BACKGROUND: Little is known about the quality of end of life care in long-term care (LTC) for residents with different diagnostic trajectories. The aim of this study was to compare symptoms before death in LTC for those with cancer, dementia or chronic illness.
METHODS: After-death prospective staff survey of resident deaths with random cluster sampling in 61 representative LTC facilities across New Zealand (3709 beds). Deaths (n = 286) were studied over 3 months in each facility. Standardised questionnaires - Symptom Management (SM-EOLD) and Comfort Assessment in End of life with Dementia (CAD-EOLD) - were administered to staff after the resident’s death.
RESULTS: Primary diagnoses at the time of death were dementia (49%), chronic illness (30%), cancer (17%), and dementia and cancer (4%). Residents with cancer had more community hospice involvement (30%) than those with chronic illness (12%) or dementia (5%). There was no difference in mean SM-EOLD in the last month of life by diagnosis (cancer 26.9 (8.6), dementia 26.5(8.2), chronic illness 26.9(8.6). Planned contrast analyses of individual items found people with dementia had more pain and those with cancer had less anxiety. There was no difference in mean CAD-EOLD scores in the week before death by diagnosis (total sample 33.7(SD 5.2), dementia 34.4(SD 5.2), chronic illness 33.0(SD 5.1), cancer 33.3(5.1)). Planned contrast analyses showed significantly more physical symptoms for those with dementia and chronic illness in the last month of life than those with cancer.
CONCLUSIONS: Overall, symptoms in the last week and month of life did not vary by diagnosis. However, sub-group planned contrast analyses found those with dementia and chronic illness experienced more physical distress during the last weeks and months of life than those with cancer. These results highlight the complex nature of LTC end of life care that requires an integrated gerontology/palliative care approach.
Depuis le 31 janvier 2018, l’Italie fait partie des États qui disposent d’une loi permettant à tout individu majeur d’exprimer ses volontés en matière de traitement, en prévision des jours où il pourrait être hors d’état de le faire. Parallèlement, en France, deux ans après son entrée en vigueur, la loi Claeys-Leonetti est de plus en plus questionnée. Certains demandent une nouvelle loi sur la fin de vie. Un détour par l’Italie, centré sur le contexte d’émergence de sa récente loi, peut se révéler éclairant. Si les similitudes entre les deux textes sont nombreuses, les différences entre les pratiques et les cadres de pensée peuvent suggérer des pistes de réflexion afin de contribuer à améliorer les conditions de la fin de vie.
BACKGROUND: The Surprise Question (SQ) "would I be surprised if this patient were to die in the next 12 months?" has been suggested to help clinicians, and especially General Practitioners (GPs), identify people who might benefit from palliative care. The prognostic accuracy of this approach is unclear and little is known about how GPs use this tool in practice. Are GPs consistent, individually and as a group? Are there international differences in the use of the tool? Does including the alternative Surprise Question ("Would I be surprised if the patient were still alive after 12 months?") alter the response? What is the impact on the treatment plan in response to the SQ? This study aims to address these questions.
METHODS: An online study will be completed by 600 (100 per country) registered GPs. They will be asked to review 20 hypothetical patient vignettes. For each vignette they will be asked to provide a response to the following four questions: (1) the SQ [Yes/No]; (2) the alternative SQ [Yes/No]; (3) the percentage probability of dying [0% no chance - 100% certain death]; and (4) the proposed treatment plan [multiple choice]. A "surprise threshold" for each participant will be calculated by comparing the responses to the SQ with the probability estimates of death. We will use linear regression to explore any differences in thresholds between countries and other clinician-related factors, such as years of experience. We will describe the actions taken by the clinicians and explore the differences between groups. We will also investigate the relationship between the alternative SQ and the other responses. Participants will receive a certificate of completion and the option to receive feedback on their performance.
DISCUSSION: This study explores the extent to which the SQ is consistently used at an individual, group, and national level. The findings of this study will help to understand the clinical value of using the SQ in routine practice.
