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The Medical Assistance in Dying (MAiD) program has been steadily expanding in Canada, and is expected to continue to do so. There are a substantial number of Canadians with pacemakers and defibrillators, many of whom are potential MAiD recipients. There is a need for review and reflection of standardisation of cardiac device management in MAiD patients, not only because of ethical concerns, but also because of the complexity of management at end of life. This document examines the status and role of cardiac devices (pacemakers and intracardiac defibrillators) and their physiologic interactions and influences during the MAiD process, and provides recommendations for their management., (Copyright © 2021 Canadian Cardiovascular Society. Published by Elsevier Inc. All rights reserved.)

Professional values reflect nurses' understanding of how to deliver professional care, which might influence nurses' attitudes and caring behaviors during end-of-life care. However, limited research has been conducted to explore nurses' experiences of professional development during end-of-life care, and theoretical explanations are scarce about how nurses enact their professional values during the caring process. This study explored the social process of professional values involved in end-of-life care in the Chinese cultural context by adopting a constructivist grounded theory approach. Twenty semi-structured in-depth interviews with 15 nurses from three hospitals in southeastern China were conducted. A theoretical framework emerged when focusing on the social process of "reframing the meaning of life and professional values" to facilitate professional care for terminally ill patients. Three main categories were sequentially identified as "recognizing the dilemmas when caring for terminally ill patients," "applying strategies to deal with values conflict," and "reconstructing values." This theoretical framework may be applied as a practical framework for equipping nurses with effective strategies to cultivate professional values, including the provision of adequate end-of-life knowledge, and a supportive workplace environment., (© 2020 John Wiley & Sons Australia, Ltd.)

Background: Most terminally ill cancer patients prefer to die at home, but a majority die in institutional settings. Research questions about this discrepancy have not been fully answered. This study applies artificial intelligence and machine learning techniques to explore the complex network of factors and the cause-effect relationships affecting the place of death, with the ultimate aim of developing policies favouring home-based end-of-life care., Methods: A data mining algorithm and a causal probabilistic model for data analysis were developed with information derived from expert knowledge that was merged with data from 116 deceased cancer patients in southern Switzerland. This data set was obtained via a retrospective clinical chart review., Results: Dependencies of disease and treatment-related decisions demonstrate an influence on the place of death of 13%. Anticancer treatment in advanced disease prevents or delays communication about the end of life between oncologists, patients and families. Unknown preferences for the place of death represent a great barrier to a home death. A further barrier is the limited availability of family caregivers for terminal home care. The family's preference for the last place of care has a high impact on the place of death of 51%, while the influence of the patient's preference is low, at 14%. Approximately one-third of family systems can be empowered by health care professionals to provide home care through open end-of-life communication and good symptom management. Such intervention has an influence on the place of death of 17%. If families express a convincing preference for home care, the involvement of a specialist palliative home care service can increase the probability of home deaths by 24%., Conclusion: Concerning death at home, open communication about death and dying is essential. Furthermore, for the patient preference for home care to be respected, the family's decision for the last place of care seems to be key. The early initiation of family-centred palliative care and the provision of specialist palliative home care for patients who wish to die at home are suggested.

Background: End-of-life caregiving frequently is managed by friends and family. Studies on hastened death, including aid in dying or assisted suicide, indicate friends and family also play essential roles before, during, and after death. No studies have compared the experiences of caregivers in hastened and non-hastened death. The study aim is to compare end-of-life and hastened death caregiving experience using Hudson's modified stress-coping model for palliative caregiving., Method: Narrative synthesis of qualitative studies for caregivers at end of life and in hastened death, with 9946 end-of life and 1414 hastened death qualitative, peer-reviewed research articles extracted from MEDLINE, CINAHL, Web of Science, and PsycINFO, published between January 1998 and April 2020., Results: Forty-two end-of-life caregiving and 12 hastened death caregiving articles met inclusion criteria. In both end-of-life and hastened death contexts, caregivers are motivated to ease patient suffering and may put their own needs or feelings aside to focus on that priority. Hastened death caregivers' expectation of impending death and the short duration of caregiving may result in less caregiver burden. Acceptance of the patient's condition, social support, and support from healthcare professionals all appear to improve caregiver experience. However, data on hastened death are limited., Conclusion: Caregivers in both groups sought closeness with the patient and reported satisfaction at having done their best to care for the patient in a critical time. Awareness of anticipated death and support from healthcare professionals appear to reduce caregiver stress. The modified stress-coping framework is an effective lens for interpreting caregivers' experiences at end of life and in the context of hastened death.

Life-sustaining treatments (LSTs) and end-of-life (EOL) care's goal for prolonging one's life are defined as aggressive EOL care among critically ill patients. They have limited effects and add unnecessary financial burden to advanced cancer patients. A questionnaire survey was conducted to collect information on demographics, disease conditions, preference for LSTs, and goal of EOL care among advanced cancer patients of comprehensive grade-A tertiary hospitals in Wuhan, mainland China. Most patients preferred to accept LSTs when they were in a critical condition, including cardiopulmonary resuscitation (89.9%), mechanical ventilation support (85.7%), nasogastric tube feeding (84.1%), blood transfusion (89.8%), general surgery (87.5%), and hemodialysis (85.8%). Most (88%) preferred prolonging life as the goal of EOL care. Logistic regression showed common influencing factors were participants who completed junior high/high school or below and were financially adequate had higher reference for aggressive EOL care. Patients whose physician had accurately disclosed prognosis; however, showed a decrease trend for aggressive EOL care. Most advanced cancer patients preferred to accept aggressive EOL care. Discussions about prognosis disclosure among physicians and patients should be improved. Education about LSTs' limitations and comfort-oriented care's benefits should be promoted among the advanced cancer patients in mainland China.

