Abstract: An expert working group of the European Association for Palliative Care has revised and updated its guidelines on the use of morphine in the management of cancer pain. The revised recommendations presented here give guidance on the use of morphine and the alternative strong opioid analgesics which have been introduced in many parts of the world in recent years. Practical strategies for dealing with difficult situations are described presenting a consensus view where supporting evidence is lacking. The strength of the evidence on which each recommendation is based is indicated.

Abstract: Successful pain management with opioids requires that adequate analgesia be achieved without excessive adverse effects. By these criteria, a substantial minority of patients treated with oral morphine (10% to 30%) do not have a successful outcome because of (1) excessive adverse effects, (2) inadequate analgesia, or (3) a combination of both excessive adverse effects along with inadequate analgesia. The management of excessive adverse effects remains a major clinical challenge. Multiple approaches have been described to address this problem. The clinical challenge of selecting the best option is enhanced by the lack of definitive, evidence-based comparative data. Indeed, this aspect of opioid therapeutics has become a focus of substantial controversy. This study presents evidence-based recommendations for clinical-practice formulated by an Expert Working Group of the European Association of Palliative Care (EAPC) Research NETWORK: These recommendations highlight the need for careful evaluation to distinguish between morphine adverse effects from comorbidity, dehydration, or drug interactions, and initial consideration of dose reduction (possibly by the addition of a co analgesic). If side effects persist, the clinician should consider options of symptomatic management of the adverse effect, opioid rotation, or switching route of systemic administration. The approaches are described and guidelines are provided to aid in selecting between therapeutic options.

Abstract: ContextStudies using physician implicit review have suggested that the number of deaths due to medical errors in US hospitals is extremely high. However, some have questioned the validity of these estimates.ObjectiveTo examine the reliability of reviewer ratings of medical error and the implications of a death described as "preventable by better care" in terms of the probability of immediate and short-term survival if care had been optimal.DesignRetrospective implicit review of medical records from 1995-1996.Setting and ParticipantsFourteen board-certified, trained internists used a previously tested structured implicit review instrument to conduct 383 reviews of 111 hospital deaths at 7 Department of Veterans Affairs medical centers, oversampling for markers previously found to be associated with high rates of preventable deaths. Patients considered terminally ill who received comfort care only were excluded.Main Outcome MeasuresReviewer estimates of whether deaths could have been prevented by optimal care (rated on a 5-point scale) and of the probability that patients would have lived to discharge or for 3 months or more if care had been optimal (rated from 0%-100%).ResultsSimilar to previous studies, almost a quarter (22.7%) of active-care patient deaths were rated as at least possibly preventable by optimal care, with 6.0% rated as probably or definitely preventable. Interrater reliability for these ratings was also similar to previous studies (0.34 for 2 reviewers). The reviewers' estimates of the percentage of patients who would have left the hospital alive had optimal care been provided was 6.0% (95% confidence interval [CI], 3.4%-8.6%). However, after considering 3-month prognosis and adjusting for the variability and skewness of reviewers' ratings, clinicians estimated that only 0.5% (95% CI, 0.3%-0.7%) of patients who died would have lived 3 months or more in good cognitive health if care had been optimal, representing roughly 1 patient per 10 000 admissions to the study hospitals.ConclusionsMedical errors are a major concern regardless of patients' life expectancies, but our study suggests that previous interpretations of medical error statistics are probably misleading. Our data place the estimates of preventable deaths in context, pointing out the limitations of this means of identifying medical errors and assessing their potential implications for patient outcomes.

