scholarly journals Family Understanding of Seriously-ill Patient Preferences for Family Involvement in Healthcare Decision Making

2011 ◽  
Vol 26 (8) ◽  
pp. 881-886 ◽  
Author(s):  
Rashmi K. Sharma ◽  
Mark T. Hughes ◽  
Marie T. Nolan ◽  
Carrie Tudor ◽  
Joan Kub ◽  
...  
2019 ◽  
Vol 34 (7) ◽  
pp. 1260-1260
Author(s):  
A Mejia ◽  
G D Smith ◽  
R E Curiel ◽  
W Barker ◽  
R Behar ◽  
...  

Abstract Objective Little is known regarding the values that patients with mild cognitive impairment (MCI) incorporate into healthcare decision-making or how culture may affect such values. Even if values overlap across cultures, cultural groups may emphasize the importance of specific values differently since values emanate, at least in part, from cultural and life-long learning. The aim of this study was to explore and compare values that older adults of different ethnicities and cognitive statuses incorporate in their medical decisions. Participants and Method Four focus groups were established by identifying older adults as, a) Hispanic or non-Hispanic, and with b) normal cognition or MCI. Participants were recruited from the 1Florida Alzheimer’s Disease Research Center. Focus groups were audio-recorded and transcribed using a professional transcription service. Results There were a total of 23 participants (Age: M = 70.9, SD = 6.4). MCI groups had briefer discussions (Time M = 44 minutes) than the normal cognition groups (Time M = 62 minutes). Qualitative analysis of discussions was used to explore the values identified across the focus groups. The MCI groups valued spirituality, doctor recommendations, and family involvement when facing medical decisions. Normal cognition groups valued the necessity of proactive involvement as healthcare consumers and the relationship between the quality of patient-clinician interaction and their health care related decisions. Cultural themes involving perceptions of gender and generational differences emerged from the Hispanic normal cognition group. Conclusions This study identified many determinants influencing the medical decision-making process of diverse older adults: including past experiences, family involvement, healthcare barriers, and cultural background. These results have the potential to impact patient-clinician discussions, decisions made by surrogates, and the development of decision aids with a broader range of relevant patient values.


2017 ◽  
Vol 34 (1) ◽  
pp. 105-110 ◽  
Author(s):  
Kevin Marsh ◽  
J. Jaime Caro ◽  
Erica Zaiser ◽  
James Heywood ◽  
Alaa Hamed

Objectives: Patient preferences should be a central consideration in healthcare decision making. However, stories of patients challenging regulatory and reimbursement decisions has led to questions on whether patient voices are being considered sufficiently during those decision making processes. This has led some to argue that it is necessary to quantify patient preferences before they can be adequately considered.Methods: This study considers the lessons from the use of multi-criteria decision analysis (MCDA) for efforts to quantify patient preferences. It defines MCDA and summarizes the benefits it can provide to decision makers, identifies examples of MCDAs that have involved patients, and summarizes good practice guidelines as they relate to quantifying patient preferences.Results: The guidance developed to support the use of MCDA in healthcare provide some useful considerations for the quantification of patient preferences, namely that researchers should give appropriate consideration to: the heterogeneity of patient preferences, and its relevance to decision makers; the cognitive challenges posed by different elicitation methods; and validity of the results they produce. Furthermore, it is important to consider how the relevance of these considerations varies with the decision being supported.Conclusions: The MCDA literature holds important lessons for how patient preferences should be quantified to support healthcare decision making.


2020 ◽  
Vol 12 (1) ◽  
pp. 27-36 ◽  
Author(s):  
Sumytra Menon ◽  
Vikki A. Entwistle ◽  
Alastair V. Campbell ◽  
Johannes J. M. van Delden

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 384-384
Author(s):  
Hyejin Kim ◽  
Molly Perkins ◽  
Thaddeus Pope ◽  
Patricia Comer ◽  
Mi-Kyung Song

Abstract ‘Unbefriended’ adults are those who lack decision-making capacity and have no surrogates or advance care plans. Little data exist on nursing homes (NHs)’ healthcare decision-making practices for unbefriended residents. This study aimed to describe NH staff’s perceptions of healthcare decision making on behalf of unbefriended residents. Sixty-six staff including administrators, physicians, nurses, and social workers from three NHs in one geographic area of Georgia, USA participated in a 31-item survey. Their responses were analyzed using descriptive statistics and conventional content analysis. Of 66 participants, eleven had been involved in healthcare decision-making for unbefriended residents. The most common decision was do-not-resuscitate orders. Decisions primarily were made by relying on the resident’s primary care physician and/or discussing within a facility interdisciplinary team. Key considerations in the decision-making process included “evidence that the resident would not have wanted further treatment” and the perception that “further treatment would not be in the resident’s best interest”. Compared with decision making for residents with surrogates, participants perceived decision making for unbefriended residents to be equally-more difficult. Key barriers to making decisions included uncertainty regarding what the resident would have wanted in the given situation and concerns regarding the ethically and legally right course of action. Facilitators (reported by 52 participants) included some information/knowledge about the resident, an understanding regarding decision-making-related law/policy, and facility-level support. The findings highlight the complexity and difficulty of healthcare decision making for unbefriended residents and suggest more discussions among all key stakeholders to develop practical strategies to support decision-making practices in NHs.


2021 ◽  
Author(s):  
Vivek C. Pandrangi ◽  
Nyssa Fox Farrell ◽  
Jess C. Mace ◽  
Kara Y. Detwiller ◽  
Timothy L. Smith ◽  
...  

2020 ◽  
Vol 32 (S1) ◽  
pp. 65-65
Author(s):  
Ana Saraiva Amaral ◽  
Rosa Marina Afonso ◽  
Mário R. Simões ◽  
Sandra Freitas

Mild cognitive impairment (MCI) and Alzheimer’s Disease (AD) prevalence is expected to continue to increase, due to the population ageing. MCI and AD may impact patients’ decision-making capacities, which should be assessed through the disease course. These medical conditions can affect the various areas of decision-making capacity in different ways. Decision-making capacity in healthcare is particularly relevant among this population. Elders often suffer from multimorbidity and are frequently asked to make healthcare decisions, which can vary from consenting a routine diagnostic procedure to decide receiving highly risk treatments.To assess this capacity in elders with MCI or AD, we developed the Healthcare Decision-Making Capacity Assessment Instrument (IACTD-CS - Instrumento de Avaliação da Capacidade de Tomada de Decisão em Cuidados de Saúde). This project is funded by Portuguese national funding agency for science, research and technology, FCT (SFRH/BD/139344/2018). IACTD-CS was developed based on Appelbaum and Grisso four abilities model, literature review and review of international assessment instruments. After IACTD-CS first version development, an exploratory study with focus groups was conducted. This study included focus groups with healthcare professionals and nursing homes’ professionals.The focus groups main goals were: 1) understand the participants perception regarding healthcare decision-making capacity, 2) distinguish relevant aspects of decision-making, 3) discuss the abilities and items included in IACTD-CS and 4) identify new aspects or items to be added to IACTD-CS. A content analysis of the focus groups results, with resource to MAXQDA, was conducted afterwards. This exploratory study allowed to identify professionals’ perceptions on healthcare decision-making and its results were a significant contribute to IACTD-CS development. The proposed communication aims to describe the methodology used and present the results of content analysis.


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