Context: Older and seriously ill Australians are often admitted to hospital in the last year of their life. The extent to which these individuals have considered important aspects of end-of-life (EOL) care, including location in which care is provided, goals of care, and involvement of others in decision making, is unclear.
Objectives: To determine, in a sample of older and seriously ill Australian inpatients, preferences regarding location in which they receive EOL care and reasons for their choice; who is involved in EOL decisions; disclosure of life expectancy; goals of care; and voluntary-assisted dying.
Methods: Cross-sectional face-to-face survey interviews conducted with 186 (80% consent) inpatients in a tertiary referral center aged 80 years and older; or aged 55 years and older with progressive chronic disease(s); or with physician-estimated life expectancy of less than 12 months.
Results: Home care was preferred (69%), given the perceived availability of family/friends, familiarity of environment, and likelihood of having wishes respected. If unable to make decisions themselves, inpatients wanted family to decide care alone (31%) or with a doctor (49%). Of those who had not discussed life expectancy, 23% wished to. Most (76%) preferred care that maintained quality of life and relieved symptoms. There was some agreement for being sedated at the EOL (63%) and able to access medication to end life (43%).
Conclusion: Most inpatients would prefer EOL care that maintains quality and relieves suffering compared with life extension and to receive this care at home. Family involvement in resolution and documentation of EOL decisions should be prioritized.
Background: Single-disease-focused treatment and hospital-centric care are poorly suited to meet complex needs in an era of multimorbidity. Understanding variation in palliative care's association with treatment choices is essential to optimizing interdisciplinary decision making in care of complex patients.
Aim: To estimate the association between palliative care and hospital costs by primary diagnosis and multimorbidity for adults with one of six life-limiting conditions: heart failure, chronic obstructive pulmonary disease (COPD), liver failure, kidney failure, neurodegenerative conditions including dementia, and HIV/AIDS.
Methods: Data from four studies (2002-2015) were pooled to provide an analytic dataset of 73,304 participants with mean costs $10,483, of whom 5,348 (7%) received palliative care. We estimated average effect of palliative care on direct hospital costs among the treated, using propensity scores to control for observed confounding.
Results: Palliative care was associated with a statistically significant reduction in total direct costs for heart failure (estimated treatment effect: -$2666; 95% confidence interval [CI]: -$3440 to -$1892), neurodegenerative conditions (-$3523; -$4394 to -$2651), COPD (-$1613; -$2217 to -$1009), kidney failure (-$3589; -$5132 to -$2045), and liver failure (-$7574; -$9232 to -$5916). The association for liver failure patients was statistically significantly larger than for any other disease group. Cost-saving associations were also statistically larger for patients with multimorbidity than single disease for two of the six groups: neurodegenerative and liver failure.
Conclusions: Heterogeneity in treatment effect estimates was observable in assessing association between palliative care and hospital costs for adults with serious life-limiting illnesses other than cancer. The results illustrate the importance of careful definition of palliative care populations in research and practice, and raise further questions about the role of interdisciplinary decision making in treatment of complex medical illness.
BACKGROUND: French demographic projection expects an increasing number of older, dependent patients in the next few years. A large proportion of this population lives in nursing homes and their transfer to hospitals at the end of life is an ongoing issue.
OBJECTIVE: This study explored the factors influencing the transfer of patients living in nursing homes to hospital at the end of life.
DESIGN: We used a mixed-methods questionnaire developed by an expert group and assessing different characteristics of the nursing homes.
PARTICIPANTS: All the nursing homes in the Rhône-Alpes area (n=680) were surveyed.
RESULTS: We obtained 466 (68%) answers. We found that a palliative care programme was present in 336 (72%) nursing homes. The majority had a coordinating physician 428 (82%) and a mean number of 6 nurses for 83 beds, with 83 (18%) having a night shift nurse. There was a mean number of 19 deaths per nursing home during the recorded year. The main cause of death was dementia (41%), cancer-related death (13%). Death occurred mostly in the nursing home (14 74%). Night shift nurse attendance was significantly associated with the place of death: 27 deaths occurred in nursing homes with a night shift nurse versus 12 in those without one (p<0001).
