Understanding the role and deployment of volunteers within specialist palliative care services and organisations as they have adjusted to the COVID-19 pandemic: A multi-national EAPC volunteer taskforce survey.

BACKGROUND: Early indications were of a major decline in specialist palliative care volunteer numbers during COVID-19. It is important that ongoing deployment and role of volunteers is understood, given the dependence of many palliative care services on volunteers for quality care provision. AIM: To understand the roles and deployment of volunteers in specialist palliative care services as they have adjusted to the impact of COVID-19. DESIGN: Observational multi-national study, using a cross-sectional online survey with closed and free-text option questions. Disseminated via social media, palliative care networks and key collaborators from May to July 2021. SETTING/PARTICIPANTS: Any specialist palliative care setting in any country, including hospices, day hospices, hospital based or community teams. The person responsible for managing the deployment of volunteers was invited to complete the survey. RESULTS: Valid responses were received from 304 organisations (35 countries, 80.3% Europe). Most cared for adults only (60.9%), provided in-patient care (62.2%) and were non-profit (62.5%). 47.0% had cared for people with COVID-19. 47.7% changed the way they deployed volunteers; the mean number of active volunteers dropped from 203 per organisation to 33, and 70.7% reported a decrease in volunteers in direct patient/family facing roles. There was a shift to younger volunteers. 50.6% said this drop impacted care provision, increasing staff workload and pressure, decreasing patient support, and increasing patient isolation and loneliness. CONCLUSION: The sustained reduction in volunteer deployment has impacted the provision of specialist palliative care. Urgent consideration must be given to the future of volunteering including virtual modes of delivery, micro-volunteering, and appealing to a younger demographic.

Caring for Terminally Ill Clients in Hospices and Social Services Facilities during the Peak of the Covid-19 Pandemic, with a Focus on the Experience of Relatives Regarding This Situation

Background: The COVID-19 pandemic is one of the worst public health crises in a century, with an expected death toll of several million worldwide and an even greater number of bereaved. Methods: We conducted qualitative research in the form of semi- structured interviews, using a consensus qualitative research method. We approached 16 participants who had a relative die from COVID-19 in hospice care or in a social services facility in Slovakia, or whose relative died during the peak of the pandemic of another lethal disease. Results: By analysing the interviews with the participants, we developed six main domains that formed the core themes of the testimonies, namely: the course of the disease, experiencing placement during the anti-pandemic measures, the attitude of the staff, experiences of other family members, the last moments of life, and experiencing the grieving period.The main difference in comparing the testimonies of relatives who had a family member in hospice and those who had a family member in a social services facility was the perception of communication by health professionals.Relatives of the deceased in social services facilities subjectively described communication and the transmission of health information as having been inadequate, while relatives of the deceased in hospices reported a positive experience and no negative comments were observed. Another difference was that relatives with family members in hospices were more prepared and reconciled with the death of their family member compared to relatives with a family member in a social services facility. Conclusion: Exploring the experience of bereaved relatives provides valuable insight into how families coped and adapted when their family member was dying during the COVID-19 pandemic. This can help to better know and understand the needs of patients and their relatives in health and social care facilities, as well as the needs of the bereaved.

Barriers to participation in tourism linked respite care.

Successive interventions designed to curb the spread of COVID-19 have all served to exacerbate the demands placed upon informal carers, a population indispensable to health care systems. The need for breaks from caring has never been so pronounced. This paper adopts, and extends, the theory of hierarchical leisure constraints to better understand barriers to tourism respite participation. Lived experiences are collected via story-telling techniques (n = 157) from carers taking trips of one night or more away during times of palliative and end-of-life care. Three cross-cutting constraints are emergent in the data: awareness (knowing); access (doing); and anxiety (feeling). Negotiation strategies are suggested, hierarchical implications questioned and the opportunity to explore a temporal dimension to tourism constraints in future research signalled.