Abstract: Most patients with advanced cancer develop diverse symptoms that can limit the efficacy of pain treatment and undermine their quality of life. The present study surveys symptom prevalence, etiology and severity in 593 cancer patients treated by a pain service. Non-opioid analgesics, opioids and adjuvants were administered following the WHO-guidelines for cancer pain relief. Other symptoms were systematically treated by appropriate adjuvant drugs. Pain and symptom severity was measured daily by patient self-assessment; the physicians of the pain service assessed symptom etiology and the severity of confusion, coma and gastrointestinal obstruction at each visit. The patients were treated for an average period of 51 days. Efficacy of pain treatment was good in 70%, satisfactory in 16% and inadequate in 14% of patients. The initial treatment caused a significant reduction in the average number of symptoms from four to three. Prevalence and severity of anorexia, impaired activity, confusion, mood changes, insomnia, constipation, dyspepsia, dyspnoea, coughing, dysphagia and urinary symptoms were significantly reduced, those of sedation, other neuropsychiatric symptoms and dry mouth were significantly increased and those of coma, vertigo, diarrhea, nausea, vomiting, intestinal obstruction, erythema, pruritus and sweating remained unchanged. The most frequent symptoms were impaired activity (74% of days), mood changes (22%), constipation (23%), nausea (23%) and dry mouth (20%). The highest severity scores were associated with impaired activity, sedation, coma, intestinal obstruction, dysphagia and urinary symptoms. Of all 23 symptoms, only constipation, erythema and dry mouth were assessed as being most frequently caused by the analgesic regimen. In conclusion, the high prevalence and severity of many symptoms in far advanced cancer can be reduced, if pain treatment is combined with systematic symptom control. Nevertheless, general, neuropsychiatric and gastrointestinal symptoms are experienced during a major part of treatment time and pain relief was inadequate in 14% of patients. Cancer pain management has to be embedded in a frame of palliative care, taking all the possibilities of symptom management into consideration.

Abstract: Hopelessness, loss of meaning, and existential distress are proposed as the core features of the diagnostic category of demoralization syndrome. This syndrome can be differentiated from depression and is recognizable in palliative care settings. It is associated with chronic medical illness, disability, bodily disfigurement, fear of loss of dignity, social isolation, and--where there is a subjective sense of incompetence--feelings of greater dependency on others or the perception of being a burden. Because of the sense of impotence or helplessness, those with the syndrome predictably progress to a desire to die or to commit suicide. A treatment approach is described which has the potential to alleviate the distress caused by this syndrome. Overall, demoralization syndrome has satisfactory face, descriptive, predictive, construct, and divergent validity, suggesting its utility as a diagnostic category in palliative care.

Abstract: 17.9% to 27.4%) of the time, would communicate the same survival estimate they formulated 37% (CI, 31.5% to 42.5%) of the time, and would communicate a survival estimate different from the one they formulated 40.3% (CI, 34.8% to 45.9%) of the time. Of the discrepant survival estimates, most (70.2%) were optimistically discrepant. Multivariate analysis revealed that older patients were more likely to receive frank survival estimates, that the most experienced physicians and the physicians who were least confident about their prognoses were more likely to favor no disclosure over frank disclosure, and that female physicians were less likely to favor frank disclosure over pessimistically discrepant disclosure. Conclusions:Physicians reported that even if patients with cancer requested survival estimates, they would provide a frank estimate only 37% of the time and would provide no estimate, a conscious overestimate, or a conscious underestimate most of the time (63%). This pattern may contribute to the observed disparities between physicians’ and patients’ estimates of survival. Ann Intern Med.2001;134:1096-1105.

Abstract: Culture fundamentally shapes how individuals make meaning out of illness, suffering, and dying. With increasing diversity in the United States, encounters between patients and physicians of different backgrounds are becoming more common. Thus the risk for cross-cultural misunderstandings surrounding care at the end of life is also increasing. Studies have shown cultural differences in attitudes toward truth telling, life-prolonging technology, and decision-making styles at the end of life. Using 2 case studies of patients, one of an African American couple in the southern United States and the other of a Chinese-American family in Hawaii, we outline some of the major issues involved in cross-cultural care and indicate how the patient, family, and clinician can navigate among differing cultural beliefs, values, and practices. Skilled use of cross-cultural understanding and communication techniques increases the likelihood that both the process and outcomes of care are satisfactory for all involved.

Abstract: ObjectiveTo identify critical psychosocial supports and areas of conflict for families of intensive care unit (ICU) patients during decisions to withdraw or withhold life-sustaining treatment.DesignCross-sectional survey.SettingSix intensive care units in a tertiary care academic medical center.Part

