Background: Off-label-use is an indispensable element of palliative medicine. Up to one third of all drugs are prescribed beyond their licence. It is challenging to find the right balance between potential risks and benefits in the context of limited therapeutic options. To date, little is known how physicians deal with this challenge in daily practice.
Objectives: To evaluate (1) the awareness of German palliative medicine physicians of off-label-use, (2) the basis for decision-making for off-label-use, (3) the existence of guidelines for off-label prescribing and (4) practical problems arising in clinical practice.
Methods: Anonymous online survey among German palliative medicine physicians. Medical directors and consultants/other doctors were surveyed independently with two different questionnaires. The questionnaires included questions regarding documentation, legal and practical aspects of off-label drug use.
Results: In total, 578/605 emails sent were delivered. One hundred and forty-one questionnaires were fully completed, 8 partially. Response rate 23%. The majority of participants worked in specialist palliative home care and palliative care units (n = 134). One hundred and two (68%) participants were aged >50 years and 103 (69%) practised medicine >20 years. One hundred and twelve medical directors participated, 95 (85%) reported that no guidance on documentation of off-label-use was available. In total, 30/37 consultants and other doctors indicated experience as basis for their decision making on off-label-use. Twenty-four (75%) of the consultants and other doctors regularly used off-label-therapies with little or no evidence base. Uncertainties exist regarding drug safety, legal issues and the cost coverage.
Conclusions: More recommendations on the management of off-label drug use are necessary. Participants demand greater legal security including unbureaucratic prescribing.
BACKGROUND: At the end of life, about 85-90% of patients can be treated within primary palliative care (PC) provided by general practitioners (GPs). In Germany, there is no structured approach for the provision of PC by GPs including a systematic as well as timely identification of patients who might benefit from PC, yet. The project "Optimal care at the end of life" (OPAL) focusses on an improvement of primary PC for patients with both oncological and non-oncological chronic progressive diseases in their last phase of life provided by GPs and health care services.
METHODS: OPAL will take place in Hameln-Pyrmont, a rural region in Lower Saxony, Germany. Target groups are (a) GPs, (b) relatives of deceased patients and (c) health care providers. The study follows a three-phase approach in a mixed-methods and pre-post design. In phase I (baseline, t0) we explore the usual practice of providing PC for patients with chronic progressive diseases by GPs and the collaboration with other health care providers. In phase II (intervention) the Supportive and Palliative Care Indicators Tool (SPICT) for the timely identification of patients who might benefit from PC will be implemented and tested in general practices. Furthermore, a public campaign will be started to inform stakeholders, to connect health care providers and to train change agents. In phase III (follow-up, t1) we investigate the potential effect of the intervention to evaluate differences in the provision of PC by GPs and to convey factors for the implementation of SPICT in general practices.
DISCUSSION: The project OPAL is the first study to implement the SPICT-DE regionwide in general practices in Germany. The project OPAL may contribute to an overall optimisation of primary PC for patients in Germany by reducing GPs' uncertainty in initiating PC, by consolidating their skills and competencies in identifying patients who might benefit from PC, and by improving the cooperation between GPs and different health care stakeholders.
BACKGROUND: Gender disparities of specific symptoms and problems have frequently been observed in palliative care patients, but research rarely focused on the range of problems and needs affected by gender.
METHODS: We conducted semi-structured interviews with patients and healthcare professionals (HCPs) of a hospital-based palliative care unit to examine gender effects on patients' problems and needs based on systematically gathered qualitative data. Content analysis was used to identify emerging themes with data coded using MAXQDA.
RESULTS: Ten patients (5 female, 5 male) and 17 HCPs (12 female, 5 male) were interviewed. Seven categories of gender-specific problems and needs emerged: "physical symptoms, care and body image", "psychological symptoms and emotional response", "interaction with the palliative care team", "use of professional supportive measures", "activation of informal social networks", "decision-making", and "preservation of autonomy and identity". Both patients and HCPs felt that female patients adopt more expressive coping strategies, have stronger need for communication with and support of HCPs, and activate an extended social network for support and decision-making. Further, both groups thought that male patients mainly rely on social support from partners, have higher expectations to be cared for at home, and have higher need for preservation of autonomy.
