Bereaved relatives’ perspectives of the patient’s oral intake towards the end of life: A qualitative study

Raijmakers, Natasja; Clark, Jean; Zuylen, Lia van; Allan, Simon; Heide, Agnes van der

doi:10.1177/0269216313477178

Cited by 27 publications

(47 citation statements)

References 22 publications

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“…The discrepancy in the rating of severity of swallowing does suggest, however, a need for a better communication between relatives and nursing staff. Raijmakers et al [8] studied the relatives' perspective of the patient's oral intake toward the end of life in 23 patients and found that relatives recalled limited communication with health care professionals concerning oral intake at the end of life. The results of our study seem to support the findings by Raijmakers et al [8] and underline the need for providing adequate information on swallowing problems to the relatives when a patient receives palliative care.…”

Section: Discussionmentioning

confidence: 99%

“…Raijmakers et al [8] studied the relatives' perspective of the patient's oral intake toward the end of life in 23 patients and found that relatives recalled limited communication with health care professionals concerning oral intake at the end of life. The results of our study seem to support the findings by Raijmakers et al [8] and underline the need for providing adequate information on swallowing problems to the relatives when a patient receives palliative care. Our data suggest however that this information should not be limited to swallowing problems only, but also focus on the links between these problems and other clinical symptoms, like loss of appetite.…”

Section: Discussionmentioning

confidence: 99%

“…They also suggested that swallowing problems are a predictive factor concerning quality of life in palliative care patients [9,11]. A recent study by Raijmakers et al [8] described that 23 bereaved relatives noted significant changes in patients' oral intake at the end of life [8]. Although these studies make strong recommendations for caregivers, they do not quantify the magnitude of swallowing problems in palliative care.…”

Section: Introductionmentioning

confidence: 99%

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Swallowing Problems at the End of the Palliative Phase: Incidence and Severity in 164 Unsedated Patients

et al. 2014

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Swallowing problems are reported to be a common finding in patients who receive palliative care. In existing literature, the incidence of swallowing problems is mostly described in small numbers of patients at the start of the palliative phase. As we hypothesized that the incidence of dysphagia might increase as the palliative phase progresses, this study describes the incidence of swallowing problems and related problems in 164 unsedated patients at the end of the palliative phase, defined by the last 72 h before their death. To determine the incidence of swallowing problems and related problems, questionnaires were completed bereaved by relatives and nursing staff. Our data shows that in the palliative phase the incidence of swallowing problems can be as high as 79 %. A significant correlation was found between swallowing problems and reduced psycho-social quality of life as assessed by nursing staff (ρ = -.284). Overall the nursing staff rated the incidence and severity of swallowing problems (and related problems like frequent coughing, loss of appetite, and problems with oral secretions) lower than the relatives. This study suggests that incidence of swallowing problems at the end of the palliative phase is high and that these difficulties may not only result in discomfort for patients, but also can raise concern for caregivers. More information and education on management of swallowing problems in palliative settings might be needed for both relatives and nursing staff. However, the data also suggest that any intervention should be proportional to the level of distress caused by the intervention.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Swallowing Problems at the End of the Palliative Phase: Incidence and Severity in 164 Unsedated Patients

et al. 2014

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“…According to relatives of palliative patients, it has been noted that oral intake towards the end of life holds a variety of meaningful traits ranging from nutritional value to social animation [23]. Equally variable, are caregiver's responses to the oral feeding of their palliative relative.…”

Section: Discussionmentioning

confidence: 99%

“…Equally variable, are caregiver's responses to the oral feeding of their palliative relative. Some view their relatives declining oral intake as a self-choice to be respected, while others feel the need to combat a declining oral intake as a method to delay death [23]. Thus, the views of the caregiver toward the feeding habits of their palliative elder, remain an important talking point during clinical encounters.…”

Section: Discussionmentioning

confidence: 99%

Multifactorial Causes of Failure to Thrive in a 79-Year-Old Male

Sacheli

Panthangi

2014

J Med Cases

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We discuss a case of a 79-year-old Caucasian male with a multifactoral etiology of failure to thrive. Without having any significant past medical problems, the patient's failure to thrive condition initiated following an acute stroke. Over the course of this and future hospitalizations, as well as inpatient care, numerous factors contributing to his failure to thrive were identified. These included: malnutrition, post stroke debility, dysphagia, anemia, depression and malignancy. This report serves to document a complicated case of failure to thrive in a geriatric patient with focused discussion of some etiological contributions to a failure to thrive condition. Additionally, we will describe some salient features pertaining to the clinical management of such cases.

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Population-Based Quality Indicators for End-of-Life Cancer Care

et al. 2020

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Improving the quality of cancer care is an international priority. Population-based quality indicators (QIs) are key to this process yet remain almost exclusively used for evaluating care during the early, often curative, stages of disease.OBJECTIVES To identify all existing QIs for the care of patients with cancer who have advanced disease and/or are at the end of life and to evaluate each indicator's measurement properties and appropriateness for use.EVIDENCE REVIEW For this systematic review, 5 electronic databases (MEDLINE, Embase, CINAHL, PsycINFO, and the Cochrane Library) were searched from inception through February 4, 2019, for studies describing the development, review, and/or testing of QIs for the care of patients with cancer who have advanced disease and/or are at the end of life. For each QI identified, descriptive information was extracted and 6 measurement properties (acceptability, evidence base, definition, feasibility, reliability, and validity) were assessed using previously established criteria, with 4 possible ratings: positive, intermediate, negative, and unknown. Ratings were collated and each QI classified as appropriate for use, inappropriate for use, or of limited testing. Among the QIs determined as appropriate for use, a recommended shortlist was generated by excluding those that were specific to patient subgroups and/or care settings; related QIs were identified, and the indicator with the highest rating was retained.FINDINGS The search yielded 7231 references, 35 of which (from 28 individual studies) met the eligibility criteria. Of 288 QIs extracted (260 unique), 103 (35.8%) evaluated physical aspects of care and 109 (37.8%) evaluated processes of care. Quality indicators relevant to psychosocial (18 [6.3%]) or spiritual and cultural (3 [1.0%]) care domains were limited. Eighty QIs (27.8%) were determined to be appropriate for use, 116 (40.3%) inappropriate for use, and 92 (31.9%) of limited testing. The measurement properties with the fewest positive assessments were acceptability (38 [13.2%]) and validity (63 [21.9%]). Benchmarking data were reported for only 16 QIs (5.6%). The final 15 recommended QIs came from 6 studies. CONCLUSIONS AND RELEVANCEThe findings suggest that only a small proportion of QIs developed for the care of patients with cancer who have advanced disease and/or are at the end of life have received adequate testing and/or are appropriate for use. Further testing may be needed, as is research to establish benchmarking data and to expand QIs relevant to psychosocial, cultural, and spiritual care domains.

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Bereaved relatives’ perspectives of the patient’s oral intake towards the end of life: A qualitative study

Abstract: This study revealed the complexity of meaning relatives' experiences with dying patients' decreasing oral intake. Their perceptions and concerns were related to their awareness of the imminent death. These findings can guide staff involved in care delivery to better support relatives.

Cited by 27 publications

References 22 publications

Swallowing Problems at the End of the Palliative Phase: Incidence and Severity in 164 Unsedated Patients

Swallowing Problems at the End of the Palliative Phase: Incidence and Severity in 164 Unsedated Patients

Multifactorial Causes of Failure to Thrive in a 79-Year-Old Male

Population-Based Quality Indicators for End-of-Life Cancer Care

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