BACKGROUND: Diagnostic criteria for prolonged grief have appeared in the Diagnostic and Statistical Manual of Mental Disorders ( DSM-5; persistent complex bereavement disorder, PCBD) and in the ICD-11 (prolonged grief disorder, PGD), and the question of which diagnosis is most clinically useful has been hotly debated. This study provides the first longitudinal comparison of PCBD and PGD in their ability to capture symptom change over time and their relation to long-term outcomes.
METHODS: A community sample was recruited consisting of 282 individuals who had recently lost a spouse. Structured clinical interviews were conducted at 3, 14, and 25 months postloss for symptoms corresponding to PCBD and PGD criteria. Outcomes at 25 months included PCBD and PGD caseness, depression, global functioning, and interviewer ratings of participant suffering.
RESULTS: PCBD and PGD trajectories determined by growth mixture modeling, each captured three primary outcomes: resilience, moderate-improving symptoms, and prolonged-stable symptoms. The PGD solution also identified trajectories of increasing and decreasing distress: prolonged-worsening and acute-recovering symptoms. Prediction of 25-month outcomes indicated differences conforming to the severity of PGD symptoms, and the prolonged-worsening trajectory was associated with the worst adjustment.
CONCLUSIONS: PGD symptoms were more differentiated, better-captured psychopathology, and other outcomes and were more sensitive to change over time compared to PCBD.
Palliative care was first developed for patients with terminal cancer. According to the definition of World Health Organization (WHO), palliative care is “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness.” (WHO, 2019a). Based on WHO’s statistics, the number of deaths caused by chronic non-cancer conditions is far more higher than by terminal cancer (WHO, 2019b). Although the benefits of providing palliative care to non-cancer patients have been increasingly recognized, compared to cancer patients, the use of palliative services among patients with non-cancer diseases is extremely low and the timing of referrals is typically late (Gadoud et al., 2014 ; Zheng et al., 2013). A survey in Scotland showed that, at death, only 20% of non-cancer patients had been formally referred for palliative care compared with 75% of cancer patients (Zheng et al., 2013). Although Taiwan is the highest-ranked Asian country on the 2015 Quality of Death Index, the percentage of non-cancer patients receiving palliative care service in Taiwan falls below the 20% noted in the Scotland survey.
BACKGROUND: Young adults represent a minority in research; they are often considered too young or too old for participation. There is sparse information, especially in bereavement research, regarding how this age group perceives research participation and what they consider beneficial or harmful.
AIM: To explore how parentally bereaved and nonbereaved young adults perceive research participation.
DESIGN: Qualitative analysis of free-text comments collected in a Swedish nation-wide survey.
SETTING/PARTICIPANTS: Parentally cancer-bereaved and nonbereaved young adults between 18 and 25 years old living in Sweden.
RESULTS: Five categories were identified from the free-text comments, three among the cancer-bereaved: (1) therapeutic to remember the deceased, (2) valuable to help others and improve care, and (3) short-term distressful-long-term beneficial, and two among the nonbereaved: (1) increased reflection and awareness about life, and (2) an opportunity to help others.
CONCLUSIONS: It is important to invite young adults to participate in bereavement research. The results suggest that potential harm is minimal and that participating in bereavement research can have a beneficial effect on young adults.
BACKGROUND: Achieving a "good death" is a major goal of palliative care. Nurses play a key role in the end-of-life care of older patients. Understanding the perceptions of both older patients and nurses in this area could help improve care during this period.
OBJECTIVES: To examine and compare the preferences and perceptions of older patients and nurses with regard to what they feel constitutes a "good death."
RESEARCH DESIGN:: A cross-sectional study.
PARTICIPANTS AND RESEARCH CONTEXT: This study employed a self-report questionnaire that asked about various options for end-of-life care. It was distributed to older patients who attended the outpatient clinic of internal medicine and nurses who worked at two medical schools in Thailand from September 2017 to February 2018. Patients were asked to respond to the questions as if they were terminally ill, and nurses were asked to imagine how older patients would answer the questions.
ETHICAL CONSIDERATION: Approval from Institutional Review Board was obtained.
FINDINGS: A total of 608 patients and 665 nurses responded to the survey. Nurses agreed with concepts of palliative care, but they rated themselves as having poor knowledge. The patient respondents felt that it was most important that they receive the full truth about their illnesses (29.2%). The nurses thought the most important issue was relief of uncomfortable symptoms (25.2%). On seven out of the 13 questions, nurses overestimated the importance of the relevant issue to patients and underestimated the importance on one question (p < 0.05).