CONCLUSION: Gender relevantly impacts patients' problems and needs during palliative care. Therefore, gender-sensitive palliative care that acknowledges the patient's individual situation and respective ramifications are required.
Background: One challenge in caring for cancer patients with incurable disease is the adequate identification of those in need for specialized palliative care (SPC). The study’s aim was to validate an easy to use phenomenological screening tool.
Methods: The German tool is based on the National Comprehensive Cancer Network (NCCN) Palliative Care guidelines and contains ten items in five domains that focus e.g. on diagnosis, functional status, complications, comorbidities, and palliative care relevant problems such as symptom management, distress, and support of family and team members. Sum score ranges from 0 to 14 (no need to great need). Assessment to identify SPC needs was done in university hospital wards between 1 and 08/2017 by health care professionals on admission of the patient if the disease was incurable and expected prognosis < 12 months. The Integrated Palliative Outcome Scale (IPOS, staff version), an outcome assessment instrument for palliative care that consists of ten items, served as external criterion; in sub samples inter-rater/test-retest were performed.
Results: Data from 208 patients with incurable disease and life expectancy < 12 months (54.8% female; average age 63.5 years, range 21–96) were assessed using the tool. The tool has good convergent validity; the correlation between the sum scores of IPOS and our tool showed a significant and substantial effect. The sum score was independent of the patient’s age, gender and primary diagnosis. Patients who already were in contact with SPC had significantly higher screening scores than patients without. With a cut point of = 5, 80.8% of the screened patients were in need for SPC. Cronbach’s alpha was a = .600. Rater agreement (inter-rater, test-retest) varied between single items. Correlation coefficients showed significant substantial effects.
Conclusions: This is the first validation of a screening procedure in German language identifying SPC needs of adult patients with advanced cancer and the first using filter questions as a pre-screening. Proxy assessment of SPC needs by physicians in cancer care settings is feasible and the suggested tool presents a valid instrument to trigger a PC consultation.
Termination of pregnancy after diagnosis of fetal anomaly (TOPFA) is a contested issue and stigma may negatively impact affected women's psychological reactions. This study examined the influence of perceived and internalized stigma on women's long-term adjustment to a TOPFA. One hundred forty-eight women whose TOPFA dated back 1 to 7 years responded to self-report questionnaires. The associations between perceived stigma at the time of the TOPFA, current internalized stigma and symptoms of grief, trauma and depression were modeled using multiple linear regression. The proportion of participants reporting scores above the cutoffs on the respective scale was 17.6% for grief, 18.9% for posttraumatic stress, and 10.8% for depression. After controlling for time since the TOPFA, pre-TOPFA mental health and obstetric variables, higher levels of current internalized stigma were related to higher levels of grief, trauma, and depression. Mediation analyses suggested that the effect of perceived stigma at the time of the TOPFA on symptoms of grief and trauma was mediated by current internalized stigma, but the cross-sectional design limited causal interpretation of results. Internalized stigma is associated with long-term psychological distress following a TOPFA. Perceived stigma at the time of the TOPFA may contribute to increased trauma and grief symptomatology, but results need to be validated in longitudinal studies. Health care providers and public initiatives should aim at reducing stigma among affected women.
Context: Internationally, a variety of reimbursement systems exists for palliative care (PC). In Germany, PC units (PCUs) may choose between per-diem rates and diagnosis-related groups (DRGs). Both systems are controversially discussed.
Objectives: To explore the experiences and views of German PCU clinicians and experts for PCU financing regarding per-diem rates and DRGs as reimbursement systems with a focus on (1) cost coverage, (2) strengths and weaknesses of both financing systems, and (3) options for further development of funding PCUs.
Design: Qualitative semistructured interviews with PCU clinicians and experts for PCU financing, analyzed by thematic analysis using the Framework approach.
Setting/Subjects/Measurements: Ten clinicians and 13 experts for financing were interviewed June-October 2015 on both reimbursement systems for PCU.
Results: Interviewees had divergent experiences with both reimbursement systems regarding cost coverage. A described strength of per-diem rates was the perceived possibility of individual care without direct financial pressure. The nationwide variation of per-diem rates and the lack of quality standards were named as weaknesses. DRGs were criticized for incentives perceived as perverse and inadequate representation of PC-specific procedures. However, the quality standards for PCUs required within the German DRG system were described as important strength. Suggestions for improvement of the funding system pointed toward a combination of per-diem rates with a grading according to disease severity/complexity of care.
