Palliative Trajectory Research Articles

“You can’t die here”: an exploration of the barriers to dying-in-place for structurally vulnerable populations in an urban centre in British Columbia, Canada

BackgroundOne measure of quality in palliative care involves ensuring people approaching the end of life are able to receive care, and ultimately die, in the places they choose. Canadian palliative care policy directives stem from this tenet of autonomy, acknowledging that most people prefer to die at home, where they feel safe and comfortable. Limited research, however, considers the lack of ‘choice’ people positioned as structurally vulnerable (e.g., experiencing extreme poverty, homelessness, substance-use/criminalization, etc.) have in regard to places of care and death, with the option of dying-in-place most often denied.MethodsDrawing from ethnographic and participatory action research data collected during two studies that took place from 2014 to 2019 in an urban centre in British Columbia, Canada, this analysis explores barriers preventing people who experience social and structural inequity the option to die-in-place. Participants include: (1) people positioned as structurally vulnerable on a palliative trajectory; (2) their informal support persons/family caregivers (e.g., street family); (3) community service providers (e.g., housing workers, medical professionals); and (4) key informants (e.g., managers, medical directors, executive directors). Data includes observational fieldnotes, focus group and interviews transcripts. Interpretive thematic analytic techniques were employed.ResultsParticipants on a palliative trajectory lacked access to stable, affordable, or permanent housing, yet expressed their desire to stay ‘in-place’ at the end of life. Analysis reveals three main barriers impeding their ‘choice’ to remain in-place at the end of life: (1) Misaligned perceptions of risk and safety; (2) Challenges managing pain in the context of substance use, stigma, and discrimination; and (3) Gaps between protocols, policies, and procedures for health teams.ConclusionsFindings demonstrate how the rhetoric of ‘choice’ in regard to preferred place of death is ethically problematic because experienced inequities are produced and constrained by socio-structural forces that reach beyond individuals’ control. Ultimately, our findings contribute suggestions for policy, programs and practice to enhance inclusiveness in palliative care. Re-defining ‘home’ within palliative care, enhancing supports, education, and training for community care workers, integrating palliative approaches to care into the everyday work of non-health care providers, and acknowledging, valuing, and building upon existing relations of care can help to overcome existing barriers to delivering palliative care in various settings and increase the opportunity for all to spend their end of life in the places that they prefer.

A novel care guide for personalised palliative care – a national initiative for improved quality of care

BackgroundEven when palliative care is an integrated part of the healthcare system, the quality is still substandard for many patients and often initiated too late. There is a lack of structured guidelines for identifying and caring for patients; in particular for those with early palliative care needs. A care guide can act as a compass for best practice and support the care of patients throughout their palliative trajectory. Such a guide should both meet the needs of health care professionals and patients and families, facilitating discussion around end-of-life decision-making and enabling them to plan for the remaining time in life. The aim of this article is to describe the development and pilot testing of a novel Swedish palliative care guide.MethodsThe Swedish Palliative Care Guide (S-PCG) was developed according to the Medical Research Council framework and based on national and international guidelines for good palliative care. An interdisciplinary national advisory committee of over 90 health care professionals together with patient, family and public representatives were engaged in the process. The feasibility was tested in three pilot studies in different care settings.ResultsAfter extensive multi-unit and interprofessional testing and evaluation, the S-PCG contains three parts that can be used independently to identify, assess, address, follow up, and document the individual symptoms and care-needs throughout the whole palliative care trajectory. The S-PCG can provide a comprehensive overview and shared understanding of the patients’ needs and possibilities for ensuring optimal quality of life, the family included.ConclusionsBased on broad professional cooperation, patients and family participation and clinical testing, the S-PCG provides unique interprofessional guidance for assessment and holistic care of patients with palliative care needs, promotes support to the family, and when properly used supports high-quality personalised palliative care throughout the palliative trajectory. Future steps for the S-PCG, entails scientific evaluation of the clinical impact and effect of S-PCG in different care settings – including implementation, patient and family outcomes, and experiences of patient, family and personnel.

Transitions in Labour Force Participation over the Palliative Care Trajectory.

Home-based palliative programs rely on family caregivers, who often miss time from employment. This article identified changes in caregivers' labour force participation over the palliative trajectory. Family caregivers (n = 262) were interviewed biweekly to measure transitions across four employment categories. More than half of the caregivers had one employment transition and 29% had three or more.The highest proportion of transitions occurred for caregivers who were employed part-time. Understanding these transitions is critical to the development of strategies tailored to caregivers to contain labour force losses and to support caregivers during a time of high caregiving demands.

Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): a study protocol

BackgroundPalliative care is becoming increasingly important because the number of patients with an incurable disease is growing and their survival is improving. Previous research tells us that early palliative care has the potential to improve quality of life (QoL) in patients with advanced cancer and their relatives. According to limited research on palliative care in the Netherlands, patients with advanced cancer and their relatives find current palliative care suboptimal. The aim of the eQuiPe study is to understand the experienced quality of care (QoC) and QoL of patients with advanced cancer and their relatives to further improve palliative care.MethodsA prospective longitudinal observational cohort study is conducted among patients with advanced cancer and their relatives. Patients and relatives receive a questionnaire every 3 months regarding experienced QoC and QoL during the palliative trajectory. Bereaved relatives receive a final questionnaire 3 to 6 months after the patients’ death. Data from questionnaires are linked with detailed clinical data from the Netherlands Cancer Registry (NCR). By means of descriptive statistics we will examine the experienced QoC and QoL in our study population. Differences between subgroups and changes over time will be assessed while adjusting for confounding factors.DiscussionThis study will be the first to prospectively and longitudinally explore experienced QoC and QoL in patients with advanced cancer and their relatives simultaneously. This study will provide us with population-based information in patients with advanced cancer and their relatives including changes over time. Results from the study will inform us on how to further improve palliative care.Trial registrationTrial NL6408 (NTR6584). Registered in Netherlands Trial Register on June 30, 2017.

Development, modelling, and pilot testing of a complex intervention to support end-of-life care provided by Danish general practitioners

BackgroundMost patients in end-of-life with life-threatening diseases prefer to be cared for and die at home. Nevertheless, the majority die in hospitals. GPs have a pivotal role in providing end-of-life care at patients’ home, and their involvement in the palliative trajectory enhances the patient’s possibility to stay at home. The aim of this study was to develop and pilot-test an intervention consisting of continuing medical education (CME) and electronic decision support (EDS) to support end-of-life care in general practice.MethodsWe developed an intervention in line with the first phases of the guidelines for complex interventions drawn up by the Medical Research Council. Phase 1 involved the development of the intervention including identification of key barriers to provision of end-of-life care for GPs and of facilitators of change. Furthermore the actual modelling of two components: CME meeting and EDS. Phase 2 focused on pilot-testing and intervention assessment by process evaluation.ResultsIn phase 1 lack of identification of patients at the end of life and limited palliative knowledge among GPs were identified as barriers. The CME meeting and the EDS were developed. The CME meeting was a four-hour educational meeting performed by GPs and specialists in palliative care. The EDS consisted of two parts: a pop-up window for each patient with palliative needs and a list of all patients with palliative needs in the practice. The pilot testing in phase 2 showed that the CME meeting was performed as intended and 120 (14%) of the GPs in the region attended. The EDS was integrated in existing electronic records but was shut down early for external reasons; 50 (5%) GPs signed up. The pilot-testing demonstrated a need to strengthen the implementation as attending rate was low in the current set-up.ConclusionWe developed a complex intervention to support GPs in providing end-of-life care. The pilot-test showed general acceptance of the CME meetings. The EDS was shut down early and needs further evaluation before examining the whole intervention in a larger study, where evaluation could be based on patient-related outcomes and impact on end-of-life care.Trial registrationClinicaltrials.gov (NCT02050256) January 30, 2014.

Improving Spiritual Care in Hospitals in the Netherlands: What Do Health Care Chaplains Involved in an Action-Research Study Report?

Health care chaplains participated in a multicenter trial to explore an implementation strategy for the Dutch multidisciplinary guideline for spiritual care. The intervention was concise spiritual care training for hospital staff of departments where patients in curative and palliative trajectories are treated. Data were collected in semistructured interviews with chaplains who acted as trainers, before and after the intervention. Results based on nine preintervention and eleven post-intervention interviews are presented. During preintervention interviews, chaplains describe the baseline situation of palliative care in Dutch hospitals, barriers, and opportunities for improving spiritual care. In the postintervention interviews, characteristics of the training, effects, and critical success factors were identified. Positive effects such as lowering barriers, increasing health care professionals’ competences, and increasing health care chaplains’ profile are possible. Chaplain-led, multidisciplinary spiritual care training is a feasible method to start implementation of spiritual care in hospitals, as described in the multidisciplinary guideline.

