Different Approaches to Care for the Terminally Ill: Barriers and Facilitators to (Best Practice) Service Provision

• Main Author: Klinger, Christopher Alexander Friedrich Wilhelm
• Other Authors: Deber, Raisa Berlin
• Language: en_US
• Published: 2013
• Subjects: barriers and facilitators to care; case studies; end-of-life care; health policy; hospice; palliative care; Canada; England; Germany; United States of America; 0769
• Online Access: http://hdl.handle.net/1807/35867

Despite (national) strategies/frameworks for care at the end of life, many patients do not die at their preferred location or under the form of care desired. This cross-country comparison study analyzed system-level characteristics - such as legislation, regulation and financing - that might influence service delivery in the care for terminally ill adults and their implications for outcomes and costs. Drawing on triangulated data from Canada, England, Germany and the United States of America and taking a 'most similar – most different' perspective, it was hypothesized that system-level factors might impede the broader use of (integrated) models of hospice and palliative care/the system-wide adoption of best practices. An embedded case study examined resource utilization and costs of shared care and its role as a potential best practice avenue. While similar with regard to leading causes of death, patient needs and potential avenues to care, different service models were employed – including hospice and palliative care. Generally offered alongside standard care along the disease continuum and across settings - and featuring common elements like physical, psycho-social and spiritual care - outcomes (e.g., access, utilization) varied. Legislative (e.g., jurisdictional), regulatory (including education and training) and financial issues were identified as barriers, as were public knowledge and perception ('giving up hope') challenges. Advance care planning, dedicated and stable funding, population aging and standards of practice/guidelines to care were seen as facilitators. Successful policy implementation requires concerted action to align system-level characteristics – with each alone being essential but not sufficient. Policies need to be monitored and fine-tuned, with a caveat toward their transferability between jurisdictions. The analysis of the shared-care approach in the rural Niagara-West setting revealed effective and efficient home-based hospice and palliative care – on par with per diem funding for long-term care homes and lower than average alternate level of care and hospital costs in Ontario, and in line with the Medicare Hospice Benefits in the United States of America. The thesis results provide a base for further analyses across jurisdictions and settings and might assist decision makers in the allocation of resources to meet the complex needs of hospice and palliative care populations.