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Martins GH, Eler K, Albuquerque A, Nunes R. Adolescents' healthcare decisional capacity in the clinical context: a theoretical study and model. J Pediatr (Rio J) 2025; 101:150-157. [PMID: 39245238 PMCID: PMC11889686 DOI: 10.1016/j.jped.2024.08.004] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/07/2024] [Revised: 07/18/2024] [Accepted: 08/12/2024] [Indexed: 09/10/2024] Open
Abstract
OBJECTIVE To provide a theoretical study and model for the bioethical foundations of the factors that influence adolescents' healthcare decisional capacity. SOURCES Materials from diverse sources, including indexed articles in recognized databases and official government documents, were examined for a purposefully selected sample. The research consisted of two stages: selection of documents and reflective thematic analysis, followed by the preparation of a report. The analysis adopted a phenomenological stance and a reflective view compatible with human rights. To reduce bias and ensure the robustness of the results, measures such as data triangulation were employed. Ethical measures were taken to ensure data integrity, including considerations of anonymity and conflicts of interest in the selected studies. SUMMARY OF THE FINDINGS It was possible to list intrinsic and extrinsic factors of the adolescent patient that influence their decisional capacity regarding health. A theoretical model was developed to discuss these factors for evaluation by means of an infographic. CONCLUSIONS It seems clear that the evaluation of healthcare decisional capacity of adolescents must position itself ethically regarding the tension between the moral duty to respect the self-determination of the able subject and the need to protect adolescents decidedly unable to make a specific health decision at a given time.
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Affiliation(s)
| | - Kalline Eler
- Federal University of Juiz de Fora, Juiz de Fora, MG, Brazil
| | | | - Rui Nunes
- Faculty of Medicine, University of Porto, Porto, Portugal
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2
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Jorem J, Førde R, Husum TL, Dahlberg J, Pedersen R. Impact of introducing a capacity-based mental health law in Norway: qualitative exploration of multi-stakeholder perspectives. BJPsych Open 2025; 11:e35. [PMID: 39995344 DOI: 10.1192/bjo.2024.810] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/26/2025] Open
Abstract
BACKGROUND Decision-making capacity (DMC) is key to capacity-based mental health laws. In 2017, Norway introduced a lack of DMC as an additional criterion for involuntary care and treatment to strengthen patient autonomy and reduce involuntary care. Health registry data reveal an initial reduction followed by rising involuntary care and treatment rates post-2017. Despite jurisdictions moving towards capacity-based mental health laws, little is known about their impact. AIMS To explore the impact of introducing a capacity-based mental health law governing involuntary care and treatment. METHOD Semi-structured interviews and focus groups were conducted in 2018 with 60 purposively sampled stakeholders, including patients, families, health professionals and lawyers. Of these, 26 participated in individual follow-up interviews in 2022-23. The transcribed interviews were thematically analysed following Braun and Clarke. RESULTS Four themes emerged: (a) increased awareness of patient autonomy and improved patient involvement; (b) altered thresholds for involuntary admission and discharge and more challenging to help certain patient groups; (c) more responsibility for primary health services; and (d) increased family responsibility but unchanged involvement by health services. CONCLUSIONS Introducing a capacity-based mental health law appears to raise awareness of patient autonomy, but its impact depends on an interplay of complex health, social and legal systems. Post-2017 changes, including rising involuntary care and treatment rates, higher thresholds for admissions and increased pressure on primary health services and families, may be influenced by several factors. These include implementation of decision-making capacity, legal interpretations, formal measures for care of non-resistant incompetent individuals, reduced in-patient bed availability, inadequate voluntary treatment options and societal developments. Further research is needed to better understand these changes and their causes.
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Affiliation(s)
- Jacob Jorem
- Institute of Health and Society, University of Oslo, Oslo, Norway; Department of Health Care Policy, Harvard Medical School, Boston, USA; and Department of Health Policy and Management, Columbia University Mailman School of Public Health, New York, USA
| | - Reidun Førde
- Institute of Health and Society, University of Oslo, Oslo, Norway
| | | | - Jørgen Dahlberg
- Institute of Health and Society, University of Oslo, Oslo, Norway
| | - Reidar Pedersen
- Institute of Health and Society, University of Oslo, Oslo, Norway
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Tunzi M, Day PG, Satin DJ. It's a spiral staircase, not just two steps: An iterative approach to assessing patient capacity for medical decision-making. PATIENT EDUCATION AND COUNSELING 2024; 127:108362. [PMID: 38981404 DOI: 10.1016/j.pec.2024.108362] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 01/10/2024] [Revised: 06/14/2024] [Accepted: 06/24/2024] [Indexed: 07/11/2024]
Abstract
The assessment of medical decision-making capacity as part of the process of clinical informed consent has been considered a bioethical housekeeping matter for decades. Yet in practice, the reality bears little resemblance to what is described in the medical literature and professed in medical education. Most literature on informed consent refers to medical decision-making capacity as a precondition to the consent process. That is, a clinician must first determine if a patient has capacity, and only then may the clinician engage with the patient for the rest of informed consent. The problem with this two-step approach is that it makes no sense in actual practice. We see the assessment of medical decision-making capacity within the process of informed consent as a spiral staircase, not just two steps, requiring clinicians to keep circling up and around, making progress, until they get to where they need to be: 1. Clinicians start with a general presumption of capacity for most adults, sometimes having a provisional appraisal of capacity based on prior patient contact. 2. Then, they begin performing informed consent for the current situation and intervention options. 3. Next, they must reassess capacity during this process. 4. After that, they continue with informed consent. 5. If capacity is not yet clear, they repeat 1-4.
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Affiliation(s)
- Marc Tunzi
- Family Medicine Residency, Natividad Medical Center, 1441 Constitution Boulevard, Salinas, CA 93906, USA; Department of Family and Community Medicine, University of California, San Francisco, San Francisco, CA, USA.
| | - Philip G Day
- Department of Family Medicine and Community Health, University of Massachusetts Medical School, Worcester, MA, USA.
| | - David J Satin
- Department of Family Medicine and Community Health, Affiliate Faculty, Center for Bioethics, University of Minnesota Medical School, Minneapolis, MN, USA.
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Mendez Colmenares A, Thomas ML, Anderson C, Arciniegas DB, Calhoun V, Choi IY, Kramer AF, Li K, Lee J, Lee P, Burzynska AZ. Testing the structural disconnection hypothesis: Myelin content correlates with memory in healthy aging. Neurobiol Aging 2024; 141:21-33. [PMID: 38810596 PMCID: PMC11290458 DOI: 10.1016/j.neurobiolaging.2024.05.013] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/12/2024] [Revised: 05/07/2024] [Accepted: 05/21/2024] [Indexed: 05/31/2024]
Abstract
INTRODUCTION The "structural disconnection" hypothesis of cognitive aging suggests that deterioration of white matter (WM), especially myelin, results in cognitive decline, yet in vivo evidence is inconclusive. METHODS We examined age differences in WM microstructure using Myelin Water Imaging and Diffusion Tensor Imaging in 141 healthy participants (age 20-79). We used the Virginia Cognitive Aging Project and the NIH Toolbox® to generate composites for memory, processing speed, and executive function. RESULTS Voxel-wise analyses showed that lower myelin water fraction (MWF), predominantly in prefrontal WM, genu of the corpus callosum, and posterior limb of the internal capsule was associated with reduced memory performance after controlling for age, sex, and education. In structural equation modeling, MWF in the prefrontal white matter and genu of the corpus callosum significantly mediated the effect of age on memory, whereas fractional anisotropy (FA) did not. DISCUSSION Our findings support the disconnection hypothesis, showing that myelin decline contributes to age-related memory loss and opens avenues for interventions targeting myelin health.
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Affiliation(s)
- Andrea Mendez Colmenares
- The BRAiN lab, Department of Human Development and Family Studies/Molecular, Cellular and Integrative Neurosciences, Colorado State University, Behavioral Sciences Building, 303, 410 W Pitkin St, Fort Collins, CO 80523, USA
| | - Michael L Thomas
- Department of Psychology, Colorado State University, Behavioral Sciences Building, 303, 410 W Pitkin, St, Fort Collins, CO 80523, USA
| | - Charles Anderson
- Department of Computer Science, Colorado State University, 456 University Ave #444, Fort Collins, CO 80521, USA
| | - David B Arciniegas
- Marcus Institute for Brain Health, University of Colorado Anschutz Medical Campus, 12348 E Montview Blvd, Aurora, CO 80045, USA
| | - Vince Calhoun
- Tri-institutional Center for Translational Research in Neuroimaging and Data Science (TReNDS), Georgia State, Georgia Tech, Emory, 55 Park Pl NE, Atlanta, GA 30303, USA
| | - In-Young Choi
- Department of Neurology, Department of Radiology, Hoglund Biomedical Imaging Center, University of Kansas Medical Center, 3805 Eaton St, Kansas City, KS 66103, USA
| | - Arthur F Kramer
- Beckman Institute for Advanced Science and Technology at the University of Illinois, 405 N Mathews Ave, Urbana, IL 61801, USA; Center for Cognitive & Brain Health, Northeastern University, Address: 360 Huntington Ave, Boston, MA 02115, USA
| | - Kaigang Li
- Department of Health and Exercise Science, Colorado State University, 951 W Plum St, Fort Collins, CO 80521, USA
| | - Jongho Lee
- Department of Electrical and Computer Engineering, Seoul National University, 232 Gongneung-ro, Nowon-gu, Seoul 01811, South Korea
| | - Phil Lee
- Department of Radiology, Hoglund Biomedical Imaging Center, University of Kansas Medical Center, 3805 Eaton St, Kansas City, KS 66103, USA
| | - Agnieszka Z Burzynska
- The BRAiN lab, Department of Human Development and Family Studies/Molecular, Cellular and Integrative Neurosciences, Colorado State University, Behavioral Sciences Building, 303, 410 W Pitkin St, Fort Collins, CO 80523, USA.
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Ravindranath O, Perica MI, Parr AC, Ojha A, McKeon SD, Montano G, Ullendorff N, Luna B, Edmiston EK. Adolescent neurocognitive development and decision-making abilities regarding gender-affirming care. Dev Cogn Neurosci 2024; 67:101351. [PMID: 38383174 PMCID: PMC11247355 DOI: 10.1016/j.dcn.2024.101351] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/17/2023] [Revised: 01/10/2024] [Accepted: 01/26/2024] [Indexed: 02/23/2024] Open
Abstract
Recently, politicians and legislative bodies have cited neurodevelopmental literature to argue that brain immaturity undermines decision-making regarding gender-affirming care (GAC) in youth. Here, we review this literature as it applies to adolescents' ability to make decisions regarding GAC. The research shows that while adolescence is a time of peak risk-taking behavior that may lead to impulsive decisions, neurocognitive systems supporting adult-level decisions are available given deliberative processes that minimize influence of short-term rewards and peers. Since GAC decisions occur over an extended period and with support from adult caregivers and clinicians, adolescents can engage adult-level decision-making in this context. We also weigh the benefits of providing GAC access during adolescence and consider the significant costs of blocking or delaying GAC. Transgender and non-binary (TNB) adolescents face significant mental health challenges, many of which are mitigated by GAC access. Further, initiating the GAC process during adolescence, which we define as beginning at pubertal onset, leads to better long-term mental health outcomes than waiting until adulthood. Taken together, existing research indicates that many adolescents can make informed decisions regarding gender-affirming care, and that this care is critical for the well-being of TNB youth. We highlight relevant considerations for policy makers, researchers, and clinicians.
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Affiliation(s)
- Orma Ravindranath
- Department of Psychology, University of Pittsburgh, Pittsburgh, PA, USA; Center for Neural Basis of Cognition, University of Pittsburgh, Pittsburgh, PA, USA.
| | - Maria I Perica
- Department of Psychology, University of Pittsburgh, Pittsburgh, PA, USA
| | - Ashley C Parr
- Center for Neural Basis of Cognition, University of Pittsburgh, Pittsburgh, PA, USA; Department of Psychiatry, University of Pittsburgh, Pittsburgh, PA, USA
| | - Amar Ojha
- Center for Neural Basis of Cognition, University of Pittsburgh, Pittsburgh, PA, USA; Center for Neuroscience, University of Pittsburgh, Pittsburgh, PA, USA
| | - Shane D McKeon
- Center for Neural Basis of Cognition, University of Pittsburgh, Pittsburgh, PA, USA; Department of Bioengineering, University of Pittsburgh, Pittsburgh, PA, USA
| | - Gerald Montano
- Division of Adolescent and Young Adult Medicine, UPMC Children's Hospital of Pittsburgh, Pittsburgh, PA, USA
| | - Naomi Ullendorff
- Division of Adolescent and Young Adult Medicine, UPMC Children's Hospital of Pittsburgh, Pittsburgh, PA, USA
| | - Beatriz Luna
- Department of Psychology, University of Pittsburgh, Pittsburgh, PA, USA; Center for Neural Basis of Cognition, University of Pittsburgh, Pittsburgh, PA, USA; Department of Psychiatry, University of Pittsburgh, Pittsburgh, PA, USA; Center for Neuroscience, University of Pittsburgh, Pittsburgh, PA, USA
| | - E Kale Edmiston
- Department of Psychiatry, University of Massachusetts Chan School of Medicine, USA
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Waler N, Daubenspeck D. Ethical Considerations Surrounding Patient Refusal of Emergent Aortic Surgery. J Cardiothorac Vasc Anesth 2024; 38:542-548. [PMID: 37880039 DOI: 10.1053/j.jvca.2023.09.016] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/04/2023] [Accepted: 09/12/2023] [Indexed: 10/27/2023]
Affiliation(s)
- Nicholas Waler
- Department of Anesthesiology and Critical Care, University of Chicago, Chicago, IL.
