Search

Background: Despite pain control being a top priority in end-of-life care, pain continues to be a troublesome symptom and comprehensive data on pain prevalence and pain relief in patients with different diagnoses are scarce., Methods: The Swedish Register of Palliative Care (SRPC) was used to retrieve data from 2011 to 2022 about pain during the last week of life. Data were collected regarding occurrence of pain, whether pain was relieved and occurrence of severe pain, to examine if pain differed between patients with cancer, heart failure, chronic obstructive pulmonary disease (COPD) and dementia. Binary logistic regression models adjusted for sex and age were used., Results: A total of 315 000 patients were included in the study. Pain during the last week of life was more commonly seen in cancer (81%) than in dementia (69%), heart failure (68%) or COPD (57%), also when controlled for age and sex, p < 0.001. Severe forms of pain were registered in 35% in patients with cancer, and in 17-21% in non-cancer patients. Complete pain relief (regardless of pain intensity) was achieved in 73-87% of those who experienced pain, depending on diagnosis. The proportion of patients with complete or partial pain relief was 99.8% for the whole group., Conclusions: The occurrence of pain, including severe pain, was less common in patients with heart failure, COPD or dementia, compared to patients with cancer. Compared with cancer, pain was more often fully relieved for patients with dementia, but less often in heart failure and COPD. As severe pain was seen in about a third of the cancer patients, the study still underlines the need for better pain management in the imminently dying., Trial Registration: No trial registration was made as all patients were deceased and all data were retrieved from The Swedish Register of Palliative Care database., (© 2024. The Author(s).)

Background: Evidence exists for the use of palliative sedation for people approaching the last days of life with refractory and intolerable symptoms. It is a third-line intervention that deliberately lowers the conscious state to relieve intolerable and refractory symptoms. This level of intervention is not routinely used in primary care, and there is a lack of guidelines for palliative sedation in this context., Objective: This article provides some key information about palliative sedation and global issues faced by all individuals involved. A tertiary centre case study is used to illustrate the key points. Given this form of therapy may be required for palliative patients in the community, another aim of this article is to provide an overview for primary care practitioners to raise their awareness of such therapy and the issues related to it., Discussion: While palliative sedation has been regarded as 'controversial' in early palliative care literature, there has been an increased effort to formulate standardised guidelines to define and ethically justify this procedure.

Objectives: The aim of this study was to investigate symptom prevalence, symptom relief, and palliative care indicators during the last week of life, comparing them for patients with motor neuron disease (MND), central nervous system tumors (CNS tumor), and other neurological diseases (OND)., Material & Methods: Data were obtained from the Swedish Register for Palliative Care, which documents care during the last week of life. Logistic regression was used to compare patients with MND (n = 419), CNS tumor (n = 799), and OND (n = 1,407) as the cause of death., Results: The most prevalent symptoms for all neurological disease groups were pain (52.7% to 72.2%) and rattles (58.1% to 65.6%). Compared to MND and OND, patients with CNS tumors were more likely to have totally relieved pain, shortness of breath, rattles, and anxiety. They were also more likely to have their pain assessed with a validated tool; to receive symptom treatment for anxiety, nausea, rattles, and pain; to have had family members receive end-of-life discussions; to have someone present at death; and to have had their family members offered bereavement support. Both patients with CNS tumor and MND were more likely than patients with OND to receive consultation with a pain unit and to have had end-of-life discussions., Conclusions: The study reveals high symptom burden and differences in palliative care between the groups during the last week of life. There is a need for person-centered care planning based on a palliative approach, focused on improving symptom assessments, relief, and end-of-life conversations., (© 2019 The Authors. Brain and Behavior published by Wiley Periodicals, Inc.)

There is a growing number of people who need access to high-quality endof-life care in the home setting. This requires timely assessments of needs, ensuring good symptom management and recognising the roles undertaken by carers. For some patients, a range of medications may need to be put in place to relieve end-of-life symptoms, using 'anticipatory prescribing'. District nurses must ensure that they acknowledge the patient's voiced preferences and be mindful of the safety issues that arise with the supply of controlled drugs in the home. This article highlights the challenges faced by district nurses providing or dealing with anticipatory prescribing during end-of-life care.

Objective: To investigate whether and when palliative sedation was discussed with hospice patients with cancer and/or with their families and factors associated with patient involvement in such discussions., Methods: Medical records of all patients with cancer who died in an Italian hospice in 2014-2015 (N = 326) were retrospectively reviewed. Multiple logistic regression was used to assess the association between patients' characteristics and palliative sedation discussion with the patient versus palliative sedation discussion only with the family., Results: Palliative sedation discussion was in 51.8% of the cases reported in the record. In most of the cases, discussions were conducted pre-emptively. Palliative sedation was used for 67.3% of the patients who were involved in the discussion and for 32.7% of the patients when the topic was discussed only with the family. Patient involvement in palliative sedation discussions was negatively associated with living with others (OR 0.34, CI 0.15; 0.77), and positively associated with awareness of prognosis (OR 5.61, CI 2.19; 14.33) and days of survival after hospice admission (OR 3.41, CI 1.55; 7.51)., Conclusion: Policies encouraging patient involvement in palliative care decision-making, including palliative sedation, should be implemented and their adoption should be carefully examined. Prospective studies addressing this topic are needed., (© 2019 John Wiley & Sons Ltd.)

