Pharmacological Treatment for Terminal Agitation, Delirium and Anxiety in Frail Older Patients.

CONTEXT: Psychological distress symptoms in the last days of life often contribute to the overall symptom burden in frail older patients. Good symptom management practices are crucial to ensure high-quality end-of-life care in an aging population, though the best pharmacological approach to treat these psychological symptoms has yet to be established. OBJECTIVES: To identify current evidence-based and practice-based knowledge of pharmacological interventions for the treatment of agitation, delirium, and anxiety during the last days of life in frail older patients. METHODS: A systematic, mixed methods review was performed through MEDLINE via PubMed and EMBASE from inception until February 2022 and updated through March 2023. National and international guideline databases and grey literature were searched for additional studies and guidelines. RESULTS: Four quantitative studies, two non-randomized and two descriptive, were identified. No randomized controlled trials met inclusion criteria. No qualitative studies were withheld. The three consensus-based protocols that were found through citation searching and screening of grey literature did not meet the standards for inclusion. Haloperidol is recommended in consensus-based guidelines for delirium and is widely used, but high-quality evidence about its efficacy is missing. Better control of agitation or refractory delirium might be achieved with the addition of a benzodiazepine. There is no evidence available about the treatment of anxiety in the last days of life in frail older patients. CONCLUSIONS: This mixed methods review demonstrates the lack of good quality evidence that is needed to help clinicians with pharmacological treatment decisions when confronted with psychological symptoms in the last days of life in frail older patients. Population aging will only emphasize the need for further research in this specific population.

Death rattle: current experiences and non-pharmacological management-a narrative review.

BACKGROUND AND OBJECTIVE: Death rattle (DR) is a common symptom in dying patients, caused by secretions in the upper airway. Experiences regarding DR differ among patients, relatives, and health professionals. However, evidence of patients', relatives', and health professionals' needs for DR management in order to improve their experiences is lacking. In addition, little is known about the actual effects of non-pharmacological interventions on DR intensity or DR-related distress. This narrative review aims to explore (I) the experiences and needs of patients, relatives, and health professionals regarding DR sound and its management; and (II) studies on non-pharmacological interventions in DR management. METHODS: Based on a PubMed literature search with the free-text term "death rattle", nine studies published in the last ten years were included. KEY CONTENT AND FINDINGS: No significant correlation between DR intensity and patients' respiratory distress could be found. Some relatives experience high levels of distress and express a need for DR care improvement. Health professionals are often influenced in their decision-making to intervene by external pressure or their need 'to do something'. Both repositioning and explaining DR to relatives are seen as useful first-line non-pharmacological interventions by health professionals. The severity of DR does not improve when suctioning is performed before starting anticholinergics. CONCLUSIONS: Variation in DR-related experiences and needs exists among relatives and health professionals. More research is needed into the effectiveness of non-pharmacological interventions for DR management and the most suitable measurement tools to objectify DR-related outcomes.

Acoustic stimulation as a promising technique to enhance slow-wave sleep in Alzheimer's disease: results of a pilot study.

STUDY OBJECTIVES: Sleep disturbances are common in people with Alzheimer's disease (AD), and a reduction in slow-wave activity is the most striking underlying change. Acoustic stimulation has emerged as a promising approach to enhance slow-wave activity in healthy adults and people with amnestic mild cognitive impairment. In this phase 1 study we investigated, for the first time, the feasibility of acoustic stimulation in AD and piloted the effect on slow-wave sleep (SWS). METHODS: Eleven adults with mild to moderate AD first wore the DREEM 2 headband for 2 nights to establish a baseline registration. Using machine learning, the DREEM 2 headband automatically scores sleep stages in real time. Subsequently, the participants wore the headband for 14 consecutive "stimulation nights" at home. During these nights, the device applied phase-locked acoustic stimulation of 40-dB pink noise delivered over 2 bone-conductance transducers targeted to the up-phase of the delta wave or SHAM, if it detected SWS in sufficiently high-quality data. RESULTS: Results of the DREEM 2 headband algorithm show a significant average increase in SWS (minutes) [t(3.17) = 33.57, P = .019] between the beginning and end of the intervention, almost twice as much time was spent in SWS. Consensus scoring of electroencephalography data confirmed this trend of more time spent in SWS [t(2.4) = 26.07, P = .053]. CONCLUSIONS: Our phase 1 study provided the first evidence that targeted acoustic stimuli is feasible and could increase SWS in AD significantly. Future studies should further test and optimize the effect of stimulation on SWS in AD in a large randomized controlled trial. CITATION: Van den Bulcke L, Peeters A-M, Heremans E, et al. Acoustic stimulation as a promising technique to enhance slow-wave sleep in Alzheimer's disease: results of a pilot study. J Clin Sleep Med. 2023;19(12):2107-2112.

