, their genetics, treatment options, and the symptoms likely to be encountered both from the underlying illness and its treatment. We hope to increase the understanding that PC teams have around these illnesses to improve care for patients and families.
Life-limiting conditions in children in specialized pediatric palliative care (PPC) are manifold. The “Together for Short Lives” (TfSL) association established four disease categories, which represent the most common illness trajectories. Better understanding the palliative care needs and symptoms of children within these TfSL groups will result in improved anticipation of clinical problems and tailored care. During this retrospective single-center cohort study, 198 children, adolescents, and young adults (CAYAs) were in PPC. Mean age at referral was 8.7 years (range 0.0–25.0), mean duration of care 355 days (range 1–2754). One hundred six (53.5%) CAYAs died during the study period. Sixty-five (32.8%) CAYAs were assigned to TfSL-1, 13 (6.6%) to TfSL-2, 49 (24.7%) to TfSL-3, and 71 (35.9%) to TfSL-4. Home visits were conducted on average every 9.6 days in TfSL-1, 18.9 days in TfSL-2, 31.7 days in TfSL-3, and 31.8 days in TfSL-4 (p value < 0.01).
Conclusions: Intensity of palliative care significantly differed between the TfSL groups. Neurological and gastrointestinal symptoms were most prominent across all TfSL groups. Symptom cluster analysis showed distinct clusters in TfSL-1 (cluster 1, fatigue/lack of appetite/nausea/somnolence; cluster 2, dyspnea/fear/myoclonus/seizures/spasticity) and TfSL-3/4 (cluster 1, spasticity; cluster 2, all other symptoms).
Background: People with advanced cancer experience multiple symptoms during their illness trajectory, which can fluctuate in intensity.
Aim: To describe the course of self-reported quality of life, emotional functioning, physical functioning and symptom intensity over time in cancer patients receiving palliative care.
Design: Longitudinal study with monthly assessments, using the EORTC QLQ-C15-PAL. Data were analysed (1) prospectively, from baseline to =8-month follow-up; and (2) retrospectively, by taking death as index date and comparing results from three cross-sectional subsamples at different stages of illness (time to death =6, 5–3 and 2–0 months). Linear mixed models were calculated.
Setting/participants: A total of 1739 patients (mean age 66, 50% male) from 30 palliative care centers in 12 countries were included.
Results: In prospective analyses, quality of life, functioning and symptoms–except nausea/vomiting–remained generally stable over time. In retrospective analyses, patients 2–0 months before death reported significantly lower quality of life and physical functioning scores than those 5–3 months before death, who in turn scored lower than those =6 months before death, suggesting progressive decline. Emotional functioning remained initially unchanged, but decreased in the last months. Pain, fatigue and appetite loss showed a stable increase in intensity towards death. Dyspnea, insomnia and constipation increased from 5–3 to 2–0 months before death. Nausea/vomiting only increased when comparing those =6 months before death with those 2–0 months before death.
Conclusion: While the prospective approach showed predominantly stable patterns for quality of life, functioning and symptom severity throughout study duration, retrospective analyses indicated that deterioration was already apparent before the terminal phase and accelerated close to death. Our findings support the importance of early symptom identification and treatment in this population, and highlight the need for further studies to explore what characterizes those with either lower or higher symptom burden at different time points towards death.
This study investigated the importance of religious and spiritual beliefs in daily life in explaining prolonged grief disorder (PGD) symptomatology. Participants were 588 bereaved adults who completed a questionnaire. The importance of spiritual beliefs in daily life explained a small to medium, significant 3% of variance in PGD symptoms, but religious beliefs in daily life did not. Individuals who placed moderate importance on spiritual beliefs in their daily life may experience more intense grief.
Despite research examining the role of metacognitive beliefs about coping processes in maintaining psychological disorders, to date, no studies have explored their role in the maintenance of prolonged grief. Twelve semistructured interviews were conducted with bereavement specialists and bereaved people with elevated grief to identify metacognitive beliefs about coping processes relevant to prolonged grief. Analysis revealed several metacognitive beliefs potentially driving maladaptive coping processes used by people with prolonged grief symptomatology. Findings may underpin the development of interventions that aim to modify unhelpful metacognitive beliefs that perpetuate maladaptive coping processes.
