BACKGROUND: Early integration of palliative care (PC) for patients with advanced cancer has been recommended to improve quality of care. This study aims to describe prevalence, temporal trend and predictors of PC use in metastatic breast cancer (mBCa) patients receiving critical care therapies (CCT; included invasive mechanic ventilation, percutaneous endoscopic gastrostomy tube, total parenteral nutrition, tracheostomy and dialysis).
METHODS: The National Inpatient Sample was queried for mBCa patients receiving CCT between 2005 and 2014. Annual percent changes (APC) were calculated for PC prevalence in the overall cohort and subgroups. Multivariable logistic analysis was used to explore predictors of PC use.
RESULTS: Of 5833 mBCa patients receiving CCT, 880 (15.09%) received PC. Rate of PC use increased significantly from 2.53% in 2005 to 25.96% in 2014 (APC: 35.75%; p < 0.0001). Higher increase in PC use was observed in South (from 0.65% to 27.11%; APC: 59.42%; p < 0.0001), medium bedsize hospitals (from 3.75% to 26.05%; APC: 38.16%; p = 0.0006) and urban teaching hospitals (from 4.13% to 29.86%; APC: 37.33%; p = 0.0005). Multivariable analysis revealed that year interval, urban teaching hospitals, and invasive mechanical ventilation were associated with increased PC use, while primary diagnosis of gastrointestinal disorders, fractures, metastatic sites from lymph nodes and tracheostomy were associated with lower PC use.
CONCLUSIONS: PC use in mBCa patients receiving CCT increases significantly over the period. However, it still remains low. Efforts to illustrate disparities in PC use are needed to improve quality of care for mBCa patients receiving CCT, especially for those hospitalized in rural and nonteaching hospitals.
PURPOSE: The main aim of this study was to determine the prevalence of ethical dilemmas in the end-of-life process in advanced cancer patients.
METHODS: We carried out a multicenter, cross-sectional, observational, prospective study in a cohort of cancer patients whose life expectancy was = 6 months. We recorded sociodemographic characteristics, diagnosis of cancer, symptom burden, cognitive and functional status, emotional impact, and sociofamilial risk factors. The main outcome measure was the detection of ethical dilemmas, based on the following definition: conflict in decision-making during the end-of-life process that involves the need to choose between morally acceptable opposing options, where none is clearly preferable to another.
RESULTS: We included 324 patients (mean age, 69 years; 58% men). We identified 117 dilemmas in 90 patients (27.8%). The dilemmas detected were as follows: (a) conflicts of information (adaptive denial, conspiracy of silence, information exceeding patient's desired limit), 15.7%; (b) discrepancies in proportionality (discussion on futility, rejection of treatment, withdrawal of life support measures), 16.7%; (c) unrealistic expectations about the outcome of clinical trials, 2.5%; and (d) request for euthanasia or medically assisted suicide, 1.2%. We observed a greater prevalence of ethical dilemmas in men, in patients receiving active cancer treatment, and in patients with emotional distress (p < 0.05).
CONCLUSIONS: The prevalence of ethical dilemmas during the end-of-life process in cancer patients is relevant. Most dilemmas were associated directly or indirectly with respect for patient autonomy. In this context, the communication skills of the health professionals and advanced care planning take on a key role.
Background: Physicians experience high rates of burnout, which may negatively impact patient care. Palliative care is an emotionally demanding specialty with high burnout rates reported in previous studies from other countries. We aimed to estimate the prevalence of burnout and degree of resilience among Canadian palliative care physicians and examine their associations with demographic and workplace factors in a national survey.
Methods: Physician members of the Canadian Society of Palliative Care Physicians and Société Québécoise des Médecins de Soins Palliatifs were invited to participate in an electronic survey about their demographic and practice arrangements and complete the Maslach Burnout Inventory for Medical Professionals (MBI-HSS (MP)), and Connor-Davidson Resilience Scale (CD-RISC). The association of categorical demographic and practice variables was examined in relation to burnout status, as defined by MBI-HSS (MP) score. In addition to bivariable analyses, a multivariable logistic regression analysis, reporting odds ratios (OR), was conducted. Mean CD-RISC score differences were examined in multivariable linear regression analysis.
