<p><strong>Background and Objectives: </strong>Previous research has examined the effect of family physician continuity of care within end-of-life care cancer patients and its association with reduced use of acute care services. However, such research has not been examined in the end of life homecare cancer population.<strong> Objectives: </strong>To investigate the association of family physician continuity with location of death, hospital and emergency room (ER) visits in the last 2 weeks of life in end of life homecare cancer patients.<strong> Research Design: </strong>Retrospective study involving secondary data analysis of 7 linked databases<strong>. Subjects: </strong>All those who died of cancer between January 1, 2006 to December 31, 2006 in Ontario who had at least 1 visit to a family physician and enrolled in homecare for at least 2 weeks.<strong> Methods: </strong>The relationship of family physician continuity of care and location of death, and hospital and ER visits in the last 2 weeks of life was examined using logistic regression.<strong> Results: </strong>The Usual Provider of Care (UPC) measure demonstrated a dose response relationship with increasing continuity resulting in decreased odds of dying in the hospital and visiting the hospital and ER in the last 2 weeks of life. The Family Physician visits per week measure demonstrated a threshold effect relationship with location of death and hospital visits and dose response relationship with ER visits in the last 2 weeks of life. <strong>Conclusions:</strong> These results demonstrate an association between family physician continuity of care and location of death and visits to the hospital and ER in the last 2 weeks of life. This indicates the need for more involvement of family physicians in end of life cancer care.</p> / Master of Science (MSc)

<p>Introduction: Palliative care in Canada is an under-funded service for all Canadians, but for Aboriginal people in Canada, the level of access to such care is significantly lower. This study examined the system of palliative care delivery at Six Nations of the Grand River. The overall aim of the project was to identify ways on how the system of care could be improved.</p> <p>Methods: A qualitative case study approach was used. Interviews were held with Elders and family caregivers to identify the priorities in care delivery from their perspective. Focus groups were held with representatives from palliative care service provider agencies in an effort to identify the strengths and challenges within the system and to determine how palliative care services provided to the members of Six Nations could be improved.</p> <p>Findings: Themes identified in the interviews included: personable, caring care; culturally-competent care; open two-way communication; support for family caregivers; palliative home care should be available; meeting comfort needs of the person; and the need for a hospice in the community. The main theme identified in the focus groups with care providers included: relationship/rapport issues between provider organizations; within-program strengths and challenges; cultural considerations in care; and broader system factors that influence care.</p> <p>Discussion: Relationship/rapport issues were identified as a challenge, and it appeared that the focus groups provided an opportunity for communication between the organizations to improve. Identification of within-program challenges – and ways to address these challenges - may provide opportunities for each organization to improve how palliative care services are delivered at Six Nations. Identification of broader system factors that influence care may also benefit patients in need of palliative care.</p> / Master of Science (MSc)

Though there is ample evidence in existing literature demonstrating racial inequity in end-of-life care, there is minimal examination of how the culturally mainstream values of hospice contribute to inequity and reduced access for nonwhite populations. This paper reviews participatory action research, interviews and chart reviews of nonwhite populations including African Americans, Latinx, Asians and Native Americans to determine what end-of-life values these groups report and how they differ from the values of hospice and western biomedicine. All of these groups reported unmet cultural needs with respect to hospice access ranging from differing communication style preferences to different religious beliefs to different ideas about what they dying process should look like. Contributing to these barriers was practitioner ignorance about cultural variance in end-of-life preferences, demonstrated by studies of physicians to identify barriers to effectively providing end-of-life care. To help foster better knowledge and understanding between practitioners and nonwhite patients whose cultural needs are not being met, I have created a value-assessment tool to add to the standard structure of end-of-life conversations. Using this tool with patients in end-of-life conversations could improve physician confidence in understanding the needs of patients and provide patients an opportunity to freely communicate their needs and therefore increase access to the hospice services that can meet those needs. / Urban Bioethics