| | - Danisa Daubenspeck
- Department of Anesthesiology and Critical Care, University of Chicago, Chicago, IL
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Mbonde A, Young MJ, Dmytriw AA, Moyer QJ, Hirsch JA, Leslie-Mazwi TM, Rost NS, Patel AB, Regenhardt RW. Informed consent practices for acute stroke therapy: principles, challenges and emerging opportunities. J Neurol 2024; 271:188-197. [PMID: 37815578 DOI: 10.1007/s00415-023-12028-y] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/18/2023] [Revised: 09/24/2023] [Accepted: 09/25/2023] [Indexed: 10/11/2023]
Abstract
IMPORTANCE Informed consent (IC) plays a crucial yet underexplored role in acute stroke treatment, particularly in the context of intravenous thrombolysis (IVT) and endovascular thrombectomy (EVT). This narrative review examines data on current IC practices in acute ischemic stroke management, specifically for patients treated with IVT or EVT, with the aim of identifying areas for improvement and strategies to enhance the IC process. OBSERVATIONS IC practices for IVT vary significantly among hospitals and physicians with the frequency of always requiring consent ranging from 21 to 37%. Factors influencing IC for IVT include patient decision-making capacity, standard of care, time sensitive nature of treatments, legal and moral obligations, risk of complications, physician age and speciality, treatment delays, and hospital size. Consent requirements tend to be stricter for patients presenting within the 3-4.5-h window. The content and style of information shared as part of the IC process revealed discrepancies in the disclosure of stroke diagnosis, IVT mechanism, benefits, and risks. Research on IC practices for EVT is scarce, highlighting a concerning gap in the available evidence base. CONCLUSIONS AND RELEVANCE This review underscores the significant variability and knowledge gaps in IC for EVT and IVT. Challenges related to decision-making capacity assessment and the absence of standardised guidance substantially contributes to these gaps. Future initiatives should focus on simplifying information delivery to patients, developing formal tools for assessing capacity, standardising ethical frameworks to guide physicians when patients lack capacity and harmonizing IC standards across sites. The ultimate goal is to enhance IC practices and uphold patient autonomy, while ensuring timely treatment initiation.
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Affiliation(s)
- Amir Mbonde
- Harvard Medical School, Boston, MA, USA.
- Mayo Clinic Arizona, 13400 E Shea Blvd, Scottsdale, AZ, 85259, USA.
| | | | - Adam A Dmytriw
- Harvard Medical School, Boston, MA, USA
- Harvard Medical School, Boston, MA, USA
| | - Quentin J Moyer
- Harvard Medical School, Boston, MA, USA
- Harvard Medical School, Boston, MA, USA
| | | | | | | | | | - Robert W Regenhardt
- Harvard Medical School, Boston, MA, USA
- Harvard Medical School, Boston, MA, USA
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Holland E, Richards JL, Langlois WO, Zhu J, Achu-Lopes RA, Brook K. Ethical and Medicolegal Issues: When Obstetric Patients Who Refuse Blood Products Change Their Minds. Anesth Analg 2024; 138:89-95. [PMID: 38100802 DOI: 10.1213/ane.0000000000006517] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/17/2023]
Affiliation(s)
- Erica Holland
- From the Division of Maternal-Fetal Medicine
- the Department of Obstetrics and Gynecology, Boston Medical Center, Boston, Massachusetts
- Department of Obstetrics and Gynecology, Boston University Chobanian & Avedisian School of Medicine, Boston, Massachusetts
| | | | | | - Jialing Zhu
- Department of Anesthesiology, Boston Medical Center, Boston, Massachusetts
| | - Rachel A Achu-Lopes
- Department of Anesthesiology, Boston Medical Center, Boston, Massachusetts
- Department of Anesthesiology, Boston University Chobanian & Avedisian School of Medicine, Boston, Massachusetts
| | - Karolina Brook
- Department of Anesthesiology, Boston Medical Center, Boston, Massachusetts
- Department of Anesthesiology, Boston University Chobanian & Avedisian School of Medicine, Boston, Massachusetts
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9
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Xu L, Fields NL, Westmore MR, Daniel KM, Troutman BA. Application of a Decisional Capacity Assessment for Older Research Participants with Cognitive Impairment. Behav Sci (Basel) 2023; 13:767. [PMID: 37754045 PMCID: PMC10525220 DOI: 10.3390/bs13090767] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/14/2023] [Revised: 09/06/2023] [Accepted: 09/08/2023] [Indexed: 09/28/2023] Open
Abstract
Decisional capacity assessment is important for older adult participants who have cognitive impairment. This paper reports the implementation of the University of California, San Diego Brief Assessment of Capacity to Consent (UBACC) and its potential for practice and research. Nine of the 10 items remained to use except for adapting the last item. Approximately 130 older adults with cognitive impairment completed the UBACC screening. Item-by-item descriptive statistics, exploratory factor analysis (EFA), group comparisons of each item, as well as total sum scores of the UBACC were conducted. Results showed that the items that were most often answered correctly included item #10 (participant will be paid), item #4 (study is voluntary), and item #5 (can withdraw at any time). Conversely, the items that were most often answered incorrectly included item #9 (not any benefit potentially), item #7 (potential risk or discomfort), and item #6 (tasks during participation). Respondents with mild cognitive impairment had higher correct answer rates than those with advanced cognitive impairment. The UBACC screening tool has relative utility for older participants with cognitive impairment.
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Affiliation(s)
- Ling Xu
- School of Social Work, The University of Texas at Arlington, Arlington, TX 76010, USA; (N.L.F.); (M.R.W.)
| | - Noelle L. Fields
- School of Social Work, The University of Texas at Arlington, Arlington, TX 76010, USA; (N.L.F.); (M.R.W.)
| | - Megan R. Westmore
- School of Social Work, The University of Texas at Arlington, Arlington, TX 76010, USA; (N.L.F.); (M.R.W.)
| | - Kathryn M. Daniel
- College of Nursing and Health Innovation, The University of Texas at Arlington, Arlington, TX 76010, USA;
| | - Brooke A. Troutman
- McDermott Library, United States Air Force Academy, Colorado Springs, CO 80840, USA;
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Gan JM, Riley J, Basting R, Demeyere N, Pendlebury ST. Decision-making capacity in older medical in-patients: frequency of assessment and rates of incapacity by decision-type and underlying brain/mind impairment. Age Ageing 2023; 52:afad171. [PMID: 37725974 PMCID: PMC10508978 DOI: 10.1093/ageing/afad171] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/15/2023] [Revised: 06/10/2023] [Indexed: 09/21/2023] Open
Abstract
BACKGROUND Hospital clinicians find mental capacity assessment challenging and may lack the necessary skills. Given high rates of cognitive impairment, data on mental capacity assessment in real-world hospital cohorts are required to inform the need for staff training and workforce planning. OBJECTIVES In unselected medical inpatients, we determined the rate and outcome of mental capacity assessment by decision type and underlying brain/mind disorder, and recorded the discipline of the assessor. METHODS We included consecutive patients (October-November 2018; November-December 2019) admitted to the complex medicine unit providing acute multidisciplinary care for multi-morbid patients (age ≥ 16 years, average age > 80 years). Audit data were collected at ward multidisciplinary meetings and extracted from electronic patient records. RESULTS Among 892 patients (mean/SD age = 82.8/8.6, 465 male), 140 (16%) required mental capacity assessment (40/140 (29%) had ≥2 assessments) with 203 assessments in total of which 162 (80%) were done by doctors. Capacity was deemed lacking in 124 (61%) assessments, most commonly in delirium with/without other co-morbid conditions (94/114, 82%) or dementia (9/12, 75%) with lower rates in other disorders (15/27, 56%), and no formal diagnosis of brain/mind disorder (6/50, 12%). Cognitive test scores were overall lower in those lacking capacity (mean/SD abbreviated-mental-test-score = 5.2/2.6, range = 0-10 versus 6.8/2.8, P = 0.001, range = 1-10). Decisions involving discharge planning were most often assessed (48%) followed by treatment (29%), discharge against medical advice (12%) and others (11%). CONCLUSION Mental capacity assessments were performed frequently and often repeated, justifying the need for robust training in the practical application of the principles of capacity assessment for staff managing complex older patients.
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Affiliation(s)
- Jasmine M Gan
- Wolfson Centre for Prevention of Stroke and Dementia, Nuffield Department of Clinical Neurosciences, University of Oxford, Oxford, UK
| | - Josie Riley
- Departments of Acute General Medicine and Geratology, John Radcliffe Hospital, Oxford, UK
| | - Romina Basting
- Department of Experimental Psychology, University of Oxford, Oxford, UK
| | - Nele Demeyere
- Wolfson Centre for Prevention of Stroke and Dementia, Nuffield Department of Clinical Neurosciences, University of Oxford, Oxford, UK
- Department of Experimental Psychology, University of Oxford, Oxford, UK
| | - Sarah T Pendlebury
- Wolfson Centre for Prevention of Stroke and Dementia, Nuffield Department of Clinical Neurosciences, University of Oxford, Oxford, UK
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11
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Kepper PJ, Hardi A, Holden S, Holden T. Cognition, Capacity, and Consent for Elective Surgery in Older Adult Populations. J Am Coll Surg 2023; 237:578-580. [PMID: 37227066 DOI: 10.1097/xcs.0000000000000774] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 05/26/2023]
Affiliation(s)
- Paul J Kepper
- From the Washington University School of Medicine, St Louis, MO
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12
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Miller SM, Nagarkatti N, Ahuja V, Schneider EB, Mohanty S, Rosenthal RA, Kodadek LM. Surrogate consent for surgery among older adult patients. Surgery 2022; 172:1748-1752. [PMID: 36123180 DOI: 10.1016/j.surg.2022.08.015] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/01/2022] [Revised: 06/17/2022] [Accepted: 08/12/2022] [Indexed: 01/06/2023]
Abstract
BACKGROUND Surrogate consent for surgery is sought when a patient lacks capacity to consent for their own operation. The purpose of this study is to describe older adults who underwent surgical interventions with surrogate consent. METHODS A descriptive analysis was performed using data from the American College of Surgeons National Surgical Quality Improvement Program Geriatric Surgery Pilot collected from 2014 to 2018. All patients included were ≥65 years old and underwent a surgical procedure. Demographic and preoperative health characteristics were evaluated to examine differences between those with and without surrogate consent. RESULTS In total, 51,618 patients were included in this study, and 6.6% underwent an operation with surrogate consent. Surrogate consent was more common among older patients (median age 83 vs 73, P < .001), female patients (7.7% vs 5.3%, P < .001), patients undergoing emergency as opposed to elective procedures (21.9% vs 1.6%, P < .001), patients with cognitive impairment (50.5% vs 2.4%, P < .001), and patients who were dependent on others for activities of daily living (41.9% vs 4.1%, P < .001). Nearly half of patients with a diagnosis of cognitive impairment signed their own consent. CONCLUSION Surrogate consent was more common among patients who were older, female, had a higher comorbidity burden, and had preoperative disability. Nearly half of patients with documented cognitive impairment signed their own consent. These results indicate that further research is needed to understand how surgeons determine which patients require surrogate consent.
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Affiliation(s)
- Samuel M Miller
- Department of Surgery, Yale University School of Medicine, New Haven, CT; National Clinician Scholars Program, Yale School of Medicine, New Haven, CT.
| | - Nupur Nagarkatti
- Department of Surgery, Yale University School of Medicine, New Haven, CT
| | - Vanita Ahuja
- Department of Surgery, Yale University School of Medicine, New Haven, CT; Department of Surgery, West Haven VA Medical Center, CT
| | - Eric B Schneider
- Department of Surgery, Yale University School of Medicine, New Haven, CT
| | - Sanjay Mohanty
- Department of Surgery, Indiana University School of Medicine, Indianapolis, IN
| | - Ronnie A Rosenthal
- Department of Surgery, Yale University School of Medicine, New Haven, CT; Department of Surgery, West Haven VA Medical Center, CT
| | - Lisa M Kodadek
- Department of Surgery, Yale University School of Medicine, New Haven, CT
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Mandarelli G, Iannone F, Ferracuti S, Grattagliano I, Benevento M, Solarino B, Ferorelli D, Catanesi R. Informed consent and biological agents in rheumatology and internal medicine. Eur J Clin Invest 2022; 52:e13805. [PMID: 35488744 PMCID: PMC9539695 DOI: 10.1111/eci.13805] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/03/2022] [Revised: 04/19/2022] [Accepted: 04/23/2022] [Indexed: 12/05/2022]
Abstract
BACKGROUND The need for highly effective therapies in rheumatologic diseases has led to the widespread and growing use of a heterogeneous class of molecules called biological agents. The increasing experience with biological agents has raised concerns about safety and efficacy issues that need to be discussed in the informed consent acquisition process. METHODS The authors performed a review of the literature on biological agents focusing on their most important characteristics concerning the informed consent procedures. RESULTS No studies specifically addressed the issue of informed consent in patients receiving biological agents. Several studies reported data about off-label use of biological agents usually with no obvious attention to informed consent shortcomings. CONCLUSION The reported association between biological agents and serious infections or malignancies, including reactivation of latent tuberculosis, needs specific disclosure in informed consent acquisition, together with information about the possible efficacy in clinical contexts often characterized by resistance to previous treatments. Ethical and clinical issues bound to the need for experimenting with new agents with potentially serious adverse effects deserve specific attention. Studies aimed at evaluating mental capacity to consent in subjects receiving biological agents are required.
