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Background: Decisions to limit treatment (DLTs) are important to protect patients from overtreatment but constitute one of the most ethically challenging situations in oncology practice. In the Ethics Policy for Advance Care Planning and Limiting Treatment study (EPAL), we examined how often DLT preceded a patient's death and how early they were determined before (T1) and after (T2) the implementation of an intrainstitutional ethics policy on DLT., Methods: This prospective quantitative study recruited 1.134 patients with haematological/oncological neoplasia in a period of 2×6 months at the University Hospital of Munich, Germany. Information on admissions, discharges, diagnosis, age, DLT, date and place of death, and time span between the initial determination of a DLT and the death of a patient was recorded using a standardised form., Results: Overall, for 21% (n=236) of the 1.134 patients, a DLT was made. After implementation of the policy, the proportion decreased (26% T1/16% T2). However, the decisions were more comprehensive, including more often the combination of 'Do not resuscitate' and 'no intense care unit' (44% T1/64% T2). The median time between the determination of a DLT and the patient's death was similarly short with 6 days at a regular ward (each T1/T2) and 10.5/9 (T1/T2) days at a palliative care unit. For patients with solid tumours, the DLTs were made earlier at both regular and palliative care units than for the deceased with haematological neoplasia., Conclusion: Our results show that an ethics policy on DLT could sensitise for treatment limitations in terms of frequency and extension but had no significant impact on timing of DLT. Since patients with haematological malignancies tend to undergo intensive therapy more often during their last days than patients with solid tumours, special attention needs to be paid to this group. To support timely discussions, we recommend the concept of advance care planning., Competing Interests: Competing interests: None declared., (© Author (s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. Published by BMJ on behalf of the European Society for Medical Oncology.)

Objective: Many distressed cancer patients do not want or, finally, do not use psychological support. This study aimed at identifying factors associated with the decline of psychological support during hospital stay., Methods: This cross-sectional study included inpatients with different cancer diagnoses. Distress was assessed using the short form of the Questionnaire on Stress in Cancer Patients-Revised (QSC-R10) and the Distress Thermometer (DT). Multivariable logistic regression was used to identify factors associated with decline., Results: Of 925 patients, 71.6% (n = 662) declined psychological support. Male sex (OR = 2.54, 95% CI = 1.69-3.80), low psychosocial distress (OR = 3.76, CI = 2.50-5.67), not feeling depressed (OR = 1.93, CI = 1.24-2.99), perceived overload (OR = 3.37, CI = 2.19-5.20), no previous psychological treatment (OR = 1.88, CI = 1.25-2.83), and feeling well informed about psychological support (OR = 1.66, CI = 1.11-2.46) were associated with decline. Among the patients who indicated clinical distress (46.2%), 53.9% declined psychological support. Male sex (OR = 2.96, CI = 1.71-5.12), not feeling depressed (OR = 1.87, CI = 1.12-3.14), perceived overload (OR = 5.37, CI = 3.07-9.37), agreeableness (OR = 0.70, CI = 0.51-0.95), and feeling well informed about psychological support (OR = 1.81, CI = 1.07-3.07) were uniquely associated with decline in this subgroup., Conclusions: Decline of psychological support is primarily due to psychological factors. Feeling well informed about support emerged as a relevant factor associated with decline. Thus, design of informational material and education about available psychological services seem crucial., (© 2019 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

Background: Cancer patients often face decisions whether to proceed with cancer-specific treatment or to switch to best supportive care. In these decisions, patients' preferences should be determining cornerstones. The aim of this survey was to elicit patients' preferences regarding discussions about forgoing treatment and factors influencing their preferences., Methods: We surveyed 194 patients at the National Center for Tumor Diseases, Germany. Quality of life (FACT-G), cancer-specific distress (QSC-R10), anxiety/depression (PHQ-4/GAD-2), preferences regarding quality/length of life (QQ), patient-physician communication (CARES-SF), and family role (CCAT-P) were assessed., Results: Patients weighting quality of life over lifetime wanted their oncologists to address treatment limitations as early as possible (p = 0.00). Patients striving for a longer lifetime did not want such discussions (p = 0.05). Having discussed treatment limitations was not associated with increased anxiety, depression, or distress. Limiting treatment was discussed only with one-third of the patients with a prognosis of less than 6 months and rather with elderly patients or patients in a worse medical condition. Attributing an important role to family decisions was associated with striving for lifetime (p = 0.01)., Conclusion: Preferences for either quality or length of life were associated with patients' willingness to discuss forgoing cancer-specific treatment. Timely discussion of realistic treatment goals is one way to avoid overtreatment. Patients striving for lifetime require increased attention and opportunities to address prognosis and risks of treatment., (© 2019 S. Karger AG, Basel.)