Purpose: Prior latent class analyses (LCA) have focused on people who were bereaved more than 6 months earlier. Research has yet to examine patterns and correlates of emotional responses in the first few months of bereavement. We examined whether subgroups could be identified among very recently (= 6 months) bereaved adults, based on their endorsement of symptoms of prolonged grief disorder (PGD), posttraumatic stress disorder (PTSD), and depression. Associations of class membership with overall disturbed grief, PTSD, and depression—assessed concurrently and at 6 months follow-up—were examined. Furthermore, we examined differences between classes regarding socio-demographics, loss-related, and cognitive behavioural variables.
Methods: PGD, PTSD, and depression self-report data from 322 Dutch individuals bereaved = 6 months earlier were subjected to LCA; N = 159 completed the follow-up assessment. Correlates of class membership were examined.
Results: Three classes were identified: a low symptom class (N = 114; 35.4%), a predominantly PGD class (N = 96; 29.8%), and a high symptom class (N = 112; 34.8%). PGD, PTSD, and depression scores (assessed concurrently and at 6 months follow-up) differed significantly between classes, such that low symptom class < predominantly PGD class < high symptom class. Being a woman, younger, more recently bereaved, experiencing deaths of a partner/child and unnatural losses, plus maladaptive cognitions and avoidance behaviours were associated with membership of the pervasive symptom classes.
Conclusion: In the first 6 months of bereavement, meaningful subgroups of bereaved people can be distinguished, which highlights the relevance of early detection of people with elevated bereavement-related distress and offering them preventive interventions that foster adaptation to loss.
CONTEXT: Patients with cancer experience many symptoms that disrupt quality of life, and symptom communication and management can be challenging. The Edmonton Symptom Assessment System (ESAS) was developed to standardize assessment and documentation of symptoms, yet research is needed to understand patients' and caregivers' experiences using the tool and its ability to impact patient-provider aligned care.
OBJECTIVES: To understand how the ESAS shapes communication between patients and providers by exploring patients' and caregivers' experiences using the ESAS and assessing the level of agreement in symptom assessment between patients and palliative care physicians.
METHODS: This study utilized a mixed-methods design. 31 semi-structured interviews were conducted and audio-recorded with patients (n = 18) and caregivers (n = 13). Data were analyzed following a social constructionist grounded theory approach. Patient and provider ESAS scores were obtained by medical chart review. Intraclass Correlation Coefficients (ICCs) were used to assess the level of agreement between patient-completed ESAS scores and provider-completed ESAS scores.
RESULTS: Participants reported that the ESAS was a beneficial tool in establishing priorities for symptom control and guiding the appointment with the palliative care physician, despite challenges in completing the ESAS. Filling out the ESAS can also help patients more clearly identify their priorities before meeting with their physician. There was a good to excellent level of agreement between patients and physicians in all symptoms analyzed.
CONCLUSION: The ESAS is beneficial in enhancing symptom communication when used as a guide to identify and understand patients' main concerns.
Introduction: Patients with end-stage liver disease (ESLD) suffer from myriad symptoms due to the systemic effects of the disease and unpredictable acute episodes, which contribute to progressive deterioration in quality of life (QOL). Despite clear evidence that palliative care (PC) improves QOL in other serious illnesses, PC is underutilized and delayed for ESLD patients. Through a comparative effectiveness trial of specialist led consultative PC (Model 1) versus trained hepatologist led PC (Model 2), we aim to build evidence on introducing PC into the routine outpatient care of ESLD patients.
Objective: We hypothesize that trained hepatologist led PC model will have a better improvement in QOL compared to consultative PC model.
Methods: This two-arm, multicenter cluster-randomized trial assesses the effectiveness of two PC models for patients with ESLD. Fourteen clinical centers will recruit 1260 patient-caregiver dyads. Each center is the unit of randomization. Hepatologists at sites randomized to the Model 2 have undergone web-based training in the principles of PC as pertained to ESLD. PC intervention is delivered over four visits (initial, one, two, and three months). Follow-up assessments occur at 6, 9, and 12 months. Eligible patients are those with new onset or ongoing complications of ESLD with a caregiver willing to participate.
Outcomes: The primary outcome is change in patients' QOL from baseline to three months. Secondary outcomes include symptom burden, depression, distress, satisfaction with care, caregiver burden and QOL, goal concordant care, and health care utilization.
Challenges and Contributions Engagement: research advisory board has been developed with representatives from the participating centers, who have provided active feedback on the protocol, outcomes, study methods, and training program.
Intervention Fidelity: Intervention fidelity will be maintained by adherence to a visit agenda and providers in both models completing a PC checklist after each study visit.