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14
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Southerland LT, Benson KK, Schoeffler AJ, Lashutka MA, Borson S, Bischof JJ. Inclusion of older adults and reporting of consent processes in randomized controlled trials in the emergency department: A scoping review. J Am Coll Emerg Physicians Open 2022; 3:e12774. [PMID: 35919513 PMCID: PMC9337842 DOI: 10.1002/emp2.12774] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/04/2022] [Revised: 06/06/2022] [Accepted: 06/07/2022] [Indexed: 01/07/2023] Open
Abstract
Objective Conducting research in the emergency department (ED) is often complicated by patients' acute and chronic illnesses, which can adversely affect cognition and subsequently capacity to consent for research, especially in older adults. Validated screening tools to assess capacity to consent for research exist, but neither the frequency of use nor which ones are used for ED research are known. Methods We conducted a scoping review using standard review techniques. Inclusion criteria included (1) randomized controlled trials (RCTs) from publication years 2014-2019 that (2) enrolled participants only in the ED, (3) included patients aged 65+ years, and (4) were fully published in English. Articles were sourced from Embase and screened using Covidence. Results From 3130 search results, 269 studies passed title/abstract and full text screening. Average of the mean or median ages was 55.7 years (SD 14.2). The mean number of study participants was 311.9 [range 8-10,807 participants]. A few (n = 13, 4.8%) waived or had exception from informed consent. Of the 256 studies requiring consent, a fourth (26.5%, n = 68) specifically excluded patients due to impaired capacity to consent. Only 11 (4.3%) documented a formal capacity screening tool and only 13 (5.1%) reported consent by legally authorized representative (LAR). Conclusions Most RCTs enrolling older adults in EDs did not report assessment of capacity to consent or use of LARs. This snapshot of informed consent procedures is potentially concerning and suggests that either research consent processes for older patients and/or reporting of consent processes require improvement.
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Affiliation(s)
- Lauren T Southerland
- Department of Emergency MedicineThe Ohio State University Wexner Medical CenterColumbusOhioUSA
| | | | | | - Margaret A. Lashutka
- Department of Emergency MedicineThe Ohio State University Wexner Medical CenterColumbusOhioUSA
| | - Soo Borson
- Department of Family MedicineKeck School of Medicine University of Southern CaliforniaLos AngelesCaliforniaUSA
| | - Jason J. Bischof
- Department of Emergency MedicineThe Ohio State University Wexner Medical CenterColumbusOhioUSA
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15
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Gornick D, Kadakuntla A, Trovato A, Stetzer R, Tadros M. Practical considerations for colorectal cancer screening in older adults. World J Gastrointest Oncol 2022; 14:1086-1102. [PMID: 35949211 PMCID: PMC9244986 DOI: 10.4251/wjgo.v14.i6.1086] [Citation(s) in RCA: 10] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/13/2021] [Revised: 03/23/2022] [Accepted: 04/30/2022] [Indexed: 02/06/2023] Open
Abstract
Recent guidelines recommend that colorectal cancer (CRC) screening after age 75 be considered on an individualized basis, and discourage screening for people over 85 due to competing causes of mortality. Given the heterogeneity in the health of older individuals, and lack of data within current guidelines for personalized CRC screening approaches, there remains a need for a clearer framework to inform clinical decision-making. A revision of the current approach to CRC screening in older adults is even more compelling given the improvements in CRC treatment, post-treatment survival, and increasing life expectancy in the population. In this review, we aim to examine the personalization of CRC screening cessation based on specific factors influencing life and health expectancy such as comorbidity, frailty, and cognitive status. We will also review screening modalities and endoscopic technique for minimizing risk, the risks of screening unique to older adults, and CRC treatment outcomes in older patients, in order to provide important information to aid CRC screening decisions for this age group. This review article offers a unique approach to this topic from both the gastroenterologist and geriatrician perspective by reviewing the use of specific clinical assessment tools, and addressing technical aspects of screening colonoscopy and periprocedural management to mitigate screening-related complications.
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Affiliation(s)
- Dana Gornick
- Albany Medical College, Albany Medical College, Albany, NY 12208, United States
| | - Anusri Kadakuntla
- Albany Medical College, Albany Medical College, Albany, NY 12208, United States
| | - Alexa Trovato
- Albany Medical College, Albany Medical College, Albany, NY 12208, United States
| | - Rebecca Stetzer
- Division of Geriatrics, Albany Medical Center, Albany, NY 12208, United States
| | - Micheal Tadros
- Division of Gastroenterology, Albany Medical Center, Albany, NY 12208, United States
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16
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Godet T, Dufraisse S, Kurrek M, Constantin JM, Chanques G. French translation of the Johns Hopkins Adapted Cognitive Examination. Anaesth Crit Care Pain Med 2022; 41:101075. [PMID: 35487411 DOI: 10.1016/j.accpm.2022.101075] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/01/2022] [Accepted: 03/01/2022] [Indexed: 11/29/2022]
Affiliation(s)
- Thomas Godet
- Centre Hospitalier Universitaire (CHU) Clermont-Ferrand, Département Anesthésie et Réanimation, F-63000 Clermont-Ferrand, France.
| | - Sophie Dufraisse
- Centre Hospitalier de Rodez, Département d'Anesthésie, Hôpital Jacques Puel, Rodez, 12027 Cedex 9, France
| | - Matthieu Kurrek
- Department of Anaesthesia, University of Toronto, Toronto, Canada; Centre Hospitaller Universitaire (CHU) Toulouse, Département Anesthésie-Réanimation, Hôpital Purpan, Toulouse, F-31000, France
| | - Jean-Michel Constantin
- Sorbonne University, GRC 29, AP-HP, DMU DREAM, Department of Anaesthesiology and Critical Care, Pitié-Salpêtrière Hospital, Paris, France
| | - Gérald Chanques
- Centre Hospitalier Universitaire (CHU) Montpellier, Département Anesthésie-Réanimation B (DAR B), Hôpital Saint-Eloi, and Inserm U-1046, F-34295 Montpellier, France
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17
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Amaral AS, Afonso RM, Simões MR, Freitas S. Decision-Making Capacity in Healthcare: Instruments Review and Reflections About its Assessment in the Elderly with Cognitive Impairment and Dementia. Psychiatr Q 2022; 93:35-53. [PMID: 33387258 DOI: 10.1007/s11126-020-09867-7] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 11/16/2020] [Indexed: 11/27/2022]
Abstract
The prevalence of neurodegenerative diseases has been significantly increasing in the last decades, and it is expected to continue to grow. These health disorders can impair patients' decision-making capacity in healthcare. The capacity to make healthcare decisions is a fundamental pillar of informed consent, therefore, it should be carefully assessed. Clinicians' assessment, when not supported by a standardized tool, has revealed to be unreliable, so the recourse to an instrument of capacity assessment is crucial. The present paper aims to identify and summarize published instruments of healthcare decision-making capacity. To do so, a search of peer-reviewed articles in English, Portuguese and Spanish was conducted. A total of eighteen articles, detailing seventeen assessment instruments were selected. Instruments differ on format, structure, assessed abilities and psychometric properties. Likewise, instruments' targeted population also varies, with a few being specifically developed for patients with dementia. Although a high number of instruments were found, there is still no gold standard for healthcare decision-making capacity assessment. The lack of a gold standard highlights the need for more research in this field, as well as an effort to develop guidelines and normative data, in order to improve clinical practices.
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Affiliation(s)
- Ana Saraiva Amaral
- University of Coimbra, Center for Research in Neuropsychology and Cognitive and Behavioral Intervention (CINEICC), Faculty of Psychology and Educational Sciences (FPCE-UC), Coimbra, Portugal.
- University of Coimbra, Psychological Assessment and Psychometrics Laboratory (PsyAssessmentLab), Faculty of Psychology and Educational Sciences (FPCE-UC), Coimbra, Portugal.
- Health Sciences Research Center (CICS), University of Beira Interior (UBI), Covilhã, Portugal.
| | - Rosa Marina Afonso
- University of Beira Interior, Department of Psychology and Education (UBI), Covilhã, Portugal
- Center for Health Technology and Services Research (CINTESIS), University of Porto, Porto, Portugal
| | - Mário R Simões
- University of Coimbra, Center for Research in Neuropsychology and Cognitive and Behavioral Intervention (CINEICC), Faculty of Psychology and Educational Sciences (FPCE-UC), Coimbra, Portugal
- University of Coimbra, Psychological Assessment and Psychometrics Laboratory (PsyAssessmentLab), Faculty of Psychology and Educational Sciences (FPCE-UC), Coimbra, Portugal
- University of Coimbra, Faculty of Psychology and Educational Sciences (FPCE-UC), Coimbra, Portugal
| | - Sandra Freitas
- University of Coimbra, Center for Research in Neuropsychology and Cognitive and Behavioral Intervention (CINEICC), Faculty of Psychology and Educational Sciences (FPCE-UC), Coimbra, Portugal
- University of Coimbra, Psychological Assessment and Psychometrics Laboratory (PsyAssessmentLab), Faculty of Psychology and Educational Sciences (FPCE-UC), Coimbra, Portugal
- University of Coimbra, Faculty of Psychology and Educational Sciences (FPCE-UC), Coimbra, Portugal
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18
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The Effect of the NorGeP–NH on Quality of Life and Drug Prescriptions in Norwegian Nursing Homes: A Randomized Controlled Trial. PHARMACY 2022; 10:pharmacy10010032. [PMID: 35202081 PMCID: PMC8880047 DOI: 10.3390/pharmacy10010032] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/10/2022] [Revised: 01/31/2022] [Accepted: 02/09/2022] [Indexed: 02/05/2023] Open
Abstract
Background: The effect of the Norwegian General Practice–Nursing Home (NorGeP–NH) criteria has never been tested on clinical outcomes in nursing home (NH) residents. We performed a cluster-randomized trial in Norwegian NHs and tested the effect of NorGeP–NH on QoL (primary outcome), medication prescriptions, and physical and mental health (secondary outcomes) for the enrolled residents; Methods: Fourteen NHs were randomized into intervention NHs (iNHs) and control NHs (cNHs). After baseline data collection, physicians performed NorGeP–NH on the enrolled residents. We assessed the difference between cNHs and iNHs in the change in primary outcome from baseline to 12 weeks and secondary outcomes from baseline to eight and 12 weeks by linear mixed models; Results: One hundred and eight residents (13 lost to follow-up) and 109 residents (nine lost to follow-up) were randomized to iNHs and cNHs, respectively. Difference in change in QoL at 12 weeks between cNHs and iNHs was not statistically significant (mean (95% CI)): −1.51 (−3.30; 0.28), p = 0.101). We found no significant change in drug prescriptions over time. Difference in depression scores between cNHs and iNHs was statistically significant after 12 weeks. Conclusions: Our intervention did not affect QoL or drug prescriptions, but reduced depression scores in the iNHs. NorGeP–NH may be a useful tool, but its effect on clinical outcomes may be scarce in NH residents. Further studies about the effectiveness of NorGeP–NH in other healthcare contexts and settings are recommended.
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Basilakos A. Ethical considerations in the management of poststroke aphasia. HANDBOOK OF CLINICAL NEUROLOGY 2022; 185:275-282. [PMID: 35078605 DOI: 10.1016/b978-0-12-823384-9.00014-1] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Subscribe] [Scholar Register] [Indexed: 11/27/2022]
Abstract
From the onset of the first signs of stroke, patients are faced with a chain of events that requires quick decision-making to ensure that lifesaving care is administered. Considering that acute stroke is often associated with altered mental status and changes in cognitive-linguistic abilities, ethical dilemmas may arise when patients are unable to provide input in their own care and must rely on surrogate decision-makers to act on their behalf. Although the most critical, lifesaving decisions are made acutely, for the patients who go on to have residual chronic cognitive-linguistic deficits, loss of language, and/or impaired cognition may mean that a healthcare power of attorney or other proxy is needed to assist with medical decision-making. This chapter discusses ethical concerns surrounding the care of stroke survivors, with a focus on how poststroke cognitive-linguistic deficits can complicate this topic; clinical recommendations are provided.
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Affiliation(s)
- Alexandra Basilakos
- Department of Communication Sciences and Disorders, University of South Carolina, Columbia, SC, United States.
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20
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Kane NB, Ruck Keene A, Owen GS, Kim SYH. Difficult Capacity Cases-The Experience of Liaison Psychiatrists. An Interview Study Across Three Jurisdictions. Front Psychiatry 2022; 13:946234. [PMID: 35898632 PMCID: PMC9309683 DOI: 10.3389/fpsyt.2022.946234] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/17/2022] [Accepted: 06/20/2022] [Indexed: 11/21/2022] Open
Abstract
BACKGROUND Assessment of capacity for treatment and discharge decisions is common in the general hospital. Liaison psychiatrists are often asked to support the treating medical or surgical team in difficult capacity assessments. However, empirical research on identification and resolution of difficult capacity cases is limited. Some studies have identified certain patient, decisional, and interpersonal factors which cause difficulty, but no study has explored how these issues are resolved in practice. Our study therefore aimed to describe how experienced liaison psychiatrists identify and resolve difficult capacity cases in a general hospital setting. METHODS We carried out semi-structured interviews with 26 liaison psychiatrists from England, Scotland, and New Zealand, on their most difficult capacity cases. Thematic analysis was used to examine types of difficulty and how these were resolved in practice. Summaries were prepared and example quotes extracted to illustrate phenomena described. RESULTS We identified four types of difficulty in capacity assessment, spanning both clinical and ethical domains: 1) Difficulty determining whether the decision is the patient's own or driven by illness, 2) Difficulty in applying ethical principles, 3) Difficulty in avoiding personal bias, and 4) Procedural difficulties. The liaison psychiatrists presented as self-reflective and aware of challenges and pitfalls in hard cases. We summarized their creative strategies to resolve difficulty in assessment. CONCLUSION Practitioners approaching difficult capacity cases require both clinical skills, e.g., to uncover subtle illness impairing decision-making and to consider interpersonal dynamics, and ethical skills, e.g., to negotiate the role of values and risks in capacity assessment. Education and training programmes should incorporate both aspects and could include the resolution strategies identified in our study. Practitioners, supported by health and social care systems, should work to develop self-aware and reflective capacity assessment practice.
