CX24-00028

Assessment of needs in the implementation of end-of-life public policies in Spain

Proposal summary

In Spain, there are no comprehensive studies addressing the various end-of-life practices, quantifying their prevalence and detailing the conditions under which they are carried out. Most research conducted to date has focused on specific types of practices, such as sedation, or on particular clinical settings, such as palliative care units, and has generally been limited to a specific territory or autonomous community. Furthermore, these studies have limitations regarding their representativeness and completeness.

Consequently, this project aims to quantify the incidence and analyse the characteristics of end-of-life practices, while also exploring the perceptions and knowledge of the general public and healthcare professionals regarding current regulations, including Organic Law 3/2021 on the Regulation of Euthanasia (LORE), and its implementation. The empirical information collected will make it possible to assess healthcare professionals’ compliance with and adherence to good practice guidelines and to formulate recommendations on science communication and health policies.

Objective

The overall objective is to monitor and evaluate end-of-life practices in Spain from a bioethical perspective in order to determine the extent to which end-of-life policies and ethical recommendations are being followed. To this end, three specific objectives (SOs) will be pursued:

SO1: To examine the incidence of and circumstances in which end-of-life practices are carried out in Spain, taking into account the current regulatory framework, comprising LORE and regional regulations concerning rights and guarantees of dignity in the dying process.

SO2: To explore the knowledge and perceptions of Spanish society regarding the quality of dying and end-of-life clinical care.

SO3: To formulate recommendations based on empirical evidence for the relevant authorities, particularly the Ministry of Health, identifying training needs and public and scientific communication strategies.

Methodology

To address these objectives, a combination of internationally recognised quantitative research methods in the fields of public health, social epidemiology and the social sciences will be used, together with bioethical and public policy analysis methodologies. These methods include a review of the clinical and bioethical literature, sociological surveys of the general public and healthcare professionals, descriptive and inferential analyses, and the interpretation of findings from a bioethical perspective.

The project will include two empirical studies:

• Study of death certificates and questionnaires administered to healthcare professionals.
• Study of public perceptions and knowledge.

Expected impact

This project will generate epidemiological evidence on the incidence of end-of-life practices and on public knowledge of and attitudes towards the clinical processes preceding death. It will also make it possible to identify clinical needs, implement improvements, strengthen the quality of care and increase public trust in health policies through the systematic empirical monitoring of end-of-life practices.

The knowledge generated will help ensure that academic and public debates concerning end-of-life issues are grounded in solid epistemic foundations. In this way, scientific evidence will be produced regarding the incidence, conditions of access and safety of the implementation of medical assistance in dying.

Funding

Conecta Call – 4th edition (2024)

Promoting organisations

The project will be conducted through a collaboration between the University of Granada (UGR), the End-of-Life Research Network (RedEOL) and the Ministry of Health.