Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 9.282
Filtrar
1.
JMIR Res Protoc ; 13: e55129, 2024 Sep 04.
Artículo en Inglés | MEDLINE | ID: mdl-39230940

RESUMEN

BACKGROUND: Sedation at the end of life is used to relieve distressing symptoms including agitation and delirium. Standard care may include infused benzodiazepines or antipsychotics. These agents often result in deep sedation with loss of interaction with loved ones, which may be distressing. OBJECTIVE: The DREAMS (Dexmedetomidine for the Reduction of End-of-life Agitation and for optiMised Sedation) trial aimed to compare the sedative and antidelirium effects of the alpha-2 agonist dexmedetomidine, a novel palliative care sedative, compared with midazolam, a benzodiazepine when administered by subcutaneous infusion at the end of life, with doses of both agents targeting lighter, or potentially interactive sedation. METHODS: Participants were recruited from adult inpatients admitted for end-of-life care under a palliative care team in regional New South Wales, Australia. Inclusion criteria included patients older than 18 years, with a preference for lighter sedation at the end of life. Exclusion criteria included severe cardiac dysfunction (contraindication to dexmedetomidine). Participants consented and were placed on a treatment-pending list. Upon experiencing terminal deterioration, patients were randomized to either arm 1 (dexmedetomidine) or arm 2 (midazolam) as their treatment arm. These treatments were administered by continuous subcutaneous infusion. The level of consciousness and agitation of the patients were measured by the Richmond Agitation-Sedation Scale-Palliative version and the Memorial Delirium Assessment Score. Richmond Agitation-Sedation Scale-Palliative version assessments were performed by both nursing and medical staff, while Memorial Delirium Assessment Score assessments were carried out by medical staff only. Families and patients were asked to complete, as able, a patient comfort assessment form, to gauge perceptions of distress. Data were collected and matched with the breakthrough medication doses administered, along with qualitative comments in the medical record. In addition, the study tracked symptoms and patient functional status that were recorded as part of the Palliative Care Outcomes Collaborative, a national tracking project for monitoring symptom outcomes in palliative care. RESULTS: The DREAMS trial was funded in May 2020, approved by the ethics committee in November 2020, and started recruiting participants in May 2021. Data collection commenced in May 2021 and is anticipated to continue until December 2024. Publication of results is anticipated from 2024 to 2026. CONCLUSIONS: The evidence base for sedative dosing in palliative care for distress and agitation is not robust, with standard care based primarily on clinical experience and not robust scientific evidence. This study is important because it will compare a standard and a novel sedative used in end-of-life treatment. By assessing the potential efficacy and benefits of both, it seeks to optimize the quality of dying by providing targeted sedation that can improve the communication between dying patients and their loved ones. TRIAL REGISTRATION: Australia New Zealand Clinical Trials Register ACTRN12621000052831; https://uat.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=380889. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/55129.


Asunto(s)
Dexmedetomidina , Hipnóticos y Sedantes , Midazolam , Agitación Psicomotora , Cuidado Terminal , Dexmedetomidina/administración & dosificación , Dexmedetomidina/uso terapéutico , Humanos , Hipnóticos y Sedantes/uso terapéutico , Hipnóticos y Sedantes/administración & dosificación , Midazolam/uso terapéutico , Midazolam/administración & dosificación , Agitación Psicomotora/tratamiento farmacológico , Cuidado Terminal/métodos , Masculino , Femenino , Cuidados Paliativos/métodos , Adulto , Persona de Mediana Edad , Anciano , Nueva Gales del Sur
2.
Indian J Crit Care Med ; 28(Suppl 2): S1-S3, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-39234224

RESUMEN

How to cite this article: Myatra SN, Peter JV, Juneja D, Kulkarni AP. Think Globally, Adapt Locally: The ISCCM Guidelines and Position Statements. Indian J Crit Care Med 2024;28(S2):S1-S3.

