gms | German Medical Science

15. Deutscher Kongress für Versorgungsforschung

Deutsches Netzwerk Versorgungsforschung e. V.

5. - 7. Oktober 2016, Berlin

Aggressiveness of care at end of life in cancer patients is associated with decisional regret and complicated grief in bereaved caregivers

Meeting Abstract

  • Markus W. Haun - Medizinische Klinik II, Klinik für Allgemeine Innere Medizin und Psychosomatik, Universitätsklinikum Heidelberg, Heidelberg, Deutschland
  • Linda Söderberg - Medizinische Klinik II, Klinik für Allgemeine Innere Medizin und Psychosomatik, Universitätsklinikum Heidelberg, Heidelberg, Deutschland
  • Nikolaus Becker - AG Epidemiologische Grundlagen der Krebsprävention, Deutsches Krebsforschungszentrum (DKFZ), Heidelberg, Deutschland
  • Wolfgang Herzog - Medizinische Klinik II, Klinik für Allgemeine Innere Medizin und Psychosomatik, Universitätsklinikum Heidelberg, Heidelberg, Deutschland
  • Mechthild Hartmann - Medizinische Klinik II, Klinik für Allgemeine Innere Medizin und Psychosomatik, Universitätsklinikum Heidelberg, Heidelberg, Deutschland

15. Deutscher Kongress für Versorgungsforschung. Berlin, 05.-07.10.2016. Düsseldorf: German Medical Science GMS Publishing House; 2016. DocFV18

doi: 10.3205/16dkvf044, urn:nbn:de:0183-16dkvf0449

Veröffentlicht: 28. September 2016

© 2016 Haun et al.
Dieser Artikel ist ein Open-Access-Artikel und steht unter den Lizenzbedingungen der Creative Commons Attribution 4.0 License (Namensnennung). Lizenz-Angaben siehe http://creativecommons.org/licenses/by/4.0/.


Gliederung

Text

Background: Aggressiveness of care comprises intensive use of chemotherapy, and/or intensive care unit (ICU) admissions at end of life in cancer patients. In western countries there is a trend towards more aggressive care in terminally ill patients [1]. In contrast, there is emerging evidence that in patients with progressing metastatic disease aggressive care is not linked to longer survival [2]. And even more important, chemotherapy near end of life does not help patients to live better [3]. To date, the caregiver perspective has rarely been investigated. Within an observational study, we aimed to investigate 1) the prevalence of aggressiveness of care (AOC) in Germany and 2) possible long-term consequences for caregivers, i.e. the association between AOC and decisional regret and distress in the bereaved caregivers.

Method: We identified 1141 bereaved caregivers of cancer patients from the Cancer Registry of the National Center for Tumor Diseases (NCT) Heidelberg, Germany. Tumour types were restricted to colon, pancreatic, lung, breast, and prostate cancer. Patients had died between July 2012 and December 2014. All adult caregivers who were able to give informed consent were eligible. Exclusion criteria comprised a time period of less than six months between the patient’s death and enrolment of the bereaved. We assessed AOC applying the empirically-derived indicators introduced by Earle et al. [4]. Decisional regret was measured with the Decision Regret Scale (DRS), depression/anxiety with the PHQ-9 and GAD-7, and complicated grief was assessed with the Inventory of Complicated Grief (ICG). Covariates included sociodemographic variables and tumour type.

Results: The approached sample amounted to 663 eligible subjects with a subsequent completion rate of 47.7%. Hence, the completed sample size for 316 individuals composed the data set for statistical analysis. Most common reasons for non-participation were unknown (28.5%); others included being too distressed by grief (14.2%), lack of interest (3.5%), and having “closed the matter” (3.0%). With respect to the prevalence of AOC, 26.3% of all patients had received chemotherapy within 14 days of death, and/or a new chemotherapy regimen within 30 days of death, and/or had been admitted to ICU in the last month of life. Bereaved caregivers who had witnessed AOC exhibited higher levels of decision regret (d = 0.34; 95% CI [0.07, 0.61]) and complicated grief (d = 0.36; 95% CI [0.09, 0.63]). For depression and anxiety, we found no significant differences between AOC and non-AOC caregivers.

Discussion: To our best knowledge, we present the first data on aggressiveness of care in cancer patients in Germany. Our results show that, during their last days of life, one in four patients receive intense treatment that is questionable with regard to longer survival or improvement of quality of life. This proportion is slightly higher when compared to Medicare claims data from US regions ([5]). However, our sample covered bereaved caregivers of patients who had often received their entire treatment in a tertiary comprehensive cancer centre. Furthermore, with survey participation on a volunteer basis, there is a higher risk of self-selection and sampling error. First, our findings might therefore not be generalizable to the whole population of advanced cancer patients in Germany. At this point, it remains unresolved if patients treated in smaller facilities might undergo less intensive treatment at the end of life. Second, the cross-sectional study design impedes causal inferences from between-group comparisons at a single time point. It is possible that caregivers prone to feel regret and complicated grief actively influence treatment intensity at end of life of patients.

Implication: The present findings indicate that a large proportion of cancer patients receive intensive treatment at the end of life which has been questioned in its benefit on survival and quality of life. This observation points to an important challenge for optimising process and outcome quality of end of life care in Germany. Furthermore, our study adds that AOC is associated with long-lasting distress in caregivers. To clarify 1) prevalence of AOC representative for a broader population of cancer patients, 2) pathways to aggressiveness of care within the disease trajectory, and 3) a potential causal link between AOC and regret and complicated grief in the bereaved, we are now in the need for a prospective cohort study following up on a defined sample of advanced cancer patients and their caregivers.

Sponsor: German Research Foundation (DFG) (Grant ID: HA 7536/1-1) as part of third Early Career Investigators Workshop in Health Services Research 2014


References

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