End of life

End-of-life care and preferences

LASAD093

LASA*094

LASAI108

LASA*122

LASAI127

LASAF146

LASAG148

LASA*195

LASAD709

 

Contact: Roeline Pasman

 

Background
In the Netherlands, about 140.000 people die each year. About one third of these people die unexpectedly, for instance due to an accident or heart attack. For the other people death is more or less foreseen. 80% of deceased people whose death is foreseen, are aged over 65, and half are aged over 80. (Van der Heide et al, 2012). 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). 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 E, F, G, H and I (LASA*122), respondents were asked whether they could imagine requesting their physician to end their life (euthanasia), 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).  (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 and I, 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 and I,  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, the questions derived from the Paykel scale (see LASAF195) about feelings and wishes about life and death were asked again (eol07-11 in LASAI127, under construction) . Furthermore, new questions about Advanced Care Planning (ACP) were asked (LASAI108, under construction).

 

Questionnaires
LASAD093 (main interview, in Dutch);
PFLT in LASAG094 / LASAH094 / LASAI094 (main interview, in Dutch);
LASAI108 (self-administered questionnaire, in Dutch, under construction);
LASAB122 / LASAC122 / LASAD122 / LASAE122 / LAS2B122 / LASAF122 / LASAG122 / LASAH122 / LAS3B122 / LASAI122 (self-administered questionnaire, in Dutch);
LASAI127 (self-administered questionnaire, in Dutch, under construction);
LASAF146 (self-administered questionnaire, in Dutch);
LASAG148 (self-administered questionnaire, in Dutch);
LASAF195 / LASAG195 / LASAH195 / LASAI195 (medical interview, in Dutch);
LASAD709 (telephone interview with RESP, in Dutch)

Variable information
LASAD093
(pdf);
PFLT in LASAG094 / LASAH094 / LASAI094 (LASAI094 under construction)
(pdf);
LASAI108
(pdf, under construction);
LASAB122 / LASAC122 / LASAD122 / LASAE122 / LAS2B122 / LASAF122 / LASAG122 / LASAH122 / LAS3B122 / LASAI122 (LASAI122 under construction)
(pdf);
LASAI127
(pdf, under construction);
LASAF146
(pdf);
LASAG148
(pdf);
LASAF195 / LASAG195 / LASAH195 / LASAI195 (LASAI195 under construction)
(pdf);
LASAD709
(pdf)

Availability of information per wave  1

 

 

B

C

D

E

 

2B*

F

G

H

 

 

3B*

MB*

I**

Advance directives (AD): possession

 

 

Ma 093

Tr

709

 

 

Me 195

Me 195

Me 195

 

 

Me 195

Family physician informed about AD

 

 

Ma 093

Tr

709

 

 

 

 

 

 

 

 

Other persons informed about AD

 

 

Ma 093

Tr

709

 

 

 

 

 

 

 

 

Appointed proxy in case of incompetence (about AD) 

 

 

Ma 093

Tr

709

 

 

Me 195

Me 195

Me 195

 

 

Me 195

Discussed EOL-choices with family physician

 

 

Ma 093

Tr

709

 

 

Me 195

 Me 195

Me 195

 

 

Me 195

Discussed EOL-choices with other persons

 

 

 

 

 

Me 195

Me 195

Me 195

 

 

Me 195

Could imagine requesting euthanasia (to doctor)

 

 

Ma 093

Tr

709

Sa

122

 

Sa

122

Sa

122

Sa

122

Sa

122

 

Sa

122

Reasons participant would request euthanasia

 

 

Ma 093

Tr

709

 

 

 

 

 

 

 

 

Trust in doctors to respect end-of-life wishes

 

 

 

 

 

Me 195

Me 195

Me 195

 

 

Me 195

Trust in doctors to provide good end-of-life care

 

 

 

 

 

Me 195

Me 195

Me 195

 

 

Me 195

Trust doctors/nurses towards eol-wishes

 

 

Ma 093
Tr

709

 

 

 

 

 

 

 

 

Feelings and wishes about life and death (Paykel)

 

 

 

 

 

Me 195

 

 

 

 

Sa 127***

 

Believes suicide medication must be available

 

 

 

 

 

Sa

122

 

Me 195

Sa

122

 

 

Sa

122

 

 

Sa

122

 

 

Sa

122

 

 

 

Sa

122

Imagine suicide medication in possession

 

 

 

 

 

Sa

122

 

Me 195

Sa

122

 

 

Sa

122

 

 

Sa

122

 

 

Sa

122

 

 

 

 

 

Sa

122

Circumstances for taking suicide medication

 

 

 

 

 

Me 195

 

 

 

 

 

Usage suicide medication within few months

 

 

 

 

 

Me 195

 

 

 

 

 

Opinion about request to doctor to end someone’s life

Sa

122

Sa

122

Sa

122

Sa

122

Sa

122

Sa

122

Sa

122

Sa

122

Sa

122

 

Sa

122

Medical end-of-life treatment preferences in case of cancer and dementia

 

 

 

 

 

 

Sa

148

 

 

 

 

General end of life goals (Evans)

 

 

 

 

 

 

Ma 094

Ma 094

 

 

Ma 094

Preferred involvement in decision making in eol-situations (CPS)

 

 

 

 

 

 

Sa

148

 

 

 

 

If I die, I hope…

 

 

 

 

 

Sa

146

 

 

 

 

 

(Intentions to) Advanced Care Planning (ACP) (10 items)

 

 

 

 

 

 

 

 

 

 

Sa 108***

 

B

C

D

E

 

2B*

F

G

H

 

 

3B*

MB*

I**

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

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

** cycle I = under construction

*** files to be constructed, names reserved

 

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 http://www.lasa-vu.nl/themes/care/eol-side-study.html.

 

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. Van der Heide, A., Brinkman-Stoppelenburg, A., Van Delden, J.J.H., & Onwuteaka-Philipsen, B.D. (2012). Euthanasie en andere medische beslissingen rond het levenseinde. Sterfgevallenonderzoek 2010. ZonMw, Den Haag.