CONCLUSIONS: The location of the death of frail elderly patients is a major health issue that needs to be addressed. Our results suggests that the presence of a night shift nurse decreases the number of emergency transfers and deaths in the hospital.
BACKGROUND: Older adults prefer comfort over life-sustaining care. Decreased intensity of care is associated with improved quality of life at the end-of-life (EOL).
OBJECTIVES: This study explored the association between advance directives (ADs) and intensity of care in the acute care setting at the EOL for older adults.
METHODS: A retrospective, correlational study of older adult decedents (N = 496) was conducted at an academic medical center. Regression analyses explored the association between ADs and intensity of care.
RESULTS: Advance directives were not independently predictive of aggressive care but were independently associated with referrals to palliative care and hospice; however, effect sizes were small, and the timing of referrals was late.
CONCLUSION: The ineffectiveness of ADs to reduce aggressive care or promote timely referrals to palliative and hospice services, emphasizes persistent inadequacies related to EOL care. Research is needed to understand if this failure is provider-driven or a flaw in the documents themselves.
OBJECTIVES: To ascertain bereavement practices offered by hospitals and medical practitioners (MPs), factors that influence the likelihood of MPs' involvement in funeral attendance, the benefits and barriers to attendance to a patient's funeral as perceived by MPs and the rate of attendance to patients' funeral by MPs.
DESIGN: MEDLINE (Ovid), Embase, PubMed, and Google Scholar were searched with a systematic search structure for randomized controlled trials, comparative observational studies, case series, cross-sectional studies, editorials, and letters. The search was limited to English only. The study was registered with Prospero (Registration Number: CRD42018095368).
RESULTS: A total of 381 articles were identified with 46 articles meeting the inclusion criteria. Of the 46, 16 were editorials and 12 were letters. Eighteen were cross-sectional studies conducted in the United States, Canada, Australia, Israel, and Ireland. Year of publication ranged from 1990 to 2017. Of these, 12 were quantitative, 3 were qualitative, and 3 were mixed-method studies. Two of the cross-sectional studies involved family members of deceased patients while others involved MPs. Bereavement practices offered by hospitals included memorial services, letters, and services provided by bereavement coordinators. Bereavement practices employed by MPs included answering or making phone calls, attending family meetings, and sending condolence letters. MPs' attendance at a patient's funeral was influenced by MPs' gender, age years of experience the medical specialty. Perceived benefits of MPs' attendance at a patient's funeral included providing support to the family, extending the professional relationship, illustrating respect to the patient and the family, resolving guilt and personal growth. Barriers to the attendance included a lack of time, blurring of professional boundaries, personal discomfort with death, emotional arousal, and discouragement by colleagues. General practice had an attendance rate of 71%. Attendance rates for palliative care, oncology, and psychiatrists ranged from 63% to 81%, 7.1% to 67%, and 15% to 67%, respectively. Intensivists had an attendance rate of 22%.
CONCLUSION: Several bereavement practices are provided by hospitals and MPs. Funeral attendance is an uncommon bereavement practice. MPs' attitudes toward attending a patient's funeral are understudied in many specialties. Patient factors that influence MPs' participation in bereavement practices are poorly understood.
Palliative care (PC) is a national and global priority, yet there is insufficient knowledge regarding PC among generalist clinicians. An interdisciplinary educational initiative was implemented to enhance a hospital workforce's PC knowledge and skills. More than 1000 clinicians attended at least 1 of 27 educational offerings. Measurable gains were evident in key outcome measures including PC referrals and advanced directive documentation. Changes reflected a transformation of workforce culture and resulted in 2 national awards for improving PC.