Abstract: T hese recommendations are intended to provide information and advice for clinicians who deliver end-of-life care in intensive care units (ICUs). The number of deaths that occur in the ICU after the withdrawal of life support is increasing, with one recent survey finding that 90% of patients who die in ICUs now do so after a decision to limit therapy (1). Although there is significant variability in the frequency of withdrawal of life support both within countries (2) and among cultures (3), the general trend is international in scope (4). Nevertheless, most evidence indicates that patients and families remain dissatisfied with the care they receive once a decision has been made to withdraw life support (5). Although intensive care clinicians traditionally have seen their goals as curing disease and restoring health and function, these goals must now expand when necessary to also include assuring patients of a “good death.” Just as developments in knowledge and technology have dramatically enhanced our ability to restore patients to health, similar developments now make it possible for almost all patients to have a death that is dignified and free from pain. The management of patients at the end of life can be divided into two phases. The first concerns the process of shared decision-making that leads from the pursuit of cure or recovery to the pursuit of comfort and freedom from pain. The second concerns the actions that are taken once this shift in goals has been made and focuses on both the humanistic and technical skills that must be enlisted to ensure that the needs of the patient and family are met. Although both of these issues are critically important in end-oflife care, the decision-making process is not unique to the ICU environment and has been addressed by others (6 –11). These recommendations, therefore, do not deal primarily with the process that leads to the decision to forego lifeprolonging treatments but rather focus on the implementation of that decision, with particular emphasis on the ICU environment. This division of the process into two phases is necessarily somewhat artificial. Patients and families do not suddenly switch from the hope for survival and cure to the acceptance of death and pursuit of comfort. This process happens gradually over varying periods of time ranging from hours to weeks. Similarly, the forgoing of life-sustaining treatments rarely happens all at once and is likewise a stepwise process that parallels the shift in goals. Although acknowledging the relationship between the process of decision-making and the corresponding actions, these guidelines will focus on the latter. These recommendations are written from the emerging perspective that palliative care and intensive care are not mutually exclusive options but rather should be coexistent (12–14). All intensive care patients are at an increased risk of mortality and can benefit from inclusion of the principles of palliative care in their management. The degree to which treatments are focused on cure vs. palliation depends on the clinical situation, but in principle both are always present to some degree. Figure 1 illustrates a useful paradigm for the integration of palliative care and curative care over the course of a patient’s illness. Although many patients are best served by transfer to other environments (e.g., home, hospice, or ward) that may be more conducive to palliative care, some patients are so dependent on ICU technology at the end of life that transfer is not possible. For those who are expected to survive for only a short time after the removal of life-sustaining technology, transfer of the patient to a new environment with new caregivers is awkward and may disrupt the patient’s medical care. For these reasons, among others, intensive care clinicians must become as skilled and knowledgeable at forgoing life-sustaining treatments as they are at delivering care aimed at survival and cure.

Abstract: Objective To characterize the symptom experience of a cohort of intensive care unit (ICU) patients at high risk for hospital death. Design Prospective analysis of patients with a present or past diagnosis of cancer who were consecutively admitted to a medical ICU during an 8-month period. Setting Academic, university-affiliated, tertiary-care, urban medical center. Patients One hundred cancer patients treated in a medical ICU. Intervention Assessment of symptoms. Measurements Patients’ self-reports of symptoms using the Edmonton Symptom Assessment Scale (ESAS), and ratings of pain or discomfort associated with ICU diagnostic/therapeutic procedures and of stress associated with conditions in the ICU. Main Results Hospital mortality for the group was 56%. Fifty patients had the capacity to respond to the ESAS, among whom 100% provided symptom reports. Between 55% and 75% of ESAS responders reported experiencing pain, discomfort, anxiety, sleep disturbance, or unsatisfied hunger or thirst that they rated as moderate or severe, whereas depression and dyspnea at these levels were reported by approximately 40% and 33% of responders, respectively. Significant pain, discomfort, or both were associated with common ICU procedures, but most procedure-related symptoms were controlled adequately for a majority of patients. Inability to communicate, sleep disruption, and limitations on visiting were particularly stressful among ICU conditions studied. Conclusions Among critically ill cancer patients, multiple distressing symptoms were common in the ICU, often at significant levels of severity. Symptom assessment may suggest more effective strategies for symptom control and may direct decisions about appropriate use of ICU therapies.

Abstract: The intensive care unit (ICU) represents a hospital setting in which death and discussion about end-of-life care are common, yet these conversations are often difficult. Such difficulties arise, in part, because a family may be facing an unexpected poor prognosis associated with an acute illness or exacerbation and, in part, because the ICU orientation is one of saving lives. Understanding and improving communication about end-of-life care between clinicians and families in the ICU is an important focus for improving the quality of care in the ICU. This communication often occurs in the "family conference" attended by several family members and members of the ICU team, including physicians, nurses, and social workers. In this article, we review the importance of communication about end-of-life care during the family conference and make specific recommendations for physicians and nurses interested in improving the quality of their communication about end-of-life care with family members. Because excellent end-of-life care is an important part of high-quality intensive care, ICU clinicians should approach the family conference with the same care and planning that they approach other ICU procedures. This article outlines specific steps that may facilitate good communication about end-of-life care in the ICU before, during, and after the conference. The article also provides direction for the future to improve physician-family and nurse-family communication about end-of-life care in the ICU and a research agenda to improve this communication. Research to examine and improve communication about end-of-life care in the ICU must proceed in conjunction with ongoing empiric efforts to improve the quality of care we provide to patients who die during or shortly after a stay in the ICU.

