Helle Ussing Timm

Early integration of palliative care in hospitals: A systematic review on methods, barriers, and outcome

OBJECTIVE According to the World Health Organization (WHO), palliative care (PC) should be available to everyone suffering from life-threatening diseases and should be started early on in the illness trajectory. However, PC is often initiated much later and is restricted to cancer patients. There is a need for more knowledge about how early PC can be implemented in clinical practice. The purpose of our study was to document the best evidence on methods for early identification (EI) of palliative trajectories in cancer, chronic heart failure (CHF), and chronic obstructive pulmonary disease (COPD) populations, and to identify preconditions for early integration of general PC in hospitals and outcomes for patients and relatives. METHOD A comprehensive systematic review of methods, preconditions, and outcomes was conducted via an electronic literature search of publications between 2002 and September 2012. A final sample of 44 papers was reviewed in detail. RESULTS Our study identified disease-specific and general methods for EI of patients who might benefit from PC. Prognostication of end-stage disease based on (holistic) clinical judgment, prognostic factors, and/or care needs are the most frequently recommended methods. A number of interacting disease-, staff-, user-, and organization-specific barriers need to be overcome in order to implement early integration of PC in clinical practice. Early integration of PC may lead to better symptom management, prolonged survival, and better quality of life. SIGNIFICANCE OF RESULTS No methods can be recommended for routine clinical practice without further validation. There is an urgent need to develop and evaluate methods based on the holistic assessment of symptoms or needs. The barriers to early integration of PC are most extensive with regard to CHF and COPD. Professional training and education are recommended to facilitate early implementation of PC. The evidence about outcome is sparse and mostly relates to cancer populations receiving specialized PC.

Support Efforts for Caregivers of Chronically Ill Persons

An increasing number of people today live with chronic diseases that affect their quality of life and that of their families. Health professionals confirm this finding based on their clinical interventions targeting families of chronically ill patients. The aim of this study was to describe and evaluate these interventions. A systematic literature review was conducted, including previous reviews and controlled studies from 1997 to 2007 of interventions targeting caregivers of adults with stroke, diabetes, cardiovascular disease, and cancer.Ten out of the 32 studies included found the interventions to have no effect, whereas effects were found in the other 22 studies in one or more areas, including burden, knowledge level, mastering skills, and satisfaction. The literature review concludes that the impact of these interventions is neither unique nor significant. The defined concepts of the randomized clinical studies appear problematic when implemented and underscore the importance of strict requirements on future randomized, controlled designs.

The DOMUS study protocol: a randomized clinical trial of accelerated transition from oncological treatment to specialized palliative care at home

BackgroundThe focus of Specialized Palliative Care (SPC) is to improve care for patients with incurable diseases and their families, which includes the opportunity to make their own choice of place of care and ultimately place of death.The Danish Palliative Care Trial (DOMUS) aims to investigate whether an accelerated transition process from oncological treatment to continuing SPC at home for patients with incurable cancer results in more patients reaching their preferred place of care and death. The SPC in this trial is enriched with a manualized psychological intervention.Methods/DesignDOMUS is a controlled randomized clinical trial with a balanced parallel-group randomization (1:1). The planned sample size is 340 in- and outpatients treated at the Department of Oncology at Copenhagen University Hospital. Patients are randomly assigned either to: a) standard care plus SPC enriched with a standardized psychological intervention for patients and caregivers at home or b) standard care alone. Inclusion criteria are incurable cancer with no or limited antineoplastic treatment options.DiscussionPrograms that facilitate transition from hospital treatment to SPC at home for patients with incurable cancer can be a powerful tool to improve patients’ quality of life and support family/caregivers during the disease trajectory. The present study offers a model for achieving optimal delivery of palliative care in the patient’s preferred place of care and attempt to clarify challenges.Trial registrationClinicaltrials.gov Identifier: NCT01885637

Interventions concerning competence building in community palliative care services – a literature review

BACKGROUND Studies establish that many incurably ill people would prefer to die at home, whether their final home is their own home or a nursing home. Experience shows that the professionals in palliative care at the basis level need to increase their competences. The purpose of this literature review is to examine experiences with interventions regarding the development of competencies within community palliative care services - in other words, at the individual work places. METHOD The study has been carried out as a literature review of international databases (PubMed/Medline, CHINAL, PsycInfo) with selected key words. RESULTS The review of the literature identified 15 publications which dealt with interventions regarding education and competence building. The publications represent individual studies, only two of which were controlled. All conclude that competence building has a positive effect according to the professionals. It is unknown whether or how patients and relatives feel a positive effect from the interventions just as it is unknown how the development of competencies has actually led to a more developed practice. The effect of local competence building in palliative care in the primary sector is lacking. Methods are needed to further examinations of how a competency has actually led to a more developed practice.