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Affiliation(s)
- Nuala B Kane
- Department of Psychological Medicine, Mental Health, Ethics and Law Research Group, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom
| | - Alex Ruck Keene
- Department of Psychological Medicine, Mental Health, Ethics and Law Research Group, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom
| | - Gareth S Owen
- Department of Psychological Medicine, Mental Health, Ethics and Law Research Group, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom
| | - Scott Y H Kim
- Department of Bioethics, Clinical Center, National Institutes of Health, Bethesda, MD, United States
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21
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Macchi ZA, Lum HD. Advance care planning in neurologic illness. HANDBOOK OF CLINICAL NEUROLOGY 2022; 190:129-148. [PMID: 36055711 DOI: 10.1016/b978-0-323-85029-2.00004-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 06/15/2023]
Abstract
Advance care planning (ACP) is an essential element of neuropalliative care for persons living acquired brain injuries or progressive, neurodegenerative conditions like dementia. This includes early recognition of these conditions as needing timely ACP conversations to maximize patient autonomy and capacity in early disease, leading to discussions and documentation of patients' values and preferences for future care. ACP involves assessing patient readiness, evaluating decision-making capacity, initiating discussions early and iteratively in the disease course, identifying and preparing surrogate decision makers, and documenting patients' goals-of-care. However, this process presents unique challenges for clinicians and patients' families as individuals lose the ability to meaningfully engage in conversations due to multiple factors related to brain dysfunction. This includes evaluations of capacity for medical decision-making which consider the context in which discussions are held across multiple timepoints with repeated conversations. Research has shown that engaging in early ACP leads to greater goal-concordant care in advanced neurologic illness and affects end-of-life medical decision-making. Clinicians should be familiar with the significance of ACP in this context, understand ways for approaching these difficult discussions with patients and their families, and be aware of evidence-based tools which prepare and aid patients for these discussions. Here, we review ACP in the context of serious neurologic illness and discuss how clinicians can approach conversations with patients and families, ensure patients' values and preferences are documented and available, and explore tools which may enhance the ACP process.
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Affiliation(s)
- Zachary A Macchi
- Department of Neurology, University of Colorado School of Medicine, Anschutz Medical Campus, Aurora, CO, United States; Division of Geriatric Medicine, Department of Medicine, University of Colorado School of Medicine, Anschutz Medical Campus, Aurora, CO, United States
| | - Hillary D Lum
- Division of Geriatric Medicine, Department of Medicine, University of Colorado School of Medicine, Anschutz Medical Campus, Aurora, CO, United States.
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22
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Vrouenraets LJJJ, de Vries ALC, de Vries MC, van der Miesen AIR, Hein IM. Assessing Medical Decision-Making Competence in Transgender Youth. Pediatrics 2021; 148:183482. [PMID: 34850191 DOI: 10.1542/peds.2020-049643] [Citation(s) in RCA: 17] [Impact Index Per Article: 4.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 07/15/2021] [Indexed: 11/24/2022] Open
Abstract
BACKGROUND According to international transgender care guidelines, an important prerequisite for puberty suppression (PS) is transgender adolescents' competence to give informed consent (IC). In society, there is doubt whether transgender adolescents are capable of this, which in some countries has even led to limited access to this intervention. Therefore, this study examined transgender adolescents' medical decision-making competence (MDC) to give IC for starting PS in a structured, replicable way. Additionally, potential associated variables on MDC, such as age, intelligence, sex, psychological functioning, were investigated. METHODS A cross-sectional semistructured interview study with 74 transgender adolescents (aged 10-18 years; 16 birth-assigned boys, 58 birth-assigned girls) within two Dutch specialized gender-identity clinics was performed. To assess MDC, judgements based on the reference standard (clinical assessment) and the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), a validated semistructured interview, were used. RESULTS Of the transgender adolescents, 93.2% (reference standard judgements; 69 of 74) and 89.2% (MacCAT-T judgements; 66 of 74) were assessed competent to consent. Intermethod agreement was 87.8% (65 of 74). Interrater agreements of the reference standard and MacCAT-T-based judgements were 89.2% (198 of 222) and 86.5% (192 of 222), respectively. IQ and sex were both significantly related to MacCAT-T total score, whereas age, level of emotional and behavioral challenges, and diagnostic trajectories duration were not. CONCLUSIONS By using the MacCAT-T and clinicians' assessments, 93.2% and 89.2%, respectively, of the transgender adolescents in this study were assessed competent to consent for starting PS.
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Affiliation(s)
- Lieke J J J Vrouenraets
- Department of Child and Adolescent Psychiatry, Leiden University Medical Center Curium, Leiden University Medical Center, Oegstgeest, the Netherlands.,Department of Child and Adolescent Psychiatry, Amsterdam University Medical Center, Location VUmc, VU University, Amsterdam, the Netherlands.,Department of Medical Ethics and Health Law, Leiden University Medical Center, Leiden, the Netherlands
| | - Annelou L C de Vries
- Department of Child and Adolescent Psychiatry, Amsterdam University Medical Center, Location VUmc, VU University, Amsterdam, the Netherlands
| | - Martine C de Vries
- Department of Medical Ethics and Health Law, Leiden University Medical Center, Leiden, the Netherlands
| | - Anna I R van der Miesen
- Department of Child and Adolescent Psychiatry, Amsterdam University Medical Center, Location VUmc, VU University, Amsterdam, the Netherlands
| | - Irma M Hein
- Department of Child and Adolescent Psychiatry, Amsterdam University Medical Center and University of Amsterdam, Amsterdam, the Netherlands
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Abstract
INTRODUCTION The syndromes of mild cognitive impairment (MCI) or mild neurocognitive disorder (MiND), often prodromal to dementia (Major Neurocognitive Disorder), are characterized by acquired clinically significant changes in one or more cognitive domains despite preserved independence. Mild impairment has significant medicolegal consequences for an affected person and their care system. We review the more common etiologies of MiND and provide a systematic review of its medicolegal implications. METHODS We conducted a systematic review of the peer-reviewed English literature on medicolegal aspects of MCI or MiND using comprehensive search terms and expanding our review to include sources cited by these reports. RESULTS Impairment of memory, executive function, social cognition, judgment, insight or abstraction can alter an individual's abilities in a variety of areas that include decision making, informed consent, designation of a surrogate decision-maker such as a health care proxy, understanding and management of financial affairs, execution of a will, or safe driving. CONCLUSION Even mild cognitive impairment can have significant behavioral consequences. Clinicians can assist care partners and persons with MCI or MiND by alerting them to the medicolegal concerns that often accompany cognitive decline. Early recognition and discussion can help a care system manage medicolegal risk more effectively and promote thoughtful advance planning.
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Affiliation(s)
- Anca Bejenaru
- Department of Psychiatry and Behavioral Health, Christiana Care, Wilmington, DE, USA
| | - James M Ellison
- Department of Psychiatry and Behavioral Health, Christiana Care, Wilmington, DE, USA.,Department of Family and Community Medicine, Christiana Care, Wilmington, DE, USA.,Department of Psychiatry & Human Behavior, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, PA, USA
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Lapid MI, Clarke BL, Ho JB, Ouellette Y, Armbrust TL, Wright RS. Research Involving Participants With Impaired Consent Capacity: An Examination of Methods to Determine Capacity to Consent. Mayo Clin Proc 2021; 96:2806-2822. [PMID: 34736608 DOI: 10.1016/j.mayocp.2021.04.029] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/20/2020] [Revised: 03/24/2021] [Accepted: 04/29/2021] [Indexed: 12/19/2022]
Abstract
OBJECTIVE To examine methods of assessing consent capacity in research protocols involving participants with impaired consent capacity, and examine instruments used to evaluate research consent capacity. METHODS A retrospective review of 330 active research protocols involving participants lacking capacity to consent over a 10-year period (January 1, 2009, through March 1, 2019) was conducted to collect protocol characteristics (medical specialty, level of risk and type of study, consent and assent procedures, and type of vulnerable or protected population). Methods to assess consent capacity are described, and instruments to assess consent capacity are summarized. RESULTS The specialties most frequently involving participants with impaired consent capacity in research were Neurology (27.3%), Critical Care (16.7%), and Surgery (10%). Type of studies are observational (43.9%), clinical trials (33%), chart review (11.5%), biobank (6.1%), and biomarker (5.5%). Minimal risk (53.3%) outnumbered greater than minimal risk (46.7%) studies. Most obtained written informed consent (77%) and assent (40.9%). The most common method to assess consent capacity was direct assessment by investigators (32.7%). Only 86 (26%) studies used instruments to assess consent capacity. Of the 13 instruments used, the most common was the Evaluation of Decision-Making Capacity for Consent to Act as a Research Subject, and is the only instrument that assesses all four components of decisional capacity: understanding, appreciation, reasoning, and choice. CONCLUSION Generally, there was lack of uniformity in determining capacity to consent to research participation. Very few studies used instruments to assess consent capacity. Institutional review boards can provide greater guidance for research consent capacity determination.
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Affiliation(s)
- Maria I Lapid
- Department of Psychiatry and Psychology, Mayo Clinic, Rochester, MN; Mayo Clinic Institutional Review Board and Office of Human Research Protection Program, Mayo Clinic, Rochester, MN.
| | - Bart L Clarke
- Department of Internal Medicine, Division of Endocrinology, Mayo Clinic, Rochester, MN; Mayo Clinic Institutional Review Board and Office of Human Research Protection Program, Mayo Clinic, Rochester, MN
| | - Jacqueline B Ho
- Department of Psychiatry and Psychology, Mayo Clinic, Rochester, MN; Mayo Clinic Undergraduate Research Employment Program, Mayo Clinic, Rochester, MN
| | - Yves Ouellette
- Department of Pediatric and Adolescent Medicine, Mayo Clinic, Rochester, MN; Mayo Clinic Institutional Review Board and Office of Human Research Protection Program, Mayo Clinic, Rochester, MN
| | - Tamyra L Armbrust
- Mayo Clinic Institutional Review Board and Office of Human Research Protection Program, Mayo Clinic, Rochester, MN
| | - R Scott Wright
- Department of Cardiology, Mayo Clinic, Rochester, MN; Mayo Clinic Institutional Review Board and Office of Human Research Protection Program, Mayo Clinic, Rochester, MN
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Brunel M, Mallevaey B, Przygodzki-Lionet N. Évaluer le discernement : une perspective biopsychosociale. PRAT PSYCHOL 2021. [DOI: 10.1016/j.prps.2021.07.001] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/30/2022]
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Toomey J. “As Long As I’m Me”: From Personhood to Personal Identity in Dementia and Decision-making. CANADIAN JOURNAL OF BIOETHICS 2021. [DOI: 10.7202/1077627ar] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022] Open
Abstract
As older people begin to develop dementia, we confront ethical questions about when and how to intervene in their increasingly compromised decision-making. The prevailing approach in bioethics to tackling this challenge has been to develop theories of “decision-making capacity” based on the same characteristics that entitle the decisions of moral persons to respect in general. This article argues that this way of thinking about the problem has missed the point. Because the disposition of property is an identity-dependent right, what matters in dementia and decision-making is an individual’s personal identity with their prior self, not their moral personhood. Therefore, in considering when and how we ought to intervene in the decision-making of those with dementia, we must look to the philosophy of personal identity rather than personhood.
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Affiliation(s)
- James Toomey
- Climenko Fellow & Lecturer on Law, Harvard Law School, United States
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27
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Todd JA, Lawson C, Grealish L. Making clinical care decisions with people living with dementia in hospital: An integrative literature review. Int J Nurs Stud 2021; 120:103979. [PMID: 34087525 DOI: 10.1016/j.ijnurstu.2021.103979] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/17/2020] [Revised: 04/29/2021] [Accepted: 05/04/2021] [Indexed: 10/21/2022]
Abstract
BACKGROUND As our population ages, the percentage of hospitalised patients diagnosed with dementia is expected to rise. However, there is emerging evidence that people living with dementia may experience discrimination and exclusion from decisions about their clinical care. Although dementia affects cognition, many patients living with dementia want to participate in decision-making processes relating to their clinical care in hospital. OBJECTIVE Identify the processes associated with making decisions about clinical care with people living with dementia in hospital. DESIGN An integrative literature review. DATA SOURCES Cumulative Index of Nursing and Allied Health Literature (CINAHL), Scopus, EMBASE (Ovid), MEDLINE (PubMED), PsycINFO and HeinOnline. REVIEW METHOD One author conducted the initial screening of titles, and two authors screened in subsequent rounds for abstracts and full text. The process of making clinical decisions was the outcome of interest. Articles about people with cognitive impairment that did not include dementia, or decisions such as discharge planning or end of life care were excluded. An inductive synthesis of the findings was undertaken. RESULTS Nine articles were identified for review and included expert opinion or hypothetical discussion (n=5), cross-sectional survey research (n=3), and qualitative research (n=1). Three themes were identified: capacity for decision-making is conceptualised as 'all or nothing'; there are no universal principles for including people living with dementia in decision-making in acute care settings; and autonomy is recognised but superseded by beneficence. CONCLUSIONS Contemporary hospital practice is focused on determining capacity for decisions, with an all or nothing attitude to capacity, effectively excluding many people living with dementia from participation in decisions. While there is limited evidence to guide clinicians in this complex and situated process of making clinical decisions, emerging models of supported decision-making require further evaluation in the hospital setting.
