BACKGROUND: Accessible indicators of aggressiveness of care at the end-of-life are useful to monitor implementation of early integrated palliative care practice. To determine the intensity of end-of-life care from exhaustive data combining administrative databases and hospital clinical records, to evaluate its variability across hospital facilities and associations with timely introduction of palliative care (PC).
METHODS: For this study designed as a decedent series nested in multicentre cohort of advanced cancer patients, we selected 997 decedents from a cohort of patients hospitalised in 2009-2010, with a diagnosis of metastatic cancer in 3 academic medical centres and 2 comprehensive cancer centres in the Paris area. Hospital data was combined with nationwide mortality databases. Complete data were collected and checked from clinical records, including first referral to PC, chemotherapy within 14 days of death, >=1 intensive care unit (ICU) admission, >=2 emergency department visits (ED), and >= 2 hospitalizations, all within 30 days of death.
RESULTS: Overall (min-max) indicator values as reported by facility providing care rather than the place of death, were: 16% (8-25%) patients received chemotherapy within 14 days of death, 16% (6-32%) had >=2 admissions to acute care, 6% (0-15%) had >=2 emergency visits and 18% (4-35%) had >=1 intensive care unit admission(s). Only 53% of these patients met the PC team, and the median (min-max) time between the first intervention of the PC team and death was 41 (17-112) days. The introduction of PC > 30 days before death was independently associated with lower intensity of care.
CONCLUSIONS: Aggressiveness of end-of-life cancer care is highly variable across centres. This validates the use of indicators to monitor integrated PC in oncology. Disseminating a quality audit-feedback cycle should contribute to a shared view of appropriate end-of-life care objectives, and foster action for improvement among care providers.
PURPOSE: To conduct a systematic review and meta-analysis examining the association of the prevalence of depression and time since spousal loss in widowed people.
METHODS: The databases MEDLINE, Embase and PsycInfo were searched (May 2017) for papers reporting on time since spousal loss in widowed people and the prevalence of common mental disorders. A systematic review was conducted according to MOOSE guidelines. Random effects meta-analyses of the prevalence of depression were conducted by intervals of time since spousal loss.
RESULTS: The literature search identified 12,982 studies of which 22 were eligible for inclusion in the systematic review. Of these, 14 were furthermore eligible for inclusion in the meta-analysis. The summary estimates found in the meta-analysis for the prevalence of depression in the intervals of time since spousal loss were: = 1 month: 38.2% (21.9–55.8%); > 1 month to 3 months: 25.0% (17.3–33.5%); > 3 months to 6 months: 23.1% (18.0–28.7%); > 6 months to 12 months: 19.4% (15.2–24.0%); > 12 months to 18 months: 11.1% (5.3–18.7%); > 18 months to 24 months: 15.2% (12.3–18.2%); > 24 months to 60 months: 10.5% (4.3–18.5%).
CONCLUSION: Widowhood is associated with a high prevalence of depression and the study identifies a population group needing special attention in daily clinical practice. The prevalence is highest in the first month of widowhood, however, continues to be high at least 5 years into widowhood.
Opiophobia is one of the principal causes of opioids' under-prescription in palliative care. From periods of abuse to times where their use was banned - which is still the case in some countries - the history of opioids is complex and it partially explains opiophobia. One of the main concern about the use of opioids is the risk of -dependence. Furthermore, scientific literature is not clear on this subject, in particular due to the fact that the scientific community has not yet come to an agreement on the terminology. This article shows, on the basis of specific studies, the predominance of opiophobia among the population and it outlines an historic overview of the use of opioids. In the last section, it focuses on the concept of dependence and the difficulty of measuring it in chronic opioid therapies.
AIM: In this study our aim was to evaluate the nosocomial infections and to understand factors affecting the cost of used antibiotics in palliative care unit.
MATERIALS AND METHODS: Between 2016 and 2017, 113 patients were included in the study in palliative care unit of University of Health Sciences Bursa Yuksek Ihtisas Research and Training Hospital. Patients medical records were analyzed retrospectively for nosocomial infections, chronic diseases, presence of decubitis ulcers, opioid use, enteral, parenteral feedings, mortality and antibiotic cost.
