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1.
Psychooncology ; 32(6): 923-932, 2023 06.
Article in English | MEDLINE | ID: mdl-37057315

ABSTRACT

OBJECTIVE: Early and open communication of palliative care (PC) and end-of-life (EoL)-related issues in advanced cancer care is not only recommended by guidelines, but also preferred by the majority of patients. However, oncologists tend to avoid timely addressing these issues. We investigated the role of oncologists' personal death anxiety in the rare occurrence of PC/EoL conversations. METHODS: We conducted a multicenter cross-sectional study assessing oncologists' strengths and difficulties in self-reported and externally rated PC/EoL communication skills as well as their association with death anxiety. Death anxiety was assessed via the Thanatophobia-Scale. PC/EoL communication skills were assessed via validated questionnaires and study-specific items plus an external rating of videotaped medical consultation with simulated patients. A general linear model was conducted to analyze associations. RESULTS: One hundred fifty-three oncologists participated (age: M(SD) = 32.9 years (6.9), 59.5% female). Both from the external and from their own perspective, oncologists had difficulties in addressing PC and the EoL. They avoided those aspects more than other topics in consultations with advanced cancer patients. Death anxiety was associated with more avoidant self-reported communication strategies, lower self-efficacy, less confidence in discussing the EoL and less confidence in discussing patients' goals and wishes, but was not associated with externally rated PC/EoL communication. CONCLUSIONS: Oncologists have experienced and externally observable difficulties in addressing PC and the EoL. Oncologists with higher death anxiety subjectively experience more difficulties. Group supervision and consultation offers might be means to empower oncologists, increase awareness of personal fears and enhance confidence and self-efficacy. This might facilitate earlier PC/EoL communication.


Subject(s)
Neoplasms , Oncologists , Terminal Care , Humans , Female , Adult , Male , Cross-Sectional Studies , Neoplasms/therapy , Neoplasms/epidemiology , Palliative Care , Communication , Death , Anxiety
2.
BMC Palliat Care ; 22(1): 167, 2023 Oct 31.
Article in English | MEDLINE | ID: mdl-37904162

ABSTRACT

BACKGROUND: The desire to be at home is one of the most important needs of patients with advanced, incurable cancers. However, palliative cancer patients may require inpatient hospital care for medical reasons. Virtual reality (VR) could provide an approximation to the individuals' home environment. METHODS: The project consists of 3 parts. All parts are supported by the patient advisory board. In the 1st part of the project, we interview patients, relatives, and the patient advisory board about their wishes and concerns regarding the project. In the 2nd part of the project, patients are offered to view 360° VR videos of their choice (their home, relatives, others if applicable). Effects and side-effects of the intervention are assessed with validated instruments (MIDOS, MDBF, SSQ, SPES). Diagnosis, treatment adherence, medication, and vegetative functionality is determined from the medical records of the patients. In the 3rd part of the project, the results of the study will be discussed with patients, relatives, health care professionals and the patient advisory board regarding implementation. DISCUSSION: This study is the first to investigate whether individualized VR videos have additional benefits over generic VR nature videos on symptom relief, well-being, treatment satisfaction, and adherence in patients with palliative cancer care. A strength of the study is that we can incorporate the results of each part of the project into the subsequent project parts. However, the generalizability might be limited as this is a single-centred study. TRIAL REGISTRATION: Registered at German Clinical Trials Register (Deutsches Register Klinischer Studien; DRKS); registration number: DRKS00032172; registration date: 11/07/2023 https://drks.de/search/de/trial/DRKS00032172 .


Subject(s)
Neoplasms , Virtual Reality , Humans , Palliative Care/methods , Neoplasms/therapy , Health Personnel
3.
BMC Palliat Care ; 22(1): 6, 2023 Jan 14.
Article in English | MEDLINE | ID: mdl-36641450