Results: One hundred sixty five members (29%) completed the survey. On the MBI-HSS (MP), 36.4% of respondents reported high emotional exhaustion (EE), 15.1% reported high depersonalization (DP), and 7.9% reported low personal accomplishment (PA). Overall, 38.2% of respondents reported a high degree of burnout, based on having high EE or high DP. Median CD-RISC resilience score was 74, which falls in the 25th percentile of normative population. Age over 60 (OR = 0.05; CI, 0.01–0.38), compared to age = 40, was independently associated with lower burnout. Mean CD-RISC resilience scores were lower in association with the presence of high burnout than when burnout was low (67.5 ± 11.8 vs 77.4 ± 11.2, respectively, p < 0.0001). Increased mean CD-RISC score differences (higher resilience) of 7.77 (95% CI, 1.97–13.57), 5.54 (CI, 0.81–10.28), and 8.26 (CI, 1.96–14.57) occurred in association with age > 60 as compared to =40, a predominantly palliative care focussed practice, and > 60 h worked per week as compared to =40 h worked, respectively.
Conclusions: One in three Canadian palliative care physicians demonstrate a high degree of burnout. Burnout prevention may benefit from increasing resilience skills on an individual level while also implementing systematic workplace interventions across organizational levels.
OBJECTIVE: No prior studies have used a single sample of bereaved families of cancer patients to compare multiple scales for assessing Complicated Grief. Here, we compare the two measures.
METHODS: We sent a questionnaire to the bereaved families of cancer patients who had died at 71 palliative care units nationwide.
RESULTS: The analysis included 3173 returned questionnaires. Prevalence of Complicated Grief was 7.8% by Brief Grief Questionnaire (with a cutoff score of 8) and 15.5% for Inventory of Complicated Grief (with a cutoff score of 26). The Spearman's correlation coefficient between the Brief Grief Questionnaire and the Inventory of Complicated Grief was 0.79, and a ceiling effect was seen for the distribution of the Brief Grief Questionnaire scores. Although 6.4% of respondents scored both 8 or higher on the Brief Grief Questionnaire and 26 or higher on the Inventory of Complicated Grief, only 1.4% scored both 8 or higher on the Brief Grief Questionnaire and <26 on the Inventory of Complicated Grief. In contrast, 9.1% scored <8 on the Brief Grief Questionnaire but 26 or higher on the Inventory of Complicated Grief.
CONCLUSION: The prevalence of Complicated Grief was estimated to be higher by the Inventory of Complicated Grief than by the Brief Grief Questionnaire in this sample. Patients with severe Complicated Grief might be difficult to discriminate their intensity of grief by the Brief Grief Questionnaire. Once the diagnostic criteria of Complicated Grief are established, further research, such as optimization of cutoff points and calculations of sensitivity and specificity, will be necessary.
OBJECTIVE: This study aimed to investigate the association between professional characteristics and the prevalence of advance directives among palliative care professionals.
METHODS: This is a descriptive cross-sectional study. A diverse sample of 327 healthcare professionals completed an online survey investigating demographic variables, length of time working in palliative care, post-graduate qualifications in palliative care, and development of their own advance directives.
RESULTS: The prevalence of advance directives among professionals working in palliative care was associated with factors such as higher academic qualifications, holding a post-graduate qualification in palliative care, and working in palliative care for a longer time. Furthermore, psychologists were most likely to have registered their own advance directives, compared with other healthcare professionals.
SIGNIFICANCE OF RESULTS: Post-graduate palliative care education and professional experience in this area appear to be important factors associated with palliative care professionals writing of their own advance directives. However, our study suggests that just being involved in or familiar with the context of palliative and end-of-life care does not guarantee that health professionals register their advance directives.
Importance: End-of-life care is costly, and decedents often experience overtreatment or low-quality care. Noninvasive ventilation (NIV) may be a palliative approach to avoid invasive mechanical ventilation (IMV) among select patients who are hospitalized at the end of life.
Objective: To examine the trends in NIV and IMV use among decedents with a hospitalization in the last 30 days of life.
