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1.
Oncologist ; 29(4): e553-e560, 2024 Apr 04.
Artigo em Inglês | MEDLINE | ID: mdl-37758042

RESUMO

BACKGROUND: Symptom burdens tend to increase for patients with cancer and their families over the disease trajectory. There is still a lack of evidence on the associations between symptom changes and the quality of dying and death. In this context, this research investigated how symptom changes influence the quality of dying and death. METHODS: This international prospective cohort study (the East Asian Collaborative Cross-Cultural Study to Elucidate the Dying Process (EASED), 2017-2019) included 22, 11, and 4 palliative care units across Japan, South Korea, and Taiwan. Eligible participants were adults (Japan and Korea, ≥18 years; Taiwan, ≥20 years) with locally advanced or metastatic cancer. Physical and psychological symptoms were assessed by physicians upon admission and within 3 days before death. Death quality was assessed using the Good Death Scale (GDS), developed in Taiwan. Univariate and multivariate regression analyses were used to identify correlations between symptom severity changes and GDS scores. RESULTS: Among 998 patients (542 [54.3%] men and 456 [45.7%] women; mean [SD] age = 70.1 [± 12.5] years), persistent dyspnea was associated with lower GDS scores when compared to stable dyspnea (ß = -0.427, 95% CI = -0.783 to -0.071). Worsened (-1.381, -1.932 to -0.831) and persistent (-1.680, -2.701 to -0.659) delirium were also significantly associated with lower GDS scores. CONCLUSIONS: Better quality of dying and death was associated with improved symptom control, especially for dyspnea and delirium. Integrating an outcome measurement for the quality of dying and death is important in the management of symptoms across the disease trajectory in a goal-concordant manner.


Assuntos
Neoplasias , Cuidados Paliativos , Assistência Terminal , Idoso , Feminino , Humanos , Masculino , Comparação Transcultural , Delírio , Dispneia , População do Leste Asiático , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Estudos Prospectivos , Assistência Terminal/psicologia , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais
2.
Support Care Cancer ; 32(11): 746, 2024 Oct 25.
Artigo em Inglês | MEDLINE | ID: mdl-39453514

RESUMO

BACKGROUND: Since 2017, terminally ill parents with dependent children under the age of 18 have been able to record an audiobook for their dependent children. This service allows them to narrate how they would like to be remembered in their voice. The family audiobook is a professionally supported, voluntary, free service that is unique in Germany. There is little research on digital memories for children. The study aims to understand how this service is used and its influence on children through responses of terminally ill parents and close persons. METHODS: An anonymous online survey, accessible between September 2023 and November 2023, was conducted among terminally ill parents and their close persons with support from the Family Audiobook Association in Germany. Analyses were carried out using SPSS. RESULTS: 186 respondents, 95 terminally ill parents, and 91 close persons completed the online survey. Almost all terminally ill parents felt eased to have recorded a family audiobook. The two groups showed differences in how they used the family audiobook and how often they listened to it. While some children listen to the family audiobook with their bereaved parents or friends, other children are not yet ready for this, according to the open-ended responses of terminally ill parents and close persons. CONCLUSIONS: The family audiobook provides a valuable opportunity for terminally ill parents with dependent children under the age of 18 to tell their own biographical story, offer support to the bereaved in remembering, and preserve the voice of the deceased for the children. In addition, this approach could help healthcare professionals to reduce the stress associated with providing end-of-life care for terminally ill parents.


Assuntos
Pesar , Pais , Doente Terminal , Humanos , Masculino , Feminino , Criança , Alemanha , Doente Terminal/psicologia , Adulto , Inquéritos e Questionários , Pais/psicologia , Pessoa de Meia-Idade , Adolescente , Pré-Escolar , Idoso
3.
Palliat Med ; 38(1): 131-139, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38087831

