CONTEXT: The aging of the world's population increasingly calls on older people to care for their cancer relatives. This scenario confronts clinicians involved with end-of-life care with an imposing challenge: elderly family caregivers could have a different perception of the burdens associated with assistance compared to their younger counterparts. Palliativists need to know what limits and resources of these new age categories of caregivers could be for a global management of dying patients with cancer and their family.
OBJECTIVES: To evaluate the caregiver burden in family caregivers supporting dying patients with cancer in order to compare the differences between 2 different caregivers age groups (younger vs elderly population).
METHODS: This is a cross-sectional study. A total of 174 family caregivers of hospice patients were interviewed through the Caregiver Burden Inventory (CBI). The sample group was divided into 2 subgroups aged <65 (younger group) and =65 years old (elderly group).
RESULTS: Compared with younger caregivers, the elderly group reported significantly higher scores in the CBI-developmental subscale (P = .009) confirmed by the generalized linear model (multivariate) evaluation that included possible predictors in the model. No further differences were found between the 2 age groups in the other CBI scores (time-dependent, physical, social, emotional, and overall score).
CONCLUSION: Elderly caregivers are at high risk for experiencing developmental burden. This finding could prompt mental health professionals to pay greater attention to the value that assistance to the family member can have on their personal story and on that of the family or couple.
OBJECTIVES: Palliative sedation is a highly debated medical practice, particularly regarding its proper use in end-of-life care. Worldwide, guidelines are used to standardise care and regulate this practice. In this review, we identify and compare national/regional clinical practice guidelines on palliative sedation against the European Association for Palliative Care (EAPC) palliative sedation Framework and assess the developmental quality of these guidelines using the Appraisal Guideline Research and Evaluation (AGREE II) instrument.
METHODS: Using the PRISMA criteria, we searched multiple databases (PubMed, CancerLit, CINAHL, Cochrane Library, NHS Evidence and Google Scholar) for relevant guidelines, and selected those written in English, Dutch and Italian; published between January 2000 and March 2016.
RESULTS: Of 264 hits, 13 guidelines-Belgium, Canada (3), Ireland, Italy, Japan, the Netherlands, Norway, Spain, Europe, and USA (2) were selected. 8 contained at least 9/10 recommendations published in the EAPC Framework; 9 recommended 'pre-emptive discussion of the potential role of sedation in end-of-life care'; 9 recommended 'nutrition/hydration while performing sedation' and 8 acknowledged the need to 'care for the medical team'. There were striking differences in terminologies used and in life expectancy preceding the practice. Selected guidelines were conceptually similar, comparing closely to the EAPC Framework recommendations, albeit with notable variations.
CONCLUSIONS: Based on AGREE II, 3 guidelines achieved top scores and could therefore be recommended for use in this context. Also, domains 'scope and purpose' and 'editorial independence' ranked highest and lowest, respectively-underscoring the importance of good reportage at the developmental stage.
Objective: The aim of this study was to describe end-of-life (EOL) milieu among caregivers of children who died in the hospital and to compare their psychosocial, spiritual, and financial concerns with caregivers of children who survived.
Materials and Methods: Sixty caregivers of children (30 survivors and 30 nonsurvivors), admitted in the pediatric intensive care unit and general pediatric unit, were recruited over a period of 1 year. Mixed qualitative methods were used to collect information from parents on EOL care perspectives.
Results: Demographic, disease, and treatment-related characteristics were not significantly different between nonsurvivor and survivor groups. The caregivers of nonsurvivors versus survivors showed no significant differences as regards optimal care (76.67% vs. 56.67%), social support (76.6% vs. 66.67%), and frequent recitation of scriptures (30.77% vs. 45.83%). Mean medical expenditure among children receiving EOL care was Rs. 40,883 (range: Rs. 800-5 lakhs). Regression results revealed that for every 1 day of increase in hospital stay, cost of hospitalization for dying children increased by Rs. 3000 (P = 0.0001). Medical insurance was reported by only minority of the cases (5%). Several themes emerged in the focus group discussions with care providers which highlighted the importance of communication and need for emotional, social, and financial support. EOL decision was taken in only two of the nonsurviving children.
