OBJECTIVES: To compare aggressiveness of end-of-life (EoL) care for older cancer patients attributed to Medicare Shared Savings Programs with that for similar fee for service (FFS) beneficiaries not in an accountable care organization (ACO) and examine whether observed differences in EoL care utilization vary across markets that differ in ACO penetration.
DESIGN: Cross-sectional observational study comparing ACO-attributed beneficiaries with propensity score-matched beneficiaries not attributed to an ACO.
SETTING: A total of 21 hospital referral regions (HRRs) in the United States.
PARTICIPANTS: Medicare FFS beneficiaries with a cancer diagnosis who were 66 years or older and died in 2013-2014.
MEASUREMENTS: Outcome measures were claims-based quality measures of aggressive EoL care: (1) one or more intensive care unit (ICU) admissions in the last month of life, (2) two or more hospitalizations in the last month of life, (3) two or more emergency department visits in the last month of life, (4) chemotherapy 2 weeks or less before death, and (5) no hospice enrollment or hospice enrollment within 3 days of death. Analyses were adjusted for demographic and clinical characteristics of beneficiaries and practice characteristics.
RESULTS: Compared with beneficiaries not in an ACO, ACO-attributed beneficiaries had a higher rate of ICU admission during the last month of life (37.7% vs 34.0%; adjusted difference = +2.8 percentage points; 95% confidence interval (CI) = 1.0-4.6) but fewer repeated hospitalizations (14.5% vs 15.2%; adjusted difference = -1.7 percentage points; CI = -3.1 to -.3). Other measures did not differ for the two groups. Although the ICU admission rates tended to decrease as ACO-penetration rates increased (P < .01), ACO patients had higher rates of ICU admission than non-ACO patients in both medium and high ACO-penetration HRRs.
CONCLUSION: Cancer patients attributed to ACOs had fewer repeated hospitalizations but more ICU admissions in the last month of life than non-ACO patients; they had similar rates of other measures of aggressive care at the EoL. This suggests opportunities for ACOs to improve EoL care for cancer patients.
CONTEXT: Providing nonbeneficial care at the end of life and delays in initiating comfort care have been associated with provider and nurse moral distress.
OBJECTIVE: Evaluate provider and nurse moral distress when using a comfort care order set and attitudes about timing of initiating comfort care for hospitalized patients.
METHODS: Cross-sectional survey of providers (physicians, nurse practitioners, and physician assistants) and nurses at 2 large academic hospitals in 2015. Providers and nurses were surveyed about their experiences providing comfort care in an inpatient setting.
RESULTS: Two hundred five nurse and 124 provider surveys were analyzed. A greater proportion of nurses compared to providers reported experiencing moral distress "some, most, or all of the time" when using the comfort care order set (40.5% and 19.4%, respectively, P = .002). Over 60% of nurses and providers reported comfort care was generally started too late in a patient's course, with physician trainees (81.4%), as well as providers (80.9%) and nurses (84.0%) < 5 years from graduating professional school most likely to report that comfort care is generally started too late.
CONCLUSIONS: The majority of providers and nurses reported that comfort care was started too late in a patient's course. Nurses experienced higher levels of moral distress than providers when caring for patients using a comfort care order set. Further research is needed to determine what is driving this moral distress in order to tailor interventions for nurses and providers.
BACKGROUND AND OBJECTIVES: Clinical management for terminal patients should consider various aspects, particularly the patient's functional assessment, which correlates well with the short-term prognosis. The prognosis could improve if the presence of symptoms strongly associated with a poorer progression were included. The study's main objective was to assess whether the prognosis according to the Palliative Performance Scale (PPS) improved with the presence/absence of pain-dyspnoea-delirium symptoms. The secondary objective was to determine caregiver satisfaction with the transfer to medium-stay palliative care units (MSPCUs), which are prepared for medium stays of approximately one month.
PATIENTS AND METHOD: We conducted a prospective, observational, multicentre (regional) study that analysed survival in MSPCUs according to the PPS dichotomized to > 20% and = 20%. We estimated the mean survival functions using the Kaplan-Meier method and compared them according to the Cox proportional hazards ratios (HR). Caregiver satisfaction was studied using an anonymous self-administered Likert questionnaire.