RESULTS: Nosocomial infections were observed in 74.3% of the cases and 92.0% of patients used antibiotics. The mean duration of antibiotic use was 23.13 ± 18.06 days; and the average antibiotic cost was 2009.72 ± 2153.37 TL. Length of stay, male sex, presence of decubitus ulcers, tracheostomy, enteral and parenteral nutrition significantly increased antibiotic cost. Antibiotic cost and mortality were not related statistically.
CONCLUSIONS: A vicious circle in palliative care involves the following order: length of stay, increased rate of infection, use of antibiotics, infection with resistant microorganisms, use of broad spectrum antibiotics, increased length of stay; all affecting each other. Therefore, using antibiotics for aggressive treatment of infections in palliative care is contraindicated as it opposes to real philosophy of palliative care.
The recent controversy around the hospital end of life care has highlighted the vulnerability of dying patients and their families. However, little is known about how social workers provide support and intervention around the end of life in the hospital. Eight hospital social workers provided qualitative descriptions of their clinical practice for adult patients and their families. Highlighting a theoretical orientation towards a person-in-environment approach, social workers develop unique interventions to contribute to multidisciplinary care. Findings emphasize the need to prepare social work students and clinicians for the reality of working with end of life issues.
PURPOSE: The diagnosis of a terminal disease bears existential challenges, which activate the attachment system. Attachment insecurity, as well as existential resources, such as spiritual well-being, influences patients' extent of psychological distress. Knowledge about the interrelation of these constructs is limited. Based on current research, we assume spiritual well-being to mediate the association of attachment insecurity and psychological distress.
METHODS: We obtained data from the baseline measurement of a randomized controlled trial in advanced cancer patients. Patients were sampled from the University Medical Centers of Hamburg and Leipzig, Germany. Main outcome measures included the Patient Health Questionnaire (PHQ-9), the Death and Dying Distress Scale (DADDS), the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp), and the Experience in Close Relationships Scale (ECR-M16) for assessing attachment insecurity. We tested the mediation hypothesis with two regression analyses using bootstrapping procedure.
RESULTS: A total of 190 patients were included. Spiritual well-being mediated the association of attachment insecurity and depression (R2 = 11%), as well as death anxiety (R2 = 15%), in fearful-avoidant attached patients. Neither dismissingly nor preoccupied attached patients differ in terms of spiritual well-being and psychological distress in comparison with secure attached patients.
CONCLUSION: Spiritual well-being plays a relevant role in advanced cancer patient's mental health through mediating the association of attachment and psychological distress. Developing a better understanding of the interdependency of the constructs of spiritual well-being and attachment can help to develop individually tailored advanced cancer care programs and psychotherapeutic interventions.
PURPOSE: Although it is accepted that in general spousal caregivers of patients with cancer are under high emotional and physical strain, little is known about the quality of life specifically among spousal caregivers of older cancer patients. The aim of the current study is to explore the emotional toll of spousal caregivers of cancer patients aged 65-85 years.
METHODS: This study surveyed 242 spousal caregivers of patients = 65 years old, diagnosed with cancer, treated with curative or palliative intent, and within 6 months of treatment at enrollment. Standardized measures completed by the caregivers included depression measure (Geriatric Depression Scale); distress (Distress Thermometer); and social support (the Cancer Perceived Agents of Social Support). Logistic regression analyses were used in order to identify the predictor of clinical depression and distress. The analyses were adjusted for patient (sociodemographic, functional performance, and medical status) and caregiver (sociodemographic and social support) factors.
RESULTS: Among the caregivers, the frequencies of clinical depression and distress were 16.5% and 28% respectively. Increasing patient age and time from diagnosis were associated with reduced levels of caregiver depression. Higher levels of friends and spousal support (support from the patients) were associated with non-clinical levels of depression and distress.
