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

CMAJ

Volumn 186, Issue 18, 2014, Pages E679-E687

  You, John J ^a   Dodek, Peter ^b,c   Lamontagne, Francois ^d   Downar, James ^e   Sinuff, Tasnim ^e,f   Jiang, Xuran ^g   Day, Andrew G ^g   Heyland, Daren K ^g,h  

^a MCMASTER UNIVERSITY   (Canada)

^b ST PAUL S HOSPITAL   (Canada)

^c UNIVERSITY OF BRITISH COLUMBIA   (Canada)

^d CENTRE HOSPITALIER UNIVERSITAIRE DE SHERBROOKE   (Canada)

^e UNIVERSITY OF TORONTO   (Canada)

^f Sunnybrook Health Sciences Centre   (Canada)

^g KINGSTON GENERAL HOSPITAL   (Canada)

^h QUEEN S UNIVERSITY   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; ARTICLE; CANADA; CLINICAL DECISION MAKING; CONTROLLED STUDY; CROSS-SECTIONAL STUDY; DOCTOR PATIENT RELATION; FEAR; FEMALE; HUMAN; MAJOR CLINICAL STUDY; MALE; PATIENT PREFERENCE; PATIENT SATISFACTION; PRACTICE GUIDELINE; PROGNOSIS; QUESTIONNAIRE; TERMINAL CARE; TREATMENT PLANNING; ATTITUDE; FAMILY; HOSPITAL; MIDDLE AGED; PSYCHOLOGY; SEVERITY OF ILLNESS INDEX; VERY ELDERLY;

ADULT; AGED; AGED, 80 AND OVER; ATTITUDE; CROSS-SECTIONAL STUDIES; FAMILY; FEMALE; HOSPITALS; HUMANS; MALE; MIDDLE AGED; PATIENT PREFERENCE; SEVERITY OF ILLNESS INDEX; SURVEYS AND QUESTIONNAIRES; TERMINAL CARE;

EID: 84918828054     PISSN: 08203946     EISSN: 14882329     Source Type: Journal    
DOI: 10.1503/cmaj.140673     Document Type: Article

References (23)

1. Heyland DK, Lavery JV, Tranmer JE, et al. Dying in Canada: is it an institutionalized, technologically supported experience? J Palliat Care 2000;16(Suppl):S10-6.
2. Heyland DK, Lavery JV, Tranmer J, et al. The final days: an analysis of the dying experience in Ontario. Ann R Coll Physicians Surg Can 2000;33:356-61.
3. Health Care Use at the End of Life in Western Canada. Ottawa: Canadian Institute for Health Information; 2007.
4. Health Care Use at the End of Life in Atlantic Canada. Ottawa: Canadian Institute for Health Information; 2011.
5. Ehlenbach WJ, Barnato AE, Curtis JR, et al. Epidemiologic study of in-hospital cardiopulmonary resuscitation in the elderly. N Engl J Med 2009;361:22-31.
6. Gruneir A, Mor V, Weitzen S, et al. Where people die: a multilevel approach to understanding influences on site of death in America. Med Care Res Rev 2007;64:351-78.
7. Cook D, Rocker G, Marshall J, et al; Level of Care Study Investigators and the Canadian Critical Care Trials Group. Withdrawal of mechanical ventilation in anticipation of death in the intensive care unit. N Engl J Med 2003;349:1123-32.
8. Heyland DK, Barwich D, Pichora D, et al; ACCEPT (Advance Care Planning Evaluation in Elderly Patients) Study Team; Canadian Researchers at the End of Life Network (CARENET). Failure to engage seriously ill hospitalized patients and their families in advance care planning: results of a multicenter prospective study. JAMA Intern Med 2013;173:778-87.
9. Heyland DK, Cook DJ, Rocker GM, et al; Canadian Researchers at the End of Life Network (CARENET). Defining priorities for improving end-of-life care in Canada. CMAJ 2010;182: E747-52.
10. Heyland DK, Dodek P, Rocker G, et al; Canadian Researchers at the End of Life Network (CARENET).What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ 2006;174:627-33.
11. Sinuff T, Dodek P, You JJ et al. Improving end-of-life communication and decision-making: the development of a conceptual framework and quality indicators [manuscript in submission]
12. Advance Care Planning.Concise Guidance to Good Practice Series, No 12. London (UK): Royal College of Physicians; National Council for Palliative Care; British Society of Rehabilitation Medicine; British Geriatrics Society; Alzheimer's Society; Royal College of Nursing; Royal College of Psychiatrists; Help the Aged; Royal College of General Practitioners; 2009.
13. Harle I, Johnston J, Mackay J, et al. Advance Care Planning with Cancer Patients: Evidentiary Base. Toronto: Program in Evidence-Based Care; Cancer Care Ontario; 2008.
14. Clayton JM, Hancock KM, Butow PN et al. 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. Med J Aust 2007;186:S77,S79,S83-108.
15. Heyland DK, Pichora D, Dodek P, et al. The development and validation of a questionnaire to audit advance care planning. J Palliat Care Med 2012;2:119.
16. Heyland DK, Cook DJ, Rocker GM, et al; Canadian Researchers at the End of Life Network. 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. Palliat Med 2010;24:682-95.
17. Cohen J. A coefficient of agreement for nominal scales. Educ Psychol Meas 1960;20:37-46.
18. Rockwood K, Song X, MacKnight C, et al. A global clinical measure of fitness and frailty in elderly people. CMAJ 2005; 173: 489-95.
19. You JJ, Fowler RA, Heyland DK; Canadian Researchers at the End of Life Network (CARENET). Just ask: discussing goals of care with patients in hospital with serious illness. CMAJ 2014; 186:425-32.
20. Heyland DK, Allan DE, Rocker G, et al; Canadian Researchers at the End of Life Network. Discussing prognosis with patients and their families near the end of life: impact on satisfaction with end-of-life care. Open Med 2009;3:e101-10.
21. 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. JAMA 1995;274:1591-8.
22. Johnstone MJ, Kanitsaki O. Ethics and advance care planning in a culturally diverse society. J Transcult Nurs 2009;20:405-16.
23. Con A. Cross-cultural considerations in promoting advance care planning in Canada. Vancouver: BC Cancer Agency; 2008.