Nurse, cand.cur., PhD-student
Sabrina Westergaard Jensen
Department of Anesthesiology and Intensive Care, Vejle, a part of Lillebaelt Hospital, University Hospital of Southern Denmark, Beriderbakken 4, DK - 7100 Vejle, Department of Anesthesiology and Intensive Care, Kolding, a part of Lillebaelt Hospital, Unive
| Projekt styring | ||
| Projekt status | Open | |
| Data indsamlingsdatoer | ||
| Start | 01.06.2024 | |
| Slut | 31.05.2027 | |
The Impact of Public Information on Older Citizens' Initiatives Regarding End-of-Life Preferences: An Intervention Study
Short summary
Advances in medical treatments prolong life, even for those with incurable diseases, creating complex needs in the final stages. People with life-threatening illnesses need timely discussions about advance care planning, but these often occur too late. This project examines how public education affects older citizens' knowledge and decisions on end-of-life care. Using presentations, surveys, and interviews, it evaluates the impact of information and aims to enhance patient autonomy.
Rationale
Advances in medical treatments often make it possible to extend life, leading to a growing older population (1, 2). More people are now living longer with incurable illnesses, and they face complex needs in the later stages of life (3). It is increasingly recognized that palliative care is essential for all patients with incurable diseases, not only cancer patients (3). Patients with other life-threatening conditions than cancer also experience complex symptoms and end-of-life needs (4) that require individualized palliative care plans as well (3). Advance Care Planning (ACP) enables patients to express their preferences regarding care and treatment at the end-of-life, in collaboration with healthcare professionals and, if preferred, family members. The purpose of ACP is to ensure that care decisions reflect the patient's values and wishes (5) related to life-prolonging treatment, pain management, resuscitation, and other aspects crucial to ensuring the quality of life in the end-of-life. ACP also provides healthcare professionals and family members with a clearer understanding of how to support the patient, ensuring that their wishes are honored, even if the patient cannot communicate them directly. ACP can lead to less aggressive treatment plans, fewer attempts at resuscitation, and earlier palliative care and hospice referrals (6). As a result, patients often experience increased satisfaction with their care and improved quality of life (7). Many patients with serious illnesses express a wish to discuss their end-of-life preferences, including the extent of treatment they would prefer, with a physician (8). Unfortunately, these conversations often occur late, near the end of life (9), when decisions about treatments such as chemotherapy have already been made (10). Healthcare professionals are facing challenges in initiating these conversations with patients due to a focus on clinical parameters, a lack of communication skills, or a lack of confidence in assessing patients' conditions (11). The delay in conversations and the professionals' challenges can leave patients unaware that life-prolonging treatments are not curative (12). The absence of timely ACP leaves the patients without the information they need to make well-considered decisions about their end-of-life care. Increasing public knowledge about end-of-life care options might contribute to patients' autonomy and quality of life, and help them initiate and engage in conversations about their preferences for end-of-life care. Research supports the idea that education through workshops and presentations can encourage older citizens to consider and discuss their end-of-life preferences (13). Aim The purpose of this study is to assess how a public information presentation on ACP influences older citizens' knowledge and actions in expressing their end-of-life preferences.
Description of the cohort
A minimum of 40 venues, including libraries, senior clubs, patient associations, and parish councils in the Region of Southern Denmark and the Central Denmark Region, will be offered the above-mentioned presentation free of charge. The participants are expected to be older citizens from the local community near the presentation venue, potentially accompanied by their relatives. The presentation is open to all, and individuals aged 18 and above are eligible for inclusion. However, the primary target group for the presentation is citizens aged 60 and above.
Data and biological material
4.1 Study Design The project is a multi-method intervention study inspired by the participatory design method and community interventions (21). The intervention consists of an oral presentation with PowerPoint slides, addressing topics such as advance directives, power of attorney for future healthcare decisions, patient rights, the implications of resuscitation efforts, ethics, palliative care options, and dilemmas concerning euthanasia. The presentation is developed and pilot-tested through two workshops in collaboration with a user panel, comprising patients, relatives, and clinicians. The intervention will be evaluated through a combined quantitative and qualitative longitudinal questionnaire survey and an interview study. Questionnaires The questionnaires are based on validated instruments from an English community intervention study (13). To ensure relevance and quality in a Danish setting the user panel was involved in developing the questionnaires and interview guide, contributing to defining areas to be covered and testing the wording and response categories. Additionally, the questionnaires were pilot-tested among 30 older citizens to ensure usability and comprehensibility. To assess changes in participants' reflections and initiatives on ACP, the survey includes three questionnaires comprising 39 questions. The first questionnaire is administered to participants before the presentation, and it contains 20 questions assessing their knowledge and considerations on ACP, comfort in discussing personal wishes, and their engagement in conversations about others' wishes. The second questionnaire is distributed immediately after the presentation and it consists of 12 questions evaluating the relevance of the presentation, whether it provided new knowledge, and whether it encouraged reflections to ACP. The final follow-up questionnaire is sent to participants three months after the presentation. It includes seven questions aimed at determining whether the participants have taken any initiatives related to ACP since attending the presentation.