Hospitals remain the most common location of death in a significant number of countries, and specialist palliative care is positioned as a crucial resource for improving hospital care for those nearing end of life. Little is known, however, about a substantive aspect of this work: how hospital palliative clinicians anticipate and organize a patient's dying trajectory. In this paper I draw from a larger original ethnographic research study of palliative specialists in two Canadian hospitals. Abductive analysis resulted in framing their work as affective labour, both reflecting and re-creating a larger affective economy shaping the affective states of everyone involved in the provision and uptake of care. I articulate six analytically ideal outcomes of clinicians' affective labour that organize end of life, including: 1) proactive co-authorship of disease trajectory; 2) mutual acknowledgement of a dying trajectory; 3) naturalizing direction and outcome of care, 4) ensuring a minimum of social disruption, 5) identification as compassionate and efficient care providers, and 6) increased specialist knowledge and interventions. In so doing, clinicians' practices become understandable as labour to meet a diversity of - at times conflicting - individual, organizational, and societal mandates that necessarily include, but extend well beyond, the patient and her immediate social network. This is the first study to consider hospital palliative care as an affective economy, and presents a theoretically innovative and empirically grounded model to advance new ways of conceptualizing hospital palliative care. I conclude by considering how this model, and the unique insights it affords, can inform the future development of end of life care in hospital settings.
BACKGROUND: Given survival measured in months, metrics, such as 30-day mortality, are poorly suited to measure the quality of palliative procedures for patients with advanced cancer. Nationally endorsed process measures associated with high-quality PC include code-status clarification, goals-of-care discussions, palliative-care referral, and hospice assessment. The impact of the performance of these process measures on subsequent healthcare utilization is unknown.
METHODS: Administrative data and manual review were used to identify hospital admissions with performance of palliative procedures for advanced pancreatic cancer at two tertiary care hospitals from 2011 to 2016. Natural language processing, a form of computer-assisted abstraction, identified process measures in associated free-text notes. Healthcare utilization was compared using a Cox proportional hazard model.
RESULTS: We identified 823 hospital admissions with performance of a palliative procedure. PC process measures were identified in 68% of admissions. Patients with documented process measures were older (66 vs. 63; p = 0.04) and had a longer length of stay (9 vs. 6 days; p < 0.001). In multivariate analysis, patients treated by surgeons were less likely to have PC process measures performed (odds ratio 0.19; 95% confidence interval 0.10–0.37). Performance of PC process measures was associated with decreased healthcare utilization in a Cox proportional hazard model.
CONCLUSIONS: PC process measures were not performed in almost one-third of hospital admissions for palliative procedures in patients with advanced pancreatic cancer. Performance of established high-quality process measures for seriously ill patients undergoing palliative procedures may help patients to avoid burdensome, high-intensity care at the end-of-life.
Background: Emergency department visits or readmission to hospital are common particularly among those with advanced illness. Little prospective data exist on early outcomes specifically for patients seen by a palliative care consult service during their acute care admission, who are subsequently discharged home.
Methods:This study followed 62 oncology patients who had had a palliative care consult during their admission to acute care with weekly phone calls postdischarge for 4 weeks. Events recorded included death, readmission, emergency department visits, and admission to a palliative care unit.
Results: By the end of the study, 32 (52%) of 62 had had at least 1 event, (readmission, emergency department visit, or death), with the majority of these occurring in the first 2 weeks postdischarge. The overall 4-week death rate was 14 (22.6%) of 62.
Conclusions: These data suggest that the need for a palliative care consult identifies inpatients at very high risk for early deterioration and underlines the critical importance of advance care planning/goals-of-care discussions by the oncology and palliative care teams to ensure patients and families understand their disease process and have the opportunity to direct their care decisions.
Nos bénévoles d’accompagnement ASP s’engagent dans des unités de soins palliatifs, mais bon nombre d’entre eux, en fait, accompagnent dans des services cliniques « lambda » ou à domicile. Il n’est pas anodin de pratiquer l’accompagnement en soins palliatifs dans un service non spécialisé. Un retour en arrière vers les origines de l’ASP fondatrice et des
autres ASP, accompagnant les malades au moment de l’émergence des soins palliatifs dans un contexte de prise en soins des malades en fin de vie (« tout ce qu’il reste à faire quand il n’y a plus rien à faire »), nous rappelle le poids de cette notion de fin de vie proche qui pèse encore sur la démarche palliative et son insertion dans les services cliniques.
Incontournables dans l’univers du jeu vidéo ou du cinéma, les masques de réalité virtuelle ont fait leur entrée à l’hôpital ces dernières années. Une équipe de soins lyonnaise propose un retour d’expérience sur l’intérêt de ces dispositifs en complément de la prise en soins des patients dans un service de soins à orientation palliative.