ABSTRACT

BACKGROUND: Research has shown that routinely assessed, patient-reported outcome measures (PROMs) have positive effects in patients with advanced oncologic diseases. However, the transferability of these results to specialist palliative care is uncertain because patients are more impaired and staff doubt the feasibility and benefits. The aim of this study is to evaluate the feasibility of patient self-assessment of PROMs, their use by staff and the benefits in palliative care wards. METHOD: A multicentre observational study was conducted in the context of the implementation of the Integrated Patient Outcome Scale (IPOS) in three specialist palliative care wards at university hospitals in Germany. All admitted patients who screened positive regarding their ability to complete questionnaires were asked to participate and complete the IPOS on paper weekly, with assistance if necessary. Feasibility of questionnaire completion (e.g. proportion of patients able to complete them), use (e.g. involvement of different professional groups) and benefit (e.g. unexpected information in IPOS as rated by treating physicians) were assessed. Staff members' opinion was obtained in a written, anonymous evaluation survey, patients' opinion in a short written evaluation. RESULTS: A total of 557 patients were screened for eligibility, 235 were assessed as able to complete the IPOS (42.2%) and 137 participated in the study (24.6%). A majority needed support in completing the IPOS; 40 staff members and 73 patients completed the evaluation. Unexpected information was marked by physicians in 95 of the 137 patient questionnaires (69.3%). The staff differed in their opinions on the question of whether this also improved treatment. A majority of 32 staff members (80.0%) were in favour of continuing the use of IPOS (4 against continuation, 4 no answer); 43 (58.9%) patients rated their overall experience of IPOS use as 'positive', 29 (39.7%) as 'neutral' and 1 (1.4%) as 'negative'. CONCLUSIONS: While most staff wished to continue using IPOS, it was a challenge to integrate the effort to support the completion of IPOS into daily practice. Digital implementation was not successful, despite various attempts. To explore the effects on care and patient outcomes, multicentre cluster-randomised trials could be employed. TRIAL REGISTRATION: German Clinical Trials Register DRKS-ID: DRKS00016681 (24/04/2019).


Subject(s)
Hospice and Palliative Care Nursing , Palliative Care , Humans , Palliative Care/methods , Feasibility Studies , Hospitalization , Patient Reported Outcome Measures
4.
BMC Neurol ; 22(1): 161, 2022 Apr 30.
Article in English | MEDLINE | ID: mdl-35490234

ABSTRACT

BACKGROUND: Palliative sedation has become widely accepted as a method to alleviate refractory symptoms in terminally ill patients. Controversies regarding this topic especially concern the use of palliative sedation for psychological symptoms, the use in patients who are not imminently dying and the simultaneous withdrawal of life-sustaining measures. Amyotrophic lateral sclerosis (ALS) is characterized by symptoms including muscle weakness, dysphagia, dysarthria, muscle spasms and progressive respiratory insufficiency. Due to these characteristic symptoms, palliative sedation might be considered to be necessary to alleviate refractory suffering in ALS patients. However, palliative sedation in ALS is only rarely discussed in current medical literature and guidelines. METHODS: A questionnaire survey was conducted among neurologists and palliative care practitioners in Germany. The participants were asked to evaluate the use of palliative sedation in different situations. RESULTS: Two hundred and ninety-six completed questionnaires were analyzed. The results suggest high levels of support for the use of palliative sedation in ALS patients. 42% of the participants stated that they had already used palliative sedation in the treatment of ALS patients. Acceptance of palliative sedation was higher in case of physical symptoms than in case of psychological symptoms. Refusal of artificial nutrition did not lead to a lower acceptance of palliative sedation. Doctors with specialist training in palliative care had already used palliative sedation in ALS patients more often and they were more likely to accept palliative sedation in different situations than the participants without a background in palliative care. CONCLUSION: Our survey showed that palliative sedation in ALS is widely accepted by the attending doctors. In case of psychological symptoms, palliative sedation is looked at with more concern than in case of physical symptoms. The refusal of artificial nutrition does not result in a decreased acceptance of palliative sedation. Doctors with specialist training in palliative care are more likely to approve of palliative sedation in ALS.


Subject(s)
Amyotrophic Lateral Sclerosis , Palliative Care , Amyotrophic Lateral Sclerosis/complications , Amyotrophic Lateral Sclerosis/diagnosis , Amyotrophic Lateral Sclerosis/therapy , Germany/epidemiology , Humans , Neurologists , Palliative Care/methods , Palliative Care/psychology , Surveys and Questionnaires
5.
Support Care Cancer ; 30(4): 3131-3140, 2022 Apr.
Article in English | MEDLINE | ID: mdl-34877613