RESUMO

BACKGROUND: The fear of taking away hope hinders clinicians' willingness to share serious news with patients with advanced disease. Unrealistic illness expectations, on the other hand, can complicate decision making and end-of-life care outcomes. Exploration of the association between hope and illness expectations can support clinicians in better communication with their patients. AIM: The aim of this study was to explore whether realistic illness expectations are associated with reduced hope in people with advanced cancer. DESIGN: This is a cross-sectional secondary analysis of baseline data from a primary palliative care cluster-randomized trial CONNECT (data collected from July 2016 to October 2020). Hope was measured by Herth Hope Index. Illness expectations were measured by assessing patients' understanding of their treatment goals, life expectancy, and terminal illness acknowledgement. Multivariable regression was performed, adjusting for demographical and clinical confounders. SETTING/PARTICIPANTS: Adult patients with advanced solid cancers recruited across 17 oncology clinics. RESULTS: Data from 672 patients were included in the study, with mean age of 69.3 years (±10.2), 53.6% were female. Proportion of patients indicating realistic expectations varied based on which question was asked from 10% to 46%. Median level of hope was 39 (IQR = 36-43). Multivariate non-inferiority regression did not find any significant differences in hope between patients with more and less realistic illness expectations. CONCLUSIONS: Our results suggest that hope can be sustained while holding both realistic and unrealistic illness expectations. Communication about serious news should focus on clarifying the expectations as well as supporting people's hopes.


Assuntos
Neoplasias , Assistência Terminal , Adulto , Idoso , Feminino , Humanos , Masculino , Estudos Transversais , Esperança , Motivação , Neoplasias/terapia , Cuidados Paliativos/métodos , Pessoa de Meia-Idade , Ensaios Clínicos Controlados Aleatórios como Assunto
4.
Palliat Med ; 38(5): 546-554, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38654605

RESUMO

BACKGROUND: 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. AIM: 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. DESIGN: 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. SETTING/PARTICIPANTS: 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. RESULTS: 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. CONCLUSION: 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.


Assuntos
Cuidados Paliativos , Assistência Terminal , Humanos , Masculino , Feminino , Idoso , Estudos Retrospectivos , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Austrália , Estudos de Coortes , Adulto , Fatores de Tempo , Avaliação de Estado de Karnofsky
5.
Palliat Med ; 38(5): 535-545, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38767241

RESUMO

BACKGROUND: 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. AIM: To determine the diagnostic accuracy of the 4AT in detecting delirium in terminally ill people, who are hospice inpatients. DESIGN: 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. SETTING/PARTICIPANTS: Two hospice inpatient units in Scotland, UK. Participants were 148 hospice inpatients aged ⩾18 years. RESULTS: 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). CONCLUSION: 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. TRIAL REGISTRY: ISCRTN 97417474.


Assuntos
Delírio , Pacientes Internados , Humanos , Delírio/diagnóstico , Masculino , Feminino , Idoso , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Cuidados Paliativos na Terminalidade da Vida , Doente Terminal , Sensibilidade e Especificidade , Hospitais para Doentes Terminais , Reprodutibilidade dos Testes , Adulto
6.
J Med Ethics ; 2024 Sep 24.
Artigo em Inglês | MEDLINE | ID: mdl-39317419

RESUMO

One argument for the permissibility of euthanasia found in the African philosophical tradition suggests that the sole goal of life is to develop one's vital force, which is done by relating harmoniously with one's community. However, this is impossible for people with certain medical conditions. If the goals of life cannot be achieved, then euthanasia is permissible. I challenge this argument by showing that it overlooks the fact that severely ill patients can still be the objects of communal relationships, in addition to a way for caregivers to strengthen their own vital force. I also suggest that usual readings of vital force imply that life itself is to be preserved at all costs and that this acts as a kind of deontological constraint.

7.
J Med Ethics ; 50(2): 108-114, 2024 Jan 23.
Artigo em Inglês | MEDLINE | ID: mdl-37321835

RESUMO

The purpose of this paper is to identify a kind of discrimination that has hitherto gone unrecognised. 'Terminalism' is discrimination against the dying, or treating the terminally ill worse than they would expect to be treated if they were not dying. I provide four examples from healthcare settings of this kind of discrimination: hospice eligibility requirements, allocation protocols for scarce medical resources, right to try laws and right to die laws. I conclude by offering some reflections on why discrimination against the dying has been hard to identify, how it differs from ageism and ableism, and its significance for end-of-life care.


