Objectives: To develop a staff training intervention for agitation in people with severe dementia, reaching end-of-life, residing in nursing homes (NHs), test feasibility, acceptability, and whether a trial is warranted.
Design: Feasibility study with pre- and post-intervention data collection, qualitative interviews, and focus groups.
Setting: Three NHs in South East England with dementia units, diverse in terms of size, ownership status, and location.
Participants: Residents with a dementia diagnosis or scoring =2 on the Noticeable Problems Checklist, rated as “severe” on Clinical Dementia Rating Scale, family carers, and staff (healthcare assistants and nurses).
Intervention: Manualized training, delivered by nonclinical psychology graduates focusing on agitation in severe dementia, underpinned by a palliative care framework.
Measurements: Main outcomes were feasibility of recruitment, data collection, follow-up, and intervention acceptability. We collected resident, family carer, and staff demographics. Staff provided data on resident’s agitation, pain, quality of life, and service receipt. Staff reported their sense of competence in dementia care. Family carers reported on satisfaction with end-of-life care. In qualitative interviews, we explored staff and family carers’ views on the intervention.
Results: The target three NHs participated: 28 (49%) residents, 53 (74%) staff, and 11 (85%) family carers who were eligible to participate consented. Eight-four percent of staff attended =3 sessions, and we achieved 93% follow-up. We were able to complete quantitative interviews. Staff and family carers reported the intervention and delivery were acceptable and helpful.
Conclusions: The intervention was feasible and acceptable indicating a larger trial for effectiveness may be warranted.
Background: The role of neuroleptics for terminal agitated delirium is controversial. We assessed the effect of three neuroleptic strategies on refractory agitation in patients with cancer with terminal delirium.
Methods: In this single-centre, double-blind, parallel-group, randomised trial, patients with advanced cancer, aged at least 18 years, admitted to the palliative and supportive care unit at the University of Texas MD Anderson Cancer Center (Houston, TX, USA), with refractory agitation, despite low-dose haloperidol, were randomly assigned to receive intravenous haloperidol dose escalation at 2 mg every 4 h, neuroleptic rotation with chlorpromazine at 25 mg every 4 h, or combined haloperidol at 1 mg and chlorpromazine at 12·5 mg every 4 h, until death or discharge. Rescue doses identical to the scheduled doses were administered at inception, and then hourly as needed. Permuted block randomisation (block size six; 1:1:1) was done, stratified by baseline Richmond Agitation Sedation Scale (RASS) scores. Research staff, clinicians, patients, and caregivers were masked to group assignment. The primary outcome was change in RASS score from time 0 to 24 h. Comparisons among group were done by modified intention-to-treat analysis. This completed study is registered with ClinicalTrials.gov, NCT03021486.
Findings: Between July 5, 2017, and July 1, 2019, 998 patients were screened for eligibility, with 68 being enrolled and randomly assigned to treatment; 45 received the masked study interventions (escalation n=15, rotation n=16, combination n=14). RASS score decreased significantly within 30 min and remained low at 24 h in the escalation group (n=10, mean RASS score change between 0 h and 24 h -3·6 [95% CI -5·0 to -2·2]), rotation group (n=11, -3·3 [–4·4 to -2·2]), and combination group (n=10, -3·0 [–4·6 to -1·4]), with no difference among groups (p=0·71). The most common serious toxicity was hypotension (escalation n=6 [40%], rotation n=5 [31%], combination n=3 [21%]); there were no treatment-related deaths.
Interpretation: Our data provide preliminary evidence that the three strategies of neuroleptics might reduce agitation in patients with terminal agitation. These findings are in the context of the single-centre design, small sample size, and lack of a placebo-only group.
Funding: National Institute of Nursing Research.
BACKGROUND AND OBJECTIVES: Agitation is common in people living with dementia especially at the end of life. We examined how staff interpreted agitation behavior in people with dementia nearing end of life, how this may influence their responses and its impact on the quality of care.
RESEARCH DESIGN: Ethnographic study. Structured and semi-structured non-participant observations (referred to subsequently in this paper as "structured observations") of people living with dementia nearing the end of life in hospital and care homes (south-east England) and in-depth interviews with staff, conducted August 2015-March 2017.
METHODS: Three data sources: 1) detailed field notes, 2) observations using a structured tool and checklist for behaviors classed as agitation and staff and institutional responses, 3) staff semi-structured qualitative interviews. We calculated the time participants were agitated and described staff responses. Data sources were analyzed separately, developed continuously and relationally during the study and synthesized where appropriate.