A systematic review of prognostic factors at the end of life for people with a hematological malignancy

BackgroundAccurate prognosticating is needed when patients are nearing the end of life to ensure appropriate treatment decisions, and facilitate palliative care provision and transitioning to terminal care. People with a hematological malignancy characteristically experience a fluctuating illness trajectory leading to difficulties with prognosticating. The aim of this review was to identify current knowledge regarding ‘bedside’ prognostic factors in the final 3 months of life for people with a hematological malignancy associated with increased risk of mortality.MethodsA systematic review of the literature was performed across: PubMed; CINAHL; PsycINFO; and Cochrane with set inclusion criteria: 1) prognostic cohort studies; 2) published 2004–2014; 3) sample ≥ 18 years; 4) >50% sample had a hematological malignancy; 5) reported ‘bedside’ prognostic factors; 6) median survival of <3 months; and 7) English language. Quality appraisal was performed using the Quality In Prognostic Studies (QUIPS) tool. Results are reported in line with PRISMA guidelines.ResultsThe search returned 4860 studies of which 28 met inclusion criteria. Twenty-four studies were rated moderate quality, three were high quality and one study was deemed to be of low quality. Most studies were set in the ICU (n = 24/28) and were retrospective (n = 25/28). Forty ‘bedside’ prognostic factors were identified as associated with increased risk of mortality encompassing the following broad categories: 1) demographics; 2) physiological complications or conditions; 3) disease characteristics; 4) laboratory blood values; and 5) interventions.ConclusionsThe literature on prognosticating in the final months of life was predominantly focused on people who had experienced acute physiological deterioration and were being treated aggressively in the in-patient setting. A significant gap in the literature exists for people who are treated less aggressively or are on a palliative trajectory. Findings did not report on, or confirm the significance of, many of the key prognostic factors associated with increased risk of mortality at the end of life in the solid tumour population, demonstrating key differences in the two populations.Trial registrationThis systematic review was not registered.

Training hospital staff on spiritual care in palliative care influences patient-reported outcomes: Results of a quasi-experimental study

Background: Spiritual care is reported to be important to palliative patients. There is an increasing need for education in spiritual care. Aim: To measure the effects of a specific spiritual care training on patients’ reports of their perceived care and treatment. Design: A pragmatic controlled trial conducted between February 2014 and March 2015. Setting/participants: The intervention was a specific spiritual care training implemented by healthcare chaplains to eight multidisciplinary teams in six hospitals on regular wards in which patients resided in both curative and palliative trajectories. In total, 85 patients were included based on the Dutch translation of the Supportive and Palliative Care Indicators Tool. Data were collected in the intervention and control wards pre- and post-training using questionnaires on physical symptoms, spiritual distress, involvement and attitudes (Spiritual Attitude and Involvement List) and on the perceived focus of healthcare professionals on patients’ spiritual needs. Results: All 85 patients had high scores on spiritual themes and involvement. Patients reported that attention to their spiritual needs was very important. We found a significant (p = 0.008) effect on healthcare professionals’ attention to patients’ spiritual and existential needs and a significant (p = 0.020) effect in favour of patients’ sleep. No effect on the spiritual distress of patients or their proxies was found. Conclusion: The effects of spiritual care training can be measured using patient-reported outcomes and seemed to indicate a positive effect on the quality of care. Future research should focus on optimizing the spiritual care training to identify the most effective elements and developing strategies to ensure long-term positive effects. This study was registered at the Dutch Trial Register: NTR4559.

Factors associated with preference for dying at home among terminally ill patients with cancer.

An important element in end-of-life care advocacy is to meet patients' end-of-life preferences. Most Scandinavian patients die in hospitals even though the majority prefers to die at home. Earlier studies have shown socio-economic differences in relation to dying at home, but more knowledge is needed in relation to preferences for place of death. Hence, on valid Danish register-based socio-economic data, we aimed to investigate whether demographic and socio-economic factors were associated with preference for dying at home. Population-based, historic cohort study among 282 relatives of deceased patients who died of cancer in Denmark in 2006. Bereaved relatives were asked to state patient's preference concerning place of death at the beginning and end of the palliative period. These data were recently combined with updated, extensive demographic and socio-economic data from Danish national health registers. Generalised linear models were used modelling prevalence ratio (PR). We found a significant positive association at the beginning of the palliative trajectory between preferring home death and being male (PR = 1.26 (95% CI: 1.00;1.58) (p = 0.048)) and a significant negative association between having medium income compared with high income (PR = 0.81 (95% CI 0.67;0.98) (p = 0.031)). At the end of the palliative trajectory, a significant negative association was found between preferring home death and living in a community with more than 100 000 inhabitants (PR = 0.63 (95% CI 0.45;0.89) (p = 0.008)) compared with living in communities with less than 10 000 inhabitants. The study showed that socio-economic factors such as gender, level of income and size of community were associated with preference for dying at home. Hence, this study qualifies prior studies on preferences for end-of-life care and advocates for a more nuanced picture of the subject. Advocacy in end-of-life nursing recommends optimising active listening and communication skills striving towards more patients' preferences in all settings may be heard and fulfilled.

Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada.

Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n=327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care-giving demands, thereby potentially allowing for longer patient care in the home setting.

The timing, duration, and management of symptoms of children with an incurable brain tumor: a retrospective study of the palliative phase.

A brain tumor is diagnosed in 25% of pediatric oncology patients and carries a 30% mortality rate. To increase proactive support of children with a progressive brain tumor, we obtained information on timing, duration, and management of symptoms in the palliative trajectory. A retrospective review of medical charts of patients treated at a children's university hospital, who were dying from a brain tumor between May 2007 and September 2012. Thirty-four children were included. After 0-2480 days (median, 168 days) from initial diagnosis, incurable disease was evident, with death occurring after 1-603 days (median, 80 days). Palliative cancer-directed therapy was given to 23 (68%) patients. Early presenting symptoms were altered mobility, speech disorders, and loss of sight or hearing. The symptoms with the shortest duration were somnolence, dysphagia, and dyspnea. The most frequent symptoms were pain (91%), poor mobility (74%), and somnolence (71%). Pain necessitated a short period of intravenous treatment with morphine in 38% of patients, for a median 4 days, and sedation in 15%, for a median 2.5 days. Do-not-resuscitate agreements were discussed with all parents at 0-576 days before death (median, 50 days) and were agreed upon by 33 (97%) parents. Twenty-seven (79%) patients died at home, and one died in a hospice. Six (18%) patients were admitted for intravenous anticonvulsants, pain medication, and sedation until death. This study reports specific information on the timing of occurrence and duration of symptoms. This information will provide support for pediatric oncologists in preparing parents and primary health care professionals and anticipating symptom management and timely end-of-life decision-making in the palliative care phase for children with a brain tumor.

Societal costs of home and hospital end-of-life care for palliative care patients in Ontario, Canada.

In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00 CDN = $1.00 USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of costs borne by different stakeholders.

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

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. 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. 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. 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.

Palliative Medicine Update: A Multidisciplinary Approach

Palliative medicine is a young specialty that is officially recognized in relatively few countries. The World Health Organization published an adapted definition in 2002, describing palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness. When the accent is shifting from curative to palliative, the goal of management is the maintenance or improvement of the patient's quality of life. The different dimensions of palliative care and the multitude of types of care to be provided require a multidisciplinary, well-functioning team, effective communication and a clear task division between primary and hospital care. Considering the complexity of care for incurable patients, a multidisciplinary approach is a prerequisite to balance curative and palliative intervention options. Optimal functioning of a team requires excellent training, communication and a description of the tasks and responsibilities of each team member. More and more advanced care planning is introduced in palliative care, focusing on an early identification of patients in a palliative trajectory and on the prevention of annoying symptoms, hoping that this approach results in an improved quality of life for the individual patient, less useless technical investigations and a better end-of-life care on the place the patient and his family desires.

