Palliative care consultations in primary care: a cross-sectional survey among Dutch general practitioners.

BACKGROUND: Expert consultation supports general practitioners (GPs) in delivering adequate palliative homecare. Insight into consultation practices from a GP's perspective is needed in order to shape consultation services to their wishes and needs. AIM: To explore palliative care consultation practices from a GP's perspective. DESIGN AND SETTING: Cross-sectional web-based survey among all GPs (n=235) in the region of Nijmegen, the Netherlands. METHODS: Our questionnaire contained questions about the delivery of palliative care by GPs, their consultation practices and satisfaction with current services. Questions consisted mainly of 5-point Likert scales. We transformed these scales into numerical values to calculate mean scores. Linear mixed models for repeated measurements were used to study differences in scores. RESULTS: GPs most often consulted informal caregivers (mean score 3.6) or fellow GPs (mean score 3.3). Physical problems were discussed the most (mean score 3.5), while social and existential issues were discussed least (mean score 1.9 for both). In their choice of a particular consultation service, GPs considered the quality of the provided advice to be the most important factor. GPs were satisfied with current consultation services, with fellow GPs receiving the highest satisfaction scores (mean score 4.6). Finally, when recalling their last palliative patient, most GPs started requesting consultation during this patient's last month of life. CONCLUSIONS: Next to informal caregivers, GPs preferably seek advice from fellow GPs. Physical issues receive much attention during consultations; however, other vital aspects of palliative care seem to remain relatively neglected, such as social and existential issues and a proactive care approach.

The effect of weekly specialist palliative care teleconsultations in patients with advanced cancer -a randomized clinical trial.

BACKGROUND: Teleconsultation seems to be a promising intervention for providing palliative care to home-dwelling patients; however, its effect on clinically relevant outcome measures remains largely unexplored. Therefore, the purpose of this study was to determine whether weekly teleconsultations from a hospital-based specialist palliative care consultation team (SPCT) improved patient-experienced symptom burden compared to "care as usual". Secondary objectives were to determine the effects of these teleconsultations on unmet palliative care needs, continuity of care, hospital admissions, satisfaction with teleconsultations, and the burden experienced by informal caregivers. METHODS: Seventy-four home-dwelling patients diagnosed with advanced cancer were recruited from outpatient clinics of a tertiary university hospital and from regional home care organizations between May 2011 and January 2015. Participants were randomized to receive weekly, prescheduled teleconsultations with an SPCT-member (intervention group), or to receive "care as usual" (control group), for a period of 12 weeks. The primary outcome of this study was: patient-experienced symptom burden indicated by the following: (1) Total Distress Score (defined as the sum of all nine subscales of the Edmonton Symptom Assessment System) and (2) the Hospital Anxiety and Depression Scale. Mixed models were used to test for differences between the two groups. RESULTS: The Total Distress Score became significantly higher in the intervention group than in the control group, reaching significance at week 12 (adjusted difference at week 12: 6.90 points, 95% CI, 0.17 to 13.63; P = 0.04). The adjusted anxiety scores were higher in the intervention group than in the control group (estimate effect: 1.40; 95% CI, 0.14 to 2.55; P = 0.03). No difference was found between the groups in adjusted depression scores (estimate effect: 0.30; 95% CI, -1.39 to 1.99; P = 0.73) or in secondary outcome measures. CONCLUSIONS: Adding weekly teleconsultations to usual palliative care leads to worse reported symptom scores among home-dwelling patients with advanced cancer. Possible explanations for these findings include excess attention on symptoms and (potential) suffering, the supply-driven care model for teleconsultations used in this trial, and the already high level of specialist palliative care provided to the control group in this study. TRIAL REGISTRATION: "The Netherlands National Trial Register", NTR2817 , prospectively registered: March 21, 2011.

Level of Discomfort Decreases After the Administration of Continuous Palliative Sedation: A Prospective Multicenter Study in Hospices and Palliative Care Units.

