Older adults' preferences for and actual situations of artificial hydration and nutrition in end-of-life care: An 11-year follow-up study in a care home

Abstract

Aim: To clarify older adults' preferences for and actual situations of artificial hydration and nutrition (AHN) in end-of-life care in a care home.

Methods: Participants were residents of a care home who had completed advance directives regarding preferred methods of AHN from 2009 to 2018. Advance directives alone were available from April 2009 to June 2016 (Wave 1), and advance care planning for AHN including advance directives was introduced in July 2016 (Wave 2). AHN preferences included (i) intensive methods (percutaneous endoscopic gastrostomy, nasogastric tube feeding and total parenteral nutrition), (ii) drip infusion, and (iii) oral intake only. Participants were followed until the end of 2020, and we checked whether decisions about AHN were based on older adults' preferences.

Results: In total, 272 participants had completed advance directives. Most participants preferred "oral intake only" (59.5%), followed by drip infusion (32.0%) and intensive methods (8.5%) in advance directives. Ninety of the 272 participants completed advance directives twice; 83.3% did not change their AHN preferences from Wave 1 to Wave 2. By the end of 2020, 93 of the 272 participants died in the care home. AHN was provided according to older adults' preferences in 48.9% (oral intake only), in 51.4% (drip infusion) and in 55.6% (intensive methods) of cases respectively.

Conclusions: Most participants preferred oral intake only, and their preferences were reflected in decisions about actual situations of AHN in end-of-life care. To prepare for advanced dementia and senility, early advance care planning for AHN should be promoted. Geriatr Gerontol Int 2022; 22: 581-587.

Keywords: advance care planning; advance directives; artificial hydration and nutrition; end-of-life care; preferences.

Figure 1

Feeding methods. (1) Percutaneous endoscopic gastrostomy. A hole is opened in the stomach via endoscopic surgery. Advantages: it is an excellent nutritional method, as nutrients are absorbed from the intestinal tract. Less risk of infection than central thoracic parenteral nutrition. If semi‐solid nutrition is used, the caregiver can finish the injection in about 5–10 min. If organ function is normal, it is possible to extend the life of patients by several years. Drawbacks: there is a risk of aspiration pneumonia due to regurgitation of nutritional supplements and chronic misalignment. At first, a minor operation is performed with a gastrocamera. The gastrostomy button needs to be replaced approximately every 6 months. It may be difficult to secure a caregiver because it is often possible to extend the patients' life for several years. (2) Nasogastric tube feeding. A tube is inserted through the nose into the stomach. Advantages: it is an excellent nutritional method, as nutrients are absorbed from the intestinal tract. Less risk of infection than central thoracic parenteral nutrition. No surgery is required. Drawbacks: as semi‐solid nutrition cannot be used, it is necessary to infuse liquid food over 1–2 h. Because of the use of thin and long tubes, they may become obstructed. Tubes need to be replaced every 2–4 weeks, and there is considerable discomfort during insertion each time. There is a risk of aspiration pneumonia due to regurgitation of nutritional supplements and chronic misalignment. The tubes may be accidentally removed. (3) Total parenteral nutrition through a central venous catheter (requires a minor surgery). Advantages: in addition to hydration, patients can be fed sufficient calories. Drawbacks: there is a risk of local infection, and sepsis can occasionally occur. The catheter may be accidentally pulled out. Minor surgery is required. Reoperation is required in the case of obstruction. (4) Drip infusion through peripheral intravenous catheter (water and limited nutrition). Advantages: patients can be easily rehydrated. Subcutaneous infusion is possible even when it is difficult to secure blood vessels. Drawbacks: it is not possible to supply the nutrition necessary for life support. The catheter may be accidentally pulled out. Intravenous drip may leak. Edema may become serious. (5) Oral intake only. Advantages: patients can live naturally according to their desire to eat by mouth. The occurrence of edema is low because water is taken within the range of motivation and swallowing function. Drawbacks: there is a risk of aspiration pneumonia if the caregiver actively brings food to the mouth or due to poor oral hygiene. The risk of aspiration is particularly high if the patient is using sleeping pills or sedatives. Inability to supply the nutrients and water needed to sustain life.

Figure 2

Kaplan–Meier survival estimates for the intensive method group, drip intravenous infusion group and oral intake only group. Green: oral intake only (N = 162); Red: drip infusion through peripheral intravenous catheter (N = 87); Blue: intensive methods = percutaneous endoscopic gastrostomy + nasogastric tube feeding + total parenteral nutrition through a central venous catheter (N = 23). Log‐rank test P = 0.09. AD, advance directives.