Objective: The aim of this study was to assess the clinical, economic and personal impacts of the nurse practitioner-led Sydney Adventist Hospital Community Palliative Care Service (SanCPCS)
Methods: Parallel economic analysis of usual care was conducted prospectively with patients from the enhanced SanCPCS. A convenient retrospective sample from the initial service was used to determine the impact of the enhanced service on patient care. A time series survey was used with patients and carers from within the expanded service group in order to measure patient outcomes and values as they approached death. Results: Patients of the SanCPCS were less likely to die in hospital and had fewer hospital admissions. In addition, the service halved the estimated hospitalisation cost per patient, but the length of hospital stay was not affected by the service. The SanCPCS was more beneficial for women in terms of fewer hospital admissions and lower costs. Patients’ choices regarding place of care and death and what was ‘important’ to them changed over time. For instance, patients tended to prefer being at home as they approached death, and being pain free doubled in importance.
Conclusions: Nurse practitioner-led community palliative care services have the potential to result in significant economic and personal benefits for patients and their families in need of such care. What is known about the topic? National trends show an emphasis on community services with the aim of promoting and supporting the choice of dying at home, and this coincides with drives to reduce hospital costs and length of stay. Community-based palliative care services may offer substantial economic and clinical benefits. What does this paper add? The SanCPCS was the first nurse practitioner-led community-based palliative care service in Australia. The expansion of this service led to significantly fewer admissions and deaths in hospital, and halved the estimated hospitalisation cost per patient. What are implications for practitioners? Nurse practitioner-led models for care in the out-patient or community setting are a logical direction for palliative services through the engagement of specialised providers uniquely trained to support, nurture, guide and educate patients and their carers.
Quand le grand âge gagne une personne, quand elle se souvient plus des morts que des vivants, quand les capacités physiques et intellectuelles s’affaiblissent, la fin de la vie semble légitimement redoutable et inhumaine.
Nous rêvons tous d’avoir une belle vie. Et nous rêvons tous secrètement d’avoir une belle mort, épargnés d’une fin de vie marquée par la souffrance et le non-sens. Et pourtant, la fin de vie, quelle qu’en soit la forme, fait partie de la vie. Et à ce stade de son existence, l’être humain reste un vivant.
L’existence humaine est inscrite dans le temps. Toute vie se déploie entre un début et une fin. L’homme est fragile, quelques dizaines d’années après sa naissance et c’en est fini de lui. Tout ce que nous pouvons faire de notre existence sera toujours confronté à cette réalité qu’est la mort.
Et en même temps, aucun parcours ne se ressemble… Il y a autant de fins de vie qu’il y a d’individus. La manière de traverser les derniers moments avant de mourir est propre à chaque personne. Personne ne peut vivre la fin de la vie à la place d’un autre. Certes, on peut repérer des similitudes entre ce qui est vécu par les gens au terme de leur existence.
Background: Previous research suggested that there might be distinct patterns of functional decline in the last years of life depending on the condition leading to death, but the validity of these results and hence the explanatory value of the condition leading to death for late-life disability are uncertain.
Methods: A total of 636 decedents from a cohort of 754 community-living persons, 70+ years of age (Yale PEP Study) provided 33 700 monthly observations of self-/proxy-reported disability during the last 5 years of life. Nonlinear trajectories and short-term fluctuations of late-life disability by condition leading to death (cancer, organ failure, frailty, severe dementia, sudden death, other) were estimated with flexible mixed spline regression models.
Results: Disability trajectories at the end of life varied distinctively by the condition leading to death. Estimated disability trajectories among cancer deaths increased gradually up until about 6 months before death, after which a steep terminal decline set in. Among those with organ failure, frailty, and dementia, in contrast, disability was higher, increased more gradually, and there was no clear-cut terminal phase. Adding the condition leading to death to other known risk factors increased the amount of explained between-person variation in late-life disability from R2 = 0.35 to 0.49. Short-term fluctuations in disability were not specific for decedents with organ failure.
Conclusions: The condition leading to death is an important determinant of trajectories of late-life disability. These trajectories follow distinct patterns partially resembling a previously outlined theoretical typology.
