[Article by Edward B. Yellig, MD,
Hospice Medical Director of Hospice of Wake County; 
published in the Wake County Medical Society Newsletter
Fall (4th Quarter), 2003  Volume 8  No. 4]

"Withholding and Withdrawing Life-sustaining Therapies, Part Two
Artificial Nutrition and Hydration"

     One of the most challenging and difficult decisions that physicians are asked to make is whether or not to provide intravenous fluids and/or tube feedings to terminally ill patients.  Food and water obviously, when used appropriately, can forestall death.  Of all of the life sustaining medical procedures that are available to us, including intubation and mechanical ventilation, transfusions, dialysis, antibiotics, and cardiopulmonary resuscitation, the provision of food and water seems almost obligatory.  More than a third of physicians and surgeons agreed with this stance according to one study.  No one seems to want to see a fellow human "starve to death."  Although there are clear indications for the use of artificial nutrition and hydration (ANH) in patients with certain disease states such as ALS, cancer in situations where oral feeding is impossible, and stroke limited to swallowing disorders, using the same in terminal states and in particular terminal dementia is no longer deemed beneficial.  The following case illustrates how both physician and family attitudes and beliefs, however well-meaning, can lead to decisions that prolong suffering at the end of life.

     Mr. TF was a 76 year old widowed African American man who had a prolonged and gradual deterioration of function due to multiple CVA's and MI's.  In 1968, the patient had his first stroke which left him with right-sided hemiparesis and unable to work.  He had hypertension and developed diabetes mellitus, thus setting the stage for several more CVA's.  In the year prior to referral to Hospice of Wake County, he was hospitalized multiple times with aspiration pneumonia or sepsis from UTI's.  The multiple strokes caused dementia which impaired his ability to communicate.  He had never provided an advanced directive to guide his family in his care-taking during his last year of life.  Because of his inability to swallow safely, confirmed by a swallowing test, a PEG tube was placed during his last hospitalization at the request of his physician.  He was then sent home to be cared for by his children, one of whom had to quit his job to become his primary care-giver.  Soon thereafter he was admitted to Hospice of Wake County.

     At the time of the physician's recommendation to place a feeding tube, the children were told that their father would die if the procedure was not performed.  As they described this event to me, the son revealed that it felt to them that this was the doctor's decision and that they had no say in the matter.  They were ambivalent about the decision, knowing that he already had a poor quality of life which the tube feedings would only prolong.  Nevertheless, because the physician was ordering the procedure, they felt compelled to sign the consent document.

     In the following months Mr. A continued to decline and required intense home care to keep him comfortable and minimize the complications of being bed bound with 24 hour tube feedings and a Foley.  He developed multiple decubitae which were treated vigorously and successfully when they appeared.  He eventually became unresponsive to both verbal and tactile stimuli.  I held periodic conversations with the son encouraging him to discuss the burdens as well as the benefits of the feedings with his family.  These conversations inevitably triggered such comments as, "We can't stop the feedings now because that would be like killing him."  The children were educated about the natural history of the disease and that, when allowed to run its natural course, the disease would actually be the cause of the death.  He would then be spared of enduring his current poor quality of life.  These discussions were lengthy, and understandably difficult and emotional for the family because of the nature and consequences of withdrawing nutritional support.  The children eventually agreed to not intervene should another life-threatening illness develop such as pneumonia.

     After he had been with Hospice for a year, he required a trip to the emergency room to replace his Foley.  He was found to have bacteriuria, always present in patients with a Foley, and was placed on an antibiotic.  This resulted in antibiotic-associated diarrhea which lead to catastrophic perineal skin breakdown, deep decubitae, and rapidly developing deep tissue infection.  The children discontinued his tube feedings and he died the following day.

     Many reasons cause physicians and families to consider ANH through tube feedings in terminally ill patients.  They include the prolongation of life, the reduction of suffering, the prevention or healing of bedsores, the prevention of aspiration pheumonia, the improvement of function, and religious and personal values that demand that food and water never be withheld.  Two recent review articles that examine these issues in detail will be summarized here.
     
