PURPOSE: To determine whether the type of delivery system is associated with intensity of care at the end of life for Medicare beneficiaries with cancer.
PATIENTS AND METHODS: We used SEER registry data linked with Medicare claims to evaluate intensity of end-of-life care for patients who died of one of ten common cancers diagnosed from 2009 through 2014. Patients were categorized as receiving the majority of their care in an integrated delivery system, designated cancer center, health system that was both integrated and a certified cancer center, or health system that was neither. We evaluated adherence to seven nationally endorsed end-of-life quality measures using generalized linear models across four delivery system types.
RESULTS: Among 100,549 beneficiaries who died of cancer during the study interval, we identified only modest differences in intensity of end-of-life care across delivery system structures. Health systems with no cancer center or integrated affiliation demonstrated higher proportions of patients with multiple hospitalizations in the last 30 days of life (11.3%), death in an acute care setting (25.9%), and lack of hospice use in the last year of life (31.6%; all P < .001). Patients enrolled in hospice had lower intensity care across multiple end-of-life quality measures.
CONCLUSION: Intensity of care at the end of life for patients with cancer was higher at delivery systems with no integration or cancer focus. Maximal supportive care delivered through hospice may be one avenue to reduce high-intensity care at the end of life and may impact quality of care for patients dying from cancer.
BACKGROUND: Increasing life expectancy for people with an intellectual disability (ID) is resulting in more persons with cancer and a greater need for end-of-life (EoL) care. There is a need for knowledge of health care utilisation over the last year of life to plan for resources that support a high quality of care for cancer patients with ID. Therefore, the aims of the study were to compare (1) health care utilisation during the last year of life among cancer patients with ID and cancer patients without ID and (2) the place of death in these two groups.
METHODS: The populations were defined using national data from the period 2002-2015, one with ID (n = 15 319) and one matched 5:1 from the general population (n = 72 511). Cancer was identified in the Cause of Death Register, resulting in two study cohorts with 775 cancer patients with ID (ID cohort) and 2968 cancer patients from the general population (gPop cohort).
RESULTS: Cancer patients with ID were less likely than those without ID to have at least one visit in specialist inpatient (relative risk 0.90, 95% confidence interval 0.87-0.93) and outpatient (0.88, 0.85-0.91) health care, during their last year of life. Those with ID were more likely to have no or fewer return visits than the patients in the gPop cohort (5 vs. 11, P < 0.001), also when stratifying on sex and median age at death. Most cancer patients with ID died in group homes or in their own homes and fewer in hospital (31%) as compared with cancer patients in the gPop cohort (55%, 0.57, 0.51-0.64).
CONCLUSIONS: Older cancer patients with ID were less likely to be assessed or treated by a specialist. This may suggest that people with ID have unaddressed or untreated distressing symptoms, which strongly contributes to a decreased quality of EoL care and a poor quality of life. There is a need to acquire further knowledge of the EoL care and to focus on adapting and evaluating quality indicators for older cancer patients with ID.
Paediatric palliative care (PPC) is regarded as standard care for children and young people (CYP) with life-limiting conditions (LLCs). There is a lack of knowledge about the rate of CYP with LLCs, hampering the development of PPC. This retrospective study aimed to examine population-based statistics of South Korean CYP with LLCs and the pattern of healthcare use and costs in their last year of life, analysing the National Health Insurance Service claims database for the period 2013–2015. In 2015, the number of CYP (=24 years old) living with LLCs was 133,177, with those who died accounting for 1,032. Prevalence of LLC and mortality rate per 100,000 were highest among under-1-age group (2,151.7 and 82.7, respectively). In the last year of life, 91.8% of deceased CYP with LLCs were hospitalized at least once and the average length of stay was 101.2 days (standard deviation = 104.1). Deceased CYP with cancer spent more on healthcare than non-cancer CYP (64,266 vs. 40,694 US dollar, p < 0.001). The average relevance index for CYP death related to LLCs was 55.9%. Our results provide baseline information on healthcare utilization and expenditure among CYP with LLCs, which is crucial data for designing evidence-based PPC policy and services.
BACKGROUND: Hospice care has a positive effect on medical costs. The correlation between survival time after receiving hospice care and medical costs has not been previously investigated in the literature on Taiwan. This study aimed to compare the differences in medical costs between traditional care and hospice care among end-of-life patients with cancer.