Abstract: This paper reports on data from the Regional Study of Care for the Dying, conducted in 1990, and compares symptoms, care and service utilization for patients with chronic lung diseases (CLD) and lung cancer (LC) in the final 12 months of life. Post-bereavement structured interviews were conducted with informal carers of 449 LC patients and 87 CLD patients. The LC patients were significantly younger than those with CLD (P = 0.001) and these respondents were more likely to have been a spouse (P = 0.034). No differences were found in the mean number of symptoms reported by the two groups in the final year or week of life, although the CLD patients were more likely to have experienced these symptoms for longer. Significantly more patients with CLD than LC experienced breathlessness in the final year (94% CLD vs 78% LC, P < 0.001) and final week (91% CLD vs 69% LC, P < 0.001) of life. Significantly more LC patients were reported to have experienced anorexia (76% LC vs 67% CLD, P = 0.06) and constipation (59% LC vs 44% CLD, p = 0.01) in the final year of life. There were no differences in general practitioner use, but LC patients were reported to have received more help from district nurses (52% LC vs 39% CLD, P = 0.025) and from a palliative care nurse (29% LC vs 0% CLD, P < 0.001). More CLD patients were reported to have received help from social services (29% CLD vs 18% LC, P = 0.037). LC patients were reported to be more likely to have known they might die (76% LC vs 62% CLD, P = 0.003) and to have been told this by a hospital doctor (30% LC vs 8% CLD, P = 0.001). Among those that knew, LC patients were told earlier prior to death than CLD patients. This study suggests that patients with CLD at the end of life have physical and psychosocial needs at least as severe as patients with lung cancer.

Abstract: Background. Prenatal echocardiography can identify the fetus that has complex congenital heart disease and may improve early management and surgical outcome. Prenatal diagnosis may be particularly beneficial to patients who have hypoplastic left heart syndrome (HLHS) and who are at risk for hypoxic-ischemic insult at presentation. Objectives. We sought to determine whether prenatal diagnosis reduces neurologic morbidity and operative mortality in patients who undergo palliative surgery for the HLHS. Methods. Data from all patients who had HLHS, except for those with lethal genetic anomalies, and who were admitted to our institution between July 1992 and September 1997 were analyzed to assess the impact of prenatal diagnosis on preoperative management, neurologic morbidity, and surgical mortality. The primary outcome measures were hospital mortality and the incidence of adverse neurologic events (seizure or coma). Results. There were 216 patients who had HLHS and were referred for surgical palliation, 79 (36.6%) of whom had been diagnosed prenatally. All patients who had been diagnosed prenatally were delivered in an advanced nursery and were started on prostaglandin E1 on the first day of life. Patients whose HLHS was diagnosed postnatally were begun on prostaglandin E1 later in life (median = day 2 [range = 1–28 days]). There were 4 preoperative deaths and 53 operative or postoperative deaths. Overall hospital mortality was 26.4% and did not differ between patients whose HLHS had been diagnosed prenatally and those whose HLHS had been diagnosed postnatally. With the use of multivariable analysis, prenatal diagnosis was associated with fewer adverse perioperative neurologic events in the patients whose HLHS had been diagnosed prenatally than in those whose HLHS had been diagnosed postnatally (odds ratio = 0.46). Conclusions. These data suggest that prenatal diagnosis has a favorable impact on treatment of patients who have HLHS and are undergoing staged palliation and reduces early neurologic morbidity. Prenatal diagnosis was not associated with reduced hospital mortality. It is possible that prenatal diagnosis may improve long-term neurologic outcome.

