Literature DB >> 25367427

What really matters in end-of-life discussions? Perspectives of patients in hospital with serious illness and their families.

John J You1, Peter Dodek2, Francois Lamontagne2, James Downar2, Tasnim Sinuff2, Xuran Jiang2, Andrew G Day2, Daren K Heyland2.   

Abstract

BACKGROUND: The guideline-recommended elements to include in discussions about goals of care with patients with serious illness are mostly based on expert opinion. We sought to identify which elements are most important to patients and their families.
METHODS: We used a cross-sectional study design involving patients from 9 Canadian hospitals. We asked older adult patients with serious illness and their family members about the occurrence and importance of 11 guideline-recommended elements of goals-of-care discussions. In addition, we assessed concordance between prescribed goals of care and patient preferences, and we measured patient satisfaction with goals-of-care discussions using the Canadian Health Care Evaluation Project (CANHELP) questionnaire.
RESULTS: Our study participants included 233 patients (mean age 81.2 yr) and 205 family members (mean age 60.2 yr). Participants reported that clinical teams had addressed individual elements of goals-of-care discussions infrequently (range 1.4%-31.7%). Patients and family members identified the same 5 elements as being the most important to address: preferences for care in the event of life-threatening illness, values, prognosis, fears or concerns, and questions about goals of care. Addressing more elements was associated with both greater concordance between patients' preferences and prescribed goals of care, and greater patient satisfaction.
INTERPRETATION: We identified elements of goals-of-care discussions that are most important to older adult patients in hospital with serious illness and their family members. We found that guideline-recommended elements of goals-of-care discussions are not often addressed by health care providers. Our results can inform interventions to improve the determination of goals of care in the hospital setting.
© 2014 Canadian Medical Association or its licensors.

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Year:  2014        PMID: 25367427      PMCID: PMC4259796          DOI: 10.1503/cmaj.140673

Source DB:  PubMed          Journal:  CMAJ        ISSN: 0820-3946            Impact factor:   8.262


  15 in total

1.  Dying in Canada: is it an institutionalized, technologically supported experience?

Authors:  D K Heyland; J V Lavery; J E Tranmer; S E Shortt; S J Taylor
Journal:  J Palliat Care       Date:  2000-10       Impact factor: 2.250

2.  Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers.

Authors:  Josephine M Clayton; Karen M Hancock; Phyllis N Butow; Martin H N Tattersall; David C Currow; Jonathan Adler; Sanchia Aranda; Kirsten Auret; Fran Boyle; Annette Britton; Richard Chye; Katy Clark; Patricia Davidson; Jan Maree Davis; Afaf Girgis; Sara Graham; Janet Hardy; Kate Introna; John Kearsley; Ian Kerridge; Linda Kristjanson; Peter Martin; Amanda McBride; Anne Meller; Geoffrey Mitchell; Alison Moore; Beverley Noble; Ian Olver; Sharon Parker; Matthew Peters; Peter Saul; Cameron Stewart; Lyn Swinburne; Bernadette Tobin; Kathryn Tuckwell; Patsy Yates
Journal:  Med J Aust       Date:  2007-06-18       Impact factor: 7.738

3.  Improving End-of-Life Communication and Decision Making: The Development of a Conceptual Framework and Quality Indicators.

Authors:  Tasnim Sinuff; Peter Dodek; John J You; Doris Barwich; Carolyn Tayler; James Downar; Michael Hartwick; Christopher Frank; Henry T Stelfox; Daren K Heyland
Journal:  J Pain Symptom Manage       Date:  2015-01-24       Impact factor: 3.612

4.  What matters most in end-of-life care: perceptions of seriously ill patients and their family members.

Authors:  Daren K Heyland; Peter Dodek; Graeme Rocker; Dianne Groll; Amiram Gafni; Deb Pichora; Sam Shortt; Joan Tranmer; Neil Lazar; Jim Kutsogiannis; Miu Lam
Journal:  CMAJ       Date:  2006-02-28       Impact factor: 8.262

5.  Failure to engage hospitalized elderly patients and their families in advance care planning.

Authors:  Daren K Heyland; Doris Barwich; Deb Pichora; Peter Dodek; Francois Lamontagne; John J You; Carolyn Tayler; Pat Porterfield; Tasnim Sinuff; Jessica Simon
Journal:  JAMA Intern Med       Date:  2013-05-13       Impact factor: 21.873

6.  The development and validation of a novel questionnaire to measure patient and family satisfaction with end-of-life care: the Canadian Health Care Evaluation Project (CANHELP) Questionnaire.

