Depuis l'Oregon Death with Dignity Act adopté en 1997, la dépénalisation de l'euthanasie aux Pays-Bas en 2001, puis en Belgique l'année suivante, de plus en plus de personnes demandent l'euthanasie ou en considèrent la possibilité.
Well-designed, rigorously implemented instrumentation studies are essential to develop valid, reliable pain assessment tools in non-communicative (non-self-reporting) palliative care patients. When conducting a pain instrumentation study, a research team identified methodologic challenges surrounding informed consent, eligibility criteria, acute pain operational definitions, patient recruitment, missing data, and study-related training during a run-in phase at the beginning of the project and during the conduct of the study. The team dealt with these challenges through identifying root causes, implementing remedial measures, and collecting data to demonstrate improvement or resolution. Effective strategies included obtaining Institutional Review Board (IRB) approval for a waiver of informed consent, modifying eligibility criteria, ensuring that operational definitions and study procedures were consistent with clinical practice, decreasing time from screening to data collection to improve recruitment, increasing study nurse staffing by re-budgeting grant funds, focusing time and resources on high accruing clinical units, revising processes to minimize missing data, and developing detailed training for users of the instrument. With these multi-pronged solutions, the team exceeded the patient accrual target by 25% within the funding period and reduced missing data. While pain instrumentation studies in non-communicative patients have similar challenges to other palliative care studies, some of the solutions may be unique and several are applicable to other palliative care studies, particularly instrumentation research. The team's experience may also be useful for funders and IRBs.
PURPOSE: Approaching death seems to be associated with physiological/spiritual changes. Trajectories including the physical-psychological-social-spiritual dimension have indicated a terminal drop. Existential suffering or deathbed visions describe complex phenomena. However, interrelationships between different constituent factors (e.g., fear and pain, spiritual experiences and altered consciousness) are largely unknown. We lack deeper understanding of patients' inner processes to which care should respond. In this study, we hypothesized that fear/pain/denial would happen simultaneously and be associated with a transformation of perception from ego-based (pre-transition) to ego-distant perception/consciousness (post-transition) and that spiritual (transcendental) experiences would primarily occur in periods of calmness and post-transition. Parameters for observing transformation of perception (pre-transition, transition itself, and post-transition) were patients' altered awareness of time/space/body and patients' altered social connectedness.
METHOD: Two interdisciplinary teams observed 80 dying patients with cancer in palliative units at 2 Swiss cantonal hospitals. We applied participant observation based on semistructured observation protocols, supplemented by the list of analgesic and psychotropic medication. Descriptive statistical analysis and Interpretative Phenomenological Analysis (IPA) were combined. International interdisciplinary experts supported the analysis.
RESULTS: Most patients showed at least fear and pain once. Many seemed to have spiritual experiences and to undergo a transformation of perception only partly depending on medication. Line graphs representatively illustrate associations between fear/pain/denial/spiritual experiences and a transformation of perception. No trajectory displayed uninterrupted distress. Many patients seemed to die in peace. Previous near-death or spiritual/mystical experiences may facilitate the dying process.
CONCLUSION: Approaching death seems not only characterized by periods of distress but even more by states beyond fear/pain/denial.
Background: Multimorbidity and pain are both common among older adults, yet pain treatment strategies for older patients with multimorbidity have not been well characterized.
Objectives: To assess the prevalence and relationship between multimorbidity and opioid prescribing in hospitalized older medical patients with pain.
Methods: We collected demographic, morbidity, pain, and analgesic treatment data through structured review of the electronic medical records of a consecutive sample of 238 medical patients, aged =65 years admitted between November 2014 and May 2015 with moderate-to-severe pain by numerical pain rating scale (range 4–10). We used the Cumulative Illness Rating Scale for Geriatrics (CIRS-G) to assess multimorbidity and cumulative illness burden. We examined the relationship between morbidity measures and opioid prescribing at hospital discharge using multivariate regression analysis.
Results: The mean age was 75 ± 8 years, 57% were female and 50% were non-White. Mean CIRS-G total score was 17 ± 6, indicating high cumulative illness burden. Ninety-nine percent of patients had multimorbidity, defined as moderate-to-extremely severe morbidity in =2 organ systems. Sixty percent of patients received an opioid prescription at discharge. In multivariate analyses adjusted for age, race, and gender, patients with a discharge opioid prescription were significantly more likely to have higher cumulative illness burden and chronic pain.
