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      Were clinical routines for good end-of-life care maintained in hospitals and nursing homes during the first three months of the outbreak of COVID-19? A national register study

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          Abstract

          Context

          Although the COVID-19 pandemic might affect important clinical routines, few studies have focused on the maintenance of good quality in end-of-life care.

          Objectives

          The objective was to examine whether adherence to clinical routines for good end-of-life care differed for deaths due to COVID-19 compared to a reference cohort from 2019, and whether they differed between nursing homes and hospitals.

          Methods

          Data about five items reflecting clinical routines for persons who died an expected death from COVID-19 during the first three months of the pandemic (March-May 2020) were collected from the Swedish Register of Palliative Care. The items were compared between the COVID-19 group and the reference cohort, and between the nursing home and hospital COVID-19 deaths.

          Results

          1316 expected deaths were identified in nursing homes and 685 in hospitals. Four of the five items differed for total COVID-19 group compared to the reference cohort: fewer were examined by a physician during the last days before death, pain and oral health were less likely to be assessed, and fewer had had a specialised palliative care team consultation (p < .0001, respectively). Assessment of symptoms other than pain did not differ significantly. The five items differed between the nursing homes and hospitals in the COVID-19 group, most notably regarding the proportion of persons examined by a physician during the last days (nursing homes – 18%, hospitals – 100%).

          Conclusion

          This national register study shows that several clinical routines for end-of-life care did not meet the usual standards during the first three months of the COVID-19 pandemic in Sweden. Higher preparedness for and monitoring of end-of-life care quality should be integrated into future pandemic plans.

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          Most cited references 25

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          The Hospital Dementia Services Project: age differences in hospital stays for older people with and without dementia.

          People with dementia may have adverse outcomes following periods of acute hospitalization. This study aimed to explore the effects of age upon hospitalization outcomes for patients with dementia in comparison to patients without dementia. Data extracted from the New South Wales Admitted Patient Care Database for people aged 50 years and over for the period July 2006 to June 2007 were linked to create person-based records relating to both single and multiple periods of hospitalization. This yielded nearly 409,000 multi-day periods of hospitalization relating to almost 253,000 persons. Using ICD-10-AM codes for dementia and other principal diagnoses, the relationship between age and hospitalization characteristics were examined for people with and without dementia. Dementia was age-related, with 25% of patients aged 85 years and over having dementia compared with 0.9% of patients aged 50-54 years. People with dementia were more likely to be admitted for fractured femurs, lower respiratory tract infections, urinary tract infections and head injuries than people without dementia. Mean length of stay for admissions for people with dementia was 16.4 days and 8.9 days for those without dementia. People with dementia were more likely than those without to be re-admitted within three months for another multi-day stay. Mortality rates and transfers to nursing home care were higher for people with dementia than for people without dementia. These outcomes were more pronounced in younger people with dementia. Outcomes of hospitalization vary substantially for patients with dementia compared with patients without dementia and these differences are frequently most marked among patients aged under 65 years.
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            A brief, patient- and proxy-reported outcome measure in advanced illness: Validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS)

            Background: Few measures capture the complex symptoms and concerns of those receiving palliative care. Aim: To validate the Integrated Palliative care Outcome Scale, a measure underpinned by extensive psychometric development, by evaluating its validity, reliability and responsiveness to change. Design: Concurrent, cross-cultural validation study of the Integrated Palliative care Outcome Scale – both (1) patient self-report and (2) staff proxy-report versions. We tested construct validity (factor analysis, known-group comparisons, and correlational analysis), reliability (internal consistency, agreement, and test–retest reliability), and responsiveness (through longitudinal evaluation of change). Setting/participants: In all, 376 adults receiving palliative care, and 161 clinicians, from a range of settings in the United Kingdom and Germany Results: We confirm a three-factor structure (Physical Symptoms, Emotional Symptoms and Communication/Practical Issues). Integrated Palliative care Outcome Scale shows strong ability to distinguish between clinically relevant groups; total Integrated Palliative care Outcome Scale and Integrated Palliative care Outcome Scale subscale scores were higher – reflecting more problems – in those patients with ‘unstable’ or ‘deteriorating’ versus ‘stable’ Phase of Illness (F = 15.1, p   0.60). Longitudinal validity in form of responsiveness to change is good. Conclusion: The Integrated Palliative care Outcome Scale is a valid and reliable outcome measure, both in patient self-report and staff proxy-report versions. It can assess and monitor symptoms and concerns in advanced illness, determine the impact of healthcare interventions, and demonstrate quality of care. This represents a major step forward internationally for palliative care outcome measurement.
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              Nursing homes and COVID‐19: We can and should do better