Background: Observational pain tools (OPTs) are widely recommended in health care policies, clinical guidelines, and recommendations for pain assessment and management. However, it is unclear whether and how these tools are used for patients with advanced dementia approaching the end of life., Aim: To explore hospice, secondary, and primary care physicians' and nurses' use of OPTs with patients dying with advanced dementia and their perspectives on practice development and training needs., Methods: Twenty-three physicians and 24 nurses with experience of caring for people dying with advanced dementia were recruited from primary care surgeries (n = 5), hospitals (n = 6), hospices (n = 4), and nursing homes (n = 10). Semistructured, face-to-face interviews were conducted. Interviews were digitally recorded, transcribed verbatim, and thematic analysis applied to identify core themes., Results: Three key themes emerged: (1) use of OPTs in this vulnerable patient population, (2) barriers to the use of OPTs and lack of perceived "added value", and (3) perspectives on practice development and training in pain assessment in advanced dementia at end of life. Just over one-quarter of participants (n = 13) routinely used OPTs. Reasons for nonuse included perceived limitations of such tools, difficulties with their use and integration with existing practice, and lack of perceived added value. Most participants strongly emphasised a need for ongoing training and development which facilitated transfer of knowledge and multidisciplinary skills across professions and specialties., Conclusions: Health professionals require ongoing support in developing and integrating change to existing pain assessment protocols and approaches. These findings have important implications for health education, practice, and policy., (© 2018 John Wiley & Sons, Ltd.)

Palliative Sedation: Comments on a controversial topic Abstract. Palliative sedation (PS) is an accepted medical practice for terminally ill patients. It intends the alleviation of unbearable suffering by intentionally lowering the level of consciousness. In contrast to physician assisted suicide and euthanasia, palliative sedation aims to relieve burdensome symptoms with no intention of hastening death. PC can be applied as "intermittent palliative sedation" or "continuous (deep) sedation until death". Most ethical controversies are related to the latter form of PS: 1: Is existential or psychosocial suffering a possible indication for PS? 2: What is the earliest possible time point to start PS? 3: The withdrawal or withholding of artificial nutrition and hydration during PS. A critical reflection of these ethical controversial aspects within the treatment team is highly desirable. However, the patient's well-being and the respect for the patient's decisions that are based on experiences which are made only by him or her, must remain the guiding principle for medical actions.

Background: Pain assessment and management in advanced and end-stage dementia are challenging; patients are at risk of under-diagnosis, under-assessment and under-treatment. Previous research has highlighted the importance of needs-driven training and development in this area for physicians, nurses and healthcare assistants (HCAs) across specialties, disciplines and care settings. This study used teleconferencing technology to connect healthcare professionals across multiple settings and disciplines in real-time clinics, based on the Project ECHO© model. This paper reports the evaluation of the clinics by physicians, nurses and HCAs, including their knowledge and self-efficacy in pain assessment and management for patients with advanced and end-stage dementia., Methods: A mixed method evaluation comprising quantitative survey of self-reported knowledge and self-efficacy pre- and post-ECHO clinic participation, and qualitative exploration of experiences of the clinics using focus group interviews. A census approach to sampling was undertaken. Pre- and post-ECHO evaluations were administered electronically using Survey Monkey software. Mann-Whitney U tests were used to explore differences in knowledge and self-efficacy scores pre- and post-ECHO clinic participation. Statistical significance was set a-priori at p = 0.05. Focus groups were video- and audio-recorded, transcribed verbatim and analysed using Braun & Clarke's model of thematic analysis., Results: Eighteen healthcare professionals [HCPs] (physicians [n = 7], nurses [n = 10], HCA [n = 1]) and twenty HCPs (physicians [n = 10], nurses [n = 10]) completed pre- and post-ECHO evaluations respectively, reporting improvements in knowledge and self-efficacy on participation in ECHO clinics and perceived utility of the clinics. Seven HCPs (physicians [n = 2], nurses [n = 5]) participated in two focus groups. Four themes emerged: knowledge and skills development and dissemination; protected time; areas for improvement; and the future of ECHO., Conclusions: Telementoring clinics for HCP education and training in pain assessment and management in advanced and end-stage dementia demonstrate a positive impact on knowledge and self-efficacy of HCPs and highlight the value of a cross-specialty network of practice which spans across disciplines/HCP types, care settings and geographical areas. Further development of ECHO services in this and in other clinical areas, shows significant potential to support delivery of high-quality care to complex patient populations.

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.

Background: Pain affects most people approaching the end of life and can be severe for some. Opioid analgesia is effective, but evidence is needed about how best to support patients in managing these medicines., Objectives: To develop a self-management support toolkit (SMST) and delivery strategy and to test the feasibility of evaluating this intervention in a future definitive trial., Design: Phase I - evidence synthesis and qualitative interviews with patients and carers. Phase II - qualitative semistructured focus groups and interviews with patients, carers and specialist palliative care health professionals. Phase III - multicentre mixed-methods single-arm pre-post observational feasibility study., Participants: Phase I - six patients and carers. Phase II - 15 patients, four carers and 19 professionals. Phase III - 19 patients recruited to intervention that experienced pain, living at home and were treated with strong opioid analgesia. Process evaluation interviews with 13 patients, seven carers and 11 study nurses., Intervention: Self-Management of Analgesia and Related Treatments at the end of life (SMART) intervention comprising a SMST and a four-step educational delivery approach by clinical nurse specialists in palliative care over 6 weeks., Main Outcome Measures: Recruitment rate, treatment fidelity, treatment acceptability, patient-reported outcomes (such as scores on the Brief Pain Inventory, Self-Efficacy for Managing Chronic Disease Scale, Edmonton Symptom Assessment Scale, EuroQol-5 Dimensions, Satisfaction with Information about Medicines Scale, and feasibility of collecting data on health-care resource use for economic evaluation)., Results: Phase I - key themes on supported self-management were identified from evidence synthesis and qualitative interviews. Phase II - the SMST was developed and refined. The delivery approach was nested within a nurse-patient consultation. Phase III - intervention was delivered to 17 (89%) patients, follow-up data at 6 weeks were available on 15 patients. Overall, the intervention was viewed as acceptable and valued. Descriptive analysis of patient-reported outcomes suggested that interference from pain and self-efficacy were likely to be candidates for primary outcomes in a future trial. No adverse events related to the intervention were reported. The health economic analysis suggested that SMART could be cost-effective. We identified key limitations and considerations for a future trial: improve recruitment through widening eligibility criteria, refine the SMST resources content, enhance fidelity of intervention delivery, secure research nurse support at recruiting sites, refine trial procedures (including withdrawal process and data collection frequency), and consider a cluster randomised design with nurse as cluster unit., Limitations: (1) The recruitment rate was lower than anticipated. (2) The content of the intervention was focused on strong opioids only. (3) The fidelity of intervention delivery was limited by the need for ongoing training and support. (4) Recruitment sites where clinical research nurse support was not secured had lower recruitment rates. (5) The process for recording withdrawal was not sufficiently detailed. (6) The number of follow-up visits was considered burdensome for some participants. (7) The feasibility trial did not have a control arm or assess randomisation processes., Conclusions: A future randomised controlled trial is feasible and acceptable., Study and Trial Registration: This study is registered as PROSPERO CRD42014013572; Current Controlled Trials ISRCTN35327119; and National Institute for Health Research (NIHR) Portfolio registration 162114., Funding: The NIHR Health Technology Assessment programme.

