La démarche palliative en établissement ainsi que l'appropriation de celle-ci reste encore un enjeu de taille. Le lien étroit entre l'accompagnement des patients en fin de vie et la mise en oeuvre d'une dynamique participative doit susciter l'adhésion de l'ensemble d'une équipe. Une étude qualitative
sous forme de questionnaires auprès d'aide-soignant(e)s et d'infimier(e)s issus de différents services de chirurgies met en évidence un manque de temps, de moyens humains et relationnels pour la réalisation optimale de cette démarche dans la spécialité chirurgicale. Malgré une volonté certaine d'instaurer un staff pluriprofessionnel, il apparaît une méconnaissance de ce modèle "sociétal" destiné à prévenir la souffrance des soigants dans l'exercice de leur profession.
Les services de réanimation sont pourvoyeurs de nombreuses sources de détresse morale et émotionnelle. La mort y est omniprésente, et son accompagnement, bien encadré par les lois, permet au patient de partir avec dignité, et entouré de ses proches. L'accompagnement des familles est un élément de satisfaction et de diminution de l'incidence des complications psychologiques. Pour les soignants il reste encore du travail, notamment dans la prévention du burn-out.
L'auteure analyse les facteurs qui peuvent accroître la vulnérabilité des personnes intellectuellement déficiente. Elle détaille ensuite les éléments qui permettent de protéger ces personnes et de limiter leur risque d'exposition à la maltraitance.
L'auteur s'attache à donner un aspect concret à la prise en charge du corps vulnérable, à travers celui des personnes handicapées. Un des enjeux majeurs est la sollicitation et la mobilisation du corps de ces personnes par le personnel soignant afin de préserver leurs facultés physiques et psychiques.
Healthcare professionals have limited formal end-of-life care training despite the large proportion of hospital deaths. A retrospective review of 201 acute hospital deaths revealed 166 (82.6%) had documentation to suggest the patient was dying but this was performed late with a median time between documentation and death of 0.84 days. Furthermore, 132 (66%) patients received an intervention in the final 48 h of life. This highlights the need to improve the recognition and management of dying patients in acute hospitals.
Malignant wounds are a complication of cancer, and usually occur in those individuals with advanced disease. When healing ceases to be the goal, treatment is centred around symptom control and improving quality of life. Caring for individuals with malignant wounds presents challenges for patients, their families and nurses alike. This article discusses the holistic management of malignant wounds, with an emphasis on the control of both physical and psychosocial symptoms of wound management, as well as the impact that this may have on all those involved. Common physical symptoms of malignant wounds include malodour, bleeding, pain, exudate and pruritis. Psychosocial symptoms may result in social isolation and depression. All these symptoms have a huge impact, not only on patients and their families, but also on healthcare professionals both during and after care. Managing these symptoms requires a multidisciplinary approach to facilitate the best possible outcomes for patients and their caregivers.
Kennedy terminal ulcers, a subset of pressure injuries, are associated with the dying process. This scoping review aimed to identify and map the published literature on Kennedy terminal ulcers in terms of its definition, prevalence, assessment, treatment, management, health care costs, and quality of life for patients in all health care settings. Using the Arksey and O’Malley scoping review framework, we systematically searched the Cochrane Library, CINAHL, EMBASE, MEDLINE, and ProQuest databases and 5 guideline repositories between 1983 and 2018. The following search terms were used: Kennedy ulcers, Kennedy terminal ulcers, terminal ulcer, skin failure, and Skin Changes at Life’s End. Data were extracted using a purposely developed data collection tool. Initial searches yielded 2997 sources, with 32 included in this review. Most Kennedy terminal ulcer literature was published by nurses in the United States. Kennedy terminal ulcer prevalence data are limited, with no validated assessment tools available. Kennedy terminal ulcers may be misclassified as pressure injuries, potentially resulting in financial penalties to the institution. This scoping review revealed significant knowledge and clinical practice gaps in patient assessment, management, and treatment of Kennedy terminal ulcers. Timely patient education may help them to make informed care and quality end-of-life decisions. Further research is needed to inform clinical practice to improve patient care.
BACKGROUND: Palliative transport is transport home of patients requiring critical care transport support with expectation of imminent death. Many parents prefer their child's death at home; evidence suggests death in the preferred location improves bereavement outcomes. Little is known about the clinical and demographic diversity of patients receiving palliative transport or the perspectives of participating staff.
AIM: The objectives of the present study were to (1) characterize demographic and clinical factors involved in palliative transport, (2) identify challenges encountered, and and (3) ascertain staff perspectives.
DESIGN: Ten-year retrospective chart review and cross-sectional staff survey using study-specific questionnaire.
