INTRODUCTION: The collaboration between palliative care and neurology has developed over the last 25 years and this study aimed to ascertain the collaboration between the specialties across Europe.
METHODS: This online survey aimed to look at collaboration across Europe, using the links of the European Association for Palliative Care and the European Academy of Neurology.
RESULTS: 298 people completed the survey-178 from palliative care and 120 from neurology from over 20 countries across Europe. They reported that there was good collaboration in the care for people with amyotrophic lateral sclerosis and cerebral tumours but less for other progressive neurological diseases. The collaboration included joint meetings and clinics and telephone contacts. All felt that the collaboration was helpful, particularly for maintaining quality of life, physical symptom management, psychological support and complex decision making, including ethical issues.
DISCUSSION: The study shows evidence for collaboration between palliative care and neurology, but with the need to develop this for all neurological illness, and there is a need for increased education of both areas.
Background and Purpose: Patients with severe, progressive multiple sclerosis (MS) have complex physical and psychosocial needs, typically over several years. Few treatment options are available to prevent or delay further clinical worsening in this population. The objective was to develop an evidence-based clinical practice guideline for the palliative care of patients with severe, progressive MS.
Methods: This guideline was developed using the Grading of Recommendations Assessment, Development and Evaluation methodology. Formulation of the clinical questions was performed in the Patients–Intervention–Comparator–Outcome format, involving patients, carers and healthcare professionals (HPs). No uniform definition of severe MS exists: in this guideline, constant bilateral support required to walk 20 m without resting (Expanded Disability Status Scale score >6.0) or higher disability is referred to. When evidence was lacking for this population, recommendations were formulated using indirect evidence or good practice statements were devised.
Results: Ten clinical questions were formulated. They encompassed general and specialist palliative care, advance care planning, discussing with HPs the patient's wish to hasten death, symptom management, multidisciplinary rehabilitation, interventions for caregivers and interventions for HPs. A total of 34 recommendations (33 weak, 1 strong) and seven good practice statements were devised.
Conclusions: The provision of home-based palliative care (either general or specialist) is recommended with weak strength for patients with severe, progressive MS. Further research on the integration of palliative care and MS care is needed. Areas that currently lack evidence of efficacy in this population include advance care planning, the management of symptoms such as fatigue and mood problems, and interventions for caregivers and HPs.
Background: Palliative and Hospice Care (PHC) focuses on improving quality of life for anyone who has a serious illness. Multiple Sclerosis (MS) patients have significant PHC needs, yet PHC still mostly attends to cancer patients. The implemented and evaluated nationwide PHC–MS hotline (Strupp et al., 2017) appeared to provide a useful service to patients.
Objectives: Prospective follow-up study to evaluate the impact of the hotline and analyse challenges and possible barriers to integrating PHC services.
Methods: Information on implementing PHC services was gathered through follow-up hotline consultations utilising a standardised documentary sheet. Data was analysed descriptively and several individual cases are presented.
Results: Of 303 calls to the hotline (54.5% female, mean age 51 years, 87.7% chronic progressive MS, mean duration of illness 17 years, median EDSS 8), for 84 (27.7%) PHC services were indicated. Of these 84 patients, 32 agreed to follow-up calls which were conducted at least once. For 6 (19%) patients, PHC service integration was successful. For 5 (16%) PHC was refused. For 5 (16%) PHC did not fit current patient needs, and for 7 (22%) PHC has not yet been contacted by patients (or caregivers). For a further 9 (28%) follow-ups revealed that no more consultation was possible (e.g., caller lost to follow-up).
Conclusion: The PHC approach and its services as well as legislation are still highly focused on cancer care, although patients with long-term neurological conditions would likely benefit greatly from them.
BACKGROUND: General practitioners (GPs) are important providers and coordinators of palliative home care (PHC). Through this double role, their perspectives and their treatment decisions influence PHC fundamentally. This study aims to gain deeper insights into GPs' perspectives regarding PHC in North Rhine, Germany.
METHODS: An explorative, semistructured focus group was conducted with 7 doctors. The researchers performed content analysis. Main topics were GPs' role definition in PHC and GPs' medical activities in PHC.