BACKGROUND: Disparities in the utilization, expenditures, and quality of care by insurance types have been well documented. Such comparisons have yet to be investigated in end-of-life (EOL) settings in China, where public insurance covers over 95% of the Chinese population. This study examined the associations between health insurance and EOL care in the last six months of life: outpatient visits, emergency department (ED) visits, inpatient services, intensive care unit (ICU) admissions, expenditures, and place of death among the cancer patients.
METHODS: A total of 398 patients diagnosed with cancer who survived more than 6 months after diagnosis and died from July 2015 to June 2017 in urban Yichang, China, were included. Descriptive analysis and multivariate regression models were used to investigate the bivariate and independent associations, respectively, between health insurance with EOL healthcare utilization, expenditures and place of death.
RESULTS: Urban Employee Basic Medical Insurance (UEBMI) beneficiaries visited EDs more frequently than Urban Resident-based Basic Medical Insurance (URBMI) and New Rural Cooperative Medical Scheme (NRCMS) beneficiaries (marginal effects [95% Confidence Interval]: 2.15 [1.81-2.48] and 1.92 [1.59-2.26], respectively). NRCMS and UEBMI beneficiaries had more hospitalizations than URBMI beneficiaries (1.01 [0.38-1.64] and 0.71 [0.20-1.22], respectively). Compared to URBMI beneficiaries, NRCMS beneficiaries and UEBMI beneficiaries had ¥15,722 and ¥43,241 higher expenditures. Similarly, UEBMI beneficiaries were most likely to die in hospitals, followed by NRCMS (UEBMI vs. NRCMS: 0.23 [0.11-0.36]) and URBMI (UEBMI vs. URBMI: 0.67 [0.57-0.78]) beneficiaries.
CONCLUSIONS: The disproportionately lower utilization of EOL care among NRCMS and URBMI beneficiaries, compared to UEBMI beneficiaries, raised concerns regarding quality of EOL care and financial burdens of NRCMS and URBMI beneficiaries. Purposive hospice care intervention might be warranted to address EOL care for these beneficiaries in China.
BACKGROUND/OBJECTIVE: The Centers for Medicare & Medicaid Services (CMS) reimburses clinicians for advance care planning (ACP) discussions with Medicare patients. The objective of the study was to examine the association of CMS-billed ACP visits with end-of-life (EOL) healthcare utilization.
DESIGN: Patient-level analyses of claims for the random 20% Medicare fee-for-service (FFS) sample of decedents in 2017. To account for multiple comparisons, Bonferroni adjusted P value <.008 was considered statistically significant.
SETTING: Nationally representative sample of Medicare FFS beneficiaries.
PARTICIPANTS: A total of 237,989 Medicare FFS beneficiaries who died in 2017 and included those with and without a billed ACP visit during 2016–17.
INTERVENTION: The key exposure variable was receipt of first billed ACP (none, >1 month before death).
MEASUREMENTS: Six measures of EOL healthcare utilization or intensity (inpatient admission, emergency department [ED] visit, intensive care unit [ICU] stay, and expenditures within 30 days of death, in-hospital death, and first hospice within 3 days of death). Analyses was adjusted for age, race, sex, Charlson Comorbidity Index, expenditure by Dartmouth hospital referral region (high, medium, or low), and dual eligibility.
RESULTS: Overall, 6.3% (14,986) of the sample had at least one billed ACP visit. After multivariable adjustment, patients with an ACP visit experienced significantly less intensive EOL care on four of six measures: hospitalization (odds ratio [OR] = .77; 95% confidence interval [CI] = .74–.79), ED visit (OR = .77; 95% CI = .75–.80), or ICU stay (OR = .78; 95% CI = .74–.81) within a month of death; and they were less likely to die in the hospital (OR = .79; 95% CI = .76–.82). There were no differences in the rate of late hospice enrollment (OR = .97; 95% CI = .92–1.01; P = .119) or mean expenditures ($242.50; 95% CI = -$103.63 to $588.61; P = .169).
