The practice of medically assisted dying has long been contentious, and the question of what to call it has become increasingly contentious as well. Particularly among U.S. proponents of legalizing the practice, there has been a growing push away from calling it “physician-assisted suicide,” with assertions that medically assisted dying is fundamentally different from suicide. Digging deeper into this claim about difference leads to an examination of the difference between two kinds of suffering—suffering from physical conditions and suffering from psychological conditions—and therefore leads also toward an examination of whether requests for medical assistance in dying by those suffering from psychological conditions and those suffering from physical conditions should be painted with the same brush .
In this article, I aim both to illuminate some of the considerations that ought to be included in discussions related to medically assisted dying and to shed light on what the indirect effects of such discussions can be. I consider some of the reasons commonly given for holding that suicide and medically assisted dying differ fundamentally and then whether the conclusion that medically assisted dying should not be called “suicide” follows from the premises. I ask what else might justify the conclusion that the two acts ought to be called by different names, and I examine possible justifications for accepting this premise, as well as what justifications might exist for emphasizing how the acts are alike. Finally, I argue that we should be cautious before concluding that medically assisted dying should not be called “suicide.” We need more evidence either that the two acts are fundamentally different or that emphasizing differences between them is not likely to do more harm than good .
Essai d'une approche comparative entre le droit français et le droit sénégalais. L'une des particularités du 21e siècle durant ces dernières décennies est indéniablement le progrès scientifique qui a réalisé de grandes prouesses dans plusieurs domaines, comme celui de la médecine. La personne humaine est au coeur de ces bouleversements scientifiques et la question de sa vulnérabilité se pose lorsqu'il s'agit plus particulièrement de l'enfant malade.
Au-delà des traitements médicaux, la protection de l'enfant malade implique une prise en compte de la recherche médicale et comporte dès lors des enjeux internationaux qui méritent une étude comparative notamment entre le droit français et le droit sénégalais.
In the partnership between the medical departments of Würzburg University, Germany, and Nagasaki University, Japan, palliative care is a relevant topic. The aim of the study was to perform a comparative analysis of the hospital-based palliative care teams in Würzburg (PCT-W) and Nagasaki (PCT-N). Survey of staff composition and retrospective analysis of PCT patient charts in both PCTs were conducted. Patients self-assessed their symptoms in PCT-W and in Radiation Oncology Würzburg (RO-W). The (negative) quality indicator 'percentage of deceased hospitalised patients with PCT contact for less than 3 days before death' (Earle in Int J Qual Health Care 17(6):505-509, 2005) was analysed. Both PCTs follow a multidisciplinary team approach. PCT-N saw 410 cancer patients versus 853 patients for PCT-W (22.8% non-cancer patients). The Eastern Cooperative Oncology Group Performance Status at first contact with PCT-N was 3 or 4 in 39.3% of patients versus 79.0% for PCT-W. PCT-N was engaged in co-management longer than PCT-W (mean 20.7 days, range 1-102 versus mean 4.9 days, range 1-48). The most frequent patient-reported psychological symptom was anxiety (family anxiety: 98.3% PCT-W and 88.7% RO-W, anxiety 97.9% PCT-W and 85.9% RO-W), followed by depression (98.2% PCT-W and 80.3% RO-W). In 14 of the 148 deceased patients, PCT-N contact was initiated less than 3 days before death (9.4%) versus 121 of the 729 deceased PCT-W patients (16.6%). Psychological needs are highly relevant in both Germany and Japan, with more than 85% anxiety and depression in patients in the Japanese IPOS validation study (Sakurai in Jpn J Clin Oncol 49(3):257-262, 2019). This should be taken into account when implementing PCTs.
OBJECTIVES: Our aim was to (1) describe the clinical characteristics and symptoms of people diagnosed with dementia at the time of admission to inpatient palliative care; and (2) compare the nature and severity of these palliative care–related problems to patients with other chronic diseases.
DESIGN: Descriptive study using assessment data on point of care outcomes (January 1, 2013, to December 31, 2018).
SETTING: A total of 129 inpatient palliative care services participating in the Australian Palliative Care Outcomes Collaboration.