ABSTRACT

PURPOSE: The purpose of this study is to investigate changes over time in quality of life (QoL) in incurable lung cancer patients and the impact of determinants like molecular alterations (MA). METHODS: In a prospective, longitudinal, multicentric study, we assessed QoL, symptom burden, psychological distress, unmet needs, and prognostic understanding of patients diagnosed with incurable lung cancer at the time of the diagnosis (T0) and after 3 (T1), 6 (T2) and 12 months (T3) using validated questionnaires like FACT-L, National Comprehensive Cancer Network (NCCN) Distress Thermometer (DT), PHQ-4, SCNS-SF-34, and SEIQoL. RESULTS: Two hundred seventeen patients were enrolled, 22 (10%) with reported MA. QoL scores improved over time, with a significant trend for DT, PHQ-4, and SCNS-SF-34. Significant determinants for stable or improving scores over time were survival > 6 months, performance status at the time of diagnosis, and presence of MA. Patients with MA showed better QoL scores (FACT-L at T1 104.4 vs 86.3; at T2 107.5 vs 90.0; at T3 100.9 vs 92.8) and lower psychological distress (NCCN DT at T1 3.3 vs 5; at T2 2.7 vs 4.5; at T3 3.7 vs 4.5; PHQ-4 at T1 2.3 vs 4.1; at T2 1.7 vs 3.6; at T3 2.2 vs 3.6), but also a worsening of the scores at 1 year and a higher percentage of inaccurate prognostic understanding (27 vs 17%) compared to patients without MA. CONCLUSION: Patients with tumors harboring MA are at risk of QoL deterioration during the course of the disease. Physicians should adapt their communication strategies in order to maintain or improve QoL.


Subject(s)
Lung Neoplasms , Quality of Life , Humans , Lung Neoplasms/pathology , Prognosis , Prospective Studies , Quality of Life/psychology , Surveys and Questionnaires
6.
Oncologist ; 26(6): e1058-e1065, 2021 06.
Article in English | MEDLINE | ID: mdl-33687742

ABSTRACT

BACKGROUND: Although current guidelines advocate early integration of palliative care, symptom burden and palliative care needs of patients at diagnosis of incurable cancer and along the disease trajectory are understudied. MATERIAL AND METHODS: We assessed distress, symptom burden, quality of life, and supportive care needs in patients with newly diagnosed incurable cancer in a prospective longitudinal observational multicenter study. Patients were evaluated using validated self-report measures (National Comprehensive Cancer Network Distress Thermometer [DT], Functional Assessment of Cancer Therapy [FACT], Schedule for the Evaluation of Individual Quality of Life [SEIQoL-Q], Patients Health Questionnaire-4 [PHQ-4], modified Supportive Care Needs Survey [SCNS-SF-34]) at baseline (T0) and at 3 (T1), 6 (T2), and 12 months (T3) follow-up. RESULTS: From October 2014 to October 2016, 500 patients (219 women, 281 men; mean age 64.2 years) were recruited at 20 study sites in Germany following diagnosis of incurable metastatic, locally advanced, or recurrent lung (217), gastrointestinal (156), head and neck (55), gynecological (57), and skin (15) cancer. Patients reported significant distress (DT score ≥ 5) after diagnosis, which significantly decreased over time (T0: 67.2%, T1: 51.7%, T2: 47.9%, T3: 48.7%). The spectrum of reported symptoms was broad, with considerable variety between and within the cancer groups. Anxiety and depressiveness were most prevalent early in the disease course (T0: 30.8%, T1: 20.1%, T2: 14.7%, T3: 16.9%). The number of patients reporting unmet supportive care needs decreased over time (T0: 71.8 %, T1: 61.6%, T2: 58.1%, T3: 55.3%). CONCLUSION: Our study confirms a variable and mostly high symptom burden at the time of diagnosis of incurable cancer, suggesting early screening by using standardized tools and underlining the usefulness of early palliative care. IMPLICATIONS FOR PRACTICE: A better understanding of symptom burden and palliative care needs of patients with newly diagnosed incurable cancer may guide clinical practice and help to improve the quality of palliative care services. The results of this study provide important information for establishing palliative care programs and related guidelines. Distress, symptom burden, and the need for support vary and are often high at the time of diagnosis. These findings underscore the need for implementation of symptom screening as well as early palliative care services, starting at the time of diagnosis of incurable cancer and tailored according to patients' needs.