A welcome dilemma: setting priorities for the 12th EAPC Congress

The 12th Congress of the European Association for Palliative Care (EAPC) is now just a few weeks away, and as a member of the EAPC’s Board and a nurse with an active role in the community, I have been looking through the scientific programme with interest. Many important topics will be presented and discussed— how to choose which sessions to attend? Regretting that I can’t split myself into two or three people, I have to think about what really concerns me the most and set priorities. This year my daily work shall guide me. Working as a consulting nurse in a ‘Mobile Palliative Care Team’ in Switzerland, I am confronted with highly challenging situations every day. This Monday, a patient with advanced pancreatic cancer expressed her wish to die at home. She wondered what the complications might be, how she and her husband should prepare themselves, and what would happen if she fell into a coma. Questions such as these certainly facilitate communication about end-of-life choices and allow people to prepare themselves for what may come. Nevertheless, I found this conversation very challenging, because the couple also signalled that they were not quite ready to hear information about the illness trajectory or the dying process. Unable to elaborate at this meeting, I left without clear ideas about their choices and without informing them about the existing procedures and medications that might alleviate their fears. Looking through the programme of the EAPC congress, I will surely listen to the presentation ‘Voices from the community: people’s perspectives on preferred priorities for care and communication at the end of life’, as well as ‘Recognising dying and the interplay between patients, families and professionals in palliative home care’ to gain more insights and guidance into similar situations. On Tuesday I visited a patient with advanced lung fibrosis. While elaborating his fears of suffocation, dependency, loss of control, and loss of dignity, he informed me that he had called on an organization that provides medication to allow people to commit suicide. In this consultation, I was able to introduce him to alternative ways of dealing with shortness of breath and his fear of suffocation (including the option of palliative sedation if all else fails), but building a helpful strategy to respond to his perceived loss of dignity is much more complex. Several lectures at the Congress deal with the various issues I encountered in dealing with this patient, including ‘Development of a complex intervention: a dignity care pathway for use by community nurses with people receiving end of life care at home’ and the symposium ‘How should palliative care deal with patients requesting PAS or euthanasia’ to name just two. Then on Thursday, all of the regional Mobile Palliative Care Teams met to develop guidelines to perform palliative sedation at home safely. We discussed the competencies that are needed, which people need to be accessible 24/7, and what support informal and formal caregivers need in order to cope with this exceptional procedure. As well as the EAPC White Paper on sedation, several lectures at the Congress will certainly provide helpful knowledge of this delicate therapeutic option. I look forward to hearing ‘How much longer will it take? The role of the family in the palliative sedation trajectory’. Finally, on the Friday I visited a 90-yearold man with advanced dementia at his home. Over the last 2 weeks the patient had developed pressure sores, and he increasingly suffers from dyspnoea, pulmonary secretion, fever, and a cough. Although the primary care team realized that this man’s dying process has started, Esther Schmidlin is a Nurse Consultant, Clinical Nurse, and Nurse Educator in Switzerland, and she also sits on the Board of the European Association for Palliative Care. they responded to the despair and pain of the family. The patient’s inability to swallow prompted them to feed and hydrate him through a nasogastric tube with a total of 2500 ml fluid for over a week. This was a challenging situation: our mobile team appreciated all the care and dedication that the patient had been given, but we also had to discuss the consequences of the over-hydration. Surely, the free communication sessions at the Congress, such as ‘Palliative care in advanced dementia’ and ‘Guidelines on the end-of-life care of people with dementia’, will help us in responding to the educational needs of primary health professionals as well as family members. As a frontline nurse, up-to-date clinical knowledge, practical experience, and educational skills are equally important, so I appreciate the abundant opportunities to meet, listen to, and exchange with other dedicated nurses and different professionals in this field—I am sure the EAPC Congress will be both inspiring and rewarding! l IJPN

Shared Care in Basic Level Palliative Home Care: Organizational and Interpersonal Challenges

Little is known about the existing barriers to cooperation among health professionals in basic level palliative care for terminally ill patients with cancer in primary health care. The aim of this study was to analyze health professionals' views on interprofessional cooperation in basic level palliative home care for terminally ill cancer patients. This study was a qualitative, descriptive study based on 7 semistructured group interviews conducted in the former Aarhus County, Denmark. Forty-three health professionals (23 family physicians, 5 chief physicians, and 15 home care nurses) were interviewed. Two main categories of problems were identified: (1) the organization of palliative home care (need for proactive planning from the start of the palliative trajectory, clear distribution of tasks, advancement of more efficient communication pathways, and improved accessibility to all health professionals) and (2) interaction between health professionals (increased knowledge of and respect for the competencies of other health occupations and individuals). The study indicates problems with respect to both the organization of the basic level palliative home care and the working culture among health professionals. The main issues: distribution of tasks, information exchange, availability, respect, and personal acquaintance are pivotal to improve the delivery of palliative home care, to training in palliative care and warrant future research.

Associations between successful palliative trajectories, place of death and GP involvement

Objective. General practitioner (GP) involvement may be instrumental in obtaining successful palliative cancer trajectories. The aim of the study was to examine associations between bereaved relatives’ evaluation of palliative cancer trajectories, place of death, and GP involvement. Design. Population-based, cross-sectional combined register and questionnaire study. Setting. The former Aarhus County, Denmark. Subjects. Questionnaire data on GPs’ palliative efforts and relatives’ evaluations of the palliative trajectories were obtained for 153 cases of deceased cancer patients. Main outcome measures. A successful palliative trajectory as evaluated retrospectively by the relatives. Results. Successful palliative trajectories were statistically significantly associated with home death (PR 1.48 (95% CI 1.04; 2.12)). No significant associations were identified between the evaluations of the palliative trajectory at home and GP involvement. “Relative living with patient” (PR 1.75 (95% CI: 0.87; 3.53)) and “GP having contact with relatives” (PR 1.69 (95% CI 0.55; 5.19)) were not significantly associated, but this may be due to the poor number of cases included in the final analysis. Conclusion. This study indicates that home death is positively associated with a higher likelihood that bereaved relatives will evaluate the palliative trajectory at home as successful. No specific GP services that were statistically significantly associated with higher satisfaction among relatives could be identified, but contact between GPs and relatives seems important and the impact needs further investigation.