RESULTS: The study included 130 patients. The PPS = 20% and PPS > 20% subgroups had a median survival of 6 (3-13) days and 21 (11-42) days, respectively, with an unadjusted mortality HR 3.1-fold greater in the PPS = 20% subgroup. The HR did not change when adjusted for the symptoms. Eighty-three percent of the caregivers found the transfer beneficial, and 40% observed better patient care.
CONCLUSIONS: For patients transferred from general hospitals to MSPCUs, PPS scores = 20% were associated with survival shorter than one week, with a 3-fold higher mortality HR than patients with PPS scores > 20%, without the analysis adjusted for the presence of pain-dyspnoea-delirium providing greater prognostic accuracy. The caregivers found benefits mainly in the convenience of the facilities and distance.
PURPOSE: The aim of the study was to evaluate the feasibility and the potential effects of the Haematological Home Care (HHC) programme for acute leukaemia (AL) patients, either in active chemotherapy or in the terminal phase of disease.
METHODS: We retrospectively assessed a group of AL patients assisted at home in terms of number of hospitalisations, accesses to emergency department and place of death. We also used historical data to evaluate potential effects of HHC.
RESULTS: The study group consisted of 44 patients, 36 of whom (82%) required palliative treatment, and eight (18%) had ongoing active chemotherapy. The mean number of hospitalisations was 0.64 (range 0-7) per patient, and the number of emergency department (ED) visits was 0.82 (range 0-4) per patient. Place of death was at home for 51.4% of patients and in hospital for 40.5%. Considering a historical group of 17 patients assisted at home the rate of hospitalisations and ED visits were 2.53 (range 0-9) and one (range 0-3), respectively. Place of death was home and hospital in 6% and 65%, respectively.
CONCLUSIONS: Haematological Home Care for AL patients is feasible and has potential positive effects in terms rate of hospitalisations and place of death.
Background: Spending on cancer patients is substantial and has increased in recent years. Accountable Care Organizations (ACOs) are arguably the most important national experiment to control healthcare spending. How ACOs are managing patients with cancer at the end of life (EOL) is largely unknown. We conducted this study with the objective of determining whether becoming an ACO is associated with subsequent changes in EOL spending or utilization among patients with cancer.
Methods: Using national Medicare claims from 2011-2015, we identified patients who died in 2012 (pre-ACO, n = 12,248) and 2015 (post-ACO, n = 12,248), assigning each decedent to a practice. ACOs were matched to non-ACOs within the same geographic region. We used a difference-in-differences model to examine changes in EOL spending and utilization associated with becoming an ACO in the Medicare Shared Savings Program for beneficiaries with cancer.
Results: We found that the introduction of ACOs had no meaningful impact on overall EOL spending in cancer patients (change in overall spending in ACOs -$1,687 versus -$1,434 in non-ACOs, difference $253, 95% CI -$1,809 to $1,304, p = 0.75). We found no changes in total patient spending by cancer type examined or by spending categories, including cancer-specific categories, radiation oncology, chemotherapy, and hospice services. Finally, emergency department visits, inpatient hospitalization, intensive care unit admissions, radiation therapy, chemotherapy, and hospice use did not meaningfully differ between ACO and non-ACO patients.
Conclusions: The introduction of ACOs does not appear to have had any meaningful effect on EOL spending or utilization for patients with a cancer diagnosis.
Severe chronic breathlessness in advanced chronic obstructive pulmonary disease (COPD) is undertreated and few patients access specialist palliative care in the years before death. This study aimed to determine if symptom palliation or a palliative approach were delivered during the final hospital admission in which death occurred. Retrospective medical record audits were completed at two Australian hospitals, with all patients who died from COPD over 12 years between 1 January 2004 and 31 December 2015 included. Of 343 patients included, 217 (63%) were male with median age 79 years (IQR 71.4–85.0). Median respiratory function: FEV1 0.80L (42% predicted), FVC 2.02L (73% predicted) and DLco 9 (42% predicted). 164 (48%) used domiciliary oxygen. Sixty (18%) patients accessed specialist palliative care and 17 (5%) wrote an advance directive prior to the final admission. In the final admission, 252 (74%) patients had their goal of care changed to aim for comfort (palliation) and 99 (29%) were referred to specialist palliative care. Two hundred and eighty-six (83%) patients received opioids and 226 (66%) received benzodiazepines, within 1 or 2 days respectively after admission to palliate symptoms. Median starting and final opioid doses were 10 mg (IQR = 5–20) and 20 mg (IQR = 7–45) oral morphine equivalent/24 h. Hospital site and year of admission were significantly associated with palliative care provision. Respiratory and general physicians provided a palliative approach to the majority of COPD patients during their terminal admission, however, few patients were referred to specialist palliative care. Similarly, there were missed opportunities to offer symptom palliation and a palliative approach in the years before death.
