本研究目的為探討晚期癌症病人及家屬對疾病之不確定感與希望狀態的預測因子,採立意取樣及面對面訪談的方式進行收案,於2008年9月1日至2009年3月31日在北部某醫學中心進行,共收案87位病人及125位家屬,研究工具包括基本資料表、Mishel 疾病不確定感量表及赫氏希望量表,結果發現27.6%病人完全瞭解病情,只有9.2%已預先簽署不施行心肺復甦術意願書,而4.6%預先簽署選擇安寧緩和醫療意願書,70.4%家屬完全瞭解病人的病情,有49.6%已預先簽署不施行心肺復甦術同意書,而23.2%協助預先簽署選擇安寧緩和醫療意願書,家屬在病情瞭解程度、預先簽署不施行心肺復甦術及選擇安寧緩和醫療意願書的比率較病人為高,末期醫療決策大多數仍由家屬決定。 家屬的希望狀態平均總分為30.61±4.50分(量表總分為10-40分,分數愈高代表希望愈高),病人職業為「工」組,比病人職業為「無」組,及家屬宗教信仰為「民間信仰或道教」組,比家屬宗教信仰為「無」組,其希望狀態分數較低;家屬的不確定感平均總分數為62.92±11.38分(量表總分為23-115分,分數愈高代表不確定感程度愈高),家屬病情瞭解程度為「非常不瞭解」組,比家屬病情瞭解程度為「完全瞭解」組、家屬「沒有預先簽署選擇安寧緩和醫療意願書」組,比家屬「有預先簽署選擇安寧緩和醫療意願書」組、家屬婚姻狀態為「未婚、離婚或喪偶」組,比家屬婚姻狀態為「已婚」組及病人「沒有接受安寧共同照護」組,比病人「有接受安寧共同照護」組,其不確定感較高。 病人及家屬有接受安寧共同照護者,有助於末期醫療決策之進行,及可能降低家屬之不確定感,期望此研究結果能提供醫療人員參考,協助家屬讓病人對自己的病情及醫療決策有參與的機會,依照個人自主的意願,降低家屬的不確定感,獲得更適切的醫療照顧。
This research aims to discuss the predictive factors of uncertainty and hope of the patients with advanced cancer and their families. The cases were conducted in a medical center in northern Taiwan from September 9th 2008 to March 31st 2009 by purposive sampling and interviewing. 87 patients and 125 family members participated in the research. The research instruments include background data form, Mishel’s Uncertainty in Illness Scale Chinese Version and Herth Hope Index. As it turned out, 27.6% patients are fully aware of their disease, only 9.2% of them have signed the agreement of DNR, 4.6% have signed the agreement of hospice care, 70.4% family members are fully aware of the patients’ disease, 49.6% of them have signed the agreement of DNR and 23.2% have assisted signing the agreement of hospice care. This showed that the family members know more about the state of illness than the patients and are more likely to sign the agreement of DNR and hospice care. Most medical decisions at the end of life are still made by the families. The average total score of the families’ hope state is 30.61±4.50 (the total score is 10-40, a higher score means a higher level of hope.) and the hope state scores of the patient group labeled as workers and the family group labeled as Folk Religion or Taoism are all lower than their reference groups: the Unemployed and the Irreligious; the average total score of the families’ uncertainty about the disease is 62.92±11.38 (the total score is 23-115, a higher score means a higher level of uncertainty.) and the uncertainty scores of the family group labeled as Poorly Informed about the state of illness, the family group that didn’t sign the agreement of hospice care, the family group that remain single, divorced or widowed and the patient group that didn’t accept hospice shared Care are all higher than their reference ones: the fully informed, the families that signed the agreement of hospice care, the married families and the patient group that accepted hospice shared care. For those patients and their families who have accepted the hospice shared care, it will be easier to make medical decision at the end of life and possibly reduce the family’s uncertainty. This research result is expected to serve as references for medical staff; assist the families to allow the patients to know about their own disease and have equal opportunities for medical decision according to their own wishes; reduce the families’ uncertainty and get better suitable medical care for the patients.