Conclusions: Expert opinions suggest that neither current DRGs nor per-diem rates are ideal for funding of PCUs. Suggested improvements regarding adequate funding of PCUs resemble and supplement international developments.
BACKGROUND: Migrants seem to be underrepresented in palliative care in Germany. Access barriers and challenges in care remain unclear. We aimed to provide a comprehensive insight into palliative care for migrants, using expert interviews.
METHODS: Interviews with experts on palliative and general health care for migrants were audiotaped and transcribed. Data analysis followed a qualitative content analysis method for expert interviews proposed by Meuser and Nagel.
RESULTS: In total, 13 experts from various fields (palliative and hospice care, other care, research and training) were interviewed. Experts identified access barriers on the health care system and the patient level as well as the sociopolitical level. Services don't address migrants, who may use parallel structures. Patients may distrust the health care system, be oriented towards their home country and expect the family to care for them. In care, poor adaptation and inflexibility of health care services regarding needs of migrant patients because of scarce resources, patients' preferences which may contradict professionals' values, and communication both on the verbal and nonverbal level were identified as the main challenges. Conflicts between patients, families and professionals are at risk to be interpreted exclusively as cultural conflicts. Palliative care providers should use skilled interpreters instead of family interpreters or unskilled staff members, and focus on training cultural competence. Furthermore, intercultural teams could enhance palliative care provision for migrants.
CONCLUSIONS: Though needs and wishes of migrant patients are often found to be similar to those of non-migrant patients, there are migration-specific aspects that can influence care provision at the end of life. Migration should be regarded as a biographical experience that has a severe and ongoing impact on the life of an individual and their family. Language barriers have to be considered, especially regarding patients' right to informed decision making. The reimbursement of interpreters in health care remains an open question.
BACKGROUND: Lay family caregivers of patients receiving palliative care often confront stressful situations in the care of their loved ones. This is particularly true for families in the home-based palliative care settings, where the family caregivers are responsible for a substantial amount of the patient's care. Yet, to our knowledge, no study to date has examined the family caregivers' exposure to critical events and distress with home-based palliative care has been reported from Germany. Therefore, we attempt to assess family caregiver exposure to the dying patient's critical health events and relate that to the caregiver's own psychological distress to examine associations with general health within a home-based palliative care situation in Germany.
METHODS: A cross-sectional study was conducted among 106 family caregivers with home-based palliative care in the Federal State of North Rhine Westphalia, Germany. We administered the Stressful Caregiving Adult Reactions to Experiences of Dying (SCARED) Scale. Descriptive statistics and linear regression models relating general health (SF-36) were used to analyze the data.
RESULTS: The frequency of the caregiver's exposure, or witness of, critical health events of the patient ranged from 95.2% "pain/discomfort" to 20.8% "family caregiver thought patient was dead". The highest distress scores assessing fear and helpfulness were associated with "family caregiver felt patient had enough'" and "family caregiver thought patient was dead". Linear regression analyses revealed significant inverse associations between SCARED critical health event exposure frequency (beta=.408, p=.025) and total score (beta=.377, p=.007) with general health in family caregivers.
CONCLUSIONS: Family caregivers with home-based palliative care in Germany frequently experience exposure to a large number of critical health events in caring for their family members who are terminally ill. These exposures are associated with the family caregiver's degree of fear and helplessness and are associated with their worse general health. Thus the SCARED Scale, which is brief and easy to administer, appears able to identify these potentially upsetting critical health events among family caregivers of palliative care patients receiving care at home. Because it identified commonly encountered critical events in these patients and related them to adverse general health of family caregivers, the SCARED may add to clinically useful screens to identify family caregivers who may be struggling.
Background: Few measures capture the complex symptoms and concerns of those receiving palliative care.
Aim: To validate the Integrated Palliative care Outcome Scale, a measure underpinned by extensive psychometric development, by evaluating its validity, reliability and responsiveness to change.
Design: Concurrent, cross-cultural validation study of the Integrated Palliative care Outcome Scale – both (1) patient self-report and (2) staff proxy-report versions. We tested construct validity (factor analysis, known-group comparisons, and correlational analysis), reliability (internal consistency, agreement, and test–retest reliability), and responsiveness (through longitudinal evaluation of change).