CONCLUSION: Increasing patient age and caregiver's perceived spousal support may both have a positive effect on caregivers' levels of depression. This can be utilized by clinicians in the process of empowering older patients and their spousal caregivers to confront the challenges of cancer treatment into advanced old age.
Long-term neurological conditions (LTNCs) often cause debilitating symptoms. Better understanding of symptom dimensions in LTNCs is needed to support health professionals and improve care. This can be achieved by exploring the factor structure of a standardised measure of symptoms in LTNC patients. The symptom subscale of the Integrated Palliative Outcome Scale for LTNCs (IPOS Neuro-S24) comprises 24 items measuring symptom severity. Descriptive statistics and psychometric properties of the scale were assessed, followed by differential item functioning (DIF), exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). Data from N = 238 patients were analysed. The mean IPOS Neuro S-24 score was 27.0 (possible range 0–96) and floor effects were found for 21 items. The scale had good internal consistency (Cronbach’s alpha = 0.77). Weak evidence of DIF was found for nine items. All but one item (falls) loaded onto four factors with loadings > 0.3. The factors represented four clinically meaningful symptom dimensions: fatigue, motor symptoms, oral problems and non-motor symptoms. We identified a reliable four-factor structure of symptom experience in LTNC patients. The results suggest that symptom dimensions are common across LTNCs. The IPOS Neuro S-24 is an appropriate tool to measure symptoms in LTNC patients, which may improve care.
Few data are available regarding treatment outcomes in lung cancer patients with metastasis who initiated mechanical ventilation in the emergency department (ED). We aimed to evaluate 28-day mortality in lung cancer patients with metastasis who initiated mechanical ventilation in the ED. Patients with solid malignancy who initiated mechanical ventilation in the ED of a tertiary hospital were retrospectively identified and stratified into four groups according to the presence of lung cancer and metastasis. Among 212 included patients, the mortality rates by the 28th hospital day were as follows: 44.2% (19/43) in non-lung cancer patients without metastasis, 63.2% (43/68) in non-lung cancer patients with metastasis, 52.4% (11/21) in lung cancer patients without metastasis, and 66.2% (53/80) in lung cancer patients with metastasis. In multivariable analysis, lung cancer patients with metastasis had significantly higher odds ratio for 28-day mortality than non-lung cancer patients without metastasis (adjusted odds ratio [OR] = 7.17, 95% confidence interval [CI] = 2.14–24.01). Sepsis-related respiratory failure (adjusted OR = 2.60, 95% CI = 1.16–5.84) and cardiopulmonary resuscitation (adjusted OR = 13.34, 95% CI = 4.45–39.95) over respiratory failure without sepsis and acute organ dysfunction process measured by sequential organ failure assessment (SOFA) score (adjusted OR = 1.15, 95% CI = 1.05–12.6) were independently associated with an increase in mortality rate. In conclusion, the treatment outcomes in lung cancer patients with metastasis who initiated mechanical ventilation in the ED were poor. Aggressive resuscitation versus end-of-life care in advance of an unexpected medical crisis should be considered in lung cancer patients with metastasis via a multidisciplinary approach with a consideration of underlying comorbid illnesses in the acute organ dysfunction processes.
BACKGROUND AND OBJECTIVES: Clinical management for terminal patients should consider various aspects, particularly the patient's functional assessment, which correlates well with the short-term prognosis. The prognosis could improve if the presence of symptoms strongly associated with a poorer progression were included. The study's main objective was to assess whether the prognosis according to the Palliative Performance Scale (PPS) improved with the presence/absence of pain-dyspnoea-delirium symptoms. The secondary objective was to determine caregiver satisfaction with the transfer to medium-stay palliative care units (MSPCUs), which are prepared for medium stays of approximately one month.
PATIENTS AND METHOD: We conducted a prospective, observational, multicentre (regional) study that analysed survival in MSPCUs according to the PPS dichotomized to > 20% and = 20%. We estimated the mean survival functions using the Kaplan-Meier method and compared them according to the Cox proportional hazards ratios (HR). Caregiver satisfaction was studied using an anonymous self-administered Likert questionnaire.
