Taiwan Over-seas Liver Transplant Recipients’Decision-Making Dilemma and Caring Experiences

• Main Authors: Chiung-Hsuan Huang, 黃瓊萱
• Other Authors: Fu-Jin Shih
• Format: Others
• Language: zh-TW
• Published: 2010
• Online Access: http://ndltd.ncl.edu.tw/handle/13019652054624300080

碩士 === 國立陽明大學 === 臨床暨社區護理研究所 === 98 === Aims Organ shortage for transplantation is a world-wide problem. To preserve life, some patients go overseas seeking the chance for liver transplantation (LT) in a country or region with more organs available. There is still lack of detailed study about the decision-making process, dilemmas and needs for overseas liver transplant recipients. This study aims to explore the dilemmas, contributing factors in the decision - making process and perceptions of care that overseas liver transplant recipients (OLTR) from Taiwan encountered. The results may serve as reference to improve the quality of related nursing care in the future. Methods An exploratory qualitative research method was used in this study. A purposive sample of OLTR was obtained from a leading LT hospital in Taiwan. Face-to-face in-depth interviews were conducted with a semi-structured interview guide to learn about their retrospective living experiences. Data were analyzed by qualitative content analysis. Results Fifteen OLTR (11 male, 4 female) aged between 41 and 68 years (mean 57.3) were interviewed. Fourteen OLTR underwent LT in Mainland China and one in the States. Their most important motivations were to save their lives from end-stage liver disease (ESLD) and the hopeless, helpless sense of unfinished life goals, as well as from the psychological torture of waiting for death. Their decision-making process leading to overseas liver transplantation (OLT) encompassed 3 sequential stages: (a) domestic LT waiting (stage I), (b) overseas liver transplantation (stage II), and (c) returning to Taiwan for post-transplant care (stage III). Stage I was subdivided into four phases: (a) informed of LT (phase Ia), (b) on LT waiting list (phase Ib), (c) OLT-data collection (phase Ic), and (d) OLT-data evaluation/decision (phase Id). Every stage and phase has its unique contents, factors, dilemmas and needs. Phase Ia consists of (a) seizing any possible treatment; (b) confirming the suggestion of LT; and (c) sighing over losing one’s life. Phase Ib comprises the considerations of (a) living donor LT is the first choice; (b) living donor is not available; and (c) wishing to have a good liver. The contents of phase Ic are (a) to understand unknown information; and (b) explore the unknown information from many aspects. Phase Id consists of (a) lacking security regarding the OLT ; (b) insisting on their decision; (c) making a decision with their relatives; (d) having no choice but the OLT; and (e) considering many pros and cons factors related to OLT. The contents of stage II are (a) support from relatives and friends; (b) psychological tolerance to wait for an OLT; (c) physical strength to wait for an OLT; (d) happiness over the news of available overseas cadaver liver; and (e) lack of security about quality of overseas medical care during the period of the OLT. Stage III comprises (a) choice of returning to Taiwan for follow-up treatment; (b) gratitude for resuming life; (c) hope for the post-LT recovery; (d) support from other OLTR, and (e) worry about disease recurrence. The factors for decision-making in phase Ia are (a) having a trust relationship with domestic LT surgeons; (b) having no treatment options rather than LT; (c) perceiving the hopeless nature of ESLD; and (d) being unwilling to wait and go through the dying process. The factors for decision-making in phase Ib are: (a) the options of transplant methods; (b) the willingness and feasibility of potential liver donor; and (c) worry that living-donor LT might affect the donor’s health, work, and family. The factors for decision-making in phase Ic are: (a) the degree of ESLD patients’ understanding; (b) the degree of faith in LT surgeons’ professionalism; and (c) the reports of media. The factors for decision-making in phase Id are: (a) the opportunity of cadaveric LT in Taiwan; (b) other OLTR’s reports of good experiences (famous figures in particular); (c) the partnership between LT surgeons in Taiwan and overseas; (d) support from relatives and friends, (e) responsibility of caring for the family, (f) sense of security from friends who are familiar with overseas medical treatment, (g) domestic LT