Background: Long-term care nurses are in a pivotal position to be augmenting the quality of life for residents and improving the death and dying experience for residents, their family members and surrogate decision makers. Currently there is a paucity of literature that acknowledges the experiences of long-term care nurses and their involvement with end-of-life decision making and care. Purpose: To describe long-term care nurses’ perceptions of factors that influence their communication with end-of-life surrogate decision makers and the kind of support they need to support this discussion. Method: A descriptive study using mixed-methods convergent design was used to obtain responses from a sample of 30 long-term care nurses. An online survey included questions to obtain quantitative data and open-ended questions for short responses. Results from both sets of data were brought together and compared during the analysis phase. Results: The findings of this study highlight the personal factors of the nurse, the characteristics of the surrogate decision maker, contextual factors, situational related inputs, and the support desired by long-term care nurses. Participants rated factors according to importance in their experiences of communicating with surrogate decision makers. Seven themes were inductively derived from the analysis: 1) selected or appointed as surrogate makes a difference, 2) strong trusting bond between nurse-resident and nurse-family, 3) being too close to see resident’s wishes, 4) interdisciplinary team agreement, 5) living will as a communication roadmap, 6) peaceful environment, and 7) the need to create emotional distance. Long-term care nurses also identified the types of support they seek or need to be effective in communicating with end-of-life care surrogate decision makers. Conclusion: As the numbers of the older population continue to increase, the demand for nurses to develop expertise in caring for dying residents and communicating with them, their family members, and surrogate decision makers will increase. Understanding their experiences and providing support to long-term care nurses may strengthen their capacity to communicate about death and dying and their delivery of quality end-of-life care to residents.

Thesis advisor: Pamela J. Grace / Significance/Background: Surrogate decision-makers (SDMs) take part in 1.5 million end-of-life (EOL) decisions per year. Most find the role burdensome, often do not make decisions concordant with patients' wishes, and many suffer negative psychological aftereffects. Specific Aims: 1) Identify and describe the psychological processes of recent SDMs for adults at EOL in the intensive care unit (ICU) and 2) develop a theoretical model of SDMs' psychological processes. Methods/Analysis: Descriptive, multiple case study research design using a cognitive task analysis (CTA) interviewing approach. Participants completed an in-depth semi-structured CTA interview and a demographic form. Verbatim transcribed interviews were encoded and analyzed until theoretical saturation was met. Results: Nineteen SDMs (female=11) with a mean age of 59 years (± 11) who made decisions for patients (mean age, 67±13 years) who died in the ICU completed interviews. Data analysis yielded 27 psychological processes representing the hypothesized theoretical links amongst 20 individual psychological concepts. The PREDICAMENTS model (Psychology, Reasoning, and Ethics Demonstrated In Choices about the Acceptability of Medical Treatments and Patient Conditions Encountered in Life Threatening Situations) of surrogate decision-making was assembled from these psychological processes and concepts. The model depicts a complex web of psychological processes wherein SDMs ultimately express acceptance or rejection of medical treatments and/or the patient's physical condition based on their perception of the acceptability (or lack thereof) of medical treatments and/or the patient's physical condition. Conclusions: The PREDICAMENTS model offers an initial picture of the underlying psychological processes operating in SDMs decision-making. Implications for Practice and Research: The PREDICAMENTS model can be used to assess and understand SDMs' thought processes, emotions, and ethical concerns. Further research is needed to test and corroborate constructs and linkages in this model with the aim of developing decision support interventions. Ethicists need to discuss the implications of this descriptive theoretical model for the normative ethical standards expected of SDMs. / Thesis (PhD) — Boston College, 2013. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

No description available.

Indiana University-Purdue University Indianapolis (IUPUI) / Background: When a patient is incapacitated and unable to make health care decisions, a surrogate decision maker must be designated to make decisions about the patient’s care in his or her place. Studies show that fewer than 20% of patients in hospitals present with a designated health care representative form. Therefore, the overwhelming majority of surrogates in hospitals are identified via default state statutes. Little is known about the implications of state default surrogate decision making statutes on physicians and patient care in clinical practice. Methods: An evaluation of state surrogate decision making statutes was conducted in order to determine variability among state laws. Additionally, a statewide, quantitative, descriptive, cross-sectional survey of a random sample of 405 physicians working in Indiana hospitals was conducted to determine: 1) physicians’ knowledge of Indiana’s surrogate decision making law; 2) physicians’ approaches to hypothetical cases they might encounter in hospital practice; and 3) any delay in patient care physicians experience as a result of state surrogate decision making laws. Results: There is very little consistency among states regarding who may serve as a surrogate decision maker. In Indiana, less than half of the surveyed physicians (47.90%) were able to correctly identify legally allowable surrogates. When presented with clinica vignettes, nearly all physicians (84.90%) report that they would allow a grandchild to act as a surrogate decision maker, even though grandchildren are not legal surrogates under the law. Additionally, more than half of physicians (53.8%) experienced a delay in patient care due to the inability to identify a legal surrogate. Conclusions: The narrow construction of state laws can leave patients in situations where they either have no qualified surrogate under the law or where they have multiple surrogates. If there are multiple surrogates with competing interests a consensus may not be reached on the patient’s medical care. These situations result in a delay of patient care. The results of this study show that the Indiana Surrogate Decision Making law is flawed as it does not reflect the composition of Indiana families and leads to delays in patient care.