CONCLUSION: Billed ACP visits were relatively uncommon among Medicare FFS decedents, but their occurrence was associated with less intensive EOL utilization. Further research on the variables affecting hospice use and expenditures in the EOL period is recommended to understand the relative role of ACP.
Background: This retrospective cohort study aims to define the clinical findings and outcomes of every patient admitted to a district general hospital in Surrey with COVID-19 in March 2020, providing a snapshot of the first wave of infection in the UK. This study is the first detailed insight into the impact of frailty markers on patient outcomes and provides the infection rate among healthcare workers.
Methods: Data were obtained from medical records. Outcome measures were level of oxygen therapy, discharge and death. Patients were followed up until 21 April 2020.
Results: 108 patients were included. 34 (31%) died in hospital or were discharged for palliative care. 43% of patients aged over 65 died. The commonest comorbidities were hypertension (49; 45%) and diabetes (25; 23%). Patients who died were older (mean difference ±SEM, 13.76±3.12 years; p<0.0001) with a higher NEWS2 score (median 6, IQR 2.5–7.5 vs median 2, IQR 2–6) and worse renal function (median differences: urea 2.7 mmol/L, p<0.01; creatinine 4 µmol/L, p<0.05; eGFR 14 mL/min, p<0.05) on admission compared with survivors. Frailty markers were identified as risk factors for death. Clinical Frailty Scale (CFS) was higher in patients over 65 who died than in survivors (median 5, IQR 4–6 vs 3.5, IQR 2–5; p<0.01). Troponin and creatine kinase levels were higher in patients who died than in those who recovered (p<0.0001). Lymphopenia was common (median 0.8, IQR 0.6–1.2; p<0.005). Every patient with heart failure died (8). 26 (24%) were treated with continuous positive airway pressure (CPAP; median 3 days, IQR 2–7.3) and 9 (8%) were intubated (median 14 days, IQR 7–21). All patients who died after discharge (4; 6%) were care home residents. 276 of 699 hospital staff tested were positive for COVID-19.
Conclusions: This study identifies older patients with frailty as being particularly vulnerable and reinforces government policy to protect this group at all costs.
BACKGROUND: Managing transition of adolescents/young adults with life-limiting conditions from children's to adult services has become a global health and social care issue. Suboptimal transitions from children's to adult services can lead to measurable adverse outcomes. Interventions are emerging but there is little theory to guide service developments aimed at improving transition. The Transition to Adult Services for Young Adults with Life-limiting conditions (TAYSL study) included development of the TASYL Transition Theory, which describes eight interventions which can help prepare services and adolescents/young adults with life-limiting conditions for a successful transition. We aimed to assess the usefulness of the TASYL Transition Theory in a Canadian context to identify interventions, mechanisms and contextual factors associated with a successful transition from children's to adult services for adolescents/young adults; and to discover new theoretical elements that might modify the TASYL Theory.
METHODS: A cross-sectional survey focused on organisational approaches to transition was distributed to three organisations providing services to adolescents with life-limiting conditions in Toronto, Canada. This data was mapped to the TASYL Transition Theory to identify corresponding and new theoretical elements.
RESULTS: Invitations were sent to 411 potentially eligible health care professionals with 56 responses from across the three participating sites. The results validated three of the eight interventions: early start to the transition process; developing adolescent/young adult autonomy; and the role of parents/carers; with partial support for the remaining five. One new intervention was identified: effective communication between healthcare professionals and the adolescent/young adult and their parents/carers. There was also support for contextual factors including those related to staff knowledge and attitudes, and a lack of time to provide transition services centred on the adolescent/young adult. Some mechanisms were supported, including the adolescent/young adult gaining confidence in relationships with service providers and in decision-making.
CONCLUSIONS: The Transition Theory travelled well between Ireland and Toronto, indicating its potential to guide both service development and research in different contexts. Future research could include studies with adult service providers; qualitative work to further explicate mechanisms and contextual factors; and use the theory prospectively to develop and test new or modified interventions to improve transition.