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

Some patients are hesitant to disclose when they are experiencing pain. However, the reasons for this, such as stoicism and concern about being a bother to others, are poorly understood. If patient pain goes unrecognized during clinical encounters, patients may also be at greater risk for pain-related crises, use of hospice/palliative care on-call services, and in-patient transfers. This is an evidence-informed development of a practice-oriented conceptual model to understand and address patient reluctance to admit pain. We used a review of the available evidence to better understand the various factors that contribute to an unwillingness to disclose one's pain, create a conceptual model, and identify relevant assessment measures that may be useful to practitioners. Our review identified six primary attitudes and beliefs that contribute to patient reluctance to openly admit pain: (a) stigma; (b) stoicism; (c) cautiousness; (d) fatalism; (e) bother; and (f) denial. Four assessment measures that address elements of barriers to pain-related communication and four measures of nonverbal signs of pain were also identified and reviewed. Based on the model, social workers and other palliative care providers should consistently and vigilantly inquire about how comfortable patients are about discussing their own pain. Implications for practice and research are presented.

Purpose/objectives: To describe the experience of family members of patients receiving palliative sedation at the initiation of treatment and after the patient has died and to compare these experiences over time.
., Design: Descriptive comparative study.
., Setting: Oncology ward at Shaare Zedek Medical Center in Jerusalem, Israel.
., Sample: A convenience sample of 34 family members of dying patients receiving palliative sedation. 
., Methods: A modified version of a questionnaire describing experiences of family members with palliative sedation was administered during palliative sedation and one to four months after the patient died. Descriptive statistics were used to describe the results of the questionnaire, and appropriate statistical analyses were conducted for comparisons over time.
., Main Research Variables: Experiences of family members and time.
., Findings: Most relatives were satisfied with the sedation and staff support. Palliative sedation was experienced as an ethical way to relieve suffering. However, one-third felt that it shortened the patient's life. An explanation of the treatment was given less than half of the time and was usually given on the same day treatment was started. This explanation was given by physicians and nurses. Many felt that they were not ready for changes in the patient's condition and wanted increased opportunities to discuss the treatment with oncology care providers. No statistically significant differences in experiences were found over time. 
., Conclusions: Relatives' experiences of palliative sedation were generally positive and stable over time. Important experiences included timing of the initiation of sedation, timing and quality of explanations, and communication.
., Implications for Nursing: Nurses should attempt to initiate discussions of the possible role of sedation in the event of refractory symptoms and follow through with continued discussions. The management of refractory symptoms at the end of life, the role of sedation, and communication skills associated with decision making related to palliative sedation should be a part of the core nursing curriculum. Nursing administrators in areas that use palliative sedation should enforce good nursing clinical practice as recommended by international practice guidelines, such as those of the European Association for Palliative Care.

Objectives: To investigate whether it is possible to determine signs of imminent dying and change in pain and symptom intensity during pharmacological treatment in nursing home patients, from day perceived as dying and to day of death., Design: Prospective, longitudinal trajectory trial., Setting: Forty-seven nursing homes within 35 municipalities of Norway., Participants: A total of 691 nursing home patients were followed during the first year after admission and 152 were assessed carefully in their last days of life., Measurements: Time between admission and day of death, and symptom severity by Edmonton symptom assessment system (ESAS), pain (mobilization-observation-behavior-intensity-dementia-2), level of dementia (clinical dementia rating scale), physical function (Karnofsky performance scale), and activities of daily living (physical self-maintenance scale)., Results: Twenty-five percent died during the first year after admission. Increased fatigue (logistic regression, odds ratio [OR] 1.8, P = .009) and poor appetite (OR 1.2, P = .005) were significantly associated with being able to identify the day a person was imminently dying, which was possible in 61% of the dying (n = 82). On that day, the administration of opioids, midazolam, and anticholinergics increased significantly (P < .001), and was associated with amelioration of symptoms, such as pain (mixed-models linear regression, 60% vs 46%, P < .001), anxiety (44% vs 31%, P < .001), and depression (33% vs 15%, P < .001). However, most symptoms were still prevalent at day of death, and moderate to severe dyspnea and death rattle increased from 44% to 53% (P = .040) and 8% to 19% (P < .001), respectively. Respiratory symptoms were not associated with opioids or anticholinergics., Conclusion: Pharmacological treatment ameliorated distressing symptoms in dying nursing home patients; however, most symptoms, including pain and dyspnea, were still common at day of death. Results emphasize critical needs for better implementation of guidelines and staff education., Trial Registration: ClinicalTrials.govNCT01920100., (Copyright © 2016 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Pain is a multidimensional, complex experience. There are many challenges in identifying and meeting the needs of patients experiencing pain. Evaluation of pain from a bio-psycho-social-spiritual framework is particularly germane for patients approaching the end of life. This review explores the relation between the psychospiritual dimensions of suffering and the experience of physical pain, and how to assess and treat pain in a multidimensional framework. A review of empirical data on the relation between pain and suffering as well as interdisciplinary evidence-based approaches to alleviate suffering are provided.

