The Contribution of Social Factors to Undereating in Older Adults with Cancer

Abstract

Inadequate nutrient intake is common in cancer patients and is associated with poor outcomes. Social factors may contribute to inadequate nutrient intake, although they have not been studied. The purpose of this study was to investigate social factors that may contribute to undereating in older adults with cancer. Participants included 30 patients, 17 women and 13 men, aged 70–99 years, who were diagnosed with pancreatic, colon, breast, lymphoma, skin, and head and neck cancers. Both participants and caregivers interpreted weight loss as a positive health outcome of cancer. Furthermore, some patients who had lost weight worked to keep the weight off by going on special diets. Patients and caregivers imbued certain foods with health-promoting qualities without corroborating scientific evidence. Cancer- and treatment-related alterations in self-identity due to changes in their bodies, in taste, and in the manner in which they must eat caused cancer patients to experience frustration and embarrassment, which led to reduced nutritional intake. Despite their compromised nutritional status, patients did not discuss food and eating habits with their physicians. Behaviors and attitudes of patients and caregivers may lead to negative changes in eating behaviors beyond the cancer itself or its treatment or sequelae. Many of these behaviors are potentially modifiable with appropriate education, communication, and intervention.

Introduction

Food and eating habits are especially important and problematic in people with cancer. Anorexia and/or cachexia affect 50% of patients experiencing any form of cancer at any stage.^1–5 The reasons for anorexia and cachexia in these patients are multifactorial; most explanations have focused on tumor- or treatment-related factors and depressive symptoms.^6–8 Social factors may also affect dietary intake in cancer patients, but they have not been studied.

Although food and eating activities occupy a central role in the social lives of all persons, older persons may be at greater risk for experiencing reduced dietary intake related to social factors than younger persons. This is an especially important concern, as cancer disproportionately affects older adults, with age being the most significant risk factor for cancer.⁹

Numerous researchers have found that older adults’ food beliefs and habits may change as a result of different social and family roles, the death of a spouse and other loved ones, changes in living arrangements, mobility and functional impairment, lowered income, comorbidity, poor oral health, medication usage, depression, and normal physiologic changes associated with aging.^10,11 Our own recent work using quantitative methods and dietary recalls has found that social factors—more than anything else—accounted for undereating in older adults who were homebound and who had recently experienced an acute illness or xacerbation of a chronic condition.¹² However, participants with a diagnosis of cancer were excluded from this study.

Although research has been conducted regarding the social and cultural significance of food and eating in those who are healthy (including older adults), little has been written about the dietary habits or importance of food and eating in those who are ill or experiencing cancer.^13,14 We are aware of only one recent article that has examined the dietary patterns and preferences of patients with advanced cancer, many of whom were older patients.¹⁵ The researchers used 3-day dietary records and found that participants did not consume enough calories to maintain weight; they also learned that lower intakes were associated with a decreased frequency of eating, little variation in food intake, and a high proportion of liquid intake. There is a dearth of research on food and eating in older adults with cancer. The purpose of the current qualitative study was to examine social factors that may contribute to undereating in older adults with cancer to generate hypotheses for future evaluation.

Materials and Methods

Qualitative methods consisting of in-depth, semistructured face-to-face interviews were conducted with community-dwelling older adults with cancer and their caregivers separately. The study used both a constructionist perspective and a grounded theory approach to conducting interviews.^16,17 This theoretically based methodologic approach has previously been used in studies examining food choice and behavior.¹⁸ Specifically, eating issues were examined from the unique perspective of study participants, including both patients and caregivers. Themes that emerged from the interviews are presented here to provide a more comprehensive understanding of the role that social factors may play in contributing to eating problems among this patient population. The study protocol was reviewed and approved by the University Institutional Review Board. Informed consent was obtained from all participants.

Participants

Participants were recruited from one of two University of Alabama at Birmingham outpatient clinics: Hematology/Oncology Clinic or Ear, Nose, and Throat. They were diagnosed with pancreatic, colon, breast, lymphoma, skin, and head and neck cancers. To be eligible for this study, participants had to be at least 70 years old, able to communicate orally or have a caregiver who was able to communicate, and able to consume food orally. Participants were recruited into the study until the point of theoretical saturation, that is, until no new themes emerged in the data with each additional interview.¹⁷

Interviews

All interviews were conducted at the time of a regularly scheduled patient appointment. Interviews were conducted separately for the patient and the caregiver, except in the case of an Asian patient (where the son caregiver had to translate). All interviews were conducted by either the first or second author.