CONTEXT: A gold standard or validated tool for monitoring the level of discomfort during continuous palliative sedation (CPS) is lacking. Therefore, little is known about the course of discomfort in sedated patients, the efficacy of CPS, and the determinants of discomfort during CPS. OBJECTIVES: To identify the course of discomfort in patients receiving CPS. METHODS: A prospective observational multicenter study in nine hospices and palliative care units was performed. The Discomfort Scale-Dementia of Alzheimer Type (DS-DAT) was independently assessed for monitoring of patient discomfort during CPS. The DS-DAT scores range from 0 (no observed discomfort) to a maximum of 27 (high level of observed discomfort). Using a mixed model, the mean group score of discomfort between four predefined time frames of CPS was compared, correcting for confounding patient characteristics. RESULTS: A total of 130 patients were sedated, and the DS-DAT was completed in 106 patients at least once. The median duration of the sedation in these 106 patients was 25.5 hours (range 2-161). The mean score of the DS-DAT in the phase before sedation was 12.16 (95% CI 9.83-14.50) and decreased significantly to 8.06 (95% CI 5.53-10.58) in the titration phase of sedation. The mean score of the DS-DAT in the final phase of sedation was 7.42 (95% CI 4.90-9.94). CONCLUSION: This study shows that CPS is associated with a decrease in the level of discomfort within an acceptable time frame, although in some sedated patients higher levels of discomfort in the last hours of life occurred. Although the DS-DAT seems to be of value for monitoring the level of discomfort during CPS, the results of this study should be interpreted within the constraints of the limitations, and further research on the psychometric properties of this tool is needed before the DS-DAT can be used in clinical practice.

Patient-Related Determinants of the Administration of Continuous Palliative Sedation in Hospices and Palliative Care Units: A Prospective, Multicenter, Observational Study.

CONTEXT: Knowledge of determinants that are associated with the administration of continuous palliative sedation (CPS) helps physicians identify patients who are at risk of developing refractory symptoms, thereby enabling proactive care planning. OBJECTIVES: This study aims to explore which patient-related factors at admission are associated with receiving CPS later in the terminal phase of life. METHODS: A prospective multicenter observational study was performed in six Dutch hospices and three nursing home-based palliative care units. The association between patient-related variables at admission (age, gender, diagnosis, use of opioids or psycholeptics, number of medications, Karnofsky Performance Status scale score, Edmonton Symptom Assessment System distress score, and Glasgow Coma Scale score) and the administration of CPS at the end of life was analyzed. RESULTS: A total of 467 patients died during the study period, of whom 130 received CPS. In univariate analysis, statistically significant differences were noted between the sedated and nonsedated patients with respect to younger age (P = 0.009), malignancy as a diagnosis (P = 0.05), higher Karnofsky Performance Status score (P = 0.03), the use of opioids (P < 0.001), the use of psycholeptics (P = 0.003), and higher Edmonton Symptom Assessment System distress score (P = 0.05). Multivariate logistic regression analysis showed that only the use of opioids at admission (odds ratio 1.90; 95% confidence interval 1.18-3.05) was significantly associated with the administration of CPS. CONCLUSION: Physicians should be aware that patients who use opioids at admission have an increased risk for the administration of CPS at the end of life. In this group of patients, a comprehensive personalized care plan starting at admission is mandatory to try to prevent the development of refractory symptoms. Further research is recommended, to identify other determinants of the administration of CPS and to investigate which early interventions will be effective to prevent the need for CPS in patients at high risk.

The Practice of Continuous Palliative Sedation in Long-Term Care for Frail Patients with Existential Suffering.

Some guidelines and recommendations identify existential suffering as a potential refractory symptom for which continuous palliative sedation (CPS) can be administered under certain conditions. However, there has been little research on the characteristics of patients with existential suffering treated with CPS and the degree to which the preconditions are fulfilled. The aim of this study was to provide insight into this specific indication for CPS. Questionnaires were sent to nursing home physicians in The Netherlands, who described 314 patients. Existential suffering was a refractory symptom in 83 of the patients. For most of the patients with refractory existential suffering, other refractory symptoms were also reported, and life expectancy was seven days or less; informed consent for initiating CPS had been obtained in all cases. Consultation and intermittent sedation before the start of CPS were far less frequently reported than one would expect based on the guidelines. Multivariate analysis showed that being male, having previously requested euthanasia, having a nervous system disease, or having an other diagnosis were positively correlated with the administration of CPS for existential suffering. We conclude that more attention should be paid to the suggested preconditions and to the presence of existential suffering in male patients or patients with a nervous system disease.

