Introduction: Including palliative care (PC) in overloaded medical curricula is a challenge, especially where there is a lack of PC specialists. We hypothesised that non-specialised rotations could provide meaningful PC learning when there are enough clinical experiences, with adequate feedback.
Objective: Observe the effects of including PC topics in non-specialised placements for undergraduate medical students in two different medical schools.
Design: Observational prospective study.
Setting: Medical schools in Brazil.
Participants: 134 sixth-year medical students of two medical schools.
Methods: This was a longitudinal study that observed the development of Self-efficacy in Palliative Care (SEPC) and Thanatophobia (TS) in sixth-year medical students in different non-specialised clinical rotations in two Brazilian medical schools (MS1 and MS2). We enrolled 78 students in MS1 during the Emergency and Critical Care rotation and 56 students in MS2 during the rotation in Anaesthesiology. Both schools provide PC discussions with different learning environment and approaches.
Primary outcomes: SEPC and TS Scales were used to assess students at the beginning and the end of the rotations.
Results: In both schools’ students had an increase in SEPC and a decrease in TS scores.
Conclusion: Non-specialised rotations that consider PC competencies as core aspects of being a doctor can be effective to develop SEPC and decrease TS levels.
OBJECTIVES: To understand the experiences and perceptions of healthcare services of children with life-limiting and life-threatening conditions and their family members, including palliative care.
DESIGN: Longitudinal qualitative interview study with children and their family members. Up to three in-depth interviews were conducted over 13 months with each child and family. Data were analysed using thematic analysis.
SETTING: Community and hospital settings in the West Midlands, UK.
PARTICIPANTS: Children with a diverse range of life-limiting and life-threatening conditions, aged between 5 and 18 years, and their family members.
FINDINGS: 31 participants from 14 families including 10 children took part in 41 interviews. Two children died during the course of the study. Children accepted their conditions as part of life and had other priorities for living. Experiences of 'fighting' a fragmented healthcare system that focused on the biomedical aspects of their care were described. The possibility of death was rarely openly discussed. Palliative care tended to be conceptualised as a distinct service or phase of a child's condition, rather than a broad approach. Access to palliative care depended on the availability of specialist services, and on trusted interpersonal relationships with healthcare professionals who could share uncertainty and the family's emotional burden.
CONCLUSIONS: There is an urgent need to create a more child and family centred approach that enables palliative care to be truly integrated into the wider healthcare of children with life-limiting and life-threatening conditions. Trusted, interpersonal relationships with healthcare professionals, and more effective coordination of care are fundamental to achieving this, and should be valued and enabled throughout the healthcare system.
Objectives: To analyze the association of an incentivization program to promote death outside of hospitals with changes in place of death.
Design: A longitudinal observational study using national databases.
Setting and Participants: Participants comprised Japanese decedents (=65 years) who had used long-term care insurance services and died between April 2007 and March 2014.
Methods: Using a database of Japanese long-term care insurance service claims, subjects were divided into community-dwelling and residential aged care (RAC) facility groups. Based on national death records, change in place of death after the Japanese government initiated incentivization program was observed using logistic regression.
Results: Hospital deaths decreased by 8.7% over time, mainly due to an increase in RAC facility deaths. The incentivization program was more associated with decreased in-hospital deaths for older adults in RAC facilities than community-dwelling older adults.
Conclusions and Implications: In Japan, the proportion of in-hospital deaths of frail older adults decreased since the health services system introduced the incentivization program for end-of-life care outside of hospitals. The shift of place of death from hospitals to different locations was more prominent among residents of RAC facilities, where informal care from laymen was required less, than among community residents.
CONTEXT: Fatigue is the most commonly reported symptom in life-limiting illnesses, though not much is known about the distress it causes patients as they approach death.
OBJECTIVES: To map the trajectory of distress from fatigue reported by an Australian palliative care population in the last 60 days leading up to death.
