The Hospice Journal

ISSN: 0742-969X (Print) (Online) Journal homepage: http://www.tandfonline.com/loi/ippc19

Anorexia in the Terminally Ill Cancer Patient: The Emotional Impact on the Patient and the Family Constance M. Holden To cite this article: Constance M. Holden (1991) Anorexia in the Terminally Ill Cancer Patient: The Emotional Impact on the Patient and the Family, The Hospice Journal, 7:3, 73-84, DOI: 10.1080/0742-969X.1991.11882706 To link to this article: http://dx.doi.org/10.1080/0742-969X.1991.11882706

Published online: 13 Sep 2017.

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Anorexia in the Terminally Ill Cancer Patient: The Emotional Impact on the Patient and the Family Constance M. Holden

ABSTRACT. Anorexia is a troublesome symptom, experienced by the majority of cancer patients. Loss of appetite in the terminally ill patient is seen as a certain sign of impending death and is a source of considerable anxiety. This study was designed to explore the ways in which terminally ill cancer patients and their primary caregivers view and respond to the patient's loss of appetite. Semi-structured interviews were conducted to elicit data. Findings suggest that loss of appetite is indeed a source of anxiety and conflict within the fam­ ily, and that the amount of food and fluid taken is used as a barome­ ter of the patient's overall condition. Findings also suggest that care­ giver anxiety is more pronounced in the female than in the male because the patient's inability to eat impacts upon her customary role identity. The majority of patients viewed anorexia to be of less concern than other problems, and also voiced a preference to have their family members focus less energy on encouraging them to eat.

THE PROBLEM Patients in the terminal phase of cancer must cope with a variety of unpleasant symptoms including pain, nausea, vomiting, weakConstance M. Holden, RN, MSN, is the manager of North Hospice at North Memorial Medical Center in Minnesota, MN. The study was conducted while the author was a graduate student at the University of Wisconsin-Madison. Correspondence may be addressed to: Constance M. Holden, North Hospice, North Memorial Medical Center, 3300 Oakdale North, Robbinsdale, MN 55422. The Hospice Journal, Vol. 7(3) 1991 © 1991 by The Haworth Press, Inc. All rights reserved.

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ness, and anorexia. Patient and family response to a given symptom is determined by the symptom's severity and the emotional signifi­ cance the symptom holds for the individual and his or her care­ takers. Because food and eating have strong symbolic connections with survival, the quantity of food-fluid intake can become a ba­ rometer of the patient's well-being. Quantity of food and fluid in­ take is the first information offered when a family is queried about the patient's condition. The preparation and serving of food is an expression of love and caring. For caregivers, comfort is derived from performing this fa­ miliar function. When the patient deteriorates and is unable to eat, the caregiver often becomes obsessed with -serving something that he or she will eat. As each attempt to feed fails, caregivers feel increasingly personally rejected, helpless, frustrated, and angry (Dixon, Emery, & Hurley, 1985). They may feel what Kastenbaum calls catastrophic anxiety or fury and helplessness when it becomes apparent that despite their best efforts, they are losing the battle and death is going to be the victor (Kastenbaum, 1978). There may also be conflict among family members about the best approach to pursue. Some may favor allowing the patient to not eat, while others will insist on force feeding (Gallagher-Allred, 1989). Family sense of responsibility may be heightened because, with definitive diagnosis, the patient's intake becomes a matter of family concern. An association is begun to be made between good nutri­ tion and success in treatment (Goldberg, 1981). Family members may accuse the patient of "giving up" and not trying to eat. Food intake can become a battleground for patients who have been deprived of control in so many other areas of their lives (Donovan & Pierce, 1976). In a cookbook for cancer patients, family members are warned that the refusal to eat is a normal and legitimate expression of anger and frustration (Fishman & Anrod, 1981). Benoliel (1978) suggests that for families coping with cancer longstanding rituals in the relationship no longer remain as confir­ mation of social and role realities. As patients and family members cope with progressive loss of these customary role relationships, they are gradually preparing for the ultimate loss: death (Bettese, 1981).

Constance M. Holden

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Although researchers have identified several causes for anorexia, most treatments designed to control and reverse it have proved inef­ fective. The recent reports of some weight gain with megastrol ace­ tate, have not led to a clinical breakthough (Enck, 1990). That be­ ing the case, current interventions will be most beneficial if oriented toward helping patients and families cope with the problem and its emotional ramifications.

METHODOLOGY This study population consisted of 14 patients and their respec­ tive primary caregivers, randomly selected from four Wisconsin hospice programs. The predominant relationship represented was married couples (Table 1). A semi-structured interview with questions intended to elicit con­ crete and contextual data was utilized. The questionnaires are repro­ duced as Figures 1 and 2. The development of the questions for the two interview schedules was based on a review of the literature and hospice clinical experi­ ence. Two cancer nursing specialists reviewed the items for content validity. Four patient-caregiver pairs reviewed questions for com­ prehension. Both patient and caregiver interview schedules con­ sisted of eight open-ended questions and two rating scales. Twelve of the interviews were conducted in patients' homes, two in an in­ patient setting. With ten of the fourteen pairs, it was possible to interview patients and caregivers separately.