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Affiliation(s)
- Jo-Anne Todd
- School of Nursing & Midwifery, Griffith University, Gold Coast, QLD 4215 Australia
| | - Charles Lawson
- Griffith Law School, Griffith University, Gold Coast, QLD 4215 Australia
| | - Laurie Grealish
- School of Nursing & Midwifery, Griffith University, Gold Coast, QLD 4215 Australia; Menzies Health Institute Queensland, Griffith University; Gold Coast Hospital & Health Services.
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Wiebe E, Kelly M, McMorrow T, Tremblay-Huet S, Hennawy M. Assessment of capacity to give informed consent for medical assistance in dying: a qualitative study of clinicians' experience. CMAJ Open 2021; 9:E358-E363. [PMID: 33849985 PMCID: PMC8084565 DOI: 10.9778/cmajo.20200136] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/22/2022] Open
Abstract
BACKGROUND Under the Canadian Criminal Code, medical assistance in dying (MAiD) requires that patients give informed consent and that their ability to consent is assessed by 2 clinicians. In this study, we intended to understand how Canadian clinicians assessed capacity in people requesting MAiD. METHODS This qualitative study used interviews conducted between August 2019 and February 2020, by phone, video and email, to explore how clinicians assessed capacity in people requesting MAiD, what challenges they had encountered and what tools they used. The participants were recruited from provider mailing listserves of the Canadian Association of MAiD Assessors and Providers and Aide médicale à mourir. Interviews were audio-recorded and transcribed verbatim. The research team met to review transcripts and explore themes as they emerged in an iterative manner. We used abductive reasoning for thematic analysis and coding, and continued to discuss until we reached consensus. RESULTS The 20 participants worked in 5 of 10 provinces across Canada, represented different specialties and had experience assessing a total of 2410 patients requesting MAiD. The main theme was that, for most assessments, the participants used the conversation about how the patient had come to choose MAiD to get the information they needed. When the participants used formal capacity assessment tools, this was mostly for meticulous documentation, and they rarely asked for psychiatric consults. The participants described how they approached assessing cases of nonverbal patients and other challenging cases, using techniques such as ensuring a quiet environment and adequate hearing aids, and using questions requiring only "yes" or "no" as an answer. INTERPRETATION The participants were comfortable doing MAiD assessments and used their clinical judgment and experience to assess capacity in ways similar to other clinical practices. The findings of this study suggest that experienced MAiD assessors do not routinely require formal capacity assessments or tools to assess capacity in patients requesting MAiD.
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MESH Headings
- Attitude of Health Personnel
- Canada
- Clinical Decision-Making/ethics
- Clinical Decision-Making/methods
- Codes of Ethics
- Euthanasia, Active, Voluntary/ethics
- Euthanasia, Active, Voluntary/legislation & jurisprudence
- Euthanasia, Active, Voluntary/psychology
- Guidelines as Topic
- Humans
- Informed Consent/standards
- Mental Competency
- Nurses
- Physicians
- Practice Patterns, Physicians'/ethics
- Practice Patterns, Physicians'/standards
- Professional Practice/statistics & numerical data
- Qualitative Research
- Right to Die/ethics
- Right to Die/legislation & jurisprudence
- Social Control, Formal/methods
- Suicide, Assisted/ethics
- Suicide, Assisted/legislation & jurisprudence
- Suicide, Assisted/psychology
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Affiliation(s)
- Ellen Wiebe
- Department of Family Practice (Wiebe), University of British Columbia, Vancouver, BC; University of London (Kelly), London School of Hygiene and Tropical Medicine, Department of Epidemiology and Population Health, London, UK; Ontario Tech University (McMorrow), Faculty of Social Science and Humanities, Legal Studies, Oshawa, Ont.; Université de Sherbrooke (Tremblay-Huet), Faculty of Law, Sherbrook, Que.; University of British Columbia (Hennawy), Kelowna, BC
| | - Michaela Kelly
- Department of Family Practice (Wiebe), University of British Columbia, Vancouver, BC; University of London (Kelly), London School of Hygiene and Tropical Medicine, Department of Epidemiology and Population Health, London, UK; Ontario Tech University (McMorrow), Faculty of Social Science and Humanities, Legal Studies, Oshawa, Ont.; Université de Sherbrooke (Tremblay-Huet), Faculty of Law, Sherbrook, Que.; University of British Columbia (Hennawy), Kelowna, BC
| | - Thomas McMorrow
- Department of Family Practice (Wiebe), University of British Columbia, Vancouver, BC; University of London (Kelly), London School of Hygiene and Tropical Medicine, Department of Epidemiology and Population Health, London, UK; Ontario Tech University (McMorrow), Faculty of Social Science and Humanities, Legal Studies, Oshawa, Ont.; Université de Sherbrooke (Tremblay-Huet), Faculty of Law, Sherbrook, Que.; University of British Columbia (Hennawy), Kelowna, BC
| | - Sabrina Tremblay-Huet
- Department of Family Practice (Wiebe), University of British Columbia, Vancouver, BC; University of London (Kelly), London School of Hygiene and Tropical Medicine, Department of Epidemiology and Population Health, London, UK; Ontario Tech University (McMorrow), Faculty of Social Science and Humanities, Legal Studies, Oshawa, Ont.; Université de Sherbrooke (Tremblay-Huet), Faculty of Law, Sherbrook, Que.; University of British Columbia (Hennawy), Kelowna, BC
| | - Mirna Hennawy
- Department of Family Practice (Wiebe), University of British Columbia, Vancouver, BC; University of London (Kelly), London School of Hygiene and Tropical Medicine, Department of Epidemiology and Population Health, London, UK; Ontario Tech University (McMorrow), Faculty of Social Science and Humanities, Legal Studies, Oshawa, Ont.; Université de Sherbrooke (Tremblay-Huet), Faculty of Law, Sherbrook, Que.; University of British Columbia (Hennawy), Kelowna, BC
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Taneja R, Sibbald R, Elliott L, Burke E, Bishop KA, Jones PM, Goldszmidt M. Exploring and reconciling discordance between documented and preferred resuscitation preferences for hospitalized patients: a quality improvement study. Can J Anaesth 2021; 68:530-540. [PMID: 33452662 DOI: 10.1007/s12630-020-01906-y] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/08/2020] [Revised: 10/02/2020] [Accepted: 10/07/2020] [Indexed: 10/22/2022] Open
Abstract
PURPOSE A discordance, predominantly towards overtreatment, exists between patients' expressed preferences for life-sustaining interventions and those documented at hospital admission. This quality improvement study sought to assess this discordance at our institution. Secondary objectives were to explore if internal medicine (IM) teams could identify patients who might benefit from further conversations and if the discordance can be reconciled in real-time. METHODS Two registered nurses were incorporated into IM teams at a tertiary hospital to conduct resuscitation preference conversations with inpatients either specifically referred to them (group I, n = 165) or randomly selected (group II, n = 164) from 1 August 2016 to 31 August 2018. Resuscitation preferences were documented and communicated to teams prompting revised resuscitation orders where appropriate. Multivariable logistic regression was used to determine potential risk factors for discordance. RESULTS Three hundred and twenty-nine patients were evaluated with a mean (standard deviation) age of 80 (12) and Charlson Comorbidity Index Score of 6.8 (2.6). Discordance was identified in 63/165 (38%) and 27/164 (16%) patients in groups I and II respectively. 42/194 patients (21%) did not want cardiopulmonary resuscitation (CPR) and 15/36 (41%) did not prefer intensive care unit (ICU) admission, despite these having been indicated in their initial preferences. 93% (84/90) of patients with discordance preferred de-escalation of care. Discordance was reconciled in 77% (69/90) of patients. CONCLUSION Hospitalized patients may have preferences documented for CPR and ICU interventions contrary to their preferences. Trained nurses can identify inpatients who would benefit from further in-depth resuscitation preference conversations. Once identified, discordance can be reconciled during the index admission.
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Affiliation(s)
- Ravi Taneja
- Division of Critical Care, University of Western Ontario, London, ON, Canada.
- Department of Medicine, Division of Internal Medicine, University of Western Ontario, London, ON, Canada.
- Centre for Education Research and Innovation, University of Western Ontario, London, ON, Canada.
- London Health Sciences Centre, University Hospital, B2-223, 339 Windermere Road, London, ON, N6A 5A5, Canada.
| | - Robert Sibbald
- Centre for Education Research and Innovation, University of Western Ontario, London, ON, Canada
- Department of Clinical and Corporate Ethics, London Health Sciences Centre, London, ON, Canada
| | - Launa Elliott
- Division of Critical Care, University of Western Ontario, London, ON, Canada
- Department of Clinical and Corporate Ethics, London Health Sciences Centre, London, ON, Canada
| | - Elizabeth Burke
- Division of Critical Care, University of Western Ontario, London, ON, Canada
| | - Kristen A Bishop
- Centre for Education Research and Innovation, University of Western Ontario, London, ON, Canada
| | - Philip M Jones
- Department of Anesthesia and Perioperative Medicine, University of Western Ontario, London, ON, Canada
- Department of Epidemiology & Biostatistics, University of Western Ontario, London, ON, Canada
| | - Mark Goldszmidt
- Department of Medicine, Division of Internal Medicine, University of Western Ontario, London, ON, Canada
- Centre for Education Research and Innovation, University of Western Ontario, London, ON, Canada
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McGovern MM, McTague MF, Stevens E, Medina JCN, Franco-Garcia E, Heng M. Impact of Age on Consent in a Geriatric Orthopaedic Trauma Patient Population. Geriatr Orthop Surg Rehabil 2021; 12:21514593211003065. [PMID: 33868766 PMCID: PMC8020399 DOI: 10.1177/21514593211003065] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/17/2021] [Revised: 02/17/2021] [Accepted: 02/22/2021] [Indexed: 11/17/2022] Open
Abstract
Introduction: Persistent misconceptions of frailty and dementia in geriatric patients impact physician-patient communication and leave patients vulnerable to disempowerment. Physicians may inappropriately focus the discussion of treatment options to health care proxies instead of patients. Our study explores the consenting process in a decision-making capable orthogeriatric trauma patient population to determine if there is a relationship between increased patient age and surgical consent by health care proxy. Methods: Patients aged 65 and older who underwent operative orthopaedic fracture fixation between 1 of 2 Level 1 Trauma Centers were retrospectively reviewed. Decision-making capable status was defined as an absence of patient history of cognitive impairment and a negative patient pre-surgical Confusion Assessment Method (CAM) and Mini-Cog Assessment screen. Provider of surgical consent was the main outcome and was determined by signature on the consent form. Results: 510 patients were included, and 276 (54.1%) patients were deemed capable of consent. In 27 (9.8%) of 276 decision-capable patients, physicians obtained consent from health care proxies. 20 of these 27 patients (74.1%) were 80 years of age or older. However, in patients aged 70 to 79, only 7 health care proxies provided consent. (p = 0.07). For every unit increase in age, the log odds of proxy consent increased by .0008 (p < 0.001). Age (p < 0.001), income level (p = 0.03), and physical presence of proxy at consult (p < 0.001) were factors associated with significantly increased utilization of health care proxy provided consent. Language other than English was a significant predictor of proxy-provided consent (p = 0.035). 48 (22%) decision-making incapable patients provided their own surgical consent. Discussion: The positive linear association between age and health care proxy provided consent in cognitively intact geriatric orthopaedic patients indicates that increased patient age impacts the consenting process. Increased physician vigilance and adoption of institutional consenting guidelines can reinforce appropriate respect of geriatric patients’ consenting capacity.
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Affiliation(s)
- Madeline M McGovern
- Sidney Kimmel Medical College at Thomas Jefferson University, Philadelphia, PA, USA
| | - Michael F McTague
- Department of Orthopaedic Surgery, Massachusetts General Hospital, Harvard Medical School Orthopedic Trauma Initiative, Boston, MA, USA
| | - Erin Stevens
- Department of Internal Medicine, Division of Palliative Medicine, Ohio State University, Columbus, Ohio, USA
| | - Juan Carlos Nunez Medina
- Division of Palliative Care & Geriatric Medicine, Department of Medicine, Massachusetts General Hospital, Boston, MA, USA
| | - Esteban Franco-Garcia
- Division of Palliative Care & Geriatric Medicine, Department of Medicine, Massachusetts General Hospital, Boston, MA, USA
| | - Marilyn Heng
- Department of Orthopaedic Surgery, Massachusetts General Hospital, Harvard Medical School Orthopedic Trauma Initiative, Boston, MA, USA
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Matrick A, Babb E, Dinwiddie SH. Assessment of Need for Guardianship: What Is the Role of the Psychiatrist? Psychiatr Ann 2021. [DOI: 10.3928/00485713-20210211-01] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/20/2022]
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Marron JM, Kyi K, Appelbaum PS, Magnuson A. Medical Decision-Making in Oncology for Patients Lacking Capacity. Am Soc Clin Oncol Educ Book 2021; 40:1-11. [PMID: 32347758 DOI: 10.1200/edbk_280279] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/20/2022]
Abstract
Modern oncology practice is built upon the idea that a patient with cancer has the legal and ethical right to make decisions about their medical care. There are situations in which patients might no longer be fully able to make decisions on their own behalf, however, and some patients never were able to do so. In such cases, it is critical to be aware of how to determine if a patient has the ability to make medical decisions and what should be done if they do not. In this article, we examine the concept of decision-making capacity in oncology and explore situations in which patients may have altered/diminished capacity (e.g., depression, cognitive impairment, delirium, brain tumor, brain metastases, etc.) or never had decisional capacity (e.g., minor children or developmentally disabled adults). We describe fundamental principles to consider when caring for a patient with cancer who lacks decisional capacity. We then introduce strategies for capacity assessment and discuss how clinicians might navigate scenarios in which their patients could lack capacity to make decisions about their cancer care. Finally, we explore ways in which pediatric and medical oncology can learn from one another with regard to these challenging situations.