3.
Artículo en Inglés | MEDLINE | ID: mdl-39237028

RESUMEN

CONTEXT: Prognostication challenges contribute to delays in advance care planning (ACP) for patients with cancer near the end of life (EOL). OBJECTIVES: Examine a quality improvement mortality prediction algorithm intervention's impact on ACP documentation and EOL care. METHODS: We implemented a validated mortality risk prediction machine learning model for solid malignancy patients admitted from the emergency department (ED) to a dedicated solid malignancy unit at Duke University Hospital. Clinicians received an email when a patient was identified as high-risk. We compared ACP documentation and EOL care outcomes before and after the notification intervention. We excluded patients with intensive care unit (ICU) admission in the first 24 hours. Comparisons involve chi-square/Fisher's exact tests and Wilcoxon rank sum tests; comparisons stratified by physician specialty employ Cochran-Mantel-Haenszel tests. RESULTS: Pre-intervention and post-intervention cohorts comprised 88 and 77 patients, respectively. Most were White, non-Hispanic/Latino, and married. ACP conversations were documented for 2.3% of hospitalizations pre-intervention vs. 80.5% post-intervention (p<0.001), and if the attending physician notified was a palliative care specialist (4.1% vs. 84.6%) or oncologist (0% vs. 76.3%) (p<0.001). There were no differences between groups in length of stay (LOS), hospice referral, code status change, ICU admissions or LOS, 30-day readmissions, 30-day ED visits, and inpatient and 30-day deaths. CONCLUSION: Identifying patients with cancer and high mortality risk via machine learning elicited a substantial increase in documented ACP conversations but did not impact EOL care. Our intervention showed promise in changing clinician behavior. Further integration of this model in clinical practice is ongoing.

4.
Respir Care ; 2024 Sep 10.
Artículo en Inglés | MEDLINE | ID: mdl-39256001

RESUMEN

BACKGROUND: Numerous studies have demonstrated that hospice palliative care interventions for cancer patients can reduce health care utilzation. In Taiwan, 20-25% of patients who require mechanical ventilation are using prolonged mechanical ventilation (PMV); however, only a limited number of studies have addressed the effectiveness of hospice palliative care for these patients. This study investigated the impact of hospice palliative care utilization on medical utilization among subjects using PMV. METHODS: By using the health insurance database of a nationwide population-based study, we identified subjects who had been on mechanical ventilation for > 21 d, were age ≥18 y between 2009 and 2017, and had received hospice palliative care. The control group was formed through 1:1 matching by using propensity scoring after excluding patients who had participated in palliative care for <15 d or for >181 d. Furthermore, we used a conditional logistic regression analysis to investigate the incidence of ICU admission, emergency department presentation, and cardiopulmonary resuscitation within 14 d before death. RESULTS: A total of 186,533 new subjects receiving PMV age ≥ 18 y were admitted between 2009 and 2017. In addition, the number of subjects receiving palliative care increased annually, rising from 0.6% in 2009 to 41.33% in 2017. The emergency department visits (odds ratio [OR] 0.68, 95% CI 0.63-0.74), ICU admission (OR 0.59, 95% CI 0.53-0.66), cardiopulmonary resuscitation (OR 0.40, 95% CI 0.35-0.46), and total hospitalization cost ($1,319.91 ± $1,821.66 versus $1,544.37 ± $2,309.27 [$USD], P < .001) were significant lower in the palliative care group. CONCLUSIONS: Subjects undergoing PMV while receiving hospice palliative care experienced significant reductions in total hospitalization costs, ICU admissions, cardiopulmonary resuscitation, and medical expenses within 14 d before death.

