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Advance care planning for adults is a process of consideration, discussion and decisions about care at the end of life. There is evidence that advance care planning improves outcomes such as the achievement of preferred place of death and the quality of dying. However, the uptake of advance care planning is variable. There are calls for more research to understand what influences people to carry it out to plan services and improve the quality of life of patients and their families. This dissertation reports on a qualitative, video interview study of 15 adult hospice patients. The study was interpretative influenced by the narrative approach with data driven thematic analysis and a video aide memoir. Coding was carried out using the Computer Assisted Qualitative Data Software programme Transana. The rigour and credibility of the study was viewed through the lens of trustworthiness which included the development of a Continuous Conversation Framework. The aim of the study was to investigate what would influence hospice patients to discuss their advance care planning to develop future education programmes based upon the perspectives of people at the end of their life: 1. What influences hospice patients in their advance care planning? 2. What communication skills do hospice patients find helpful when clinicians discuss advance care planning? Three findings are reported. These suggest that the influences on advance care planning activity and conversations is the less reported relationship of the personal context of a person's life (as well as services, diagnosis and prognosis considerations). First, the findings highlight the relevance of how people with an incurable illness live with and talk about their dying within the individual context of their daily lives. Secondly, differences are illustrated between how people prepare (for themselves) and plan (for others) in their dying. Thirdly, clinician communication behaviours such as empathy (through mutual connection and visible behaviours), tailored conversations (through accessible and selective honesty) and the design and use of space empower people to carry out conversations which support them as they live with, prepare and plan for dying. The three findings contribute to the perspective which supports the complexity of advance care planning that should focus on the context of person's life as well as the paperwork, prognosis or diagnosis. A contribution to person-centred care is suggested through a model of relational advance care planning.

Older adults with dementia are at increased risk of becoming incapable of making their own decisions and may therefore benefit from planning for care at the end-of-life. Advance care planning (ACP) is a complex, multifaceted process by which people can express their wishes about care at the end-of-life in case they become incompetent to make decisions for themselves. However, we have little understanding of the ACP process among people with dementia and their families. This study addressed three questions: 1) when and how to cognitively impaired older adults and their families receive information about ACP; 2) in which aspects of the ACP process do families of cognitively impaired older adults engage, and why (and does this fit within the framework of the transtheoretical model of behaviour change [TTM]); and 3) how ACP relates to the way in which family members perceive the quality of death of their loved one. 22 family members of deceased older adults with dementia were interviewed and data was analyzed using interpretive description qualitative methods. Participants reported that information about ACP is provided in a haphazard and often incomplete manner, leading to difficulty engaging in the ACP process. Older adults were in various stages of readiness to engage in ACP behaviours, with most only engaging in a subset of ACP behaviours. Although ACP was viewed as beneficial by participants, several barriers were identified that prevented people with dementia from dying in a way that was aligned with previously-expressed wishes. Implications for the practice of clinical neuropsychology and implications for policy on ACP are discussed. / Graduate

Advance care planning (ACP) is a process of discussing the patient’s wishes and preferences for future health care. ACP allows for the patient to retain their autonomy and involves informing the patient about their illness, prognosis, and their health care options. Despite the known advantages of completion of ACP forms, ACP discussions are minimal during primary care visits. The purpose of this DNP project was to identify primary care providers (PCP) beliefs and attitudes regarding barriers to addressing ACP with patients with a chronic illness in the primary care setting at one family practice clinic in Tucson, Arizona, and to determine if providing educational information will increase the PCPs intent to address ACP within clinical practice. A pre-survey, educational handout, and post-survey containing Likert-type scale questions and one ranking format question was created and sent via email to potential participants within the family practice clinic. The pre-survey requested demographic characteristics, and both the pre and post surveys assessed the PCPs beliefs and attitudes towards barriers to addressing ACP. 42 potential PCPs were asked to participate in the online surveys, eight (19%) completed the pre-survey, and four (9.5%) completed the post-survey. The data obtain from the surveys indicate lack of time, discomfort with the subject, and communication barriers as the most frequently reported perceived barriers to addressing ACP in the primary care setting. The results from this project can be used to understand PCPs beliefs and attitudes towards addressing ACP in the primary care setting and how this can affect future care of the patient when a serious illness occurs.

