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1.
J Gerontol Nurs ; 49(6): 13-18, 2023 Jun.
Article in English | MEDLINE | ID: covidwho-20236918

ABSTRACT

With the current shortage of hospice/palliative care (HPC) workforce, there is an urgent need to train a generation of nurses with clinical competency in HPC to ensure equitable access and optimal care for patients living with serious illness or at the end of life. The recent demand for HPC teaching in nursing education calls for innovation in establishing clinical placements. Palliative care nursing experts in New York State were surveyed between June and August 2022 about facilitators of academic-clinical partnerships between nursing schools and clinical settings. Inductive content analysis of open-ended responses revealed six major interconnected themes: (a) Increase Awareness of HPC in the Nursing Program, (b) Build a Relationship With Administrators, (c) Look Beyond Acute Care Partnerships, (d) Offer Incentives, (e) Develop Direct Care Experiential Opportunities, and (f) Develop Non-Direct Care Experiential Opportunities. Findings provide rich insights into key considerations for successful collaboration between nursing schools and clinical sites. [Journal of Gerontological Nursing, 49(6), 13-18.].


Subject(s)
Education, Nursing, Baccalaureate , Education, Nursing , Hospice Care , Hospice and Palliative Care Nursing , Hospices , Students, Nursing , Humans , Palliative Care
2.
Aging Clin Exp Res ; 35(6): 1385-1392, 2023 Jun.
Article in English | MEDLINE | ID: covidwho-2320800

ABSTRACT

BACKGROUND: Older adults living in long-term care facilities (LTCF) have been severely affected by COVID-19. Hospice care (HC) facilities and palliative care are essential in treating patients dying from COVID-19. In Italy, little is known about the impact of COVID-19 on deaths in LTCF and the care provided in HC to COVID-19 patients. AIM: To assess overall and case-specific mortality in 2020 in LTC and HC facilities in comparison to the previous five years (2015-2019). METHODS: We performed a descriptive study using data derived from the Italian national "Cause of Death" registry-managed by the Italian National Institute of Statistics-on deaths occurred in LTC and HC facilities during 2020 and the period 2015-2019. RESULTS: Number of deaths significantly increased in 2020 compared with 2015-2019 in LTCF (83,062 deaths vs. 59,200) and slightly decreased in hospices (38,788 vs. 39,652). COVID-19 caused 12.5% of deaths in LTCF and only 2% in hospices. Other than COVID-19, in 2020, cancer accounted for 77% of all deaths that occurred in HC, while cardiovascular diseases (35.6%) and psychotic and behavioral disorders (10%) were the most common causes of death in LTCF. Overall, 22% of the excess mortality registered in Italy during 2020 is represented by the deaths that occurred in LTCF. DISCUSSION AND CONCLUSION: LTCF were disproportionally affected by COVID-19, while the response to the pandemic in HC was limited. These data can help plan strategies to limit the impact of future epidemics and to better understand residential care response to COVID-19 epidemic.


Subject(s)
COVID-19 , Hospice Care , Hospices , Humans , Aged , Long-Term Care , Pandemics , Italy/epidemiology
3.
J Pain Symptom Manage ; 66(2): 87-92.e3, 2023 Aug.
Article in English | MEDLINE | ID: covidwho-2290467

ABSTRACT

CONTEXT: Written Crisis Standards of Care guidelines have been published federally in the United States for several decades to assisted in planning for a variety of disasters, and planning documents exist in most states. Federal and state crisis planning guidelines, both before and during the early COVID pandemic, focused on saving the most lives. Palliative care (PC) and hospice shortages were exacerbated by the COVID pandemic but recognized late and incompletely. OBJECTIVES: 1) Quantify the number of state crisis standard planning documents that include recognition of potential PC and hospice crisis needs in a pandemic. 2) Assess the range of practical plans in existing state Crisis Standards of Care plans. 3) Outline elements of recommendations from existing guidelines and literature. METHODS: Internet searches for state-based "crisis standards of care" completed and results categorized regarding PC and hospice planning as: 1) absent, 2) mentioned only in relation to critical care triage, 3) described only in general principles, 4) describing potential concrete plans to address PC and hospice needs. RESULTS: Of the 50 states and Washington, DC, 45 states have electronically available "crisis standards of care" or emergency preparedness documents; 35 of these were written or updated since 2020. Only 20 states mention any concrete aspects of planning for potential palliative care or hospice service shortages. Guidelines most often involved alternate care sites, protective equipment, and specialist resources. Visitation policy was rarely mentioned. CONCLUSIONS: Concrete planning for PC and hospice needs in state crisis planning occurs in less than half of state documents, even three years after the start of this pandemic. Failure to address these needs will result in avoidable suffering for patients in a wide range of settings. It is important to identify and address gaps before the next disaster.