Abstract: Oral transmucosal fentanyl citrate (OTFC); Actiq) is a drug delivery formulation used for management of breakthrough cancer pain. Previous studies with open-label comparisons indicated OTFC was more effective than patients' usual opioid for breakthrough pain. The objective of this study was to compare OTFC and morphine sulfate immediate release (MSIR) for management of breakthrough pain in patients receiving a fixed scheduled opioid regimen. This double-blind, double-dummy, randomized, multiple crossover study was conducted at 19 US university- and community-based hospitals and clinics and comprised 134 adult ambulatory cancer patients. Patients were receiving a fixed scheduled opioid regimen equivalent to 60-1000 mg/day oral morphine or 50-300 microg/h transdermal fentanyl, were using a 'successful' MSIR dose (15-60 mg) as defined by entry criteria, and were experiencing 1-4 episodes of breakthrough pain per day. In open-label fashion, OTFC was titrated such that a single unit (200-1600 microg) provided adequate pain relief with acceptable side effects. Successfully titrated patients entered the double-blind phase of the study and received ten prenumbered sets of randomized capsules and oral transmucosal units. Five sets were the successful OTFC dose paired with placebo capsules, and five sets were placebo OTFC paired with capsules containing the successful MSIR dose. Patients took one set of study medication for each episode of target breakthrough pain. Pain intensity (PI), pain relief (PR) and global performance of medication (GP) scores were recorded. Pain intensity differences (PID) were calculated and 15-min PID was the primary efficacy variable. Adverse events were recorded. Sixty-nine percent of patients (93/134) found a successful dose of OTFC. OTFC yielded outcomes (PI, PID, and PR) at all time points that were significantly better than MSIR. GP also favored OTFC and more patients opted to continue with OTFC than MSIR following the study. Somnolence, nausea, constipation, and dizziness were the most common drug-associated side effects. In conclusion, OTFC was more effective than MSIR in treating breakthrough cancer pain.

Abstract: PURPOSE: To examine patient preferences as well as physician perceptions of these preferences for decision making and communication in palliative care. PATIENTS AND METHODS: Medical decision-making preferences (DMPs) were prospectively studied in 78 assessable cancer patients after initial assessment at a palliative care outpatient clinic. DMPs were assessed with a questionnaire using five possible choices ranging from 1 (patient prefers to make the treatment decision) to 5 (patient prefers the physician to make the decision). In addition, the physician’s perception of this preference was assessed. RESULTS: Full concordance between the physician and the patient was seen in 30 (38%) of 78 cases; when the five original categories were recombined to cover active, shared, and passive decision making, there was concordance in 35 (45%) of 78 cases. The kappa coefficient for agreement between physician and patient was poor at 0.14 (95% confidence limit, −0.01 to 0.30) for simple kappa and 0.17 (95% confidence in...

Abstract: Study Design: A randomized between-groups design evaluated massage therapy versus relaxation for chronic low back pain.Objectives: Treatment effects were evaluated for reducing pain, depression, an...

Abstract: In our societya (TM)s aggressive pursuit of cures for cancer, we have neglected symptom control and comfort care. Less than one percent of the National Cancer Institutea (TM)s budget is spent on any aspect of palliative care research or education, despite the half million people who die of cancer each year and the larger number living with cancer and its symptoms. Improving Palliative Care for Cancer examines the barriersa "scientific, policy, and sociala "that keep those in need from getting good palliative care. It goes on to recommend public- and private-sector actions that would lead to the development of more effective palliative interventions; better information about currently used interventions; and greater knowledge about, and access to, palliative care for all those with cancer who would benefit from it.

Abstract: This article begins by reviewing the history of etiologic thinking in the field of temporomandibular disorders (TMD). I conclude from this review that not only are the old mechanistic etiologic concepts incorrect, but also that 2 of the most popular current concepts (biopsychosocial and multifactorial) are seriously flawed. Therefore, what we really have at the individual TMD patient level is nearly always an idiopathic situation--we simply do not know enough, or cannot measure enough, or cannot precisely determine why each patient has a TMD. In addition, we do not understand the host resistance factors that ultimately determine why one person gets sick while another does not. The issue of "why" (etiology) must be differentiated from the issue of "how" (pathophysiology), both semantically and intellectually, to discuss all of this properly. However, our current inability to precisely identify etiologies in TMD patients does not prevent us from providing sensible (and often successful) treatment for most of these patients. Many health conditions currently are treated by physicians and dentists with either incomplete or flawed understanding of their etiology, but the availability of empirical data about treatment outcomes permits some level of appropriate care to be given. Fortunately, a large number of comparative studies have been done in the field of TMD therapy, providing us with a basis for selecting initial therapies as well as for dealing with treatment failures. Even in the absence of a perfect understanding of etiology, we still can provide good conservative care, and we should avoid aggressive and irreversible treatments, especially when they are based on flawed concepts of etiology. The article concludes by discussing current basic science research activities in the field of TMD and orofacial pain. I propose that these ongoing studies of the molecular and cellular mechanisms of joint disease, muscle pain, and chronic pain are the most likely avenues to future progress in this field, as specific countermeasures are developed to become the basis for more precisely targeted therapies.