Conclusion: Among older medical inpatients, multimorbidity was nearly universal, and patients with higher cumulative illness burden were more likely to receive a discharge opioid prescription. More studies of benefits and harms of analgesic treatments in older adults with multimorbidity are needed to guide clinical practice.
Ce numéro d'Essaim est consacré à la mort et à ses relations avec la psychanalyse. Les contributeurs étudient les points de vue de penseurs tels que Freud ou Lacan et abordent des notions telles que l'entre-deux-morts, la douleur d'exister, la fin de vie, les formes de deuil ou la pulsion de mort.
Objectives: To explore pharmacists’ perspectives on practice, availability, and barriers related to opioids.
Methods: This cross-sectional study evaluated pharmacists’ perspectives on practice, availability, and barriers related to opioids. Electronic surveys were distributed to pharmacists practicing in Georgia via Survey Monkey. The 2 or Fisher Exact test was used to test differences in practice, availability, and barriers with respect to type of pharmacy and location of pharmacy.
Results: Most participating pharmacists practiced in an independent (47%) or community chain pharmacies (37%). The majority checked the Prescription Drug-Monitoring Program (PDMP) on a regular basis (73%), and about a third reported contacting the prescriber prior to dispensing. The most common barrier included concerns about diversion (82%) and illicit use (90%). About two-thirds reported experiencing a shortage of opioids. Significant differences (P < .05) were found between types of pharmacy in dispensing practices, availability, and barriers. No significant differences were found with respect to pharmacy location.
Conclusion: Findings suggest that pharmacists are facing challenges in availability of opioids and are employing stewardship approaches to optimize dispensing practices. This research provides insight regarding broken links in the “pain relief chain” and identifies opportunities to improve the accessibility of opioids when medically indicated. Pharmacists can play an important role in addressing the opioid crisis as well as providing quality care to patients with cancer seeking pain relief.
Les articles de ce volume cherchent à comprendre la souffrance à partir de ses propres représentations et soulignent la nécessaire articulation des discours littéraires, philosophiques, psychanalytiques et médicaux pour cerner ce fait social et moral total qu'est l'expérience, vécue et vivante, de la souffrance.
Background: Cancer is a major burden of disease and a public health problem, as it is one of the main causes of morbidity and mortality worldwide. It is estimated that 25% of cancer patients die without receiving proper pain management.
Objective: To acknowledge the epidemiological profile of first-time patients at the palliative care service of a referral center, along with the pharmaceutical treatment and social and familiar implications of the treatment costs in first-time patients.
Methods: A survey including 28 questions was conducted including 490 first-time patients at the National Cancer Institute in Mexico City.
Results: Median age was 53 years; 63.3% (n = 310) were females; 72% were married or single (50.5% and 21.2%, respectively). The most frequent diagnoses were gastrointestinal tumors, followed by urological, and skin/soft tissue carcinomas (19.8%, 12.5%, and 12%, respectively). Pain prevalence was 50.4% among the cohort. From the subgroup of participants with pain, 26.7% presented an intensity =7.
Conclusions: As most patients in our study presented pain, there is a need of strengthening public policy about opioid treatments.
BACKGROUND: Expressive writing involves writing about stressful or traumatic experiences. Despite trials in people with advanced disease, no systematic review to date has critiqued the evidence on expressive writing in this population. To synthesise the evidence of the effects of expressive writing on pain, sleep, depression and anxiety in people with advanced disease.
METHODS: A systematic review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. CINAHL, CENTRAL, PsycINFO and PubMed were searched from January 1986 to March 2018. Other sources included clinical data registers and conference proceedings. Studies were included if they were randomised controlled trials that assessed the impact of an intervention involving expressive writing for adults with advanced disease and/or studies involving linguistic analysis on the expressive writing output. Methodological quality was assessed using the Cochrane risk of bias tool and the Mixed Methods Appraisal Tool. The Grading of Recommendations Assessment, Development and Evaluation tool was used to assess the level of evidence for the outcomes of interest. The protocol of this systematic review has been registered on PROSPERO (CRD42017058193).