RESULTS: Participating GPs describe their role in PHC, based on high motivation and positive attitudes toward PHC as a hybrid role: coordinator, provider (mostly in general PHC), and referrer (gateway to palliative care [PC] specialists). According to GPs' medical activity, participants describe moderate expertise, demanding tasks, and elaborate PHC provision for GPs. Participants stressed the importance of PC in GPs' work. But also PC is a small field in general practice. GPs' PHC benefits from the deep trust resulting from the often close and long-term GP-patient relationship. Complexity and bureaucracy of PHC structures as well as the lack of resources and multidisciplinary cooperation are named as barriers for providing PHC. The highest level of care is reached in specialized PHC, which only very few, severely impaired patients need.
CONCLUSIONS: Participating GPs see themselves as important PHC providers as well as referrers and coordinators. Complexity and discontinuity in PC arrangements create challenges for their provision. Therefore, they long for reduced bureaucratic burdens.
BACKGROUND: The purpose of palliative medicine is to optimize the quality of life of patients with incurable, progressive diseases. The care delivered in actual clinical practice is not uniform and often takes insufficient account of the currently available scientific evidence.
METHODS: In accordance with the methodological directives on systematic literature reviews and consensus-finding that have been issued by the German Oncology Guideline Program (Leitlinienprogramm Onkologie), a nationwide, representative group of experts updated the previously published seven chapters of the S3 (evidence-based and consensus-based) guideline and formulated new recommendations on a further eight topics in palliative care.
RESULTS: Non-drug options for the treatment of fatigue include aerobic exercise and psycho-educative methods, particularly cognitive behavioral therapy. Sleep disturbances can be treated with improved sleep hygiene and relaxation techniques, as well as with drugs: Z substances for short-term and sedating antidepressants for intermediate-term treatment. For nausea and vomiting, the first line of treatment consists of antidopaminergic drugs, such as haloperidol, or drugs with an antido- paminergic effect combined with a further receptor affinity, such as metoclopramide. For patients suffering from malignant intestinal obstruction (MIO), an important con- sideration for further treatment is whether the obstruction is complete or incomplete. Psychotherapeutic interventions are indicated for the treatment of anxiety.
CONCLUSION: Multiple studies have confirmed the benefit of the early integration of palliative care for achieving the goals of better symptom control and maintenance of derate quality of evidence supporting the management of certain symptoms in patients with incurable cancers.
OBJECTIVE: Patients' desire to die (DD) is rarely discussed in palliative care (PC) due to health professionals' (HPs) feeling of uncertainty. The aim of the study was to develop and evaluate a training to increase HPs' self-confidence in responding professionally to patient's DD and to assess the feasibility of this approach.
METHODS: The training course was developed via focus groups and relevant literature and refined with an advisory board. An evaluation design was developed to evaluate training outcomes and to examine feasibility. To assess self-confidence, knowledge, skills, and attitudes: (1) standardized surveys were applied at T1 (before training), T2 (directly after), and T3 (3 months later), and were analyzed by descriptive and non-parametric statistics; and (2) participants' open feedback was summarized by content.
RESULTS: A two-day multi-disciplinary training was developed to improve self-confidence via diverse teaching methods. Twenty-four HPs from general and specialized PC were participated. Via self-rating on Likert scales at three time points, improvements were seen at T1, T2, and partly remained at T3, especially in the overall item of self-confidence in communicating with patients about their DD (means: 4.3. at T1, 5.7 at T2, and 5.9 at T3; on a 7-point scale with 1 = lowest value and 7 = highest value). Fewer improvements were found in skills (using different approaches) and attitudes (feeling less helplessness). Open feedback revealed a high appreciation for the training, especially the composition of participants, the role-play, and the overall increase of awareness of the topic.
SIGNIFICANCE OF RESULTS: The developed training on addressing DD meets a need and was perceived by the participants to be of added value. Future research should measure training effects with a validated instrument, including more participants, diverse participant groups, and a control group. Effects on patients should be assessed.
Introduction: Randomised controlled trials (RCTs) have shown a positive effect of early integration of palliative care (EIPC) in various advanced cancer entities regarding patients’ quality of life (QoL), survival, mood, caregiver burden and reduction of aggressiveness of treatment near the end of life. However, RCTs investigating the positive effect of EIPC for patients suffering from glioblastoma multiforme (GBM) are lacking. After modelling work identifying the specific needs of GBM patients and their caregivers, the aim of this study is to investigate the impact of EIPC in this particular patient group.
