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1.
Health Expect ; 25(4): 1945-1953, 2022 Aug.
Article in English | MEDLINE | ID: covidwho-1961584

ABSTRACT

INTRODUCTION: Patient participation is essential for quality palliative care, and physicians play a crucial role in promoting participation. This study explores physicians' perceptions of patients and family caregivers' involvement in the different phases of the palliative pathway and employs a qualitative design with thematic analysis and a hermeneutic approach. METHODS: A purposive sampling included physicians who worked in different phases of the palliative pathway. In-depth, semi-structured interviews were conducted with 13 physicians in Norway between May and June 2020. RESULTS: Three main themes illustrate physicians' perceptions of patients' and family caregivers' involvement: (1) beneficence for the patient and the family caregivers in the early phase, (2) autonomy and shared decision-making in the middle phase, and (3) family involvement in the terminal phase. CONCLUSION: The physicians perceived bereavement conversations as essential, particularly if the pathway had been challenging. They also perceived patient participation and family caregivers' involvement as contextual. The results reveal that participation differs across the different phases of the palliative pathway. This type of knowledge should be included in the education of health-care professionals. Future research should explore elements vital to successful patient participation and family involvement in the different phases of care. PATIENT OR PUBLIC CONTRIBUTIONS: Family caregivers were involved in a previous study through individual interviews. The same interview guide used for the family caregivers was used when interviewing the physicians. The family caregivers' contribution led to nuanced questions in the interviews with the physicians, questions leaning on their stories told.


Subject(s)
Caregivers , Palliative Care , Patient Participation , Physicians , Bereavement , Caregivers/psychology , Humans , Norway , Palliative Care/methods , Palliative Care/psychology , Patient Participation/psychology , Physicians/psychology , Qualitative Research
2.
BMC Palliat Care ; 21(1): 63, 2022 May 03.
Article in English | MEDLINE | ID: covidwho-1951172

ABSTRACT

BACKGROUND: The SARS-CoV-2 pandemic has presented major challenges to the health system. Despite high acute case numbers, patients without Covid-19 still need to be cared for. Due to the severity of the disease and a possible stressful overall situation, patients with palliative care needs also require comprehensive care during pandemic times. In addition to specialized palliative care facilities, this also takes place in non palliative care wards. In order to ensure this general palliative care also in pandemic times, the experience of the staff should be used. The aim of this paper is to examine challenges and possible solutions for general palliative care inpatients in relation to the care of seriously ill and dying patients and their relatives. METHODS: Qualitative semi-structured focus groups were conducted online for the study. Participants were staff from intensive care or isolation wards or from units where vulnerable patients (e.g. with cognitive impairment) are cared for. The focus groups were recorded and subsequently transcribed. The data material was analysed with the content structuring content analysis according to Kuckartz. RESULTS: Five focus groups with four to eight health care professionals with various backgrounds were conducted. Fifteen main categories with two to eight subcategories were identified. Based on frequency and the importance expressed by the focus groups, six categories were extracted as central aspects: visiting regulations, communication with relatives, hygiene measures, cooperation, determination of the patients will and the possibility to say good bye. CONCLUSION: The pandemic situation produced several challenges needing specific solutions in order to manage the care of seriously ill and dying patients. Especially visiting needs regulation to prevent social isolation and dying alone. Finding alternative communication ways as well as interprofessional and interdisciplinary cooperation is a precondition for individualised care of seriously ill and dying patients and their relatives. Measures preventing infections should be transparently communicated in hospitals.


