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.
On March 28, 2020, the Office of Civil Rights at the Department of Health and Human Services (HHS) opened investigations into recently released critical care crisis triage protocols. Disability rights advocates are urging Congress to prohibit crisis triage based on “anticipated or demonstrated resource-intensity needs, the relative survival probabilities of patients deemed likely to benefit from medical treatment, and assessments of pre- or post-treatment quality of life.”
Background: Malnutrition worsens health-related quality of life (HRQoL) and the prognosis of patients with advanced cancer. This study aimed to assess the clinical benefits of parenteral nutrition (PN) over oral feeding (OF) for patients with advanced cancer cachexia and without intestinal impairment.
Material and Methods: In this prospective multicentric randomized controlled study, patients with advanced cancer and malnutrition were randomly assigned to optimized nutritional care with or without supplemental PN. Zelen's method was used for randomization to facilitate inclusions. Nutritional and performance status and HRQoL using the European Organization for Research and Treatment of Cancer QLQ-C15-PAL questionnaire were evaluated at baseline and monthly until death. Primary endpoint was HRQoL deterioration-free survival (DFS) defined as a definitive deterioration of =10 points compared with baseline, or death.
Results: Among the 148 randomized patients, 48 patients were in the experimental arm with PN, 63 patients were in the control arm with OF only, and 37 patients were not included because of early withdrawal or refused consent. In an intent to treat analysis, there was no difference in HRQoL DFS between the PN arm or OF arm for the three targeted dimensions: global health (hazard ratio [HR], 1.31; 95% confidence interval [CI], 0.88–1.94; p = .18), physical functioning (HR, 1.58; 95% CI, 1.06–2.35; p = .024), and fatigue (HR, 1.19; 95% CI, 0.80–1.77; p = .40); there was a negative trend for overall survival among patients in the PN arm. In as treated analysis, serious adverse events (mainly infectious) were more frequent in the PN arm than in the OF arm (p = .01).
Conclusion: PN improved neither HRQoL nor survival and induced more serious adverse events than OF among patients with advanced cancer and malnutrition.
Clinical trial identification number. NCT02151214
Implications for Practice: This clinical trial showed that parenteral nutrition improved neither quality of life nor survival and generated more serious adverse events than oral feeding only among patients with advanced cancer cachexia and no intestinal impairment. Parenteral nutrition should not be prescribed for patients with advanced cancer, cachexia, and no intestinal failure when life expectancy is shorter than 3 months. Further studies are needed to assess the useful period with a potential benefit of artificial nutrition for patients with advanced cancer.
Background: The McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items. Response processes may be affected when measurement instruments are translated and adapted for use in different cultures. The aim of this study was to translate and examine content validity and response processes during completion of MQOL-E and QOLLTI-F version 2 (v2) among Swedish patients with life-threatening illness and their family carers.
Methods: The study was conducted in two stages (I) translation and adaptation (II) examination of content validity and response processes using cognitive interviews with 15 patients and 9 family carers. Participants were recruited from the hemodialysis unit, heart clinic, lung clinic and specialized palliative care of a Swedish county hospital. Patients had life-threatening illness such as advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage kidney disease or advanced cancer. Patients were outpatients, inpatients or receiving home care.
Results: Patients and family carers respectively believed that the items of the MQOL-E and QOLLTI-F v2 reflect relevant and important areas of their quality of life. Although some items needed more time for reflection, both instruments were considered easy to understand. Some changes were made to resolve issues of translation. Participants expressed that reflecting on their situation while answering questions was valuable and meaningful to them, and that responding was an opportunity to express feelings.
Conclusions: The results of response processes pertaining to the Swedish translations of both MQOL-E and QOLLTI-F v2 contribute evidence regarding content validity, linguistic equivalence and cultural appropriateness of the translated instruments. In addition, results show that the instruments may support conversations on matters of importance for quality of life between patients and/or family carers and health care professionals. Further research is needed to study the psychometric properties of Swedish translations.
Importance: Family caregivers of persons with advanced heart failure perform numerous daily tasks to assist their relatives and are at high risk for distress and poor quality of life.
