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.

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.

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 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.

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.

Research Roundup.

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

Priorities of palliative care: comparison of perspectives of patients and nurses in a haemodialysis ward in Iran.

BACKGROUND: Palliative care is an important branch of nursing care. Patients with end-stage renal disease, owing to the chronic nature of the disease, will require palliative care, with nursing staff being responsible for delivering these services. Understanding the priorities of this type of care from the perspective of patients and nursing staff can be helpful in delivering it effectively and efficiently. This study was conducted to determine and compare palliative care priorities from the perspectives of patients and nursing staff in a haemodialysis ward in Iran. METHOD: This research is a cross-sectional and descriptive-analytic study with a sample size equal to the research population (322 patients and 45 nursing staff) in a haemodialysis ward in Kerman, Iran. Data were collected using two self-administered questionnaires that included demographic information and palliative care priorities. Data were analysed using SPSS19 with central tendency and dispersion indicators (frequency, percentage, mean and standard deviation, Mann-Whitney U-test, Kruskal-Wallis, independent t, ANOVA and one-way ANOVA). The significance level was P<0.05. RESULTS: The mean total score (± standard deviation) of palliative care priorities from the patients' and nurses' perspective was 268.83±3.90 and 271.11±29.76, respectively, which was categorised for both groups as 'high priority'. From the patients' perspective, the highest mean score was obtained from 'supporting patient with insurance concerns', while the lowest mean score was derived from 'managing diarrhoea'. The nurses also believed that 'managing and relief of pain' had the highest priority and 'bloating' had the lowest priority in palliative care. From the perspective of both groups, holistic support and relief of physical disorders had the highest and lowest mean scores, respectively. Further, the mean scores of palliative care priorities did not differ significantly from the perspective of patients and nursing staff in the haemodialysis ward (P=0.68). CONCLUSION: Palliative care is a high priority for both haemodialysis patients and nursing staff and both groups prioritised it similarly. As palliative care has not yet been initiated formally across all treatment centres in Iran, it is necessary to prioritise its inclusion within the renal and haemodialysis wards in Iran and provide further training or education for nurses to ensure they are equipped to deliver effective and informed palliative care.

Palliative care: Kuwait.

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

Preparing Nurses for Palliative Care in the NICU.

BACKGROUND: Neonatal intensive care unit (NICU) nurses require knowledge and skill to meet the unique needs of infants and families. Increasingly, principles of palliative care are being integrated into the NICU setting to improve the quality of care. PURPOSE: The purpose of this article is to describe the efforts of the End-of-Life Nursing Education Consortium (ELNEC) project and its Pediatric Curriculum, which began in 2003 to provide this education, and to also describe efforts by nurses to implement the training into their practice settings. METHODS: The ELNEC Pediatric Palliative Care (ELNEC-PPC) project is a train-the-trainer educational program and evidence-based curriculum. FINDINGS/RESULTS: Participants attend a course or receive online training and then apply the education to implement improved practices in areas such as symptom management, care at the time of death, and bereavement support for families. IMPLICATIONS FOR RESEARCH: Experiences with ELNEC-PPC have demonstrated that nurses can implement the curriculum to improve care. IMPLICATIONS FOR PRACTICE: Continued attention to palliative care in this setting is needed, and future research is needed to evaluate the outcomes of this education and practice change.

Nursing Staff Needs in Providing Palliative Care for Persons With Dementia at Home or in Nursing Homes: A Survey.

PURPOSE: This study aimed to evaluate what types and forms of support nursing staff need in providing palliative care for persons with dementia. Another aim was to compare the needs of nursing staff with different educational levels and working in home care or in nursing homes. DESIGN: A cross-sectional, descriptive survey design was used. METHODS: A questionnaire was administered to a convenience sample of Dutch nursing staff working in the home care or nursing home setting. Data were collected from July through October 2018. Quantitative survey data were analyzed using descriptive statistics. Data from two open-ended survey questions were investigated using content analysis. FINDINGS: The sample comprised 416 respondents. Nursing staff with different educational levels and working in different settings indicated largely similar needs. The highest-ranking needs for support were in dealing with family disagreement in end-of-life decision making (58%), dealing with challenging behaviors (41%), and recognizing and managing pain (38%). The highest-ranking form of support was peer-to-peer learning (51%). If respondents would have more time to do their work, devoting personal attention would be a priority. CONCLUSIONS: Nursing staff with different educational levels and working in home care or in nursing homes endorsed similar needs in providing palliative care for persons with dementia and their loved ones. CLINICAL RELEVANCE: It is critical to understand the specific needs of nursing staff in order to develop tailored strategies. Interventions aimed at increasing the competence of nursing staff in providing palliative care for persons with dementia may target similar areas to support a heterogeneous group of nurses and nurse assistants, working in home care or in a nursing home.

Palliative care nurses' strategies when working in private homes-A photo-elicitation study.