Setting/participants: In all, 376 adults receiving palliative care, and 161 clinicians, from a range of settings in the United Kingdom and Germany
Results: We confirm a three-factor structure (Physical Symptoms, Emotional Symptoms and Communication/Practical Issues). Integrated Palliative care Outcome Scale shows strong ability to distinguish between clinically relevant groups; total Integrated Palliative care Outcome Scale and Integrated Palliative care Outcome Scale subscale scores were higher – reflecting more problems – in those patients with ‘unstable’ or ‘deteriorating’ versus ‘stable’ Phase of Illness (F = 15.1, p < 0.001). Good convergent and discriminant validity to hypothesised items and subscales of the Edmonton Symptom Assessment System and Functional Assessment of Cancer Therapy–General is demonstrated. The Integrated Palliative care Outcome Scale shows good internal consistency (a = 0.77) and acceptable to good test–retest reliability (60% of items kw > 0.60). Longitudinal validity in form of responsiveness to change is good.
Conclusion: The Integrated Palliative care Outcome Scale is a valid and reliable outcome measure, both in patient self-report and staff proxy-report versions. It can assess and monitor symptoms and concerns in advanced illness, determine the impact of healthcare interventions, and demonstrate quality of care. This represents a major step forward internationally for palliative care outcome measurement.
Background: Moral distress is a frequent phenomenon in end-of-life care. It occurs when one knows the morally correct response to an ethically challenging situation, but cannot act because of internal or external constraints. Medical students-having a perceived low level in the hospital hierarchy-may be particularly vulnerable to moral distress.
Objective: To assess the frequency and intensity of medical students' moral distress occurring in end-of-life care.
Design: We developed a questionnaire describing 10 potentially morally distressing scenarios in end-of-life care.
Setting: The questionnaire was distributed to all fourth-year students of a German medical school.
Measurements: We asked students (1) if they had ever witnessed the described scenarios and (2) to rate the extent (numeric rating scale 0-4) of moral distress for each situation.
Results: Of 340 students, 217 (64%) completed the survey. On average, students had experienced 2.51 morally distressing situations (standard deviation = ±2.23). The majority of students (N = 163, 75%) had experienced at least one morally distressing situation. Providing futile care with the basic intention to make money was the item with the highest levels of experienced distress (2.88 ± 1.05), witnessed by 54 (25%) participants. Twenty-five students (12%) reported that they had thought about dropping out of medical school or choosing a nonclinical specialty because of moral distress.
Conclusions: Medical students experience moral distress regularly and most frequently in scenarios of futile care. This may be an underestimated factor for medical school attrition. Interventions should identify the sources of moral distress and empower students to address their moral concerns.
BACKGROUND: In Germany, practice patterns of conservative renal care (CRC), dialysis withdrawal (DW), and concomitant palliative care in patients who choose these options are unknown.
METHOD: A survey was designed including 13 structured and one open questions on the management and frequency of CRC and DW, local palliative care structure, and fundamentals of the decision-making process, and addressed to the head physicians of all renal centers (n = 193) of a non-profit renal care provider (KfH - Kuratorium für Dialyse und Nierentransplantation, Neu-Isenburg, Germany).
RESULTS: Response rate was 62.2% (n = 122 centers) comprising 14,197 prevalent dialysis patients and 159,652 renal outpatients. Two-thirds of the respondents were men (85% in the age group between 45 and 64 years). Mean time of experience in renal medicine was 22.2 years in men, 20.8 years in women. 94% of all centers provided CRC with a different frequency and proportion of patients (mean 8.4% of the center population, median 5%, range 0-50%). Mean proportion of DW was 2.85% per year (median 2%, range 1-15%). Physicians and center features were not significantly associated with utilization of CRC or DW. Palliative care management varied including local palliative teams, support by general physicians, or by the renal team itself. Hospice care was only established in patients undergoing CRC. Fundamentals of the decision-making process were the desire of the patient (90% in CRC, 67% in DW). Patients undergoing CRC changed their opinion towards treatment modality "frequently" in 18% of the cases, "occasionally" in 73%. Physicians' decisions were mostly driven by presumed fatal prognosis and poor physical or mental conditions of the individual patient. Different barriers to provide palliative care for the renal population like lack of education in palliative medicine, shortness of staff, lack of financial resources, and local palliative care structures were reported.