METHODS: Data from Taiwan's National Health Insurance program on all patients who had passed away between 2010 and 2013 were used. Those whose year of death was between 2010 and 2013 were defined as end-of-life patients. The patients were divided into two groups: traditional care and hospice care. We then analyzed the differences in end-of-life medical cost between the two groups.
RESULTS: From 2010 to 2013, the proportion of patients receiving hospice care significantly increased from 22.2% to 41.30%. In the hospice group, compared with the traditional group, the proportions of hospital stays over 14 days and deaths in a hospital were significantly higher, but the proportions of outpatient clinic visits; emergency room admissions; intensive care unit admissions; use of ventilator; use of cardiopulmonary resuscitation; and use of hemodialysis, surgery, and chemotherapy were significantly lower. Total medical costs were significantly lower. A greater number of days of survival for end-of-life patients when receiving hospice care results in higher saved medical costs.
CONCLUSION: Hospice care can effectively save a large amount of end-of-life medical costs, and more medical costs are saved when patients are referred to hospice care earlier.
OBJECTIVES: Dementia is a progressive incurable life-limiting illness. Previous research suggests end-of-life care for people with dementia should have a symptomatic focus with an effort to avoid burdensome interventions that would not improve quality of life. This study aims to assess the appropriateness of end-of-life care in people who died with dementia in Belgium and to establish relative performance standards by measuring validated population-level quality indicators.
DESIGN: We conducted a retrospective observational study.
SETTING AND PARTICIPANTS: We included all persons deceased with dementia in 2015 in Belgium. Data from 8 administratively collected population-level databases was linked.
MEASURES: We used a validated set of 28 quality indicators for end-of-life dementia care. We compared quality indicator scores across 14 healthcare regions to establish relative benchmarks.
RESULTS: In Belgium in 2015, 10,629 people died with dementia. For indicators of appropriate end-of-life care, people who died with dementia had on average 1.83 contacts with their family physician in the last week before death, whereas 68.4% died at home or in their nursing home of residence. For indicators of inappropriate end-of-life care, 32.4% were admitted to the hospital and 36.3% underwent diagnostic testing in the last 30 days before death, whereas 25.1% died in the hospital. In the last 30 days, emergency department admission varied between 19% and 31%, dispensing of gastric protectors between 18% and 42%, and antihypertensives between 40% and 53% between healthcare regions, with at least 25% of health regions below 46%.
CONCLUSIONS AND IMPLICATIONS: Our study found indications of appropriate as well as inappropriate end-of-life care in people with dementia, including high rates of family physician contact, as well as high percentages of diagnostic testing, and emergency department and hospital admissions. We also found high risk-adjusted variation for multiple quality indicators, indicating opportunity for quality improvement in end-of-life dementia care.
In this issue of JAMA, Lee and colleagues examine the association between Physician Orders for Life-Sustaining Treatment (POLST), which involve portable medical orders that document treatment limitations for out-of-hospital emergency care and for limiting overtreatment at the end of life. The authors studied adults with chronic life-limiting illnesses who were hospitalized within the last 6 months of life and who had completed a POLST before their last inpatient admission. Among 1818 patients enrolled, 656 (36%) had POLST orders for “full treatment” and 1162 had orders for either “limited additional interventions” (761 [42%]) or “comfort measures only” (401 [22%]). Among the combined latter 2 groups, 472 (41%) were admitted to the intensive care unit (ICU), 436 (38%) received POLST-discordant intensive care, and 204 (18%) received POLST-discordant life-sustaining treatments, defined as mechanical ventilation, vasoactive infusions, new renal replacement therapy, or cardiopulmonary resuscitation. Patients with cancer or dementia were less likely to receive POLST-discordant intensive care, whereas patients hospitalized for traumatic injuries were more likely to receive POLST-discordant intensive care. These results are sobering.
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Importance: Patients with chronic illness frequently use Physician Orders for Life-Sustaining Treatment (POLST) to document treatment limitations.
Objectives: To evaluate the association between POLST order for medical interventions and intensive care unit (ICU) admission for patients hospitalized near the end of life.
Design, Setting, and Participants: Retrospective cohort study of patients with POLSTs and with chronic illness who died between January 1, 2010, and December 31, 2017, and were hospitalized 6 months or less before death in a 2-hospital academic health care system.