Death rattle occurs during the last days of life, and relatives of those afflicted frequently report that it is very distressful. However, there is no effective treatment for it. The purpose of this study was to investigate the perceptions of Japanese palliative care physicians in clinical practice in Japan. We conducted a nationwide survey of 268 physicians via an anonymous, self-report questionnaire. We assessed pharmacological and non-pharmacological management and anticholinergic agent choice. One hundred eighty-nine physicians (70.5%) returned the questionnaires. Fifty-five participants (29.1%) treating patients with Type-1 (real death rattle) and 36 participants (19%) treating patients with Type-2 (pseudo-death rattle) death rattle reported that they would frequently administer an anticholinergic agent. One-fourth would administer scopolamine butylbromide or scopolamine hydrobromide. In conclusion, more Japanese palliative care physicians thought that anticholinergic agents might be effective for treating Type-1 death rattle rather than Type-2. Further clinical trials of these agents are needed., (© The Author(s) 2020. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: As part of a broader study to improve the capacity for advance care planning (ACP) in primary healthcare settings, the research team set out to develop and validate a computerized algorithm to help primary care physicians identify individuals at risk of death, and also carried out focus groups and interviews with relevant stakeholder groups. Interviews with patients and family caregivers were carried out in parallel to algorithm development and validation to examine (1) views on early identification of individuals at risk of deteriorating health or dying; (2) views on the use of a computerized algorithm for early identification; and (3) preferences and challenges for ACP., Methods: Fourteen participants were recruited from two Canadian provinces. Participants included individuals aged 65 and older with declining health and self-identified caregivers of individuals aged 65 and older with declining health. Semi-structured interviews were conducted via telephone. A qualitative descriptive analytic approach was employed, which focused on summarizing and describing the informational contents of the data., Results: Participants supported the early identification of patients at risk of deteriorating health or dying. Early identification was viewed as conducive to planning not only for death, but for the remainder of life. Participants were also supportive of the use of a computerized algorithm to assist with early identification, although limitations were recognized. While participants felt that having family physicians assume responsibility for early identification and ACP was appropriate, questions arose around feasibility, including whether family physicians have sufficient time for ACP. Preferences related to the content of and approach to ACP discussions were highly individualized. Required supports during ACP include informational and emotional supports., Conclusions: This work supports the role of primary care providers in the early identification of individuals at risk of deteriorating health or death and the process of ACP. To improve ACP capacity in primary healthcare settings, compensation systems for primary care providers should be adjusted to ensure appropriate compensation and to accommodate longer ACP appointments. Additional resources and more established links to community organizations and services will also be required to facilitate referrals to relevant community services as part of the ACP process.

The need to make sense of one's mortality is of central concern for death studies. We aimed to explore the meaning of aftermath concerns in the process of preparing for death. Using a qualitative approach, we explored aftermath concerns among 25 participants with terminal cancer in China. Three aftermath concern themes were developed from the participants' narratives: mental concerns about parents, material concerns about children, and spiritual concerns about the self. Aftermath concerns are relational because they are not about what happens within an individual, but between individuals which are manifested within the broader cultural, social, economic, and political contexts.

The distinction between physiological and dysfunctional emotions in end-of-life care may be hard, for a twofold reason: on the one hand, the patient as a subject, with specific clinical features, personality, system of values; on the other hand, the clinical judgment by involved health professionals, particularly their specific cut-offs in discrimination between normal suffering and psychopathology. Both excessive/untimely medicalization and underestimation of medical conditions such as anxiety, depression, suicidal ideation, and insomnia may be a risk while dealing with end-of-life patients. Prompt, reliable psychiatric diagnosing contributes significantly to the major goal of dignity in death. The aims of a psychiatric consultation for patients with end-stage diseases should be: controlling concomitant psychiatric symptoms, managing pain and physical symptoms, assisting patient and relatives in the crisis-management, mediating conflicts between patient, family and ward personnel, and planning advocacy.

Objective: This paper is concerned with the phenomenology of death awareness within the context of being diagnosed with terminal cancer. The objective of the research presented here is to provide a deeper insight into terminally ill cancer patients' engagement with their mortality., Method: The analysis forms part of a wider project that involved conducting a metasynthesis of 23 phenomenological studies of the experience of living with the awareness of having terminal cancer published between 2011 and 2016.ResultThe metasynthesis identified four master themes that represent distinct experiential dimensions of living with terminal cancer. This paper focuses on one of these themes, liminality, to provide novel insights into the structure of death awareness whilst living with terminal cancer.Significance of resultsThe results suggest that liminality describes an experiential space from within which terminal cancer patients encounter a new relationship with their existence. Liminality offers opportunities for both connection (e.g., with the natural world) as well as disconnection (e.g., from loved ones and others who still have a future) and therefore contains the potential for suffering and distress as well as for joy and a sense of fulfillment. This understanding of liminality can help healthcare professionals provide psychological support for this client group.

Background: Antimicrobial resistance is increasing and there is an urgent international imperative to optimise use within hospitals. Antibiotic use at the end of life is frequent in the hospital setting, but data on use in Australian hospitals in this context is limited, and optimisation is complicated by clinical/diagnostic, ethical and humanistic considerations. As yet there is little data available on baseline use in hospital end of life settings, an empirical gap we sought to begin to fill here., Methods: A retrospective review of antibiotic use in patients who died in a Queensland hospital between January 2015 and July 2015., Results: One hundred and thirty-seven patients were included, of which 73 were male (53.3%) and the median age was 81 years. Of these patients, 86 received antibiotics at the end of life. The most common antibiotic prescribed was piperacillin/tazobactam (41.9%). The most common site of infection was pulmonary (32.8%). Of 86 patients prescribed antibiotics, 29 patients (33.7%) received antibiotics after futility was documented. 83 patients (96.5%) were administered their antibiotics intravenously., Conclusion: Antimicrobial use at the end of life is frequent, with greater than one third of the patients who died in hospital having their antibiotics continued after discussion of futility. Antimicrobial use in this setting is complex with significant clinical, social and ethical considerations which need to be addressed if antibiotic optimization in this area (and more broadly in the hospital) is to be achieved., (Crown Copyright © 2018. Published by Elsevier B.V. All rights reserved.)

Context: The quality of death has increasingly raised concern because of the physical and psychological suffering of patients with advanced disease. Music therapy has been widely used in palliative care; however, its physical and mental effectiveness remains unclear., Objective: To assess the effectiveness of music therapy during palliative care in improving physiology and psychology outcomes., Methods: Randomized controlled trials evaluating music therapy for terminally ill patients were searched and included from inception up to April 25, 2018. The quality of the studies was assessed using the risk of bias tool recommended by the Cochrane Handbook V.5.1.0., Results: In this study, 11 randomized controlled trials (inter-rater agreement, κ = 0.86) involving 969 participants were included. The quality of the included studies ranged from moderate to high. Compared with general palliative care, music therapy can reduce pain (standardized mean difference: -0.44, 95% confidence interval: -0.60 to -0.27, P < 0.00001) and improve the quality of life (standardized mean difference: 0.61, 95% confidence interval: 0.41 to 0.82, P < 0.00001) in terminally ill patients. In addition, anxiety, depression, and emotional function are improved as well. However, no significant differences were found in the patient's physical status, fatigue, and social function., Conclusion: This meta-analysis study demonstrated that music therapy served as an effective intervention to alleviate pain and psychological symptoms of terminally ill patients. However, considering the limitation of the quantity of the studies included, these results would need to be further confirmed., (Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Feasibility of dignity therapy (DT) is well established in palliative care. Evidence of its efficacy, however, has been inconsistent and may stem from DT's primary effects differing from the outcomes measured in previous studies. We proposed that DT effects were in the spiritual domain and created a new outcome measure, Dignity Impact Scale (DIS), from items previously used in a large randomized controlled trial (RCT)., Objective: The purpose of this secondary analysis study was to examine properties of a new measure of dignity impact., Design: Using the DIS, we conducted reanalysis of posttest data from a large 3-arm, multi-site RCT study., Setting/participants: Participants were receiving hospice/palliative care (n = 326, 50.6% female, mean age = 65.1 years, 89.3% white, all with a terminal illness with 6 months or less life expectancy). They had been randomized to standard palliative care (n = 111), client-centered care (n = 107), or DT (n = 108)., Measurement: The 7-item DIS was derived from selected items in a posttest DT Patient Feedback Questionnaire. The DIS had strong internal consistency (α = 0.85)., Results: The DT group mean DIS score (21.4 ± 5.0) was significantly higher than the usual care group mean score (17.7 ± 5.5; t = 5.2, df = 216, P < .001) and a client-centered intervention group mean score (17.9 ± 4.9; t = 5.2, df = 213, P < .001)., Conclusion: We found that, compared to both other groups, patients who received DT reported significantly higher DIS ratings, which is consistent with the DT focus on meaning-making, preparation for death, and life completion tasks. We propose that the DIS be used as the primary outcome measure in evaluating the effects of DT.