RESULTS: We identified two main 'ideal types' of staff explanatory models for agitation: In the first, staff attribute agitated behaviors to the person's "moral judgement", making them prone to rejecting or punitive responses. In the second staff adopt a more "needs-based" approach in which agitation behaviors are regarded as meaningful and managed with proactive and investigative approaches. These different approaches appear to have significant consequences for the timing, frequency and quality of staff response. While these models may overlap they tend to reflect distinct organizational resources and values.
CONCLUSIONS: Care worker knowledge about agitation is not enough, and staff need organizational support to care better for people living with dementia towards end of life. Positional theory may help to explain much of the cultural-structural context that produces staff disengagement from people with dementia, offering insights on how agitation behavior is reframed by some staff as dangerous. Such behavior may be associated with low-resource institutions with minimal staff training where the personhood of staff may be neglected.
OBJECTIVES: At the end of life oral fluid intake is often reduced. Consensus about the most appropriate management for terminally ill patients with limited oral fluid intake is lacking. The objective of this study is to investigate to what extent the amount of fluid intake, preceding and during the dying phase, is related to the occurrence of death rattle and terminal restlessness.
METHODS: A multicentre prospective observational study was performed. Data on the occurrence of death rattle and terminal restlessness, fluid intake and opioid use of patients expected to die within a few days or hours were collected.
RESULTS: 371 patients were included. Death rattle was reported at least once in 40% (n=149) of patients during the dying phase. Death rattle occurrence was not associated with the amount of fluid intake during the days before dying. Terminal restlessness was reported in 26% of patients (n=96). Terminal restlessness was not associated with a lower amount of fluid intake during the days before dying. Terminal restlessness during the last 24 hours of life was associated with a higher amount of fluid (ie, >250 mL/day) during 48–25 hours before death.
CONCLUSIONS: Caution with fluid intake to prevent development of death rattle does not seem to be necessary. Our study suggests that a higher amount of fluid intake during 48–25 hours before death may be associated with the occurrence of terminal restlessness during the last 24 hours of life. These results suggest that actively providing dying patients with artificial fluid may not be beneficial.
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.
PURPOSE OF REVIEW: To provide an evidence-based synopsis on the role of benzodiazepines in patients with agitated delirium.
RECENT FINDINGS: Existing evidence supports the use of benzodiazepines in two specific delirium settings: persistent agitation in patients with terminal delirium and delirium tremens. In the setting of terminal delirium, the goal of care is to maximize comfort, recognizing that patients are unlikely to recover from their delirium. A recent randomized trial suggests that lorazepam in combination with haloperidol as rescue medication was more effective than haloperidol alone for the management of persistent restlessness/agitation in patients with terminal delirium. In patients with refractory agitation, benzodiazepines may be administered as scheduled doses or continuous infusion for palliative sedation. Benzodiazepines also have an established role in management of delirium secondary to alcohol withdrawal. Outside of these two care settings, the role of benzodiazepine remains investigational and clinicians should exercise great caution because of the risks of precipitating or worsening delirium and over-sedation.
SUMMARY: Benzodiazepines are powerful medications associated with considerable risks and benefits. Clinicians may prescribe benzodiazepines skillfully by selecting the right medication at the right dose for the right indication to the right patient at the right time.
Objectives: Delirium is often associated with alterations to the sleep-wake cycle and it is stated that agitation is more common at evening and night that on other periods. However, in the medical literature, there are any research data supporting this aspect. The objective of this study is to verify if there is any period where agitation is more frequent in patients with delirium.
Methods: The records of the time of episodes of agitation were assessed to check if there are different frequencies during the day.
Results: This study was carried out between 18 June 2007 and 31 December 2013. The protocol was used 584 times in 135 patients. One hundred two (76%) were males and the mean age was 65.75 years (SD ± 12.09). The most frequent diagnosis was head and neck cancer, 37 (27%). There was an uneven distribution of the episodes of agitation during the day. They started to rise from 4 PM, picked at the 2-hour period 22:00–24:00 hours and decreased until 6 AM. Those differences are statistically significant (P<0 .001).
Significance of Results: This study shows that agitation is more frequent at evening and night in patients with delirium.
BACKGROUND: The provision of pediatric palliative care in Asia Pacific varies between countries and availability of essential medications for symptoms at the end of life in this region is unclear.
OBJECTIVE: To determine medications available and used in the management of six symptoms at the end of life among pediatric palliative care practitioners in Asia Pacific. To identify alternative pharmacological strategies for these six symptoms if the oral route was no longer possible and injections are refused.