Background: Difficulties in prognostication are common deterrents to palliative care among dementia patients. This study aimed to evaluate the effectiveness of palliative care in reducing the extent of utilization of medical services and the potential risk factors of mortality among dementia patients receiving palliative care.
Methods: We surveyed dementia patients involved in a palliative care program at a long-term care facility in Taipei, Taiwan. We enrolled 57 patients with advanced dementia (clinical dementia rating = 5 or functional assessment staging test stage 7b). We then compared the extent of their utilization of medical services before and after the provision of palliative care. Based on multivariable logistic regression, we identified potential risk factors before and after the provision of palliative care associated with 6-month mortality.
Results: The utilization of medical services was significantly lower among dementia patients after the provision of palliative care than before, including visits to medical departments (p < 0.001), medications prescribed (p < 0.001), frequency of hospitalization (p < 0.001), and visits to the emergency room (p < 0.001). Moreover, patients dying within 6 months after the palliative care program had a slightly but not significantly higher number of admissions before receiving hospice care (p = 0.058) on univariate analysis. However, no significant differences were observed in multivariate analysis.
Conclusions: The provision of palliative care to dementia patients reduces the extent of utilization of medical services. However, further studies with larger patient cohorts are required to stratify the potential risk factors of mortality in this patient group.
Importance: Although hospice use is increasing and patients in the US are increasingly dying at home, racial disparities in treatment intensity at the end of life, including hospice use, remain.
Objective: To examine differences between Black and White patients in end-of-life care in a population sample with well-characterized causes of death.
Design, Setting, and Participants: This study used data from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, an ongoing population-based cohort study with enrollment between January 25, 2003, and October 3, 2007, with linkage to Medicare claims data. Multivariable logistic regression models were used to examine racial and regional differences in end-of-life outcomes and in stroke mortality among 1212 participants with fee-for-service Medicare who died between January 1, 2013, and December 31, 2015, owing to natural causes and excluding sudden death, with oversampling of Black individuals and residents of Southeastern states in the United States. Initial analyses were conducted in March 2019, and final primary analyses were conducted in February 2020.
Main Outcomes and Measures: The primary outcomes of interest were hospice use of 3 or more days in the last 6 months of life derived from Medicare claims files. Other outcomes included multiple hospitalizations, emergency department visits, and use of intensive procedures in the last 6 months of life. Cause of death was adjudicated by an expert panel of clinicians using death certificates, proxy interviews, autopsy reports, and medical records.
Results: The sample consisted of 1212 participants (630 men [52.0%]; 378 Black individuals [31.2%]; mean [SD] age at death, 81.0 [8.6] years) of 2542 total deaths. Black decedents were less likely than White decedents to use hospice for 3 or more days (132 of 378 [34.9%] vs 385 of 834 [46.2%]; P < .001). After stratification by cause of death, substantial racial differences in treatment intensity and service use were found among persons who died of cardiovascular disease but not among patients who died of cancer. In analyses adjusted for cause of death (dementia, cancer, cardiovascular disease, and other) and clinical and demographic variables, Black decedents were significantly less likely to use 3 or more days of hospice (odds ratio [OR], 0.72; 95% CI, 0.54-0.96) and were more likely to have multiple emergency department visits (OR, 1.35; 95% CI, 1.01-1.80) and hospitalizations (OR, 1.39; 95% CI, 1.02-1.89) and undergo intensive treatment (OR, 1.94; 95% CI, 1.40-2.70) in the last 6 months of life compared with White decedents.
Conclusions and Relevance: Despite the increase in the use of hospice care in recent decades, racial disparities in the use of hospice remain, especially for noncancer deaths. More research is required to better understand racial disparities in access to and quality of end-of-life care.