RESULTS: The study included 130 patients. The PPS = 20% and PPS > 20% subgroups had a median survival of 6 (3-13) days and 21 (11-42) days, respectively, with an unadjusted mortality HR 3.1-fold greater in the PPS = 20% subgroup. The HR did not change when adjusted for the symptoms. Eighty-three percent of the caregivers found the transfer beneficial, and 40% observed better patient care.
CONCLUSIONS: For patients transferred from general hospitals to MSPCUs, PPS scores = 20% were associated with survival shorter than one week, with a 3-fold higher mortality HR than patients with PPS scores > 20%, without the analysis adjusted for the presence of pain-dyspnoea-delirium providing greater prognostic accuracy. The caregivers found benefits mainly in the convenience of the facilities and distance.
The patient who enters at the intensive care unit (ICU) usually does because of health conditions that are sometimes irreversible and lead to death, and the care at the end of life becomes the main factor of this situation; therefore, the aim of this article was to understand the meaning of the experience of giving care to families at the end of life in an ICU. For this reason, a qualitative, hermeneutic phenomenological research was carried out. For the data collection, a semi-structured interview was conducted to 18 participants, and the results were returned to each of the participants in order to validate each of the categories and interpretations. Among these results, two main categories were identified: emotional response of the nurse to the family and nursing care to the family of patients at the end of life. It was concluded that the nurses working at the ICU are facing aspects related to the end of life that generates emotional and psychological burden; additionally, they do not have specific training in this subject, especially in relation to the care of the families in this situation, for which they provide this care based on empiricism.
BACKGROUND: The use of noninvasive ventilation (NIV) in the emergency setting to reverse hypercapnic coma in frail patients with end-stage chronic respiratory failure and do-not-intubate orders remains a questionable issue given the poor outcome of this vulnerable population. We aimed to answer this issue by assessing not only subjects' outcome with NIV but also subjects' point of view regarding NIV for this indication.
METHODS: A prospective observational case-control study was conducted in 3 French tertiary care hospitals during a 2-y period. Forty-three individuals who were comatose (with pH < 7.25 and PaCO2 > 100 mm Hg at admission) were compared with 43 subjects who were not comatose and who were treated with NIV for acute hypercapnic respiratory failure. NIV was applied by using the same protocol in both groups. They all had a do-not-intubate order and were considered vulnerable individuals with end-stage chronic respiratory failure according to well-validated scores.
RESULTS: NIV yielded similar outcomes in the 2 groups regarding in-hospital mortality (n = 12 [28%] vs n = 12 [28%] in the noncomatose controls, P > .99) and 6-month survival (n = 28 [65%] vs n = 22 [51%] in the noncomatose controls, P = .31). Despite poor quality of life scores (21.5 ± 10 vs 31 ± 6 in the awakened controls, P = .056) as assessed by using the VQ11 questionnaire 6 months to 1 y after hospital discharge, a large majority of the survivors (n = 23 [85%]) would be willing to receive NIV again if a new episode of acute hypercapnic respiratory failure occurs.
CONCLUSION: In the frailest subjects with supposed end-stage chronic respiratory failure that justifies treatment limitation decisions, it is worth trying NIV when acute hypercapnic respiratory failure occurs, even in the case of extreme respiratory acidosis with hypercapnic coma at admission.
INTRODUCTION: Myocardial infarction (MI) remains a leading cause of mortality. Palliative care (PC) has recently expanded in scope to include noncancer-related conditions. There is little data available regarding the use of PC in critical MI patients.
METHODS: We used discharge data from the National Inpatient Sample for the years 2012 to 2014. We examined discharges with a primary diagnosis of MI. We measured the rate of PC referral, trend in utilization during the study period and possible predictors of PC utilization.
RESULTS: Among 1 667 520 discharges of those patients =18 years of age and with a primary diagnosis of MI, use of PC was seen in 2.5% of all patients and in 24% of patients who died. In a multivariable logistic regression, we found the presence of cancer, cardiogenic shock, dementia, stroke, hemiplegia, the use of circulatory support, and mechanical ventilation were associated with higher likelihood of PC referral. Palliative care referral increased during the study period, odds ratio of 1.18 per year (95% confidence interval: 1.14-1.21; P value <.001). Palliative care was not associated with prolonged length of stay.