RATIONALE: Syncope caused by head and neck cancer (HNC) is rare. However, syncope caused by tongue cancer (TC) is even rarer. In TC, syncope is caused by tumor-mediated compression of the carotid sinus and stimulation of the glossopharyngeal nerve.
PATIENT CONCERNS: In this study, we report the case of a 48-year-old male patient who was diagnosed with advanced TC and bilateral cervical lymph node metastasis. On the third day of admission, the patient experienced recurrent syncope with hypotension and bradycardia.
DIAGNOSES: The patient was diagnosed with a well-differentiated squamous cell carcinoma of the tongue along with massive cervical lymph node metastasis and carotid sinus syndrome.
INTERVENTIONS: Initially, symptomatic treatment of syncope boosted the blood pressure and increased the heart rate. Thereafter, a temporary pacemaker was implanted. Finally, chemotherapy was used to control the tumor and relieve syncope.
OUTCOMES: After chemotherapy, the tongue ulcers and cervical lymph node reduced in size; syncope did not recur.
LESSONS: This case shows that chemotherapy may be a valid treatment option in patients with cancer-related syncope; however, the choice of chemotherapeutic drugs is critical. Intensive care provides life support to patients and creates opportunities for further treatment.
OBJECTIVES: At the end of life oral fluid intake is often reduced. Consensus about the most appropriate management for terminally ill patients with limited oral fluid intake is lacking. The objective of this study is to investigate to what extent the amount of fluid intake, preceding and during the dying phase, is related to the occurrence of death rattle and terminal restlessness.
METHODS: A multicentre prospective observational study was performed. Data on the occurrence of death rattle and terminal restlessness, fluid intake and opioid use of patients expected to die within a few days or hours were collected.
RESULTS: 371 patients were included. Death rattle was reported at least once in 40% (n=149) of patients during the dying phase. Death rattle occurrence was not associated with the amount of fluid intake during the days before dying. Terminal restlessness was reported in 26% of patients (n=96). Terminal restlessness was not associated with a lower amount of fluid intake during the days before dying. Terminal restlessness during the last 24 hours of life was associated with a higher amount of fluid (ie, >250 mL/day) during 48–25 hours before death.
CONCLUSIONS: Caution with fluid intake to prevent development of death rattle does not seem to be necessary. Our study suggests that a higher amount of fluid intake during 48–25 hours before death may be associated with the occurrence of terminal restlessness during the last 24 hours of life. These results suggest that actively providing dying patients with artificial fluid may not be beneficial.
BACKGROUND: Emergency departments (ED) serve as a contact point for critically ill patients. According to experience, a fraction of patients visiting ED present with palliative symptoms and require palliative care; however, the prevalence of these patients has not been determined in Austria so far.
METHODS: In the ED of a tertiary care medical centre in Carinthia all adult patients presenting between 8 January 2018 and 17 January 2018 were classified on arrival with the Manchester triage system (MTS) and were afterwards assessed with a validated 2-tier screening tool for palliative care. Patient records were screened in April 2018 to find out whether they received palliative care.
RESULTS: In total 1277 patients visited the ED during the investigation period. Of these patients 1096 were screened and 145 of these patients (13.2%) showed palliative symptoms and needed a goal-oriented therapy. Of these 145 patients 10.9% were assessed by MTS as emergency, 2.7% as very urgent, 34.7% as urgent, 51% as normal, and 0.7% as not urgent. Only 8 (5.5%) of the patients with palliative medical symptoms actually received palliative care consultation.
CONCLUSIONS: More than 1 in 10 patients attending an ED suffered from palliative symptoms. Hence it is to be expected that healthcare providers in an ED in Austria will frequently encounter patients with palliative symptoms in emergency admissions. Therefore, it is necessary to develop suitable structures to provide these patients with the best possible care.
Background: Diabetes is increasingly prevalent globally, including in palliative care. Guidelines vary as to the ideal glycemic goals for patients near the end of life. The relationship between hyperglycemia and attributable symptoms late in life remains ill defined.
Objective: To pilot the association between blood glucose level (BGL) and symptoms (nausea, fatigue, pain, and appetite) and mortality in palliative care patients with diabetes.
Design: This prospective observational consecutive cohort study consisted of 17 patients with diabetes admitted to an inpatient palliative care unit. Repeat measures of BGL and symptom distress scores using the patient-reported Symptom Assessment Scale (SAS) were recorded during a five-month period as was patient mortality. The association between BGL and SAS domains was assessed using negative binomial regression and the association between mortality and high versus low BGL was determined using log-rank statistics and Kaplan-Meier curves.
