Reprinted from Eating Disorders Review
November/December 2001 Volume 12, Number 6
©2001 Gürze Books
As a clinician, I often try to imagine myself in the client’s shoes. Envisioning myself on the receiving end of treatment helps me better understand the client’s experience and, in turn, helps improve the way I practice. Over the years I have wondered what it must be like for patients receiving nasogastric tube feeding (NGTF). Most are terrified to gain the slightest amount of weight, and what thoughts and feelings must this treatment intervention evoke for them?
Until recently, the eating disorders treatment community could not confidently answer this question. As mentioned in Nutrition Notes in the September-October 2001 issue of EDR, few published studies have investigated the psychological impact of NGTF.
However, last May, Dr. M. Neiderman and his colleagues reported the results of their qualitative study of patients’ and parents’ reactions to NGTF. Using semistructured self-report questionnaires, the researchers asked 21 former patients and 37 parents about their experiences with NGTF. All the patients, who were 8 to 15 years of age at the time of treatment, and 9 to 31 years of age at the time of the study, had received NGTF at either Great Ormond Street Hospital for Children or Huntercombe Manor, in the United Kingdom. Both facilities specialize in the treatment of child- and adolescent-onset eating disorders. By assessing the range and depth of views held by patients and their parents, Dr. Neiderman and his co-workers hoped to enhance their clinical practice.
Consent to Proceed with NGTF
The questionnaires revealed that only 29% of the former patients had consented to the placement of the nasogastric tube. Most refused the tube because they feared weight gain and/or a loss of control over their nutritional intake. Those who consented to NGTF did so mainly for the following reasons: (1) to get better; (2) to have control for eating taken away from them, and (3) due to fears of being detained under a legal order.
The high incidence of patients refusing consent may explain why 63% reported physically resisting the passage of the nasogastric tube and subsequent refeeding. Almost all these patients had to be restrained by the nursing staff. The others stated that they had been sedated so the tube could be passed more easily. Once in place, 55% of the patients reported removing the tube on their own. All but three removed the tube five or more times. One patient stated that she had turned off her electric pump and tied knots in the lower end of the tube. It would be interesting to know whether giving consent, or not, had an impact upon the patient’s overall experience with NGTF.
Although two parents could not recall being asked, all the other parents had given consent for their child to receive NGTF. The parents identified four primary reasons for giving consent: (1) 44% were trying to prevent their child from dying through starvation and/or dehydration; (2) 25% recognized there was no other way to feed their child; (3) 19% were trying to aid their child’s recovery, and (4) 12% were accepting the medical advice offered by their child’s clinician.
The NGTF Experience
Even several years after the event, the experience of receiving NGTF evoked strong reactions for both patients and their parents. While 66% of the patients regretted the treatment intervention at the time, in retrospect, they thought it was necessary. Some of the patients expressed gratitude toward their care providers and identified NGTF as the first step forward in their treatment. The reaction of the remaining 34% of the patients is best summarized by the statement: “I hated it then and I hate it now.” Most of these patients identified the intervention as unhelpful and felt that it was intrusive, unpleasant, and an unforgettable experience.
The parents’ responses were similar to those of the patients, although they had to be viewed from a perspective that reflected the increased responsibility of making the final decisions for their children. Seventy-three percent of the parents reported NGTF was a regrettable necessity. They recognized it as a last resort that was required to keep their child alive. In contrast, the other 27% of parents described a more negative experience, and many cited uncaring clinicians.
However, at the same time, 67% of patients and 84% of parents could not identify a suitable alternative to NGTF. The suggestions that were offered by patients included oral feeding, liquid supplements, medication, or patients should be allowed to starve themselves. Three parents and one patient suggested a gastrostomy or jejunostomy. Other ideas offered by parents were: providing better food, allowing more time, introducing small amounts of food combined with a gentle approach and/or bribery, and allowing starvation to continue unimpeded.
Advice Offered to Others
Patients and parents were asked about the advice they would offer to others in the same position. The most common advice provided by patients was to encourage others to eat and not to get into such an extreme situation in the first place. Once NGTF had begun, most of the patients advised others not to resist, if only to avoid an even more unpleasant experience.
The parents advised other parents to ask any and all questions, become educated about the procedure, including any possible risks and alternatives, to answer any questions asked by their children, and to offer their child reassurance. The advice regarding parental involvement in treatment was mixed. Two parents in the study reported holding their child during the placement of the nasogastric tube. One parent stated that this was a positive experience and recommended active involvement in care; the other parent reported having a horrific experience and felt parental involvement was detrimental to the child’s treatment.
The researchers did not find an obvious relationship between a patient’s reaction to the experience of receiving NGTF and the eventual outcome. Despite the fact that most patients were highly resistant to the treatment intervention at the time, 50% of the patients had achieved good health and 42% had achieved an intermediate state of health at the time of the study. The outcome scores were based on Morgan-Russell categories and calculated for each individual using the mean of patient/parent responses after demographic and basic health-related information was collated.
Guidelines for Good Practice
The study was a valuable learning experience for the researchers. Both patients and their parents offered useful and practical suggestions about the process of NGTF. Thus, Neiderman and his colleagues recommend the following measures to guide and further enhance existing clinical practice standards:
- Develop clearly written guidelines regarding the consideration and use of NGTF.
- Provide an information sheet that contains details about the procedure, including risks, criteria for ending feeds, expected outcome, suggested reading, and a point of contact available to act as a liaison between the family and clinical staff.
- Where practical, ask patients who they would like to be involved and ask the parents what level of involvement they would like to have. Discuss the advantages and disadvantages of their decisions.
- Share with the patients and their parents the views of others who have undergone the process. Provide names of parents/patients willing to act as a point of contact if possible.
- Continually reassess the situation.
- Encourage the patient to take part in the decision-making, insofar as practical. Try to engender in the patient a sense of empowerment and control by helping her recognize that, although she may not have a choice in this instance, she still has other choices (e.g., where the procedure takes place).
- Educate all staff in detail about the issues surrounding nasogastric feeding.
- If a nasogastric tube is inserted or used at a site away from the specialist eating disorders unit, consider sending a specialist liaison clinician to the place where the procedure is being done, to offer advice and support.
- Always be available to answer questions and to discuss the procedures involved.
Neiderman M, Farley A, Richardson J, and Lask B. Nasogastric feeding in children and adolescents with eating disorders: Towards good practice.(Int J Eat Disord 2001; 29: 441).
— Linda M. Watts, MA, RD