Subject(s)
COVID-19 , Hospice Care , Hospices , Humans , United States , Palliative Care/methods , Pandemics
4.
PLoS One ; 18(4): e0283326, 2023.
Article in English | MEDLINE | ID: covidwho-2296864

ABSTRACT

IMPORTANCE: The SARS-CoV-2 pandemic has overwhelmed hospital capacity, prioritizing the need to understand factors associated with type of discharge disposition. OBJECTIVE: Characterization of disposition associated factors following SARS-CoV-2. DESIGN: Retrospective study of SARS-CoV-2 positive patients from March 7th, 2020, to May 4th, 2022, requiring hospitalization. SETTING: Midwest academic health-system. PARTICIPANTS: Patients above the age 18 years admitted with PCR + SARS-CoV-2. INTERVENTION: None. MAIN OUTCOMES: Discharge to home versus PAC (inpatient rehabilitation facility (IRF), skilled-nursing facility (SNF), long-term acute care (LTACH)), or died/hospice while hospitalized (DH). RESULTS: We identified 62,279 SARS-CoV-2 PCR+ patients; 6,248 required hospitalizations, of whom 4611(73.8%) were discharged home, 985 (15.8%) to PAC and 652 (10.4%) died in hospital (DH). Patients discharged to PAC had a higher median age (75.7 years, IQR: 65.6-85.1) compared to those discharged home (57.0 years, IQR: 38.2-69.9), and had longer mean length of stay (LOS) 14.7 days, SD: 14.0) compared to discharge home (5.8 days, SD: 5.9). Older age (RRR:1.04, 95% CI:1.041-1.055), and higher Elixhauser comorbidity index [EI] (RRR:1.19, 95% CI:1.168-1.218) were associated with higher rate of discharge to PAC versus home. Older age (RRR:1.069, 95% CI:1.060-1.077) and higher EI (RRR:1.09, 95% CI:1.071-1.126) were associated with more frequent DH versus home. Blacks, Asians, and Hispanics were less likely to be discharged to PAC (RRR, 0.64 CI 0.47-0.88), (RRR 0.48 CI 0.34-0.67) and (RRR 0.586 CI 0.352-0.975). Having alpha variant was associated with less frequent PAC discharge versus home (RRR 0.589 CI 0.444-780). The relative risks for DH were lower with a higher platelet count 0.998 (CI 0.99-0.99) and albumin levels 0.342 (CI 0.26-0.45), and higher with increased CRP (RRR 1.006 CI 1.004-1.007) and D-Dimer (RRR 1.070 CI 1.039-1.101). Increased albumin had lower risk to PAC discharge (RRR 0.630 CI 0.497-0.798. An increase in D-Dimer (RRR1.033 CI 1.002-1.064) and CRP (RRR1.002 CI1.001-1.004) was associated with higher risk of PAC discharge. A breakthrough (BT) infection was associated with lower likelihood of DH and PAC. CONCLUSION: Older age, higher EI, CRP and D-Dimer are associated with PAC and DH discharges following hospitalization with COVID-19 infection. BT infection reduces the likelihood of being discharged to PAC and DH.


