The last three months of life: After-death data from proxies (ancillary study)

The last three months of life: After-death data from  proxies (ancillary study)

Contact: Roeline Pasman

Data from  close relatives/friends of deceased LASA participants
In 2000, 2010 and 2020, the end-of-life care of LASA participants who had died in the previous 3-5 years (1995-1999 and 2005-2009 and 2017-2019 respectively) was ascertained via an after death interview (2000) or written questionnaires (2010 and 2020) with proxies (close relatives/friends of the deceased). Contact information for close relatives/friends and GPs of LASA participants is available in the LASA database.

Proxies were asked about the LASA participant’s:

  • Cause of death
  • Place of death
  • Place of care (three months and three days before death)
  • Satisfaction with end-of-life care
  • Mood in the last week of life
  • Medical end-of-life treatment preferences
  • Physical functioning three months before death
  • Physical symptoms in the last week of life
  • Cognitive functioning (three months and three days before death)
  • Possession of an advance directive

Proxies were also asked about their own role in end-of-life care and treatment decisions. (references Klinkenberg and Kaspers)

In 2020 also questions about the proxy him/herself were added about:

  • The amount and characteristics of care provided to the LASA participant in the last period of life
  • The experiences of providing care to the LASA participant in the last period of life
  • Changes in life of the proxy after the LASA participant had died
  • Grief

Some results
Research of Pasman, Kaspers, Deeg and Onwuteaka-Philipsen (2013) shows there is a high concordance between preferred and actual treatment in older adults who prefer treatment, whereas the concordance in people who prefer no treatment is lower. Making preferences for forgoing treatment is useful, since it increases the chance of treatments being forgone in those who wish so. The study of Klinkenberg et al. (2004) employed after-death interviews with proxies and concluded that predictors positively associated with expressing a preference regarding medical care at the end of life were co-morbidity, dying from cancer and PSE, whereas being religious was negatively associated with expressing a preference. Furthermore, the majority of older persons had died without either an AD or having expressed preferences for end-of-life care.

References/ publications written from these data

  1. Kaspers PJ, Pasman HRW, Onwuteaka-Philipsen BD, Deeg DHJ. Changes over a decade in end-of-life care and transfers during the last 3 months of life: A repeated survey among proxies of deceased older people.  Palliat Med. 2013 Jun;27(6):544-52. doi: 10.1177/0269216312457212
  2. Kaspers PJ, Onwuteaka-Philipsen BD, Deeg DJH, Pasman HR. Decision-making capacity and communication about care of older people during their last three months of life. BMC Palliat Care. 2013 Jan 10;12:1. doi: 10.1186/1472-684X-12-1
  3. Klinkenberg M, Willems DL, Onwuteaka-Philipsen BD, Deeg DJH, van der Wal G. Preferences in end-of-life care of older persons: after-death interviews with proxy respondents. Soc Sci Med. 2004 Dec;59(12):2467-77.
  4. Klinkenberg M, Willems DL, van der Wal G, Deeg DJH. Symptom burden in the last week of life. J Pain Symptom Manage. 2004 Jan;27(1):5-13.
  5. Klinkenberg M, Smit JH, Deeg DJ, Willems DL, Onwuteaka-Philipsen BD, van der Wal G. Proxy reporting in after-death interviews: The use of proxy respondents in retrospective assessment of chronic diseases and symptom burden in the terminal phase of life. Palliat Med. 2003 Mar; 17(2):191-201.
  6. Klinkenberg M, Visser G, van Groenou MI, van der Wal G, Deeg DJ, Willems DL. The last 3 months of life: care, transitions and the place of death of older people. Health Soc Care Community. 2005 Sep;13(5):420-30.
  7.  Pasman HR, Kaspers PJ, Deeg DJ, Onwuteaka-Philipsen BD. Preferences and actual treatment of older adults at the end of life. A mortality follow-back study. J Am Geriatr Soc. 2013 Oct;61(10):1722-9. doi: 10.1111/jgs.12450. PMID: 24117287.
  8. van Gennip IE, Pasman HR, Kaspers PJ, Oosterveld-Vlug MG, Willems DL, Deeg DJ, Onwuteaka-Philipsen BD. Death with dignity from the perspective of the surviving family: a survey study among family caregivers of deceased older adults. Palliat Med. 2013 Jul;27(7):616-24. doi: 10.1177/0269216313483185. Epub 2013 Apr 11.


Date of last update: February, 2022