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1.
BMC Health Serv Res ; 21(1): 700, 2021 Jul 16.
Artigo em Inglês | MEDLINE | ID: mdl-34271934

RESUMO

BACKGROUND: Advance care planning (ACP) and advance care directive (ACD) completion improve outcomes for patients, family, clinicians and the healthcare system. However, uptake remains low. Despite increasing literature regarding organisational-level ACP characteristics leading to success, there is a lack of data measuring the impact of these factors on ACD prevalence. METHODS: A prospective multi-centre, cross-sectional audit of health records among older Australians accessing general practices (GP), hospitals and residential aged care facilities (RACF) was undertaken to describe organisational and ACP-program characteristics across services, document ACD prevalence, and assess organisation-level predictors of ACD prevalence. Organisational-level data included general and ACP-program characteristics. Patient/resident data included demographics and presence of ACDs. RESULTS: One hundred organisations (GP = 15, hospitals = 27, RACFs = 58) participated, contributing data from 4187 patient/resident health records. Median prevalence of ACDs across organisations was 19.4%, (range = 0-100%). In adjusted models, organisational sector type was the strongest predictor of ACD prevalence, with higher rates in RACFs (unadjusted 28.7%, adjusted 20.6%) than hospitals (unadjusted 6.4%, adjusted 5.8%) or GPs (unadjusted 2.5%, adjusted 6.6%). RACFs in regional and rural/remote areas had higher prevalence than metropolitan organisations. Organisations supported by government funding and those that were Not For Profit had higher prevalence than those that were privately funded, and organisations with an ACP program that had been implemented at least 3 years before data collection had higher prevalence than those with either no program or a more recent program. CONCLUSIONS: The median ACD prevalence was low, with substantial variation across organisations. Sector type was the strongest predictor, being highest in RACFs. Low prevalence rates, overall and in particular sectors, have implications for improvements. Further research into organisational factors associated with ACP/ACD completion is required.


Assuntos
Planejamento Antecipado de Cuidados , Idoso , Austrália/epidemiologia , Estudos Transversais , Atenção à Saúde , Humanos , Estudos Prospectivos
2.
Med J Aust ; 215(3): 125-129, 2021 08 02.
Artigo em Inglês | MEDLINE | ID: mdl-34109641

RESUMO

OBJECTIVES: To investigate the perspectives of doctors involved with voluntary assisted dying in Victoria regarding the Voluntary Assisted Dying Act 2017 (Vic) and its operation. DESIGN, SETTING, PARTICIPANTS: Qualitative study; semi-structured interviews with 32 doctors who had participated in the voluntary assisted dying system during its first year of operation (commenced 19 June 2019). Doctors were interviewed during April-July 2020. RESULTS: Three major themes related to problems during the first year of operation of the Act were identified: the statutory prohibition of health professionals initiating discussions with their patients about voluntary assisted dying; the Department of Health and Human Services guidance requirement that all doctor-patient, doctor-pharmacist, and pharmacist-patient interactions be face-to-face; and aspects of implementation, including problems with the voluntary assisted dying online portal, obtaining documentary evidence to establish eligibility, and inadequate resourcing of the Statewide Pharmacy Service. CONCLUSIONS: Doctors reported only limited concerns about the Victorian voluntary assisted dying legislation, but have had some problems with its operation, including implications for the accessibility of voluntary assisted dying to eligible patients. While legislative change may resolve some of these concerns, most can be ameliorated by improving the processes and systems.


Assuntos
Definição da Elegibilidade/legislação & jurisprudência , Pessoal de Saúde/ética , Relações Médico-Paciente/ética , Médicos/psicologia , Suicídio Assistido/legislação & jurisprudência , Adulto , Idoso , Atitude do Pessoal de Saúde , Definição da Elegibilidade/ética , Feminino , Recursos em Saúde , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Assistência Farmacêutica/economia , Farmacêuticos/ética , Médicos/estatística & dados numéricos , Pesquisa Qualitativa , Vitória/epidemiologia
3.
Intern Med J ; 51(10): 1619-1628, 2021 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-34148272