Conclusions: The study offers useful insight about social, financial, and religious "end-of-life" needs among terminally sick children and thereby sensitizes the health-care providers to optimize their care at this niche period.
Background: Natural language processing (NLP), a form of computer-assisted data abstraction, rapidly identifies serious illness communication domains such as code-status confirmation and goals of care (GOC) discussions within free-text notes, using a codebook of phrases. Differences in the phrases associated with palliative care for patients with different types of illness are unknown.
Objective: To compare communication of code-status clarification and GOC discussions between patients with advanced pancreatic cancer undergoing palliative procedures and patients admitted with life-threatening trauma.
Design: Retrospective cohort study.
Setting/Subjects: Patients with in-hospital admissions within two academic medical centers.
Measurements: Sensitivity and specificity of NLP-identified communication domains compared with manual review.
Results: Among patients with advanced pancreatic cancer (n = 523), NLP identified code-status clarification in 54% of admissions and GOC discussions in 49% of admissions. The sensitivity and specificity for code-status clarification were 94% and 99% respectively, while the sensitivity and specificity for a GOC discussion were 93% and 100%, respectively. Using the same codebook in patients with life-threatening trauma (n = 2093), NLP identified code-status clarification in 25.9% of admissions and GOC discussions in 6.3% of admissions. While NLP identification had 100% specificity, the sensitivity for code-status clarification and GOC discussion was reduced to 86% and 50%, respectively. Adding dynamic phrases such as “ongoing discussions” and phrases related to “family meetings” increased the sensitivity of the NLP codebook for code status to 98% and for GOC discussions to 100%.
Conclusions: Communication of code status and GOC differ between patients with advanced cancer and those with life-threatening trauma. Recognition of these differences can aid in identification in patterns of palliative care delivery.
Knowledge about what psychological characteristics underlie complicated grief (CG) is limited. The current study examined the five-factor personality traits in 81 bereaved adults with (n = 51) and without (n = 30) CG. A trained doctoral-level clinician evaluated participants using a structured, diagnostic psychiatric interview, and they completed self-report measures of grief and personality. A multiple regression model indicated that higher levels of neuroticism were associated with greater CG symptom severity, implicating neuroticism in the development of CG. Future prospective studies confirming it as a risk factor for the development of CG are warranted.
Advance care planning (ACP) improves end-of-life care for patients and their caregivers. However, only one-third of adults have participated in ACP and rates are substantially lower among African Americans than among whites. Importantly, ACP improves many domains of care where there are racial disparities in outcomes, including receipt of goal-concordant care, hospice use, and provider communication. Yet, few studies have examined the effectiveness of ACP interventions among African Americans. The objectives of reducing disparities in the quality of palliative care for older African Americans through improved advance care planning (EQUAL ACP) are as follows: to compare the effectiveness of two interventions in (1) increasing ACP among African Americans and whites and (2) reducing racial disparities in both ACP and end-of-life care; and to examine whether racial concordance of the interventionist and patient is associated with ACP. EQUAL ACP is a longitudinal, multisite, cluster randomized trial and a qualitative study describing the ACP experience of participants. The study will include 800 adults =65 years of age (half African American and half white) from 10 primary care clinics in the South. Eligible patients have a serious illness (advanced cancer, heart failure, lung disease, etc.), disability in activities of daily living, or recent hospitalization. Patients are followed for one year and participate in either a patient-guided, self-management ACP approach, including a Five Wishes form or structured ACP with Respecting Choices First Steps. The primary outcome is formal or informal ACP—completion of advance directives, documented discussions with clinicians, and other written or verbal communication with surrogate decision makers about care preferences. Secondary outcomes assessed through after-death interviews with surrogates of patients who die during the study include receipt of goal-concordant care, health services use in the last year of life, and satisfaction with care. EQUAL ACP is the first large study to assess which strategies are most effective at both increasing rates of ACP and promoting equitable palliative care outcomes for seriously ill African Americans.