因為醫病互動關係的改變，病患自主權在經過歐美數十年來的覺醒與詮釋，並定位於不論是人性尊嚴或是隱私權內涵中之憲法層級，以及在告知後同意於近二十年來引進國內並蓬勃發展之後，病患的自主決定權在現今醫療過程中已經受到相當的重視。青少年也因接近成人的年齡及成熟度，在法律及臨床實務上也逐漸肯認其對於自身的醫療決定擁有自主決定權。然而，兒童不論在法律或是社會觀念之中，均被認定為能力尚未成熟，傳統上認為必須由父母代替其做醫療決定。可是在作者身為一位臨床兒科醫師的臨床實務經驗當中，許多病童往往能表達自己對於醫療決定甚至是臨終決定的自主意見，卻不受到父母或其他成年代理人的採納。 因此，本文將從臨床經驗出發，將所發現許多兒童有能力決定、以及父母無法做出符合兒童利益決定的案例，提出作為本文探討的思考起源。本文主要鎖定未成年人中未滿12歲的兒童進行討論，排除許多文獻早已熱烈討論的青少年人；另外因為立法例上並未賦予未成年人擁有「自主權」，故本文暫不深究兒童法律上的自主權利，而是以探討兒童實質上的「自主性」作為探討的主軸，並以此為未來法律發展的基礎。 本文將首先從「醫病關係的演進」開始，探討一般性「病患自主決定權」之倫理與法律。醫學倫理上涉及包括「生物醫學倫理四原則」以及「告知後同意」；多數國家也將「自主決定權」在法律上定位為憲法層級之人權保障。聯合國兒童權利公約則為現今國際上兒童人權維護的重要指引，也是對於兒童一般自主權正當性的重要依據。至於兒童的自主決定與其決定能力相關，也涉及父母代理決定的討論，故從法律上對於父母子女關係及未成年人保護的討論出發，探討代理決定時的最佳利益判斷，思考兒童醫療決定的問題及衝突，以及在不同年齡適合該年齡得以決定的事項。 在兒童醫療決定上，難題包括為何要重視兒童自主、何人有權決定、如何決定等等，在此議題受到各國重視並不斷發展之下應如何運作。在本文中主要參考了美國以及英國的發展經驗以及建議，提出對於臨床操作的看法。本文認為，可以用兒童醫療「表意權」的行使作為對兒童自主性的肯認，從兒童決定能力的判斷開始，對於具有決定能力的兒童表達其合理意見應充分尊重；若是缺乏決定能力的兒童，則在考量其最佳利益後由父母代理其做出醫療決定。醫療人員基於必須對於病童負責的角色及責任，亦應檢視父母決定是否合理，適時地介入決定以維護兒童最佳利益。 至於在兒童的最佳利益的判斷上，除了要考慮所面對的病況以外，還需要針對兒童未來生理發育和心智發展的影響，整體考量其未來的生活品質；對於臨終的兒童，則應考量是否得到有尊嚴的死亡，此與成年人的思考並無相左。最後，本文將進一步探討較為特殊的臨床狀況，包括面對重症以及急症的病童應如何操作及思考，並重新檢視本文所提出之實際臨床困難案例，建議較為適合的做法，以作為更多臨床個案判斷的參考指引。 / Patients' awareness of self-determination has raised and their rights have been taken into account in clinical consideration because of the change of doctor-patient relationship in recent decades. The right to autonomy was highly positioned at the constitutional level no matter it is contained in the concept of human dignity or the right of privacy. It is also highly valued after “the doctrine of informed consent” was introduced into our country with vigorous development in recent years. Because adolescents’ age and maturity approach adults, they have been recognized to have sufficient ability and right to make their own medical decisions as well as adults. Children, in the general idea of the society, are concerned not to have sufficient decision making ability and therefore need their parents’ help to make their own medical decisions. However, from clinical experiences, many children could not only express their autonomous opinions but even have the ability to consent to their medical treatments, including life-saving treatments. Unfortunately, children’s opinions were usually ignored, and sometimes their parents could not make decisions in their best interest. This study will discuss the patient autonomy of children whose ages are under 12 years old. We acknowledge that children do not have legal “right” to autonomy but they still have their own autonomous expression. The ethical and legal bases of patient autonomy are firstly illustrated, including “the four principles approach to bioethics”, “the doctrine of informed consent”, the legal status of “the right to autonomy” at the constitutional level, and the United Nations Convention on the Rights of the Child which is an international guide to children’s human right. Children’s autonomy is closely related to their decision-making capacity or competence and their age. Furthermore, surrogate decision making plays an important role in children’s affairs. When there is a conflict between the parents and children, the principle of best interest of children should be the leading concern. Regarding the medical decision of children, difficult problems are: why children’s patient autonomy is vital, who has the right to decide, and how to make a decision. I have reviewed the experiences and suggestions from concept leading countries such as the United States and the United Kingdom. I proposed my own viewpoint and suggest some guidelines on the clinical decision process. My opinion is that children’s right to express should be taken as the confirmation of children’s autonomy. For the children with decision making capacity, we should fully respect his rational decision; for the children without it, parents could make the decisions according to the children’s best interest. Medical staffs, including doctors and nurses, also need to reexamine the parents’ decisions suitable for children’s best interest. At the end of the thesis, I re-examine the clinical cases proposed at the beginning of this thesis, to present my resolution to the cases as guides for future clinical situation.