Objectives Cancer cachexia creates a large burden for terminally ill patients with cancer. The main causes are a lack of knowledge of cancer cachexia and unsuccessful attempts to increase body weight. The role of nutritional support has not been clarified, and patients’ eating-related distress is poorly understood. There has been no study investigating into needs for nutritional support in an inpatient hospice. The primary aim of this study was to explore needs for nutritional support, eating-related distress and patients’ experiences.
Methods A survey was conducted involving 60 patients with advanced cancer in an inpatient hospice. We first asked about need for nutrition therapy in the inpatient hospice. We then asked whether patients had unmet needs for four items. The last question was composed of 19 items concerning patients’ experience of eating-related distress.
Results Thirty-seven patients responded (62%). Most of the patients, 28 of 37 (76%), had general unmet needs for nutrition therapy for cancer cachexia, and more than half needed specific support, such as ‘attention’ and ‘explanation’. The top 5 of the 19 items were mainly about daily diet, nutrition and losing weight. Of these, the top four belonged to the group of coping strategies and the fifth to the group of mechanisms originating from patients themselves.
Conclusions A number of terminally ill patients with cancer admitted to an inpatient hospice had need for nutritional support and experienced high levels of eating-related distress.
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Cancer cachexia creates a large physical and psychological burden for terminally ill patients with cancer, such as anorexia, weight loss and eating-related distress. The main causes are a lack of knowledge, unsuccessful attempts to increase body weight and expected occurrence of death.1–3 Previous data have suggested that more than 50% of patients with cancer have clinically significant weight loss at the time of diagnosis.4 ,5 This weight loss is associated with a reduction of response to treatment, shorter survival and poorer quality of life.4 ,6 ,7 In addition, the effects of long-term nutrition therapy for patients with advanced cancer (ie, enteral nutrition, parenteral nutrition and supplemental oral nutrition) have rarely been investigated, and the role of nutritional support has not been clarified.8 ,9 These conflicting factors may cause eating-related distress in patients and family members. Despite its frequency and importance, eating-related distress is poorly understood.10 ,11 There is no study investigating into needs for nutritional support of terminally ill patients with cancer admitted to an inpatient hospice. Therefore, a survey was conducted involving 60 patients with advanced cancer in an inpatient hospice. The primary aim was to explore needs for nutritional support, eating-related distress and patients’ experiences when they became unable to take nourishment orally.
This study was carried out in Osaka City General Hospital, a designated cancer care hospital with 1063 beds. We explained the object of this study to 60 terminally ill patients with cancer admitted to an inpatient hospice using a document, provided their written informed consent, and asked participants to respond to questionnaires on the day of admission. Completion and return of the questionnaire was regarded as consent to participate in this study. The Institutional Review Board approved this study.
Primary palliative care physicians consecutively identified potential participants with the following inclusion criteria, an adult patient with cancer: (1) admitted to an inpatient hospice; (2) capable of replying to a self-reported questionnaire, (3) aware of the diagnosis of malignancy; (4) with no serious psychological distress recognised in the primary palliative care physician's interview.
The questionnaire for this study was developed by the authors on the basis of a systematic literature review and discussion among the authors.3 ,10–19 Face validity of the questionnaire was confirmed by a pilot test with five patients and four physicians.
We first asked the question ’Do you need staff with specific knowledge of nutrition therapy for cancer cachexia (bad influences from cancer, such as anorexia, early satiety and weight loss) in the inpatient hospice?’, which was evaluated as 1: very much, 2: some, 3: little, 4: no, or 5: I do not know. We then asked whether patients had unmet needs for four items as follows, with an answer of ‘yes’ or ‘no’: (1) you would like to propose ideas to improve food intake, (2) you would like to receive sufficient explanations about the reasons for anorexia and weight loss, (3) you would like attention to be paid to your distress about eating and (4) you would like to receive an intervention regarding the conflict concerning eating and food between you and your family members. The last question was composed of 19 items concerning patients’ experience of eating-related distress (table 3); they were evaluated by the degree of agreement with the following statements on a 4-point Likert-type scale of 1: no to 4: strongly agree.
Descriptive statistics were used to show the characteristics and presence or absence of needs for nutritional support. Characteristics were described in 60 patients who had received the questionnaire because we could not detect the individual patients who had responded to the survey due to its anonymous nature. We calculated the proportion of patients with a 95% CI with regard to the questions.
Of the 60 patients asked to participate in this survey (table 1), 37 patients responded (response rate, 62%) and 23 patients refused to participate. There were no data about the backgrounds of the participating patients.
