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The purposes of this study were to evaluate the frequency of documented prognosis discussions among terminally ill cancer patients, to identify correlates of having documented prognosis discussions, and to describe the content of prognosis discussions as documented in patient medical records. Sample data were collected from the randomly selected medical records of inpatients (n=210) aged 65 years or older and admitted with diagnoses of brain, pancreas, liver, gall bladder, or inoperable lung cancer from six large Connecticut hospitals. A standardized instrument was used to extract data concerning patient demographics, hospital course, prognosis discussions, and evidence of advance care planning. Prognosis discussions were recorded in 79 (38%) of medical records and were correlated with emergency admission status (p=0.004) and longer length of hospital stay (p=0.003) on multivariate analysis. Of the documented prognosis discussions, 63% were within one week of admission but after the first day, and 57% included the patient, 76% included the family, 77 % included the doctor, and 69% did not include another health staff member (n=79). Life sustaining treatment discussions and DNR orders were both associated with prognosis discussions (p=0.001 and p=0.001, respectively) and were more often documented after the prognosis discussions. Prognosis discussions included planning for care and treatment in 33 (42%) of discussions documented. In conclusion, we found that prognosis discussions were infrequently documented during the hospitalization of terminally ill patients diagnosed with cancer. We also found that advance care planning, such as discussions of life sustaining treatment and DNR orders, was significantly associated with prognosis discussions and more often occurred after prognosis was discussed.

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Guided by an explanatory matrix of family conflict at the end-of-life, the goals of this mixed methods study were to further generate theory regarding family conflict and to provide insights into its correlates and predictors. Sources of data analyzed include quantitative survey responses from 161 hospice family caregivers, 15 in-depth interviews with hospice family caregivers, and 10 interdisciplinary focus groups with hospice professionals. An explanatory matrix is presented that portrays family conflict at the end-of-life as a complex phenomenon influenced by salient contextual variables, conditions, and factors that may contribute to a number of negative outcomes for patients, family members, and professionals. The matrix also provides a beginning understanding of approaches utilized by hospice professionals in their work with families experiencing conflict. Significant bivariate correlations were found between family conflict and family context variables (i.e. prior conflict, length of caregiving, caregiver gender, caregiver age, presence of children in the caregiver’s home, advance planning discussions within family), conditions (i.e. family coming out of the woodwork and patient care needs) and contributing factors (i.e. communication constraints and family asserting control). In the multivariate model, significant predictors of family conflict included prior conflict, caregiver gender, caregiver age, advance planning discussions within family, family coming out of the woodwork, communication constraints, and family asserting control; the model explained 60% of the variance in family conflict. Implications for routine assessment, further examination of interventions to prevent and address conflict, and future research are highlighted. / text

Background: Multiple factors influence end of life care and can lead to barriers in the experience of care for patients and the delivery of care for physicians. It is vital to determine the possible challenges physicians may face in providing end of life care in order to understand and decrease these challenges. Objective: The purpose of this study was to identify and understand the different challenges physicians face in the provision of quality end of life care. Methods: First, a scoping review was conducted on five databases to gather knowledge on the current literature on physician-perceived challenges in end of life care. Subsequently, a secondary data analysis was performed from the results of a pan-Canadian study with 1 060 respondents on medical end of life practices to: (1) measure the frequency of physician-perceived challenges based on the last patient who died under their care in the last 12 months, and (2) assess the relationship between the challenges and the physician’s or patient’s sociodemographic characteristics. Results: The results of the scoping review on 40 studies identified ten challenges: physician’s characteristics, family issues, team conflicts, team and family conflicts, institutional and organizational factors, training and educational factors, religious challenges, ethnicity and value-related challenges, human rights issues, and language challenges. Results from the secondary data analysis revealed that 26.9% of physicians reported at least one challenge, such as family conflicts, in the provision of end of life care with the last patient who died under their care in the last 12 months. Conclusion: These challenges restrict quality end of life care. As such, targeted strategies should be implemented to mitigate these barriers to end of life care and improve care.

