BACKGROUND: Nursing homes are becoming more important for end-of-life care. Within the industrialised world, Germany is among the countries with the most end-of-life hospitalizations in nursing home residents. To improve end-of-life care, investigation in the status quo is required. The objective was to gain a better understanding of the perspectives of nursing home staff on the current situation of end-of-life care in Germany.
METHODS: A cross-sectional study was conducted as a postal survey among a random sample of 1069 German nursing homes in 2019. The survey was primarily addressed to nursing staff management. Data was analyzed using descriptive statistics. Staff was asked to rate different items regarding common practices and potential deficits of end-of-life care on a 5-point-Likert-scale. Estimations of the proportions of in-hospital deaths, residents with advance directives (AD), cases in which documented ADs were ignored, and most important measures for improvement of end-of-life care were requested.
RESULTS: 486 (45.5%) questionnaires were returned, mostly by nursing staff managers (64.7%) and nursing home directors (29.9%). 64.4% of the respondents rated end-of-life care rather good, the remainder rated it as rather bad. The prevalence of in-hospital death was estimated by the respondents at 31.5% (SD: 19.9). Approximately a third suggested that residents receive hospital treatments too frequently. Respondents estimated that 45.9% (SD: 21.6) of the residents held ADs and that 28.4% (SD: 26.8) of available ADs are not being considered. Increased staffing, better qualification, closer involvement of general practitioners and better availability of palliative care concepts were the most important measures for improvement.
CONCLUSIONS: Together with higher staffing, better availability and integration of palliative care concepts may well improve end-of-life care. Prerequisite for stronger ties between nursing home and palliative care is high-quality education of those involved in end-of-life care.
AIM: To describe general practitioners' (GPs) perspectives on end-of-life care of nursing home residents.
METHODS: We carried out a cross-sectional study. A questionnaire was sent to a random sample of 1121 GPs in the German federal states of Bremen and Lower Saxony in 2018. Data were compared between GPs with a qualification in palliative medicine and those without such qualifications, and multivariable logistic regression was performed.
RESULTS: Overall, 375 questionnaires were returned (response rate 34%). The majority of GPs (71%) agreed that nursing home residents are treated too often in hospitals at the end of life, and more than half rated end-of-life care in nursing homes as "rather poor" (54%). For both questions, GPs with a qualification in palliative medicine showed higher agreements. In the multivariable analysis, a prior qualification in palliative medicine was also strongly associated with rating end-of-life care as "rather poor" (OR 1.89, 95% CI 1.10-3.23). Respondents cited higher staffing ratios and better trained nursing staff as the most important measures to improve end-of-life care. Furthermore, it was estimated that just 37% of residents have an advance directive, with only one-third including valid information on end-of-life hospitalizations.
CONCLUSIONS: This study showed that GPs tend to be critical regarding end-of-life care in nursing homes. To improve end-of-life care, better training in palliative care for nursing staff and GPs might be warranted. In addition, advance care planning can help to ensure that residents' wishes are respected.
Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care teams. However, teams with specific expertise for children are not available all over the country. Families without this support need to use the hospital to get specialists' assistance.
Objective: To explore how parents of children and adolescents with life-limiting conditions think about the hospital as place of care.
Design: We conducted narrative interviews with parents and analyzed these by using a grounded theory approach.
Setting/Subjects: we interviewed 13 parents (4 fathers and 9 mothers) of 9 children with life-limiting conditions receiving or having received pediatric specialized outpatient palliative care (SOPPC) in Germany.
Results: Parents reported feelings of vulnerability, heteronomy, and disablement associated with hospital care and were afraid that their children's needs were not adequately addressed. These perceptions resulted from hospitals' standardized care structures and over- and undertreatment, a lack of continuity of care, hospital pathogens, a lack of a palliative mindset, insensitive hospital staff, the exclusion of parents from the treatment and parental care of their children, the hospital stay as a permanent state of emergency, and a waste of limited life time.
