Palliative Care Sector Research Articles

Understanding priorities of care: An assessment of FAMCARE-2 satisfaction surveys and thematic analysis in community palliative care

Background The palliative care sector currently faces cumulative challenges and finite resources to meet population needs. To optimise the effectiveness and efficiency of palliative care services, it is necessary to understand care needs and aspects prioritised by patients and families. Deepening our understanding of their experience and preferences will direct the sector’s limited resources toward achieving optimal care in the place of choice. Aim To assesses patient and carer satisfaction of a community palliative care service and to identify common themes that impact the experience of care, and the aspects of care that are important to them. Method A single-centre, prospective study exploring patient and carer satisfaction of two cohorts (patients receiving standard palliative care, or additional and intensive care support) via the Bupa Palliative Care Choices (BPCC) programme. A tool specifically designed to measure satisfaction with palliative care was utilised. Survey comments in the BPCC cohort were analysed thematically. Results Survey response rate was 35% and satisfaction results across all domains were high in both cohorts (very satisfied/satisfied >90%). Thematic analysis of comments identified priorities of care being emotional support for the patient and family, availability of the palliative care team, a focus on patient dignity, and provision of information relating to the patient’s condition and illness trajectory. Conclusion This study provides insights into patient and family priorities of care and identifies areas of need as emotional support, availability of and access to 24-hour care, respecting patient’s dignity, and transparent discussions regarding the patient’s condition and illness trajectory.

Advance Care Planning in India: Current status and future directions. A short narrative review

India is undergoing economic, demographic and epidemiologic transitions. The healthcare industry is expanding rapidly as the burden of non-communicable diseases increases. The Indian Supreme Court [1] has recently enabled Advance Medical Directives (AMD). Implementation of Advance Care Planning (ACP) will depend on civil society and the palliative care sector until government support is available.

Reflexões de profissionais da enfermagem sobre cuidados paliativos

Abstract Palliative care aims to provide quality of life for patients and family, seeking to alleviate problems and symptoms, focusing on relieving suffering. The nursing team extensively participates in this care, which can emotionally overload the professional. Hence, this descriptive, qualitative, and exploratory study sought to clarify the feelings of nursing professionals working in palliative care. Data was collected by a semi-structured script applied to ten nursing professionals from the palliative care sector of a hospital. Emotional overload and difficulties in addressing certain feelings were observed in the interviewees. Results show a lack of strategies to mitigate these overloads in the work environment and the lack of palliative care in the health curricula. Some of the feelings described were difficult to manage, especially by less experienced professionals.

Studying the relationships between authentic leadership, structural empowerment, and civility in the palliative care sector in Portugal

PurposeThis paper aims to propose a model studying the relationship of authentic leadership (AL), structural empowerment (SE) and civility in the palliative care sector. This model proposes SE as a mediator between AL and civility.Design/methodology/approachData was collected from 213 employees working in five major public palliative care hospitals in central Portugal. The study sample was predominantly female (80.3%) and the response rate was 42.6%. Variables were measured using the Authentic Leadership Inventory, Workplace Civility Scale and Conditions of Work Effectiveness Questionnaire II scales. Hayes’ PROCESS macro for mediation analysis in SPSS was used to test the hypothesized model.FindingsResults suggest that AL has a significant positive direct relationship with both SE and civility. Furthermore, SE demonstrated to play a partial mediation effect between AL and civility.Practical implicationsThis study may be of use for healthcare administration encouraging the development of AL, suggesting that the more leaders are seen as authentic, the more employees will perceive they have access to workplace empowerment structures and a civil environment.Originality/valueConsidering the mainstream literature in healthcare management, to the best of the authors’ knowledge, this is the first study to date to integrate the relation of AL, SE and civility in the palliative care sector. Further, the research model has not previously been introduced when considering the mediating role structural empowerment can play between AL and civility.

Steps towards equitable care: creating web pages to highlight diversity for Australia’s aged care and end of life care workforce.

