Preoperative Counseling in Spinal Cord Stimulation: A Designated Driver in Implantable Pulse Generator-Related Inconveniences?

BACKGROUND: Spinal cord stimulation (SCS) has been reported to cause substantial pain relief and improved quality of life (QoL) in patients with persistent spinal pain syndrome (PSPS). Despite implantable pulse generator (IPG)-related inconveniences such as pain, shame, and discomfort affecting QoL and patient satisfaction, these are often neglected. Hence, the current study aims to determine the associations between patient satisfaction, IPG-related inconveniences, and preoperative counseling in a homogeneous group of patients with PSPS receiving SCS with IPG implantation in the gluteal or abdominal area. MATERIALS AND METHODS: Retrospective data on sample characteristics were gathered from the EPIC (electronic health record software) digital patient data base. Prospective data on patient satisfaction were obtained with a questionnaire that covered various topics such as shame, pain, disturbances in daily/intense activities, night rest and/or sleep, discomfort caused by clothing, and preoperative counseling. The exact location of the IPG and its scar were determined with photo analysis. Thereafter, the site of IPG placement was classified into separate quadrants within the gluteal and abdominal area. Patient satisfaction was defined as accepting the current location of the IPG without having the wish to undergo revision surgery. RESULTS: In total, 81 participants (50.9 ± 10 years) were included in this analysis, with patient satisfaction observed in 61 patients (75.3%). Among satisfied patients, more extensive preoperative counseling concerning IPG pain and discomfort was reported compared with patients who were not satisfied (p < 0.001). When comparing the two groups, significant differences were found in shame (8/81, 9.9%), IPG site pain (21/81, 25.9%), disturbance of activities (42/81, 51.9%), and clothing-related discomfort (42/81, 51.9%). CONCLUSIONS: On the basis of the current results, shared decision-making and comprehensive preoperative provision of information are recommended to optimize patient satisfaction regarding IPG pain, discomfort, and inconveniences. Although many patients experience these disadvantages despite successful SCS for pain related to PSPS, most of them accept this if they have received adequate preoperative information about expectations.

The Predicted Outcome of Spinal Cord Stimulation in Patients With a Psychopathological Disorder and Persistent Spinal Pain Syndrome Type 2: A Systematic Review From 2009 to 2021.

OBJECTIVES: Psychologic screening is often included as a mandatory component of evaluation of the impact of psychopathology disorders on the predicted outcome of spinal cord stimulation (SCS) for patients with chronic pain due to persistent spinal pain syndrome type 2 (PSPS type 2). The conclusion of such screenings can influence the decision to offer SCS therapy to a patient. However, evidence on the impact of psychopathology on SCS outcomes is still scarce. MATERIALS AND METHODS: To address this knowledge gap, we systematically reviewed the literature from 2009 to 2021 to explore the correlation between the presence of a psychopathological disorder and the predicted outcome of SCS in patients with PSPS type 2. The literature search was conducted using various online data bases with "failed back surgery syndrome," "psychopathology," and "spinal cord stimulation" used as essential keywords. The identified studies were organized in a Rayyan AI data base, and the quality was analyzed with the Critical Appraisal Skills Program tool. RESULTS: Our search generated the identification of 468 original articles, of which two prospective and four retrospective studies met our inclusion criteria. These studies reported pain relief, a reduction of symptoms of anxiety and depression, and an improvement in rumination on the Pain Catastrophizing Scale in patients with PSPS type 2 after SCS therapy. The studies also found contradictory outcomes measured using the Oswestry Disability Index, and in terms of the impact of psychopathological disorder on the clinical outcome and revision rate of the SCS system. CONCLUSION: In this systematic review, we found no convincing evidence that the presence of a psychopathological disorder affects the predicted outcome of SCS therapy in patients with PSPS type 2.

The effect of an integrated palliative care intervention on quality of life and acute healthcare use in patients with COPD: Results of the COMPASSION cluster randomized controlled trial.

