Palliative Care Organization Research Articles

Making Measurement Matter: How Will Your Organization Engage with the New Palliative Care Quality Collaborative? (TH317)

•Describe current need for data on programmatic and clinical quality and the challenges faced by palliative care programs trying to grow and develop their teams, report on quality measures, and improve the care for their patients.•Review the advantages and opportunities when palliative care organizations measure and compare quality across peers and have the opportunity to network with supportive colleagues.•Discuss the services provided by the PCQC in assisting palliative care practices today in program development, measurement, and reporting, and describe how PCQC will monitor access to palliative care across the nation. All people living with a serious illness deserve high-quality care focused on their own priorities and values. Yet, palliative care is not available for all who could benefit, and measurement and improving care in the context of the proliferation of requirements to measure quality from health systems, payers, and accrediting bodies can challenge busy organizations. To assist palliative care programs in improving the availability and quality of care, AAHPM leads an effort to create a unified registry to track the prevalence of palliative care programs and measure the quality of program operations and clinical care delivery. With funding from the Moore Foundation, CAPC, NPCRC, AAHPM, PCQN, and GPCQA have joined forces to create the Palliative Care Quality Collaborative (PCQC). Beginning in 2020, PCQC member organizations will be able to: A) Access feasible and standardized data collection on programmatic and clinical quality, B) Learn quality measurement and quality improvement skills within a community of like-minded organizations, C) Work collaboratively to address improvement, and D) Keep up-to-date with the evolving landscape of quality measurement in palliative care. These goals require the combined experience of those providing care every day with the quality measurement expertise of the largest membership organizations in specialty palliative care. We have created the PCQC as a “for us, by us” strategy. In this interactive session, we will describe how palliative care programs can engage with and benefit from PCQC's registry, peer comparison and national prevalence reporting, quality improvement coaching, virtual learning, and community of peers and experts. The PCQC's approach is to empower those who deliver the care to have an active collective voice in improving that care. The 2020 Annual Assembly will be the first formal introduction of—and invitation to join—the PCQC to the Academy and HPNA members.

An EAPC white paper on multi-disciplinary education for spiritual care in palliative care

BackgroundThe EAPC White Paper addresses the issue of spiritual care education for all palliative care professionals. It is to guide health care professionals involved in teaching or training of palliative care and spiritual care; stakeholders, leaders and decision makers responsible for training and education; as well as national and local curricula development groups.MethodsEarly in 2018, preliminary draft paper was written by members of the European Association for Palliative Care (EAPC) spiritual care reference group inviting comment on the four core elements of spiritual care education as outlined by Gamondi et al. (2013) in their paper on palliative care core competencies. The preliminary draft paper was circulated to experts from the EAPC spiritual care reference group for feedback. At the second stage feedback was incorporated into a second draft paper and experts and representatives of national palliative care organizations were invited to provide feedback and suggest revisions. The final version incorporated the subsequent criticism and as a result, the Gamondi framework was explored and critically revised leading to updated suggestions for spiritual care education in palliative care.ResultsThe EAPC white paper points out the importance of spiritual care as an integral part of palliative care and suggests incorporating it accordingly into educational activities and training models in palliative care. The revised spiritual care education competencies for all palliative care providers are accompanied by the best practice models and research evidence, at the same time being sensitive towards different development stages of the palliative care services across the European region.ConclusionsBetter education can help the healthcare practitioner to avoid being distracted by their own fears, prejudices, and restraints and attend to the patient and his/her family. This EAPC white paper encourages and facilitates high quality, multi-disciplinary, academically and financially accessible spiritual care education to all palliative care staff.

Emotional Bond: The Nature of Relationship in Palliative Care for Cancer Patients.