CONCLUSION: Compared to international numbers, in Germany, proportion of CRC and DW reported by non-profit renal centers is in the lower range. Center practice of palliative care management varies and is driven by availability of local palliative care resources and presumably by attitudes of the renal teams. Quality of palliative care and the decision-making process need further evaluation.
BACKGROUND: The number of old patients suffering from colorectal cancer rises. In clinical trials, old patients are underrepresented, and chemotherapy is significantly less often performed in elderly patients. We analyzed the impact of elder age for palliative chemotherapy in patients suffering from metastatic colorectal cancer, according to therapeutic drugs used, intensity of treatment performed, and therapeutic results.
MATERIALS AND METHODS: We analyzed consecutive patients with metastatic colorectal cancer treated in palliative intention in our department. Assessed data included age (> 75 years), sex, comorbidity, site of primary tumor, k-ras-status, site and amount of metastasis, number and kind of chemotherapeutic agents used, number of consecutive therapy lines performed, dose intensity, toxicity, time between start and end of palliative chemotherapy, and overall survival. Prognostic variables were tested in uni- and multivariate analysis.
RESULTS: Ninety-seven patients (69 < 75, 18 > 75 years) were included. Age groups were well balanced according to site of primary tumor, k-ras-mutational status, localization, and number of metastatic sites. Cardial and renal comorbidity was more frequent in elderly patients. The median number of chemotherapeutic drugs used and lines of therapy performed did not differ between age groups, except of oxaliplatin, which was significantly less often used in old patients. Median survival did not differ between age groups (23.4 vs. 23.5 months). In multivariate analysis, only left-sided primary tumor and more than 3 lines of therapy performed were prognostic positive variables.
CONCLUSION: Old patients can profit from palliative chemotherapy to the same extent as younger ones.
OBJECTIVE: To describe psycho-oncological care structures and processes in German breast cancer centres from the perspective of the centre administration.
METHODS: The findings are based on a postal survey of a representative random sample of surgical sites of certified breast cancer centres in Germany. Data were collected in 2013 and 2014. The questionnaire included questions about infrastructure, patient information standards, psycho-oncological services and aspects of organisational culture. Data analyses included frequencies, means and bivariate relationships.
RESULTS: The return rate was 88.3% (53 hospital sites). Psycho-oncological care is provided by permanent employees in 87%. The average number of full-time-equivalent employees (FTE) is 1.23. Most breast cancer centres engage the occupational group of psycho-oncologists for psycho-oncological care (90%), followed by the medical service (80%) and breast care nurses (78%) (multiple answers were possible). The correlation coefficient between FTEs and surgical treatments per year is not significant (r=0.292, p=0.051). Hospitals are screening every inpatient for the need of psycho-oncological support in 76% of all sites. Frequently used screening instruments are distress thermometer (19%), clinical interview (13%) and basic psycho-oncological documentation (11%).
CONCLUSION: Our data provide insights into the self-reported structural and procedural quality of psycho-oncological care in German breast cancer centres. Further research should examine patient and caregiver perspective on the psycho-oncological services provided by breast cancer centres.
PURPOSE: The diagnosis of a terminal disease bears existential challenges, which activate the attachment system. Attachment insecurity, as well as existential resources, such as spiritual well-being, influences patients' extent of psychological distress. Knowledge about the interrelation of these constructs is limited. Based on current research, we assume spiritual well-being to mediate the association of attachment insecurity and psychological distress.
METHODS: We obtained data from the baseline measurement of a randomized controlled trial in advanced cancer patients. Patients were sampled from the University Medical Centers of Hamburg and Leipzig, Germany. Main outcome measures included the Patient Health Questionnaire (PHQ-9), the Death and Dying Distress Scale (DADDS), the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp), and the Experience in Close Relationships Scale (ECR-M16) for assessing attachment insecurity. We tested the mediation hypothesis with two regression analyses using bootstrapping procedure.
RESULTS: A total of 190 patients were included. Spiritual well-being mediated the association of attachment insecurity and depression (R2 = 11%), as well as death anxiety (R2 = 15%), in fearful-avoidant attached patients. Neither dismissingly nor preoccupied attached patients differ in terms of spiritual well-being and psychological distress in comparison with secure attached patients.