Assuntos
Etarismo , Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Doente Terminal
8.
BMC Palliat Care ; 23(1): 175, 2024 Jul 17.
Artigo em Inglês | MEDLINE | ID: mdl-39020352

RESUMO

INTRODUCTION: Terminal illness is an irreversible illness that, without life-sustaining procedures, usually results in death or permanent disability from which recovery is unlikely. When involved, family caregivers are believed to improve health outcomes, such as reduced hospitalization, and establishing a patient's initial access to professional treatment services. However, caring for a patient with a terminal illness is viewed as one of the most difficult aspects of providing care. This study aimed to identify the challenges, and coping strategies developed by family caregivers to cope with the care of the terminally ill person. METHODS: An exploratory descriptive qualitative approach was used. Twenty (20) family caregivers voluntarily participated in the study from the Korle-Bu Teaching Hospital. Semi-structured interviews were conducted with the participants. The transcribed interviews were then analysed using thematic analysis. RESULTS: From the analysis, three main themes emerged: challenges, coping strategies, and social support. These themes encompassed sixteen subthemes including financial burden, bad health conditions, faith and prayer, and support from health professionals. From the study, both male and female family caregivers narrated that providing care for sick relatives undergoing terminal disease is characterized as a daily duty demanding one's time and fraught with emotional strain. In addition, even though it was a difficult job, family members who provided care for ailing relatives never gave up, citing responsibility, the importance of family, and religious beliefs as the primary motivations for doing so. CONCLUSION: The difficulties and demands of family caregiving roles for terminally ill relatives are complex and multifactorial. The findings call for multidisciplinary professional attention for family caregivers and policies that will support their lives holistically.


Assuntos
Adaptação Psicológica , Cuidadores , Neoplasias , Pesquisa Qualitativa , Doente Terminal , Humanos , Masculino , Feminino , Cuidadores/psicologia , Pessoa de Meia-Idade , Adulto , Idoso , Neoplasias/psicologia , Doente Terminal/psicologia , Apoio Social , Família/psicologia , Idoso de 80 Anos ou mais , Entrevistas como Assunto/métodos , Capacidades de Enfrentamento
9.
Palliat Support Care ; 22(4): 783-791, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38482668

RESUMO

OBJECTIVES: Dignity therapy (DT) is well-established in adults, and it might potentially benefit the younger population. This study aims to develop a pediatric family-based dignity therapy (P-FBDT) protocol for terminally ill children and their families. METHODS: A parallel mixed-methods design was used. The P-FBDT protocol was developed based on the adult DT, and meanwhile by taking children-specific dignity characteristics and Chinese family-oriented culture into consideration. The protocol was then evaluated and modified based on the quantitative and qualitative feedback from 2-round surveys of 14 pediatric oncology or pediatric palliative care experts. RESULTS: The P-FBDT involves terminally ill children and their families in meaningful interactions including a series of conversations and creative activities, which will be recorded and then edited into a document-based generativity entity. The P-FBDT protocol was recognized as highly reasonable and the P-FBDT interview guide was endorsed as important, acceptable, clear, comprehensive, and suitable to be used in pediatric palliative care practice in Chinese culture (>90%). Potential benefits, possible challenges, and practical considerations of the P-FBDT were also proposed. SIGNIFICANCE OF RESULTS: The P-FBDT was perceived to be potentially beneficial to terminally ill children and their families by engaging in a series of meaningful family interactions and creating a lasting memento to be preserved. The protocol needs to be pilot tested among terminally ill children and families for feasibility and potential efficacy in practice.


Assuntos
Doente Terminal , Humanos , Criança , Doente Terminal/psicologia , Adolescente , Masculino , Feminino , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos/psicologia , Pesquisa Qualitativa , Família/psicologia , Inquéritos e Questionários , Respeito , Pediatria/métodos , Pediatria/normas , Pessoalidade , China , Terapia da Dignidade
10.
Palliat Support Care ; : 1-7, 2024 Jan 25.
Artigo em Inglês | MEDLINE | ID: mdl-38269445