Barriers and facilitators for physical activity on acute geriatric and rehabilitation wards: a survey study.

OBJECTIVES: During hospitalisation, physical inactivity is common among older patients and is associated with adverse outcomes, e.g. functional decline. This study identified barriers and facilitators of physical activity with geriatric patients during hospital admission. METHODS: This is a cross-sectional descriptive study, on two acute geriatric units and one rehabilitation unit, using a researcher-administered survey methodology in patients 70 years or older. A new questionnaire was developed based on a literature review, and was administered bedside and face-to-face with the older patients. RESULTS: 72 patients, mean age 83.6 years, completed the questionnaire. 88.9% of the participants found physical activity important during hospitalisation. The main patient-related determinants were fear of falling and symptoms of current illness (e.g. pain). The main environmental-related determinants were the presence of medical devices, and the availability of walking aids. Half of the patients felt motivated by the hospital staff, and one out of six participants felt discouraged. Receiving more assistance for walking and having access to other types of physical activity was expected to increase physical activity. Additionally, motivation from family would be a facilitator for 44.4% of the participants. CONCLUSION: Promoting physical activity on acute geriatric units will require interventions at different levels. Most importantly, focusing on interpersonal motivators and positive reinforcement by hospital staff could be beneficial strategies to increase the physical activity of older hospitalised patients.

Patient-reported outcomes versus proxy-reported outcomes in supportive and palliative care: a summary of recent literature.

PURPOSE OF THE REVIEW: Patient-reported outcomes are one of the most valuable clinical outcome measures. In palliative care, however, they are often difficult to retrieve. Therefore, proxy-reported outcomes are sometimes used as a surrogate. As there have been concerns about the validity of these by-proxy reports, the authors reviewed the most recent literature for the most recent insights in using proxy-reported outcomes. RECENT FINDINGS: The authors found very little new research on patient versus proxy-reported outcomes in palliative care. The results of the studies the authors found seem to correlate with older evidence concluding that there are many factors influencing a discrepancy between patients' outcomes and how this is perceived by their proxies, such as the well-being paradox, caregiver burden, and the proxies' own mental well-being. SUMMARY: While proxies' opinions and knowledge of the patients' values are important factors to consider, proxy-reported outcomes should be used with caution and viewed as a complementary perspective rather than a true substitute for the individual patient's outcome.

Burnout of healthcare professionals in supportive and palliative care: a summary of recent literature.

PURPOSE OF REVIEW: Burnout is a complex phenomenon where several personal and work-related factors interact with each other. Palliative care is a challenging branch of healthcare, which can be especially demanding for the professionals providing it. This review presents an overview of the most recent literature on causes, identification, and consequences of burnout as well as articles on interventions to reduce burnout in the professional palliative healthcare provider setting. RECENT FINDINGS: With a few exceptions, research on burnout in the palliative care provider setting is focused on further insight on the different aspects that cause burnout on an individual, social, and organizational level. Unfortunately, only a few studies were found on interventions to prevent burnout. While the results of these interventions were promising, long-term results or data on how these diminish actual healthcare provider dropout were not available. SUMMARY: Research on burnout faced by palliative healthcare professionals seems to focus mainly on gaining further insight of different aspects of the complex syndrome that is burnout and how different individual, social, and organizational factors interact with each other. Further research on the prevention and treatment of burnout is necessary.

Development and Validation of the Symptom Assessment to Improve Symptom Control for Institutionalized Elderly Scale.