PARTICIPANTS: A total of 29,971 patients with a primary diagnosis of dementia (n = 1,872), lung cancer (n = 19,499), cardiovascular disease (CVD, n = 5,079), stroke (n = 2,659), or motor neuron disease (MND, n = 862).
MEASUREMENTS: This study reported the data collected at the time of admission to inpatient palliative care services including patients' self-rated levels of distress from seven common physical symptoms, clinician-rated symptom severity, functional dependency, and performance status. Other data analyzed included number of admissions, length of inpatient stay, and palliative care phases.
RESULTS: At the time of admission to inpatient palliative care services, relative to patients with lung cancer, CVD, and MND, people with dementia presented with lower levels of distress from most symptoms (odds ratios [ORs] range from .15 to .80; P < .05 for all) but higher levels of functional impairment (ORs range from 3.02 to 8.62; P < .001 for all), and they needed more assistance with basic activities of daily living (ORs range from 3.83 to 12.24; P < .001 for all). The trends were mostly the opposite direction when compared with stroke patients. Patients with dementia tended to receive inpatient palliative care later than those with lung cancer and MND.
CONCLUSION: The unique pattern of palliative care problems experienced by people with dementia, as well as the skills of the relevant health services, need to be considered when deciding on the best location of care for each individual. Access to appropriately trained palliative care clinicians is important for people with high levels of physical or psychological concerns, irrespective of the care setting or diagnosis.
Background: Voluntary work plays a significant role in hospice care, but international research has mainly been conducted on the mental health and fear of death of paid hospice staff. The aim of the present study was to compare the Hungarian hospice volunteers with paid employees with regard to attitudes and fear of death, as well as mental health in order to see their role in hospice work and their psychological well-being more clearly.
Methods: The target population of the cross-sectional questionnaire study was hospice care providers in Hungary (N = 1255). The response rate was 15.5% (N = 195); 91.8% (N = 179) of them were women. The mean age of female hospice workers was 45.8 years (SD = 10.46 years, range: 23–73 years). One-quarter (27.9%, N = 50) of the female respondents were volunteers. The instruments were: the Multidimensional Fear of Death Scale, the Perceived Stress Scale, the WHO-5 Well-Being Index, and a shortened versions of the Beck Depression Inventory and the Maastricht Vital Exhaustion Questionnaire.
Results: Volunteers scored significantly lower on 5 dimensions of fear of death than paid employees, and showed significantly lower levels of vital exhaustion and significantly higher levels of psychological well-being than paid employees. Fear of the dying process was associated with an increased perceived stress, depressive symptoms, and vital exhaustion in both groups. Psychological well-being showed a significant negative, moderate correlation with four aspects of fear of death among paid staff; this pattern did not appear in the volunteer group. In addition, the association between fear of premature death and perceived stress, vital exhaustion, and depressive symptoms was more pronounced is case of paid workers.
Conclusion: Higher levels of psychological well-being and lower levels of fear of death among hospice volunteers suggest that they are less exhausted than paid employees. Increasing the recruitment of volunteers in hospices may help reduce the overload and exhaustion of paid employees.
OBJECTIVE: The aim of this study is to assess the impact of specialized pediatric palliative care (PPC) on neonates with life-limiting conditions compared to standard care.
STUDY DESIGN: MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September 2018. Randomized clinical trials, experimental or observational studies, and secondary administrative database analyses published in English, Spanish, French, and German were included. Two independent reviewers extracted data, and used the Newcastle-Ottawa Scale and the Cochrane Risk of Bias Tool for quality analysis. Discrepancies were resolved as a team.
RESULTS: From the 37,788 records obtained, only eight articles met the inclusion criteria. A meta-analysis was not possible due to the heterogeneity in how the outcomes were defined; however, a qualitative synthesis of the results was possible; organizing outcomes into eight different categories: psychological, social and spiritual support; communication; location of care; symptom management; bereavement care; predicted versus actual neonatal outcomes; and parental coping, stress, and satisfaction.
CONCLUSION: Specialized versus may have an impact on neonates with life-limiting conditions and their families. More studies that evaluate the impact of specialized versus in neonates with sound statistical analysis is warranted.