Exposures: POLST order for medical interventions (“comfort measures only” vs “limited additional interventions” vs “full treatment”), age, race/ethnicity, education, days from POLST completion to admission, histories of cancer or dementia, and admission for traumatic injury.
Main Outcomes and Measures: The primary outcome was the association between POLST order and ICU admission during the last hospitalization of life; the secondary outcome was receipt of a composite of 4 life-sustaining treatments: mechanical ventilation, vasopressors, dialysis, and cardiopulmonary resuscitation. For evaluating factors associated with POLST-discordant care, the outcome was ICU admission contrary to POLST order for medical interventions during the last hospitalization of life.
Results: Among 1818 decedents (mean age, 70.8 [SD, 14.7] years; 41% women), 401 (22%) had POLST orders for comfort measures only, 761 (42%) had orders for limited additional interventions, and 656 (36%) had orders for full treatment. ICU admissions occurred in 31% (95% CI, 26%-35%) of patients with comfort-only orders, 46% (95% CI, 42%-49%) with limited-interventions orders, and 62% (95% CI, 58%-66%) with full-treatment orders. One or more life-sustaining treatments were delivered to 14% (95% CI, 11%-17%) of patients with comfort-only orders and to 20% (95% CI, 17%-23%) of patients with limited-interventions orders. Compared with patients with full-treatment POLSTs, those with comfort-only and limited-interventions orders were significantly less likely to receive ICU admission (comfort only: 123/401 [31%] vs 406/656 [62%], aRR, 0.53 [95% CI, 0.45-0.62]; limited interventions: 349/761 [46%] vs 406/656 [62%], aRR, 0.79 [95% CI, 0.71-0.87]). Across patients with comfort-only and limited-interventions POLSTs, 38% (95% CI, 35%-40%) received POLST-discordant care. Patients with cancer were significantly less likely to receive POLST-discordant care than those without cancer (comfort only: 41/181 [23%] vs 80/220 [36%], aRR, 0.60 [95% CI, 0.43-0.85]; limited interventions: 100/321 [31%] vs 215/440 [49%], aRR, 0.63 [95% CI, 0.51-0.78]). Patients with dementia and comfort-only orders were significantly less likely to receive POLST-discordant care than those without dementia (23/111 [21%] vs 98/290 [34%], aRR, 0.44 [95% CI, 0.29-0.67]). Patients admitted for traumatic injury were significantly more likely to receive POLST-discordant care (comfort only: 29/64 [45%] vs 92/337 [27%], aRR, 1.52 [95% CI, 1.08-2.14]; limited interventions: 51/91 [56%] vs 264/670 [39%], aRR, 1.36 [95% CI, 1.09-1.68]). In patients with limited-interventions orders, older age was significantly associated with less POLST-discordant care (aRR, 0.93 per 10 years [95% CI, 0.88-1.00]).
Conclusions and Relevance: Among patients with POLSTs and with chronic life-limiting illness who were hospitalized within 6 months of death, treatment-limiting POLSTs were significantly associated with lower rates of ICU admission compared with full-treatment POLSTs. However, 38% of patients with treatment-limiting POLSTs received intensive care that was potentially discordant with their POLST.
Cet ouvrage est le journal de bord d'une mère de 32 ans atteinte d'un cancer. Les entrées, qui s'étalent d'octobre 2017 à septembre 2018, relatent les bons et les mauvais jours ainsi que les réflexions de l'auteure sur l'impact familial, financier et social de la maladie.
BACKGROUND: Physician Orders for Life-Sustaining Treatment (POLST) forms are portable medical orders documenting patient treatment preferences in an acute health decline. It is unclear how these forms are used in the management of elderly trauma patients.
METHODS: Patients 65 years and older presenting to a Level I trauma center were identified between 2012 and 2017. Hospital trauma registry and medical records were used to identify a preinjury POLST and its acknowledgment by providers within 24 hours of arrival. A 1:1 propensity score matched sample was used to evaluate clinical outcomes based on the presence of a POLST limiting interventions with p less than 0.05 deemed significant.