The Impact of the Covid-19 Pandemic on Palliative Care in Inpatient Hospices in Slovakia

Backround/(Aim): Palliative care is an important component of health care in pandemics. Global pandemics, which includes COVID-19, are leading to a sharp increase demand for health services, including palliative care. To examine preparedness for, and the impact of COVID-19 pandemic on hospices in Slovakia and to inform other countries of the Slovakian response. Methods/(Design, Setting): Telephone survey of hospices in Slovakia based on a semi-structured questionnaire. The research sample consisted of 11 inpatient hospices in the Slovak Republic, of which 10 of them participated in the research. Results: All hospices immediately implemented changes to existing procedures, developed their own written guidelines and policies for working in times of emergency declared on the basis of a rapidly spreading virus. The biggest problems were the lack of staff guidelines on crisis management and how hospices should work in times of emergency and the lack of personal protective equipment. The results indicate the necessity for the cooperation of the entire interdisciplinary team of hospice staff, with social workers and psychologists proving to be an important part of the interdisciplinary team. Conclusion: Hospices offer comprehensive care to patients in the terminal stages of various diseases and they are capable of responding flexibly and rapidly to COVID-19 pandemic. It is important that the government and the entire health sector of the Slovak Republic recognize the need of palliative care during the COVID-19 pandemic and seek to ensure the protection and full integration of hospices in the care of end-stage patients during a global pandemic.

Active garden therapy for the elderly and people with disabilities

Garden therapy has been used in the world medical practice for many decades. There are many examples where human interaction with plants has a positive impact or facilitates the lives of various segments and groups of society: children, youth, elderly people, with mental health problems, people with disabilities, crime victims, patients with cancer and Alzheimer’s disease, mental health problems, drug addicts and alcoholics, combatants, victims of military or terrorist acts, etc. Garden therapy is the process of using plants and the garden to improve well-being through the effects on the mind, body and soul. Garden therapy combines gardening and rehabilitation and is a synthesis of landscape design, medicine and psychology. It can help work with different target groups: in hospitals, nursing homes, rehabilitation and cancer centers, hospices, as well as other medical and residential complexes. Despite this, garden therapy is still not widespread in Ukraine and requires wider development. This is due to the general set of social and health problems, as well as regional problems of modern times, including the post-Chernobyl factor, the mass factor of post-traumatic stress disorders among the affected population of the temporarily occupied territories and the contingent of ATO participants. Undoubtedly, the urgent task today is to develop garden therapy programs for recovery from illness and combating the stressful effects of prolonged self-isolation during quarantine activities related to the COVID-19 pandemic. The article considers an example of creating a location for active garden therapy for visitors to the Center for medical and social rehabilitation services in Melitopol, Zaporozhia region.

Administration of systemic steroids during hospitalization does not improve the clinical outcome in patients with COVID-19. (COVID-19 dedicated issue.)

The systemic steroids are recommended for cases with refractory septic shock or severe acute respiratory distress syndrome. Although systemic glucocorticoids help to resolve inflammation and treat cytokine storm, the time course for steroid use and which patients benefit from using systemic corticosteroids is unclear. In this study, we aimed to evaluate the therapeutic effect of corticosteroids in COVID-19 patients. Electronic medical records of hospitalized patients (n=7,980) from 178 hospitals across United States for confirmed COVID-19 between January 1st 2020 and May 8th 2020 were reviewed. Of the 7,980 patients, 3,951 (49.5%) were female and 4,029 (50.5%) were male. The mean age was 57.4 .. 19 years. Fifteen percent (n=1,219) died in hospital or were discharged to hospice care. Seventy-two percent (n=5,774) required non-ICU level of care, while 28% (n=2,206) of patients required ICU, and of those 1,157 (14.5%) needed ventilator support. The mean length of stay in the hospital was 6 days (range 0 - 84 days). Fourteen percent (n=1111) of patients received at least one dose of systemic steroids during hospitalization. Sixty precent of those had ICU level of care with 435 (39%) requiring ventilator support. Overall, the use of corticosteroids was associated with increased mortality (OR=1.273;p=0.0160) and 3.53 days longer hospital stay (p<0.0001). The corticosteroid exposed group was also noted to progress to a higher level of care and have longer time on a ventilator when compared with the patients who did not receive steroids. The length of hospital stay and mortality was higher especially in severe/critical patients. Based on these results, we recommend cautious use of corticosteroids in COVID-19. The etiology behind this association is still unclear and presents an area for future research.

Conscientious objections during COVID-19 pandemic. (Special Issue: The epidemiologist and the pandemic.)

