Integrating Palliative Care Into Self-management of Breast Cancer: A Pilot Randomized Controlled Trial.

BACKGROUND: Breast cancer patients may not be well-informed about palliative care, hindering its integration into cancer self-management. OBJECTIVE: The aim of this study was to test Managing Cancer Care: A Personal Guide (MCC-PT), an intervention to improve palliative care literacy and cancer self-management. METHODS: This was a single-blind pilot randomized controlled trial to evaluate the feasibility/acceptability and intervention effects of MCC-PT on palliative care literacy, self-management behaviors/emotions, and moderation by demographic/clinical characteristics. We enrolled 71 stages I to IV breast cancer patients aged at least 21 years, with >6-month prognosis at an academic cancer center. Patients were randomized to MCC-PT (n = 32) versus symptom management education as attention-control (n = 39). At baseline, 1 month, and 3 months, participants completed the Knowledge of Care Options Test (primary outcome), Control Preferences Scale, Goals of Care Form, Medical Communication Competence Scale, Measurement of Transitions in Cancer Scale, Chronic Disease Self-efficacy Scale, Hospital Anxiety and Depression Scale, and the Mishel Uncertainty in Illness Scale. RESULTS: Mean participant age was 51.5 years (range, 28-74 years); 53.5% were racial/ethnic minority patients, and 40.8% had stage III/IV cancer. After adjusting for race/ethnicity, MCC-PT users improved their palliative care literacy with a large effect size (partial η2 = 0.13). Patients at late stage of disease showed increased self-management (partial η2 = 0.05) and reduced anxiety (partial η2 = 0.05) and depression (partial η2 = 0.07) with medium effect sizes. CONCLUSIONS: Managing Cancer Care: A Personal Guide is feasible and appears most effective in late-stage cancer. Research is needed to elucidate relationships among cancer stage, race/ethnicity, and self-management outcomes. IMPLICATIONS FOR PRACTICE: Integration of palliative care into cancer care can assist in creation of appropriate self-management plans and improve emotional outcomes.

Professionals´ readiness for change to knowledge-based palliative care at nursing homes: a qualitative follow-up study after an educational intervention.

BACKGROUND: There has been a global increase in the number of people who are dying of old age. This development implies a need for good palliative care among older persons at the end of life. Here nursing homes have an important role to play. However, the principles of palliative care have not been sufficiently applied in nursing homes, and there is a need to increase the implementation of palliative care in these settings. Therefore the project named Implementation of Knowledge-Based Palliative Care in Nursing Homes (the KUPA project, to use its Swedish acronym) was started as a contribution to filling this knowledge gap. The aim of the present study was to investigate the professionals' experiences of readiness for change to knowledge-based palliative care at nursing homes after the educational intervention within the KUPA project. METHODS: The focus group method was used to interview 39 health-care professionals with the aid of semistructured questions based on the Organizational Readiness for Change theoretical framework. Six focus groups were formed at six nursing homes in two counties in southern Sweden. The groups included different types of professionals: assistant nurses, nurses, occupational therapists, physiotherapists and social workers. The analysis was conducted with an abductive approach and included deductive and inductive content analysis. RESULTS: The analysis revealed one overarching theme: hopeful readiness for change in palliative care despite remaining barriers. The main categories were increased knowledge facilitating development, enhanced team spirit, uncertainty about future plans connected with hopeful readiness and remaining organizational barriers. CONCLUSIONS: This study adds knowledge and understanding concerning professionals' readiness for change palliative care in nursing homes and shows how ready nursing home settings undertake these changes in practice. The Organizational Readiness for Change theory proved suitable for application in nursing homes to assess the professionals' experiences and to evaluate educational interventions regardless of the organization's readiness for change. TRIAL REGISTRATION: ClinicalTrials NCT02708498 , first registration 15/03/2016.

Best Practices for Using Telehealth in Hospice and Palliative Care.

Hospice and palliative care providers throughout the United States have continued to provide compassionate patient- and family-centered care during the COVID-19 (coronavirus disease 2019) pandemic while adapting to the need for scrupulous infection control measures and the accelerated use of telehealth. Prior to the pandemic, hospice and palliative care adopted telehealth slowly compared with other specialties, but its rapidly increasing utilization during the COVID-19 pandemic has long-term implications for access to primary and specialty palliative care, particularly for patients in rural communities and populations experiencing inequitable access to services. Telehealth also shows great promise for leveraging technology to provide care more effectively and efficiently. As more provider organizations become equipped with telehealth infrastructure, and as advocacy for broader reimbursement of these services grows, telehealth services for hospice and palliative care are expected to continue. This article highlights the work of expert clinicians from multiple hospice and palliative care organizations to develop best practices for conducting telehealth visits in inpatient and community settings. The authors propose that best practices be compiled and considered to ensure quality-driven, evidence-based clinical practice guidelines with interprofessional applicability.