The existential dimension in general practice: identifying understandings and experiences of general practitioners in Denmark.

Abstract Objective: The objective of this study is to identify points of agreement and disagreements among general practitioners (GPs) in Denmark concerning how the existential dimension is understood, and when and how it is integrated in the GP–patient encounter. Design: A qualitative methodology with semi-structured focus group interviews was employed. Setting: General practice setting in Denmark. Subjects: Thirty-one GPs from two Danish regions between 38 and 68 years of age participated in seven focus group interviews. Results: Although understood to involve broad life conditions such as present and future being and identity, connectedness to a society and to other people, the existential dimension was primarily reported integrated in connection with life-threatening diseases and death. Furthermore, integration of the existential dimension was characterized as unsystematic and intuitive. Communication about religious or spiritual questions was mostly avoided by GPs due to shyness and perceived lack of expertise. GPs also reported infrequent referrals of patients to chaplains. Conclusion: GPs integrate issues related to the existential dimension in implicit and non-standardized ways and are hindered by cultural barriers. As a way to enhance a practice culture in which GPs pay more explicit attention to the patients’ multidimensional concerns, opportunities for professional development could be offered (courses or seminars) that focus on mutual sharing of existential reflections, ideas and communication competencies. Key points Although integration of the existential dimension is recommended for patient care in general practice, little is known about GPs’ understanding and integration of this dimension in the GP–patient encounter. The existential dimension is understood to involve broad and universal life conditions having no explicit reference to spiritual or religious aspects. The integration of the existential dimension is delimited to patient cases where life-threatening diseases, life crises and unexplainable patient symptoms occur. Integration of the existential dimension happens in unsystematic and intuitive ways. Cultural barriers such as shyness and lack of existential self-awareness seem to hinder GPs in communicating about issues related to the existential dimension. Educational initiatives might be needed in order to lessen barriers and enhance a more natural integration of communication about existential issues.

Symptoms and health-related quality of life in patients with advanced cancer - A population-based study in Greenland

PURPOSE The aims were to describe symptoms and health-related quality of life (HRQoL) in Greenlandic patients with advanced cancer and to assess the applicability and internal consistency of the Greenlandic version of the EORTC-QLQ-C30 core version 3.0. METHODS A Greenlandic version of the EORTC QLQ-C30 v.3.0 was developed. The translation process included independent forward translation, reconciliation and independent back translation by native Greenlandic-speaking translators who were fluent in English. After pilot testing, a population-based cross-sectional study of patients with advanced cancer receiving palliative treatment was conducted. Internal consistency was examined by calculating Cronbachs alpha coefficients for five function scales and three symptom scales. RESULTS Of the 58 patients who participated in the study, 47% had reduced social functioning, 36% had reduced physical and role functioning and 19% had reduced emotional and cognitive functioning. Furthermore, 48% reported fatigue, and 33% reported financial problems. The Greenlandic version of the EORTC had good applicability in the assessment of symptoms and quality of life. Acceptable Cronbachs alpha coefficients (above 0.70) were observed for the physical, role and social functioning scales, the fatigue scale and the global health status scale. CONCLUSIONS Patients with undergoing palliative treatment in Greenland for advanced cancer reported high levels of social and financial problems and reduced physical functioning. This indicates a potential for improving palliative care service and increasing the focus on symptom management. The Greenlandic version of the EORTC-QLQ-C30 represents an applicable and reliable tool to describe symptoms and health-related quality of life among Greenlandic patients with advanced cancer.

Barriers to palliative care in people with chronic obstructive pulmonary disease in home care: A qualitative study of the perspective of professional caregivers