Objective: Decisions to limit life-prolonging treatment (DLT) are often accompanied by psychological and ethical difficulties. The aim of the study is to investigate prevalence and intensity of moral distress (MD) as well as potential causes experienced by oncology physicians and nurses in DLT situations., Methods: This prospective study at a German university hospital included n = 100 advanced cancer inpatients with DLT. We surveyed their respective physicians and nurses to assess MD in DLT using an adapted distress thermometer and an open-ended question to specify reasons of MD. We also collected data on the decision-making process from the perspective of the clinicians., Results: Physicians report MD in 67% (n = 51) and nurses in 74% (n = 67) of the cases. The MD level in nurses (mean 2.3; SD 2.3) is significantly higher (P = .005) than in physicians (mean 1.5; SD 1.4). Uncertainties concerning ethical aspects in DLT in a patient case are associated with MD in both physicians (P = .024) and nurses (P = .004). Involvement of nurses in DLT is the strongest predictor (P = .000) for MD as indicated by physicians. Nurses experience MD especially, if the patient has a low quality of life (P = .001)., Conclusions: Moral distress is experienced by both oncologists and nurses in DLT. Nurses report higher MD intensity compared with physicians although the ultimate responsibility for DLT lies with the physicians. Support for the challenging decisions may be provided through the implementation of an ethical guideline and enhanced interprofessional communication., (© 2018 John Wiley & Sons, Ltd.)

Background: Many patients with advanced cancer receive chemotherapy close to death and are referred too late to palliative or hospice care, and therefore die under therapy or in intensive care units. Oncologists still have difficulties in involving patients appropriately in decisions about limiting tumor-specific or life-prolonging treatment., Objective: The aim of this Ethics Policy for Advanced Care Planning and Limiting Treatment Study is to develop an ethical guideline for end-of-life decisions and to evaluate the impact of this guideline on clinical practice regarding the following target goals: reduction of decisional conflicts, improvement of documentation transparency and traceability, reduction of distress of the caregiver team, and better knowledge and consideration of patients' preferences., Methods: This is a protocol for a pre-post interventional study that analyzes the clinical practice on treatment limitation before and after the guideline implementation. An embedded researcher design with a mixed-method approach encompassing both qualitative and quantitative methods is used. The study consists of three stages: (1) the preinterventional phase, (2) the intervention (development and implementation of the guideline), and 3) the postinterventional phase (evaluation of the guideline's impact on clinical practice). We evaluate the process of decision-making related to limiting treatment from different perspectives of oncologists, nurses, and patients; comparing them to each other will allow us to develop the guideline based on the interests of all parties., Results: The first preintervention data of the project have already been published, which detailed a qualitative study with oncologists and oncology nurses (n=29), where different approaches to initiation of end-of-life discussions were ethically weighted. A framework for oncologists was elaborated, and the study favored an anticipatory approach of preparing patients for forgoing therapy throughout the course of disease. Another preimplementational study of current decision-making practice (n=567 patients documented) demonstrated that decisions to limit treatment preceded the death of many cancer patients (62/76, 82% of deceased patients). However, such decisions were usually made in the last week of life, which was relatively late., Conclusions: The intervention will be evaluated with respect to the following endpoints: better knowledge and consideration of patients' treatment wishes; reduction of decisional conflicts; improvement of documentation transparency and traceability; and reduction of the psychological and moral distress of a caregiver team., Registered Report Identifier: RR1-10.2196/9698., (©Katsiaryna Laryionava, Katja Mehlis, Elena Bierwirth, Friederike Mumm, Wolfgang Hiddemann, Pia Heußner, Eva C Winkler. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 15.06.2018.)