Subject(s)
COVID-19 , Hospices , Humans , Aged , Aged, 80 and over , Adolescent , Patient Discharge , Retrospective Studies , COVID-19/epidemiology , SARS-CoV-2/genetics , Hospitalization , Albumins
5.
Hu Li Za Zhi ; 70(2): 14-19, 2023 Apr.
Article in Chinese | MEDLINE | ID: covidwho-2296751

ABSTRACT

The high infectivity, severity, and mortality of COVID-19 led to the devastating impact this disease has had on people's lives during the pandemic. The related strict infection controls and restrictions affected how palliative and end-of-life care could be discussed with clients and how family members could deal with their grief afterward. However, the provision of concise and accurate information by healthcare providers was found to help ease anxiety and fear during the COVID-19 pandemic. In the post-pandemic era, nurses should actively facilitate, support, advocate for, and coordinate palliative care communications with long-term care facility residents. Thus, the Understanding, Respect, Planning, Expression, Act, Care, and Education (U-R-PEACE) communication strategy is introduced and suggested in this article for this purpose. Palliative care communications should be commenced by nurses as early as possible. Moreover, nurses may help residents optimize their quality of life and death by understanding their and their family members' expectations and preferences, encouraging them to discuss their care plan with doctors, and respecting their decisions. The care goals of achieving a good death and relief of suffering may also be promoted through care that is delivered using a holistic, person/family-centered care approach.


Subject(s)
COVID-19 , Hospice Care , Hospices , Nurses , Humans , Palliative Care , Pandemics , Long-Term Care , Quality of Life , Communication
6.
J Hosp Palliat Nurs ; 25(2): 90-96, 2023 04 01.
Article in English | MEDLINE | ID: covidwho-2266786

ABSTRACT

Although the hospice industry cannot afford to lose professionals to compassion fatigue and burnout, work challenges related to the COVID-19 pandemic potentially place hospice professionals at an increased risk. Reflective debriefing has been recommended to provide emotional support to battle job dissatisfaction, compassion fatigue, and burnout. The purpose of this study was to provide reflective debriefing sessions to hospice professionals and identify common themes reported about their professional and personal experiences during the COVID-19 pandemic. A qualitative descriptive design using focus groups set up as reflective debriefing sessions based on the Gibbs' Reflective Cycle was used. Debriefing sessions were recorded and transcribed for coding, followed by identification of themes. A total of 26 themes emerged from the data collected from the debriefing sessions. A postsurvey found that 96.0% of participants found the debriefing session helpful. Furthermore, 92.3% of participants answered they would like to regularly debrief at their workplace. During the pandemic, hospice professionals are at an increased risk of compassion fatigue and burnout from changes in the work, patient, and person environments caused by the pandemic. To address the unprecedented challenges hospice professionals are facing, it is imperative that employers provide them with emotional support.


Subject(s)
Burnout, Professional , COVID-19 , Compassion Fatigue , Hospice Care , Hospices , Humans , Compassion Fatigue/psychology , Pandemics , Burnout, Professional/psychology
7.
BMC Palliat Care ; 21(1): 159, 2022 Sep 16.
Article in English | MEDLINE | ID: covidwho-2228934

ABSTRACT

BACKGROUND: After-hours support from hospice providers is instrumental to patients with serious illness who choose to remain at home, particularly at end of life. Utilisation of out-of-hours support has been much characterised in terms of frequency and nature of calls, but more needs to be known to inform service customisation and resource allocation to optimise care. To this end, we stratify reasons for using the after-hours helpline according to time sensitivity, and to explore disease and person factors associated with urgent calls. METHOD: Electronic medical records for incoming calls from external parties outside workhours within a large home hospice in Singapore were analysed inductively, to identify patterns and associations along study objectives. Individual code books for caller type and call reasons were created and tested in vivo, and later administered to extracted data. Patients that accessed the helpline were tracked for different outcomes, including hospital admissions and on-call home visits. Logistic regression modelling was performed to categorise call reasons by urgency and to identify disease and person factors associated with time sensitive calls. RESULTS: More than 5,000 calls to the helpline were made over a two-year period (2019-2020), predominantly by family caregivers (88.4%). These were in relation to 2,303 unique patients (38.9% of total patients served). After-hours calls were made an average of 2.3 times by patients across various lengths of service. Only 11.9% of calls were deemed time sensitive or urgent, requiring home visits by on-call staff (4%) or resulting in admission to hospital (7.9%). The majority were managed by primary care teams on the next workday (65.1%) and the remainder sorted during the after-hours call itself (22.3%). Call reasons or presenting issues were classified into two groups according to urgency. Calls in the year 2020, from the younger patient, preferred place of death outside the home, and caller types other than patient or healthcare worker were significantly associated with urgent calls. CONCLUSION: Deeper characterisation of after-hours calls offers possibilities: service redesign for optimal resourcing and customised training for better care. Ultimately, planners, providers, and patients all stand to benefit.