DESIGN AND SETTING: An online survey of all Asia Pacific Hospice Palliative Care Network (APHN) members was carried out to identify medications used for six symptoms (pain, dyspnea, excessive respiratory secretions, nausea/vomiting, restlessness, seizures) in dying children. Two scenarios were of interest: (1) hours to days before death and (2) when injectables were declined or refused.
RESULTS: There were 54 responses from 18 countries. Majority (63.0%) of respondents were hospital based. About half of all respondents were from specialist palliative care services and 55.6% were from high-income countries. All respondents had access to essential analgesics. Several perceived that there were no available drugs locally to treat the five other commonly encountered symptoms. There was a wide variation in preferred drugs for treating each symptom that went beyond differences in drug availability or formulations.
CONCLUSION: Future studies are needed to explore barriers to medication access and possible knowledge gaps among service providers in the region, so that advocacy and education endeavors by the APHN may be optimized.
Alban est un petit garçon de quatre ans à peine. Il a perdu son père, décédé d’un cancer il y a quelques mois. Alban ne pleure pas, il manifeste sa souffrance par une agitation, des provocations répétées vis-à-vis de sa mère. Il est très sensible à la séparation. La maman supporte difficilement le comportement de son fils, alors qu’elle doit faire face au deuil de son mari et à la douleur de la perte.
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BACKGROUND: Symptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients' symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives' distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition.
METHODS: The PeolcPSP data (n = 1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke's approach.
RESULTS: Five themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary.
CONCLUSIONS: This study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families.
Background: Sedatives are frequently used towards the end of life. However, there is scarce information when their use is labelled as ‘palliative sedation’.
Aim: To assess the use and labelling of ‘continuous administration of sedatives within the last 7 days of life’, based on objective operational criteria, on a palliative care unit.
Design: Retrospective cohort study, using medical records. Explorative statistical analysis (SPSS 23).
Setting/participants: Patients who died on a palliative care unit from August 2014 to July 2015. Sedatives recorded were benzodiazepines, levomepromazine, haloperidol >=5 mg/day and propofol.
Results: Of the 192 patients, 149 (78%) patients received continuous sedatives within the last week of life. The prevalence of delirium/agitation was significantly higher in patients with continuous sedatives compared to those without continuous sedatives at admission to the unit (35% vs 16%, p = 0.02) and on the day before death (58% vs 40%, p = 0.04). The term ‘(palliative) sedation’ was used in the records for 22 of 149 (15%) patients with continuous sedatives. These patients had significantly higher total daily midazolam doses 2 days before death (median (range), 15.0 (6.0–185.0) mg vs 11.5 (1.0–70.0) mg, p = 0.04) and on the day of death (median (range), 19.5 (7.5–240.0) mg vs 12.5 (2.0–65.0) mg, p = 0.01). The dose range was large in both groups.
Conclusion: The prevalence of delirium/agitation was associated with the administration of continuous sedatives. There was no consistent pattern regarding labelling the use of continuous sedatives as ‘(palliative) sedation’. Multicentre mixed-methods research is needed for a better characterization of sedation practices in palliative care.
End-stage restlessness, or terminal agitation, is experienced by some patients during their final days and is characterized by physical, emotional, or spiritual distress, agitation or anxiety. End-stage restlessness negatively affects the patient's death experience and can be distressing to the family and care team. Using the 2007 National Home and Hospice Care survey, this study examined factors associated with experiencing end-stage restlessness among non-Hispanic white and Hispanic hospice patients deceased at time of discharge. Results showed that being Hispanic/Latino, experiencing dyspnea, pain, and receiving palliative sedation treatment were risk factors for experiencing end-stage restlessness. The association between pain and restlessness was stronger for Hispanics compared with non-Hispanic whites. The Hispanic population remains underrepresented and little is known about the patient-centered experiences of Hispanic hospice users. Findings indicated that dying Hispanic patients continue to experience pain and other negative symptoms, even when hospice care is in place. Thus, it is important that social workers provide education to interdisciplinary team members about culturally competent practices, and advocate for a patient-centered approach to care.