SETTING/PARTICIPANTS: Twenty-three patients had palliative transport from a tertiary pediatric hospital from 2004 to 2013, of which 12 met inclusion criteria. Survey responses from 22 participating staff were received.
RESULTS: The cohort of 12 patients was 58% female, with a mean (range) age of 5.5 (0.01–22) years; racial composition was not significantly different than the palliative care clinical census over the same time period. Distances under 30 miles accounted for 50% of palliative transports. The majority of patients (75%) died within 2 days of palliative transport. Six unanticipated events are described. Staff reported palliative transport as a positive experience, regarding it as an important job component. However, 63% were dissatisfied or undecided about the plan should the patient die enroute, and 48% experienced some level of dissatisfaction with communication.
CONCLUSION: Palliative transport is a feasible option for some patients. Staff experienced palliative transport as valuable, although process concerns were noted. This study underscores the importance of preparedness, training, and education for palliative transports.
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.
The potential association between serotonin syndrome and tapentadol is not well described in the literature. This study aimed to review the literature and identify methodological issues that could lead to inaccurately reported rates of serotonin syndrome associated with tapentadol use. A systematic review of English articles using MEDLINE, Cochrane Controlled Trials Register, and Scopus was performed. Additional studies were identified by cross-referencing article bibliographies. Original research that examined the safety of tapentadol in patients with nonconfounding indications were examined. In total, 22 studies met inclusion criteria. There were 13 randomized clinical trials, 7 open-label trials, and 2 observational studies. All studies either did not mention whether serotonergic medication use was prohibited or disallowed use. Frequently reported adverse events were nausea, diarrhea, constipation, fatigue, vomiting, and somnolence. No studies reported serotonin syndrome development. No included trials differentiated between the development of adverse events in patients taking serotonergic drugs and those who were not. This differentiation is necessary to evaluate the increased risk of adverse events in patients prescribed tapentadol concomitantly with other serotonergic medications. Therefore, the current tapentadol literature has important limitations that prevent the adequate characterization of the potential association between tapentadol and serotonin syndrome.
Delirium is a common problem in terminally ill patients that is associated with significant distress and, hence, considered a palliative care emergency. The three subtypes of delirium are hyperactive, hypoactive, and mixed, depending on the level of psychomotor activity and arousal disturbance. When agitated delirium becomes refractory in the setting of imminent dying, the agitation may be so severe that palliative sedation (PS) is required. Palliative sedation involves the administration of sedative medications with the purpose of reducing level of consciousness for patients with refractory suffering in the setting of a terminal illness. Propofol is a sedative that has a short duration of action and a very rapid onset. These characteristics make it relatively easy to titrate. Reported doses range from 50 to 70 mg per hour. The authors present a case of antipsychotic-resistant agitated delirium treated with a propofol intravenous infusion.
Le système de santé privilégie aujourd’hui la prise en charge de malades au domicile. Au-delà des interrogations d’ordre financier et structurel que cela implique, cela ne va pas sans questionner la notion de vulnérabilité du malade. Mais également la vulnérabilité de chacune des personnes agissant autour du malade au domicile. Le domicile n’est pas un terrain neutre. Il est le lieu de l’intime. Celui qui permet au malade, lorsque sa maladie évolue, de « trouver refuge ». La prise en charge du malade au domicile implique l’intervention d’une équipe médicale. Cette équipe accompagne le malade et ses proches avec des compétences de soignants. Ces caractéristiques médicales rejoignent celles des bénévoles. La complémentarité entre les diverses interventions est un gage de réussite dans la prise en charge du malade et des proches. L’échange d’informations entre tous les protagonistes est un rouage essentiel permettant de minimiser d’éventuels conflits et de rester au plus près du désir du malade. Ce carrefour d’informations pourra également éviter que le malade ne ressente comme une intrusion la venue à son domicile des divers intervenants.