Research suggests variation in how grief develops across time, and gender may account for some of this variation. However, gender differences in growth patterns of the newly codified ICD-11 prolonged grief disorder (PGD) are unknown. This study examined gender-specific variances in grief trajectories in a registry-sampled cohort of 857 spousal bereaved individuals (69.8% female). Participants completed self-report questionnaires of PGD symptoms at 2, 6, and 11 months post-loss. Using Growth Mixture Modeling, four PGD trajectories emerged: resilient characterized by low symptoms (64.4%), moderate-stable characterized by moderate symptoms (20.4%), recovery characterized by elevated symptoms showing a decrease over time (8.4%), and prolonged grief characterized by continuous elevated symptoms (6.8%). Similar proportions of men and women comprised the four trajectories. Gender influenced the parameter estimates of the prolonged grief trajectory as men evidenced more baseline symptoms (higher intercept) than women did and a decreasing symptom-level (negative slope), while women showed symptom-increase over time (positive slope). The prolonged grief trajectory captured the largest proportion of probable PGD cases in both genders. Low optimism and low mental health predicted membership in this class. Altogether, the absolute majority of both men and women followed a low-symptom resilient trajectory. While a comparable minority followed a high-symptom prolonged grief trajectory, men and women within this trajectory expressed varying symptom development. Men expressed prolonged grief as an acute, decreasing reaction, whereas women showed an adjourned, mounting grief reaction. This study suggests that gender may influence symptom development in highly distressed individuals across early bereavement.
OBJECTIVE: The objective of this study was to examine site of death and hospice use, identifying potential disparities among veterans dying in Department of Veterans Affairs (VA) Home Based Primary Care (VA-HBPC).
METHODS: Administrative data (2008, 2012, and 2016) were compiled using the VA Residential-History-File which tracks health care service location, daily. Outcomes were site of death [home, nursing home (NH), hospital, inpatient hospice]; and hospice use on the day of death. We compared VA-HBPC rates to rates of 2 decedent benchmarks: VA patients and 5% Traditional Medicare non-veteran males. Potential age, race, urban/rural residence and living alone status disparities in rates among veterans dying in VA-HBPC in 2016 were examined by multinomial logistic regression.
RESULTS: In 2016, 7796 veterans died in VA-HBPC of whom 62.1% died at home, 11.8% in NHs, 14.7% in hospitals and 11.4% in inpatient hospice. Hospice was provided to 60.9% of veterans dying at home and 63.9% of veterans dying in NH. Over the 2008-2012-2016 period, rates of VA-HBPC veterans who died at home and rates of home death with hospice increased and were higher than both benchmarks. Among VA-HBPC decedents, younger/older veterans were more/less likely to die at home and less/more likely to die with hospice. Race/ethnicity and urban/rural residence were unrelated to death at home but veterans living alone were less likely to die at home.
CONCLUSIONS: Results reflect VA-HBPC's primary goal of supporting its veterans at home, including at the end-of-life, surpassing other population benchmarks with some potential disparities remaining.
Background: Current policies recommend integrating home care and palliative care to enable patients to remain at home and avoid unnecessary hospital admission and emergency department (ED) visits. The Italian health care system had implemented integrated palliative home care (IHPC) services to guarantee a comprehensive, coordinated approach across different actors and to reduce potentially avoidable ED visits. This study aimed to analyze the trajectories of ED visit rates among patients receiving IHPC in the Italian healthcare system, as well as the association between socio-demographic, health supply, and clinical factors.
Methods: A pooled, cross-sectional, time series analysis was performed in a large Italian region in the period 2013–2017. Data were taken from two databases of the official Italian National Information System: Home Care Services and ED use. A clinical record is opened at the time a patient is enrolled in IHPC and closed after the last service is provided. Every such clinical record was considered as an IHPC event, and only ED visits that occurred during IHPC events were considered.
Results: The 20,611 patients enrolled in IHPC during the study period contributed 23,085 IHPC events; =1 ED visit occurred during 6046 of these events. Neoplasms accounted for 89% of IHPC events and for 91% of ED visits. Although there were different variations in ED visit rates during the study period, a slight decline was observed for all diseases, and this decline accelerated over time (b = - 0.18, p = 0.796, 95% confidence interval [CI] = - 1.59;1.22, b-squared = - 1.25, p < 0.001, 95% CI = -1.63;-0.86). There were no significant predictors among the socio-demographic factors (sex, age, presence of a non-family caregiver, cohabitant family members, distance from ED), health supply factors (proponent of IHPC) and clinical factors (prevalent disorder at IHPC entry, clinical symptoms).
