The focus of this study is to explore and examine the views and feelings of United States documented and undocumented immigrants on their final resting place after death, posthumous repatriation, whether there is a need for repatriation, and if a lack of such need is preventing immigrant groups from remaining in the United States and benefiting from end-of-life services such as hospice. A quantitative research method was utilized. The use of a quantitative research method allowed for an expansive look into the use of posthumous repatriation and its effect on hospice use by immigrants. Data were obtained from multiple locations that serve and cater to specific ethnic groups within the region of the Inland Empire in Southern California. Sixty-three immigrants who identified themselves as persons born in a country outside the United States are the sample. This study produced evidence that family plays a major role in end-of-life decisions and argues the need of repatriation by immigrant groups as a potential reason for the underutilization of hospice services. The guarantee of return to their country of origin after death produced greater inclination to use hospice.

Currently in the United States, five states have enacted physician-assisted suicide as a legal end of life option for terminal patients. Research indicates that most patients who have died under this mean have been enrolled in hospice services. With the recent enactment of California’s End of Life Option Act, hospice social workers will find themselves educating and assisting patients and/or their families with this and other end of life decisions. Research has thoroughly examined physician and nurses’ involvement and attitude in the matter, but little has been researched regarding social workers. This study aimed to identify the factors that affect hospice social workers’ attitude towards physician-assisted suicide and how California’s End of Life Option Act affects their practice. In-depth face-to- face interviews with 8 hospice social workers were conducted. The study found that all 8 participants held positive attitudes towards physician-assisted suicide, support the End of Life Option Act, and feel prepared to assist patients and handle requests for the End of Life Option. Factors such as social work values and professional experience have a positive effect and validate their attitude, and factors such as religion does not affect their attitude. Due to low participation, the overall results were limited; therefore, additionally research should be extensively conducted to gain a better understanding. Regardless, a structured physician-assisted suicide protocol for social workers would benefit micro practice and macro developments.

Background: Losing an infant is difficult for parents to face. To improve EOL care for dying neonates and their families, NICU nurses need to overcome obstacles and implement supportive behaviors. Understanding the size of obstacles and supportive behaviors will better enable NICU nurses to provide quality EOL care. Objectives: To determine the largest obstacles and supportive behaviors in NICU EOL care. Methods: A descriptive quantitative study of a random national sample of 1058 NICU nurses who were members of NANN (National Association of Neonatal Nurses). The National Survey of NICU Nurses' Perceptions of End-of-Life Care questionnaire was mailed twice yielding 234 usable questionnaires for a response rate of 26%. Results: Three themes emerged in the top rated obstacles: (a) obstacles related to families, (b) obstacles regarding language and communication, and (c) obstacles concerning ethical dilemmas. The lowest rated obstacles were nurses believing that life-saving measures/treatments were prematurely discontinued and unit visiting hours being too liberal. The top eight supportive behaviors included helping families cope with the infant's death and those involving helpful physician behaviors. Lowest rated supportive behaviors were those related to the nurses' own family death experience and behaviors promoting nurse convenience. Conclusions: Obstacles and supportive behaviors for NICU EOL care have been identified. Issues regarding families, communication, and ethical dilemmas need to be addressed. Efforts should be made to more quickly align the plan of care with the projected outcome to limit both infant suffering and nurse distress from inappropriate use of life-extending measures.

As technology advances, health care decisions have become increasingly complex. American hospitals, based on accreditation standards, are required to have a system and process to address ethics, patient rights, and responsibilities. These practices vary widely, and there is very little consistency and few standards across the country. Key court cases have provided minor structure, and the federal government has been silent in the formulation of these structures but not necessarily in this arena. Most often, these accreditation standards related to clinical ethics are managed by Healthcare Ethics Committees (HEC). Bioethics has become a growing field, the level of integration between this discipline and healthcare practice varies widely. Using qualitative methods based on Grounded Theory, this analysis presents six key thematic findings, as well as interpretations to identify current challenges and opportunities to make recommendations for improvement by enhancing clarity and reducing ambiguity.