Results: All patients had malignancy: 15 had type 2 diabetes and 2 had steroid-induced diabetes. A total of 121 patient observation days were included in the analysis. BGL was inversely associated with patient-reported SAS for nausea (incidence rate ratio [IRR] = 0.83, 95% confidence interval [CI] = 0.70–0.99, p = 0.04), but not other symptoms. Insulin usage was also associated with decreased nausea (IRR = 0.24, 95% CI = 0.09–0.60, p = 0.002). Survival did not differ between low- and high-BGL groups.
Conclusion: These findings warrant a larger multisite consecutive cohort study and a re-exploration of current clinical practice. Ultimately, interventional trials comparing strict versus more liberal glycemic control on symptom management and survival are the ideal design to better understand differing levels of glycemic control at the end of life.
CONTEXT: Understanding the magnitude and risk-factors for symptom burden of cancer patients at the end-of-life is critical to guiding effective patient- and system-level interventions.
OBJECTIVES: We aimed to estimate the prevalence of severe patient-reported symptoms among cancer outpatients during the six months before death and to identify patient groups at a higher risk for reporting severe symptoms.
METHODS: This was a retrospective cohort study of cancer decedents at regional cancer centers from 2010-2016. Patient-reported Edmonton Symptom Assessment System (ESAS) scores from the last six months-of-life were linked to administrative databases. The proportion of patients reporting severe symptom scores (>7) for anxiety, depression, drowsiness, lack of appetite, nausea, pain, shortness of breath, tiredness, and overall wellbeing during the six months before death was described. Multivariable modified Poisson regression analyses were used to identify risk-factors for reporting severe symptom scores.
RESULTS: 22,650 of 39,084 cancer decedents had =1 symptom record in the last six months of life, resulting in 92,757 ESAS assessments. Severe scores were highest for tiredness (56%), lack of appetite (46%), and impaired wellbeing (45%). The proportion of patients reporting severe symptom scores was stable before progressively increasing at 3 months prior to death. Elderly, women, patients with high comorbidity, immigrants, living in urban areas or with high material deprivation were at increased risk of reporting severe scores.
CONCLUSIONS: Despite an integrated symptom screening program, rates of severe patient-reported symptom scores prior to death were high for cancer outpatients. Patient subgroups at increased risk of severe symptom burden may benefit from targeted interventions. Ongoing review of routinely collected symptom data may be used to assess the supportive care needs and guide targeted interventions at the health-system level.
Limited data exist describing the outcomes of patients receiving continuous lidocaine infusions. The objective of this study was to evaluate the effect of use of continuous lidocaine infusions for pain management at a community teaching hospital. A retrospective chart review was performed that included adult patients receiving continuous systemic lidocaine infusions for the treatment of pain. Twenty-one patients were included in the analysis. Dosing ranged from 0.25 to 2.8 mg/kg/h, with a median infusion time of 64 hours. Eight patients (38%) experienced a response (≥20% reduction in pain score during the infusion compared with prior to the infusion). Among responding patients, there was a decrease in pain scores at rest after starting lidocaine (compared with prior to lidocaine) (6.5 vs. 3.7, P = .001) that was maintained 24 hours after lidocaine discontinuation. There were no differences in pain scores before, during, or after lidocaine in the entire study sample. A difference in oral morphine equivalent intake was present comparing usage during the infusion vs. day +1 (P = .006) and day +2 (P < .001). Similarly, a difference was present comparing morphine equivalent usage on day −2 with day +2 (P = .008) and day −1 with day +1 (P = .006). Continuous infusions of systemic lidocaine appear to be beneficial in some patients experiencing uncontrolled pain and may improve pain scores while decreasing opioid requirements. Overall beneficial effects of systemic lidocaine may last longer than the infusion itself.
Cough is a common problem among cancer patients, especially lung cancer patients. Gabapentin has been shown to be effective in reducing cough number and severity in patients with idiopathic refractory cough. The authors report here the successful use of gabapentin at usual doses to treat cough in cancer patients, including two with lung cancer, with minimal side effects. Gabapentin may be a useful addition to the symptom management toolbox for palliation of cancer symptoms.
BACKGROUND: At the end of life, cancer survivors often experience exacerbations of complex comorbidities requiring acute hospital care. Few studies consider comorbidity patterns in cancer survivors receiving palliative care.
AIM: To identify patterns of comorbidities in cancer patients receiving palliative care and factors associated with in-hospital mortality risk.