BACKGROUND: COPD causes high morbidity and mortality, emphasizing the need for palliative care. AIM: To assess the effectiveness of palliative care in patients with COPD. DESIGN: Cluster randomized controlled trial (COMPASSION study; Netherlands Trial Register (NTR): NL7644, 07-04-2019). Healthcare providers within the intervention group were trained to implement palliative care components into routine COPD care. Patients completed questionnaires at baseline, after 3 and 6 months; medical records were assessed after 12 months. The primary outcome was quality of life (FACIT-Pal). Secondary outcomes were anxiety, depression, spiritual well-being, satisfaction with care, acute healthcare use, documentation of life-sustaining treatment preferences and place of death. Generalized linear mixed modelling was used for analyses. SETTING: Eight hospital regions in the Netherlands. PARTICIPANTS: Patients hospitalized for an acute exacerbation of COPD and positive ProPal-COPD score. RESULTS: Of 222 patients included, 106 responded to the questionnaire at 6 months. Thirty-six of 98 intervention patients (36.7%) received the intervention. Intention-to-treat-analysis showed no effect on the primary outcome (adjusted difference: 1.09; 95% confidence interval: -5.44 to 7.60). In the intervention group, fewer intensive care admissions for COPD took place (adjusted odds ratio: 0.21; 95% confidence interval: 0.03-0.81) and strong indications were found for fewer hospitalizations (adjusted incidence rate ratio: 0.69; 95% confidence interval: 0.46-1.03). CONCLUSIONS: We found no evidence that palliative care improves quality of life in patients with COPD. However, it can potentially reduce acute healthcare use. The consequences of the COVID-19 pandemic led to suboptimal implementation and insufficient power, and may have affected some of our findings.

Identifying, exploring and integrating the spiritual dimension in proactive care planning: A mixed methods evaluation of a communication training intervention for multidisciplinary palliative care teams.

BACKGROUND: Patients receiving palliative care value attention given to their spiritual needs. However, these needs often remain unexplored as healthcare professionals lack the skills to identify and explore them and to integrate this information into care plans. AIM: To evaluate the effects of an interactive communication training intervention for palliative care teams in order to identify and explore the spiritual dimension and integrate it in patients' care plans. DESIGN: A mixed methods pre-post study, including self-assessment questionnaires, evaluation of videos with simulated consultations (applied competence) and medical record review (implementation). SETTING/PARTICIPANTS: Three palliative care teams including nurses (N = 21), physicians (N = 14) and spiritual caregivers (N = 3). RESULTS: The questionnaires showed an improvement on 'Patient and family-centred communication' of the End-of-life professional caregiver survey (+0.37, p < 0.01; the 8-item S-EOLC (+0.54, p < 0.01) and regarding the Spiritual Care Competence Scale, on the three subscales used (+0.27, p < 0.01, +0.29, p < 0.01 and +0.32, p < 0.01). Video evaluations showed increased attention being paid to patient's aims and needs. The medical record review showed an increase in anticipation on the non-somatic dimension (OR: 2.2, 95% CI: 1.2-4.3, p < 0.05) and, using the Mount Vernon Cancer Network assessment tool, addressing spiritual issues (OR: 10.9, 95% CI: 3.7-39.5, p < 0.001). CONCLUSIONS: Our training intervention resulted in increased palliative care professionals' competence in identifying and exploring patients' spiritual issues, and their integration in multidimensional proactive palliative care plans. The intervention directly addresses patients' spiritual concerns and adds value to their palliative care plans.

An online international comparison of palliative care identification in primary care using the Surprise Question.