Background: Empirical research demonstrates that there is a tendency to administer tumor-directed therapy to patients with advanced cancer close to death, especially if they are young. The aim of this qualitative study was to understand oncologists' treatment decisions and oncology nurses' perception of these decisions in young adult patients and to investigate the extent to which young age was a factor in cancer treatment decisions., Materials and Methods: We conducted 29 face-to-face interviews with oncologists and oncology nurses at the Department of Hematology and Oncology at the University Hospital in Munich, Germany. The interviews were analyzed according to the grounded theory approach., Results: Oncologists and nurses reported that decisions about limiting cancer treatment with young adult patients are the most challenging and stressful in clinical practice. Apart from using young age as a proxy for patient's medical fitness, oncologists' decisions in favor of more aggressive treatment of younger patients were mainly guided by ethical reasons such as patient preferences and the perceptions of injustice associated with dying at a young age, as well as by psychological reasons, such as identification and emotional entanglement., Conclusion: "Struggling" together with the patient against the injustice of dying young for a longer lifetime is an important factor driving aggressive treatment in young adult patients. However, oncologists might run a risk of neglecting other ethical aspects, such as a principle of nonmaleficence, that might even result in life-shortening adverse events., Implications for Practice: This study identifies two ethical and one psychological reasons for patients' overtreatment: 1) patients' preference for further treatment; 2) oncologists' perception of un-fairness of dying young; and 3) identification and emotional entanglement with patient. These findings emphasize the need for oncologists' awareness of the reasons guiding their treatment decisions - a sole focus on patients' preferences and on the fighting against the unfairness of dying young might lead to neglecting obligations of non-maleficence. Self-reflection, the balance of empathy and professional distance as well as timely end of life discussions and involvement of psycho-oncologists are needed in the care of young cancer patients., Competing Interests: Disclosures of potential conflicts of interest may be found at the end of this article., (© AlphaMed Press 2017.)

Background  Decisions to limit treatment (DLT) are important in order to prevent overtreatment at the end of life. However, they are not always discussed with the patient in advance or sufficiently documented. In a study to improve DLT in patients with an advanced hematological/ oncological disease we examined how often DLT precede deaths and how early they are determined. Methods  In a period of 6 months, 567 patients with advanced hematological/ oncological neoplasias had been recruited for the cross-sectional study at the University hospital in Munich. Using a standardized registration form an embedded researcher documented which DLT were determined for the patients and which of them were implemented until death. Results  For 26 % (n = 147) of the 567 patients a DLT was determined. These DLT were mostly documented in writing from the beginning on (90 %; n = 132), 20 % (n = 30) were modified. The proportion of deceased patients with DLT was 82 % (n = 62 of 76 deceased). The median time between the initial determination of a DLT and the patient's death was 6 days at normal ward and 10.5 days at palliative ward. Compared to hematological patients, DLT were more frequently diagnosed in patients with an oncological disease (64 vs. 36 %) and the decisions were made slightly earlier (7 vs. 5 days before death). Conclusion  Our results show that DLT precede the death of many patients with a hematological/ oncological disease, but usually are made in the last week of life. This leads to the risk that the remaining few days to death are not sufficient for discussions with all parties involved and the planning of the end of life. These findings resulted in the development of an ethics policy for treatment limitation in cancer patients, which should support the concept of advance care planning. The project is funded by the German Cancer Aid., Competing Interests: Disclosure The authors report no conflicts of interest in this work., (© Georg Thieme Verlag KG Stuttgart · New York.)