Purpose: The primary aim of this study was to evaluate pain intensity changes in patients admitted to a hospice. The secondary objective was to evaluate whether these changes in pain were accompanied by modifications in therapies and drugs used to treat pain., Patients and Methods: This retrospective study included 96 patients admitted to a hospice for a minimum of 7 days who received pain therapy. An 11-point (0-10) numerical rating scale (NRS) was used to assess pain on a daily basis. A repeated measures analysis of variance was performed to evaluate pain intensity changes over time., Results: Mean ± SD pain NRS values of the entire group were 2.58 ± 2.61 on day 1 and 1.40 ± 1.72 on day 7 (P = 0.002). Restricting the analysis to patients with moderate to severe pain at the time of hospice admission, results were even more significant. In fact, mean ± SD pain NRS was 5.51 ± 1.24 for patients with pain ≥4 at admission and 1.76 ± 1.91 for the same patients after 7 days (P < 0.001). A significant increase in the number of patients receiving morphine was observed from day 1 to day 7 (24 to 41, respectively, P = 0.001) and in those receiving drugs via parenteral routes (subcutaneous or intravenous) from 10 to 27 (P = 0.002) CONCLUSIONS: Admission to a hospice and the hospice environment led to a significant reduction in reported pain intensity for the patients included in this study, mainly those with moderate to severe pain at the time of admission. This decrease in pain was accompanied by a significant increase in the use of morphine, especially via parenteral routes, but not by a higher mean equivalent daily dose of oral morphine per patient.

Context: Pain is a common and significant symptom experienced by children with advanced malignant disease. There is limited research on pain management of these children at home., Objectives: To describe and review the indications for using patient-controlled analgesia (PCA) in the form of a Computerized Ambulatory Drug Delivery device (CADD(®)) in the home setting., Methods: A retrospective chart review was conducted in children discharged home with opioid infusions using a CADD. Charts from January 2008 to February 2012 were surveyed., Results: Thirty-seven CADDs were dispensed during the study period, and of these, 33 were prescribed for patients with cancer-related pain. A third of the CADDs were commenced at home and almost all PCA CADDs were used for end-of-life care. Hydromorphone was the most commonly prescribed opioid. Patients remained at home and pain control was achieved by either increasing the opioid dose or switching the opioid and using adjuvant therapy. Sixteen patients were readmitted to hospital from home and three admissions were related to pain. The median duration on a PCA CADD at home was 33.7 days (range, 1-150 days), and the mean morphine equivalent dose was 2.13 mg/kg/day., Conclusion: PCA with a CADD can be used to manage pain in the home setting. Dose adjustments and opioid switches were performed with no adverse incidents., (Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

In order to relieve intractable suffering of a terminal patient, doctors may decide to continuously sedate a patient until the end of life. Little research is done on the role the family plays during the process of continuous sedation. This study aims to get a view of doctors' experiences with continuous sedation, and the role of the family throughout that process. We held in-depth interviews with 48 doctors (19 general practitioners, 16 nursing home doctors and 18 medical specialists). Participants were selected varying in experience and opinions concerning end-of-life decisions. Dutch physicians experience the role of family in continuous sedation as important and potentially difficult. Difficulties may rise especially during the final stages when the patient is no longer conscious and family members are waiting for death to come. Disagreement may arise between physician and family, concerning the dignity of the dying process or the question whether the sedated patient is suffering or not. Some physicians report they hastened the dying process, in order to relieve the families' suffering., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)

Introduction: This article describes the patterns of use of pain medicines of HIV-infected patients during last months of life in an HIV university-affiliated outpatient clinic., Methods: We retrospectively reviewed our databases and identified patients who died over the last 12 months in our clinic. Demographic, clinical, and laboratory information were abstracted., Results: A total of 41 patients died in our HIV outpatient clinic in a period of 12 months. Opioid analgesics were prescribed for 21 (51%) patients, with 10 (48%) of these patients prescribed short-acting opioid analgesics alone, In all, 11 patients (52%) were on a short-acting and long-acting opioid combination, and 30 (73%) patients experienced pain that was not adequately controlled., Discussion: Pain control during the last months of life for this population appears to be suboptimal. Better strategies are needed., (© The Author(s) 2013.)