Conclusion: Pediatric hospital staff needs training in identifying and responding to palliative care needs. SOPPC structures should be expanded all over Germany to meet the needs of families of children with life-limiting conditions.
BACKGROUND: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant outcome domains for children with severe neurological impairment and their families.
AIM: The aim of this study was to identify meaningful outcome domains of pediatric palliative care for children with severe neurological impairment and their families.
DESIGN: A qualitative research design following a constructivist research paradigm was employed. Guided interviews were conducted with parents of children with life-limiting conditions and severe neurological impairment and professional caregivers. The data were analyzed using qualitative content analysis.
SETTING: Overall, 10 cooperating pediatric palliative care institutions across Germany (outpatient and inpatient settings) aided in the recruitment of eligible parents and professional caregivers. A total of 11 interviews with 14 parents and 17 interviews with 20 professional caregivers were conducted.
RESULTS: Six core outcome domains of pediatric palliative care for children with severe neurological impairment and their families were identified, namely (1) symptom control, (2) respite and support, (3) normalcy, (4) security, (5) empowerment, and (6) coping with the disease, each consisting of 1 to 13 individual aspects.
CONCLUSION: As for other diagnostic groups, symptom control is a relevant outcome domain for children with severe neurological impairment. However, other outcome domains which focus on the whole family and take into account the long disease trajectory, such as respite and support, security, empowerment, and coping with the disease, are also crucial.
Purpose: Close relationships can be strained by losses related to independence, autonomy, and separation after diagnosis of severe illness. The perceived quality of their close relationships affects individuals’ psychological adaptation in this context. We explored the level of perceived relatedness and its impact on demoralization and death acceptance. We further examined a possible protective effect of perceived relatedness on the association between tumor stage and death acceptance.
Methods: For this observational study, we consecutively recruited gynecology outpatients and general surgery inpatients at the University Cancer Center Hamburg-Eppendorf and oncological inpatients at the LungenClinic Grosshansdorf, Germany. At baseline, 307 patients (age M = 59.6, 69% female, 69% advanced cancer) participated. At 6- and 12-month (T3) follow-up, 213 and 153 patients responded, respectively. Patients completed self-report questionnaires including a modified version of the Posttraumatic Growth Inventory assessing perceived relatedness, the Life Attitude Profile-Revised assessing death acceptance, the Demoralization Scale, and the Memorial Symptom Assessment Scale assessing symptom burden. We calculated multiple linear regression analyses controlling for demographic and disease-related factors.
Results: Participants reported a stronger perceived relatedness at baseline (M = 3.04, SE = 0.03, possible range 0–4) than at T3 (M = 2.93, SE = 0.04; p = 0.02). Perceived relatedness significantly predicted lower demoralization at T3 but did not moderate the relationship between tumor stage and demoralization. Apart from male gender, none of the predictor or moderator variables had a significant impact on death acceptance at T3.
Conclusions: The strong impact of perceived relatedness on existential distress emphasizes the importance of strengthening interpersonal relationships within psychosocial interventions.
Some end-of-life aspects have become a significant political and social issue such as elderly care and euthanasia. But hardly anything is known about how the general public in Germany thinks about death and dying more generally. Therefore, we conducted a representative online survey (N = 997) regarding 21 end-of-life aspects. Differences between subgroups were analyzed by conducting analyses of variance and Tukey honestly significance difference post hoc tests and by performing t tests. The findings revealed that the general public is open to engaging with topics of death, dying, and grief and that death education might even be promoted for children. Most participants appraised dealing with the finitude of life as part of a good life, but few have contemplated death and dying themselves so far. Attitudes and perceptions were related to age, subjective health, religious denomination, and gender. The survey provides useful implications for community palliative care, death education, and communication with dying people.
Objective: The main purpose of palliative care is symptom relief. Frequently, the symptoms of patients requiring palliative care are the same as common symptoms of vitamin deficiency (e.g. pain, weakness, fatigue, depression). The study aim was to investigate whether patients in palliative care are vitamin deficient.
