Experience of Time and Subjective Age When Facing a Limited Lifetime: The Case of Older Adults with Advanced Cancer.

OBJECTIVES: We addressed two questions: (1) Does advanced cancer in later life affect a person's awareness of time and their subjective age? (2) Are awareness of time and subjective age associated with distress, perceived quality of life, and depression? METHODS: We assessed patients suffering terminal cancer (OAC, n = 91) and older adults free of any life-threatening disease (OA, n = 89), all subjects being aged 50 years or older. RESULTS: Older adults with advanced cancer perceived time more strongly as being a finite resource and felt significantly older than OA controls. Feeling younger was meaningfully related with better quality of life and less distress. In the OA group, feeling younger was also associated to reduced depression. Perceiving time as a finite resource was related to higher quality of life in the OA group. DISCUSSION: Major indicators of an older person's awareness of time and subjective aging differ between those being confronted with advanced cancer versus controls.

Development and Evaluation of a Decision Aid to Support Patients' Participatory Decision-Making for Tumor-Specific and Palliative Therapy for Advanced Cancer: Protocol for a Pre-Post Study.

BACKGROUND: To support advanced cancer patients and their oncologists in therapeutic decisions, we aim to develop a decision aid (DA) in a multiphased, bicentric study. The DA aims to help patients to better understand risks and benefits of the available treatment options including the options of standard palliative care or cancer-specific treatment (ie, off-label drug use within an individual treatment plan). OBJECTIVE: This study protocol outlines the development and testing of the DA in a pre-post study targeting a heterogeneous population of advanced cancer patients. METHODS: In the first step, we will assess patients' information and decisional needs as well as the views of the health care providers regarding the content and implementation of the DA. Through a scoping review, we aim to analyze specific characteristics of the decision-making process and to specify the treatment options, outcomes, and probabilities. An interdisciplinary research group of experts will develop and review the DA. In the second step, testing of the DA (design and field testing) with patients and oncologists will be conducted. As a last step, we will run a pre-post design study with 70 doctor-patient encounters to assess improvements on the primary study outcome: patients' level of decisional conflict. In addition, the user acceptance of all involved parties will be tested. RESULTS: Interviews with cancer patients, oncologists, and health care providers (ie, nurses, nutritionists) as well as a literature review from phase I have been completed. The field testing is scheduled for April 2021 to August 2021, with the final revision scheduled for September 2021. The pre-post study of the DA and acceptance testing are scheduled to start in October 2021 and shall be finished in September 2022. CONCLUSIONS: A unique feature of this study is the development of a DA for patients with different types of advanced cancer, which covers a wide range of topics relevant for patients near the end of life such as forgoing cancer-specific therapy and switching to best supportive care. TRIAL REGISTRATION: ClinicalTrials.gov NCT04606238; https://clinicaltrials.gov/ct2/show/NCT04606238. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/24954.

Dealing with Family Conflicts in Decision-making in End-of-Life Care of Advanced Cancer Patients.

PURPOSE OF REVIEW: The family plays a significant role in end-of-life care and decision-making with advanced cancer patients. This non-systematic review aims to summarize the family role and possible emerging conflicts and problems related to family involvement in decisions with advanced cancer patients. RECENT FINDINGS: Four important domains were identified: (1) discordance between patients and caregivers' understanding of prognosis and goals of care; (2) internal family conflicts; (3) cultural differences regarding the role of the family in end-of life decision-making; (4) the burden on caregivers through caring for cancer patients. Based on the findings, we formulated some implications to consider for clinical practice. We suggest to involve the family in decision-making, to ascertain patients' wish for family involvement and if necessary, taking a mediator role between patients and their caregivers; to be aware of "invisible" family influence on patients' decisions; to assess systematically family burden and needs; to provide timely information, psychological support interventions and palliative care.

"Often Relatives are the Key [ ]" -Family Involvement in Treatment Decision Making in Patients with Advanced Cancer Near the End of Life.