Globally evolving COVID-19 pandemic has raised major questions which may have catastrophic implications like absence of universal facemask use, misunderstanding implications of SARS-CoV-2 test results, ventilator related mortality, cytokine reduction technology and anti-viral treatments being in their infancy still, failure to update advanced healthcare directives during pandemic, and overlooked home hospice options for COVID-19 patients when terminally ill. Moreover, there are inquisitive and interesting avenues worth exploring and innovating during COVID19 pandemic like "cold" viruses such as SARS-CoV-2 uniquely choosing airways which normally and naturally have temperatures much lower than core body temperatures, potential therapeutic role (if any) of facemask usage, potential role of natural disinfection by sunlight and its component ultraviolet-C which is used for artificial cleansing, potential bimodal immune response against SARS-CoV-2, and exploration into BCG vaccination based non-specific protection against intracellular pathogens with SARS-CoV-2 itself being an intracellular pathogen. Summarily, I am praying that the natural delays in establishing reproducible evidence during COVID-19 pandemic should not turn the humanity as we know today into a historical evidence.

The Lived Experience of Physical Separation for Hospice Patients and Families amid COVID-19.

CONTEXT: Many hospice patients were physically separated from family members and healthcare professionals during the early COVID-19 pandemic. OBJECTIVES: Researchers sought to describe the lived experience of physical separation for hospice patients and family caregivers who adhered to public health guidelines intended to limit the transmission of COVID-19 in the spring of 2020. METHODS: Researchers performed a secondary analysis of qualitative data collected during a multi-site clinical trial of an intervention that incorporated family caregivers into care plan reviews during biweekly hospice interdisciplinary team meetings. Twenty-eight adult family caregivers of hospice patients with cancer participated in at least one care plan review between March 7, 2020 and June 10, 2020. The final analytic dataset included the transcribed content of 60 care plan reviews, which were analyzed via reflexive thematic analysis. RESULTS: Hospice patients and their family caregivers experienced physical separation as interrupted care that resulted in the potential for unmet informational, functional, and social and emotional needs. Connection strategies employed to adapt to care interruptions and address patient and caregiver needs were not consistently effective. CONCLUSION: Inclusive, innovative connection strategies are needed to ensure that high-quality end-of-life care is provided to hospice patients and their family caregivers when physical presence must be limited.

Change in Activity of Palliative Care Services during the Covid-19 Pandemic: A Multinational Survey (CovPall).

Objectives: To identify factors associated with palliative care services being busier during Covid-19. Methods: Cross-sectional online survey of UK palliative care services (April to July 2020) (CovPall). Ethical approval was received from King's College London Research Ethics committee (LRS-19/20-18541). The primary outcome was change in busyness (five-point ordinal scale). Ordinal logistic regression investigated factors associated with the primary outcome. Results: Of 277 responses, 71 (26%) reported being a lot more busy, 62 (22%) slightly more, 53 (19%) about the same, 50 (18%) slightly less, and 28 (10%) much less busy. Increased business was associated with homecare services (odds ratio [OR] 1.93, 95% confidence interval [CI] 1.15-3.25), nursing care at home (OR 3.24, 95% CI 1.70-6.19), publicly managed services (OR 2.20, 95% CI 1.11-4.34), Covid-19 cases (OR 1.01, 95% CI 1.00-1.01), and staff shortages (OR 2.71, 95% CI 1.64-4.48). Conclusion: Services providing community care, and publicly managed services, may have been better able to respond to escalating needs during Covid-19. This has potential implications for both service delivery and funding models.

Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data.

BACKGROUND: Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients' symptom self-management, independence and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. AIM: To understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision. DESIGN: Cross-sectional national online survey. SETTING/PARTICIPANTS: Rehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020. FINDINGS: 61 completed responses (England, n = 55; Scotland, n = 4; Wales, n = 1; and Northern Ireland, n = 1) most frequently from services based in hospices (56/61, 92%) providing adult rehabilitation. Most services (55/61, 90%) reported rehabilitation provision becoming remote during Covid-19 and half reported reduced caseloads. Rehabilitation teams frequently had staff members on sick-leave with suspected/confirmed Covid-19 (27/61, 44%), redeployed to other services/organisations (25/61, 41%) or furloughed (15/61, 26%). Free text responses were constructed into four themes: (i) fluctuating shared spaces; (ii) remote and digitised rehabilitation offer; (iii) capacity to provide and participate in rehabilitation; (iv) Covid-19 as a springboard for positive change. These represent how rehabilitation services contracted, reconfigured, and were redirected to more remote modes of delivery, and how this affected the capacity of clinicians and patients to participate in rehabilitation. CONCLUSION: This study demonstrates how changes in provision of rehabilitation during the pandemic could act as a springboard for positive changes. Hybrid models of rehabilitation have the potential to expand the equity of access and reach of rehabilitation within specialist palliative care.