5.
Isr J Health Policy Res ; 13(1): 45, 2024 Sep 10.
Artículo en Inglés | MEDLINE | ID: mdl-39256820

RESUMEN

BACKGROUND: The term end-stage renal disease (ESRD) refers to the final stage of chronic kidney disease. Not all ESRD patients are suitable for dialysis treatment, which despite its advantages, is not without risks. Shared nephrologist-patient decision-making could be beneficial at this stage, yet little is known about such practices in Israel. This study aimed at examining the practice of shared decision-making (SDM) between nephrologists and ESRD patients in Israel, while exploring related conflicts, ethical dilemmas, and considerations. METHODS: The descriptive-quantitative approach applied in this study included a validated questionnaire for nephrologists, based on Emanual and Emanual (1992). The survey, which was distributed via social-media platforms and snowball sampling, was completed by 169 nephrologists. Data analysis included t-tests for independent samples, f-tests for analysis of variance, and t-tests and f-tests for independence. Descriptive analysis examined attitudes towards SDM in end-of-life care for ESRD patients. RESULTS: The findings show that the research sample did not include nephrologists who typically act according to the paternalistic decision-making style. Rather, 53% of the respondents were found to act in line with the informative decision-making style, while 47% act according to the interpretive decision-making style. Almost 70% of all respondents reported their discussing quality-of-life with patients; 63.4% provide prognostic assessments; 61.5% inquire about the patient's desired place of death; 58.6% ask about advance directives or power-of-attorney; and 57.4% inquire about cultural and religious beliefs in end-of-life treatment. Additionally, informative nephrologists tend to promote the patients' autonomy over their health (P < 0.001); they are also in favor of conservative treatment, compared to paternalistic and interpretive nephrologists, and use less invasive methods than other nephrologists (P = 0.02). CONCLUSIONS: Nephrologists in Israel only partially pursue an SDM model, which has the potential to improve quality-of-care for ESRD patients and their families. SDM programs should be developed and implemented for increasing such practices among nephrologists, thereby expanding the possibilities for providing conservative care at end-of-life.


Asunto(s)
Toma de Decisiones Conjunta , Fallo Renal Crónico , Nefrólogos , Cuidado Terminal , Humanos , Fallo Renal Crónico/terapia , Fallo Renal Crónico/psicología , Cuidado Terminal/métodos , Cuidado Terminal/psicología , Masculino , Femenino , Encuestas y Cuestionarios , Israel , Nefrólogos/psicología , Persona de Mediana Edad , Adulto , Actitud del Personal de Salud , Toma de Decisiones
6.
Am J Hosp Palliat Care ; : 10499091241274315, 2024 Sep 06.
Artículo en Inglés | MEDLINE | ID: mdl-39242214

RESUMEN

OBJECTIVES: In our previous study we analyzed the prevalence of demoralization in a sample of 235 end-of-life cancer patients using the Demoralization Scale (DS). The findings revealed that 50.2% of the participants reported experiencing a moderate level of demoralization. The main sub-dimensions observed from the original DS were Helplessness, Disheartenment, and Sense of Failure, which we have categorized as "Emotional Distress and Inability to Cope". The aim of this study was to qualitatively investigate the subjective experience of this factor among a group of terminal cancer patients. METHOD: A sample of 30 patients was interviewed using seven open-ended questions, divided into 3 categories: helplessness, disheartenment and sense of failure. Content analysis was performed. RESULTS: Faith and prayer, social support and preserving autonomy were the principal coping strategies used by the sample and have been classed as sources of hope. Sadness, anger, death anxiety, fear, and sickness were the most commonly expressed emotions. Faith, social support, autonomy, and fighting spirit were identified as the primary coping strategies. CONCLUSIONS: This study allowed a better understanding of the patient's subjective experience of the demoralization sub-dimension. The deepening of the topic can increase personalized clinical interventions, according to the patient's needs.

7.
Omega (Westport) ; : 302228241274969, 2024 Sep 07.
Artículo en Inglés | MEDLINE | ID: mdl-39243142

RESUMEN

The medicalization of death has left gaps in the spiritual and psychosocial well-being of the dying. Factors like professional and caregiver burnout, lack of training, overburdened caseloads and rigid schedules, and other organizational constraints lead to holistic, humane care falling through the cracks. Consequently, the dying and their families are opting to rely on individuals who can bridge these gaps-end-of-life (EOL) doulas. EOL doulas employ a variety of non-medical practices from touch therapies to legacy projects to religious rites that provide support covering the emotional, spiritual, and practical aspects of dying. Utilizing qualitative interviews with 23 EOL doulas located and working in the United States, this research offers insights into doulas' provisions of spiritual care, how death doulas' understanding of the death transition inform spiritual care provisions, as well as how death doulas navigate differences in spiritual and religious belief systems between themselves and their clients. The study emphasizes the critical role of EOL doulas in bridging gaps in end-of-life care, providing personalized, compassionate support sometimes missing in institutional settings.

