RESUMEN
Objectives: Advance care planning (ACP) is a way of documenting preferences in case of a change or decline in health via verbal discussion and may include a written document. ACP relates not only to treatment preferences but to all aspects of future care such as place of death, plans for dependents and spiritual beliefs. Research has shown that ACP can have a positive impact but needs further understanding to enhance communication and increase uptake. This article focusses on the importance and intricacy of interactions and why a preference-based approach may be beneficial for the future. Methods: This article reports two separate, but related, pieces of qualitative research. First, focus groups to evaluate perspectives of healthcare professionals (HCPs) following their attendance at a North Wales ACP training workshop. The second study comprised interviews exploring the views of patients, those close to them and HCPs regarding ACP. Results: ACP interactions are complex and intricate. There is an association with end of life rather than changes in health among patients and HCPs often view discussions as akin to 'breaking bad news'. Good communication between patients, loved ones and HCPs is essential to reduce distress and ensure preferences are understood. Trust between patients and HCPs is of high importance and often a patient will have a preferred HCP who they feel comfortable discussing ACP with. Conclusion: A preference-based approach to ACP has potential to widen participation in ACP, relieve anxiety and ease burden for patients and carers. Further research is needed to identify ways to increase inclusivity.
RESUMEN
BACKGROUND: Noisy breathing is common at the end of life. Management of noisy breathing aims to reduce the noise via repositioning the person, suctioning the person's airways and using antimuscarinic drugs. Dying people are generally thought not to be distressed by noisy breathing at the end of life, but the noise may distress others. There is doubt on whether antimuscarinic drugs are any more effective than a placebo for noisy breathing. However, antimuscarinics are still commonly administered to people at the end of life. AIM: To illuminate reasons behind decision making and noisy breathing at the end of life. METHODS: Semi-structured interviews and 'self-recorded brief accounts' with healthcare professionals. FINDINGS: Noisy breathing at the end of life is viewed as both a natural and a medical phenomenon. However, while most participants in the interviews thought that antimuscarinics were uneffective, the prescription and administration of antimuscarinics were embedded within professional culture. CONCLUSION: Managing noisy breathing is a complex issue that incorporates natural and medical viewpoints and has a long-standing culture of practice. Research should aim to determine best practice and reduce a person's distress at the end of life.