Does tube feeding prolong life?  In demented patients, the inability to eat is a marker for the terminal phase of the disease.  Studies comparing careful hand feeding with tube feeding found that there was no difference in survival rates.  One review quoted substantial morbidity and increased mortality related both to the procedure and to longer term complications such as perforation of the stomach, infection, and chronic diarrhea.

Does tube feeding prevent suffering?  The answer is clearly no:  more often the tubes can crease suffering because placement requires a surgical procedure with potentially attendant complications, some patients have to be restrained to prevent pulling out the tube, and patients with tubes do not get the pleasure of tasting food or have the comfort and intimacy provided by someone carefully feeding them by mouth.  Lastly, hydration of patients increases the risk of CHF, edema, and excessive oral secretion.

Do tube feeding prevent or heal bedsores?  The studies reviewed in the articles below found no published data that associated nutritional status or tube feeding with the healing of bedsores or protection from developing new ones.

Does tube feeding prevent aspiration pneumonia?  Gastrostomy tube feeding can reduce the lower esophageal sphincter tone and increase the CE reflux.  Other studies have found an increased risk of aspiration pneumonia among tube fed patients. Studies with jejunostomy tubes have had mixed results.

Does tube feeding improve well-being or functional status?  No studies have shown to improve the well-being or functional status in patients with advanced dementia.  More data has revealed a reduced quality of life primarily because of the need for restraints in as many as 70 per cent of patients and because of the less frequent intimate contact with other humans.  In those patients who do have a longer survival, the question of whether or not suffering is also prolonged must be answered.
  
Is it morally or ethically wrong to withhold or withdraw artificial hydration or nutrition?  Legally, artificial nutrition and hydration are considered medical treatments or therapy, and, as such, can be refused or withdrawn by patients of their surrogate decision-makers.  Additionally, the withholding and withdrawing of these treatments are considered equal, i.e., neither has more or less moral or ethical weight than the other.  However, for all persons involved, it is more emotionally difficult to stop ANH than to start it in the first place as seen in the case presented.  Lastly, all major religions have come out with statements that establish support for interventions that favor life but only if the benefits outweigh the problems and not create "impediments to dying."

For many physicians, this may be new information.  However, even armed with these facts arguing against the placement of feeding tubes or starting IV's, physicians may still be faced with strong beliefs and feelings of their own as well as in their patients' families regarding these interventions.  Ideally, the patient's wishes will have been recorded in an advance directive or communicated to a loved one, but too often, this is not the case.  Physicians are thus urged to develop the essential end of life communication skills to assist in determining treatment preferences.  These skills are outlined in the EPEC Program, Module 11 as discussed in my previous article "Withholding and Withdrawing Life-sustaining Therapies, Part One", in WCP, Volume 8, No. 2.

     It is most important to begin with establishing a common understanding through the technique of "ask-tell-ask":  ask what the patient and family understand about the current circumstances; tell them your findings and impressions in a language they can understand; then ask them to repeat to you what they heard you say.  It is then more fruitful for you to begin a discussion of the general goals of care which will lead to specific treatment preferences.  As a last resort, be prepared to consider or recommend time-limited trials of IV fluids or nasogastric tube feedings, even if you know these interventions may not be helpful.  In this way, you, the patient, and the family can see first hand the burdens as well as the benefits of the intervention.  You, of course, do not have to do anything that you know will be harmful to the patients.  You also are not required to perform interventions that you are morally opposed to, in which case you much seek to refer the patient and family to another physician who would accept them.

     Lastly, be supportive and understanding of the strong emotions that may be expressed during his time about these importand decisions.  Even though patients and families may not make the decisions that are recommended, physicians must remain a caring presence.  It is a time which will demand that you dip deeply into your well of tolerance and compassion in order to provide your patient with the best of end of life care.

1. Solomon MZ, O'Donnell L, Jennings B, et al. "Decisions near the end of life: Professional views on life-sustaining treatments"  Am J Public Health 1993; 83: 14-23.
2. Finucane TE, Christmas C. Travis K, "Tube feeding in patients with advanced dementia"; JAMA, 1999, 282: 1365-1370
3. Gillick MR, "Rethinking the role of tube feeding in patients with advance dementia"; NEJM, 2000, 342: 206-209