Journal of Palliative Care最新文献

Objective(s): Studies show the effects of dependent patients' caregivers on the caregiving burden. Knowing the effects of maintenance of movement, especially in life activities, on the factors affecting the caregiving burden is important for the quality of care, ensuring that the caregiver's capacity is preserved. Methods: This descriptive and cross-sectional study research was carried out to determine the effect of life activity levels of palliative care patients on the care burden of caregivers. The number of individuals to be sampled was calculated according to the sample formula with a known population. The sample of the consisted of 108 patients and their caregivers in a district state hospital between June and December 2022. Data were collected using the Barthel Index of Patient Activities of Daily Living (ADL) and Caregiver Burden Scale. Descriptive statistical methods, quantitative data analyses, and correlation analyses were used in the analysis of the data. Results: The average age for patient was 78.13 ± 10.25 and for caregivers was 54.64 ± 13.22 years. Barthel ADL Index score of the patients was 35.05, and 38% of the patients were completely dependent. Caregiver Burden Scale scores was 50.80, and 76.8% of the caregivers had moderate caregiver burden. Patients with increasing age, with diabetes mellitus and dementia diagnosis, not using glasses, or having urinary catheters and gastrostomy tubes had lower activity levels. The caregiver burden of caregivers was higher in those who spent 3 to 4 h for daily patient care, who had sleep problems, who thought that their health deteriorated compared to those who did not. It was determined that as the patients' ability to perform their daily activities decreased, the caregiver burden increased (r = -0.417; P < .01). Conclusions: It might be recommended that nurses can implement the nursing interventions completely and severely dependent patients' caregivers psychological and social support.

Background: Palliative care aims to improve or maintain quality of life for patients with life-limiting or life-threatening diseases. Limited research shows that palliative care is associated with reduced intensive care unit length of stay and use of high-cost resources.

Methods: This was an observational, non-experimental comparison group study on all patients 18 years or older admitted to any intensive care unit (ICU) at Memorial Hermann - Texas Medical Center for 7 to 30 days from August 2013 to December 2015. Length of stay (LOS) and hospital costs were compared between the treatment group of patients with palliative care in the ICU and the control group of patients with usual care in the ICU. To adjust for confounding of the palliative care consultation on LOS and hospital cost, an inverse probability of treatment weighted method was conducted. Generalized linear models using gamma distribution and log link were estimated. All costs were converted to 2015 US dollars.

Results: Mean LOS was 13 days and mean total hospital costs were USD 58,378. In adjusted and weighted analysis, LOS for the treatment group was 8% longer compared to the control group. The mean total hospital cost was estimated to decrease by 21% for the treatment group versus the control group. We found a reduction of USD 33,783 in hospital costs per patient who died in the hospital and reduction of USD 9113 per patient discharged alive.

Conclusion: Palliative care consultation was associated with a reduction in the total cost of hospital care for patients with life-limiting or life-threatening diseases.

Objective: This study aimed to survey the practice of palliative sedation in Portugal, where data on this subject were lacking. Methods: This was a prospective multicentric study that included all patients admitted to each team that agreed to participate. Patients were followed until death, discharge, or after 3 months of follow-up. Results: The study included 8 teams: 4 as palliative care units (PCU), 1 as a hospital palliative care team (HPCT), 2 as home care (HC), and 1 as HPCT and HC. Of the 361 patients enrolled, 52% were male, the median age was 76 years, and 285 (79%) had cancer. Continuous sedation was undergone by 49 (14%) patients: 26 (53%) were male, and the median age was 76. Most patients, 46 (94%), had an oncological diagnosis. Only in a minority of cases, the family, 16 (33%), or the patient, 5 (10%), participated in the decision to sedate. Delirium was the most frequent symptom leading to sedation. The medication most used was midazolam (65%). In the multivariable analysis, only age and the combined score were independently associated with sedation; patients <76 years and those with higher levels of suffering had a higher probability of being sedated. Conclusions: The practice of continuous palliative sedation in Portugal is within the range reported in other studies. One particularly relevant point was the low participation of patients and their families in the decision-making process. Each team must have a deep discussion on this aspect.