Design, Setting, and Participants: This population-based cohort study used a 20% random sample of Medicare fee-for-service beneficiaries who had an acute care hospitalization in the last 30 days of life and died between January 1, 2000, and December 31, 2017. Sociodemographic, diagnosis, and comorbidity data were obtained from Medicare claims data. Data analysis was performed from September 2019 to July 2020.
Exposures: Use of NIV or IMV.
Main Outcomes and Measures: Validated International Classification of Diseases, Ninth Revision, Clinical Modification or International Statistical Classification of Diseases, Tenth Revision, Clinical Modification procedure codes were reviewed to identify use of NIV, IMV, both NIV and IMV, or none. Four subcohorts of Medicare beneficiaries were identified using primary admitting diagnosis codes (chronic obstructive pulmonary disease [COPD], congested heart failure [CHF], cancer, and dementia). Measures of end-of-life care included in-hospital death (acute care setting), hospice enrollment at death, and hospice enrollment in the last 3 days of life. Random-effects logistic regression examined NIV and IMV use adjusted for sociodemographic characteristics, admitting diagnosis, and comorbidities.
Results: A total of 2 470 435 Medicare beneficiaries (1 353 798 women [54.8%]; mean [SD] age, 82.2 [8.2] years) were hospitalized within 30 days of death. Compared with 2000, the adjusted odds ratio (AOR) for the increase in NIV use was 2.63 (95% CI, 2.46-2.82; % receipt: 0.8% vs 2.0%) for 2005 and 11.84 (95% CI, 11.11-12.61; % receipt: 0.8% vs 7.1%) for 2017. Compared with 2000, the AOR for the increase in IMV use was 1.04 (95% CI, 1.02-1.06; % receipt: 15.0% vs 15.2%) for 2005 and 1.63 (95% CI, 1.59-1.66; % receipt: 15.0% vs 18.2%) for 2017. In subanalyses comparing 2017 with 2000, similar trends found increased NIV among patients with CHF (% receipt: 1.4% vs 14.2%; AOR, 14.14 [95% CI, 11.77-16.98]) and COPD (% receipt: 2.7% vs 14.5%; AOR, 8.22 [95% CI, 6.42-10.52]), with reciprocal stabilization in IMV use among patients with CHF (% receipt: 11.1% vs 7.8%; AOR, 1.07 [95% CI, 0.95-1.19]) and COPD (% receipt: 17.4% vs 13.2%; AOR, 1.03 [95% CI, 0.88-1.21]). The AOR for increased NIV use was 10.82 (95% CI, 8.16-14.34; % receipt: 0.4% vs 3.5%) among decedents with cancer and 9.62 (95% CI, 7.61-12.15; % receipt: 0.6% vs 5.2%) among decedents with dementia. The AOR for increased IMV use was 1.40 (95% CI, 1.26-1.55; % receipt: 6.2% vs 7.6%) among decedents with cancer and 1.28 (95% CI, 1.17-1.41; % receipt: 5.7% vs 6.2%) among decedents with dementia. Among decedents with NIV vs IMV use, lower rates of in-hospital death (50.3% [95% CI, 49.3%-51.3%] vs 76.7% [95% CI, 75.9%-77.5%]) and hospice enrollment in the last 3 days of life (57.7% [95% CI, 56.2%-59.3%] vs 63.0% [95% CI, 60.9%-65.1%]) were observed along with higher rates of hospice enrollment (41.3% [95% CI, 40.4%-42.3%] vs 20.0% [95% CI, 19.2%-20.7%]).
Conclusions and Relevance: This study found that the use of NIV rapidly increased from 2000 through 2017 among Medicare beneficiaries at the end of life, especially among persons with cancer and dementia. The findings suggest that trials to evaluate the outcomes of NIV are warranted to inform discussions about the goals of this therapy between clinicians and patients and their health care proxies.
Objectives: There is scarce information about sedation in nursing homes at the end of life. We aimed to assess (1) the use of sedatives generally and “sedatives with continuous effect,” based on objective operational criteria, within the last week of life in nursing homes and (2) factors associated with this treatment.
Design: Retrospective cohort study, using the nursing homes' medical records.
Setting and Participants: Residents who died in 4 German nursing homes from January 2015 to December 2017 and whose medical records were available (n = 512).
