The Study on the Medical and Nursing Service Needs of the Terminal Cancer Patients and Their Caregivers

말기암 환자와 가족의 의료 및 간호 서비스 요구

In this study, we attempted to investigate the needs and problems of the terminal cancer patients and their family caregivers to provide them with nursing information to improve their quality of life and prepare for a peaceful death. Data was collected from August 1, 1995 to July 31, 1996 at the internal medicine unit of S hospital in Seoul area with the two groups of participants who were family members of terminal cancer patients seventy four of them were in-patients and 34 were out-patients who were discharged from the same hospital for home care. The research tool used in this study has been developed by selecting the questionnaires from various references, modifying them for our purpose and refining them based on the results of preliminary study. While general background information about the patients was obtained by reviewing their medical records, all other information was collected by interviewing the primary family caregivers of the patients using the questionnaire. The data collected were analyzed with the SPSS PC/sup +/ program. The results of this study are summarized as follows ; 1) Most frequently complained symptoms of the terminal cancer patients were in the order of pain(87%), weakness(86.1%), anorexia(83.3%) and fatigue (80.6%). 2) Main therapies for the terminal cancer patients were pain control (58.3%), hyperalimentation(47.2%) and antibiotics(21.3%). 3) Special medical devices that terminal cancer patients used most were oxygen device (11.1%), and feeding tube(5.6%). Other devices were used by less than 5% of the patients. 4) The mobility of 70.4% of the patients was worse than ECOG 3 level, they had to stay in bed more than 50% of a day. 5) Patients wanted their medical staffs to help relieve pain(45.4%), various physical symptoms(29.6%), and problems associated with their emotion(11.1%). 6) 16.7% of the family caregivers hoped for full recovery of the patients, refusing to admit the status of the patients. Also, 37% wished for the extension of the patient's life at least for 6 months. 7) Only 38.9% of the family members was preparing for the patient's funeral. 8) 45.4% of family caregivers prefer hospital as the place for the patient's death, 39.8% their own home, and 14.8% undetermined. 9) Caregivers of the patients were mostly close family members, i.e., spouse(62%), and sons and daughters or daughter-in-laws(21.3%). 10) 43.5% of the family caregivers were aware of hospice care. 46.8% of them learned about the hospice care from the mass media, 27.7% from health professionals, and the rest from books and other sources. 11) Caregivers were asked about the most difficult problems they encounter in home care, 41 of them pointed out the lack of health professionals they can contact, counsel and get help from in case of emergency, 17 identified the difficulty of finding appropriate transportation to hospital, and 13 stated the difficulty of admission in hospital as needed. 12) 93.6% of family caregivers demanded 24-hour hot line, 80% the visiting nurses and doctors, and 69.4% the volunteer's help. The above results indicate that terminal patients and their family caregivers demand help from qualified health professionals whenever necessary. Hospice care system led by well-trained medical and nursing staffs is one of the viable answers for such demands.