Les soins palliatifs et l’accompagnement des mourants s’inscrivent dans le mouvement plus large d’individualisation de la mort. Centrée sur la notion d’autonomie, la mort idéale se veut aujourd’hui discrète, inconsciente et hygiénique. Impensable sans une importante expertise médicale qui permet de soulager la douleur physique, de contrôler chimiquement l’angoisse et la peur, de neutraliser les odeurs et les traces de l’agonie, cet idéal suppose une tension constante entre contrôle et dépendance. Emblématique de ce que le sociologue Nikolas Rose nomme la biocitoyenneté, soit une forme de citoyenneté centrée sur une politisation de la santé individuelle et sur l’émergence de revendications identitaires reliées à des questions d’ordre biomédical, le mouvement en faveur des soins palliatifs s’inscrit en fait dans le processus global de pharmaceuticalisation caractérisant les sociétés occidentales contemporaines. Partant d’un questionnement sociologique sur l’usage croissant de la sédation profonde dans la gestion biomédicale de la fin de vie, cet article propose d’analyser le phénomène du contrôle médicamenteux de la souffrance sous l’angle de la pharmaceuticalisation. Au-delà de la thèse du déni de la mort et du refus de la douleur, il s’agira plutôt de comprendre que la sédation profonde est indissociable d’une volonté de contrôle et d’optimisation de soi propre à la biocitoyenneté. Loin d’un simple refus de la douleur, la norme de la sédation profonde indique plutôt que la douleur « improductive », c’est-à-dire celle qui ne s’inscrit pas dans une logique thérapeutique, méliorative ou expérimentale, tant à devenir socialement intolérable. La sédation profonde apparaît ainsi à la fois comme la limite et l’expression ultime de la biocitoyenneté.
Background: Maintenance of medications that are unconducive to the quality of life is difficult to justify in dying terminally-ill cancer patients.
Objective: We aimed at determining the prevalence of administering antidiabetic, antihypertensive, and lipid-lowering medications to elderly patients dying with cancer.
Methods: We reviewed the medical records of patients above 60 years of age with advanced cancer who died in a palliative care unit. The collected data included the use of antidiabetic, antihypertensive, and lipid-lowering medications during the last week of life.
Results: Of 103 patients, 51.5% were female and the median age was 69 years. The most common cancers included gastrointestinal (40.8%), gynecological (13.6%), and head and neck (12.6%). All patients had advanced cancer and 59.2% had hypertension, 52.4% had diabetes mellitus, and 19.4% had dyslipidemia. During their last week of life, 38.8% received antidiabetic, 23.3% received antihypertensive, and 3.9% received lipid-lowering agents. The data showed that 68.5% of people with diabetes received antidiabetic medications, 37.7% of hypertensive patients received antihypertensive medications, and 20% of dyslipidemics received lipid-lowering agents. Hypoglycemia was reported in 7.5% of patients receiving antidiabetic drugs, while hypotension was reported in 66.7% of patients receiving antihypertensive agents.
Conclusion: Many elderly patients dying with advanced cancer in a palliative care unit were maintained on medications for chronic conditions until the very late stages of their lives. For such imminently dying patients, benefits of such medications are unlikely and burdens are possible. Further research is needed to explore physicians' justifications, if any, for maintaining such patients on apparently futile medications.
BACKGROUND: Respiratory distress protocols (RDPs) are protocolized prescriptions comprised of 3 medications (a benzodiazepine, an opioid, and an anticholinergic) administered simultaneously as an emergency treatment for respiratory distress in palliative care patients in the province of Quebec, Canada. However, data on appropriate use that justifies the combination of all 3 components is scarce and based on individual pharmacodynamic properties along with expert consensus.
OBJECTIVES: Our study aimed to evaluate the conformity and the effectiveness of RDPs prescribed and administered to hospitalized adult patients.
METHODS: This was a prospective and descriptive study conducted in a single center. Prescription and administration conformity were assessed based on predefined appropriateness criteria.