BACKGROUND: The Surprise Question ('Would I be surprised if this patient died within 12 months?') identifies patients in the last year of life. It is unclear if 'surprised' means the same for each clinician, and whether their responses are internally consistent. AIM: To determine the consistency with which the Surprise Question is used. DESIGN: A cross-sectional online study of participants located in Belgium, Germany, Italy, The Netherlands, Switzerland and UK. Participants completed 20 hypothetical patient summaries ('vignettes'). Primary outcome measure: continuous estimate of probability of death within 12 months (0% [certain survival]-100% [certain death]). A threshold (probability estimate above which Surprise Question responses were consistently 'no') and an inconsistency range (range of probability estimates where respondents vacillated between responses) were calculated. Univariable and multivariable linear regression explored differences in consistency. Trial registration: NCT03697213. SETTING/PARTICIPANTS: Registered General Practitioners (GPs). Of the 307 GPs who started the study, 250 completed 15 or more vignettes. RESULTS: Participants had a consistency threshold of 49.8% (SD 22.7) and inconsistency range of 17% (SD 22.4). Italy had a significantly higher threshold than other countries (p = 0.002). There was also a difference in threshold levels depending on age of clinician, for every yearly increase, participants had a higher threshold. There was no difference in inconsistency between countries (p = 0.53). CONCLUSIONS: There is variation between clinicians regarding the use of the Surprise Question. Over half of GPs were not internally consistent in their responses to the Surprise Question. Future research with standardised terms and real patients is warranted.

"When I am breathless now, I don't have the fear that's linked to it": a case series on the potential of EMDR to break the dyspnea-anxiety cycle in COPD.

BACKGROUND: Expectations can enhance the intensity and the neural processing of breathlessness. Previous breathlessness episodes may influence the perception of subsequent episodes because of psycho-traumatic consequences. In post-traumatic stress disorder, eye movement desensitization and reprocessing (EMDR) is the therapy of choice. AIMS AND OBJECTIVES: We explored the hypothesis that EMDR in patients with chronic obstructive pulmonary disease (COPD) and previous severe breathlessness episodes, improves breathlessness mastery by decreasing the anxiety component. METHODS: As we found no literature on previous research on this subject, we undertook a qualitative case series on four patients with COPD GOLD 4/D and refractory breathlessness who wished to undergo EMDR for psychotraumatic breathlessness episodes. Amongst others, we used the Chronic Respiratory Disease Questionnaire (CRQ) before and after EMDR, and semi-structured, face-to-face, in-depth interviews. RESULTS: All patients had between three and five EMDR sessions. On CRQ, subset mastery, three patients had a large improvement and one patient a moderate improvement. On subset emotional functioning, three patients showed a large improvement and one showed no change. All patients made a distinction between 'regular' breathlessness and breathlessness intertwined with anxiety. They all stated that the anxiety component of their breathlessness diminished or disappeared. All four would recommend EMDR for other COPD patients. CONCLUSION: There is ground for a randomized controlled clinical trial to test the effects of EMDR on breathlessness mastery in a subset of COPD patients with previous severe breathlessness episodes and high levels of anxiety.

Oncologist responses to advanced cancer patients' lived illness experiences and effects: an applied conversation analysis study.

BACKGROUND: An advanced cancer patient's life is often disturbed by fear of cancer recurrence, cancer progress, approaching suffering, and fear of dying. Consequently, the role of the medical oncologist is not only to provide best quality anti-cancer treatment, but also to address the impact of disease and treatment on a patient's life, the lived illness experience. We aimed to gain insights into whether and how medical oncologists working at an outpatient clinic identify and explore lived illness experiences raised by patients with advanced cancer, and how this influences patients' responses. METHODS: Conversation Analysis was applied to analyse 16 verbatim transcribed audio-recorded consultations. RESULTS: We identified 37 fragments in which patients expressed a lived experience from 11 of the 16 consultations. We found differing responses from different oncologists. Patients continued talking about their lived experiences if the listener produced a continuer such as humming or tried to capture the experience in their own words. In contrast, a response with optimistic talking or the presentation of medical evidence prevented patients from further unfolding the experience. In consultations in which the lived illness experience was most extensively unfolded, medical oncologists and patients could constantly see each other's facial expressions. CONCLUSIONS: When a patient with advanced cancer spontaneously introduces a lived illness experience, it helps to identify and explore it when the medical oncologist produces a continuer or tries to capture this experience in their own words. Our findings can be implemented in training sessions, followed by frequent reinforcement in daily care.

Evaluating quality of care at the end of life and setting best practice performance standards: a population-based observational study using linked routinely collected administrative databases.