Hospice Emergency Planning and COVID-19.

Objectives: Centers for Medicare and Medicaid Services requirements for Emergency Preparedness Planning (EPP) by hospice organizations significantly increased in 2017. This study seeks to assess the involvement of various hospice personnel in EPP before and since the onset of the novel coronavirus disease COVID-19 pandemic. Methods: A link to an anonymous online survey was sent to members of the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association, targeting members involved in hospice care in the United States. A descriptive analysis of the data was performed. Results: Prior to the pandemic, 39.8% of respondents were "moderately" or "very" involved with the development and revisions of the Emergency Preparedness Plan. Since the beginning of the pandemic, this increased to 59%, which largely occurred among physicians. Clinical Nurse and Nurse Practitioner involvement in development/revisions remained low. Approximately 30% of respondents desired more involvement across the areas of EPP. Conclusion: The involvement of personnel of various disciplines is varied and the involvement of physicians appears to have increased with the onset of the COVID-19 pandemic. A notable portion of personnel desired more involvement across all aspects of EPP. More research is needed in this important but little-understood area.

Understanding and addressing challenges for advance care planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services.

BACKGROUND: Specialist palliative care services play an important role in conducting advance care planning during COVID-19. Little is known about the challenges to advance care planning in this context, or the changes services made to adapt. AIM: Describe the challenges that UK specialist palliative care services experienced regarding advance care planning during COVID-19 and changes made to support timely conversations. DESIGN: Online survey of UK palliative/hospice services' response to COVID-19. Closed-ended responses are reported descriptively. Open-ended responses were analysed using a thematic Framework approach using the Social Ecological Model to understand challenges. RESPONDENTS: Two hundred and seventy-seven services. RESULTS: More direct advance care planning was provided by 38% of services, and 59% provided more support to others. Some challenges to advance care planning pre-dated the pandemic, whilst others were specific to/exacerbated by COVID-19. Challenges are demonstrated through six themes: complex decision making in the face of a new infectious disease; maintaining a personalised approach; COVID-19-specific communication difficulties; workload and pressure; sharing information; and national context of fear and uncertainty. Two themes demonstrate changes made to support: adapting local processes and adapting local structures. CONCLUSIONS: Professionals and healthcare providers need to ensure advance care planning is individualised by tailoring it to the values, priorities, and ethnic/cultural/religious context of each person. Policymakers need to consider how high-quality advance care planning can be resourced as a part of standard healthcare ahead of future pandemic waves. In facilitating this, we provide questions to consider at each level of the Social Ecological Model.

The Challenges of Caring for People Dying From COVID-19: A Multinational, Observational Study (CovPall).

CONTEXT: Systematic data on the care of people dying with COVID-19 are scarce. OBJECTIVES: To understand the response of and challenges faced by palliative care services during the COVID-19 pandemic, and identify associated factors. METHODS: We surveyed palliative care and hospice services, contacted via relevant organizations. Multivariable logistic regression identified associations with challenges. Content analysis explored free text responses. RESULTS: A total of 458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world; 81% cared for patients with suspected or confirmed COVID-19, 77% had staff with suspected or confirmed COVID-19; 48% reported shortages of Personal Protective Equipment (PPE), 40% staff shortages, 24% medicines shortages, 14% shortages of other equipment. Services provided direct care and education in symptom management and communication; 91% changed how they worked. Care often shifted to increased community and hospital care, with fewer admissions to inpatient palliative care units. Factors associated with increased odds of PPE shortages were: charity rather than public management (OR 3.07, 95% CI 1.81-5.20), inpatient palliative care unit rather than other settings (OR 2.34, 95% CI 1.46-3.75). Being outside the UK was associated with lower odds of staff shortages (OR 0.44, 95% CI 0.26-0.76). Staff described increased workload, concerns for their colleagues who were ill, whilst expending time struggling to get essential equipment and medicines, perceiving they were not a front-line service. CONCLUSION: Palliative care services were often overwhelmed, yet felt ignored in the COVID-19 response. Palliative care needs better integration with health care systems when planning and responding to future epidemics/pandemics.