8.
Australas J Ageing ; 2024 Sep 09.
Artículo en Inglés | MEDLINE | ID: mdl-39250711

RESUMEN

OBJECTIVES: To critically examine which stakeholders are participating in voluntary assisted dying (VAD) research, to identify the representation of Australians living with dementia. METHODS: A scoping review of peer-reviewed literature to examine which stakeholders are represented in Australian VAD research was conducted. This review was informed by the Arksey and O'Malley Framework for Scoping Reviews, and the Preferred Reporting Items for Scoping Reviews (PRISMA-ScR). Searches were conducted systematically across key academic databases to gather Australian research articles written in English that were published between 2017 and August 2023. RESULTS: After screening, 21 publications formed the dataset. Of the 21 publications, none of them represented Australians living with dementia. The voice of one person living with a terminal illness was included in a study of care partners, and four studies explored the views of community members. The most dominant voices in the dataset were health-care practitioners, who were represented in 16 studies. CONCLUSIONS: Australian VAD research is a contested space where all stakeholders with a relevant contribution to policy and practice must be represented in contemporary Australian research. As living experience experts with a wealth of experiential knowledge to contribute, the voices of people living with dementia need to be represented in future Australian VAD research through inclusive research design, to ensure a greater balance in stakeholder representation across the VAD literature.

9.
BMC Palliat Care ; 23(1): 224, 2024 Sep 09.
Artículo en Inglés | MEDLINE | ID: mdl-39252040

RESUMEN

BACKGROUND: French laws governing end-of-life medical practices forbid euthanasia and affirm patients' right to deep and continuous sedation until death. Cultural traditions and disparities in health care provision, as in overseas France, could limit the enforcement of such laws and modify end-of-life medical practices. AIM: This research aims to describe end-of-life medical decisions in overseas France and to compare with those described in mainland France. METHODS: A retrospective study of a random sample of adult patients who died between March 2020 and February 2021 was conducted in four overseas French departments. Physicians who certified the deaths were asked to describe end-of-life care and medical decisions in a questionnaire. RESULTS: A total of 1815 deaths were analysed over 8730 questionnaires sent. Withholding treatments was the most frequent decision (41%), treatment for pain or symptoms was intensified for a third of patients, Deep and continuous sedation until death was implemented in 13.3% cases. The use of drugs to deliberately end life was mentioned in 1.3% deaths. At least one decision was made in 61.6% deaths. More decisions that may hasten death were made before predictable deaths. Intensification of pain and symptoms treatment was more frequent in 2022 than in 2010. Deep and continuous sedation was introduced by law in 2016 without prejudice to other decisions. CONCLUSION: Physicians in overseas France have implemented recent changes in end-of-life laws, including deep and continuous sedation. Comparisons with 2010 mainland France survey show a better implementation of palliative medicine in 2022, with higher proportions of treatment withholding.


Asunto(s)
Toma de Decisiones , Cuidado Terminal , Humanos , Estudios Retrospectivos , Francia , Masculino , Cuidado Terminal/métodos , Cuidado Terminal/legislación & jurisprudencia , Cuidado Terminal/estadística & datos numéricos , Cuidado Terminal/normas , Cuidado Terminal/tendencias , Femenino , Encuestas y Cuestionarios , Persona de Mediana Edad , Anciano , Adulto , Anciano de 80 o más Años
10.
BMC Palliat Care ; 23(1): 220, 2024 Sep 04.
Artículo en Inglés | MEDLINE | ID: mdl-39232739