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Affiliation(s)
- Jonathan M Marron
- Department of Pediatric Oncology, Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, MA.,Harvard Medical School, Boston, MA.,Center for Bioethics, Harvard Medical School, Boston, MA
| | - Kaitlin Kyi
- Department of Medicine, University of Rochester Medical Center, Rochester, NY
| | - Paul S Appelbaum
- Department of Psychiatry, Vagelos College of Physicians and Surgeons, Columbia University, New York, NY
| | - Allison Magnuson
- Division of Hematology/Oncology, University of Rochester Medical Center, Rochester, NY
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Mills WL, Kunik ME, Kelly PA, Wilson NL, Starks S, Asghar-Ali A, Curren-Vo H, Naik AD. Validation of the MEDSAIL Tool to Screen for Capacity for Safe and Independent Living Among Nursing Home Residents. J Am Med Dir Assoc 2020; 21:1992-1996. [PMID: 32636169 DOI: 10.1016/j.jamda.2020.05.008] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/10/2019] [Revised: 03/20/2020] [Accepted: 05/04/2020] [Indexed: 11/19/2022]
Abstract
OBJECTIVES Capacity for safe and independent living (SAIL) refers to an individual's ability to solve problems associated with everyday life and perform activities necessary for living independently. Little guidance exists on the assessment of capacity for SAIL among nursing home residents. As a result, capacity for SAIL is not fully considered in the development of discharge plans to ensure safety and independence in the community. We reasoned that this problem could be addressed with the Making and Executing Decisions for Safe and Independent Living (MEDSAIL) tool, developed to screen for capacity for SAIL among community-dwelling older adults. In this report, we describe findings on the validity of the MEDSAIL when used with nursing home residents. DESIGN Prospective cross-sectional pilot study. SETTING AND PARTICIPANTS Twenty-four residents of a Veterans Health Affairs Community Living Center (CLC; nursing home); exclusion criteria were cognitive impairment too severe to complete the protocol, diagnosis of serious mental illness or developmental disability, inability to hear, or inability to communicate verbally. METHODS Participants completed 2 assessments: the MEDSAIL interview administered by a research assistant and the criterion standard capacity interview administered by a geriatric psychiatrist. We examined internal consistency, divergent validity, and criterion-based validity. RESULTS Five of 7 MEDSAIL scenarios approximated acceptable levels of internal consistency (α >0.70). MEDSAIL scores were highly positively correlated with criterion standard capacity determination (0.88, P = .001), and the Wilcoxon rank-sum test statistic for the 2 assessments was also statistically significant (P = .001). CONCLUSIONS AND IMPLICATIONS MEDSAIL has promise as a user-friendly brief screening tool for use by nursing home staff to understand resident capacity for SAIL. This information can be used in the development of discharge plans to keep the resident safe and independent in the community. In addition, tailoring the MEDSAIL scenarios specifically to the nursing home setting may further enhance the tool's validity and utility in this new application.
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Affiliation(s)
- Whitney L Mills
- Center for Innovation in Long-Term Services and Supports, Providence VA Medical Center, Providence, RI, USA; Department of Health Services, Policy and Practice, School of Public Health, Brown University, Providence, RI, USA.
| | - Mark E Kunik
- VA South Central Mental Illness Research, Education, and Clinical Center, Houston, TX, USA; Center for Innovation in Quality, Effectiveness, and Safety, Michael E. DeBakey VA Medical Center, Houston, TX, USA; Menninger Department of Psychiatry and Behavioral Science, Baylor College of Medicine, Houston, TX, USA
| | - P Adam Kelly
- Southeast Louisiana Veterans Health Care System, New Orleans, LA, USA; John W. Deming Department of Medicine, Tulane University School of Medicine, New Orleans, LA, USA
| | - Nancy L Wilson
- Section of Geriatric Medicine, Department of Medicine, Baylor College of Medicine, Houston, TX, USA
| | - Steven Starks
- Department of Clinical Sciences, University of Houston College of Medicine, Houston, TX, USA
| | | | - Hannah Curren-Vo
- Center for Innovation in Long-Term Services and Supports, Providence VA Medical Center, Providence, RI, USA
| | - Aanand D Naik
- Center for Innovation in Quality, Effectiveness, and Safety, Michael E. DeBakey VA Medical Center, Houston, TX, USA; Section of Geriatric Medicine, Department of Medicine, Baylor College of Medicine, Houston, TX, USA; Section of Health Services Research, Department of Medicine, Baylor College of Medicine, Houston, TX, USA
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Hermann H, Feuz M, Trachsel M, Biller-Andorno N. Decision-making capacity: from testing to evaluation. MEDICINE, HEALTH CARE, AND PHILOSOPHY 2020; 23:253-259. [PMID: 32350707 DOI: 10.1007/s11019-019-09930-6] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 06/11/2023]
Abstract
Decision-making capacity (DMC) is the gatekeeping element for a patient's right to self-determination with regard to medical decisions. A DMC evaluation is not only conducted on descriptive grounds but is an inherently normative task including ethical reasoning. Therefore, it is dependent to a considerable extent on the values held by the clinicians involved in the DMC evaluation. Dealing with the question of how to reasonably support clinicians in arriving at a DMC judgment, a new tool is presented that fundamentally differs from existing ones: the U-Doc. By putting greater emphasis on the judgmental process rather than on the measurement of mental abilities, the clinician as a decision-maker is brought into focus, rendering the tool more of an evaluation guide than a test instrument. In a qualitative study, the perceived benefits of and difficulties with the tool have been explored. The findings show on the one hand that the evaluation aid provides basic orientation, supports a holistic perspective on the patient, sensitizes for ethical considerations and personal biases, and helps to think through the decision, to argue, and to justify one's judgment. On the other hand, the room for interpretation due to absent operationalisations, related ambiguities, and the confrontation with one's own subjectivity may be experienced as unsettling.
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Affiliation(s)
- Helena Hermann
- Institute of Biomedical Ethics and History of Medicine, University of Zurich, Winterthurerstrasse 30, 8006, Zurich, Switzerland
| | - Martin Feuz
- Institute of Biomedical Ethics and History of Medicine, University of Zurich, Winterthurerstrasse 30, 8006, Zurich, Switzerland
| | - Manuel Trachsel
- Institute of Biomedical Ethics and History of Medicine, University of Zurich, Winterthurerstrasse 30, 8006, Zurich, Switzerland
| | - Nikola Biller-Andorno
- Institute of Biomedical Ethics and History of Medicine, University of Zurich, Winterthurerstrasse 30, 8006, Zurich, Switzerland.
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Assessment of patient competence for making decisions. Rev Clin Esp 2020. [DOI: 10.1016/j.rceng.2019.04.013] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/30/2022]
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Palacios G, Pinto P, Marquez O, Herreros B. Valoración de la competencia de los pacientes para tomar decisiones. Rev Clin Esp 2020; 220:256-262. [DOI: 10.1016/j.rce.2019.04.009] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/08/2019] [Revised: 03/30/2019] [Accepted: 04/09/2019] [Indexed: 11/27/2022]
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Disagreement Between Clinicians and Score in Decision-Making Capacity of Critically Ill Patients. Crit Care Med 2020; 47:337-344. [PMID: 30418220 DOI: 10.1097/ccm.0000000000003550] [Citation(s) in RCA: 11] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/26/2022]
Abstract
OBJECTIVES To compare the assessment of decision-making capacity of ICU patients by attending clinicians (physicians, nurses, and residents) with a capacity score measured by the Mini-Mental Status Examination, completed by Aid to Capacity Evaluation if necessary. The primary outcome was agreement between physicians' assessments and the score. Secondary outcomes were agreement between nurses' or residents' assessments and the score and identification of factors associated with disagreement. DESIGN A 1-day prevalence study. SETTING Nineteen ICUs in France. SUBJECTS All patients hospitalized in the ICU on the study day and the attending clinicians. INTERVENTIONS The decision-making capacity of patients was assessed by the attending clinicians and independently by an observer using the score. MEASUREMENTS AND MAIN RESULTS A total of 206 patients were assessed by 213 attending clinicians (57 physicians, 97 nurses, and 59 residents). Physicians designated more patients as having decision-making capacity (n = 92/206 [45%]) than score (n = 34/206 [17%]; absolute difference 28% [95% CI, 20-37%]; p = 0.001). There was a high disagreement between assessments of all clinicians and score (Kappa coefficient 0.39 [95% CI, 0.29-0.50] for physicians; 0.39 [95% CI, 0.27-0.52] for nurses; and 0.46 [95% CI, 0.35-0.58] for residents). The main factor associated with disagreement was a Glasgow Coma Scale score between 10 and 15 (odds ratio, 2.92 [1.18-7.19], p = 0.02 for physicians; 4.97 [1.50-16.45], p = 0.01 for nurses; and 3.39 [1.12-10.29], p = 0.03 for residents) without differentiating between the Glasgow Coma Scale scores from 10 to 15. CONCLUSIONS The decision-making capacity of ICU patients was largely overestimated by all attending clinicians as compared with a score. The main factor associated with disagreement was a Glasgow Coma Scale score between 10 and 15, suggesting that clinicians confused consciousness with decision-making capacity.
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Neurological Deficits in Stroke Patients that May Impede the Capacity to Provide Informed Consent for Endovascular Treatment Trials. J Stroke Cerebrovasc Dis 2019; 28:104447. [PMID: 31624035 DOI: 10.1016/j.jstrokecerebrovasdis.2019.104447] [Citation(s) in RCA: 12] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/02/2019] [Revised: 09/16/2019] [Accepted: 09/22/2019] [Indexed: 01/10/2023] Open
Abstract
BACKGROUND We assessed the occurrence of neurological deficits that may impede the capacity to provide consent for trial participation in patients with an acute stroke, who are eligible for endovascular treatment (EVT). METHODS We used data from the Multicenter Randomized Controlled Trial of Endovascular Treatment for Acute Ischemic Stroke in the Netherlands Registry, a prospective observational cohort study. We included 1526 patients with an anterior large vessel occlusion, undergoing EVT between March 2014 and June 2016. We based our assessment of decision-making capacity for trial participation on neurological symptoms influencing conditions concerning informed consent as stated in the declaration of Helsinki. We formulated a strict and a mild capacity assessment rule, using 2 different cut points in item scores on the National Institutes of Health Stroke Scale (NIHSS). RESULTS Applying the strict and mild rule, respectively 1469 (96%) and 1220 (80%) patients deemed not capable of decision-making for trial participation on admission, and 1077 (79%) and 825 (60%) patients at 24-48 hours after admission. Highest frequencies of predefined scores suggesting incapacity based on the strict rule were on the NIHSS items "Level of Consciousness Questions" (59%), "Best Gaze" (68%), and "Best Language" (58%). Patients who were considered incapable were older (median 71 versus 66 years, P = .043), had higher NIHSS scores (median 16 versus 8, P < .001), and had more often left hemisphere strokes (55% versus 28%, P < .001) than patients who were presumably capable. CONCLUSIONS In the majority of patients with an anterior circulation stroke who are eligible for EVT, neurological deficits are present that may impede the capacity to provide informed consent for trial participation.
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Mandarelli G, Parmigiani G, Carabellese F, Codella S, Roma P, Brancadoro D, Ferretti A, Alessandro L, Pinto G, Ferracuti S. Decisional capacity to consent to treatment and anaesthesia in patients over the age of 60 undergoing major orthopaedic surgery. MEDICINE, SCIENCE, AND THE LAW 2019; 59:247-254. [PMID: 31366276 DOI: 10.1177/0025802419865854] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 06/10/2023]
Abstract
Despite growing attention to the ability of patients to provide informed consent to treatment in different medical settings, few studies have dealt with the issue of informed consent to major orthopaedic surgery in those over the age of 60. This population is at risk of impaired decision-making capacity (DMC) because older age is often associated with a decline in cognitive function, and they often present with anxiety and depressive symptoms, which could also affect their capacity to consent to treatment. Consent to major orthopaedic surgery requires the patient to understand, retain and reason about complex procedures. This study was undertaken to extend the literature on decisional capacity to consent to surgery and anaesthesia of patients over the age of 60 undergoing major orthopaedic surgery. Recruited patients ( N=83) were evaluated using the Aid to Capacity Evaluation, the Beck Depression Inventory, the State–Trait Anxiety Inventory Y, the Mini-Mental State Examination and a visual analogue scale for measuring pain symptomatology. Impairment of medical DMC was common in the overall sample, with about 50% of the recruited patients showing a doubtful ability, or overt inability, to provide informed consent. Poor cognitive functioning was associated with reduced medical DMC, although no association was found between decisional capacity and depressive, anxiety and pain symptoms. These findings underline the need of an in-depth assessment of capacity in older patients undergoing major orthopaedic surgery.
