The starting point is being open to negotiation. It is important that all stakeholders are open to this negotiation. If not, the process becomes a covert means to ‘force’ patients to conform. In Laura’s story, negotiation may involve Laura agreeing to move to a downstairs bedroom, as opposed to the community-nursing unit. During negotiation, David, others in the healthcare team, and Laura’s sister Ann may accept the degree of risk this entails. This approach is congruent with positive risk assessment, which acknowledges the role of risk in living fulfilled lives. Positive risk management seeks to identify risks and minimise those risks in ways that maximise the potential and priorities of the person involved (Morgan 2010). In this sense, healthcare professionals are engaged in positive risk assessment as opposed to risk avoidance. This is congruent with defining non-maleficence as avoiding unnecessary, as opposed to all, harm. Beauchamp and Childress (2013) explore the concept of harm and note that nonmaleficence obliges us to justify harmful actions. In this scenario, appealing to Laura’s preference to stay at home, and the associated impact on quality of life, could justify the possible harms that may arise in the absence of further supervision in a nursing home context. Harm could be reduced by use of a sensor mat that would alarm and alert Ann, should Laura leave her bed during the night. Respect for autonomy involves respecting the rights of others to make decisions on matters affecting them and have those decisions respected. This respect for autonomy may involve what Olsen (2003) refers to as the ‘ethical use of influence’ to encourage people to make healthier, safer choices. For Olsen, influence is an ongoing feature of patient-healthcare professional interaction. It involves a relational approach whereby every action of influence, despite its magnitude, is assessed for its ethical suitability. This assessment can occur through a process of self-reflection where the healthcare professional explores his or her actions and underlining motivations. David can respect Laura’s autonomy but also seek to influence her initial decision to sleep upstairs and prompt her to understand the risks involved and the consequences for her, and her sister.
Respect for the other story involves both patient and healthcare professional appreciating the other’s perspective. In Laura’s story, this involves David, and other professionals respecting the significance of Laura’s preference to remain in her own home. It also involves Laura understanding her sister’s predicament, as well as the concerns of healthcare professionals and their professional obligations to promote her well-being. Acceptance of personal responsibility is also a mutual task. David acknowledges his responsibility for Laura’s care and the level of support she requires, while Laura accepts personal responsibility for her health and well-being, in so far as her fluctuating capacity allows her to do so. Dialogical practice involves moving beyond a contractual account of the caring relationship, to working in ways that engage with personal narrative (Brody 2002) and promote a genuine sharing of language, knowledge and beliefs. In this sense, David would engage with Laura to understand her choices and associated motivations and seek ways in which they could be realised without over-compromising her safety.
A comparable staged approach to balancing respect for autonomy with professional accountability is found in recent guidance from the Health Information and Quality Authority in Ireland (HIQA 2016). The guidance draws on Autonomy as Lived (Greaney 2014), similar relational accounts of autonomy and positive risk assessment strategies to facilitate patient autonomy in an accountable way. Central to the guidance is A framework for good practice in promoting people’s autonomy when using health and social care services (See Fig. 7.2). The framework was developed in association with key stakeholders groups using action-learning methodology and therefore reflects the realities of everyday practice. The framework is compatible with a human rights approach to supported decision-making (UNCRPD 2006), with its starting point being respect for the legal and mental capacity of persons and their right to make decisions about matters that affect them. Avoidance of pre-judgement on autonomy is a core element of the framework as is respecting autonomy regardless of diagnosis. The framework also encourages person-centred communication and a balancing of rights, risks and responsibilities in accordance with positive risk assessment. The framework instils the importance of person-centred supports and the need to evaluate their efficiency. The guidance document (p. 59) includes a self-reflection checklist for health and social care providers to self-assess the extent to which they support autonomy in their daily activities. This will allow healthcare professionals to determine if they are engaged in the ‘ethical use of influence’ (Olsen 2003), as noted above, or more coercive strategies.
A framework for good practice in promoting people’s autonomy when using health and social care services (Reproduced from HIQA (Ireland) 2016)
Conclusion: Autonomy, Accountability and Laura
Laura’s story may reach a favourable conclusion through a relational understanding of autonomy that reflects the interconnected, contextual nature of our daily lives. An approach that values personal autonomy, person-centred communication and supportive practices can achieve a balance between Laura’s expressed preferences and David’s professional accountability for her care. A process of dialogue and negotiation could result in Laura agreeing to move downstairs. Dialogue and negotiation should not assign lower priority to her personal will and preference, but facilitate her personal choices to be explored with her in light of the risks they pose and their impact on others. The movement to a downstairs bedroom will not eliminate risks entirely. We recognise the importance of risk in human flourishing and appreciate that quality of life involves more than keeping people safe. A range of person-centred supports can minimise the risk of harm occurring. This approach may avoid the need for capacity assessments which provide a legal basis for action, but may also instil fear and mistrust if ‘more-than-ordinarily vulnerable’ (Sellman 2011) people are legally bound to submit to restrictive practices. We suggest that the approach presented here is more compatible with a human rights agenda and the ethos of the UN Convention as it seeks to engage with people in ways that are least restrictive. Through a process of real engagement, David can act as an advocate for Laura and comply with his professional obligations as a registered nurse.