Background
Methods
Sample selection
Statistical analysis
Qualitative analysis
Data collection
Data analysis
Terminology
Ethics
Results
Demographic data
Total sample | Health care proxy | Advance directives | ||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Yes | No | N/A | Yes | No | N/A | |||||||||
n. | % | n. | % | n. | % | n. | % | n. | % | n. | % | n. | % | |
Year medical records were studied
| ||||||||||||||
2008-2009 | 60 | 30.5 | 35 | 58.3 | 14 | 23.3 | 11 | 18.3 | 3 | 5.0 | 34 | 56.7 | 23 | 38.3 |
2010 | 54 | 27.4 | 38 | 70.4 | 10 | 18.5 | 6 | 11.1 | 4 | 7.4 | 34 | 63.0 | 16 | 29.6 |
2011-2012 | 83 | 42.1 | 54 | 65.1 | 14 | 16.9 | 15 | 18.1 | 5 | 6.0 | 52 | 62.7 | 26 | 31.3 |
Population
| 197 | 100.0 | 127 | 64.5 | 38 | 19.3 | 32 | 16.2 | 12 | 6.1 | 120 | 60.9 | 65 | 33.0 |
Gender
| ||||||||||||||
Male | 110 | 55.8 | 71 | 64.5 | 21 | 19.1 | 18 | 16.4 | 6 | 5.5 | 72 | 65.5 | 32 | 29.1 |
Female | 87 | 44.2 | 56 | 64.4 | 17 | 19.5 | 14 | 16.1 | 6 | 6.9 | 48 | 55.2 | 33 | 37.9 |
Sex ratio | 1.26 | 1.27 | 1 | |||||||||||
Age groups on diagnosis
| ||||||||||||||
<70 | 124 | 63.0 | 79 | 63.7 | 27 | 21.8 | 18 | 14.5 | 5 | 4.0 | 83 | 66.9 | 36 | 29.0 |
≥70 | 73 | 37.0 | 48 | 65.8 | 11 | 15.1 | 14 | 19.2 | 7 | 9.6 | 37 | 50.7 | 29 | 39.7 |
Median age (years) | 66 | 67 | 73 | |||||||||||
Average age (years) SD (min-max) | 64.4 ± 15.8 [18;91] | 64.8 ± 14.2 [23;91] | 72.5 ± 5.6 [62;83] | |||||||||||
Marital status
| ||||||||||||||
Married or with a partner | 138 | 70.1 | 98 | 71.0 | 24 | 17.4 | 16 | 11.6 | 9 | 6.5 | 87 | 63.0 | 42 | 30.4 |
Single/Widowed | 44 | 22.3 | 19 | 43.2 | 11 | 25.0 | 14 | 31.8 | 3 | 6.8 | 22 | 50.0 | 19 | 43.2 |
Not filled in | 15 | 7.6 | 10 | 66.7 | 3 | 20.0 | 2 | 13.3 | - | - | 11 | 73.3 | 4 | 26.7 |
Pathologies
| ||||||||||||||
Lymphoid pathologies1
| 136 | 69.0 | 91 | 66.9 | 26 | 19.1 | 19 | 14.0 | 4 | 2.9 | 81 | 59.6 | 51 | 37.5 |
Myeloid pathologies and others2
| 61 | 31.0 | 36 | 59.0 | 12 | 19.7 | 13 | 21.3 | 8 | 13.1 | 39 | 63.9 | 14 | 23.0 |
Wish to meet a religious representative
| ||||||||||||||
16 | 8.1 | 12 | 75.0 | 1 | 6.3 | 3 | 18.8 | 6 | 37.5 | 9 | 56.3 | 1 | 6.3 | |
Wish to meet a volunteer
| ||||||||||||||
9 | 4.6 | 6 | 66.7 | 1 | 11.1 | 2 | 22.2 | 3 | 33.3 | 5 | 55.6 | 1 | 11.1 |
Description of the sample of patients who designated a health care proxy
Quantitative content analysis
Designation of a health care proxy | n. | % |
---|---|---|
Yes | 127 |
64.5
|
No | 38 |
19.3
|
Not filled in | 32 |
16.2
|
Total
|
n = 197
|
100%
|
Identity of the chosen person
| ||
Spouse/Partner | 76 |
60
|
Child | 30 |
24
|
Close relative (cousin, nephew, in-law) | 5 |
4
|
Other (doctor, ex-partner) | 5 |
4
|
Sibling | 4 |
3
|
Parent/Grandparent | 3 |
2
|
Unspecified | 4 |
3
|
Total
|
n = 127
|
100%
|
Variables | Odds Ratio | 95% CI |
p-value
| |
---|---|---|---|---|
Gender
| ||||
Male | 1.0 | |||
Female | 0.9 | [0.4-2.0] |
0.944
| |
Age
| ||||
<70 years | 1.0 | |||
≥70 years | 1.4 | [0.6-3.3] |
0.320
| |
Marital status
| ||||
Single | 1.0 | |||
Married or with a partner | 2.4 | [1.0-5.9] |
0.040
| |
Pathology
| ||||
Myeloid and others | 1.0 | |||
Lymphoid | 0.8 | [0.3-1.9] |
0.701
| |
Time period
| ||||
2008-2009 | 1.0 |
0.333
| ||
2010 | 1.5 | [0.6-3.9] | ||
2011-2012 | 1.5 | [0.6-3.6] | ||
Wish to meet a religious representative
| ||||
No | 1.0 | |||
Yes | 4.0 | [0.7-76.1] |
0.185
| |
Wish to meet a volunteer
| ||||
No | 1.0 | |||
Yes | 2.0 | [0.3-39.0] |
0.522
|
Result of analysis by multivariate binomial logistic regression using a step-down method of factors associated with the designation of a health care proxy
| |||
---|---|---|---|
Variables | Odds Ratio | 95% CI |
p-value
|
Marital status
| |||
Single | 1.0 | ||
Married or with a partner | 2.4 | [1.0-5.9] |
0.040
|
Result of analysis by multivariate binomial logistic regression using a step-down method of factors associated with the writing of advance directives
