Advertisement

Nutrition and Hydration in Palliative Care and Their Diverse Meanings

  • Jean B. ClarkEmail author
  • Lesley S. Batten
Reference work entry

Abstract

Essential for life, food and fluids are regarded as basic care, professionally, ethically, and legally. This chapter seeks to contextualize and explore the significance and meaning of compromised nutrition and hydration in contemporary adult palliative care. The internationalization of Western medicine, Western bioethics, and palliative care generates new perspectives and can challenge established practices. It is important that evidence of the relevance, efficacy, and appropriateness of artificially intervening in the natural course of terminal illnesses is developed; however, that knowledge will not necessarily resolve the issues associated with the reality that food and fluids mean different things to those involved.

Universally, food and fluid, its preparation, use, symbolism, and value are inherently meaningful. Discussions, opinions and decisions vary regarding supporting oral intake, and clinically assisted nutrition and hydration, particularly towards the end of life. Inevitably, the perspectives of the ill person, their companions, and informal and professional caregivers are not necessarily consistent or static.

Endeavors to address declining oral intake must be individualized, congruent with care goals, and cognizant of cultural values, religious, and personal beliefs. It is an aspect of care (and dying) that should not be taken for granted nor considered problematic. Rather, it is inevitable for many people and no lasting resolution should be anticipated or desired. Professional knowledge and curiosity towards the multiple meanings surrounding eating, food, nutrition, and hydration, and their meaning is the proposed aspiration.

