Making an Advance Research Directive: An Interview Study with Adults Aged 55 and Older with Interests in Dementia Research.

Many people with dementia are interested in taking part in research, including when they no longer have capacity to provide informed consent. Advance research directives (ARD) enable people to document their wishes about research participation prior to becoming decisionally incapacitated. However, there are few available ARD resources. This Australian interview study elicited the views of people aged 55 years and older about the content of an ARD form and guidance booklet and processes to support research planning. Participants (n = 25; 55 to 83 years) had interests in dementia research. All participants described the ARD materials as easy to understand, and all expressed willingness to take part in future research. Nearly half believed that an ARD should be legally enforceable, while others saw it as a nonbinding document to guide decisions about their participation in research. Close family members were preferred as proxy decision-makers. The ARD form and guidance booklet may be adapted for use elsewhere.

A Revised Approach to Advance Personal Planning: The Role of Theory in Achieving "The Good Result".

This article explores traditional views of advance care planning in the broader context of advance personal planning, which also accounts for legal and financial matters. Criticisms of existing processes are noted, while the significance of interprofessional collaboration is highlighted. Reframing the purpose of advance personal planning as planning for the rest of life, rather than the end-of-life, and adopting a more holistic perspective informed by theory may help individuals to view advance personal planning as a routine, preventative exercise that safeguards their autonomy and well-being. Both lawyers and healthcare providers have an important role to play in reframing the purpose of advance personal planning. This revised approach is underpinned by the unification of two separate theoretical lenses: Preventive Law Theory and Therapeutic Jurisprudence. This combination enhances our understanding of what it means for people to truly achieve "the good result" (Holtz 2017) when planning ahead for their future legal, financial, health, and personal interests. Preventive Law Theory encourages an ongoing, collaborative relationship between lawyers and their clients, or healthcare providers and their patients, while Therapeutic Jurisprudence ensures an ethical approach to advance personal planning that accounts for all aspects of the individual's well-being, including consideration of vulnerability, autonomy, and empowerment.

Advance planning for research participation: Time to translate this innovation into practice.

OBJECTIVES: Advance planning for research is a process that involves thinking about, discussing and expressing preferences for taking part in research during future periods of incapacity. The process may include making an advance research directive and naming trusted people to be involved in decisions about research participation. Advance research planning could help to overcome barriers to including people with dementia in research. To encourage innovation in this area, this article presents recommendations informed by a stakeholder workshop that brought together consumer representatives and representatives active in dementia, ageing and health-related research, policy-making, advocacy and service delivery in health and aged care. METHODS: An online workshop where 15 stakeholders shared perspectives and suggestions for implementing advance research planning, with a focus on research involving people with dementia. RESULTS: Raising awareness of advance research planning requires multi-faceted strategies. Training and resources are needed for researchers, ethics committees and organisations regarding this form of advance planning and the use of research directives. Like any form of advance planning, planning ahead for research must be a voluntary, informed and person-centred process. There is a lack of uniform legal rules on research involving people who lack the capacity to consent; however, advance research directives could, in principle, inform decisions about research participation. CONCLUSIONS: As a matter of law, policy and practice, people are encouraged to plan ahead in many areas of their life. Research planning has been relatively neglected, and the recommendations offered here aim to encourage innovation in research and implementation in this area.

Key Informant Perspectives on Barriers to Advance Personal Planning: Results from a Qualitative Interview Study.

Advance Care Planning (ACP) relates to the process of thinking about, discussing, and potentially documenting future wishes and preferences relating to personal and health matters. Existing literature has explored ACP from the perspective of health care professionals and older people. However, data exploring the broader process of Advance Personal Planning (APP), which also accounts for plans relating to legal and financial matters, are limited. This article reports on an interview study that explored barriers to APP engagement, factors influencing the quality and future use of instruments, and opportunities for improving APP processes for older adults from the perspectives of key informants working in the fields of law, health, and aged care. Data were coded in NVivo and analysed thematically. Opportunities for improvement include education, normalising conversations, integration into usual practice, and reform. Recommendations are made at professional, community, and structural levels, with the aim of improving APP outcomes for all involved.

