Dignity and Distress towards the End of Life across Four Non-Cancer Populations.
Ontology highlight
ABSTRACT:
SUBMITTER: Chochinov HM
PROVIDER: S-EPMC4725711 | biostudies-other | 2016
REPOSITORIES: biostudies-other
Similar Datasets
Project description:Hospitals vary substantially in their end-of-life (EOL) treatment intensity. It is unknown if patterns of EOL treatment intensity are consistent across conditions.To explore the relationship between hospitals' cancer- and non-cancer-specific EOL treatment intensity.We conducted a retrospective cohort analysis of Pennsylvania acute care hospital admissions for either cancer or congestive heart failure (CHF) and/or chronic obstructive pulmonary disease (COPD) between 2001 and 2007, linked to vital statistics through 2008. We calculated Bayes's shrunken case-mix standardized (observed-to-expected) ratios of intensive care and life-sustaining treatment use among two EOL cohorts: those prospectively identified at high probability of dying on admission and those retrospectively identified as terminal admissions (decedents). We then summed these to create a hospital-specific prospective and retrospective overall EOL treatment intensity index for cancer vs. CHF/COPD.The sample included 207,523 admissions with 15% or greater predicted probability of dying on admission among 172,041 unique adults and 120,372 terminal admissions at 166 hospitals; these two cohorts overlapped by 52,986 admissions. There was substantial variation between hospitals in their standardized EOL treatment intensity ratios among cancer and CHF/COPD admissions. Within hospitals, cancer- and CHF/COPD-specific standardized EOL treatment intensity ratios were highly correlated for intensive care unit (ICU) admission (prospective ? = 0.81; retrospective ? = 0.78), ICU lengths of stay (? = 0.76; 0.64), mechanical ventilation (? = 0.73; 0.73), and hemodialysis (? = 0.60; 0.71) and less highly correlated for tracheostomy (? = 0.43; 0.53) and gastrostomy (? = 0.29; 0.30). Hospitals' overall EOL intensity index for cancer and CHF admissions were correlated (prospective ? = 0.75; retrospective ? = 0.75) and had equal group means (P-value = 0.631; 0.699).Despite substantial difference between hospitals in EOL treatment intensity, within-hospital homogeneity in EOL treatment intensity for cancer- and non-cancer populations suggests the existence of condition-insensitive institutional norms of EOL treatment.
| S-EPMC4329285 | biostudies-other
Project description:PurposeCross-sectional studies show that statins, used in cardiovascular disease prevention, are often discontinued approaching death. Studies investigating associations between statin exposure and cancer outcomes, not accounting for these exposure changes, are prone to reverse causation bias. The aim of this study was to describe longitudinally the changes in statin initiation and continuation prior to death in patients with breast or colorectal cancer, thus establishing an appropriate exposure lag time.MethodsThis study was carried out using linked cancer registry and prescribing data. We identified patients who died of their cancer (cases) and cancer survivors were used as controls. The probability of initiating or continuing statin use was estimated up to 5 years prior to death (or index date). Conditional binomial models were used to estimate relative risks and risk differences for associations between approaching cancer death and statin use.ResultsCompared to controls, the probability of continued statin use in breast cancer cases was significantly lower 3 months prior to death (RR 0.86 95% CI 0.79, 0.94). Similarly, in colorectal cancer cases, the probability of continued statin use was significantly lower 3 months prior to colorectal cancer death (RR 0.77 95% CI 0.68, 0.88).ConclusionA significant proportion of patients will cease statin treatment in the months prior to a colorectal or breast cancer death.