Conclusion: Our results show that use of ED continues after enrollment in IHPC, but the trend of this use declines over time. As no significant predictive factors were identified, no specific interventions can be recommended on which the avoidable ED visits depend.
BACKGROUND: Shenzhen is a rapidly growing city in China with a population of over 11 million. The Hong Kong University-Shenzhen Hospital (HKU-SZH) was established in 2012 as a new model of publicly funded health care in mainland China. The clinical oncology center of the HKU-SZH was launched in 2013 which pledged to provide integrated palliative care for advanced cancer patients. This study aims to retrospectively analyze the quality of end-of-life care amongst patients with advanced cancer during their last hospitalization in the HKU-SZH.
METHODS: Consecutive patients with advanced solid cancer who passed away in the HKU-SZH from March 2013 to February 2016 were analyzed. Clinical information regarding cancer diagnosis, anticancer treatments, and the aggressiveness of the treatment during the last month of life was recorded. The discussions on the Do-Not-Resuscitate (DNR) order with family members were reviewed.
RESULTS: From March 2013 to February 2016, 441 patients with advanced solid cancer passed away in the HKU-SZH. A minority of them (9.3%, 41/441) received cytotoxic chemotherapy in the last month of life. Younger patients had high odds of receiving chemotherapy in their last month of life (OR 2.6, P=0.006). Those who received chemotherapy in their last month of life showed a trend of higher odds of admission to the intensive care unit (OR 2.94, P=0.08). The vast majority of family members / care providers (92.3%, 407/441) consented to the DNR order suggested by oncologists. The rate of DNR acceptance in this cohort was higher than previous reports from mainland China. Within HKU-SZH, the rate was higher in the oncology center than in other departments (OR 5.1, P<0.001). The use of chemotherapy in the last month of life did not associated with the acceptance of DNR (OR 1.3, P=0.23).
CONCLUSIONS: The integrated oncology service of the new public hospital HKU-SZH achieved a satisfactory level of end-of-life care in patients with advanced cancer. Further studies are warranted to improve the early integration of palliative care service and to investigate the impact of palliative care on costeffectiveness of oncology service.
In the UK and the Westernised countries, most people die aged 80+ from disabling, chronic and degenerative diseases, having spent several years in poor health. There is thus continuity between long-term care (LTC) and end of life care (EOLC) in old age, but this continuity is poorly understood within policy and almost nothing is known about what determines the modality and intensity of LTC provision in old age towards the end of life. Drawing on multinomial logistic regression analysis of the English Longitudinal Study of Ageing (ELSA), this paper evaluates how health and socio-demographic factors affect the relative probability of receiving care through one of five long-term care arrangements (LTCAs) from the time of need at age =50 to death; and assesses the consequences this has for the English LTC and EOLC policy and planning. The study reveals that hospices provide end-of-life LTC for cancer diagnoses and adults aged 50-64, while care homes provide open-ended and end-of-life LTC for non-cancer diagnoses, dementia, severe disability, and adults aged 80+. Further, the informal, formal, mixed and care home LTCAs reflect increasing levels of disability and ill-health, and decreasing levels of family support, with differences concerning education and gender. Finally, dementia and Parkinson's disease are the single strongest determinants of high formal LTC provision, and overall high care needs determine high formal LTC provision. Within the English context, the consequences of this are that: 1) Continued reliance on informal family care is not sustainable; 2) To provide free formal LTC to old adults with high care needs is appropriate; and 3) Hospices do not cater for the prevalent form of dying in old age while care homes do, being the de facto hospices for severely disabled, very old (80+) adults with dementia. Yet this is not represented in English EOLC policy and research.
BACKGROUND: Fibrotic interstitial lung diseases (f-ILDs) are often progressive and incurable. As patients experience significant symptoms and have a poor prognosis, early palliative care referral is recommended.
OBJECTIVE: To examine the care delivered to patients with f-ILD during the terminal hospital admission and the past 2 years of life.
