Palliative Home Care Teams Research Articles

Place of death for patients treated at a tertiary cancer center in Jordan.

Home death is considered to be a marker of good death. Little is known about the place of death and its determinants in patients with cancer in Jordan. A retrospective analysis of regularly collected data of cancer patients who had a palliative care consultation at King Hussein Cancer Center and died between 2011 and 2012. Variables analyzed were related to the patient, disease, and palliative care services. Patient-related factors included age at death, gender, place of residence, and code status; disease-related variables were cancer type (solid vs hematological), major primary site, and time from cancer diagnosis to death; palliative care service-related variables included time of consultation for palliative care services to death, location of first palliative encounter (outpatient clinic vs hospital floor), multidisciplinary palliative home care teams involvement, and the number of home care visits before death. We examined the association between each variable and place of death using Pearson's chi-square and the Mann-Whitney tests. Factors with statistical significance of P value < 0.1 were entered into multivariate logistic regression model. Among 630 patients, 80 (12.7%) died at home. Univariate analysis showed the following to be significantly associated with dying at home: male gender, age more than 65years old, earlier palliative care involvement, and involvement of home care services (P value < 0.05). Independent predictors for dying at home were male gender, age more than 65years old, and involvement of home care services. Hospital death is more prevalent than home death in cancer patients in Jordan. Involvement of home care services can help achieve the goal of dying at home.

Geographical Differences in Likelihood of Home Death Among Palliative Cancer Patients: A National Population-based Register Study.

Previous studies have shown discrepancies between patient's desired and actual death place. As planning of family support and involvement of palliative home care teams seem to improve the chance to meet patients preferences, geographical availability of specialized palliative home care could influence place of death. Data of patients diagnosed and deceased between January 2011 until December 2014 with lung, brain, colorectal, breast and prostate cancer was collected from Swedish national registers and multiple regression analyses were performed. Patients with lung, brain, colorectal, and prostate cancer who resided in rural municipalities had a higher likelihood of dying at home than dying in hospital settings, compared to those who lived in urban areas. Patients in Sweden, with the exception of breast cancer patients, have a higher likelihood of home death than inpatient hospital death when residing in rural areas compared to when residing in urban areas.

Understanding the role of regulatory flexibility and context sensitivity in preventing burnout in a palliative home care team.

Although burnout syndrome has been investigated in depth, studies specifically focused on palliative home care are still limited. Moreover, there is still a lack of evidence regarding the interplay between emotional flexibility and sensitivity to context in preventing burnout in home care settings. For these reasons, the aims of this study were to examine burnout symptoms among practitioners specializing in palliative home care and to investigate the role of regulatory flexibility and sensitivity to context in understanding burnout. An exploratory cross-sectional design was adopted. A convenience sample (n = 65) of Italian specialist palliative care practitioners participated in this study. Participants were recruited between February and April 2019 from two palliative home care services that predominantly cared for end-of-life cancer patients. The Italian version of the Maslach Burnout Inventory (MBI), the Flexible Regulation of Emotional Expression (FREE) scale (a measure of emotional flexibility), and the Context Sensitivity Index (CSI) (a measure of sensitivity to context) were administered. Analyses of variance were conducted using the three MBI factors as dependent variables and profession as an independent variable. Subsequently, three identical analyses of covariance were conducted with age, work experience, flexibility and sensitivity to context as covariates. The results showed a low burnout risk for all three of the MBI factors, and there were no gender differences. An ANOVA revealed a significant effect of profession type and age on the emotional exhaustion factor of the MBI, and an ANCOVA indicated that these effects persisted after covariates were accounted for. The results also showed a significant effect of the FREE score on emotional exhaustion. These findings can help explain the differential contributions of profession type and age to the burnout symptoms investigated. In addition, the emotional flexibility component, as an aspect of resilience, represents a significant and specific factor of emotional exhaustion. Interventions to prevent burnout must consider these relationships.

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.

Interprofessional collaboration within fluid teams: Community nurses' experiences with palliative home care.