BACKGROUND: We aim to describe the access to palliative care (PC) in hospitalized children during end-of-life care and compare the circumstances surrounding the deaths of hospitalized children as a basis for implementing a pediatric PC program at our institution.
METHODS: We performed a retrospective chart review of deceased pediatric patients at a tertiary referral hospital in Colombia. The study group was selected by randomly drawing a sample of 100 observations from the 737 deceased children from 2013 to 2016. A 1:1 propensity score (PS) matching was performed to compare the characteristics and outcomes between PC and non-PC treated patients.
RESULTS: We included 87 patients. After PS matching, we found that patients under the care of non-PC physicians were more likely to die in the pediatric intensive care unit (non-PC: 6/10 vs PC: 1/10; P = .02), to be on vasopressor agents and mechanical ventilation (non-PC: 7/10 vs PC: 1/10; P = .02), and to receive cardiopulmonary resuscitation at the end of life (non-PC: 5/10 vs PC: 0/10; P = .03). In contrast, a significantly higher proportion of patients under the care of the pediatric PC team died with comfort measures (non-PC: 2/10 vs 8/10; P = .02) and nonescalation of care in physician orders (non-PC: 5/10 vs PC: 10/10; 0.03).
CONCLUSION: In this study, only 10 of 87 patients were treated by the pediatric PC team at the end of life. The latter finding is concerning and is a call to action to improve access to pediatric PC at our institution.
Caregiving and bereavement outcomes are strongly influenced by socio-cultural context. Past research has found higher levels of caregiver burden and psychological morbidity in Portuguese compared to Brazilian caregivers. This study compared Brazilian and Portuguese family caregivers in palliative care to identify differences in psychological morbidity and caregiver burden and their relationship with psychosocial factors such as sociodemographic variables, circumstances of end-of-life care and dying, social support, family functioning, and perception of quality of care. Prospective data were collected from convenience samples of family caregivers in Brazil (T0 n = 60; T1 n = 35) and Portugal (T0 n = 75; T1 n = 29) at two separate time points—during caregiving (T0), and during the first two months of bereavement (T1). The study samples consisted mostly of women, offspring, and spouses. In both countries, family caregivers devoted most of their day to taking care of their sick relatives and reported a lack of practical support. Portuguese caregivers had higher levels of burden than Brazilian caregivers, and in both populations a greater burden was associated with more psychopathological symptoms. Higher caregiver burden among Portuguese caregivers was associated with the circumstances of death and the perceived lack of emotional support. Among Portuguese caregivers, symptomatology persisted during bereavement, reaching significantly higher levels of anxiety, somatization, and peritraumatic symptoms compared to the Brazilian sample. These results show differences between family caregiver samples in Portugal and Brazil during the bereavement process. Understanding the underlying cultural patterns and mechanisms requires future research.
OBJECTIVES: Advance care planning in young-onset dementia largely remains a blind spot within current literature. This study aimed to explore the engagement in and the conceptualization of advance care planning from the perspective of family caregivers of persons with young-onset dementia and to identify potential similarities and differences in this area between American and Belgian persons with young-onset dementia and their family caregivers.
DESIGN: An exploratory qualitative study.
SETTING AND PARTICIPANTS: We purposively sampled adult family caregivers of persons with young-onset dementia; our respondents were 13 American and 15 Belgian caregivers with varying familial relationships to the patient.
METHODS: We conducted 28 semi-structured interviews, using the same interview guide for American and Belgian respondents. Verbatim transcripts were analysed through the method of constant comparative analysis.
RESULTS: Important similarities between American and Belgian respondents were restricted knowledge of advance care planning, limited communication about advance directives, and their recommendation for professionals to timely initiate advance care planning. Major differences were attention paid to those end-of-life decisions depicted in the legislature of their respective countries, American caregivers placed higher emphasis on financial planning than their Belgian peers, and, in the case of consulting professionals for advance directives, American caregivers turned to lawyers, whereas Belgian caregivers relied on physicians.