Il est important de noter que l’accompagnement aujourd’hui n’est pas l’apanage des phases terminales. La prise en charge d’un malade se fait dès l’annonce d’une maladie grave, nécessitant que tous les paramètres au-delà du médical soient pris en compte dès la première hospitalisation. Les différentes phases, soins curatifs, soins palliatifs, phase ultime, sont autant d’étapes à reconnaître et à étudier, pour une prise en charge globale de la maladie…
Limited data exist describing the outcomes of patients receiving continuous lidocaine infusions. The objective of this study was to evaluate the effect of use of continuous lidocaine infusions for pain management at a community teaching hospital. A retrospective chart review was performed that included adult patients receiving continuous systemic lidocaine infusions for the treatment of pain. Twenty-one patients were included in the analysis. Dosing ranged from 0.25 to 2.8 mg/kg/h, with a median infusion time of 64 hours. Eight patients (38%) experienced a response (≥20% reduction in pain score during the infusion compared with prior to the infusion). Among responding patients, there was a decrease in pain scores at rest after starting lidocaine (compared with prior to lidocaine) (6.5 vs. 3.7, P = .001) that was maintained 24 hours after lidocaine discontinuation. There were no differences in pain scores before, during, or after lidocaine in the entire study sample. A difference in oral morphine equivalent intake was present comparing usage during the infusion vs. day +1 (P = .006) and day +2 (P < .001). Similarly, a difference was present comparing morphine equivalent usage on day −2 with day +2 (P = .008) and day −1 with day +1 (P = .006). Continuous infusions of systemic lidocaine appear to be beneficial in some patients experiencing uncontrolled pain and may improve pain scores while decreasing opioid requirements. Overall beneficial effects of systemic lidocaine may last longer than the infusion itself.
Cough is a common problem among cancer patients, especially lung cancer patients. Gabapentin has been shown to be effective in reducing cough number and severity in patients with idiopathic refractory cough. The authors report here the successful use of gabapentin at usual doses to treat cough in cancer patients, including two with lung cancer, with minimal side effects. Gabapentin may be a useful addition to the symptom management toolbox for palliation of cancer symptoms.
OBJECTIVES: Older patients with end-stage renal disease are willing participants in advance care planning but just over 10% are engaged in this process. Nephrologists fear such conversations may upset patients and so tend to avoid these discussions. This approach denies patients the opportunity to discuss their end-of-life care preferences. Many patients endure medically intensive end-of-life scenarios as a result. This study aims to explore the rationale underpinning nephrologists' clinical decision-making in the management of older patients with end-stage renal disease and to make recommendations that inform policymakers and enhance advance care planning for this patient group.
METHODS: A qualitative interview study of 20 nephrologists was undertaken. Nephrologists were asked about their management of end-stage renal disease in older patients, conservative management, dialysis withdrawal and end-of-life care. Eligible participants were nephrologists working in Ireland. Five nephrologists participated in a recorded focus group and 15 nephrologists participated in individual digitally recorded telephone interviews. Semistructured interviews were conducted; thematic analysis was used to distil the results.
RESULTS: Three key themes emerged: barriers to advance care planning; barriers to shared decision-making; and avoidance of end-of-life care discussion.
CONCLUSIONS: Advance care planning is not an integral part of the routine care of older patients with end-stage renal disease. Absence of formal training of nephrologists in how to communicate with patients contributes to poor advance care planning. Nephrologists lack clinical experience of conservatively managing end-stage renal disease and end-of-life care in older patients. Key policy recommendations include formal communication skills training for nephrologists and development of the conservative management service.
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.
Introduction: The extremity edema of advanced disease is a common, multifactorial feature, which impairs patients' activities and quality of life. The most frequently chosen management is based on combined decongestive physiotherapy or pharmacotherapy (with diuretics or steroids). Subcutaneous lymphatic drainage in refractory edema may decrease the swelling, prevent spontaneous lymphorrhea, but also increase the risk of infection. Safe and effective conservative management in diuretics-resistant edemas is lacking. The objective of this prospective, observational study was to assess the effectiveness and tolerability of combined physiotherapeutic and diuretic therapy in edemas refractory to parenteral diuretics.
Methods: A group of 19 patients with advanced disease and severe bilateral leg edema resistant to parenteral diuretic therapy were treated for three days with a combination of multilayer short-stretch compression bandaging and furosemide in hypersaline intravenous infusion.
Results: A clinically meaningful decrease in mean limb volume (of 1.52 L; 20.6%; P < 0.0001)-strongly correlating with patients' weight loss (rho = 0.71; P = 0.0001), with a lowering of the intensity of complaints-was achieved. The treatment was well tolerated, without decreasing the performance status in any patient. Stable levels of blood pressure, laboratory kidney profile (potassium, sodium, creatinine clearance), and serum albumin were observed. Maintenance of the achieved results with a good compliance was seen during an informal follow-up at the hospice.
Conclusion: The combination of compression therapy with hypersaline diuretics could be considered as a valuable option for refractory cases of limb edema in advanced disease.
Objective: Little data about the management of drugs in terminally ill palliative care cancer patients is available. The present study aimed at describing the evolution of anticancer and non-anticancer treatments (NACTs) in cancer patients in palliative care units. The second objective was to identify factors leading to the medical decision to withdraw or not NACTs.