Indiana University-Purdue University Indianapolis (IUPUI) / Heart failure is a terminal disease with an unpredictable trajectory. Family members of patients with heart failure are often called upon to make decisions about treatment and end of life care, sometimes with little guidance as to the patients’ wishes. Advance care planning (ACP) is an ongoing process by which patients make decisions about their future healthcare. Only about one-third of patients with heart failure have participated in ACP, which is a similar percentage to the overall population. Despite increased focus on ACP and interventions to improve it, the rates of ACP in the population remain relatively unchanged. There is a need to develop interventions that are targeted based on patient engagement in the process rather than the existing broad-based interventions. The purpose of this dissertation study is to examine the relationship between the American Heart Association stage of heart failure and readiness to engage in advance care planning. The study consisted of mailed surveys that consisted of demographic questionnaires and the Advance Care Planning Engagement Survey. Engagement was analyzed in relation to heart failure stage, heart failure class, comorbidities, perception of health status, recent hospitalizations, making healthcare decisions for others, and demographic variables. The results demonstrated that although there was no significant association between heart failure stage or class and engagement in advance care planning, there were significant associations between medical comorbidities and advance care planning engagement. Other significantly associated participant characteristics included age, gender, education, ethnicity, and income. Findings suggest that people with multiple comorbid conditions will be more likely to be ready to engage in ACP than those with fewer health conditions. The results from this study will contribute to the development of strategies to improve advance care planning that are targeted based on engagement level.

The Palliative and Therapeutic Harmonization (PATH) program was designed to help frail older adults and their family members prepare for and make medical decisions, in the context of frailty and dementia. This sandwich thesis includes three manuscripts that present the findings from a mixed methods study exploring the implementation and outcomes of the PATH program, in three long-term care (LTC) home settings. The purpose of the first sub study was to describe both the perceived need for the PATH program, and initial reactions following its training and implementation. Quantitative surveys and qualitative interviews with bereaved family members showed that prior to implementation, they were mostly satisfied with their relatives’ end-of-life care. Through qualitative interviews, clinical leaders shared a positive impression of the training and PATH principles. They also explained how the PATH program could help them improve palliative and end-of-life care planning and communication with residents and families. In the second sub study, qualitative interviews were conducted with family members to learn about their experiences with and perceived outcomes from the PATH program. All family members had a positive experience. They shared perceived outcomes such as, opportunities to share and learn about their relative’s health status and trajectory, creating a mutual understanding of directions for care, and receiving support and reassurance for health care decision making. Finally, the purpose of the third sub study was to describe both the perceived outcomes of the staff who implemented the PATH program, and differences in documenting residents’ advance care plans and discussions. Staff described both personal and practice related outcomes. In addition, documentation around advance care planning changed with the program’s implementation. Overall, the PATH program offered frail older adults, their family members and their professional caregivers an opportunity to communicate about and prepare to make decisions for palliative and end-of-life care. / Dissertation / Doctor of Philosophy (PhD)