BACKGROUND: A high percentage of people dying at home, and a low percentage of people being admitted to hospital and dying there are regarded as indicators of appropriate care at the end of life. However, performance standards for these quality indicators are often lacking, which makes it difficult to state whether an indicator score falls between the ranges of good or poor quality care. The aim of this study was to assess quality indicators concerning place of death and hospital care utilization in people with diseases relevant for palliative care, and to establish best practice performance standards based on indicator scores in 31 regions in the Netherlands. METHODS: A retrospective nationwide population-based observational study was conducted, using routinely collected administrative data concerning persons who died in 2017 in the Netherlands with underlying causes relevant for palliative care (N = 109,707). Data from four registries were linked for analysis. Scores on eight quality indicators concerning place of death and hospital care utilization were calculated, and compared across 31 healthcare insurance regions to establish relative benchmarks. RESULTS: On average, 36.4% of the study population died at home (range between regions 30.5%-42.6%) and 20.4% in hospital (range 16.6%-25.5%). Roughly half of the population who received hospital care at any time in the last year of life were found to (also) receive hospital care in the last month of life. In the last month, 32.0% of the study population were admitted to hospital (range 29.4-36.4%), 5.3% to an Intensive Care Unit (range 3.2-6.9%) and 23.9% visited an Emergency Department (range 21.0-27.4%). In the same time period, less than 1% of the study population was resuscitated in hospital or received tube or intravenous feeding in hospital. CONCLUSIONS: The variation between regions points towards opportunities for practice improvement. The best practice performance standards as set in this study serve as ambitious but attainable targets for those regions that currently do not meet the standards. Policymakers, healthcare providers and researchers can use the suggested performance standards to further analyze causes of variance between regions and develop and test interventions that can improve practice.

Implementation of a palliative care intervention for patients with COPD - a mixed methods process evaluation of the COMPASSION study.

OBJECTIVES: Little direction exists on how to effectively implement palliative care for patients with COPD. In the COMPASSION study, we developed, executed, and evaluated a multifaceted implementation strategy to improve the uptake of region-tailored palliative care intervention components into routine COPD care. We evaluated the implementation strategy and assessed the implementation process, barriers, and facilitators. METHODS: A mixed methods process evaluation was performed. Primary and secondary healthcare providers in four hospital regions in the Netherlands were trained. Patients identified during hospitalisation for an acute exacerbation received palliative care and were followed for a year. Various sources were used: process data, questionnaires including the End-of-life Professional Caregiver Survey (EPCS), medical records, monitoring meetings, and interviews. The Consolidated Framework of Implementation Research (CFIR) was used to categorize implementation determinants. RESULTS: The training sessions with roleplay were positively evaluated and increased professionals' self-efficacy in providing palliative care statistically significantly. Of 98 patients identified, 44 (44.9%) received one or more palliative care conversations at the outpatient clinic. Having those conversations was highly valued by healthcare providers because it led to clarity and peace of mind for the patient and higher job satisfaction. Coordination and continuity remained suboptimal. Most important barriers to implementation were time constraints, the COVID-19 pandemic, and barriers related to transmural and interdisciplinary collaboration. Facilitators were the systematic screening of patients for palliative care needs, adapting to the patient's readiness, conducting palliative care conversations with a pulmonologist and a COPD nurse together, and meeting regularly with a small team led by a dedicated implementation leader. CONCLUSIONS: Providing integrated palliative care for patients with COPD is highly valued by healthcare providers but remains challenging. Our findings will guide future implementation efforts. Future research should focus on how to optimize transmural and interdisciplinary collaboration. Trial registration The COMPASSION study is registered in the Netherlands Trial Register (NTR): NL7644. Registration date: 07/04/2019.

What to consider when implementing a tool for timely recognition of palliative care needs in heart failure: a context-based qualitative study.