Methods and analysis: The recruitment period of this multicenter RCT started in May 2019. GBM patients (n=214) and their caregivers will be randomly assigned to either the intervention group (receiving proactive EIPC on a monthly basis) or the control group (receiving treatment according to international standards and additional, regular assessment of QoL (‘optimised’ standard care)).
The primary outcome is QoL assessed by subscales of the Functional Assessment of Cancer Therapy for brain tumour (FACT-Br) from baseline to 6 months of treatment. Secondary outcomes are changes in QoL after 12 (end of intervention), 18 and 24 months (end of follow-up), the full FACT-Br scale, patients’ palliative care needs, depression/anxiety, cognitive impairment, caregiver burden, healthcare use, cost-effectiveness and overall survival.
Ethics and dissemination: The study will be conducted in accordance with the Declaration of Helsinki and has been approved by the local ethics committees of the University Clinics of Cologne, Aachen, Bonn, Freiburg and Munich (LMU). Results of the trial will be submitted for publication in a peer-reviewed, open access journal and disseminated through presentations at conferences.
Trial registration number German Register for Clinical Studies (DRKS) (DRKS00016066); Pre-results.
Some end-of-life aspects have become a significant political and social issue such as elderly care and euthanasia. But hardly anything is known about how the general public in Germany thinks about death and dying more generally. Therefore, we conducted a representative online survey (N = 997) regarding 21 end-of-life aspects. Differences between subgroups were analyzed by conducting analyses of variance and Tukey honestly significance difference post hoc tests and by performing t tests. The findings revealed that the general public is open to engaging with topics of death, dying, and grief and that death education might even be promoted for children. Most participants appraised dealing with the finitude of life as part of a good life, but few have contemplated death and dying themselves so far. Attitudes and perceptions were related to age, subjective health, religious denomination, and gender. The survey provides useful implications for community palliative care, death education, and communication with dying people.
Background: There is growing interest to integrate palliative care and its structures into the care of neurological patients. However, in Germany there is no comprehensive assessment tool capturing the symptoms of patients with advanced neurological diseases.
Aim: To validate a newly developed palliative care measurement tool based on an extension of the validated core documentation system Hospice and Palliative Care Evaluation considering additional neurological issues (HOPE+).
Design: Prospective, observational study using HOPE+ and as external criteria, the Eastern Cooperative Oncology Group (ECOG) performance status and the 12 months “surprise” question (12-SQ) in a neurological population, and assessment for its construct validity and diagnostic accuracy.
Setting/participants: All newly admitted patients to the Department of Neurorehabilitation, Dr. Becker Rhein-Sieg-Clinic aged 18–100 years (#DRKS00010947).
Results: Data from 263 patients (63 ± 14 years of age) were analyzed. HOPE+ revealed a moderately correlated six-factor structure (r = –0.543–0.525). Correlation analysis to evaluate discriminant validity using ECOG as external criterion was high (rs(261) = 0.724, p < 0.001) and confirmed for severely affected patients by adding the 12-SQ (“No”-group: 48.00 ± 14.92 vs “Yes”-group: 18.67 ± 7.57, p < 0.009). Operating characteristics show satisfactory diagnostic accuracy (area under the curve: 0.746 ± 0.049, 95% confidence interval = 0.650–0.842).
Conclusion: HOPE+ demonstrates promising psychometric properties. It helps to assess palliative care issues of patients in neurological settings and, in combination with the 12-SQ, conceivably conditions when to initiate the palliative care approach in a population underrepresented in palliative care structures so far.