Age, gender, ethnicity, and type of cancer were recorded for all patients. The relationship of the caregiver to the patient was also recorded. Both patients and caregivers were administered a semistructured interview, which included items related to various aspects of food and eating. Patients were asked a series of questions about the foods they ate, whether their eating habits had changed since their cancer diagnosis and treatment, and what specific factors accounted for any changes. Patients were also asked whether they lost weight and, if so, how much. Last, patients were asked a set of questions regarding their communication about food and eating habits with healthcare providers. For all questions, patients were probed further and encouraged to elaborate on their responses.

Caregivers were asked a series of open-ended questions specific to their roles related to food and eating with the patients, including meal preparation and consumption. They were also asked questions regarding how they managed changes with food and eating activities within the household because of the cancer diagnosis or treatment. To the extent that caregiver interviews contribute to patient interviews on this topic, they are included in the analyses.

Data Management and Analysis

All interviews were tape-recorded and transcribed verbatim. Interviewers used a constant comparative method throughout the study, wherein all interviews were reviewed and systematically coded for thematic and relational content by the principal investigator and the project coordinator (the first and second authors).^17,19 For each transcribed interview, a summary sheet consisting of themes that emerged from the interview was prepared. Next, the checklists were compared. There was 100% agreement between the principal investigator’s and project coordinator’s coding schemes and summary statements.

Results

Thirty participants were enrolled in the study. The mean age of participants was 79 years, with a range of 70–99 years. Seventeen women and 13 men were enrolled. There were 28 European Americans, 1 African American, and 1 Asian American. Twenty participants had caregivers.

Several predominant conceptual categories related to social factors associated with undereating emerged from the data and are described here.

Weight Loss Interpreted As a Positive Outcome

Many patients reported that they had experienced some degree of weight loss since their cancer diagnosis. Quite unexpectedly, however, was the finding that both participants and caregivers interpreted the weight loss as a positive health outcome of the cancer. One man diagnosed with pancreatic cancer lost 60 pounds; this loss represented 24% of his precancer diagnosis weight of 255 pounds. He summed up what several patients expressed:

Yes, I needed [to lose weight]. That is just good for my health....I am fine now. I mean I have been right at 195 so far [after having regained 10 pounds].

The perceived health benefits of patients’ weight loss were similarly echoed by caregivers. One female caregiver said of her mother:

She [her mother, the patient] was a real healthy big lady. And she needed to lose the weight anyway because she had gout and arthritis. And, so now she wants to stay right where she is at 197.

The patient was diagnosed with breast cancer that metastasized to her bones. Coincidentally, this patient also lost 60 pounds. She had initially weighed 279 pounds. At the time of the interview, she was so frail that she was unable to stand without assistance—yet she was happy about the weight loss.

Because a cancer diagnosis is a stressful event that requires individuals to engage in a process of cognitive appraisal, signs and symptoms are given meaning as irrelevant, threatening, or encouraging.^1,20 One way for patients to cope with their cancer diagnosis may be to interpret weight loss as contributing to their overall well-being. This is not an unreasonable interpretation, as there is a great emphasis in our society on the negative consequences associated with being overweight and the health benefits of losing weight.

Three patients reported that they were actively on diets to lose weight at the present time, and all had initiated their diets concurrently with their cancer treatment. One female caregiver reported that her husband was on the South Beach Diet. When asked whether her husband had lost any weight since his precancer diagnosis weight of 190, she said, “He lost about 10 pounds, but he was trying to lose some weight.”

A female patient who was diagnosed with head and neck cancer and whose precancer diagnosis weight was ~140 pounds was dismayed that she had not lost more weight:

In fact, I only lost about 10 pounds during that whole time [before treatment] and kept it off during the whole treatment....I didn’t want to gain the weight back. So, that is the reason I drink the Slim Fast at night.

One way for patients to maintain control over their lives when all else seems out of control is through diet. Claude Fischler theorized that food consumption is one of the primary ways in which individuals can exercise “control over the body, the mind, and therefore over identity....It is the first and probably the main means of intervening in the body, the favored instrument of control over the self.”²¹

One extreme example of this is illustrated by a male patient who was diagnosed with lymphoma, did not have diabetes or prediabetes, did not have a family history of diabetes, but did not want to develop diabetes. When he was diagnosed with lymphoma, he made a decision to be healthy and went on a diet to avoid getting diabetes.