The genesis of dyspnea involves the activation of several mechanisms that are mediated and perceived depending on previous experiences, values, emotions, and beliefs. Breathlessness may become unbearable, especially in patients who are terminally ill, whether afflicted by respiratory-, cardiac-, or cancer-related disorders, because of a final stage of a chronic process, an acute event, or both. Compared with pain, palliation of dyspnea has received relatively little attention in clinical practice and the medical literature. This is particularly true when the breathlessness is associated with acute respiratory failure because most of the studies on pharmacologic and nonpharmacologic treatments of respiratory distress have excluded such patients. Assessments of the quality of dying for patients in an ICU consistently show that few patients are considered by family members to breathe comfortably at the end of their life. This review focuses on the management of dyspnea in patients with advanced terminal illness, summarizing clinical trial evidence on pharmacologic and nonpharmacologic interventions available for these patients., (Copyright © 2018 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.)

Objectives: Although many well-known poems consider illness, loss and bereavement, medicine tends to view poetry more as an extracurricular than as a mainstream pursuit. Within palliative care, however, there has been a long-standing interest in how poetry may help patients and health professionals find meaning, solace and enjoyment. The objective of this paper is to identify the different ways in which poetry has been used in palliative care and reflect on their further potential for education, practice and research., Methods: A narrative review approach was used, drawing on searches of the academic literature through Medline and on professional, policy and poetry websites to identify themes for using poetry in palliative care., Results: I identified four themes for using poetry in palliative care. These concerned (1) leadership, (2) developing organisational culture, (3) the training of health professionals and (4) the support of people with serious illness or nearing the end of life. The academic literature was mostly made up of practitioner perspectives, case examples or conceptual pieces on poetry therapy. Patients' accounts were rare but suggested poetry can help some people express powerful thoughts and emotions, create something new and feel part of a community., Conclusion: Poetry is one way in which many people, including patients and palliative care professionals, may seek meaning from and make sense of serious illnesses and losses towards the end of life. It may have untapped potential for developing person-centred organisations, training health professionals, supporting patients and for promoting public engagement in palliative care., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Purpose: The understanding of patients with cancer of their condition and their wishes regarding care as they approach end of life (EoL) have been studied more in high-income countries than in low- and middle-income countries (LMICs)., Patients and Methods: Data were analyzed from a cohort study (N = 221) of patients with advanced cancer who were recruited from a palliative care center in Soweto, South Africa (LMIC), between May 2016 and June 2017. Patients were asked about their understanding of their illness, estimated life expectancy, EoL care communication, and EoL care preferences., Results: Only 13 patients (5.9%) acknowledged that they were terminally ill; nine patients (4.1%) estimated accurately that they had months, not years, left to live. A total of 216 patients (97.7%) reported that they had not had an EoL care discussion with their physician, and 170 patients (76.9%) did not want to know their prognosis even if the doctor knew it. Most patients preferred comfort care (72.9%; n = 161) to life-extending care (14.0%; n = 31), and did not want to be kept alive using extreme measures (80.5%; n = 178) or have their doctors do everything possible to extend their lives (78.3%; n = 173). Finally, 127 patients (57.5%) preferred to die at home, and 51 (23.1%) preferred to die in the hospital. Most patients (81.0%; n = 179) had funeral plans., Conclusion: South African patients demonstrated less awareness of the fact that they were terminally ill, were less likely to have discussed their prognosis with their doctor, and more strongly preferred comfort care to life-extending EoL care than US and other LMIC patients in prior research. These differences highlight the need for culturally appropriate, patient-centered EoL care for South African patients with advanced cancer as well as to determine individual preferences and needs in all EoL settings.

Background: Withdrawal of mechanical ventilation is an important, but rarely explored issue in Asia during end-of-life care. This study aimed to describe the clinical characteristics and survival outcomes of terminally ill patients undergoing withdrawal of mechanical ventilation in Taiwan., Methods: One-hundred-thirty-five terminally ill patients who had mechanical ventilation withdrawn between 2013 and 2016, from a medical center in Taiwan, were enrolled. Patients' clinical characteristics and survival outcomes after withdrawal of mechanical ventilation were analyzed., Results: The three most common diagnoses were organic brain lesion, advanced cancer, and newborn sequelae. The initiator of the withdrawal process was family, medical personnel, and patient him/herself. The median survival time was 45 min (95% confidence interval, 33-57 min) after the withdrawal of mechanical ventilation, and 102 patients (75.6%) died within one day after extubation. The median time from diagnosis of disease to receiving life-sustaining treatment and artificial ventilation support, receiving life-sustaining treatment and artificial ventilation support to "Withdrawal meeting," "Withdrawal meeting" to ventilator withdrawn, and ventilator withdrawn to death was 12.1 months, 19 days, 1 day, and 0 days, respectively. Patients with a diagnosis of advanced cancer and withdrawal initiation by the patients themselves had a significantly shorter time interval between receiving life-sustaining treatment and artificial ventilation support to "Withdrawal meeting" compared to those with non-cancer diseases and withdrawal initiation by family or medical personnel., Conclusion: This study is the first observational study to describe the patients' characteristics and elaborate on the survival outcome of withdrawal of mechanical ventilation in patients who are terminally ill in an Asian population. Understanding the clinical characteristics and survival outcomes of mechanical ventilation withdrawal might help medical personnel provide appropriate end-of-life care and help patients/families decide about the withdrawal process earlier., (Copyright © 2017. Published by Elsevier B.V.)