Decisions to limit treatment are important in order to avoid overtreatment at the end of life. They proceed more than half of expected deaths in Europe and the US, but are not always communicated with the patient in advance. One reason for non-involvement is that conversations that prepare patients for end-of-life decisions and work out their preferences do not take place on a regular basis. At the same time there is growing evidence that such communication improves patients' quality of life, reduces anxiety and depression and allows patients to develop a realistic understanding of their situation - which in turn is a prerequisite for shared decision making about limiting treatment. In this paper we define "treatment limitation" and explain the medical ethics perspective. The main focus, however, is on the causes that hinder advanced care planning and conversations about limiting treatment in the care of patients with advanced disease. Finally the evidence for approaches to improve the situation is presented with concrete suggestions for solutions., (© Georg Thieme Verlag KG Stuttgart · New York.)

Background: Communication skills training has proven to be an effective means to enhance communication of health care professionals in oncology. These effects are well studied in standardized settings. The question of transferring these skills into clinical consultations remains open. We build up on a previous developed training concept consisting of a workshop and coaching. This training achieved a medium effect size in two studies with standardized patients. In the current study, we expanded and manualized the coaching concept, and we will evaluate effects of a varied number of coaching sessions on real clinical consultations. Our aim is to determine how much coaching oncologists need to transfer communication skills into clinical practice., Methods/design: Physicians of two German medical centers will participate in a workshop for communication skills and will be randomized to either a group with one coaching session or a group with four coaching sessions following the workshop. The participation is voluntary and the physicians will receive medical education points. Consultations held by the participating physicians with actual patients who gave their informed consent will be filmed at three time points. These consultations will be evaluated by blinded raters using a checklist based on the training content (primary outcome). Secondary outcomes will be the self-evaluated communication competence by physicians and an evaluation of the consultations by both physicians and patients., Discussion: We will evaluate our communication training concept on three levels - rater, physician and patient - and concentrate on the transfer of communication skills into real life situations. As we emphasize the external validity in this study design, limitations will be expected due to heterogeneity of data. With this study we aim to gain data on how to improve communication skills training that will result in better patient outcomes., Trial Registration: German Clinical Trials Register DRKS00004385 .

Background: Decision-making with patients with incurable cancer often requires trade-offs between quality and length of life. The 'Quality and Quantity Questionnaire' (QQ) is an English-language measure of patients' preference for length or quality of life. The aim of this study was to translate and validate this questionnaire., Materials and Methods: 1 new item was formulated to improve the 'Quality of life' scale. Construct validity including exploratory factor analysis, convergent and discriminant validity, and reliability was determined in n = 194 patients., Results: The acceptability of the questionnaire among patients was high. The item-non-response rate was very low (2.5-4%). The 2 QQ scales 'Quality of life' (QL) and 'Length of life' (LL) had good and acceptable internal consistency (Cronbach's = 0.71 for LL and 0.59 for QL). Convergent validity was shown by significant correlation of the QL subscale with the CCAT (Cancer Communication Assessment Tool) subscale 'Limitation of treatment' (r = 0.37, p < 0.01) and the LL scale with the CCAT subscale 'Continuing treatment' (r = 0.24, p = 0.00)., Conclusion: The German version of 'QQ' has satisfactory psychometric properties for measuring patients' preferences for LL or QL. It can be used in all research fields that should be informed by patients' preferences: shared decision-making, palliative care, and health services., (© 2014 S. Karger GmbH, Freiburg.)

Background: Owing to its neurotoxicity, allogeneic hematopoietic stem cell transplantation (HSCT) carries risks for cognitive impairment. In this multicenter study, we prospectively evaluated cognitive functioning and its medical and demographic correlates in patients undergoing allogeneic HSCT., Methods: A total of 102 patients were consecutively assessed prior to (T0 ), 100 ± 20 days (T1 ) after, and 12 ± 1 months (T2 ) after HSCT (61% men, 41% acute myeloid leukemia). A comprehensive neuropsychological test battery was applied to evaluate attention, memory, executive function, and fine motor function, summing up into 14 test scores., Results: Before and after HSCT, patients performed below test norms in up to 50% of the test scores. Patients were mostly impaired on word fluency (24%, T0 ), fine motor function, and verbal delayed recall (19% each, T2 ). Impairment on ≥ 1/5 cognitive domains occurred in 47% (T0 ) and 41% (T2 ) of the patients. Performance (mean z-scores) partially improved over time (i.e., visual span forward, verbal learning, and word fluency). However, from baseline to T2 , 16% of the patients showed reliable decline on ≥ 3/14 test scores (reliable change index method). For the majority of neuropsychological subtests, no associations with conditioning intensity, total body irradiation, graft-versus-host disease, cyclosporine treatment, and length of hospital stay were found. Age and premorbid intelligence level were consistently associated with cognition., Conclusions: Below average cognitive performance is common in this patient group. In addition, a subgroup shows reliable cognitive decline after allogeneic HSCT. Healthcare professionals should be aware of these treatment-related cognitive side effects., (Copyright © 2012 John Wiley & Sons, Ltd.)