DISCUSSION: Both nurses and older patients signified concepts of palliative care, but nurses felt that they lacked adequate knowledge. Nurses estimated that patients would have positive attitudes toward autonomy and the closure of life affairs to a significantly greater degree than the patient respondents.
CONCLUSIONS: We recommend that palliative care education be improved and that steps be taken to allow for more effective nurse-patient communication with regard to the patients' end-of-life wishes.
Objectives: Palliative care addresses the suffering of patients and families affected by progressive illness through the management of medical symptoms, psychosocial issues, and spiritual concerns. Although there is an emerging interest in applying palliative care to Parkinson's disease (PD), potential palliative care needs have not been systematically investigated in PD patients. Our primary objective was to determine the prevalence of clinically significant symptomatic, psychosocial, and spiritual issues in PD and understand their impact on health-related quality of life (HRQOL). Secondary objectives included comparing the level of palliative care needs of PD patients to advanced cancer patients and assessing preferences for advance care planning.
Methods: Ninety PD patients and 47 patients with advanced cancer were surveyed regarding potential palliative care needs, including symptom burden, mood, anticipatory grief, and spiritual well-being. PD patients completed additional scales regarding HRQOL, motor symptoms, cognitive impairment, and preferences regarding advance care planning.
Results: Potential palliative care needs, including high symptom burden and grief, were common in PD patients and contributed to HRQOL even when controlling for depression and motor severity. In all domains investigated, PD patients had similar or higher levels of palliative care needs as patients with advanced cancer. PD patients expressed a desire to complete advance directives early in the disease course and with a physician.
Conclusions: Palliative care needs contribute to HRQOL in PD and are of similar severity as cancer patients. This study supports and helps focus efforts to integrate palliative care principles in PD care across the spectrum of the disease.
OBJECTIVES: The current evidence base regarding the effectiveness of home-based palliative care (HomePal) on outcomes of importance to multiple stakeholders remains limited. The purpose of this study was to compare end-of-life care in decedents who received HomePal with two cohorts that either received hospice only (HO) or did not receive HomePal or hospice (No HomePal-HO).
DESIGN: Retrospective cohorts from an ongoing study of care transition from hospital to home. Data were collected from 2011 to 2016.
SETTING: Kaiser Permanente Southern California.
PARTICIPANTS: Decedents 65 and older who received HomePal (n = 7177) after a hospitalization and two comparison cohorts (HO only = 25 102; No HomePal-HO = 22 472).
MEASUREMENTS: Utilization data were extracted from administrative, clinical, and claims databases, and death data were obtained from state and national indices. Days at home was calculated as days not spent in the hospital or in a skilled nursing facility (SNF).
RESULTS: Patients who received HomePal were enrolled for a median of 43 days and had comparable length of stay on hospice as patients who enrolled only in hospice (median days = 13 vs 12). Deaths at home were comparable between HomePal and HO (59% vs 60%) and were higher compared with No HomePal-HO (16%). For patients who survived at least 6 months after HomePal admission (n = 2289), the mean number of days at home in the last 6 months of life was 163 ± 30 vs 161 ± 30 (HO) vs 149 ± 40 (No HomePal-HO). Similar trends were also noted for the last 30 days of life, 25 ± 8 (HomePal, n = 5516), 24 ± 8 (HO), and 18 ± 11 (No HomePal-HO); HomePal patients had a significantly lower risk of hospitalizations (relative risk [RR] = .58-.87) and SNF stays (RR = .32-.77) compared with both HO and No HomePal-HO patients.
CONCLUSION: Earlier comprehensive palliative care in patients’ home in place of or preceding hospice is associated with fewer hospitalizations and SNF stays and more time at home in the final 6 months of life.