Antipsychotics are frequently used for treatment of delirium, although little evidence exists that they improve delirium outcomes. Our objective was to evaluate haloperidol (HAL) compared to non-haloperidol antipsychotics (NHAP) or no pharmacologic treatment (NP) in the management of delirium in older adults under the care of a palliative care consult service across a large, integrated health care system.
A retrospective chart review examined data from September 2014-September 2015. All hospitalized patients =65 years old with a diagnosis of delirium during palliative care consultation were included (n = 304). Primary outcome was length of stay after delirium diagnosis. Secondary outcomes included delirium symptom length, sedation, and QTc prolongation. Univariate statistical tests, analysis of covariance, and multiple regression methods were used to compare groups.
Post-delirium length of stay in the HAL, NHAP, and NP groups were 8.5, 7.0, and 6.8 days, respectively (p = 0.19). Delirium duration in the HAL, NHAP, and NP groups were 6.7, 6.0, and 4.9 days, respectively (p = 0.05). Safety outcomes were statistically different than the reference group (NHAP).
Congruent with existing literature in other generalized patient populations, no significant difference in post-delirium length of stay existed in geriatric, palliative care population.
BACKGROUND: By 2030, 30% of the European population will be aged 60 or over and those aged 80 and above will be the fastest growing cohort. An increasing number of people will die at an advanced age with multiple chronic diseases. In Europe at present, between 12 and 38% of the oldest people die in a long-term care facility. The lack of nationally representative empirical data, either demographic or clinical, about people who die in long-term care facilities makes appropriate policy responses more difficult. Additionally, there is a lack of comparable cross-country data; the opportunity to compare and contrast data internationally would allow for a better understanding of both common issues and country-specific challenges and could help generate hypotheses about different options regarding policy, health care organization and provision. The objectives of this study are to describe the demographic, facility stay and clinical characteristics of residents dying in long-term care facilities and the differences between countries.
METHODS: Epidemiological study (2015) in a proportionally stratified random sample of 322 facilities in Belgium, Finland, Italy, the Netherlands, Poland and England. The final sample included 1384 deceased residents. The sampled facilities received a letter introducing the project and asking for voluntary participation. Facility manager, nursing staff member and treating physician completed structured questionnaires for all deaths in the preceding 3 months.
RESULTS: Of 1384 residents the average age at death ranged from 81 (Poland) to 87 (Belgium, England) (p < 0.001) and length of stay from 6 months (Poland, Italy) to 2 years (Belgium) (p < 0.05); 47% (the Netherlands) to 74% (Italy) had more than two morbidities and 60% (England) to 83% (Finland) dementia, with a significant difference between countries (p < 0.001). Italy and Poland had the highest percentages with poor functional and cognitive status 1 month before death (BANS-S score of 21.8 and 21.9 respectively). Clinical complications occurred often during the final month (51.9% England, 66.4% Finland and Poland).
CONCLUSIONS: The population dying in long-term care facilities is complex, displaying multiple diseases with cognitive and functional impairment and high levels of dementia. We recommend future policy should include integration of high-quality palliative and dementia care.
This chapter looks at stillbirth registration and levels of stillbirth mortality in 19th century Iceland from a Nordic comparative perspective....
In the first part I compare regulations on stillbirth registation and collection on statistics in Iceland with Danemark. The second part discusses the development of stillbirth mortality in both countries. This section also includes a comparison with Sweden.
The purpose of the study was to investigate the relationship between death anxiety and depressive and anxiety symptoms among Norwegian and Turkish female psychology students. For this purpose, 304 participants were recruited, of whom 127 were Norwegian and 177 were Turkish. Participants’ ages ranged from 18 to 35 years. The Beck Depression Inventory, the trait anxiety subscale of the State-Trait Anxiety Inventory, and the Death Anxiety Scale were used to examine these relationships. The findings showed that death anxiety was significantly related to depressive and anxiety symptoms in both countries. Furthermore, Turkish participants scored higher on both death anxiety and depressive and anxiety symptoms than their Norwegian counterparts. The findings encourage researchers to focus more on the relationship between death anxiety and depressive and anxiety symptoms in a cross-cultural frame.
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.
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.
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.
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.