Abstract: BACKGROUND The prognosis of anaplastic thyroid carcinoma (ATC) has been dismal. The objective of this study was to identify prognostic factors in patients who had prolonged survival. METHODS Patients with ATC were identified from a computer database at a tertiary referral center. Univariate and multivariate analyses for survival differences were performed using the Kaplan–Meier log-rank statistic and the Cox proportional hazards model, respectively. RESULTS Of the 33 evaluable patients, median survival was 3.8 months. Median age was 69 years. Prior goiter was present in 6 patients (18%), and 6 (18%) had prior thyroid carcinoma. Median tumor size was 6 cm, and 12 (36%) had adjacent well-differentiated carcinoma. Of the 26 patients who underwent neck exploration, 8 patients were potentially cured and received postoperative chemotherapy and irradiation; 4 (50%) were surgically macroscopically free of disease, and 4 (50%) patients had minimal residual disease after total thyroidectomy and resection of tumor adherent to adjacent structures. Four of these 8 patients survived longer than 2 years; their 5-year survival estimate was 50%. Eighteen patients underwent palliative resection of neck disease, leaving macroscopic residual disease or distant metastases; postoperative adjuvant chemotherapy and irradiation were administered in 16 of these 18 patients. Seven patients were treated with only chemotherapy and irradiation. In patients treated with potentially curative resection, median survival was 43 months compared with 3 months with palliative resection (P =0.002); the median survival of 3.3 months with only chemotherapy and irradiation was no different than palliative resection (P =0.63). No association was found between survival and age, prior goiter, prior thyroid carcinoma, adjacent differentiated carcinoma, or tumor size. CONCLUSIONS Although the prognosis of most patients with ATC continues to be poor, complete resection of ATC combined with postoperative adjuvant chemotherapy and irradiation resulted in long-term survival, even with persistent minimal disease that remained on vital structures. An aggressive attempt at maximal tumor debulking followed by adjuvant therapy was found to be warranted in patients with localized ATC. Cancer 2001;91:2335–42. © 2001 American Cancer Society.

Abstract: Systematic evaluation of end-of-life care in dementia has been hampered by a lack of instruments to specifically address those issues that are unique for persons who are dying with dementia. This study evaluated psychometric properties of three scales designed to measure outcomes of care of persons suffering from terminal dementia. A survey of family caregivers whose loved one died during the past year was conducted using a questionnaire that included questions regarding satisfaction with care, physical and emotional symptoms that occurred during the last 90 days of the care recipient's life, and comfort during the dying process. Three scales were developed based on responses from 156 questionnaires: Satisfaction with Care at the End-of-Life in Dementia (SWC-EOLD), Symptom Management at the End-of-Life in Dementia (SM-EOLD) with Physical and Psychological Symptoms subscales, and Comfort Assessment in Dying with Dementia (CAD-EOLD) with four subscales: Physical Distress, Dying Symptoms, Emotional Distress, and Well Being. The three scales developed and evaluated in this study can be used as outcome measures in studies investigating effectiveness of interventions aimed to improve end-of-life care for individuals with dementia.

Abstract: The fear of “choking to death” is on the mind of most patients suffering from amyotrophic lateral sclerosis (ALS). So far, however, there have been no systematic surveys concerning the dying phase in a general ALS population. We therefore performed a structured telephone interview with the relatives of 121 patients who died from ALS and were followed by the Motor Neuron Outpatient Clinic of the Department of Neurology, University of Munich, Germany. These data are compared with those obtained by a retrospective analysis of medical records of 50 ALS patients who were followed by the Wisdom Hospice, Rochester, UK. The data show that most ALS patients (Germany 88 %, UK 98 %) died peacefully, and no patient “choked to death”. The symptoms most frequently reported for the last 24 hours were dyspnoea, coughing, anxiety and restlessness. Around half (G 55 %, UK 52 %) of the patients died at home. The main palliative measures in place during the terminal phase were: home mechanical ventilation (G 21 %, UK 0 %), percutaneous endoscopic gastrostomy (G 27 %, UK 14 %), morphine (G 27 %, UK 82 %) and benzodiazepines (G 32 %, UK 64 %). The use of these palliative measures was judged to be beneficial by almost all relatives. These data support the hypothesis of a peaceful death process in ALS and should be communicated to patients and their relatives, at the latest after the onset of dyspnoea, to relieve unwarranted fears.

