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The Quality Of Dying And Death: Is It Ready For Use As An Outcome Measure?

J. Randall Curtis, Lois Downey, Ruth A. Engelberg
Published 2013 · Medicine
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phase after the 2011 great East Japan earthquake: pneumonia as a signifi cant reason for hospital care. and Escherichia coli lung infection after a tsunami disaster. If you can't measure it, you can't improve it. Not everything that counts can be measured. Not everything that can be measured counts. T he juxtaposition of these two quotes is not novel, but it is particularly appropriate for a discussion of measuring the quality of dying and death. The quote by Lord Kelvin captures the challenge that gave rise to efforts to develop a measure of the quality of dying and death. In the past 3 decades, landmark studies highlighted the poor quality of end-of-life care, with many patients dying with signifi cant pain and other symptoms while receiving a high intensity of life-sustaining treatments they did not want, and families often were left with tremendous emotional and fi nancial burdens. 1-4 As a result of these fi ndings, and in line with Lord Kelvin's adage, efforts arose to develop accurate measures of the quality of the dying experience. The Quality of Dying and Death (QODD) questionnaire was one such measure developed from a conceptual model that separated the following three related concepts: the quality of end-of-life care, the quality of life at the end of life, and the quality of dying and death. 5 In the 1990s, our research group set out to develop a measure of the quality of dying and death. We used focus groups; one-on-one interviews with patients, family members, and clinicians; and a literature review to create a 31-item measure that asked participants to rate each item on a scale from 0 to 10, where 0 was a terrible experience and 10 was an almost perfect experience. 6 We chose to conduct these ratings after death to capture the full experience of dying, although this limited us to respondents other than the patient. We then conducted a series of studies that assessed the reliability and validity of this measure across a range of settings, including the community, hospice, hospital, and ICU. 7-11 We created a total score by simply summing the scores on the items that were completed and linearly transforming to a score from 0 to 100. Psychometric analyses of the QODD suggested moderate adherence to the following classic measurement standards: total scores with no fl oor or ceiling effects, an approximately normal distribution and good reliability …
This paper references
SF-36 health survey: Manual and interpretation guide
John E Ware (2003)
10.1056/NEJMoa063446
A communication strategy and brochure for relatives of patients dying in the ICU.
Alexandre Lautrette (2007)
10.7326/0003-4819-139-5_Part_2-200309021-00006
Measuring and Improving the Quality of Dying and Death
Donald L Patrick (2003)
10.1001/archinte.168.9.912
The quality of dying and death.
Sarah Hales (2008)
10.1164/rccm.200802-272OC
Integrating palliative and critical care: evaluation of a quality-improvement intervention.
J. Randall Curtis (2008)
10.1016/s0734-3299(08)70181-3
Quality of Dying and Death in Two Medical ICUs: Perceptions of Family and CliniciansLevy CR, Ely EW, Payne K, et al (Univ of Colorado, Aurora; Vanderbilt Univ, Nashville, Tenn; St Thomas Hosp, Nashville, Tenn; et al) Chest 127:1775–1783, 2005§
Carolyn E. Bekes (2006)
10.1016/j.jpainsymman.2004.01.008
Agreement among family members in their assessment of the Quality of Dying and Death.
Richard A Mularski (2004)
10.1001/jama.1994.03520230049037
The Impact of Serious Illness on Patients' Families
Kenneth E. Covinsky (1994)
10.1016/j.jpainsymman.2009.05.012
The Quality of Dying and Death Questionnaire (QODD): empirical domains and theoretical perspectives.
Lois Downey (2010)
10.1378/chest.128.1.280
Quality of dying in the ICU: ratings by family members.
Richard A Mularski (2005)
J Pain Symptom Manage
(1999)
10.1111/j.1475-6773.2007.00721.x
A systematic review of measures of end-of-life care and its outcomes.
Richard A Mularski (2007)
10.1016/S0885-3924(01)00333-5
Evaluating the quality of dying and death.
Donald L Patrick (2001)
10.1378/chest.12-0569
Perception by family members and ICU staff of the quality of dying and death in the ICU: a prospective multicenter study in The Netherlands.
Rik T. Gerritsen (2013)
10.1016/S0885-3924(98)00131-6
The concept of quality of life of dying persons in the context of health care.
Anita L Stewart (1999)
10.1007/s00134-002-1569-y
Decision-making in the ICU: perspectives of the substitute decision-maker
Daren Keith Heyland (2002)
10.1164/rccm.201006-1004OC
Effect of a quality-improvement intervention on end-of-life care in the intensive care unit: a randomized trial.
J. Randall Curtis (2011)
10.1001/jama.274.20.1591
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.