RESULTS: Six eligible studies with a total of 288 participants were identified, including four randomised controlled trials. All of the trials were in cancer and recruited predominantly women. None of the interventions were tailored to the population. Studies had methodological shortcomings and evidence was generally of low quality. Combined analysis of the four trials, involving 214 participants in total, showed no clear difference in the effect of expressive writing on sleep, anxiety or depression compared to an active control. Pain was not evaluated in the trials. In contrast, analysis of the four studies that included linguistic analysis alluded to linguistic mechanisms for potential effects.
CONCLUSION: Although the trial results suggest there is no benefit in expressive writing for people with advanced disease, the current evidence is limited. There is a need for more rigorous trials. It would be of benefit first to undertake exploratory research in trial design including how best to measure impact and in tailoring of the intervention to address the specific needs of people with advanced disease.
TRIAL REGISTRATION: The protocol of this systematic review has been registered on PROSPERO, which can be accessed here (registration number: CRD42017058193 ).
Objective: Polypharmacy (PP) is a burden in elderly patients with cancer pain; however, risk factors for PP remain unclear. The purpose of this study was to investigate the risk factors for PP in this patient population.
Methods:We retrospectively reviewed the medical charts of patients aged = 65 years with cancer pain who were treated at Osaka University Hospital between February 2014 and June 2016 according to the World Health Organization 3-step ladder for cancer pain relief. We defined PP as =5 medications and conducted exploratory research to examine the association between PP and patient characteristics. Performance status (PS) was estimated according to the Eastern Cooperative Oncology Group system and is categorized as good PS (0-1) and poor PS (2-4).
Results: We reviewed 206 patients (122 men and 84 women) with a median age of 71 years (range, 65-89 years) and found that 174 patients (84.5%) had PP. In multivariate logistic analysis, PP was significantly associated with an increased number of comorbidities (odds ratio [OR]: 4.93, 95% confidence interval [CI], 2.57-11.42, P < .001), poor PS (OR: 4.50, 95% CI, 1.06-31.68, P = .039), and administration of an anticancer or molecular targeted drug (OR: 2.78, 95% CI, 1.13-7.16, P = .025).
Conclusions: An increased number of comorbidities, poor PS, and administration of an anticancer or molecular targeted drug were considered risk factors for PP in elderly patients with cancer pain. Sharing these risk factors with medical staff will help reduce the occurrence of problems associated with PP.
Prescription opioids are among the most effective analgesics to treat moderate to severe pain; however, little is known about the use of prescription opioids in children, particularly those receiving an extended-release formulation for the treatment of chronic pain. In this retrospective study, the authors determined the prevalence of prescription opioid use among 7–17-year-old children and associated comorbid health conditions from 2010 to 2013 using Truven Health MarketScan (MarketScan) and Optum Clinformatics DataMart (Optum). The primary end points were prevalence of using any prescription opioids, using only prescription short-acting opioids (SAOs), and at least one prescription of a long-acting opioid (LAO). The prevalence of prescription opioid use among children is non-negligible and has been trending downwards: 6.90% in 2010 and 5.93% in 2013 using MarketScan and a similar trend using Optum: 5.47% in 2010 and 4.51% in 2013. Very few children had claims for LAOs, with only 0.04% (4979 children) in MarketScan and 0.03% (1117 children) in Optum. Given the very small number of children, primarily in the 12–17 age group, who are prescribed LAOs, there is a need to focus on a better understanding of the patterns of SAO use in children.
CONTEXT: Family caregivers (FCGs) of hospice cancer patients face significant challenges related to pain management. Addressing many of these challenges requires effective communication between FCGs and hospice nurses, yet little empirical evidence exists on the nature of communication about pain management between hospice nurses and FCGs.
OBJECTIVES: We identified ways in which FCGs of hospice cancer patients communicated their pain management challenges to nurses during home visits and explored nurses' responses when pain management concerns were raised.
METHODS: Using secondary data from audio recordings of hospice nurses' home visits, a deductive content analysis was conducted. We coded caregivers' pain management challenges and immediate nurses' responses to these challenges.
RESULTS: From 63 hospice nurse visits, 101 statements describing caregivers' pain management challenges were identified. Thirty percent of these statements pertained to communication and teamwork issues. Twenty-seven percent concerned caregivers' medication skills and knowledge. In 52% of the cases, nurses responded to caregivers' pain management challenges with a validating statement. They provided information in 42% of the cases. Nurses did not address 14% of the statements made by caregivers reflecting pain management challenges.