RESULTS: There were 3,342 elderly trauma patients identified. One hundred ninety-two (6%) had a POLST identified by the institutional trauma registry dated before the injury. Do not attempt resuscitation (DNR) was listed in 154 patients (80%), and 79% desired to avoid the intensive care unit (ICU) with limited (54%) or comfort measures only (CMO, 25%). One hundred seven (76%) of admitted POLST DNR patients had a DNR code status for the majority of their admission. 59 (58%) of the limited and 29 (60%) of the comfort measures only patients were admitted to the ICU. Acknowledgment of a preinjury POLST or code status was explicitly documented in 110 cases (57%). Propensity score analysis yielded a comparison sample of 288 patients. In the matched comparison, an acknowledged POLST with limitations was associated with a shorter ICU stay (1.7 vs. 2.8 days, p = 0.008) but there was no difference in ICU admission (58% vs. 61%, p = 0.69), total length of stay (3.8 days vs. 4.8 days, p = 0.08), or in-hospital mortality (13% vs. 8%, p = 0.2).
CONCLUSION: Limited provider acknowledgment of preinjury medical directives necessitates protocol development for the management of frail elderly trauma patients. When acknowledged, patients with a POLST limiting interventions had fewer ICU days without increased in-hospital mortality compared with similarly injured elderly patients.
LEVEL OF EVIDENCE: Care Management, level IV.
OBJECTIVE: This study captured the end-of-life care experiences across various settings from bereaved caregivers of individuals who died in residential hospice.
METHODS: A retrospective, observational design using the CaregiverVoice survey with bereaved caregivers of patients in 22 hospices in Ontario, Canada. The survey assessed various dimensions of the patient's care experiences across multiple care settings in the last 3 months of life.
RESULTS: A total of 1153 caregivers responded to the survey (44% response rate). In addition to hospice care, caregivers reported that 74% of patients received home care, 61% had a hospitalization, 42% received care at a cancer center, and 10% lived in a nursing home. Most caregivers (84%-89%) rated the addressing of each support domain (relief of physical pain, relief of other symptoms, spiritual support, and emotional support) by hospice as either "excellent" or "very good." These proportions were less favorable for home care (40%-47%), cancer center (46%-54%), and hospital (37%-48%). Significantly, better experiences were reported for the last week of life where hospice was considered the main setting of care, opposed to other settings ( P < .0001 across domains). Overall, across settings pain management tended to be the highest-rated domain and spiritual support the lowest.
CONCLUSION: This is one of few quantitative examinations of the care experience of patients who accessed multiple care settings in the last months of life and died in a specialized setting such as residential hospice. These findings emphasize the importance of replicating the hospice approach in institutional and home settings, including greater attention to emotional and spiritual dimensions of care.
BACKGROUND: Early palliative care addresses biopsychosocial needs for people living with HIV in an outpatient setting. We sought to describe patients referred to a palliative care program and compare the medical outcomes of emergency department (ED) visits, hospitalizations, primary care visits, and viral load suppression among patients enrolled in the program, to patients who did not enroll (no-show group).
SETTING: We completed a retrospective cohort study at an urban, academically- affiliated HIV primary care clinic.
METHODS: Data were collected from electronic medical records. Descriptive statistics characterized patient demographics at baseline, comorbidities, and reasons for referral to palliative care. Viral load suppression, rates of ED visits, hospitalizations, primary care visits, and retention in care were compared between the palliative and no-show groups.
RESULTS: The most common reasons for referral were chronic pain management and medication/appointment adherence. Median percent of viral load measurements suppressed increased over time, but did not differ statistically between groups (Pre: 28.6% and 15.5%, post: 70.8% and 50.0%, palliative and no-show groups respectively). Median rates of ED visits and hospitalizations were low and were not impacted by palliative care. Rates of primary care visit attendance remained stable in the palliative group (4.6/year) but declined in the no-show group (3.5/year), p<0.05. Retention in care improved significantly following the palliative intervention (Palliative: 85.4% to 96.1%, No-show: 94.4% to 82.5%), and at high and low palliative engagement, suggesting a threshold effect of the intervention.
CONCLUSION: Outpatient early palliative care is a promising intervention that might impact retention in HIV care.
Background: We calculated the performance of National Cancer Institute (NCI)/National Comprehensive Cancer Network (NCCN) cancer centers’ end-of-life (EOL) quality metrics among minority and white decedents to explore center-attributable sources of EOL disparities.
Methods: We conducted a retrospective cohort study of Medicare beneficiaries with poor-prognosis cancers who died between April 1, 2016 and December 31, 2016 and had any inpatient services in the last 6 months of life. We attributed patients’ EOL treatment to the center at which they received the preponderance of EOL inpatient services and calculated eight risk-adjusted metrics of EOL quality (hospice admission =3 days before death; chemotherapy last 14 days of life; =2 emergency department (ED) visits; intensive care unit (ICU) admission; or life-sustaining treatment last 30 days; hospice referral; palliative care; advance care planning last 6 months). We compared performance between patients across and within centers.
