AMA Journal of Ethics^®

Case

Mrs. McGoldrick was admitted to the local hospital from a local nursing home with a urinary tract infection (UTI) and multiple chronic diseases including diabetes and a history of heart attacks. Mrs. McGoldrick is 81 years old, has an adult daughter and an elderly sister. During the admission process, Mrs. McGoldrick reported that she could walk only with pain and therefore spent most of her day sitting in a chair. She was evaluated by a psychiatrist immediately after admittance and was prescribed antidepressants to combat symptoms of clinical depression. She was also observed to have indications of early stage dementia.

After spending 3 days in the hospital, Mrs. McGoldrick appeared to have been successfully treated for the UTI but remained weak and lethargic. In an effort to elevate her mood, the anti-depressant dosage was increased, but after several days there were no marked signs of improvement. One of the most distressing trends noted by the clinical staff was Mrs. McGoldrick's intake of foods and liquids. Several tests revealed that she was suffering from hypoprotein anemia which suggested that the she had not been properly nourished for a sustained period of time. The hospital staff, however, observed Mrs. McGoldrick eating and drinking well when her sister fed her during one of her regular visits.

Prior to Mrs. Goldrick's release from the hospital, her primary care physician, Dr. Misenti, spoke privately with Mrs. McGoldricks's daughter, who stated that her mother had expressed a "wish to die," believing that there was nothing more that she wanted from this life. After considering this information, Dr. Misenti suggested continuing the anti-depressants and giving Mrs. Goldrick the option of a percutaneous endoscopic gastrostomy (PEG), which might help raise her mood and nutritional status and, hence, her quality of life. It was Dr. Misenti's hope that by improving the quality of Mrs. McGoldrick's life, he would also encourage her to want to live. Her daughter believed that this was an idea that should be explored and implemented, but Mrs. McGoldrick refused to consider the option.

Commentary 1

Mrs. McGoldrick was admitted to hospital with an acute and totally reversible illness—a urinary tract infection. Once treated, she'll presumably be about as well as she was before admission. (This is in contrast to an illness like stroke, fracture or major myocardial infarction where the patient would probably not return to her previous health state.) Her baseline functioning seems limited by chronic ambulation-related pain, and there is no evidence of recent deterioration.

During this admission, Mrs. McGoldrick comes under the scrutiny of the acute medicine team, with its bias towards intervention. Had she not become infected, none of the questions now on the table would have arisen. The team notices depression, perhaps early dementia, poor food and liquid intake, and some abnormal "markers of nutritional status." The record shows that she is not dysphagic, however, and with her sister present her oral intake is adequate and otherwise problem-free.

Mrs. McGoldrick's daughter reports that her mother has expressed a wish to die. This statement of course requires that the patient be carefully evaluated for suicidal ideations. Often, however, this "wish" is presented as a fairly nonspecific expression of suffering, rather than an actual desire. In LaFontaine's Death and the Woodcutter, an elderly man is enveloped by hardships: hunger, exhaustion, wife, kids, debt, servitude, taxes, and soldiers. He calls on Death to come and release him. But when Death arrives and asks what he wants, he says he just needs some help moving this bundle of branches. LaFontaine concludes, "Plutot souffrir que mourir, C'est la devise humaine."¹

PEG feeding is then suggested by the patient's primary care physician, who gives 3 reasons for his recommendations. The first is that Mrs. McGoldrick's mood will improve with PEG feeding. Second, her nutritional status will be raised, "and, hence, her quality of life." Third, with improved quality of life, the patient may be encouraged to want to live. The first issue, her mood, is discussed in an accompanying piece (see commentary by Muriel Gillick). Understanding and treating depression in dementia are very complex matters. In any case, a sick patient who's received 3 days of antidepressant medication has not been treated effectively for depressive symptoms.