Subject(s)
Neoplasms , Palliative Care , Female , Germany , Humans , Male , Middle Aged , Neoplasms/diagnosis , Neoplasms/therapy , Prospective Studies , Quality of Life , Surveys and Questionnaires
7.
BMC Neurol ; 21(1): 216, 2021 Jun 04.
Article in English | MEDLINE | ID: mdl-34088284

ABSTRACT

BACKGROUND: The concept of clinical ethics consultation (CECs) was implemented to provide support in ethical controversies in clinical settings and are offered in at least every second hospital in Germany. Neurological disorders often require complex decision-making. The aims of this study were to determine which situations lead to CEC in neurology and to investigate the influence of the individual patient's wishes on the recommendation. METHODS: Standardised CEC protocols in the years 2011 to 2017 at the University Hospitals of Goettingen and Jena were retrospectively surveyed. The contents were categorised along existing protocol templates of CEC scenarios and subsequently paraphrased and reduced to significant meanings. RESULTS: 27 CEC scenarios which were facilitated by various professional disciplines were reviewed. Stroke was the most frequent underlying condition. Nearly all patients were not able to consent. Mostly, the relatives acted as representatives or health advocates. In 67 % of cases, a sense of conflict triggered a CEC; in 33 % a sense of uncertainty was the reason for the CEC request. In 21 CEC scenarios, a recommendation was reached in consensus with all parties involved. In 59 % of cases, a decision was made to continue medical therapy. In seven cases, the patient's wishes led to a limitation of therapy, while in just two cases this decision was made primarily relying on the patient's best interest. In only 13 % of cases, a valid advance directive led to respective therapeutic consequences. CONCLUSIONS: CEC is feasible for consensus-finding not only in conflicts, but also in situations of therapeutic uncertainty in neurology. There is a special importance of the patient's wishes in decision-making in neurology. However, only in a few cases were advance directives precise and specific enough to have sufficient and decisive weight in therapeutic decision-making.


Subject(s)
Decision Making , Ethics Consultation , Neurology , Adult , Aged , Aged, 80 and over , Germany , Humans , Middle Aged , Retrospective Studies
8.
BMC Palliat Care ; 19(1): 67, 2020 May 12.
Article in English | MEDLINE | ID: mdl-32398130

ABSTRACT

BACKGROUND: Early integration of palliative care concurrently to standard cancer care is associated with several benefits for patients and their caregivers. However, communication barriers on part of the caring physicians often impede a timely referral to palliative care. This study describes the protocol of the evaluation of a communication skills training aiming to strengthen the ability of physicians to address palliative care related topics adequately and early during disease trajectory. METHODS: We will implement a communication skills training and evaluate it within a prospective, multi-centered, two-armed randomized controlled trial (RCT), which will be conducted at four sites in Germany. Eligible subjects are all physicians treating patients with advanced cancer in their daily routine. An intervention group (IG) receiving a group training will be compared to a wait-list control group (CG) receiving the training after completion of data collection. At pre- and post-measurement points, participants will conduct videotaped conversations with standardized simulated patients (SP). Primary outcome will be the external rating of communication skills and consulting competencies addressing palliative care related topics. Secondary outcomes on core concepts of palliative care, basic knowledge, attitudes, confidence and self-efficacy will be assessed by standardized questionnaires and self-developed items. A further external assessment of the quality of physician-patient-interaction will be conducted by the SP. Longitudinal quantitative data will be analyzed using covariate-adjusted linear mixed-models. DISCUSSION: If the communication skills training proves to be effective, it will provide a feasible intervention to promote an earlier communication of palliative care related topics in the care of advanced cancer patients. This would help to further establish early integration of palliative care as it is recommended by national and international guidelines. TRIAL REGISTRATION: German Clinical Trials Register DRKS00017025 (date of registration: 4 June 2019).


Subject(s)
Clinical Protocols , Neoplasms/therapy , Palliative Care/psychology , Social Skills , Communication , Humans , Palliative Care/methods , Palliative Care/standards
9.
Nurs Ethics ; 26(7-8): 2098-2112, 2019.
Article in English | MEDLINE | ID: mdl-30935285