BACKGROUND: Needs assessment tools can facilitate healthcare professionals in timely recognition of palliative care needs. Despite the increased attention for implementation of such tools, most studies provide little or no attention to the context of implementation. The aim of this study was to explore factors that contribute positively and negatively to timely screening of palliative care needs in advanced chronic heart failure. METHODS: Qualitative study using individual interviews and focus groups with healthcare professionals. The data were analysed using a deductive approach. The Consolidated Framework for Implementation Research was used to conceptualise the contextual factors. RESULTS: Twenty nine healthcare professionals with different backgrounds and working in heart failure care in the Southern and Eastern parts of the Netherlands participated. Several factors were perceived to play a role, such as perception and knowledge about palliative care, awareness of palliative care needs in advanced chronic heart failure, perceived difficulty when and how to start palliative care, limited acceptance to treatment boundaries in cardiology, limited communication and collaboration between healthcare professionals, and need for education and increased attention for palliative care in advanced chronic heart failure guidelines. CONCLUSIONS: This study clarified critical factors targeting patients, healthcare professionals, organisations to implement a needs assessment tool for timely recognition of palliative care needs in the context of advanced chronic heart failure. A multifaceted implementation strategy is needed which has attention for education, patient empowerment, interdisciplinary collaboration, identification of local champions, chronic heart failure specific guidelines and culture.

Filling the Gap: A Feasibility Study of a COPD-Specific Breathlessness Service.

Refractory breathlessness is a devastating symptom in chronic obstructive pulmonary disease (COPD). Symptom-focused breathlessness services, involving palliative care teams, offer individualized support but are not yet widely available for people with nonmalignant disease among which COPD. Our primary aim was to demonstrate the feasibility of setting up a breathlessness service specifically for COPD patients within a respiratory outpatient clinic. Our secondary aims were to assess how many sessions patients need to complete the intervention; to obtain an indication of effect size (on the Chronic Respiratory Questionnaire (CRQ), subset mastery domain); and to evaluate patient and professional satisfaction. We conducted a non-randomized single-center feasibility study. Participants had COPD and refractory breathlessness. During at least one session with a respiratory nurse and a pulmonologist, and one session with a physiotherapist, patients learned non-pharmacological interventions to manage breathlessness. Of 34 screened patients, 19 were included. All completed the intervention. A median of two clinical visits and two telephone calls were needed to complete the intervention. The mean improvement of 1.55 in CRQ, mastery domain, significantly exceeded the clinically important difference of 0.5. The service was rated as excellent by the eight patients who completed the survey. The health professional team gave positive feedback on the experience of delivering the intervention. Delivery of a breathlessness service for COPD outpatients with refractory breathlessness appears feasible, easy to implement in a respiratory outpatient clinic, and has the potential to be effective. A randomized controlled clinical trial is needed to test effectiveness and cost-effectiveness in this context.

Spinal Cord Stimulation in Failed Back Surgery Syndrome: An Integrative Review of Quantitative and Qualitative Studies.

BACKGROUND: Spinal cord stimulation (SCS) is an established therapy of failed back surgery syndrome (FBSS), although the effects on daily functioning, quality of life (QoL), and patients' expectations, experiences, and satisfaction remain elusive. The current integrative review aimed to summarize the overall effects of SCS in patients with FBSS on pain relief, health-related QoL, and daily activities. MATERIALS AND METHODS: PubMed, CINAHL, Embase, ClinicalTrials.gov, gray literature, and reference lists of relevant articles were searched for additional papers. All included studies were assessed for risk of bias using the Mixed Methods Appraisal Tool. Following the methods of Whittemore and Knafl, an integrative review and a meta-analysis were performed. RESULTS: In total, 16 articles were included; 11 articles presented quantitative outcomes, and five articles presented qualitative data. Lower back pain, leg pain, overall pain, Oswestry Disability Index, EuroQol Five Dimensions Health Questionnaire three-level/five-level, and the physical component score of Short Form Health Survey (SF-36) significantly improved during all follow-up moments. Only the mental component score of the SF-36 did not significantly improve, compared with baseline. Heterogeneity was diversely present among the studies. Patients' expectations and goals were disparate, although patients seemed to desire a return to their pre-FBSS state. Experiences with regard to the outcomes showed that patients largely recuperated after SCS, although limitations were still present. Patients also expressed inconvenience with regard to the trial period, implantation location, and recharging of the implantable pulse generator. CONCLUSIONS: SCS showed beneficial effects on different domains of life in patients with FBSS. The quantitative analyses suggest an overall improvement in most domains, although patients' experiences show that limitations in daily life and living with the SCS system persist. Multiple extensive preoperative counseling sessions and discussions with patients are deemed necessary to improve patient satisfaction and meet their expectations. Shared decision-making and provision of complete information are key factors for success.

