End-of-life care and preferences

End-of-life care and preferences

LASA filenames:
LASAD093
LASA*094
LASA*108
LASA*122
LASA*127
LASAF146
LASAG148
LASA*195
LASAD709

Contact: Roeline Pasman

Background
In the Netherlands, about 150.000 people die each year. About one quarter of these people die unexpectedly, for instance due to an accident or heart attack. For the other people death is more or less foreseen. More than 80% of deceased people whose death is foreseen, are aged over 65, and half are aged over 80. (Onwuteaka-Philipsen et al, 2017). End-of-life attitudes and preferences as well as end-of-life care are therefore relevant for older people.
In order to better understand older people’s end-of-life attitudes and preferences, LASA includes measures of: advance directive possession; end-of-life attitudes and preferences; and end-of-life care. In 2000, 2010 and 2020 ancillary studies were done among proxies of deceased LASA participants  about the last phase of life of deceased LASA participants (see ancillary studies).

Measurement instruments in LASA
As from the third cycle (D), questions about advance directives were included (LASAD093 / LASAD709, LASAF195 / LASAG195 / LASAH195 / LASAI195 / LASAJ195/LASAK195). People were asked if they had completed Advance Directives (AD), and if yes, which type(s) of AD. Also was asked if they had talked about the AD and their preferences for end-of-life care with family or physician. (Rurup et al 2006; Bolt et al 2016).

As from cycle B,  respondents were asked their opinion about requesting a doctor to end one’s life (euthanasia: variable VALU03 in LASA*122) (variable VALU17 in LASA*122, EOL12 in LASAF195).

As from cycle D, respondents were also asked whether they could imagine requesting their physician to end their life (euthanasia: variable VALU16 in LASA*122 , variable EOL05 in LASAD093 and LASAD709), or imagine asking for a pill to end their life if they became tired of living in the absence of a severe disease (end-of-life pill: variables VALU18 in LASA*122, variable EOL13 in LASAF195). Moreover, in cycle J and K a new, a more general question was asked under what circumstances they would consider to use a pill to end their life. See Buiting (2012) reporting about cycles E, F, G.

In cycle F, questions derived from the Paykel scale (1974) about death wishes were asked (LASAF195). (Rurup et al 2011). In cycle I and J, and K the questions derived from the Paykel scale (see LASAF195) about feelings and wishes about life and death were asked again (eol07-11 in LASAI127 and LASAJ127). (See Kox et al 2021 about cycle I and J)

Moreover, end-of-life wishes about degree of control, help, treatment and place/moment of dying were asked (LASAF146).

In cycles F, G, H, I, J and K questions about trust in doctors that they will respect their end-of-life wishes and trust in doctors that they will provide good end-of-life care were asked (LASA*195).

In cycle G, people were presented scenario’s (suffering from cancer or suffering from dementia) and were asked whether they would want certain life prolonging treatments in these scenario’s (LASAG148).

In cycles G, H, I , J and K a more general question was asked:
“When you think about the future, which do you prefer:
1. To live as old as possible, irrespective of health problems, or
2. To have a shorter life, if without major health problems”
(Evans et al 2014) (question PFLT in LASA*094).

In cycle G, questions about preferences for involvement in medical decision-making were asked using the Control Preference Scale (CPS) (Degner et al, 1997) (LASAG148).

In cycles I, J and K, the questions derived from the Paykel scale (see LASAF195) about feelings and wishes about life and death were asked again (eol07-11 in LASAI127, LASAJ127 and LASAK127). Furthermore, in LASAI108 questions about Advance Care Planning (ACP) were asked (for the English translation see: LASA Engagement in ACP questionnaire). In LASAK108 a new ACP questionnaire was developed, see under Questionnaires below.

Questionnaires
LASAD093
(main interview, in Dutch);
Variable PFLT in LASAG094 / LASAH094 / LASAI094 / LASAJ094 / LASAK094
(main interview, in Dutch);
LASAI108 / LASAK108
(self-administered questionnaire, in English, in Dutch);
Variable VALU03 in LASAB122 / LASAC122 / LASAD122 / LASAE122 / LAS2B122 / LASAF122 / LASAG122 / LASAH122 / LAS3B122 / LASAI122;
Variables VALU16, VALU17 and VALU18 in LASAE122 / LASAF122 / LASAG122 / LASAH122 / LAS3B122 / LASAI122 / LASAJ122 / LASAK122
(self-administered questionnaire, in Dutch);
LASAI127 / LASAJ127 / LASAK127
(self-administered questionnaire, in Dutch);
LASAF146
(self-administered questionnaire, in Dutch);
LASAG148
(self-administered questionnaire, in Dutch);
LASAF195 / LASAG195 / LASAH195 / LASAI195 / LASAJ195 / LASAK195
(medical interview, in Dutch);
LASAD709
(telephone interview with RESP, in Dutch)

