Transcript
Using death certificate data for an international study on the place of death Joachim Cohen
Tuesday, July 02, 2013
Index
1. Why the place of death? 2. Opportunities of death certificate data to study place of death 3. Methodological details of the death certificate data in IPoD 4. Some results from the IPoD study 5. Conclusions and discussion points
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1.Why the place of death?
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Why does place of death matter?
• Aim palliative care
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Why does place of death matter?
• Aim palliative care • Preferences • Indicator for cross-national comparisons • Quality of end of life • Health care costs
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Where do people want to die? 0
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Preferences
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GENERAL PUBLIC Gallup 1997 Foreman et al. 2006 Toscani 1991 Ashby 1993 Charlton 1991
CANCER PATIENTS Beccaro et al 2006 Gilbar 1996 Tang & McCorkle 2003 Tang 2003 Koffman & Higginson 2004 Gyllenhammar et al. 2003 Hsieh et al. 2007 Wood et al. 2007 Sanjo et al. 2007 Choi et al. 2010 Brazil et al.1 2005 Tang 2005 Tang et al. 2005 Foreman et al. 2006 Townsend 1990 Stajduhar et al. 2008 Choi 2005 Fried et al. 1999 Agar et al. 2008 TERMINAL PATIENTS Hinton 1994 Pritchard 1998 Tiernan 2002 Brettle 1995
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But is it really that important to people?
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Factors considered important for quality of dying 0
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have someone who will listen maintain dignity trust physician free of pain maintain sense of humor say goodbye free of anxiety have physician who knows one as a whole person share time with friends presence of family not die alone
die at home
From: Steinhauser et al (2000) Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers JAMA. 2000;284(19):2476-2482. doi:10.1001/jama.284.19.2476
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Does dying in hospital then not guarantee a better care?
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Quality of death by place of death 2.4
2.5
2.6
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Awareness
Acceptance
* Hospital-Dea Home-Death
Propriety
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Timeliness
Comfort
Overall score: home 14,18 ; Hospital 13,48 Yao et al. J Pain Symptom Manage. 2007 Nov;34(5):497-504 Tuesday, July 02, 2013
Quality of end-of-life care by place of death 4.1
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Physical care 1. Symptom control 2. Satisfaction of patients and families 3. Bereavement support
Autonomy 1. Respect for dignity 2. Decision-making participation
Hospital-Death Home-Death
support 1. Alleviation of anxiety 2. Resolution of depression 3. Verbal support 4. Nonverbal support
continuity of care 1. Continuity of social support 2. Affirmation of one's past life 3. Fulfillment of last wish
Overall score: home 56,69 ; Hospital 53,97 Yao et al. J Pain Symptom Manage. 2007 Nov;34(5):497-504
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2. Opportunities of death certificate data
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Research needs Existing research: limitations sample, population, setting, comparison population level information? end-of-life care policy
End-of-Life Care Research Group
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Opportunities of dc data Strengths long tradition as health indicator large numbers (statistical power) study many associated factors, subpopulations,... data across patient populations and across settings comparability easy to obtain (?) place of death information (?) End-of-Life Care Research Group
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3. Methodological details of IPoD
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IPoD study Open call for participants Requirements: Database Place of death variable Clinical, sociodemographic, residential, health care system variables (cfr. Literature)
Integration in common database Using: Death certificate data 2008 Linkage with other databases (?)
• Eg population databases • Information about residence of deceased (e.g. health care system variables, contexual SES)
End-of-Life Care Research Group
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International Place of Death (IPoD study)
Linked death certificate data 2008
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IPoD-study Included countries 1 Belgium 2 England 3 Wales 4 France 5 Italy 6 Mexico 7 Netherlands 8 New Zealand 9 Spain (Andalusia) 10 Canada 11 Czech Republic 12 Hungary 13 Korea Total End-of-Life Care Research Group
year=2008 101.685 475.763 32.066 541.135 578.192 528.093 135.136 29.312 57.380 182.134 101.804 130.027 247.757 3.140.484 Tuesday, July 02, 2013
IPoD-study Place of death variable Hospital Home 1 Belgium 2 England 3 Wales 4 France 5 Italy 6 Mexico 7 Netherlands 8 New Zealand 9 Spain (Andalusia) 10 Canada 11 Czech Republic 12 Hungary 13 Korea End-of-Life Care Research Group
Nursing Palliative care home/care home institution
Other institution
Other x x x x x x x
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IPoD-study Cause of death and core sociodemographic variables Underlying cause of death
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Belgium England Wales France Italy Mexico Netherlands New Zealand
9 Spain (Andalusia) 10 Canada 11 Czech Republic 12 Hungary End-of-Life Research 13Care Korea Group
precoded ICD-10 codes categories x x x x x x x x x x x x x
age
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15 categories x x x x x x x x
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SWOT-analysis
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Other sociodemographic variables on death certificates (X) or via linkage (L)
1 Belgium 2 England 3 Wales 4 France 5 Italy 6 Mexico 7 Netherlands 8 New Zealand 9 Spain (Andalusia) 10 Canada 11 Czech Republic 12Care Hungary End-of-Life Research Group 13 Korea
living situation (alone, educational marital with attainment status others) x x x x x x x x L x x L L
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region urbaniza hospital code tion beds x L L x L L x L L x L L x L L x L L x L L x L L x x
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care home beds L L L L L
GPs L L L L L
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L L L LTuesday, July L 02, 2013 L L L L
Approvals and permissions! 2003 study: data agency Italya Belgiuma Netherlands Sweden Denmark Scotland (UK) England/Wales (UK) Norway
data protections restrictions in use additional agency approval/license
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2008 study: no approvals for: -Portugal -Sweden -Australia -Japan End-of-Life Care Research Group
- Taiwan/China - Denmark
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4. Some results of IPoD
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5. Conclusions / discussion
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Conclusions DC data provide good opportunities to study place of death: Place of death on death certificate Most variables available appropriate statistical models Linkage with other databases Integrated cross-national database
End-of-Life Care Research Group
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Discussion But Variation between countries in: Place of death on death certificate Information on the death certificate Recording/coding of variables Rules and procedures to get the data waiting periods Limited use of data Quality assurance of certification
Limitations inherent to dc data End-of-Life Care Research Group
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Discussion Possible recommendations? Modifications in: death certificates ? (Coding ?) rules and procedures to use data
End-of-Life Care Research Group
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Using death certificate data for an international study on the place of death
[email protected] www.endoflifecare.be
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