吃还是不吃：影响家庭肠外营养和家庭肠内营养用户的饮食问题述评
编者按：“To Be, or Not to Be”（生存还是毁灭）是莎士比亚《哈姆雷特》（王子复仇记）第三幕第一场，哈姆雷特王子一段台词的第一句，整句的全文是：“To Be or Not to Be, that is the question”（生存还是毁灭，这是一个值得考虑的问题）。它是世界文学中常被引用的一句。本文效仿《哈姆雷特》的五幕列举了五个病例：
例1: “I Want to Eat So Bad I Could Almost Cry”
例2: “I Want to Eat Cake, but I Don't Want My Belly to Hurt”
例3: “I'm Going to Put Some Food on My Plate and Move It Around”
例4: “To Tell or Not to Tell”
例5: “I Hope There Is Not a Line for the Restroom”
Nutr Clin Pract. 2016 Apr;31(2):155-7.
To Eat or Not to Eat: A Commentary on Eating Issues That Affect Home Parenteral Nutrition and Home Enteral Nutrition Consumers.
Tillman EM, Ireton-Jones C.
Departments of Clinical Pharmacy and Pediatrics, The University of Tennessee Health Science Center, Le Bonheur Children's Hospital, and Children's Foundation Research Institute, Memphis, Tennessee, USA; Nutrition Therapy Specialist, Carrollton, Texas, USA.
As a clinician, have you ever recommended that one of your patients/consumers follow a prescribed diet (liquid, low residue, low fat, low sugar, etc)? Have you ever had patients/consumers who were noncompliant with their recommended diets? Most clinicians would answer "yes." It is difficult for patients to remain compliant with highly restrictive diets. Home parenteral nutrition (HPN) and home enteral nutrition consumers are often prescribed a particular diet due to the disease process or anatomy that resulted in the need for home parenteral or enteral nutrition (HPEN). Because of this, food choices may be limited due to specific dietary requirements. Compliance can be a challenge with HPEN consumers, who are often willing to "suffer the consequences" to be "normal."
When a patient has special dietary requirements or needs, suddenly it seems that life is centered on food. From a casual dinner with family, a backyard barbeque, a birthday party, a business luncheon, coffee with a friend, or a first date, these situations may evoke anxiety for HPEN consumers. Food is not always enjoyable, as eating can lead to pain, discomfort, and/or an urgent need to visit the restroom. Yet, avoiding eating can spark numerous questions that the consumer may not want to discuss.
Some of the factors that may influence dietary compliance include hunger vs cravings, eating at home vs away from home, and social or peer pressure to eat. Quality of life while receiving HPEN is often an overlooked component of therapy and management; Winkler et al conducted interviews with 24 adults with short bowel syndrome on issues affecting their quality of life.1 This study found that quality of life was affected by health, stamina, diarrhea, having an ostomy, and infusion schedule, but in all interviewees, there was a strong desire to achieve "normalcy" in life...
PMID: 26888856
DOI: 10.1177/0884533616629637