RESUMEN

BACKGROUND: While home is frequently expressed as the favorite place of death (PoD) among terminally ill cancer patients, various factors affect the fulfillment of this wish. The determinants of the PoD of cancer patients in countries without healthcare system-integrated palliative and supportive care have not been studied before. This study aimed at identifying the predictors of the PoD of patients who suffer from advanced cancer by developing a reliable predictive model among who received home-based palliative care in Iran as a representative of the countries with isolated provision of palliative care services. METHODS: In a cross-sectional study, electronic records of 4083 advanced cancer patients enrolled in the Iranian Cancer Control Center (MACSA) palliative homecare program, who died between February 2018 and February 2020 were retrieved. Multivariable binary logistic regression analysis as well as subgroup analyses (location, sex, marital status, and tumor topography) was performed to identify the predictors of PoD. RESULTS: Of the 2398 cases included (mean age (SD) = 64.17 (14.45) year, 1269 (%52.9) male), 1216 (50.7%) patients died at home. Older age, presence and intensity of medical homecare in the last two weeks and registration in the Tehran site of the program were associated with dying at home (P < 0.05). Gynecological or hematological cancers, presence and intensity of the calls received from the remote palliative care unit in the last two weeks were predictors of death at the hospital (p < 0.05). The model was internally and externally validated (AUC = 0.723 (95% CI = 0.702-0.745; P < 0.001) and AUC = 0.697 (95% CI = 0.631-0.763; P < 0.001) respectively). CONCLUSION: Our model highlights the demographic, illness-related and environmental determinants of the PoD in communities with patchy provision of palliative care. It also urges policymakers and service providers to identify and take the local determinant of the place of death into account to match the goals of palliative and supportive services with the patient preferences.


Asunto(s)
Servicios de Atención de Salud a Domicilio , Neoplasias , Cuidados Paliativos , Humanos , Masculino , Irán/epidemiología , Femenino , Persona de Mediana Edad , Neoplasias/terapia , Neoplasias/mortalidad , Cuidados Paliativos/métodos , Cuidados Paliativos/estadística & datos numéricos , Cuidados Paliativos/normas , Anciano , Servicios de Atención de Salud a Domicilio/estadística & datos numéricos , Servicios de Atención de Salud a Domicilio/normas , Estudios Transversales , Anciano de 80 o más Años , Adulto , Cuidado Terminal/métodos , Cuidado Terminal/estadística & datos numéricos , Cuidado Terminal/normas , Actitud Frente a la Muerte , Modelos Logísticos
11.
Br J Community Nurs ; 29(9): 423-424, 2024 Sep 02.
Artículo en Inglés | MEDLINE | ID: mdl-39240805

RESUMEN

In this month's Policy column, Iwan Dowie explores the legality behind caring for those approaching end of life.


Asunto(s)
Enfermería en Salud Comunitaria , Cuidado Terminal , Humanos , Enfermería en Salud Comunitaria/legislación & jurisprudencia , Reino Unido , Cuidado Terminal/legislación & jurisprudencia , Medicina Estatal
13.
Am J Hosp Palliat Care ; : 10499091241284262, 2024 Sep 10.
Artículo en Inglés | MEDLINE | ID: mdl-39254988

RESUMEN

CONTEXT: For many, the perception of "hospice" is synonymous with "death." Even clinicians struggle to have conversations that distinguish between hospice and palliative care for fear that discussing hospice may diminish hope. To date, there are no existing measurement tools to evaluate patient and family perceptions of hospice care. OBJECTIVE: This research aimed to develop a Hospice Perceptions Instrument (HPI) to capture these perceptions among diverse patients and families. METHODS: Building on previous studies and literature, 79 potential items were drafted for the instrument. Our interprofessional team independently and collectively evaluated these, resulting in 36 items rated on a 5-point Likert scale. Overarching domains include (1) hospice philosophy and definitions; (2) hospice services; (3) values; and (4) counter-perceptions. Sixteen national subject matter experts from various professions and roles were invited to participate in the content-validity index and five hospice caregivers were invited to participate in face validity. RESULTS: Fourteen experts responded, with ten meeting inclusion criteria: one physician, four nurses, three social workers, and two chaplains. Six of the ten identified as Black. Three items were removed (I-CVI ranged from 0.5-06), and nine items were revised (I-CVI ranged from 0.6-07). The overall Content Validity Index (CVI) was 0.83, indicating excellent content validity. After revisions, five hospice caregivers assessed face validity and no changes were made based on feedback. CONCLUSION: Results reveal a disconnect between professional expertise and patient/family voices related to hospice perceptions. Development of this instrument invites a better understanding of perceptions leading to new opportunities for patient/family engagement.