Objective: Most cancer patients become increasingly anxious toward the end of their life. The objective of this study was to identify predictors of increased opioid dosage in the last week of a terminal cancer patient's life., Methods: We retrospectively reviewed charts of patients who died in our palliative care unit. We assigned the patients to increased group or decreased group according to changes in oral morphine equivalent dosage in their last 7 days. Logistic regression analysis was used to identify predictors of increased oral morphine equivalent dosage., Results: We analyzed data of 158 patients (female: 43.7%, median age: 64 years). The median oral morphine equivalent dosages on Days 7 and 1 before death were 50 mg (interquartile range: 24-122) and 61 mg (28-129), respectively. Independent predictors of increased oral morphine equivalent dosage included dyspnea (odds ratio: 11.5, 95% confidence interval: 4.98-28.83, P < 0.01), age <65 years (odds ratio: 2.3, 95% confidence interval: 1.04-5.26, P = 0.04) and oral morphine equivalent dosage <50 mg on Day 7 before death (odds ratio: 3.7, 95% confidence interval: 1.68-8.89, P < 0.01). The median oral morphine equivalent dosages on Days 7 and 1 before death were 48 mg (interquartile range: 20-126) and 75 mg (36-170) in patients with dyspnea, and 50 mg (25-120) and 57 mg (25-124) in patients with pain, respectively., Conclusions: Dyspnea, relative youth and oral morphine equivalent dosage <50 mg on Day 7 before death were predictive of increased oral morphine equivalent dosage in the last 7 days. Our findings may help oncologists to more accurately inform patients about expected opioid requirements and thus relieve their end-of-life anxiety., (© The Author 2014. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.)

Background: Studies describing physicians' experiences with sedation at the end of life are indispensible for informed palliative care practice, but they are scarce. We describe the accounts of physicians from the USA and the Netherlands, two countries with different regulations on end-of-life decisions regarding their use of sedation., Methods: Qualitative face-to-face interviews were held in 2007-2008 with 36 physicians (18 from the Netherlands, 18 from the USA), including primary care physicians and specialists. We applied purposive sampling and conducted constant comparative analyses., Results: In both countries, the use of sedation was described in diverse terms, especially in the USA, and was often experienced as emotionally challenging. Respondents stated different and sometimes multiple intentions for their use of sedation. Besides alleviating severe suffering, most Dutch respondents justified its use by stating that it does not hasten death, while most American respondents indicated that it might hasten death but that this was justifiable as long as that was not their primary intention. While many Dutch respondents indicated that they initiated open discussions about sedation proactively to inform patients about their options and to allow planning, the accounts of American respondents showed fewer and less-open discussions, mostly late in the dying process and with the patient's relatives., Conclusions: The justification for sedation and the openness with which it is discussed were found to differ in the accounts of respondents from the USA and the Netherlands. Further clarification of practices and research into the effect and effectiveness of the use of sedation is recommended to enhance informed reflection and policy making.

Patients with dementia receive suboptimal palliative care, and this patient group is at risk to have pain at the end of life. Because communicative impairments are common in this patient group, nurses play an important caregiver role in identifying, assessing, and relieving patients' pain. This study aimed to describe nurses' experiences regarding end-of-life pain relief in patients with dementia. This descriptive exploratory qualitative study was based on seven semistructured interviews. Burnard's content analysis inspired the data analysis. Two main categories were identified: (1) nurses' experience of difficulties concerning pain relief and (2) nurses' experience of resources concerning pain relief. Nurses experienced difficulties, such as feeling of powerlessness because of difficulties in obtaining adequate prescriptions for analgesics, ethical dilemmas, feeling of inadequacy because analgesia did not have the desired effect, and a feeling of not being able to connect with the patient. Factors, including knowledge about the patient, professional experience, utilization of pain assessment tools, interpersonal relationships, and interprofessional cooperation, served as resources and enabled end-of-life pain relief. The results of this study highlight the complexity of pain relief in patients with dementia at the end of life from a nursing perspective. The inability of patients with dementia to verbally communicate their pain makes them a vulnerable patient group, dependent on their caregivers. Knowing the life story of the patient, professional experience, teamwork based on good communication, and use of a pain assessment tool were reported by the nurses to improve pain relief at the end of life for patients with dementia., (Copyright © 2014 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.)

Context: The challenge to provide a palliative care service for individuals with advanced neurological conditions is compounded by variability in disease trajectories and symptom profiles. The National End of Life Care Programme (2010) recommended seven 'triggers' for a palliative approach to care for patients with advanced neurological conditions., Objectives: To establish the frequency of triggers in the palliative phase, and if they could be reduced to fewer components. Management of the terminal phase also was evaluated., Method: Retrospective study of 62 consecutive patients under the care of a specialist palliative neurology service, who had died. Principle component analysis (PCA) was performed to establish the interrelationship between triggers., Results: Frequency of triggers increased as each patient approached death. PCA found that four symptom components explained 76.8% of the variance. These represented: rapid physical decline; significant complex symptoms, including pain; infection in combination with cognitive impairment; and risk of aspiration. Median follow-up under the palliative care service was 336 days. In 56.5% of patients, the cause of death was pneumonia. The terminal phase was recognised in 72.6%. The duration of the terminal phase was 8.8 days on average, and the Liverpool Care of the dying Pathway was commenced in 33.9%. All carers were offered bereavement support., Conclusions: Referral criteria based on the triggers can facilitate appropriate and timely patient access to palliative care. The components deduced through PCA have face validity; however larger studies prospectively validating the triggers are required. Closer scrutiny of the terminal phase is necessary to optimise management.