BACKGROUND: Currently available indicators of quality pediatric palliative care tend to focus on care provided during the end-of-life period rather than care provided throughout the disease trajectory. We adapted a previously developed instrument focused on mothers' perspectives on the quality of end-of-life care and assessed its psychometric properties with mothers and fathers of children with cancer at any stage of the illness.
METHODS: Four subscales were included in the analysis: Connect with Families, Involve Parents, Share Information Among Health Professionals, Support Siblings. The number of items across the four subscales was reduced from 31 to 15. We conducted confirmatory factor analysis, composite reliability, internal consistency, and tests of correlation between the overall scale and subscale totals and a separate question inquiring about overall quality of care. Measurement invariance between mothers and fathers was assessed.
RESULTS: A total of 533 mothers and fathers completed the survey. The four-factor model was confirmed and there were significant correlations between each subscale score and responses to the overall item on care quality. Cronbach's alpha was adequate for the scale as a whole and for each subscale ranging from 0.78 to 0.90. We also found the factor structure, means, and intercepts were similar across mothers and fathers, suggesting the tool can be used by both groups.
CONCLUSIONS: There is evidence for a four-factor structure within a new Quality of Children's Palliative Care Instrument (QCPCI) with demonstrated reliability when used with mothers and fathers of children with cancer. Ongoing assessment of the psychometric properties is needed, including testing in additional populations. However, our initial findings suggest that the QCPCI may be a helpful tool for assessing the quality of palliative care for pediatric patients anywhere along the disease trajectory from the perspective of parents.
Palliative and hospice care aims to improve quality of life of patients' relatives, but still little is known about their specific problems and needs. We present a comprehensive literature update. Narrative review to present an expert overview of peer-reviewed, English-written original research publications and reviews on psychosocial and existential problems, supportive needs as well as interventions for relatives during the patients' disease trajectory published between January 2017 and November 2018. A total of 64 publications were included. Relatives report high rates of psychological and existential distress, burden and psychological morbidity during the total disease trajectory of the patient. In addition, relatives report an alarmingly high number of unmet needs with information being the central issue. Relatives' problems and needs are part of complex systems influenced by various socio-demographic factors and patient-}relatives-interactions and dependency between different psychological phenomena. First support interventions for relatives during disease trajectory have proven feasible and secondary data from randomized studies suggest beneficial effects of providing early palliative care also for relatives. Relatives should be addressed to a still larger extent in the daily practice of palliative and hospice care, thus further research to reveal more detailed systematic information is needed to improve relatives' psychological burden and quality of life.
Despite the increasing prevalence, growing costs, and high mortality of dementia in older adults in the U.S., little is known about the course of these diseases and what care dementia patients receive in their final years of life. Using a large volume of clinical notes of dementia patients over the last two years of life, we conducted automatic topic modeling to capture the trends of various themes mentioned in care provider notes, including patients' physical function status, mental health, falls, nutrition and feeding, infections, hospital care, intensive care, end-of-life care, and family and social supports. Our research contributes to the adoption and evaluation of an unsupervised machine learning method using large amounts of retrospective free-text electronic health record data to discover and understand illness and health care trajectories.
This PDQ cancer information summary for health professionals provides comprehensive, peer-reviewed, evidence-based information about planning for end-of-life care in advanced cancer. It is intended as a resource to inform and assist clinicians who care for cancer patients. It does not provide formal guidelines or recommendations for making health care decisions. This summary is reviewed regularly and updated as necessary by the PDQ Supportive and Palliative Care Editorial Board, which is editorially independent of the National Cancer Institute (NCI). The summary reflects an independent review of the literature and does not represent a policy statement of NCI or the National Institutes of Health (NIH).
Nonmotor symptoms likely affect overall quality of life in Parkinson's disease (PD) as much as motor symptoms. Fast Fact #361 discussed the natural trajectory of PD. This Fast Fact will focus on management stratégies of common nonmotor symptoms in PD patients.
