Older people’s preferences for prognostic information in a situation of serious illness with less than a year to live

Jorge, Rafaela; Teixeira, Andreia; Calanzani, Natália; Nunes, Rui; Sousa, Liliana

doi:10.1590/1413-812320182411.02022018

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FREE THEMES • Ciênc. saúde coletiva 24 (11) • Nov 2019 • https://doi.org/10.1590/1413-812320182411.02022018 copy

Older people’s preferences for prognostic information in a situation of serious illness with less than a year to live

Authorship SCIMAGO INSTITUTIONS RANKINGS

Abstract

This study aimed to determine the preferences of community-dwelling older people about information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available in a situation of serious illness with less than a year to live; and to identify factors associated with a preference for information disclosure regarding poor prognosis. The Brazilian version of the Preferences and Priorities for End of Life Care (PRISMA) questionnaire was administered face-to-face to 400 older people, living in the city of Belo Horizonte, Minas Gerais, Brazil. The main results indicated that 74.0% preferred to be informed that they had limited time left, 89.3% wished to be informed about symptoms and problems, and 96.3% about available care options. The factors associated with preferences for information about poor prognosis were: gender (women: OR = 0.446, 95% CI: 0.269-0.738) and choosing the least preferred place to die (home of a relative or friend: OR = 2.423, 95% CI: 1.130-5.198. These results show that most older people want to be informed in an advanced illness situation with less than a year to live. Health care professionals need to be prepared to anticipate news about poor prognosis and the disease.

Key words
Aged; Palliative care; Information; Prognosis; Brazil

Variables	n	%
Age bands (years)
60-69	217	54.3
70-79	121	30.3
≥80	62	15.5
Gender
Female	241	60.3
Male	159	39.7
Education
No formal schooling	30	7.5
Up to 4 years	149	37.3
Up to 8 years	54	13.5
Up to 11 years	122	30.5
Higher education	45	11.3
Marital Status
Single	61	15.3
Married or with a partner	167	41.8
Separated or Divorced	50	12.5
Widowed	122	30.5
Religion
Roman Catholic	267	66.8
Protestantism/Evangelical	63	15.8
Spiritism/Afro-Brazilian	37	9.3
Other	11	2.8
No religion	22	5.5
Ethnicity
White	114	28.5
Black	63	15.8
Brown and other (1: Asian Brazilian; 1: Indigenous)	223	55.8
Activities in the last seven days
In education (not paid for by employer) even if on vacation	26	6.5
Unemployed	41	10.3
Permanently sick or disabled	5	1.3
In paid work	136	34.0
Retired	323	80.8
Pensioner	102	25.5
Doing housework, looking after children or others	34	8.5
Other	38	9.5
Financial hardship
Very difficult on present income	24	6.0
Difficult on present income	55	13.8
Coping on present income	207	51.7
Living comfortably on present income	114	28.5
Living with: adults
None (myself)	76	19.0
One adult	153	38.3
Two adults	98	24.5
Three adults	39	9.8
Four or more	34	8.5
Living with:children
None	351	87.8
One child	34	8.5
Two or more	15	3.8
Health
Fair	76	19.0
Good	214	53.5
Very good	110	27.5
Preferred place of death
Own home/home of relative or friend*	209	52.2
Palliative care unit	71	17.8
Hospital - but not palliative care unit	86	21.5
Nursing home or residential home	34	8.5
Least preferred place of death
Own home	60	15.0
Home of a relative or friend	88	22.0
Palliative care unit	8	2.0
Hospital - but not palliative care unit	85	21.3
Nursing home or residential home	159	39.8
Experience of illness, death and dying
Close relative/friend seriously ill in last 5 years	299	74.8
Death of close relative/friend in last 5 years	270	67.5
Diagnosed with serious illness in last 5 years	76	19.0
Cared for close relative/friend in last months of life	264	66.0

Would want to know about	Age bands, Male			Age bands, Female			Total
Would want to know about	60-69	70-79	≥ 80	60-69	70-79	≥ 80	Total
Time left
Yes, always	79 (84.9%)	38 (80.9%)	15 (78.9%)	84 (67.7%)	55 (74.3%)	25 (58.1%)	296 (74.0%)
Yes, but only if you ask about it	2 (2.2%)	0 (-)	1 (5.3%)	10 (8.1%)	2 (2.7%)	3 (7%)	18 (4.5%)
No	12 (12.9%)	8 (17.0%)	3 (15.8%)	27 (21.8%)	17 (23.0%)	15 (34.9%)	82 (20.5%)
Don't know	0 (-)	1 (2.1%)	0(-)	3 (2.4%)	0(-)	0(-)	4 (1.0%)
Symptoms and problems
Yes, always	86 (92.5%)	46 (97.9%)	16 (84.2%)	107 (86.3%)	70 (94.6%)	32 (74.4%)	357 (89.3%)
Yes, but only if you ask about it	1 (1.1%)	1 (2.1%)	0 (-)	7 (5.6%)	2 (2.7%)	2 (4.7%)	13 (3.3%)
No	5 (5.4%)	0(-)	3 (15.8%)	10 (8.1%)	2 (2.7%)	9 (20.9%)	29 (7.3%)
Don't know	1 (1.1%)	0(-)	0 (-)	0 (-)	0 (-)	0 (-)	1 (0.3%)
Care options
Yes, always	90 (96.8%)	47 (100%)	17 (89.5%)	117 (94.4%)	73 (98.6%)	41 (95.3%)	385 (96.3%)
Yes, but only if you ask about it	0 (-)	0 (-)	1 (5.3%)	3 (2.4%)	1 (1.4%)	2 (4.7%)	7 (1.8%)
No	3 (3.2%)	0 (-)	1 (5.3%)	4 (3.2%)	0 (-)	0 (-)	8 (2.0%)
Don't know	0 (-)	0 (-)	0 (-)	0 (-)	0 (-)	0 (-)	0(-)