              The COVID‐19 pandemic is providing us with many painful lessons particularly the vulnerability of individuals living with chronic conditions and the need for preparedness, coordination and monitoring. Long‐term care facilities, including nursing homes, skilled nursing facilities and assisted living facilities, provide care for some of the most vulnerable populations in society, including older people and those with chronic medical conditions. In the United Kingdom, there are about 17,000 people living in nursing and residential care homes and 200,000 Australians live or stay in residential aged care on any given day. In the United States (US), more than 1.3 million individuals live in 15,600 nursing home facilities. Washington State in the United States signalled the beginning of the COVID‐19 pandemic in the United States, where there were 35 deaths in a single King County facility. The numbers of positive cases and deaths in nursing homes from COVID‐19 continue to rise in other residential facilities across the world (Adalja, Toner, & Inglesby, 2020; Bedford et al., 2020). Nursing homes have been documented as having high transmission rates for infectious diseases for a range of reasons including crowding, sharing of bathroom facilities and gathering in common areas as well as low preparedness for infection control. Recognising the high risk associated with these facilities, the Centers for Disease Control in the United States has released interim guidance for the prevention and control of COVID‐19 (Centers for Disease Control & Prevention, 2020). Staffing shortages and frequent staff turnover, high resident‐to‐staff ratios, supply shortages, and inadequate infection prevention and control measures are well documented in these settings but solutions are less apparent (Dorritie et al., 2020). In recent times, there has been a focus on admissions to acute care from nursing homes because of lack of resources to manage clinical deterioration (Considine et al., 2019). Strategies have been trialled to augment nursing care, such as nurse practitioners providing consultation, but these are not systemic solutions; we need to be strategic and data driven in health workforce planning. A global pandemic increases the salience of ensuring safe environments for care of the most vulnerable (Bedford et al., 2020). Over recent decades, the complexity of management has increased in long‐term facilities including the care of individuals with tracheostomies and complex wounds. Although the word “nursing” is in the titles of these institutions and their regulations, this can lead to unrealistic expectations for the level of care provided. The numbers of registered nurses (RNs) likely to be found in long‐term facilities are low with licensed practical nurses and certified nursing assistant providing the majority of care. These healthcare workers are valuable members of the healthcare team (Laxer et al., 2016), but they do not have the skills, resources, training and scope of practice of the RN in dealing with the challenges of individuals requiring complex care, particularly in the context of a pandemic. Although the role of the RN is specified in guidelines, with facilities in the United States required to have at least one on site for at least eight hours every day, these guidelines are commonly not adhered to (Geng, Stevenson, & Grabowski, 2019) and numbers are likely inadequate to meet needs. Internationally, the quality of patient outcomes has been challenged and often attributed to staffing or resources (Andersson, Frank, Willman, Sandman, & Hansebo, 2018; Spilsbury, Hewitt, Stirk, & Bowman, 2011). A registered nurse is an individual who has graduated from an approved school of nursing and has passed a national licensing examination. The RN undertakes physical assessment and comprehensive health evaluation before making critical decisions; provides counselling and education; administers medications and nonpharmacological interventions; and engages in care coordination, while collaborating with other healthcare professionals. In many countries, there has been consistent advocacy to ensure a minimum level of baccalaureate education for entry to practice and there have been several influential studies demonstrating a positive correlation between level of education and patient outcomes in acute care but the data in long‐term facilities are not available (Kutney‐Lee, Sloane, & Aiken, 2013; National Academies of Medicine, 2011). In the United States, Kaiser Health News reports large variability based on the availability of RN staffing (Kaiser Health News, 2019). Geng and colleagues studied a number of facilities and found that greater than half of the facilities met the expected staffing level less than 20% of the time. These staffing issues were most evident for RNs, where 91% of the facilities met guidelines less than 60% of the time (Geng et al., 2019). A welcome advance in the context of COVID‐19 has been the expansion of telehealth and telemedicine services to nursing homes, which may provide opportunities to improve care in the longer term. Recent events have demonstrated the need for well‐funded, responsive and efficient workforce models that protect both residents and healthcare workers. This is a delicate dance, as we need to provide adequate clinical care without excessive medicalisation of what is an individuals’ home. Nevertheless, events over prior weeks that continue to unfold challenge us and for many of us it is not appropriate in a just and civilised society to deny our most vulnerable access to quality care. Many may argue that this is an aberration in the context of a pandemic but data over many decades tell us, this is not the case. The COVID‐19 pandemic has taught us failing to address staffing and care models in nursing homes and skilled nursing facilities is in fact a public health issue. There will be many valuable examples learned from the COVID‐19 pandemic and we hope that the importance of infection control practices and the role of RNs in residential facilities is not a lost lesson.
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                Author and article information

                Journal
                J Pain Symptom Manage
                J Pain Symptom Manage
                Journal of Pain and Symptom Management
                Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine
                0885-3924
                1873-6513
                7 October 2020
                7 October 2020
                Affiliations
                [1 ]Department of radiation sciences, Umeå university, SE-90187 Umeå, Sweden
                [2 ]Professor of Palliative Medicine, Department of Oncology-Pathology, Karolinska Institutet, Stockholm and R & D department, Stockholms Sjukhem Foundation
                [3 ]Palliative Care Unit Stockholms Sjukhem Foundation, Stockholm
                [4 ]Department of Oncology-Pathology, Karolinska Institutet Stockholm and R & D department, Stockholms Sjukhem Foundation
                Author notes
                []Corresponding:
                Article
                S0885-3924(20)30794-6
                10.1016/j.jpainsymman.2020.09.043
                7538392
                © 2020 Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine.

                Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.

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