Authors:  Daren K Heyland; Deborah J Cook; Graeme M Rocker; Peter M Dodek; Demetrios J Kutsogiannis; Yoanna Skrobik; Xuran Jiang; Andrew G Day; S Robin Cohen
Journal:  Palliat Med       Date:  2010-07-06       Impact factor: 4.762

7.  A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators.

Authors: 
Journal:  JAMA       Date:  1995 Nov 22-29       Impact factor: 56.272

8.  Epidemiologic study of in-hospital cardiopulmonary resuscitation in the elderly.

Authors:  William J Ehlenbach; Amber E Barnato; J Randall Curtis; William Kreuter; Thomas D Koepsell; Richard A Deyo; Renee D Stapleton
Journal:  N Engl J Med       Date:  2009-07-02       Impact factor: 91.245

9.  Withdrawal of mechanical ventilation in anticipation of death in the intensive care unit.

Authors:  Deborah Cook; Graeme Rocker; John Marshall; Peter Sjokvist; Peter Dodek; Lauren Griffith; Andreas Freitag; Joseph Varon; Christine Bradley; Mitchell Levy; Simon Finfer; Cindy Hamielec; Joseph McMullin; Bruce Weaver; Stephen Walter; Gordon Guyatt
Journal:  N Engl J Med       Date:  2003-09-18       Impact factor: 91.245

10.  Discussing prognosis with patients and their families near the end of life: impact on satisfaction with end-of-life care.

Authors:  Daren K Heyland; Diane E Allan; Graeme Rocker; Peter Dodek; Deb Pichora; Amiram Gafni
Journal:  Open Med       Date:  2009-06-16
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  40 in total

Review 1.  How to discuss goals of care with patients.

Authors:  Shannon M Dunlay; Jacob J Strand
Journal:  Trends Cardiovasc Med       Date:  2015-04-03       Impact factor: 6.677

2.  Giving Voice to Patient Values Throughout Cancer: A Novel Nurse-Led Intervention.

Authors:  Andrew S Epstein; Anjali V Desai; Camila Bernal; Danielle Romano; Peter J Wan; Molly Okpako; Kelly Anderson; Kimberly Chow; Dana Kramer; Claudia Calderon; Virginia V Klimek; Robin Rawlins-Duell; Diane L Reidy; Jessica I Goldberg; Elizabeth Cruz; Judith E Nelson
Journal:  J Pain Symptom Manage       Date:  2019-04-26       Impact factor: 3.612

3.  Gaps in public preparedness to be a substitute decision-maker and the acceptability of high school education on resuscitation and end-of-life care: a mixed-methods study.

Authors:  Michael K Y Wong; Maria Cassandre Medor; Katerina Yelle Labre; Mengzhu Jiang; Jason R Frank; Lisa M Fischer; Warren J Cheung
Journal:  CMAJ Open       Date:  2019-09-16

4.  A novel decision aid to help plan for serious illness: a multisite randomized trial.

Authors:  Daren K Heyland; Rebecca Heyland; Alice Bailey; Michelle Howard
Journal:  CMAJ Open       Date:  2020-04-28

5.  [A German version of the Palliative Performance Scale (PPS) as a supportive structure to assess survival in palliative patients].

Authors:  Veronika Mosich; Martin Andersag; Herbert Watzke
Journal:  Wien Med Wochenschr       Date:  2019-11-14

Review 6.  Quality of clinicians' conversations with patients and families before and after implementation of the Serious Illness Care Program in a hospital setting: a retrospective chart review study.

Authors:  Christina Ma; Lauren E Riehm; Rachelle Bernacki; Joanna Paladino; John J You
Journal:  CMAJ Open       Date:  2020-06-19

7.  Effects of a Personalized Web-Based Decision Aid for Surrogate Decision Makers of Patients With Prolonged Mechanical Ventilation: A Randomized Clinical Trial.

Authors:  Christopher E Cox; Douglas B White; Catherine L Hough; Derek M Jones; Jeremy M Kahn; Maren K Olsen; Carmen L Lewis; Laura C Hanson; Shannon S Carson
Journal:  Ann Intern Med       Date:  2019-01-29       Impact factor: 25.391

8.  Concordance Between Proxy Level of Care Preference and Advance Directives Among Nursing Home Residents With Advanced Dementia: A Cluster Randomized Clinical Trial.

Authors:  Simon M Cohen; Angelo E Volandes; Michele L Shaffer; Laura C Hanson; Daniel Habtemariam; Susan L Mitchell
Journal:  J Pain Symptom Manage       Date:  2018-09-29       Impact factor: 3.612

9.  Older patient engagement in advance care planning in Canadian primary care practices: Results of a multisite survey.

Authors:  Michelle Howard; Carrie Bernard; Doug Klein; Amy Tan; Marissa Slaven; Doris Barwich; John J You; Gabriel Asselin; Jessica Simon; Daren K Heyland
Journal:  Can Fam Physician       Date:  2018-05       Impact factor: 3.275

10.  Improving ICU-Based Palliative Care Delivery: A Multicenter, Multidisciplinary Survey of Critical Care Clinician Attitudes and Beliefs.

Authors:  Nicholas G Wysham; May Hua; Catherine L Hough; Stephanie Gundel; Sharron L Docherty; Derek M Jones; Owen Reagan; Haley Goucher; Jessica Mcfarlin; Christopher E Cox
Journal:  Crit Care Med       Date:  2017-04       Impact factor: 7.598

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