RESULTS: A total of 467 adult patients were prescribed a RDP, 175 administrations were documented, and 78 patients received at least 1 RDP. Prescription conformity was assessed on 1473 separate occasions over the trial period. Overall prescription conformity was found to be 37% (95% confidence interval [CI]: 33.6-40.4), and administration conformity was 37.7% (95% CI: 26.2-50.7). Low administration conformity was primarily explained by incorrect indications for RDP use. Seemingly important determinants of higher conformity were prescriber's speciality in palliative care, use of preprinted orders, pharmacist involvement, and hospitalization in the palliative care unit.
CONCLUSION: This study highlights important gaps in the use of RDPs in our institution. Health-care provider training appears necessary in order to ensure adequate conformity and allow for further evaluation of RDP effectiveness.
OBJECTIVE: Older people approaching the end of life are at high risk for adverse drug reactions. Approaching end of life should change the therapeutic aims, triggering a reduction in the number of drugs. The main aim of this study was to describe the preventive and symptomatic drug treatments prescribed to patients discharged from internal medicine and geriatric wards, with limited life expectancy. The secondary aim was to describe the potentially severe DDIs.
MATERIALS AND METHODS: We analyzed Registry of Polytherapies Societa Italiana di Medicina Interna (REPOSI), a network of internal medicine and geriatric wards, to describe the drug therapy of patients discharged with limited life expectancy.
RESULTS: The study sample comprised 55 patients discharged with limited life expectancy. Patients with at least one preventive medication that could be considered for de-prescription at end-of-life were significantly fewer from admission to discharge (30; 54.5% and 21; 38.2%, p = 0.02). ACE inhibitors, angiotensin II receptor blockers, calcium channel blockers, lipid-lowering drugs and clonidine were the most frequent potentially avoidable medications prescribed at discharge, followed by xanthine oxidase inhibitors and drugs to prevent fractures. Thirty-seven (67.3%) patients were also exposed to at least one potentially severe drug-drug interaction at discharge.
CONCLUSION: Hospital discharge is associated with small reductions in the use of commonly prescribed preventive medications in patients discharged with limited life expectancy. Cardiovascular drugs are the most frequent potentially avoidable preventive medications. A consensus framework, or shared criteria for potentially inappropriate medication in elderly patients with limited life expectancy could be useful to further improve drug prescription.
BACKGROUND: Intractable pruritus affects an estimated 83% of patients with advanced cutaneous T-cell lymphoma. Palliative care strategies to improve outcomes for these patients are lacking. Lignocaine antagonises kappa opioid antagonist-induced scratching in mice models and may relieve cutaneous T-cell lymphoma-pruritus.
PRACTICE CHALLENGE: The aim of this retrospective case series was to evaluate our clinical experience with low-dose continuous subcutaneous infusion lignocaine for intractable pruritus associated with cutaneous T-cell lymphoma, from 2000 to 2015. The study received approval from Retrospective Review Panel, Division Cancer Medicine, 12 October 2015, V1.1.
METHOD: Baseline demographics including cutaneous T-cell lymphoma diagnosis and management, comorbidities, and pruritus-related evaluation including onset, severity, past and current therapies were collected. Response categories (Complete, Partial, No, Unknown) were devised for the study, based on severity of pruritus, impact on sleep and mood. The mean of responses was calculated for each patient and across the series.
OUTCOME: Nineteen patients received continuous subcutaneous infusion lignocaine, in 45 treatment episodes, ranging from 1 to 70 days (interquartile range = 5). Baseline mean number of adjuvants was 3.9 (range, 1–9). Across the series, complete response was achieved, on average, 26.7% days, partial response 49.4%, no response 16.1% and unknown response 9.2%. Drowsiness was documented in four patients. Three patients died during continuous subcutaneous infusion due to disease progression.
LESSONS: Continuous subcutaneous infusion lignocaine offers another therapeutic option in cutaneous T-Cell lymphoma-related intractable pruritus.
FUTURE RESEARCH: Prospective studies using validated assessment tools and systematic approaches to pruritus management are required.
BACKGROUND: Musculoskeletal sarcomas (MSSs) are rare cancers and often aggressive tumors that originate from mesenchymal tissue. Patients with advanced MSS often report difficulties with symptom burden, which can reduce their health-related quality-of-life.