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Affiliation(s)
| | | | - Felice Carabellese
- Section of Criminology and Forensic Psychiatry, Department of Interdisciplinary Medicine, University of Bari, Italy
| | - Silvia Codella
- Anesthesiology Department, Sant'Andrea Hospital, 'Sapienza' University of Rome, Italy
| | - Paolo Roma
- Department of Human Neurosciences, 'Sapienza' University of Rome, Italy
| | - Domitilla Brancadoro
- Anesthesiology Department, Sant'Andrea Hospital, 'Sapienza' University of Rome, Italy
| | - Andrea Ferretti
- Orthopaedic Unit, Sant'Andrea Hospital, 'Sapienza' University of Rome, Italy
| | | | - Giovanni Pinto
- Anesthesiology Department, Sant'Andrea Hospital, 'Sapienza' University of Rome, Italy
| | - Stefano Ferracuti
- Department of Human Neurosciences, 'Sapienza' University of Rome, Italy
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Wade DT. Determining whether someone has mental capacity to make a decision: clinical guidance based on a review of the evidence. Clin Rehabil 2019; 33:1561-1570. [DOI: 10.1177/0269215519853013] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/27/2022]
Abstract
Valid consent to healthcare treatments depends upon a person having the capacity to give it. The Mental Health Act not only requires a presumption of capacity but also expects clinicians to take reasonable steps to establish whether the patient lacks capacity. The facts are that (1) lack of capacity is common among hospital inpatients and people in the community needing care, but is often not recognized. (2) Capacity must not be judged on the basis of the decision made: an unwise decision is not evidence of a lack of capacity, and a decision expected by the clinician is not evidence of capacity. Capacity is decision-specific and must be considered critically without preconceptions. There is no valid other test. (3) Clinically people will fall into four groups: (a) obviously lack capacity and will not recover it, (b) obviously lack capacity but will recover soon, (c) obviously have capacity, (d) capacity is in doubt and major healthcare decision needed. Only the last group need more detailed attention. (4) Capacity is (a) relative to the complexity of the information; (b) on a spectrum, not categorical; (c) decided using clinical judgement; and (d) subject to disagreement among assessors. The recommendations are as follows: (1) capacity should always be considered within the decision-making process, and the outcome should be documented, with sufficient information to understand the opinion given. (2) Detailed assessment should be reserved for situations when (a) a major decision is needed and (b) there is time to assess and discuss the assessment.
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Affiliation(s)
- Derick T Wade
- OxINMAHR and Movement Science Group, Faculty of Health and Life Sciences, Oxford Brookes University, Oxford, UK
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Overbeek A, Korfage IJ, Hammes BJ, van der Heide A, Rietjens JAC. Experiences with and outcomes of Advance Care Planning in bereaved relatives of frail older patients: a mixed methods study. Age Ageing 2019; 48:299-306. [PMID: 30615071 DOI: 10.1093/ageing/afy184] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/09/2018] [Revised: 09/06/2018] [Indexed: 11/12/2022] Open
Abstract
BACKGROUND Advance Care Planning (ACP) may prepare relatives of frail older patients for future decision-making. OBJECTIVE to investigate (1) how bereaved relatives of frail older patients experience ACP conversations and (2) whether ACP has an effect on relatives' preparation for decision-making and on their levels of anxiety and depression. DESIGN cluster randomised controlled trial. SETTING residential care homes in the Netherlands and community setting. SUBJECTS bereaved relatives of care home residents and community-dwelling frail older patients. METHODS we randomised 16 residential care homes to either the intervention group, where patient-participants were offered facilitated ACP, or the control group (n = 201), where they received 'care as usual'. If patient-participants died, we approached relatives for an interview. We asked relatives who had attended ACP conversations for their experience with ACP (open-ended questions). Furthermore, we compared relatives' preparation levels for decision-making and levels of anxiety and depression (HADS) between groups. This trial was registered (NTR4454). RESULTS we conducted interviews with 39/51 (76%) bereaved relatives (intervention group: n = 20, control group: n = 19). Relatives appreciated the ACP conversations. A few considered ACP redundant since they were already aware of the patients' preferences. Nine of 10 relatives in the intervention group felt adequately prepared for decision-making as compared to 5 of 11 relatives in the control group (P = 0.03). Relatives' levels of anxiety and depression did not differ significantly between groups. CONCLUSIONS in our study, bereaved relatives of frail older patients appreciated ACP. ACP positively affected preparedness for decision-making. It did not significantly affect levels of anxiety or depression.
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Affiliation(s)
- Anouk Overbeek
- Department of Public Health, Erasmus MC, University Medical Center Rotterdam, CA Rotterdam, The Netherlands
| | - Ida J Korfage
- Department of Public Health, Erasmus MC, University Medical Center Rotterdam, CA Rotterdam, The Netherlands
| | - Bernard J Hammes
- Respecting Choices, C-TAC Innovations, 600 Third Street North, Suite 101 La Crosse, WI, USA
| | - Agnes van der Heide
- Department of Public Health, Erasmus MC, University Medical Center Rotterdam, CA Rotterdam, The Netherlands
| | - Judith A C Rietjens
- Department of Public Health, Erasmus MC, University Medical Center Rotterdam, CA Rotterdam, The Netherlands
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Overbeek A, Polinder S, Haagsma J, Billekens P, de Nooijer K, Hammes BJ, Muliaditan D, van der Heide A, Rietjens JA, Korfage IJ. Advance Care Planning for frail older adults: Findings on costs in a cluster randomised controlled trial. Palliat Med 2019; 33:291-300. [PMID: 30269650 DOI: 10.1177/0269216318801751] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/15/2022]
Abstract
Background: Advance Care Planning aims at improving alignment of care with patients’ preferences. This may affect costs of medical care. Aim: To determine the costs of an Advance Care Planning programme and its effects on the costs of medical care and on concordance of care with patients’ preferences. Design/settings/participants: In a cluster randomised trial, 16 residential care homes were randomly allocated to the intervention group, where frail, older participants were offered facilitated Advance Care Planning conversations or to the control group. We calculated variable costs of Advance Care Planning per participant including personnel and travel costs of facilitators. Furthermore, we assessed participants’ healthcare use during 12 months applying a broad perspective (including medical care, inpatient days in residential care homes, home care) and calculated costs of care per participant. Finally, we investigated whether treatment goals were in accordance with preferences. Analyses were conducted for 97 participants per group. Trial registration number: NTR4454. Results: Average variable Advance Care Planning costs were €76 per participant. The average costs of medical care were not significantly different between the intervention and control group (€2360 vs €2235, respectively, p = 0.36). Costs of inpatient days in residential care homes (€41,551 vs €46,533) and of home care (€14,091 vs €17,361) were not significantly different either. Concordance of care with preferences could not be assessed since treatment goals were often not recorded. Conclusion: The costs of an Advance Care Planning programme were limited. Advance Care Planning did not significantly affect the costs of medical care for frail older adults.
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Affiliation(s)
- Anouk Overbeek
- 1 Department of Public Health, Erasmus MC, Rotterdam, The Netherlands
| | - Suzanne Polinder
- 1 Department of Public Health, Erasmus MC, Rotterdam, The Netherlands
| | - Juanita Haagsma
- 1 Department of Public Health, Erasmus MC, Rotterdam, The Netherlands
| | | | - Kim de Nooijer
- 1 Department of Public Health, Erasmus MC, Rotterdam, The Netherlands
| | | | - Daniel Muliaditan
- 1 Department of Public Health, Erasmus MC, Rotterdam, The Netherlands
| | | | | | - Ida J Korfage
- 1 Department of Public Health, Erasmus MC, Rotterdam, The Netherlands
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Ramos-Estebanez C, Kohen M, Pace J, Bozorgi A, Manjila S, Alambyan V, Nwankwo I, DeGeorgia M, Bambakidis NC, Orge F. Bedside optical coherence tomography for Terson's syndrome screening in acute subarachnoid hemorrhage: a pilot study. J Neurosurg 2019; 130:517-524. [PMID: 29393753 DOI: 10.3171/2017.7.jns171302] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/30/2017] [Accepted: 07/24/2017] [Indexed: 11/06/2022]
Abstract
OBJECTIVE Approximately 10% of patients with subarachnoid hemorrhage (SAH) become permanently, legally blind. The average cost of lifetime support and unpaid taxes for each blind person amounts to approximately $900,000. This study evaluates the feasibility and potential role of bedside optical coherence tomography (OCT) in Terson’s syndrome (TS) in patients with acute SAH (aSAH) and its potential role in blindness prevention. METHODS The authors conducted an open-label pilot study, in which 31 patients with an angiographic diagnosis of aSAH were first screened for TS with dilated funduscopy and then with OCT in the acute phase and at 6-week followup visits. Outpatient mood assessments (Patient Health Questionnaire–depression module, Hamilton Depression Scale), and quality of life general (NIH Patient-Reported Outcomes Measurement Information System) and visual scales (25-item National Eye Institute Visual Functioning Questionnaire) were measured at 1 and 6 weeks after discharge. Exclusion criteria included current or previous history of severe cataracts, severe diabetic retinopathy, severe macular degeneration, or glaucoma. RESULTS OCT identified 7 patients with TS, i.e., a 22.6% incidence in our aSAH sample: 7 in the acute phase, including a large retinal detachment that was initially missed by funduscopy and diagnosed by OCT in follow-up clinic. Dilated retinal funduscopy significantly failed to detect TS in 4 (57.1%) of these 7 cases. Intraventricular hemorrhage was significantly more common in TS cases (85.7% vs 25%). None of the participants experienced any complications from OCT examinations. Neither decreased quality of life visual scale scores nor a depressed mood correlated with objective OCT pathological findings at the 6-week follow-up after discharge. There were no significant mood differences between TS cases and controls. CONCLUSIONS OCT is the gold standard in retinal disease diagnosis. This pilot study shows that bedside OCT examination is feasible in aSAH. In this series, OCT was a safe procedure that enhanced TS detection by decreasing false-negative/inconclusive funduscopic examinations. It allows early diagnosis of macular holes and severe retinal detachments, which require acute surgical therapy to prevent legal blindness. In addition, OCT aids in ruling out potential false-positive visual deficits in individuals with a depressed mood at follow-up.
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Affiliation(s)
| | - Maryo Kohen
- 2Department of Ophthalmology, University Hospitals, Case Western Reserve University, Cleveland, Ohio
| | | | | | | | | | | | | | | | - Faruk Orge
- 2Department of Ophthalmology, University Hospitals, Case Western Reserve University, Cleveland, Ohio
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Erdal A, Flo E, Aarsland D, Ballard C, Slettebo DD, Husebo BS. Efficacy and Safety of Analgesic Treatment for Depression in People with Advanced Dementia: Randomised, Multicentre, Double-Blind, Placebo-Controlled Trial (DEP.PAIN.DEM). Drugs Aging 2018; 35:545-558. [PMID: 29725986 PMCID: PMC5999156 DOI: 10.1007/s40266-018-0546-2] [Citation(s) in RCA: 19] [Impact Index Per Article: 2.7] [Reference Citation Analysis] [Abstract] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/10/2023]
Abstract
Background Chronic pain and depression often co-occur, and pain may exacerbate depression in people with dementia. Objective The objective of this study was to assess the efficacy and safety of analgesic treatment for depression in nursing home patients with advanced dementia and clinically significant depressive symptoms. Methods We conducted a multicentre, parallel-group, double-blind, placebo-controlled trial in 47 nursing homes, including 162 nursing home patients aged ≥ 60 years with dementia (Mini-Mental State Examination ≤ 20) and depression (Cornell Scale for Depression in Dementia ≥ 8). Patients were randomised to receive active analgesic treatment (paracetamol or buprenorphine transdermal system) or identical placebo for 13 weeks. The main outcome measure was the change in depression (Cornell Scale for Depression in Dementia) from baseline to 13 weeks, assessed using linear mixed models with fixed effects for time, intervention and their interaction in the models. Secondary outcomes were to assess whether any change in depression was secondary to change in pain (Mobilisation-Observation-Behaviour-Intensity-Dementia-2 Pain Scale) and adverse events. Results The mean depression change was − 0.66 (95% confidence interval − 2.27 to 0.94) in the active group (n = 80) and − 3.30 (− 4.68 to −1.92) in the placebo group (n = 82). The estimated treatment effect was 2.64 (0.55–4.72, p = 0.013), indicating that analgesic treatment had no effect on depressive symptoms from baseline to 13 weeks while placebo appeared to ameliorate depressive symptoms. There was no significant reduction in pain in the active treatment group (paracetamol and buprenorphine combined) vs. placebo; however, a subgroup analysis demonstrated a significant reduction in pain for paracetamol vs. placebo [by − 1.11 (− 2.16 to − 0.06, p = 0.037)] from week 6 to 13 without a change in depression. Buprenorphine did not have significant effects on depression [3.04 (− 0.11 to 6.19), p = 0.059] or pain [0.47 (− 0.77 to 1.71), p = 0.456] from 0 to 13 weeks. Thirty-five patients were withdrawn from the study because of adverse reactions, deterioration or death: 25 (31.3%) during active treatment [23 (52.3%) who received buprenorphine], and ten (12.2%) in the placebo group. The most frequently occurring adverse events were psychiatric (17 adverse reactions) and neurological (14 adverse reactions). Conclusion Analgesic treatment did not reduce depression while placebo appeared to improve depressive symptoms significantly by comparison, possibly owing to the adverse effects of active buprenorphine. The risk of adverse events warrants caution when prescribing buprenorphine for people with advanced dementia. Trial registration ClinicalTrials.gov NCT02267057 (registered 7 July, 2014) and Norwegian Medicines Agency EudraCT 2013-002226-23. Electronic supplementary material The online version of this article (10.1007/s40266-018-0546-2) contains supplementary material, which is available to authorized users.