Subject(s)
COVID-19 , Palliative Care , Health Personnel/psychology , Humans , Inpatients , Palliative Care/psychology , Pandemics , SARS-CoV-2
3.
Soc Sci Med ; 305: 115069, 2022 Jul.
Article in English | MEDLINE | ID: covidwho-1915003

ABSTRACT

The diffusion of palliative care has been rapid, yet uncertainty remains regarding palliative care's "active ingredients." The National Consensus Project Guidelines for Quality Palliative Care identified eight domains of palliative care. Despite these identified domains, when pressed to describe the specific maneuvers used in clinical encounters, palliative care providers acknowledge that "it's complex." The field of systems has been used to explain complexity across many different types of systems. Specifically, engineering systems develop a representation of a system that helps manage complexity to help humans better understand the system. Our goal was to develop a system model of what palliative care providers do such that the elements of the model can be described concretely and sequentially, aggregated to describe the high-level domains currently described by palliative care, and connected to the complexity described by providers and the literature. Our study design combined methodological elements from both qualitative research and systems engineering modeling. The model drew on participant observation and debriefing semi-structured interviews with interdisciplinary palliative care team members by a systems engineer. The setting was an interdisciplinary palliative care service in a US rural academic medical center. In the developed system model, we identified 59 functions provided to patients, families, non-palliative care provider(s), and palliative care provider(s). The high-level functions related to measurement, decision-making, and treatment address up to 8 states of an individual, including an overall holistic state, physical state, psychological state, spiritual state, cultural state, personal environment state, and clinical environment state. In contrast to previously described expert consensus domain-based descriptions of palliative care, this model more directly connects palliative care provider functions to emergent behaviors that may explain system-level mechanisms of action for palliative care. Thus, a systems modeling approach provides insights into the challenges surrounding the recurring question of what is in the palliative care "syringe."


Subject(s)
Palliative Care , Syringes , Humans , Interdisciplinary Studies , Palliative Care/psychology , Qualitative Research , Rural Population
4.
Wiad Lek ; 75(5 pt 1): 1112-1117, 2022.
Article in English | MEDLINE | ID: covidwho-1912736

ABSTRACT

OBJECTIVE: The aim: To study the availability, quality and features of outpatient palliative and hospice care (PHC) to the population, including the elderly, in the COVID-19 pandemic context in order to optimize the PHC-mobile-teams service. PATIENTS AND METHODS: Materials and methods: Domestic and foreign literary sources; sociological research results. The research methods: biblio-semantic, sociological (questionnaires), systemic approach and systemic analysis, conventional medical-statistical methods. RESULTS: Results: Based on the analysis of international regulatory documents, domestic and foreign literary sources, the socio-medical importance of PHC is shown. In Ukraine, as in other countries, the number of elderly people is constantly growing, which leads to an increase in the PHC need. The results of the sociological survey determine: PHC needs in terms of age showed that in Ukraine almost 78.86% of people in need of PHC were aged 60 and over; the most popular (86.0% of responses) were PHC-mobile-teams and home-based services; about 80% of respondents said that pain limited their ability to work and affected on their psycho-emotional state and their quality of life; 86.3% of respondents reported an pain increased after COVID-19. The results of an online survey showed the effectiveness of PHC-mobile-teams service by improving the availability of PHC. CONCLUSION: Conclusions: To ensure high-quality PHC availability it should be integrated at the Health and Social Care Systems. According to the experience of the Kyiv PHC-mobile-teams service, it significantly increases PHC availability, which is especially important in the COVID-19 pandemic context.


Subject(s)
COVID-19 , Hospice Care , Aged , Humans , Middle Aged , Pain , Palliative Care/psychology , Pandemics , Quality of Life
5.
Transl Behav Med ; 12(7): 816-824, 2022 07 18.
Article in English | MEDLINE | ID: covidwho-1901240