The inaugural United States World Hospice and Palliative Care Day Celebration: A virtual coming together.

OBJECTIVE: On October 10, 2020, the Memorial Sloan Kettering Cancer Center Supportive Care Service hosted their first-ever United States (US) World Hospice and Palliative Care Day (WHPCD) Celebration. The purpose of this article is to describe the US inaugural event in alignment with the broader goals of WHPCD and provide lessons learned in anticipation of the second annual conference to be held on October 5-6, 2021. METHODS: Description of the inaugural event in the context of COVID-19 and WHPCD, co-planning conference team reflection, and attendee survey responses. RESULTS: The Worldwide Hospice Palliative Care Alliance initially launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The US-based innovative virtual conference featured 23 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across nine diverse sessions addressing priorities at the intersection of COVID-19, social injustice, and the global burden of serious health-related suffering. Two primary aims guided the event: community building and wisdom sharing. Nearly 270 registrants from at least 16 countries and one dozen states across the US joined the free program focused on both personal and professional development. SIGNIFICANCE OF RESULTS: Unlike many other academic conferences and professional gatherings that were relegated to online forums due to pandemic-related restrictions, the US WHPCD Celebration was intentionally established to create a virtual coming together for collective reflection on the barriers and facilitators of palliative care delivery amid vast societal change. The goal to ensure a globally relevant and culturally inclusive agenda will continue to draw increased participation at an international level during future annual events. Finally, the transparent and respectful sharing of palliative care team experiences in the year preceding the conference established a safe environment for both individual expression and scholarly discussion.

Arbeitsbedingungen von Pflegekräften in der allgemeinen Palliativversorgung in Deutschland.

Working conditions of nurses in general palliative care in Germany - A cross-sectional survey Abstract. Background: Most terminally ill people are treated within general palliative care including outpatient care, nursing homes and hospitals. In contrast, only a small number is treated within specialised palliative care. Nursing research within the framework of palliative care focuses on the latter. AIM: To investigate the working conditions of nurses working in general palliative care and to analyse potential differences between nurses in outpatient care, in nursing homes and in hospitals. METHODS: A cross-sectional survey was conducted among nurses working in outpatient care, in nursing homes and in hospitals. The questionnaire included questions about working conditions, parts of the Copenhagen Psychosocial Questionnaire and self-developed questions. Descriptive and bivariate analyses were conducted. RESULTS: 437 questionnaires entered final analyses (response rate 16.7 %). On average, nurses spend 20 % of their working time with palliative care. Every fourth nurse (n = 104) express the wish for an additional qualification in palliative care. The following demands are reported: confrontation with pain, death and dying, as well as care of relatives. 59 % (n = 249) of the nurses evaluate the quality of palliative care as good / very good. CONCLUSIONS: Nurses are faced with demands, which so far had only been a subject of discussion within the framework of the specialised palliative care. Further steps for action, in particular the additional qualification in palliative care for nurses, should be discussed.

Palliative and Hospice Care in Correctional Facilities: Integrating a Family Nursing Approach to Address Relational Barriers.

BACKGROUND: The need for palliative and hospice care for persons with life-limiting conditions who are incarcerated is increasingly common in correctional facilities worldwide. OBJECTIVE: Through a family nursing lens, we critically analyze the unique challenges experienced by those requiring palliative care while incarcerated. Key concerns and implications for nursing are illustrated through the discussion of a representative case scenario. METHODS: The case scenario was developed based on the findings of a scoping review of academic and gray literature (such as policy documents and editorials) about palliative, hospice, and end-of-life care in corrections. RESULTS: The case scenario highlights multilevel barriers that were identified, including the individual, relational, institutional, and sociocultural contexts of palliative care in correctional facilities. Evidence is presented of how integration of a family nursing perspective can enhance specialized palliative and hospice care services in correctional settings. CONCLUSIONS: By applying a family nursing approach, nurses practicing with correctional populations can ensure persons with life-limiting illnesses are not denied their right to appropriate end-of-life care by playing a key role in addressing barriers to palliative and hospice care access in corrections. Specific attention to relational issues and holistic care can contribute to enhanced palliative and hospice care, greater dignity in dying, and improved family and peer outcomes, which have benefits for individuals, families, communities, and society. IMPLICATIONS FOR PRACTICE: Through the case scenario, we illustrate real issues emerging in correctional contexts and offer evidence of how family nursing relational principles can be applied to promote adequate palliative and hospice care.