RESUMO

OBJECTIVES: In Chochinov's dignity model, living in the here and now (mindful living) is explicitly stated as a dignity-conserving practice. However, what facilitates mindful living remain unclear. This study aims to investigate the mechanisms of mindful living among Asian terminally ill patients. METHODS: This interpretative phenomenological analysis comprised patients aged 50 and above with a prognosis of less than 12 months. Fifty interview transcripts from a larger Family Dignity Intervention study conducted in Singapore were used for the analysis. RESULTS: Findings revealed 12 themes that were organized into 3 axioms of mindful living for dignified dying: (a) purposive self-awareness, (b) family-centered attention, and (c) attitudes of mortality acceptance. Through purposive self-awareness, patients introspected their lived experience with illness and anticipated death to find resilience and contentment. Patients' conscious family-centered attention revolved around their relationships, achievements, and legacy within the family, leading to a deepened sense of interconnectedness with self and beloved others at life's end. Lastly, patients adopted nonjudgmental attitudes of mortality acceptance as they made necessary arrangements in preparation for their death, allowing them to treasure every living moment and obtain a closure in life. An empirical model of mindful living for dignified dying was developed based on these emerging themes, illustrating the interweaving of intention, attention, and attitude for facilitating meaningful living in the face of mortality. SIGNIFICANCE OF RESULTS: Mindful living is a dignity-preserving practice, which helps terminally ill patients to find tranquility in each present moment despite their impending death. The identified mechanisms of mindful living lay important groundwork for a new understanding and possible directions for culture-specific, mindfulness-based, family-centered interventions suited to terminally ill patients in the Asian context.

11.
Indian J Crit Care Med ; 28(1): 15-17, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38510766

RESUMO

The Supreme Court (SC) verdict of 2023 has been welcomed by the medical community in India by those who treat patients with terminal or advanced illnesses. The earlier verdict of the apex court in 2018 was ground-breaking in allowing for advanced directives (ADs) by patients in terms of their preferences at the end of life. However, it was an impractical and lengthy process in the Indian context. The recent verdict has simplified the process of withdrawal of life support, making it more practical. The authority to withdraw life support in dying patients is now also with the treating physician, the hospital, the primary medical board, and the secondary board. This article examines ethical issues related to the specifics of the judgment with respect to those who do not have ADs in India. The present article emphasizes the need for self-regulation, credentialing, and continuing medical education in critical care and palliative medicine. In the absence of these, who will guard the guardians? How to cite this article: Menon MR. Ethics and Medicolegal Aspects of Withdrawal of Treatment in Critical Care Patients without Advanced Directives in India: Who will Guard the Guardians Themselves? Indian J Crit Care Med 2024;28(1):15-17.

12.
Gynecol Oncol ; 172: 1-8, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36905767

RESUMO

OBJECTIVE: To examine hospital-based specialist palliative care (SPC) utilisation among patients with gynaecological cancer, including temporal trends, predictors and associations with high-intensity end-of-life care. METHODS: We conducted a nationwide registry-based study for all patients dying from gynaecological cancer in Denmark during 2010-2016. We estimated the proportions of patients receiving SPC by year of death and used regression analyses to examine predictors of SPC utilisation. Use of high-intensity end-of-life care according to SPC utilisation was compared by regression analyses adjusting for type of gynaecological cancer, year of death, age, comorbidities, residential region, marital/cohabitation status, income level and migrant status. RESULTS: Among 4502 patients dying from gynaecological cancer, the proportion of patients receiving SPC increased from 24.2% in 2010 to 50.7% in 2016. Young age, three or more comorbidities, residence outside the Capital Region and being immigrant/descendant were associated with increased SPC utilisation, whereas income, cancer type and stage were not. SPC was associated with lower high-intensity end-of-life care utilisation. Particularly, when compared with patients not receiving SPC, patients who accessed SPC >30 days before death had 88% lower risk of intensive care unit admissions within 30 days before death (adjusted relative risk: 0.12 (95% CI: 0.06; 0.24)) and 96% lower risk of surgery within 14 days before death (adjusted relative risk: 0.04 (95% CI: 0.01; 0.31)). CONCLUSIONS: Among patients dying from gynaecological cancer, SPC utilisation increased over time and age, comorbidities, residential region and migrant status were associated with access to SPC. Furthermore, SPC was associated with lower use of high-intensity end-of-life care.


Assuntos
Neoplasias dos Genitais Femininos , Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Assistência Terminal , Feminino , Humanos , Cuidados Paliativos , Neoplasias dos Genitais Femininos/terapia , Hospitais
13.
Palliat Med ; 37(8): 1100-1128, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37489074