Methods: Sedatives analyzed were those recommended by guidelines for “palliative sedation”: benzodiazepines, levomepromazine, haloperidol (=5 mg/d), and propofol. The definition of “sedatives with continuous effect” and doses judged as at least moderately sedating were consented by palliative care clinicians and pharmacists, based on the literature. Descriptive statistics and multivariate logistic regression analysis were performed (R version 3.6.1).
Results: Overall, 110/512 (21%) deceased residents received a sedative at least once during the last week of life, 46/512 (9%) “sedatives with continuous effect.” Oral lorazepam was used most frequently. Eleven of 512 (2%) residents received doses judged as at least moderately sedating. The term sedation was not used. Most frequent indications were agitation (58/110; 53%) and anxiety (35/110; 32%); no indication was noted for 36/110 (33%) residents. The resident's involvement in the decision for sedatives was documented in 3/110 (3%). Multivariate logistic regression analysis showed significant associations between use of sedatives and age (OR = 0.94, P < .001) as well as institution (P < .001).
Conclusions and Implications: Our data indicate a lower prevalence of sedation compared to international data and considerable differences regarding prevalence between institutions. These differences, potential setting-specific challenges, and need for support measures for consistent best practice of sedation in nursing homes should be further explored.
BACKGROUND: In recent years there has been increasing attention for the prevalence and prevention of burnout among healthcare professionals. There is unclarity about prevalence of burnout in healthcare professionals providing palliative care and little is known about effective interventions in this area.
AIM: To investigate the prevalence of (symptoms of) burnout in healthcare professionals providing palliative care and what interventions may reduce symptoms of burnout in this population.
DESIGN: A systematic literature review based on criteria of the PRISMA statement was performed on prevalence of burnout in healthcare professionals providing palliative care and interventions aimed at preventing burnout.
DATA SOURCES: PubMed, PsycInfo and Cinahl were searched for studies published from 2008 to 2020. Quality of the studies was assessed using the method of Hawkers for systematically reviewing research.
RESULTS: In total 59 studies were included. Burnout among healthcare professionals providing palliative care ranged from 3% to 66%. No major differences in prevalence were found between nurses and physicians. Healthcare professionals providing palliative care in general settings experience more symptoms of burnout than those in specialised palliative care settings. Ten studies reported on the effects of interventions aimed at preventing burnout. Reduction of one or more symptoms of burnout after the intervention was reported in six studies which were aimed at learning meditation, improving communication skills, peer-coaching and art-therapy based supervision.
CONCLUSION: The range of burnout among healthcare professionals providing palliative care varies widely. Interventions based on meditation, communication training, peer-coaching and art-therapy based supervision have positive effects but long-term outcomes are not known yet.
Palliative care nurses are exposed to hard situations, death, and duel feelings in their daily practice. These, and other work stressors, can favor burnout development. Thus, it is important to analyze the prevalence and risk factors of burnout in palliative care nurses and estimate its prevalence. A systematic review and meta-analysis was done with quantitative primary studies. n = 15 studies were included with n = 6 studies including information for the meta-analysis. The meta-analytic prevalence estimation of emotional exhaustion was 24% (95% CI 16-34%), for depersonalization was 30% (95% CI 18-44%) and for low personal accomplishment was 28% with a sample of n = 693 palliative care nurses. The main variables related with burnout are occupational variables followed by psychological variables. Some interventions to improve working conditions of palliative care nurses should be implemented to reduce burnout.
INTRODUCTION: Cancer prevalence (people alive on a certain date in a population who previously had a cancer diagnosis) is expected to increase in the United States and Europe due to improvements in survival and population aging. Examination of prevalence by phase of care allows us to identify subgroups of patients according to their care trajectories, thus allowing us to improve health care planning, resource allocation, and calculation of costs.
METHODS: A new method to estimate prevalence by phase of care using grouped data is illustrated. Prevalence is divided into 3 mutually exclusive phases: initial, continuing, and end-of-life. An application to US and Italian data is applied to prevalent cases diagnosed with colon-rectum, stomach, lung, or breast cancer.
