OBJECTIVE: Doctors and nurses are central in the challenging task of end-of-life (EOL) care, and this study aims to explore and describe doctors\' and nurses\' experiences of recognition and acknowledgment of the end of life for patients with cancer.
METHODS: A qualitative, explorative research design with individual interviews was carried out based on a semi-open interview guide. A total of 6 doctors and 6 nurses working in medical or surgical departments at a Norwegian University hospital were interviewed. The interviews were analyzed using qualitative content analysis.
RESULTS: The study\'s findings highlight that recognizing and acknowledging patients with cancer as being at end-of-life is a challenging process. Three subthemes emerged from the analysis; the significance of being experienced, the significance of organizational structures, and the significance of having a common understanding. A main theme was analyzed further and abstracted from the subthemes; Being safe to manage the balancing act of recognizing and acknowledging the end of life.
CONCLUSIONS: Much is at stake in the EOL setting, and healthcare professionals (HCP) must balance several aspects regarding EOL decisions. Striking the right balance in these situations is challenging. HCPs need a safety net through collaboration with, and support from, colleagues, supporting organizational structures and experience. Strengthening the safety net will have a clear impact on improving clinical practice to reduce futile treatment and provide high-quality EOL care for all dying patients in hospitals.

BACKGROUND: The role of non-kin caregivers, such as friends, neighbours, and acquaintances, in providing end-of-life care is significant but often overlooked in research and policy discussions. These caregivers provide extensive support for individuals in end-of-life care, in addition to or instead of family members. However, there is limited evidence in the literature regarding the experiences, burdens, and benefits of non-kin caregivers.
OBJECTIVE: The aim of this research is to examine the role and contributions of non-kin caregivers in end-of-life care. The study intends to uncover their experiences, associated challenges, benefits, and requirements for support.
METHODS: In order to achieve this objective, a mixed-methods approach will be employed, gathering data through structured questionnaires from approximately 150 non-kin caregivers and in-depth interviews with up to 25 participants. The questionnaires will measure the impact, burden, and benefits of caregiving. The Burden Scale for Family Caregivers, the Benefits of Being a Caregiver Scale, the Family Inventory of Needs, the Positive Mental Health Scale, a Graphic Closeness Scale, and selected items of the Eurofamcare Common Assessment Tool for socio-demographic and caregiving-related data will be used. Quantitative data will be analysed using IBM SPSS Statistics 28 for descriptive analysis and group comparison. The objective of the qualitative in-depth interviews is to obtain a comprehensive picture of the personal experiences, motivations and support needs of members of the non-kin caregivers cohort, who are as heterogeneous as possible in terms of gender, socio-economic status, and facility with the German language. The qualitative data from the interviews will be examined using MAXQDA software, adopting a grounded theory approach for analysis.
CONCLUSIONS: This research will develop a comprehensive framework that captures the nuanced experiences of non-kin caregivers at the end of life. The framework will identify areas where support for non-kin caregivers is lacking and where further research is needed.
BACKGROUND: The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00033889; date of registration: 05 April 2024). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.

UNASSIGNED: Delirium is a serious neuropsychiatric syndrome with adverse outcomes, which is common but often undiagnosed in terminally ill people. The 4 \'A\'s test or 4AT (www.the4AT.com), a brief delirium detection tool, is widely used in general settings, but validation studies in terminally ill people are lacking.
UNASSIGNED: To determine the diagnostic accuracy of the 4AT in detecting delirium in terminally ill people, who are hospice inpatients.
UNASSIGNED: A diagnostic test accuracy study in which participants underwent the 4AT and a reference standard based on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The reference standard was informed by Delirium Rating Scale Revised-98 and tests assessing arousal and attention. Assessments were conducted in random order by pairs of independent raters, blinded to the results of the other assessment.
UNASSIGNED: Two hospice inpatient units in Scotland, UK. Participants were 148 hospice inpatients aged ⩾18 years.
UNASSIGNED: A total of 137 participants completed both assessments. Three participants had an indeterminate reference standard diagnosis and were excluded, yielding a final sample of 134. Mean age was 70.3 (SD = 10.6) years. About 33% (44/134) had reference standard delirium. The 4AT had a sensitivity of 89% (95% CI 79%-98%) and a specificity of 94% (95% CI 90%-99%). The area under the receiver operating characteristic curve was 0.97 (95% CI 0.94-1).
UNASSIGNED: The results of this validation study support use of the 4AT as a delirium detection tool in hospice inpatients, and add to the literature evaluating methods of delirium detection in palliative care settings.
UNASSIGNED: ISCRTN 97417474.