The relationships between the psyche and cancer are manifold. Psycho-oncology focuses on the psychological adjustment to life-threatening illnesses. Crises are not unusual in health care, but the perception of cancer is totally different because the diagnosis of cancer often results in an irrational shock reaction in all parties involved. A diagnosis of cancer is much more negatively perceived than any other incurable disease, such as cardiopathy or neuropathy with a comparable or worse prognosis. During the shock of having received a diagnosis of cancer, there is no awareness that cancer can be cured. Improvement of quality of life, identification of psychological distress and prevention of mental disorders are the main tasks of psycho-oncology. Psycho-oncological services are not longer regarded a luxury, but are recognized by health care politicians as being important. However, the financing of services remains unclear.

Chronic graft-versus-host disease (cGVHD) associated morbidity and mortality remain major barriers for successful allogeneic hematopoietic stem cell transplantation (alloHSCT). Currently, no reliable measures are established to monitor cGVHD activity changes for use in clinical trials. The Human Activity Profile (HAP) patient self-report was proposed by the National Institutes of Health (NIH) cGVHD consensus project as an independent measure of patients' functional status that could also indirectly reflect improvement of cGVHD, but that has not been validated in an alloHSCT patient population. One hundred seventy-six patients (median age 44 years [range: 18-72 years] after alloHSCT were evaluated with a German translation of the HAP, the NIH criteria-based cGVHD activity assessment, the Lee cGVHD Symptom-Scale, FACT-BMT, SF36, Berlin Social Support Scale, 24-Item Adjective Measure (24-AM), Hospital Anxiety and Depression Scale, and the NCCN-Distress-Thermometer. Enrollment occurred a median of 286 (range: 85-4003) days after alloHSCT. Follow-up surveys were conducted at 1, 2, 3, 5, 8, and 12 months after the baseline survey. Although 117 patient had cGVHD at time of enrollment (mild n = 33, moderate n = 50, or severe n = 34), 59 patients were included into the study in the absence of cGVHD between days 85 and 395 after transplantation. The maximum activity score (MAS) and adjusted activity score (AAS) of the HAP correlated inversely with grading of cGVHD severity (mild, moderate, or severe) (r = -0.25 for MAS and -0.24 for AAS). Lung manifestations of cGVHD correlated with AAS (r = 0.17), but not with MAS. HAP scores correlated with subscales from other instruments measuring physical domains, especially the physical functioning scale of the SF36. Performance was improved by use of an HSCT-modified HAP scoring system that excluded activities prohibited within the first year after alloHSCT. No significant correlation of the HAP was found with personality, age, sex, symptom burden, or social functioning or social well-being. Moreover, the HAP displayed a higher sensitivity to change of cGVHD activity compared to the SF36 and the FACT-BMT. In addition, steroid myopathy correlated with both HAP scores, but not the SF36. The HAP is a simple and valid questionnaire for the evaluation of the physical activity in patients after alloHSCT, with the advantage of detecting changes in cGVHD status independently of other quality-of-life measures and with a superior sensitivity compared to the SF36., (Copyright © 2010 American Society for Blood and Marrow Transplantation. Published by Elsevier Inc. All rights reserved.)