Objective: To determine the effect of a nurse-led palliative care telehealth intervention (Educate, Nurture, Advise, Before Life Ends Comprehensive Heart Failure for Patients and Caregivers [ENABLE CHF-PC]) on quality of life and mood of family caregivers of persons with New York Heart Association Class III/IV heart failure over 16 weeks.
Design, Setting, and Participants: This single-blind randomized clinical trial enrolled caregivers aged 18 years and older who self-identified as an unpaid close friend or family member who knew the patient well and who was involved with their day-to-day medical care. Participants were recruited from outpatient heart failure clinics at a large academic tertiary care medical center and a Veterans Affairs medical center from August 2016 to October 2018.
Intervention: Four weekly psychosocial and problem-solving support telephonic sessions lasting between 20 and 60 minutes facilitated by a trained nurse coach plus monthly follow-up for 48 weeks. The usual care group received no additional intervention.
Main Outcomes and Measures: The primary outcomes were quality of life (measured using the Bakas Caregiver Outcomes Scale), mood (anxiety and/or depressive symptoms measured using the Hospital Anxiety and Depression Scale), and burden (measured using the Montgomery-Borgatta Caregiver Burden scales) over 16 weeks. Secondary outcomes were global health (measured using the PROMIS Global Health instrument) and positive aspects of caregiving.
Results: A total of 158 family caregivers were randomized, 82 to the intervention and 76 to usual care. The mean (SD) age was 57.9 (11.6) years, 135 (85.4%) were female, 82 (51.9%) were African American, and 103 (65.2%) were the patient’s spouse or partner. At week 16, the mean (SE) Bakas Caregiver Outcomes Scale score was 66.9 (2.1) in the intervention group and 63.9 (1.7) in the usual care group; over 16 weeks, the mean (SE) Bakas Caregiver Outcomes Scale score improved 0.7 (1.7) points in the intervention group and 1.1 (1.6) points in the usual care group (difference, -0.4; 95% CI, -5.1 to 4.3; Cohen d = -0.03). At week 16, no relevant between-group differences were observed between the intervention and usual care groups for the Hospital Anxiety and Depression Scale anxiety measure (mean [SE] improvement from baseline, 0.3 [0.3] vs 0.4 [0.3]; difference, -0.1 [0.5]; d = -0.02) or depression measure (mean [SE] improvement from baseline, -0.2 [0.4] vs -0.3 [0.3]; difference, 0.1 [0.5]; d = 0.03). No between-group differences were observed in the Montgomery-Borgatta Caregiver Burden scales (d range, -0.18 to 0.0). Differences in secondary outcomes were also not significant (d range, -0.22 to 0.0).
Conclusions and Relevance: This 2-site randomized clinical trial of a telehealth intervention for family caregivers of patients with advanced heart failure, more than half of whom were African American and most of whom were not distressed at baseline, did not demonstrate clinically better quality of life, mood, or burden compared with usual care over 16 weeks. Future interventions should target distressed caregivers and assess caregiver effects on patient outcomes.
Patients with serious illnesses are often asked whether they would prioritize relief of pain and suffering or longevity if these 2 goals were to come into conflict. A significant majority state that they would prioritize relief of pain and suffering. However, it is difficult for clinicians and family caregivers to operationalize such preferences without knowing the limits of these preferences or how much time alive patients would be willing to sacrifice in the service of their palliative goals. We sought to quantify trade-offs between survival time and avoidance of intensive care near the end of life among seriously ill hospitalized patients.
Background: Optimizing quality of life (QoL) remains the central tenet of care in patients with incurable cancer; however, determinants of QoL are not clear. The objective of the current study was to examine which factors influence QoL in patients with incurable cancer.
Methods: A multicenter study of adult patients with advanced cancer was conducted in Ireland and the United Kingdom between 2011 and 2016. Data were collected from patients at study entry and included patient demographics, Eastern Cooperative Oncology Group performance status (ECOG-PS), nutritional parameters (the percentage weight loss [%WL]), muscle parameters assessed using computed tomography images (skeletal muscle index and skeletal muscle attenuation), inflammatory markers (modified Glasgow Prognostic score [mGPS]), and QoL data (the European Organization for Research and Treatment Quality-of-Life Questionnaire C-30). The relation between clinical, nutritional, and inflammatory parameters with QoL was assessed using the Spearman rank correlation coefficient and multivariate binary logistic regression. Components of the European Organization for Research and Treatment Quality-of-Life Questionnaire C-30 (physical function, fatigue, and appetite loss) and summary QoL scores were mean-dichotomized for the logistic regression analyses.