Aim: To identify effective treatments and risk factors associated with death rattle in adults at the end of life., Background: The presence of noisy, pooled respiratory tract secretions is among the most common symptoms in dying patients around the world. It is unknown if "death rattle" distresses patients, but it can distress relatives and clinicians. Treatments appear unsatisfactory, so prophylaxis would be ideal if possible., Design: Quantitative systematic review and narrative summary following Cochrane Collaboration guidelines., Data Sources: CINAHL, MEDLINE, Health Source Nursing and Web of Science were searched for international literature in any language published from 1993 - 2016 using MeSH headings and iterative interchangeable terms for "death rattle"., Review Methods: Randomized controlled trials were appraised using the Cochrane Collaboration's tool for assessing risk of bias. Non-randomized studies were assessed using ROBINS-I tool for assessing risk of bias in non-randomized studies of interventions. Instances of treatment and risk were extracted and relevant key findings extracted in line with Cochrane methods., Results: Five randomized trials and 23 non-randomized studies were analysed. No pharmacological or non-pharmacological treatment was found superior to placebo. There was a weak association between lung or brain metastases and presence of death rattle, but otherwise inconsistent empirical support for a range of potential risk factors., Conclusions: Clinicians have no clear evidence to follow in either treating death rattle or preventing it occurring. However, several risk factors look promising candidates for prospective analysis, so this review concludes with clear recommendations for further research., (© 2018 John Wiley & Sons Ltd.)

Background: Most patients in end-of-life with life-threatening diseases prefer to be cared for and die at home. Nevertheless, the majority die in hospitals. GPs have a pivotal role in providing end-of-life care at patients' home, and their involvement in the palliative trajectory enhances the patient's possibility to stay at home. The aim of this study was to develop and pilot-test an intervention consisting of continuing medical education (CME) and electronic decision support (EDS) to support end-of-life care in general practice., Methods: We developed an intervention in line with the first phases of the guidelines for complex interventions drawn up by the Medical Research Council. Phase 1 involved the development of the intervention including identification of key barriers to provision of end-of-life care for GPs and of facilitators of change. Furthermore the actual modelling of two components: CME meeting and EDS. Phase 2 focused on pilot-testing and intervention assessment by process evaluation., Results: In phase 1 lack of identification of patients at the end of life and limited palliative knowledge among GPs were identified as barriers. The CME meeting and the EDS were developed. The CME meeting was a four-hour educational meeting performed by GPs and specialists in palliative care. The EDS consisted of two parts: a pop-up window for each patient with palliative needs and a list of all patients with palliative needs in the practice. The pilot testing in phase 2 showed that the CME meeting was performed as intended and 120 (14%) of the GPs in the region attended. The EDS was integrated in existing electronic records but was shut down early for external reasons; 50 (5%) GPs signed up. The pilot-testing demonstrated a need to strengthen the implementation as attending rate was low in the current set-up., Conclusion: We developed a complex intervention to support GPs in providing end-of-life care. The pilot-test showed general acceptance of the CME meetings. The EDS was shut down early and needs further evaluation before examining the whole intervention in a larger study, where evaluation could be based on patient-related outcomes and impact on end-of-life care., Trial Registration: Clinicaltrials.gov ( NCT02050256 ) January 30, 2014.

Objectives: Music therapy (MT) holds a promising potential to meet emotional and existential needs in palliative care patients. The aim of the present pilot study was to assess the feasibility, acceptance and potential effectiveness of a novel MT intervention to improve life closure and spiritual well-being of terminally ill patients with cancer receiving palliative care., Methods: The 'Song of Life' (SOL) intervention was provided on two consecutive sessions containing a biographical interview and a live performance of a song with high biographical relevance to the patient in a lullaby style. Pre-to-post intervention assessments comprised brief self-report measures on life closure, well-being, stress, worry and pain., Results: 13 out of 15 patients were able to complete the protocol as intended. The chosen songs were associated with a close person, an important place or event or with a religious belief. The results showed medium-sized improvements with regard to life closure, well-being, relaxation, worry and pain., Conclusion: 'SOL' proved to be a feasible and highly accepted intervention for patients approaching the end of their lives. Further consideration with regard to the procedures and outcomes is necessary before implementation of a randomised trial., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Background: In palliative care, administration of opioids is often indispensable for pain treatment. Pain assessment may help recognize pain and guide treatment in non-communicative patients. In the Netherlands the Rotterdam Elderly Pain Observation Scale (REPOS) is recommended to this aim, but not yet validated. Therefore the objective of this study was to validate the REPOS in non-communicative or unconscious end-of-life patients., Methods: In this observational study, the primary researcher applied the REPOS, while both the researcher and a nurse applied the Numeric Rating Scale (NRS). If possible, the patient in question applied the NRS as well. The NRS scores were compared with the REPOS scores to determine concurrent validity. REPOS scores obtained before and after a pain-reducing intervention were analysed to establish the scale's sensitivity to change., Results: A total of 183 REPOS observations in 100 patients were analysed. Almost 90% of patients had an advanced malignancy; observations were done a median of 3 days (IQR 1 to 13) before death. Internal consistency of the REPOS was 0.73. The Pearson product moment correlation coefficient ranged from 0.64 to 0.80 between REPOS and NRS scores. REPOS scores declined with median 2 points (IQR 1 to 4) after a pain-reducing intervention (p < 0.001). Optimal sensitivity (0.81) and specificity (0.62) were found at cut-off score 3., Conclusions: This study demonstrates that the REPOS has promising psychometric properties for pain assessment in non-communicative end-of-life patients. Its application may be of additional value to relieve suffering, including pain, in palliative care.

Aims: Midazolam is the drug of choice for palliative sedation and is titrated to achieve the desired level of sedation. A previous pharmacokinetic (PK) study showed that variability between patients could be partly explained by renal function and inflammatory status. The goal of this study was to combine this PK information with pharmacodynamic (PD) data, to evaluate the variability in response to midazolam and to find clinically relevant covariates that may predict PD response., Method: A population PD analysis using nonlinear mixed effect models was performed with data from 43 terminally ill patients. PK profiles were predicted by a previously described PK model and depth of sedation was measured using the Ramsay sedation score. Patient and disease characteristics were evaluated as possible covariates. The final model was evaluated using a visual predictive check., Results: The effect of midazolam on the sedation level was best described by a differential odds model including a baseline probability, Emax model and interindividual variability on the overall effect. The EC50 value was 68.7 μg l -1 for a Ramsay score of 3-5 and 117.1 μg l -1 for a Ramsay score of 6. Comedication with haloperidol was the only significant covariate. The visual predictive check of the final model showed good model predictability., Conclusion: We were able to describe the clinical response to midazolam accurately. As expected, there was large variability in response to midazolam. The use of haloperidol was associated with a lower probability of sedation. This may be a result of confounding by indication, as haloperidol was used to treat delirium, and deliria has been linked to a more difficult sedation procedure., (© 2017 The Authors. British Journal of Clinical Pharmacology published by John Wiley & Sons Ltd on behalf of British Pharmacological Society.)

[Full article available at http://rimed.org/rimedicaljournal-2017-10.asp].