METHODS: A prospective, longitudinal, consecutive cohort study using national data from the Australian Palliative Care Outcomes Collaboration between 1 July 2013 and 31 December 2018. Patients were included if they had at least one measurement of fatigue on a 0-10 numerical rating scale in the 60 days before death. Descriptive statistics were used to analyse patients by diagnostic cohort and functional status.
RESULTS: A total of 116,604 patients from 203 specialist palliative care services were analysed, providing 501,104 data points. Distress from fatigue affected up to 80% of patients referred to palliative care, with the majority experiencing moderate or severe distress. Malignant and non-malignant diagnoses were equally affected, with the neurological cohort showing the greatest variability. The degree of distress correlated with a patient's functional level; it worsened as a patient's function declined until a patient became bedbound when the reporting of distress reduced.
CONCLUSIONS: Distress from fatigue is high in this cohort of patients. Interventions to reduce this distress need to be a research priority.
OBJECTIVES: To describe changes in the occurrence of restricting symptoms at the end of life from 1998 to 2019 and compare these changes according to the condition leading to death.
DESIGN: Prospective longitudinal study.
SETTING: Greater New Haven, CT.
PARTICIPANTS: A total of 665 decedents from a cohort of 754 community-living persons, 70 years or older.
MEASUREMENTS: The occurrence of 16 restricting symptoms was ascertained during monthly interviews. Information on the conditions leading to death was obtained from death certificates and comprehensive assessments that were completed every 18-months. For each restricting symptom, adjusted rates (per 100 person-months) were calculated separately for six multiyear time intervals.
RESULTS: From 1998 to 2019, rates decreased for five (31.3%) restricting symptoms (difficulty sleeping; chest pain or tightness; shortness of breath; cold or flu symptoms; and nausea, vomiting, or diarrhea), increased for three (18.8%: arm or leg weakness; urinary incontinence; and memory or thinking problem), and changed little for the other eight (50.0%: poor eyesight; anxiety; depression; musculoskeletal pain; fatigue; dizziness or unsteadiness; frequent or painful urination; and swelling in feet or ankles). The decrease in rates was most pronounced for shortness of breath, with a reduction from 15.0 (95% credible interval = 11.7-18.6) in 1998 to 2001 to 8.2 (95% credible interval = 5.9-10.5) in 2014 to 2019, yielding a rate ratio (95% credible interval) of 0.92 (0.86-0.98). When evaluated according to the condition leading to death, the results were similar, with 10 of the 13 statistically significant rate ratios representing decreases in rates over time and only 3 representing increases.
CONCLUSION: The occurrence of most restricting symptoms at the end of life has been decreasing or stable over the past two decades. These results suggest that end-of-life care has been improving, although additional efforts will be needed to further reduce symptom burden at the end of life.
Objectives: Evidence linking end-of-life-care quality in ICUs to bereaved family members’ psychologic distress remains limited by methodological insufficiencies of the few studies on this topic. To examine comprehensively the associations of family surrogates’ severe anxiety and depressive symptoms with end-of-life-care quality in ICUs over their first 6 months of bereavement.
Design: Prospective, longitudinal, observational study.
Setting/Participants: Family surrogates (n = 278) were consecutively recruited from seven medical ICUs at two academically affiliated medical centers in Taiwan.
Measurements and Statistical Analysis: Family surrogates’ anxiety and depressive symptoms were assessed 1, 3, and 6 months postloss using the Hospital Anxiety and Depression Scale. Family satisfaction with end-of-life care in ICUs was assessed 1-month postloss by the Family Satisfaction in the ICU questionnaire. Patients’ end-of-life care was documented over the patient’s ICU stay. Associations of severe anxiety and depressive symptoms (scores = 8 for each subscale) with end-of-life-care quality in ICUs (documented by patient care received and family satisfaction with end-of-life care in ICUs) were examined by multivariate logistic regression models with generalized estimating equation.