ABSTRACT

BACKGROUND: Clinical ethics committees have been broadly implemented in university hospitals, general hospitals and nursing homes. To ensure the quality of ethics consultations, evaluation should be mandatory. RESEARCH QUESTION/AIM: The aim of this article is to evaluate the perspectives of all people involved and the process of implementation on the wards. RESEARCH DESIGN AND PARTICIPANTS: The data were collected in two steps: by means of non-participating observation of four ethics case consultations and by open-guided interviews with 28 participants. Data analysis was performed according to grounded theory. ETHICAL CONSIDERATIONS: The study received approval from the local Ethics Commission (registration no.: 32/11/10). FINDINGS: 'Communication problems' and 'hierarchical team conflicts' proved to be the main aspects that led to ethics consultation, involving two factors: unresolvable differences arise in the context of team conflicts on the ward and unresolvable differences prevent a solution being found. Hierarchical asymmetries, which are common in the medical field, support this vicious circle. Based on this, minor or major disagreements regarding clinical decisions might be seen as ethical conflicts. The expectation on the clinical ethics committee is to solve this (communication) problem, but the participants experienced that hierarchy is maintained by the clinical ethics committee members. DISCUSSION: The asymmetrical structures of the clinical ethics committee reflect the institutional hierarchical nature. They endure, despite the fact that the clinical ethics committee should be able to detect and overcome them. Disagreements among care givers are described as one of the most difficult ethically relevant situations and should be recognised by the clinical ethics committee. On the contrary, discussion of team conflicts and clinical ethical issues should not be combined, since the first is a mandate for team supervision. CONCLUSION: To avoid dominance by physicians and an excessively factual character of the presentation, the case or conflict could be presented by both physicians and nurses, a strategy that strengthens the interpersonal and emotional aspects and also integrates both professional perspectives.


Subject(s)
Health Personnel/psychology , Interprofessional Relations/ethics , Adult , Attitude of Health Personnel , Ethics Consultation , Female , Grounded Theory , Health Personnel/ethics , Health Personnel/statistics & numerical data , Humans , Interviews as Topic/methods , Male , Middle Aged , Prospective Studies , Qualitative Research , Retrospective Studies , Surveys and Questionnaires
10.
Ther Umsch ; 75(2): 123-126, 2018 Jul.
Article in German | MEDLINE | ID: mdl-30022722

ABSTRACT

Palliative Care - not just for the final phase. A rewiev of evidence Abstract. Already in early stages of their disease, patients with incurable, advanced cancer and non-cancer disease suffer from a range of limitations of their quality of life due to symptoms (i. e. pain, dyspnoea) or psychical, social or spiritual problems. Palliative Care aims to maintain the patients' quality of life and is applicable already early in the disease trajectory and not only at the end of life. As providers of general (basic) palliative care, all health care providers from all disciplines should therefore hold basic expertise in symptom control and communication. Also, they should be aware of psychical, social and spiritual dimensions of suffering. The integration and cooperation of health care services should be driven by the actual needs and demands of the individual patient. In addition to general palliative care, specialist palliative care is provided by multi-professional teams, for example, as specialist palliative home care teams or palliative care services in hospitals. In the future, it will be paramount to routinely identify patients with complex needs and severe (symptom) burden who will benefit most from early integration of specialist palliative care.


Subject(s)
Evidence-Based Medicine , Palliative Care/methods , Terminal Care/methods , Communication , Home Care Services , Humans , Interdisciplinary Communication , Intersectoral Collaboration , Needs Assessment , Patient Care Team , Physician-Patient Relations
12.
Article in German | MEDLINE | ID: mdl-27878605

ABSTRACT

Crisis at the end of life are exceptional challenges for patients, relatives and therapists. With respect to the individual treatment goals and the patients' autonomy, therapeutic action should be commenced in an adequate manner in order to preserve the patients' quality of life as much as possible. Advance care planning for specific critical scenarios may be helpful in order to treat patients according to their wishes and values even if they are not capable to express themselves. Furthermore, a crisis plan can define the scope of action for therapists in emergency situations. Dyspnea, pain and delirium are symptoms that may often lead to emergency calls. In such cases, pharmacological and other treatment options are available. Options for causal therapy should be checked and performed if adequate. Opioids are used to relieve pain and dyspnea. In a state of delirium, highly potent neuroleptics and atypical antipsychotics are used. For the treatment of anxiety or restlessness benzodiazepines can be prescribed. Sedative medication may reduce stress, for instance in the case of acute catastrophic bleeding. Palliative sedation is an ultima ratio concept for refractory symptoms at the end of life. Clinical practice guidelines (such as the German guideline "Palliative care for patients with incurable cancer") may provide an overview of the evidence base on symptom-guided therapy at the end of life.