Awareness of factors affecting the place of death could improve communication between healthcare providers and patients and their families regarding patient preferences and the feasibility of dying in the preferred place.This study aimed to evaluate factors predicting home death among home palliative care recipients.This is a population-based study using a national representative sample retrieved from the National Health Insurance Research Database. Subjects receiving home palliative care, from 2010 to 2012, were analyzed to evaluate the association between a home death and various characteristics related to illness, individual, and health care utilization. A multiple-logistic regression model was used to assess the independent effect of various characteristics on the likelihood of a home death.The overall rate of a home death for home palliative care recipients was 43.6%. Age; gender; urbanization of the area where the patients lived; illness; the total number of home visits by all health care professionals; the number of home visits by nurses; utilization of nasogastric tube, endotracheal tube, or indwelling urinary catheter; the number of emergency department visits; and admission to intensive care unit in previous 1 year were not significantly associated with the risk of a home death. Physician home visits increased the likelihood of a home death. Compared with subjects without physician home visits (31.4%) those with 1 physician home visit (53.0%, adjusted odds ratio [AOR]: 3.23, 95% confidence interval [CI]: 1.93-5.42) and those with ≥2 physician home visits (43.9%, AOR: 2.23, 95% CI: 1.06-4.70) had higher likelihood of a home death. Compared with subjects with hospitalization 0 to 6 times in previous 1 year, those with hospitalization ≥7 times in previous 1 year (AOR: 0.57, 95% CI: 0.34-0.95) had lower likelihood of a home death.Among home palliative care recipients, physician home visits increased the likelihood of a home death. Hospitalizations ≥7 times in previous 1 year decreased the likelihood of a home death.

Context: Patients with terminal cancer experience refractory symptoms in the last days of life. Although palliative sedation (PS) is recommended for patients suffering unbearable symptoms with imminent death, it requires clear communication between physicians and patients/caregivers. Understanding the demands and perceptions of patients and caregivers in the end-of-life phase are needed for effective communication., Objective: To explore patient experiences regarding end-of-life status and PS., Methods: The study was performed between October and December, 2013 with eligible terminal cancer patients and their families in a non-religious, tertiary healthcare facility in Korea. Eligibility criteria were a hospitalized cancer patient with a life expectancy of less than three months and who had never experienced PS. Data were collected via face-to-face in-depth interviews and analyzed using the constant comparative method of qualitative analysis. Saturation was achieved after conducting interviews with 13 patients or care-giving family members., Results: Enrolled patients raised the following issues: 1) simultaneously harboring the hope of prolonging life and wishing for a peaceful death, 2) experiencing difficulties in having honest conversations with caregivers regarding death, 3) possessing insufficient knowledge and information regarding PS, and 4) hoping for the decision on PS to be made before suffering becomes too great., Conclusion: Terminally ill cancer patients and their caregivers expressed conflicting desires in hoping to prolong life and simultaneously wishing to experience a peaceful death. Improvements in the communications that occur among physicians, patients, and caregivers on the issues of prognosis and PS are needed., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Dignity therapy is psychotherapy to relieve psychological and existential distress in patients at the end of life. Little is known about its effect., Aim: To analyse the outcomes of dignity therapy in patients with advanced life-threatening diseases., Design: Systematic review was conducted. Three authors extracted data of the articles and evaluated quality using Critical Appraisal Skills Programme. Data were synthesized, considering study objectives., Data Sources: PubMed, CINAHL, Cochrane Library and PsycINFO. The years searched were 2002 (year of dignity therapy development) to January 2016. 'Dignity therapy' was used as search term. Studies with patients with advanced life-threatening diseases were included., Results: Of 121 studies, 28 were included. Quality of studies is high. Results were grouped into effectiveness, satisfaction, suitability and feasibility, and adaptability to different diseases and cultures. Two of five randomized control trials applied dignity therapy to patients with high levels of baseline psychological distress. One showed statistically significant decrease on patients' anxiety and depression scores over time. The other showed statistical decrease on anxiety scores pre-post dignity therapy, not on depression. Nonrandomized studies suggested statistically significant improvements in existential and psychosocial measurements. Patients, relatives and professionals perceived it improved end-of-life experience., Conclusion: Evidence suggests that dignity therapy is beneficial. One randomized controlled trial with patients with high levels of psychological distress shows DT efficacy in anxiety and depression scores. Other design studies report beneficial outcomes in terms of end-of-life experience. Further research should understand how dignity therapy functions to establish a means for measuring its impact and assessing whether high level of distress patients can benefit most from this therapy.

Purpose: Although previous research has indicated some recurrent themes and similarities between what patients from different cultures regard as a good death, the concept is complex and there is lack of studies from the Nordic countries. The aim of this study was to explore the perception of a good death in dying cancer patients in Sweden., Methods: Interviews were conducted with 66 adult patients with cancer in the palliative phase who were recruited from home care and hospital care. Interviews were analysed using qualitative content analysis., Results: Participants viewed death as a process. A good death was associated with living with the prospect of imminent death, preparing for death and dying comfortably, e.g., dying quickly, with independence, with minimised suffering and with social relations intact. Some were comforted by their belief that death is predetermined. Others felt uneasy as they considered death an end to existence. Past experiences of the death of others influenced participants' views of a good death., Conclusions: Healthcare staff caring for palliative patients should consider asking them to describe what they consider a good death in order to identify goals for care. Exploring patients' personal experience of death and dying can help address their fears as death approaches.

Aims: To establish preliminary evidence for the feasibility, acceptability, and utility of an abbreviated version of Meaning-Centered Psychotherapy tailored to the needs of palliative care patients in the final weeks or months of life., Background: Surprisingly, few mental health interventions have specifically targeted the psychological needs of palliative care patients, when physical comfort seems to take precedence over mental health and emotional needs. Yet the need for mental health services targeting these patients is clear, as one in three palliative care patients experience clinically significant depression and an equal proportion experience clinically significant anxiety., Design: This pilot study used an open-label design to assess the feasibility, acceptability, and perceived utility of Meaning-Centered Psychotherapy-palliative care, a brief intervention that focuses on enhancing meaning at the end of life., Setting/participants: A total of 12 patients admitted to a palliative care hospital for supportive care consented to participate in the study., Results: Of the 11 patients that began treatment (one patient died before the first session), 8 completed the three-session intervention. Patients expressed positive feedback about the structure, focus, and length of the intervention, but varied in precisely which elements they found most helpful., Conclusion: An abbreviated version of Meaning-Centered Psychotherapy tailored to the needs of palliative care patients (Meaning-Centered Psychotherapy-palliative care) appears to be feasible, acceptable, and has the potential to help patients better cope with the challenges inherent in confronting death and dying. Further research, with larger and more representative samples, is needed in order to clarify the strengths and weaknesses of this approach.