Results: Data were available for 1027 patients (51% men; median age, 66 years). Gastrointestinal cancer was most prevalent (40%), followed by lung cancer (26%) and breast cancer (9%). Distant metastatic disease was present in 87% of patients. The %WL, ECOG-PS, and mGPS were significantly correlated with deteriorating QoL functional and symptom scales (all P < .001). On multivariate regression analysis, >10% WL (odds ratio [OR], 2.69; 95% CI, 1.63-4.42), an ECOG-PS of 3 or 4 (OR, 14.33; 95% CI, 6.76-30.37), and an mGPS of 2 (OR, 1.58; 95% CI, 1.09-2.29) were independently associated with poorer summary QoL scores. These parameters were also independently associated with poorer physical function, fatigue, and appetite loss (all P < .05). Low skeletal muscle attenuation was independently associated with poorer physical functioning (OR, 1.67; 95% CI, 1.09-2.56), but muscle parameters were not independently associated with fatigue, appetite loss, or QoL summary scores.
Conclusions: The current findings indicate that QoL is determined (at least in part) by WL, ECOG-PS, and the systemic inflammatory response in patients with advanced cancer. Identifying early predictors of poor QoL may allow the identification of patients who may benefit from early referral to palliative and supportive care, which has been shown to improve QoL.
Background: Palliative care improves quality of life in patients with heart failure. Whether men and women with heart failure derive similar benefit from palliative care interventions remains unknown.
Methods: In a secondary analysis of the PAL-HF trial (Palliative Care in Heart Failure), we analyzed differences in quality of life among men and women with heart failure and assessed for differential effects of the palliative care intervention by sex. Differences in clinical characteristics and quality-of-life metrics were compared between men and women at serial time points. The primary outcome was change in Kansas City Cardiomyopathy Questionnaire score between baseline and 24 weeks.
Results: Among the 71 women and 79 men, there was a significant difference in baseline Kansas City Cardiomyopathy Questionnaire (24.5 versus 36.2, respectively; P=0.04) but not Functional Assessment of Chronic Illness Therapy-Palliative Care scale (115.7 versus 120.3; P=0.27) scores. Among those who received the palliative care intervention (33 women and 42 men), women’s quality-of-life score remained lower than that of men after enrollment. Treated men’s scores were significantly higher than those untreated (6-month Kansas City Cardiomyopathy Questionnaire, 68.0 [interquartile range, 52.6–85.7] versus 41.1[interquartile range, 32.0–78.3]; P=0.047), whereas the difference between treated and untreated women was not significantly different (P=0.39). Rates of death and rehospitalization, as well as the composite end point, were similar between treated and untreated women and men.
Conclusions: In the PAL-HF trial, women with heart failure experienced a greater symptom burden and poorer quality of life as compared with men. The change in treated men’s Kansas City Cardiomyopathy Questionnaire score between baseline and 24 weeks was significantly higher than those untreated; this trend was not observed in women. Thus, there may be a sex disparity in response to palliative care intervention, suggesting that sex-specific approaches to palliative care may be needed to improve outcomes.
Purpose: Palliative care is recommended for patients with metastatic cancer, but there has been limited research about embedded palliative care for specific patient populations. We describe the impact of a pilot program that provided routine, early, integrated palliative care to patients with metastatic colorectal cancer.
Methods: Mixed methods pre-post intervention cohort study at an academic cancer center. Thirty control then 30 intervention patients with metastatic colorectal cancer were surveyed at baseline and 1, 3, 6, 9, and 12 months thereafter about symptoms, quality-of-life, and likelihood of cure. We compared survey responses, trends over time, rates of advance care planning, and healthcare utilization between groups. Patients, family caregivers, and clinicians were interviewed.