ABSTRACT

New York City was a "global COVID-19 hotspot" in spring 2020. Many health teams rapidly transitioned to telehealth platforms. Little is known about the experiences of inpatient palliative care services who delivered telehealth services during the pandemic. This study was aimed to explore the experiences of an interdisciplinary palliative care team in meeting the holistic needs of oncology inpatients via telehealth over a 10-week period during the first COVID-19 surge. A targeted sample of interdisciplinary palliative specialists at an urban comprehensive cancer center participated in in-depth interviews that explored participants' experiences delivering physical, psychosocial, and spiritual care via telehealth. An interdisciplinary coding team followed a rigorous thematic text analysis approach and met regularly to reach consensus on emerging themes. Eleven palliative specialists from six disciplines (chaplaincy, medicine, nursing, pharmacy, physician assistant, and social work) participated. Seventy-three percent reported not receiving telehealth training prior to COVID-19 and 64% were "not at all" or "somewhat comfortable" delivering telepalliative care. Several themes were identified, including the barriers related to telehealth, the impact of telehealth on the quality of relationships with patients, their families, and coworkers, and the changes in perceived self-efficacy of fulfilling job responsibilities. Telehealth use has increased significantly during COVID-19, requiring further evaluation of its utility. Participants reported both positive and negative inpatient telepalliative care experiences associated with various domains of professional functioning, such as communication, relationships with key stakeholders, and self-efficacy. Enhanced telehealth training and support must be improved to sustain the palliative workforce and promote high-quality patient and family care in the future.


In spring 2020, New York City was a COVID-19 global hotspot. The palliative care team at a major cancer center rapidly transitioned to a "virtual service" (i.e., telehealth) without any physical contact with oncology inpatients for a 10-week period. No infrastructure for inpatient telehealth had been established prior to the transition. We wanted to explore how effective the interdisciplinary palliative care team felt in meeting the psychosocial, spiritual, and physical needs of patients and their families via telehealth. The palliative care team consisted of advanced practice providers, physicians, a chaplain, pharmacist, and social worker. Through participant interviews, our research team identified common themes related to the barriers and facilitators of telehealth; various effects on the quality of relationships with patients, their families, and coworkers; and diverse experiences related to the team's perceived effectiveness in delivering telepalliative care. There are several implications to consider. Inpatient practice settings must design telehealth infrastructures to ensure both patient and provider protections when in-person care is not possible. Multilevel policies must direct investments in telehealth training for health professionals to support high-quality care during future public health crises. Research should be directed toward developing and measuring enhanced telehealth interventions to support effective and holistic virtual palliative care delivery for inpatient settings.


Subject(s)
COVID-19 , Telemedicine , Humans , Inpatients/psychology , Palliative Care/psychology , Pandemics
6.
BMC Palliat Care ; 21(1): 77, 2022 May 17.
Article in English | MEDLINE | ID: covidwho-1849709

ABSTRACT

BACKGROUND: Prolonging the end-of-life process means that the duration of health care work increases and the management of death is delegated to health care providers by patients' families. Thus, it is important to explore measures to enhance the quality of end-of-life care by identifying the predictors thereof. End-of-life care should be people-centred, relieving serious health-related suffering, be it physical, psychological, social, or spiritual. Nurses who provide end-of-life care usually spend the most time with dying patients, administering care to help patients who wish to die with dignity; therefore, end-of-life nursing care is highly significant. METHODS: This study was conducted on nurses of 500-bed or larger university hospitals in city D and province C in South Korea from 20 August to 10 September 2020 using a structured questionnaire. A total of 213 nurses with a minimum clinical career of one year and at least one EOLC experience participated. The final analysis sample consisted of 206 nurses. Descriptive analysis, Pearson's correlation coefficients, ANOVA, t-test, and multiple-regression analysis were used to analyse the data. RESULTS: This study found that end-of-life care performance was significantly positively correlated with end-of-life care stress [r = .253, p < .001], sense of calling [r = .424, p < .001], and resilience [r = .397, p < .001]. End-of-life care stress [ß = .185, p = .003], sense of calling [ß = .259, p < .001], resilience [ß = .252, p < .001], and working in a hospice ward [ß = .140, p = .041] or intensive care unit [ß = .218, p = .008], as opposed to the emergency department, were identified as predictors of end-of-life care performance. These factors explained 28.3% of the variance in the end-of-life care performance in this study. CONCLUSIONS: Boosting the sense of calling and resilience among nurses providing palliative care can improve overall end-of-life care performances. Subsequent studies should develop and evaluate interventions and programs that could improve these factors to ensure a positive change in health care and enhance the quality of end-of-life care in hospitals.