Adapting and Going the Extra Mile: A Qualitative Study of Palliative Care in Rural Northern Norway From the Perspective of Healthcare Providers.

BACKGROUND: Despite significant developments in palliative care in recent decades, we still find important differences in access to and delivery of care in rural Norway. OBJECTIVE: The aim of this study was to explore what healthcare professionals consider necessary to provide equality in care for palliative patients in rural areas. METHODS: A qualitative approach with focus group discussions and individual interviews with 52 health professionals was used, starting with 5 uniprofessional focus groups of general practitioners and nurses/cancer nurses, followed by 5 interprofessional groups and 6 individual interviews. Interview transcripts were analyzed thematically. RESULTS: We found local variations in organization, competence and access to palliative care, and challenging geographical conditions. It was essential to be proactive, flexible and willing to go the extra mile, but this may conceal the need for a stronger focus on competence and organization of palliative care. Access to written guidelines and practical tools was important, as was forming palliative teams for particular situations. CONCLUSIONS: Palliative care needs strengthening in rural areas, and increased competence for all healthcare professionals is vital to increase equality in care. Geographical conditions require locally adapted solutions. Access to guidelines and interprofessional collaboration are essential. IMPLICATIONS FOR PRACTICE: Rural palliative care needs in Norway are improving, as exemplified by at least 1 cancer nurse assigned to each local authority, and access to guidelines and palliative tools and interprofessional collaboration.

Association of a pediatric palliative oncology clinic on palliative care access, timing and location of care for children with cancer.

BACKGROUND: Most pediatric palliative care (PPC) services are inpatient consultation services and do not reach patients and families in the outpatient and home settings, where a vast majority of oncology care occurs. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated with receipt and timing of PPC and hospital days in the last 90 days of life. METHODS: Oncology patients (ages 0-25) with a high-risk event (death, relapse/progression, and/or phase I/II clinical trial enrollment) between 07/01/2015 and 06/30/2018 were included. PPO clinic started July 2017. Two cohorts were defined: pre-PPO (high-risk event(s) occurring 07/01/2015-06/30/2017) and post-PPO (high-risk event(s) occurring 07/01/2017-06/30/2018). Descriptive statistics were performed; demographic, disease course, and outcomes variables across cohorts were compared. RESULTS: A total of 426 patients were included (pre-PPO n = 235; post-PPO n = 191). Forty-seven patients with events in both pre- and post-PPO cohorts were included in the post-PPO cohort. Mean age at diagnosis was 8 years. Diagnoses were evenly distributed among solid tumors, brain tumors, and leukemia/lymphoma. Post-PPO cohort patients received PPC more often (45.6% vs. 21.3%, p < 0.0001), for a longer time before death than the pre-PPO cohort (median 88 vs. 32 days, p = 0.027), and spent fewer days hospitalized in the last 90 days of life (median 3 vs. 8 days, p = 0.0084). CONCLUSION: A limited-day, embedded PPO clinic was associated with receipt of PPC and spending more time at home in patients with cancer who had high-risk events. Continued improvements to these outcomes would be expected with additional oncology provider education and PPO personnel.

The pervasive relevance of COVID-19 within routine paediatric palliative care consultations during the pandemic: A conversation analytic study.

BACKGROUND: The importance of caring for children with complex and serious conditions means that paediatric palliative care must continue during pandemics. The recent pandemic of Coronavirus Disease 2019 (COVID-19) provides a natural experiment to study health communication during pandemic times. However, it is unknown how communication within consultations might change during pandemics. AIM: This study, a sub-study of a larger project, aimed to examine real-world instances of communication in paediatric palliative care consultations prior to and during the COVID-19 pandemic to understand how clinicians and families talk about the pandemic. DESIGN: Paediatric palliative care consultations prior to, during, and immediately following the initial peak of COVID-19 cases in Australia were video recorded and analysed using Conversation Analysis methods. SETTING/PARTICIPANTS: Twenty-five paediatric palliative care consultations (including face-to-face outpatient, telehealth outpatient and inpatient consultations) were video recorded within a public children's hospital in Australia. Participants included 14 health professionals, 15 child patients, 23 adult family members and 5 child siblings. RESULTS: There was a pervasive relevance of both serious and non-serious talk about COVID-19 within the consultations recorded during the pandemic. Topics typical of a standard paediatric palliative care consultation often led to discussion of the pandemic. Clinicians (55%) and parents (45%) initiated talk about the pandemic. CONCLUSIONS: Clinicians should not be surprised by the pervasiveness of COVID-19 or other pandemic talk within standard paediatric palliative care consultations. This awareness will enable clinicians to flexibly address family needs and concerns about pandemic-related matters that may impact health and wellbeing.