CONCLUSIONS AND IMPLICATIONS: Specific nuances and challenges in terms of advance care planning in young-onset dementia arise from a particular societal and legal context on the one hand, and from patients' and caregivers' younger age on the other. Professionals' awareness of and responsiveness to these specificities could facilitate the advance care planning process. Based on our interpretation of results, several recommendations for practice and policy are made.
BACKGROUND: Immigrants to North America receive more interventions at end of life potentially due to knowledge gaps. The primary objective of this study was to measure and describe levels of perceived knowledge about palliative care among immigrants to the United States (US) compared to those born in the US. Our secondary objective was to identify trusted sources for seeking information about palliative care among immigrants and compare these trusted sources with those born in the US. We hypothesized that immigrants would have less knowledge of palliative care than those born in US and would trust different sources for information about palliative care.
METHODS: We analyzed data from the nationally representative 2018 Health Information National Trends Survey (HINTS 5, cycle 2). Questionnaires were administered via mail between January and May 2018 to a population-based sample of adults. The primary outcome of interest was assessed using the item "How would you describe your level of knowledge about palliative care?" The secondary outcome of interest was determined using the item "Imagine you had a strong need to get information about palliative care, which of the following would you most trust as a source of information about palliative care?" Descriptive statistics were calculated, and bivariate analyses run between the outcomes of interest and sociodemographic characteristics (age, sex, education, race/ethnicity, nativity, fluency with English). Multivariable logistic regressions were conducted to assess the role of nativity, controlling for relevant sociodemographic variables. Jackknife weighting was used to generate population-level estimates.
RESULTS: About 70% of those born in the US and 77% of immigrants (weighted) responded that they had "never heard of palliative care." Trusted sources of palliative care were very similar between the groups (all P>0.05). Both groups' preferred trusted source of palliative care knowledge was "health care provider," with over 80% of respondents in each group selecting this option. Printed materials and social media were the least popular trusted sources among both groups. After adjusting for relevant sociodemographic characteristics, we found no association between poor knowledge of palliative care and nativity (P=0.22). Female respondents had 2.5-fold increased odds of reporting low levels of perceived knowledge of palliative care (OR =2.58, 95% CI, 1.76-3.78; P<0.001). Education was an important predictor of perceived knowledge of palliative care; as education level increased, so did perceived knowledge of palliative care (P<0.001).
CONCLUSIONS: Perceived knowledge of palliative care is poor generally, regardless of birthplace. Trusted sources for palliative care are similar between immigrants and those born in the US. Education is important and is a strong predictor of perceived knowledge of palliative care. Women perceive they have lower levels of knowledge of palliative care (PC) than men. Differences in end of life care between immigrants and non-immigrants cannot be explained by knowledge differences.
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.
Importance: Growing evidence shows that palliative care (PC) improves treatment outcomes in patients with heart failure (HF), but few large-scale studies have prospectively evaluated the processes and outcomes associated with PC consultation for such patients in the real world.
Objective: To characterize processes and outcomes of PC consultations for hospitalized patients with HF compared with patients with cancer.
Design, Setting, and Participants: This cohort study of inpatient encounters at community and academic hospitals in the Palliative Care Quality Network enrolled participants between 2013 and 2017. Of a total of 135 197 patients, 57 272 adults with a primary diagnosis of HF or cancer receiving PC consultation were enrolled. Data analysis was performed from April 2018 to December 2019.
Exposures: Primary diagnosis of HF or cancer.
Main Outcomes and Measures: Symptom improvement and changes in care planning documentation after PC consultation.