BACKGROUND: Family communication has been increasingly recognized as an important factor in decision making near the end of life. However, the role of the family in decision making is less studied in oncology settings, where most patients are conscious and able to communicate almost until dying. The aim of this study was to explore oncologists' and nurses' perceptions of family involvement in decision making about forgoing cancer-specific treatment in patients with advanced cancer. MATERIALS AND METHODS: Qualitative semistructured interviews with 22 oncologists and 7 oncology nurses were analyzed according to the grounded theory approach. The results were discussed against the background of the clinical and ethical debate on family role near the end of life. RESULTS: We could identify two approaches shared by both oncologists and nurses toward family involvement. These approaches could be partly explained by different perception and definition of the concept of patients' autonomy: (a) a patient-focused approach in which a patient's independence in decision making was the highest priority for oncologists and (b) a mediator approach with a family focus in which oncologists and nurses assigned an active role to patients' family in decision making and strived for building consensus and resolving conflicts. CONCLUSION: The main challenge was to involve family, increasing their positive influences on the patient and avoiding a negative one. Thereby, the task of both oncologists and oncology nurses is to support a patient's family in understanding of a patient's incurable condition and to identify a patient's preference for therapy. IMPLICATIONS FOR PRACTICE: This study focused on oncologists' and oncology nurses' perceptions of family involvement in decision making about treatment limitation in patients with advanced cancer who are able to communicate in a hospital setting. Oncologists and oncology nurses should be aware of both positive aspects and challenges of family involvement. Positive aspects are patients' emotional support and support in understanding and managing the information regarding treatment decisions. Challenges are diverging family preferences with regard to treatment goals that might become a barrier to advanced care planning, a possible increased psychological burden for the family. Especially challenging is involving the family of a young patient because increased attention, more time investment, and detailed discussions are needed.

Late decisions about treatment limitation in patients with cancer: empirical analysis of end-of-life practices in a haematology and oncology unit at a German university hospital.

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.

Cancer Patients' Preferences for either Quality of Life or a Longer Life Determine Their Willingness to Talk about Forgoing Cancer-Specific Treatment.

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.

Patients' Preferences in Non-Curable Cancer Disease.

Eliciting and integrating patients' preferences in decision-making in palliative oncology is an important criterion for the quality of end-of-life care. It is an essential prerequisite in supporting the integrity of patients' decision-making process, enhancing patients' right to self-determination and facilitating patients' autonomy. In this review we summarize the data on: (1) patients' preference for a decisional model in advanced cancer, (2) patients' preferences for quality versus length of life and the enrollment of patients in early-phase clinical studies, and (3) preferences for caregiver involvement in decision-making. Timely assessment of patients' preferences enables advance care planning with respect to considering patients' values, discussing therapy goals and planning for patients' end-of-life care. It helps avoiding overtreatment near the end of life and giving care that is aligned to patients' wishes and family capacities.

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

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.

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.

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

BACKGROUND: Family 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. METHODS: Qualitative in-depth interviews were conducted with oncologists (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 a descriptive qualitative methodology and discussed from a medical ethics perspective. RESULTS: Four 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. CONCLUSIONS: The 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.

"Rather one more chemo than one less ": Oncologists and Oncology Nurses' Reasons for Aggressive Treatment of Young Adults with Advanced Cancer.

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.

[Frequency and Timing of Decisions to Limit Intensive Medical Care and Tumor-Specific Therapy in University Hematology and Oncology]. / Häufigkeit und Zeitpunkt von Entscheidungen gegen intensivmedizinische Maßnahmen und tumorspezifische Therapien in einer universitären Hämatologie und Onkologie.

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.

What keeps oncologists from addressing palliative care early on with incurable cancer patients? An active stance seems key.

BACKGROUND: Sympathetic 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. METHODS: Qualitative 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. RESULTS: Oncologists 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 physician's own subjective emotional involvement and the patient's wishes. CONCLUSION: These 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 (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.

Deus ex machina or e-slave? Public perception of healthcare robotics in the German print media.

OBJECTIVES: The news media plays a central role in providing information regarding new medical technologies and exerts an influence on their social perception, understanding, and assessments. This study, therefore, analyzes how healthcare robotics are portrayed in the German print news media. It examines whether the risks and opportunities of new medical technologies are presented in a balanced manner and investigates whether or not print media coverage of these technologies is affected by science-fiction discourse, in which robots appear mostly as a threat to humans. METHODS: Ten years of German print media coverage (2000-2010) have been studied by means of systematic, standardized content analysis. RESULTS: Reporting focuses predominantly on beneficial advancements in medical practice and the advantages of robotics for patients, medical staff, and society. The results show that the dominant relationship between robots and humans that is transmitted in print media in medical contexts is positive, with robots mostly portrayed as assistants, colleagues, or even friends. Only a small number of articles report ethical questions and risks. CONCLUSIONS: In contrast to science-fiction discourse, the German print media provides a positive picture of robotics to the lay public.

Public understanding of neural prosthetics in Germany: ethical, social, and cultural challenges.

Since the development of the first neural prosthesis, that is, the cochlear implant in 1957, neural prosthetics have been one of the highly promising, yet most challenging areas of medicine, while having become a clinically accepted form of invasiveness into the human body. Neural prosthetic devices, of which at least one part is inserted into the body, interact directly with the nervous system to restore or replace lost or damaged sensory, motor, or cognitive functions. This field is not homogenous and encompasses a variety of technologies, which are in various stages of development. Some devices are well established in clinical practice and have become routine, such as cochlear implants. By comparison, other technologies are in experimental phases and still need to be further developed to achieve the desired results.