RESUMO

BACKGROUND: In the Australian state of Victoria, specialist doctors are central to the operation of voluntary assisted dying (VAD). However, a broad range of clinicians may be involved in the care of patients requesting or using VAD. AIMS: To describe levels of support for and willingness to be involved in VAD and consider factors associated with clinician support for the VAD legislation and physicians' willingness to provide VAD in practice. METHODS: A multisite, cross-sectional survey of clinicians in seven Victorian hospitals. All clinicians were invited to complete an online survey measuring demographic characteristics, awareness of and support for the VAD legislation, willingness to participate in VAD related activities and reasons for willingness or unwillingness to participate in VAD. RESULTS: Of 5690 who opened the survey, 5159 (90.1%) were included in the final sample and 73% (n = 3768) supported the VAD legislation. The strongest predictor of support for the VAD legislation was clinical role. Forty percent (n = 238) of medical specialists indicated they would be willing to participate in either the VAD consulting or coordinating role. Doctors did not differ in willingness between high impact (44%) and low impact specialty (41%); however, doctors specialising in palliative care or geriatric medicine were significantly less willing to participate (27%). CONCLUSION: Approximately 73% of surveyed staff supported Victoria's VAD legislation. However, only a minority of medical specialists reported willingness to participate in VAD, suggesting potential access issues for patients requesting VAD in accordance with the legal requirements in Victoria.

4.
Artigo em Inglês | MEDLINE | ID: mdl-34092550

RESUMO

BACKGROUND: Assisted dying (AD) is increasingly becoming lawful internationally. While all AD models have oversight mechanisms, Victoria, Australia is rare in requiring formal approval before AD is permitted. Other jurisdictions are now enacting or implementing prospective approval models yet little is known about their operation. This paper reports the first empirical research internationally analysing the operation of a prospective approval model. METHODS: This qualitative study recruited doctors involved in providing lawful AD during the first year of the Victorian AD system. Recruitment occurred through the mandatory training doctors providing AD must undertake. Semistructured interviews were undertaken predominantly through Zoom conferencing, transcribed and thematically analysed. RESULTS: 32 doctors from diverse specialties (including general practice) and diverse AD experiences were interviewed. Six themes were identified: (1) The primary gatekeeping to AD in practice was by the administrative Secretariat of the oversight body, the Voluntary Assisted Dying Review Board, and not the government department who issues the final 'permit'; this may not have been intended by parliament. (2) The prospective oversight and approval process was bureaucratic and (3) the mandatory online system to manage AD was a barrier. (4) These factors caused unnecessary delays which (5) impeded AD for very sick patients. (6) However, this prospective process protected doctors and ensured system safety. CONCLUSIONS: Potential barriers to accessing AD posed by prospective approval should be evaluated carefully by jurisdictions implementing or considering such a model. Attention is needed not only to law but to system design and how AD is implemented in practice.

5.
Health Expect ; 24(4): 1312-1325, 2021 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-33932311

RESUMO

BACKGROUND: Advance care planning (ACP) conversations may result in preferences for medical care being documented. OBJECTIVE: To explore the uptake and quality of advance care directives (ACDs) among older Australians accessing health and aged care services, by overall ACP documentation prevalence, person-level predictors and ACD quality indicators. DESIGN AND SETTING: National multi-centre health record audit in general practices (GP), hospitals and residential aged care facilities (RACF). PARTICIPANTS: A total of 4187 people aged ≥65 years attending their GP (n = 676), admitted to hospital (n = 1122) or residing in a RACF (n = 2389). MAIN OUTCOME MEASURES: ACP documentation prevalence by setting and type including person-completed ACDs and non-ACD documents (completed by a health professional or someone else); person-level predictors and quality indicators of ACDs. RESULTS: Overall ACP documentation prevalence was 46.5% (29.2% weighted). ACD prevalence was 25.3% (14.2% weighted). Unweighted ACD prevalence was higher in RACFs (37.7%) than in hospitals (11.1%) and GPs (5.5%). 35.8% of ACP documentation was completed by a health professional (9.7% weighted), and 18.1% was completed by someone else (10.6% weighted). Having an ACD was positively associated with being female, older, having two or more medical conditions, receiving palliative care, being divorced/separated and being in a RACF. Only 73% of ACDs included full name, signature, document date and witnessing. CONCLUSIONS AND CONTRIBUTION: Low ACP documentation prevalence and a lack of accessible, person-completed and quality ACDs represent an important ACP implementation issue. Low prevalence is complicated by poor document quality and a higher prevalence of documents being completed by someone other than the person.