Aim:Relationship between care providers and cancer patients is one of the main elements in providing healthcare to these patients. Understanding the characteristics and the nature of the relationship is a basis for further organization of palliative care and will enhance the performance of care providers. The purpose of this study was to investigate the nature of the relationship in palliative care for cancer patients.Methods:In this qualitative study, 16 participants with rich experiences in the field of cancer patient's palliative care were selected by purposive sampling. A semi-structured face-to-face interview was conducted with each of the participants. After data collection, all interviews were transcribed and reviewed, and then primary codes, sub-categories, and categories were extracted.Results:Data analysis emerged three categories; being alongside the patient, establishing and maintaining cordiality relationship, and mutual understanding with the patient. Moreover, an emotional bonding was the main theme that defined the nature of relationship between the care provider team and cancer patients in a palliative care approach.Conclusion:Effective relationship based on emotional bonding is the foundation of palliative care in cancer patients. Considering the structures and palliative care settings in health systems, it is possible to provide training programs regarding the strategies related to establishing emotional bond for effective delivery of palliative care.

More Therapy, Earlier, Can Prevent Declines

President and CEO, National Hospice and Palliative Care Organization Correspondence: Edo Banach, JD, National Hospice and Palliative Care Organization, 1731 King Street, Alexandria, Virginia 22314 ([email protected]). The author declares no conflicts of interest.

Leadership in specialist palliative home care teams: A qualitative study.

The aim of this study was to describe team leaders' experiences of facilitators and barriers of leadership in specialist palliative home care teams. For effective teamwork in specialist palliative care, leadership is crucial; however, defining and agreeing on what leadership comprises may be challenging. In palliative care, teamwork is recognized as imperative for multiprofessional perspectives to meet dying patients' and families' needs. Qualitative interviews with 13 team leaders in specialist palliative home care were performed, using the Pettigrew and Whipp framework, and analysed with directed content analysis. Team leaders' experiences of conditions influencing the organisation and delivery of specialist palliative home care is multifaceted and leaders seem conflicted in their approach to the multiple levels of leadership, vision and responsibilities. Team leaders in specialist palliative home care described goals of care on differing levels and, for some, fiscal restraints and external pressures influenced their vision and leadership. Team leaders experienced challenges of leadership in relation to organisational issues, feeling burdened by responsibilities, budget restraints and team size. Team leadership is demanding and complex. In specialist palliative home care, affirming values and enabling vision during times of fiscal strain and external pressures, is challenging. For successful leadership that develops both individuals and the health care team, leaders are recommended to adapt the leadership style to the present situation surrounding the team.

Barriers and Facilitators to Supportive Care for ESRD Dialysis Patients— A Social Worker’s Role

Despite efforts to increase supportive care for patients on dialysis, many barriers continue to exist. This study surveyed dialysis facilitystaff to examine the barriers and facilitators related to providing supportive care to patients on dialysis. This qualitative analysis revealed five barriers: 1) lack of integrated, holistic teams; 2) practitioner beliefs; 3) perceptions of social work competence; 4) time andworkload; and 5) lack of clarity regarding palliative care versus hospice and interpreting Medicare benefits. The analysis also revealed four facilitators related to providing supportive care: 1) integrated, holistic teams, including family involvement; 2) collaboration acrosscare teams; 3) communication and compassion; and 4) formal or regular mechanisms for the review of advance-care plans. Based onthe professional ethics code, social workers can play a role in bolstering their own teams’ capacity to integrate supportive-care practices. Further, using their advocacy skills, social workers can lead efforts to ensure that they and their colleagues have appropriate training and competence in supportive care. Finally, social workers, with their knowledge of community resources, can help foster innovative collaboration between dialysis organizations and palliative care and hospice organizations, in spite of current regulatory and financial barriers.

