End-of-life care and preferences

End-of-life care and preferences

LASA filenames:
LASAD093
LASA*094
LASAI108
LASA*122
LASAI127
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 and 2010 close relatives of deceased LASA participants were interviewed about the last phase of life of their relative (see side studies).

Measurement instruments in LASA

As from the third cycle (D), questions about advance directives were included (LASAD093 / LASAD709, LASAF195 / LASAG195 / LASAH195 / LASAI195 / LASAJ195). 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).

In cycles B, C, D, E, 2B, F, G, H, 3B and I , respondents were asked their opinion about requesting a docter to end one’s life (euthanasia: variable VALU03 in LASA*122). In the same cycles and in cyle J, respondents were asked their opinion about the availability of an end-of-life pill (variable VALU17 in LASA*122, EOL12 in LASAF195).

In cycles E, F, G, H, 3B, I and J, respondents were 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 a new, 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). 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 and J, 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 and J,  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 cycle I and J, 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). Furthermore, in LASAI108 new questions about Advance Care Planning (ACP) were asked (for the English translation see: LASA Engagement in ACP questionnaire).

Questionnaires

LASAD093
(main interview, in Dutch);
Variable PFLT in LASAG094 / LASAH094 / LASAI094 / LASAJ094
(main interview, in Dutch);
LASAI108
(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
(self-administered questionnaire, in Dutch);
LASAI127 / LASAJ127
(self-administered questionnaire, in Dutch);
LASAF146
(self-administered questionnaire, in Dutch);
LASAG148
(self-administered questionnaire, in Dutch);
LASAF195 / LASAG195 / LASAH195 / LASAI195 / LASAJ195
(medical interview, in Dutch);
LASAD709
(telephone interview with RESP, in Dutch)

Variable information

LASAD093
(pdf);
Variable PFLT in LASAG094 / LASAH094 / LASAI094 / LASAJ094 (J not available yet)
(pdf);
LASAI108
(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 (J not available yet)
(pdf);
LASAI127 / LASAJ127 (J not available yet)
(pdf);
LASAF146
(pdf);
LASAG148
(pdf);
LASAF195 / LASAG195 / LASAH195 / LASAI195 / LASAJ195 (I and J not available yet)
(pdf);
LASAD709
(pdf)

Availability of information per wave
¹

 BCDE
2B*
FGH

3B*
MB*
I*J*K*
Advance directives
(AD): possession
Ma093
Tr709
Me195Me195Me195Me195Me195
Family physician
informed about AD
Ma093
Tr709
Other persons
informed about AD
Ma093
Tr709
Appointed proxy
in case of
incompetence
(about AD)
Ma093
Tr709
Me195Me195Me195Me195Me195
Discussed
EOL-choices
with family
physician
Ma093
Tr709
Me195Me195Me195Me195Me195
Discussed
EOL-choices with
other persons
Me195Me195Me195Me195Me195
Could imagine
requesting
euthanasia
(to doctor
(LASA093,
LASA709: EOL05;
LASA122: VALU16)
Ma093
Tr709
Sa122Sa122Sa122Sa122Sa122Sa122Sa122
Reasons participant
would request
euthanasia
Ma093
Tr709
Trust in doctors
to respect
end-of-life wishes
Me195Me195Me195Me195Me195
Trust in doctors
to provide good
end-of-life care
Me195Me195Me195Me195Me195
Trust
doctors/nurses
towards eol-wishes
Ma093
Tr709
Feelings and
wishes about life
and death (Paykel)
Me195Sa127Sa127
Believes suicide
medication
must be available
(LASA*122:VALU17;
LASAF195: EOL12)

Sa122
Me195
Sa122

Sa122

Sa122

Sa122

Sa122

Sa122
Imagine suicide
medication in
possession
(VALU18)

Sa122
Me195
Sa122

Sa122

Sa122

Sa122

Sa122

Sa122
Circumstances for
taking
suicide medication
Me195
Usage suicide
medication
within few months
Me195
Opinion about
request
to doctor to end
someone’s life
(VALU03)
Sa122Sa122Sa122Sa122Sa122Sa122Sa122Sa122Sa122Sa122
Medical end-of-life
treatment
preferences in case
of cancer
and dementia
Sa148
General end of life
goals (Evans)
Ma094Ma094Ma094Ma094
Preferred
involvement in
decision making in
eol-situations (CPS)
Sa148
If I die, I hope…Sa146
(Intentions to)
Advance Care
Planning (ACP)
(10 items)
Sa108
BCDE
2B*
FGH

3B*
MB*
IJK*

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;
I=LASAI195 not available yet;
J=LASAJ094, LASAJ122, LASAJ127 and LASAJ195 not available yet
K=future wave 2021-2022

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

Side studies in LASA

In two side studies in 2000 and 2010, after-death interviews with proxies were used. For more more information, go to eol side study.

References

  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. Degner LF, Sloan JA, Venkatesh P: The control preferences scale. Can J Nurs Res 1997, 29(3):21–43
  3. European Commission (2011). Demography Report 2010: Older, More Numerous and Diverse Europeans. Luxembourg, Publications Office of the European Union.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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: September 11, 2020 (LS)