Nicole Stephen


Nonmalignant respiratory diseases (NMRD), such as Chronic Obstructive Pulmonary Disease (COPD), are a leading cause of morbidity worldwide. Research has shown that patients with NMRD in the UK, Canada and the US have less access to palliative care services than patients with other respiratory diseases such as lung cancer. Discussing preferences for end-of-life care in NMRD can be difficult for patients, carers and health professionals, however it is essential to ensure that the patient’s wishes are met, particularly when resources are scarce. Despite similar nationalised health care systems in the UK and Canada, a recent report by the Economist Intelligence Unit ranked overall quality of end-of- life care in the UK first out of forty, while Canada was ranked ninth out of forty. Therefore, it was deemed useful to investigate how end-of-life for people with NMRD is discussed between health professionals and patients in the UK and Canada and to develop an instrument allowing health professionals to determine constraints and opportunities for facilitating such discussions in each country as comparing care between countries is helpful to determine the best solutions for individuals and families with complex needs. This study was guided by the Medical Research Council guidelines for developing and implementing complex interventions, and the research process followed the requirements for the development phase of these guidelines. First, two systematic reviews were carried out to establish the evidence base regarding of end-of-life discussions. The first focused on how end-of-life is discussed in NMRD, while the second focused exclusively on end-of-life discussions in a single NMRD (COPD) in the UK and Canada only. The findings of the systematic reviews pointed toward the need for further training of health professionals to iii discuss end-of-life with this patient group, as well as the lack indicators that this patient group is ready or willing to discuss end-of-life. Then, a Delphi study was conducted with specialist respiratory nurses in the UK to determine expert opinion on how health professionals know a patient with NMRD is ready to discuss end-of-life, and to establish the key considerations and topics in such discussions. This study was replicated in Canada with health professionals working with patients with NMRD. Each Delphi study resulted in a country specific tool to assist less experienced health professionals discuss end-of-life with this patient group. Finally, the findings of these Delphi studies were compared to determine what health professionals in each country could learn from each other, as well as specific considerations in each country, and areas for future research. The findings from the comparison process demonstrated that the emotional intelligence of health professionals, the patient education context and the recognition of cultural issues were all important factors when approaching end-of-life discussions. Findings from each phase of the intervention development process resulted in a theoretical model of how end-of-life is discussed in the UK and Canada. This model identifies constraints and opportunities for such discussions from a systems level perspective including: end-of-life policies, prognosis in non-malignant respiratory disease, time, clinical indicators, initiation responsibility, the educational role of health professionals, emotional intelligence, cultural competence and readiness versus willingness to discuss end-of-life. Recommendations are made from the findings of this study for research, clinical practice, education and policy. A detailed plan for the next stage of the development of the intervention is included.

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