The impact of Australia's diverse population on the aged care sector has been acknowledged, with the Royal Commission into Aged Care Quality and Safetyfindings providing evidence of the importance of population diversity for consumer-directed and person-centred care. Similarly, the Aged Care Quality Standards and Aged Care Diversity Framework acknowledge the diversity of Australia's ageing population and potential implications for equitable access to care and the ensuing importance of culturally appropriate and culturally safe care. This paper reports on the development of informational web pages and utilisation findings for use by the aged care workforce supporting diverse populations. Content was created for the End of Life Directions for Aged Care website, based on rapid review findings relating to barriers and limitations for people accessing equitable care in the aged care and palliative care sectors. Website pages containing embedded links to useful content and resources for health professionals and care workers who work with older diverse adults are shown to be well received among users. As Australia's future population will age with increasing diversity markers, with implications for aged care and palliative care service provision, workforce access to up-to-date, relevant and evidence-informed information on best practice non-clinical support for individuals from diverse backgrounds towards the end of life promotes a person-centred care approach. Access data shows that the website content is being utilised increasingly over time and suggests that it is filling a gap in comprehensive and accessible end of life resources that have been missing from the Australian aged care and palliative care workforce.

Comunicação de más notícias na perspectiva de médicos oncologistas e paliativistas

Abstract: Introduction: Communication is essential to medical practice; however, it is constantly performed inadequately, mainly in the context of communicating bad news. The bad news is that it causes a negative change in the patient’s life, resulting in an unpleasant change and modifying his future perspective. In Western medicine, due to the predominance of the curative model, bad news is understood as failure or incapacity of professional competences, causing physicians to distance themselves and causing patient dissatisfaction. Given these circumstances, the SPIKES, P-A-C-I-E-N-T-E, and Class communication protocols emerged. Objective: To evaluate the dynamics of bad news, with respect to the use of specific protocols and the main difficulties experienced, as well as to identify the influence of communication on the doctor-patient relationship. Method: This is a descriptive study with a qualitative methodology, using a semi-structured interview script prepared by the authors. Twelve interviews were carried out with physicians from the Oncology and Palliative Care sectors of the Instituto de Medicina Integral Prof. Fernando Figueira (IMIP), which were recorded and transcribed for further analysis. The data was categorized according to Minayo’s proposal. Results: The approach to bad news was very similar among professionals, regardless of the use of communication protocols, with SPIKES being the best known among them. The study revealed that the main difficulties faced by physicians when communicating bad news are related to the environment and time of consultation, high patient demand, doctor-patient-family bond and the medical feeling of not meeting expectations or being frustrated by the experienced situation. A clear influence of communication on the doctor-patient relationship was also identified. The need to update the curriculum of medical schools, including theoretical-practical training in communicating bad news, was also verified. Conclusion: The use of bad news communication protocols is not presented as an essential condition for effective communication; however, it allows greater assertiveness and clarity during the conversation. Therefore, the implementation of communication strategies in the health context is suggested, allowing improvements for both professionals and patients.

Synthesis of health promotion concepts in children's palliative care.

Palliative care improves the health of children with a life-limiting condition and appears to draw implicitly on concepts shared with a model of health promotion. However, to date there has been no scrutiny about how this relationship may shape understanding about children's palliative care. To explore the influence of health promoting concepts on children's palliative care models, policies and guidelines. Health and social care databases were searched for policies, models and guidelines published between 2000-2018. Additional searches of professional national and international healthcare websites, children's palliative care charities and UK and Ireland government websites were conducted. A best fit framework synthesis was used. A total of 55 policies and guidelines were reviewed for the framework synthesis. Eight themes were generated: (1) health promoting children's palliative care policy and guidelines; (2) planning ahead; (3) creating a supportive environment; (4) enabling coping and independence; (5) reorienting children's palliative care sectors; (6) the lengthening trajectory of need for support; (7) strengthening community engagement in children's palliative care; and (8) quality of life and value-based ideologies. The best fit framework synthesis confirmed a conceptual relationship between children's palliative care and health promotion. This is captured in a new model that will extend professionals' understanding.

Dying with disability: a disability and palliative care intersectoral partnership framework

People with intellectual disabilities have poor end-of-life experiences compared with other community members. Few strategies are in place to ensure they receive end-of-life care tailored to their specific needs. More is known about “what” constitutes quality end-of-life care for people with intellectual disabilities, and the barriers to achieving these outcomes, than “how” to overcome these barriers. The expertise of both the palliative care and disability sectors are needed, at national, state, regional, and local levels, to address the causes that result in poor end-of-life experiences for people with intellectual disabilities, their families, and carers. This study developed an intersectoral disability and palliative care policy and practice partnership framework using a modified Delphi approach to integrate the key findings of two studies that provided guidance on what good end-of-life care looks like for people with intellectual disabilities: the Disability Healthy End of Life Program service model with the European Association of Palliative Care Consensus Norms for Palliative Care of People with Intellectual Disabilities in Europe. The intersectoral framework developed from this study is solution-focused and addresses the challenges of achieving quality practice.

