Literature DB >> 19269928

Surrogate decision makers' understanding of dementia patients' prior wishes for end-of-life care.

Betty S Black1, Linda A Fogarty, Hilary Phillips, Thomas Finucane, David J Loreck, Alva Baker, David M Blass, Peter V Rabins.   

Abstract

OBJECTIVE: This study examines how surrogate decision makers for dementia patients developed an understanding of patient preferences about end-of-life (EOL) care and patient wishes.
METHODS: Semistructured interviews were conducted with 34 surrogate decision makers for hospice-eligible nursing home patients with dementia. The data were content analyzed.
RESULTS: Most surrogates reported that patients had previously completed an advance directive (59%), discussed preferences for EOL care (56%), or done both (38%). Catalysts for and barriers to completing an advance directive or having EOL care discussions included factors that were both intrinsic and extrinsic to the patient. The most commonly reported wish for EOL care was to not be kept alive by "machines" or "extraordinary measures." DISCUSSION: Health care providers may be able to assist patients and families by normalizing discussions of dying, encouraging advance care planning, helping them identify goals for EOL care, and providing information to support treatment decisions consistent with patients' wishes.

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Year:  2009        PMID: 19269928      PMCID: PMC2832743          DOI: 10.1177/0898264309333316

Source DB:  PubMed          Journal:  J Aging Health        ISSN: 0898-2643


  32 in total

1.  Communicating end-of-life preferences.

Authors:  Deborah Dillon McDonald; Jo-Ann Deloge; Nicole Joslin; Wendy A Petow; Judith S Severson; Roberta Votino; Michael D Shea; Jessica M L Drenga; Mary T Brennan; Andrea B Moran; Enrico Del Signore
Journal:  West J Nurs Res       Date:  2003-10       Impact factor: 1.967

2.  Planning end-of-life care for patients with dementia: roles of families and health professionals.

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4.  Do advance directives provide instructions that direct care? SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment.

Authors:  J M Teno; S Licks; J Lynn; N Wenger; A F Connors; R S Phillips; M A O'Connor; D P Murphy; W J Fulkerson; N Desbiens; W A Knaus
Journal:  J Am Geriatr Soc       Date:  1997-04       Impact factor: 5.562

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Journal:  J Am Geriatr Soc       Date:  1995-04       Impact factor: 5.562

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Journal:  Res Nurs Health       Date:  1995-04       Impact factor: 2.228

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Authors:  Carolyn E Schwartz; H Brownell Wheeler; Bernard Hammes; Noreen Basque; Jean Edmunds; George Reed; Yunsheng Ma; Lynn Li; Patricia Tabloski; Julianne Yanko
Journal:  Arch Intern Med       Date:  2002-07-22

9.  Planning for death but not serious future illness: qualitative study of housebound elderly patients.

Authors:  Joseph A Carrese; Jamie L Mullaney; Ruth R Faden; Thomas E Finucane
Journal:  BMJ       Date:  2002-07-20

10.  Knowledge, attitudes, and behavior of elderly persons regarding living wills.

Authors:  E R Gamble; P J McDonald; P R Lichstein
Journal:  Arch Intern Med       Date:  1991-02
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  17 in total

1.  Advance care treatment plan (ACT-Plan) for African American family caregivers: a pilot study.

Authors:  Gloria J Bonner; Edward Wang; Diana J Wilkie; Carol E Ferrans; Barbara Dancy; Yashika Watkins
Journal:  Dementia (London)       Date:  2012-07-02

Review 2.  Withholding, discontinuing and withdrawing medications in dementia patients at the end of life: a neglected problem in the disadvantaged dying?

Authors:  Carole Parsons; Carmel M Hughes; A Peter Passmore; Kate L Lapane
Journal:  Drugs Aging       Date:  2010-06-01       Impact factor: 3.923

3.  Relationship among Trust in Physicians, Demographics, and End-of-life Treatment Decisions Made by African American Dementia Caregivers.

Authors:  Yashika J Watkins; Gloria J Bonner; Edward Wang; Diana J Wilkie; Carol E Ferrans; Barbara Dancy
Journal:  J Hosp Palliat Nurs       Date:  2012-05-01       Impact factor: 1.918

4.  Goals-of-Care Conversations for Older Adults With Serious Illness in the Emergency Department: Challenges and Opportunities.

Authors:  Kei Ouchi; Naomi George; Jeremiah D Schuur; Emily L Aaronson; Charlotta Lindvall; Edward Bernstein; Rebecca L Sudore; Mara A Schonberg; Susan D Block; James A Tulsky
Journal:  Ann Emerg Med       Date:  2019-02-13       Impact factor: 5.721

5.  Values and preferences of individuals with dementia: perceptions of family caregivers over time.

Authors:  Allison M Reamy; Kyungmin Kim; Steven H Zarit; Carol J Whitlatch
Journal:  Gerontologist       Date:  2012-08-16

6.  Factors related to establishing a comfort care goal in nursing home patients with dementia: a cohort study among family and professional caregivers.

Authors:  Mirjam C van Soest-Poortvliet; Jenny T van der Steen; Henrica C W de Vet; Cees M P M Hertogh; Bregje D Onwuteaka-Philipsen; Luc H J Deliens
Journal:  J Palliat Med       Date:  2014-12       Impact factor: 2.947

Review 7.  Determining medical decision-making capacity in brain tumor patients: why and how?

Authors:  Andrea Pace; Johan A F Koekkoek; Martin J van den Bent; Helen J Bulbeck; Jane Fleming; Robin Grant; Heidrun Golla; Roger Henriksson; Simon Kerrigan; Christine Marosi; Ingela Oberg; Stefan Oberndorfer; Kathy Oliver; H Roeline W Pasman; Emilie Le Rhun; Alasdair G Rooney; Roberta Rudà; Simone Veronese; Tobias Walbert; Michael Weller; Wolfgang Wick; Martin J B Taphoorn; Linda Dirven
Journal:  Neurooncol Pract       Date:  2020-07-16

8.  Does it Matter Who Decides? Outcomes of Surrogate Decision-Making for Community-Dwelling, Cognitively Impaired Older Adults Near the End of Life.

Authors:  Micah Y Baum; Joseph J Gallo; Marie T Nolan; Kenneth M Langa; Scott D Halpern; Mario Macis; Lauren Hersch Nicholas
Journal:  J Pain Symptom Manage       Date:  2021-06-19       Impact factor: 3.612

9.  End-of-life care communications and shared decision-making in Norwegian nursing homes--experiences and perspectives of patients and relatives.

Authors:  Elisabeth Gjerberg; Lillian Lillemoen; Reidun Førde; Reidar Pedersen
Journal:  BMC Geriatr       Date:  2015-08-19       Impact factor: 3.921

10.  Identification of the palliative phase in people with dementia: a variety of opinions between healthcare professionals.

Authors:  Jasper van Riet Paap; Elena Mariani; Rabih Chattat; Raymond Koopmans; Hélène Kerhervé; Wojciech Leppert; Maria Forycka; Lukas Radbruch; Birgit Jaspers; Kris Vissers; Myrra Vernooij-Dassen; Yvonne Engels
Journal:  BMC Palliat Care       Date:  2015-11-04       Impact factor: 3.234

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