To explore how community nurses experience the collaboration with general practitioners and specialist palliative home care team nurses in palliative home care and the perceived factors influencing this collaboration. The complexity of, and the demand for, palliative home care is increasing. Primary palliative care is provided by community nurses and general practitioners, often in collaboration with palliative home care team nurses. Although these professionals may each individually be part of a fixed team, a new temporary team is often composed for every new palliative patient. These membership changes, referred to as team membership fluidity, challenge professionals to work effectively. A qualitative research design, using semi-structured interviews with community nurses. Participant selection happened through regional palliative care networks in Belgium. The network's palliative home care team nurses selected community nurses with whom they recently collaborated. Twenty interviews were conducted. A constant comparative analysis approach was used. Consolidated criteria for reporting qualitative research guidelines were followed. Formal interprofessional team meetings were not common practice. The other's approachability and knowing each other positively influenced the collaboration. Time constraints, the general practitioners' lack of expertise, communication style, hierarchy perception and income dependency negatively influenced the collaboration with general practitioners and determined palliative home care team nurses' involvement. The coping strategies of community nurses balanced between a behaviour focused to the patient and to the professional relationship. Specialist palliative home care team nurses were relied upon for their expertise but also to mediate when community nurses disagreed with general practitioners. Community nurses showed to be highly adaptable within the fluid team. Strikingly, dynamics described in the doctor-nurse game 50years ago are still present today and affect the interprofessional communication. Interprofessional education interventions can contribute to improved interprofessional collaboration. The study findings uncovered critical knowledge gaps in interprofessional collaboration in palliative home care. Insights are relevant for and related to professional well-being and workplace learning.

Advanced dementia: an integrated homecare programme

ObjectivesWe established an integrated palliative homecare programme for advanced dementia. This study explores patients’ symptoms and quality-of-life and their association with enteral feeding, evaluates the impact of the programme on...

District nurses' experiences of providing palliative care in the home: An interview study

The trend shows that more people are choosing to die at home. Since at home palliative care is often provided by district nurses, their work will be affected, and the burden will increase. The aim of this study was to illuminate district nurses' experiences of providing palliative care in the home. Qualitative semi-structured interviews were conducted with 12 district nurses. The interviews were analyzed according to the qualitative content analysis methods that Graneheim and Lundman describe. Findings consist of three main categories with nine subcategories. The conclusion is that collaboration with others is essential. Providing palliative care in the home is both emotionally rewarding and demanding, and the work is additionally time and expertise consuming. District nurses want more resources and organizational changes, such as access to doctors and a palliative home care team who only work with these patients. This would be an advantage both for district nurses and the patients.

Phase 0–1 early palliative home care cancer treatment intervention study

ObjectivesRecent studies have shown that the early provision of palliative care (PC) integrated into oncology in the hospital has beneficial effects on the quality of life of people who are...

Who finds the road to palliative home care support? A nationwide analysis on the use of supportive measures for palliative home care using linked administrative databases.

BackgroundMany countries developed supportive measures for palliative home care, such as financial incentives or multidisciplinary palliative home care teams. For policy makers, it is important to evaluate the use of these national palliative home care supportive measures on a population level.Methods and findingsUsing routinely-collected data on all deaths in Belgium in 2012 (n = 107,847) we measured the use of four statutory supportive measures, specifically intended for patients who have obtained the legal palliative status, and three non-statutory supportive measures. Factors associated with uptake were analysed using multivariable logistic regression. Of all deaths of adult home-dwelling persons in Belgium (n = 87,007), 17.9 percent used at least one statutory supportive measure and 51.5 percent used at least one non-statutory supportive measure. In those who died of an illness indicative of palliative care needs 33.1 percent used at least one statutory supportive measure and 62.2 percent used at least one non-statutory supportive measure. Younger people and persons dying from cancer were more likely to use a statutory policy measure. Older people and persons dying from COPD were most likely to use a non-statutory policy measure. Women, non-single people, and those living in less urbanised areas were most likely to use any supportive measure.ConclusionsStatutory supportive measures for palliative home care are underused, even in a subpopulation of persons with potential palliative care needs. Policy makers should stimulate an equitable uptake, and reducing the observed inequalities is an important focus for health care policy.

Breaking Barriers: Prospective Study of a Cohort of Advanced Chronic Obstructive Pulmonary Disease Patients To Describe Their Survival and End-of-Life Palliative Care Requirements.