Results: Among 126,434 patients, 10,119 received treatment at one of 54 NCI/NCCN centers. In aggregate, performance was worse among minorities for ED visits (10.3% vs 7.4%, P < .01), ICU admissions (32.9% vs 30.4%, P = .03), no hospice referral (39.5% vs 37.0%, P = .03), and life-sustaining treatment (19.4% vs 16.2%, P < .01). Despite high within-center correlation for minority and white metrics (0.61-0.79; P < .01), five metrics demonstrated worse performance as the concentration of minorities increased: ED visits (P = .03), ICU admission (P < .01), no hospice referral (P < .01), and life-sustaining treatments (P < .01).
Conclusion: EOL quality metrics vary across NCI/NCCN centers. Within center, care was similar for minority and white patients. Minority-serving centers had worse performance on many metrics.
Importance: The use of intensive care at the end of life continues to be common. Although the provision of palliative care has been advocated as a way to mitigate the use of high-intensity care, it is unknown whether implementation of hospital-based palliative care services is associated with reduced use of intensive care at the end of life.
Objective: To determine whether implementation of hospital-based palliative care services is associated with decreased intensive care unit (ICU) use during terminal hospitalizations.
Design, Setting, and Participants: This cohort study included 51 hospitals in New York State that either did or did not implement a palliative care program between 2008 and 2014. Hospitals that consistently had a palliative care program during the study period were excluded. Participants were adult patients who died during hospitalization. Data analysis was performed between January 2018 and July 2019.
Exposure: Implementation of a palliative care program.
Main Outcomes and Measures: The primary outcome was ICU use. A difference-in-differences analysis was performed using multilevel regression to assess the association between implementing a palliative care program and ICU use during terminal hospitalizations while adjusting for patient and hospital characteristics and time trends.
Results: During the study period, 73 370 patients (mean [SD] age, 76.5 [14.1] years; 38 467 [52.4%] women) died during hospitalization, of whom 37 628 (51.3%) received care in hospitals that implemented palliative care services and 35 742 (48.7%) received care in a hospital without palliative care implementation. Patients who received care in hospitals after implementation of palliative care services were less likely to receive intensive care than patients admitted to the same hospitals before implementation (49.3% vs 52.8%; difference 3.5%; 95% CI, 2.5%-4.5%; P < .001). Compared with hospitals that never had a palliative care program, the implementation of palliative care was associated with a 10% reduction in ICU use during terminal hospitalizations (adjusted relative risk, 0.90; 95% CI, 0.85-0.95; P < .001).
onclusions and Relevance: The implementation of hospital-based palliative care services in New York State was associated with a modest reduction in ICU use during terminal hospitalizations.
Aim: To examine paediatric deaths following withdrawal or withholding of medical treatment (WWMT) from a hospital-wide perspective and identify changes over a 10 year period.
Methods: A retrospective review of medical records was conducted for all paediatric inpatient deaths at the Royal Children's Hospital, Melbourne from April 2015 to April 2016, and results were compared to 2007 data from our centre. 2 tests were used for comparisons.
Results: A total of 101 deaths occurred in the inpatient setting in 2015–2016. Most deaths followed WWMT (88/101, 87%) and occurred in children with pre-existing chronic conditions (85/101, 85%). There was a shift to earlier discussions with parents regarding WWMT compared to 10 years prior. Cases where discussions began prior to the last admission increased from 4 to 19% (P = 0.004). There was increased paediatric palliative care (PPC) involvement (10 vs. 37%, P < 0.001), and a slightly greater proportion of children died outside of intensive care (16 vs. 22%, P = 0.25). In 2015–2016, subgroup analysis showed that children who died as inpatients but outside of intensive care were 76% more likely to have PPC involved than those who died in intensive care (P < 0.001). Their families were 51% more likely to have discussed WWMT with medical staff before the last admission (P < 0.001).
Conclusions: The last decade has seen an increase in PPC involvement and advance discussions around WWMT at our centre. Both of these are associated with death outside of intensive care.