Results: At the time of consultation, patients with HF were older (mean age, 75.3 years [95% CI, 75.0-75.5 years] vs 65.2 years [95% CI, 65.0-65.3 years]; P < .001), had lower Palliative Performance Scale scores (mean, 35.6% [95% CI, 35.3%-35.9%] vs 42.4% [95% CI, 42.2%-42.6%]; P < .001), and were more likely to be in a critical care unit (5808 of 16 741 patients [35.3%] vs 4985 of 40 531 patients [12.5%]; P < .001) or a telemetry or step-down unit (5802 of 16 741 patients [35.2%] vs 7651 of 40 531 patients [19.2%]; P < .001) compared with patients with cancer. Patients with HF were less likely than patients with cancer to be referred to PC within 24 hours of admission (6773 of 16 741 patients [41.2%] vs 19 348 of 40 531 patients [49.0%]; P < .001) and had longer hospitalizations before receiving PC consultation requests (mean, 4.6 days [95% CI, 4.4-4.8 days] vs 3.9 days [95% CI, 3.8-4.0 days]; P < .001). Patients with HF were referred less frequently for symptoms other than pain (1686 of 16 488 patients [10.2%] vs 8587 of 39 609 patients [21.7%]; P < .001), but were equally likely to report improvements in anxiety (odds ratio, 0.85; 95% CI, 0.71-1.02; P = .08) and more likely to report improvements in dyspnea (odds ratio, 2.17; 95% CI, 1.83-2.57; P < .001) compared with patients with cancer. Patients with HF were less likely than those with cancer to be discharged alive (odds ratio, 0.78; 95% CI, 0.64-0.96; P = .02) or to be referred to hospice (odds ratio, 0.50; 95% CI, 0.47-0.53; P < .001).
Conclusions and Relevance: These findings suggest that PC referral comes late for patients with HF and is used primarily to discuss care planning. Practitioners caring for patients with HF should consider involving PC experts earlier for symptom management.
Background: Supportive and palliative care worldwide is recognized as one of the six main cancer control bases and plays an important role in managing the complications of cancer. Limited studies have been published in the field of this policy analysis in the world.
Aim: This study aimed to analysis the policy-making process of supportive and palliative cancer care in three countries.
Methodology: This qualitative study is a part of a comparative study. The data were collected through reviewing scientific and administrative documents, the World Health Organization website and reports, government websites, and other authoritative websites. Searches were done through texts in English and valid databases, in the period between 2000 and 2018. To investigate the policy process, heuristic stages model is implemented consisting of the four stages: agenda setting, policy formulation, policy implementation, and policy evaluation.
Results: The findings of the study were categorized based on the conceptual model used in four areas related to the policy process, including agenda setting, policy formulation, policy implementation, and evaluation of cancer palliative care policies.
Conclusion: Several factors are involved in how cancer palliative care policy is included in policy-makers' agenda, understanding a necessity, raising public awareness, and acceptance as a result of sensing the physical and nonphysical care outcomes. The stages of development, implementation, and evaluation of palliative care in countries regardless of existing differences are a function of the health system and context of each country.
OBJECTIVES: Subjective well-being has been associated with decreased work burnout and elevated work engagement. We investigated the impact of hope and meaning in life on subjective well-being among workers in a hospice care setting. Comparison was made to health-care workers in a rehabilitation unit.
METHODS: Thirty-five hospice care workers were surveyed and their responses compared with those of 36 rehabilitation workers. Survey instruments measuring hope, meaning in life, work engagement, and satisfaction with life were utilized.
RESULTS: Individuals working in a hospice care center have significantly higher levels of work engagement than their counterparts in rehabilitation. For both groups, hope was significantly related to subjective well-being. For hospice care but not rehabilitation workers, meaning in life was also related to subjective well-being. Multivariate analysis showed that hope and meaning in life were independent factors predicting subjective well-being in hospice care workers.
SIGNIFICANCE OF RESULTS: Hospice care workers are highly engaged in their work despite the challenging nature of their work. What characterizes these workers is a level of subjective well-being that is related to both meaning in life and hope. Maintaining a high level of subjective well-being may be an important factor in preventing burnout among those working in hospice care settings.
Background: Palliative care is associated with improved symptom control and quality of life in people with heart failure. There is conflicting evidence as to whether it is associated with a greater likelihood of death at home in this population. The objective of this study was to describe the delivery of newly initiated palliative care services in adults who die with heart failure and measure the association between receipt of palliative care and death at home compared with those who did not receive palliative care.