Negative symptoms at the end of life are distressing for both the patient and family. Effective management of both physical and psychological symptoms improves quality of life and well-being, but intervention strategies are not always effective or feasible and often are exclusively pharmacologic. Developing treatment plans to meet symptom management needs is critical. A 2-site research study was conducted in southwest Ohio assessing effectiveness of Starlight Therapy in treating the negative symptoms associated with end of life. The study of 40 patients found the Starlight Therapy effective in treating the symptoms of anxiety, agitation, dyspnea, insomnia, and pain in 90% of the patients within a 30-minute period. The therapy was ineffective in only 4 patients. Physiological symptoms were measured upon initiating Starlight Therapy, 30 minutes after therapy, and 2 hours after therapy. Results found heart rate and respiratory rate significantly different from baseline to 30 minutes and from baseline to 2 hours (P < .05). Heart rate and respiratory rate were not significantly different from 30 minutes to 2 hours (P > .05). Further research is required to explore additional types of care, subjects, and sites, which could benefit from Starlight Therapy.
BACKGROUND: Palliative care is a rapidly evolving area of emergency medicine. With an estimated 5,000 to 10,000 baby boomers per day reaching retirement age, emergency departments (EDs) are treating more patients with chronic and serious disease. Palliative care offers comprehensive care for patients with advanced medical illness, aims to alleviate suffering and improve quality of life, and plays an important role in caring for these patients in the ED.
OBJECTIVES: We sought to increase the emergency physician's knowledge of and comfort with symptom control in palliative and hospice patients.
DISCUSSION: Having the skills to deliver efficient and appropriate palliative and hospice care is imperative for emergency physicians. Palliative care should be considered in any patient suffering from symptoms of a life-limiting illness, whereas hospice care should be considered in the patient with likely <6 months left to live. Palliative care is appropriate earlier in the course of disease, and is appropriate when the practitioner would not be surprised if the patient died in the next 2 years ("The Surprise Question"). This article discusses management in the ED of pain, nausea, dyspnea, agitation, and oral secretions in patients appropriate for hospice and palliative care.
CONCLUSION: The need for palliative and hospice care in the ED is increasing, requiring that emergency physicians be familiar with palliative and hospice care and competent in the delivery of rapid symptom management in patients with severe and life-limiting disease.
CONTEXT: Dying patients commonly experience potentially distressing symptoms. Palliative care guidelines recommend opioids, anticholinergics, antipsychotics and benzodiazepines for symptom relief.
OBJECTIVES: To systematically review the effectiveness and safety of palliative drug treatment in the last days of life of adult patients, focusing on the management of pain, dyspnea, anxiety, restlessness, and death rattle.
METHODS: A systematic search of the literature published before December 2016 in PubMed/MEDLINE, Embase, CINAHL, PsycINFO, Cochrane, ClinicalTrials.gov, and SveMed+. Studies on safety or effectiveness of drug therapy in dying adults with at least one outcome on symptom control, adverse effects, or survival were included. Data for included studies were extracted. Study quality was assessed using the Effective Public Health Practice Quality assessment tool for quantitative studies.
RESULTS: Of 5940 unique titles identified, 12 studies met the inclusion criteria. Five studies assessed anticholinergics for death rattle, providing no evidence that scopolamine hydrobromide and atropine were superior to placebo. Five studies examined drugs for dyspnea, anxiety, or terminal restlessness, providing some evidence supporting the use of morphine and midazolam. Two studies examined opioids for pain, providing some support for morphine, diamorphine and fentanyl. Eight studies included safety outcomes, revealing no important differences in adverse effects between the interventions, and no evidence for midazolam shortening survival.
CONCLUSION: There is a lack of evidence concerning the effectiveness and safety of palliative drug treatment in dying patients, and the reviewed evidence provides limited guidance for clinicians to assist in a distinct and significant phase of life.
Les soignants remarquent que l'agitation et les gestes pour rejeter draps et vêtements se rencontrent chez certains patients atteints d'un cancer en stade palliatif avancé. Une enquête observationnelle sur ce sujet a été menée dans l'objectif d'affiner l'approche clinique pronostique à court terme et d'organiser des soins mieux adaptés. [R.A.]
Origine : BDSP. Notice produite par APHPDOC 8sHnAR0x. Diffusion soumise à autorisation
Cette partie traite des réactions de l'enfant. Celles qu'il peut avoir à l'annonce du décès, ou encore celles qu'il peut manifester à plus long terme. Elle traite aussi de l'importance d'observer les changements qui interviennent chez l'enfant en deuil, qui sont les signes d'une souffrance parfois enfouie au fond de lui.
L'auteur cherche à montrer qu'il est possible de proposer, pour chaque symptôme, un traitement applicable en toute occasion. La prise en charge des symptômes, autres que la douleur, nécessite une démarche de diagnostic et une demande d'indication thérapeutique.