I recently posted the story of Raymond, a helpless demented patient whose loved ones, knowing that he had no quality of life, decided to discontinue oral feedings.
A variation on the theme of nutritional support involves feeding tubes. For patients who cannot ingest calories orally, a feeding tube can be placed. This is a surprisingly easy and a relatively safe procedure involving a small incision in the abdominal wall, a puncture of the stomach, and insertion of a flexible, hollow tube. The tube is secured, and a liquid diet, in caloric amounts sufficient to sustain life, is dripped in. This arrangement can sustain life indefinitely. There is nothing like the original equipment, though, and the tube placement can get infected and/or the patient can suffer pneumonia from the feedings backing up and going into the lungs (i.e., aspiration pneumonia).
These feeding tubes often get placed during an acute illness from which there is legitimate reason to think recovery is possible. The idea would be that the tube could be eventually discontinued and normal eating resumed. Grace was a 83 year old female who had a moderate degree of dementia when she suffered a stroke that left her unable to swallow. In the reasonable hope that she would recover from the stroke, a feeding tube was placed to support her until she was able to eat on her own. Alas, the patient never recovered and her mental status worsened. Cognitively oblivious, she was soon unable to do anything, including swallowing, so the tube feeding was her only source of nutrition.
Again the question of the quality of life arose, and again family members had differing views on withdrawal of nutritional support. Also, for many caretakers, stopping tube feeding seems to be a more active intervention, and therefore more intimidating, than simply stopping oral feeding. After much discussion, and consultation with a religious figure close to the family, the decision to discontinue tube feeding was made. Grace lasted an unusually long time–three and a half weeks, every second of which was agonizing for the family. Like most families, though, they were grateful when Grace’s suffering ended.
A couple of things to comment on:
One: The use of a feeding tube may allow short term feeding when swallowing is prohibited by an event such as a stroke, but there is not evidence that, used for long term feeding in dementia, it prolongs life, improves quality of life or even prevents pneumonia, because pneumonia can occur from aspiration of oral saliva into the lungs even if a feeding tube is being used an a patient is not being fed. And tube feedings in terminal cancer patients who reach the point of being unable to eat have been convincingly shown to decrease quality of life.
Two: Circling back to decision making at the end of life, this case points to the need for us to think of decision-making NEAR the end of life. The reality of hospitalizations for individuals with moderately advanced dementia is that outcomes of hospitalization are generally much like Grace’s: improvement and recovery is hoped for but the reality is often further decline and loss of function and quality of life. Time and again as a geriatrician, I have seen individuals hospitalized and re-hospitalized for episodes like pneumonia, to return to home or nursing home care for arduous and incomplete attempts at recovery before ultimately passing. I’ve told my family that if I suffer from significant dementia or another significantly debilitating condition, if an intercurrent illness takes place I don’t want aggressive care because it will likely at best lead to a partial recovery and further slide down the ladder to my demise. Hospice is an answer at that point in one’s life as an alternative to hospitalization. But unless family and caregivers are informed of this choice and understand and support it, our system will inevitably hospitalize and treat that intercurrent illness.
I am reading for the first time. Thank you so much for sharing your insights.
Janet