Subject(s)
Clinical Decision-Making/methods , Crisis Intervention/organization & administration , Critical Illness/therapy , Palliative Care/organization & administration , Patient Care Planning/organization & administration , Terminal Care/organization & administration , Advance Care Planning/organization & administration , Germany , Humans , Models, Organizational
13.
BMC Med Educ ; 15: 151, 2015 Sep 17.
Article in English | MEDLINE | ID: mdl-26383546

ABSTRACT

BACKGROUND: In 2009, palliative medicine became an integrated and compulsory part of undergraduate training in Germany by legislation. After a transitional period, all medical faculties were required to provide adequate teaching with an according examination and certification procedure. In parallel, we conducted bi-annual surveys on all medical faculties in Germany to examine for potential discrepancies between the implementation process and their intended consequences on teaching time and content. METHODS: Four consecutive bi-annual surveys (2006, 2008, 2010, 2012) of all 36 medical faculties in Germany were performed, using purposively for this study developed questionnaires. Likert scales and closed questions were analyzed descriptively. RESULTS: Medical Faculty response rate increased from 50 % in 2006 to 88.9 % in 2012. Teaching coordinators in palliative medicine primarily had an anesthesiology or internal medicine background. There was a noted increase over time of the involvement of specialized palliative care units (PCUs) as providing the setting for education. The number of faculties that were able to offer a complete 16 weeks of training in palliative medicine during the "final year" rose steadily. In addition, increased patient-centered teaching formats have been implemented over time. The faculties which offered innovative teaching formats with actors as patients (standardized patient interaction) increased, as did the total number of mandatory examinations. The number of faculties that provided compulsory teaching in a condensed manner within a single academic year increased sharply from 3 of 31 responding faculties in 2010 to 19 of 32 responding faculties in 2012. CONCLUSIONS: Until now, teaching conditions and structures in palliative medicine in Germany have proven to be extraordinarily heterogeneous. Although professorships ("Chairs") in palliative medicine proved to be particularly beneficial and supportive in curricular and structural development, only a minority of faculties provide leading academic positions in palliative medicine.


Subject(s)
Education, Medical, Undergraduate/statistics & numerical data , Palliative Medicine/education , Curriculum/standards , Curriculum/trends , Education, Medical, Undergraduate/legislation & jurisprudence , Education, Medical, Undergraduate/methods , Germany , Health Plan Implementation/legislation & jurisprudence , Health Plan Implementation/statistics & numerical data , Humans , Palliative Medicine/legislation & jurisprudence , Palliative Medicine/statistics & numerical data , Surveys and Questionnaires
14.
Article in German | MEDLINE | ID: mdl-25673015

ABSTRACT

Specialized palliative home care ("Spezialisierte Ambulante Palliativversorgung", SAPV) denotes an intensified, multi-professional support system at home for patients suffering from complex symptoms and needs associated with severe and advanced illness. In 2007, a change in legislation guaranteed SAPV to any patient (covered by public health insurance) in need of specialized palliative care. Despite further specifications by federal institutions, SAPV has been transferred into German clinical practice in a very regionally diverse manner. This contribution describes the legislative and conceptual framework of SAPV, the financial and clinical aspects, and its future perspectives for the comprehensive palliative care of patients with complex demands.


Subject(s)
Delivery of Health Care, Integrated/organization & administration , Health Services Accessibility/organization & administration , Home Care Services/organization & administration , Models, Organizational , Palliative Care/organization & administration , Germany , Organizational Objectives , Program Evaluation/methods
15.
Article in German | MEDLINE | ID: mdl-25634376

ABSTRACT

Palliative medicine (or palliative care, referring to its multi-professional character) denotes a comprehensive care concept for patients suffering from incurable and progressive disease, and their relatives. Specialized support structures are necessary, including (inpatient) palliative care units, (inpatient) consultation services, and (outpatient) specialized palliative home care services. Further, research and education is mandatory in order to gain and to spread this particular expertise and attitude. This contribution focuses on the current situation and on the development of palliative care structures in Germany.


Subject(s)
Ambulatory Care/trends , Palliative Care/trends , Palliative Medicine/education , Palliative Medicine/organization & administration , Terminal Care/trends , Biomedical Research/trends , Forecasting , Germany , Referral and Consultation/trends
16.
Support Care Cancer ; 22(7): 1825-32, 2014 Jul.
Article in English | MEDLINE | ID: mdl-24535239