Psycho-oncology -- as the diction suggests -- is a multidisciplinary sub-specialty of oncology concerned with the emotional responses of patients at all stages of the disease, their families and staff. Psycho-oncology does not assume the responsibility of cancer cure but attends to the psychological, social and behavioural variables that influence cancer prevention, risk and survival. The psycho-social research domains today contain the screening and management of psycho-social distress as well as experiences with specific psycho-oncological symptoms. Cancer-related fatigue, for example, disturbs patients' quality of life more often than pain. However, all too often doctors fail to pay enough attention to this unknown symptom.

According to the lay mind the psyche is somehow responsible for the cancer growth, at least to name one reason for the verdict of guilty. Scientifically this issue has no evidence, as well as there is no evidence that the psyche has an influence on neither survival time nor healing rates. Merely undisputed is the effect of the psychosocial stress of a life-threatening medical illness onto the quality of life of the patients and family members. This kind of stress is called "distress"in the American-speaking countries. The translation into German terms is still poorly defined and mainly concentrated to the psychiatric disorders (ICD-10) like depressions and anxiety disorders. Psycho-oncological research is currently interested besides others issues in the question of a suitable screening-method to identify patients in regard to their distress level, who would profit by a specific psycho-oncological intervention.

Patients and Results: One hundred and fifty-nine patients with chronic myelogenous leukemia have been treated in six studies during 10 years at Hannover Medical School University Center. The prognosis of 111 patients without pretreatment has been improved compared to conventional therapy with a median survival of 5.7 years. Cytogenetic remissions have been induced in all studies followed for a longer time. The most pronounced improvement of prognosis has been observed in these patients., Conclusions: Several conclusions can be drawn on the basis of the results on the different treatment concepts: 1. Patients with pretreatment have an unfavourable response to interferon. 2. There is a likely effect of the dose of Interferon alpha on the frequency of cytogenetic remissions. 3. The combination of Interferon alpha and interferon gamma has been toxic and ineffective in a pilot study. 4. The combination of interferon and cytosine arabinoside has a positive impact on the frequency of cytogenetic remissions. A continuous parallel application of both drugs seems to be most effective in this respect. An ongoing trial has been initiated to compare a fixed combination of Interferon alpha and cytosine arabinoside and with hydroxyurea respectively. Additionally the feasibility of autologous peripheral blood stem cell transplantation will be studied in patients with insufficient response to the interferon treatment.

Eleven adult patients with chronic neutropenia have been treated with recombinant human granulocyte colony-stimulating factor (G-CSF). Seven patients had idiopathic sporadic neutropenia, 2 idiopathic congenital neutropenia and 2 cyclic neutropenia. Treatment was started with 3 micrograms/kg s.c. daily and was modified according to response. All patients had a rapid increase of neutrophils. The cycle length shortened from 21 to 14 days in patients with congenital cyclic neutropenia. Doses required for maintenance ranged from 0.1 to 8 micrograms/kg. One patient with idiopathic sporadic neutropenia recovered after 151 days with an absolute neutrophil count (ANC) of > 2000/microliters and had no need for further treatment. The overall efficacy of the treatment was good with abrogation of severe infections. Treatment has been continuously given to a maximum of 4.5 years. No loss of efficacy was observed during long-term treatment. There was no evidence for lineage drain or stem cell exhaustion with prolonged treatment. Cytogenetic analyses in seven of eleven patients did not reveal the development of abnormal cell-clones. G-CSF is safe and efficient in long-term treatment of adult patients with chronic neutropenias.

The expression of CD41, CD42 and CD62 on platelets was determined in ten patients with and without G-CSF treatment. CD41 and CD42 is expressed in nearly 100% of the platelets without change after G-CSF treatment. The expression of CD62 on the platelets' surface is significantly enhanced by G-CSF indicating a depletion of the alpha-granules. No platelet aggregation was observed. The enhanced secretion of thrombocyte-specific proteins does not induce aggregation but may promote ADP-induced aggregation. Furthermore, the surface-bound and soluble CD62 binds specifically to macrophages and endothelial cells and is involved in the regulation of inflammatory processes. Thus indirect mechanisms may supplement direct effects of G-CSF after chemotherapy.