Subject(s)
Hospice Care , Hospices , House Calls , Humans , Singapore , Telephone
8.
Eur J Med Res ; 28(1): 21, 2023 Jan 11.
Article in English | MEDLINE | ID: covidwho-2196462

ABSTRACT

BACKGROUND: We established 1-h and 1-day survival models after terminal extubation to optimize ventilator use and achieve a balance between critical care for COVID-19 and hospice medicine. METHODS: Data were obtained from patients with end-of-life status at terminal extubation from 2015 to 2020. The associations between APACHE II scores and parameters with survival time were analyzed. Parameters with a p-value ≤ 0.2 in univariate analysis were included in multivariate models. Cox proportional hazards regression analysis was used for the multivariate analysis of survival time at 1 h and 1 day. RESULTS: Of the 140 enrolled patients, 76 (54.3%) died within 1 h and 35 (25%) survived beyond 24 h. No spontaneous breathing trial (SBT) within the past 24 h, minute ventilation (MV) ≥ 12 L/min, and APACHE II score ≥ 25 were associated with shorter survival in the 1 h regression model. Lower MV, SpO2 ≥ 96% and SBT were related to longer survival in the 1-day model. Hospice medications did not influence survival time. CONCLUSION: An APACHE II score of ≥ 25 at 1 h and SpO2 ≥ 96% at 1 day were strong predictors of disposition of patients to intensivists. These factors can help to objectively tailor pathways for post-extubation transition and rapidly allocate intensive care unit resources without sacrificing the quality of palliative care in the era of COVID-19. Trial registration They study was retrospectively registered. IRB No.: 202101929B0.


Subject(s)
COVID-19 , Hospices , Humans , Airway Extubation , Pandemics , COVID-19/epidemiology , Intensive Care Units , Critical Care , Respiration, Artificial
9.
Front Public Health ; 10: 927874, 2022.
Article in English | MEDLINE | ID: covidwho-2080283

ABSTRACT

Background: Hospice and palliative care (HPC) aims to improve end-of-life quality and has received much more attention through the lens of an aging population in the midst of the coronavirus disease pandemic. However, several barriers remain in China due to a lack of professional HPC providers with positive behavioral intentions. Therefore, we conducted an original study introducing machine learning to explore individual behavioral intentions and detect factors of enablers of, and barriers to, excavating potential human resources and improving HPC accessibility. Methods: A cross-sectional study was designed to investigate healthcare providers' behavioral intentions, knowledge, attitudes, and practices in hospice care (KAPHC) with an indigenized KAPHC scale. Binary Logistic Regression and Random Forest Classifier (RFC) were performed to model impacting and predict individual behavioral intentions. Results: The RFC showed high sensitivity (accuracy = 0.75; F1 score = 0.84; recall = 0.94). Attitude could directly or indirectly improve work enthusiasm and is the most efficient approach to reveal behavioral intentions. Continuous practice could also improve individual confidence and willingness to provide HPC. In addition, scientific knowledge and related skills were the foundation of implementing HPC. Conclusion: Individual behavioral intention is crucial for improving HPC accessibility, particularly at the initial stage. A well-trained RFC can help estimate individual behavioral intentions to organize a productive team and promote additional policies.