References

  1. Amano K, Maeda I, Morita T, Okajima Y, Hama T, Aoyama M, et al. Eating-related distress and need for nutritional support of families of advanced cancer patients: a nationwide survey of bereaved family members. J Cachexia Sarcopenia Muscle. 2016;7:527–34.CrossRefGoogle Scholar
  2. Barrocas A. The troubling trichotomy 10 years later: where are we now. Nutr Clin Pract. 2016;31(3):295–304.CrossRefGoogle Scholar
  3. Bear AJ, Bukowy EA, Patel JJ. Artificial hydration at the end of life. Nutr Clin Pract. 2017;32(5):628–32.CrossRefGoogle Scholar
  4. Benedetti FD, Ostgathe C, Clark J, Costantini M, Daud ML, Grossenbacher-Gschwend B, et al. International palliative care experts’ view on phenomena indicating the last hours and days of life. Support Care Cancer. 2013;21(6):1509–17.  https://doi.org/10.1007/s00520-012-1677-3.CrossRefGoogle Scholar
  5. Buiting HM, van Delden JJM, Rietjens JAC, Onwuteaka-Philipsen BD, Bilsen J, Fischer S, et al. Forgoing artificial nutrition or hydration in patients nearing death in six European countries. J Pain Symptom Manag. 2007;34(3):305–14.CrossRefGoogle Scholar
  6. Bükki J, Unterpaul T, Nübling G, Jox RJ, Lorenzl S. Decision making at the end of life – cancer patients’ and their caregivers’ views on artificial nutrition and hydration. Support Care Cancer. 2014;22:3287–99.CrossRefGoogle Scholar
  7. Byron E, de Casterie BD, Gastman C. Nurses’ attitudes towards artificial food or fluid administration in patients with dementia and in terminally ill patients: a review of the literature. J Med Ethics. 2008;34(6):431–6.Google Scholar
  8. Chambaere K, Loodts I, Deliens L, Cohen J. Forgoing artificial nutrition or hydration at the end of life: a large cross-sectional survey in Belgium. J Med Ethics. 2014;40:501–4.CrossRefGoogle Scholar
  9. Chow R, Bruera E, Chiu L, Chow S, Chiu N, Lam H, et al. Enteral and parenteral nutrition in cancer patients: a systematic review and meta-analysis. Ann Palliat Med. 2016;5(1):30–41.PubMedGoogle Scholar
  10. Clark J, Raijmakers N, Allan S, van Zuylen L, van der Heide A. Declining oral intake towards the end of life: how to talk about it? A qualitative study. Int J Palliat Nurs. 2017;23(2):74–62.CrossRefGoogle Scholar
  11. Cohen M, Torres-Vigil I, Burbach BE, de la Posa A, Bruerea E. The meaning of parenteral hydration to family caregivers and patients with advanced cancer receiving hospice care. J Pain Symptom Manag. 2012;43(5):855–65.CrossRefGoogle Scholar
  12. del Rio MI, Shand B, Bonati P, Palma A, Maldonado A, Taboada P, Nervi F. Hydration and nutrition at the end of life: a systematic review of emotional impact, perceptions and decision-making amongst patients, families and health care staff. Psycho-Oncology. 2011;21(9):913–21.CrossRefGoogle Scholar
  13. Druml C, Ballmer PE, Druml W, Oehmichen F, Shenkin A, Singer P, et al. EPSN guideline on ethical aspects of artificial nutrition and hydration. Clin Nutr. 2016;35:545–56.CrossRefGoogle Scholar
  14. Evans WJ, Morley JE, Argile’s J, Bales C, Baracos V, Guttridge D, et al. Cachexia: a new definition. Clin Nutr. 2008;27:793–9.CrossRefGoogle Scholar
  15. Fallon M, Smyth J. Terminology: the historical perspective, evolution and current usage – room for confusion? Eur J Cancer. 2008;44:1069–71.CrossRefGoogle Scholar
  16. Fearon K, Strasser F, Anker SD, Bosaeus I, Bruera E, Fasinger RL, et al. Definition and classification of cancer cachexia: an international concensus. Lancet Oncol. 2011;12:489–95.CrossRefGoogle Scholar
  17. Ganzini L. Artificial nutrition and hydration at the end of life: ethics and evidence. Palliat Support Care. 2006;4:135–43.CrossRefGoogle Scholar
  18. Ganzini L, Goy ER, Miller LL, Harvath TA, Jackson A, Delorit MA. Nurses’ experiences with hospice patients who refuse food and fluids to hasten death. N Engl J Med. 2003;349:359–65.CrossRefGoogle Scholar
  19. Good P, Richard R, Syrmis W, Jenkins-Marsh S, Stephens J. Medically assisted hydration for adult palliative care patients (publication no. 10.1002/14651858.CD006273). The Cochrane Database of Systematic Reviews from Wiley. 2014.Google Scholar
  20. Hopkinson JB. Food connections: a qualitative exploratory study of weight-and eating-related distress in families affected by advanced cancer. Eur J Oncol Nurs. 2016;20:87–96.CrossRefGoogle Scholar
  21. Ivanović N, Büche D, Fringer A. Voluntary stopping of eating and drinking at the end of life – a ‘systematic search and review’ giving insight into an option of hastening death in capacitated adults at the end of life. Br Med J Palliat Care. 2014;13(1):1–8. http://www.biomedcentral.com/1472-684X/13/1.  https://doi.org/10.1186/1472-684X-13-1.
  22. Ke L, Chiu T, Hu W, Lo S. Effects of educational intervention on nurses’ knowledge, attitudes, and behavioral intentions toward supplying artificial nutrition and hydration to terminal cancer patients. Support Care Cancer. 2008a;16:1265–72.  https://doi.org/10.1007/s00520-008-0426-0.CrossRefGoogle Scholar
  23. Ke LS, Chiu TY, Lo SS, Hu WY. Knowledge attitudes and behavioral intentions of nurses toward providing artifical nutrition and hydration for terminal cancer patients in Taiwan. Cancer Nurs. 2008b;31(1):67–76.CrossRefGoogle Scholar
  24. Konishi E, Davis AJ, Aiba T. The ethics of withdrawing artificial food and fluid from terminally ill patients: an end of life dilemma for Japanese nurses and families. Nurs Ethics. 2002;9(1):7–19.CrossRefGoogle Scholar
  25. Kozeniecki M, Ewy M, Patel JJ. Nutrition at the end of life: It’s not what you say, it’s how you say it. Curr Nutr Rep. 2017;6(3):261–5.CrossRefGoogle Scholar