CONCLUSION: To optimize hospice patients' comfort and reduce caregivers' anxiety and burden related to pain management, hospice nurses need to assess and address caregivers' pain management challenges during home visits. Communication and educational tools designed to reduce caregivers' barriers to pain management would likely improve clinical practice and both patient- and caregiver-related outcomes.
Purpose. This study aimed to characterize breakthrough pain (BTP) and investigate its impact on quality-of-life (QoL) in terminally-ill cancer patients. Similarities and differences between high and low predictable BTP were also tested. Methods. Secondary analysis of a multicenter longitudinal observational study included 92 patients at their end-of-life. BTP was assessed with a short form of the Italian version of the Alberta Breakthrough Pain Assessment Tool. QoL was assessed with the Palliative Outcome Scale (0-40). Patients were stratified by self-reported BTP predictability into unpredictable BTP (never or rarely able to predict BTP) and predictable BTP (sometimes to always able to predict BTP). Results. In all, 665 BTP episodes were recorded (median 0.86 episodes/day). A median duration of 30 minutes and a median peak intensity score of 7 out of 10 were reported. Time to peak was <10 minutes, 10 to 30 minutes, and 30 minutes in 267 (41.1%), 259 (39.9%), and 30 (4.6%) of the episodes, respectively. Onset of relief occurred after a median of 30 minutes. Time to peak (P < .001) and duration (P = .046) of BTP was shorter in patients with predictable pain (n = 31), who usually were younger than those with unpredictable pain (P = .03). The mean (SD) QoL score was 14.6 (4.6). No difference in QoL between patients with predictable and unpredictable BTP was found (P = .49). Conclusions. In terminally-ill cancer patients, BTP is a severe problem with a negative impact on QoL and has different characteristics according to its predictability.
OBJECTIVE: The positive impact of early palliative care interventions in advanced cancer patients has so far been largely evaluated in randomised controlled trials. This study aimed at providing information on the value of early palliative/supportive care, integrated with standard oncologic care, in a real-life setting.
METHODS: This was a retrospective observational study of 292 advanced cancer patients consecutively admitted at Carpi Hospital in Modena, Italy, between 2014 and 2017. For the purpose of this analysis, patients were classified into two groups (early and delayed palliative/supportive care patients), and analysed for different clinical indicators. Early and delayed palliative/supportive care were classified according to the time elapsed from advanced cancer diagnosis until palliative/supportive care start.
RESULTS: A total of 200 patients (68%), with at least three visits, were included in the analyses. The frequency of chemotherapy use in the last 60 days of life was 3.4% and 24.6% in the early and delayed groups, respectively (adjusted OR=0.1; 95% CI 0.0 to 0.4; p=0.002). The estimated survival probability at 1 year was 74.5% (95% CI 65.0% to 85.4%) and 45.5% (95% CI 37.6% to 55.0%), in the early and delayed groups, respectively. Performance status, pain and all the Edmonton Symptom Assessment Scale items, assessed at baseline and at 1 to 12 weeks after the intervention, showed significant improvement over time. However, no between-group differences were found with regard to symptom outcomes.
CONCLUSIONS: An earlier palliative/supportive care intervention was associated with reduced aggressiveness of therapy, in patients receiving community oncology care. Symptom burden was improved by early palliative/supportive care, independently of the timing of patient referral.
Background: When capturing patient-level outcomes in palliative care, it is essential to identify which outcome domains are most important and focus efforts to capture these, in order to improve quality of care and minimise collection burden.
Aim: To determine which domains of palliative care are most important for measurement of outcomes, and the optimal time period over which these should be measured.
Design: An international expert consensus workshop using nominal group technique. Data were analysed descriptively, and weighted according to ranking (1–5, lowest to highest priority) of domains. Participants’ rationales for their choices were analysed thematically.
Setting/participants: In all, 33 clinicians and researchers working globally in palliative care outcome measurement participated. Two groups (n = 16; n = 17) answered one question each (either on domains or optimal timing). This workshop was conducted at the 9th World Research Congress of the European Association for Palliative Care in 2016.
Results: Participants’ years of experience in palliative care and in outcome measurement ranged from 10.9 to 14.7 years and 5.8 to 6.4 years, respectively. The mean scores (weighted by rank) for the top-ranked domains were ‘overall wellbeing/quality of life’ (2.75), ‘pain’ (2.06), and ‘information needs/preferences’ (2.06), respectively. The palliative measure ‘Phase of Illness’ was recommended as the preferred measure of time period over which the domains were measured.