Method: This was a monocentre cross-sectional study. Patients attending the palliative care unit of a general hospital in Germany from October 2015 to April 2016 were examined for vitamin blood concentrations and symptoms. Data were analysed using univariate analysis and bivariate correlations.
Results: Data were available from 31 patients. Vitamin D3 deficiency (<62.5 nmol/L) affected 93.5% of patients, vitamin B6 deficiency (<4.1 ng/mL) 48.4%, vitamin C deficiency (<4.5 mg/L) 45.2%, vitamin B1 deficiency (<35 µg/L) 25.8% and vitamin B12 deficiency (<193 pg/mL) 12.9%. There was a significant negative correlation between vitamin B1 ranges and pain (r = -0.384) and depression (r = -0.439) symptoms.
Conclusion: All patients showed a deficiency in at least one of the measured vitamins; 68% had concurrent deficiencies in >1 vitamin. A follow-up study using validated questionnaires and a larger sample is needed to investigate the effects of targeted vitamin supplementation on quality of life and symptom burden.
BACKGROUND: From 2014 to 2017, the Palliative Medicine Working Group developed and published best practice recommendations for the integration of palliative care in Comprehensive Cancer Centers (CCCs) in Germany. To evaluate the implementation level of these recommendations in the CCCs an online survey was performed. Based on the results of this study, strategic tandem partnerships between CCCs should be built in order to foster further local development.
MATERIALS AND METHODS: Directors of all CCCs were contacted by e-mail between December 2017 and February 2018. At the time of the survey, 15 CCCs were funded by the German Cancer Aid. The level of implementation of the recommendations in individual CCCs was established using a transtheoretical model.
RESULTS: Between December 2017 and February 2018, all 15 contacted directors or their representatives of the CCCs took part in the survey. More than two thirds of the CCCs have a palliative service as well as a day clinic and palliative outpatient clinic. Regional networking and the provision of a palliative care unit were approved by all CCCs.
CONCLUSION: The publication of best practice recommendations was a milestone for the integration of palliative care in the CCCs. The majority of the German CCCs already fulfill essential organizational and structural requirements. There is a particular need for optimization in the provision of a basic qualification for general palliative care and emergency admission personnel.
IMPLICATIONS FOR PRACTICE: In 2017, the Palliative Medicine Working Group in the network of the German Comprehensive Cancer Centers (CCCs) published the best practice recommendations it had developed for the integration of palliative medicine in CCCs in Germany. In order to evaluate the level of implementation of the recommendations, an online survey of the CCC directors was established. The majority of German CCCs fulfil elementary organizational and structural requirements. However, there is still room for improvement in the provision of a basic qualification for general palliative care and emergency admission personnel.
Parkinson's disease (PD) is a progressive neurodegenerative movement disorder with an increased morbidity and mortality. People with PD (PwP) may suffer from decreased quality of life due to various motor and nonmotor symptoms. To a huge proportion, PwP have written an advance directive (AD); however, the content of these forms in regard to PD-specific complications is unclear. The aim of this study was to qualitatively and quantitatively analyze ADs of PwP in Germany. ADs of PwP were analyzed in a German sample of members of the German PD patient association. Participants completed a questionnaire about their AD and sent a copy of their AD to the study center for detailed analyses. ADs were qualitatively and quantitatively analyzed for general and PD-specific aspects and usefulness concerning treatment decisions. 82 PwP were included in the study, and in 76, an AD could be analyzed. Family members, notaries, lawyers, and general physicians mainly counseled writing of the ADs. 4 PwP consulted a neurologist to establish a specific AD for PD. In the analysis, ADs displayed a good specificity for general aspects, but they were unspecific to PD in the vast majority of cases. PwP should be encouraged to create an AD early in their disease and adapt it in the course of the disease. PD-specific aspects for an AD could be details in relation to dopaminergic therapies at the end of life, management of non-oral advanced therapies, neuropsychiatric symptoms, dementia, and swallowing disturbances.
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.