To individually plan end-of-life care, open communication about a person's preferences and attitudes toward the end of life can facilitate dignity and quality of life in patients and relatives. To improve communication, structured guiding tools might be used as door openers. However, most tools focus on care preferences and decisions without assessing the person's underlying attitudes in detail. This study aims to get insights into specific requirements and conditions for communication about the end of life in various end-of-life care settings. Four focus groups were conducted with volunteers and professionals from nursing and psychosocial care (16 females, 2 males) working in hospice and palliative care and long-term care settings in Germany. A semistructured interview guideline on experiences and aspects associated with end-of-life conversations was used. Interviews were audiotaped, transcribed verbatim, and analyzed by a content analytic approach. Having end-of-life discussions primarily depended on a pleasant atmosphere, trusting bonds between conversation partners, and professional attitudes of staff members. Nursing home staff felt obligated to initiate conversations, but some reported insecurities doing so. Starting "early," including relatives, and having continuous discussions seemed beneficial for end-of-life conversations. Implementing conversations into existing care structures and using low-threshold impulses to start conversations were helpful. Individualized approaches should be preferred. Each staff member can be a partner in detailed conversations about end-of-life attitudes, but some felt unprepared doing so. Further skill training concerning end-of-life discussions is needed. Communication might be facilitated by open-format tools using low-threshold impulses when conditions of the care setting are considered.
PURPOSE: Palliative care (PC) involves many health care providers leading to a high complexity of structures that requires efficient coordination as provided by case management (CM). Our study aimed to evaluate the effects of CM newly implemented in a specialised palliative care unit by evaluating team members' tasks and time resources before (T0) and after implementation (T1). It was hypothesised that team members would be able to spend less time on organisational and administrative tasks and more time on patient care.
METHODS: A prospective pre-post study design was used. Time distribution of different tasks at T0 and T1 was compared between three different professional groups: physicians, nursing staff and social work. To document their tasks and time required, a documentation form with several items for each profession was developed. Data was analysed using t tests for independent samples.
RESULTS: After Bonferroni correction, a significant pre-post difference was found for the time spent on "discharge interview and discharge" as rated by the physicians (p < .001) with less time spent on this activity after CM implementation. The nursing staff had significantly more time for "conversations with patients" (p < .001) after CM implementation. Moreover, they spent significantly less time on "patient-related requests/advice by telephone" (p < .001) and "discussions with relatives/participation in family discussions" at post-assessment (p < .001). The social worker had significantly more time for "patient advice and support services" (p = .013) after CM implementation.
CONCLUSIONS: Integrating CM can be time efficient and ensures team members to spend more time on their core tasks in patient care.
Background: The 12-months "surprise" question (12-SQ) for estimating prognosis and the need for integrating palliative care (PC) services has not yet been investigated for neurological patients.
Objective: Test the value of the 12-SQ on a sample of neurorehabilitation patients.
Methods: All patients newly registered in the Department of Neurorehabilitation, Dr. Becker Rhein-Sieg-Clinic (8/2016-03/2017) were asked to participate. The treating neurorehabilitation physicians (NP) and an external consulting PC physician (PCP) independently estimated patients' prognosis using the 12-SQ; while symptom burden was independently assessed using the standardized palliative outcome measurement HOPE-SP-CL, a set of additional neurological issues, and ECOG. Follow-up with consenting patients 12 months later was via telephone. Descriptive and inferential statistics were utilized in data analysis.
Results: Of 634 patients, 279 (44%) patients (male: 57.7%, female: 42.3%; mean age: 63 ± 14) (or, alternatively, their legal representative) consented and were assessed at baseline. Per patient NP and PCP both answered the 12-SQ with "Yes" (164), with "No" (42), or had different opinions (73). The "No" group displayed the highest symptom burden on all three measures for both disciplines. Overall, PCP scored higher (i.e., worse) than NP on all measures used. Follow-up was possible for 236 (drop-out: 15.4%) patients (deceased: 34 (14.4%), alive: 202 (85.6%)). Baseline scores on all measures were higher for deceased patients compared to those still living. Prognostic characteristics were: sensitivity: NP 50%, PCP 67.6%; specificity: NP 86.1%, PCP 70.3%, p < 0.001; positive predictive value: NP 37.8%, PCP 27.7%; negative predictive value: NP 91.1%, PCP 92.8%; area under the curve: NP 0.68, PCP 0.69; success rate: NP 80.9%, PCP 69.9%, p = 0.002. Regression analysis indicated that age, dysphagia and overburdening of family (NP answering the 12-SQ), dysphagia and rehabilitation phase (PCP answering the 12-SQ) were associated with increased likelihood of dying within 12 months. Without the 12-SQ as relevant predictor, age, dysphagia and ECOG were significant predictors (NP and PCP).