Objective: The principal aim of this study was to identify, systematically and transparently, clinical practice guidelines (CPGs) on palliative sedation from around the world. Methods: A systematic search was performed using 5 databases, grey literature search tools, citation tracking, and contact with palliative care experts across the world. Current CPGs accredited by an international, national, or regional authority, published in English, German, French, or Italian, were subjected to content analysis. Results: In total, 35 CPGs from 14 countries and 1 international CPG were included in the analysis. The CPGs had diverse formal characteristics. Their thematic scope was difficult to analyze and compare because of differences in the terms and definitions of palliative sedation in those texts. We identified 3 main situations: (1) CPGs with a fully explicit thematic scope; (2) CPGs with a partially explicit thematic scope; and (3) CPGs without an explicit thematic scope. Several CPGs explicitly stated what forms of sedation were excluded from the text. However, this presentation was often confusing. Conclusion: Our review provides several pieces of information that could guide international reflections in this field, and be used to develop or update CPGs at all levels. Efforts should be made to clarify the thematic scope of each CPG on palliative sedation, in order to generate an understanding of the forms of this therapy addressed in the text.

Background: Advancement in treatment has led to prolonged survival and a rising number of women living with metastatic breast cancer (MBC) in the United States. Due to its high symptom burden, it is recommended that palliative care be integrated into the standard care to help improve quality of life. However, little is known about the use of palliative care among MBC patients in the nation.

Objectives: To determine utilization of palliative care consult (PCC) after metastasis and the influence of PCC on healthcare utilization in the end of life among women living with MBC in the US.

Methods: This retrospective cohort study examined a national electronic health record database to quantify the PCC use after metastasis diagnosis until death and the associations of PCC with Emergency Department (ED), Intensive Care Unit (ICU), and chemotherapies in the end-of-life women (age ≥ 18 years) living with MBC.

Results: From a cohort of 2615 deceased MBC patients, 37% received PCC in the last 6 months of life. Patients who had received PCC in the end-of-life were more likely to be hospitalized, admitted to ED and ICU, and receive chemotherapies in the last 60 days before death. However, patients who had received end-of-life PCC had less hospital and ED visits and received less chemotherapies after PCC initiated.

Conclusion: While PCC can reduce end-of-life aggressive interventions, it was underutilized among patients with MBC in the end-of-life. A myriad of clinical and patient factors may still challenge timely consultation. We urge for future endeavors in developing strategies to remove barriers in the implementation, especially earlier in the disease course, to assure timely PC treatments and reduce discomfort amid aggressive interventions for MBC.

Objective(s): Unmet needs of relatives of patients with advanced cancer not only reduce their own health-related quality of life, but may also negatively affect patients' health outcomes. The aim of this study was to assess changes in relatives' unmet needs of patients with advanced cancer in the last year of life and to identify differences in unmet needs by gender and type of relationship. Methods: Relatives of patients with advanced cancer in the Netherlands were included in a prospective, longitudinal, observational study. Relatives' unmet needs were measured every 3 months with an adapted version of the Problems and Needs in Palliative Care (PNPC) questionnaire Caregiver form (44 items, 12 domains). Questionnaires completed in the patients' last year of life were analyzed. Change of unmet needs in the last year, and differences in unmet needs by gender and type of relationship were analyzed. Results: A total of 409 relatives were included with a median of 4 unmet needs in the patient's last year. Unmet needs were most prevalent at all time points during the last year in the domains "caring for the patient" (highest need = 35%) and "psychological issues" (highest need = 40%). The number of unmet needs of relatives did not change significantly during the last year of life (P=.807). There were no significant differences in the number of unmet needs between male and female partners and between partners and other relatives. Conclusion: The most unmet needs for relatives were in the domains "caring for the patient" and "psychological issues." Professional support should focus on these items. Within these domains, it seems especially important that relatives get more knowledge and support about what scenarios to expect and how to deal with them.

Objectives: (1) To describe ACPT implementation frequency in practice. (2) To assess associations of ACPT documentation with a) hospital care consumption, including systemic anti-tumor treatment in the last month(s) of life, and b) match between preferred and actual place of death, among oncology patients. Methods: A retrospective cohort study was performed. Data concerning ACPT documentation, hospital care consumption, and preferred and actual place of death were extracted from electronic patient records. Patients with completely documented ACPT (cACPT) and no ACPT were compared using multivariable logistic regression analyses. Results: ACPT was implemented in 64.5% (n = 793) of all deceased patients (n = 1230). In 17.6% (n = 216), preferred place of care or death was documented at least three months before death (cACPT). A cACPT was not associated with systemic anti-tumor treatment (Adjusted OR (AOR): 0.976; 95% CI: 0.642-1.483), but patients with cACPT had fewer diagnostic tests (AOR: 0.518; CI: 0.298-0.903) and less contacts with hospital disciplines (AOR: 0.545; CI: 0.338-0.877). In patients with cACPT, a match between preferred and actual place of death was found for 83% of the patients for whom the relevant information was available (n = 117/n = 141). In patients without ACPT, this information was mostly missing. Conclusion: Although the ACPT was implemented in two thirds of patients, timely documentation of preferred place of care or death is often missing. Yet, timely documentation of these preferences may promote out-hospital-death and save hospital care consumption.