| S-EPMC5378743 | biostudies-literature
Project description:ObjectivesTo examine costs of care from a healthcare sector perspective within 1 year before death in patients with non-cancer diseases and patients with cancer.MethodsThis nationwide registry-based study identified all Danish citizens dying from major non-cancer diseases or cancer in 2010-2016. Applying the cost-of-illness method, we included costs of somatic hospitals, including hospital-based specialist palliative care, primary care, prescription medicine and hospice expressed in 2022 euros. Costs of patients with non-cancer diseases and cancer were compared using regression analyses adjusting for sex, age, comorbidity, residential region, marital/cohabitation status and income level.ResultsWithin 1 year before death, mean total healthcare costs were €27,185 [95% confidence interval (CI) €26,970-27,401] per patient with non-cancer disease (n = 109,723) and €51,348 (95% CI €51,098-51,597) per patient with cancer (n = 108,889). The adjusted relative total healthcare costs, i.e. the ratio of the mean costs, of patients with non-cancer diseases was 0.64 (95% CI 0.63-0.66) at 12 months before death and 0.91 (95% CI 0.90-0.92) within 30 days before death compared with patients with cancer. Mean costs of hospital-based specialist palliative care and hospice in the year leading up to death were €17 (95% CI €13-20) and €90 (95% CI €77-102) per patient with non-cancer disease but €1552 (95% CI €1506-1598) and €3411 (95% CI €3342-3480) per patient with cancer.ConclusionsWithin 1 year before death, total healthcare costs, mainly driven by hospital costs, were substantially lower for patients with non-cancer diseases compared with patients with cancer. Moreover, the costs of hospital-based specialist palliative care and hospice were minimal for patients with non-cancer diseases.
| S-EPMC10471564 | biostudies-literature
Project description:BackgroundResources for healthcare professionals, patients and those important to them relating to planning and coordinating treatment and care at the end of life are abundant, and can be difficult to navigate. However, they have not been systematically collated or catalogued in terms of their purpose, scope or intended audience.AimTo collate, categorise and characterise advance care planning and end-of-life treatment and care (EoLT + C) resources directed towards healthcare professionals, patients and their families.MethodsRapid review and thematic synthesis of resources available in the United Kingdom. Google searches and reviews of websites belonging to selected organisations that develop and publish materials relating to EoLT + C, and advance care planning were used. Materials were included if they were intended for those over 18 living in the UK and pertained to five domains of EoLT + C: identifying those approaching end of life; accessing EoLT + C services; conducting important conversations about EoLT + C and preferences; advance care planning, including recording of preferences and plans; and ensuring that plans and preferences are accessed and used by health and social care services.Results246 resources directed at healthcare professionals, patients and their families were identified, collated, catalogued and made internationally available for clinicians, researchers, patients and the public. 61 were classified as interactive, providing decision support in EoLT + C that went beyond simply providing information. Of these, there was notable content overlap among tools for identifying patients in their last year of life. There was variation in the development of tools across all domains of end-of-life care by geography and patient group. Few interactive resources integrated seamlessly with a digital interface or healthcare provider workflows. Incentives for the adoption of best-practice appeared rare.ConclusionsWe present a repeatable and scalable approach to the cataloguing and characterisation of palliative care resources. The identified resources will be of benefit not only to those in the UK but to those in other countries, developing or evaluating their own resources for aiding professionals and patients to plan and deliver excellent treatment and care at the end of life.
| S-EPMC9706845 | biostudies-literature
Project description:BACKGROUND:While disparities in end-of-life care have been well-documented, explanations for the persistence of disparities are less clear. This study sought to examine diverse perceptions of end-of-life care, especially regarding how medical professionals can better serve all populations. OBJECTIVE:To investigate similarities and differences in end-of-life care preferences, across racial and ethnic groups. DESIGN:This work consists of a qualitative study utilizing in-depth focus group discussions. SETTING/PARTICIPANTS:Six community-based focus groups were conducted with a total of 39 participants. Two groups were composed of African American participants, 2 had Latino participants, and 2 groups had white participants. RESULTS:Analysis produced 3 major themes: (1) clear, comprehensive, and culturally relevant provider-patient communication regarding serious illness; (2) provider characteristics and competency; and (3) health system supports and barriers. Although all groups had individuals who expressed a strong preference for direct communication, individuals varied within groups. All groups discussed concerns that the costs of care are high and that financial considerations are given more importance than high-quality care. Groups diverged in their focus on provider characteristics and feelings of marginalization. African American and Latino groups emphasized a desire to match characteristics with providers, and African American groups discussed that their marginalization in the health-care system requires hypervigilance to receive high-quality care. CONCLUSIONS:Improvements in care would come from acknowledging diversity within groups, provider demonstration of comfort and competence, more effective care coordination, and recruitment of providers who share similar characteristics with the communities they serve.