A decision by a society to sanction assisted dying in any form should logically go hand-in-hand with defining the acceptable method(s). Assisted dying is legal in several countries and we have reviewed the methods commonly used, contrasting these with an analysis of capital punishment in the USA. We expected that, since a common humane aim is to achieve unconsciousness at the point of death, which then occurs rapidly without pain or distress, there might be a single technique being used. However, the considerable heterogeneity in methods suggests that an optimum method of achieving unconsciousness remains undefined. In voluntary assisted dying (in some US states and European countries), the common method to induce unconsciousness appears to be self-administered barbiturate ingestion, with death resulting slowly from asphyxia due to cardiorespiratory depression. Physician-administered injections (a combination of general anaesthetic and neuromuscular blockade) are an option in Dutch guidelines. Hypoxic methods involving helium rebreathing have also been reported. The method of capital punishment (USA) resembles the Dutch injection technique, but specific drugs, doses and monitoring employed vary. However, for all these forms of assisted dying, there appears to be a relatively high incidence of vomiting (up to 10%), prolongation of death (up to 7 days), and re-awakening from coma (up to 4%), constituting failure of unconsciousness. This raises a concern that some deaths may be inhumane, and we have used lessons from the most recent studies of accidental awareness during anaesthesia to describe an optimal means that could better achieve unconsciousness. We found that the very act of defining an 'optimum' itself has important implications for ethics and the law.
BACKGROUND: Methadone may play a role in the control of refractory cancer pain in opioid switching, although some cases fail to switch to methadone.
OBJECTIVE: To evaluate the differences in the clinical aspects in switching to methadone between successful cases (SCs) and unsuccessful cases (UCs).
DESIGN: This was a retrospective study of the clinical aspects of cancer patients who experienced opioid switching from other opioids to methadone.
SETTING/SUBJECTS: Eighty-seven patients who were prescribed oral methadone in our hospital were analyzed. Methadone was initiated from other opioids due to refractory pain in the stop-and-go switching. Among the 87 cases, 7 cases were excluded from further analysis because methadone administration was stopped due to vomiting or self-cessation within six days from switching.
RESULTS: Among the 80 cases who had methadone for seven days or more, 70 cases (SCs) were successful in switching to methadone, according to the Japanese definition, although 10 cases (UCs) who experienced the rapid progression of illness failed due to oral difficulty in the course of titration. In comparison of the clinical characteristics between SCs and UCs, the number of days alive from the start of the administration of methadone was significantly greater in the SCs than in the UCs (SCs: 87.1, UCs: 19, p < 0.0001), but no significant differences were observed for any other factors.
CONCLUSION: From this comparative retrospective study of opioid switching to methadone for cancer pain control between SCs and UCs, early switching to methadone may be useful for patients with advanced cancer pain.
CONTEXT: At the end of life, chronic obstructive pulmonary disease (COPD) and lung cancer (LC) patients exhibit similar symptoms; however, a large-scale study comparing end-of-life health care utilization between these two groups has not been conducted in East Asia.
OBJECTIVES: To explore and compare end-of-life resource use during the last 6 months before death between COPD and LC patients.
METHODS: Using data from the Taiwan National Health Insurance Research Database, we conducted a nationwide retrospective cohort study in COPD (n = 8,640) and LC (n = 3,377) patients who died between 1997 and 2013.
RESULTS: The COPD decedents were more likely to be admitted to intensive care units (ICUs) (57.59% vs 29.82%), to have longer ICU stays (17.59 vs 9.93 days), and to undergo intensive procedures than the LC decedents during their last 6 months; they were less likely to receive inpatient (3.32% vs 18.24%) or home-based palliative care (0.84% vs 8.17%) and supportive procedures than the LC decedents during their last 6 months. The average total medical cost during the last 6 months was approximately 18.42% higher for the COPD decedents than for the LC decedents.
CONCLUSION: Higher intensive health care resource use, including intensive procedure use, at the end of life suggests a focus on prolonging life in COPD patients; it also indicates an unmet demand for palliative care in these patients. Avoiding potentially inappropriate care and improving end-of-life care quality by providing palliative care to COPD patients are necessary.
PURPOSE: Several studies have identified differences in end-of-life (EOL) care between urban and rural areas, yet little is known about potential differences in care processes or family evaluations of care. The purpose of this study was to examine the relationship between rurality of residence and quality of EOL care within the Veterans Affairs health care system.