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OBJECTIVE: Shared decision making is essential for patients and their families when facing serious and life-threatening diseases. This study aimed to evaluate the impact of patient-centred and family-centred care meetings (PFCCM) on intensive measures and resource utilisation during end-of-life (EOL) hospitalisation among terminally ill patients.
DESIGN AND SETTING: A retrospective cross-sectional study using electronic medical records was conducted in a tertiary referral medical centre in Taiwan.
PARTICIPANTS: We identified 6843 deceased patients with terminal illness who either received or did not receive PFCCM during EOL hospitalisation between January 2013 and December 2015.
PRIMARY AND SECONDARY OUTCOME MEASURES: Patients who were transferred to the intensive care unit (ICU). Those who underwent invasive or non-invasive mechanical ventilation, tracheostomy, haemodialysis and surgical intervention during the final hospitalisation were determined by the use of intensive care measures; secondary measures were individual total and daily medical expenditures. A generalised estimating equation (GEE) model was used to compare the differences between the two groups. OR and beta coefficients (ß) with 95% CI were estimated.
RESULTS: This study identified 459 patients (6.7%) who received PFCCM during EOL hospitalisation. Multivariate analyses showed that patients who received PFCCM were less likely to have ICU admissions (OR 0.44, 95% CI 0.34 to 0.57), undergo surgical interventions (OR 0.74, 95% CI 0.58 to 0.95) and invasive mechanical ventilation (OR 0.50, 95% CI 0.38 to 0.66) during the final hospitalisation, after adjusting for patient demographics, clinical conditions and year of admission. Additionally, a significant decrease in daily medical expenditures was observed in PFCCM patients (ß -0.18, 95% CI -0.25 to -0.12) than in non-PFCCM patients.
CONCLUSIONS: Patient-physician discussion through PFCCM is associated with less intensive care utilisation and daily medical expenditure during EOL hospitalisation in terminally ill patients.
PURPOSE: The present study explores transition experiences during courses of incurable cancer from the perspective of bereaved spouses.
METHOD: Ten bereaved spouses participated in individual semi-structured interviews conducted in participants' private homes. The study takes a phenomenological-hermeneutic approach and data was analysed inspired by the French philosopher Paul Ricoeur's theory of interpretation.
FINDINGS: Two main themes were identified. The first one: "Being present when the life of their loved one is ending" consisted of three subthemes: "Challenged by suffering", "Transitions during the final days" and "Moving on in life". The second main theme: "Meaningful transitions in palliative care" consisted of two subthemes: "Changing direction towards palliative care" and "Transitions in palliative care".
CONCLUSION: Bereaved spouses experienced meaningful transitions when the life of their loved one was ending and related to receiving palliative care. Spouses were challenged by witnessing their loved one's suffering and experienced a deviation in the quality of professional palliative care offered in the system of healthcare.
CONTEXT: At the end of life, chronic obstructive pulmonary disease (COPD) and lung cancer (LC) patients exhibit similar symptoms; however, a large-scale study comparing end-of-life health care utilization between these two groups has not been conducted in East Asia.
OBJECTIVES: To explore and compare end-of-life resource use during the last 6 months before death between COPD and LC patients.
METHODS: Using data from the Taiwan National Health Insurance Research Database, we conducted a nationwide retrospective cohort study in COPD (n = 8,640) and LC (n = 3,377) patients who died between 1997 and 2013.
RESULTS: The COPD decedents were more likely to be admitted to intensive care units (ICUs) (57.59% vs 29.82%), to have longer ICU stays (17.59 vs 9.93 days), and to undergo intensive procedures than the LC decedents during their last 6 months; they were less likely to receive inpatient (3.32% vs 18.24%) or home-based palliative care (0.84% vs 8.17%) and supportive procedures than the LC decedents during their last 6 months. The average total medical cost during the last 6 months was approximately 18.42% higher for the COPD decedents than for the LC decedents.
CONCLUSION: Higher intensive health care resource use, including intensive procedure use, at the end of life suggests a focus on prolonging life in COPD patients; it also indicates an unmet demand for palliative care in these patients. Avoiding potentially inappropriate care and improving end-of-life care quality by providing palliative care to COPD patients are necessary.
OBJECTIVES: Palliative care is still often involved late in the disease trajectory. Recently, some studies have explored the barriers to early integration of PC in the hospital setting. Because palliative care home care (PHC) is organised differently compared with PC in a hospital setting, the identification of barriers to the early integration of PHC is needed.
