“What Bothers Me Most Is the Disparity between the Choices that People Have or Don’t Have”: A Qualitative Study on the Health Systems Responsiveness to Implementing the Assisted Decision-Making (Capacity) Act in Ireland

Abstract

Objective: The Assisted Decision-Making (ADM) (Capacity) Act was enacted in 2015 in Ireland and will be commenced in 2021. This paper is focused on this pre-implementation stage within the acute setting and uses a health systems responsiveness framework. Methods: We conducted face-to-face interviews using a critical incident technique. We interviewed older people including those with a diagnosis of dementia (n = 8), family carers (n = 5) and health and social care professionals (HSCPs) working in the acute setting (n = 26). Results: The interviewees reflected upon a healthcare system that is currently under significant pressures. HSCPs are doing their best, but they are often halted from delivering on the will and preference of their patients. Many older people and family carers feel that they must be very assertive to have their preferences considered. All expressed concern about the strain on the healthcare system. There are significant environmental barriers that are hindering ADM practice. Conclusions: The commencement of ADM provides an opportunity to redefine the provision, practices, and priorities of healthcare in Ireland to enable improved patient-centred care. To facilitate implementation of ADM, it is therefore critical to identify and provide adequate resources and work towards solutions to ensure a seamless commencement of the legislation.

New Ways of Working? A Rapid Exploration of Emerging Evidence Regarding the Care of Older People during COVID19

“…We used descriptive statistics to describe the sample and thematic analysis for the resulting qualitative data set using NVivo nodes. Thematic analysis is a process of identifying patterns or themes within qualitative data [31]. Using the Twitter advanced search option thousands of tweets were retrieved which mentioned 'news ways of working', covering areas such as education, health, work, family and personal tweets (supplementary file 1- Table S1).…”

Discordance and concordance on perception of quality care at end of life between older patients, caregivers and clinicians: a scoping review

“…While intensive care clinicians may follow consensusbased guidelines on withholding or withdrawing life-sustaining treatments to enable optimal end-of-life care quality [14], families face the dilemma of having to decide on, or agree with, clinicians suspending treatment for older patients to prevent harm or prolonged suffering. Making these distressing judgments about whether and when to discontinue active treatments has moral, religious and legal implications [15][16][17]. Consequently, disagreements on perceived appropriateness of quality of end-of-life care provided in the last months of life are commonly reported [18,19].…”

(In)Visible illness: A photovoice study of the lived experience of self-managing rheumatoid arthritis

“…At the individual patient level, there has been an acknowledgement that patients should be involved in decisions about their treatment to ensure better adherence to treatment resulting in improved outcome [ 59 ]. However, how patients can be assisted to be meaningfully involved in the decision-making process is less straightforward [ 60 ]. The aim of this paper is to understand how individuals (self-)manage life with rheumatoid arthritis through their involvement in visual and narrative means.…”