Context: Perinatal palliative care is an area of increasing focus among clinicians supporting newborns and their families. Although not every newborn will survive the neonatal period, assuring their comfort and quality of life remains an imperative for their care providers. It can be challenging to administer medications such as opioids in a minimally invasive yet effective manner., Objectives: To describe the experience using intranasal (IN) fentanyl in the management of distress in a case series of 11 dying neonates., Methods: A retrospective chart review was undertaken of 58 consecutive referrals of newborns and infants aged six months or younger between November 2006 and July 2010 to the Winnipeg Regional Health Authority Pediatric Palliative Care Service to determine how often IN fentanyl was used and review documented responses after the medication., Results: Of 58 referrals, IN fentanyl was used in 11 patients, in all cases for concerns regarding respiratory distress. Chart documentation indicated that fentanyl was tolerated well, with no circumstances of drug-related apnea and no occurrences of chest wall rigidity. In most cases, labored breathing and restlessness settled after medication administration. The average time from administration of the last dose of fentanyl until death was 61 minutes., Conclusion: We found IN fentanyl, which can be administered in a variety of care settings, to be a minimally invasive means of palliating distress in dying newborns and infants. No adverse events related to its use were noted., (Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Purpose of Review: Awareness of palliative care, including knowledge and skills regarding symptom alleviation via pharmacological and non-pharmacological interventions, is limited in many settings. Lists have been published of recommended drugs for palliative care that include medications for different disease stages, using different modes of administration., Recent Findings: Recent studies confirm that many of the most common symptoms in dying patients, for example pain, dyspnoea, anxiety, nausea, and delirium, are similar regardless of diagnosis. The classes of drugs most commonly recommended for alleviation of these symptoms are opioids, neuroleptics, benzodiazepines, and antimuscarinic drugs. Other recommendations have the character of emergency kits of standard drugs for common symptoms, to be used when needed in caring for dying patients at home or in hospitals., Summary: Recommendations for the most appropriate drugs which should be available for the care of dying patients in all settings is suggested to have potential to improve quality of care through increasing the confidence of physicians and nurses, being costeffective, decreasing the need for hospital admissions, and most of all - reducing suffering. Education and training at all levels, as well as further policy work through expert recommendations, care pathways, and media attention, are needed.

Aim: To assess advanced cancer pain in older adults with dementia at the end-of-life., Background: Self-report is the gold standard for pain assessment; however, people with Alzheimer's disease may lose the ability to report pain. Biochemical and neuropathological changes occur in Alzheimer's disease that impairs the affective, sensory, and motor pain processing regions of the brain. Because people with severe Alzheimer's disease may lose the ability to report their sensory and emotional response to pain verbally, external motor displays of pain, such as grimacing, have been suggested for use in people with Alzheimer's disease., Design: Between groups cross sectional study., Method: Retrospective chart audits of people with Alzheimer's disease in nine nursing homes in the US in 2009. Participants were nursing home residents (n = 48) with mild to very severe dementia, pain and cognitive measures were collected during the final 3 months of life. The primary outcome variable was the discomfort behaviour scale score (a measure of observed pain behaviour) and the main predictor variable was the cognitive performance scale score (a measure of Alzheimer's disease severity). Medication administration (opioid, non-narcotic, and psychotropic medications) recorded over the final 2 weeks of life was collected as a covariate of interest., Results: Alzheimer's disease severity was negatively associated with pain behaviours. Post hoc procedures showed that this difference was due to the difference in pain behaviours between individuals with moderate and very severe Alzheimer's disease. Total amount of opioid analgesic, total number of doses of non-narcotic medications, and psychotropic medications administered over the last 2 weeks of life were not statistically significantly correlated with pain behaviour. An inverse correlation was found between cognitive ability (Cognitive Performance Scale score) and total amount of opioid medication indicating that individuals with severe Alzheimer's disease received less opioid., Conclusion: Because people with worsening Alzheimer's disease have fewer pain behaviours, assessing pain using behavioural indicators can be a challenge. Improving methods to assess for pain in people with Alzheimer's disease is of critical public health importance. Moreover, future studies are urgently needed to further examine the sensory, emotional, and behavioural responses to pain in people with Alzheimer's disease., (© 2012 Blackwell Publishing Ltd.)

Objective: Suffering frequently occurs in the context of chronic and progressive medical illnesses and emerges with great intensity at end-of-life. A review of the literature on suffering and distress-related factors was conducted to illustrate the integrative nature of suffering in this context. We hope it will result in a comprehensive approach, centered in the patient-family unit, which will alleviate or eliminate unnecessary suffering and provide well-being, when possible., Methods: An extensive search of the literature on suffering and distress in end-of-life patients was conducted. While the present review is not a systematic one, an in-depth search using the terms 'Suffering', 'Distress', End-of-Life', 'Palliative Care', and 'Terminal illness' was conducted using search engines such as PubMed, PsycINFO, MEDLINE, EBSCO-Host, OVID, and SciELO., Results: Taking into account the comprehensive and integrative nature of suffering, factors related to the physical, psychological, spiritual, and social human dimensions are described. As well, some treatment considerations in the palliative care context are briefly discussed., Conclusions: Suffering is individual, unique, and inherent to each person. Assessment processes require keeping in mind the complexity, multi-dimensionality, and subjectivity of symptoms and experiences. Optimal palliative care is based on continuous and multidimensional evaluation and treatment of symptoms and syndromes. It should take place in a clinical context where the psychological, spiritual, and socio-cultural needs of the patient-family unit are taken care of simultaneously. A deep knowledge of the nature of suffering and its associated factors is central to alleviate unnecessary suffering., (Copyright © 2011 John Wiley & Sons, Ltd.)