Conclusion: Combining the 12-SQ with a measurement assessing PC and neurological issues could potentially improve the 12-SQ's predictive performance of 12-month survival and help to identify when to initiate the PC approach. Clinical experiences influence assessment and prognosis estimation.
BACKGROUND: Patient and public involvement in clinical practice guideline development is recommended to increase guideline trustworthiness and relevance.
OBJECTIVE: To engage multiple sclerosis (MS) patients and caregivers in definition of the key questions to be answered in the EAN Guideline on Palliative Care of People with Severe MS.
METHODS: A mixed methods approach was used: International online survey launched by the national MS societies of eight countries, after pilot testing/debriefing on 20 MS patients and 18 caregivers; focus group meetings (FGMs) of Italian and German MS patients and caregivers.
RESULTS: Of 1199 participants, 951 (79%) completed the whole online survey, and 934 from seven countries were analyzed: 751 (80%) were MS patients (74% women, mean age 46.1) and 183 (20%) caregivers (36% spouses/partners, 72% women, mean age 47.4). Participants agreed/strongly agreed on inclusion of the nine pre-specified topics (from 89% for 'advance care planning' to 98% for 'multidisciplinary rehabilitation'), and <5% replied 'I prefer not to answer' to any topic. There were 569 free comments: 182 (32%) on the pre-specified topics, 227 (40%) on additional topics (16 guideline-pertinent), and 160 (28%) on outcomes. Five FGMs (three of MS patients, two of caregivers, overall 35 participants) corroborated the survey findings. In addition, they allowed the explanation of the guideline production process, the exploration of patient-important outcomes and of taxing issues.
CONCLUSIONS: MS patient and caregiver involvement was resource and time intensive, but rewarding. It was key for the formulation of the 10 guideline questions, and for the identification of patient-important outcomes.
Background: Palliative care in Parkinson's Disease (PD) patients considerably differs from palliative care in oncology patients. Integrated care models are a concept to support patients and improve management of PD symptoms. However, it is not known if the access to PD patients at the end of life can be achieved through integrated care models.
Aim: To analyze an integrated model of care for PD patients with the aim to identify if this integrated model of care has access to PD patients at the end of life.
Material and Methods: The Cologne Parkinson's network was designed as a randomized, controlled prospective clinical trial in order to increase quality of life of PD patients. This innovative model of care integrated a neurologist in private practice, a movement disorder specialist of the University Hospital and a PD nurse. Mortality rates of PD patients during the study period of 6 months were registered and compared with mortality rates of the general population of Germany according to the Federal Statistical Office of Germany. The retrospective post-hoc analysis was conducted after completion of the initial study at the University Hospital and neurologists' practices in the greater area of Cologne, Germany. Eligible patients had a diagnosis of idiopathic PD and were aged 25-85 years.
Results: Parkinson's Disease patients in this trial had an even slightly lower mortality rate as the general population (1.66 v. 2.1%). These results are contradictory and speak for a substantial proportion of late-stage disease patients, who have not been adequately included in this study or have been better treated within this trial. The mean disease duration of patients in this study was around 6 years which resembles the lower range of the mean disease duration at death of PD patients in general.
Conclusions: The results of our post-hoc analysis show, that accessing PD patients in the last phase of their disease is extremely difficult and nearly fails in spite of an integrated care approach. Reasons for poor access and loss of follow-up at the end of life have to be identified and care models for PD patients until the end of life should be developed urgently.
INTRODUCTION: The last year of life constitutes a particularly vulnerable phase for patients, involving nearly all health and social care structures. Yet, little scientific evidence is available that provides insight into the trajectories including the number and types of care setting transitions, transitions into palliative care and the dying phase. Only few studies have focused on difficulties associated with having to move between health and social care settings in the last year of life, although patients face a significant risk of adverse events. The Last Year of Life Study Cologne (LYOL-C) aims to fill this gap.
METHODS AND ANALYSIS: LYOL-C is a mixed-methods study composed of four steps: (1) Claims data collected by the statutory health insurance funds of deceased persons will be analysed with regard to patient care trajectories, health service transitions and costs in the last year of life. (2) Patient trajectories and transitions in healthcare will additionally be reconstructed by analysing the retrospective accounts of bereaved relatives (n=400) using a culturally adapted version of the Views of Informal Carers-Evaluation of Services Short Form questionnaire and the Patient Assessment of Care for Chronic Conditions Short Form questionnaire adapted for relatives. (3) Qualitative interviews with bereaved relatives (n=40-60) will provide in-depth insight into reasons for transitions and effects on patients' quality of life. (4) Focus groups (n=3-5) with Healthcare Professionals will be conducted to discuss challenges associated with transitions in the last year of life.