Results: Patients in the intervention group were followed for an average of 6.5 months and had an average of 3.5 palliative care visits. At baseline, symptoms were mild (average 1.85/10) and 78.2% of patients reported good/excellent quality-of-life. Half (50.9%) believed they were likely to be cured of cancer. Over time, symptoms and quality-of-life metrics remained similar between groups, however intervention patients were more realistic about their likelihood of cure (p = 0.008). Intervention patients were more likely to have a surrogate documented (83.3% vs. 26.7%, p < 0.0001), an advance directive completed (63.3% vs. 13.3%, p < 0.0001), and non-full code status (43.3% vs. 16.7%, p < 0.03). All patients and family caregivers would recommend the program to others with cancer.
Conclusions: We describe the impact of an embedded palliative care program for patients with metastatic colorectal cancer, which improved prognostic awareness and rates of advance care planning.
BACKGROUND: Palliative nursing care provides the best possible quality of life (QoL) for patients who face life-threatening conditions, such as breast cancer, and their families. It seems that coping with breast cancer can affect couples' QoL. Hence, this study aimed to assess the potential role of ways of coping (WOC) in QoL among husbands of women with breast cancer.
METHOD: In this cross-sectional study, 150 men whose wives were affected by non-metastatic breast cancer and were at least 4 months post-diagnosis, were recruited. The Persian version of the WOC questionnaire (WOCQ) and the World Health Organization's QoL brief questionnaire (WHOQoL-BREF) were used to measure WOC and QoL. ThePearson correlation test was applied to assess bivariate correlation of the variables.
FINDINGS: A significant direct correlation was found between the total WHOQoL-BREF score and all subscales of WHOQ, except escape-avoidance coping (r=-0.017, P=0.830). Most dimensions of the WHOQoL-BREF and WOCQ subscales were correlated significantly and directly. Nevertheless, escape-avoidance coping had a significant indirect correlation with the physical dimension of WHOQoL-BREF (r=-0.220, P=0.007).
CONCLUSION: Findings indicated a need for coping-based interventions in palliative nursing to improve QoL in husbands of women with breast cancer.
In this paper, we propose and defend three economic arguments for permitting assisted dying. These arguments are not intended to provide a rationale for legalising assisted suicide or euthanasia in and of themselves; rather, they are supplementary arguments that should not be neglected when considering the ethics of assisted dying. The first argument is that permitting assisted dying allows consenting patients to avoid negative quality-adjusted life years, enabling avoidance of suffering. The second argument is that the resources consumed by patients who are denied assisted dying could instead be used to provide additional (positive) quality-adjusted life years for patients elsewhere in the healthcare system who wish to continue living and to improve their quality of life. The third argument is that organ donation may be an additional potential source of quality-adjusted life years in this context. We also anticipate and provide counterarguments to several objections to our thesis. Taken together, the cumulative avoidance of negative quality-adjusted life years and gain in positive quality-adjusted life years suggest that permitting assisted dying would substantially benefit both the small population that seeks assisted suicide or euthanasia, and the larger general population. As such, denying assisted dying is a lose–lose situation for all patients.
OBJECTIVES: Approximately 70% of Americans would prefer to die at home and avoid hospitalization or intensive care during the terminal phase of illness. Given the wish to die at home, it should follow the majority of Americans achieves their wish. However, recent data indicate ~60% of people dies away from home or hospice care. This article sets out to understand what makes it so difficult to attain what we aspire for in death and provide a starting point for change.
METHOD: The authors reviewed and analysed literature on elements which drive patients to continue treatment even though prospects are grim.
RESULTS: Six elements which combine into a system driving non-peaceful death were identified (western culture, healthcare system, pharmaceutical industry, professionals, family and loves ones, patients themselves) and complemented with three additional factors entrenched in us as humans which make the system particularly difficult to overcome ((rational) decision making, option framing, inability to change).
CONCLUSION: Dying in peace is easier said than done because the cards are stacked against us and we seem to remain unaware of the breadth and depth at which continuing treatment is ingrained in our system.
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.
Background: Large, nationally representative studies of the association between quality of life and survival time in cancer patients in specialized palliative care are missing.
Aim: The aim of this study was to investigate whether symptoms/problems at admission to specialized palliative care were associated with survival and if the symptoms/problems may improve prediction of death within 1 week and 1 month, respectively.