Factors	OR [95% CI]	p-value
Age bands (ref: 60-69 years)
70-79	1.100 [0.652 - 1.856]	0.720
≥80	0.602 [0.329 - 1.102]	0.100
Gender (ref: male)
Female	0.436 [0.266 - 0.714]	*0.001^ * Significant results are presented at significance level of 5%.**
Marital Status: (ref: single)
Married or with a partner	1.357 [0.696 - 2.648]	0.370
Divorced or separated	0.902 [0.395 - 2.055]	0.805
Widowed	0.960 [0.485 - 1.902]	0.908
Education (ref: no formal schooling)
Up to 4 years	0.584 [0.209 - 1.634]	0.306
Up to 8 years	0.475 [0.154 - 1.461]	0.194
Up to 11 years	0.518 [0.183 - 1.462]	0.214
Higher education	0.618 [0.191 - 2.005]	0.423
Religion (ref: Roman Catholic)
Protestantism/Evangelical	1.393 [0.727 - 2.670]	0.318
Spiritism/Afro-Brazilian	1.194 [0.514 - 2.774]	0.681
Other	5.969 [0.775 - 45.976]	0.086
No religion	1.353 [0.482 - 3.797]	0.566
Ethnicity (ref: white)
Black	0.790 [0.399 - 1.565]	0.499
Brown	1.030 [0.612 - 1.732]	0.912
Other	0.341 [0.021 - 5.631]	0.452
Financial hardship (ref: Very difficult on present income)
Difficult on present income	0.976 [0.323 - 2.948]	0.966
Coping on present income	0.836 [0.316 - 2.210]	0.718
Living comfortably on present income	1.187 [0.426 - 3.307]	0.743
Health (ref: very bad)
Fair	0.976 [0.323 - 2.948]	0.966
Good	0.836 [0.316 - 2.210]	0.718
Very good	1.187 [0.426 - 3.307]	0.743
Close relative/friend seriously ill in last 5 years (ref: yes)
No	0.778 [0.472 - 1.285]	0.327
Death of close relative/friend in last 5 years (ref: yes)
No	0.988 [0.614 - 1.592]	0.961
Diagnosed with serious illness in last 5 years (ref: yes)
No	0.859 [0.479 - 1.539]	0.609
Cared for close relative/friend in last months of life (ref: yes)
No	1.376 [0.846 - 2.238]	0.198
Preferred place of death (ref: own home/home of relative or friend)
Palliative care unit	0.883 [0.479 - 1.631]	0.692
Hospital - but not a palliative care unit	0.745 [0.426 - 1.302]	0.745
Nursing home or residential home	1.049 [0.447 - 2.462]	0.912
Least preferred place of death (ref: own home)
Home of a relative or friend	2.605 [1.225 - 5.540]	*0.013^ * Significant results are presented at significance level of 5%.**
Palliative care unit	0.965 [0.210 - 4.432]	0.963
Hospital - but not a palliative care unit	1.658 [0.811 - 3.389]	0.166
Nursing home or residential home	1.666 [0.884 - 3.141]	0.114

Variables	OR [95% CI]	p-value
Gender (ref: male)
Female	0.446 [0.269 - 0.738]	*0.002^ * Significant results are presented at significance level of 5%.**
Least preferred place of death (ref: own home)
Home of a relative or friend	2.423 [1.130 - 5.198]	*0.023^ * Significant results are presented at significance level of 5%.**
Palliative care unit	1.059 [0.228 - 4.925]	0.942
Hospital - but not a palliative care unit	1.497 [0.724 - 3.095]	0.276
Nursing home or residential home	1.415 [0.739 - 2.706]	0.295

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[1] Collaborations

R Jorge participated in study conception and design, data collection, analysis, and interpretation, and in drafting this article. A Teixeira participated in data analysis and interpretation and the revision of this article. N Calanzani participated in data analysis and interpretation and the revision of this article. R Nunes participated in study conception and design and the critical revision of the version to be published. L Sousa participated in study conception and design, data analysis and interpretation, and in the critical revision of the version to be published.