Shared care: the barriers encountered by community-based palliative care teams in Ontario, Canada

Abstract

To meet the complex needs of patients requiring palliative care and to deliver holistic end‐of‐life care to patients and their families, an interprofessional team approach is recommended. Expert palliative care teams work to improve the quality of life of patients and families through pain and symptom management, and psychosocial spiritual and bereavement support. By establishing shared care models in the community setting, teams support primary healthcare providers such as family physicians and community nurses who often have little exposure to palliative care in their training. As a result, palliative care teams strive to improve not only the end‐of‐life experience of patients and families, but also the palliative care capacity of primary healthcare providers. The aim of this qualitative study was to explore the views and experiences of community‐based palliative care team members and key‐informants about the barriers involved using a shared care model to provide care in the community. A thematic analysis approach was used to analyse interviews with five community‐based palliative care teams and six key‐informants, which took place between December 2010 and March 2011. Using the 3‐I framework, this study explores the impacts of Institution‐related barriers (i.e. the healthcare system), Interest‐related barriers (i.e. motivations of stakeholders) and Idea‐related barriers (i.e. values of stakeholders and information/research), on community‐based palliative care teams in Ontario, Canada. On the basis of the perspective of team members and key‐informants, it is suggested that palliative care teams experience sociopolitical barriers in an effort to establish shared care in the community setting. It is important to examine the barriers encountered by palliative care teams to address how to better develop and sustain them in the community.

Pediatric palliative care in the community

“…This “shared care” model of CBPPC can assume myriad forms but typically involves the PPC team in the role of consultant to a local provider (eg, local oncologist, community‐based PPC clinician, hospice agent, or primary pediatrician), with the local clinician acting as the driver of care . However, because the coordination and provision of CBPPC require a level of expertise and time commitment that may be beyond the scope or comfort of local providers, in certain circumstances, it may be preferable to use a model in which CBPPC clinicians directly manage and provide care, as opposed to lending expertise via consultation. The caveat, however, is that this CBPPC‐led model is not sustainable in the long term without adequate funding, resources, and staffing .…”

“…However, because the coordination and provision of CBPPC require a level of expertise and time commitment that may be beyond the scope or comfort of local providers, in certain circumstances, it may be preferable to use a model in which CBPPC clinicians directly manage and provide care, as opposed to lending expertise via consultation. The caveat, however, is that this CBPPC‐led model is not sustainable in the long term without adequate funding, resources, and staffing . Lack of reimbursement from insurance companies, insufficient clinical personnel to manage large patient volumes, and inadequate ancillary support to track and process paperwork contribute to suboptimal access to CBPPC …”

“…Despite increasing community‐based needs, the percentage of hospices offering pediatric care actually decreased from 2002 to 2008, and increasing competition among hospices has been associated with a decreased probability of having pediatric services . In particular, skilled pediatric nursing is not universally available, and children who live in rural areas often lack access to these services . Hospice nurses without pediatric expertise face unique challenges when caring for children in the community, including difficulties with preparing and administering medications at correct pediatric dosages, interacting with grieving families, and coping with the emotional toll of caring for a dying child .…”

“…As mentioned above, the current fee‐for‐service paradigm is inadequate to subsidize the services needed to provide high‐quality care in the community for children with life‐threatening conditions and their families. Although physician and advanced practice provider services are billable in the current system, other interdisciplinary CBPPC clinicians are not eligible to bill for services rendered . In addition, programs caring for children with cancer who receive parenteral nutrition, transfusions, and chemotherapy concurrently with CBPPC or hospice often lack sufficient reimbursement.…”

A qualitative study examining the sustainability of shared care in the delivery of palliative care services in the community

“…Shared care is established when the team works in consultation with family physicians and community nurses. In our previous research with the teams of concern herein, identified barriers, such as lack of funding for non-physician team members and the inability to secure buy-in from primary care providers, were shown to have posed challenges in their pursuit of the shared care model [15]. Additional research has also explored the factors or facilitators employed by the teams to overcome challenges, such as securing funding for non-physician team members, and undertaking capacity building initiatives with primary care providers [16].…”