Setting/participants: All cancer patients who had filled in the EORTC QLQ-C15-PAL at admission to specialized palliative care in Denmark in 2010–2017 were included through the Danish Palliative Care Database. Cox regression was used to identify clinical variables (gender, age, type of contact (inpatient vs outpatient), and cancer site) and symptoms/problems significantly associated with survival. To test whether symptoms/problems improved survival predictions, the overall accuracy (area under the receiver operating characteristic curve) for different prediction models was compared. The validity of the prediction models was tested with data on 5,508 patients admitted to palliative care in 2018.
Results: The study included 30,969 patients with an average age of 68.9 years; 50% were women. Gender, age, type of contact, cancer site, and most symptoms/problems were significantly associated with survival time. The predictive value of symptoms/problems was trivial except for physical function, which clearly improved the overall accuracy for 1-week and 1-month predictions of death when added to models including only clinical variables.
Conclusion: Most symptoms/problems were significantly associated with survival and mainly physical function improved predictions of death. Interestingly, the predictive value of physical function was the same as all clinical variables combined (in hospice) or even higher (in palliative care teams).
BACKGROUND: To compare quality of life (QoL) of patients receiving early palliative care (EPC) vs. standard oncologic care (SOC).
METHODS: Pragmatic, multicenter, randomized trial at five University and Community Hospital Cancer Centers in Northern Italy. Advanced non-small cell lung, gastric, pancreatic and biliary tract cancer patients diagnosed within the previous 8 weeks. In the EPC arm, visits were performed systematically by a dedicated physician/nurse palliative care (PC) team, who assessed physical and psychosocial symptoms, and enacted the necessary services. In the SOC arm, PC visits were only carried out if requested. The primary outcome was the difference in the change of QoL [Functional Assessment of Cancer Therapy-General measure (FACT-G)] from baseline to 12 weeks in the two groups.
RESULTS: From November 2014 to March 2016, 281 patients were enrolled (142 EPC, 139 SOC); 218 completed FACT-G at 12 weeks. Baseline demographic and clinical characteristics were similar for the two groups. Values of FACT-G at baseline and 12 weeks were 72.3 (SD 12.6) and 70.1 (SD 15.5) for patients enrolled in the EPC arm, vs. 71.7 (SD 14.7) and 69.6 (SD 15.5) for the SOC arm, but the change scores did not differ significantly between groups. In the multivariable analysis, adjusting for QoL at baseline, two potential prospective prognostic factors were statistically significant: lung cancer (P=0.03) and interaction of living without a partner and intervention arm (P=0.01). Dying within 6 months (P<0.001) was also statistically significant.
CONCLUSIONS: In this study, EPC did not improve QoL in advanced cancer patients, but our findings highlight aspects which may guide future research on EPC.
BACKGROUND: People with heart failure report various symptoms and show a trajectory of periodic exacerbations and recoveries, where each exacerbation event may lead to death. Current clinical practice guidelines indicate the importance of discussing future care strategies with people with heart failure. Advance care planning (ACP) is the process of discussing an individual's future care plan according to their values and preferences, and involves the person with heart failure, their family members or surrogate decision-makers, and healthcare providers. Although it is shown that ACP may improve discussion about end-of-life care and documentation of an individual's preferences, the effects of ACP for people with heart failure are uncertain.
OBJECTIVES: To assess the effects of advance care planning (ACP) in people with heart failure compared to usual care strategies that do not have any components promoting ACP.
SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, CINAHL, Social Work Abstracts, and two clinical trials registers in October 2019. We checked the reference lists of included studies. There were no restrictions on language or publication status.
SELECTION CRITERIA: We included randomised controlled trials (RCTs) that compared ACP with usual care in people with heart failure. Trials could have parallel group, cluster-randomised, or cross-over designs. We included interventions that implemented ACP, such as discussing and considering values, wishes, life goals, and preferences for future medical care. The study participants comprised adults (18 years of age or older) with heart failure.
DATA COLLECTION AND ANALYSIS: Two review authors independently extracted outcome data from the included studies, and assessed their risk of bias. We contacted trial authors when we needed to obtain missing information.