Background and Aim: Consensus has been reached on the need to integrate palliative care in the follow-up examinations of chronic obstructive pulmonary disease (COPD) patients. We analyzed the survival from the initiation of follow-up by a palliative home care team (PHCT) and described the needs and end-of-life process.Setting and Design: This study was a prospective observational cohort study of advanced COPD patients referred to a PHCT. Sociodemographic variables, survival from the start date of follow-up using the Kaplan–Meier model, health resource consumption, perceived quality of life, main symptomatology, opioid use, and advanced care planning (ACP) were analyzed.Results: Sixty patients were included. The median survival was 8.3 months. Forty-two patients died at the end of the study (85% at home or in palliative care units). The most frequent cause of death was respiratory failure in 39 patients (93%), with 29 of these patients requiring sedation (69%). Dyspnea at rest, with an average of 5 (standard deviation [SD] 2) points, was the main symptom. Fifty-five patients (91%) required opioids for symptom control. The median score in the St. George's Respiratory Questionnaire was 72 (SD 13). The mean number of visits by the home team was 7 (SD 6.5). The mean number of admissions during the monitoring period was 1.5 (SD 0.15).Conclusions: The characteristics of the cohort appear suitable for a PHCT. The follow-up care provided by our multidisciplinary unit decreased the number of hospitalizations, favored the development of ACP, and enabled death at home or in palliative care units.

Barriers to the early integration of palliative home care into the disease trajectory of advanced cancer patients: A focus group study with palliative home care teams.

Palliative care is still often involved late in the disease trajectory. Recently, some studies have explored the barriers to early integration of PC in the hospital setting. Because palliative care home care (PHC) is organised differently compared with PC in a hospital setting, the identification of barriers to the early integration of PHC is needed. Six focus groups were held with PHC teams in Flanders, Belgium. Discussions were transcribed verbatim and analysed using constant comparative analysis. Our findings confirm many barriers found in previous studies, such as the lack of financial resources and the perception of PC as terminal care. Oncologists' lack of knowledge about the content and role of PC is also confirmed. Furthermore, professional caregivers working in the home context are lacking information on oncology therapies necessary to provide optimal PC. A barrier for the home context is the discontinuity of care, as a result of a lack of communicational structure and a lack of central coordination. The results contribute to a better understanding of the factors hindering the provision of PHC alongside oncology care. For the home context, transmural discontinuity of care seems to be an important additional barrier.

Burnout in Home Palliative Care: What Is the Role of Coping Strategies?

The study examines psychophysical distress of health-care professionals providing home-based palliative care. The aim is to investigate potential correlations between dimensions of burnout and different coping strategies. The present study is an observational cross-sectional investigation. The study involved all the home palliative care teams of an Italian nonprofit organization. Of a total of 275 practitioners working for the organization, 207 (75%) decided to participate in the study and complete questionnaires. Questionnaires employed were Maslach Burnout Inventory, General Health Questionnaire 12, Psychophysiological Questionnaire of CBA 2.0, and Coping Orientation to Problems Experienced. Professionals were physicians (50%), nurses (36%), and psychologists (14%). There were no exclusion criteria. Data were processed by SPSS 23 and analyses employed were Spearman ρ, Mann-Whitney U test, and 1-way analysis of variance on ranks. Among participants, a low number of professionals were emotionally exhausted (11%) or not fulfilled at work (20%), whereas most of them complained of depersonalization symptoms (67%). Emotional exhaustion and depersonalization were found to be associated with avoidance coping strategies, whereas problem-solving and positive attitude were negatively associated with emotional exhaustion and positively with personal accomplishment. Moreover, using avoidance strategies was related to a worse psychological and physical condition. Findings suggest the need to provide professionals training programs about coping and communication skills tailored to fit the professionals' needs according to their work experience in palliative care and aimed at improving the approach to patients and relatives.

Impact of palliative home care support on the quality and costs of care at the end of life: a population-level matched cohort study

ObjectivesTo evaluate the impact of palliative home care support on the quality of care and costs in the last 14 days of life.DesignMatched cohort study using linked administrative databases.SettingAll people...

Caregiver training for a therapeutic alliance in palliative home care.