RESULTS: The distribution of phase of care prevalence estimated by cancer type and sex and results from the two datasets are very similar. Most survivors are in the continuing phase; the end-of-life phase is larger for cancers with worse prognosis. All phases prevalence is generally higher in the Italian than in the US dataset, except for lung cancer in women, where prevalence proportion in the Italian dataset is 30% lower than in the United States.
DISCUSSION: Incidence, survival, and population age structure are the main determinants of prevalence and they can affect differences in all phases of prevalence, as well as in discrete phases. Incidence is the most influential determinant. Ours is the first study that compares prevalence by phase of care between two populations in Italy and the United States. Despite great differences in health care management in the two countries, we found extremely similar distribution of survivors by phase of care for most cancer sites under study.
Frailty assessed using Clinical Frailty Scale (CFS) is a good predictor of adverse clinical events including mortality in older people. CFS is also an essential criterion for determining ceilings of care in people with COVID-19. Our aims were to assess the prevalence of frailty in older patients hospitalised with COVID-19, their sex and age distribution, and the completion rate of the CFS tool in evaluating frailty.
Methods: Data were collected from thirteen sites. CFS was assessed routinely at the time of admission to hospital and ranged from 1 (very fit) to 9 (terminally ill). The completion rate of the CFS was assessed. The presence of major comorbidities such as diabetes and cardiovascular disease was noted.
Results: A total of 1277 older patients with COVID-19, aged = 65 (79.9 ± 8.1) years were included in the study, with 98.5% having fully completed CFS. The total prevalence of frailty (CFS = 5) was 66.9%, being higher in women than men (75.2% vs. 59.4%, p < 0.001). Frailty was found in 161 (44%) patients aged 65–74 years, 352 (69%) in 75–84 years, and 341 (85%) in =85 years groups, and increased across the age groups (<0.0001, test for trend).
Conclusion: Frailty was prevalent in our cohort of older people admitted to hospital with COVID-19. This indicates that older people who are also frail, who go on to contract COVID-19 may have disease severity significant enough to warrant hospitalization. These data may help inform health care planners and targeted interventions and appropriate management for the frail older person.
Some older persons develop a persistent death wish without being severely ill, often referred to as “completed life” or “tiredness of life”. In the Netherlands and Belgium, the question whether these persons should have legal options for euthanasia or physician-assisted suicide (EAS) is intensely debated. Our main aim was to investigate the prevalence and characteristics of older adults with a persistent death wish without severe illness, as the lack of this knowledge is a crucial problem in de debate.
OBJECTIVE: To investigate the prevalence of palliative sedation use and related factors.
METHODS: An observational study based on data collected via electronic questionnaire comprising 23 close-ended questions and sent to physicians living and working in the state of São Paulo. Demographic data, prevalence and frequency of palliative sedation use, participant's familiarity with the practice and related motivating factors were analyzed. In order to minimize memory bias, questions addressing use frequency and motivating factors were limited to the last year prior to survey completion date. Descriptive statistics were used to summarize data.
RESULTS: In total, 20,168 e-mails were sent and 324 valid answers obtained, resulting in 2% adherence. The overall prevalence of palliative sedation use over the course of professional practice was 68%. However, only 48% of respondents reported having used palliative sedation during the last year, primarily to relieve pain (35%). The frequency of use ranged from one to six times (66%) during the study period and the main reason for not using was the lack of eligible patients (64%). Approximately 83% of physicians felt comfortable using palliative sedation but only 26% reported having specific academic training in this field.
CONCLUSION: The prevalence of palliative sedation use is high, the primary indication being pain relief. However, frequency of use is low due to lack of eligible patients.
CONTEXT: Certain treatments are potentially inappropriate when administered to nursing homes residents at the end of life and should be carefully considered. An international comparison of potentially inappropriate treatments allows insight into common issues and country-specific challenges of end-of-life care in nursing homes and helps direct health care policy in this area.
OBJECTIVES: To estimate the prevalence of potentially inappropriate treatments in the last week of life in nursing home residents, and analyze the differences in prevalence between countries.