MAIN RESULTS: We included nine RCTs (1242 participants and 426 surrogate decision-makers) in this review. The meta-analysis included seven studies (876 participants). Participants' mean ages ranged from 62 to 82 years, and 53% to 100% of the studies' participants were men. All included studies took place in the US or the UK. Only one study reported concordance between participants' preferences and end-of-life care, and it enrolled people with heart failure or renal disease. Owing to one study with small sample size, the effects of ACP on concordance between participants' preferences and end-of-life care were uncertain (risk ratio (RR) 1.19, 95% confidence interval (CI) 0.91 to 1.55; participants = 110; studies = 1; very low-quality evidence). It corresponded to an assumed risk of 625 per 1000 participants receiving usual care and a corresponding risk of 744 per 1000 (95% CI 569 to 969) for ACP. There was no evidence of a difference in quality of life between groups (standardised mean difference (SMD) 0.06, 95% CI -0.26 to 0.38; participants = 156; studies = 3; low-quality evidence). However, one study, which was not included in the meta-analysis, showed that the quality of life score improved by 14.86 points in the ACP group compared with 11.80 points in the usual care group. Completion of documentation by medical staff regarding discussions with participants about ACP processes may have increased (RR 1.68. 95% CI 1.23 to 2.29; participants = 92; studies = 2; low-quality evidence). This corresponded to an assumed risk of 489 per 1000 participants with usual care and a corresponding risk of 822 per 1000 (95% CI 602 to 1000) for ACP. One study, which was not included in the meta-analysis, also showed that ACP helped to improve documentation of the ACP process (hazard ratio (HR) 2.87, 95% CI 1.09 to 7.59; participants = 232). Three studies reported that implementation of ACP led to an improvement of participants' depression (SMD -0.58, 95% CI -0.82 to -0.34; participants = 278; studies = 3; low-quality evidence). We were uncertain about the effects of ACP on the quality of communication when compared to the usual care group (MD -0.40, 95% CI -1.61 to 0.81; participants = 9; studies = 1; very low-quality evidence). We also noted an increase in all-cause mortality in the ACP group (RR 1.32, 95% CI 1.04 to 1.67; participants = 795; studies = 5). The studies did not report participants' satisfaction with care/treatment and caregivers' satisfaction with care/treatment.
AUTHORS' CONCLUSIONS: ACP may help to increase documentation by medical staff regarding discussions with participants about ACP processes, and may improve an individual's depression. However, the quality of the evidence about these outcomes was low. The quality of the evidence for each outcome was low to very low due to the small number of studies and participants included in this review. Additionally, the follow-up periods and types of ACP intervention were varied. Therefore, further studies are needed to explore the effects of ACP that consider these differences carefully.
Background: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-life of this population.
Aim: To describe the experience and support needs of caring for children with life-limiting conditions and examine the level of distress and quality-of-life experienced by parents.
Design: Cross-sectional, prospective, quantitative study guided by an advisory group. Participants completed a survey that included demographics and self-report outcome measures of unmet support needs, appraisal of caregiving, psychological distress and quality-of-life. Bivariate correlation analyses were performed to examine for associations between measures.
Setting/participants: Parents currently caring for one or more children (<=18 years) with a life-limiting condition and registered with a paediatric palliative care service (Australia).
Results: In total, 143 parents (88% female) completed the questionnaire (36% RR). Compared with population norms, participants reported low quality-of-life, high carer burden and high psychological distress. Almost half (47%) of the sample met the criteria for one or more diagnoses of clinically elevated stress, anxiety or depression. There were significant associations between the psychosocial outcome variables; carer strain and depression had the strongest correlations with quality-of-life (r = –.63, p < .001, for both). Participants also reported multiple unmet needs related to emotional and practical support.
Conclusions: This study contributes to the growing body of evidence on paediatric palliative care, specifically that parents caring for a child with a life-limiting condition report high levels of distress and burden, low quality-of-life and need more emotional and practical support targeted at their unmet needs. Paediatric palliative care services should routinely assess parent mental health and provide appropriate support.
Background: Some evidence suggests the wish to hasten death is related to poor health-related quality of life. Deficits in perceived dignity and self-efficacy are risk factors for wish to hasten death that also impact health-related quality of life.