surgeons’ agreement with OLT, (h) other OLTR’s failure experiences, and (i) OLT surgeons’ experiences of cadaver LT. The factor for decision-making in stage II is the survival from acute post-OLT stage. The factor for decision-making in stage III is the trust in quality of post-LT care in Taiwan. The dilemma for decision-making in phase Ia is that it is difficult to believe the severity of ESLD. The dilemma for decision-making in phase Ib is that living-donor LT might violate traditional transplantation regulations. The dilemmas for decision-making in phase Ic are: (a) anxiety and disappointment when searching for unknown information related to OLT by themselves and (b) uncertainty about the reliability of the information related to OLT. The dilemma for decision-making in phase Id was having complex psychological turmoil and difficulty in making decisions for the next step. No particular decision-making dilemma was reported in stage II. The dilemma for decision-making in stage III is not being sure about a second OLT. Seeking medical advice in phase Ia consists of: (a) being told that his/her disease can’t be treated either medically or surgically; and (b) LT is suggested by doctors. In phase Ib, seeking medical advice comprises: (a) evaluating the possibility of LT; (b) being notified that LT is not feasible; (c) living donor LT is suggested; (d) evaluating the possibility of the living donor LT ; and (e) registering on a waiting list for cadaveric LT. Medical advice sought in phase Ic is to consult with the physician, while phase Id includes: (a) physicians overseas know the patients’ condition; and (b) being notified to go aboard for LT by physicians overseas. The contents of seeking medical advice in stage II are: (a) to re-evaluate the possibility of LT overseas; (b) to deal with the symptoms; (c) the physicians abroad don’t follow the sequence of the waiting list; (d) to be notified to receive LT; (e) to arrange the post-LT caring in intensive care unit and general ward; and (f) to request help from physicians in Taiwan. The medical advice requested in stage III is being transferred to Taiwan for further post OLT care. The dilemma for seeking medical advice in phase Ia is the late suggestion for LT. The dilemmas in seeking medical advice during phase Ib are: (a) little information about LT is given by physicians in Taiwan; and (b) fewer cadaver livers available in Taiwan. The medical-advice seeking dilemma in phase Ic is unwillingness by physicians at Taiwan to supply information about OLT. No dilemma for seeking medical advice in phase Id is discovered. The dilemmas for seeking medical advice in stage II are: (a) different language used; (b) dissatisfied with the post-OLT care; and (c) the physicians at Taiwan complain about post-OLT care. The dilemmas for seeking medical advice in stage III are: (a) the vast discrepancy between the care in Taiwan and overseas; (b) the outcome of OLT is not good; and (c) the care from physicians and nurses at Taiwan is not satisfactory. The help needed in phase Ia is: (a) information from physicians and nurses; (b) consolation from religious beliefs; and (c) relatives’ support. The help needed in phase Ib is: (a) information from physicians and nurses; (b) modification of the transplantation regulations; (c) consolation from religion to promote organ donation. The help needed in phase Ic is (a) to be informed and (c) to know how to get suitable information about overseas LT. The help needed in phase Id is: (a) information about LT supplied to patients; (b) open the patients’ mind; and (c) establish good support systems. The help needed in stage II is: (a) to establish good support systems; and (b) easy approach to physicians and nurses in Taiwan. The help needed in stage III is: (a) positive altitude from physicians and nurses in caring for OLT patients; (b) a model of uniform care for OLT patients established; (c) information provided by physicians and nurses; (d) promotion of patients’ self care at home; and (e) love and caring provided to patients. Conclusions When patients are considering whether to receive OLT, they will have endless questions to be answered. It is suggested that physicians and nurses in Taiwan could give comprehensive information about LT in Taiwan and overseas, provide professional care to support and help these patients before and after OLT. Furthermore, the support from relatives and friends can help patients to make decisions and to seek medical advice smoothly.