Pain is one of the symptoms most frequently encountered in elderly patients at the end of life. The management of pain in the elderly in general has been associated with undertreatment. The geriatric population has been identified as a challenging population with respect to pain management because of issues related to co-morbidities, polypharmacy and cognitive dysfunction. In the geriatric population, the assessment of pain requires measurement of pain intensity, delineation of opioid responsiveness, and clarification of the impact of pain on patients' psychological, social, spiritual and existential domains. Effective pain management is guided by the World Health Organization (WHO) analgesic stepladder, which categorizes pain intensity according to severity and recommends analgesic agents based on their strength and works effectively in the elderly patient population. Step 1 is reserved for mild pain. Patients in this category are treated with nonopioid analgesics such as acetaminophen, or a nonsteroidal anti-inflammatory, with consideration of an adjuvant analgesic if necessary. Step 2 is reserved for patients experiencing mild to moderate pain who are already taking a nonopioid analgesic, with or without an adjuvant analgesic, but are still experiencing poor analgesic control. Step 2 agents include acetaminophen products containing hydrocodone, oxycodone, codeine and tramadol. Patients with moderate to severe pain require strong analgesics belonging to step 3 of the WHO analgesic stepladder. Step 3 opioids include morphine, hydromorphone, fentanyl, levorphanol, methadone and oxycodone. Familiarity with opioid pharmacokinetics, equianalgesic dosing and adverse effects is necessary for the safe and effective use of these drugs. The appropriate use of adjuvant analgesics such as antiepileptic drugs, antidepressants and local anaesthetics can enhance the use of opioids, especially in cases where opioid responsiveness may be in question, such as with neuropathic pain. This paper will provide an overview of the analgesic considerations for elderly patients at the end of life.

Therapeutic cannabis use raises a number of dilemmas for nurses. This article examines the legal, political and ethical challenges raised by the use of cannabis by people with life-limiting or terminal illnesses in their own homes. (Throughout this paper, the term cannabis refers to illegal cannabis unless specified.) A literature review of databases from 1996 was conducted and internet material was also examined. Evidence on the therapeutic use of cannabis suggests it may produce improvements in quality of life, which has led to increased use among people with life-limiting illnesses. The cannabis used is usually obtained illegally, which can have consequences for both those who use it and nurses who provide treatment in the community.

During the course of cancer progression up to 90% of the patients suffer from pain of nociceptive, neuropathic or mixed nociceptive/neuropathic origin. Psychological, social or existential factors may additionally affect the intensity of pain (concept of "total pain"). The WHO "analgesic ladder" provides a large variety of effective drugs that can be used according to the specific pain type. Parenteral or peridural opioid therapy as well as neurodestructive methods can effectively support the analgesic treatment in selected cases.

The treatment of cancer pain shows a special challenge in the ambulatory and stationary treatment of various medical departments. A multifactorial design has to be established for the treatment of breakthrough pain episodes. The development of fast acting lipophilic opioids has improved the therapy of breakthrough pain. Combining these opioids with non-opioid analgetics, adjuvant drugs, interventional procedures, radiotherapy, orthotic devices and surgical /orthopedic interventions delivers a multimodal approach to manage breakthrough cancer pain., (© Georg Thieme Verlag Stuttgart · New York.)

Aims: Pain is among the most frequent and distressing symptoms in terminally-ill cancer and, to date, many patients still experience uncontrolled pain. In this paper we evaluated prevalence and intensity of pain on admission in our palliative care center and during the first three days of care., Patients and Methods: From September 2009 to October 2009 we consecutively recruited 96 terminally-ill cancer patients : on admission more than 50% had severe pain and only 4% referred to be pain-free. 54% of patients was on treatment with strong opioids., Results: After three days from admission in our palliative care unit only 7% of patients experienced severe pain, 25% reported absence of pain and 80% of patients was on treatment with strong opioids., Conclusions: The beginning of palliative care led to a meaningful and rapid reduction of pain in the vast majority of terminally-ill cancer patients evaluated in this study.

Background: Clinicians may avoid continuous pain blocks in pediatric cancer patients at the end of life for fear of complications or of interfering with the desired location of death., Objectives: To examine the impact of epidural or peripheral nerve catheters on pain control in children and young adults with cancer within the last 3 months of life., Methods: We retrospectively reviewed the medical records to assess pain scores, systemic opioid requirements, and impact on death at the preferred location., Results: Ten patients (4.4-21.3 years of age), nine with solid tumors, one with lymphoma, had 14 devices (11 epidural, 3 peripheral nerve catheters) for a range of 3-81 days. Twelve of 13 catheters provided improvement by at least one of three criteria: improved mean pain scores at 24 h (8 of 13) and decreased opioid requirement at 24 h in nine cases and at day 5 in nine cases. Eight patients died in their preferred setting. Six patients had catheters (five epidural, one peripheral) until death, including two who died at home. In some cases, typical contraindications for indwelling catheters (spinal metastasis, vertebral fracture, thrombocytopenia, fever) were superseded by palliative care needs. We found no bleeding, infectious, or neurological complications., Conclusions: Our findings suggest that continuous catheter-delivered pain blockade at the end of life contributes to analgesia, moderates opioid requirements, and usually does not preclude death at the preferred location., (© 2010 Blackwell Publishing Ltd.)

Current guidelines treat palliative sedation to unconsciousness as an effective medical treatment for terminally ill patients who need relief from severe symptoms, yet also restrict its use in ways that are extraordinary for medical treatments. A closer look at the kinds of cases in which palliative sedation is used suggests a way of adjusting the guidelines to resolve this seeming contradiction.