OBJECTIVE: The aim of this study was to describe the patterns of the physical symptoms of MSS patients in the palliative setting and to detail the palliative treatment used in the last two weeks of life.
DESIGN: Retrospective study using the electronic patient records from a single institution.
SETTING/SUBJECTS: A retrospective study was carried out in a sample of 46 consecutive MSS patients with locally advanced/metastatic disease, who were hospitalized and died in our department. The median age of these patients was 56 years at death.
MEASUREMENTS: Symptom burden and medical intervention during the last two weeks of life were collected.
RESULTS: The most frequent physical symptoms were pain and dyspnea in 93% and 78% of patients, respectively, while only 17% of patients suffered from nausea. A total of 98% of patients required opioids, and most patients were treated with morphine through either subcutaneous or intravenous continuous injection. Nonsteroidal anti-inflammatory drugs and acetaminophen were administered to 79% of patients. Corticosteroids were administered for the relief of dyspnea to 83% of patients. Of the patients, 46% received palliative chemotherapy within the last two weeks of life, and the oral treatment was continued until a median of 5.6 days before death. In addition, 39% of patients received a sedative treatment during the last two weeks of life for uncontrolled refractory symptoms.
CONCLUSIONS: The symptom burden experienced by advanced MSS patients is profound at the end of life for all palliative approaches. Therefore, palliative medicine is an important and even crucial component of the continuum of care, allowing for aggressive symptom management with a variety of medical interventions, including palliative sedation.
Terminal secretions is a common symptom seen in hospice patients. Antimuscarinic drugs are commonly used to treat this symptom despite a lack of supporting data. Wide variability in cost exists among these treatments. Hospice program data were assessed to identify high-use and high-cost medications. An educational intervention (EI) was developed to target one such medication, transdermal scopolamine. The EI focused on efficacy, safety, and actual cost (by unit and total expenditure) for each possible treatment of terminal secretions. Following the EI, drug utilization data was re-evaluated. Prior to the deployment of the EI, total monthly hospice drug costs averaged $91,405 (SD 1,444) with an average drug cost per patient per day of $11.42 (SD 0.54). Monthly costs of drugs frequently employed to treat terminal secretions averaged $7,187.67 (SD 2,253) pre-intervention. Following the EI, monthly drug costs decreased 22.5%, average daily patient drug costs decreased 11.1%, and total anti-secretion costs decreased 28.5% after adjusting for difference in census. Education regarding the use and cost of medications to treat symptoms at end-of-life in hospice patients can be an intervention used to lead to significant cost savings to hospice organizations while maintaining appropriate symptom management for patients. Future interventions to target additional high-cost medications are warranted.
This study aimed to determine the range of mean cumulative corticosteroid doses that could effectively palliate dyspnea in opioid-treated patients with terminal cancer and to investigate the demographic or biochemical factors predictive of corticosteroid responsiveness. To this end, responders and nonresponders were compared with regard to corticosteroid dose and whether they had initiated opioid use before or concomitantly with corticosteroid use. A logistic regression analysis was conducted to assess the impacts of demographic and biochemical factors on corticosteroid effectiveness. The final sample comprised 20 patients who satisfied the selection criteria. The responders accounted for 70% of the total sample (n = 14) and experienced the strongest effect with regard to dyspnea palliation at a mean cumulative dose equivalent to 64.4 mg prednisolone. However, no factors predictive of response were identified. In summary, this retrospective study identified effective corticosteroid doses for dyspnea alleviation in terminal cancer patients. Although our study sample was limited in size, the results support further prospective research.
Technology that can improve the ability to provide quick symptom control while decreasing the cost and burden of care could help hospice agencies deal with current hospice industry challenges. This paper describes how the use of a new rectal medication delivery technology at a large hospice in western New York has improved patient care and nursing efficiency while at the same time decreasing the cost of care.