Main Results: Prevalence of severe anxiety and depressive symptoms decreased significantly over time. Surrogates’ lower likelihood of severe anxiety or depressive symptoms 3–6 month postloss was associated with death without cardiopulmonary resuscitation, withdrawing life-sustaining treatments, and higher family satisfaction with end-of-life care in ICUs. Bereaved surrogates’ higher likelihood of these symptoms was associated with physician-surrogate prognostic communication and conducting family meetings before patients died.
Conclusions: End-of-life-care quality in ICUs is associated with bereaved surrogates’ psychologic well-being. Enhancing end-of-life-care quality in ICUs by improving the process of end-of-life care, for example, promoting death without cardiopulmonary resuscitation, withdrawing life-sustaining treatments, and increasing family satisfaction with end-of-life care, can lighten bereaved family surrogates’ severe anxiety symptoms and severe depressive symptoms.
PURPOSE: End-of-life cancer care varies widely, and very few centers evaluate it systematically. Our objective was to assess indicators of the aggressiveness of end-of-life cancer care in clinical practice.
METHODS: An observational, longitudinal, and retrospective cohort study was conducted at a tertiary hospital. Eligible patients were at least 18 years old, had a solid tumor, were followed up by the Oncology Department, and had died because of cancer or associated complications during 2017. We used the criteria of Earle et al. (J Clin Oncol 21(6):1133-1138, 2003) to assess the aggressiveness of care. Multivariate logistic regression analyses were performed to characterize factors associated with aggressiveness of therapy.
RESULTS: The study population comprised 684 patients. Eighty-eight patients (12.9%) received anti-cancer treatment during the last 14 days of their lives, and 62 patients (9.1%) started a new treatment line in the last 30 days. During the last month of life, 102 patients (14.9%) visited the ER, 80 patients (11.7%) were hospitalized more than once, and 26 (3.8%) were admitted to the ICU. A total of 326 patients (47.7%) died in the acute care unit. A total of 417 patients (61.0%) were followed by the Palliative Care Unit, and in 54 cases (13.0%), this care started during the last 3 days of life.
CONCLUSIONS: The use of anti-cancer therapies and health care services in our clinical practice, except for the ICU, did not meet the Earle criteria for high-quality care. Concerning hospice care, more than half of the patients received hospice services before death, although in some cases, this care started close to the time of death.
Purpose: Identifying mortality risk factors in people living in nursing homes could help healthcare professionals to individualize or develop specific plans for predicting future care demands and plan end-of-life care in this population. This study aims to identify mortality risk factors in elderly nursing home (NH) residents, based on variables adapted to this environment, routinely collected and easily accessible to their healthcare professionals.
Methods: A prospective, longitudinal, observational study of NH residents aged 65 years and older was carried out collecting sociodemographic, functional and cognitive status, nutritional variables, comorbidities, and other health variables. These variables were analyzed as mortality risk factors by Cox proportional hazard models.
Results: A total of 531 residents (75.3% female; average age 86.7 years (SD: 6.6)) were included: 25.6% had total dependence, 53.4% had moderate to severe cognitive impairment, 84.5% were malnourished or at risk of malnutrition, and 79.9% were polymedicated. Risk of mortality (hazard ratio, HR) increased in totally dependent residents (HR = 1.52; p = 0.02) and in those with moderate or severe cognitive impairment ((HR = 1.59; p = 0.031) and (HR = 1.93; p = 0.002), respectively). Male gender (HR = 1.88; p < 0.001), age =80 years (HR = 1.73; p = 0.034), hypertension (HR = 1.53; p = 0.012), atrial fibrillation/arrhythmia (HR = 1.43; p = 0.048), and previous record of pneumonia (HR = 1.65; p = 0.029) were also found to be mortality drivers.
