Literature DB >> 28084575

Ethical Concerns and Procedural Pathways for Patients Who are Incapacitated and Alone: Implications from a Qualitative Study for Advancing Ethical Practice.

Jennifer Moye1, Casey Catlin2,3, Jennifer Kwak2, Erica Wood4, Pamela B Teaster5.   

Abstract

Adults who are incapacitated and alone, having no surrogates, may be known as "unbefriended." Decision-making for these particularly vulnerable patients is a common and vexing concern for healthcare providers and hospital ethics committees. When all other avenues for resolving the need for surrogate decision-making fail, patients who are incapacitated and alone may be referred for "public guardianship" or guardianship of last resort. While an appropriate mechanism in theory, these programs are often under-staffed and under-funded, laying the consequences of inadequacies on the healthcare system and the patient him or herself. We describe a qualitative study of professionals spanning clinical, court, and agency settings about the mechanisms for resolving surrogate consent for these patients and problems therein within the state of Massachusetts. Interviews found that all participants encountered adults who are incapacitated and without surrogates. Four approaches for addressing surrogate needs were: (1) work to restore capacity; (2) find previously unknown surrogates; (3) work with agencies to obtain surrogates; and (4) access the guardianship system. The use of guardianship was associated with procedural challenges and ethical concerns including delays in care, short term gains for long term costs, inabilities to meet a patient's values and preferences, conflicts of interest, and ethical discomfort among interviewees. Findings are discussed in the context of resources to restore capacity, identify previously unknown surrogates, and establish improved surrogate mechanisms for this vulnerable population.

Entities:  

Keywords:  Ethics; Guardianship; Healthcare providers; Incapacitated adults; Surrogates; Unbefriended

Mesh:

Year:  2017        PMID: 28084575      PMCID: PMC5541945          DOI: 10.1007/s10730-016-9317-9

Source DB:  PubMed          Journal:  HEC Forum        ISSN: 0956-2737


  14 in total

1.  Wishard Volunteer Advocates Program: an intervention for at-risk, incapacitated, unbefriended adults.

Authors:  Robin Bandy; Greg A Sachs; Kianna Montz; Lev Inger; Robert W Bandy; Alexia M Torke
Journal:  J Am Geriatr Soc       Date:  2014-10-30       Impact factor: 5.562

2.  Legal briefing: The unbefriended: making healthcare decisions for patients without surrogates (Part 2).

Authors:  Thaddeus Mason Pope; Tanya Sellers
Journal:  J Clin Ethics       Date:  2012

3.  Medical decision-making during the guardianship process for incapacitated, hospitalized adults: a descriptive cohort study.

Authors:  Robin J Bandy; Paul R Helft; Robert W Bandy; Alexia M Torke
Journal:  J Gen Intern Med       Date:  2010-04-27       Impact factor: 5.128

4.  Decisions to limit life-sustaining treatment for critically ill patients who lack both decision-making capacity and surrogate decision-makers.

Authors:  Douglas B White; J Randall Curtis; Bernard Lo; John M Luce
Journal:  Crit Care Med       Date:  2006-08       Impact factor: 7.598

Review 5.  Lost in translation: the unintended consequences of advance directive law on clinical care.

Authors:  Lesley S Castillo; Brie A Williams; Sarah M Hooper; Charles P Sabatino; Lois A Weithorn; Rebecca L Sudore
Journal:  Ann Intern Med       Date:  2011-01-18       Impact factor: 25.391

6.  Using a Values Discussion Guide to facilitate communication in advance care planning.

Authors:  Michele J Karel; Jean Powell; Michael D Cantor
Journal:  Patient Educ Couns       Date:  2004-10

7.  The physician-surrogate relationship.

Authors:  Alexia M Torke; G Caleb Alexander; John Lantos; Mark Siegler
Journal:  Arch Intern Med       Date:  2007-06-11

8.  Who should Decide for the Unrepresented?

Authors:  Andrew Courtwright; Emily Rubin
Journal:  Bioethics       Date:  2015-08-26       Impact factor: 1.898

9.  Life support for patients without a surrogate decision maker: who decides?

Authors:  Douglas B White; J Randall Curtis; Leslie E Wolf; Thomas J Prendergast; Darren B Taichman; Gary Kuniyoshi; Frank Acerra; Bernard Lo; John M Luce
Journal:  Ann Intern Med       Date:  2007-07-03       Impact factor: 25.391

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  7 in total

1.  "I worry about this patient EVERY day": Geriatrics Clinicians' Challenges in Caring for Unrepresented Older Adults.

Authors:  Kara B Dassel; Linda S Edelman; Jennifer Moye; Casey Catlin; Timothy W Farrell
Journal:  J Appl Gerontol       Date:  2021-08-31

2.  Ethical Challenges in Caring for Unrepresented Adults: A Qualitative Study of Key Stakeholders.

Authors:  Aradhana Verma; Alexander K Smith; Krista L Harrison; Anna H Chodos
Journal:  J Am Geriatr Soc       Date:  2019-05-06       Impact factor: 5.562

3.  Caring for Unbefriended Older Adults and Adult Orphans: A Clinician Survey.

Authors:  Timothy W Farrell; Casey Catlin; Anna H Chodos; Aanand D Naik; Eric Widera; Jennifer Moye
Journal:  Clin Gerontol       Date:  2019-07-15       Impact factor: 2.871

4.  Unrepresented Adults Face Adverse Healthcare Consequences: The Role of Guardians, Public Guardianship Reform, and Alternative Policy Solutions.

Authors:  Casey C Catlin; Heather L Connors; Pamela B Teaster; Erica Wood; Zachary S Sager; Jennifer Moye
Journal:  J Aging Soc Policy       Date:  2021-01-18

5.  The Cost of Medically Unnecessary Days Due to Waiting for Guardianship in a State Acute Hospital System.

Authors:  Patricia Brierley-Bowers; Heather Connors; Joanne Tompkins; Peter M Macy
Journal:  Inquiry       Date:  2022 Jan-Dec       Impact factor: 1.730

6.  End-of-Life Care for Persons Under Guardianship.

Authors:  Jennifer Moye; Kelly Stolzmann; Elizabeth J Auguste; Andrew B Cohen; Casey C Catlin; Zachary S Sager; Rachel E Weiskittle; Cindy B Woolverton; Heather L Connors; Jennifer L Sullivan
Journal:  J Pain Symptom Manage       Date:  2020-11-16       Impact factor: 5.576

7.  Making Medical Treatment Decisions for Unrepresented Patients in the ICU. An Official American Thoracic Society/American Geriatrics Society Policy Statement.

Authors:  Thaddeus M Pope; Joshua Bennett; Shannon S Carson; Lynette Cederquist; Andrew B Cohen; Erin S DeMartino; David M Godfrey; Paula Goodman-Crews; Marshall B Kapp; Bernard Lo; David C Magnus; Lynn F Reinke; Jamie L Shirley; Mark D Siegel; Renee D Stapleton; Rebecca L Sudore; Anita J Tarzian; J Daryl Thornton; Mark R Wicclair; Eric W Widera; Douglas B White
Journal:  Am J Respir Crit Care Med       Date:  2020-05-15       Impact factor: 21.405

  7 in total

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