6.
Artigo em Inglês | MEDLINE | ID: mdl-33722813

RESUMO

OBJECTIVE: To describe the Australian adult public's knowledge and experiences regarding substitute decision-making for medical decisions and their preferences for obtaining information about the substitute decision-maker (SDM) role. METHODS: This is a national cross-sectional online survey of the Australian adult public. The survey examined participants' advance care planning (ACP) awareness and experience, SDM experiences and preferences for obtaining more information about SDM, and participant knowledge about SDM. RESULTS: Of 1586 people who opened the survey, 1120 (70.6%) were included in the final sample. 13% (n=142) of participants indicated they had acted as an SDM. A median score of two correct responses out of five showed low to moderate knowledge about the SDM role among all participants, with only 33% reporting awareness of SDM laws existing in Australia. While most (59%) participants ranked a health professional as their preferred source of obtaining information about supporting SDMs, few participants who had been an SDM (n=64, 45%) reported obtaining any support in making medical decisions. The median SDM knowledge scores for people who had discussed ACP (3.0 vs 2.0, U=1 45 222, z=6.910, p<0.001), documented their ACP preferences (3.0 vs 2.0, U=71 984, z=4.087, p<0.001) or acted in the SDM role (3.0 vs 2.0, U=56 353, z=-3.694, p<0.001) were significantly higher compared with those who had not. CONCLUSIONS: The Australian public may have low to moderate knowledge about the SDM role and access only minimal support when making challenging medical decisions.

7.
Artigo em Inglês | MEDLINE | ID: mdl-33658249

RESUMO

OBJECTIVES: To describe among individuals with dementia: (1) self-reported awareness of, and engagement in, advance care planning; (2) presence of advance care planning documentation in the health record and (3) concordance between self-reported completion of advance care planning and presence of documentation in the health record. METHODS: An Australian prospective multicentre audit and cross-sectional survey. Individuals diagnosed with dementia who were able to speak English and were judged by a healthcare provider as having decision-making capacity were recruited from self-selected hospitals, residential aged care facilities and general practices across Australia. RESULTS: Fifty-two people with dementia completed surveys and were included. Overall, 59.6% of participants had heard about advance care planning and 55.8% had discussed advance care planning with someone, most often a family member (48.1%). While 38.5% of participants had appointed a medical substitute decision maker, only 26.9% reported that they had written down their values and preferences for future care. Concordance between self-reported completion of advance care planning and presence of documentation in the health record was low (56.8%, κ=0.139; 57.7%, κ=0.053). CONCLUSION: Effective models that promote discussion, documentation and accessible storage of advance care planning documents for people with dementia are needed.

8.
Artigo em Inglês | MEDLINE | ID: mdl-33397661

RESUMO

OBJECTIVES: (i) Describe the prevalence and type of advance care directives (ACDs) and other advance care planning (ACP) documentation completed by persons with dementia, healthcare providers and others on behalf of a person with dementia; (ii) identify the personal and ACP programme characteristics associated with having ACP documentation in the health record; (iii) identify the personal and ACP programme characteristics associated with having a self-completed ACD. METHODS: A multicentre audit was undertaken in Australian hospitals, general practices and residential aged care facilities. Auditors extracted demographic and ACP data from the records of eligible patients. ACP programme characteristics were provided by a site representative. Logistic and multinomial regression were used respectively to examine the factors associated with completion of any ACP documentation, and self-completion of an ACD by persons with dementia. RESULTS: A total of 1388 people with dementia (33.2%) from 96 sites were included. Overall, 60.8% (n=844) had ACP documentation; 31.6% (n=438) had a self-completed ACD and 29.3% (n=406) had an ACP document completed by a health professional or someone else on their behalf. Older participants were more likely to have ACP documented. Multivariate analyses indicated the odds of having self-completed ACP documents, compared with no advance care plan or ACP completed by someone else, were significantly influenced by age, country of birth, setting and whether the site had ACP training, policies or guidelines. DISCUSSION: While 60% of people with dementia had some form of ACP documentation, only half of the cases in which ACP was documented included an ACD completed by the person themselves.