Objective: To assess the efficacy of active treatment targeted at underlying disease (TTD)/potentially curative treatments versus palliative care (PC) in improving overall survival (OS) in terminally ill patients., Design: We performed a systematic review and meta-analysis of randomised controlled trials (RCT). Methodological quality of included RCTs was assessed using the Cochrane risk of bias tool., Data Sources: Medline and Cochrane databases were searched, with no language restriction, from inception to 19 October 2016., Eligibility Criteria for Selecting Studies: Any RCT assessing the efficacy of any active TTD versus PC in adult patients with terminal illness with a prognosis of <6-month survival were eligible for inclusion., Results: Initial search identified 8252 citations of which 10 RCTs (15 comparisons, 1549 patients) met inclusion criteria. All RCTs included patients with cancer. OS was reported in 7 RCTs (8 comparisons, 1158 patients). The pooled results showed no statistically significant difference in OS between TTD and PC (HR (95% CI) 0.85 (0.71 to 1.02)). The heterogeneity between pooled studies was high (I 2 =62.1%). Overall rates of adverse events were higher in the TTD arm., Conclusions: Our systematic review of available RCTs in patients with terminal illness due to cancer shows that TTD compared with PC did not demonstrably impact OS and is associated with increased toxicity. The results provide assurance to physicians, patients and family that the patients' survival will not be compromised by referral to hospice with focus on PC., Competing Interests: Conflicts of Interest: None declared., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

Context: Radiation therapy (RT) is used with palliative intent in patients with advanced stage cancer. Prior studies, primarily in patients with poor performance status (PS), suggest that RT is associated with aggressive medical care, which may impact patients' quality of life near death (QoD) adversely., Objective: This study examines associations between RT use and patients' receipt of aggressive care and QoD based on patients' PS., Methods: This is a multi-institutional, prospective cohort study of patients with end-stage cancers (N = 312) who were identified as terminally ill at study enrollment. RT use (n = 24; 7.7%) and Eastern Cooperative Oncology Group (ECOG) PS were assessed at study entry (median = 3.8 months before death). Aggressive care near death was operationalized as use of mechanical ventilation and/or resuscitation in the last week of life. QoD was determined using validated caregiver ratings of patients' physical and mental distress in their final week., Results: RT use was associated with higher QoD (8/8, 100.0%, vs. 58/114, 50.9%; P = 0.006) among patients with good PS (ECOG = 1), more aggressive care near death (3/9, 33.3%, vs. 6/107, 5.6%; P = 0.020) among patients with moderate PS (ECOG = 2), and lower QoD (1/7, 14.3%, vs. 28/51, 54.9%; P = 0.046) among patients with poor PS (ECOG = 3)., Conclusions: Targeted use of RT in end-of-life cancer care may benefit patients with good PS, but its use may adversely affect patients with poorer PS. Decisions about RT use in this setting should consider likely end-of-life outcomes based on patients' current PS., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Many 'routine' interventions performed in hospital rooms have repercussions for the comfort of the patient, and the decision to perform them should depend on whether the patient is identified as in a terminal phase. The aim of this study is to analyse the health interventions performed and decisions made in the last days of life in patients with advanced oncological and non-oncological illness to ascertain whether identifying the patient's terminal illness situation has any effect on these decisions., Methods: Retrospective study of the clinical histories of deceased patients in four hospitals in Granada (Spain) in 2010. Clinical histories corresponding to the last three months of the patient's life were reviewed., Results: A total of 202 clinical histories were reviewed, 60 % of which were those of non-oncology patients. Opioid prescriptions (58.4 %), palliative sedation (35.1 %) and Do Not Resuscitate (DNR) orders (34.7 %) were the decisions most often reflected in the histories, and differences in these decisions were found between patients registered as terminal and those who were not registered as terminal. The most frequent interventions in the final 14 days and 48 h were parenteral hydration (96-83 %), peripheral venous catheter (90.1-82 %) and oxygen therapy (81.2-70.5 %). There were statistically significant differences between the patients who were registered as terminal and those not registered as terminal in the number of interventions applied in the final 14 days and 48 h (p = 0.01-p = 0.00) and in many of the described treatments., Conclusion: The recognition of a patient's terminal status in the clinical history conditions the decisions that are made and is generally associated with a lower number of interventions.

Increasing evidence demonstrates the benefits of early end-of-life care discussions with patients with life-threatening illness and their families. However, these conversations often do not occur. This review explores some of the many barriers faced by clinicians in relation to end-of-life care discussions, including prognostic uncertainty, fear of causing distress, navigating patient readiness and feeling unprepared for these conversations. The value of core clinical communication skills, potential strategies for improvement and areas for future research are also discussed. It is essential that clinicians offer patients facing life-threatening illness, and those close to them, the opportunity to discuss end-of-life issues in line with their information and decision-making preferences. With a growing and ageing global population, supporting both generalist and specialist providers of palliative care in this task is key. With careful preparation, fears of undertaking these discussions should not be a barrier to initiating them., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Purpose: Different countries have various decision-making practices, which are formalized according to laws, rules, traditions, religious beliefs, and ethical views of different cultural backgrounds. We investigated the characteristics and factors associated with the decision-making details in terminally ill cancer patients in a tertiary cancer center in Shanghai, China., Method: A single center, retrospective study was performed among advanced cancer patients who died between March 2007 and December 2013 in ward at Palliative Care Unit, Fudan University Shanghai Cancer Center., Results: Of 436 patients' end-of-life (EOL) discussions, 424 (97.2 %) occurred between family caregivers and physicians. The main decision-maker was in the following order: spouse (45.6 %), offsprings (44.3 %), parents (3.2 %), son-/daughter-in-law (1.8 %), and relatives (1.4 %). Two hundred twenty-one (47.3 %) patients received at least one of six life-sustaining treatments. One hundred eighty-four (40.4 %) patients continued artificial nutrition and hydration (ANH) until death. Cardiopulmonary resuscitation (CPR) was performed in 26 patients (6.0 %). Two hundred fourteen (49.1 %) patients received vasopressors before death. Only two patients received mechanical ventilation and only one patient received tracheostomy. The median time interval since the decision made till death was 20.17 h (95 % CI = 18.94-21.40, range 4.3 to 70.2 h). Patients who were older than 65 years old were less likely to undergo an intensive procedure (AOR = 0.559, 95 % CI = 0.367-0.852, p = 0.007). Patients living in urban settings (AOR = 2.177, 95 % CI = 1.398-3.390, p = 0.001) were more likely to undergo an intensive procedure in the EOL period., Conclusions: This study reflected some Chinese characteristics for decision-making at the end of life among advanced cancer patients. More prospective studies focused on specific EOL issues are required to improve the quality of EOL care.

The article describes my experience - and the lessons learned - with a terminally ill patient in 1977 as a clinical pastoral education chaplain intern., (© The Author(s) 2016.)