Quality improvement in hospice settings: perceptions of leaders

PurposeThe purpose of this paper is to explore and examine attitudes and perceptions of leaders on application of quality improvement (QI) strategies in a palliative and hospice care organization.Design/methodology/approachThis study employed qualitative research methodology where leaders working in a hospice and palliative care organization were invited to participate in 45–60-min-long semi-structured interview. Interviews were recorded and transcribed verbatim. Qualitative content analysis was utilized to analyze the data collected during participant interviews.FindingsSeven leaders participated in the interviews. Five themes were developed from data analysis: patient-centered care; continuous QI; leadership involvement and commitment; communication as a foundation for QI; and perceived barriers. Data analysis suggests that use of QI approach in palliative and hospice care enhances the quality of care provided for patients, and can help improve patient satisfaction.Practical implicationsBecause there is a paucity of research on implementation of QI strategies in hospice and palliative care settings, this research can have wide practical implications. This research can provide useful practical tips to leaders as they work on implementing QI projects in their organization.Originality/valueThis manuscript can be of value to leaders, administrators and academicians who are interested in applying QI principles to healthcare processes especially in palliative and hospice care settings. Ability to work with others, solid communication and involvement of employees from all levels can help in streamlining current systems of care.

Palliative care provision in long-term care facilities differs across Europe: Results of a cross-sectional study in six European countries (PACE)

Background: While the need for palliative care in long-term care facilities is growing, it is unknown whether palliative care in this setting is sufficiently developed. Aim: To describe and compare in six European countries palliative care provision in long-term care facilities and to assess associations between patient, facility and advance care planning factors and receipt and timing of palliative care. Design: Cross-sectional after-death survey regarding care provided to long-term care residents in Belgium, England, Finland, Italy, the Netherlands and Poland. Generalized estimating equations were used for analyses. Setting/participants: Nurses or care assistants who are most involved in care for the resident. Results: We included 1298 residents in 300 facilities, of whom a majority received palliative care in most countries (England: 72.6%–Belgium: 77.9%), except in Poland (14.0%) and Italy (32.1%). Palliative care typically started within 2 weeks before death and was often provided by the treating physician (England: 75%–the Netherlands: 98.8%). A palliative care specialist was frequently involved in Belgium and Poland (57.1% and 86.7%). Residents with cancer, dementia or a contact person in their record more often received palliative care, and it started earlier for residents with whom the nurse had spoken about treatments or the preferred course of care at the end of life. Conclusion: The late initiation of palliative care (especially when advance care planning is lacking) and palliative care for residents without cancer, dementia or closely involved relatives deserve attention in all countries. Diversity in palliative care organization might be related to different levels of its development.

Professionals' experiences with palliative care and collaboration in relation to a randomised clinical trial: a qualitative interview study.

International evidence on the outcome of generalist versus specialist palliative care provision in palliative care trajectories is limited and varied. In general, intervention studies can influence the organisation of palliative care practice and professional collaborations. However, randomised clinical trials in palliative care rarely consider the organisational significance of the studies, as experienced by the professionals involved. DOMUS is the abbreviation for a Danish intervention study designed as a randomised clinical trial, investigating an accelerated transition from oncological to specialist palliative care at home for patients with incurable cancer. Alongside conducting the palliative care intervention study, we wanted to discover the perspectives of the healthcare professionals involved. To explore the organisational significance of the DOMUS intervention study as experienced by the professionals involved. A qualitative interview study, using thematic content analysis and inspired by organisational theory. Thirty-eight professionals from four units involved in the DOMUS intervention study took part in 10 groups and six individual interviews. The DOMUS randomised clinical trial intervention influenced and sometimes disrupted both the ways of organising, collaborating and practising palliative care, and patients' and relatives' understanding of their own situation. It did this by (1) referring a broader palliative care target group to specialist palliative care, leading to (2) different palliative care needs, professional tasks, and perceived impact on (3) the organisation of palliative care and (4) professional collaboration. Professionals involved in the DOMUS palliative care intervention found that the study had organisational significance, with an influence on professionals, patients and relatives. Specialist palliative care in Denmark is devoted organisationally and professionally to patients with severe or complex palliative care needs. Hence, new ways of organising palliative care for people in the earlier stages of their disease are needed.