Subject(s)
Hospice Care , Terminal Care , Death , Humans , Palliative Care/psychology , Republic of Korea , Terminal Care/psychology
7.
J Palliat Med ; 25(8): 1222-1227, 2022 Aug.
Article in English | MEDLINE | ID: covidwho-1740727

ABSTRACT

Background: As thousands of patients, often with complex care needs, were hospitalized due to the coronavirus disease 2019 (COVID-19) pandemic, demand for palliative care was magnified. Part of hospitals' palliative care teams, palliative chaplains delivered emotional support while specializing in the religious, spiritual, and the existential aspects of care. With COVID-19 containment measures increasing isolation and disrupting supportive family connections, the emotional and spiritual well-being of the patients and families were unclear. Objectives: Through the unique perspectives and insights of inpatient palliative care chaplains, we sought to qualitatively capture their perceptions and the patient-family experience as the pandemic emerged. Setting/Subjects: This investigation was based in the United States. Design: Individual semistructured telephone interviews (n = 10) were conducted between April 22 and May 6, 2020. Through thematic analysis, analyses progressed through initial coding sessions, refining a codebook, identifying representative quotes, and recognizing themes. Results: Five themes were identified and described through the coding process and recognizing representative quotes: (1) visitor restrictions-patients, (2) visitor restrictions-families, (3) religious struggle, (4) spiritual distress, and (5) decision making. Conclusions: Inpatient palliative care chaplains were active interprofessional partners caring for patients and families as the uncertainty of the pandemic unfolded. The crises of this pandemic magnified chaplain specialization as they attended to emotional, spiritual, and religious suffering and as well as complex decision making with patients and their family members.


Subject(s)
COVID-19 , Clergy , Clergy/psychology , Family , Humans , Palliative Care/psychology , Spirituality , United States
8.
J Pain Symptom Manage ; 64(1): 49-57, 2022 07.
Article in English | MEDLINE | ID: covidwho-1734763

ABSTRACT

CONTEXT: Given the adverse impact of COVID-19 on the wellbeing of palliative care providers, there is a growing need to better understand protective variables, such as self-care, mindfulness and self-compassion, as they relate to resilience. OBJECTIVE: To investigate mindful self-care, self-compassion, and resilience as reported by palliative care providers during the COVID-19 pandemic. METHODS: Descriptive, cross-sectional survey. An electronic questionnaire captured data from validated instruments measuring each study variable, as well as participant demographics and perceived impacts of COVID-19 on professional quality of life. RESULTS: Positive, statistically significant correlations were found between mindful self-care, self-compassion, and resilience. These variables were also associated with greater satisfaction with professional life and perceived lessened impairment in physical and/or mental health due to a decrease in self-care activities stemming from altered routines during COVID-19. Those with higher resilience had worked in palliative care longer and also reported higher levels of self-compassion and mindful self-care, explaining 50% of variance. Self-compassion, satisfaction with professional life, and changes in self-care routine due to professional activities in the pandemic explained 44.3% of variance in mindful self-care. Self-compassion, female gender, and working as a frontline responder to the COVID-19 pandemic accounted for 35% variance in resilience levels. CONCLUSIONS: Results from this study extend the currently limited knowledge of self-care, mindfulness and self-compassion, as protective variables related to resilience in palliative care providers during the COVID-19 pandemic. Further longitudinal studies into causal effects on health and wellbeing over time are needed.


Subject(s)
Burnout, Professional , COVID-19 , Mindfulness , Burnout, Professional/psychology , Cross-Sectional Studies , Empathy , Female , Humans , Mindfulness/methods , Palliative Care/psychology , Pandemics , Quality of Life , Self Care/methods , Self-Compassion
9.
J Pain Symptom Manage ; 63(4): e349-e356, 2022 04.
Article in English | MEDLINE | ID: covidwho-1587174