Subject(s)
Hospice Care , Hospices , Aged , Cross-Sectional Studies , Humans , Intention , Palliative Care , Supervised Machine Learning
10.
BMC Palliat Care ; 21(1): 176, 2022 Oct 10.
Article in English | MEDLINE | ID: covidwho-2064782

ABSTRACT

BACKGROUND: Independent charitably funded hospices have been an important element of the UK healthcare response to the COVID-19 pandemic. Hospices usually have different funding streams, procurement processes, and governance arrangements compared to NHS provision, which may affect their experiences during the COVID-19 pandemic. The aim of this study is to understand the challenges faced by charitably funded hospices during the COVID-19 pandemic. METHODS: Eligible Organisations providing specialist palliative or hospice care completed the online CovPall survey (2020) which explored their response to the COVID-19 pandemic. Eligible organisations were then purposively selected to participate in interviews as part of qualitative case studies (2020-21) to understand challenges in more depth. Free-text responses from the survey were analysed using content analysis and were categorised accordingly. These categorisations were used a priori for a reflexive thematic analysis of interview data. RESULTS: 143 UK independent charitably funded hospices completed the online CovPall survey. Five hospices subsequently participated in qualitative case studies (n = 24 staff interviews). Key themes include: vulnerabilities of funding; infection control during patient care; and bereavement support provision. Interviewees discussed the fragility of income due to fundraising events stopping; the difficulties of providing care to COVID-19 and non-COVID-19 patients within relatively small organisations; and challenges with maintaining the quality of bereavement services. CONCLUSION: Some unique care and provision challenges during the COVID-19 pandemic were highlighted by charitably funded hospices. Funding core services charitably and independently may affect their ability to respond to pandemics, or scenarios where resources are unexpectedly insufficient.


Subject(s)
COVID-19 , Hospice Care , Hospices , Humans , Palliative Care/methods , Pandemics
11.
BMC Palliat Care ; 21(1): 170, 2022 Oct 05.
Article in English | MEDLINE | ID: covidwho-2064780

ABSTRACT

INTRODUCTION: Social support is described by patients and other stakeholders to be a valuable component of palliative day care. Less is known about the range of hospice services that have been used in practice that facilitate social support. An online survey aimed to gain an overview of all hospice day services that facilitated social support for adults outside of their own homes. METHODS: An online survey was distributed via email to people involved in managing hospice day services. Questions were asked on hospice characteristics, including staff and volunteer roles. Respondents were asked to identify services they felt offered social support to patients. Data collection took place between August 2017 and May 2018. RESULTS: Responses were received from 103 hospices in the UK and ROI (response rate 49.5%). Results provide an overview of hospice day and outpatient services that offer social support to patients. These are: multi-component interventions, activity groups, formal support groups, befriending, and informal social activities. Multi-component interventions, such as palliative day care, were the most commonly reported. Their stated aims tend to focus on clinical aspects, but many survey respondents considered these multicomponent interventions to be the 'most social' service at their hospice. The survey also identified a huge variety of activity groups, as well as formal therapeutic support groups. Informal 'social-only' activities were present, but less common. Over a third of all the services were described as 'drop in'. Most responding hospices did not routinely use patient reported outcome measures in their 'most social' services. CONCLUSIONS: The survey documents hospice activity in facilitating social support to be diverse and evolving. At the time of data collection, many hospices offered multiple different services by which a patient might obtain social support outside of their own home and in the presence of other patients.


Subject(s)
Hospice Care , Hospices , Adult , Humans , Ireland , Palliative Care/methods , Pandemics , Social Support , Surveys and Questionnaires , United Kingdom
12.
Nurs Adm Q ; 46(4): 309-315, 2022.
Article in English | MEDLINE | ID: covidwho-2037584

ABSTRACT

The number of persons with serious illness in America has dramatically increased over the last half decade, while the cost for health care quadrupled. The trajectory of these chronic conditions can mean declining health, frequent emergency department visits and more hospitalizations, driving up health care costs, and reducing quality of life. Palliative care, a viable solution to reducing disease burden, improving quality of life, and decreasing costs, has been offered in hospitals for many years and is now a standard of care and practice. Palliative care can be provided while concomitantly offering disease-targeted treatment. Home-based and community-based palliative care models offer new and innovative avenues for the provision of palliative care outside the hospital walls. Definitions to differentiate between palliative care, hospice, and long-term services and support will be presented. How to make the business case for home-based or community-based palliative care will be made, with insights, resources, and tools for calculating the return on investment. The role and competencies for palliative care nurse leaders will be explored.


