End Of Life In Hospital Research Articles

Measurement and documentation of quality indicators for the end-of-life care of hospital patients a nationwide retrospective record review study

BackgroundQuality of care at the end of life in hospitals is often perceived to be lower compared to the care that is provided to people who die in their own home. Documenting and measuring indicators of common end-of-life symptoms could help improve end-of-life care in hospitals. This study provided insight into quality indicators for the end-of-life care of patients who died in a Dutch hospital, and assessed differences between deceased patients who were admitted for palliative/terminal care versus patients admitted for other reasons.MethodsIn a retrospective record review study, trained nurses reviewed electronic health records (EHRs) of patients who died in 2019 (n = 2998), in a stratified sample of 20 Dutch hospitals. The nurses registered whether data was found in de EHRs about quality indicators for end-of-life care. This concerned: symptoms (pain, shortness of breath, anxiety, depressive symptoms), spiritual and psychological support and advance care planning. Multilevel regression analyses were performed to assess differences between patients who had been admitted for palliative/terminal care and patients admitted for other reasons.ResultsCommon end-of-life symptoms were rarely measured using a standardized method (e.g. Numeric Rating Scale, Visual Analogue Scale or Utrecht Symptom Diary). The symptom burden of pain was measured using a standardized method more often (63.3%) than the symptom burden of shortness of breath (2.2%), anxiety (0.5%) and depressive symptoms (0.3%). Similarly, little information was documented in the EHRs regarding wish to involve a spiritual counsellor, psychologist or social worker. Life expectancy was documented in 66%. The preferred place of death was documented less often (20%). The documentation of some quality indicators differed between patients who were admitted for palliative/terminal care compared to other patients.ConclusionExcept for the burden of pain, symptoms are rarely measured with standardized methods in patients who died in Dutch Hospitals. This study underlines the importance of documenting information about symptom burden and aspects related to advance care planning, and spiritual and psychological support to improve the quality of end-of-life care for patients in hospitals. Furthermore, uniformity in measuring methods improves the possibility to compare results between patient groups and settings.

Facilitating family needs and support at the end of life in hospital: A descriptive study

Background: Caring for family members of dying patients is a vital component of end-of-life care, yet family members’ needs at the end of life may be unmet. Aim: To explore hospital clinician assessment and facilitation of family needs and practices to support families at the end of life. Design: Descriptive study utilising a retrospective medical record audit. Setting and Sample: Undertaken in a large public hospital, the sample included 200 deceased patients from four specialities; general medicine (n = 50), intensive care (n = 50), inpatient palliative care (n = 50) and aged rehabilitation (n = 50). Data were analysed according to age; under 65-years and 65-years or over. Results: Deceased patients’ mean age was 75-years, 60% were Christian and Next-of-Kin were documented in 96% of cases. 79% spoke English, yet interpreters were used in only 6% of cases. Formal family meetings were held in 64% of cases. An assessment of family needs was undertaken in 52% of cases, and more likely for those under 65-years (p = 0.027). Cultural/religious practices were supported/facilitated in only 6% of all cases. Specialist palliative care involvement was more likely for those aged 65-years or over (p = 0.040) and social work involvement more likely for those under 65-years (p = 0.002). Pastoral care and bereavement support was low across the whole sample. Conclusions: Prioritising family needs should be core to end-of-life care. Anticipation of death should trigger routine referral to support personnel/services to ensure practice is guided by family needs. More research is needed to evaluate how family needs assessment can inform end-of-life care, supported by policy.

Challenges and Strategies Regarding Sedation at the End of Life in Hospitals and Nursing Homes