METHODS: A retrospective audit was performed for consecutive patients who died from f-ILD at 2 Australian teaching hospitals between January 1, 2012, and December 31, 2016.
RESULTS: Of 67 patients, 44 (66%) had idiopathic pulmonary fibrosis. Median age was 78 years. Median respiratory function: forced expiratory volume in 1 second 69.0% predicted (interquartile range [IQR]: 58.0%-77.0%), forced vital capacity 64.0% predicted (IQR = 46.8%-74.3%), and diffusing capacity of carbon monoxide 36.0% predicted (IQR = 31.0%-44.0%). In the 2 years prior to the terminal admission, 38 (57%) patients reported severe breathlessness and 17 (25%) used opioids for symptom relief. Twenty-four (36%) patients received specialist palliative care (SPC) and 11 (16%) completed advance care planning. During the terminal admission, 10 (15%) patients were admitted directly under SPC. A further 33 (49%) patients were referred to SPC, on average 1 day prior to death. Sixty-three (94%) patients received opioids and 49 (73%) received benzodiazepines for symptom management. Median starting and final opioid doses were 10 and 23 mg oral morphine equivalent/24 hours, respectively. Opioids were commenced on average 2 (IQR 1-3) days prior to death.
CONCLUSIONS: Although most patients were identified as actively dying in the final admission, referral to SPC and use of palliative medications occurred late. Additionally, few patients accessed symptom palliation earlier in their illness.
Hospice social workers face many challenges in attempts to replicate or supplement the holistic support and unique services hospice provides for individuals discharged alive. This discontinuity in care can impact the types of supports needed by individuals and caregivers, which may or may not be accessible within their community. Patients and families who have access to community-based palliative care programs following a discharge generally tend to navigate the process with fewer challenges. This qualitative study (N = 24) explored both the challenges of the live discharge process and the opportunities within social work practice in the US. Results from this study emphasize the need for a framework to better approach a live discharge to ensure appropriate supports are accessible for all patients and caregivers. Specifically, results highlight both the concrete and psychosocial challenges in live discharges as a result of tension between current eligibility requirements and individual feelings and needs. Social workers also provided suggestions to improve the live discharge process, including attention to communication and preparation. This paper outlines specific challenges of live discharge from hospice, a framework for understanding presented challenges, and implications for policy and practice.
Objectives: We evaluated the trend of end-of-life healthcare utilization and life-sustaining interventions for older adults with dementia 3 to 4 years after the change in hospice policy.
Design: Population-based retrospective cohort study.
Setting and participants: we used the National Health Insurance Research database of enrolled patients =65 years of age diagnosed with dementia who died in 2010-2013 (n = 2062).
Methods: Aggressive treatments, including healthcare utilization and life-sustaining interventions, were recorded within 6 months of death. Aggressive healthcare utilization included =1 emergency department visits, =1 hospitalizations, >14 days of hospitalization, intensive care unit admission, and death in an acute care hospital. Life-sustaining interventions were enteral tube, artificial nutrition, blood transfusion, hemodialysis, invasive ventilation, and cardiopulmonary resuscitation.
Results: Compared with 2010 2012, 2013 rates significantly decreased for all measures (P < .001). Composite scores of healthcare utilization and life-sustaining treatments in 2013 were significantly lower than for 2010 2012, after controlling for confounding variables (both P < .001).
Conclusions and implications: Older patients with dementia had a trend of reduced healthcare utilization and fewer life-sustaining treatments near the end of life from 2010 to 2013 after a policy change.
Background: The association between palliative care and life-sustaining treatment following emergency department (ED) resuscitation is unclear. This study aims to analyze the usage of palliative care and life-sustaining treatments among ED triage level I resuscitation patients based on a nationally representative sample of patients in Taiwan.
Methods: A matched-pair retrospective cohort study was conducted to examine the association between palliative care and outcome variables using multivariate logistic regression and Kaplan–Meier survival analyses. Between 2009 and 2013, 336 ED triage level I resuscitation patients received palliative care services (palliative care group) under a universal health insurance scheme. Retrospective cohort matching was performed with those who received standard care at a ratio of 1:4 (usual care group). Outcome variables included the number of visits to emergency and outpatient departments, hospitalization duration, total medical expenses, utilization of life-sustaining treatments, and duration of survival following ED triage level I resuscitation.