METHODS: Six focus groups were held with PHC teams in Flanders, Belgium. Discussions were transcribed verbatim and analysed using constant comparative analysis.
RESULTS: Our findings confirm many barriers found in previous studies, such as the lack of financial resources and the perception of PC as terminal care. Oncologists' lack of knowledge about the content and role of PC is also confirmed. Furthermore, professional caregivers working in the home context are lacking information on oncology therapies necessary to provide optimal PC. A barrier for the home context is the discontinuity of care, as a result of a lack of communicational structure and a lack of central coordination.
CONCLUSION: The results contribute to a better understanding of the factors hindering the provision of PHC alongside oncology care. For the home context, transmural discontinuity of care seems to be an important additional barrier.
BACKGROUND: As modern medicine extends the life expectancy of patients with life-limiting illnesses and health system resource pressures intensify, palliative care physicians increasingly need to transfer stable patients from specialist palliative care units to nursing homes. The experience of palliative care physicians in decision-making and communicating with patients and families about the need for this transition is underexplored in the literature.
AIM: This study aimed to explore the experiences of and communication techniques used by palliative care physicians as they consider and discuss nursing home placements for their patients.
DESIGN: A qualitative approach using semi-structured interviews was used. Interviews were transcribed verbatim and analysed using thematic analysis.
SETTING/PARTICIPANTS: Purposive sampling was used to recruit 18 Australian palliative care physicians known for their interest or strength in communication skills across a range of palliative care settings.
RESULTS: Themes emerged from domains of physician experience (abandonment, systemic pressures, prognostic uncertainty, exacerbation of loss, and restoring resilience) and communication strategies (forecasting, checking in, provide context, and acknowledging grief).
CONCLUSION: This study highlights the tension Australian palliative care physicians experience when transferring palliative care patients to nursing home and the complexity involved in decision-making. Physicians identified several communication strategies to engage patients and families to ease the transition.
Patients with hematologic malignancies (HMs) often receive poor-quality end-of-life care. This study aimed to identify trends in end-of-life care among patients with HM in Brazil. We conducted a retrospective cohort study (2015-2018) of patients who died with HM, using electronic medical records linked to health insurance databank, to evaluate outcomes consistent with health-care resource utilization at the end of life. Among 111 patients with HM, in the last 30 days of life, we found high rates of emergency department visits (67%, n = 75), intensive care unit admissions (56%, n = 62), acute renal replacement therapy (10%, n = 11), blood transfusions (45%, n = 50), and medical imaging utilization (59%, n = 66). Patients received an average of 13 days of inpatient care and the majority of them died in the hospital (53%, n = 58). We also found that almost 40% of patients (38%, n = 42) used chemotherapy in the last 14 days of life. These patients were more likely to be male (64% vs 22%; P < .001), to receive blood transfusions (57% vs 38%; P = .05), and to die in the hospital (76% vs 39%; P = .009) than patients who did not use chemotherapy in the last 14 days of life. This study suggests that patients with HM have high rates of health-care utilization at the end of life in Brazil. Patients who used chemotherapy in the last 14 days of life were more likely to receive blood transfusions and to die in the hospital.
Patients with chronic illness are associated with high health-care utilization and this is exacerbated in the end of life, when health-care utilization and costs are highest. Complex Care Management (CCM) is a model of care developed to reduce health-care utilization, while improving patient outcomes. We aimed to examine the relationship between health-care utilization patterns and patient characteristics over time in a sample of older adults enrolled in CCM over the last 2 years of life. Generalized estimating equation models were used. The sample (n = 126) was 52% female with an average age of 85 years. Health-care utilization rose sharply in the last 3 months of life with at least one hospitalization for 67% of participants and an emergency department visit for 23% of participants. In the last 6 months of life, there was an average of 2.17 care transitions per participant. The odds of hospitalization increased by 27% with each time interval ( P < .001). Participants demonstrated 11% greater odds of having a hospitalization for each additional comorbidity ( P = .05). A primary diagnosis of heart failure or coronary artery disease was associated with 21% greater odds of hospitalization over time compared to other primary diagnoses ( P = .017). Females had 70% greater odds of an emergency department visit compared to males ( P = .046). For each additional year of life, the odds of an emergency department visit increased by about 7% ( P < .001). Findings suggest the need for further interventions targeting chronically ill older adults nearing end of life within CCM models.