| |||
Variables | Odds Ratio | 95% CI |
p-value
|
Wish to meet a volunteer
| |||
No | 1.0 | ||
Yes | 13.0 | [2.2-72.1] |
0.003
|
Description of the sample of patients who wrote advance directives
Quantitative content analysis
Variables | Odds ratio | 95%CI |
p-value
| |
---|---|---|---|---|
Gender
| ||||
Male | 1.0 | |||
Female | 1.5 | [0.4-5.0] |
0.504
| |
Age
| ||||
<70 | 1.0 | |||
≥70 | 3.1 | [0.9-11.2] |
0.064
| |
Marital status
| ||||
Single | 1.0 | |||
Married or with a partner | 1.1 | [0.2-7.8] |
0.874
| |
Pathology
| ||||
Myeloid and others | 1.0 | |||
Lymphoid | 4.1 | [1.2-16.3] |
0.027
| |
Time period
| ||||
2008 -2009 | 1.0 |
0.947
| ||
2010 | 1.3 | [0.2-7.2] | ||
2011-2012 | 1.0 | [0.2-5.5] | ||
Wish to meet a religious representative
| ||||
No | 1.0 | |||
Yes | 14.2 | [3.6-59.2] |
<0.001
| |
Wish to meet a volunteer
| ||||
No | 1.0 | |||
Yes | 13.0 | [2.2-72.1] |
0.003
|
Qualitative findings
Them 1: patients’ wishes about medical care decisions
In full possession of my mental and physical faculties, such are my directives… I intend to be as conscious as possible at the time of my death… (Participant 2)
A worsening of my state of health… (Participant 1)A deterioration of my faculties… (Participant 2)If the progression of my state suddenly reduces my free will, whatever the cause, I request… (Participant 5)
I wish to be spared from all aggressive therapy, as well as all artificial means of survival that would leave me deprived of my mental faculties or suffering from intolerable pain. (Participant 3)I do not want any life-sustaining care… (Participant 1)I refuse all life-sustaining care… (Participant 4)No life-sustaining care, I do not want to be a guinea pig… (Participant 6)
I request that my life is not prolonged… I have survived thanks to transfusions for four years… Let the medical profession sort this out themselves. I hereby free them of all civil and penal responsibility… (Participant 5)
Yes for administration of painkillers, so that the pain will not prevent me from serenely expressing myself… (Participant 2)I wish to be spared from intolerable suffering… (Participant 3)I fear all pain… (Participant 5)
Yes to palliative care. No to all aggressive care. No to any surgery that would leave the final prognosis unchanged… (Participant 2)Should the possibility arise, I absolutely refuse all resuscitation (Participant 4)
No to all drugs likely to induce the loss of my remaining faculties (sight, mobility, bodily functions)… (Participant 2)
My main anxiety is choking and suffocation. My own father died in my home by suffocation… unable to express himself… unconscious… The experience I had that day was too acute for time to erase… (Participant 5)The serious structural weakness, which is worsening as my disease progresses, is taking me from my armchair to my bed to drowse or to sleep… (Participant 5)
Following the patient information form I just completed, I inform you that in case of hospitalization and worsening of my state, I do not wish to die in L…I express a very doubtful opinion regarding the information my daughter will be supplied with… (Participant 1)
Theme 2: personal messages to relatives or a personal philosophy about end of life
I have had my time… Life is a marvel but one must know how to end even the best of things. I will have lived enough… (Participant 5)My sincere desire is to end the path of my life with the best support, so that it will reach its conclusion in all serenity… (Participant 4)In case of deterioration of my faculties, I trust my wife and any of my six children to make a decision according to the spirit of the present document… (Participant 2)
I thank you in advance for the attention you will give to me… (Participant 4)I thank you for agreeing to take these guidelines into consideration… (Participant 1)