Introduction: Numerous large observational studies have shown an increased risk of mortality in elderly users of conventional antipsychotics. Health authorities have warned against use of these drugs. However, terminal illness is a potentially strong confounder of the observational findings. So, the objective of this study was to systematically assess whether terminal illness may have biased the observational association between conventional antipsychotics and risk of mortality in elderly patients., Methods: Studies were searched in PubMed, CINAHL, Embase, the references of selected studies and articles referring to selected studies (Web of Science). Inclusion criteria were (i) observational studies that estimated (ii) the risk of all-cause mortality in (iii) new elderly users of (iv) conventional antipsychotics compared with atypical antipsychotics or no use. Two investigators assessed the characteristics of the exposure and reference groups, main results, measured confounders and methods used to adjust for unmeasured confounders., Results: We identified 21 studies. All studies were based on administrative medical and pharmaceutical databases. Sicker and older patients received conventional antipsychotics more often than new antipsychotics. The risk of dying was especially high in the first month of use, and when haloperidol was administered per injection or in high doses. Terminal illness was not measured in any study. Instrumental variables that were used were also confounded by terminal illness., Conclusions: We conclude that terminal illness has not been adjusted for in observational studies that reported an increased risk of mortality risk in elderly users of conventional antipsychotics. As the validity of the evidence is questionable, so is the warning based on it., (Copyright © 2015 John Wiley & Sons, Ltd.)

Context: The stability of life-sustaining treatment (LST) preferences at end of life (EOL) has been established. However, few studies have assessed preferences more than two times. Furthermore, associations of LST preferences with modifiable variables of accurate prognostic awareness, physician-patient EOL care discussions, and depressive symptoms have been investigated in cross-sectional studies only., Objectives: To explore longitudinal changes in LST preferences and their associations with accurate prognostic awareness, physician-patient EOL care discussions, and depressive symptoms in terminally ill cancer patients' last year., Methods: LST preferences (cardiopulmonary resuscitation, intensive care unit [ICU] care, intubation, and mechanical ventilation) were measured approximately every two weeks. Changes in LST preferences and their associations with independent variables were examined by hierarchical generalized linear modeling with logistic regression., Results: Participants (n = 249) predominantly rejected cardiopulmonary resuscitation, ICU care, intubation, and mechanical ventilation at EOL without significant changes as death approached. Patients with inaccurate prognostic awareness were significantly more likely than those with accurate understanding to prefer ICU care, intubation, and mechanical ventilation than to reject these LSTs. Patients with more severe depressive symptoms were less likely to prefer ICU care and to be undecided about wanting ICU care and mechanical ventilation than to reject such LSTs. LST preferences were not associated with physician-patient EOL care discussions, which were rare in our sample., Conclusion: LST preferences are stable in cancer patients' last year. Facilitating accurate prognostic awareness and providing adequate psychological support may counteract the increasing trend for aggressive EOL care and minimize emotional distress during EOL care decisions., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Unscheduled acute hospital admissions and subsequent deaths in hospitals of patients considered palliative are increasing, despite many patients' preference to die at home. A large proportion of these patients are admitted via acute medical units or emergency departments. The integration of primary and secondary care within Wales should enhance the delivery of end-of-life care at home but unscheduled admission for patients with palliative care needs remains prevalent. The aim of our study was to explore the characteristics amongst patients who die shortly after unscheduled hospital admission. A retrospective, observational study was conducted in all unscheduled admissions at end-of-life at a single health board in South Wales, UK over a period of one month. The result showed that 47% of patients who died within 48hrs of unscheduled admission are considered to be palliative. The majority of these patients were admitted via 999 ambulances and out of normal working hours (65%). They were elderly (median age 80) and had a poor performance status (78%). Over 1/3 (39%) were admitted from a nursing or residential home. Less than a quarter (22%) had an advance care plan in place.

Background: Changes over time in preferences for life-sustaining treatments (LSTs) at end of life (EOL) in different patient cohorts are not well established, nor is the concept that LST preferences represent more than 2 groups (uniformly prefer/not prefer)., Purpose: The purpose of this study was to explore heterogeneity and changes in patterns of LST preferences among 2 independent cohorts of terminally ill patients with cancer recruited a decade apart., Methods: Preferences for cardiopulmonary resuscitation, intensive care unit care, cardiac massage, intubation with mechanical ventilation, intravenous nutritional support, nasogastric tube feeding, and dialysis were surveyed among 2,187 and 2,166 patients in 2003-2004 and 2011-2012, respectively. Patterns and changes in LST preferences were examined by multigroup latent class analysis., Results: We identified 7 preference classes: uniformly preferring, uniformly rejecting, uniformly uncertain, favoring nutritional support but rejecting other treatments, favoring nutritional support but uncertain about other treatments, favoring intravenous nutritional support with mixed rejection of or uncertainty about other treatments, and preferring LSTs except intubation with mechanical ventilation. Probability of class membership decreased significantly over time for the uniformly preferring class (15.26%-8.71%); remained largely unchanged for the classes of uniformly rejecting (41.71%-40.54%) and uniformly uncertain (9.10%-10.47%), and favoring nutritional support but rejecting (20.68%-21.91%) or uncertain about (7.02%-5.47%) other treatments, and increased significantly for the other 2 classes. The LST preferences of Taiwanese terminally ill patients with cancer are not a homogeneous construct and shifted toward less-aggressive treatments over the past decade., Conclusions: Identifying LST preference patterns and tailoring interventions to the unique needs of patients in each LST preference class may lead to the provision of less-aggressive EOL care., (Copyright © 2015 by the National Comprehensive Cancer Network.)

Purpose: This study evaluates a pilot implementation of the Liverpool Care Pathway (LCP), a clinical tool used to guide the care of dying patients in the last days of life, on the end-of-life care for dying patients in three regions in rural Australia., Methods: The LCP was implemented at 13 participating sites: nine hospitals (general wards), one community-based palliative care service, and three in-hospital palliative care units. To evaluate the implementation of the LCP, 415 eligible patient records were examined: 223 pre-implementation and 192 post-implementation (116 on the LCP and 76 receiving usual care). The primary analysis compared all patients pre-implementation of the LCP versus all patients post-implementation., Results: Increases were found post-implementation for communication with other health professionals and with patients or family (pre-69 %, post-87 %; p ≤ 0.000), use of palliative medications (pre-87 %, post-98 %; p ≤ 0.000) and frequency of symptom assessments (pre-66 %, post-82 %; p ≤ 0.000). Fewer blood and radiological investigations were conducted and venous access devices used in the post-implementation groups than in the pre-implementation period., Conclusions: This study suggests that when rigorously implemented, the LCP improves important components of end-of-life care for dying patients and their families.