Myoclonus is a relatively rare involuntary movement that is often observed in palliative care settings and that can cause patient distress. The purpose of this study is to investigate the occurrence of myoclonus and countermeasures against it in terminally ill patients with cancer diagnosed by palliative care specialists at Komaki City Hospital, Japan. We retrospectively reviewed patients with terminal cancer who received palliative care consultations between January 2018 and May 2019 and who were diagnosed with myoclonus by palliative care specialists, using electronic medical records. Patient demographics, time from onset of myoclonus to death, daily opioid use, countermeasures, and outcome of myoclonus were assessed. Of 360 patients examined during this period, 45 (12.5%) were diagnosed with myoclonus. Median age was 71 (range, 43-88) years; median time from onset of myoclonus to death was 8 days (range, 0-56); opioid usage was present in 39 patients (morphine, oxycodone, and fentanyl: n = 6, 21, and 12, respectively); and median oral morphine equivalent at onset of myoclonus was 60 mg (range, 12-336 mg). Myoclonus treatment was administered to 21 patients (opioid dose reduction, opioid switching, and others: n = 14, 3, and 4, respectively). Myoclonus is a common complication in patients with terminal cancer.

UNASSIGNED: Predicting length of time to death once the person is unresponsive and deemed to be dying remains uncertain. Knowing approximately how many hours or days dying loved ones have left is crucial for families and clinicians to guide decision-making and plan end-of-life care.
UNASSIGNED: To determine the length of time between becoming unresponsive and death, and whether age, gender, diagnosis or location-of-care predicted length of time to death.
UNASSIGNED: Retrospective cohort study. Time from allocation of an Australia-modified Karnofsky Performance Status (AKPS) 10 to death was analysed using descriptive narrative. Interval-censored survival analysis was used to determine the duration of patient\'s final phase of life, taking into account variation across age, gender, diagnosis and location of death.
UNASSIGNED: A total of 786 patients, 18 years of age or over, who received specialist palliative care: as hospice in-patients, in the community and in aged care homes, between January 1st and October 31st, 2022.
UNASSIGNED: The time to death after a change to AKPS 10 is 2 days (n = 382; mean = 2.1; median = 1). Having adjusted for age, cancer, gender, the standard deviation of AKPS for the 7-day period prior to death, the likelihood of death within 2 days is 47%, with 84% of patients dying within 4 days.
UNASSIGNED: This study provides valuable new knowledge to support clinicians\' confidence when responding to the \'how long\' question and can inform decision-making at end-of-life. Further research using the AKPS could provide greater certainty for answering \'how long\' questions across the illness trajectory.

BACKGROUND: This study extended the original Dignity Therapy (DT) intervention by including partners and family caregivers (FCs) of terminally-ill cancer patients with the overall aim of evaluating whether DT can mitigate distress in both patients nearing the end of life and their FCs.
METHODS: In this multicenter, randomized controlled trial (RCT), a total of 68 patients with life expectancy < 6 months and clinically-relevant stress levels (Hospital Anxiety Depression total score; HADStot ≥ 8) including their FCs were randomly assigned to DT, DT + (including their FCs), or standard palliative care (SPC) in a 1:1:1 ratio. Study participants were asked to complete a set of questionnaires pre- and post-intervention.
RESULTS: The coalesced group (DT and DT +) revealed a significant increase in patients\' perceived quality of life (FACIT-Pal-14) following the intervention (mean difference 6.15, SD = 1.86, p < 0.01). We found a statistically significant group-by-time interaction effect: while the HADStot of patients in the intervention group remained stable over the pre-post period, the control group\'s HADStot increased (F = 4.33, df = 1, 82.9; p < 0.05), indicating a protective effect of DT. Most patients and their FCs found DT useful and would recommend it to other individuals in their situation.
CONCLUSIONS: The DT intervention has been well-received and shows the potential to increase HRQoL and prevent further mental health deterioration, illness burden and suffering in terminally-ill patients. The DT intervention holds the potential to serve as a valuable tool for facilitating end-of-life conversations among terminally-ill patients and their FCs. However, the implementation of DT within the framework of a RCT in a palliative care setting poses significant challenges. We suggest a slightly modified and less resource-intensive version of DT that is to provide the DT inventory to FCs of terminally-ill patients, empowering them to ask the questions that matter most to them over their loved one\'s final days.
BACKGROUND: This study was registered with Clinical Trial Registry (ClinicalTrials.gov -Protocol Record NCT02646527; date of registration: 04/01/2016). The CONSORT 2010 guidelines were used for properly reporting how the randomized trial was conducted.