Conclusion: Age and male gender (due to the higher prevalence of associated comorbidity in these two variables), certain comorbidities (hypertension, atrial fibrillation/arrhythmia, and pneumonia), higher functional and cognitive impairment, and frequency of medical emergency service care increased the risk of mortality in our study. Given their importance and their easy identification by healthcare professionals in nursing homes, these clinical variables should be used for planning care in institutionalized older adults.
Objective: End-of-life cancer care imposes a heavy financial burden on patients, their families, and their health insurers. The aim of this study was to explore the 8-year (2004-2011) trends in health-care costs for Taiwanese cancer decedents in their last month of life and, specifically, to assess the association of these trends with hospice care.
Materials and Methods: We conducted a population-based longitudinal study and analyzed data from Taiwan's National Health Insurance Research Database. The data consisted of not only claims information - costs of hospitalization and outpatient department visits - but also the associated patient characteristics, catastrophic illness status, hospice patient designation, and insurance system exit date (the proxy for death).
Results: A total of 11,104 cancer decedents were enrolled, and 2144 (19.3%) of these patients received hospice care. The rate of hospice service use increased from 14.9% to 21.5% over 8 years. From 2004 to 2011, the mean health-care cost per day in the last month of life increased 8.2% (from US$93 ± $108 in 2004 to US$101 ± $110 in 2011; P = 0001). We compared three groups of patients who received hospice care for more than 1 month (long-H group), received hospice care for 30 days or less (short-H group), and did not receive hospice care (non-H group). Compared to non-H group, long-H group had a significantly lower mean health-care cost per day during their last month of life (US$85.7 ± 57.3 vs. US$102.4 ± 120) (P < 0001). Furthermore, compared to short-H and non-H groups, patients in the long-H group had lower probabilities of receiving chemotherapy and visiting the emergency department more than once. They also incurred lower health-care costs (US$77.1 ± 58.1 vs. US$92.2 ± 56.0 for short-H group and US$102.4 ± 120 for non-H group) (P < 0001).
Conclusion: Health-care costs in the last month of life are increasing over time in Taiwan. Nonetheless, health-care costs for patients receiving hospice can be as much as 16.3% lower than patients not receiving hospice care. Patients receiving hospice care for more than 30 days also had lower health-care costs than those receiving care for <30 days.
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.
Background: This study compares a longitudinal population-based sample of spouses bereaved by suicide and those bereaved by other sudden deaths to determine if suicide-bereaved spouses (SBS) experience greater rates of physician-diagnosed mental disorders.
Methods: First, married individuals whose spouse died by suicide, sudden natural death (SND) and unintentional injury (UI) were compared to non-bereaved matched cohorts to determine if there were differences in mental disorder rates between bereavement groups and non-bereaved matches. Second, SBS (n = 365), spouses bereaved by SND (n = 1000), and spouses bereaved by UI (n = 270), were compared using inverse probability treatment weighting and generalized estimating equations to calculate relative rates of mental disorders 5 years before/after death.
Outcomes: All bereaved cohorts had higher rates of mental disorders compared to non-bereaved cohorts. SBS had the greatest rate of depression post-bereavement (50·96%), followed by UI (38·52%) and SND (33·70%) spouses. When comparing bereavement cohorts, a significant group-by-time interaction (P = 0·047) revealed the rate change for depression was significantly different between suicide and UI-bereaved spouses, with SBS having higher rates of depression before bereavement. SBS had increased rates of any mental disorder both pre (ARR = 1·35, 95% CI = 1·03-1·18, P<·05) and post spousal death (ARR = 1·24, 95% CI = 1·03-1·45, P<·05) when compared to UI spouses signifying pre-existing mental disorders. Post-bereavement, SBS had greater rates of depression only when compared to SND-bereaved spouses (ARR = 1·31, 95% CI = 1·10-1·55, P<·01). Interpretation: SBS have the greatest rates of depression and any mental disorder before the death of their spouse, suggesting suicide bereavement may be unique. Sudden spousal bereavement is a vulnerable time for mental disorders.