Alfred F. Connors (1995)
10.1016/S0885-3924(02)00419-0
A measure of the quality of dying and death. Initial validation using after-death interviews with family members.
J. Randall Curtis (2002)
10.1378/chest.09-1291
Predictors of symptoms of posttraumatic stress and depression in family members after patient death in the ICU.
Cynthia J. Gries (2010)
10.1016/s0012-3692(15)37958-7
Quality of dying in the ICU
Richard A Mularski (2005)
10.1177/0269216309351783
Review: The quality of dying and death: a systematic review of measures
Sarah Hales (2010)



This paper is referenced by
10.1093/qjmed/hcv059
Relatives' and staff's experience of patients dying in ICU.
Steven M. Donnelly (2015)
10.1016/j.jcrc.2015.07.006
In response to: Families' experiences of ICU quality of care: Development and validation of a European questionnaire (euroQ2).
Margo van Mol (2015)
10.1016/j.jpainsymman.2017.02.005
Validation of the Spanish Version of the Quality of Dying and Death Questionnaire (QODD-ESP) in a Home-Based Cancer Palliative Care Program and Development of the QODD-ESP-12.
Pedro E Perez-Cruz (2017)
10.12968/ijpn.2015.21.6.306
One size does not fit all for a good death.
Sarah Russell (2015)
10.1017/S1478951514000066
Caring for people dying in acute hospitals: A mixed-methods study to examine relative's perceptions of care.
Katherine Clark (2015)
10.1016/j.jpainsymman.2018.07.004
The Quality of Dying and Death in a Residential Hospice.
Isuri Weerakkody (2018)
The Quality of Dying and Death in Advanced Cancer from the Perspective of Bereaved Caregivers
Sarah Hales (2015)
10.4103/IJPC.IJPC_170_19
Adapting and Using the Quality of Dying and Death Questionnaire
Arunangshu Ghoshal (2020)
10.1007/s00134-017-4898-6
Life after death in the ICU: detecting family-centered outcomes remains difficult
Katherine R. Courtright (2017)
The Quality of Dying and Death of Long-term Care Residents
Samantha Figueiredo Frota Fernandes (2016)
10.4103/IJPC.IJPC_165_18
Effect of Palliative Bronchoscopic Interventions on Symptom Burden in Patients with Central Airway Narrowing: A Retrospective Review
Anuja Pandit (2019)
10.1016/j.jpainsymman.2018.06.003
Inter-Rater Agreement of Intensivists Evaluating the Goal Concordance of Preference-Sensitive ICU Interventions.
Alison E Turnbull (2018)
10.1097/NJH.0000000000000482
Development and Validity of the Nursing Care Scale and Nurse’s Difficulty Scale in Caring for Dying Patients With Cancer and Their Families in General Hospitals in Japan
Yusuke Kanno (2019)
10.1177/0269216315573901
Palliative care in critical illness: Challenges for research and practice
J. Randall Curtis (2015)
10.1016/j.chest.2016.09.003
Comparing Quality of Dying and Death Perceived by Family Members and Nurses for Patients Dying in US and Dutch ICUs
Rik T. Gerritsen (2017)
10.1016/j.jpainsymman.2015.03.020
Validation of the German Version of the Quality of Dying and Death Questionnaire for Informal Caregivers (QODD-D-Ang).
Maria Heckel (2015)
10.1016/j.eururo.2015.06.007
Development of a Standardized Set of Patient-centered Outcomes for Advanced Prostate Cancer: An International Effort for a Unified Approach.
Alicia Katherine Morgans (2015)
10.11124/jbisrir-2012-177
End‐of‐life care in the intensive care unit: a systematic review of qualitative studies investigating the experiences and perceptions of the patient's family.
Alysia Coventry (2012)
10.4226/66/5a9dbc0f33627
An exploration of end-of-life care in the intensive care unit: A systematic review of qualitative studies investigating the experiences and perceptions of the patient's family
Alysia Coventry (2017)
10.1177/0310057X1504300309
Protocolised Approach to End-of-Life Care in the ICU—The ICU PALCare Pilot Project
Arvind Rajamani (2015)
10.1007/s00134-016-4260-4
CAESAR: a new tool to assess relatives’ experience of dying and death in the ICU
Nancy Kentish-Barnes (2016)
10.1177/0269216318819607
Measuring the quality of dying and death in advanced cancer: Item characteristics and factor structure of the Quality of Dying and Death Questionnaire
Kenneth Mah (2019)
10.1080/07481187.2016.1181121
Low quality of dying and death in patients with septic shock as perceived by nurses and resident physicians
Lauren J Van Scoy (2016)
10.1016/j.jagp.2016.01.135
Defining a Good Death (Successful Dying): Literature Review and a Call for Research and Public Dialogue.
Emily A. Meier (2016)
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