ABSTRACT

CONTEXT: The COVID-19 pandemic strongly challenged healthcare workers, disrupting their work routine and impacting on their professional life. A previous investigation explored levels of burnout and psychological morbidity among palliative care professionals (PCPs) during COVID-19 first wave. OBJECTIVE: To update data about burnout and psychological morbidity among PCPs after a year of COVID-19 pandemic. METHODS: The same questionnaires on burnout (Maslach Burnout Inventory, MBI) and psychological morbidity (General Health Questionnaire 12 items, GHQ-12) were administered a year after. Differences in MBI and GHQ-12 scores obtained in the two studies (COVID2020 and COVID2021), as well as distributions of PCPs showing burnout symptoms and psychological morbidity were analyzed and compared. We also explored the association between the three dimensions of burnout and socio-demographic and professional characteristics. RESULTS: The sample consisted of 145 PCPs (59% physicians and 41% nurses). Response rate (70.4%) was quite similar to the previous study (73.2%). No differences were observed in the frequency of burnout between COVID2021 and COVID2020; the PCPs in COVID2021 reported marginally higher level of EE (P = .049) and this result is confirmed in physicians (P = .010) while no difference was observed in nurses (P = .326). In addition, the percentage of cases showing psychological morbidity significantly decreased. CONCLUSION: Our findings show stable levels of burnout and decreasing levels of psychological morbidity among PCPs one year after the onset of the COVID-19 pandemic. However, more research is needed to detail the significance of emotional exhaustion dimension, a variable influenced by the survey.


Subject(s)
Burnout, Professional , COVID-19 , Burnout, Professional/epidemiology , Burnout, Professional/psychology , Burnout, Psychological , Humans , Palliative Care/psychology , Pandemics , Surveys and Questionnaires
11.
Am J Hosp Palliat Care ; 39(8): 986-995, 2022 Aug.
Article in English | MEDLINE | ID: covidwho-1408310

ABSTRACT

According to the WHO guideline, palliative care is an integral component of COVID-19 management. The relief of physical symptoms and the provision of psychosocial support should be practiced by all healthcare workers caring for COVID-19 patients. In this review, we aim to provide a simple outline on COVID-19, suffering in COVID-19, and the role of palliative care in COVID-19. We also introduce 3 principles of palliative care that can serve as a guide for all healthcare workers caring for COVID-19 patients, which are (1) good symptom control, (2) open and sensitive communication, and (3) caring for the whole team. The pandemic has brought immense suffering, fear and death to people everywhere. The knowledge, skills and experiences from palliative care could be used to relieve the suffering of COVID-19 patients.


Subject(s)
COVID-19 , Hospice and Palliative Care Nursing , Health Personnel/psychology , Humans , Palliative Care/psychology , Pandemics
12.
PLoS One ; 16(7): e0254056, 2021.
Article in English | MEDLINE | ID: covidwho-1327975

ABSTRACT

BACKGROUND: The SARS-CoV-2 (COVID-19) pandemic is posing major challenges for health care systems. In Germany, one such challenge has been that adequate palliative care for the severely ill and dying (with and without COVID-19), as well as their loved ones, has not been available at all times and in all settings., the pandemic has underlined the significance of the contribution of general practitioners (GPs) to the care of severely ill and dying patients. OBJECTIVES: To describe GPs' experiences, challenges and perspectives with respect to end-of-life care during the first peak of the pandemic (spring 2020) in Germany. MATERIALS AND METHODS: In November and December 2020, a link to an Unipark online survey was sent to GPs registered on nationwide distribution lists. RESULTS: In total, 410 GPs responded; 61.5% indicated that the quality of their patients' end-of-life care was maintained throughout the pandemic, 36.8% reported a decrease in quality compared to pre-pandemic times. Of the GPs who made home visits to severely ill and dying patients, 61.4% reported a stable number of visits, 28.5% reported fewer visits. 62.7% of the GPs reported increased telephone contact and reduced personal contact with patients; 36.1% offered video consultations in lieu of face-to-face contact. The GPs reported that relatives were restricted (48.5%) or prohibited from visiting (33.4%) patients in nursing homes. They observed a fear of loneliness among patients in nursing homes (91.9%), private homes (87.3%) and hospitals (86.1%). CONCLUSIONS: The present work provides insights into the pandemic management of GPs and supports the development of a national strategy for palliative care during a pandemic. To effectively address end-of-life care, GPs and palliative care specialists should be involved in COVID-19 task forces on micro, meso and macro levels of health care.


