Supportive Care in Cancer

, Volume 22, Issue 12, pp 3287–3299

Decision making at the end of life—cancer patients’ and their caregivers’ views on artificial nutrition and hydration

  • J. Bükki
  • T. Unterpaul
  • G. Nübling
  • R. J. Jox
  • S. Lorenzl
Original Article

DOI: 10.1007/s00520-014-2337-6

Cite this article as:
Bükki, J., Unterpaul, T., Nübling, G. et al. Support Care Cancer (2014) 22: 3287. doi:10.1007/s00520-014-2337-6

Abstract

Purpose

Deciding on artificial nutrition and hydration (ANH) at the end of life (EoL) may cause concerns in patients and their family caregivers but there is scarce evidence regarding their preferences. Therefore, the aim of this study was to assess the impact of factors associated with ANH decision making.

Methods:

Prospective, Cross-sectional survey. Adult patients admitted to hospital for symptoms of advanced cancer as well as their family caregivers completed a self-administered questionnaire. Items included personal views and concerns about ANH. Family caregivers additionally recorded their preference for their loved one and, if applicable, previous experience with ANH decisions.

Results

Thirty-nine out of sixty-five patients and 30/72 relatives responded. Higher age of the patient was significantly correlated with both the patient’s and the relative’s decision to forgo ANH (Kruskal-Wallis test, p < 0.01). Thirty-nine percent of patients, 37 % of relatives if deciding for themselves, and 24 % of relatives if deciding on behalf of their loved one opted against ANH; 36, 40 and 52 % preferred artificial hydration (AH) only (χ2 test, p <0.001), while 23, 23 and 24 %, respectively, wished to receive ANH. Patients felt more confident about decisions on artificial nutrition (AN) than caregivers (T test, p < 0.05) and less concerned about adverse effects of forgoing ANH on pain, agitation and sensation of hunger and thirst (χ2 test, p < 0.05). Satisfaction of patients with communication regarding forgoing ANH (5.0 ± 2.8 on a Likert scale from 0 to 10) correlated with their confidence (Spearman’s rho, p < 0.01). A thorough consultation with the attending physician on ANH issues was the favoured source of support for 77 % of patients and 97 % of relatives. A majority of patients considered their relatives’ opinion (67 %) and their own advance directives (62 %) as crucial for making ANH decisions, and 46 % of them had such a document completed.

Conclusion

Cancer patients and their relatives have similar preferences regarding ANH at the EoL, but relatives are reluctant to withhold AH if deciding for their loved one. While patients seem to be confident with ANH decision making, their caregivers may particularly benefit from discussing ANH options to dissipate fears.

Keywords

Decision making Caregivers Artificial nutrition and hydration Advance care planning Questionnaire 

Copyright information

© Springer-Verlag Berlin Heidelberg 2014

Authors and Affiliations

  • J. Bükki
    • 1
    • 2
    • 3
  • T. Unterpaul
    • 2
  • G. Nübling
    • 2
    • 4
  • R. J. Jox
    • 2
    • 5
  • S. Lorenzl
    • 1
    • 2
  1. 1.Endowed Professorship for Interdisciplinary Research in Palliative Care, Institute of Nursing Science and –PracticeParacelsus Medical UniversitySalzburgAustria
  2. 2.Department of Palliative MedicineMunich University HospitalMunichGermany
  3. 3.Hospice Care DaSeinMunichGermany
  4. 4.Department of NeurologyMunich University HospitalMunichGermany
  5. 5.Institute of Ethics, History and Theory of MedicineUniversity of MunichMunichGermany

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