This dissertation provided population-based insights in the use and timing of palliative home care for end-stage COPD in Belgium and tested the applicability of a model of early-integrated palliative home care for end-stage COPD in the Flemish health care setting.
[Extrait résumé éditeur]
OBJECTIVES: To describe and compare euthanasia and physician-assisted suicide (EAS) practice in Flanders, Belgium (BE), the Netherlands (NL) and Switzerland (CH).
METHODS: Mortality follow-back surveys among attending physicians of a random sample of death certificates.
RESULTS: We studied 349 EAS deaths in BE (4.6% of all deaths), 851 in NL (4.6% of all deaths) and 65 in CH (1.4% of all deaths). People who died by EAS were mostly aged 65 or older (BE: 81%, NL: 77% and CH: 71%) and were mostly diagnosed with cancer (BE: 57% and NL: 66%). Home was the most common place of death in NL (79%), while in BE and CH, more variation was found regarding to place of death. The decision to perform EAS was more frequently discussed with a colleague physician in BE (93%) and NL (90%) than in CH (60%).
CONCLUSIONS: EAS practice characteristics vary considerably in the studied countries with legal EAS. In addition to the legal context, cultural factors as well as the manner in which legislation is implemented play a role in how EAS legislation translates into practice.
OBJECTIVES: While palliative care (PC) has been shown to improve symptoms and end-of-life (EOL) care for patients with cancer, data are lacking on the patterns of use and outcomes of PC consultations for hospitalized patients with liver disease. We sought to characterize the patterns of use and outcomes of PC consultations for hospitalized patients with liver disease compared to patients with cancer.
METHODS: We conducted an observational study using data from the Palliative Care Quality Network (PCQN). The PCQN contains prospectively collected data on 135,197 hospitalized patients receiving PC consultations at 88 PCQN sites between 1/2013-12/2017. The PCQN dataset includes patient demographics, processes of care, and patient-level clinical outcomes.
RESULTS: The cohort included 44,933 patients, of whom 4,402 (9.8%) had liver disease and 40,531 (90.2%) had cancer. Patients with liver disease were younger (58.9 years vs. 65.2 years, p<0.0001) and had higher in-hospital mortality (28% vs. 16.8%, p<0.0001). Patients with liver disease were more likely to receive PC consultations to address goals of care (81.7% vs. 67.9%, p<0.0001) as opposed to pain management (10.9% vs. 34.9%, p<0.0001). Both groups had similar rates of symptom improvement and change in resuscitation preferences after PC consultation.
CONCLUSION: Hospitalized patients with liver disease were more likely to have a PC referral to address goals of care compared to those with cancer and were more likely to die in the hospital. Despite late PC consultations, patients with liver disease experienced improvement in symptoms and clarification of their goals of care, similar to those with cancer.
Background: Palliative care has improved the quality of end-of-life (EOL) care and lowered the health care cost of cancer, and these benefits should be extended to patients with other serious illnesses including end-stage kidney disease. We evaluated the quality of EOL care, survival probabilities, and health care costs for dialysis patients in their last month of life.
Methods: We conducted a population-based study and analyzed data from Taiwan’s Longitudinal Health Insurance Database, which contains claims information of patient medical records, health care costs, and insurance system exit dates (our proxy for death between 2006 and 2011).
Results: Data of 1177 adult patients who died of chronic hemodialysis or peritoneal dialysis were investigated. The mean age of these patients was 69.7 ± 11.9 years, and 585 (49.7%) were women. Some patients with dialysis received cardiopulmonary resuscitation (66.9%), died in a hospital (65.0%), or were admitted to an intensive care unit (51.0%) in the last month of life. We further classified these patients into two groups, namely dialysis with cancer (DC) (n = 149) and dialysis without cancer (D) (n = 1028). Only 19 dialysis patients received palliative care, and the proportion of patients receiving palliative care was higher in the DC group than in the D group (11.4% vs. 0.2%). The mean health care costs per person during the final month of life was similar between the DC and D groups (USD 2755 ± 259 vs. USD 2827 ± 88). Multivariate logistic regression showed that the DC group had lower odds of receiving cardiopulmonary resuscitation (CPR) (OR: 0.39, CI = 0.26–0.56, p < 0.001) procedures, higher odds of longer hospital stays than the third quartile (> 25 days) (OR: 1.52, CI = 1.01–2.29, p = 0.0046), and higher odds of being hospitalized more than once (OR: 2.26, CI = 1.42–3.59, p = 0.001) than the D group in the last month of life after adjustments.
Conclusions: DC patients received hospice care more frequently, received CPR less frequently, and had similar health care costs. DC patients also had a higher risk of a hospital stay that lasted more than 25 days and more than one hospitalization compared with D patients in the final month of life.