Results: The mean survival duration following level I resuscitation was less than 1 year. Palliative care was administered to 15% of the resuscitation cohort. The palliative care group received significantly less life-sustaining treatment than did the usual care group.
Conclusion: Among patients who underwent level I resuscitation, palliative care was inversely correlated with the scope of life-sustaining treatments. Furthermore, triage level I resuscitation status may present a possible new field for starting palliative care intervention and reducing low-value care.
Context: Palliative care consultation before left ventricular assist device (LVAD) surgery (PreVAD) has been recommended, but its impact on goal-concordant care is unknown.
Objectives: To describe the association between patients' unique unacceptable condition articulated during PreVAD with the actual care provided at the end of life.
Methods: Among 308 patients who had PreVAD between 2014 and 2019, 72 patients died before December 31, 2019. Based on the answers to the question, “Is there any condition you would find unacceptable?” patients were divided into ARTICULATE (those who could articulate their unacceptable condition clearly, n = 58) and non-ARTICULATE (those who could not, n = 14). Circumstances at death and end-of-life care were compared between groups.
Results: Mean age at death was 63.2 years (SD ±13.1), 56 patients (77.8%) were males, and median duration of LVAD was 167.5 days (interquartile range 682). ARTICULATE patients died less frequently in the intensive care unit than non-ARTICULATE patients (33 patients, 57.9% vs. 13 patients, 92.9%; P = 0.014) and had ethics consultation less frequently (four patients, 6.9% vs. five patients, 35.7%; P = 0.011). Frequency of LVAD withdrawal was similar in both groups. Among ARTICULATE cohort, the unacceptable condition articulated in PreVAD did not seem to influence decisions at the end of life.
Conclusion: Patients who articulated their unacceptable condition clearly before LVAD surgery had less frequent ethics consultations and received less intensive care at the end of life, but it did not seem to affect the decision of LVAD withdrawal. It may be more important to engage in discussions around their unacceptable conditions, rather than the specific condition articulated. The question of an unacceptable condition should be part of any routine palliative care consultation before LVAD surgery.
Background: Palliative care supports quality of life, symptom control, and goal setting in heart failure (HF) patients. Unlike hospice, palliative care does not restrict life-prolonging therapy. This study examined the association between palliative care during hospitalization for HF on the subsequent transitions and procedures.
Methods and Results: Veterans admitted to hospitals with HF from 2010 to 2015 were randomly selected for the Veterans Administration External Peer Review Program. Variables pertaining to demographic, clinical, laboratory, and usage were captured from Veterans Administration electronic records. Patients receiving hospice services before admission were excluded. Patients who received palliative care were propensity matched to those who did not. The primary outcomes were whether the patient experienced transitions or procedures in the 6 months after admission. Transitions included multiple readmissions (=2) or intensive care admissions and procedures included mechanical ventilation, pacemaker implantation, or defibrillator implantation. Among 57 182 hospitalized HF patients, 1431 received palliative care, and were well matched to 1431 without (standardized mean differences = ±0.05 on all matched variables). Palliative care was associated with significantly fewer multiple rehospitalizations (30.9% versus 40.3%, P<0.001), mechanical ventilation (2.8% versus 5.4%, P=0.004), and defibrillator implantation (2.1% versus 3.6%, P=0.01). After adjustment for facility fixed effects, palliative care consultation was associated with a significantly reduced hazard of multiple readmissions (adjusted hazard ratio=0.73, 95% CI, 0.64–0.84) and mechanical ventilation (adjusted hazard ratio=0.76, 95% CI, 0.67–0.87).
Conclusions: palliative care during HF admissions was associated with fewer readmissions and less mechanical ventilation. When available, engagement of HF patients and caregivers in palliative care for symptom control, quality of life, and goals of care discussions may be associated with reduced rehospitalizations and mechanical ventilation.