14.
Intensive Care Med ; 2024 Sep 04.
Artículo en Inglés | MEDLINE | ID: mdl-39230678

RESUMEN

PURPOSE: The aim of this study was to assess whether coaching doctors to enhance ethical decision-making in teams improves (1) goal-oriented care operationalized via written do-not-intubate and do-not attempt cardiopulmonary resuscitation (DNI-DNACPR) orders in adult patients potentially receiving excessive treatment (PET) during their first hospital stay and (2) the quality of the ethical climate. METHODS: We carried out a stepped-wedge cluster randomized controlled trial in the medical intensive care unit (ICU) and 9 referring internal medicine departments of Ghent University Hospital between February 2022 and February 2023. Doctors and nurses in charge of hospitalized patients filled out the ethical decision-making climate questionnaire (ethical decision-making climate questionnaire, EDMCQ) before and after the study, and anonymously identified PET via an electronic alert during the entire study period. All departments were randomly assigned to a 4-month coaching. At least one month of coaching was compared to less than one month coaching and usual care. The first primary endpoint was the incidence of written DNI-DNACPR decisions. The second primary endpoint was the EDMCQ before and after the study period. Because clinicians identified less PET than required to detect a difference in written DNI-DNACPR decisions, a post-hoc analysis on the overall population was performed. To reduce type I errors, we further restricted the analysis to one of our predefined secondary endpoints (mortality up to 1 year). RESULTS: Of the 442 and 423 clinicians working before and after the study period, respectively 270 (61%) and 261 (61.7%) filled out the EDMCQ. Fifty of the 93 (53.7%) doctors participated in the coaching for a mean (standard deviation [SD]) of 4.36 (2.55) sessions. Of the 7254 patients, 125 (1.7%) were identified as PET, with 16 missing outcome data. Twenty-six of the PET and 624 of the overall population already had a written DNI-DNACPR decision at study entry, resulting in 83 and 6614 patients who were included in the main and post hoc analysis, respectively. The estimated incidence of written DNI-DNACPR decisions in the intervention vs. control arm was, respectively, 29.7% vs. 19.6% (odds ratio 4.24, 95% confidence interval 4.21-4.27; P < 0.001) in PET and 3.4% vs. 1.9% (1.65, 1.12-2.43; P = 0.011) in the overall study population. The estimated mortality at one year was respectively 85% vs. 83.7% (hazard ratio 2.76, 1.26-6.04; P = 0.011) and 14.5% vs. 15.1% (0.89, 0.72-1.09; P = 0.251). The mean difference in EDMCQ before and after the study period was 0.02 points (- 0.18 to 0.23; P = 0.815). CONCLUSION: This study suggests that coaching doctors regarding ethical decision-making in teams safely improves goal-oriented care operationalized via written DNI-DNACPR decisions in hospitalized patients, however without concomitantly improving the quality of the ethical climate.

15.
Res Involv Engagem ; 10(1): 94, 2024 Sep 06.
Artículo en Inglés | MEDLINE | ID: mdl-39243054

RESUMEN

BACKGROUND: A Strategic Guiding Council (SGC) was created within a Family Carer Decisions Support study, to engage family carers of persons with advanced dementia as advisors to inform the design and implementation of the study. The SGC consists of an international group of family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, and the Czech Republic. There are limited studies that have explored the integration of Patient and Public Involvement (PPI) in dementia research, end-of-life care and long-term care. Therefore, this study explores PPI engagement in health research with family carers to understand further their interest in being involved in the SCG within the FCDS intervention which is focused on supporting caregivers to make decisions about end-of-life care for residents with advanced dementia. METHODS: This study utilized an interpretive descriptive design and explored the motivations of ten family advisors from Canada, the Republic of Ireland, the United Kingdom, and the Netherlands in being part of the SGC. Semi-structured interviews were conducted by phone or videoconferencing and were recorded, transcribed, and analyzed using thematic analysis. RESULTS: Three themes generated from the findings of the study were (1) engaging in reciprocal learning; (2) using lived experience to support other family carers; and (3) creating a collective momentum for advocacy and change. CONCLUSIONS: Family carers motivations to being part of the SCG was driven by their intent to help carers navigate the health system and to create a psychosocial support system for other carers experiencing end-of-life with their loved ones. Being part of the SCG provided a benefit to family carers which provided a venue for them to contribute meaningful information from their experience, learn from other health professionals, research and other advisors and an avenue for advocacy work to improve access to end-of-life care supports through education. To our knowledge, this is the first study that explores the motivations of an international group of family advisors' engagement in health research to promote integration of a palliative approach to dementia care in long-term care homes. This study further contributes to the literature from an international perspective the importance of PPI in research. Further research is warranted that explores PPI in research to improve access to end-of-life supports.