ETHICS AND DISSEMINATION: Ethical approval has been obtained from the Ethics Commission of the Faculty of Medicine of Cologne University (#17-188). Results will be submitted for publication in peer-reviewed journals and presented at national and international conferences.
TRIAL REGISTRATION NUMBER: The study is registered in the German Clinical Trials Register (DRKS00011925) and in the Health Services Research Database (VfD_CoRe-Net_17_003806).
OBJECTIVE: We aimed to elucidate the views on life as narrated by patients in palliative care (PC) to find out what patients deem to be essential in their life, whether something has changed concerning their view of life in light of the disease, and whether interviewees would like to give others something to take with them.
METHOD: Data were collected from narrative audio and video interviews with 18 inpatients in a specialized PC unit. Interviews were recorded and transcribed verbatim and analyzed using qualitative content analysis applying MAXQDA software. CDs and DVDs with recorded interviews were provided to patients. Result Eighteen interviews were analyzed: 11 audio and 7 video recordings. The age range was 41-80 years. Patients reported on changes in their views on life. Despite it being a complex and painful process, patients still gave examples of benefits experienced during their illness trajectory. Patients identified resources and coping strategies such as meaningful contacts with close others and mindfulness. Shifts have occurred in terms of taking more time for themselves, enjoying the moment, being more calm, and spending more time with family and friends. What patients wanted to pass on to others was to pay attention to the needs of both the self and the others, shape your life individually, confront yourself early with issues of death and dying, and care for your fellow human beings. Patients and relatives valued the opportunity to keep their interview as a CD/DVD. Significance of results: Results support the idea that many people facing terminal illness continue to focus on living and remain within their biographies and the contexts of their lives, even if their functional status declines. Patients and relatives appreciated that interviews were provided as kind of a legacy. Yet, more robust research is needed to decide whether such interviews yield any therapeutic effect.
The implementation of self-reported outcome measurements into clinical routine was tested to help facilitate early access to palliative care (PC) for glioblastoma (GBM)-patients. Measures detail PC symptoms and concerns and caregiver burden. Between January 2014 and December 2016, a total of 337 GBM-patients were discussed during meetings of the neuro-oncology tumor board to examine further treatment options. Each patient, along with their caregivers, was requested to participate in self-assessment using the palliative outcome scale (POS) and the Zarit Burden Interview (ZBI). Analyses encompassed summary statistics, non-parametric tests, visual graphic analysis, content analysis and assessing the utilization of the specialized PC consulting service (SPCCS). Ninety-five (28%) GBM-patients and 71 (21%) caregivers completed the self-assessment. Of these, 20 patients and 12 caregivers repeated the assessment at least once more during follow-up. POS total scores were similar in the group of patients with initial diagnosis [10 (0-31)] and those with later disease stages like recurrent diagnosis [9 (0-25)], but ZBI total scores differed [14 (0-51) vs. 24 (2-62)]. Single item analysis demonstrated that anxiety and worries about the future predominated. Caregivers were torn between high engagement in caring and feeling overburdened. Still, requests for the SPCCS showed no increase. Actual implementation of measures like POS and ZBI for detecting PC concerns and caregiver burden with GBM-patients in the field remains challenging as indicated by the limited response rate and lack of increased requests for the SPCCS. Modified clinical routines including strengthening awareness of PC, and allowing proxy-assessment might help to overcome barriers.
BACKGROUND: A desire to die (DD) is frequent in palliative care (PC). However, uncertainty remains as to the appropriate therapeutic response. (Proactive) discussion of DD is not usually part of standard care. To support health practitioners' (HPs) reactions to a patient's DD, a training program has been developed, piloted and evaluated. Within this framework, a first draft of a semi-structured clinical interview schedule with prompts (CISP) has been developed, including recommendations for action to support HPs' self-confidence. The aim of this study is the further development of the CISP to support routine exploration of death and dying distress and proactive addressing of a DD.