9.
Aust Health Rev ; 45(3): 317-327, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33472740

RESUMO

Objective Substitute decision makers (SDMs) can be required to make difficult health care decisions on behalf of individuals lacking decision-making capacity. Online resources may be helpful in preparing and supporting SDMs. This study systematically explored the frequency, content and usability of Australian online resources containing health care substitute decision-making content written for consumers. Methods In April 2019, Google searches were conducted to identify online resources containing health care substitute decision-making content for consumers. Analysis comprised mapping resource characteristics, including target audience (individual-specific, SDM-specific, mixed) and thematic analysis of content. Usability was assessed using the Patient Education Materials Assessment Tool (PEMAT). Results Of the 61 resources identified, the most frequent were webpages (57%), individual-specific (43%) and those produced by government organisations (31%). Only 15 resources (24%) were written for SDMs. Content themes identified were: defining the scope of the SDM role (93%); recommended traits or characteristics of SDMs (80%); instructions or principles regarding standards for decision making (75%); duties of SDMs (70%); and supports (46%), rights (16%), barriers (8%) and benefits (5%) for SDMs. The median (interquartile range) PEMAT scores (out of 100) were 66 (27) for understandability and 60 (55) for actionability. Conclusions SDMs have a vital role in making decisions for people lacking decision-making capacity. Online resources are a potential source of information and support for SDMs in Australia. This study identified key gaps in availability, content and usability of existing SDM resources, highlighting the need for the further development of such resources. We suggest that future resource development include SDMs in the design and evaluation processes. What is known about the topic? An aging population and a greater need for decisions to be made on behalf of others who lack capacity means that health care substitute decision-making is occurring more frequently. Appointing one or more SDMs may occur as part of the advance care planning process. However, being a healthcare SDM can be difficult and stressful. People frequently use the Internet to search for health-related information. What does this paper add? This paper systematically examined the frequency, content and usability of existing Australian online resources with substitute decision-making content written for a consumer audience in English, and identified key gaps in online resources available to support SDMs. What are the implications for practitioners? Although there is a need for resources written for SDMs, authors of online resources need to pay careful attention to the purpose, content and usability of their resource. Future resource development should include input from SDMs and involve them in evaluation to assess whether the resources meet target audience needs.


Assuntos
Planejamento Antecipado de Cuidados , Idoso , Austrália , Tomada de Decisões , Atenção à Saúde , Humanos
10.
J Geriatr Oncol ; 12(2): 274-281, 2021 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-32739354

RESUMO

BACKGROUND: Advance care planning (ACP) and completion advance care directives (ACDs) is recommended for patients with cancer. Documentation needs to be available at the point of care. OBJECTIVE(S): To describe the prevalence of ACDs in health records and the self-reported awareness of and engagement in ACP as reported by older Australians with cancer, and to examine the concordance between self-reported completion of and presence of documentation in participants' health records. DESIGN/SETTING/PARTICIPANTS: Prospective multi-center audit of health records, and a self-report survey of eligible participants in 51 Australian health and residential aged care services. The audit included 458 people aged ≥65 years with cancer. RESULTS: 30% had ≥ ACD located in their record. 218 people were eligible for survey completion; 97 (44% response rate) completed it. Of these, 81% had a preference to limit some/all treatments, 10% wanted to defer decision-making to someone else, and 9% wanted all treatments. Fifty-eight percent of survey completers reported having completed an ACP document. Concordance between documentation in the participant's record and self-report of completion was 61% (k = 0.269), which is only fair agreement. CONCLUSION(S): Whilst 30% of participants had at least one ACD in their record, 58% self-reported document completion, and concordance between self-reported completion and presence in records was only fair. This is significant given most people had a preference for some/all limitation of treatment. Further ACP implementation strategies are required. These include a systematic approach to embedding ACP into routine care, workforce education, increasing community awareness, and looking at e-health solutions to improve accessibility at the point of care.