| S-EPMC6786269 | biostudies-literature
Project description:ImportanceEvidence supports palliative care effectiveness. Given workforce constraints and the costs of new services, payers and providers need help to prioritize their investments. They need to know which patients to target, which personnel to hire, and which services best improve outcomes.ObjectiveTo inform how payers and providers should identify patients with "advanced illness" and the specific interventions they should implement, we reviewed the evidence to identify (1) individuals appropriate for palliative care and (2) elements of health service interventions (personnel involved, use of multidisciplinary teams, and settings of care) effective in achieving better outcomes for patients, caregivers, and the healthcare system.Evidence reviewSystematic searches of MEDLINE, EMBASE, PsycINFO, Web of Science, and Cochrane Database of Systematic Reviews databases (1/1/2001-1/8/2015).ResultsRandomized controlled trials (124) met inclusion criteria. The majority of studies in cancer (49%, 38 of 77 studies) demonstrated statistically significant patient or caregiver outcomes (e.g., p?<?0.05), as did those in congestive heart failure (CHF) (62%, 13 of 21), chronic obstructive pulmonary disease (COPD; 58%, 11 of 19), and dementia (60%, 15 of 25). Most prognostic criteria used clinicians' judgment (73%, 22 of 30). Most interventions included a nurse (70%, 69 of 98), and many were nurse-only (39%, 27 of 69). Social workers were well represented, and home-based approaches were common (56%, 70 of 124). Home interventions with visits were more effective than those without (64%, 28 of 44; vs. 46%, 12 of 26). Interventions improved communication and care planning (70%, 12 of 18), psychosocial health (36%, 12 of 33, for depressive symptoms; 41%, 9 of 22, for anxiety), and patient (40%, 8 of 20) and caregiver experiences (63%, 5 of 8). Many interventions reduced hospital use (65%, 11 of 17), but most other economic outcomes, including costs, were poorly characterized. Palliative care teams did not reliably lower healthcare costs (20%, 2 of 10).ConclusionsPalliative care improves cancer, CHF, COPD, and dementia outcomes. Effective models include nurses, social workers, and home-based components, and a focus on communication, psychosocial support, and the patient or caregiver experience. High-quality research on intervention costs and cost outcomes in palliative care is limited.
| S-EPMC5011630 | biostudies-literature
Project description:Recent advances in label-free histology promise a new era for real-time diagnosis in neurosurgery. Deep learning using autofluorescence is promising for tumor classification without histochemical staining process. The high image resolution and minimally invasive diagnostics with negligible tissue damage is of great importance. The state of the art is raster scanning endoscopes, but the distal lens optics limits the size. Lensless fiber bundle endoscopy offers both small diameters of a few 100 microns and the suitability as single-use probes, which is beneficial in sterilization. The problem is the inherent honeycomb artifacts of coherent fiber bundles (CFB). For the first time, we demonstrate an end-to-end lensless fiber imaging with exploiting the near-field. The framework includes resolution enhancement and classification networks that use single-shot CFB images to provide both high-resolution imaging and tumor diagnosis. The well-trained resolution enhancement network not only recovers high-resolution features beyond the physical limitations of CFB, but also helps improving tumor recognition rate. Especially for glioblastoma, the resolution enhancement network helps increasing the classification accuracy from 90.8 to 95.6%. The novel technique enables histological real-time imaging with lensless fiber endoscopy and is promising for a quick and minimally invasive intraoperative treatment and cancer diagnosis in neurosurgery.