RESULTS Six (42%) of the subject pairs agreed on the approximate time when a change in eating habits became noticeable. Patients, on the other hand, tended to recall an earlier onset of anorexia, sometimes even prior to the time of diagnosis. Patients and caregivers were asked to describe the patients' actual intake during the two days prior to the interview. They described problems ranging from mild food aversion to no oral intake whatever. Twelve of the 14 care­ givers gave detailed accounts of the amounts of food served com­ pared to that actually eaten. The prevailing theme of their reports

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76 Table 1

Background Characteristics of the Sample

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AGE

Patient

Caregiver

29-82

25-82

63.8

57.2

Patient

Caregiver

Range Mean

SEX

n

!

n

!

Male

9

64

5

36

Female

5

36

9

64

RELATIONSHIPS REPRESENTED

n

Husband/wife

7

50

Wife/husband

4

28

Daughter/father

1

7

Son/mother

1

7

Brother/sister

1

8

was that the patient was not eating not much or not eating well. In contrast, patients tended to speak more positively about what they had eaten and they were less likely to discuss quantity. The follow­ ing responses were typical: A 70 year old female patient stated: I've been liking cold things, especially grapefruit juice, milk or ice cream.

Constance M. Holden

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Figure 1 Interview Schedule - Patient I have been told that you have been experiencing a loss of appetite

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or difficulty eating.

I am aware that this is a common problem for

people who have cancer and would like to know more about how you feel about this problem.

May I ask you some questions.

1.

When did you first notice a change in your eating habits?

2.

Please tell me about these changes and about what you have had to eat or drink the past two days.

3.

Do you take your meals with the rest of your family? sit at the table?

Do you

If not, how do you feel about not being able

to share in this activity? 4.

Describe your family's reaction to your loss of appetite.

5.

Have the changes in your eating habits changed those of your caregiver?

6.

Those of family members?

If so, how?

What do you believe are the reason(s) for your loss of appetite or change in eating habits?

7.

How important is eating to your well-being? Very important Of some importance Unimportant

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8.

What do you think will happen if you continue to eat poorly?

9.

Considering all of the problems that you are having at this

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time, how would you rate your loss of appetite? My greatest concern Not as troublesome as some other problems Not of much concern What problems are of greater concern? 10.

What suggestions would you have for your family in dealing with your loss of appetite?

Her husband reported: She doesn't eat more than a bite or two of food.She does drink small amounts of juice, not nearly enough. I make whatever she says she wants, but she doesn't eat it. Many caregivers spoke about the amount of time and energy they spent on selecting and preparing food for the patient.Some spoke of nutritional advice given to them at time of diagnosis and seemed determined to still abide by those suggestions. Both patients and caregivers spoke often with sadness about the Jost opportunity to eat together.One female patient shared, I sit at the table, sometimes ...with my glass of water, that is. Sometimes I'm too weak, sometimes too tired, but I like to act like things are as normal as possible. All but one of the caregivers reported alterations in their own eating habits.One woman shared these poignant thoughts:

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Constance M. Holden

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Oh yes, I've gained 30 pounds. I never cook anymore. I eat my main meal at work at noon and then I just snack at home. I'll eat a half gallon of ice cream in front of the TV. I never sit at the table, in fact, I moved it into the corner of the living­ room. I didn't even put up the summer porch table this year because I knew I'd never eat at it. It's too much of a reminder to sit at it and eat alone. You know, I eat like I did when I was a little girl. My mother would always feed me when I was anxious. (This brought on a flood of tears.) Caregivers were asked about their role as "food preparer." The actual comments clearly express the anger, frustration, sadness and fear. I've always done the cooking and have loved it. Now it takes him two hours to eat what I finish in 15 minutes. I leave him sitting in front of the TV while I do what I have to do. He (the patient) used to cook, too. We had some special reci­ pes that we would make together. It just isn't any fun any­ more. I feel so sad when I'm in the kitchen. I understand that he can't eat but I do get angry when he won't try after I've worked so hard to fix it. I used to love to cook. It is so frightening for me to see her lose weight. I knew some­ thing was drastically wrong. I blamed myself for not feeding her the right things. Patients and caregivers generally agreed on the importance of eating for the patient's well-being. Some caregivers connected keeping the person alive with eating. Twelve of them felt that death would result if the patient continued . to eat poorly. One wife stated, Oh, it's very important to eat. He won't be able to live if he doesn't keep his nutrition up. The patient commented: If I stop eating, that will be it!

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Figure 2 Interview Schedule - Primary Caregiver I have been told that (patient's name) has been experiencing a loss

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of appetite.

I am aware that this is a common problem for people

�ho have cancer and would like to know more about how it affects family members. 1.

May I ask you some questions?

When did you first notice a change in (patient's name) eating habits?

2.

Please tell me about these changes and about what (patient's name) has been eating and drinking the past two days?

3.

Have (patient's name) eating difficulties caused changes in your eating habits?

4.

If yes, how?

Were you the person responsible for food preparation prior to (patient's name) illness?

Are you the person responsible for

preparing his/her food now? 5.