METHODS: A cross-sectional study of deceased residents in nursing homes (2015) in six European countries: Belgium (Flanders), England, Finland, Italy, the Netherlands and Poland. Potentially inappropriate treatments included: enteral administration of nutrition, parental administration of nutrition, artificial fluids, resuscitation, artificial ventilation, blood transfusion, chemotherapy/radiotherapy, dialysis, surgery, antibiotics, statins, antidiabetics, new oral anticoagulants. Nurses were questioned about whether these treatments were administered in the last week of life.
RESULTS: We included 1,384 deceased residents from 322 nursing homes. In most countries, potentially inappropriate treatments were rarely used, with a maximum of 18.3% of residents receiving at least one treatment in Poland. Exceptions were antibiotics in all countries (between 11.3% in Belgium and 45% in Poland), artificial nutrition and hydration in Poland (54.3%) and Italy (41%) and antidiabetics in Poland (19.7%).
CONCLUSION: Although the prevalence of potentially inappropriate treatments in the last week of life was generally low, antibiotics were frequently prescribed in all countries. In Poland and Italy, the prevalence of artificial administration of food/fluids in the last week of life was high, possibly reflecting country differences in legislation, care organization and culture, and the palliative care competences of staff.
BACKGROUND: Cardiopulmonary resuscitation (CPR) is a medical emergency intervention aimed at ending a life-threatening cardiovascular arrest as quickly as possible. However, the medical ethics of starting CPR in patients who have incurable and terminal disease is a matter of controversy. This ethical dilemma affects cancer patients in particular, as they are often suffering from advanced disease in a palliative situation. Few data are as yet available concerning the prevalence of CPR in patients with terminal cancer.
METHODS: A population-based cross-sectional study was carried out on the basis of death certificates of two large cities in Germany evaluated for 2017. Medical data on resuscitation and cause of death were analyzed. Cancer patients with or without a palliative situation were identified, and the prevalence of resuscitation in these patients was determined. In addition, factors influencing resuscitation were calculated using binary multivariate regression.
RESULTS: A total of 8,496 persons died, 32.1% of whom [2,723] were cancer patients. A palliative situation was present in 80.9% of the cancer patients [2,202]. A total of 163 cancer patients and 1,006 individuals without cancer were resuscitated at the end of life, representing prevalences of 6.0% (95% CI, 5.1-6.9%) and 17.4% (95% CI, 16.4-18.4%), respectively. Cancer patients with a palliative disease status received CPR in 3.4% of cases (95% CI, 2.6-4.2%). More than half of the resuscitations were performed in hospital (57.7% of resuscitated persons and 68.7% of cancer patients). Sex, age, presence of a palliative situation, and care provided by a specialized outpatient palliative service were found to be independent influencing factors.
CONCLUSIONS: Six in 100 cancer patients, and slightly more than three in 100 cancer patients with a palliative disease status, undergo CPR at the end of their lives. Thus, the indication for resuscitation in advanced cancer patients is handled with care and responsibility in Germany.
Background: Patients in palliative care are the population cohort that most frequently develop pressure injuries, severely impacting their quality of life. Data from prospective studies on the prevalence and incidence of pressure injuries in hospices are lacking.
Aim: To describe the point prevalence and cumulative incidence of pressure injuries in patients admitted to residential hospices, and to analyze their predictive factors over time.
Design: Multicentre prospective longitudinal observational study.
Setting/participants: Adult patients (n = 992) enrolled in 13 Italian residential hospices, with a minimum sample of 280 for each macro-region (North, center, South/Islands).
Methods: Assessments including the Karnofsky Performance Status, Braden, Edmonton Symptom Assessment System Revised scales and pressure injury staging according to National Pressure Ulcer Advisory Panel were conducted at least every four days, from admission to patients’ death/discharge.