Objectives: Research considered patient outcomes primarily over caregivers in end-of-life care settings. The importance of family caregivers (FCs) in end-of-life care draws growing awareness, evidenced by an increasing number of evaluations of caregiver-targeted interventions. Little is known of FCs' collateral benefits in patient-oriented home-based end-of-life care. The study aims to investigate FC outcomes and change mechanisms in patient-oriented care. Methods: A pre-post-test study. We recruited FCs whose patients with a life expectancy ≤ 6 months enrolled in home-based end-of-life care provided by service organizations in Hong Kong. Patients' symptoms, dimensions of caregiving strain (ie, perception of caregiving, empathetic strain, adjustment demands), and aspects of FCs' wellbeing (ie, perceived health, positive mood, life satisfaction, spiritual well-being) were measured at baseline (T₀) and 3 months later (T₁). Results: Of the 345 FCs at T₀, 113 provided T₁ measures. Three months after the service commenced, FCs' caregiving strain significantly reduced, and their positive mood improved. Alleviation of the patient's physical symptoms predicted FC better outcomes, including the perception of caregiving, empathetic strain, and wellbeing. Changes in perception of caregiving mediated the effects of changes in patients' physical symptoms on FCs' changes in life satisfaction and spiritual wellbeing. Changes in empathetic strain mediated the changes between patient's physical symptoms and FCs' positive mood. Conclusions: Collateral benefits of patient-oriented home-based end-of-life care were encouraging for FCs. Patient's physical symptom management matters to FCs' caregiving strain and wellbeing. The active ingredients modifying FCs' perception of caregiving and addressing empathetic strain may amplify their benefits in wellbeing.

Objective: Motor neuron disease is a rapidly progressing neurological condition. People with life-limiting conditions generally prefer to die at home and avoid hospital admissions, with Specialist Palliative Care Team involvement often pivotal. Our aim was to investigate the role of advance care planning, Specialist Palliative Care Team input and other relevant variables on place of death and unscheduled hospital admissions in a Scottish population of people with motor neuron disease. Methods: National CARE-MND audit data, primary and secondary care data, and local Palliative Care records were interrogated. Chi-square, point-biserial correlation and binary logistic regression analysed associations (p < 0.05 statistically significant). Participants (188) were deceased, having a verified motor neuron disease diagnosis between 2015-2017, diagnosis occurring ≥28 days before death. Results: Advance care planning and Specialist Palliative Care Team input of ≥28 days were associated with increased odds of dying outside hospital (BLR:OR 3.937, CI 1.558-9.948, p = 0.004 and OR 2.657, CI 1.135-6.222, p = 0.024 respectively). Non-invasive ventilation decreased the odds of dying outside hospital (BLR:OR 0.311, CI 0.124-0.781, p = 0.013). Having a gastrostomy increased odds of ≥1 admissions in the last year of life (BLR:OR 5.142, CI 1.715-15.417, p = 0.003). Statistical significance was retained with removal of gastrostomy-related complications. Conclusion: Early Specialist Palliative Care input and advance care planning may increase the likelihood of death outside of hospital for persons with motor neuron disease. Further research is warranted into barriers of facilitating death outside of hospital with home non-invasive ventilation use and the association between gastrostomy status and unscheduled admissions.

Objectives: To explore anxiety experienced by caregivers providing home-based, end-of-life care to patients with cancer. We examined the relationship between caregiver anxiety and receipt of palliative care by the patient. Methods: A case series of terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 12 months or until patient death. Data collected included qualitative, quantitative, and observational data; this analysis utilizes the quantitative data. Longitudinal Latent Growth Models were used to characterize the heterogeneity of primary caregiver anxiety over time. The influence of palliative care on caregiver anxiety over time was assessed. Characteristics associated with membership in the trajectory groups rendered from those models are presented. Results: The majority of caregivers were female (73.9%), white (54.9%), and patient spouses (45.3%). Three classes of caregivers were identified based on their anxiety scores over time (low, elevated, and high). The 2 groups who had elevated and high anxiety had significant increases in anxiety over time. Controlling for patient receipt of palliative care attenuated those increases. Caregivers with the lowest level of anxiety were more likely to be Black, report fewer symptoms of depression or caregiver burden and higher self-rated physical health. Caregivers who were younger reported higher anxiety. Conclusions: Our analysis detected 3 distinct cancer caregiver groups reporting low, elevated, and very high levels of anxiety. Caregivers with elevated or high anxiety also demonstrated increasing anxiety overtime; however increases were attenuated with patient receipt of palliative care. For cancer caregivers with elevated and high levels of anxiety, palliative care buffers further deterioration of their mental health.