A qualitative interview study of Australian physicians on defensive practice and low value care: "it's easier to talk about our fear of lawyers than to talk about our fear of looking bad in front of each other".

BACKGROUND: Defensive practice occurs when physicians provide services, such as tests, treatments and referrals, mainly to reduce their perceived legal or reputational risks, rather than to advance patient care. This behaviour is counter to physicians' ethical responsibilities, yet is widely reported in surveys of doctors in various countries. There is a lack of qualitative research on the drivers of defensive practice, which is needed to inform strategies to prevent this ethically problematic behaviour. METHODS: A qualitative interview study investigated the views and experiences of physicians in Australia on defensive practice and its contribution to low value care. Interviewees were recruited based on interest in medico-legal issues or experience in a health service involved in 'Choosing Wisely' initiatives. Semi-structured interviews averaged 60 min in length. Data were coded using the Theoretical Domains Framework, which encapsulates theories of behaviour and behaviour change. RESULTS: All participants (n = 17) perceived defensive practice as a problem and a contributor to low value care. Behavioural drivers of defensive practice spanned seven domains in the TDF: knowledge, focused on inadequate knowledge of the law and the risks of low value care; skills, emphasising patient communication and clinical decision-making skills; professional role and identity, particularly clinicians' perception of patient expectations and concern for their professional reputation; beliefs about consequences, especially perceptions of the beneficial and harmful consequences of defensive practice; environmental context and resources, including processes for handling patient complaints; social influences, focused on group norms that encourage or discourage defensive behaviour; and emotions, especially fear of missing a diagnosis. Overall, defensive practice is motivated by physicians' desire to avoid criticism or scrutiny from a range of sources, and censure from their professional peers can be a more potent driver than perceived legal consequences. CONCLUSIONS: The findings call for strengthening knowledge and skills, for example, to improve clinicians' understanding of the law and their awareness of the risks of low value care and using effective communication strategies with patients. Importantly, supportive cultures of practice and organisational environments are needed to create conditions in which clinicians feel confident in avoiding defensive practice and other forms of low value care.

Views of healthcare consumer representatives on defensive practice: 'We are your biggest advocate and supporter not the enemy'.

BACKGROUND: The patient-clinician interaction is a site at which defensive practice could occur, when clinicians provide tests, procedures and treatments mainly to reduce perceived legal risks, rather than to advance patient care. Defensive practice is a driver of low-value care and exposes patients to the risks of unnecessary interventions. To date, patient perspectives on defensive practice and its impacts on them are largely missing from the literature. This exploratory study conducted in Australia aimed to examine the views and experiences of healthcare consumer representatives in this under-examined area. METHODS: Semi-structured interviews were conducted with healthcare consumer representatives involved in healthcare consumer advocacy organisations in Australia. Data were transcribed and analysed thematically. RESULTS: Nine healthcare consumer representatives participated. Most had over 20 years of involvement and advocacy in healthcare, including personal experiences as a patient or carer and/or formal service roles on committees or complaint bodies for healthcare organisations. Participants uniformly viewed defensive practice as having a negative impact on the clinician-patient relationship. Themes identified the importance of fostering patient-clinician partnership, effective communication and informed decision-making. The themes support a shift from the concept of defensive practice to preventive practice in partnership, which focuses on the shared interests of patients and clinicians in achieving safe and high-value care. CONCLUSION: This Australian study offers healthcare consumers' perspectives on the impacts of defensive practice on patients. The findings highlight the features of clinician-patient partnership that will help to improve communication and decision-making, and prevent the defensive provision of low-value care. PATIENT OR PUBLIC CONTRIBUTION: Healthcare consumer representatives were involved as participants in this study.