The financing of stand-alone palliative Care Services in Uganda: analysis of the implications for sustainability

BackgroundSustainable funding is key for ensuring the quality and coverage of palliative care services. This study examined the sources of funding for stand-alone palliative care services in Uganda as well as their services financial sustainability plans.MethodsResearchers conducted a cross sectional survey of all stand-alone palliative care organizations that have operated for five or more years. Researchers administered a questionnaire survey and interviews on the audited financial statements, services provided and sustainability plans.ResultsNine of the stand-alone palliative care organizations surveyed had operated for five to 25 years. 93% of the funding for palliative care services comes from donations; while 7% is from income generating activities. 94% of the donations are from external sources. The Government of Uganda’s major contribution is in the form of medicines, training and payment of taxes. All the organizations had good financial records. Six of the fifteen Hospices/palliative care providers had sustainability plans included in their operational manuals. The older organizations (those that had been operational for more than 10 years) had better resource mobilization capacity and strategies.ConclusionThe majority of stand-alone palliative care organizations in Uganda are largely donor funded. They have considerable financial sustainability and fund-raising capacity. Government support is in the form of medicines and training. Based on this study findings, the capacity of the stand-alone palliative care services to raise funds should be increased. The Government of Uganda should include palliative care in the national health system and increase funding for these services.

Attitudes of Hospice Providers Regarding Intrathecal Targeted Drug Delivery for Patients With Cancer

Pain is one of the most commonly experienced and feared symptoms faced by patients with a serious illness. For these patients, intrathecal drug delivery systems (IDDSs) provide greater potency and/or few systemic side effects. However, despite these benefits, the integration and management of IDDS for patients receiving hospice care has not been previous studied. An electronic, 18-question survey was sent to 200 hospice practitioners (physicians, nurse practitioners and nurses) in the state of Minnesota to explore their experience, confidence, and the perceived barriers to caring for patients with IDDS while being cared for on hospice. Providers were identified though mailing lists from the Minnesota Network of Hospice and Palliative Care organization. The survey was administered by the Mayo Clinic Survey Research Center with institutional review board approval. Slightly more than 50% of respondents have ever cared for a patient with an intrathecal pump. If a patient had a pump in place, only 28% of providers expressed confidence in managing their pain. Additionally, only 3 of 10 respondents felt that adjusting an intrathecal pump should be the first option when a patient with an IDDS in place had increased pain. Indeed, the vast majority (over 80%) of respondents preferred the use of systemic therapies for primary pain management. Access to IDDS vendors for changes/refills in the home is identified as another barrier with over 50% of respondents either unaware of an available vendor or reporting no vendor available. There are numerous self-reported barriers to ongoing use of IDDS with patients receiving hospice care.

On organization of palliative medical care

The study provides an analysis of the results of the questionnaire survey of physicians in the Russian Federation with the purpose of determining the competences of medical specialists and practice of palliative care and emerging problems. This article presents and discusses the data obtained during the study.

Non-specialist palliative care: A principle-based concept analysis.

Building palliative care capacity among all healthcare practitioners caring for patients with chronic illnesses, who do not work in specialist palliative care services (non-specialist palliative care), is fundamental in providing more responsive and sustainable palliative care. Varying terminology such as 'generalist', 'basic' and 'a palliative approach' are used to describe this care but do not necessarily mean the same thing. Internationally, there are also variations between levels of palliative care which means that non-specialist palliative care may be applied inconsistently in practice because of this. Thus, a systematic exploration of the concept of non-specialist palliative care is warranted. To advance conceptual, theoretical and operational understandings of and clarity around the concept of non-specialist palliative care. The principle-based method of concept analysis, from the perspective of four overarching principles, such as epistemological, pragmatic, logical and linguistic, were used to analyse non-specialist palliative care. The databases of CINAHL, PubMed, PsycINFO, The Cochrane Library and Embase were searched. Additional searches of grey literature databases, key text books, national palliative care policies and websites of chronic illness and palliative care organisations were also undertaken. Essential attributes of non-specialist palliative care were identified but were generally poorly measured and understood in practice. This concept is strongly associated with quality of life, holism and patient-centred care, and there was blurring of roles and boundaries particularly with specialist palliative care. Non-specialist palliative care is conceptually immature, presenting a challenge for healthcare practitioners on how this clinical care may be planned, delivered and measured.