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Affiliation(s)
- Ane Erdal
- Department of Global Public Health and Primary Care, Centre for Elderly and Nursing Home Medicine, University of Bergen, Bergen, Norway.
| | - Elisabeth Flo
- Department of Clinical Psychology, University of Bergen, Bergen, Norway
| | - Dag Aarsland
- Department of Old Age Psychiatry, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK
| | | | - Dagrun D Slettebo
- Department of Global Public Health and Primary Care, Centre for Elderly and Nursing Home Medicine, University of Bergen, Bergen, Norway
| | - Bettina S Husebo
- Department of Global Public Health and Primary Care, Centre for Elderly and Nursing Home Medicine, University of Bergen, Bergen, Norway.,Department of Health and Care, Municipality of Bergen, Bergen, Norway
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Kiriaev O, Chacko E, Jurgens JD, Ramages M, Malpas P, Cheung G. Should capacity assessments be performed routinely prior to discussing advance care planning with older people? Int Psychogeriatr 2018; 30:1243-1250. [PMID: 29335033 DOI: 10.1017/s1041610217002836] [Citation(s) in RCA: 5] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/06/2022]
Abstract
ABSTRACTBackground:People with dementia receive worse end of life care compared to those with cancer. Barriers to undertaking advanced care planning (ACP) in people with dementia include the uncertainty about their capacity to engage in such discussions. The primary aim of this study was to compare the Advance Care Planning-Capacity Assessment Vignette tool (ACP-CAV) with a semi-structured interview adapted from the MacArthur Competence Assessment Tool-Treatment (MacCAT-T). The secondary aim was to identify demographic and cognitive functioning variables that may predict whether a person has capacity to discuss ACP. METHODS 32 older people (mean age = 84.1) with a Mini-Mental State Examination of 24 or above were recruited from two retirement villages in Auckland. Participants also completed Trail Making Test Part A & Part B and Geriatric Depression Scale (GDS-15) before undertaking the two capacity assessments that were video recorded to enable further analysis by four independent old age psychiatrists. RESULTS Using the MacCAT-T as the gold standard, over half (53.1%) of the participants were considered as lacking in capacity to engage in ACP. Participants struggled with the "Understanding ACP" domain the most. Capacity was not predictable by any of the demographic or cognitive functioning variables. When compared to the gold standard, ACP-CAV was accurate in assessing capacity in 68.8% of the cases. CONCLUSION Clinicians should routinely explain ACP to older people and ensure they fully understand it prior to an ACP discussion. If there is any concern about their understanding, further exploration and documentation of their capacity using the capacity assessment framework would be necessary. However, capacity assessment is a complex iterative process that does not easily lend itself to screening methodology and requires a high level of clinical judgment.
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Affiliation(s)
- Oleg Kiriaev
- Mental Health Services for Older People,Auckland District Health Board,New Zealand
| | - Emme Chacko
- Mental Health Services for Older People,Auckland District Health Board,New Zealand
| | | | - Meagan Ramages
- Mental Health Services for Older Adults,Waitemata District Health Board,New Zealand
| | - Phillipa Malpas
- Department of Psychological Medicine,The University of Auckland,New Zealand
| | - Gary Cheung
- Department of Psychological Medicine,The University of Auckland,New Zealand
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Lin CP, Cheng SY, Chen PJ. Advance Care Planning for Older People with Cancer and Its Implications in Asia: Highlighting the Mental Capacity and Relational Autonomy. Geriatrics (Basel) 2018; 3:E43. [PMID: 31011081 PMCID: PMC6319225 DOI: 10.3390/geriatrics3030043] [Citation(s) in RCA: 31] [Impact Index Per Article: 4.4] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/25/2018] [Revised: 07/15/2018] [Accepted: 07/18/2018] [Indexed: 11/18/2022] Open
Abstract
With dramatically increasing proportions of older people, global ageing has remarkably influenced healthcare services and policy making worldwide. Older people represent the majority of patients with cancer, leading to the increasing demand of healthcare due to more comorbidities and inherent frailty. The preference of older people with cancer are often ignored, and they are considered incapable of making choices for themselves, particularly medical decisions. This might impede the provision of their preferred care and lead to poor healthcare outcomes. Advance care planning (ACP) is considered an effective intervention to assist older people to think ahead and make a choice in accordance with their wishes when they possess capacity to do so. The implementation of ACP can potentially lead to positive impact for patients and families. However, the assessment of mental capacity among older adults with cancer might be a crucial concern when implementing ACP, as loss of mental capacity occurs frequently during disease deterioration and functional decline. This article aims to answer the following questions by exploring the existing evidence. How does ACP develop for older people with cancer? How can we measure mental capacity and what kind of principles for assessment we should apply? What are the facilitators and barriers when implementing an ACP in this population? Furthermore, a discussion about cultural adaptation and relevant legislation in Asia is elucidated for better understanding about its cultural appropriateness and the implications. Finally, recommendations in relation to early intervention with routine monitoring and examination of capacity assessment in clinical practice when delivering ACP, reconciling patient autonomy and family values by applying the concept of relational autonomy, and a corresponding legislation and public education should be in place in Asia. More research on ACP and capacity assessment in different cultural contexts and policy frameworks is highlighted as crucial factors for successful implementation of ACP.
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Affiliation(s)
- Cheng-Pei Lin
- Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London SE5 9PJ, UK.
| | - Shao-Yi Cheng
- Department of Family Medicine, College of Medicine and Hospital, National Taiwan University, Taipei 100, Taiwan.
| | - Ping-Jen Chen
- Department of Family Medicine, Kaohsiung Medical University Hospital, Kaohsiung Medical University, Kaohsiung 807, Taiwan.
- Department of Division of Geriatrics and Gerontology, Kaohsiung Medical University Hospital, Kaohsiung Medical University, Kaohsiung 807, Taiwan.
- Palliative Care Centre, Chi-Mei Medical Centre, Tainan 710, Taiwan.
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Overbeek A, Korfage IJ, Jabbarian LJ, Billekens P, Hammes BJ, Polinder S, Severijnen J, Swart SJ, Witkamp FE, van der Heide A, Rietjens JAC. Advance Care Planning in Frail Older Adults: A Cluster Randomized Controlled Trial. J Am Geriatr Soc 2018; 66:1089-1095. [PMID: 29608789 DOI: 10.1111/jgs.15333] [Citation(s) in RCA: 38] [Impact Index Per Article: 5.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/29/2022]
Abstract
OBJECTIVES To determine the effectiveness of advance care planning (ACP) in frail older adults. DESIGN Cluster randomized controlled trial. SETTING Residential care homes in the Netherlands (N=16). PARTICIPANTS Care home residents and community-dwelling adults receiving home care (N=201; n=101 intervention; n=100 control). Participants were 75 years and older, frail, and capable of consenting to participation. INTERVENTION Adjusted Respecting Choices ACP program. MEASUREMENTS The primary outcome was change in patient activation (Patient Activation Measure, PAM-13) between baseline and 12-month follow-up. Secondary outcomes included change in quality of life (SF-12), advance directive (AD) completion, and surrogate decision-maker appointment. Use of medical care in the 12 months after inclusion was also assessed. Multilevel analyses were performed, controlling for clustering effects and differences in demographics. RESULTS Seventy-seven intervention participants and 83 controls completed the follow-up assessment. There were no statistically significant differences between the intervention (-0.26±11.2) and control group (-1.43±10.6) in change scores of the PAM (p=.43) or the SF-12. Of intervention group participants, 93% completed an AD, and 94% appointed a decision-maker. Of control participants, 34% completed an AD, and 67% appointed a decision-maker (p<.001). No differences in the use of medical care were found. CONCLUSIONS ACP did not increase levels of patient activation or quality of life but did increase completion of ADs and appointment of surrogate decision-makers. It did not affect use of medical care.
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Affiliation(s)
- Anouk Overbeek
- Department of Public Health, Erasmus MC, Rotterdam, the Netherlands
| | - Ida J Korfage
- Department of Public Health, Erasmus MC, Rotterdam, the Netherlands
| | - Lea J Jabbarian
- Department of Public Health, Erasmus MC, Rotterdam, the Netherlands
| | | | - Bernard J Hammes
- Respecting Choices, C-TAC Innovations, La Crosse, Wisconsin, USA
| | - Suzanne Polinder
- Department of Public Health, Erasmus MC, Rotterdam, the Netherlands
| | | | | | - Frederika E Witkamp
- Department of Public Health, Erasmus MC, Rotterdam, the Netherlands.,Department of Medical Oncology, Erasmus MC Cancer Institute, Rotterdam, the Netherlands.,Research Centre Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, the Netherlands
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Tommasino C, Petrini C. Anaesthesiology and ethics: Can the anaesthesiologist ameliorate simply and rapidly the assessment of decision-making capacity in the elderly? Eur J Anaesthesiol 2018; 35:155-157. [PMID: 29381591 DOI: 10.1097/eja.0000000000000759] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 06/07/2023]
Affiliation(s)
- Concezione Tommasino
- From the Dental Anaesthesia Unit, Department of Biomedical, Surgical and Odontoiatric Sciences, University of Milano, ASST Santi Paolo e Carlo, Milano (CT) and Bioethics Unit, Istituto Superiore di Sanità (Italian National Institute of Health), Roma, Italy (CP)
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Papageorgiou SG, Voskou P, Economou A, Beratis I, Douzenis A. Testamentary Capacity Assessment Tool (TCAT): A Brief Instrument for Patients with Dementia. J Alzheimers Dis 2018; 61:985-994. [DOI: 10.3233/jad-170297] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/15/2022]
Affiliation(s)
- Sokratis G. Papageorgiou
- Cognitive Disorders/Dementia Unit, 2nd Department of Neurology, National and Kapodistrian University of Athens, Athens, Greece
| | - Panagiota Voskou
- Cognitive Disorders/Dementia Unit, 2nd Department of Neurology, National and Kapodistrian University of Athens, Athens, Greece
| | - Alexandra Economou
- Department of Psychology, School of Philosophy, National and Kapodistrian University of Athens, Athens, Greece
| | - Ion Beratis
- Cognitive Disorders/Dementia Unit, 2nd Department of Neurology, National and Kapodistrian University of Athens, Athens, Greece
| | - Athanasios Douzenis
- 2nd Department of Psychiatry, National and Kapodistrian University of Athens, Athens, Greece
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Overbeek A, Rietjens JAC, Jabbarian LJ, Severijnen J, Swart SJ, van der Heide A, Korfage IJ. Low patient activation levels in frail older adults: a cross-sectional study. BMC Geriatr 2018; 18:7. [PMID: 29304752 PMCID: PMC5756388 DOI: 10.1186/s12877-017-0696-9] [Citation(s) in RCA: 22] [Impact Index Per Article: 3.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/14/2017] [Accepted: 12/19/2017] [Indexed: 11/26/2022] Open
Abstract
Background Frail older adults are increasingly expected to self-manage their health and healthcare. We assessed the extent to which this group is able to take up this responsibility by measuring their level of activation as patients (i.e. their knowledge, skills and confidence to self-manage their health and healthcare). Further, we studied which characteristics of older adults were associated with patient activation. Methods In this cross-sectional study 200 frail, competent adults (median age 87 years) participated. Participants were community-dwelling adults who received home care and residents of care homes. Data were collected via personal interviews in participants’ homes. The main outcome measure was patient activation assessed by the short version of the Patient Activation Measure (PAM-13; range: 0–100). The PAM distinguishes four levels of increasing activation with level 1 indicating poor patient activation and level 4 adequate patient activation. Other studied variables were: multimorbidity, type of residency, frailty (Tilburg Frailty Index), mental competence (Mini Mental State Examination), health-related quality of life (SF-12), satisfaction with healthcare (subscale Patient Satisfaction Questionnaire) and personal characteristics (age, gender, marital status, educational level). Regression analyses were performed to investigate which variables were associated with patient activation. Results Participants had a median PAM score of 51. Thirty-nine percent had level 1 activation, 31% level 2, 26% level 3 and 5% level 4. Fifty-nine percent of community dwelling adults had level 1 or 2 activation versus 81% of care home residents (p = 0.007). Mental competence (Effect: 0.52, CI: 0.03–1.01, p = 0.04) and health-related quality of life (Effect: 0.15, CI: 0.01–0.30, p = 0.04 for physical health; Effect: 0.20, CI: 0.07–0.34, p = 0.003 for mental health) were positively associated with patient activation. Frailty (Effect: -1.06, CI: -1.75 – -0.36, p = 0.003) was negatively associated with patient activation. Conclusions The majority of this frail and very old study population, especially those with a lower health-related quality of life, may be unable to self-manage their health and healthcare to the level expected from them. The increasing population of frail older adults may need help in managing their health and healthcare.
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Affiliation(s)
- Anouk Overbeek
- Department of Public Health, Erasmus MC, PO Box 2040, 3000, CA, Rotterdam, the Netherlands.
| | - Judith A C Rietjens
- Department of Public Health, Erasmus MC, PO Box 2040, 3000, CA, Rotterdam, the Netherlands
| | - Lea J Jabbarian
- Department of Public Health, Erasmus MC, PO Box 2040, 3000, CA, Rotterdam, the Netherlands
| | | | | | - Agnes van der Heide
- Department of Public Health, Erasmus MC, PO Box 2040, 3000, CA, Rotterdam, the Netherlands
| | - Ida J Korfage
- Department of Public Health, Erasmus MC, PO Box 2040, 3000, CA, Rotterdam, the Netherlands
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