The case of Mrs. P, a patient in the advanced stages of dementia with eating problems who is losing weight, is typical for patients suffering from dementia.3,21
In what follows, the decision-making and care for Mrs. P are described.
Upon recognition of her eating difficulty, a physician completes a medical evaluation of Mrs. P in consultation with a registered nurse, dietitian, speech pathologist, and dentist, if indicated. Evaluation includes a careful history, obtained from staff and family if necessary; physical examination; swallowing observation; and medication review. Medical evaluation excludes etiologies other than dementia22
and focuses on therapeutic interventions that may alleviate Mrs. P's swallowing difficulties. Specific interventions include altering the texture, cohesiveness, viscosity, temperature, and density of Mrs. P's food;23
changing her posture while eating;24,25
denture adjustment or addressing other dental concerns; and medication adjustment.
Some patients respond to these interventions with improved oral intake and weight stabilization. Regardless of whether the patient responds favorably, ongoing education and counseling with the family is essential. The physician should speak to the family about the inevitable course of end-stage dementia to facilitate discussion of advance care planning.27,28
As part of the advance care planning discussion, healthcare providers educate the proxy about the burdens and benefits of feeding tubes, ascertain whether the nursing home resident has preferences for the use of artificial hydration and nutrition, make recommendations, and arrive at a care plan.
In the case of Mrs. P, interventions fail to improve her oral intake. Therefore, it is time to review her previously stated wishes regarding tube feeding, if any, and to discuss the benefits and burdens of tube feeding with the appropriate surrogate decision-maker. In current practice, after this discussion, surrogate decision-makers are often provided with the option to use or refuse artificial nutrition or hydration. This presents a problematic and misleading dichotomy between “feed” or “don't feed.” It is easy to see how a surrogate may agree with the physician that tube feedings do not sound consistent with the resident's wishes, but faced with a “care” or “no care” decision, he or she is unable to choose the “no care” option. As illustrated by the example discussion below, CFO functions to clarify the second option so that patients and proxies can decide between feeding through artificial nutrition or hydration and oral feeding to provide nutrition with a focus on minimizing patient distress.
CFO is envisioned as functioning foremost as a care order, detailing the care received during oral feedings and documenting the decision not to use a feeding tube, although in also emphasizing the broader comfort-oriented goals of feeding than with artificial nutrition or hydration, CFO allows for greater patient or surrogate empowerment in advance care planning. An example of the advance care planning discussion regarding CFO with Mr. P, Mrs. P's husband, follows. Ideally, this discussion should take place in the context of a previously established physician-surrogate relationship, in which the patient's condition and prognosis have been addressed before discussion of CFO occurs.
Physician: Mr. P, I know this might be difficult for you, but I'm sure you've noticed that your wife has been having increasing difficulties eating, and I feel it's important that we discuss what we might expect for her over the next several months. Over the past weeks, the nursing staff has noted she has been choking on the food despite modifications of the textures. This is causing her distress.
Mr. P: Yeah, I noticed she's been having a harder time when I've tried to feed her as well. Do you think she'll get better?
Physician: As we've discussed, dementia is a progressive illness that results in death. This means that we do not expect her condition to improve, and her condition will inevitably worsen over time.
Mr. P: How much time do we have left?
Physician: Well it's difficult to say exactly. I can't tell you when she will pass away, but it is something you should prepare for. Her bout with aspiration pneumonia last month and her recent difficulty swallowing, unfortunately, are not good signs. Over the next few months, we can expect that her eating difficulties will persist and may progress to the point that she is unable to safely swallow food or fluids.
Mr. P: So, we'll have to put her on a feeding tube?
Physician: That is an option. However, the best available evidence we have suggests that for patients such as your wife, a feeding tube would not prolong her life, reduce her chances of getting pneumonia again, or even prevent her from being malnourished. Feeding tubes also have potential adverse effects. The tube may cause her agitation, requiring us to restrain her, and malfunction of the feeding tube could require her to be transported to the emergency room. She might also experience nausea, vomiting, or reflux, and it is possible that a serious infection or severe diarrhea may require her to be hospitalized.
Mr. P: That doesn't sound like the way she would want to live, but what else can we do?
Physician: Another option is to focus on keeping your wife comfortable through feeding her by hand instead of through a tube. We call this order Comfort Feeding Only. The goal of this order is to focus on your wife's comfort and provide feeding to her as long as she is not showing signs of distress such as choking or coughing. If oral feeding is causing her distress, the person feeding her will stop the feeding. Over time her ability to eat orally will likely decline further. This is the natural progression as someone approaches the end of life. However, it is important for you to understand that this order of Comfort Feeding Only places a premium on her comfort during meals but is unlikely to keep her from losing weight.
Mr. P: It sounds like that might be best, all considering. If it was me, I would just want to be comfortable.
Physician: What do you think your wife would decide for herself if she could?
Mr. P: She always told me not to let her linger or suffer when her time came, to just let her go.
Physician: I understand. Based on what you told me, I recommend that she be made Comfort Feeding Only.
Mr. P: Yeah, it's what she would have wanted.
Given the advance care planning discussion with Mr. P, CFO care would be initiated in the case of Mrs. P. According to an individualized care plan, she should be fed regularly, with cessation of oral feeding when she begins to show signs of distress (e.g., choking, coughing). Her individualized care plan should document unique signs of distress, which behaviors indicate it is safe to feed, what types of foods are preferable, effective feeding techniques, and at what times of day feeding is preferable. When Mrs. P no longer tolerates oral feedings, the nursing home staff provides an alternative means of positive human interaction, in lieu of feeding, for the remainder of the meal period. Interaction may involve speaking to her and therapeutic touch, which carry a range of benefits in dementia patients.29,30