METHODS: This study was a retrospective, cross-sectional analysis of 126,475 veterans who died from October 2009 through September 2016 in inpatient settings across 151 facilities. Using unadjusted and adjusted logistic regression, we compared quality of EOL care between urban and rural veterans using family evaluations of care and 4 quality of care indicators for receipt of (1) palliative care consult, (2) a chaplain visit, (3) death in an inpatient hospice unit, and (4) bereavement support.
FINDINGS: Veterans from rural areas had lower odds of dying in an inpatient hospice unit compared to veterans from urban areas, before and after adjustment (large rural OR 0.73, 95% CI: 0.70-0.77; P < .001, small rural OR 0.81, 95% CI: 0.77-0.86; P < .001, isolated rural OR 0.87, 95% CI: 0.81-0.93; P < .001). Differences in comparisons of other quality of care indicators were small and of mixed significance. No significant differences were found in family ratings of care in fully adjusted models.
CONCLUSION: Receipt of some EOL quality indicators differed with urban-rural residence for some comparisons. However, family ratings of care did not. Our findings call for further investigation into unmeasured individual characteristics and facility processes related to rurality.
BACKGROUND: There is a heterogeneous literature on healthcare utilization patterns at the end of life. The objective of this study is to examine the impact of closeness to death on the utilization of acute hospital-based healthcare services and some primary healthcare services and compare differences in gender, age groups and major causes of death disease specific mortality.
METHODS: A matched case-control study, nested in a cohort of 411,812 subjects, linked to administrative databases was conducted. All subjects were residents in the Friuli Venezia Giulia Region (Italy), born before 1946, alive in January 2000 and were followed up to December 2014. Overall, 158,571 decedents/cases were matched by gender and year of birth to one control, alive at least one year after their matched case's death (index-date). Hospital admissions, emergency department visits, drug prescriptions, specialist visits and laboratory tests that occurred 365 days before death/index-date, have been evaluated. Odds Ratios (ORs) for healthcare utilization were estimated through conditional regression models, further adjusted for Charlson Comorbidity Index and stratified by gender, age groups and major causes of death.
RESULTS: Decedents were significantly more likely of having at least one hospital admission (OR 7.0, 6.9-7.1), emergency department visit (OR 5.2, 5.1-5.3), drug prescription (OR 2.8, 2.7-2.9), specialist visit (OR 1.4, 1.4-1.4) and laboratory test (OR 2.7, 2.6-2.7) than their matched surviving counterparts. The ORs were generally lower in the oldest age group (95+) than in the youngest (55-74). Healthcare utilization did not vary by sex, but was higher in subjects who died of cancer.
CONCLUSION: Closeness to death appeared to be strongly associated with healthcare utilization in adult/elderly subjects. The risk seems to be greater among younger age groups than older ones, especially for acute based services. Reducing acute healthcare at the EOL represents an important issue to improve the quality of life in proximity to death.
BACKGROUND: There is increasing recognition that patients with non-malignant diseases have comparable physical and psychosocial symptom burden to patients with cancer. There is currently limited data directly comparing symptom burden between these patient groups.
OBJECTIVE: To investigate differences in symptom burden between patients with malignant and non-malignant conditions admitted to a palliative care unit (PCU).
METHOD: A cross-sectional study involving 186 patients admitted to a PCU was undertaken. Patients were dichotomised into malignant or non-malignant disease categories. Symptom burden at admission was assessed using the Symptom Assessment Scale and Palliative Care Problem Severity Score. Group differences in symptoms were analysed using univariate and multivariate approaches.
RESULTS: One hundred patients (53.8%) had cancer, with upper gastrointestinal the most common type (18.0%). Among the 86 patients with non-malignant disease, neurological conditions were most prevalent (40.7%). Patients admitted with non-malignant diseases were older, more functionally impaired and more likely to be deteriorating or terminal. A malignant diagnosis was associated with a higher likelihood of clinician-assessed pain, patient-assessed pain, fatigue, psychological/spiritual symptoms and other symptoms. However, when adjusted for confounders, disease category ceased to be a significant predictor of symptom burden. Younger patients experienced worse pain and patients in terminal phase experienced less symptom burden.