The COVID-19 pandemic: A tipping point for advance care planning? Experiences of general practitioners.

BACKGROUND: In 2020, the COVID-19 pandemic caused an acute risk of deterioration and dying for many, and an urgent need to start advance care planning. AIM: To explore how general practitioners (GPs) experienced discussing values, goals and preferences with patients during COVID-19. DESIGN AND SETTING: Qualitative research in general practice. METHODS: Semi-structured interviews for which Dutch GPs were recruited via purposive sampling. Content analysis was used. RESULTS: Fifteen GPs were interviewed. Six themes were identified: (i) urge of advance care planning, (ii) the GP's perceived role in it, (iii) preparations for it, (iv) (proactively) discussing it, (v) essentials for good communication and (vi) advance care planning in the (near) future. Calls for proactively discussing advance care planning in the media and in COVID-guidelines caused awareness of it's importance. GPs envisaged an important role for themselves in initiating it, especially with patients at risk to deteriorate or die from COVID-19. Timing advance care planning appeared difficult but crucial. The recommended digital way of communication was considered problematic due to missing nonverbal communication and difficulties in involving relatives. It was noted that admission to the ICU, which was hardly discussed before the COVID-19 pandemic, should remain a topic during advance care planning. CONCLUSION: The COVID-19 pandemic brought advance care planning into a new light, GPs were more experienced with discussing it and patients were more aware of their frailty. Because of the nearing 'grey wave', advance care planning should remain top priority. Therefore, it should be central in GP and post-academic training.

Timely identification of patients in need of palliative care using the Double Surprise Question: A prospective study on outpatients with cancer.

BACKGROUND: The Surprise Question ("Would I be surprised if this patient were to die within the next 12 months?") is widely used to identify palliative patients, though with low predictive value. To improve timely identification of palliative care needs, we propose an additional Surprise Question ("Would I be surprised if this patient is still alive after 12 months?") if the original Surprise Question is answered with "no." The combination of the two questions is called the Double Surprise Question. AIM: To examine the prognostic accuracy of the Double Surprise Question in outpatients with cancer. DESIGN: A prospective study. PARTICIPANTS: Twelve medical oncologists completed the Double Surprise Question for 379 patients. RESULTS: In group 1 (original Surprise Question "yes": surprised if dead) 92.1% (176/191) of the patients were still alive after 1 year, in group 2a (original and additional Surprise Question "no": not surprised if dead and not surprised if alive) 60.0% (63/105), and in group 2b (original Surprise Question "no," additional Surprise Question "yes": surprised if alive) 26.5% (22/83) (p < 0.0001). The positive predictive value increased by using the Double Surprise Question; 74% (61/83) vs 55% (103/188). Anticipatory palliative care provision and Advance Care Planning items were most often documented in group 2b. CONCLUSIONS: The Double Surprise Question is a promising tool to more accurately identify outpatients with cancer at risk of dying within 1 year, and therefore, those in need of palliative care. Studies should reveal whether the implementation of the Double Surprise Question leads to more timely palliative care.

Effectiveness and implementation of palliative care interventions for patients with chronic obstructive pulmonary disease: A systematic review.