CONCLUSION: Several comorbidities were associated with the use of PC, most notably the use of mechanical ventilation and the presence of metastatic cancer. There was a trend of increasing use of PC during the study period.
Questions related to end-of-life decision making are common in clinical ethics and may be exceedingly difficult. Chief among these are the provision of cardiopulmonary resuscitation (CPR) and do-not-resuscitate orders (DNRs). To better address such questions, clarity is needed on the values of medical ethics that underlie CPR and the relevant moral framework for making treatment decisions. An informed consent model is insufficient to provide justification for CPR. Instead, ethical justification for CPR rests on the rule of rescue and on substituted interest judgments. Patients' known wishes and values are relevant, particularly in protecting them from unwanted CPR. Clinicians should rescue patients with the means at their disposal, as a prima facie moral imperative, unless there are compelling reasons to refrain. We present a moral framework for making decisions regarding CPR and DNR.
Delivering comprehensive end-of-life care to dying patients must involve addressing physical symptoms and psychosocial concerns. Care pathways have been introduced to support health care teams in delivering this care. This retrospective chart review explores the contributions of the Spiritual Care Team in the care of dying patients. They offer a range of interventions which include supportive care, religious and spiritual support. This study was one step towards appreciating the contributions of the Spiritual Care Team.
CONTEXT: Amyotrophic lateral sclerosis (ALS) is an all-encompassing, life-limiting disease, resulting in the eventual paralysis of all voluntary muscles and concurrent loss of independence. As the disease advances, both patients and their family caregivers develop complex biological, psychological, and social needs, leading to increasing calls for the involvement of palliative care teams in the management of ALS.
OBJECTIVE: The purpose of this study was to generate a rich description of the realities of living with ALS, equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers.
METHODS: This study employed a mixed-methods design, with quantitative data supplementing a larger body of qualitative data. Semi-structured interviews with 42 key stakeholders, including patients, family caregivers, and health-care providers, were analyzed for themes essential for effective understanding of ALS.
RESULTS: Identified themes were organized into 2 broad categories: (1) biopsychosocial needs of patients with ALS and family caregivers and (2) the impact of ALS on spiritual and emotional well-being. Quantitative data supported the recognized themes, particularly with regard to challenges associated with preserving independence, securing sufficient social support, and managing the emotional complexities of the disease.
CONCLUSION: Study findings illustrate the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The complex biopsychosocial needs experienced by patients and family caregivers suggest numerous opportunities for meaningful palliative care involvement.
CONTEXT: Taste and smell abnormalities (TSA) occur throughout the cancer trajectory regardless of cancer primary site and contribute to cancer-associated malnutrition. TSA etiology is poorly understood. Tumor-related inflammation is a possible cause.
OBJECTIVE: This study examined the prevalence, characteristics, and severity of TSA in advanced cancer and explored the relationship between TSA and nutritional status. No previous study combined subjective and objective measures for both taste and smell assessment in this population.
METHOD: Consecutive advanced cancer hospice patients were recruited. A modified version of the "Taste and Smell Survey" assessed subjective TSA. Validated taste strips and "Sniffin' Sticks" were the objective measures. The abridged patient-generated subjective global assessment evaluated nutritional status.
RESULTS: A 93% prevalence of TSA in 30 patients with advanced cancer was identified. When subjective and objective evaluations were combined, 28 had taste abnormalities, 24 smell abnormalities, and 24 both. Taste changes included "persistent bad taste" (n = 18) and changes in how basic tastes were perceived. Half reported smell was not "as strong" as prediagnosis, while more than half (n = 16) had an objective smell abnormality. Most (97%) were at risk of malnutrition. Fatigue, dry mouth, early satiety, and anorexia were common nutrition-impact symptoms. No statistically significant relationship was found between TSA and malnutrition scores.