While end-of-life care (EoLC) priorities for patients dying in the hospital are well-documented, few data characterize needs and experiences of their family members. We conducted thematic analysis of audio recorded interviews of 18 bereaved family members to elucidate these experiences. Participants’ memories were organized into two parent themes: those related to satisfaction with the care received and effective communication; those identifying shortcomings in patient care, hospital-family communication, hospital environment, and care burden on the part of family members. These findings provide insight to enhance services to patients and their families at end-of-life and improve postmortem and bereavement services.
BACKGROUND: People living with life-threatening illness experience unmet existential needs despite the growing research and clinical field of palliative care. Narrative interventions show promise in managing these problems, but more knowledge is needed on the characteristics of narrative interventions and the feasibility of using personal narratives in a hospital.
AIM: To review the literature on personal narratives in hospital-based palliative care interventions and to strengthen palliative care practices.
DESIGN: We conducted a systematic integrative review with qualitative analysis and narrative synthesis in accordance with PRISMA where applicable (PROSPERO#:CRD42018089202).
DATA SOURCES: We conducted a systematic search in PubMed, Embase, Scopus, Cinahl, SocINDEX and PsychInfo for primary research articles published until June 2018. We assessed full-text articles against the eligibility criteria followed by a discussion of quality using the Critical Appraisal Skills Programme.
RESULTS: Of 480 articles, we found 24 eligible for this review: 8 qualitative, 14 quantitative and 2 mixed methods. The articles reported on dignity therapy, legacy building, outlook, short-term life review and life review. Data analysis resulted in five themes: core principles, theoretical framework, content of narrative, outcome and, finally, acceptability and feasibility.
CONCLUSION: Various types of systematic palliative care interventions use personal narratives. Common to these is a shared psychotherapeutic theoretical understanding and aim. Clinical application in a hospital setting is both feasible and acceptable but requires flexibility regarding the practices of the setting and the needs of the patient.
PURPOSE: Although patients with advanced cancer report poor sleep quality, few studies have assessed sleep quality with a combination of subjective and objective measures. We aimed to examine sleep quality in hospitalized patients with advanced cancer by combining patient-reported outcome-measures (PROMs) and polysomnography (PSG) or actigraphy.
METHODS: A one-night prospective observational study of sleep in hospitalized patients with metastatic cancer using WHO step III opioids was conducted. Total sleep time, sleep onset latency, number of awakenings, and wake after sleep onset were assessed by PROMs and actigraphy. Sleep quality was assessed by the Pittsburgh Sleep Quality Index (PSQI) (range; 0-21), where higher scores indicate worse sleep quality.
RESULTS: Forty patients were monitored. Median age was 70, median oral morphine equivalent dose was 80 mg/24 h (10–1725), median Karnofsky Performance Score was 50 (20–90), and median time to death from inclusion was 38 days (4–319). Mean PSQI score was 6.5 (SD ± 3.4). PROMs and actigraphy of mean (SD) sleep onset latency were 46 (± 64) and 35 min (± 61), respectively, while mean time awake at night was 37 (± 35) and 40 min (± 21). PROMs and actigraphy differed on number of awakenings (mean 2 (± 1) vs. 24 (± 15), p 0.001). Bland-Altman plots showed large individual differences between PROMs and actigraphy. PSG was not feasible.
CONCLUSIONS: PROMs and actigraphy documented poor sleep quality, but a lack of agreement across methods. The study demonstrates a need to improve assessment of sleep quality and treatment of sleep disturbance in hospitalized patients with advanced cancer near end of life.
BACKGROUND AND AIMS: The highest healthcare expenditures occur towards end of life. Costs relate to hospital admissions and investigations to diagnose, prognosticate and direct treatment. This Australian study compared cost of investigations in the last 72 h of life between an inpatient palliative care unit (PCU) and a tertiary hospital.
METHOD: We retrospectively reviewed fifty adult medical and surgical patients (admitted for >72 h and who died in hospital) from the PCU and referring tertiary centre, between March and July 2016. Patients in the emergency department, intensive care, medical assessment, paediatric and obstetric units were excluded. All patients had an acute resuscitation plan and were on the 'Care of the Dying' pathway.