ContextSedation is an accepted, but controversially discussed and challenging measure to treat suffering at the end of life. Although most people die in hospitals or nursing homes, little is known how professionals in these settings deal with sedatives and sedation at the end of life. ObjectivesTo explore 1) challenges regarding use of sedatives and sedation at the end of life in hospitals and nursing homes, and 2) strategies, and supportive measures to meet these challenges, as perceived by nurses and physicians. MethodsMulticenter qualitative interview study. Forty-nine participants: 12 general practitioners and 12 nurses from five nursing homes, 12 physicians, and 13 nurses from five hospital departments (hematology/oncology (n = 2), neurology, geriatrics, gynecology). Semi-structured qualitative interviews. Data analysis guided by framework approach. ResultsPerceived challenges relate to three levels of the care situation: individual, interaction with others, and work environment. The main challenge was defining the adequate timing and/or dose. Other challenges, e.g., disagreements regarding indication or legal uncertainties, were highly interrelated, and strongly associated with this major challenge. Reported strategies and supportive measures to address challenges also corresponded to the three interrelated levels. Major named strategies were education and training, joint decision-making within the team and regular discussion with the patient and family. On the level work environment, no implemented strategies, but wishes for change were identified. ConclusionTo meet the identified challenges in a sustainable way and enable continuous improvement of quality of care, best practice recommendations, and other supportive measures have to address all identified levels of challenges.

A stepped-wedge randomised-controlled trial assessing the implementation, impact and costs of a prospective feedback loop to promote appropriate care and treatment for older patients in acute hospitals at the end of life: study protocol

BackgroundHospitalisation rates for the older population have been increasing with end-of-life care becoming a more medicalised and costly experience. There is evidence that some of these patients received non-beneficial treatment during their final hospitalisation with a third of the non-beneficial treatment duration spent in intensive care units. This study aims to increase appropriate care and treatment decisions and pathways for older patients at the end of life in Australia. This study will implement and evaluate a prospective feedback loop and tailored clinical response intervention at three hospitals in Queensland, Australia.MethodsA stepped-wedge cluster randomised trial will be conducted with up to 21 clinical teams in three acute hospitals over 70 weeks. The study involves clinical teams providing care to patients aged 75 years or older, who are prospectively identified to be at risk of non-beneficial treatment using two validated tools for detecting death and deterioration risks. The intervention’s feedback loop will provide the teams with a summary of these patients’ risk profiles as a stimulus for a tailored clinical response in the intervention phase. The Consolidated Framework for Implementation Research will be used to inform the intervention’s implementation and process evaluation. The study will determine the impact of the intervention on patient outcomes related to appropriate care and treatment at the end of life in hospitals, as well as the associated healthcare resource use and costs. The primary outcome is the proportion of patients who are admitted to intensive care units. A process evaluation will be carried out to assess the implementation, mechanisms of impact, and contextual barriers and enablers of the intervention.DiscussionThis intervention is expected to have a positive impact on the care of older patients near the end of life, specifically to improve clinical decision-making about treatment pathways and what constitutes appropriate care for these patients. These will reduce the incidence of non-beneficial treatment, and improve the efficiency of hospital resources and quality of care. The process evaluation results will be useful to inform subsequent intervention implementation at other hospitals.Trial registrationAustralia New Zealand Clinical Trial Registry (ANZCTR), ACTRN12619000675123p (approved 6 May 2019),

Hospitalisation at the end of life among cancer and non-cancer patients in Denmark: a nationwide register-based cohort study

ObjectivesEnd-of-life hospitalisations may not be associated with improved quality of life. Studies indicate differences in end-of-life care for cancer and non-cancer patients; however, data on hospital utilisation are sparse. This...

Agitation near the end of life with dementia: An ethnographic study of care.

Agitation is common in people living with dementia especially at the end of life. We examined how staff interpreted agitation behavior in people with dementia nearing end of life, how this may influence their responses and its impact on the quality of care. Ethnographic study. Structured and semi-structured non-participant observations (referred to subsequently in this paper as "structured observations") of people living with dementia nearing the end of life in hospital and care homes (south-east England) and in-depth interviews with staff, conducted August 2015-March 2017. Three data sources: 1) detailed field notes, 2) observations using a structured tool and checklist for behaviors classed as agitation and staff and institutional responses, 3) staff semi-structured qualitative interviews. We calculated the time participants were agitated and described staff responses. Data sources were analyzed separately, developed continuously and relationally during the study and synthesized where appropriate. We identified two main 'ideal types' of staff explanatory models for agitation: In the first, staff attribute agitated behaviors to the person's "moral judgement", making them prone to rejecting or punitive responses. In the second staff adopt a more "needs-based" approach in which agitation behaviors are regarded as meaningful and managed with proactive and investigative approaches. These different approaches appear to have significant consequences for the timing, frequency and quality of staff response. While these models may overlap they tend to reflect distinct organizational resources and values. Care worker knowledge about agitation is not enough, and staff need organizational support to care better for people living with dementia towards end of life. Positional theory may help to explain much of the cultural-structural context that produces staff disengagement from people with dementia, offering insights on how agitation behavior is reframed by some staff as dangerous. Such behavior may be associated with low-resource institutions with minimal staff training where the personhood of staff may be neglected.