With aging of the baby boomer population, older adults living longer, and no known cure for dementia, the prevalence of dementia in older adults will inevitably rise. Dementia is a terminal illness, although it may not be recognized as such. Family caregivers to persons with dementia provide invaluable care, often at the expense of their own health and well-being. Over the past two decades there has been an abundance of research that examines the various and complex aspects of caring for a relative with dementia. However, there is a paucity of research that has been conducted on the experiences of family caregivers providing end-of-life care. The conceptual framework that guides this research is based on the work of Martin Heidegger. A thorough search of the literature reveals that the main themes of this end-of-life experience studied to date are the experience of grief and loss, and the manifestations of depression in family caregivers. A number of gaps in the literature remain that limit our understanding of the end-of-life care experience. The purpose of the present study is to begin to address this neglected area of research. As a result, the research question is: What is the meaning of the lived experience of family caregivers who provided end-of-life care for a relative who died with advanced dementia? This question was addressed using an interpretive phenomenology based on the work of Munhall. The study utilized a purposeful sample of family caregivers (n = 11) whose relative with dementia died in the last year. Two to three in-person, unstructured interviews were completed with each participant as a way to glean an understanding of their experiences and offer opportunities for the participant to verify their end-of-life caregiving story. A total of 27 interviews were recorded and transcribed verbatim. Transcripts were hermeneutically analyzed in order to create individual narratives for each participant, reveal the essence of this experience, discuss the influence of the life worlds, consider the taken for granted, and generate an overall study narrative. These findings reveal the complex nature of the end-of-life caregiving experience with dementia.

The purpose of this study was to develop an inductive theory describing the process that hospice nurses use to identify and respond to their patients' suffering. Additionally, the study sought to describe the coping strategies that hospice nurses used when working with patients they considered to be suffering. By examining nurses' responses to suffering, this study is the first step in developing effective interventions to alleviate patient suffering and mitigate its consequences on the nurses caring for those patients. Additionally, by knowing the different strategies that nurses use to cope when working with suffering patients, nurse administrators could institute educational programs, build supportive environments, and develop policies to support nurses as they deal with these difficult clinical situations. This is especially important in a hospice environment where the registered nurse is the focal point for ensuring ongoing patient assessment and implementation of the interdisciplinary plan of care by the various team members. Charmaz (2006) description of grounded theory methodology guided the study design and analysis. Participants identified and responded to their patients' suffering within the context of the nurse-patient relationship. Phases of the relationship included: preparation, establishment, cultivation, maintenance, and letting go. The participants gained insight into the psychosocial and existential aspects of the patient's psyches by cultivating the nurse-patient relationship. Within this relational context, the participants used a four-phase process: observation, issue assessment, suffering, and intervention to respond to their patient's suffering. In addition to pain and other signs of physical suffering, the participants identified other aspects of suffering: role losses, the patient's fear of the impending death, the patient's aloneness, and the patient's feelings of guilt or regret. Interestingly, suffering also was considered a family affair and could involve the loss of self-identity. While the participants recognized the importance of self-care, often they had difficulty naming strategies used to respond and cope with their patients' suffering. Clinical supervision and emotional support through mentoring and practical guidance need to be further developed to help nurses cope with the complexity of feelings that arise when caring for dying people. / text

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With new medical advances in technology, there has been a push from the legal, medical and political communities to re-examine the policies of end-of-life-care. End-of-life-care (EOLC) is a term that refers to not only a patient’s final hours of life, but also the medical care of individuals with terminal illnesses or conditions that have become advanced and incurable. For the purpose of this paper, I will be referring to physician-assisted death and active euthanasia as forms of end-of-care. The Politics of End-of –Life-Care: Active Euthanasia and Physician-assisted Death examines the political disjuncture between the evidence presented in favour of active euthanasia (AE), physician-assisted death (PAD) and the current practice of refusing to grant AE and PAD legal status in Canada. It will examine the political dynamics underlying the disjuncture using political pressure groups, constructivism, rational choice, institutionalism and structuralism. There is empirical evidence that demonstrates support for the legalization of AE and PAD. Sixty-seven percent of Canadians support AE /PAD and 80 percent support allowing physicians to assist in AE and PAD (Angus Reid 2012) however, Parliament has not legalized AE/PAD and the CMA has not sanctioned AE /PAD. The two sides of the debate have clearly communicated their arguments. The arguments on each side are strong and have merit. Conversely, the arguments against AE and PAD appear to hold more weight with institutions than with the public. This thesis examines a number of different reasons for why AE/PAD remains illegal in Canada despite society’s widespread support for AE/PAD. The results of the research found no one method explains the disjuncture between the evidence presented in favour of active euthanasia and the current practice of refusing to grant it legal status. However, discursive institutionalism does help elites to generate and communicate the discourse of AE and PAD. It also explains how discourse can also occur from the bottom which results in a new discourse. For example, physicians, politicians, and the public who have deviated from the accepted discourse on AE and PAD can help to create a new discourse regarding AE and PAD policies.