Katsiaryna Laryionava

What Keeps Oncologists From Addressing Palliative Care Early on With Incurable Cancer Patients? An Active Stance Seems Key

BACKGROUNDnSympathetic and frank communication about the terminal nature of advanced cancer is important to improve patients prognostic understanding and, thereby, to allow for adjustment of treatment intensity to realistic goals; however, decisions against aggressive treatments are often made only when death is imminent. This qualitative study explores the factors that hinder such communication and reconstructs how physicians and nurses in oncology perceive their roles in preparing patients for end-of-life (EOL) decisions.nnnMETHODSnQualitative in-depth interviews were conducted with physicians (n = 12) and nurses (n = 6) working at the Department of Hematology/Oncology at the university hospital in Munich, Germany. The data were analyzed using grounded theory methodology and discussed from a medical ethics perspective.nnnRESULTSnOncologists reported patients with unrealistic expectations to be a challenge for EOL communication that is especially prominent in comprehensive cancer centers. Oncologists responded to this challenge quite differently by either proactively trying to facilitate advanced care planning or passively leaving the initiative to address preferences for care at the EOL to the patient. A major impediment to the proactive approach was uncertainty about the right timing for EOL discussions and about the balancing the medical evidence against the physicians own subjective emotional involvement and the patients wishes.nnnCONCLUSIONnThese findings provide explanations of why EOL communication is often started rather late with cancer patients. For ethical reasons, a proactive stance should be promoted, and oncologists should take on the task of preparing patients for their last phase of life. To do this, more concrete guidance on when to initiate EOL communication is necessary to improve the quality of decision making for advanced cancer patients.

Cancer Patients' Preferences for Quantity or Quality of Life: German Translation and Validation of the Quality and Quantity Questionnaire

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 (Cronbachs = 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.

The second patient? Family members of cancer patients and their role in end-of-life decision making

BackgroundFamily members are important companions of severely ill patients with cancer. However, studies about the desirability and difficulties of integrating relatives in the decision-making process are rare in oncology. This qualitative study explores the family role in decisions to limit treatment near the end of life from the professionals’ point of view.MethodsQualitative in-depth interviews were conducted with oncologists (nxa0=u200912) and nurses (nxa0=u20096) working at the Department of Hematology/Oncology at the University Hospital in Munich, Germany. The data were analyzed using a descriptive qualitative methodology and discussed from a medical ethics perspective.ResultsFour major themes played a central role in the perception of the medical staff in regard to family members. (1) Family impact on patients’ treatment preferences. (2) Strong family wish for further treatment. (3) Emotional distress of the family related to the involvement in end-of-life decision-making. (4) Importance of knowing family structures.ConclusionsThe important role of the family members in patients’ disease process is recognized by oncologists and oncology nurses. However, this does not seem to lead to an early involvement of the family members. Developing and establishing a systematic assessment of family members’ needs and wishes in order to provide a specific-tailored support should become a priority for interdisciplinary clinical research in the near future.

High prevalence of moral distress reported by oncologists and oncology nurses in end-of-life decision making

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.

Development and Evaluation of an Ethical Guideline for Decisions to Limit Life-Prolonging Treatment in Advanced Cancer: Protocol for a Monocentric Mixed-Method Interventional Study

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

“Rather one more chemo than one less…”: Oncologists and Oncology Nurses’ Reasons for Aggressive Treatment of Young Adults with Advanced Cancer

BACKGROUNDnEmpirical 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.nnnMATERIALS AND METHODSnWe 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.nnnRESULTSnOncologists 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 patients 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.nnnCONCLUSIONnStruggling 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.nnnIMPLICATIONS FOR PRACTICEnThis 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.

Häufigkeit und Zeitpunkt von Entscheidungen gegen intensivmedizinische Maßnahmen und tumorspezifische Therapien in einer universitären Hämatologie und Onkologie

Backgroundu2002Decisions 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. Methodsu2002In 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. Resultsu2002For 26u200a% (nu200a=u200a147) of the 567 patients a DLT was determined. These DLT were mostly documented in writing from the beginning on (90u200a%; nu200a=u200a132), 20u200a% (nu200a=u200a30) were modified. The proportion of deceased patients with DLT was 82u200a% (nu200a=u200a62 of 76 deceased). The median time between the initial determination of a DLT and the patients death was 6xa0days 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. 36u200a%) and the decisions were made slightly earlier (7 vs. 5xa0days before death). Conclusionu2002Our 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.

The EPAL-project (Ethics policy for advanced care planning and limiting treatment)

T cell stimulation with different cytokines results in distinct phenotypes and cytotoxic activity of CD19-specific CART cells

Development and Validity of a Checklist Assessing the Risk of Bias of Randomized Trials, Observational Studies and Systematic Reviews Analyzing Drug Adverse Events

T cell stimulation with different cytokines results in distinct phenotypes and cytotoxic activity of CD19-specific CART cells

Rather one more chemo than one less ... Young adult's patients and chemotherapy in advanced cancer. A study of oncologists' views

T cell stimulation with different cytokines results in distinct phenotypes and cytotoxic activity of CD19-specific CART cells