The role and response of primary healthcare services in the delivery of palliative care in epidemics and pandemics: A rapid review to inform practice and service delivery during the COVID-19 pandemic.

BACKGROUND: The increased number of deaths in the community happening as a result of COVID-19 has caused primary healthcare services to change their traditional service delivery in a short timeframe. Services are quickly adapting to new challenges in the practical delivery of end-of-life care to patients in the community including through virtual consultations and in the provision of timely symptom control. AIM: To synthesise existing evidence related to the delivery of palliative and end-of-life care by primary healthcare professionals in epidemics and pandemics. DESIGN: Rapid systematic review using modified systematic review methods, with narrative synthesis of the evidence. DATA SOURCES: Searches were carried out in Medline, Embase, PsychINFO, CINAHL and Web of Science on 7th March 2020. RESULTS: Only five studies met the inclusion criteria, highlighting a striking lack of evidence base for the response of primary healthcare services in palliative care during epidemics and pandemics. All were observational studies. Findings were synthesised using a pandemic response framework according to 'systems' (community providers feeling disadvantaged in terms of receiving timely information and protocols), 'space' (recognised need for more care in the community), 'staff' (training needs and resilience) and 'stuff' (other aspects of managing care in pandemics including personal protective equipment, cleaning care settings and access to investigations). CONCLUSIONS: As the COVID-19 pandemic progresses, there is an urgent need for research to provide increased understanding of the role of primary care and community nursing services in palliative care, alongside hospices and community specialist palliative care providers.

Goals of care and COVID-19: A GOOD framework for dealing with uncertainty.

As the COVID-19 pandemic continues, more patients will require palliative and end-of-life care. In order to ensure goal-concordant-care when possible, clinicians should initiate goals-of-care conversations among our most vulnerable patients and, ideally, among all patients. However, many non-palliative care clinicians face deep uncertainty in planning, conducting, and evaluating such interactions. We believe that specialists within palliative care are aptly positioned to address such uncertainties, and in this article offer a relevant update to a concise framework for clinicians to plan, conduct, and evaluate goals-of-care conversations: the GOOD framework. Once familiar with this framework, palliative care clinicians may use it to educate their non-palliative care colleagues about a timely and critical component of care, now and beyond the COVID-19 era.

Changing patterns of mortality during the COVID-19 pandemic: Population-based modelling to understand palliative care implications.

BACKGROUND: COVID-19 has directly and indirectly caused high mortality worldwide. AIM: To explore patterns of mortality during the COVID-19 pandemic and implications for palliative care, service planning and research. DESIGN: Descriptive analysis and population-based modelling of routine data. PARTICIPANTS AND SETTING: All deaths registered in England and Wales between 7 March and 15 May 2020. We described the following mortality categories by age, gender and place of death: (1) baseline deaths (deaths that would typically occur in a given period); (2) COVID-19 deaths and (3) additional deaths not directly attributed to COVID-19. We estimated the proportion of people who died from COVID-19 who might have been in their last year of life in the absence of the pandemic using simple modelling with explicit assumptions. RESULTS: During the first 10 weeks of the pandemic, there were 101,614 baseline deaths, 41,105 COVID-19 deaths and 14,520 additional deaths. Deaths in care homes increased by 220%, while home and hospital deaths increased by 77% and 90%, respectively. Hospice deaths fell by 20%. Additional deaths were among older people (86% aged ⩾ 75 years), and most occurred in care homes (56%) and at home (43%). We estimate that 22% (13%-31%) of COVID-19 deaths occurred among people who might have been in their last year of life in the absence of the pandemic. CONCLUSION: The COVID-19 pandemic has led to a surge in palliative care needs. Health and social care systems must ensure availability of palliative care to support people with severe COVID-19, particularly in care homes.

Recommendations to Leverage the Palliative Nursing Role During COVID-19 and Future Public Health Crises.