Alzheimer’s disease (AD), a chronic terminal disease, progressively impairs cognitive function resulting in deterioration of intellect, memory, and personality. With disease progression, the surrogate decision-maker becomes more involved in intervention choices and end-of-life (EOL) care, which may or may not be based on patients’ wishes or best practice guidelines. Yet surrogate decision outcomes involve important issues of medical futility, quality of life and death. The purpose of this study was to examine factors that influence surrogate health care decision-making for a family member during the terminal stage of AD. A descriptive, predictive design was used to address the research questions: 1.What is the relationship between surrogate gender and decision motives?; 2. Do structure (surrogate age and gender, attachment, interpersonal conflict), interactional context (elder image, caregiving beliefs), situational context (dementia level), and perception (burden) variables predict the type of decision motive (reward seeking, altruistic, distress reduction, punishment avoidance) used by surrogates’ when making healthcare decisions for their family member with AD?; 3. What healthcare decision choices do surrogate decision-makers make for a family member with AD? A convenience sample of 58 women (67.2%) and men surrogates between the ages of 43 to 84 years of age (M = 62.22, SD = 9.67) living in one urban and several rural cities in a southeastern state were recruited. Participants were recruited during facility meetings for families at 15 long-term care facilities and 1 dementia care assisted living facility. The majority of participants were Caucasian (84.5%). Questionnaires were distributed to participants at a facility meeting. After the study was explained, written informed consent was obtained. Each participant was asked to complete the questionnaire booklet and return via mail in a stamped self-addressed envelope to the researcher. Data were analyzed with descriptive and inferential statistics including frequencies, percentages, means, standard deviations, t-tests, and multiple linear regressions. Types of decision motives did not differ by gender. For the regression models, the independent variables included gender, feelings of attachment, interpersonal conflict with the elder, beliefs about caregiving, dementia level and caregiver burden. For the model predicting punishment avoidance decision motive, simultaneous multiple linear regression results indicated that the overall model significantly predicted the dependent variable. The regression model predicting reward seeking decision motive results indicated that the overall model significantly predicted the dependent variable. Two of the variables, dementia level and surrogate burden, significantly contributed to the variance in the reward seeking decision motive. When asked about the decisions they have been asked to make in the past 12 months, surrogates were asked to make life supportive interventions (pain management and nutritional supplements) more frequently than life extending interventions. The most frequent life extending interventions chosen in descending order of frequency include surgery, central line placement, and feeding tube placement. This study supports the importance of providing surrogate and family information on AD and end-of-life healthcare interventions in a therapeutic and supportive environment. Nursing implications address pain management of the cognitively impaired patient, advocacy for advance directive completion and non-futile care, and patient and family AD education. Health care implications include process for completion of an advance directive and the burden of medical futility.

Americans often face end-of-life with ineffective pain/symptom control. While hospice care prevents suffering for the terminally ill, only around 40% of individuals access services. Although few studies describe differences in terms of cancer vs. non- cancer diagnoses, hospice utilization/access disparities appear to exist. Analyzing 14 sociodemographic and clinical variables for 3,905 hospice discharge cases, this study highlights observed disproportions between cancer and non-cancer groups, identifying significant relationships amongst patient characteristics and hospice diagnosis. Factors found significantly related to diagnosis include components of the following: age, primary payment source, mortality status at discharge, hospice initiation location, length of stay, physical function, cognitive function, and presence of pain symptoms. Results confirm low overall hospice utilization rates, while validating diagnosis-specific differences driven by individual and population-based characteristics. In order to increase utilization/access rates and eliminate current disparities, patients presenting with certain terminal diseases may require greater provider flexibility in terms of hospice eligibility requirements.

