Supportive Care in Cancer

, Volume 22, Issue 12, pp 3287–3299 | Cite as

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

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 

References

  1. 1.
    Domeisen Benedetti F, Ostgathe C, Clark J, Costantini M, Daud ML, Grossenbacher-Gschwend B et al (2013) International palliative care experts’ view on phenomena indicating the last hours and days of life. Support Care Cancer 21(6):1509–17PubMedCrossRefGoogle Scholar
  2. 2.
    Raijmakers NJ, van Zuylen L, Costantini M, Caraceni A, Clark J, Lundquist G et al (2011) Artificial nutrition and hydration in the last week of life in cancer patients. a systematic literature review of practices and effects. Ann Oncol 22(7):1478–86PubMedCrossRefGoogle Scholar
  3. 3.
    Prevost V, Grach MC (2012) Nutritional support and quality of life in cancer patients undergoing palliative care. Eur J Cancer Care Engl 21(5):581–90PubMedCrossRefGoogle Scholar
  4. 4.
    Bruera E, Hui D, Dalal S, Torres-Vigil I, Trumble J, Roosth J et al (2013) Parenteral hydration in patients with advanced cancer: a multicenter, double-blind, placebo-controlled randomized trial. J Clin Oncol 31(1):111–8PubMedCentralPubMedCrossRefGoogle Scholar
  5. 5.
    Cohen MZ, Torres-Vigil I, Burbach BE, de la Rosa A, Bruera E (2012) The meaning of parenteral hydration to family caregivers and patients with advanced cancer receiving hospice care. J Pain Symptom Manag 43(5):855–65CrossRefGoogle Scholar
  6. 6.
    Malia C, Bennett MI (2011) What influences patients’ decisions on artificial hydration at the end of life? A Q-methodology study. J Pain Symptom Manag 42(2):192–201CrossRefGoogle Scholar
  7. 7.
    Morita T, Shima Y, Miyashita M, Kimura R, Adachi I (2004) Physician- and nurse-reported effects of intravenous hydration therapy on symptoms of terminally ill patients with cancer. J Palliat Med 7(5):683–93PubMedCrossRefGoogle Scholar
  8. 8.
    Raijmakers NJ, Fradsham S, van Zuylen L, Mayland C, Ellershaw JE, van der Heide A (2011) Variation in attitudes towards artificial hydration at the end of life: a systematic literature review. Curr Opin Support Palliat Care 5(3):265–72PubMedCrossRefGoogle Scholar
  9. 9.
    Chiu TY, Hu WY, Chuang RB, Cheng YR, Chen CY, Wakai S (2004) Terminal cancer patients’ wishes and influencing factors toward the provision of artificial nutrition and hydration in Taiwan. J Pain Symptom Manag 27(3):206–14CrossRefGoogle Scholar
  10. 10.
    Morita T, Miyashita M, Shibagaki M, Hirai K, Ashiya T, Ishihara T et al (2006) Knowledge and beliefs about end-of-life care and the effects of specialized palliative care: a population-based survey in Japan. J Pain Symptom Manag 31(4):306–16CrossRefGoogle Scholar
  11. 11.
    Van der Riet P, Brooks D, Ashby M (2006) Nutrition and hydration at the end of life: pilot study of a palliative care experience. J Law Med 14(2):182–98PubMedGoogle Scholar
  12. 12.
    Raijmakers NJ, van Zuylen L, Costantini M, Caraceni A, Clark JB, De Simone G et al (2012) Issues and needs in end-of-life decision making: an international modified Delphi study. Palliat Med 26(7):947–53PubMedCrossRefGoogle Scholar
  13. 13.
    Jox RJ, Krebs M, Fegg M, Reiter-Theil S, Frey L, Eisenmenger W et al (2010) Limiting life-sustaining treatment in German intensive care units: a multiprofessional survey. J Crit Care 25(3):413–9PubMedCrossRefGoogle Scholar
  14. 14.
    Idler E (1987) Religious involvement and the health of the elderly: some hypotheses and an initial test. Soc Forces 66(1):226–38CrossRefGoogle Scholar
  15. 15.
    Zikmund-Fisher BJ, Sarr B, Fagerlin A, Ubel PA (2006) A matter of perspective: choosing for others differs from choosing for yourself in making treatment decisions. J Gen Intern Med 21(6):618–22PubMedCentralPubMedCrossRefGoogle Scholar
  16. 16.
    Kuehlmeyer K, Borasio GD, Jox RJ (2012) How family caregivers’ medical and moral assumptions influence decision making for patients in the vegetative state: a qualitative interview study. J Med Ethics 38(6):332–7PubMedCentralPubMedCrossRefGoogle Scholar
  17. 17.
    Jox RJ, Krebs M, Bickhardt J, Hessdorfer K, Roller S, Borasio GD (2008) How strictly should advance decisions be followed? the patients’ opinion. Palliat Med 22(5):675–6PubMedCrossRefGoogle Scholar
  18. 18.
    Mercadante S, Ferrera P, Girelli D, Casuccio A (2005) Patients’ and relatives’ perceptions about intravenous and subcutaneous hydration. J Pain Symptom Manag 30(4):354–8CrossRefGoogle Scholar
  19. 19.
    Rabkin J, Ogino M, Goetz R, McElhiney M, Marziliano A, Imai T et al (2013) Tracheostomy with invasive ventilation for ALS patients: neurologists’ roles in the US and Japan. Amyotroph Lateral Scler Frontotemporal Degener 14(2):116–23PubMedCrossRefGoogle Scholar
  20. 20.
    German Medical Association principles of care of the dying [Grundsätze der Bundesärztekammer zur ärztlichen Sterbebegleitung]. Deutsches Ärzteblatt. 2004;101 (19):1298–9.Google Scholar
  21. 21.
    Del Rio MI, Shand B, Bonati P, Palma A, Maldonado A, Taboada P et al (2012) Hydration and nutrition at the end of life: a systematic review of emotional impact, perceptions, and decision-making among patients, family, and health care staff. Psychooncology 21(9):913–21PubMedCrossRefGoogle Scholar

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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