RESUMO

BACKGROUND: People with an advanced progressive illness and their caregivers frequently experience anxiety, uncertainty and anticipatory grief. Traditional approaches to address psychological concerns aim to modify dysfunctional thinking; however, this is limited in palliative care, as often concerns area valid and thought modification is unrealistic. Acceptance and Commitment Therapy is a mindfulness-based behavioural therapy aimed at promoting acceptance and valued living even in difficult circumstances. Evidence on its value in palliative care is emerging. AIMS: To scope the evidence regarding Acceptance and Commitment Therapy for people with advanced progressive illness, their caregivers and staff involved in their care. DESIGN: Systematic scoping review using four databases (Medline, PsychInfo, CINAHL and AMED), with relevant MeSH terms and keywords from January 1999 to May 2023. RESULTS: 1,373 papers were identified and 26 were eligible for inclusion. These involved people with advanced progressive illness (n = 14), informal caregivers (n = 4), palliative care staff (n = 3), bereaved carers (n = 3), and mixed groups (n = 2). Intervention studies (n = 15) showed that Acceptance and Commitment Therapy is acceptable and may have positive effects on anxiety, depression, distress, and sleep in palliative care populations. Observational studies (n = 11) revealed positive relationships between acceptance and adjustment to loss and physical function. CONCLUSION: Acceptance and Commitment Therapy is acceptable and feasible in palliative care, and may improve anxiety, depression, and distress. Full scale mixed-method evaluation studies are now needed to demonstrate effectiveness and cost-effectiveness amongst patients; while further intervention development and feasibility studies are warranted to explore its value for bereaved carers and staff.


Assuntos
Terapia de Aceitação e Compromisso , Cuidadores , Humanos , Cuidadores/psicologia , Cuidados Paliativos/psicologia , Pesar , Ansiedade/terapia
14.
Palliat Med ; 37(1): 61-74, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36349371

RESUMO

BACKGROUND: Timely and effective communication about end-of-life issues, including conversations about prognosis and goals of care, are extremely beneficial to terminally ill patients and their families. However, given the context, healthcare professionals may find it challenging to initiate and facilitate such conversations. Hence, it is critical to improving the available communication strategies to enhance end-of-life communication practices. AIM: To summarise the end-of-life communication strategies recommended for healthcare professionals, identify research gaps and inform future research. DESIGN: A scoping review performed in accordance with the Arksey and O'Malley framework. DATA SOURCES: A literature search was conducted between January 1990 and January 2022 using PubMed, CINAHL, Embase, PsycINFO, Web of Science, Scopus, Cochrane Library and China National Knowledge Infrastructure databases and Google, Google Scholar and ProQuest Dissertations & Theses Global. Studies that described recommended end-of-life communication strategies for healthcare professionals were included. RESULTS: Fifty-nine documents were included. Seven themes of communication strategies were found: (a) preparation; (b) exploration and assessment; (c) family involvement; (d) provision and tailoring of information; (e) empathic emotional responses; (f) reframing and revisiting the goals of care; and (g) conversation closure. CONCLUSIONS: The themes of communication strategies found in this review provide a framework to integrally promote end-of-life communication. Our results will help inform healthcare professionals, thereby promoting the development of specialised training and education on end-of-life communication.


Assuntos
Comunicação , Pessoal de Saúde , Assistência Terminal , Humanos , Bibliometria , Morte , Atenção à Saúde , Pessoal de Saúde/psicologia
15.
Palliat Med ; 37(4): 460-474, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36475950

RESUMO

BACKGROUND: Lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) individuals experience discrimination throughout the care continuum, including during serious illness and at end of life. High-quality palliative care requires that health professionals deliver individualized services that reflect the needs, experiences, and preferences of LGBTQ+ persons. AIM: To identify and appraise existing evidence related to the needs, experiences, and preferences for palliative and end of life care among LGBTQ+ individuals with serious illness. DESIGN: Data-based convergent synthesis design reported per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. DATA SOURCES: PubMed, Embase, Cochrane CENTRAL, PsycINFO, CINAHL, and Scopus from January 1, 2010 to November 6, 2020. RESULTS: Of 4875 results captured, 69 articles underwent full-text review and 13 were retained for analysis. Most studies were from North America with trans individuals represented in 10 of 13 studies. Needs (n = 6) included increased social support, institutional safety, economic and legal supports, and advocacy to mitigate health barriers.Experiences (n = 12) were driven by fear and worry associated with discrimination/stigma,providers' hetero-/cisnormative assumptions, homophobia and transphobia, social isolation, and an undignified death. Preferences (n = 6) pertained to inclusion of chosen families in decision-making, disclosure of LGBTQ+ identity based on safety of the clinical environment, and a desire to maintain autonomy. CONCLUSIONS: The robustness of the science has improved regarding the needs, experiences, and preferences of trans individuals. Actionable, inclusive policies coupled with sustained and integrated cultural sensitivity training for health workers are mandatory. Interventional research is critical to enhance tailored palliative care for LGBTQ+ people and their chosen families.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Minorias Sexuais e de Gênero , Assistência Terminal , Feminino , Humanos , Comportamento Sexual , Cuidados Paliativos
16.
Bioethics ; 37(2): 165-170, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36417661