DESIGN, SETTING/PARTICIPANTS: New South Wales Admitted Patient Data Collection data were used for this retrospective cohort study with 47,265 cancer patients receiving palliative care during the period financial year 2001-2013. A latent class analysis was used to identify complex comorbidity patterns. A regression mixture model was used to identify risk factors in relation to in-hospital mortality in different latent classes.
RESULTS: Five comorbidity patterns were identified: 'multiple comorbidities and symptoms' (comprising 9.1% of the study population), 'more symptoms' (27.1%), 'few comorbidities' (39.4%), 'genitourinary and infection' (8.7%), and 'circulatory and endocrine' (15.6%). In-hospital mortality was the highest for 'few comorbidities' group and the lowest for 'more symptoms' group. Severe comorbidities were associated with elevated mortality in patients from 'multiple comorbidities and symptoms', 'more symptoms', and 'genitourinary and infection' groups. Intensive care was associated with a 37% increased risk of in-hospital deaths in those presenting with more 'multiple comorbidities and symptoms', but with a 22% risk reduction in those presenting with 'more symptoms'.
CONCLUSION: Identification of comorbidity patterns and risk factors for in-hospital deaths in cancer patients provides an avenue to further develop appropriate palliative care strategies aimed at improving outcomes in cancer survivors.
BACKGROUND: The objective of this study was to determine whether severity and severity change of coexisting psychiatric symptoms might affect change of complicated grief (CG) regarding the Sewol ferry disaster.
METHODS: Data from a cross-sectional survey were obtained 18 months (Time 1) and 30 months (Time 2) after the disaster. We ascertained sociodemographic variables and variables obtained from self-reporting questionnaires (i.e., CG, depression, anxiety, post-traumatic stress disorder [PTSD], insomnia, embitterment, and suicidal risk) among 56 bereaved family members.
RESULTS: Severity of other psychiatric symptoms at Time 1 had no effect on change of CG at Time 2. However, changes in severity of PTSD over a year affected change of CG.
CONCLUSION: It is important to evaluate changes in severity of PTSD and its treatment during management of CG, especially when it involves bereaved families experiencing a traumatic accident.
Palliative care providers must seek to improve quality of life despite their patients' life-threating diseases, based on the concept of total pain, which includes physical, psychological and spiritual pain. Understanding the relationship between spiritual coping and psychological symptoms (especially depressive symptoms) could help healthcare teams better address patients' needs. Across-sectional survey with aconvenient sample of ambulatory palliative care patients investigated their psychological pain through the Hospital Anxiety and Depressive (HAD) scale and their use of spirituality using the Brief Religious/spiritual coping (BriefRCOPE) scale. Alinear regression model, using the HADS-depression as outcome variable and the BriefRCOPE as the independent variable, adjusting for confounding variables, investigated the possible association between these variables. Due to methodological limitations, just 40 out 130 potential participants were assessed, with 40percent showing depressive symptoms. In regression model, depressive and anxiety symptoms were significantly associated with each other (p = 0.037 and 0.015, respectively) and negative religious/spiritual coping was associated with depressive symptoms (p = 0.033). This study found asignificant relationship between psychological pain and negative spiritual coping mechanisms. Palliative care professionals should be trained to address patients' total pain and spiritual needs, supporting their ability to cope with their suffering.
Background: Cancer-related physical symptoms can decrease patients' overall quality of life and are often underdiagnosed. The Edmonton Symptom Assessment Scale (ESAS) is widely used in palliative care for cancer patients to easily assess cancer patients' symptoms. It has been often modified, adding symptoms and explanations, and translated into many languages. The European Association of Palliative Care research team developed a database, which included the modified 12-item ESAS-r as the symptom assessment tool.
Objectives: The purpose of this study was to achieve the translation and cross-cultural validation in French of the 12-item ESAS-r, the ESAS12-F.
Design: A French version of the ESAS-r was developed using a standardized forward and backward translation method. Patients completed the ESAS12-F and provided feedback on the translation.
Setting/Subjects: Forty-five patients with advanced cancer, followed by the palliative care team from the Lyon Sud University Hospital in France, were recruited.
Results: Eighty-nine percent of patients considered the ESAS easy to understand. They highlighted some concerns more about the tool itself than the translation: the time line "now," the difficulty to quantify a symptom in a numerical evaluation. Some items (sleep and appetite) needed to be reread and for some others (digestive and psychological symptoms, and well-being) to be reordered in the questionnaire.
Conclusion: The ESAS12-F is well accepted and easy to use for the cancer patients. The next step is to carry out a psychometric validation of the definitive version of the ESAS12-F.