Subject(s)
Hospices , Palliative Care , Emergency Service, Hospital , Health Care Costs , Humans , Quality of Life
14.
J Soc Work End Life Palliat Care ; 18(3): 203-215, 2022.
Article in English | MEDLINE | ID: covidwho-1967788

ABSTRACT

The COVID-19 pandemic has impacted the healthcare sector in many ways. Social safety measures in hospices in Singapore include cessation of non-essential services such as volunteering. Literature shows that volunteers are valuable in enhancing the quality of life of patients in receiving hospice services. They provide patients with needed companionship, and meaningful activities such as bringing their pets into the wards in animal-assisted activities. The rise of telehealth during the COVID-19 pandemic brought an increasing interest in virtual volunteering such as virtual animal-assisted activities (VAAA). However, there is currently a lack of literature on virtual volunteering as its increased demand is a recent trend. Virtual volunteering in a hospice in Singapore is described through two retrospective case studies of VAAA. These case studies showed that a therapeutic alliance can be effectively built via virtual platforms. Benefits of virtual volunteering include enabling continued service delivery and increased comfort for some patients as virtual interactions can be less intimidating as compared to interacting with an animal in real life. Virtual volunteering may be considered to complement face-to-face volunteering in end-of-life care as part of normal practice.


Subject(s)
COVID-19 , Hospices , Animals , Humans , Pandemics , Quality of Life , Retrospective Studies , Singapore , Volunteers
15.
BMC Palliat Care ; 21(1): 94, 2022 Jun 01.
Article in English | MEDLINE | ID: covidwho-1951174

ABSTRACT

BACKGROUND: Globally COVID-19 has had a profound impact on the provision of healthcare, including palliative care. However, there is little evidence about the impact of COVID-19 on delivery of out-of-hours specialist palliative care services in the United Kingdom. The aim of the study is to investigate the impact of the COVID-19 pandemic on the delivery of out-of-hours community-based palliative care services. METHODS: A national online census survey of managers of adult hospices in the United Kingdom was undertaken. Survey were emailed to managers of adult hospices (n = 150) who provided out-of-hours community palliative care services. Fifteen questions related specifically to the impact of COVID-19. Quantitative data were analysed using descriptive statistics and qualitative data were analysed using descriptive content analysis. RESULTS: Eighty-one responses to the survey were returned (54% response rate); 59 were complete of which 47 contained COVID-19 data. Findings indicated that COVID-19 impacted on out-of-hours community-based palliative care. To meet increased patient need, hospices reconfigured services; redeployed staff; and introduced new policies and procedures to minimize virus transmission. Lack of integration between charitably and state funded palliative care providers was reported. The interconnected issues of the use and availability of Personal Protective Equipment (n = 21) and infection control screening (n = 12) resulted in changes in nursing practices due to fear of contagion for patients, carers and staff. CONCLUSIONS: Survey findings suggest that due to increased demand for community palliative care services, hospices had to rapidly adapt and reconfigure services. Even though this response to the pandemic led to some service improvements, in the main, out-of-hours service reconfiguration resulted in challenges for hospices, including workforce issues, and availability of resources such as Personal Protective Equipment. These challenges were exacerbated by lack of integration with wider healthcare services. More research is required to fully understand the implications of such changes on the quality of care provided.