RESUMO

The aim of this article is to present and critically investigate a type of argument against legalising assisted dying on request (ADR) for patients who are terminally ill and experiencing suffering. This type of argument has several variants. These-which we call 'autonomy-based arguments' against legalising ADR-invoke different specifications of the premise that we ought not to respect requests for assistance in dying made by terminally ill and suffering patients because the basic conditions of autonomy cannot be met in scenarios where such requests are made. Specifically, it is argued either (1) that as a result of pain, anxiety or desperation, terminally ill patients are not competent decision makers or (2) that legalisation of ADR would lead to social pressure or in other ways change the patient's context of choice in ways that make such requests nonautonomous. We argue that these types of arguments are problematic in light both of empirical studies and the fact that we usually judge that it is morally right to respect the wishes and decisions of dying people even if they suffer.


Assuntos
Suicídio Assistido , Humanos , Doente Terminal , Dissidências e Disputas , Dor , Relações Interpessoais , Autonomia Pessoal
17.
BMC Palliat Care ; 22(1): 86, 2023 Jul 05.
Artigo em Inglês | MEDLINE | ID: mdl-37407969

RESUMO

BACKGROUND: The Chochinov Dignity Model was developed based on a cohort of adult patients with advanced cancer, but its role among dying children is not clear. This study aims to develop a model of dignity for children receiving pediatric palliative care based on the Chochinov Dignity Model. METHODS: This is a descriptive qualitative study. Participants included a total of 11 parents and 14 healthcare providers who were recruited from a tertiary children's hospital in Beijing and the Pediatric Palliative Care Subspecialty Group of the Pediatrics Society of the Chinese Medical Association using purposive sampling. Thematic framework analysis was used to analyze data. RESULTS: The themes of the empirical Dignity Model were broadly supported in this study, but some themes were interpreted differently in the child population. Compared with the original model, some child-specific themes were identified including acknowledging regret, a sense of security, the company of important loved ones, realizing unfinished wishes, decent and dignified death, resolving family disputes, and fairness. CONCLUSIONS: This is the first study on Dignity Model for terminal children. Knowledge of children's dignity can promote reflection of healthcare providers and caregivers regarding the values underlying their performance in pediatric palliative care, and develop certain practical interventions to strengthen children and their families' sense of dignity at end of life.


Assuntos
Cuidados Paliativos , Doente Terminal , Adulto , Humanos , Criança , Respeito , Pais , Pessoal de Saúde , Pesquisa Qualitativa
18.
BMC Palliat Care ; 22(1): 34, 2023 Apr 04.
Artigo em Inglês | MEDLINE | ID: mdl-37013598

RESUMO

BACKGROUND: Clinical experts experienced challenges in the practice of palliative sedation (PS) during the COVID-19 pandemic. Rapid deterioration in patients' situation was observed while the indications for starting PS seemed to differ compared to other terminal patients. It is unclear to which extent clinical trajectories of PS differ for these COVID patients compared to regular clinical practice of PS. OBJECTIVES: To describe the clinical practice of PS in patients with COVID versus non-COVID patients. METHODS: A retrospective analysis of data from a Dutch tertiary medical centre was performed. Charts of adult patients who died with PS during hospitalisation between March '20 and January '21 were included. RESULTS: During the study period, 73 patients received PS and of those 25 (34%) had a COVID infection. Refractory dyspnoea was reported as primary indication for starting PS in 84% of patients with COVID compared to 33% in the other group (p < 0.001). Median duration of PS was significantly shorter in the COVID group (5.8 vs. 17.1 h, p < 0.01). No differences were found for starting dosages, but median hourly dose of midazolam was higher in the COVID group (4.2 mg/hr vs. 2.4 mg/hr, p < 0.001). Time interval between start PS and first medication adjustments seemed to be shorter in COVID patients (1.5 vs. 2.9 h, p = 0.08). CONCLUSION: PS in COVID patients is characterized by rapid clinical deterioration in all phases of the trajectory. What is manifested by earlier dose adjustments and higher hourly doses of midazolam. Timely evaluation of efficacy is recommended in those patients.