Methods and Results: We performed a population-based cohort study using linked health administrative data in Ontario, Canada of 74 986 community-dwelling adults with heart failure who died between 2010 and 2015. Seventy-five percent of community-dwelling adults with heart failure died in a hospital. Patients who received any palliative care were twice as likely to die at home compared with those who did not receive it (adjusted odds ratio 2.12 [95% CI, 2.03–2.20]; P<0.01). Delivery of home-based palliative care had a higher association with death at home (adjusted odds ratio 11.88 [95% CI, 9.34–15.11]; P<0.01), as did delivery during transitions of care between inpatient and outpatient care settings (adjusted odds ratio 8.12 [95% CI, 6.41–10.27]; P<0.01). Palliative care was most commonly initiated late in the course of a person's disease (=30 days before death, 45.2% of subjects) and led by nonspecialist palliative care physicians 61% of the time.
Conclusions: Most adults with heart failure die in a hospital. Providing palliative care near the end-of-life was associated with an increased likelihood of dying at home. These findings suggest that scaling existing palliative care programs to increase access may improve end-of-ife care in people dying with chronic noncancer illness.
BACKGROUND: Increasing life expectancy for people with an intellectual disability (ID) is resulting in more persons with cancer and a greater need for end-of-life (EoL) care. There is a need for knowledge of health care utilisation over the last year of life to plan for resources that support a high quality of care for cancer patients with ID. Therefore, the aims of the study were to compare (1) health care utilisation during the last year of life among cancer patients with ID and cancer patients without ID and (2) the place of death in these two groups.
METHODS: The populations were defined using national data from the period 2002-2015, one with ID (n = 15 319) and one matched 5:1 from the general population (n = 72 511). Cancer was identified in the Cause of Death Register, resulting in two study cohorts with 775 cancer patients with ID (ID cohort) and 2968 cancer patients from the general population (gPop cohort).
RESULTS: Cancer patients with ID were less likely than those without ID to have at least one visit in specialist inpatient (relative risk 0.90, 95% confidence interval 0.87-0.93) and outpatient (0.88, 0.85-0.91) health care, during their last year of life. Those with ID were more likely to have no or fewer return visits than the patients in the gPop cohort (5 vs. 11, P < 0.001), also when stratifying on sex and median age at death. Most cancer patients with ID died in group homes or in their own homes and fewer in hospital (31%) as compared with cancer patients in the gPop cohort (55%, 0.57, 0.51-0.64).
CONCLUSIONS: Older cancer patients with ID were less likely to be assessed or treated by a specialist. This may suggest that people with ID have unaddressed or untreated distressing symptoms, which strongly contributes to a decreased quality of EoL care and a poor quality of life. There is a need to acquire further knowledge of the EoL care and to focus on adapting and evaluating quality indicators for older cancer patients with ID.
BACKGROUND: Hospice care has a positive effect on medical costs. The correlation between survival time after receiving hospice care and medical costs has not been previously investigated in the literature on Taiwan. This study aimed to compare the differences in medical costs between traditional care and hospice care among end-of-life patients with cancer.
METHODS: Data from Taiwan's National Health Insurance program on all patients who had passed away between 2010 and 2013 were used. Those whose year of death was between 2010 and 2013 were defined as end-of-life patients. The patients were divided into two groups: traditional care and hospice care. We then analyzed the differences in end-of-life medical cost between the two groups.
RESULTS: From 2010 to 2013, the proportion of patients receiving hospice care significantly increased from 22.2% to 41.30%. In the hospice group, compared with the traditional group, the proportions of hospital stays over 14 days and deaths in a hospital were significantly higher, but the proportions of outpatient clinic visits; emergency room admissions; intensive care unit admissions; use of ventilator; use of cardiopulmonary resuscitation; and use of hemodialysis, surgery, and chemotherapy were significantly lower. Total medical costs were significantly lower. A greater number of days of survival for end-of-life patients when receiving hospice care results in higher saved medical costs.
CONCLUSION: Hospice care can effectively save a large amount of end-of-life medical costs, and more medical costs are saved when patients are referred to hospice care earlier.
OBJECTIVES: To describe and compare self-perceived end-of-life (EOL) knowledge, attitudes, behaviors, and practices of intensive care unit (ICU) nurses compared to oncology nurses.