I read about the Sugar Busters diet and what it does for you....It takes away all of the sugar-making food, and it is good for you. I didn’t want to be diabetic, so I tried it....For 4 or 5 weeks, nothing—and, then, all of a sudden, you wake up and you just drop it down to 175 [from 195 pounds]. Then, that’s when [the doctor] said “Stop. We don’t want you to get below that weight.”

The patient had not told his doctor that he was going on the Sugar Busters diet. In fact, none of the patients who went on diets told their doctors.

Food and Eating Problems Not Shared With Physicians

Patients and caregivers did not discuss food and eating problems with their doctors. In response to questions such as “Did your doctor or any other healthcare provider talk with you about food and eating?” or “Did you talk to your doctor or any other healthcare provider about food and eating problems?” patients and caregivers frequently replied “no.” This was despite the fact that patients were experiencing eating problems.

One male patient who had lost a significant amount of weight over some period wondered out loud during the interview:

I have lost about 40 pounds, and that is bothering me. I can’t eat enough to seem to gain my weight back. Also, I have lost the ability to walk....But, not eating is not allowing me to gain my muscle strength back. I am not sure, but I think that is what it is. I am going to talk to

my doctor about that.

This patient was obviously underweight, frail, and unable to walk without assistance; yet he had never talked with his doctor about his loss of appetite and weight loss. Similarly, a male caregiver whose wife was experiencing loss of appetite told about conversations with her that he found perplexing:

I have asked her whether her doctor has talked with her about food or eating matters, and she says no, he never mentioned that. You know I always say, gosh I am surprised.

This lack of communication between patients and doctors occurred despite the fact that some patients and caregivers wanted such information and explicitly said so during interviews. Both patients and caregivers believed that such matters were not the responsibility of the doctor. One female patient simply stated, “I would like to know whether there is a certain diet that I needed to go by.”

Some patients reported receiving nutritional counseling from a registered dietician, although they did not appear to benefit fully from the encounter. One male patient described his experience with the dietician who visited him while in the hospital after having surgery:

[She] gave me a pamphlet on what I should eat and what I shouldn’t eat. She was probably in there for about 45 minutes....One thing—I really wasn’t interested at that particular time.

A male caregiver said of his parents’ encounter with the registered dietician:

They (his father/patient and mother) went to see a dietician once. I don’t believe she really provided any good help. She was not sensitive enough to the situation and the foods he would like to eat.

Patients and caregivers most frequently reported that they received information from nurses, family members, friends, fellow patients, and caregivers in the waiting area of doctors’ offices, from magazines, and from the Internet. Some of the information they received was more reliable than other information.

Perceived Health-Promoting Qualities of Foods

Patients and caregivers often imbued certain foods and diets with health-promoting qualities without corroborating scientific evidence. Some patients stopped eating fat, some stopped eating sugar, and some began eating large quantities of particular foods. One female caregiver said about her husband’s recent increased consumption of peanuts: “They are dry roasted, but they are supposedly good for him so I haven’t said a word to him about that once.” Another female caregiver commented on her husband’s increased consumption of liver: “My husband talked to somebody who had cancer here in the waiting area, and he told him to eat beef liver for the iron.” Finally, another patient said a nurse suggested that dark chocolate is good for you but not white sugar and milk chocolate. Patients processed information in fragmented ways that were easy to understand, easy to implement, and consistent with their sense of self.

Alterations in Self-Identity

An individual’s sense of self-identify and self-esteem is derived through social interaction with others and with objects (including food) in their environment.^22,23 Persons come to view themselves as others view them based upon others’ impression of them.²⁴

Physical appearance of the body, including how one uses the body, is one of the most salient and frequently used markers for how others view us and how we come to view ourselves.²⁵ When persons experience a change in the body, as is frequently the case for persons with cancer (either because of the cancer itself or its treatment), they may experience what is referred to as a spoiling of identity, or stigma, related to a “defect of the body.”^26,27 This stigmatized identity may cause persons to alter their behavior, including limiting interaction with others or engaging in other self-protective behaviors designed to avoid embarrassment.^26,27 Although body size is intimately linked to self-identify, the present discussion focuses more on other aspects of the body.