Death is an inevitable part of life, yet many Americans fail to plan for this final part of life. Only about 1/3 of our country has an advance directive (Off White Papers, 2014). This underutilization of advance directives is reflected in our health care spending. It is estimated that 30% of all Medicare spending occurs during the last six months of a patient’s life. The numbers are even lower when broken down into sub-categories. Only 24% of older Black Americans possess an advance directive versus 44% of their older White counterparts (Huang, Neuhaus, & Chiong, 2016). Some studies found that African Americans were more likely to “express discomfort discussing death, want aggressive care at the end of life, have spiritual beliefs which conflict with the goals of palliative care, and distrust the healthcare system” (Johnson, Kuchibhatla, & Tulsky, 2008). Other studies have even concluded that Black race is an independent predictor of lack of advance directive possession (Huang et al., 2016). This paper further explores the possibility that race and ethnicity may simply be proxies for cultural values that impact advance directive possession. We’ll discuss the barriers, for both Black patients and health care providers, to advance directive possession as well as investigate culturally mindful interventions to combat the barriers. / Urban Bioethics

Death is inevitable, and research indicates that 80% of Americans wish to die at home. Does anyone know those wishes? Advance directives outline those wishes and personal decisions. Do advance directives make a significant difference in the experience of death for the patient, loved ones, and clinicians? Through interviews with loved ones of those who have died, as well as legal representative and a physician, this thesis examines the benefits and obstacles of having an advance directive, as well as the issues that have a high impact on whether and why an advance directive is written. Policy recommendations, business tactics, and community-based solutions are proposed to address these issues. It is clear that access to healthcare and the clinical professionals who can discuss end of life issues has a major impact on whether an advance directive is considered by the patient, along with health literacy skills and knowledge. / Urban Bioethics

People with dementia account for a growing number of patients requiring end-of-life medical care each year in the United States. The clinical application of bioethical principles is rarely more important than in the context of end-of-life decision making, and determining the appropriate clinical treatment plan can be difficult and complex for clinicians, patients, and medical proxies. While the current bioethical literature offers a wealth of information on the principles underlying ethical medical practice, real-world clinical scenarios are often fraught with confusion, complexity, and conflicting understandings of best practices. There is a need for clinical decision-making tools that are both comprehensive yet simple, and broadly-applicable enough to be clinically useful. This thesis explores the cultural factors that necessitate further discussion and understanding of the issues surrounding end-of-life care for people with dementia, uses a clinical case to demonstrate a real-world approach to the ethical complexities surrounding such care, and proposes a basic ethical decision-making algorithm with the potential for broad application by students and clinicians encountering complex ethical scenarios. / Urban Bioethics

Background: Place of death is a commonly reported indicator for assessing palliative care quality, but does not provide details of healthcare service utilization at the end-of-life, such as acute care. In particular, early palliative care has shown to reduce acute care service use, but findings are mostly limited to cancer patients with few population-based data available. Objectives: The purpose of this research is to: 1) explore place of care trajectories in the last 2 weeks of life in a general population and among distinct illness cohorts, and 2) investigate whether early versus late palliative care affects acute care use and other publically-funded services in the last 2 weeks of life. Research Design: A retrospective population-based cohort study using linked administrative health data to examine all Ontario decedents between April 1st, 2010 and December 31st, 2012. Methods: Descriptive statistics were used to examine place of care trajectories and service utilization trends in the last 2 weeks of life. Multivariable logistic regression analyses were conducted to assess in the 2 weeks before death: 1) the odds of using an acute care setting (yes/no), and 2) the odds of time spent (≤1 week or >1week) in acute care settings among users. Results: Overall, 235,159 decedents were identified. About 32% had cancer, 31% had organ failure, and 29% had frailty. Overall, 29% of decedents used a hospital two weeks before death, but this increased to 61% on the day of death. Those with cancer were the largest users of palliative-acute hospital care, while those with organ failure were the largest users of acute- hospital care. Assessing palliative care timing, 27% were early palliative care recipients, 13% were late. About 45% of early recipients had a community-based palliative care initiation, 74% of late recipients had a hospital-based initiation. Late recipients were more likely to use acute care settings; this was further modified by disease: comparing late to early recipients, cancer decedents were nearly two times more likely to spend >1 week in acute care settings (OR=1.84, 95%CI:1.83-1.85), frailty decedents were three times more likely (OR=3.04, 95%CI:3.01-3.07), and organ failure decedents were four times more likely (OR=4.04, 95%CI:4.02-4.06). Conclusion: Place of care trajectories differ greatly by disease cohort. Exploring place of care trajectories can provide details not evident when reporting solely place of death. Furthermore, early palliative care was associated with reduced acute care service use in cancer and non-cancer patients. Late initiations were associated with greater acute care use, and had the largest effect on those with organ failure and frailty, suggesting potential opportunities for improvement in non- cancer populations. / Thesis / Master of Science (MSc)