AIMS AND OBJECTIVES: To explore palliative care nurses' work experiences caring for patients at the end of life in private homes. BACKGROUND: The home continues to be a desired place for care and dying; however, professional competence is needed and specialist palliative care nurses play a crucial role, often highly valued by patients and their family members. The private home as a physical work environment for nurses is explored, with both positive and negative aspects being described. To ensure future high-quality end-of-life care, there is a need to describe how palliative care nurses work in private homes. DESIGN: Interpretative descriptive. METHODS: Participant-generated photographs were used in conjunction with follow-up interviews with ten palliative home care nurses. Interpretive description was used for analysis. This study follows the COREQ checklist. RESULTS: The analysis process resulted in four constructed themes, presented here as strategies used by palliative care nurses: adjusting interactions and actions depending on the environment when entering each unique private home; supporting patients and family members in finding a balance between self-care, independence and safe care; guiding patients and family members towards and through environmental changes supporting end-of-life care at home; and using transitions between homes to reflect, recuperate and prepare. CONCLUSION: Working as a palliative care nurse in private homes clearly requires a variety of skills and competences, here operationalised in different strategies used to promote high-quality care. RELEVANCE TO CLINICAL PRACTICE: Palliative care nurses' considerations, insights and competence when performing end-of-life care in the diverse environments of private homes can contribute to the development of clinical practice. Knowledge about strategies can be used in nursing practice during everyday work, in nursing education and in the organisation of care, and can inform policy to ensure future high-quality palliative home care.

A gap between the philosophy and the practice of palliative healthcare: sociological perspectives on the practice of nurses in specialised palliative homecare.

Palliative care philosophy is based on a holistic approach to patients, but research shows that possibilities for living up to this philosophy seem limited by historical and administrative structures. From the nurse perspective, this article aims to explore nursing practice in specialised palliative homecare, and how it is influenced by organisational and cultural structures. Qualitative, semi-structured interviews with nine nurses were conducted, inspired by Bourdieu. The findings showed that nurses consolidate the doxa of medicine, including medical-professional values that configure a control-oriented, positivistic approach, supported by the organising policy for clinical practice. Hierarchically, nurses were positioned under doctors: medical rounds functioned as a structuring structure for their working day. They acted as medical assistants, and the prevailing medical logic seemed to make it difficult for nurses to meet their own humanistic ideals. Only short time slots allowed nurses to prioritise psychosocial needs of patients and relatives. Point-of-actions had high priority, added financial resources and ensured that budgets were allocated. Weekly visits made it possible for nurses to measure, control and govern patients' drugs and symptoms which was a necessity for their function as medical assistants. The findings challenge nurses to take on an ethical point of view, partly to ensure that patients and their families receive good palliative care focusing on more than medical issues and logic, and partly to strengthen the nurses' profession in the palliative field and help them implement palliative care philosophy in practice.

A Public Health Approach to Palliative Care in the Canadian Context.

Palliative care helps improve the quality of life of individuals facing life-limiting illness throughout the course of their disease. In Canada, delivery and access to palliative care has been fraught with challenges including differential availability of services based on geography, funding, language, and socioeconomic status. Many groups, including the World Health Organization, have advocated for a public health approach to palliative care as an antidote to fragmented service delivery. Multiple scholars, academics, and public health advocates have suggested that a public health approach to palliative care can help with issues of access, equity, and cost. Through the lens of Kingdon's Multiple Streams Framework, this commentary will explore potential reasons why a public health approach to palliative care has not been adopted in the Canadian context and why this is an opportune time to consider this policy innovation. The Compassionate Communities concept is discussed as a potential solution to a public health approach to palliative care delivery.

Community knowledge of and attitudes to palliative care: A descriptive study.

BACKGROUND: Palliative care is predominantly accessed late in the course of an illness, despite evidence to suggest the benefits of early engagement. Strategies are required to reduce the barriers to the delivery of palliative care. AIM: To describe community understandings of and attitudes to palliative care and explore characteristics significantly associated with favourable attitudes towards palliative care. DESIGN: Cross-sectional survey data were collected including several sociodemographic characteristics, knowledge of palliative care and attitudes to palliative care. Correlational analyses identified factors related to positive attitudes to palliative care. Those of significance (p ⩽ 0.01) were examined using a multiple regression model to determine their predictive value. SETTING/PARTICIPANTS: A community-based sample of consecutive English-speaking adults who volunteered their participation in response to a study advertisement distributed online through established community groups. RESULTS: A total of 421 participants (75% female, mean age: 51 ± 15.1) reported a median of at least three misperceptions of palliative care. Older age, previously undertaking a caregiving role, knowing someone who had received palliative care and reporting more accurate knowledge of palliative care significantly predicted favourable attitudes to palliative care (adjusted R2 = 0.24, F(8, 333) = 13.2, p < 0.001). Other factors typically associated with health literacy such as tertiary education, working at a medical facility and speaking a language other than English at home were not predictive. CONCLUSION: Gaps in knowledge about palliative care exist in community, which may limit citizen's potential access to quality care in the event of serious illness. These results point to a role for public education programmes, which may, in turn, also shift attitudes to palliative care.