Patient and public involvement (PPI) in research has been growing worldwide and ensures that research conducted is relevant to the needs of patients. Within the Family Carer Decisions Support study, we created a Strategic Guiding Council (SGC) to engage family carers of persons with advanced dementia as advisors to improve access to a palliative approach to care. The SGC includes family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, Italy and the Czech Republic. The goal of the strategy was to engage with family advisors in research activities to improve access to a palliative approach and quality of care provided to people with dementia receiving end-of-life care. Including patients and family in research is extremely important, therefore our aim in this study was to explore family advisors' motivations to engaging in the SGC. Family advisors reported encountering challenges with navigating the health system with end-of-life care and they chose to participate in the SGC to support other carers who are experiencing a similar situation. Being part of the SGC also provided the family advisors with an avenue to advocate on the importance of improving access to end-of-lifesupports and the opportunity to learn from other advisors, health professionals and researchers.

16.
Can J Nurs Res ; : 8445621241281993, 2024 Sep 09.
Artículo en Inglés | MEDLINE | ID: mdl-39248162

RESUMEN

BACKGROUND: Since legalization of Medical Assistance in Dying in Canada in 2016, nurses are increasingly faced with new and evolving communication challenges as patients in a diversity of settings and contexts contemplate their end-of-life options. PURPOSE: The purposes of this study were: 1) to develop an understanding of the nuances and challenges associated with MAID-related communication from the perspective of registered nurses, and 2) to draw on the insights arising from this analysis to reflect on the evolution of MAID communication for nurses over time. METHODS: This study represented a secondary analysis of two primary qualitative data sets, including: 74 interviews of Canadian registered nurses self-identifying as having some exposure to MAID in their clinical practice; and 47 narrative reflections volunteered by respondents to questions posed in an online MAID reflective guide for nurses. RESULTS: Nurses described evolving complexities associated with introducing and engaging with the topic of MAID with their patients, helping patients navigate access to MAID assessment, managing family and community dynamics associated with opinions and beliefs surrounding MAID, supporting patients in their planning toward a MAID death, and being there for patients and their families in the moment of MAID. CONCLUSIONS: MAID communication is highly complex, individualized, and context-specific. It is apparent that many nurses have developed an impressive degree of comfort and skill around navigating its nuances within a rapidly evolving legislative context. It is also apparent that dedicated basic and continuing MAID communication education will warranted for registered nurses in all health care settings.

17.
Soins Gerontol ; 29(169): 24-29, 2024.
Artículo en Francés | MEDLINE | ID: mdl-39245540

RESUMEN

The ageing of Western societies is leading to a marked increase in mortality. Death and old age are now intertwined. This situation should be of particular concern to palliative care. But in reality, palliative care remains too inaccessible to the oldest sections of the population. Why this paradox? After reviewing the clinical and organisational reasons that are often given, we invite you to take a more global look, one that is both sociological and ethical.


