Lene Jarlbæk

Generalist palliative care in hospital – Cultural and organisational interactions. Results of a mixed-methods study

Background: It can be challenging to provide generalist palliative care in hospitals, owing to difficulties in integrating disease-oriented treatment with palliative care and the influences of cultural and organisational conditions. However, knowledge on the interactions that occur is sparse. Aim: To investigate the interactions between organisation and culture as conditions for integrated palliative care in hospital and, if possible, to suggest workable solutions for the provision of generalist palliative care. Design: A convergent parallel mixed-methods design was chosen using two independent studies: a quantitative study, in which three independent datasets were triangulated to study the organisation and evaluation of generalist palliative care, and a qualitative, ethnographic study exploring the culture of generalist palliative nursing care in medical departments. Setting/participants: A Danish regional hospital with 29 department managements and one hospital management. Results: Two overall themes emerged: (1) ‘generalist palliative care as a priority at the hospital’, suggesting contrasting issues regarding prioritisation of palliative care at different organisational levels, and (2) ‘knowledge and use of generalist palliative care clinical guideline’, suggesting that the guideline had not reached all levels of the organisation. Conclusion: Contrasting issues in the hospital’s provision of generalist palliative care at different organisational levels seem to hamper the interactions between organisation and culture – interactions that appear to be necessary for the provision of integrated palliative care in the hospital. The implementation of palliative care is also hindered by the main focus being on disease-oriented treatment, which is reflected at all the organisational levels.

Cancer patients’ first treatment episode with opioids: a pharmaco-epidemiological perspective

GoalThe factors underlying the choice of opioids for cancer patients in primary care are largely unknown. Our aim was to describe cancer patients’ first treatment episode with opioids in relation to disease characteristics and clinical course.Patients and methodsDuring 1997 and 1998, a population-based cohort of 4,006 incident cancer patients from a Danish county was identified. The patients were followed up from diagnosis to death or until 31 December 2003, and data on their use of opioids were obtained from a prescription database.Main resultsEventually, 54% of the cancer patients became incident users of opioids. Opioid treatment was initiated close to the diagnosis date in 20% of the patients. Most incident users (57%) were not terminal when they began using opioids, and 44% survived the first treatment episode. Of those who died, 70% received opioids in their terminal phase. The incidence rates of new opioid users were inversely related to the 5-year cancer survival period. A weak opioid was the first choice in 64% of the non-terminal users and in 43% of the terminal ones. No statistically significant differences in opioid use were found between men and women.ConclusionsOpioid use in cancer patients was not confined to the terminal course. Treatment with opioids should be viewed as a dynamic condition, with patients shifting between periods of use and non-use. The aggressiveness of the cancer and the presence of metastases were characteristics found to be strong determinants of opioid use.

Organization and evaluation of generalist palliative care in a Danish hospital

BackgroundHospitals have a responsibility to ensure that palliative care is provided to all patients with life-threatening illnesses. Generalist palliative care should therefore be acknowledged and organized as a part of the clinical tasks. However, little is known about the organization and evaluation of generalist palliative care in hospitals. Therefore the aim of the study was to investigate the organization and evaluation of generalist palliative care in a large regional hospital by comparing results from existing evaluations.MethodsResults from three different data sets, all aiming to evaluate generalist palliative care, were compared retrospectively. The data-sets derived from; 1. a national accreditation of the hospital, 2. a national survey and 3. an internal self-evaluation performed in the hospital. The data were triangulated to investigate the organization and evaluation of palliative care in order to identify concordances and/or discrepancies.ResultsThe triangulation indicated poor validity of the results from existing methods used to evaluate palliative care in hospitals. When the datasets were compared, several discrepancies occurred with regard to the organization and the performance of generalist palliative care. Five types of discrepancies were found in 35 out of 56 sections in the fulfilment of the national accreditation standard for palliative care. Responses from the hospital management and the department managements indicated that generalist palliative care was organized locally – if at all – within the various departments and with no overall structure or policy.ConclusionsThis study demonstrates weaknesses in the existing evaluation methods for generalist palliative care and highlights the lack of an overall policy, organization and goals for the provision of palliative care in the hospital. More research is needed to focus on the organization of palliative care and to establish indicators for high quality palliative care provided by the hospital. The lack of valid indicators, both for the hospital’s and the departments’ provision of palliative care, calls for more qualitative insight in the clinical staff’s daily work including their culture and acceptance of the provision of palliative care.

Preparing general practitioners to receive cancer patients following treatment in secondary care: a qualitative study.

BackgroundMany patients consider the interface between secondary and primary care difficult, and in particular, the transition of care between these different parts of the healthcare system presents problems. This interface has long been recognized as a critical point for quality of care. The purpose of our study is to formulate solutions to problems identified by cancer patients and healthcare professionals during the transition from hospital back to general practice on completion of primary treatment for cancer.MethodsA qualitative study based on focus groups at a seminar for professionals in both primary and secondary healthcare. Participants discussed solutions to problems which had previously been identified in patient interviews and in focus groups with general practitioners (GPs), hospital doctors, and nursing staff. The data were analyzed using framework analysis.ResultsSolutions, endorsed by all groups at the seminar to improve transition back to general practice after primary treatment for cancer, were: 1) To add nurses’ discharge letters addressing psychosocial matters to medical discharge letters; 2) To send medical discharge letters earlier from some hospital departments to GPs; 3) To provide plans and future affiliations for patients when they leave a department, and 4) To arrange a return visit to general practice dedicated to discussion of the patients’ cancer disease and the treatment experience.ConclusionsThe transition of care of cancer patients appears too complex to be coordinated by administrative standards alone. We recommend that healthcare professionals are more engaged and present in the coordination of care across organizational boundaries.