Most of the patients, 28 of 37 (76% (95% CI 62 to 90)), had general unmet needs for staff with specific knowledge of nutrition therapy for cancer cachexia (table 2).
Specific support, such as ’attention to patients’ distress about eating’ and ’explanation of the reasons for anorexia and weight loss’, was needed by more than half of the patients who had general unmet needs for staff with specific knowledge of nutrition therapy for cancer cachexia: 17 of 28 (61% (43 to 79)) and 14 of 28 (50% (31 to 69)), respectively (table 2).
The top 5 of the 19 items concerning patients’ experience of eating-related distress were ’I feel it is a natural course of the disease that I cannot get enough nutrition and lose weight’, ’I have eaten what I want without consideration of calories and nutritional composition’, ’I have tried to eat various foods’, “I feel I should make an effort to get enough nutrition even if I have anorexia’ and ’I have concerned myself with my daily diet’: 60% (44 to 76), 55% (38 to 72), 46% (29 to 62), 44% (27 to 61) and 43% (26 to 59), respectively (table 3).
A review investigating the psychosocial effect of cancer cachexia revealed mechanisms leading to it, along with its various presentations and strategies for coping with it.3 In the same method we categorised patients’ experience of eating-related distress into four groups; mechanisms originating from patients themselves, mechanisms originating from the relationship between patients and their families, presentations and coping strategies. The top 4 of 19 items belong to the group of coping strategies, and the fifth to the group of mechanisms originating from the patients themselves (table 3).
To the best of our knowledge, this study is the first survey investigating into needs for nutritional support of terminally ill patients with cancer admitted to an inpatient hospice. We demonstrated, using a questionnaire survey in consecutive patients, that most of them had unmet needs for nutritional support (28 of 37, 76%). Specific support, such as ’attention to patients’ distress about eating’ and ’explanation of the reasons for anorexia and weight loss, was needed by many patients.
Depending on patients’ coping strategies, eating-related distress may escalate or de-escalate.3 In our study, the top 4 of the 19 items concerning patients’ experience of eating-related distress belong to the group of coping strategies.
Our data suggest that hopelessness, fretting and a shortage of information aggravated the patients’ eating-related distress, and that attention to their distress and the provision of explanations might alleviate it.
In terms of the eating-related distress of terminally ill patients with cancer, there were concerns over ’loss of appetite’, ’inability to eat’ and ’loss of weight’. Professionals may contribute to the relief of patients and family members by appreciating their efforts to cope, by giving advice on how to avoid futile activities and by explaining why anorexia and weight loss become irreversible,10 similarly to our study.
In our study, the experience of conflicts over food was the lowest-frequency item among the 19, and the need for intervention in such conflicts was low, in 5 of 28 (18%).
In contrast, Reid et al suggested that reduced dietary intake frequently became a source of conflict between patients and their families. Patients ate not because they wanted food but because they wanted to satisfy their family members who were encouraging them to eat. Family members often experienced feelings of rejection of their affection when food was refused by patients.11
This study had several limitations. First, patients who refused admission to the inpatient hospice were not included, so the findings cannot be generalised. Second, the changes in the patients’ beliefs before and after admission to the inpatient hospice might have had an effect. Third, lack of data on symptom burden is a major weakness, and the presence of unmeasured symptoms, such as dysphagia, dyspnoea, constipation and diarrhoea, might have affected the results. Fourth, the questionnaire for the present study had not been validated. However, there is no validated tool to estimate eating-related distress of terminally ill patients with cancer. Fifth, several questions that are yes/no have the potential to be affected by acquiescence bias. Sixth, no data was collected about the background of the patients entering into the survey and refusing participation.
Thus, we should pay more attention to patients’ needs and eating-related distress, sympathise with them and explain the mechanism of cancer cachexia as simply as possible. Japanese culture may differ from Western culture in how it affects the thinking and attitude of patients and their families, so we must explore a coping style unique to the Japanese and develop a care strategy in consideration of that.
A number of terminally ill patients with cancer admitted to an inpatient hospice had the need for nutritional support and experienced high levels of eating-related distress. Further prospective and comparative surveys need to be developed to establish indicators and outcomes of care for eating-related distress in an inpatient hospice.
- Received 25 August 2014.
- Revision received 21 November 2014.
- Accepted 19 December 2014.
Competing interests None.
Patient consent Obtained.
Provenance and peer review Not commissioned; externally peer reviewed.
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