Cultural competence, a clinical skill to recognise patients' cultural and religious beliefs, is an integral element in patient-centred medical practice. In the area of death and dying, physicians' understanding of patients' and families' values is essential for the delivery of culturally appropriate care. Dementia is a neurodegenerative condition marked by the decline of cognitive functions. When the condition progresses and deteriorates, patients with advanced dementia often have eating and swallowing problems and are at high risk of developing malnutrition. Enteral tube feeding is a conventional means of providing artificial nutrition and hydration to meet nutritional needs, but its benefits to the frail population are limitedly shown in the clinical evidence. Forgoing tube feeding is ethically challenging when patients are mentally incompetent and in the absence of an advance directive. Unlike some developed countries, like the United States of America, death and dying is a sensitive issue or even a taboo in some cultures in developing countries that forgoing enteral tube feeding is clinically and ethically challenging, such as China and Malaysia. This article in three parts 1) discusses the clinical and ethical issues related to forgoing tube feeding among patients with advanced dementia, 2) describes how Hong Kong Chinese, North American, and Malaysian Islamic cultures respond differently in the decision-making patterns of forgoing tube feeding for patients with advanced dementia, and 3) reiterates the clinical implications of cultural competence in end-of-life care.
Dans le deuil périnatal, l’absence de reconnaissance juridique et sociale de l’existence de l’enfant peuvent être des facteurs de risque pour le travail de deuil des parents. La comparaison entre les lois italiennes et françaises montre le rôle joué par les racines laïques et chrétiennes dans la législation. Malgré les différences, dans les deux pays la reconnaissance de l’existence de l’enfant est encore faible. On n’est pas encore en mesure de pourvoir aux besoins des parents, pour lesquels, même sans l’inscription à l’état civil, l’enfant a vraiment existé.
Policies and practices have been developed to operationalize assisted dying processes in Canada. This project utilized an environmental scan to determine the spectrum of assisted death reporting practices and medical certificate of death (MCD) completion procedures both nationally and internationally. Findings suggest medically assisted dying (MAiD) is represented on the MCD inconsistently nationally and internationally. Related factors include the specifics of local assisted death legislation and variations in death-reporting legislation, variation in terminology surrounding assisted death and designated oversight agency for assisted dying reporting.
CONTEXT: The Cancer Control Act was passed in Japan in 2007, and various additional programs on palliative care have been implemented to improve quality of life and relieve pain and suffering in patients with cancer. However, how clinical settings have changed remains unclear.
OBJECTIVES: The primary aim of the present study was to determine changes in nurses' palliative care knowledge, difficulties, and self-reported practices between 2008 and 2015.
METHODS: This study was an analysis of two nationwide observational studies from 2008 to 2015. We conducted two questionnaire surveys for representative samples of nurses in designated cancer hospitals, community hospitals, and district nurse services. The measurements used the Palliative Care Knowledge Test (PCKT, range 1-100), the Palliative Care Difficulties Scale (PCDS, range 1-5), and the Palliative Care Self-Reported Practice Scale (PCPS, range 1-5). Comparisons were made using the nonpaired Student t-test and a multivariate linear regression model using two cohorts.
RESULTS: We analyzed survey results for 2707 nurses in 2008 and 3649 nurses in 2015. Significant improvements were seen in PCKT, PCDS, and PCPS total scores for nurses in every work location over the seven-year study period, with PCKT total scores of 53 vs. 65 (P < 0.001; effect size = 0.60), 47 vs. 55 (P < 0.001; effect size = 0.40), and 52 vs. 55 (P = 0.118; effect size = 0.13), PCDS total scores of 3.0 vs. 2.5 (P < 0.001; effect size = 0.76), 3.4 vs. 2.8 (P < 0.001, effect size = 0.91), and 3.2 vs. 2.9 (P < 0.001; effect size = 0.53), and PCPS total scores of 3.7 vs. 4.0 (P < 0.001; effect size = 0.13), 3.5 vs. 3.8 (P < 0.001; effect size = 0.42), and 3.8 vs. 4.0 (P < 0.011; effect size = 0.21) in designated cancer hospitals, community hospitals, and district nurse services, respectively.
CONCLUSION: Nurses' palliative care knowledge, difficulties, and self-reported practices improved over the seven-year study period, especially in terms of expert support in designated cancer hospitals and knowledge among nurses in designated cancer hospitals.
The article looks into the case involving Fabiano Antoniani, who, following a major road accident, was left tetraplegic. Marco Cappato drove him to a Swiss clinic where Mr. Antoniani took his own life by self-administration of lethal pentobarbital sodium. Cappato was put on trial, but the Italian Constitutional Court urged the Parliament to decriminalise assisted suicide in extremely serious cases. From a comparison with other European countries, approaches range from restrictive (banning both active euthanasia and assisted suicide), to entirely permissive. An intermediate approach only entails a ban on active euthanasia. It would be desirable to uniformise the diverse national statutes on a European level, which would make it possible for everyone to receive assistance towards ending their suffering, with limitations to incurable cases to be medically verified, and at the end of a path designed to ensure that patient freedom of choice is upheld at all time.
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.