Supporting risky preferences

Caring by placing the person at the centre, by supporting their self-determination and by seeking wellbeing, always involves taking certain risks. Because risk is inherent to life and personal development.

When we care for people, it is common to have to respond to preferences or decisions of individuals that place their personal freedom in conflict with other values that we must also protect, such as health or safety. The pandemic caused by Covid-19 has clearly demonstrated this.

These situations generate great uncertainty in care teams and there is not always agreement on how to proceed. As family caregivers, as professionals, as service providers, we have an obligation to protect those who are in a highly vulnerable situation and to prevent harm. But we cannot ignore that we also have to protect other rights. This is when questions arise: should the aim be to eliminate all risks? is it possible? is it desirable? how? always? when? at what cost? what are the negative effects of restrictions? We move between the obligation of non-maleficence, while supporting autonomy and facilitating the well-being of the person. These are all principles that define good treatment in care.

The fears that these situations entail often lead us to total prohibition, to an unqualified "no" and to prioritising physical safety above all else, imposing limitations that may be unnecessary or excessive. And we cannot ignore the fact that measures restricting freedom are not harmless. There is ample evidence of this in the use of restraints. Decisions in care that seek only physical safety often have negative effects. Harm has to be seen in a broader assessment, emotional, social or moral harm can also amount to malicious treatment. The pandemic has unfortunately shown this to be the case.

In this line of thought, within the collaborative project that I am developing with Matia, pathways for progress in PCC, the professional teams of the centres identified this issue as one of the matters where it was necessary to generate greater reflection, delve deeper into existing knowledge and provide useful tools to approach these situations seriously, calmly and from a broad perspective.

This is the origin of this route that we now present "Supporting preferences that involve risks" with its materials, including a guide to orientate how to carry out a process of shared decisions. A route that has been enriched, moreover, with the learnings of these difficult years that have meant a significant setback in personalised attention in the centres. We believe that, precisely now, it may be particularly opportune to help reconsider certain practices and organisational decisions.

Cover of the publication: Preferential involving risks pathway

This route shares some considerations, firstly, to reflect on the need to find a balance between autonomy, security and well-being in care frameworks where different people live together. It is also committed to leading personalised processes of shared decision-making as the way forward, with the participation of people and their families, and offers tools for this purpose. In addition, it highlights some keys and ideas for moving towards fair organisations and a society that supports progress towards a "yes culture" in care, which is nothing more than truly personalised care with the participation of people in how their care and daily lives should be. 

Care speaks to us of unique individuals, diverse interpersonal relationships and unique and changing socio-cultural contexts.

This has an enormously positive side in that it is a privilege to approach and support other people's lives, and it enriches us, if we know how to see it, by presenting us with new challenges. But it also confronts us with unique, sometimes difficult and complex situations that require maturity, updating our knowledge, flexibility and skills to know how to manage our emotions. 

Reflecting, deliberating as a team and making the best possible decisions for each person and in each situation reduces uncertainty and makes us grow as individuals, professionals, teams and organisations.

On 27 October, from 6 p.m. onwards, these materials will be presented in a webinar to which I invite you to register, and in which we will continue to make progress in the dissemination of good practices applicable to good care.