Participants and their caregivers frequently reported that alterations in self-identity related to changes in their bodies, changes in the manner in which they must eat, and changes in taste caused patients to experience frustration and embarrassment, which led to reduced nutritional intake. One female caregiver described the difficulty her father, who was being treated for head and neck cancer, experienced in attempting to eat and drink:

He could not chew hard things…because he could not get his mouth to work....And, he still finds it frustrating. He can’t even drink coffee well, and it embarrasses him so much. He will be sitting on the porch and say: “I can’t, I can’t eat that much anymore, you know. I can’t eat the way I used to.”

Despite having an appetite for food, this man limited his dietary intake, not only because of the physical difficulty associated with eating, but because of the shame he experienced.

Several patients (for various reasons) reported that it took them an exceptionally long time to eat. For example, one female patient with head and neck cancer said:

It would take me 45 minutes to eat a meal....I take smaller bites, and it still takes me longer....To start with, I would get so tired eating that I didn’t care if I ate or not....I’d just as soon forget the rest of it.

A consequence of the change in time required to eat food was that some patients refused to eat in the presence of others. One man being treated for lymphoma reported:

I won’t go to the table with anyone else to eat, because it is so frustrating for me to be still sitting there, less than half finished with what I am eating, when everyone else is finished. I just eat alone most of the time.

This patient relied upon his daughter-in-law to bring him his meals to consume alone in his apartment. He confessed that he rarely finishes eating the food she brought him.

Not unexpectedly, many patients described alterations in their sense of taste. One woman described it this way: “Honey, have you ever tried to chew on a piece of paste board? That is what everything tasted like.” Another male patient said: “The only way you could tell what you were eating was by looking at it.” Patients described the foods that they had once “loved” as no longer “tasting good anymore.”

The foods we eat convey information both to ourselves and others regarding our social identity and status.^{18,21,28–32} Consumption of different foods distinguishes members of society according to categories of those who are healthy versus those who are sick and between adults and children. For example, red meat may be associated with strength and masculinity, chocolate may be linked to romance, and chicken soup may be connected to being sick. These connotations may take on particular significance for cancer patients, who may not be able to eat the foods they enjoyed prior to their cancer diagnosis.

Two male patients (one with colon cancer and one with lymphoma) specifically described their relationship with steak. The first patient lamented:

At the extreme, I have not lost my appetite. I don’t eat nearly as much, though, and food doesn’t taste good to me. Of course, steaks have always been my favorite....Oh man, I used to love big old juicy steaks. And, I just don’t do them justice anymore.

The second patient similarly observed:

My favorite was steak, and I say was because I haven’t been able to eat anything hardly since they operated on this tumor. I was a sort of meat and potatoes guy, but I am not able to eat any of that now. I have been eating soft foods. I eat soups and I live on Boost and stuff like that for the past 2 years.

Thus, many patients are no longer able to consume the foods that once symbolically conveyed meaning to others regarding their social status. This seemed to be more the case for men than for women, especially in regard to the consumption of red meat, which historically has conferred a higher status upon its consumers.^28,29

Food is also used to symbolically mark certain events, either particular meals or special occasions.^30,33 For example, there are normative expectations regarding what, when, and with whom particular foods and food combinations may be eaten. There are also some foods that are only consumed when one dines out with others. This was particularly the case with Mexican food, which several patients claimed they no longer were able to consume.

Yes, I can’t stand anything spicy. And I love spicy foods, Mexican foods and Italian foods. Well, I just can’t take the spice. It just burns me up. My mouth is so sore. I realize that food now is not the food I used to know.

Thus, not being able to consume foods that one typically consumed while eating out interferes with the commensal aspects of meals and may reduce food intake.

Discussion

Eating is a complex biological and psychosocial phenomenon involving many factors. Brian Wansink estimates that the average person makes over 200 decisions about food every day.³⁴ Older cancer patients, because of both their age and their illness, may experience many problems with eating that influence the complexity and number of decisions they (and their caregivers) must make about eating.³⁵ Because identifying the underlying cause of involuntary weight loss is crucial in developing targeted therapeutic interventions and nutritional well-being is critical to patients’ tolerance of cancer treatment and overall outcomes, factors that may affect patients’ eating behaviors must be taken into account when establishing a comprehensive treatment plan.³⁵ Social factors amenable to intervention, including attitudes, beliefs, and interactions with others, must be specifically addressed.