15 Background: Caregiver (CG) presence and efficiency are crucial in providing a palliative home care (PC) program. The Aims of this study were: 1. to investigate educational needs expressed by caregivers (CGs) of advanced cancer patients (pts) in home care service (HCS) of our Institution; 2. to develop a guide to support PC team; 3. to evaluate the impact of this tool on CGs skills. Methods: Based on published data, we identified 3 areas of interest (therapy administration (TA), care, symptoms management) and 17 specific topics: mobilization, hygiene, skin/mouth care, dysphagia, xerostomia, bowel function, diuresis/urinary catheter care, feeding, and some symptoms. We then prepared a guide with clear information regarding each topic. We mainly focused on symptoms, in particular on pain. We elaborated instructions on TA and administration routes (techniques for subcutaneous (SC) injection/infusion with elastomeric pump). Use of short tips, images, pictures, and cartoons made the guide very accessible. From July to September 2017 the guide was provided to 24 CGs, 8 (33%) men, 16 (66%) women. 12 CGs (50%) were pts’ partners, 10 (41.6%) son/daughter, 1 relative (4.1%), 1 formal CG (4.1%). Several educational interventions (EI) were adopted to reinforce learning according to the pt conditions and CGs’ needs. The effectiveness of EI was retrospectively assessed from clinical records. Results: We offered 218 EI to 24 CGs, with an average of 9 per CG, and within a range of 6-13 per CG. Topics most frequently addressed were: SC injection technique (100%), skin care (21 CGs, 87.5%), pain care (21 CGs, 87.5%), feeding (20 CGs, 83.3%), mobilization techniques (17 CGs, 70.8%). We also performed 16 EI repetitions on 11 CGs (45.8%) on ≥1 topics: 4 for mobilization, 2 for pain, dysphagia, SC injection, feeding, bowel function, 2 for other topics.Assessment of EI effectiveness showed great CG receptivity, with 93% of interventions followed by a change in CG behaviour thereafter. Conclusions: The proposed intervention, the use of a simple guide to reinforce EI, is feasible, well accepted and appears to improve CG’s ability in providing home PC. Based on these results, we added a section dedicated to EI for CGs into the new electronic record of our HCS, introduced since January 2018.

Barriers for the Early Integration of Palliative Home Care Into the Disease Trajectory of Advanced Cancer Patients: A Focus Group Study with Palliative Home Care Teams

Barriers for the Early Integration of Palliative Home Care Into the Disease Trajectory of Advanced Cancer Patients: A Focus Group Study with Palliative Home Care Teams

Team type, team maturity and team effectiveness in specialist palliative home care: an exploratory questionnaire study

ABSTRACT To meet complex needs in persons and families within specialist palliative care, care team members are expected to work together in performing a comprehensive assessment of patient needs. Team type (how integrated team members work) and team maturity (group development) have been identified as components in team effectiveness and productivity. The aim of the study reported in this paper was to identify team types in specialist palliative care in Sweden, and to explore associations between team type, team maturity and team effectiveness in home care teams. A national web-based survey of team types, based on Thylefors questionnaire, and a survey of healthcare professionals using the Group Development Questionnaire (GDQ-SE3) to assess team developmental phase, effectiveness and productivity were used in an exploratory cross-sectional design. The participants were: Specialist palliative care teams in Sweden registered in the Palliative Care Directory (n = 77), and members of 11 specialist palliative home care teams. Teams comprised physicians, registered nurses, social workers, physiotherapists and/or occupational therapists, full-or part-time. Our national web survey results showed that the 77 investigated teams had existed from 7 to 21 years, were foremost of medium size and functioned as inter- or transprofessional teams. Results from the 61 HCPs, representing 11 teams, indicated that more mature teams tended to work in an integrated manner, rather than in parallel. The effectiveness ratio varied from 52% to 86% in teams. Recommendations arising from our findings include the need for clarification of team goals and professional roles together with prioritizing the development of desirable psychosocial traits and team processes in clinical settings.