Conclusion: The domains of ‘overall wellbeing/quality of life’, ‘pain’, and ‘information needs/preferences’ are recommended for regular measurement, assessed using ‘Phase of Illness’. International adoption of these recommendations will help standardise approaches to improving the quality of palliative care.
Les notions fondamentales des soins palliatifs sont présentées en fiches synthétiques, avec des cas concrets et des situations cliniques. L'ouvrage aborde la douleur, les symptômes, le soin de confort, la souffrance psychique, la sédation ou encore l'éthique.
OBJECTIVE: To select outcomes and indicators of the Nursing Outcomes Classification (NOC), in order to assess patients with cancer under palliative care with Acute and Chronic Pain Nursing Diagnoses; and to construct the conceptual and operational definitions of the indicators.
METHOD: Expert opinion study and literature review. The sample consisted of 13 experts. The data collection was in own tool applied in face-to-face meeting and by e-mail. In the analysis of the data, it was considered between 75% and 100% of agreement.
RESULTS: Eight outcomes and 19 indicators were selected. The results with higher scores were Pain Level, Pain Control and Client Satisfaction: Pain Management. For all indicators selected, conceptual and operational definitions were constructed.
CONCLUSION: The selection of results and priority indicators for the assessment of pain in palliative care, as well as the construction of its definitions, will support clinical practice.
Background: Pain remains one of the most common and debilitating symptoms of advanced cancer. To date, there is a lack of studies on pain and its treatment among Malaysian palliative care patients.
Objective: This study aimed to explore the prevalence of pain and its treatment outcomes among adult cancer patients admitted to a palliative care unit in Sabah, Malaysia.
Methods: Of 327 patients screened (01/09/15-31/12/17), 151 patients with assessed self-reported pain scores based on the numerical rating scale of 0-10 (current, worst and least pain within the past 24 hours) upon admission (baseline), 24, 48 and 72 hours post-admission and discharge were included. Pain severity and pain score reductions were analysed among those who experienced pain upon admission or in the past 24 hours. Treatment adequacy was measured by the Pain Management Index (PMI) among discharged patients. The PMI was constructed upon worst scores categorised as 0 (no pain), 1 (1-4, mild pain), 2 (5-6, moderate pain), or 3 (7-10, severe pain) which is then subtracted from the most potent level of prescribed analgesic drug scored as 0 (no analgesia), 1 (non-opioid), 2 (weak opioid) or 3 (strong opioid). PMI =0 indicated adequate treatment.
Results: Upon admission, 61.1% [95%CI 0.54:0.69] of 151 patients presented with pain. Of 123 patients who experienced pain upon admission or in the past 24 hours, 82.1% had moderate to severe worst pain. Throughout patients' ward stay until discharge, there was an increased prescribing of analgesics and adjuvants compared to baseline, excluding weak opioids, with strong opioids as the mainstay treatment. For all pain score types (current, worst and least pain within the past 24 hours), means decreased at each time point (24, 48 and 72 hours post-admission and discharge) from baseline, with a significant decrease at 24 hours post-admission (p<0.001). Upon discharge (n=100), treatment adequacy significantly improved (PMI=0 100% versus 68% upon admission, p<0.001).
Conclusions: Accounting for pain's dynamic nature, there was a high prevalence of pain among cancer patients in the palliative care unit. Continuous efforts incorporating comprehensive pain assessments, evidence-based treatments and patient education are necessary to provide adequate pain relief and end-of-life comfort care.
Palmitoylethanolamide (PEA) is a nutraceutical endocannabinoid that was retrospectively discovered in egg yolks. Feeding poor children with known streptococcal infections prevented rheumatic fever. Subsequently, it was found to alter the course of influenza. Unfortunately, there is little known about its pharmacokinetics. Palmitoylethanolamide targets nonclassical cannabinoid receptors rather than CB1 and CB2 receptors. Palmitoylethanolamide will only indirectly activate classical cannabinoid receptors by an entourage effect. There are a significant number of prospective and randomized trials demonstrating the pain-relieving effects of PEA. There is lesser evidence of benefit in patients with nonpain symptoms related to depression, Parkinson disease, strokes, and autism. There are no reported drug-drug interactions and very few reported adverse effects from PEA. Further research is needed to define the palliative benefits to PEA.