Subject(s)
After-Hours Care , COVID-19 , Hospice Care , Hospices , Adult , COVID-19/epidemiology , Humans , Pandemics
16.
Home Healthc Now ; 40(4): 229, 2022.
Article in English | MEDLINE | ID: covidwho-1948588

Subject(s)
Hospice Care , Hospices , Humans
17.
Am Surg ; 88(8): 2075-2076, 2022 08.
Article in English | MEDLINE | ID: covidwho-1932933
18.
BMJ Open ; 12(7): e060253, 2022 07 12.
Article in English | MEDLINE | ID: covidwho-1932754

ABSTRACT

INTRODUCTION: Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is a UK advance care planning (ACP) initiative aiming to standardise the process of creating personalised recommendations for a person's clinical care in a future emergency and therefore improve person-focused care. Implementation of the ReSPECT process across a large geographical area, involving both community and secondary care, has not previously been studied. In particular, it not known whether such implementation is associated with any change in outcomes for those patients with a ReSPECT form.Implementation of ReSPECT in the Bristol, North Somerset and South Gloucestershire (BNSSG) Clinical Commissioning Group (CCG) area overlapped with the first UK COVID-19 wave. It is unclear what impact the pandemic had on the implementation of ReSPECT and if this affected the type of patients who underwent the ReSPECT process, such as those with specific diagnoses or living in care homes. Patterns of clinical recommendations documented on ReSPECT forms during the first year of its implementation may also have changed, particularly with reference to the pandemic.To determine the equity and potential benefits of implementation of the ReSPECT form process in BNSSG and contribute to the ACP evidence base, this study will describe the characteristics of patients in the BNSSG area who had a completed ReSPECT form recorded in their primary care medical records before, during and after the first wave of the COVID-19 pandemic; describe the content of ReSPECT forms; and analyse outcomes for those patients who died with a ReSPECT form. METHODS AND ANALYSIS: We will perform an observational retrospective study on data, collected from October 2019 for 12 months. Data will be exported from the CCG Public Health Management data resource, a pseudonymised database linking data from organisations providing health and social care to people across BNSSG. Descriptive statistics of sociodemographic and health-related variables for those who completed the ReSPECT process with a clinician and had a documented ReSPECT form in their notes, in addition to their ReSPECT form responses, will be compared between before, during and after first COVID-19 wave groups. Additionally, routinely collected outcomes for patients who died in our study period will be compared between those who completed the ReSPECT process with a community clinician, hospital clinician or not at all. These include emergency department attendances, emergency hospital admissions, community nurse home visits, hospice referrals, anticipatory medication prescribing, place of death and if the patient died in preferred place of death. ETHICS AND DISSEMINATION: Approval has been obtained from a National Health Service Research Ethics Committee (20/YH/0185). Findings will be disseminated to policy decision-makers, care providers and the public through scientific meetings and peer-reviewed publication.


Subject(s)
COVID-19 , Emergency Medical Services , Hospices , COVID-19/epidemiology , Humans , Observational Studies as Topic , Pandemics , Retrospective Studies , State Medicine
19.
Ann Palliat Med ; 11(7): 2302-2313, 2022 Jul.
Article in English | MEDLINE | ID: covidwho-1841762

ABSTRACT

BACKGROUND: Telehealth was expanded worldwide during the COVID-19 pandemic to deliver essential care remotely to patients, including those receiving palliative care. Bipartisan groups of politicians in the United States call for continuing the expanded Medicare coverage of telehealth services beyond the pandemic period. The aim was to understand telehealth's benefits and risks to hospice and palliative care patients and their families. METHODS: We conducted a cross-sectional survey of 595 caregivers of seriously ill patients and interviewed 25 hospice leaders across the United States. We used multiple linear regression to analyze the survey data and qualitative methods to determine themes from the interview data. RESULTS: Our survey showed that a good internet connection, better access to video, and the patient being younger than 65 years old were associated with greater satisfaction with telehealth. The hospice leader interviews highlighted that telehealth can enhance or detract from quality care, depending on the function; confusion over telehealth policies and concern for abuse exists; and telehealth during the pandemic has spurred on technology-enabled innovation and improvements, especially for resource-constrained hospice and palliative care organizations. CONCLUSIONS: Telehealth used during the pandemic showed that it may work for certain hospice and palliative care services. As telehealth coverage expands, it is important to address its risks and shortcomings upfront. When designed and implemented with the patient and equity in mind, telehealth has the potential to improve access to hospice and palliative care for all.