Asunto(s)
Cuidados Paliativos , Poblaciones Vulnerables , Humanos , Cuidados Paliativos/ética , Anciano , Servicios de Salud para Ancianos/ética , Anciano de 80 o más Años
18.
Am J Hosp Palliat Care ; : 10499091241281052, 2024 Sep 08.
Artículo en Inglés | MEDLINE | ID: mdl-39245929

RESUMEN

BACKGROUND: Treatment at high-volume facilities (HVF) has been associated with improved prognosis of HNC patients undergoing curative treatment. Whether this systemic factor influences survival outcomes of patients with HNC undergoing palliative treatment is unknown. AIM: To investigate the impact of palliative treatment facility volume on overall survival (OS) in patients with head and neck cancer (HNC). DESIGN: The 2004 to 2018 National Cancer Database was queried retrospectively for patients with HNC undergoing palliative treatment. SETTING/PARTICIPANTS: Patients were stratified based on treatment facility volume percentile. Multivariable binary logistic and Cox proportional hazards regression models were implemented. RESULTS: Of 8682 patients included, 1661 (19.1%) underwent palliative therapy at facilities with volume ≥80th percentile. Among 972 facilities included, 643 (66.2%), 182 (18.7%), 85 (8.8%), 44 (4.5%), and 18 (1.9%) had volume <20th, 20-40th, 40-60th, 60-80th, and ≥80th percentiles, respectively. 5-year OS rates of patients undergoing palliative therapy at facilities with volume <20th, 20-40th, 40-60th, 60-80th, and ≥80th percentile was 11%, 13%, 11%, 14%, and 23%, respectively (P < .001). Facility volume ≥80th percentile was associated with higher 5-year OS on multivariable Cox regression (aHR 0.34, 95% CI 0.16-0.69, P < .001). Surgical treatment (aOR 1.34, 95% CI 1.07-1.68, P = .012) was associated with undergoing treatment at facilities with volume ≥80th percentile. CONCLUSIONS: Undergoing palliative treatment at HVFs is associated with higher OS in HNC. The survival benefit derived from high facility volume should be carefully considered in the context of other patient and facility characteristics in end-of-life management, with specific emphasis on patient-directed goals of care.

19.
Glob Qual Nurs Res ; 11: 23333936241273199, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39257920

RESUMEN

Although many large Chinese cities have begun to implement hospice services, hospice care is still a relatively new concept in many parts of the country, especially in smaller cities. The purpose of this study was to gain a better understanding of health care providers' (physicians and nurses) perceptions of the facilitators and barriers to hospice care implementation in a fourth-tier city. Using a qualitative descriptive approach, semi-structured, open-ended interviews were conducted with 15 health care providers. Two major categories for developing hospice care were identified: (a) prospective facilitators and (b) perceived barriers. In addition, there is currently much ambiguity regarding what agency should oversee hospice services if implemented, who should be responsible for payment, the importance of developing interdisciplinary care teams and concerns about worker shortages. Future research is encouraged to investigate attitudes towards hospice care across various local healthcare systems and to promote the development of local hospice care support.

20.
Front Public Health ; 12: 1346234, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39257943

RESUMEN

Background: Paying attention to palliative care has accelerated in Iran in the last 10 years. Considering the trend of aging, increasing burden of chronic diseases and increasing health costs, planning and development of palliative care is necessary in the future. This study was conducted with the aim of explaining the alternative scenarios of palliative care in the health system of Iran until the horizon of 2030. Methods: This study was a multi-method scenario planning with a qualitative using multiple methods design, which was conducted in 3 phases in 2018-2020. In the first phase, a list of driving forces was extracted using qualitative interviews and literature review. In the second phase, all factors identified in the previous phase were examined in terms of degree of uncertainty and cross-impact analysis, and two key uncertainties were extracted. In the third phase, based on two key uncertainties, four future scenarios of palliative care were formulated, validated and scenario strategies were presented. Results: The results indicate two uncertainties, including "governance of palliative care in the health system" and "acceptance of palliative care by society," based on which, four scenarios with the names "climbing to the top," "excruciating climb," "edge of the abyss" and "The bottom of the valley" were compiled. Conclusion: The development of palliative care in health system of Iran is faced with serious uncertainties that it is necessary to focus the developmental activities of palliative care on the two axes of acceptance by society and need for coherent governance by considering all the dimensions and influential components by ministry of health. The application of the results of this research can provide reasonable options for effective interventions and implementation of this category of services to the beneficiaries of palliative care.


Asunto(s)
Cuidados Paliativos , Irán , Humanos , Investigación Cualitativa , Atención a la Salud , Predicción , Incertidumbre
SELECCIÓN DE REFERENCIAS
DETALLE DE LA BÚSQUEDA