In our qualitative investigation, we identified several important social factors that may contribute to undereating among older adults with cancer. Primary among these social factors is the belief held by both patients and caregivers that weight loss is a good thing. This belief is consistent with reports in the popular media that weight loss produces positive benefits for persons who are overweight. Cancer patients and caregivers in this study reported that their source of nutrition-related information was the popular media. These media messages are not tempered by warnings that weight loss may be harmful to persons who are older or to those who have an illness.

Nearly one-third of older adults are obese in the United States, and this prevalence is expected to increase.^36,37 Although there are a small number of randomized trials showing a reduction in cardiovascular disease risk in older adults with intentional weight loss, weight loss may actually be associated with potential harm in older adults. In fact, the American Society for Nutrition and the Obesity Society recently issued a joint position statement highlighting this controversy and strongly urging that future research evaluate both the benefits and risks (namely loss of lean muscle mass, functional decline, and impact on quality of life) prior to making recommendations to lose weight among all older adults, not only those who are ill.³⁸

Nonetheless, based upon their beliefs that weight loss is desirable, several patients reported going on diets to keep weight off they had lost. This behavior was positively reinforced by family caregivers, who believed that patients ought to lose weight. Beliefs and behaviors associated with weight loss were not addressed by physicians or other healthcare providers because patients, caregivers, and doctors did not communicate with each another about these matters.

Patients did not believe that concerns with nutrition were either an appropriate or high priority matter to bring to the attention of their physicians; and, as far as patients could recall, their physicians did not broach the subject with them. There are many possible reasons why physicians and healthcare providers may not address weight loss or nutritional issues with their patients: limited nutrition education and knowledge, belief that weight loss is beneficial for older adults who are overweight or obese, low priority of nutrition, lack of evidence that nutritional intervention affects patient outcomes, lack of established procedures and standardized assessments, time consumption of screening and implementation of nutritional treatment, uncertainty over whose responsibility it is to address nutritional matters, lack of multidisciplinary teams, lack of involvement of registered dieticians, lack of a perceived value of information received from nutrition professionals, and patients’ perception that nutrition is not part of medical care.

Patients frequently do not eat when they have been diagnosed with cancer because of physiologic and anatomic sequelae associated with the cancer and its treatment. Additionally, we found that patients did not eat as much as they could because of changes in their self-image. Feelings of frustration and embarrassment, even among family members, led patients to consume less than they were physically able to eat. Patients felt that they were a burden to family members and friends because of the increased time it took them to consume foods, which caused persons to remain at the table longer than they normally would have. Patients were also embarrassed by changes in food preferences and in the way they physically ate, which may not have even been noticeable to others. These eating issues have a psychosocial component, as well as a physical component, and may additionally warrant appropriate cognitive and behavioral interventions.³⁹

Behaviors and attitudes of patients and caregivers may lead to alterations in eating behaviors beyond the cancer itself or its treatment or sequelae, many of which are potentially modifiable with appropriate communication and intervention. Many physicians and medical students are poorly equipped to address nutritional issues in their patients.⁴⁰ The findings of this study highlight the importance of integrating nutritional and psychosocial aspects of illness into medical school education and residency and fellowship (eg, oncology) training programs. Patients would then be less reticent to ask about and physicians more likely to identify and address nutritional issues either directly or through referrals to the appropriate professionals, especially registered dieticians.

This study was limited by its small sample size; diverse patient population (who were at various stages of illness); lack of measured weight and height; and lack of access to patient charts, where nutritional assessment or consultations may have been documented. Consequently, generalizability of study findings is limited by these factors. The results of this study can be used, however, to validate our findings in a larger observational study. From the patients’ perspective, the most important factors are those related to their perceptions of weight loss and dieting behaviors. To our knowledge, this is the first article to report that older cancer patients actually go on diets to lose weight while undergoing cancer treatment. The extent of this behavior is unknown. From the healthcare providers’ perspectives, further investigation of barriers to the identification and appropriate management of nutritional problems in the cancer care setting is clearly warranted. Additionally, our findings might be used to test an intervention in a randomized clinical trial that would be designed to improve nutritional status in at-risk older cancer patients. A method that teaches patients and their caregivers how to communicate their nutritional problems, as well as other symptoms, with their healthcare providers may be especially useful in this setting.