Managing uncertain recovery for patients nearing the end of life in hospital: a mixed-methods feasibility cluster randomised controlled trial of the AMBER care bundle

BackgroundThe AMBER (Assessment, Management, Best Practice, Engagement, Recovery Uncertain) care bundle is a complex intervention used in UK hospitals to support patients with uncertain recovery. However, it has yet to be evaluated in a randomised controlled trial (RCT) to identify potential benefits or harms. The aim of this trial was to investigate the feasibility of a cluster RCT of the AMBER care bundle.MethodsThis is a prospective mixed-methods feasibility cluster RCT. Quantitative data collected from patients (or proxies if patients lack capacity) were used (i) to examine recruitment, retention and follow-up rates; (ii) to test data collection tools for the trial and determine their optimum timing; (iii) to test methods to identify the use of financial resources; and (iv) to explore the acceptability of study procedures for health professionals and patients. Descriptive statistical analyses and thematic analysis used the framework approach.ResultsIn total, 894 patients were screened, of whom 220 were eligible and 19 of those eligible (8.6%) declined to participate. Recruitment to the control arm was challenging. Of the 728 patients screened for that arm, 647 (88.9%) were excluded. Overall, 65 patients were recruited (81.3% of the recruitment target of 80). Overall, many were elderly (≥80 years, 46.2%, n = 30, mean = 77.8 years, standard deviation [SD] = 12.3 years). Over half (53.8%) had a non-cancer diagnosis, with a mean of 2.3 co-morbidities; 24.6% patients (n = 16) died during their hospital stay and 35.4% (n = 23) within 100 days of discharge. In both trial arms, baseline IPOS subscale scores identified moderate patient anxiety (control: mean 13.3, SD 4.8; intervention: mean 13.3, SD 5.1), and howRwe identified a good care experience (control: mean 13.1, SD 2.5; intervention: mean 11.5, SD 2.1). Collecting quantitative service use and quality of life data was feasible. No patient participants regarded study involvement negatively. Focus groups with health professionals identified concerns regarding (i) the subjectivity of the intervention’s eligibility criteria, (ii) the need to prognosticate to identify potential patients and (iii) consent procedures and the length of the questionnaire.ConclusionsA full trial of the AMBER care bundle is technically feasible but impractical due to fundamental issues in operationalising the intervention’s eligibility criteria, which prevents optimal recruitment. Since this complex intervention continues to be used in clinical care and advocated in policy, alternative research approaches must be considered and tested.Trial registrationInternational Standard Randomised Controlled Trial Number (ISRCTN) Register, ISRCTN36040085.

Practice development using video-reflexive ethnography: promoting safe space(s) towards the end of life in hospital

Practice development using video-reflexive ethnography: promoting safe space(s) towards the end of life in hospital

End-of-life preferences of the general public: Results from a Japanese national survey

PurposeTo determine under different End-of-Life (EoL) scenarios the preferences of the general public for EoL care setting and Life-sustaining-Treatments (LST), and to develop a new framework to assess these preferences. MethodUsing a 2-stage, geographical cluster sampling method, we conducted a postal survey across Japan of 2000 adults, aged 20+. Four EoL scenarios were used: cancer, cardiac failure, dementia and persistent vegetative state (PVS). ResultsWe received 969 valid responses (response rate 48.5%). Preference for EoL care setting varied by illness with those wishing to spend EoL at home only 39% for cancer, 22% for cardiac failure, and 10–11% for dementia and PVS. Preference for LST differed by scenario and treatment type. In cancer, cardiac failure and dementia, about half to two thirds expressed a preference for antibiotics and fluid drip infusion but few for nasogastric (NG) tube feeding, percutaneous endoscopic gastrostomy (PEG), ventilation or cardiopulmonary resuscitation (CPR). Although our models accounted for only 3–9% of the variance, preferences to receive LST were associated with preference to spend EoL in hospital for cancer and cardiac failure but not dementia. ConclusionsFew people preferred to die at home, while a preference for hospital was largely determined by factors other than preference for LST.

