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

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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 (χ 2 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 (χ 2 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.

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Acknowledgments

The authors are indebted to Alexander Crispin and Piret Paal for their statistical support and Anne Bäumler, Moira Hasenfuss and Elisabeth Riedl for translating the questionnaire backward and forward.

The study has been funded by a grant from the “Stifterverband für die Deutsche Wissenschaft” (Association of Founders of Science in Germany).

Conflict of interest

The authors declare that there is no conflict of interest. In particular, there has not been any personal involvement of any of the authors with the funding agency. All authors have full control of the primary data and they agree to allow the journal to review their data if requested.

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Authors and Affiliations

  1. Endowed Professorship for Interdisciplinary Research in Palliative Care, Institute of Nursing Science and –Practice, Paracelsus Medical University, Strubergasse 21, 5020, Salzburg, Austria

    J. Bükki & S. Lorenzl

  2. Department of Palliative Medicine, Munich University Hospital, Marchioninistr. 15, 81377, Munich, Germany

    J. Bükki, T. Unterpaul, G. Nübling, R. J. Jox & S. Lorenzl

  3. Hospice Care DaSein, Munich, Karlstr. 56-58, 80333, Munich, Germany

    J. Bükki

  4. Department of Neurology, Munich University Hospital, Marchioninistr. 15, 81377, Munich, Germany

    G. Nübling

  5. Institute of Ethics, History and Theory of Medicine, University of Munich, Lessingstr. 2, 80336, Munich, Germany

    R. J. Jox

Authors
  1. J. Bükki
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  2. T. Unterpaul
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  3. G. Nübling
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  4. R. J. Jox
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  5. S. Lorenzl
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Corresponding author

Correspondence to J. Bükki.

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Bükki, J., Unterpaul, T., Nübling, G. et al. Decision making at the end of life—cancer patients’ and their caregivers’ views on artificial nutrition and hydration. Support Care Cancer 22, 3287–3299 (2014). https://doi.org/10.1007/s00520-014-2337-6

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  • DOI: https://doi.org/10.1007/s00520-014-2337-6

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