SAMPLE & SETTING: 126 Israeli nurses (79 oncology nurses and 47 ICU nurses) who were members of the Israel Association of Cardiology and Critical Care Nurses and the Israeli Oncology Nurses Organization.
METHODS & VARIABLES: This cross-sectional study used an online survey to gather demographic information, clinical setting, and study measures (EOL knowledge, attitudes, behaviors, and practices).
RESULTS: Oncology nurses and ICU nurses showed moderate levels of self-perceived knowledge and attitudes toward palliative care; however, their self-reported behaviors were low. Oncology nurses scored slightly higher than ICU nurses on knowledge and attitudes but not behaviors, although the difference was not statistically significant.
IMPLICATIONS FOR NURSING: Contrary to the current authors' expectations, oncology nurses and ICU nurses have similar levels of knowledge, attitudes, and behaviors regarding palliative care. Nurses in both settings need to be better trained and empowered to provide such care.
BACKGROUND: Evaluations of complex interventions compared to usual care provided in palliative care are increasing. Not describing usual care may affect the interpretation of an intervention's effectiveness, yet how it can be described remains unclear.
AIM: To demonstrate the feasibility of using multi-methods to describe usual care provided in randomised controlled trials (RCTs) of complex interventions, shown within a feasibility cluster RCT.
DESIGN: Multi-method approach comprising usual care questionnaires, baseline case note review and focus groups with ward staff completed at study end. Thematic analysis of qualitative data, descriptive statistics of quantitative data, followed by methodological triangulation to appraise approach in relation to study aim.
SETTING/PARTICIPANTS: Four general medical wards chosen from UK hospitals. Purposive sampling of healthcare professionals for usual care questionnaires, and focus groups. Review of 20 patients’ notes from each ward who died during admission or within 100 days of discharge.
RESULTS: Twenty-three usual care questionnaires at baseline, two focus groups comprising 20 healthcare professionals and 80 case note reviews. Triangulation of findings resulted in understanding the usual care provided to the targeted population in terms of context, structures, processes and outcomes for patients, families and healthcare professionals. Usual care was described, highlighting (1) similarities and embedded practices, (2) heterogeneity and (3) subtle changes in care during the trial within and across sites.
CONCLUSIONS: We provide a feasible approach to defining usual care that can be practically adopted in different settings. Understanding usual care enhances the reliability of tested complex interventions, and informs research and policy priorities.
OBJECTIVES: To describe and compare characteristics of care provided at the end of life for children with chronic complex conditions and neonates who died in an ICU with those who died outside an ICU.
DESIGN: Substudy of a nation-wide retrospective chart review.
SETTING: Thirteen hospitals, including 14 pediatric and neonatal ICUs, two long-term institutions, and 10 community-based organizations in the three language regions of Switzerland.
PATIENTS: One hundred forty-nine children (0-18 yr) who died in the years 2011 or 2012. Causes of death were related to cardiac, neurologic, oncological, or neonatal conditions.
MEASUREMENTS AND MAIN RESULTS: Demographic and clinical characteristics, therapeutic procedures, circumstances of death, and patterns of decisional processes were extracted from the medical charts. Ninety-three (62%) neonates (median age, 4 d) and children (median age, 23 mo) died in ICU, and 56 (38%) with a median age of 63 months outside ICU. Generally, ICU patients had more therapeutic and invasive procedures, compared with non-ICU patients. Changes in treatment plan in the last 4 weeks of life, such as do-not-resuscitate orders occurred in 40% of ICU patients and 25% of non-ICU patients (p < 0.001). In the ICU, when decision to withdraw life-sustaining treatment was made, time to death in children and newborns was 4:25 and 3:00, respectively. In institutions where it was available, involvement of specialized pediatric palliative care services was recorded in 15 ICU patients (43%) and in 18 non-ICU patients (78%) (p = 0.008).
CONCLUSIONS: This nation-wide study demonstrated that patients with a complex chronic condition who die in ICU, compared with those who die outside ICU, are characterized by fast changing care situations, including when to withdraw life-sustaining treatment. This highlights the importance of early effective communication and shared decision making among clinicians and families.