ABSTRACT

PURPOSE: Breathlessness is a common and distressing symptom in patients with advanced disease. Patients' self-report is deemed to be the most valid method of symptom assessment. When patients are not capable of self-assessment, professionals' assessment is often used as alternative but evidence on the validity is conflicting. The aim of this study was to compare self- and professionals' assessment of breathlessness regarding presence and severity in patients with advanced disease. METHODS: Secondary analysis of a cross-sectional, multi-centre and nationwide register (HOspice and Palliative Care Evaluation (HOPE)). Documented inpatients from hospices and palliative care units from 2006 to 2008 who completed the self-assessed MInimal DOcumentation System (MIDOS) were included. Professionals' assessment were based on the integrated symptom and problem checklist (symptom scores, 0-3). Cohen's kappa (κ) was used to estimate the 'level of agreement' (LoA). RESULTS: Two thousand six hundred twenty-three patients (mean age, 66.9 (SD, 12.8); 54.4% female; median Eastern Cooperative Oncology Group score, 3; 95.9% with malignant disease) were analysed. Prevalence of breathlessness was 53.4% (1,398 patients) by professionals' and 53.1% (1,410 patients) by self-assessment. Presence was correctly evaluated by professionals in 80.9% of cases (sensitivity, 81.8%; specificity, 79.8%). Severity of breathlessness was correctly estimated in 65.7% of cases. LoA was good (κ=0.62) for the evaluation of presence of breathlessness and moderate (κ=0.5) for the estimation of severity. The proportion of over- or underestimated scores was similar. CONCLUSIONS: If patient's self-rating, the gold standard of symptom assessment, is not possible, professionals' assessment might be a valid alternative, at least for assessing the presence of breathlessness.


Subject(s)
Dyspnea/diagnosis , Neoplasms/physiopathology , Adult , Aged , Cross-Sectional Studies , Dyspnea/classification , Dyspnea/etiology , Dyspnea/therapy , Female , Hospices , Humans , Male , Middle Aged , Neoplasms/therapy , Palliative Care , Registries , Regression Analysis , Self Report
17.
BMC Palliat Care ; 13: 45, 2014.
Article in English | MEDLINE | ID: mdl-25276095

ABSTRACT

BACKGROUND: A minority of patients with incurable and advanced disease receive specialised palliative care. Specialised palliative care services that complement the care of difficult and complex cases ought to be integrated with services that deliver general care for most patients. A typical setting in which this integrative concept takes place is the hospital setting, where patients suffering from incurable and advanced disease are treated in many different departments. The aim of the study is to investigate the profile and spectrum of a palliative care consultation service (PCCS) at a German university hospital with special reference to pain therapy. METHODS: We retrospectively analysed the PCCS documentation of three years. RESULTS: Most patients were referred from non-surgical departments, 72% were inpatients, and 28% were outpatients. 98% of the patients suffered from cancer. Counselling in pain therapy was one of the key aspects of the consultation: For 76% of all consulted patients, modifications of the analgesic regimen were recommended, which involved opioids in 96%. Recommendations on breakthrough-pain medication were made for 70% of the patients; this was an opioid in most cases (68%). The most commonly used opioid was morphine. For 17% of the patients, additional diagnostic procedures were recommended. Besides pain management palliative care consultation implied a wide range of recommendations and services: In addition to organising home care infrastructure, palliative care services supported patients and their families in understanding the life-limiting diseases. They also coordinated physical therapy and social and legal advice. CONCLUSION: This survey clearly shows that for a consultation service to support patients with incurable or advanced disease, a multi-disciplinary approach is necessary to meet the complex requirements of a needs-adapted palliative care in inpatient or outpatient settings. Timely integration of palliative expertise may support symptom control and may give the required advice to patients, their carers, and their families.

18.
BMC Med Educ ; 14: 15, 2014 Jan 27.
Article in English | MEDLINE | ID: mdl-24467685

ABSTRACT

BACKGROUND: Teaching in palliative care aims not only at providing students with specialized knowledge in symptom therapy in advanced disease, but also at developing a professional attitude consistent with the principles and philosophy of palliative care. Reflecting about one's own or the patient's death and dying is considered essential for empathic patient care. In medical education the dissection course is often the first encounter with the issue of death and dying and represents a significant emotional challenge to many medical students.Against this background we implemented a new course element in preparation for the dissection course, offering opportunity to reflect own experiences with death and dying and providing support in finding a balance between authentic empathy and pragmatic action towards deceased persons. We discuss issues such as dignity and professional distance and reason whether guided support for medical students regarding these issues might influence their future attitude as doctors caring for their patients. METHODS: In tandem, we performed a formal evaluation of the seminar and explored the students' experiences with death and dying, their expectations and fears in the run-up to the dissection course and their attitude towards dissection. RESULTS: This article describes the structure and the concept of this new interdisciplinary course element and presents the results of the formal course evaluation as well as the explorative part of the accompanying research. Medical students had broad experiences with death and dying even before the dissection course. 89.1% of students had worried about some kind of emotional stress during the dissection course before, but 61.7% stated to have actually perceived emotional stress afterwards. The willingness to donate one's own body for anatomy purposes decreased significantly during the course. The given room for reflection and discussion was appreciated by the students, who felt that the effects of this seminar might be of use even beyond the dissection course. CONCLUSION: This new course element successfully assisted medical students during the dissection room experience and gave opportunity to reflection and discussion on death and dying. The accompanying research confirmed the demand for support and gave insight into experiences, emotions and attitudes of medical students.