Assuntos
COVID-19 , Neoplasias , Assistência Terminal , Adulto , Humanos , Midazolam/uso terapêutico , Cuidados Paliativos , Hipnóticos e Sedativos/uso terapêutico , Estudos Retrospectivos , Pandemias , Neoplasias/tratamento farmacológico
19.
J Korean Med Sci ; 38(9): e66, 2023 Mar 06.
Artigo em Inglês | MEDLINE | ID: mdl-36880107

RESUMO

BACKGROUND: Antimicrobial prescriptions for serious chronic or acute illness nearing its end stages raise concerns about the potential for futile use, adverse events, increased multidrug-resistant organisms, and significant patient and social cost burdens. This study investigated the nationwide situation of how antibiotics are prescribed to patients during the last 14 days of life to guide future actions. METHODS: This nationwide multicenter retrospective cohort study was conducted at 13 hospitals in South Korea from November 1 to December 31, 2018. All decedents were included in the study. Antibiotic use during the last two weeks of their lives was investigated. RESULTS: A total of 1,201 (88.9%) patients received a median of two antimicrobial agents during the last two weeks of their lives. Carbapenems were prescribed to approximately half of the patients (44.4%) in the highest amount (301.2 days of therapy per 1,000 patient-days). Among the patients receiving antimicrobial agents, 63.6% were inappropriate and only 327 patients (27.2%) were referred by infectious disease specialists. The use of carbapenem (odds ratio [OR], 1.51; 95% confidence interval [CI], 1.13-2.03; P = 0.006), underlying cancer (OR, 1.56; 95% CI, 1.20-2.01, P = 0.047), underlying cerebrovascular disease (OR, 1.88; 95% CI, 1.23-2.89, P = 0.004), and no microbiological testing (OR, 1.79; 95% CI, 1.15-2.73; P = 0.010) were independent predictors for inappropriate antibiotic prescribing. CONCLUSION: A considerable number of antimicrobial agents are administered to patients with chronic or acute illnesses nearing their end-of-life, a high proportion of which are prescribed inappropriately. Consultation with an infectious disease specialist, in addition to an antimicrobial stewardship program, may be necessary to induce the optimal use of antibiotics.


Assuntos
Antibacterianos , Doenças Transmissíveis , Humanos , Antibacterianos/uso terapêutico , Estudos Retrospectivos , Carbapenêmicos/uso terapêutico , República da Coreia
20.
Aust Occup Ther J ; 70(1): 18-31, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-35791064

RESUMO

INTRODUCTION: As the majority of occupational therapy philosophy has Western origins, occupational therapists working with palliative care clients in Singapore can provide invaluable insight into the practice of occupational therapy within a non-Western, family-centric population. This study aimed to describe occupational therapists' perceptions of the occupations of terminally ill Chinese older adults and their caregivers and explore occupational therapy practice with terminally ill Chinese older adults in Singapore. METHODS: Eleven occupational therapists were recruited via convenience and snowball sampling. Inclusion criteria were being fully registered with the Allied Health Professionals Council (Singapore) with at least 2 years of working experience and currently working with/had experience working with terminally ill patients within the past 2 years. Interviews were transcribed verbatim, and data were analysed using reflexive thematic analysis. FINDINGS: Five themes were constructed from the data: (1) Independence may not be for everyone, (2) it is a family unit, (3) contributing to others' lives is important, (4) what respecting clients means, and (5) a different way of engaging. These themes describe how occupational therapists adapted their practice to better meet the needs of clients and families in Singapore. DISCUSSION: In family-centric societies, it may be more relevant for occupational therapists to facilitate interdependence instead of independence in activities of daily living. In addition, activities that contribute to others' lives tangibly/intangibly may be more meaningful and relevant. Finally, occupational therapists could engage clients through the 'being' instead of 'doing' dimension of occupation. CONCLUSION: While occupational therapists in Singapore faced some challenges working with terminally ill clients and families due to differences between occupational therapy philosophy and practice context, by reframing their thinking, they were able to adapt their practices to meet the needs of a family-centric population.


Assuntos
Terapia Ocupacional , Humanos , Idoso , Atividades Cotidianas , Doente Terminal , Singapura , População do Leste Asiático , Terapeutas Ocupacionais
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