Objective: There is scarce research on the short-term fluctuations in end-of-life (EoL) care planning for seriously ill patients. The aim of our study was to investigate the stability of preferences regarding treatment in an intensive care unit (ICU) and identify the factors associated with changes in preferences in terms of quality of life (QoL)., Method: A prospective examination on preference changes for ICU care in 141 terminal cancer patients was conducted. Patients were categorized according to their change in preference during the final two months of their lives into four categories: (1) the keep-accept group, (2) the keep-reject group, (3) the change to accept group, and (4) the change to reject group. Using multiple logistic analyses, we explored the association between patient demographics, health-related QoL, and changes in ICU preference., Results: The overall stability of ICU preferences near the end of life was 66.7% (κ = 0.33, p < 0.001). Married patients were more likely to change their preference regarding ICU care [adjusted odds ratio (aOR) toward accept 12.35, p = 0.021; aOR toward reject 10.56, p = 0.020] than unmarried patients. Patients with stable physical function tended to accept ICU care (aOR = 5.05, p = 0.023), whereas those with poor performance (aOR = 5.32, p = 0.018), worsened QoL (aOR = 8.34, p = 0.007), or non-aggravated fatigue (aOR = 8.36, p = 0.006) were more likely to not accept ICU care., Significance of Results: The attitudes of terminally ill cancer patients regarding ICU care at the end of life were not stable over time, and changes in their QoL were associated with a tendency to change their preferences about ICU care. Attention should thus be paid to patients' QoL changes to improve medical decision making with regard to EoL care.

Background: Early patient-physician care planning discussions may influence the intensity of end-of-life (EOL) care received by veterans with advanced cancer., Objective: The study objective was to evaluate the association between medical record documentation of patient-physician care planning discussions and intensity of EOL care among veterans with advanced cancer., Methods: This was a retrospective cohort study. Subjects were 665 veteran decedents diagnosed with stage IV colorectal, lung, or pancreatic cancer in 2008, and followed till death or the end of the study period in 2011. We estimated the effect of patient-physician care planning discussions documented within one month of metastatic diagnosis on the intensity of EOL care measured by receipt of acute care, intensive interventions, chemotherapy, and hospice care, using multivariate logistic regression models., Results: Veterans in our study were predominantly male (97.1%), white (74.7%), with an average age at diagnosis of 66.4 years. Approximately 31% received some acute care, 9.3% received some intensive intervention, and 6.5% had a new chemotherapy regimen initiated in the last month of life. Approximately 41% of decedents received no hospice or were admitted within three days of death. Almost half (46.8%) had documentation of a care planning discussion within the first month after diagnosis and those who did were significantly less likely to receive acute care at EOL (OR: 0.67; p=0.025). Documented discussions were not significantly associated with intensive interventions, chemotherapy, or hospice care., Conclusion: Early care planning discussions are associated with lower rates of acute care use at the EOL in a system with already low rates of intensive EOL care.

Background: Some patients with advanced and progressive diseases express a desire to hasten death., Aim: This study evaluated the motivations of patients expressing such a desire in a country with prohibitive legislation on euthanasia and physician-assisted suicide., Design: A modified form of Grounded Theory was used., Setting/participants: Patients from the departments of palliative medicine in three hospitals in Germany were recruited when they had made a statement or request to hasten death. Participants were interviewed face to face. Recruitment was stopped with 12 participants because of data saturation., Results: Thematic analysis revealed three main motivational themes: self-determination, agony, and time. Expectations toward health professionals, attitudes toward death, and secureness related to the end of life were additional main themes emerging from the analysis., Conclusions: The desire to hasten death may be used as an extreme coping strategy to maintain control against anticipated agony. Patients expected health professionals to listen to and respect their experiences. Emerging hypotheses included the following: (a) patients try to balance life time and anticipated agony, and the perception of time is distressing in this balancing act; (b) anticipated images of agony and suffering in the dying process occur frequently and are experienced by patients as intrusive; (c) patients expressing a desire to hasten death are in need of more information about the dying process; and (d) patients wanted their caregivers to listen to and respect their wish to hasten death, and they did not expect the caregivers to understand this as an order to actually hasten their death., (© The Author(s) 2015.)

As currently practiced, the use of continuous sedation until death (CSD) is controlled by clinicians in a way that may deny patients a key choice in controlling their dying process. Ethical guidelines from the American Medical Association and the American Academy of Pain Medicine describe CSD as a "last resort," and a position statement from the American Academy of Hospice and Palliative Medicine describe it as "an intervention reserved for extreme situations." Accordingly, patients must progress to unremitting pain and suffering and reach a last-resort stage before the option to pursue CSD is considered. Alternatively, we present and defend a new guideline in which decisionally capable, terminally ill patients who have a life expectancy of less than six months may request CSD before being subjected to the refractory suffering of a treatment of "last resort.", (Copyright 2015 The Journal of Clinical Ethics. All rights reserved.)

Objective: To describe the use of opioids and sedatives to pediatric patients dying in the hospital in the 2 weeks preceding death., Study Design: We conducted a retrospective study on opioid and sedation medication exposure among children who die in hospitals in the US by using large administrative data sources. We described patterns of exposure to these medications for deceased inpatients (<21 years of age) between 2007 and 2011 (n = 37,459) and factors associated with the exposure. Multivariable logistic regression models were used to estimate the ORs., Results: Overall, 74% patients were exposed to opioids or sedatives in the 14 days before death. Among patients with 6 or more hospital days before death, the daily exposure rate ranged from 73% (the sixth day before death) to 89% (the day of death). The most commonly used medications were fentanyl (52%), midazolam (44%), and morphine (40%). Older age (ORs 1.6-3.7), black race (ORs 0.8), longer hospital stay (ORs 6.6-9.3), receiving medical interventions (including mechanical ventilation, surgery, and stay in the intensive care unit, ORs 1.7-2.6), having comorbidities (ORs 1.7-2.4), and being hospitalized in children's hospitals (ORs 4.0-4.5) were associated with exposure of opioid and sedation medication on adjusted analysis., Conclusion: Although most pediatric patients terminally hospitalized are exposed to opioid and sedation medication, some patients do not receive such medications before death. Given that patient and hospital characteristics were associated with opioid/sedative exposure, these findings suggest areas of potential quality improvement and further research., (Copyright © 2015 Elsevier Inc. All rights reserved.)

Background: Nearly 2000 children die due to a malignancy in the United States annually. Emerging data suggest that home is the desired location of care for children with cancer at end of life. However, one obstacle to enrollment in a pediatric palliative care (PPC) home care program may be fear that distressing symptoms at end of life cannot be adequately managed outside the hospital., Objective: To compare the symptom distress and quality-of-life experience for children who received concurrent end-of-life care from a PPC home care program (PPC/Oncology) with that of those who died without exposure to the PPC program (Oncology)., Methods: We conducted a retrospective survey study of a cohort of bereaved parents of children who died of cancer between 2002 and 2008 at a U.S. tertiary pediatric institution., Results: Sixty bereaved parents were surveyed (50% PPC/Oncology). Prevalence of constipation and high distress from fatigue were more common in the PPC/Oncology group; other distressing symptoms were similar between groups, showing room for improvement. Children who received PPC/Oncology were significantly more likely to have fun (70% versus 45%), to experience events that added meaning to life (89% versus 63%), and to die at home (93% versus 20%)., Conclusions: This is the first North American study to assess outcomes among children with cancer who received concurrent oncology and palliative home care compared with those who received oncology care alone. Symptom distress experiences were similar in groups. However, children enrolled in a PPC home care program appear to have improved quality of life and are more likely to die at home.