Patients with life-limiting cancer and their families face unique challenges that interfere with their ability to make decisions or adequately express their health care preferences about end of life (EOL) treatment. As a result, patients at EOL often receive aggressive unwanted treatment that nationally costs billions of dollars and results in surrogate distress about not honoring patient wishes. Respecting Choices® DS-ACP is a disease-specific Advance Care Planning (ACP) intervention that is designed to overcome barriers associated with ACP and potentially decrease the incidence of unwanted, overly aggressive treatments at EOL. The intervention is delivered to patient-surrogate dyads by a trained facilitator who provides an opportunity for patients to identify values and goals that support their EOL choices and communicate these values and goals to their surrogates before they are in a medical crisis. Although Respecting Choices® DS-ACP has been effective with other populations, it has not been evaluated for patients with life-limiting cancer. Thus, the purpose of this study was to evaluate the Respecting Choices® DS-ACP intervention with patients with life-limiting cancer to determine if the intervention increases patient-surrogate congruence about the patient's EOL wishes and reduces decisional conflict without causing anxiety. Study design was a Phase I clinical trial. A volunteer sample of 15 patients with a diagnosis of life limiting cancer and their matched surrogates participated in the study. The Statement of Treatment Preferences for Life-Limiting Cancer Form, the Spielberger Stateanxiety Scale Form Y-1 (STAI) and the Decisional Conflict Scale (DCS) were administered preand post-intervention. The Quality of Communication about End of Life Care Form was administered at post test. Descriptive statistics were used to describe the sample. McNemar Chisquare and Binomial tests were conducted to investigate whether the intervention increased iv congruence for five different situations on the Statement of Treatment Preferences for LifeLimiting Cancer Form. The Zar’s Multiple Comparison Test of Differences was conducted to investigate the proportion of congruence observed across the five situations. A paired-sample t test was conducted to evaluate post-intervention changes in anxiety (STAI) and decisional conflict (DCS). Frequencies and percentages were conducted for the five items on the Quality of Communication about End of Life Care Form to evaluate patients' and surrogates' satisfaction with the intervention. Anecdotal comments about timing were content analyzed and summarized. Congruence between patients and surrogates improved significantly in all five situations (range of p =.001 to .031), decisional conflict lessened significantly (t (14) =4.49, p < .001), and anxiety did not change (t (14) = 1.75, p = .102) pre- and post-intervention. Participants reported satisfaction with the intervention, including its delivery and timing. Findings from this study provide guidance on how to assist patients with life limiting cancer and their surrogates with EOL decision making. Study findings also support making the Respecting Choices ACP intervention part of usual care for patients with life limiting cancer and timing the intervention so that it is delivered before a medical crisis occurs. The lack of change in post-intervention anxiety scores suggests that ACP does not add to patient distress when ACP is conducted by a trained facilitator. This finding can be used to persuade health professionals to refer their patients for ACP. Additional research is needed to determine if increased patientsurrogate congruence leads to patients' wishes being followed and reduces surrogate decisional conflict and distress at EOL. Future research is also needed to determine if the Respecting Choices DS-ACP intervention is equally effective with racial and ethnic groups whose reluctance v to engage in EOL discussion has been documented in the literature or if the intervention needs to be culturally adapted.

Canadians are living longer with multiple complex illnesses. In turn, older adults are often in need of complex medical attention in crisis situations in acute care hospital settings. Although acute care settings are equipped with a growing variety of life saving technologies, hospitals are still the setting in which most people die. Yet, almost half of the Canadians who have been admitted to acute care centres with chronic life-limiting illnesses have not had advance care planning (ACP) conversations with their substitute decision-maker (SDM) about the personal values that bring quality to their lives. In fact, only 8% of the general Canadian population are ACP ready. Consequently, many SDMs are unprepared to make end of life (EOL) treatment decisions for their loved ones. One way to promote patient-centred care and ease the burden of in-the-moment EOL treatment decisions made by SDMs, is for nurses to engage their patients in ACP. However, very few registered nurses regularly engage their patients in ACP. The purpose of this research is to better understand the organizational factors influencing nurses’ decisions related to ACP in their hospital-based work. This ethnographic study was conducted on three acute care wards in two hospital sites located in Northern Ontario. Data collection methods included observational fieldwork, semi-structured interviews with administrators and registered nurses (n=23), and the collection of documents pertinent to the study purpose (i.e., accreditation reports, practice guidelines, etc.). Findings reveal that the work of nurses in hospital settings is embedded within a context that prioritizes patient flow, and efficiency. Consequently, hospitals often function at overcapacity, and nurses have extremely heavy workloads caring for complex patients with diagnoses that do not match the medical specialty of the units. Although participants state that they value ACP, they maintain that nurses have very little capacity to engage patients in these conversations in their practice. Findings support that expectations for hospital nurses to fully engage in ACP with their patients may be unrealistic given the context within which they work. Alternative models for considering ACP in acute care could be explored to ensure that patients with life-limiting conditions receive care that is best matched to their needs, values, and wishes. / Graduate