11.
J Gerontol B Psychol Sci Soc Sci ; 76(1): 109-120, 2021 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-32803263

RESUMO

OBJECTIVES: This study explored associations between birth region, sociodemographic predictors, and advance care planning (ACP) uptake. METHODS: A prospective, multicenter, cross-sectional audit study of 100 sites across 8 Australian jurisdictions. ACP documentation was audited in the health records of people aged 65 years or older accessing general practice (GP), hospital, and long-term care facility (LTCF) settings. Advance care directives (ACDs) completed by the person ("person completed ACDs") and ACP documents completed by a health professional or other person ("health professional or someone else ACP") were counted. Hierarchical multilevel logistic regression assessed associations with birth region. RESULTS: From 4,187 audited records, 30.0% (1,152/3,839) were born outside Australia. "Person completed ACDs" were less common among those born outside Australia (21.9% vs 28.9%, X2 (1, N = 3,840) = 20.3, p < .001), while "health professional or someone else ACP" was more common among those born outside Australia (46.4% vs 34.8%, X2 (1, N = 3,840) = 45.5, p < .001). Strongest associations were found for those born in Southern Europe: "person completed ACD" (odds ratio [OR] = 0.56, 95% confidence interval [CI] = 0.36-0.88), and "health professional or someone else ACP" (OR = 1.41, 95% CI = 1.01-1.98). English-language proficiency and increased age significantly predicted both ACP outcomes. DISCUSSION: Region of birth is associated with the rate and type of ACP uptake for some older Australians. Approaches to ACP should facilitate access to interpreters and be sensitive to diverse preferences for individual and family involvement in ACP.


Assuntos
Planejamento Antecipado de Cuidados/estatística & dados numéricos , Emigrantes e Imigrantes/estatística & dados numéricos , Características de Residência/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Austrália/etnologia , Estudos Transversais , Diversidade Cultural , Feminino , Registros de Saúde Pessoal , Humanos , Masculino , Multilinguismo , Assistência Terminal
13.
Support Care Cancer ; 29(7): 3677-3688, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-33184712

RESUMO

PURPOSE: To explore advance care planning (ACP) awareness, experiences, and preferences of people with cancer and support people of someone with cancer, in Australia. METHODS: Descriptive analysis and independent group t tests were used to examine data from a national, online cross-sectional survey. RESULTS: Of 705 respondents (440 people with cancer, 265 support people), 48.5% of participants had heard of ACP prior to the survey and 65% had discussed their values or preferences with someone. Significantly more people aged under 65 years had discussed their preferences than their older counterparts. Most (93%) discussions occurred with family or friends, but only 3.7% occurred with a health professional. A total of 33% had documented their preferences, with support people, women, and people aged under 65 years significantly more likely to have signed a legal document appointing someone to make medical decisions on their behalf. Views varied about the preferred timing of ACP and end-of-life care discussions (38.3% when cancer is incurable compared to 20% at diagnosis). Only 3.0% did not want to discuss ACP at all. Topics discussed were significantly different based on cohort, gender, age group, treatment status, and region. CONCLUSION: Despite increasing community awareness of ACP, understanding remains low amongst cancer patients and support people, who generally rely on discussions with family and friends rather than health professionals. ACP should be introduced early across multiple interactions with health professionals, discuss a broad range of ACP relevant topics, and involve the cancer patient and their support person.


Assuntos
Planejamento Antecipado de Cuidados/tendências , Intervenção Baseada em Internet/estatística & dados numéricos , Neoplasias/terapia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Austrália , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto Jovem
14.
Community Ment Health J ; 57(1): 18-28, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-33058044

RESUMO

Advance statements represent a promising but relatively unexplored means to empower young people with first-episode psychosis to actively participate in their own mental health care. This qualitative study explored the use of advance statement's for young people with first-episode psychosis, as well as their carers and clinicians, and provided actionable feedback on how to better meet the needs and preferences of these key stakeholders and more effectively implement advance statements in clinical settings.