In order to plan the right palliative care for patients and their families, it is essential to have detailed information about patients' needs. To gain insight into these needs, we analyzed five Italian local palliative care networks and assessed the clinical care conditions of patients facing the complexities of advanced and chronic disease. A longitudinal, observational, noninterventional study was carried out in five Italian regions from May 2017 to November 2018. Patients who accessed the palliative care networks were monitored for 12 months. Sociodemographic, clinical, and symptom information was collected with several tools, including the Necesidades Paliativas CCOMS-ICO (NECPAL) tool, the Edmonton Symptom Assessment System (ESAS), and interRAI Palliative Care (interRAI-PC). There were 1013 patients in the study. The majority (51.7%) were recruited at home palliative care units. Cancer was the most frequent diagnosis (85.4%), and most patients had at least one comorbidity (58.8%). Cancer patients reported emotional stress with severe symptoms (38.7% vs. 24.3% in noncancer patients; p = 0.001) and were less likely to have clinical frailty (13.3% vs. 43.9%; p < 0.001). Our study confirms that many patients face the last few months of life with comorbidities or extreme frailty. This study contributes to increasing the general knowledge on palliative care needs in a high-income country.
Cause of death is an important outcome in end-of-life (EOL) research. However, difficulties in assigning cause of death have been well documented. We compared causes of death in national death registrations with those reported in EOL interviews. Data were from The Irish Longitudinal Study on Ageing (TILDA), a nationally representative sample of community-dwelling adults aged 50 years and older. The kappa agreement statistic was estimated to assess the level of agreement between two methods: cause of death reported in EOL interviews and those recorded in official death registrations. There was moderate agreement between underlying cause of death recorded on death certificates and those reported in EOL interviews. Discrepancies in reporting in EOL interviews were systematic with better agreement found among younger decedents and where the EOL informant was the decedents' partner/spouse. We have shown that EOL interviews may have limited utility if the main goal is to understand the predictors and antecedents of different causes of death.
Background: Informal carers are essential in enabling discharge home from hospital at end of life and supporting palliative patients at home, but are often ill-prepared for the role. Carers’ support needs are rarely considered at discharge. If carers are less able to cope with home care, patient care may suffer and readmission may become more likely.
Aim: To investigate the implementation of an evidence-based Carer Support Needs Assessment Tool (CSNAT) intervention to support carers during hospital discharge at end of life.
Design: Longitudinal qualitative study with thematic analysis.
Setting/participants: One National Health Service Trust in England: 12 hospital practitioners, one hospital administrator and four community practitioners. We provided training in CSNAT intervention use and implementation. Practitioners delivered the intervention for 6 months. Data collection was conducted in three phases: (1) pre-implementation interviews exploring understandings, anticipated benefits and challenges of the intervention; (2) observations of team meetings and review of intervention procedures and (3) follow-up interviews exploring experiences of working with the intervention.
Results: Despite efforts from practitioners, implementation was challenging. Three main themes captured facilitators and barriers to implementation: (1) structure and focus within carer support; (2) the ‘right’ people to implement the intervention and (3) practical implementation challenges.
Conclusions: Structure and focus may facilitate implementation, but the dominance of outcomes measurement and performance metrics in health systems may powerfully frame perceptions of the intervention and implementation decisions. There is uncertainty over who is best-placed or responsible for supporting carers around hospital discharge, and challenges in connecting with carers prior to discharge.
Objective: We studied if preferences about end-of-life care of people having an advance directive (AD) stay stable over time and if (in) stability is associated with health status.
Methods: A longitudinal cohort study with a population owning different types of ADs (n = 4638). Respondents repeatedly answered questionnaires between 2005-2010. Using hypothetical scenarios about advanced cancer and dementia we assessed preferences for continuing or forgoing resuscitation, mechanical ventilation, artificial nutrition and antibiotics. Using generalized estimated equations we analysed whether life-events and quality of life influenced changes in preferences.