The overall aim of the present thesis was to study factors related to transfers of older people between nursing homes, emergency department and hospital care. The thesis was based on four studies and used three methods: focus group discussions, structured review of electronic healthcare records, semi-structured interviews with registered nurses and general practitioners. Study I: nursing home nurses found it difficult to decide whether older residents should be referred to hospital from the nursing home. Hospital registered nurses reported often trying to stop premature discharges or having to carry out the discharge although it had not been fully prepared. Study II: transfer rate to ED was 594 over 9 months among a total of 431 residents (M 1.37 each). 25% were caused by falls and/or injuries, 63% resulted in hospitalization (M 7.12 days). The transfer rate was 0.00-1.03 transfers/bed; it was higher for private for-profit providers than for public/private non-profit providers. Study III: nursing homes with high transfer rates had fewer updated advance care plans than did nursing homes with lower transfer rates. More nurses from nursing homes with low transfer rates had a specialist education and training in dementia care and had worked longer in eldercare. Study IV: general practitioners perceived registered nurses’ continuity, competence and collaboration with family members as important to quality of care in nursing homes; inadequate staffing, lack of medical equipment and less-than-optimal IT systems for electronic healthcare records are impediments to patient safety. The findings indicate that organizational factors could explain differences in transfer rates between nursing homes. The studies highlight the importance of advance care planning together with residents and family members in facilitating future medical decisions. Registered nurses’ continuity and competence are perceived as crucial to quality of care. To meet increasing demands for more complex medical treatment at nursing homes and to provide high-quality palliative care several changes should be made: Nursing homes should be equipped with suitable medical equipment and registered nurse staff should be matched accordingly; importantly, registered nurses and general practitioners should be able to access each other’s healthcare record systems.

Thesis advisor: Megumi Inoue / End-of-life care planning is an opportunity for people to express how they want to spend the final stage of their lives by directing what type of medical treatment they wish or do not wish to receive. The completion of such planning is a way to exercise their autonomy, which is one of the fundamental ethical principles in medicine in the United States. Many older adults in the U.S., however, do not have such a plan or even discuss the topic with anyone. In order to understand the circumstances in which end-of-life planning is enacted, this study investigated two important research questions: (1) What are the sociodemographic and psychosocial factors that enhance or impede the completion of end-of-life planning? (2) How consistent is the content of a living will with the person's actual dying experience? These research questions were developed and examined as an application of expectancy theory, which explains the concepts of motivation and action. A series of logistic regression analyses were conducted. This study analyzed data from the Health and Retirement Study (HRS), which is a nationally representative sample of Americans over the age of 50. The analytic subsample included those who died between 2000 and 2010 (N = 6,668). The study found that persons who were older, who identified themselves as White, who had higher levels of income and education, and who were widowed or separated were more likely to be motivated to complete end-of-life planning. A higher level of sense of mastery was specifically relevant to documentation of living wills. On the other hand, a lower level of religiosity was specifically associated with having a durable power of attorney for health care. In addition, there was a clear connection between a request for palliative care and less troubling pain. Implications include conducting a community- or workplace-based public educational campaign, incorporating a culturally tailored approach for racial/ethnic minorities (e.g. faith-based interventions), using advance directives written in easy to understand language (e.g. Five Wishes), and funding Medicare provision for end-of-life care consultations between doctors and patients during annual physical exams. / Thesis (PhD) — Boston College, 2014. / Submitted to: Boston College. Graduate School of Social Work. / Discipline: Social Work.