15.
Health Justice ; 8(1): 22, 2020 Sep 21.
Artigo em Inglês | MEDLINE | ID: mdl-32959163

RESUMO

BACKGROUND: Limited information is available describing advance care planning (ACP) within correctional facilities, despite its increasing relevance due to the ageing population in prisons and the high rates of complex medical comorbidities. In Western countries, self-determination with respect to making future medical decisions is a human right that prisoners do not lose when they are remanded into custody. ACP enables individuals to plan for their health and personal care so their values, beliefs and preferences are made known to inform future decision-making, for a time when they can no longer communicate their decisions. This paper examines the limited academic literature relating to ACP within prisons to identify barriers and facilitators that influence the uptake of ACP and advance care directive (ACD) documentation. Common themes related to ACP in a correctional setting were extracted and synthesised to produce a high-level analysis of barriers and facilitators influencing ACP uptake for prisoners within a correctional setting. RESULTS: Six articles met the selection criteria and reported on the experience of ACP and ACDs in prisons; five from the United States of America and one from Switzerland. Three dominant themes were identified, with related subthemes: system-level factors, attitudes and perceptions, and ACP knowledge and comprehension. Barriers to ACP and ACD implementation were more prominent in articles than facilitators. CONCLUSIONS: Limited academic literature regarding the implementation and experience of ACP in prisons is available. The dominance of barriers identified in studies highlights key challenges for improving ACP uptake in correctional settings. Further research is required to understand the barriers, enablers, and attitudes to ACP in prisons.

16.
Aust Health Rev ; 44(5): 799-805, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32943137

RESUMO

Objective The aim of this study was to describe timelines and challenges encountered in obtaining ethics and governance approvals for an Australian multicentre audit study involving 100 public (n=22) and private (n=78) sites from three health sectors and all eight Australian states and territories. Methods We determined and compared the processes, documentation and number of business days required to prepare applications and obtain research ethics and governance approvals. Results In total, the full ethics and governance process (calculated from the date the first application was started to the date the final approval was granted) took 203 business days (79% of the study timeline). Standard risk ethics applications (n=4) took a median of 17 business days (range 3-35 days) to prepare and 32 business days (range 17-67 days) to be approved; expedited ethics applications (n=4) took a median of 5 business days (range 1-20 days) to prepare and 10 business days (range 1-44 days) to be approved. Governance approvals (n=23) took a median of 27 business days (range 4-63 days) to prepare and 20 business days (range 4-61 days) to be approved. Challenges included the lack of a nationwide single-site ethical review process, the extensive time required to duplicate content across applications, variability in application requirements and submission systems, and contract negotiations. Conclusion Further improvements are needed to reduce duplication and increase the efficiency of Australian ethics and governance review processes. What is known about the topic? The process for obtaining ethics approval for multicentre research has been streamlined through the introduction of single-site ethics review. However, the process of gaining ethics and governance approvals for national multicentre research continues to be time-consuming, resource-intensive and duplicative. What does this paper add? This is the first study to examine the challenges of obtaining ethics and governance approvals for a non-interventional multicentre study involving three health sectors (hospital, aged care, general practice), both private and public services and all eight Australian jurisdictions. Previous examinations of Australian multicentre studies have considered only one health sector, focused on the public system and/or were not national in scope. What are the implications for practitioners? Researchers and funders need to be aware of the considerable time, resources and costs involved in gaining research ethics and governance approvals for multicentre studies and include this in budgets and study timelines. Policy makers and administrators of ethics and governance review processes must address barriers to conducting multicentre research in Australia.