RESULTS: Expenditure was less if palliative care were the primary caregivers, with statistically significant differences in amount of imaging (p < 0.001) and pathology (p < 0.001) ordered. There was no difference in microbiology (p = 0.172) and histology (p~1) ordered. Total cost of investigations for PCU patients was $1340.60 (4 of 50 patients), compared with $9467.78 (29 of 50 patients) in the tertiary hospital. PCU patients had longer length of stays (15.54 days vs 11.06 days) but cost less per bed day ($868.32 vs $878.79 respectively).
CONCLUSION: Inpatient PCUs are less likely to order investigations and are more cost-effective. A prospective study comparing an inpatient PCU, and patients at a tertiary centre, with and without consult liaison palliative care input, would be worthwhile to see if outcomes remain the same and if consult liaison palliative care affects the investigative burden.
BACKGROUND: Overuse of antibiotics in end-of-life patients with advanced directives increases bacterial resistance and causes morbidity and mortality. Consultations with infectious disease (ID) physicians and burnout, which can affect antibiotic days of therapy (DOT) prescribed by physicians, have not been examined so far.
OBJECTIVES: To assess antibiotic use by physicians in end-of-life (EOL) patients with advanced directives and to investigate the association between ID consultations, physician burnout, and antibiotic DOT in those patients.
DESIGN: A descriptive correlational study.
SETTING: Acute-care and post-acute-care hospitals.
PARTICIPANTS: The study included 213 physicians and 932 their hospitalized patients in the last 2 weeks of life.
METHODS: We distributed questionnaires and analyzed the data collected regarding ID consultation, EOL antibiotics prescription with and without an advanced directive, and physician burnout to 278 physicians, and 213 were completed (response rate 76%).
RESULTS: Of the 932 deaths, 435 of 664 (>50%) were EOL patients with advanced directives. Of these patients, 74% received antibiotics, 29.9% had bacterial resistance cultures, and antibiotics were discontinued in only 5%. Half of the physicians lacked knowledge concerning antibiotics use issues and had significantly fewer consultations with ID physicians in EOL patients with advanced directives (mean rate, 0.27) than those without advanced directives (mean rate, 0.47). ID physicians reported significantly higher emotional exhaustion levels (mean rate, 29) than other medical specialties (mean rate, 19.2). Antibiotic DOT was significantly higher when patients had ID consultations (mean rate, 21.6) than in patients who did not (mean rate, 16.2). In post-acute-care hospitals and/or geriatric wards, antibiotic DOT was significantly higher than in other types of hospitals and/or wards. Depersonalization level was negatively related to antibiotic DOT (P < .05).
CONCLUSIONS: Antibiotics are overused in EOL patients with advanced directives. ID physician burnout and impact of ID consultation should be further assessed.
Cet article décrit certains aspects uniques dans les soins des patients de sexe masculin souffrant d'une maladie hématologique, tout au long du processus, depuis l'étape du diagnostic en passant par la phase de traitement jusqu'à la rémission et parfois, malheureusement, jusqu'à la phase de fin de vie. Ce périple peut s'étendre de quelques mois à plusieurs années. Cet article présente aussi le travail effectué auprès de patients de sexe masculin qui suivent une thérapie de groupe au sein du service. Il met en lumière les défis auxquels les hommes sont confrontés, en particulier dans la société israélienne, lorsqu'ils doivent faire face à une maladie potentiellement mortelle.
[Adaptation de l'Intro.]
OBJECTIVES: This study aimed to evaluate the incidence and causes of hospitalization in the year preceding death of patients with heart failure (HF).
BACKGROUND: Hospitalizations in HF are common, especially in the last period of the lives of patients with HF, but little is known about hospitalization burden and causes during this phase of the disease.
METHODS: From Danish nationwide registries, we identified patients who died in the period 2001-2016 after having experienced HF for at least 1 year, and examined hospitalizations during the last year of life in age- and sex-stratified analyses.