Benefits of Structured Engagement with Target Audiences of a Health Website: Study Design for a Multi-Case Study.

Access to evidence and practice knowledge precedes use, but availability does not guarantee reach and uptake by intended audiences. The CareSearch project provides online palliative care evidence and information to support health and aged care professionals as well as patients, carers and families to make informed decisions about care at the end of life. Already established in the palliative care sector, CareSearch commenced planning to extend its reach, and ensure website use is maximised for different audiences. This paper reports on the development of the Engagement Framework which will be used to guide and deliver an Engagement Project which will actively seek feedback and insights from intended users in a structured process. The process for developing the Engagement Framework commenced with a literature review of approaches used in knowledge translation, implementation science, and social marketing. The Engagement Framework comprising eight steps was then developed. The Engagement Framework outlines the series of tasks to be undertaken by team members when working with three target groups (Aged Care; Allied Health; and Patients, Carers and Families). A process/formative evaluation collecting data using qualitative methods is also described for use in the subsequent Engagement Project. The evaluation will explore the experiences of project participants as well as staff implementing the engagement activities. The three target groups will enable a cross-case comparison of the strengths and weaknesses of the approach. Planning, implementing and evaluating engagement with intended audiences, offers one mechanism to identify ways to increase interaction and integration with knowledge users.

The role of ambulance services in reducing the gaps in access to end-of-life care: from conversations to policy

Reducing the gap between the need for and access to effective and best practice care at the end-of-life is a goal of the Australian palliative care sector. Largely absent from the suite of plans, strategies and frameworks that map Australia’s path to quality end-of-life care for all patients isPalliatiev CAre Australia the role of ambulance services. Instead, patients’ need for these services tends to be characterized as an undesirable consequence of an under-resourced palliative care sector and no longer necessary when the sector is fully resourced. We hypothesize that one reason for this characterization is that the ambulance and palliative care sectors have fundamentally different perspectives of end-of-life care. We conclude that further if the palliative care sector were to partner with ambulance services, the gap between the need for and access to end-of-life care would be reduced more rapidly and cost effectively.

What do young adults know about palliative care? A cross-sectional survey

ObjectivesA public health approach to palliative care that reorientates care towards the public is advocated in global policy. The public are drivers in identifying care priorities and partners in finding solutions to care issues; however, a necessary prerequisite is that the public knows what palliative care is and what it can achieve. The aim of this study was to investigate what young adults, an important cohort of the public, know about palliative care and identify key predictors of knowledge. Study designThis is a cross-sectional online survey. MethodsA cross-sectional online survey measured knowledge of palliative care using the Palliative Care Knowledge Scale (PaCKS), with young adults (aged 18–29 years) recruited from a university in the UK. Data relating to demographic characteristics and familiarity and experience of palliative care were collected, with descriptive, bivariate and multivariate analyses undertaken to determine respondents' knowledge levels and key predictors. ResultsIn total, 83% (n = 710) of respondents (n = 859) had heard of the term palliative care. The mean score on the PaCKS was 8.87 (standard deviation = 3.4, range = 0–13); men had lower levels of knowledge (P = 0.016). Most respondents were aware that palliative care is not specifically for those with cancer or exclusively for older populations. They were unsure of timing and other key aspects reporting significant levels of ‘I don't ’know’ responses. Linear regression analysis demonstrated that familiarity and experience of palliative care moderated demographic influences (age, gender, education level) on knowledge (β = 0.45, P < 0.001). ConclusionsThe findings suggest that despite high levels of awareness and familiarity with the term, significant numbers of respondents indicated a lack of knowledge of palliative care rather than inaccurate knowledge. This suggests the need for public health organisations to partner with palliative care sectors to develop and disseminate clear unequivocal messaging relating to the breadth of palliative care that both informs and engages young adults.

Factors influencing nurse retention within children's palliative care.

Retention of staff presents major challenges within children's palliative care; this has substantial implications for children, families and the nursing workforce. To address this, a programme was undertaken that provided pathways of professional development for senior nurses working in this field. This study reports the views of nurses completing this programme, the overall project manager (PM) and the day-to-day programme lead (PL) as well as factors that influence nurse retention within children's palliative care nursing. The study drew on an Appreciative Inquiry approach that comprised of interviews with the PM and PL as well as focus groups and questionnaires with senior nurses from the children's palliative care sector, who participated in the training programme. Thematic analysis of data from interviews and focus groups revealed factors influencing nurse retention: speciality, positivity and making a difference, support, provision of adequate resources, tailored education/professional development and resilience. These themes were supported by the questionnaire findings. The programme was perceived as having a positive influence on nurse retention within the children's palliative care workforce. In addition, it was felt to be very beneficial in terms of shared learning and development. Participants highlighted the need for similar opportunities in the future.

Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare

Background: Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life. Aim: To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage. Design: An interpretive descriptive study employed in-depth, qualitative interviews to explore participants’ reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach. Setting/participants: Twenty-one workers employed within three public services in Western Sydney were recruited. Results: Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural. Conclusions: Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.

PERCEPÇÃO DA ENFERMAGEM SOBRE AVALIAÇÃO DA DOR ONCOLÓGICA

A dor é um fenômeno complexo e de difícil mensuração, principalmente na população com câncer em tratamento paliativo. Portanto, a equipe de enfermagem é extremamente importante nesse processo. Assim, o presente estudo objetivou analisar a percepção da equipe de enfermagem frente à avaliação da dor em pacientes com câncer em cuidados paliativos. Tratou-se de um estudo descritivo de abordagem qualitativa, realizado com 10 profissionais de enfermagem (três enfermeiros e sete técnicos de enfermagem) de um hospital de grande porte referência em oncologia localizado na cidade de Goiânia-GO. A coleta de dados ocorreu em novembro de 2017 no setor de cuidados paliativos, por meio de um questionário semiestruturado contendo perguntas abertas e fechadas. Dentre os pesquisados, a idade média predominante foi de 44,5 anos. Com predominância o sexo feminino (80%) todos os profissionais com mais de 4 anos de experiências no setor. Os dados foram analisados e os resultados apontaram que a avaliação da dor ainda continua sendo um processo negligenciado, sobretudo no tratamento paliativo. Com base nesses resultados, torna-se necessário uma capacitação dos profissionais de enfermagem no que se refere à importância da avaliação e, sobretudo no manejo da dor.&#x0D;

Collaborative Networks in Primary and Specialized Palliative Care in Switzerland - Perspectives of Doctors and Nurses

Purpose:To date, information about collaborative networks of doctors and nurses in palliative care is still scarce, yet of great importance in revealing gaps in collaboration. This paper investigates the collaboration frequencies of medical doctors and nurses within, and across, different settings of palliative care.Methods:The study was based on a Swiss national survey on “Collaboration and cooperation in Palliative Care”. The subjects surveyed included service providers in the primary and specialized palliative care sectors, as well as support services (N=1111). Information about ties between providers was gathered by asking professionals to estimate the frequency of interaction with other professionals within the last year, on a daily, weekly, monthly and yearly basis. Social network analysis was used to assess the interaction patterns of nurses and doctors (N= 728) in primary and specialized care settings.Results:Visual representations indicated that, contrary to primary care settings, healthcare providers in specialized care settings reported of numerous interactions with other professions. In primary care, general practitioners reported the least frequent interactions with other professions. Of all providers investigated, specialized doctors in hospitals and hospices reported the densest collaborative networks.Implication:Gaps regarding collaboration in Swiss palliative care provision were revealed. Based on the results of the study, recommendations on how to improve service quality by strengthening the interaction patterns of general practitioners, as well as community-based palliative care, are provided.

CARING FOR OLDER INDIGENOUS PEOPLE WITH CO-MORBIDITIES AT END OF LIFE

The number of deaths among older Māori, the indigenous people of New Zealand, are expected to increase by 48% by 2030. Colonization has had a varied impact on Māori ways of being and end-of-life care has become more difficult. Many have become disenfranchised from their families, peoples, lands and culture. Pae Herenga, a for-Māori by-Māori with-Māori qualitative research project, investigated the traditional Māori end-of-life care customs that Māori families used while caring for someone who was dying. An online education resource was developed to support Māori families, their communities and the palliative care sector. Interviews were conducted with 60 Māori participants including older many people (aged over 70). The findings found that families rich in cultural knowledge were proficient in caring for a loved one at end-of-life irrespective of their social or economic position. Cultural care values such as unconditional love, companionship, reciprocity, supportive relationships and collective decision making safeguarded care preferences of the dying. Access to traditional knowledge and traditional healing practices, and an understanding of spirituality helped to strengthen and prepare the dying person, and their families, on the end-of-life journey. The study also found that those families connected to communities’ rich in Māori cultural resources, such as knowledgeable older Māori people, were well supported by the community at end-of-life. This study highlights that Māori use of traditional care customs in all care settings can better support a ‘good death’ from a cultural perspective.

Operation of a hospital palliative care service: a fourth-generation evaluation.