Background: Cancer patients have a four- to fivefold greater risk of thrombosis than the general population. Recommended treatment for cancer-associated thrombosis is 3â€“6 months of low-molecular-weight heparin. The â€˜select-dâ€™ trial is an open-label, randomised, multi-centre pilot trial in patients with cancer-associated thrombosis, utilising dalteparin (low-molecular-weight heparin) versus rivaroxaban (a direct oral anticoagulant), to assess effectiveness and safety.
Aim: To explore patient and informal carersâ€™ experiences of cancer-associated thrombosis and their experience and understanding of the riskâ€“benefit of thrombosis treatment.
Design: Qualitative substudy of the select-d trial, using semi-structured interviews. Interviews were audio-recorded and transcribed. Data were analysed using Framework Analysis.
Participants: Participants were purposively sampled (n = 37 patients; 46% male; age 40â€“89; 9 with carer present).
Results: Three themes were found: experience of cancer-associated thrombosis, experience of anticoagulation and riskâ€“benefit balance of the two modes of administration. Some were shocked by their thrombosis diagnosis (most were unaware of their risk), but others found it insignificant compared with cancer. Most patients found tablets more convenient, but injections were acceptable in the context of having cancer. While most were happy to follow medical advice, others weighed preference on the basis of effectiveness.
OBJECTIVE: Evaluating the degree of cognition, functionality, presence of symptoms and medications prescribed for patients under palliative home care.
METHOD: Descriptive, cross-sectional study where 55 patients under palliative home care were interviewed. Cognition was evaluated using the Mini-Mental state examination (MM), with patients being separated into two groups: with preserved cognitive ability (MM>24), or altered (MM <24). The functionality was verified by the Palliative Performance Scale (PPS) and the patients were divided into two groups: PPS=50 and PPS=60. The symptoms presence was evaluated by ESAS (Edmonton Symptom Assessment System) being considered as mild (ESAS 1-3), moderate (ESAS 4-6) or severe (ESAS 7-10) symptoms. Medications prescribed to control the symptoms were registered. Statistical analysis used Student's t test (p <0.05).
RESULTS: Most of the 55 patients were women (63.6%), 70.9% of these had MM> 24, 83.6% had PPS <50 and 78.2% presented chronic non-neoplastic degenerative disease. There was a significant relationship between PPS=50 and MM=24. Symptoms were present in 98% of patients. Asthenia was more frequently reported and was not treated in 67% of the cases. Severe pain was present in 27.3%: 46% without medication and 13% with medication, if necessary. Most patients with severe dyspnea used oxygen.
CONCLUSIONS: Most of the analysed patients had their cognition preserved, presented low functionality and 98% reported the presence of symptoms. Severe pain was present in almost 1/3 of the patients without effective treatment. Re-evaluate palliative home care is suggested to optimize patient's quality of life.
Home-care nurses assist many advanced cancer patients desiring to live in the familiar surroundings of their own home until the day they die. The purpose of this study was to increase the understanding concerning home-care nurse experience with the Norwegian version of the medication kit as a tool in symptom management for the terminally ill. The study had a qualitative, descriptive, and explorative design, based on hermeneutic methodology. Two focus group interviews with 4 subsequent in-depth interviews helped generate data. The nurses reported how thorough planning and clear instructions on medication kit usage gave security and facilitated proper application. Good collaboration with primaryphysicians, including accessibility and clarifying meetings in particular, was necessary. In the past, infrequent use of the medication kit hindered its relevance for symptom management. Home-care nurses were often alone with the responsibility for assessing the patient and administering medications, leading to unjustifiable professional conditions, particularly during night shifts. Thus, clear guidelines, planning and clarifying meetings with primary physicians, helped to facilitate the use of the medication kit.
The results of research on selected drugs used in palliative care are presented, including fentanyl, tramadol, metoclopramide, hyoscine butylbromide, midazolam, haloperidol, levomepromazine and clonazepam. Interpretation of their ESI mass spectra obtained by the use of a triple quadrupole linear ion trap mass spectrometer is given. As a result, fragmentation pathways described in the literature are complemented and presented with more details. On their basis, transitions for quantitative analysis are selected and chromatographic conditions for the determination of the palliative care drugs are proposed as well. These results enable future studies on palliative care drugs in elderly patients including both their quantitation in body fluids and easier identification of their metabolites.