OBJECTIVES: To validate a newly developed multiple symptom self-assessment tool in nursing homes. DESIGN: Thirty prevalent symptoms identified in the literature were classified by a 2-round Delphi procedure to a top 10 of the most relevant, burdensome symptoms. Because no existing symptom scale fully covered this top 10, we developed a new scale, consisting of a horizontal numerical scale for the top 10 symptoms, with the possibility to add and rate 3 other symptoms. This scale was validated. SETTING AND PARTICIPANTS: Hundred seventy-four participants, mean age 85 (±5.94) years, were recruited from 7 nursing homes (86%) and 3 acute geriatric wards (14%). METHODS: To test the construct validity, participants with and without a palliative status were enrolled. Participants completed the Symptom Assessment to Improve Symptom Control for Institutionalized Elderly (SATISFIE) scale on day 0 and day 1 (intrarater reliability). Nurses completed the scale on day 0 (inter-rater reliability). Descriptive statistics described the characteristics of the study population and symptom scores. Differences in symptom scores between palliative and nonpalliative participants were analyzed with the Mann-Whitney U test. Intrarater and inter-rater reliability were calculated by means of an intraclass correlation coefficient. Factor analysis searched for possible symptom clusters. Feasibility was evaluated by measuring the assessment time and by providing a questionnaire for the nurses. RESULTS: In the nonpalliative group (n = 130), the highest self-rated median scores were pain on day 1 [median 3, interquartile range (IQR) 0-5] and pain on day 2. In the palliative group (n = 44), the highest median self-rated scores were fatigue on day 1 [median 5 (IQR 0-6)], lack of energy on day 1 and 2 [both median 5 (IQR 0-8)]; and depressed feeling on day 2 [median 3 (IQR 0-5)]. Nurse assessments median scores were the highest for depressed feeling [median 5 (IQR 1-7)], fatigue [median 4.5 (IQR 0-6.5)], and lack of energy, [median 3 (IQR 0-6)] in the palliative group. In the nonpalliative group, none of the median scores was 3 or more. Intraclass correlation coefficients for intrarater reliability varied between 0.65 and 0.89 and for inter-rater reliability (patients-nurses) between 0.18 and 0.63. Mean assessment time for nurses was 2.0 minutes [standard deviation (SD) = 1.01]. For participants, it decreased from 10.5 minutes (SD = 5.41) at the first assessment to 7.5 minutes (SD = 3.72) at the second assessment. Nurses determined the SATISFIE instrument to be useful, applicable in daily practice, and sufficiently comprehensible for the patients. CONCLUSIONS: The SATISFIE scale is a valid and feasible instrument for regular, multiple symptom assessment in institutionalized older persons.

Physical and Psychological Distress Are Related to Dying Peacefully in Residents With Dementia in Long-Term Care Facilities.

CONTEXT: Although dying peacefully is considered an important outcome of high-quality palliative care, large-scale quantitative research on dying peacefully and the factors associated with a peaceful death is lacking. OBJECTIVES: To gain insight into how many residents with dementia in long-term care facilities die peacefully, according to their relatives, and whether that assessment is correlated with observed physical and psychological distress. METHODS: This was a retrospective cross-sectional study of deceased nursing home residents in a representative sample of long-term care facilities in Flanders, Belgium (2010). Structured post-mortem questionnaires were completed by relatives of the resident, who were asked to what extent they agreed that the resident "appeared to be at peace" during the dying process. Spearman correlation coefficients gave the correlations between physical and psychological distress (as measured using the Symptom Management at the End of Life with Dementia and Comfort Assessment in Dying at the End of Life with Dementia scales) and dying peacefully (as measured using the Quality of Dying in Long Term Care instrument). RESULTS: The sample comprised 92 relatives of deceased residents with dementia. In 54% of cases, relatives indicated that the resident died peacefully. Weak-to-moderate correlations (0.2-0.57) were found between dying peacefully and physical distress in the last week of life. Regarding psychological distress, weak-to-moderate correlations were found for both the last week (0.33-0.44) and last month of life (0.28-0.47). CONCLUSION: Only half of the residents with dementia died peacefully as perceived by their relatives. Relatives' assessment of whether death was peaceful is related to both physical and psychological distress. Further qualitative research is recommended to gain more in-depth insights into the aspects on which relatives base their judgment of dying peacefully.

Actual and preferred place of death of home-dwelling patients in four European countries: making sense of quality indicators.

BACKGROUND: Dying at home and dying at the preferred place of death are advocated to be desirable outcomes of palliative care. More insight is needed in their usefulness as quality indicators. Our objective is to describe whether "the percentage of patients dying at home" and "the percentage of patients who died in their place of preference" are feasible and informative quality indicators. METHODS AND FINDINGS: A mortality follow-back study was conducted, based on data recorded by representative GP networks regarding home-dwelling patients who died non-suddenly in Belgium (n = 1036), The Netherlands (n = 512), Italy (n = 1639) or Spain (n = 565). "The percentage of patients dying at home" ranged between 35.3% (Belgium) and 50.6% (The Netherlands) in the four countries, while "the percentage of patients dying at their preferred place of death" ranged between 67.8% (Italy) and 86.0% (Spain). Both indicators were strongly associated with palliative care provision by the GP (odds ratios of 1.55-13.23 and 2.30-6.63, respectively). The quality indicator concerning the preferred place of death offers a broader view than the indicator concerning home deaths, as it takes into account all preferences met in all locations. However, GPs did not know the preferences for place of death in 39.6% (The Netherlands) to 70.3% (Italy), whereas the actual place of death was known in almost all cases. CONCLUSION: GPs know their patients' actual place of death, making the percentage of home deaths a feasible indicator for collection by GPs. However, patients' preferred place of death was often unknown to the GP. We therefore recommend using information from relatives as long as information from GPs on the preferred place of death is lacking. Timely communication about the place where patients want to be cared for at the end of life remains a challenge for GPs.