Abstract: We now have a decade of experience with advance directives since the Patient Self-Determination Act was signed into law in November 1990. With few exceptions, empirical studies have yielded disappointing results. Advance directives are recorded by medical personnel more often but are not completed by patients more frequently. The process of recording them does not enhance patient-physician communication. When available, advance directives do not change care or reduce hospital resources. The most ambitious study of advance care planning, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments, failed to show any change in outcomes after an extensive intervention. Investigators have attempted to identify the reasons why the optimism about the Patient Self-Determination Act has not been realized. Many interventions to facilitate advance care planning were focused on specific treatment decisions. Recent research suggests that preferences for care are not fixed but emerge in a clinical context from a process of discussion and feedback within the network of the patient's most important relationships. Clinical trials emphasizing this approach have been successful. The approach that emphasizes communication, building trust over time, and working within the patient's most important relationships offers a hopeful model for clinicians working in intensive care units.

Abstract: Object. The aim of this study was to investigate outcomes and complication rates associated with percutaneous balloon compression (PBC) of the trigeminal ganglion over a long follow-up period. Methods. This retrospective review was conducted in 496 patients with typical symptoms of unilateral trigeminal neuralgia who underwent 531 PBCs of the trigeminal ganglion between 1980 and 1999. The mean length of follow up was 10.7 years. The treatment used was a modification of that first described by Mullan and Lichtor in 1983. There were nine technical failures. Of the 522 successful procedures, prompt pain relief ensued in all patients except one. Recurrence of pain was found in 95 patients (19.2%) within 5 years and in 158 patients (31.9%) over the entire study period. Symptomatic dysesthesias occurred in 19 patients (3.8%), but corneal anesthesia and anesthesia dolorosa did not. Conclusions. In this review the authors present data on the largest cohort of patients with the longest follow up for this procedure...

Abstract: Background Breathlessness is a common symptom in people with advanced disease. The most effective treatments are aimed at treating the underlying cause of the breathlessness but this may not be possible and symptomatic treatment is often necessary. Strategies for the symptomatic treatment of breathlessness have never been systematically evaluated. Opioids are commonly used to treat breathlessness: the mechanisms underlying their effectiveness are not completely clear and there have been few good-sized trials in this area. Objectives To determine the effectiveness of opioid drugs given by any route in relieving the symptom of breathlessness in patients who are being treated palliatively. Search strategy An electronic search was carried out of Medline, Embase, Cinahl, the Cochrane library, Dissertation Abstracts, Cancercd and SIGLE. Review articles and reference lists of retrieved articles were hand searched. Date of most recent search: May 1999 Selection criteria Randomised double-blind, controlled trials comparing the use of any opioid drug against placebo for the relief of breathlessness were included. Patients with any illness suffering from breathlessness were included and the intervention was any opioid, given by any route, in any dose. Data collection and analysis Studies identified by the search were imported into a reference manager database. The full texts of the relevant studies were retrieved and data were independently extracted by two reviewers. Studies were quality scored according to the Jadad scale. The primary outcome measure used was breathlessness and the secondary outcome measure was exercise tolerance. Studies were divided into non-nebulised and nebulised and were analysed both separately and together. A qualitative analysis was carried out of adverse effects of opioids. Where appropriate, meta-analysis was carried out. Main results Eighteen studies were identified of which nine involved the non-nebulised route of administration and nine the nebulised route. A small but statistically significant positive effect of opioids was seen on breathlessness in the analysis of studies using non-nebulised opioids. There was no statistically significant positive effect seen for exercise tolerance in either group of studies or for breathlessness in the studies using nebulised opioids. Reviewer's conclusions There is evidence to support the use of oral or parenteral opioids to palliate breathlessness although numbers of patients involved in the studies were small. No evidence was found to support the use of nebulised opioids. Further research with larger numbers of patients, using standardised protocols and with quality of life measures is needed.