What changes has (patient's name) loss of appetite caused in the way you prepare food?

6.

How do these changes make you feel?

What do you believe are the reason(s) for (patient's name) loss of appetite or change in eating habits?

Constance M. Holden 7.

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How important do you believe eating is to (patient's name) well-being? Very important Of some importance

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Unimportant a.

What do you think will happen if (patient's name) continues to not eat or to eat poorly?

9.

Considering all of the problems that you and {patient's name) are having at this time, how would you rate his/her loss of appetite? My greatest concern Not as troublesome as some other problems Not of much concern What problems are of greater concern?

10.

Do you have any other comments that you think would help my understanding this problem?

In comparison to patients, caregivers frequently reported ano­ rexia to be of greater concern than other problems (Table 2). Pa­ tients cited other symptoms such as pain, breathing difficulties, weakness, draining wounds, fluid build up, fear of death, and fear of being alone as more important. Nine (64%) of the patients indicated they appreciated their care­ givers' efforts, while four (28%) reported their caregivers tried too hard and this had become a source of conflict and/or anger.

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82 Table 2

Rating of Anorexia Relative to Other Problems (n = 28)

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Patient

Caregiver

RATING

n

!.

n

!.

Of great concern

1

7

6

43

9

64

8

57

4

28

Not as troublesome as other problems Not of much concern

She worries too much. She tries to force me to eat when I don't want to. It is really a source of conflict and it is driving me nuts. It shows that he cares, but sometimes I get angry because he keeps at me. When asked how they would like family members to respond to their anorexia, the vast majority (71 % ) of patients indicated that family members should be less assertive or should simply let them choose what and how much they wanted to eat. DISCUSSION In general, patients and primary caregivers responded to the pa­ tient's loss of appetite with the same emotions that accompany any loss: anger, fear, frustration, sadness, and less often - acceptance. Patients were typically more satisfied with their intake than were their caregivers. Both groups expressed sadness when talking about mealtimes and the lost opportunity for interpersonal interaction. Fe­ male caregivers, who held food preparer roles prior to the patient's

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Constance M. Holden

83

illness, were the most likely to grieve their role loss. They ex­ pressed fear, anger and frustration about their inability to get the patient to eat. Both groups agreed that eating contributed to the patient's well-being. Caregivers associated death with the patient's continued inability to eat. The anorexia was of greater concern to caregivers than to patients who cited other symptoms as more significant. The overall impres­ sion was that caregivers were expending tremendous amounts of emotional and physical energy attempting to cope with a problem to which patients were quite resigned. IMPLICATIONS In spite of the limited sample size, implications can be derived from the study. Anorexia is a physiological problem that has com­ plex psychosocial ramifications for the dying patient and his or her family. Intervention by health care professionals must go beyond the simple provision of dietary advice if it is to be therapeutic. These interventions must be grounded in an understanding that the patient's loss of appetite evokes the same emotional reactions that accompany all loss. A recurrent theme in the patients' responses was that they would prefer to have their family members take a less assertive approach to their eating difficulties. The facilitation of open discussion be­ tween patient and family may enable the patient to state this wish. Caregivers, whose own behaviors are affected by their becoming less involved in food preparation, may be encouraged to participate in other nurturing activities such as reading to the patient, providing massage, or simply sitting with the patient. Family members may cope better with the anorexia if they have the knowledge that it is a physiologically explainable and expected consequence of the dis­ ·ease over which the patient has little control. Until the discovery of an effective means of arresting, control­ ling, or reversing the anorexia of cancer, professional efforts will be most effective if they are focused upon helping patients and families identify and address the feelings that accompany this significant loss. As family members gain comfort with the patient's inability to eat, they also move toward acceptance of the impending death.

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REFERENCES Benoliel, J.C. (1978). Care, communication, and human dignity. In Garfield, C. (Ed.) Psychosocial care of the dying patient. New York: McGraw Hill. Bettese, J.M. (1981). Family stress and mediation in cancer. In Ahmed, P. (Ed.) Living and dying with cancer. New York: Elsevier. Dixon, C.E., Emery, A.W. Jr., Hurley, R.S. (1985). Nutrition and patients with a limited life expectancy. American Journal of Hospice Care, 2(3), 27-33. Donovan, M.I., & Pierce, S.G. (1976). Cancer care nursing. New York: Apple­ ton-Century Crofts. Enck, R. (1990). Anorexia and cachexia: An update. American Journal of Hos­ pice Care. 7(5), 13-15. Fishman, J., & Anrod B. (1981). Something has got to taste good. Kansas City: McNeel, Inc. Gallagher-Allred, C. (1989). Nutritional care of the tenninal/y ill. Aspen Publica­ tion, Rockville, MD. Goldberg, J. (1981). Psychotherapeutic treatment of cancer patients. New York: Free Press. Kastenbaum, R. (1978). In Control. In Garfield, C. (Ed.) Psychosocial care of the dying patient. New York: McGraw Hill.

Anorexia in the terminally ill cancer patient: the emotional impact on the patient and the family.

Anorexia is a troublesome symptom, experienced by the majority of cancer patients. Loss of appetite in the terminally ill patient is seen as a certain...
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