Results: The proportion of respondents with stable preferences ranged from 67 to 98 %. Preferences were most stable concerning resuscitation and least stable concerning mechanical ventilation. In only a few instances we found life-events or a change in quality of life could both increase or decrease odds to change preferences.
Conclusion: Preferences concerning continuing or forgoing treatment at the end of life are stable for a majority of people with ADs, which supports their validity.
Objectives: Little is known about the experience of family caregivers of patients who require prolonged mechanical ventilation (PMV). We examined the perspectives of caregivers of patients who died after PMV to explore the role of palliative care and the quality of dying and death (QODD) in patients and understand the psychological symptoms of these caregivers.
Methods: A longitudinal study was performed in five hospitals in Taipei, Taiwan. Routine palliative care family conferences and optional consultation with a palliative care specialist were provided, and family caregivers were asked to complete surveys.
Results: In total, 136 family caregivers of 136 patients receiving PMV were recruited and underwent face-to-face baseline interviews in 2016–2017. By 2018, 61 (45%) of 136 patients had died. We successfully interviewed 30 caregivers of patients’ death to collect information on the QODD of patients and administer the Impact of Event Scale (IES), Hospital Anxiety and Depression Scale (HADS) and Center for Epidemiologic Studies Depression (CES-D) scale to caregivers. We observed that more frequent palliative care family conferences were associated with poorer QODD in patients (coefficients: -44.04% and 95% CIs -75.65 to -12.44), and more psychological symptoms among caregivers (coefficient: 9.77% and 95% CI 1.63 to 17.90 on CES-D and coefficient: 7.67% and 95% CI 0.78 to 14.55 on HADS). A higher caregiver burden at baseline correlated with lower psychological symptoms (coefficient: -0.35% and 95% CI -0.58 to -0.11 on IES and coefficient: -0.22% and 95% CI -0.40 to -0.05 on CES-D) among caregivers following the patients’ death. Caregivers’ who accepted the concept of palliative care had fewer psychological symptoms after patients’ death (coefficient: -3.29% and 95% CI -6.32 to -0.25 on IES and coefficient: -3.22% and 95% CI -5.24 to -1.20 on CES-D).
Conclusions: Palliative care conferences were more common among family members with increased distress. Higher caregiver burden and caregiver acceptance of palliative care at baseline both predicted lower levels of caregiver distress after death.
Context: Clinicians often worry that patients' recognition of the terminal nature of their illness may impair psychological well-being.
Objectives: To determine if such recognition was associated with decrements to psychological well-being that persisted over time.
Methods: About 87 patients with advanced cancer, with an oncologist-expected life expectancy of less than six months, were assessed before and after an oncology visit to discuss cancer restaging scan results and again at follow-up (median time between assessments, approximately six weeks). Prognostic understanding (PU) was assessed at previsit and postvisit, and a change score was computed. Psychological well-being was assessed at pre, post, and follow-up, and two change scores were computed (post minus pre; follow-up minus post).
Results: Changes toward more accurate PU was associated with a corresponding initial decline in psychological well-being (r = -0.33; P < 0.01) but thereafter was associated with subsequent improvements (r = 0.40; P < 0.001). This pattern remained controlling for potential confounds. Patients showed different patterns of psychological well-being change (F = 3.07, P = 0.05; F = 6.54, P < 0.01): among patients with improved PU accuracy, well-being initially decreased but subsequently recovered; by contrast, among patients with stable PU accuracy, well-being remained relatively unchanged, and among patients with decrements in PU accuracy, well-being initially improved but subsequently declined.
Conclusion: Improved PU may be associated with initial decrements in psychological well-being, followed by patients rebounding to baseline levels. Concerns about lasting psychological harm may not need to be a deterrent to having prognostic discussions with patients.