Pediatric cancer imposes a threat on the child’s life and approximately every fifth child diagnosed with cancer will die due to his or her disease. The overall aim of this thesis was to explore palliative care of children with cancer and bereaved family members. The thesis includes data collected retrospectively from medical records, a nationwide questionnaire directed to bereaved parents, a nationwide questionnaire for bereaved siblings and individual interviews with children in cancer care. Most children dying from cancer were recognized as being beyond cure at time of death; for some this recognition occurred close to death, leaving little time for potential personal preferences (Paper I). Bereaved parents and siblings noticed extensive suffering in the child close to death (Paper II, VI), with physical fatigue being the most commonly reported symptom irrespectively of age and diagnosis of the child (Paper II). Bereaved parents’ psychological well-being appears to be closely related to experiencing suffering in the dying child (Paper III) but also to high-intensity treatment (with bone marrow transplant as the example) of a child that still dies from his or her disease (Paper IV). Bereaved siblings experience a lack in information at the end of their brother’s or sister’s life and report feeling poorly prepared for the loss. An increased risk of anxiety was seen in siblings whom nobody talked to about what to expect at the time of death of their brother or sister (Paper VI). When caring for children with cancer it is vital to take the individual child’s awareness and preferences regarding information into consideration. Bereaved parents who have communicated with their child about death expressed that this often occurred at the child’s own initiative (Paper V) and simple means such as fairy tales could be used to facilitate communication. Ill children themselves expressed in interviews wanting honest, but still hopeful information regarding bad news (Paper VII). The results of this thesis stress the importance of striving to achieve good communication and keeping a family perspective throughout care of children with cancer.

Quality end-of-life care in the adult critical care remains a high priority for numerous professional agencies and organizations due to advanced technologies that sustain or extent life, regardless of life quality. The purpose of this study was to describe how family members of patients in adult critical care attain awareness that their loved one is dying or near death in the adult critical care setting. Two research questions were addressed: 1) What is the human-environment health process of knowing that end-of-life is imminent by family members of patients in the adult critical care area?, and 2) What factors influence the human-environment health process of knowing that end-of-life is imminent by family members in the adult critical care area? A Glaserian grounded theory design was utilized to conduct this retrospective study. Both primary (interviews) and secondary (poem, nursing art, song, media and film) data sources supported the emerging theory. The Process of Death Imminence Awareness by Family Members of Patients in Adult Critical Care contained six phases: Patient's Near Death Awareness, Dying Right in Front of Me, Turning Points in the Patient's Condition, No Longer the Person I Once Knew, Doing Right by Them, and Time to Let Go. Influencing factors associated with this process were discussed as process facilitators and hindrances. Supportive nursing behaviors and actions as well as family member's emotional, behavioral, and physical reactions to having a critically ill family member were also discussed. This substantive theory will guide nursing education, practice, and research in the creation of nursing interventions, instrumentation, protocols, and policies and procedures aimed at providing cost effective quality end-of-life care in this specialized area of care.

This thesis aims to make feminist theory an integral part of hospital ethics committee ("HEC") decisionmaking. Specifically, the feminist theories discussed in this thesis prioritize an awareness of social context. The small-scale study conducted for this thesis found that HECs already consider social context to some extent but that they may also be open to more systematic integration. As opposed to courts, HECs provide a space where innovative alternatives (e.g., feminist approaches) to principalist bioethical decisionmaking can be tested. In order to encourage the development of such alternatives, this thesis has proposed a framework for the relationship between courts and HECs so that patients can benefit from the strengths of both entities in ways that have not been possible in the past.

Introduction: Despite the public and policy attention on ensuring access to health care for all Canadians, research continues to identify inequities in access to cancer care services. The objectives of this thesis are to define inequity in access to colorectal cancer (CRC), as well as to measure inequity in access to radiotherapy and end-of-life care. Methods: This study examined income-, geography-, sex-, and age-related inequity in access to CRC services along the continuum of care, using the Horizontal Inequity Index. Specifically, we measured and compared inequity in access CRC services in Nova Scotia using linked administrative databases. Results: We have identified that age- and geography-related inequity in access to radiotherapy and end-of-life care are the most consistent for CRC patients in Nova Scotia. Discussion: The clear distinction between inequity and inequality in this study provides indication to policy makers that the variations in access, may be of social concern.