Methods: Data from 1,091 cancer patients hospitalized in palliative care units were prospectively collected in 2010-2011, through a multicenter, observational French cohort.
Results: The median overall survival after admittance in palliative care units was 15 days. Specific anticancer treatments were systematically stopped in the first 24 h in palliative care units, but for 4.5% of patients. Regarding NACTs, patients were heavily treated with strong opioids (74%), corticosteroids (51%), and antidepressants (21.8%) until death. Antiulcer agents (63.4%), antibiotics (25.7%), thrombosis prevention (21.8%), antidiabetics (7.6%), and transfusions (4%) were often also continuously prescribed. In multivariate analysis, ECOG PS 4 was an independent predictor of continuous prescription of morphine and an independent predictor of discontinuation of corticosteroids, proton-pump inhibitors, antidiabetics, and preventive anticoagulant therapy. Infection symptoms independently predicted continuous prescription of paracetamol. Paralysis and cancer palpable mass independently predicted corticosteroid withdrawal. Brain metastases independently predicted antiulcer withdrawal. Hemorrhage independently predicted preventive anticoagulant withdrawal. Availability to a venous access independently predicted paracetamol and antiulcer continuous prescriptions. Co-prescriptions independently predicted continuous prescriptions (antibiotics with antiulcer, antifungals with antibiotics) or withdrawal (preventive anticoagulant with antiplatelets and antifungals).
Conclusions: NACT prescription remained commonplace in terminally ill palliative cancer patients, although their benefit is questionable.
Context: Nearing death, hospice patients are increasingly unable or unwilling to self-report their symptom intensity and rely on nurses' assessments.
Objectives: We hypothesized that concordance between patients' and nurses' assessments of symptom intensity improves over time.
Method: A prospective longitudinal study was conducted from January 2012 to June 2015 using dyads of patient- and nurse-reported outcome measures, collected in daily hospice practice in the first three weeks after admission. Main outcomes were symptom intensity and well-being, measured using the Utrecht Symptom Diary (USD) and USD-Professional. Absolute concordance was the proportion of dyads with no difference in scores between USD and USD-Professional per week after admission. For agreement beyond chance, the squared weighted Kappa for symptom intensity and the one-way agreement intraclass correlation coefficient for well-being were used.
Results: The most prevalent symptoms, fatigue, dry mouth, and anorexia also had the highest intensity scores assessed by patients and nurses. Symptom intensity was underestimated more frequently than overestimated by the nurses. The absolute concordance was fair to good (35%-69%). Agreement beyond chance was low to fair (0.146-0.539) and the intraclass correlation for well-being was low (0.25-0.28). Absolute concordance and agreement beyond chance did not improve over time.
Conclusion: Concordance between patients' and nurses' assessment of symptom prevalence is good, and both patients and nurses reveal identical symptoms as most and least prevalent and intense. However, nurses tend to underestimate symptom intensity. Concordance between patients and nurses symptom intensity scores is poor and does not improve over time.
Introduction: Older patients with hip fracture have a 20% to 30% mortality rate in the year after surgery. Nonoperative care has higher 1-year mortality rates and is generally only pursued in those with an extraordinarily high surgical risk. As the population ages, more patients with hip fracture may fall into this category. The orthopedic surgeon is typically the main consultant responsible for deciding between surgery and conservative management, and the reasoning behind one decision over the other is often poorly understood. We undertook a review to determine decision-making tools for surgery in high-risk patients with hip fracture.
Materials and Methods: A review was conducted using PubMed to determine articles published using the terms palliative care, conservative care, nonoperative, hip fracture, orthopedic procedures, fracture fixation, and surgery. Our search resulted in 13 articles to review. These were further screened to determine tools for use in surgical decision-making.
Results: Several potential decision-making tools were found in our search. The potential tools to identify patients who would benefit from nonoperative treatment included the Palliative Performance Scale for severe dementia, the Lawton Instrumental Activities of Daily Living and Katz Activities of Daily Living scales for prefracture immobility, a combination of clinical signs and laboratory tests to determine risk of imminent death, and the Charlson Comorbidity Score for additional serious comorbidities. No tools have been prospectively tested in a clinical setting.
Discussion: Evaluation of each patient using a variety of decision making tools should help the orthopedic surgeon determine which patients would be better suited to non-operative management. After determining the benefit of non-operative care, they must effectively allow the fracture to heal while ameliorating pain. Palliative care physicians can fulfill this role by providing support and symptom relief.
Conclusions: Surgical decision-making for hip fracture repair in the elderly patients is not straight forward. Several tools may be helpful to the surgeon in determining who may be better suited for nonoperative care or a palliative care referral. Prospective data do not exist in these decision-making tools.