AIMS AND OBJECTIVES To examine the experiences with palliative care in people with chronic obstructive pulmonary disease among professional caregivers in a Danish home care setting. BACKGROUND Many patients with advanced chronic obstructive pulmonary disease depend on professional caregivers in the primary sector to provide assistance and care. However, chronic obstructive pulmonary disease patients receive no or only very little palliative care compared to patients with cancer although they may have many burdensome symptoms. DESIGN Qualitative explorative study. METHODS In 2013-2014, ten professional caregivers from three districts in a Danish municipality were followed during home visits to patients with chronic obstructive pulmonary disease and individual interviews about palliative care were subsequently conducted. In 2014, 66 professional caregivers, representing eleven home care districts, participated in ten group discussions about palliative care needs in this group of patients. Data were analysed using qualitative descriptive analysis. RESULTS The study revealed a nonawareness of palliative care for patients with chronic obstructive pulmonary disease among the professional caregivers who expressed vague understanding of palliative care and lack of knowledge about the disease. Organisational barriers, such as lack of time and continuity in patient care, lack of opportunity to discuss palliative care and lack of peer learning were experienced as challenging in the provision of palliative care. Nonawareness and organisational barriers led to difficulties in identifying palliative care needs and reluctance to initiate conversations about palliative care. CONCLUSION The findings indicate a need for education, training and reflection among professional caregivers in home care. Also, organisational changes may be needed to reduce the barriers to palliative care. RELEVANCE TO CLINICAL PRACTICE The findings uncovered barriers to palliative care that must be addressed. Targeted educational programmes and organisational changes may increase the ability to identify palliative care needs and initiate and evaluate palliative interventions.

Development of the EMAP tool facilitating existential communication between general practitioners and cancer patients

Abstract Background: General practice recognizes the existential dimension as an integral part of multidimensional patient care alongside the physical, psychological and social dimensions. However, general practitioners (GPs) report substantial barriers related to communication with patients about existential concerns. Objectives: To describe the development of the EMAP tool facilitating communication about existential problems and resources between GPs and patients with cancer. Methods: A mixed-methods design was chosen comprising a literature search, focus group interviews with GPs and patients (n = 55) and a two-round Delphi procedure initiated by an expert meeting with 14 experts from Denmark and Norway. Results: The development procedure resulted in a semi-structured tool containing suggestions for 10 main questions and 13 sub-questions grouped into four themes covering the existential dimension. The tool utilized the acronym and mnemonic EMAP (existential communication in general practice) indicating the intention of the tool: to provide a map of possible existential problems and resources that the GP and the patient can discuss to find points of reorientation in the patient’s situation. Conclusion: This study resulted in a question tool that can serve as inspiration and help GPs when communicating with cancer patients about existential problems and resources. This tool may qualify GPs’ assessment of existential distress, increase the patient’s existential well-being and help deepen the GP–patient relationship.

Mapping and comparison of palliative care nationally and across nations: Denmark as a case in point

Abstract The formulated goal of mapping palliative care is the development and dissemination of palliative care nationally and internationally. A process of identification and ranking of the development of palliative care and end-of-life care both in Europe and globally has gained momentum over the last 10 years. Overall, Denmark (DK) has obtained relatively low scores in comparative studies. The development of palliative care as a special area of expertise in DK began in the early 1990s. National-level coordination and documentation have only recently been initiated. Taking DK as a case study, this article examines national data and the 2010 Economist Intelligence Unit (EIU) survey, the latter of which in particular aroused political interest in DK. The authors conclude that the national surveys as well as the EIU survey have limited validity in assessing the quality of palliative care and end-of-life care in DK. The same may be assumed to apply to other countries. Increased focus on qualitative methods and local contexts is needed.

Relatives’ level of satisfaction with advanced cancer care in Greenland – a mixed methods study

ABSTRACT Palliative cancer care in Greenland is provided by health professionals at local level, the national Queen Ingrid’s Hospital and at Rigshospitalet in Denmark. To improve and develop care for relatives of patients with advanced cancer, we conducted a mixed method study examining relatives’ level of satisfaction with care and treatment and their current main concerns. The aim was to investigate relatives’ level of satisfaction with advanced cancer care and bring to light their current main concerns. The FAMCARE-20 questionnaire was translated to Greenlandic and pilot tested. The questionnaire was supplemented by open-ended questions about relative’s current main concerns and analyzed with a phenomenological hermeneutical approach. Greenlandic patients with advanced cancer who were previously participating in a prospective study were asked if their closest adult relative would participate in the study. Telephone interviews were conducted and relatives responded to the questionnaire. A total of thirty-two relatives were contacted by telephone and 30 (94%) completed the FAMCARE-20 questionnaire and answered open-ended questions. The highest rate of satisfaction was with the availability of a hospital bed (66%) and relatives were the most dissatisfied with the lack of inclusion in decision making related to treatment and care (71%) and the length of time required to diagnose cancer (70%). Responses to the open-ended questions revealed that relatives faced challenges in gaining access to information from health professionals. They experienced a lack of security, worries about the future and a lack of support at home. The study showed a substantial level of dissatisfaction among relatives of patients with advanced cancer. We strongly recommend a focus on psychosocial care, more access to information and to include relatives in decision making and in the future planning of palliative care services. An assessment of relatives’ needs is essential to develop an adequate palliative care in a range of settings.