Addressing Palliative Sedation during Expert Consultation: A Descriptive Analysis of the Practice of Dutch Palliative Care Consultation Teams.

MAIN OBJECTIVE: Since palliative sedation is considered a complex intervention, consultation teams are increasingly established to support general practice. This study aims to offer insight into the frequency and characteristics of expert consultations regarding palliative sedation. METHODS: We performed a retrospective analysis of a longitudinal database. This database contained all patient-related consultations by Dutch Palliative Care Consultation teams, that were requested between 2004 and 2011. We described the frequency and characteristics of these consultations, in particular of the subgroup of consultations in which palliative sedation was addressed (i.e. PSa consultations). We used multivariate regression analysis to explore consultation characteristics associated with a higher likelihood of PSa consultations. MAIN RESULTS AND THEIR SIGNIFICANCE: Of the 44,443 initial consultations, most were requested by general practitioners (73%) and most concerned patients with cancer (86%). Palliative sedation was addressed in 18.1% of all consultations. Palliative sedation was relatively more often discussed during consultations for patients with a neurologic disease (OR 1.79; 95% CI: 1.51-2.12) or COPD (OR 1.39; 95% CI: 1.15-1.69) than for patients with cancer. We observed a higher likelihood of PSa consultations if the following topics were also addressed during consultation: dyspnoea (OR 1.30; 95% CI: 1.22-1.40), agitation/delirium (OR 1.57; 95% CI: 1.47-1.68), exhaustion (OR 2.89; 95% CI: 2.61-3.20), euthanasia-related questions (OR 2.65; 95% CI: 2.37-2.96) or existential issues (OR 1.55; 95% CI: 1.31-1.83). CONCLUSION: In conclusion, PSa consultations accounted for almost one-fifth of all expert consultations and were associated with several case-related characteristics. These characteristics may help clinicians in identifying patients at risk for a more complex disease trajectory at the end of life.

Determinants of the administration of continuous palliative sedation: a systematic review.

BACKGROUND: Little is known about the determining factors related to the administration of continuous palliative sedation. Knowledge of these determinants may assist physicians in identifying patients who are at high risk of developing refractory symptoms, enable physicians to inform patients, and optimize close monitoring. OBJECTIVE: The aim of this systematic review was to identify determinants of the administration of continuous palliative sedation. DESIGN: A systematic review of PubMed, EMBASE, and CINAHL was performed to identify English, Dutch, and German language papers published from January 1990 through April 2011. Inclusion was based on the following criteria: patient-based research on continuous palliative sedation, studies investigating determinants of palliative sedation and/or comparison between sedated and nonsedated cohorts, and studies using multivariate analyses and of fair to good or good methodological quality. RESULTS: In total, eight papers were reviewed. The following nine factors were found to be associated with the administration of continuous palliative sedation: younger age, male sex, having cancer, feelings of hopelessness, dying in a hospital, living in a Dutch speaking community setting, very nonreligious or extremely nonreligious physicians, physicians working in "other hospital" specialties, and physicians in favor of assisted death. CONCLUSIONS: Given the variation in study designs and the limitations of the included studies, the outcomes should be interpreted carefully. Further research is needed, particularly regarding factors that can be influenced and that may alter the course of a patient's symptoms and the patient's eventual need for palliative sedation.

The practice of continuous palliative sedation in elderly patients: a nationwide explorative study among Dutch nursing home physicians.