Association between high-cost imaging and hospice use at the end of life of cancer patients.

6504 Background: Use of high cost imaging modalities can inform prognosis and potentially de-escalate unnecessary care at the end of life of cancer patients, but it may also be associated with increased health care expenditures. This analysis investigated the association of hospital-level use of advanced imaging studies with aggressiveness of care near death, as measured by hospice enrollment. Methods: Using SEER-Medicare, patients who died from common solid tumors between 2002 and 2007 were identified and hospital-level utilization of CT, MRI and PET scans were categorized into quartiles. Patients were assigned to the hospital at which they spent the majority of their inpatient days during the last 6 months of life. Multivariate-adjusted logistic regression models based on tumor type were constructed to correlate imaging use with late as well as all hospice admissions, defined as enrollment within 3 days and 18 months of death, respectively. Results: A total of 7,876 breast, 31,933 lung, 12,877 colorectal and 9,137 prostate cancer patients were included. High cost imaging varied across tumor types with rates being highest for lung cancer (mean of 2.29 CT, 0.58 MRI and 0.21 PET scans per patient) and lowest for prostate cancer (mean of 1.25 CT, 0.41 MRI, and 0.01 PET scans per patient) in the 6 months before death. Overall hospice use was least frequent in colorectal cancer (50% of patients) while late hospice admission was most common in lung cancer (11% of patients). Hospitals within the top quartile of imaging use generally had decreased odds of hospice utilization and higher likelihood of late hospice enrollment across most cancer types (Table). Conclusions: In this large cohort, receipt of care near end of life in hospitals with the highest rates of advanced imaging use was associated with lower use of and later enrollment to hospice. High cost imaging is not correlated with de-escalation of aggressive care. [Table: see text]

38 End of Life in hospital

Evaluation of the effectiveness of treatment for chronic obstructive pulmonary disease (COPD) requires the assessment of both clinical and physiological measures. Parameters such as the forced expiratory volume in 1 s are well established in providing an indication of the degree of airflow limitation. However, additional measurements, such as dyspnoea, functional status and health status, are required to provide a complete picture of COPD. Indeed, dyspnoea is the predominant symptom of COPD experienced by the patient, which treatment is designed to reduce. Methods of assessing dyspnoea have developed over the previous five decades. The most widely used instruments for assessing the impact of dyspnoea are the baseline dyspnoea index, the transition dyspnoea index and the Medical Research Council Questionnaire.A more comprehensive approach to the assessment of disability caused by dyspnoea and fatigue is provided by assessments of functional status, such as the pulmonary functional status and dyspnoea questionnaire. Respiratory-specific health status questionnaires, such as the St. George's Respiratory Questionnaire, attempt to capture the wide range of effects of COPD into a single score that reflects the overall impact of the disease.Developing the means to measure the effects of COPD is important, both in terms of understanding disease pathophysiology for research purposes, and in terms of accurately assessing the effects of treatment on the patient. Future developments will include computerising these methodologies to permit faster and more individual patient-centred measurements.

Contempo 1997: End-of-Life Care-Reply

In Reply. —We agree with Drs Burke and Steele that opportunities abound for teaching medical students and resident physicians how to provide excellent care for the dying. However, these opportunities are ignored routinely in medical education, and pernicious financial barriers still provide disincentives for changing this situation. Patients nearing the end of life in hospitals should be a focus of special concern. However, it seems that these patients continue to be marginalized by educational programs and discounted as uninteresting teaching material. End-of-life care often is miscategorized by medical educators as ethics. While ethical issues in the care of the dying might attract considerable attention, there is no ethical dilemma to be faced in response to questions about treatment, such as whether students should know equi-analgesic dosages of various narcotic drugs. Yet students learn quickly that they will be rewarded more for knowing the patients' serum potassium levels than for attending to the