Subject(s)
Anatomy/education , Attitude to Death , Dissection/psychology , Education, Medical, Undergraduate , Emotions , Students, Medical/psychology , Adolescent , Adult , Death , Female , Germany , Humans , Male , Stress, Psychological , Surveys and Questionnaires , Young Adult
19.
Nurs Ethics ; 20(7): 771-83, 2013 Nov.
Article in English | MEDLINE | ID: mdl-23715555

ABSTRACT

The study aimed to explore the subjective need of healthcare professionals for ethics consultation, their experience with ethical conflicts, and expectations and objections toward a Clinical Ethics Committee. Staff at a university hospital took part in a survey (January to June 2010) using a questionnaire with open and closed questions. Descriptive data for physicians and nurses (response rate = 13.5%, n = 101) are presented. Physicians and nurses reported similar high frequencies of ethical conflicts but rated the relevance of ethical issues differently. Nurses stated ethical issues as less important to physicians than to themselves. Ethical conflicts were mostly discussed with staff from one's own profession. Respondents predominantly expected the Clinical Ethics Committee to provide competent support. Mostly, nurses feared it might have no influence on clinical practice. Findings suggest that experiences of ethical conflicts might reflect interprofessional communication patterns. Expectations and objections against Clinical Ethics Committees were multifaceted, and should be overcome by providing sufficient information. The Clinical Ethics Committee needs to take different perspectives of professions into account.


Subject(s)
Attitude of Health Personnel , Ethics Committees, Clinical/organization & administration , Ethics Consultation/organization & administration , Ethics, Medical , Ethics, Nursing , Medical Staff, Hospital/ethics , Nursing Staff, Hospital/ethics , Adult , Data Collection , Female , Humans , Interprofessional Relations , Male , Middle Aged , Surveys and Questionnaires , Young Adult
20.
Front Oncol ; 13: 1002499, 2023.
Article in English | MEDLINE | ID: mdl-36776341

ABSTRACT

Objective: Previous symptom prevalence studies show a diverse spectrum of symptoms and a large diversity in symptom intensities in patients being just diagnosed as having incurable cancer. It is unclear, how physical symptoms and psychosocial burden should be recorded in order to determine the variable need for palliative care and further support. Therefore, we compared two different strategies for detecting physical symptoms and psychosocial burden of patients with newly diagnosed incurable cancer and their effects on the further course of the disease. Methods: SCREBEL is a controlled, randomized, non-blinded, longitudinal study of the research network of the Palliative Medicine Working Group (APM) of the German Cancer Society (DKG). We compared: a less complex repeated brief screening for symptoms and burden in patients using the NCCN Distress Thermometer and IPOS questionnaire versus a multidimensional comprehensive assessment using the FACT-G and their entity-specific questionnaires, the PHQ4 scales, SCNS-34-SF, IPOS and NCCN Distress Thermometer. The primary study endpoint was quality of life (QoL), measured using FACT-G, after six months. Secondary study endpoints were QoL by using evaluation of secondary scores (NCCN DT, IPOS, PHQ4, SCNS-SF-34G) at time 6 months, the number of hospital days, the utilization of palliative care, emergency services, and psychosocial care structures. To assess effects and differences, multiple linear regression models were fitted and survival analyses were conducted. Results: 504 patients were included in the study. 262 patients were lost to follow-up, including 155 fatalities. There were no significant differences between the low-threshold screening approach and a comprehensive assessment with respect to symptoms and other aspects of QoL. Using the IPOS, we were able to measure an improvement in the quality of life in the low-threshold screening arm by a decrease of 0.67 points (95%-CI: 0.34 to 0.99) every 30 days. (p<0.001). Data on the involvement of emergency facilities and on supportive services were insufficient for analysis. Conclusion: A comprehensive, multidimensional assessment did not significantly differ from brief screening in preserving several dimensions of quality of life. These findings may positively influence the implementation of structured low-threshold screening programs for supportive and palliative needs in DKG certified cancer centers.DRKS -No. DRKS00017774 https://drks.de/search/de/trial/DRKS00017774.

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