METHODS: This observatory, prospective health services study comprises a three step study design: 1. Revision of the CISP and consensus finding based on semi-structured interviews with patients and a Delphi process with (inter-)national experts, patient representatives and relatives; 2. Increasing confidence in HPs through a 2 day-training program using the consented CISP; 3. A formative quantitative evaluation of conversations between HPs and patients (300 palliative patients at three time points) and a qualitative evaluation based on interview triads of patients, relatives and HPs. The evaluation of conversations will include patient-oriented outcomes, including perceived relationships with HPs and death and dying distress. We will also consider aspects of social inequality and gender.
DISCUSSION: The intervention can provide a framework for open discussion of DD and a basis for enhancing a trustful HP-patient relationship in which such difficult topics can be addressed. The benefits of this study will include (a) the creation of the first consented semi-structured approach to identify and address DD and to respond therapeutically, (b) the multi-professional enhancement of confidence in dealing with patients' DD and an intervention that can flexibly be integrated into other training and education programs and (c) an evaluation of effects of this intervention on patients, relatives and HPs, with attention to social inequality and gender.
TRIAL REGISTRATION: The study is registered in the German Clinical Trials Register ( DRKS00012988 ; registration date: 27.9.2017) and in the Health Services Research Database ( VfD_DEDIPOM_17_003889 ; registration date: 14.9.2017).
BACKGROUND: At the end of life, anxious attitudes concerning the dying process are common in patients in Palliative Care. Measurement tools can identify vulnerabilities, resources and the need for subsequent treatment to relieve suffering and support well-being.
AIM: To systematically review available tools measuring attitudes towards dying, their operationalization, the method of measurement and the methodological quality including generalizability to different contexts.
DESIGN: Systematic review according to the PRISMA Statement. Methodological quality of tools assessed by standardized review criteria.
DATA SOURCES: MEDLINE, PsycINFO, PsyndexTests and the Health and Psychosocial Instruments were searched from their inception to April 2017.
RESULTS: A total of 94 identified studies reported the development and/or validation of 44 tools. Of these, 37 were questionnaires and 7 alternative measurement methods (e.g. projective measures). In 34 of 37 questionnaires, the emotional evaluation (e.g. anxiety) towards dying is measured. Dying is operationalized in general items (n = 20), in several specific aspects of dying (n = 34) and as dying of others (n = 14). Methodological quality of tools was reported inconsistently. Nine tools reported good internal consistency. Of 37 tools, 4 were validated in a clinical sample (e.g. terminal cancer; Huntington disease), indicating questionable generalizability to clinical contexts for most tools.
CONCLUSION: Many tools exist to measure attitudes towards the dying process using different endpoints. This overview can serve as decision framework on which tool to apply in which contexts. For clinical application, only few tools were available. Further validation of existing tools and potential alternative methods in various populations is needed.
BACKGROUND: In 2015, an evidence- and consensus-based palliative care guideline in adults with incurable cancer was published by the German Guideline Program. Barriers and enablers for the guideline implementation of members of the German Association for Palliative Medicine (DGP) were unknown. Therefore, the aims of this study were (1) to evaluate professionals' knowledge, motivation, and outcome expectancy towards already existing recommendations for palliative care and (2) to evaluate the self-experienced competence in five medical key topics presented in the new guideline.
METHODS: A web-based online survey with all DGP members in 2014 using a specifically designed questionnaire including 62 questions was used. Independent predictors for identified barriers were analysed using multivariable logistic regression analyses.
RESULTS: All 4786 members with known email address were invited, 1181 followed the link, 1138 began to answer, and 1031 completed the questionnaire. Fifty-four percent know already existing recommendations concerning palliative care, 8.4% know and use these recommendations; of the latter group, 44.2% do not notice any improvement of their treatment when applying them. Of key symptoms addressed in the guideline, depression was the symptom with lowest perceived competence (63.7 vs. > 90% for other symptoms). Non-physicians and those working in settings with little contact to seriously ill or dying patients feel less competent in almost all symptoms.
CONCLUSION: Emphasis on the high-quality and evidence- and consensus-based character of the guideline should be underlined in future implementation processes. Implementation strategies should focus on depression and non-physicians and those professionals working in settings with little contact to seriously ill patients.