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.

Palliative care is founded on a holistic attitude, with the goal to alleviate suffering when a cure is no longer possible. Palliative care affirms life and regards dying as a normal process, providing possibilities of a quality time for the patient and family. Studies show that an increasing number of people choose to live the final phase of their life in their own home. A requirement for end of life care is an effective team work, where the nurse is responsible for more advanced care, and the caregiver’s provides the immediate care. The purpose of this study was to gain insight of caregiver’s experiences with patients in end of life care. An interview was conducted with seven caregivers, where the material is processed by a content analysis with qualitative approach. The results showed that the caregivers were engaged in meeting with dying patients and their families. Three themes emerged: to prioritize, to give and receive support, and to care with dignity. The following conclusions were found; Time and continuity is an essential constituent of the care for patients in palliative care. Caregivers should be given time for support and reflection. Skilled personnel with education and good knowledge of palliative care are needed in the care of palliative patients and their families.

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.

A Thesis submitted to The University of Arizona College of Medicine - Phoenix in partial fulfillment of the requirements for the Degree of Doctor of Medicine. / End‐of‐life (EOL) care and decision‐making in pediatrics is a challenging and complex aspect of patient care experienced by residents and physician attendings. Previous studies have evaluated determinants that contribute to physicians’ attitudes towards EOL care as well as preparedness of students and residents in EOL decision‐making. However, the determinants contributing to a physician’s ability to make such decisions and feel confident in addressing EOL issues are dynamic. Recognizing that decision‐making changes over time, identifying when these changes occur may demonstrate the need for educational interventions for medical students and residents early in their career to help prepare them for EOL decision‐making. A longitudinal assessment of changes in attitudes and knowledge of EOL discussions and how they impact EOL decision‐making was not previously evaluated. This preliminary study establishes a baseline for medical student, resident, and attendings for EOL decision‐making and those factors that contribute to their decisions. This preliminary data has demonstrated a difference amongst attendings compared to residents and students. Despite low probability of survival, residents and students are more likely to select more aggressive management options when compared to attendings. Data obtained after completion of future surveys will show when decision‐making changes, which factors contribute to these changes and their significance in making decisions, and when participants are comfortable addressing EOL care.

A Thesis submitted to The University of Arizona College of Medicine - Phoenix in partial fulfillment of the requirements for the Degree of Doctor of Medicine. / American Indians and American Native (AI/AN) populations have faced health disparities for a period of time. Although their incidence for some chronic diseases such as cancer, may be lower than the general population, they suffer from the poorest survival rates of any ethnic group. As the AI/AN populations age and live longer with chronic disease as seen with the rest of the general population, the discussion of palliative care is becoming more important. Currently, there is not a lot of literature about palliative care that is specific to the AI/AN population. The paucity of research serves as an impetus to learn and examine the need of available palliative care resources for the AI/AN populations. We present the analysis of twenty interviews with staff members of local hospice organizations and hospitals. The interview questions ask participants about their views and experiences in delivering palliative care. Through these discussions, we investigate the current needs, social and cultural barriers, and the infrastructure of how palliative care is accessed and delivered.

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.