OBJECTIVES: To study the practice of continuous palliative sedation (CPS) by Dutch nursing home physicians in 2007. DESIGN: A structured retrospective questionnaire. SETTING: Nationwide nursing home physician study in the Netherlands. PARTICIPANTS: One thousand two hundred fifty-four nursing home physicians received a questionnaire concerning their last case of CPS in 2007; 54% (n=675) responded. MEASUREMENTS: Characteristics of CPS and requests for euthanasia were measured. RESULTS: Three hundred sixteen patients were described. The majority had cancer or dementia. The most-reported refractory symptoms were pain (52%), anxiety (44%), exhaustion (44%), dyspnea (40%), delirium (24%), loss of dignity (18%), and existential distress (16%). In 98% of cases, CPS was aimed at symptom relief. Of patients with cancer, 17% had previously requested euthanasia. The mean starting dose of midazolam was 31 mg every 24 hours (range 0-240 mg/24 h), and the mean end dose was 48 mg every 24 hours (range 0-480 mg/24 h). CONCLUSION: In addition to physical symptoms, anxiety, exhaustion, loss of dignity, and existential distress are often mentioned as refractory symptoms in the decision to start CPS by nursing home physicians. Furthermore, close to one in five patients with cancer had made a previous request for euthanasia. The dosage range of midazolam in this study fits the recommendations of the Dutch national guideline on palliative sedation, although international studies show smaller dosage ranges. Finally, prospective research about the acceptability and assessment of nonphysical symptoms as indications for CPS is recommended.

When cancer symptoms cannot be controlled: the role of palliative sedation.

PURPOSE OF REVIEW: Palliative sedation, the intentional lowering of consciousness for refractory and unbearable distress, has been much discussed during the last decade. In recent years, much research has been published about this subject that will be discussed in this review. The review concentrates on: a brief overview of the main developments during the last decade, an exploration of current debate regarding ethical dilemmas, the development of clinical guidelines, and the application of palliative sedation. RECENT FINDINGS: Main findings are that palliative sedation is mostly described in retrospective studies and that the terminology palliative sedation in now common in the majority of the studies. In addition, life-shortening effects for palliative sedation are scarcely reported, although not absent. A number of guidelines have been developed and published, although systematic implementation needs more attention. Consequently, palliative sedation has become more clearly positioned as a medical treatment, to be distinguished from active life shortening. SUMMARY: Caregivers should apply palliative sedation proportionally, guided by the symptoms of the patient without striving for deep coma and without motives for life shortening. Clinical and multidisciplinary assessment of refractory symptoms is recommended as is patient monitoring during sedation. Future research should concentrate on proportional sedation rather than continuous deep sedation exclusively, preferably in a prospective design.

Changed patterns in Dutch palliative sedation practices after the introduction of a national guideline.

BACKGROUND: Continuous sedation, contrary to euthanasia, has been increasingly accepted among medical professionals worldwide. In the Netherlands, a national guideline for continuous palliative sedation has been developed to contribute to the quality of palliative sedation practice. The present follow-up study investigated whether the practice of continuous sedation has changed after the introduction of this guideline. METHODS: This study compared the practice of continuous sedation before and after the introduction of the guideline on December 7, 2005. A baseline measurement was performed between February 1, 2003, and May 1, 2005, with an enrollment of 492 physicians (medical specialists, general practitioners, and nursing home physicians). From January 1 to June 30, 2007, after the introduction of a national guideline for palliative sedation, a follow-up study was performed with the respondents of the baseline study. Physicians were asked to report on their last case of deep and continuous sedation in the past 12 months. RESULTS: This study reports the results of the follow-up study and compares them to the results of the baseline study. The response rate was 69.3% (n = 341). Of these physicians, 160 reported a last case of continuous sedation in both the baseline and the follow-up studies. Physicians reported a significant increase in patient involvement in decision making, from 72.3% to 82.2%. Pain remained the most often reported reason to start sedation, whereas exhaustion as a reason for sedation increased. The use of benzodiazepines increased from 69.9% to 90.4%. In the first and second measurements, symptom-directed treatment during sedation was applied in 56% to 58% of the cases. In the second period, there was more often an explicit decision to not give artificial hydration during sedation (78.8% vs 56.3%). Of the physicians, 34.2% were convinced that sedation shortened the life of the patient because of dehydration. CONCLUSIONS: After the introduction of the guideline, physicians reported that changes in palliative sedation practice conform to the recommendations of this guideline. For example, benzodiazepines were used for sedation more frequently than before and patient involvement in the decision-making process improved. Possible effects of dehydration and the large variation in symptom-directed treatment during sedation deserve careful attention.

Dealing with delicate issues in continuous deep sedation. Varying practices among Dutch medical specialists, general practitioners, and nursing home physicians.