BACKGROUND: Although guidelines recommend palliative care for patients with chronic obstructive pulmonary disease, there is little evidence for the effectiveness of palliative care interventions for this patient group specifically. AIM: To describe the characteristics of palliative care interventions for patients with COPD and their informal caregivers and review the available evidence on effectiveness and implementation outcomes. DESIGN: Systematic review and narrative synthesis (PROSPERO CRD42017079962). DATA SOURCES: Seven databases were searched for articles reporting on multi-component palliative care interventions for study populations containing ⩾30% patients with COPD. Quantitative as well as qualitative and mixed-method studies were included. Intervention characteristics, effect outcomes, implementation outcomes and barriers and facilitators for successful implementation were extracted and synthesized qualitatively. RESULTS: Thirty-one articles reporting on twenty unique interventions were included. Only four interventions (20%) were evaluated in an adequately powered controlled trial. Most interventions comprised of longitudinal palliative care, including care coordination and comprehensive needs assessments. Results on effectiveness were mixed and inconclusive. The feasibility level varied and was context-dependent. Acceptability of the interventions was high; having someone to call for support and education about breathlessness were most valued characteristics. Most frequently named barriers were uncertainty about the timing of referral due to the unpredictable disease trajectory (referrers), time availability (providers) and accessibility (patients). CONCLUSION: Little high-quality evidence is yet available on the effectiveness and implementation of palliative care interventions for patients with COPD. There is a need for well-conducted effectiveness studies and adequate process evaluations using standardized methodologies to create higher-level evidence and inform successful implementation.

Tools to help healthcare professionals recognize palliative care needs in patients with advanced heart failure: A systematic review.

BACKGROUND: The delivery of palliative care interventions is not widely integrated in chronic heart failure care as the recognition of palliative care needs is perceived as difficult. Tools may facilitate healthcare professionals to identify patients with palliative care needs in advanced chronic heart failure. AIM: To identify tools to help healthcare professionals recognize palliative care needs in patients with advanced chronic heart failure. DESIGN: This systematic review was registered in the PROSPERO database (CRD42019131896). Evidence of tools' development, evaluation, feasibility, and implementation was sought and described. DATA SOURCES: Electronic searches to identify references of tools published until June 2019 were conducted in MEDLINE, CINAHL, and EMBASE. Hand-searching of references and citations was undertaken. Based on the identified tools, a second electronic search until September 2019 was performed to check whether all evidence about these tools in the context of chronic heart failure was included. RESULTS: Nineteen studies described a total of seven tools. The tools varied in purpose, intended user and properties. The tools have been validated to a limited extent in the context of chronic heart failure and palliative care. Different health care professionals applied the tools in various settings at different moments of the care process. Guidance and instruction about how to apply the tool revealed to be relevant but may be not enough for uptake. Spiritual care needs were perceived as difficult to assess. CONCLUSION: Seven tools were identified which showed different and limited levels of validity in the context of palliative care and chronic heart failure.

Life-sustaining treatment preferences in older patients when referred to the emergency department for acute geriatric assessment: a descriptive study in a Dutch hospital.

BACKGROUND: In many cases, life-sustaining treatment preferences are not timely discussed with older patients. Advance care planning (ACP) offers medical professionals an opportunity to discuss patients' preferences. We assessed how often these preferences were known when older patients were referred to the emergency department (ED) for an acute geriatric assessment. METHODS: We conducted a descriptive study on patients referred to the ED for an acute geriatric assessment in a Dutch hospital. Patients were referred by general practitioners (GPs), or in the case of nursing home residents, by elderly care physicians. The referring physician was asked if preferences regarding life-sustaining treatments were known. The primary outcome was the number of patients for whom preferences were known. Secondary outcomes included which preferences, and which variables predict known preferences. RESULTS: Between 2015 and 2017, 348 patients were included in our study. At least one preference regarding life-sustaining treatments was known at referral in 45.4% (158/348) cases. In these cases, cardiopulmonary resuscitation (CPR) policy was always included. Preferences regarding invasive ventilation policy and ICU admission were known in 17% (59/348) and 10.3% (36/348) of the cases respectively. Known preferences were more frequent in cases referred by the elderly care physician than the GP (P < 0.001). CONCLUSIONS: In less than half the patients, at least one preference regarding life-sustaining treatments was known at the time of referral to the ED for an acute geriatric assessment; in most cases it concerned CPR policy. We recommend optimizing ACP conversations in a non-acute setting to provide more appropriate, desired, and personalized care to older patients referred to the ED.

Euthanasia in advanced dementia; the view of the general practitioners in the Netherlands on a vignette case along the juridical and ethical dispute.