Yes / Within the United Kingdom, a developing role for primary care services in cancer and palliative care has resulted in an increase in palliative home care teams. The provision of professional care in the home setting seeks to provide necessary services and enhanced choice for patients whose preference is to die at home. A mismatch between patient preference for home death and the actual number of people who died at home was identified within Bradford, the locality of this study. In response to this mismatch, and reflecting the policy environment of wishing to enhance community service provision, the four Primary Care Trusts (PCTs) in the city sought to offer support to patients who wished to remain in their own homes through the final stages of a terminal illness. To offer this support they set up a dedicated hospice at home team. This would provide services and support for patients in achieving a dignified, symptom free and peaceful death, allowing families to maximise time spent together. The aim of the study was to evaluate the Bradford hospice at home service from the perspective of carers, nurses and General Practitioners. Postal questionnaires were sent to carers (n = 289), district nurses (n = 508) and GP's (n = 444) using Bradford's hospice at home service. Resulting quantitative data was analysed using the Statical Package for Social Sciences (SPSS) and qualitative data was analysed using grounded theory techniques. The data from carers, district nurses and GPs provide general support for the Bradford hospice at home service. Carers valued highly the opportunity to 'fulfil a promise' to the individual who wished to be cared for at home. District nurses and GPs cited the positive impact of access to specialist expertise. This was a 'reassuring presence' for primary healthcare teams and offered 'relief of carer anxiety' by providing prompt, accessible and sensitive care. Carers and health professionals welcomed the increased possibility of patients being cared for at home. The study identified the need to focus on improving skill levels of staff and on ensuring continuity of care.

Yes / The initiation of end of life care in an acute stroke context should be focused on those patients and families with greatest need. This requires clinicians to synthesise information on prognosis, patterns (trajectories) of dying and patient and family preferences. Within acute stroke, prognostic models are available to identify risks of dying, but variability in dying trajectories makes it difficult for clinicians to know when to commence palliative interventions. This study aims to investigate clinicians’ use of different types of evidence in decisions to initiate end of life care within trajectories typical of the acute stroke population. Methods/design This two-phase, mixed methods study comprises investigation of dying trajectories in acute stroke (Phase 1), and the use of clinical scenarios to investigate clinical decision-making in the initiation of palliative care (Phase 2). It will be conducted in four acute stroke services in North Wales and North West England. Patient and public involvement is integral to this research, with service users involved at each stage. Discussion This study will be the first to examine whether patterns of dying reported in other diagnostic groups are transferable to acute stroke care. The strengths and limitations of the study will be considered. This research will produce comprehensive understanding of the nature of clinical decision-making around end of life care in an acute stroke context, which in turn will inform the development of interventions to further build staff knowledge, skills and confidence in this challenging aspect of acute stroke care.

No / Palliative care, since its inception over 60 years ago, has set the standard of how to care for people who are dying. Key features among these standards have been the professional development of clinical specialisms such as palliative medicine and palliative nursing; the essential addition of the multidisciplinary team to these two new specialisms that included social, spiritual and allied health workers—an outgrowth of the recognition that routine work with the dying, their carers, and the bereaved required more than solely clinical skills; and the unique partnership with communities that yielded the volunteer movement within palliative care. Professional, evidence-based symptom management and the importance of supportive care in its widest possible sense were and remain the cornerstones of the modern palliative care approach. However, the majority of people with terminal illnesses do not have access to palliative care teams, whose main focus of care remains patients with cancer. In the context outlined above this paper therefore poses two key questions: how can we provide an equitable level of care for all people irrespective of diagnosis and how can we increase the range and quality of non-medical/nursing supportive care in a context of diminishing resources? We argue that an important opportunity and solution can be found by adopting the principles of a public health approach to end-of-life care.