BACKGROUND: This article examines delicate issues in continuous deep sedation (CDS) from the perspectives of different types of physicians. The following sensitive issues involved in CDS were investigated: artificial hydration, sedation for nonphysical discomfort, the relationship between CDS and euthanasia, and patient involvement in decision making for CDS. METHODS: A structured retrospective questionnaire concerning the most recent case of CDS during the past 12 months was sent to a sample of medical specialists (n = 727), general practitioners (n = 626), and nursing home physicians (n = 111). RESULTS: Response rates were 26.4% for medical specialists, 37.4% for general practitioners, and 59.5% for nursing home physicians. Indications for CDS differed among the types of physicians. General practitioners (25.0%) were most often confronted with a patient request for euthanasia before starting CDS compared with medical specialists (8.9%) and nursing home physicians (6.5%). A decision to forgo artificial hydration in CDS was more often made by nursing home physicians (91.3%) compared with medical specialists (53.7%) and general practitioners (51.2%). Shorter survival was found for patients sedated for nonphysical discomfort (vs other patients) by general practitioners. Among all patients, 74.5% were involved in decision making before the start of CDS. CONCLUSIONS: The present study demonstrates notable differences in CDS practice among various types of physicians. To what extent this is related to different patient populations or to different expertise requires further investigation. The use of CDS for nonphysical discomfort calls for critical examination to avoid ambiguous practice.

Palliative sedation until death: an approach from Kant's ethics of virtue.

This paper is concerned with the moral justification for palliative sedation until death. Palliative sedation involves the intentional lowering of consciousness for the relief of untreatable symptoms. The paper focuses on the moral problems surrounding the intentional lowering of consciousness until death itself, rather than possible adjacent life-shortening effects. Starting from a Kantian perspective on virtue, it is shown that continuous deep sedation until death (CDS) does not conflict with the perfect duty of moral self-preservation because CDS does not destroy capacities for agency. In addition, it is argued that CDS can frustrate the imperfect duty of self-cultivation by reducing consciousness permanently. Nevertheless, there are cases where CDS is morally acceptable, namely, cases where the agent has already permanently lost the possibility for free action in advance of sedation--for example, due to excruciating and ongoing pain. Because the latter can be difficult to diagnose properly, safeguards may be needed in order to prevent the application of CDS for the wrong reasons.

Improving prescription in palliative sedation: compliance with dutch guidelines.

BACKGROUND: Two guidelines addressing palliative sedation have been published in the Netherlands in 2002 and 2003. The objective of the present study is to determine adherence to the guidelines for palliative sedation with regard to prescription. The study is restricted to the practice of continuous deep palliative sedation. METHODS: A structured retrospective questionnaire was administered to 1464 physicians concerning their last case of deep sedation during the past 12 months. Physicians included Dutch hospital specialists, general practitioners, and nursing home physicians. RESULTS: The response rate was 36%. A total of 43% (95% confidence interval [CI], 37%-49%) of the responding physicians did not adhere to the guidelines. Sources of deviation were the use of basic medication other than a benzodiazepine (30%), which mostly involved morphine, and omissions in adjuvant medication (13%). Nonsignificant positive association was found for consultation of a palliative care expert (odds ratio [OR], 3.86; 95% CI, 0.92-8.87). Significant positive association was found for the physician being a palliative care expert himself or herself (OR, 4.42; 95% CI, 1.42-13.75) and the use of guidelines (OR, 1.74; 95% CI, 1.02-2.98). Treatment of pain symptoms (OR, 2.21; 95% CI, 1.28-3.82), anxiety (OR, 2.32; 95% CI, 1.33-4.06), vomiting (OR, 6.52; 95% CI, 1.08-39.50), and loss of dignity (OR, 3.93; 95% CI, 1.80-8.58) also correlated positively. Treatment of delirium correlated negatively with adherence to the guidelines (OR, 0.22; 95% CI,0.11-0.44). CONCLUSIONS: The rate of 43% noncompliance to the guidelines was mostly owing to the omission of continued antipsychotic treatment for delirium and the use of morphine as the single therapy for the purpose of deep sedation. Future efforts, like better use and knowledge of the guidelines and a larger involvement of consultation teams, should increase adherence to the guidelines.