CONCLUSION: Spiritual well-being plays a relevant role in advanced cancer patient's mental health through mediating the association of attachment and psychological distress. Developing a better understanding of the interdependency of the constructs of spiritual well-being and attachment can help to develop individually tailored advanced cancer care programs and psychotherapeutic interventions.
To individually plan end-of-life care, open communication about a person's preferences and attitudes toward the end of life can facilitate dignity and quality of life in patients and relatives. To improve communication, structured guiding tools might be used as door openers. However, most tools focus on care preferences and decisions without assessing the person's underlying attitudes in detail. This study aims to get insights into specific requirements and conditions for communication about the end of life in various end-of-life care settings. Four focus groups were conducted with volunteers and professionals from nursing and psychosocial care (16 females, 2 males) working in hospice and palliative care and long-term care settings in Germany. A semistructured interview guideline on experiences and aspects associated with end-of-life conversations was used. Interviews were audiotaped, transcribed verbatim, and analyzed by a content analytic approach. Having end-of-life discussions primarily depended on a pleasant atmosphere, trusting bonds between conversation partners, and professional attitudes of staff members. Nursing home staff felt obligated to initiate conversations, but some reported insecurities doing so. Starting "early," including relatives, and having continuous discussions seemed beneficial for end-of-life conversations. Implementing conversations into existing care structures and using low-threshold impulses to start conversations were helpful. Individualized approaches should be preferred. Each staff member can be a partner in detailed conversations about end-of-life attitudes, but some felt unprepared doing so. Further skill training concerning end-of-life discussions is needed. Communication might be facilitated by open-format tools using low-threshold impulses when conditions of the care setting are considered.
While feelings of disgust and repulsion are experienced and accepted as part of care practices of nurses who work in palliative care, they are often silenced. Working alongside two palliative care nurses in a hospice setting, we engaged in a narrative inquiry to inquire into their experiences of disgust. The study took place in a palliative care setting in a large urban city in Germany. We understand care practices as actions that follow a logic of care. According to a logic of care, actions are situated within a social context, given by specific relationships including power, and individual needs. Various aspects of disgust are visible in the experiences of the participants and highlighted in the narrative threads of disgust and silence, disgust and protection, and disgust and boundaries. Embedded in the experience of disgust of nurses working in palliative care, we see that there are borderlands of care that challenge who we are and are becoming. Opening discussion about disgust in nursing makes visible the complexity of care.
BACKGROUND: A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%-85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However, structured Perinatal Palliative Care programs are missing in many European countries. In Germany, parents have the right to free psychosocial support from pregnancy counseling services after the prenatal diagnosis of a life-limiting disease.
AIM: We aimed to investigate whether German professional pregnancy counselors perceive the need for structured Perinatal Palliative Care and if so, how it should be conceived.
DESIGN: This is a qualitative interview study with purposeful sampling. The interviews were analyzed with the coding method of Saldaña.
SETTING/PARTICIPANTS: A total of 10 professionals from three different pregnancy counseling services participated in the study.
RESULTS: The main topics raised by the professionals were as follows: (1) counseling and parental support during the decision-making process; (2) fragmented or missing support infrastructure for parents; and (3) challenges, hesitations, and barriers, particularly from the different stakeholders, regarding a Perinatal Palliative Care framework. They highlighted the importance of the integration of Perinatal Palliative Care in existing structures, a multi-professional approach, continuous coordination of care and education for all healthcare providers involved.
CONCLUSION: A structured Perinatal Palliative Care program is considered as necessary by the pregnancy counselors. Future research should focus on (1) needs reported by concerned parents; (2) attitude and role of all healthcare providers involved; (3) strategies to include stakeholders in the development of Perinatal Palliative Care networks; and (4) outcome parameters for evaluation of Perinatal Palliative Care frameworks.
OBJECTIVE: To assess changes in attitudes of neonatologists regarding the care of extremely preterm infants and parental involvement over the last 20 years.
STUDY DESIGN: Internet-based survey (2016) involving 170 tertiary neonatal intensive care units in Austria, Switzerland, and Germany using the European Project on Parents' Information and Ethical Decision Making in Neonatal Intensive Care Units questionnaire (German edition) with minor modifications to the original survey from 1996 to 1997.