CONCLUSIONS: TSA were highly prevalent. Subjective taste and smell changes did not always accord with objective TSA, suggesting both assessments are valuable. TSA characteristics varied, and particular foods tasted and smelled different and were not enjoyed as before. TSA are common, high-impact problems in advanced cancer.
BACKGROUND: In rural communities, providing hospice care can be a challenge. Hospice personnel sometimes travel great distances to reach patients, resulting in difficulty maintaining access, quality, cost-effectiveness, and safety. In 1998, the University of Kansas Medical Center piloted the country's first TeleHospice (TH) service. At that time, challenges with broad adoption due to cost and attitudes regarding technology were noted. A second TH project was launched in early 2017 using newer technology; this article updates that ongoing implementation.
METHODS: The Organizational Change Manager was followed for the guided selection of the hospice partner. The University of Kansas Medical Center partnered with Hospice Services, Inc. (HSI), a leader in rural hospice care, providing services to 16 Kansas counties. Along with mobile tablets, a secure cloud-based videoconferencing solution was chosen for ease of use.
RESULTS: From August 2017 through January 2018, 218 TH videoconferencing encounters including 917 attendees occurred. Calls were made for direct patient care, family support, and administrative purposes. These TH calls have been shown to save HSI money, and initial reports suggest they may strengthen the communication and relationships between staff, patients, and the patient's family.
CONCLUSION: Finding innovative, cost-effective, and community-driven approaches such as TH are needed to continually advance hospice care. TeleHospice's potential to supplement and improve hospice services while reducing costs is significant, but continued research is needed to understand best fit within frontier hospices, to inform future urban applications, and to address reimbursement.
Experts estimate that over 25 million Americans are in recovery from addiction to alcohol and other drugs. Many will be confronted with a serious progressive illness necessitating palliative care or hospice services. In current literature, substance use disorder has mostly been examined in relation to appropriate symptom assessment and management, opioid risk screening, and controlled substance prescribing practices. However, as hospice and palliative care (HPC) clinicians strive to provide whole person care for the seriously ill, awareness and facilitation of healthy psychosocial-spiritual coping strategies for recovering addicts should enhance such care. One of the more common support mechanisms to support recovery is the 12-step program, based on Alcoholics Anonymous. Twelve-step programs have been shown to provide effective coping strategies, not only to help facilitate ongoing abstinence but also to support other psychosocial-spiritual crises. The HPC providers may help to serve those living with addiction disorders better by assessing not only patient histories of substance use/abuse and other addictive behaviors but by facilitating their ongoing support recovery efforts. Here, we use 2 HPC cases to illustrate the value of 12-step recovery programs in patient support and provide recommendations for enhancing such healthy coping in HPC clinical settings.
OBJECTIVES: Recent evidence suggests that music therapy, a holistic method of care, potentially is beneficial for symptom management. This quality improvement project aimed to evaluate the effect of music therapy on symptom management and coping skills of patients receiving palliative care and to measure patient satisfaction with the therapy. A secondary aim was to evaluate staff perception of patient outcomes of music therapy services.
METHODS: Palliative care clinicians attended a 30-minute education session on music therapy before the project was initiated. Study participants were patients and their families who were cared for by the inpatient palliative care consulting service at Mayo Clinic (Rochester, Minnesota) from June 1 through December 31, 2016. Patients were eligible if they required ongoing management of pain and anxiety or needed adaptive coping strategies. Patients and families were asked to complete a survey after each music therapy session. Staff were asked to complete a survey after completion of the project.
RESULTS:: Music therapy was provided to 57 patients and 53 family members. Patient surveys indicated a decrease in anxiety and pain. All patients reported that music therapy facilitated stress relief, relaxation, pain relief, spiritual support, emotional support, and a general feeling of wellness. All participants recommended music therapy services for others. Palliative care clinicians reported that music therapy added value as a holistic service.
CONCLUSIONS:: In this quality improvement project, music therapy positively affected multiple domains of well-being for patients receiving palliative care.