Subject(s)
COVID-19/psychology , General Practitioners , Terminal Care/methods , Aged , Attitude of Health Personnel , COVID-19/epidemiology , Female , General Practitioners/psychology , General Practitioners/statistics & numerical data , Germany/epidemiology , Humans , Male , Middle Aged , Palliative Care/methods , Palliative Care/psychology , Palliative Care/trends , Referral and Consultation , SARS-CoV-2/isolation & purification , Surveys and Questionnaires , Telephone , Terminal Care/statistics & numerical data
14.
J Soc Work End Life Palliat Care ; 17(2-3): 146-157, 2021.
Article in English | MEDLINE | ID: covidwho-1276065

ABSTRACT

The rise of COVID-19 in March, 2020 led to an urgent and acute need for communication guidelines to help clinicians facing a novel disease, amidst a cacophony of voices and demands, find the words to use in the face of this public health emergency. We identified critical topics that arose at the interface of staff, patient and family to guide the structure and content of a guideline. Organized in an easy to read table, the guide was made available to a wide variety of websites, organizations and schools as a free PDF resource across the country and beyond.


Subject(s)
COVID-19/therapy , Critical Illness/therapy , Palliative Care/methods , Social Workers/psychology , COVID-19/psychology , Communication , Humans , Palliative Care/psychology , Patient Education as Topic/methods , Quality of Life/psychology
15.
Palliat Support Care ; 19(2): 129-134, 2021 04.
Article in English | MEDLINE | ID: covidwho-1253858

ABSTRACT

OBJECTIVE: Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers' moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC). METHOD: The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs. RESULTS: A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents' depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic. SIGNIFICANCE OF RESULTS: The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.


Subject(s)
Bereavement , COVID-19/psychology , Family/psychology , Health Personnel/psychology , Social Support , Terminal Care/psychology , COVID-19/nursing , Child , Female , Hospice Care , Humans , Male , Palliative Care/psychology , United States
16.
J Soc Work End Life Palliat Care ; 17(2-3): 158-163, 2021.
Article in English | MEDLINE | ID: covidwho-1246633

ABSTRACT

The arrival of COVID-19 brought about many disruptions to our world and communities. The hospital visitation restrictions were one of the more, if not most, challenging aspects of psychosocial care for patients and families. It was difficult to anticipate the emotional toll that visitation restrictions would take on patients, families, and staff. Once hospital visitation restrictions were in place, new strategies for patient/family connection and team communication had to be established. The Palliative Care team at a large, urban, Midwestern academic medical center created an interprofessional Family Support Team in the spring of 2020 to address the psychosocial needs of the families of critically ill COVID-19 patients.


Subject(s)
COVID-19/psychology , Family/psychology , Palliative Care/psychology , Quality of Life/psychology , Social Support , Attitude to Death , Humans , Patient-Centered Care
20.
J Soc Work End Life Palliat Care ; 17(2-3): 186-197, 2021.
Article in English | MEDLINE | ID: covidwho-1196936

ABSTRACT

A phenomenon occurring early in the pandemic involving media-based recommendations of pulse oximeters, devices purported to detect a dangerous Covid-19 symptom, invites attention to effects of decision-making shortcuts, or cognitive heuristics, and associated cognitive biases or errors, on patient/caregiver healthcare decisions. Heuristics also affect palliative/medical social workers' recommendations to patients/caregivers. This article looks at availability, confirmation, affect, false consensus and framing biases, and suggestions for debiasing decision making. Implications for other healthcare decisions are considered.


Subject(s)
COVID-19/psychology , Heuristics , Palliative Care/psychology , Quality of Life/psychology , Social Workers/psychology , Attitude to Death , Depression/psychology , Humans , Mental Health , Social Support
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