Name

Residence

Affiliation

Title of the paper

Bryanna Moore

USA

The University of Texas Medical Branch

Weighed, Measured, and Found Wanting? The Use of Quality of Dying and Death Instruments in Health Research, Policy and Practice

Abstract

Over the past 20 years, there has been a surge of empirical work designed to assess the “quality of death and dying” (QODD) of patients. QODD instruments are typically surveys that ask family members, clinicians or, occasionally, patients, to identify the domains that are most important to them at the end of their life or rate someone’s dying experience against validated domains. What they suggest is that people like to have choice, the option to relieve avoidable pain, and to be accompanied at their time of their death by persons of their choosing. Researchers claim that QODD instruments provide a basis for: (1) comparing dying outcomes across settings and patient populations, (2) establishing the clinical or economic efficacy of different interventions at the end of a patient’s life, and (3) setting priorities that can be translated into policy and practice. The general idea behind the use of QODD instruments is that, by identifying bad deaths or dying experiences, we can aid quality improvement efforts in end-of-life care and help patients to die “a good death”. Between the medicalization of death, our aging population, and the increasingly pluralistic nature of the societies we live in, this is an issue that is of not only clinical but also social and political significance.

Striving to understand and improve the experiences of patients and caregivers at the end of someone’s life is a laudable goal. The end of someone’s life can be a defining moment for patients, families, caregivers, healthcare professionals and communities. However, there are important metaphysical, ethical, and practical challenges associated with the use of such instruments to guide policy and practice. Of note, many of the challenges QODD instruments face mirror the problems faced by quality-of-life instruments. While many of these difficulties are explicitly acknowledged in the existing literature on the QODD, approaches to evaluating the dying experiences of patients and caregivers have remained largely unchanged. My aims in this presentation are, firstly, to clarify the main problems associated with QODD instruments, and, secondly, explore whether these empirical instruments can and should be revised given these challenges. I explore whether there is a more constructive way to evaluate the dying experiences of patients, particularly patients and families who decline palliative care or reject conventional ideas of a good death. I argue that insights from philosophy, behavioral science and clinical ethics provide important insight into why it is so difficult to measure and evaluate dying experiences and hint at some promising ways to move forward.

Name

Residence

Affiliation

Title of the paper

Matthé Scholten

Netherlands and Germany

Institute for Medical Ethics and History of Medicine, Ruhr University Bochumn

Advance care planning in mental healthcare: Systematic reviews of the contents and service users’ attitudes towards psychiatric advance directives

Abstract

Objectives: Psychiatric advance directives (PADs) are documents that enable mental health service users to express their treatment preferences for future mental health crises. Completion rates for PADs remain low despite high rates of interest among service users and empirically confirmed benefits of their use. A systematic review of service users’ preferences regarding the content of PADs can be a valuable resource for clinicians and policy makers and help reduce barriers to PAD implementation. Consideration of the perspectives of service users on PADs and the factors that facilitate or hinder their creation and implementation can be helpful to increase the use and quality od PADs.

Methods: Two systematic reviews concordant with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines was conducted. The databases CINAHL, Cochrane, EMBASE, PsycINFO, Medline, PubMed, SCOPUS and Web of Science were searched up to July 2, 2021. The Mixed Methods Appraisal Tool (MMAT) was used to assess the methodological quality and the risk of bias of the included studies. Data were analyzed thematically, tabulated, and synthesized in a narrative fashion.

Results: The search yielded 4047 articles. In the first review (on the content of PADs), 42 articles were eligible for inclusion. Six themes emerged, most of which included subthemes: 1.) signs of crisis, 2.) general treatment approach, 3.) preferences regarding the treatment setting, 4.) treatment preferences, 5.) coercion and 6.) social instructions. In the second review (on service users’ attitudes toward PADs), 53 articles were included. The following categories were identified: general preferences regarding factors such as legal force and revocability; benefits of PADs on a personal, treatment-related and social level; challenges and barriers concerning the process of PAD creation and application; and possible and experienced facilitators of PAD creation.

Conclusions: The concern that PADs may be unclear or incompatible with practice standards was not confirmed. Service users generally include clear, comprehensible and clinically relevant information in their PADs, often providing underlying reasons. Users are highly interested in PADs and regard them as tools to improve their involvement in their care. They generally preferred legally binding PADs that can be revoked only when users have mental capacity. Barriers reported by service users were mainly related to the creation and application of PADs, and support in the creation of PADs was the most important facilitator identified. The involvement of mental health professionals in creating PADs appears essential to realize the benefits of PADs and to reduce barriers.