The epidemiology of long- and short-term cancer survivors. A population-based cohort study exploring denominators for rehabilitation and palliative care programs.

Abstract Introduction. In this study, we present data from a population-based cohort of incident cancer patients separated in long- and short-term survivors. Our aim was to procure denominators for use in the planning of rehabilitation and palliative care programs. Material and methods. A registry-linkage cohort study. All cancer patients, diagnosed from 1993 to 2003 from a 470 000 large population, were followed individually from diagnosis to death or until 31 December 2008. Long-term survivors lived five years or more after the time of the cancer diagnosis (TOCD). Short-term survivors died less than five years after TOCD. Results. The cohort comprised 24 162 incident cancer patients with 41% long-term survivors (N = 9813). Seventy percent of the cohort was 60 + years at TOCD. The 14 349 short-term survivors’ median survival was 0.6 year, and 78% died less than two years after TOCD. A 12 years’ difference in age at TOCD was seen between long- and short-term survivors, with median ages of 60 versus 72 years, respectively. Females comprised 64% of long-term, and 46% of short-term survivors. The proportion of breast and lung cancers differed between the groups: Long-term survivors: 31% breast cancer, 2.4% lung cancer. Short-term survivors: 21% lung cancer, 7.2% breast cancer. Chemotherapy was provided to 15% of all patients, and to 10% of the 60 + year olds. Discussion. The epidemiology of long- and short-term survivors shows significant differences with regard to age at TOCD, cancer types and sex. Two-year crude cancer survival seems as a clinically relevant cut point for characterizing potential “denominators” for rehabilitation or palliative care programs. From this cohort of incident cancer patients, and using two-year survival as a cut point, it could be estimated that 54% would candidate to a “care trajectory” focusing on rehabilitation and 46% a “care trajectory” focusing on palliative care at TOCD.

Likelihood of Death Within One Year Among a National Cohort of Hospital Inpatients in Scotland

To the Editor: We thank Beas and Dı́az-Pardav e for their continued interest in our article demonstrating high burnout among palliative care clinicians. Burnout is ultimately a complex, multifaceted syndrome characterized by varying degrees of emotional exhaustion, depersonalization, and low sense of personal accomplishment. As the authors highlight, a variety of approaches have been used to assess and report on burnout in the literature. Burnout is best considered a continuous variable and the experience of burnout a continuum. A dichotomous categorization (burned out vs. not burned out) is, however, a commonly accepted and practical approach to describe the prevalence of burnout. We applied the most widely used convention to categorize burnout, which considers those with high scores on either the emotional exhaustion and/or depersonalization domain to be experiencing at least one symptom of burnout. Evidence indicates that high scores on either the depersonalization or emotional exhaustion subscales have high discriminatory ability and that a high score in either of these two domains identifies individuals whose degree of burnout results in adverse personal and professional consequences. Evidences also suggest that this approach better identifies those individuals experiencing the adverse consequences of burnout than more restrictive approaches to categorization. Accordingly, there is strong evidence for the way burnout was categorized in our study and the high prevalence of this syndrome among palliative care professionals is cause for concern. Additional studies are now needed to identify practical approaches for health care organizations to reduce burnout and promote engagement in the palliative care workforce.

Likelihood of death among hospital inpatients in New Zealand: prevalent cohort study

Objectives (1) To establish the likelihood of dying within 12 months for a cohort of hospital inpatients in New Zealand (NZ) on a fixed census date; (2) to identify associations between likelihood of death and key sociodemographic, diagnostic and service-related factors and (3) to compare results with, and extend findings of, a Scottish study undertaken for the same time period and census date. National databases of hospitalisations and death registrations were used, linked by unique health identifier. Participants 6074 patients stayed overnight in NZ hospitals on the census date (10 April 2013), 40.8% of whom were aged ≥65 years; 54.4% were women; 69.1% of patients were NZ European; 15.3% were Maori; 7.6% were Pacific; 6.1% were Asian and 1.9% were ‘other’. Setting All NZ hospitals. Results 14.5% patients (n=878) had died within 12 months: 1.6% by 7 days; 4.5% by 30 days; 8.0% by 3 months and 10.9% by 6 months. In logistic regression models, the strongest predictors of death within 12 months were: age ≥80 years (OR=5.52(95% CI 4.31 to 7.07)); a history of cancer (OR=4.20(3.53 to 4.98)); being Māori (OR=1.62(1.25 to 2.10)) and being admitted to a medical specialty, compared with a surgical specialty (OR=3.16(2.66 to 3.76)). Conclusion While hospitals are an important site of end of life care in NZ, their role is less significant than in Scotland, where 30% of an inpatient cohort recruited using similar methods and undertaken on the same census date had died within 12 months. One reason for this finding may be the extended role of residential long-term care facilities in end of life care provision in NZ.