Results: The 7,967 observations recorded provided prevalence and incidence rates of 34.1% and 26.5%, respectively. The logistic regression model showed non-cancer disease (OR = 2.39, 95%CI = 1.65–3.47), age >80 (OR = 2.01, 95%CI = 1.49–2.71), Braden score ‘at risk’ (OR = 1.92, 95%CI = 1.17–3.14), urinary catheter (OR = 1.96, 95%CI = 1.40–2.75), drowsiness (OR = 1.41, 95%CI = 1.02–1.95) and artificial nutrition (OR = 1.47, 95%CI = 1.01–2.14) as the variables associated with pressure injury at admission. The generalized estimating equations models, built on the timeframes for observation groups, revealed male gender (OR = 1.68, 95%CI = 1.01–2.79) and Braden score ‘at risk’ (OR = 4.45, 95%CI = 1.74–11.34) as predictive factors of a new pressure injury developed up to three weeks before a patient's death, while in the last ten days of life these predictors were replaced by diagnosis of cancer (OR = 1.80, 95%CI = 1.11–2.91), worsening pain (OR = 1.65, 95%CI = 1.10–2.49), drowsiness (OR = 1.79, 95%CI = 1.25–2.57) and dyspnea (OR = 1.48, 95%CI = 1.01–2.18).
Conclusions: The high incidence and prevalence of pressure injuries confirm the importance of palliative care nurses continuously focusing on prevention and management strategies. In the last three weeks of a patient's life, the predictive power of the Braden scale for a new pressure injury is not confirmed, throwing doubt on the effectiveness of aimed interventions at modifying risk factors. Along the different disease trajectories, pressure injuries developed during the instability/worsening phases of illness, occurring before hospice admission for non-cancer patients and in the end-of-life phase for cancer patients. Despite continuous provision of appropriate interventions, most of the new pressure injuries were detected during the last ten days of a patient's’ life and assessed as 'unavoidable'. These results are crucial to guiding palliative care nursing plans during the different phases of illness, and to predicting care needs, possible management strategies (‘wound management’ vs. ‘wound palliation’), and resource utilization.
INTRODUCTION: Studies have suggested 5-20% of paediatric ICU patients may receive care felt to be futile. No data exists on the prevalence and impact of futile care in the Paediatric Cardiac ICU. The aim is to determine the prevalence and economic impact of futile care.
MATERIALS AND METHOD: Retrospective cohort of patients with congenital cardiac disease 0-21 years old, with length of stay >30 days and died (2015-2018). Documentation of futility by the medical team was retrospectively and independently reviewed.
RESULTS: Of the 127 deaths during the study period, 51 (40%) had hospitalisation >30 days, 13 (25%) had received futile care and 26 (51%) withdrew life-sustaining treatment. Futile care comprised 0.69% of total patient days with no difference in charges from patients not receiving futile care. There was no difference in insurance, single motherhood, education, income, poverty, or unemployment in families continuing futile care or electing withdrawal of life-sustaining treatment. Black families were less likely than White families to elect for withdrawal (p = 0.01), and Hispanic families were more likely to continue futile care than non-Hispanics (p = 0.044).
CONCLUSIONS: This is the first study to examine the impact of futile care and characteristics in the paediatric cardiac ICU. Black families were less likely to elect for withdrawal, while Hispanic families more likely to continue futile care. Futile care comprised 0.69% of bed days and little burden on resources. Cultural factors should be investigated to better support families through end-of-life decisions.
OBJECTIVES: Family meetings (FMs) between clinicians, patients and family are recommended as a valuable communication and care planning method in the delivery of palliative care. However, there is a dearth of knowledge regarding FM characteristics, with few studies describing the prevalence, circumstances and content of FMs. The aims of this study were to: (1) measure the prevalence of FMs, (2) examine circumstance and timing of FMs, and (3) explore the content of FMs.
METHODS: A retrospective medical record audit was conducted of 200 patients who died in an Australian hospital of an expected death from advanced disease. Details of FMs were collected using an audit tool, along with patient demographics and admission data.
RESULTS: 33 patients (16.5%) had at least one FM during their inpatient stay. The majority of FMs occurred for patients admitted to an inpatient palliative care unit (59.5%) and were most commonly facilitated by doctors (81.0%). Patient attendance was frequent (40.5%). FM content fell into six categories: medical information, supportive communication behaviours of clinicians, psychosocial support for patients and families, end-of-life discussions, discharge planning and administrative arrangements.
CONCLUSIONS: Despite the benefits FMs confer, FMs appear to be infrequently used at the end of life. When FMs are used, there is a strong medical focus on both facilitation and content. Available FM documentation tools also appear to be underused. Clinicians are encouraged to have a greater understanding of FMs to optimise their use and adopt a proactive and structured approach to the conduct and documentation of FMs.