RESULTS: We included 32,157 patients. Median age at time of death was 81 years; 39% were women. A total of 26,561 (84%) patients were hospitalized at least once during the last year of life. The patients experienced a median of 2 (1 to 3) hospitalizations and spent 14 (3 to 31) days in the hospital. Of all hospitalizations (n = 80,362), 9,644 (12%) were due to HF, 14,738 (18%) due to other cardiovascular (CV) causes, and 51,696 (64%) due to non-CV causes (p < 0.001). The frequency of hospitalizations increased toward death, but the domination of non-CV causes remained consistent throughout the year, regardless of age and sex. If we included diagnoses covering renal insufficiency in the definition of HF hospitalizations, non-CV hospitalizations remained dominant (58%).
CONCLUSIONS: During the last year alive, patients with HF were more often hospitalized due to non-CV causes rather than HF. These findings warrant more focus on a multidisciplinary approach toward end-of-life care in patients with HF.
INTRODUCTION: Metastatic lung cancer is an incurable disease which results in a high burden of symptoms, a poor quality of life and an expected prognosis of less than 1 year after diagnosis. Treatment shortly before death may result in potential burdensome and inappropriate hospital admissions and hospital deaths. Dying at home is, at a population level, considered a quality for good end-of-life care.
AIM: We examined what percentage of patients with metastatic lung cancer died inside the hospital and if hospital death, or other characteristics of the patient, oncologist or healthcare, were associated with treatment in the last month of life.
METHODS: This retrospective cohort study evaluated the medical records of 1322 patients with metastatic lung cancer who received care at one of 10 hospitals across the Netherlands and died between 1-6-2013 and 31-7-2015. Demographic and clinical characteristics were obtained from the medical records.
RESULTS: In total, 18% of the patients died during a hospital admission. This percentage was higher for patients who received chemotherapy (42%) or targeted therapy with tyrosine kinase inhibitors (25%) in the last month of life. Patients younger than 60 years of age, patients who received chemotherapy in the last month of life and patients in whom TKIs were started in the last month of life were more likely to die inside the hospital.
DISCUSSION: In the Netherlands, fewer than one in five patients with metastatic lung cancer died in the hospital and in-hospital death was associated with the relatively late use of chemotherapy or targeted therapy. Careful selection of patients for disease-modifying therapy might enhance the opportunity for patients to die at their preferred place.
Background: Development of electronic health record (EHR) prediction models to improve palliative care delivery is on the rise, yet the clinical impact of such models has not been evaluated.
Objective: To assess the clinical impact of triggering palliative care using an EHR prediction model.
Design: Pilot prospective before-after study on the general medical wards at an urban academic medical center.
Participants: Adults with a predicted probability of 6-month mortality of = 0.3.
Intervention: Triggered (with opt-out) palliative care consult on hospital day 2.
Main Measures: Frequencies of consults, advance care planning (ACP) documentation, home palliative care and hospice referrals, code status changes, and pre-consult length of stay (LOS).
Key Results: The control and intervention periods included 8 weeks each and 138 admissions and 134 admissions, respectively. Characteristics between the groups were similar, with a mean (standard deviation) risk of 6-month mortality of 0.5 (0.2). Seventy-seven (57%) triggered consults were accepted by the primary team and 8 consults were requested per usual care during the intervention period. Compared to historical controls, consultation increased by 74% (22 [16%] vs 85 [63%], P < .001), median (interquartile range) pre-consult LOS decreased by 1.4 days (2.6 [1.1, 6.2] vs 1.2 [0.8, 2.7], P = .02), ACP documentation increased by 38% (23 [17%] vs 37 [28%], P = .03), and home palliative care referrals increased by 61% (9 [7%] vs 23 [17%], P = .01). There were no differences between the control and intervention groups in hospice referrals (14  vs 22 , P = .13), code status changes (42  vs 39 ; P = .81), or consult requests for lower risk (< 0.3) patients (48/1004  vs 33/798 ; P = .48).
Conclusions: Targeting hospital-based palliative care using an EHR mortality prediction model is a clinically promising approach to improve the quality of care among seriously ill medical patients. More evidence is needed to determine the generalizability of this approach and its impact on patient- and caregiver-reported outcomes.