Variable information
LASAD093
(pdf);
Variable PFLT in LASAG094 / LASAH094 / LASAI094 / LASAJ094 / LASAK094
(pdf);
LASAI108 / LASAK108
(pdf);
Variable VALU03 in LASAB122 / LASAC122 / LASAD122 / LASAE122 / LAS2B122 / LASAF122 / LASAG122 / LASAH122 / LAS3B122 / LASAI122;
Variables VALU16, VALU17 and VALU18 in LASAE122 / LASAF122 / LASAG122 / LASAH122 / LAS3B122 / LASAI122 / LASAJ122 / LASAK122 (K not available yet)
(pdf);
LASAI127 / LASAJ127 / LASAK127
(pdf);
LASAF146
(pdf);
LASAG148
(pdf);
LASAF195 / LASAG195 / LASAH195 / LASAI195 / LASAJ195 / LASAK195
(pdf);
LASAD709
(pdf)

Availability of information per wave ¹

¹ More information about the LASA data collection waves is available here

* 2B=baseline second cohort;
3B=baseline third cohort;
MB=migrants: baseline first cohort;
K=not available yet (Sa122)

Ma=data collected in main interview;
Me=data collected in medical interview;
Sa=data collected in self-administered questionnaire;
Tr=data collected in telephone interview with respondent

Ancillary studies in LASA
In three ancillary studies in 2000, 2010 and 2020, after-death interviews/questionnaires with proxies were used. For more information, go to eol ancillary study.

Publications with LASA-data

1. Buiting HM, Deeg DJ, Knol DL, Ziegelmann JP, Pasman HR, Widdershoven GA, Onwuteaka-Philipsen BD. Older peoples’ attitudes towards euthanasia and an end-of-life pill in The Netherlands: 2001-2009. J Med Ethics. 2012 May;38(5):267-73. doi: 10.1136/medethics-2011-100066. Epub 2012 Jan 12.
2. Evans N, Pasman HR, Deeg D, Onwuteaka-Philipsen B; on behalf of EURO IMPACT. How do general end-of-life treatment goals and values relate to specific treatment preferences? A population-based study. Palliat Med. 2014 Jun 18. pii: 0269216314540017. Palliat Med. 2014 Jun 18. pii: 0269216314540017.
3. Rurup ML, Onwuteaka-Philipsen BD, van der Heide A, van der Wal G, Deeg DJ. Frequency and determinants of advance directives concerning end-of-life care in The Netherlands. Soc Sci Med. 2006 Mar;62(6):1552-63. Epub 2005 Sep 12.
4. Rurup ML, Deeg DJH, Poppelaars JL, Kerkhof AJFM, Onwuteaka-Philipsen BD. Wishes to die in older people. A quantitative study of prevalence and associated factors. Crisis 2011;32(4):194-203.
5. Bolt EE, Pasman HR, Deeg DJ, Onwuteaka-Philipsen BD. From Advance Euthanasia Directive to Euthanasia: Stable Preference in Older People? J Am Geriatr Soc. 2016 Aug;64(8):1628-33. doi: 10.1111/jgs.14208. Epub 2016 Jun 15. PMID: 27304422.
6. Kox RMK, Pasman HRW, Huisman M, Benneker W, Onwuteaka-Philipsen BD. Current wishes to die; characteristics of middle-aged and older Dutch adults who are ready to give up on life: a cross-sectional study. BMC Med Ethics. 2021 May 21;22(1):64. doi: 10.1186/s12910-021-00632-4. PMID: 34020628; PMCID: PMC8140496

References

• Degner LF, Sloan JA, Venkatesh P: The control preferences scale. Can J Nurs Res 1997, 29(3):21–43
• European Commission (2011). Demography Report 2010: Older, More Numerous and Diverse Europeans. Luxembourg, Publications Office of the European Union.
• Paykel ES, Meyers JK, Lindenthal JJ, Tanner J. Suicidal feelings in the general population: A prevalence study. British journal of Psychiatry 1971;124:460-469.
• Onwuteaka-Philipsen, B.; Legemaate, J.; van der Heide, A.; van Delden, H.; Evenblij, K.; El Hammoud, I.; Pasman, R.; Ploem, C.; Pronk, R.; van de Vathorst, S.; Willems, D. (2017). Derde evaluatie Wet toetsing levensbeëindiging op verzoek en hulp bij zelfdoding. Den Haag: ZonMw, mei 2017. Reeks evaluatie regelgeving: deel 40.

Date of last update: February, 2022