Assuntos
Revisão Ética , Ética em Pesquisa , Idoso , Austrália , Hospitais , Humanos , Pesquisadores
17.
J Pain Symptom Manage ; 59(6): 1212-1222.e3, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-31899284

RESUMO

CONTEXT: Personal and interpersonal factors may be influential in a person's decision to engage in advance care planning (ACP), including completion of ACP documentation. OBJECTIVES: To conduct a cross-sectional survey of older adults accessing Australian general practices, hospitals, and residential aged care facilities, with the aim of describing associations between personal and interpersonal factors and self-reported ACP documentation completion. METHODS: Eligible participants included in a national health record audit were approached to complete a survey measuring demographic and health characteristics, preferences for care, worries about the future, and experiences talking with others about ACP and completing ACP documentation. RESULTS: Of 1082 people eligible to participate in the survey, 507 completed the survey (response rate = 47%; median age 82 years) and 54% (n = 272) reported having completed ACP documentation. Having ever discussed ACP with other people (anyone) or a doctor were both significant predictors of ACP documentation completion, whereas having previously spoken specifically to a partner about ACP, currently living with children compared to living alone, and being aged 55-69 versus 90-99 years were associated with reduced odds of ACP documentation completion. CONCLUSION: Approximately half the participants reported having completed ACP documentation. The strongest predictor of ACP documentation completion was having spoken to anyone about ACP followed by having spoken to a doctor about ACP. These findings suggest that discussions about ACP are an important part of the process of completing ACP documentation.


Assuntos
Planejamento Antecipado de Cuidados , Idoso , Idoso de 80 Anos ou mais , Austrália , Criança , Estudos Transversais , Documentação , Humanos , Autorrelato
18.
Gerontologist ; 60(4): e329-e346, 2020 05 15.
Artigo em Inglês | MEDLINE | ID: mdl-31141133

RESUMO

BACKGROUND AND OBJECTIVES: People with dementia become increasingly dependent on others for care as cognition declines. Decision making about placement of people with dementia into long-term institutional care can be emotionally complex. The objective of this review is to describe experiences and perspectives of people with dementia and their family caregivers in making decisions about institutional care placement. RESEARCH DESIGN AND METHODS: MEDLINE, Embase, PsycINFO, and CINAHL were searched from inception to August 2018. Thematic synthesis was used to analyze results. RESULTS: We included 42 studies involving 123 people with dementia and 705 family caregivers from 12 countries. We identified five themes: ensuring safety (avoiding injury due to frailty, protecting against dangerous behaviors, preventing aggressive encounters), reaching breaking point (insufferable burden of caregiving, needs exceeding capabilities, intensifying family conflict, loneliness and isolation, straining under additional responsibilities, making extreme personal sacrifices), vulnerability in lacking support (ill-prepared for crisis, unable to access professional expertise, unpredictable prognostic trajectory, uncertainty navigating health care services, pressured by limited placement opportunities, high cost of placement, resenting loss of autonomy), avoiding guilt of abandonment (sharing accountability, mitigating against disagreement and stigma, reluctance to relinquish caregiving, seeking approval), and seeking reassurance and validation (preserving personhood and former identity, empowerment through engagement, assurance of care quality, acceptance from other care residents). DISCUSSION AND IMPLICATIONS: People with dementia and family caregivers feel vulnerable, disempowered, and guilty in decision making about institutionalization. Person-centered communication and support strategies that foster confidence and reassurance are needed to assist people with dementia and caregivers to make decisions about placement into long-term institutional care settings.


Assuntos
Cuidadores/psicologia , Tomada de Decisões , Demência/psicologia , Institucionalização , Idoso , Idoso de 80 Anos ou mais , Comunicação , Família , Humanos , Assistência de Longa Duração , Pessoa de Meia-Idade , Pesquisa Qualitativa , Qualidade da Assistência à Saúde , Incerteza
19.
Aust Health Rev ; 44(3): 399-404, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31751211