BACKGROUND: In the Netherlands, euthanasia has been regulated by law since 2002. In the past decade, a growing number of persons with dementia requested for euthanasia, and more requests were granted. A euthanasia request from a patient with advanced dementia (PWAD) can have a major impact on a general practitioner (GP). We aimed to get insights in the views of Dutch GPs on euthanasia concerning this patient group. METHODS: A postal survey was sent to 894 Dutch GPs. Questions were asked about a case vignette about a PWAD who was not able to confirm previous wishes anymore. Quantitative data were analyzed with descriptive statistics. RESULTS: Of the 894 GPs approached, 422 (47.3%) completed the survey. One hundred seventy-eight GPs (42.2%) did not agree with the statement that an Advance Euthanasia Directive (AED) can replace an oral request if communication with the patient concerned has become impossible. About half of the respondents (209; 49.5%) did not agree that the family can initiate a euthanasia trajectory, 95 GPs (22.5%) would accept such a family initiative and 110 GPs (26.1%) would under certain conditions. DISCUSSION: In case of a PWAD, when confirming previous wishes is not possible anymore, about half of the Dutch GPs would not accept an AED to replace verbal or non-verbal conformation nor consider performing euthanasia; a minority would. Our study shows that, probably due to the public debate and changed professional guidelines, conflicting views have arisen among Dutch GPs about interpretation of moral, ethical values considering AED and PWADs.

Making complex decisions in uncertain times: experiences of Dutch GPs as gatekeepers regarding hospital referrals during COVID-19-a qualitative study.

BACKGROUND: General practitioners often act as gatekeeper, authorizing patients' access to hospital care. This gatekeeping role became even more important during the current COVID-19 crisis as uncertainties regarding COVID-19 made estimating the desirability of hospital referrals (for outpatient or inpatient hospitalization) complex, both for COVID and non-COVID suspected patients. This study explored Dutch general practitioners' experiences and ethical dilemmas faced in decision making about hospital referrals in times of the COVID-19 pandemic. METHODS: Semi-structured interviews with Dutch general practitioners working in the Netherlands were conducted. Participants were recruited via purposive sampling. Thematic analysis was conducted using content coding. RESULTS: Fifteen interviews were conducted, identifying four themes: one overarching regarding (1) COVID-19 uncertainties, and three themes about experienced ethical dilemmas: (2) the patients' self-determination vs. the general practitioners' paternalism, (3) the general practitioners' duty of care vs. the general practitioners' autonomy rights, (4) the general practitioners' duty of care vs. adequate care provision. CONCLUSIONS: Lack of knowledge about COVID-19, risks to infect loved ones, scarcity of hospital beds and loneliness of patients during hospital admission were central in dilemmas experienced. When developing guidelines for future crises, this should be taken into account.

Experiences of bereaved family caregivers with shared decision making in palliative cancer treatment: a qualitative interview study.

BACKGROUND: Patients with incurable cancer face complex medical decisions. Their family caregivers play a prominent role in shared decision making processes, but we lack insights into their experiences. In this study, we explored how bereaved family caregivers experienced the shared decision making process. METHODS: We performed a qualitative interview study with in-depth interviews analysed with inductive content analysis. We used a purposive sample of bereaved family caregivers (n = 16) of patients with cancer treated in a tertiary university hospital in the Netherlands. RESULTS: Four themes were identified: 1. scenarios of decision making, 2. future death of the patient 3. factors influencing choices when making a treatment decision, and 4. preconditions for the decision making process. Most family caregivers deferred decisions to the patient or physician. Talking about the patient's future death was not preferred by all family caregivers. All family caregivers reported life prolongation as a significant motivator for treatment, while the quality of life was rarely mentioned. A respectful relationship, close involvement, and open communication with healthcare professionals in the palliative setting were valued by many interviewees. Family caregivers' experiences and needs seemed to be overlooked during medical encounters. CONCLUSIONS: Family caregivers of deceased patients with cancer mentioned life prolongation, and not quality of life, as the most important treatment aim. They highly valued interactions with the medical oncologist and being involved in the conversations. We advise medical oncologists to take more effort to involve the family caregiver, and more explicitly address quality of life in the consultations.