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BACKGROUND: Although emergency medical service is focused on providing acute prehospital treatment, it is often used by terminally ill patients and their informal caregivers during the last days of patient\'s life. Little is known about why they decide to use the emergency medical services.
OBJECTIVE: The aim was to explore informal caregivers\' motivation and decision-making process for calling emergency medical services for their terminally ill loved ones.
METHODS: This study used a qualitative design. Data were collected by semi-structured interviews with 31 relatives of 30 patients who used the emergency medical services. Data were analyzed with NVivo software by utilizing principles of thematic analysis.
RESULTS: Through the analysis, four distinct themes emerged: (1) limited availability of support from health care services; (2) insufficient planning of care; (3) decline in the health of the patient and (4) being lost and desperate.
CONCLUSIONS: For informal caregivers, emergency medical services represented an important source of support while caring for their terminally ill loved ones due to the limited availability of other sources of help, including a lack of specialist palliative care providers. Additionally, informal caregivers had limited knowledge of the dying process and used emergency medical services for professional advice.

BACKGROUND: Intranasal (i.n.) drug application is a widely known and low-invasive route of administration that may be able to achieve rapid symptom control in terminally ill patients. According to the German S3 guideline \"Palliative care for patients with incurable cancer\", benzodiazepines, such as midazolam, are recommended for the treatment of terminal agitation. To the best of our knowledge there is no evidence for i.n. midazolam in terminally ill patients. We aim to assess the use of i.n. midazolam as an alternative to subcutaneous administration of the drug.
METHODS: In this monocentric, randomised, controlled, open-label investigator initiated trial, n = 60 patients treated at the palliative care unit of a University Hospital will be treated with 5 mg midazolam i.n. versus 5 mg subcutaneous (s.c.) midazolam in the control arm when terminal agitation occurs (randomly assigned 1:1). The estimated recruitment period is 18 months. Treatment efficacy is defined as an improvement on the Richmond Agitation Sedation Scale (Palliative Version) (RASS-PAL) and a study specific numeric rating scale (NRS) before and after drug administration. Furthermore, plasma concentration determinations of midazolam will be conducted at t1 = 0 min, t2 = 5 min, and t3 = 20 min using liquid chromatography/mass spectrometry (LC-MS). The primary objective is to demonstrate non-inferiority of midazolam i.n. in comparison to midazolam s.c. for the treatment of agitation in terminally ill patients.
CONCLUSIONS: Midazolam i.n. is expected to achieve at least equivalent reduction of terminal agitation compared to s.c. administration. In addition, plasma concentrations of midazolam i.n. are not expected to be lower than those of midazolam s.c. and the dynamics of the plasma concentration with an earlier increase could be beneficial.
BACKGROUND: German Clinical Trials Registry DRKS00026775, registered 07.07.2022, Eudra CT No.: 2021-004789-36.

OBJECTIVE: Palliative home care services (PHCS) have been emerging for years. However, limited data exist regarding quality indicators for pain control, unplanned hospital readmissions, and household deaths among terminal cancer and non-cancer patients receiving PHCS.
METHODS: We conducted a retrospective collection and recording of data from 1242 terminally ill cancer and non-cancer patients receiving PHCS. The data were obtained from the Hospice-Palliative Clinical Database (HPCD) of Taichung Veterans General Hospital (TCVGH) for the period from 2016 to 2021. T test and chi-square test were applied for characteristics and the quality indicators among cancer and non-cancer groups. Chi-square test was used for trend analysis of the number of patients receiving PHCS and the quality indicators among cancer and non-cancer groups throughout the study period.
RESULTS: A total of 1242 terminally ill cancer and non-cancer patients who had received PHCS were documented by TCVGH from the years 2016 to 2021, including 221 non-cancer patients and 1021 cancer patients having an average age of 70. The number of terminally ill cancer and non-cancer patients receiving PHCS has increased annually since 2016. Another finding was that age was a statistically significant factor impacting quality indicators. On the other hand, compared to non-cancer patients, cancer patients had a higher likelihood of receiving treatment with analgesics when needed. Their odds of needing analgesics more than three times within 4 days after PHCS enrollment were significantly elevated [OR 4.188, 95% CI (1.002, 17.51)].
CONCLUSIONS: The results of this 6-year observational study indicate a substantial increase in the number of terminal cancer and non-cancer patients receiving PHCS over the past decade. Furthermore, aging plays an important role in life quality of terminal cancer and non-cancer patients.