COVID-19 Pandemic Impacts on U.S. Hospice Agencies: A National Survey of Hospice Nurses and Physicians.

BACKGROUND: Hospice agencies face unique challenges during times of widespread public health emergencies. The pandemic of novel coronavirus disease COVID-19 is widely affecting global healthcare systems. AIM: This study assesses effects of the COVID-19 pandemic on U.S. hospice agencies, staff, and patients as reported by hospice agency staff. DESIGN: An anonymous electronic survey was developed. Free-text comments were assessed for impacts on hospice agencies, staff, and patients and their families. SETTING/PARTICIPANTS: The target audience was members of the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association who self-identified as being active with hospice agencies in the United States. RESULTS: Reported impacts include inadequate supplies of personal protective equipment, changes in hospice services, and decreased access by hospice personnel to patients in long term care facilities. Flow of patients through hospice care settings was impeded. Agencies experienced changes in workforce availability and increased emotional support needs of staff. Patient and families experienced increased bereavement needs. Nearly one-third of respondents reported negative effects on patient outcomes, such as inadequate symptom management and negative psychosocial effects. CONCLUSION: Respondents indicate that the COVID-19 pandemic had negative effects on both hospice patient care and hospice agency functioning. Hospice agencies appear to face challenges unique among U.S. healthcare agencies due to their service delivery model and focus on interdisciplinary care. There is need for further exploration of the effects that the COVID-19 pandemic has on hospice agencies in order to improve care for their patient population during public health emergencies.

Visiting Policies of Hospice Wards during the COVID-19 Pandemic: An Environmental Scan in Taiwan.

During an epidemic, almost all healthcare facilities restrict the visiting of patients to prevent disease transmission. For hospices with terminally ill patients, the trade-off between compassion and infection control becomes a difficult decision. This study aimed to survey the changes in visiting policy for all 76 hospice wards in Taiwan during the COVID-19 pandemic in March 2020. The altered visiting policies were assessed by the number of visitors per patient allowed at one time, the daily number of visiting slots, the number of hours open daily, and requisites for hospice ward entry. The differences in visiting policies between hospice wards and ordinary wards were also investigated. Data were collected by reviewing the official website of each hospital and were supplemented by phone calls in cases where no information was posted on the website. One quarter (n = 20) of hospice wards had different visiting policies to those of ordinary wards in the same hospital. Only one hospice ward operated an open policy, and in contrast, nine (11.8%) stopped visits entirely. Among the 67 hospice wards that allowed visiting, at most, two visitors at one time per patient were allowed in 46 (68.6%), one visiting time daily was allowed in 32 (47.8%), one hour of visiting per day was allowed in 29 (43.3%), and checking of identity and travel history was carried out in 12 wards (17.9%). During the COVID-19 pandemic, nearly all hospice wards in Taiwan changed their visiting policies, but the degree of restriction varied. Further studies could measure the impacts of visiting policy changes on patients and healthcare professionals.

Response and role of palliative care during the COVID-19 pandemic: A national telephone survey of hospices in Italy.

BACKGROUND: Palliative care is an important component of health care in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making. AIM: To examine preparedness for, and impact of, the COVID-19 pandemic on hospices in Italy to inform the response in other countries. DESIGN: Cross-sectional telephone survey, in March 2020. SETTING: Italian hospices, purposively sampled according to COVID-19 regional prevalence categorised as high (>25), medium (15-25) and low prevalence (<15) COVID-19 cases per 100,000 inhabitants. A brief questionnaire was developed to guide the interviews. Analysis was descriptive. RESULTS: Seven high, five medium and four low prevalence hospices provided data. Two high prevalence hospices had experienced COVID-19 cases among both patients and staff. All hospices had implemented policy changes, and several had rapidly implemented changes in practice including transfer of staff from inpatient to community settings, change in admission criteria and daily telephone support for families. Concerns included scarcity of personal protective equipment, a lack of hospice-specific guidance on COVID-19, anxiety about needing to care for children and other relatives, and poor integration of palliative care in the acute planning response. CONCLUSION: The hospice sector is capable of responding flexibly and rapidly to the COVID-19 pandemic. Governments must urgently recognise the essential contribution of hospice and palliative care to the COVID-19 pandemic and ensure these services are integrated into the health care system response. Availability of personal protective equipment and setting-specific guidance is essential. Hospices may also need to be proactive in connecting with the acute pandemic response.