Introduction: Very little has been written on seizure management in palliative care (PC). Given this situation, and considering the forthcoming setting up of the Palliative Care Unit at our neurorehabilitation centre, the Clínica San Vicente, we decided to establish a series of guidelines on the use of antiepileptic drugs (AEDs) for handling seizures in PC.
Methods: We conducted a literature search in PubMed to identify articles, recent manuals, and clinical practice guidelines on seizure management in PC published by the most relevant scientific societies.
Results: Clinical practice guidelines are essential to identify patients eligible for PC, manage seizures adequately, and avoid unnecessary distress to these patients and their families. Given the profile of these patients, we recommend choosing AEDs with a low interaction potential and which can be administered by the parenteral route, preferably intravenously. Diazepam and midazolam appear to be the most suitable AEDs during the acute phase whereas levetiracetam, valproic acid, and lacosamide are recommended for refractory cases and long-term treatment.
Conclusions: These guidelines provide general recommendations that must be adapted to each particular clinical case. Nevertheless, we will require further well-designed randomised controlled clinical trials including large samples of patients eligible for PC to draft a consensus document recommending adequate, rational, and effective use of AEDs, based on a high level of evidence, in this highly complex area of medical care.
Patients with a limited life expectancy use many medications, some of which may be questionable.
OBJECTIVES : To identify possible solutions for difficulties concerning medication management and formulate recommendations to improve medication management at the end of life.
METHODS : A two-round Delphi study with experts in the field of medication management and end-of-life care (based on ranking in the citation index in Web of Science and relevant publications). We developed a questionnaire with 58 possible solutions for problems regarding medication management at the end of life that were identified in previously performed studies.
RESULTS : A total of 42 experts from 13 countries participated. Response rate in the first round was 93%, mean agreement between experts for all solutions was 87 % (range 62%-100%); additional suggestions were given by 51%. The response rate in the second round was 74%. Awareness, education and timely communication about medication management came forward as top priorities for guidelines. In addition, solutions considered crucial by many of the experts were development of a list of inappropriate medications at the end of life and incorporation of recommendations for end-of-life medication management in disease-specific guidelines. CONCLUSIONS : In this international Delphi study, experts reached a high level of consensus on recommendations to improve medication management in end-of-life care. These findings may contribute to the development of clinical practice guidelines for medication management in end-of-life care.
BACKGROUND:: Distressing and potentially life-threatening events, such as significant external bleeding, may occur in patients with a known terminal condition. These events are often referred to as catastrophic or crisis events. Pharmacological management varies and there is little evidence to guide practice.
AIM: The aim of this study was to explore Australasian palliative medicine doctors' approaches to pre-emptive prescription of medications to manage catastrophic events.
DESIGN:: Anonymous survey data were collected electronically.
SETTING/PARTICIPANTS:: Australian and New Zealand palliative medicine fellows and trainees were surveyed.
RESULTS: Surveys were completed by 121 doctors; 108 (89.2%) who care for adult patients only and 13 (10.8%) who care for paediatric patients or paediatric and adult patients. In all, 74 (61.2%) respondents pre-emptively prescribed medications at least five times per year, and most orders were never administered. Significant visible bleeding and severe, acute airway obstruction were almost universally considered catastrophic events. Many respondents expressed concern about the lack of evidence to guide pre-emptive medication prescription in this setting. Clinicians reported adverse events related to pre-emptive medication orders being available (n = 30, 24.8%), as well as orders not being available (n = 61, 50.4%).
CONCLUSION:: Our study supports the need for guidelines, as well as formal education programmes for medical trainees and nursing staff about this important area of practice.
BACKGROUND: Anticipatory medications (AM) have been widely used in various settings across many countries in people approaching end of life. Access to palliative care in rural and remote areas of Australia is lacking as are other medical services when compared with the metropolitan setting. Our aim is to identify challenges with the administration and access to AM in rural and remote communities with outcomes to guide improved delivery of care.