Aim: To compare perceived health-related quality of life, dignity and self-efficacy in patients with advanced cancer who either do (case group) or do not (control group) express a wish to hasten death. Cases and controls were matched on sociodemographic and functional characteristics.
Design: A comparative cross-sectional study.
Participants: A total of 153 adult patients with advanced cancer were assessed for wish to hasten death using the Desire for Death Rating Scale. Scores >= 1 indicate some degree of wish to hasten death (case group, n = 51), and score = 0 implies no wish to hasten death (control group, n = 102). Assessments included health-related quality of life using the European Organization for Research and Treatment of Cancer Quality-of-Life Core 15-Item Palliative Questionnaire, perceived loss of dignity using the Patient Dignity Inventory and self-efficacy using the General Self-Efficacy Scale.
Results: Patients with a wish to hasten death had worse emotional functioning (p < 0.001), greater perceived loss of dignity (p < 0.001) and lower self-efficacy (p = 0.001). There was no difference in most physical symptoms. Perceived overall health-related quality of life was significantly worse for those with a clinically relevant wish to hasten death (p = 0.023) and marginally worse for the case group than the control group (p = 0.052).
Conclusion: Patients with wish to hasten death showed lower perceived dignity, self-efficacy and emotional quality of life than patients without wish to hasten death without necessarily perceiving worse physical symptoms.
Background: Renal failure is a chronic disease that can seriously affect quality of life (QOL). Health-Related QOL represents the physical, psychological, and social domains of health that are influenced by a person's experience, beliefs, expectations, and perceptions. The aim of this study is to explore QOL of Stage 5 chronic kidney disease (CKD) patients on maintenance hemodialysis (MHD) in South India.
Materials and Methods: This was a cross-sectional observational study conducted among patients with CKD undergoing MHD at 11 major centers in South India. Demographic data were collected using a predesigned questionnaire. QOL index was measured using the 26-item WHOQOL-BREF questionnaire, and statistical analysis was carried out using the SPSS version 24 (Academy of Medical Sciences, Kannur, Kerala, India).
Results: Five hundred and three patients undergoing MHD were enrolled, and the following QOL scores were recorded: social relationship (51.65 ± 21.03), environmental (46.91 ± 19.29), psychological (41.07 ± 20.30), and physical health (40.17 ± 17.05). QOL of patients declined with aging in all four domains. Being male, younger, educated, and unmarried appeared to have a favorable effect on several aspects of patients' QOL.
Conclusion: The evaluation of QOL in CKD patients undergoing hemodialysis showed that it was relatively compromised. Because the patients had a chronic, progressive irreversible disease, the most affected was physical domain. Age, education, employment, and marital status were found to affect one or more domains of QOL. Age and education are significant independent variables; as the age increases, QOL decreases, and higher the education better the QOL.
Background: Residents living and dying in long-term care (LTC) homes represent one of society's most frail and marginalized populations of older adults, particularly those residents with advanced dementia who are often excluded from activities that promote quality of life in their last months of life. The purpose of this study is to evaluate the feasibility, acceptability, and effects of Namaste Care: an innovative program to improve end-of-life care for people with advanced dementia.
Methods: This study used a mixed-method survey design to evaluate the Namaste Care program in two LTC homes in Canada. Pain, quality of life, and medication costs were assessed for 31 residents before and 6 months after they participated in Namaste Care. The program consisted of two 2-h sessions per day for 5 days per week. Namaste Care staff provided high sensory care to residents in a calm, therapeutic environment in a small group setting. Feasibility was assessed in terms of recruitment rate, number of sessions attended, retention rate, and any adverse events. Acceptability was assessed using qualitative interviews with staff and family.
Results: The feasibility of Namaste Care was acceptable with a participation rate of 89%. However, participants received only 72% of the sessions delivered and only 78% stayed in the program for at least 3 months due to mortality. After attending Namaste Care, participants' pain and quality of life improved and medication costs decreased. Family members and staff perceived the program to be beneficial, noting positive changes in residents. The majority of participants were very satisfied with the program, providing suggestions for ongoing engagement throughout the implementation process.
Conclusions: These study findings support the implementation of the Namaste Care program in Canadian LTC homes to improve the quality of life for residents. However, further testing is needed on a larger scale.