| S-EPMC9640670 | biostudies-literature
Project description:Glycosaminoglycans (GAGs) are polysaccharides that play vital functional roles in numerous biological processes, and compounds belonging to this class have been implicated in a wide variety of diseases. Chondroitin AC lyase (ChnAC) (EC 4.2.2.5) catalyzes the degradation of various GAGs, including chondroitin sulfate and hyaluronic acid, to give the corresponding disaccharides containing an Δ(4)-unsaturated uronic acid at their non-reducing terminus. ChnAC has been isolated from various bacteria and utilized as an enzymatic tool for study and evaluating the sequencing of GAGs. Despite its substrate specificity and the fact that its crystal structure has been determined to a high resolution, the direction in which ChnAC catalyzes the cleavage of oligosaccharides remain unclear. Herein, we have determined the structural cues of substrate depolymerization and the cleavage direction of ChnAC using model substrates and recombinant ChnAC protein. Several structurally defined oligosaccharides were synthesized using a chemoenzymatic approach and subsequently cleaved using ChnAC. The degradation products resulting from this process were determined by mass spectrometry. The results revealed that ChnAC cleaved the β1,4-glycosidic linkages between glucuronic acid and glucosamine units when these bonds were located on the reducing end of the oligosaccharide. In contrast, the presence of a GlcNAc-α-1,4-GlcA unit at the reducing end of the oligosaccharide prevented ChnAC from cleaving the GalNAc-β1,4-GlcA moiety located in the middle or at the non-reducing end of the chain. These interesting results therefore provide direct proof that ChnAC cleaves oligosaccharide substrates from their reducing end toward their non-reducing end. This conclusion will therefore enhance our collective understanding of the mode of action of ChnAC.
| S-EPMC4813468 | biostudies-literature
Project description:ObjectivesA dementia nurse specialist (DNS) is expected to improve the quality of care and support to people with dementia nearing, and at, the end of life (EoL) by facilitating some key features of care. The aim of this study was to estimate willingness-to-pay (WTP) values from the general public perspective, for the different levels of support that the DNS can provide.MethodsContingent valuation methods were used to elicit the maximum WTP for scenarios describing different types of support provided by the DNS for EoL care in dementia. In a general population online survey, 1002 participants aged 18?years or more sampled from the United Kingdom provided valuations. Five scenarios were valued with mean WTP value calculated for each scenario along with the relationship between mean WTP and participant characteristics.ResultsThe mean WTP varied across scenarios with higher values for the scenarios offering more features. Participants with some experience of dementia were willing to pay more compared with those with no experience. WTP values were higher for high-income groups compared with the lowest income level (P?<?.05). There was no evidence to suggest that respondent characteristics such as age, gender, family size, health utility or education status influenced the WTP values.ConclusionThe general population values the anticipated improvement in dementia care provided by a DNS. This study will help inform judgements on interventions to improve the quality of EoL care.
| S-EPMC7187265 | biostudies-literature
Project description:RationaleCommunication with family of critically ill patients is often poor and associated with family distress.ObjectivesTo determine if an intensive care unit (ICU) communication facilitator reduces family distress and intensity of end-of-life care.MethodsWe conducted a randomized trial at two hospitals. Eligible patients had a predicted mortality greater than or equal to 30% and a surrogate decision maker. Facilitators supported communication between clinicians and families, adapted communication to family needs, and mediated conflict.Measurements and main resultsOutcomes included depression, anxiety, and post-traumatic stress disorder (PTSD) among family 3 and 6 months after ICU and resource use. We identified 488 eligible patients and randomized 168. Of 352 eligible family members, 268 participated (76%). Family follow-up at 3 and 6 months ranged from 42 to 47%. The intervention was associated with decreased depressive symptoms at 6 months (P = 0.017), but there were no significant differences in psychological symptoms at 3 months or anxiety or PTSD at 6 months. The intervention was not associated with ICU mortality (25% control vs. 21% intervention; P = 0.615) but decreased ICU costs among all patients (per patient: $75,850 control, $51,060 intervention; P = 0.042) and particularly among decedents ($98,220 control, $22,690 intervention; P = 0.028). Among decedents, the intervention reduced ICU and hospital length of stay (28.5 vs. 7.7 d and 31.8 vs. 8.0 d, respectively; P < 0.001).ConclusionsCommunication facilitators may be associated with decreased family depressive symptoms at 6 months, but we found no significant difference at 3 months or in anxiety or PTSD. The intervention reduced costs and length of stay, especially among decedents. This is the first study to find a reduction in intensity of end-of-life care with similar or improved family distress. Clinical trial registered with www.clinicaltrials.gov (NCT 00720200).
| S-EPMC4731711 | biostudies-literature