Aims and Background: The aggressiveness of cancer care near the end of life and the consumption of opioids are potential indicators of quality of care in palliative and end-of-life settings. The purpose of this article is to present a retrospective analysis regarding these themes and the adopted procedures to improve quality of care., Methods: We evaluated all cancer patients treated and deceased during 2008 and considered those who died and received any antiblastic therapy within 14 and 30 days prior to death. Moreover, we evaluated the annual consumption of pure opioids during 2007 and 2008 in our inpatient clinic. We found that 5% and 9% of all treated patients were still receiving antiblastic treatment near the end of life within respectively 14 and 30 days prior to death (respectively 29.6% and 51.5% of deceased patients). All but 2 patients died from progressive disease, one patient died from acute myocardial infarction during chemotherapy, and one of severe sepsis after chemotherapy for non-Hodgkin lymphoma. As regards the annual consumption of strong opioids, there was a 179% increase in the use of morphine-equivalent doses of oral long-acting opioids (+228% for oxycodone) after the introduction of daily pain measurement through a numerical rating scale., Conclusions: To reduce the administration of chemotherapy near the end of life, we introduced the palliative prognostic score, to be administered to all advanced cancer patients with performance status of at least 2. To evaluate the effectiveness of analgesics and to reduce the cases of undertreatment of cancer pain, we adopted, in addition to the numerical rating scale, Cleeland's Pain Management Index. We are convinced that attempts to improve the quality of care can be achieved by the collaboration of all health professionals, patients and care givers.

Objective: To deliver quality care at the end of life, understanding the impact of various changes and life transitions that occur in older age is essential. This review seeks to uncover potential sources of distress in an elder's physical, psychological, social, and spiritual well-being to shed light on the unique challenges and needs facing this age group., Methods: Papers relating to older adults (aged 65 years and older or a mean age of 65 years and older) with advanced/terminal cancer receiving palliative, hospice, or end-of-life care published after 1998 were reviewed., Results: Older adults with advanced cancer have unique needs related to changes in their physical, psychological, social, and spiritual well-being. Changes in each of these domains offer not only the risk of causing distress but also the potential for growth and development during the final stages of advanced cancer., Significance of Results: Being aware of the various changes that occur with aging will help health care professionals tailor interventions to promote dignity-conserving care and greatly reduce the potential for suffering at the end of life.

This paper examines pain and pain relief in the Caribbean, where pain is widely perceived as an unavoidable part of life, and where unnecessary suffering results from untreated and under treated pain. Barriers to pain relief in the Caribbean include patient and family attitudes, inadequate knowledge among health professionals and unduly restrictive regulations on the medical use of opioids. Similar barriers exist all over the world. This paper urges medical, nursing and public health professionals, and educators to examine attitudes towards pain and pain relief and to work towards making effective pain relief and palliation more accessible. It recommends that i) health professionals and officials be better educated about pain, palliation and opioids, ii) regulatory restrictions be updated in light of clinical and scientific evidence, iii) opioid procurement policies be adjusted to facilitate increased medical use, iv) medical charts and records be modified to routinely elicit and document patients levels of pain, and v) educational campaigns be developed to inform the public that moderate and severe pain can be safely relieved at the end of life and other stages of life. The professional, respectful, and beneficent response to patients in pain is to provide rapid and aggressive pain relief or to urgently consult a pain or palliative specialist. When a health system hinders such efforts the ethical response is to identify, facilitate and advocate for overcoming barriers to improvement.

Objective: Palliative medication kits for home use were developed in order to extend the period of time terminally ill patients might be cared for in their homes., Design: Kits containing medications that could be used when the oral route was lost, targeting common symptoms that result in hospital admissions, were placed in homes of terminally ill patients., Setting: Regional health authority, urban setting, community-based palliative care., Population: Patients receiving care in the community, anticipated to die within the next 2 weeks and wishing to be cared for at home as long as possible., Intervention: Kits were used when patients were experiencing symptom escalation or crisis, and the drugs to manage these were otherwise not available. Community palliative care nurses recommended when to open the kit and received verbal orders from the supervising palliative care physician for the medications to be administered., Main Outcome Measures: Number of kits placed and opened and the prevalence of home death in those instances; the number of kits placed and not opened and the prevalence of home death in those instances., Results: From 2002-2007, a total of 293 kits were placed in patients' homes and used. Two hundred fifty-eight patients (88%) died at home, compared to 24% who died outside of an acute care setting across the entire program (chi(2) = 579.71; p < 0.0001). In 2006-2007, 73 kits were placed but not used. Forty-four patients (60%) died at home, compared to a program home death rate of 27% (chi(2) = 60.70; p < 0.0001)., Conclusions: Palliative medication kits are a simple and effective way of anticipating and addressing comfort and symptom control for dying patients being cared for in the community. These kits can avert institutional crisis admissions, extend the period of time patients can be cared for in their homes and may increase the likelihood of a home death.

Terminally ill cancer patients near the end of life may experience intolerable suffering refractory to palliative treatment. Although sedation is considered to be an effective treatment when aggressive efforts fail to provide relief in terminally ill patients, it remains controversial. The aim of this study was to assess the need and effectiveness of sedation in dying patients with intractable symptoms, and the thoughts of relatives regarding sedation. A prospective cohort study was performed on a consecutive sample of dying patients admitted to an acute pain relief and palliative care unit within a cancer center. Indications for sedation, opioid and midazolam doses, level of delirium and sedation, nutrition, hydration, rattle, inability to cough and swallow, pharyngeal aspiration, duration of sedation and survival, and use of anticholinergics or other drugs were recorded. Family members were interviewed. Forty-two of 77 dying patients were sedated, and had a longer survival than those who were not sedated (P=0.003). Prevalent indications for sedation were dyspnea and/or delirium. Twelve patients began with an intermediate sedation, and 38 patients started with definitive sedation. The median sedation duration was 22 hours. Opioid doses did not change during sedation. Agitated delirium significantly decreased with increasing doses of midazolam, whereas the capacity to communicate concomitantly decreased. Interviewed relatives were actively involved in the process of end-of-life care, and the decision to sedate, and the efficacy of sedation, were considered appropriate by almost all relatives. Controlled sedation is successful in dying patients with untreatable symptoms, did not hasten death, and yielded satisfactory results for relatives. This study also points to the importance of palliative care and the experience of professionals skilled in both symptom control and end-of-life care.