With the daily number of confirmed COVID-19 cases and associated deaths rising exponentially, social fabrics on a global scale are being worn by panic, uncertainty, fear, and other consequences of the health care crisis. Comprising more than half of the global health care workforce and the highest proportion of direct patient care time than any other health professional, nurses are at the forefront of this crisis. Throughout the evolving COVID-19 pandemic, palliative nurses will increasingly exercise their expertise in symptom management, ethics, communication, and end-of-life care, among other crucial skills. The literature addressing the palliative care response to COVID-19 has surged, and yet, there is a critical gap regarding the unique contributions of palliative nurses and their essential role in mitigating the sequelae of this crisis. Thus, the primary aim herein is to provide recommendations for palliative nurses and other health care stakeholders to ensure their optimal value is realized and to promote their well-being and resilience during COVID-19 and, by extension, in anticipation of future public health crises.

La agonía en el paciente en situación terminal / Agony in the patient in terminal situation

A lo largo del proceso de la enfermedad terminal, el enfermo presenta una serie de síntomas refractarios que no responden a un tratamiento habitual, por lo que los cuidados de enfermería irán dirigidos a fomentar la calidad de vida del paciente. La agonía es la etapa que precede a la muerte, y suscita en el paciente y sus familiares necesidades integrales. Dentro de los cuidados que precisan los pacientes en situación terminal no debemos olvidar los de ámbito espiritual y psicológicos; se genera así la necesidad de formar al personal sanitario en esta esfera específica. Por último, cuando la fase agónica se vuelve intolerable y devastadora para el paciente, recurrimos a la sedación paliativa como opción de tratamiento para disminuir el nivel d conciencia del enfermo terminal, con la finalidad de controlar los síntomas refractarios del paciente y aliviar su sufrimiento

Throughout the process of terminal illness, the patient presents a series of refractory symptoms which do not respond to regular treatment, so that nursing care will be aimed at promoting the quality of life of the patient. The agony is the stage that precedes the death arousing in the patient and his family's integral needs. Among the care required by terminally ill patients, we must not forget those of a spiritual and psychological nature, thus generating the need to train health personnel in this area in order to respond to these specific needs. Finally, when the dying phase becomes intolerable and devastating for the patient, we resort to palliative sedation as a treatment option to lower the level of consciousness of the terminally ill patient, in order to control the patient's refractory symptoms and alleviate their suffering

Bahrain: care in the island kingdom.

Dion Smyth's review of palliative nursing on the internet.

Use of Palliative Care Consultation Services for Infants With Life-Threatening Conditions in a Metropolitan Hospital.

BACKGROUND: Palliative care is becoming an important component for infants with life-limiting or life-threatening conditions and their families. Yet palliative care practices appear to be inconsistent and sporadically used for infants. PURPOSE: The purpose of this study was to describe the use of an established pediatric palliative care team for seriously ill infants in a metropolitan hospital. METHODS: This was a retrospective medical record review. FINDINGS: The population included 64 infants who were admitted to a level IV neonatal intensive care unit (NICU) and then died during hospitalization between January 2015 and December 2016. Most infants died in an ICU (n = 63, 95%), and only 20 infants (31%) received palliative care consultation. Most common reasons for consultation were care coordination, defining goals of care and end-of-life planning, and symptom management. IMPLICATIONS FOR PRACTICE: Palliative care consultation at this institution did not change the course of end-of-life care. Interventions provided by the ICU team to infants surrounding end of life were similar to those in infants receiving palliative care services from the specialists. Our findings may be useful for developing guidelines regarding how to best utilize palliative care services for infants with life-threatening conditions who are admitted to an ICU. IMPLICATIONS FOR RESEARCH: These finding support continued research in neonatal palliative care, more specifically the impact of palliative care guidelines and algorithms.

Palliative care for chronic respiratory disease: integrated care in outpatient settings.

Chronic respiratory diseases are progressive and often life-limiting illnesses. Patients experience debilitating and troubling symptoms that impact on their quality of life. Despite this, there is under-recognition of patients who may be entering the final year of their life and require palliative care services. The Royal Wolverhampton NHS Trust in partnership with Compton Care has established chronic respiratory disease multidisciplinary team meetings and a combined respiratory and palliative care outpatient clinic to address these issues. This article presents the impact of this service, now in to its fourth year, of delivering palliative care services to patients with chronic respiratory disease.

Israel.

Dion Smyth's review of palliative nursing on the internet.

Research Roundup.

Synopses of a selection of recently published research articles of relevance to palliative care.