TY - JOUR
T1 - The care strategy for families of terminally ill cancer patients who become unable to take nourishment orally
T2 - Recommendations from a nationwide survey of bereaved family members' experiences
AU - Yamagishi, Akemi
AU - Morita, Tatsuya
AU - Miyashita, Mitsunori
AU - Sato, Kazuki
AU - Tsuneto, Satoru
AU - Shima, Yasuo
N1 - Funding Information:
This study was supported by the Japan Hospice Palliative Care Foundation . The funder was not involved in the conduct of the study or development of the submission. The authors declare no conflicts of interest.
Copyright:
Copyright 2011 Elsevier B.V., All rights reserved.
PY - 2010/11
Y1 - 2010/11
N2 - Context: Anorexia is one of the most common symptoms in terminally ill cancer patients and causes considerable distress for both patients and their families. Objectives: The primary aims of the present study were to clarify the level of the family-perceived emotional distress and necessity for improvement in professional practice when a relative becomes unable to take nourishment orally and explore the determinants of these outcomes. The ultimate aim was to develop an effective care strategy for family members of terminally ill cancer patients who become unable to take nourishment orally. Methods: A cross-sectional anonymous nationwide survey was conducted involving 662 bereaved family members of cancer patients who had been admitted to 95 palliative care units throughout Japan. Results: A total of 452 bereaved family members returned the questionnaires (effective response rate, 68%). Overall, 80% of family members experienced the situation where a terminally ill relative became unable to take nourishment orally. The reported level of family-perceived emotional distress was very distressing (38%) and distressing (33%). Responses to the family-perceived necessity for improvement in professional practice they received were much improvement needed (4%), considerable improvement needed (10%), and some improvement needed (46%). The independent determinants of a high level of family perceived emotional distress were a sense of helplessness and guilt, and belief that dehydration causes profound distress for dying patients. Independent determinants of a high level of family-perceived necessity for improvement in professional practice were a sense of helplessness and guilt, experience that health care providers did not pay enough attention to family members' concerns, and insufficient relief of the patient's symptoms. Conclusion: A considerable number of family members experienced high levels of emotional distress when a terminally ill cancer patient became unable to take nourishment orally, and many perceived a necessity for improvement in professional practice they received. A recommended care strategy includes the following four major domains: 1) relieving the family members' sense of helplessness and guilt, 2) providing up-to-date information about hydration and nutrition at the end of life, 3) understanding family members' concerns and providing emotional support, and 4) relieving the patient's symptoms. Further research is needed to evaluate the effects of this care strategy on family members' outcomes, including clinical studies to obtain more accurate understanding of the symptomatic effects of hydration and nutrition in terminally ill cancer patients.
AB - Context: Anorexia is one of the most common symptoms in terminally ill cancer patients and causes considerable distress for both patients and their families. Objectives: The primary aims of the present study were to clarify the level of the family-perceived emotional distress and necessity for improvement in professional practice when a relative becomes unable to take nourishment orally and explore the determinants of these outcomes. The ultimate aim was to develop an effective care strategy for family members of terminally ill cancer patients who become unable to take nourishment orally. Methods: A cross-sectional anonymous nationwide survey was conducted involving 662 bereaved family members of cancer patients who had been admitted to 95 palliative care units throughout Japan. Results: A total of 452 bereaved family members returned the questionnaires (effective response rate, 68%). Overall, 80% of family members experienced the situation where a terminally ill relative became unable to take nourishment orally. The reported level of family-perceived emotional distress was very distressing (38%) and distressing (33%). Responses to the family-perceived necessity for improvement in professional practice they received were much improvement needed (4%), considerable improvement needed (10%), and some improvement needed (46%). The independent determinants of a high level of family perceived emotional distress were a sense of helplessness and guilt, and belief that dehydration causes profound distress for dying patients. Independent determinants of a high level of family-perceived necessity for improvement in professional practice were a sense of helplessness and guilt, experience that health care providers did not pay enough attention to family members' concerns, and insufficient relief of the patient's symptoms. Conclusion: A considerable number of family members experienced high levels of emotional distress when a terminally ill cancer patient became unable to take nourishment orally, and many perceived a necessity for improvement in professional practice they received. A recommended care strategy includes the following four major domains: 1) relieving the family members' sense of helplessness and guilt, 2) providing up-to-date information about hydration and nutrition at the end of life, 3) understanding family members' concerns and providing emotional support, and 4) relieving the patient's symptoms. Further research is needed to evaluate the effects of this care strategy on family members' outcomes, including clinical studies to obtain more accurate understanding of the symptomatic effects of hydration and nutrition in terminally ill cancer patients.
KW - Anorexia
KW - Artificial hydration
KW - Cancer
KW - End of life
KW - Family
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U2 - 10.1016/j.jpainsymman.2010.02.025
DO - 10.1016/j.jpainsymman.2010.02.025
M3 - Article
C2 - 20800425
AN - SCOPUS:78349271633
VL - 40
SP - 671
EP - 683
JO - Journal of Pain and Symptom Management
JF - Journal of Pain and Symptom Management
SN - 0885-3924
IS - 5
ER -