When do people with dementia die peacefully? An analysis of data collected prospectively in long-term care settings.

BACKGROUND: Little is known about dying peacefully with dementia in long-term care facilities. Dying peacefully may be influenced by characteristics of the palliative care provided and characteristics of the long-term care setting. If so, dying peacefully may serve as a quality indicator for palliative care in dementia. AIM: This study aims to describe whether residents with dementia in Dutch long-term care facilities die peacefully and to assess which characteristics of the resident, the palliative care provided and the facilities are associated with dying peacefully. DESIGN AND SETTING: We analysed existing data from the Dutch End of Life in Dementia study, collected between January 2007 and July 2010 in 34 long-term care facilities in the Netherlands. We used descriptive statistics and Generalised Estimating Equation models. RESULTS: The sample consisted of 233 residents with dementia. Family members indicated that the resident died peacefully in 56% of cases. This percentage ranged from 17% to 80% across facilities. Residents were more likely to die peacefully if they had an optimistic attitude, if family found that there were enough nurses available and if residents died in facilities with a moderate (versus no) perceived influence of religious affiliation on end-of-life decision-making policies. CONCLUSIONS: Only half of the residents with dementia in Dutch long-term care facilities die peacefully, as perceived by relatives. In addition to residents' optimistic attitude, facility characteristics are associated with dying peacefully, which suggests that 'the percentage of relatives who indicate that the patient died peacefully' can function as a quality indicator.

Hospitalizations of cancer patients in the last month of life: quality indicator scores reveal large variation between four European countries in a mortality follow-back study.

BACKGROUND: Repeated and long hospitalizations of cancer patients at the end of life have been suggested as indicators of low quality of palliative care. Comparing the care delivered between different countries with the help of these quality indicators may identify opportunities to improve practice. Our objective is twofold: firstly, to describe the scores for the existing quality indicators "the percentage of time spent in hospital" and "the proportion of adult patients with more than one hospitalization in the last 30 days of life" in populations of cancer patients in four European countries and to see whether these countries met previously defined performance standards; secondly, to assess whether these scores are related to receiving palliative care from their GP. METHODS: A mortality follow-back study was conducted, based on data recorded by representative GP networks for samples of cancer patients living at home who died non-suddenly in Belgium (n = 500), the Netherlands (n = 310), Italy (n = 764), and Spain (n = 224). RESULTS: The quality indicator score for "the percentage of time spent in hospital" in the last month of life was 14.1% in the Netherlands, 17.7% in Spain, 22.2% in Italy, and 24.6% in Belgium, which means that none of the countries met the performance standard of <10%. For the "proportion of patients with more than one hospitalization in the last 30 days of life", two countries met the performance standard of <4%: the Netherlands (0.6%) and Italy (3.1%). Spain had a score of 4.0% and Belgium scored 5.4%. When patients received palliative care from their GP, significantly less time was spent in hospital in the last month and fewer hospitalizations took place. CONCLUSIONS: European countries differ regarding the frequency and duration of hospitalizations of cancer patients in the last month of life. This reflects country-specific differences in the organization of palliative care and highlights the important role of the GP in palliative care provision.

Quality indicators for palliative care: update of a systematic review.

CONTEXT: In 2007, a systematic review revealed a number of quality indicators referring mostly to palliative care outcomes and processes. Psychosocial and spiritual aspects were scarcely represented. Most publications lacked a detailed description of the development process. With many initiatives and further developments expected, an update is needed. OBJECTIVES: This update gives an overview of the published quality indicators for palliative care and identifies any new developments since 2007 regarding the number and type of indicators developed and the methodology applied. METHODS: The same literature search as in the 2007 review was used to identify relevant publications up to October 2011. Publications describing development processes or characteristics of quality indicators for palliative care were selected by two reviewers independently. RESULTS: The literature search resulted in 435 hits in addition to the 650 hits found in the previous review. Thirteen new publications were selected in addition to the 16 publications selected earlier, describing 17 sets of quality indicators containing 326 indicators. These cover all domains of palliative care as defined by the U.S. National Consensus Project. Most indicators refer to care processes or outcomes. The extent to which methodological characteristics are described varies widely. CONCLUSION: Recent developments in measuring quality of palliative care using quality indicators are mainly quantitative in nature, with a substantial number of new indicators being found. However, the quality of the development process varies considerably between sets. More consistent and detailed methodological descriptions are needed for the further development of these indicators and improved quality measurement of palliative care.