Purpose: The responsibility of taking care of terminal patients is accepted as a role of family members in Taiwan. Only a few studies have focused on the effect of palliative care consultation service (PCCS) on caregiver burden between terminal cancer family caregivers (CFCs) and non-cancer family caregivers (NCFCs). Therefore, the purpose of this study is to address the effect of PCCS on caregiver burden between CFC and NCFC over time.
Methods: A prospective longitudinal study was conducted in a medical center in northern Taiwan from July to November 2017. The participants were both terminally ill cancer and non-cancer patients who were prepared to receive PCCS, as well as their family caregivers. Characteristics including family caregivers and terminal patients and Family Caregiver Burden Scale (FCBS) were recorded pre-, 7, and 14 days following PCCS. A generalized estimating equation model was used to analyze the change in the level of family caregiver burden (FCB) between CFC and NCFC.
Results: The study revealed that there were no statistically significant differences in FCB between CFC and NCFC 7 days and 14 days after PCCS (p > 0.05). However, FCB significantly decreased in both CFC and NCFC from pre-PCCS to 14 days after PCCS (ß = - 12.67, p = 0.013). PPI of patients was the key predictor of FCB over time following PCCS (ß = 1.14, p = 0.013).
Conclusions: This study showed that PCCS can improve FCB in not only CFC but also NCFC. We suggest that PCCS should be used more widely in supporting family caregivers of terminally ill patients to reduce caregiver burden.
Background: Understanding the factors that affect the congruence between preferred and actual place of death may help providers offer clients customized end-of-life care settings. Little is known about this congruence for cancer patients in receipt of home-based palliative care.
Objectives: This study aims to determine the congruence between preferred and actual place of death among cancer patients in home-based palliative care programs.
Design: A longitudinal prospective cohort study was conducted. Congruence between preferred and actual place of death was measured. Both univariate and multivariate analyses were used to assess the determinants of achieving a preferred place of death. From July 2010 to August 2012, a total of 290 caregivers were interviewed biweekly over the course of their palliative care trajectory from entry to the program and death.
Results: The overall congruence between preferred and actual place of death was 71.72%. Home was the most preferred place of death. The intensity of home-based nursing visits and hours of care from personal support workers (PSWs) increased the likelihood of achieving death in a preferred setting.
Conclusions: The provision of care by home-based nurse visits and PSWs contributed to achieving a greater congruence between preferred and actual place of death. This finding highlights the importance of formal care providers in signaling and executing the preferences of clients in receipt of home-based palliative care.
Survival estimates are very important to patients with terminal cancer. The C-reactive protein (CRP)/albumin ratio is associated with cancer outcomes. However, few studies have investigated the dose-response association in terminal cancer patients. Therefore, we aimed to evaluate the association between the CRP/albumin ratio and mortality in terminal cancer patients using a longitudinal analysis. We retrospectively investigated the electronic medical records of 435 inpatients with terminal cancer admitted to the palliative care unit of Yeouido St. Mary's Hospital between October 8, 2015, and January 17, 2018. In total, 382 patients with terminal cancer were enrolled in the study. The serum CRP/albumin ratio measured at admission had a linear dose-response relationship with the risk of death among the terminal cancer patients (P for linearity = .011). The multivariate analyses showed that the CRP/albumin ratio was an independent prognostic factor (Model 1, CRP/albumin ratio >48.53 × 10-4: HR = 2.68, 95% CI = 1.82–3.93; Model 2, tertile 2: HR = 1.91, 95% CI = 1.31–2.82 and tertile 3: HR = 3.66, 95% CI = 2.24–5.97). The relationship between a high CRP/albumin ratio and poor survival was a flat L-shape for survival time with an inflection point at approximately 15 days, while the relationship was not significant in terminal cancer patients who survived beyond 30 days. This study demonstrated that high CRP/albumin ratios are significantly and independently associated with the short-term survival prognosis of terminal cancer patients within 30 days.