  26. Mercadante S, Ferrera P, Girello D, Casuccio A. Patients’ and relatives’ perceptions about subcutaneous hydration. J Pain Symptom Manag. 2005;30(4):354–8.CrossRefGoogle Scholar
  27. Millar C, Reid J, Porter S. Health care professionals’ response to cachexia in advanced cancer: a qualitative study. Oncol Nurs Forum. 2013;40(6):393–402.CrossRefGoogle Scholar
  28. Miyashita M, Morita T, Shima Y, Kimura R, Takahashi M, Adachi I. Nurses’ views of the adequacy of decision making and nurses’ distress regarding artificial hydration for terminally ill cancer patients: a nationwide survey. Am J Hosp Palliat Care. 2008.Google Scholar
  29. Morgan M. Beautiful veins. Wollongong: Five Islands Press; 1999.Google Scholar
  30. Morita T, Shima Y, Adaci I. Attitudes of Japanese physicians towards terminal dehydration: a nationwide survey. J Clin Oncol. 2002;20(24):4699–704.CrossRefGoogle Scholar
  31. O’Hara P. The management of nutrition for palliative care patients. Links Health Soc Care. 2017;2(1):21–38.Google Scholar
  32. Orrevall Y. Nutritional support at the end of life. Nutrition. 2015;31:615–6.CrossRefGoogle Scholar
  33. Orrevall Y, Tishelman C, Permert J. Home parenteral nutrition: a qualitative interview study of the experiences of advanced cancer patients and their families. Clin Nutr. 2005;24:941–70.CrossRefGoogle Scholar
  34. Penner JL, McClement S, Lobchuck M, Daeninck P. Family members’ experiences caring for patients with advanced head and neck cancer recieving tube feeding: a descriptive phenomological study. J Pain Symptom Manag. 2012;44(4):563–51.CrossRefGoogle Scholar
  35. Raijmakers NJH, van Zuylen L, Costantini M, Caraceni A, Clark J, Lundquist G, et al. Artificial hydration and nutrition in the last week of life in cancer patients. A systematic review of practices and effects. Ann Oncol. 2011;22(7):1477–86.CrossRefGoogle Scholar
  36. Raijmakers NJH, Clark JB, van Zuylen L, Allan S, van der Heide A. Bereaved family members’ perspectives of the patient’s oral intake towards the end of life. Palliat Med. 2013;27(7):665–72.CrossRefGoogle Scholar
  37. Reid J, McKenna H, Fitzsimons D, McCance T. The experience of cancer cachexia: a qualitative study of advanced cancer patients and their family members. Int J Nurs Stud. 2009a;46:606–16.CrossRefGoogle Scholar
  38. Reid J, McKenna H, Fitzsimons D, McCance T. Fighting over food: patient and family understanding of cancer cachexia. Oncol Nurs Forum. 2009b;36(4):439–45.CrossRefGoogle Scholar
  39. Reid J, McKenna HP, Fitzsimons D, McCance TV. An explorations of the experience of cancer cachexia: what patients and their families want from health professionals. Eur J Cancer Care. 2010;19(682–689):682–9.CrossRefGoogle Scholar
  40. Royal College of Physicians and British Society of Gastroenterology. Oral feeding difficulties and dilemmas: a guide to practical care, particularly towards the end of life. London: Royal College of Physicians; 2010.Google Scholar
  41. Rozin P. The meaning of food in our lives: a cross-cultural perspective on eating and well-being. J Nutr Educ Behav. 2005;37(2):107–12.CrossRefGoogle Scholar
  42. Stiles E. Providing artificial nutrition and hydration in palliative care. Nurs Stand. 2013;27(20):35–42.CrossRefGoogle Scholar
  43. Torres-Vigil I, Mendoza TR, Alonso-Babarro A, DeLima L, Cardenas-Turanzas M, Hernandez M, et al. Practice patterns and perceptions about parenteral hydration in the last weeks of life: a survey of palliative care physicians in Latin America. J Pain Symptom Manag. 2012;43(1):47–58.CrossRefGoogle Scholar
  44. Truog RD. Withholding and withdrawing life sustaining treatments. In: Quill ET, Miller FG, editors. Palliative care and ethics. Oxford: Oxford University Press; 2014. p. 187–98.Google Scholar
  45. Truog RD, Brown SD, Browning D, Hundert EM, Rider EA, Bell SK, Myer EC. Microethics: the ethics of everyday clinical practice. Hast Cent. 2015;45(1):11–7.  https://doi.org/10.1002/hast.413.CrossRefGoogle Scholar
  46. van der Riet P, Good P, Higgins I, Sneesby L. Palliative care professionals’ perceptions of nutrition at the end of life. Int J Palliat Nurs. 2008;14(3):145–51.CrossRefGoogle Scholar
  47. Vassilyadi F, Panteliadou A, Panteliadis C. Hallmarks in the history of enteral and parenteral nutrition: from antiquity to the 20th century. Nurtr Clin Pract. 2013;28(2):209–17.CrossRefGoogle Scholar
  48. Wallin V, Carlander I, Sandman PO, Ternestedt BM, Hakanson C. Maintaining ordinariness around food: partners’ experiences of everyday life with a dying person. J Clin Nurs. 2013;23:2748–56.CrossRefGoogle Scholar
  49. Wallin V, Carlander I, Sandman PO, Hakanson C. Meanings of eating deficiencies for people admitted to palliative home care. Palliat Support Care. 2015;13:1231–9.CrossRefGoogle Scholar
  50. Watson M, Lucas C, Hoy A, Wells J. Oxford handbook of palliative care. 2nd ed. Oxford: Oxford University Press; 2009.Google Scholar
  51. Wax JW, An AW, Kosier N, Quill TE. Voluntary stopping eating and drinking. J Am Geriatr Soc. 2018;66:441–5.  https://doi.org/10.1111/jgs.15200.CrossRefPubMedGoogle Scholar
  52. World Health Organization. National cancer control programmes: policies and managerial guidelines. Geneva: World Health Organization; 2002.Google Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  1. 1.Hospital Palliative Care Service Palmerston North HospitalMidCentral HealthPalmerston NorthNew Zealand
  2. 2.School of NursingMassey UniversityPalmerston NorthNew Zealand
  3. 3.College of HealthMassey UniversityPalmerston NorthNew Zealand

Personalised recommendations