Information provision as evaluated by people with cancer and bereaved relatives: A cross-sectional survey of 34 specialist palliative care teams

ObjectiveTo explore how individuals with cancer and bereaved relatives evaluate information provision by specialist palliative care services (PCSs). MethodsA cross-sectional survey was conducted within four multidisciplinary palliative homecare teams (HCTs), 17 hospital-based palliative care units (PCUs) and 13 hospital-based mobile palliative support teams (PSTs) in Belgium. During four measurement periods, structured questionnaires were administered to people being guided by PCSs and relatives of patients who had died while under the care of PCSs. ResultsIn total, 628 patients (80%) and 980 relatives (55%) responded; 73–82% and 75–77% respectively reported having received the right amount of information. Compared with those receiving care within a PCU, those being supported by a PST were more likely to report suboptimal information provision and decision-making. Relatives of those who had died while under the guidance of a PST were also more likely to report suboptimal information provision than their PCU counterparts. ConclusionAlthough information provision to cancer patients and relatives being supported by PCSs is generally evaluated positively, evaluations depend on the type of service. Practice implicationsInformation provided within PCUs offering highly personalised, continuous care appears to both groups more satisfactory than that provided by palliative care teams mainly supporting care staff.

Experiences of Dutch general practitioners and district nurses with involving care services and facilities in palliative care: a mixed methods study

BackgroundGenerals practitioners (GPs) and district nurses (DNs) play a leading role in providing palliative care at home. Many services and facilities are available to support them in providing this complex care. This study aimed to examine the extent to which GPs and DNs involve these services, what their experiences are, and how involvement of these services and facilities can be improved.MethodsSequential mixed methods consisting of an online questionnaire with structured and open questions completed by 108 GPs and 258 DNs, followed by three homogenous online focus groups with 8 GPs and 19 DNs, analyzed through open coding.ResultsMost GPs reported that they sometimes or often involved palliative home care teams (99%), hospices (94%), and palliative care consultation services (93%). Most DNs reported sometimes or often involving volunteers (90%), hospices (88%), and spiritual caregivers (80%). The least involved services and facilities were psychologists and psychiatrists (51% and 50%) and social welfare (44% and 57%). Main reason for not involving services and facilities was ‘not needing’ them. If they had used them, most GPs and DNs (68–93%) reported solely positive experiences. Hardly anyone (0–3%) reported solely negative experiences with any of the services and the facilities. GPs and DNs suggested improvements in three areas: (1) establishment of local centers giving information on available services and facilities, (2) presentation of services and facilities in local multidisciplinary meetings, and (3) support organizations to proactively offer their facilities and services.ConclusionPsychological, social, and spiritual services are involved less often, suggesting that the classic care model, which focuses strongly on somatic issues, is still well entrenched. More familiarity with services that can provide additional care in these areas, regarding their availability and their added value, could improve the quality of life for patients and relatives at the end of life.

Volunteer involvement in the organisation of palliative care: A survey study of the healthcare system in Flanders and Dutch-speaking Brussels, Belgium.

Ageing populations increasingly face chronic and terminal illnesses, emphasising the importance of palliative care and quality of life for terminally ill people. Facing resource constraints in professional healthcare, some governments expect informal caregivers like volunteers to assume a greater share of care provision. We know volunteers are present in palliative care and perform many roles, ranging from administration to providing companionship. However, we do not know how involved they are in the organisation of care and how healthcare organisations appraise their involvement. To address this, we provide an extensive description of the involvement of volunteers who provide direct patient palliative care across the Flemish healthcare system in Belgium. We conducted a cross-sectional postal survey of 342 healthcare organisations in Flanders and Brussels in 2016, including full-population samples of palliative care units, palliative day care centres, palliative home-care teams, medical oncology departments, sitting services, community home-care services, and a random sample of nursing homes. Volunteer involvement was measured using Sallnow and Paul's power-sharing model, which describes five hierarchical levels of engagement, ranging from being informed about the organisation of care to autonomy over certain aspects of care provision. Response was obtained for 254 (79%) organisations. Volunteers were often informed about and consulted regarding the organisation of care, but healthcare organisations did not wish for more autonomous forms of volunteer involvement. Three clusters of volunteer involvement were found: "strong involvement" (31.5%), "restricted involvement" (44%), and "uninvolved" (24.5%). Degree of involvement was found to be positively associated with volunteer training (p<0.001) and performance of practical (p<0.001) and psychosocial care tasks (p<0.001). Dedicated palliative care services displayed a strong degree of volunteer involvement, contrary to generalist palliative care services, suggesting volunteers have a more important position in dedicated palliative care services. A link is found between volunteer involvement, training, and task performance.

Actions helping expressed or anticipated needs: Patients with advanced cancer and their family caregivers' experiences of specialist palliative home care teams.

Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients' and family caregivers' experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety-five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregivers experienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.