'So isolation comes in, discrimination and you find many people dying quietly without any family support': Accessing palliative care for key populations - an in-depth qualitative study.

Background:Ensuring palliative care for all under a new global health policy must include key populations, that is, lesbian, gay, bisexual, transgender and intersex (LGBTI) people, and sex workers. Accessibility and quality of care have not been investigated in lower and middle-income countries where civil rights are the weakest.Aim:To examine the accessibility to, and experiences of, palliative care for key populations in Zimbabwe.Design:Qualitative study using thematic analysis of in-depth interviews and focus groups.Setting/participants:A total of 60 key population adults and 12 healthcare providers and representatives of palliative care and key population support organisations were interviewed in four sites (Harare, Bulawayo, Mutare and Masvingo/Beitbridge).Results:Participants described unmet needs and barriers to accessing even basic elements of palliative care. Discrimination by healthcare providers was common, exacerbated by the politico-legal-economic environment. Two dominant themes emerged: (a) minimal understanding of, and negligible access to, palliative care significantly increased the risk of painful, undignified deaths and (b) discriminatory beliefs and practices from healthcare providers, family members and the community negatively affected those living with life-limiting illness, and their wishes at the end of life. Enacted stigma from healthcare providers was a potent obstacle to quality care.Conclusion:Discrimination from healthcare providers and lack of referrals to palliative care services increase the risk of morbidity, mortality and transmission of infectious diseases. Untreated conditions, exclusion from services, and minimal family and social support create unnecessary suffering. Public health programmes addressing other sexually taboo subjects may provide guidance.

Availability of Bereavement Support Services for Those Affected by a Pediatric Death: A Literature Review (TH370C)

•Describe the importance of providing bereavement support services to families impacted by the death of a child.•Describe how to conduct a scoping literature review.•Discuss the limits of existing research related to the availability of bereavement support services for families impacted by the death of a child. Bereavement support is an essential component of palliative care. Yet little is known about the availability of bereavement support services offered to those affected by a pediatric death. To review existing literature related to the availability of bereavement support for families affected by the death of a child (including pre-natal deaths) in the United States (US). We searched five databases (PubMed, Embase. PsycIFNO, CINAHL, and Cochrane Library) using terms related to three concepts: “child death,” “bereavement,” and “support.” We included articles discussing availability of bereavement support services based in the community, hospital, clinic, or a palliative care organization. We excluded articles that focused on bereavement education, case studies or series, specific program descriptions, healthcare provider support, the impact of a child’s death on parents or healthcare providers, adult death, efficacy of bereavement services, activities during the dying period, and programs outside the US. Two people screened articles for those that met our inclusion/exclusion criteria. A third team member resolved discrepancies. Resultant articles were reviewed by two people for content. Our database search identified 2,067 articles, of which 7 met our inclusion/exclusion criteria. Three articles addressed services for all pediatric populations, 3 focused on pregnancy loss, and 1 focused on cancer patients. 4 articles described the types of services available, two of which highlighted variability in the breadth and depth of services offered. 3 articles described service use and noted that minorities are underrepresented. The literature on availability of US bereavement support services for families affected by pediatric death is sparse. Existing literature raises concerns that certain services might be unavailable to some populations. More research is needed to understand why bereavement support services are not uniformly available and to develop programs for underserved populations.

Understanding the Organization of Hospital-Based Palliative Care in a Nigerian Hospital: An Ethnographic Study.