Background: Care transitions from the hospital to hospice are a difficult time, and gaps during this transitions could cause poor care experiences and outcomes. However, little is known about what gaps exist in the hospital-to-hospice transition.
Objectives: to understand the process of hospital-to-hospice transition and identify common gaps in the transition that result in unsafe or poor patient and family caregiver experiences.
Design: We conducted a qualitative descriptive study using semistructured interviews with health care workers who are directly involved in hospital-to-hospice transitions. Participants were asked to describe the common practice of discharging patients to hospice or admitting patients from a hospital, and share their observations about hospital-to-hospice transition gaps.
Setting/Subjects: Fifteen health care workers from three hospitals and three hospice programs in Portland, Oregon.
Measurements: All interviews were audio recorded and analyzed using qualitative descriptive methods to describe current practices and identify gaps in hospital-to-hospice transitions.
Results: Three areas of gaps in hospital-to-hospice transitions were identified: (1) low literacy about hospice care; (2) changes in medications; and (3) hand-off information related to daily care. Specific concerns included hospital providers giving inaccurate descriptions of hospice; discharge orders not including comfort medications for the transition and inadequate prescriptions to manage medications at home; and lack of information about daily care hindering smooth transition and continuity of care.
Conclusion: Our findings identify gaps and suggest opportunities to improve hospital-to-hospice transitions that will serve as the basis for future interventions to design safe and high-quality hospital-to-hospice care transitions.
Background: End-of-life (EOL) communication is crucial, particularly for cancer patients. While advanced care planning is still uncommon, we sought to investigate its impact on care intensity in case of organ failure in lung cancer patients.
Methods: We prospectively included consecutive lung cancer patients hospitalised at the Grenoble University Hospital, France, between January 1, 2014 and March 31, 2016. Patients could be admitted several times and benefited from advanced care planning based on three care intensities: intensive care, maximal medical care, and exclusive palliative care. Patients’ wishes were addressed.
Results: Data of 739 hospitalisations concerning 482 patients were studied. During the three first admissions, 173 (25%) patients developed organ failure, with intensive care proposed to 56 (32%), maximal medical care to 104 (60%), and exclusive palliative care to 13 (8%). Median time to organ failure was 9 days [IQR 25%-75%: 3-13]. All patients benefited from care intensity that was either equal to or lower than the care proposed. Specific wishes were recorded for 158 (91%) patients, with a discussion about EOL conditions held in 116 (73%).
Conclusions: In case of organ failure, advanced care planning helps provide reasonable care intensity. The role of the patient’s wishes as to the proposed care must be further investigated.
Clinical Trial Registration: The study was registered at www.ClinicalTrials.gov with the identifier NCT02852629.
PURPOSE: Patients with hematological malignancies (HM) have more unpredictable disease trajectories compared to patients with advanced solid tumors (STs) and miss opportunities for a palliative care approach. They often undergo intensive disease-directed treatments until the end of life with frequent emergency department (ED) visits and in-hospital deaths. Insight into end-of-life trajectories and quality of end-of-life care can support arranging appropriate care according to patients' wishes.
METHOD: Mortality follow-back study to compare of end-of-life trajectories of HM and ST patients who died <3 months after their ED visit. Five indicators based on Earle et al. for quality of end-of-life care were assessed: intensive anticancer treatment <3 months, ED visits <6 months, in-hospital death, death in the intensive care unit (ICU), and in-hospice death.
RESULTS: We included 78 HM patients and 420 ST patients, with a median age of 63 years; 35% had Eastern Cooperative Oncology Group performance status 3-4. At the ED, common symptoms were dyspnea (22%), pain (18%), and fever (11%). After ED visit, 91% of HM patients versus 76% of ST patients were hospitalized (P = .001). Median survival was 17 days (95% confidence interval [CI]: 15-19): 15 days in HM patients (95% CI: 10-20) versus 18 days in ST patients (95% CI: 15-21), P = .028. Compared to ST patients, HM patients more often died in hospital (68% vs 30%, P < .0001) and in the ICU or ED (30% vs 3%, P < .0001).
CONCLUSION: Because end-of-life care is more aggressive in HM patients compared to ST patients, a proactive integrated care approach with early start of palliative care alongside curative care is warranted. Timely discussions with patients and family about advance care planning and end-of-life choices can avoid inappropriate care at the end of life.
"I don’t think she’ll ever make it home again.”