Qualitatively evaluate the operation of a palliative care service in oncology. Qualitative study conducted in a service in southern Brazil based on a fourth generation evaluation. Between September 2014 and June 2015, 460 hours of operation were observed, and 45 semi-structured interviews and five negotiation meetings were conducted; data were analyzed using the constant comparative method. Potential services are: provision of outpatient palliative care, home and inpatient care provided by a multidisciplinary and support team, meeting the patient's biological, psychological, social and spiritual needs. Study limitations: ineffective communication between clinical and surgical oncology and palliative care sectors, lack of specialized training for professionals and in interpersonal relationship issues among team members. For palliative care progress in the service, some arrangements are required to enhance integrality of care.

Māori: living and dying with cardiovascular disease in Aotearoa New Zealand.

This article provides an informed perspective on cardiovascular disease (CVD) and palliative care need among Māori New Zealanders. High Māori CVD risk factors will contribute to a sharp increase in older Māori deaths which has implications for health and palliative care service provision. CVD is New Zealand's leading cause of premature deaths and disability among Māori. A projected rise in older Māori deaths within the next 30 years will require increased palliative care. However, accessing palliative care and obtaining and understanding information can be challenging for families who are already often overburdened with high social and economic disadvantages. Meeting the high financial costs associated with end-of-life care make living with CVD challenging. Engaging with the health system's biomedical approach when holistic care is preferable can be a major barrier. Māori families provide the bulk of care at end-of-life, but they can become fatigued with the challenges that accompany long-term progressive illnesses, such as CVD. They are also burdened by the financial costs associated with end-of-life. It is often difficult for Māori to access palliative care and to obtain and understand information about the illness and treatment. Navigating an unfamiliar and complex health system, low health literacy among Māori and poor relationship building and communication skills of health professionals are significant barriers. Cultural safety training would help to increase health and cardiovascular professionals' cultural understanding of Māori and their holistic end-of-life preferences; this could go some way to strengthen rapport building and communication skills necessary for effective engagement and informational exchanges. Increasing the Māori palliative care workforce and introducing cultural safety training among health professionals could help to bridge the gap. A current study to gather traditional care customs and present these to whānau and the health and palliative care sectors in the form of an online resource could contribute to this decolonizing objective.

Hospice UK National Conference 2018

Foreword Hospice UK's annual conference is the national hospice and palliative care charity's flagship event, bringing together everyone involved in leading hospice, palliative and end-of-life care for adults, children and young people. In 2018, the conference spanned two days and was held at the International Centre in Telford, Shropshire. Its theme was Transforming Palliative Care and it provided a unique forum for delegates to discuss current and forthcoming issues facing the hospice and palliative care community, and to discover new ways of thinking from outside of the sector. Packed with stimulating plenary and parallel sessions, and opportunities to network with peers and meet major providers of services and products, the conference combined high-level strategic thinking, application into practice and lessons from real-world examples. More than 800 delegates from across the hospice voluntary sector, the NHS and academia attended the conference. They included a wide cross-section of people from the hospice and palliative care sector, such as chief executives, trustees, clinical directors, nurses and doctors, as well as senior staff working in income generation, communication, operations and HR. Leaders of NHS hospices, hospitals and other care providers also attended the event.

Toku toa, he toa rangatira: A qualitative investigation of New Zealand Māori end of life care customs

Informal end of life caregiving will increase over the next 30 years in line with the anticipated increase in older Māori deaths. Of concern, New Zealand’s neo-colonial trajectory (loss of lands, cultural disenfranchisement, urban migration, ethnic diversity, global diaspora and changing whānau (family, including extended family) compositions) has restricted some indigenous whānau from retaining their end of life care customs. This article reports on a qualitative pilot study on Māori whānau end of life care customs undertaken to explore how those care customs contribute towards strengthening whānau resilience and bereavement. Five whānau, including thirteen individuals from diverse iwi (tribes), took part in one of six face to face interviews. Kaupapa Māori research methods informed the analysis. The findings report a high level of customary caregiving knowledge among older whānau carers as well as a cohesive whānau collective support system for this group. Tribal care customs were handed down via 1) enculturation with tribal principles, processes and practices 2) observing kaumātua processes and practices and 3) being chosen and prepared for a specific care role by kaumātua. Younger participants had strong cultural care values but less customary care knowledge. The pilot concluded the need for a larger systematic qualitative study of Māori tikanga (customs) and kawa (guidelines) as well as the development of participant digital stories to support a free online educational resource to increase understanding among whānau, indigenous communities and the health and palliative care sectors.