METHODS: An online survey administered using Qualtrics, a secure survey platform was distributed to a total of 18 managers from 18 rural and remote organizations across the South East of Victoria in Australia. The survey was distributed to a total of 108 nurses working in these organizations.
RESULTS: A total of 29 nurses completed the survey (response rate 28%). Most of the nurses were working in a mixed practice providing community palliative and district nursing. A significant number of nurses (n = 9, 31%) were working in remote settings and the remainder were located in regional areas. Almost a third of all nurses surveyed did not have specific guidance regarding the use of AM for their patients. Opioids (55%) were by far the most commonly used AM followed by antiemetics (45%). The most common decisions taken by nurses to administer AM were cited as patient deterioration or in their terminal phase with a fluctuating level of anxiety, and patients agitation. Access to AM and lack of staff education were major challenges in rural and remote areas.
CONCLUSIONS: Provision of timely AM has the potential to improve the quality of life of patients and their caregivers. Key barriers to access AM can be overcome with community-level planning and nurses' education. Advanced nurses' roles have the opportunity to provide specialized care where access to specialist physicians is challenging.
BACKGROUND: Limited benefit medications (LBMs), those medications with questionable benefit at the end of life, are often recommended for discontinuation in hospice patients. Transitions in care are associated with inappropriate prescribing in older and terminally ill populations.
OBJECTIVES: To evaluate the association between burdensome health care transitions and subsequent receipt of LBMs in older hospice patients.
METHODS: We conducted a matched cohort analysis of patients admitted to hospice between 2008 and 2013 using the Surveillance, Epidemiology, and End Results (SEER)-Medicare linked database. The prevalence of post-health care transition LBM use was assessed. Adjusted incidence rate ratios (IRRs) were estimated for the association between transitions and subsequent receipt of LBMs.
RESULTS: In total, 17.9% of 7064 hospice patients received at least 1 LBM following their first burdensome health care transition. Posttransition continuation of a medication class used before hospice admission was most common for antidementia medications (14.2%) and antihypertensives (11.2%). Transitions were associated with a 33% increase in the risk of receiving at least 1 LBM [IRR, 1.33; 95% confidence interval (CI), 1.25-1.42], increasing to 56% when evaluating only hospitalization transitions (IRR, 1.56; 95% CI, 1.39-1.76). Medication classes more likely to be dispensed after a transition included antihyperlipidemics (IRR, 1.38; 95% CI, 1.13-1.70), antihypertensives (IRR, 1.28; 95% CI, 1.16-1.40), and proton-pump inhibitors (IRR, 1.40; 95% CI, 1.20-1.63).
CONCLUSIONS: Burdensome health care transitions were associated with the receipt of nonpalliative medications in older hospice patients. Interventions aimed at improving provider communication and reducing fragmentation in care may help reduce unnecessary medication use in this vulnerable population.
OBJECTIVES: To summarize available tools that can assist clinicians in identifying and reducing or stopping (deprescribing) potentially inappropriate medications and that specifically consider frailty or limited life expectancy.
DESIGN: Systematic review and narrative synthesis.
SETTING: We searched MEDLINE (via Ovid SP), EMBASE (via Ovid SP), and CINAHL from inception to December 2017, along with grey literature. We included articles that described a tool to guide deprescribing of medications.
PARTICIPANTS: Frail older persons and older persons with limited life expectancy.
MEASUREMENTS: Narrative description of tools.
RESULTS: We identified 15 tools and organized them into three main categories: tools (n = 2) that described a model or framework for approaching deprescribing, tools (n = 9) that outlined a deprescribing approach for the entire medication list, and tools (n = 4) that provided medication-specific advice. The complexity of the tools ranged from simple lists to detailed, step-wise protocols. The development methodology varied widely, and the methods used to synthesize the tools were generally not well described. Most tools were based on expert opinion. Only four of the 15 tools have been tested in clinical practice (in very low-quality studies).
CONCLUSION: Tools exist to help clinicians deprescribe in frail older persons and those with limited life expectancy. These tools may assist clinicians at various stages in the deprescribing process. However, it remains to be investigated whether use of such tools in practice is likely to improve clinical outcomes or reduce inappropriate medication use.