Subject(s)
COVID-19 , Hospices , Telemedicine , Aged , COVID-19/epidemiology , Caregivers , Cross-Sectional Studies , Humans , Medicare , Palliative Care/methods , Pandemics , Telemedicine/methods , United States
20.
Epidemiol Prev ; 46(1-2): 92-99, 2022.
Article in Italian | MEDLINE | ID: covidwho-1771984

ABSTRACT

BACKGROUND: Health Information Systems (HIS) play a strategic role in the development of community healthcare services, a field still underdeveloped in Italy as shown by the COVID-19 pandemic, and their use for epidemiological purposes is increasing over the years. However, some general critical issues have been reported concerning national community health information systems, but no detailed study was found after a non-systematic review in Medline database and institutional websites. OBJECTIVES: to assess uniformity and comparability of health information collected by the national health information Systems for Home Care (SIAD), Nursing Homes (FAR), and Hospices (HOS) in Italy, three healthcare settings sharing patients with common conditions and healthcare needs. METHODS: information was gathered from current Technical Regulations Papers of the Italian Health Ministry. All variables of the three Information Systems were ordered on the basis of the characteristics provided by the ministerial documents into a single grouping model created for the purpose and their distribution compared among and between the Systems. According to the grouping model, the variables were divided in two main groups: System Variables for administrative, bill, and identification-personal data and the Pathway Variables for patient's conditions and provided healthcare data. Common information content variables among all systems and between two of them were then identified, highlighting those with also identical terminology and allowed values. On the basis of the percentages of common and identical variables, uniformity in content and terminology was then calculated among all systems and between two of them. Besides, levels of content and terminology agreement have been calculated with Cohen's K matching the three Systems in all possible combinations of pairs. RESULTS: there are 70 variables in SIAD, 45 variables in FAR, and 34 in HOS. System variables are nearly the half in FAR and HOS, 22 (48.9%) and 17 (50.0%) variables, respectively. Pathway variables are prevalent only in SIAD, with 55 variables (78.6%). Only SIAD and HOS use ICD-9-CM, with 2 (2.8%) and 9 (26.5%) variables, respectively. The three Systems share 18 common variables, with other 16 common between just two of them. Considering the common variables, the total number of variables used by all the Systems is 97, with 23 System variables (23.7%) and 74 Pathway variables (76.3%). Overall, content uniformity among the three Systems is 18.5%, but becomes 60.9% considering only the System variables and 5.4% for the Pathway variables, with respectively 14 and 4 common variables. Among the common variables, 11 have the same denomination and allowed values, with an overall terminological uniformity of 11.3%. Being all of them System variables, no terminological uniformity has been found among the three Systems.The level of content agreement was fair for the couple FAR-HOS (K Cohen 0.26), but null for HOS-SIAD and SIAD-FAR (K Cohen -0.20 and <0.01). Null was also the level of terminological agreement in all the possible pairs of matched systems (K Cohen all negative). CONCLUSIONS: content and terminology uniformity of National Health Information Systems in Italy for Home Care, Nursing Homes, and Hospices has been found to be poor, with little reference to standardised classification systems and a scarce level of comparability of the information gathered in the three healthcare settings, although similarity in patients' characteristics and provided health services. Data comparability among them is mainly limited to administrative and identification-personal information, with little possibility of comparing information on patients' conditions and provided healthcare in the three settings. This scarce uniformity might undermine the contribution of national Health Information Systems in the development of community healthcare services in Italy and limit the potential of epidemiological research in this area. Also in the light of the establishment of new national Health Information Systems for Primary Care and Community Hospitals, a methodological reassessment of languages, codes, and evaluation tools used by community health services and information systems is needed.


Subject(s)
COVID-19 , Health Information Systems , Home Care Services , Hospices , Nursing Care , COVID-19/epidemiology , Humans , Italy , Nursing Homes , Pandemics
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