RESUMO

Objective The aim of this study was to identify the challenges anticipated by clinical staff in two Melbourne health services in relation to the legalisation of voluntary assisted dying in Victoria, Australia. Methods A qualitative approach was used to investigate perceived challenges for clinicians. Data were collected after the law had passed but before the start date for voluntary assisted dying in Victoria. This work is part of a larger mixed-methods anonymous online survey about Victorian clinicians' views on voluntary assisted dying. Five open-ended questions were included in order to gather text data from a large number of clinicians in diverse roles. Participants included medical, nursing and allied health staff from two services, one a metropolitan tertiary referral health service (Service 1) and the other a major metropolitan health service (Service 2). The data were analysed thematically using qualitative description. Results In all, 1086 staff provided responses to one or more qualitative questions: 774 from Service 1 and 312 from Service 2. Clinicians anticipated a range of challenges, which included burdens for staff, such as emotional toll, workload and increased conflict with colleagues, patients and families. Challenges regarding organisational culture, the logistics of delivering voluntary assisted dying under the specific Victorian law and how voluntary assisted dying would fit within the hospital's overall work were also raised. Conclusions The legalisation of voluntary assisted dying is anticipated to create a range of challenges for all types of clinicians in the hospital setting. Clinicians identified challenges both at the individual and system levels. What is known about the topic? Voluntary assisted dying became legal in Victoria on 19 June 2019 under the Voluntary Assisted Dying Act 2017. However there has been little Victorian data to inform implementation. What does this paper add? Victorian hospital clinicians anticipate challenges at the individual and system levels, and across all clinical disciplines. These challenges include increased conflict, emotional burden and workload. Clinicians report concerns about organisational culture, the logistics of delivering voluntary assisted dying under the specific Victorian law and effects on hospitals' overall work. What are the implications for practitioners? Careful attention to the breadth of staff affected, alongside appropriate resourcing, will be needed to support clinicians in the context of this legislative change.


Assuntos
Atitude do Pessoal de Saúde , Pessoal de Saúde/psicologia , Suicídio Assistido/psicologia , Humanos , Cultura Organizacional , Suicídio Assistido/legislação & jurisprudência , Inquéritos e Questionários , Vitória
20.
BMJ Open ; 9(10): e032638, 2019 10 31.
Artigo em Inglês | MEDLINE | ID: mdl-31676659

RESUMO

OBJECTIVE: Advance care planning (ACP) assists people to identify their goals, values and treatment preferences for future care. Ideally, preferences are documented in an advance care directive (ACD) and used by doctors to guide medical decision-making should the patient subsequently lose their decision-making capacity. However, studies demonstrate that ACDs are not always adhered to by doctors in clinical practice. We aim to describe the attitudes and perspectives of doctors regarding ACD adherence and the utility of ACDs in clinical practice. DESIGN: Face-to-face semistructured interviews were conducted using three case-based vignettes to explore doctors' decision-making and attitudes towards ACDs. Transcripts were analysed using a thematic analysis. SETTING: Doctors from a variety of medical specialties and with varying experience levels were recruited from a large tertiary hospital in Melbourne, Australia. PARTICIPANTS: A total of 21 doctors were interviewed, 48% female (10/21). Most (19/21) reported having experience using ACDs. RESULTS: Four themes were identified: aligning with patient preferences (avoiding unwanted care, prioritising autonomy and anticipating family opposition), advocating best interests (defining futile care, relying on clinical judgement, rejecting unreasonable decisions and disregarding legal consequences), establishing validity (doubting rigour of the decision-making process, questioning patients' ability to understand treatment decisions, distrusting outdated preferences and seeking confirmation) and translating written preferences into practice (contextualising patient preferences, applying subjective terminology and prioritising emergency medical treatment). CONCLUSIONS: ACDs provide doctors with opportunities to align patient preferences with treatment and uphold patient autonomy. However, doctors experience decisional conflict when attempting to adhere to ACDs in practice, especially when they believe that adhering to the ACD is not in the patients' best interests, or if they doubt the validity of the ACD. Future ACP programmes should consider approaches to improve the validity and applicability of ACDs. In addition, there is a need for ethical and legal education to support doctors' knowledge and confidence in ACP and enacting ACDs.


Assuntos
Adesão a Diretivas Antecipadas , Atitude do Pessoal de Saúde , Tomada de Decisão Clínica , Médicos , Planejamento Antecipado de Cuidados , Diretivas Antecipadas , Austrália , Feminino , Humanos , Masculino
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