Context:Organization and delivery of palliative care (PC) services vary from one country to another. In Nigeria, PC has continued to develop, yet the organization and scope of PC is not widely known by most clinicians and the public.Objectives:The aim of the study is to identify PC services available in a Nigerian Hospital and how they are organized.Methods:This ethnographic study, utilized documentary analysis, participant observation, and ethnographic interviews (causal chat during observation and individual interviews) to gather data from members of PC team comprising doctors (n = 10), nurses (n = 4), medical social workers (n = 2), a physiotherapist, and a pharmacist, as well nurses from the oncology department (n = 3). Data were analyzed using Spradley's framework for ethnographic data analysis.Results:PC was found to be largely adult patient-centered. A hospital-based care delivery model, in the forms of family meetings, in- and out-patients' consultation services, and a home-based delivery model which is primarily home visits conducted once in a week, were the two models of care available in the studied hospital. The members of the PC team operated two shift patterns from 7:00 am to 2.00 pm and a late shift from 2:00 pm to 7:00 pm instead of 24 h service provision.Conclusions:Although PC in this hospital has made significant developmental progress, the organization and scope of services are suggestive of the need for more development, especially in manpower and collaborative care. This study provided knowledge that could be used to improve the clinical practice of PC in various cross-cultural Nigerian societies and other African context, as well as revealing areas for PC development.

Palliative care in primary care: European Forum for Primary Care position paper.

The aim of this position paper is to assist primary health care (PHC) providers, policymakers, and researchers by discussing the current context in which palliative health care functions within PHC in Europe. The position paper gives examples for improvements to palliative care models from studies and international discussions at European Forum for Primary Care (EFPC) workshops and conferences. Palliative care is a holistic approach that improves the quality of life of patients and their families facing problems associated with terminal illness, through the prevention and relief of suffering by means of early identification and diligent assessment and treatment of pain and other problems, whether physical, psychosocial, or spiritual. Unfortunately, some Europeans, unless they have cancer, still do not have access to generalist or specialist palliative care. A draft of this position paper was distributed electronically through the EFPC network in 2015, 2016, and 2017. Active collaboration with the representatives of the International Primary Palliative Care Network was established from the very beginning and more recently with the EAPC Primary Care Reference Group. Barriers, opportunities, and examples of good and bad practices were discussed at workshops focusing on palliative care at the international conferences of Southeastern European countries in Ljubljana (2015) and Budva (2017), at regular conferences in Amsterdam (2015) and Riga (2016), at the WONCA Europe conferences in Istanbul (2015), Copenhagen (2016), and Prague (2017), and at the EAPC conference in Madrid (2017). There is great diversity in the extent and type of palliative care provided in primary care by European countries. Primary care teams (PCTs) are well placed to encourage timely palliative care. We collected examples from different countries. We found numerous barriers influencing PCTs in preparing care plans with patients. We identified many facilitators to improve the organization of palliative care.

Volunteer Involvement in the Organisation of Palliative Care: Results from a Large-scale Survey of Healthcare Organisations in Flanders and Brussels

Volunteer Involvement in the Organisation of Palliative Care: Results from a Large-scale Survey of Healthcare Organisations in Flanders and Brussels

Integration of oncology and palliative care: a Lancet Oncology Commission.

Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.

The Toll Death Takes: A Glimpse Into Home-Based Palliative Care Provision in India

Millions of people around the world die in pain or continue to live with serious health-related suffering. Palliative care is an approach that attempts to improve the quality of life of patients and their families, by relieving their pain holistically, across physical, psychological, social, and spiritual domains. Palliative care is practiced in a variety of ways in India, but the home-based palliative care model seems to be the most culturally appropriate and economically acceptable. This article analyzes home-based services offered across India by seven leading palliative care organizations, including elements that could be adapted into the country’s public healthcare system, thereby providing relief and solace to the countless suffering, within their very homes.