I stood at the nursing station with two staff nurses from our medical ward. The patient, a woman with metastatic cancer and acute respiratory failure, had just arrived by a medical helicopter from an out-of-state community hospital. At the previous hospital, days had stretched into weeks, and she was not getting better. Limited documentation told us that the pa-tient’s family sought further options at our facility. Beyond that, we knew little about the conversations that had transpired. The transfer had been arranged and off she went, arriving on our helipad in worsening respiratory distress, now needing a high-er level of supplemental oxygen and teetering on the edge of endotracheal intubation. Above all, she was extremely uncom-fortable from shortness of breath, and an urgent palliative care consult was placed a few hours after she touched down.
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Importance: Overall, 1 of 5 decedents in the United States is admitted to an intensive care unit (ICU) before death.
Objective: To describe structures, processes, and variability of end-of-life care delivered in ICUs in the United States.
Design, Setting, and Participants: This nationwide cohort study used data on 16 945 adults who were cared for in ICUs that participated in the 68-unit ICU Liberation Collaborative quality improvement project from January 2015 through April 2017. Data were analyzed between August 2018 and June 2019.
Main Outcomes and Measures: Published quality measures and end-of-life events, organized by key domains of end-of-life care in the ICU.
Results: Of 16 945 eligible patients in the collaborative, 1536 (9.1%) died during their initial ICU stay. Of decedents, 654 (42.6%) were women, 1037 (67.5%) were 60 years or older, and 1088 (70.8%) were identified as white individuals. Wide unit-level variation in end-of-life care delivery was found. For example, the median unit-stratified rate of cardiopulmonary resuscitation avoidance in the last hour of life was 89.5% (interquartile range, 83.3%-96.1%; range, 50.0%-100%). Median rates of patients who were pain free and delirium free in last 24 hours of life were 75.1% (interquartile range, 66.0%-85.7%; range, 0-100%) and 60.0% (interquartile range, 43.7%-85.2%; range, 9.1%-100%), respectively. Ascertainment of an advance directive was associated with lower odds of cardiopulmonary resuscitation in the last hour of life (odds ratio, 0.70; 95% CI, 0.49-0.99; P = .04), and a documented offer or delivery of spiritual support was associated with higher odds of family presence at the time of death (odds ratio, 1.95; 95% CI, 1.37-2.77; P < .001). Death in a unit with an open visitation policy was associated with higher odds of pain in the last 24 hours of life (odds ratio, 2.21; 95% CI, 1.15-4.27; P = .02). Unsupervised cluster analysis revealed 3 mutually exclusive unit-level patterns of end-of-life care delivery among 63 ICUs with complete data. Cluster 1 units (14 units [22.2%]) had the lowest rate of cardiopulmonary resuscitation avoidance but achieved the highest pain-free rate. Cluster 2 (25 units [39.7%]) had the lowest delirium-free rate but achieved high rates of all other end-of-life events. Cluster 3 (24 units [38.1%]) achieved high rates across all favorable end-of-life events.
Conclusions and Relevance: In this study, end-of-life care delivery varied substantially among ICUs in the United States, and the patterns of care observed suggest that units can be characterized as higher and lower performing. To achieve optimal care for patients who die in an ICU, future research should target unit-level variation and disseminate the successes of higher-performing units.
Background: Barriers to palliative care still exist in long-term care settings for older people, which can mean that people with advanced dementia may not receive of adequate palliative care in the last days of their life; instead, they may be exposed to aggressive and/or inappropriate treatments. The aim of this multicentre study was to assess the clinical interventions and care at end of life in a cohort of nursing home (NH) residents with advanced dementia in a large Italian region.
Methods: This retrospective study included a convenience sample of 29 NHs in the Lombardy Region. Data were collected from the clinical records of 482 residents with advanced dementia, who had resided in the NH for at least 6 months before death, mainly focusing on the 7 days before death.
Results: Most residents (97.1%) died in the NH. In the 7 days before death, 20% were fed and hydrated by mouth, and 13.4% were tube fed. A median of five, often inappropriate, drugs were prescribed. Fifty-seven percent of residents had an acknowledgement of worsening condition recorded in their clinical records, a median of 4 days before death.
Conclusions: Full implementation of palliative care was not achieved in our study, possibly due to insufficient acknowledgement of the appropriateness of some drugs and interventions, and health professionals’ lack of implementation of palliative interventions. Future studies should focus on how to improve care for NH residents.