Objective: The prevalence of life-limiting conditions in children in Australia is unknown; such data are needed to inform health service planning for paediatric palliative care. The aim of this study was to estimate the prevalence of life-limiting conditions for children and young people aged 0-21 years living in Queensland, Australia.
Methods: An observational study using linked administrative health data from the 2011 and 2016 calendar years was performed for all individuals with an International Statistical Classification of Diseases and Related Health Problems 10th Revision Australian Modification code relating to a life-limiting condition eligible for palliative care recorded against an admission to a public or private hospital and health service provider in Queensland or against a cause or underlying cause of death in the Queensland Registrar General Deaths.
Results: The overall prevalence of life-limiting conditions per 10000 population increased from 35.2 (95% confidence interval (CI) 34.2-36.2) in 2011 to 43.2 (95% CI 42.1-44.4) in 2016. This increase in prevalence was greatest for children <1 year of age and for those who identified as Aboriginal and Torres Strait Islander.
Conclusion: This study has estimated the prevalence of life-limiting conditions for children and young people aged 0-21 years living in Queensland. Estimation of the number of children and young people with life-limiting conditions can inform health service planning for paediatric palliative care in Queensland. Future research is needed to identify the number of children and young people with life-limiting conditions who do not have an admitted episode. What is known about the topic? Data from the UK indicate that the prevalence of life-limiting conditions among children and young people is increasing. However, such data are not available for the Australian population. Because prevalence data can be affected by population characteristics, it is important to establish country-specific epidemiological data rather than extrapolating data from other countries. Country-specific data can inform health planners and policy makers of the scale of the problem within a geographical and demographic context. This is essential for Australia given the diverse geographical and demographic characteristics and specific needs of Aboriginal and Torres Strait Islander peoples. What does this paper add? This study is the first to provide an estimate of the prevalence of life-limiting conditions in children and young people aged 0-21 years in Queensland. Estimates include the prevalence of life-limiting conditions in children and young people who identify as being of Aboriginal and/or Torres Strait Islander descent. What are the implications for practitioners? The prevalence of life-limiting conditions in Queensland is greater than previously thought. There is a need to grow both a generalist and specialist paediatric palliative care workforce in response to this increasing prevalence. The estimates of prevalence proportions from this study provide the foundation on which future health service activities can be built because they provide country-specific clinical and demographic characteristics.
Objectives: To examine palliative care needs of advanced cancer patients and their informal caregivers and correlates of their needs within Chinese context.
Methods: This was a cross-sectional survey conducted in two study sites in Mainland China. Patients and caregivers were recruited in dyads. Patients completed the following questionnaires: Problems and Needs in Palliative Care-short version, Hospital Anxiety and Depression Scale (HADS), Edmonton Symptom Assessment Scale (ESAS), Medical Outcomes Study-Social Support Survey (MOS-SSS), Brief Coping Orientation to Problems Experienced Scale (Brief-COPE), and Quality-of-Life Questionnaire Core 15-Palliative Care Scale. Questionnaires for caregivers were as follows: Comprehensive Needs Assessment Tool in Cancer for Caregivers, HADS, ESAS, MOS-SSS, Brief-COPE, and Caregiver Quality of Life Index-Cancer. All of the outcome variables were selected based on a conceptual framework of palliative care needs assessment.
Results: Four hundred nineteen patient-caregiver dyads completed this survey. Patients’ unmet palliative care needs were mainly related to financial (85.2%), informational (82.3%), physical (pain) (69.7%), and psychological (64.9%) domains. Caregivers’ commonly reported unmet needs mainly focused on the domains of healthcare staff (95.0%), information (92.1%), and hospital facilities and services (90.5%). Patients’ greater severity of symptom distress, presence of anxiety and/or depression, use of coping strategies particularly the less use of problem-focused coping, and caregivers’ poorer quality of life were identified as key negative predictors of the needs of both patients and caregivers (p < 0.05).
Conclusions: Both patients and caregivers had context-bounded palliative care needs. In addition to increasing the amount of external asistance, more emphasis should be placed on screening for physical and psychological distress, the use of coping strategies, and the well-being of caregivers to help identify those in need for more clinical attention and specific interventions.