What about her nutritional status and quality of life? First of all, there is a profound misunderstanding about malnutrition, and there is a vigorous promotional campaign designed to sell nutritional supplements. A human being needs calories for 3 main purposes: basal metabolism, activity, and the thermal expenditure of feeding—the energy required to digest and absorb nutrients. Basal metabolic rate depends in large part on muscle mass. If a patient is thin, slightly wasted, and sedentary, as Mrs. McGoldrick is, her muscle mass will be low. Confined to bed and chair, Mrs. McGoldrick's activity level is also low; she eats little; and will need only minimal energy to digest and absorb her food. In the days before PEGs, many very skinny, bedfast patients survived for years with an astonishingly small caloric intake. Lawyers and vendors of nutrition products would have us believe that such a situation is untenable.

We all want our patients to be properly nourished, but what does this mean? Although studies of feeding tubes in those with mild dementia are not available, other data show that thin patients with advanced dementia who are eating little do not live longer with PEG feeding. For a physician to tell a family member of such patients, "Well, we can either put in a feeding tube or let your mother starve to death" is both dishonest and coercive. A truer sentence is, "Your mother is not doing well despite our best efforts. We can put in a feeding tube, but no real evidence suggests it will help her live longer, and the best evidence shows a high chance that she would die in the near future." Similarly, no evidence whatsoever suggests that risk of infection is reduced by PEG feeding and "proper" nutrition. To the contrary, tube feeding is cited as a risk factor for pneumonia and has been shown to cause life-threatening infections of the lung, pleura, gut, peritoneum, abdominal wall, bloodstream, and more. Children with poor access to food live longer and have fewer infections when they are provided with food; adults with advanced dementia who eat little even when it is offered do not live longer, have no fewer infections, and may well have more, once PEG feeding is begun.

What do the data show about quality of life with PEG tube feeding? Most of the data concern more severely demented patients, and they are usually unable to report their inner experience. Patients who undergo PEG feeding are more likely to be restrained, which seems to contradict the suggestion that quality of life is better. But most importantly for this case, PEG feeding might reduce mealtimes with the sister—who is one of the patient's only sources of socialization—and this would be a real loss to both women. PEG might improve the quality of life for patients with severe dysphagia who cannot keep food and fluid out of the airway and who react vigorously with coughing and gagging. In general, eating is one of life's great pleasures. PEG feeding is not eating.

Finally, what is the relationship between quality of life and the desire to stay alive? LaFontaine's story refers to an important drive: the widespread and deeply held desire not to be dead. In the large, sophisticated SUPPORT initiative, quality of life had no effect on patients' desire for resuscitation.² Of surveyed patients with C4 quadriplegia, stable for at least 1 year, with clear cognition, 90 percent are glad to be alive.³ This desire not to be dead is often underestimated by physicians and family members.

In conclusion, there is no physiologic basis for placing a feeding tube in this patient. She has been stable in the nursing home and should recover completely from her acute illness. She is able to protect her airway and when her sister is present, Mrs. McGoldrick's intake is adequate. Tube feeding will not solve any of the problems for which it is proposed; imprecise references to "proper nutrition" should be clarified explicitly.

Beyond the uncertain and, frankly, unlikely medical benefit, an even stronger reason not to place a feeding tube exists. In many ethical decisions near the end of life, tension develops between 2 fundamental values. On one hand is reverence for life. The value of human life is the North Star by which ethical decision making should steer. On the other hand is the basic human right to say, "Keep your hands off of me," which our patient has already expressed. Unless we are willing to counter that she is incapable of realizing the consequences of this decision, and to deprive her of her basic right to control her own body, placing a PEG would be assault. This would be true even if PEG feeding were life-sustaining, which it is not. To undertake this intrusion based on someone else's assessment of her quality of life is simply untenable.

My approach to this patient would be to discontinue all medications that might interfere with appetite or attentiveness, including cholinesterase inhibitors, bisphosphonates, nonsteroidal anti-inflammatories, sedatives, narcotics, and many others. She should be formally evaluated for major depression. If this diagnosis is established, she should be properly treated. Meals and mealtimes should be attractive, pleasant experiences with the nursing home staff and family spending meaningful time helping Mrs. McGoldrick to take nourishment. Truly caring for the patient is at the heart of good care for so vulnerable and frail a person.