RESULTS: The 2016 survey included 104 respondents (52.5% response rate). In 2016, significantly more neonatologists reported having ever withheld intensive care treatment (99% vs 69%) and withdrawn mechanical ventilation (96% vs 61%) or life-saving drugs (99% vs 79%), compared with neonatologists surveyed in 1996-1997. Fewer considered limiting intensive care as a slippery slope possibly leading to abuse (18% vs 48%). In the situation of a deteriorating clinical condition despite all treatment, significantly more neonatologists would ask parental opinion about continuation of intensive care (49% vs 18%). In 2016, 21% of German neonatologists would resuscitate a hypothetical infant at the limits of viability, even against parental wishes.
CONCLUSIONS: Withholding or withdrawing intensive care for extremely preterm infants at the limits of viability with parental involvement has become more acceptable than it was 20 years ago. However, resuscitating extremely preterm infants against parental wishes remains an option for up to one-fifth of the responding neonatologists in this survey.
OBJECTIVE: Death acceptance may indicate positive adaptation in cancer patients. Little is known about what characterizes patients with different levels of death acceptance or its impact on psychological distress. We aimed to broaden the understanding of death acceptance by exploring associated demographic, medical and psychological characteristics.
METHODS: At baseline, we studied 307 mixed cancer patients attending the University Cancer Center Hamburg and a specialized lung cancer center (age M=59.6, 69% female, 69% advanced cancer). At one-year follow-up, 153 patients participated. We assessed death acceptance using the validated Life Attitude Profile-Revised. Patients further completed the Memorial Symptom Assessment Scale, the Demoralization Scale, the Patient Health Questionnaire, and the Generalized Anxiety Disorder Questionnaire. Statistical analyses included multinomial and hierarchical regression analyses.
RESULTS: At baseline, mean death acceptance was 4.33 (SD=1.3, range 1-7). There was no change to follow-up (p=.26). When all variables were entered simultaneously, patients who experienced high death acceptance were more likely to be older (OR=1.04, 95%CI 1.01-1.07), male (OR=3.59, 95%CI 1.35-9.56), widowed (OR=3.24, 95%CI 1.01-10.41), and diagnosed with stage IV (OR=2.44, 95%CI 1.27-4.71). They were less likely to be diagnosed with lung cancer (OR=.20, 95%CI .07-.58) and their death acceptance was lower with every month since diagnosis (OR=.99, 95%CI.98-.99). High death acceptance predicted lower demoralization and anxiety at follow-up, but not depression.
CONCLUSIONS: High death acceptance was adaptive. It predicted lower existential distress and anxiety after one year. Advanced cancer did not preclude death acceptance, supporting the elaboration of death-related concerns in psychosocial interventions.
Objective: The prevalence of depression as well as adjustment and anxiety disorders is high in advanced cancer patients, and research exploring intraindividual factors leading to high psychological distress is underrepresented. Cancer patients' feelings about security and trust in their healthcare providers have a significant influence on how they deal with their disease. The perception of social support is affected by patients' attachment styles and influences their reactions to feelings of dependency and loss of control. We therefore aimed to explore attachment and its association with psychological distress in patients with advanced cancer.
Method: We obtained data from the baseline measurements of a randomized controlled trial in advanced cancer patients. Patients were sampled from the university medical centers of Hamburg and Leipzig, Germany. The main outcome measures included the Patient Health Questionnaire, the Death and Dying Distress Scale, the Memorial Symptom Assessment Scale, and the Experience in Close Relationships Scale for assessing attachment insecurity.
Results: A total of 162 patients were included. We found that 64% of patients were insecurely attached (fearful-avoidant 31%, dismissing 17%, and preoccupied 16%). A dismissing attachment style was associated with more physical symptoms but did not predict psychological distress. A fearful-avoidant attachment style significantly predicted higher death anxiety and depression, whereas preoccupied attachment predicted higher death anxiety only. Overall, insecure attachment contributed to the prediction of depression (10%) and death anxiety (14%).
Significance of results: The concept of attachment plays a relevant role in advanced cancer patients' mental health. Healthcare providers can benefit from knowledge of advanced cancer patients' attachment styles and how they relate to specific mental distress. Developing a better understanding of patients' reactions to feelings of dependency and distressing emotions can help us to develop individually tailored advanced cancer care programs and psychotherapeutic interventions.