CONCLUSION: Symptom burden was similar between patients with malignant and non-malignant disease after adjustment for confounders. Further research is needed to understand the palliative care needs of patients with non-malignant disease.
En 2017, 606 000 personnes sont décédées en France. La moitié avait plus de 83 ans et un quart plus de 90 ans. L'âge moyen au décès ne cesse d'augmenter depuis cinquante ans. Il est passé de 72 ans pour les femmes décédées en 1967 à 83 ans pour celles décédées en 2017, et de 64 à 76 ans pour les hommes sur la même période. Depuis 1967, le nombre de décès de nouveau-nés a été divisé par six.
Origine : BDSP. Notice produite par IRDES DAER0xqs. Diffusion soumise à autorisation
Since the early 1990s, long-term care policies have undergone significant transformations across OECD countries. In some countries, these changes have responded to the introduction of major policy reforms while in others, significant transformations have come about through the accumulation of incremental policy changes. This book brings together evidence from over 12 years of care reforms to examine changes in long-term care systems occurring in OECD countries. It discusses and compares key changes in national policies and examines the main successes and failures of recent reforms. Finally, it suggests possible policy strategies for the future in the sector.
Origine : BDSP. Notice produite par IRDES qR0xBJl8. Diffusion soumise à autorisation
This book examines the complex operations of the long-term care facility and offers critical skills to current and future long-term care administrators for delivering quality, cost-effective services. Comprehensive, yet concise, the Third Edition explores the necessary skills and tools for creating a person-centered environment. Topics covered include : how to adapt an existing nursing facility, the growing culture change movement, and the laws, regulations, and financing of the long-term care industry, as well as its organization and delivery. Finally, this book offers extensive coverage of the essential skills necessary to manage it all.
Origine : BDSP. Notice produite par IRDES R0x8nEsH. Diffusion soumise à autorisation
Purpose: The aim of this study was to compare symptom expression in advanced cancer patients with depression and anxiety and in patients with no such symptoms.
Methods: Secondary analysis of a previous study assessing the role of an acute palliative supportive care unit (APSCU) in a comprehensive cancer center. Patients completed the Edmonton Symptom Assessment System (ESAS) at admission (T0) and 7 days after or at discharge (T7).
Results: Three hundred-fourteen consecutive cancer patients admitted to the APSCU were surveyed. Eighty-six and 66 patients improved their level of depression and anxiety, respectively (passing from = 4 to 0â€“3, from T0 to T7), after that palliative care intervention resulted in a significant improvement of the other symptoms. Changes were statistically significant for both symptoms (P < 0.0005). Patients admitted for uncontrolled pain were more likely to be anxious, while patients admitted for other symptoms or end-of-life care were more likely to be depressed. The presence of anxiety and depression (= 4/10 on ESAS) was significantly associated with a higher level of symptom expression at admission and at T7 (P < 0.0005). In patients presenting both psychological symptoms, symptom expression was significantly more relevant in comparison with patients not reporting moderate-severe psychological symptoms. Pain and depression were independently associated with anxiety at T0. Variables independently associated with depression at T0 were drowsiness, appetite, and anxiety.
Conclusions: Psychological symptoms of ESAS concur to hyper-express some symptoms and make symptom control more difficult. A clear association between anxiety and depression exists.
Communication is a key component of palliative and end-of-life care. Little is known about comfort with palliative and end-of-life communication among nurses working in rural and urban settings. We assessed this comparison using the 28-item (including 2 ranked items) Comfort with Communication in Palliative and End-of-Life Care instrument. Descriptive analyses of the sample (N = 252) identified statistically significant results differences for age and experience; rural nurses were older and more experienced. Urban nurses reported less comfort than did rural nurses based on composite score analysis (P = .03) and reported less comfort than did rural nurses in talking with patients and families about â€œend-of-life decisionsâ€ (P < .05). Overall, years of experience were significant for more comfort with end-of-life communication. Our instrument could be used within academic settings to establish baseline awareness of comfort with palliative and end-of-life communication and in institutional settings to provide a continuing education bridge from prelicensure through licensure. Moreover, experienced nurses are integral in mentoring new graduates in initiating and sustaining difficult conversations.