So, you might imagine that it caught my attention when I ran across an article titled, “Informed Decision-Making Surrounding the Use of Chronic Enteral Nutrition: Let’s Talk the Talk” (Southern Medical Journal, Volume 103, Number 2, February 2010; pp. 109-110). There is hardly a medical decision more laden with emotion than the decision to insert a feeding tube; and recent cases examined in the courts and in the court of public opinion have highlighted that.
The article by Joseph W. Shega, MD, is actually an editorial comment. It is commenting on another article in the same edition of the Southern Medical Journal, “Effect of Physician Education and Patient Counseling on Inpatient Nonsurgical Percutaneous Feeding Tube Placement Rate, Indications, and Outcome” (Southern Medical Journal, Volume 103, Number 2, February 2010; pp. 126-130) by Arun Swaminath, MD, et al. This is an interesting research study. The study, carried out in a hospital that is part of a major health maintenance organization (what Swaminath et al describe as a “pre-paid group practice), looked at the results of educational interventions on the number of percutaneous feeding tubes (PFT’s) before and after the introduction of a program of education both for professionals and, as referred, for families and surrogate decision makers. (Most professionals would be familiar with PFT’s as PEG or PEJ tubes [percutaneous endoscopic gastrostomy or percutaneous endoscopic jejunostomy, respectively].) In 2005 a geriatrician in the practice began to offer “a comprehensive program of education for physicians and counseling for patients and their families on chronic enteral tube feeding.”
She provided a one-hour educational seminar to the hospitalists, neurologists, speech therapists, nutritionists, social workers, and gastroenterologists in separate department meetings attended by the majority of practitioners. The seminar included information about the pros and cons of long-term tube feeding and included illustrative case summaries. She gave the attendees copies of 2 pamphlets: “Should My Loved One Have A Feeding Tube?” and “Fast Facts About Artificial Nutrition” from the Education and End of Life Palliative Care Curriculum. (Citations for these brochures are included in the published article.)
In addition, where referred by physicians the geriatrician would provide consultations with families.
Each consultation included an assessment of the patient’s prior functional status and patient’s social support network and how the patient’s life had changed over the past few years. Matters such as living arrangement, spiritual heritage, and prior known wishes were always discussed in detail. The geriatrician explored the value system of the patient and family, family dynamics, medical indications for PFT placement and the prognosis. She provided value-neutral information regarding the options for care, focusing on specific goals. Specifically, she discussed the experience of hunger and thirst at end of life, the usual attribution of death in terminally ill patients to disease rather than malnutrition, and complications after PFT placement, including aspiration pneumonia. If an advance directive denoted a durable power of attorney for health care decisions, that person was included in the discussion along with other family members, friends, and spiritual advisors who were relevant to the patient’s care. She gave the patients and/or decision-making surrogates the same 2 educational pamphlets that she had given the practitioners. When advanced directions were lacking and surrogates were involved, the emphasis was on determining what the patient would want.
In 2004, before the education intervention began, 115 PFT’s were placed by gastroenterologists (GI doctors) or by interventional radiologists (IR doctors) for patients included in the study group. In 2005, the year the intervention was practiced, 60 were placed in patients meeting the same inclusion and exclusion criteria. Swaminath et al note that “PEG placement is the most common procedure in many practice settings, and over 200,000 PEGs are placed annually in the United States. Assuming an average cost of $2200 per PEG, the yearly cost for PEG in the United States approximates $440 million (excluding costs of treating complications).” Certainly, a reduction by almost half would certainly mark a significant change.
This is an interesting study, worth reading on its face. It has certain limitations that the authors readily acknowledge themselves, but not so serious as to discredit its conclusions. However, together with Shega’s commentary, it highlights significant ethical issues. Most important are comments in both articles on what we actually know about the benefits associated with PFT’s for many patients who receive them – or that aren’t associated. Swaminath et al note, “Studies of long-term tube feeding of patients with dementia have many design flaws and there are no randomized trials. Available data reveal no clear nutritional benefit or reduction in morbidity and mortality, yet many primary care physicians have concepts that differ from research findings about the value of tube feeding in advanced dementia.” Shega echoes this, noting that, “the cited benefits of use; prolonging life, preventing aspiration, healing pressure ulcers, and providing comfort, do not appear to be supported by available evidence.” I would note, too, that in supporting their comments, authors of each article cite different sources. This suggests more validity to the observations.
Both articles, and Shega’s comment especially, point out the important ethical issues involved. Certainly, if the benefits attributed to PFT placement are not actual, there are significant issues both of placing patients at inappropriate risk, and of wasted use of resources.
Even more, I was struck by the approach of the geriatrician when she was referred to families. While she dealt with the issues related specifically to PFT placement, her topics in educating the families reflected those many of us have used in approaching advance care planning generally.
Issues of tube feeding have gotten particular attention in recent years. Indeed, Swaminath et al note specifically the attention to Terri Schiavo’s last years and death. Many families we might speak with will have particular images of “starvation,” and consequent emotional responses, even if that is not the actual circumstance of a patient who is dying of other known causes. In light of this, and especially if enteral tube feeding doesn’t provide the benefits attributed to it, this level of intervention and education would seem to be a benefit to patients and families alike. At least these articles and the questions they raise are worth considering.