Durham Region has a long history of a well-developed palliative care service for both hospitals and the community, and willingness for health-care providers and volunteer organizations to work together. This is why the Health Services Restructuring Commission, before disbanding in 1999, requested the Region look at describing an integrated palliative care system.
The Durham Region Integrated Palliative Care Project was the first step in the process. A steering committee was brought together to oversee the project. The steering committee consisted of hospitals such as Lakeridge Health, hospices, cancer support centre, community care access centre, Durham Region Healthcare Group and the District Health Council. Consultants were hired to conduct a survey of what was in place in the present system.
An integrated health system was defined in this situation as being a network of health care organizations which is fiscally and clinically accountable for the provision of the full continuum of services to a defined population, in this case, palliative care.
To identify the strengths and weaknesses of the current system, key informant interviews, two surveys, one to service providers and the other to physicians, focus groups with caregivers/families of patients who had received palliative care and telephone interviews with patients/clients of palliative care were conducted.
In order to implement a fully integrated palliative care system in Durham Region, it was necessary to identify how the current system could become integrated and to identify a structure that would support decision making for the new system. The Palliative Care Network had existed in Durham Region since 1995. This is a group that shared palliative care information, but lacked the ability to make decisions to impact on current practices. Therefore, the Palliative Care Alliance for Durham Region was formed.
The Palliative Care Alliance for Durham Region makes decisions around micro level or practical, community based issues. The focus becomes the integrating mechanisms that flow from the weaknesses identified by patients/clients, their caregivers/family and the palliative care providers. Members of the Alliance include representatives from hospitals, long term care, the community care access centre, consumers, palliative care physicians, grief counsellor, hospices and cancer support centre. All members signed a memorandum of understanding that stated decisions made by Alliance members would be implemented across the region.
The Palliative Care Alliance for Durham Region met for the first time in June 2000. They took the information obtained from the surveys and identified what were the priorities to be improved first. The three weaknesses identified were; physician issues, information to patients and families and caregiver concerns. Working groups were formed with a member of the alliance chairing each group.
In a relatively short time a great amount of progress has been gained. The Alliance meets approximately six times a year, discussing the progress of the working groups and identifying new palliative care issues that arise in the Durham community. The Alliance has implemented a number of projects in the last year and a half with many still in progress.One major initiative that has been implemented is the Expected Death Policy. The issue of decreasing number of physicians pronouncing death in the community was brought forward, and the Durham Region Ambulance Service identified that many palliative care patients were calling 911 when death occurred and they would be resuscitating someone that had a life threatening illness with no cure. A solution to both of these issues was brought forward through the Alliance. A package has now been devised which provides a mechanism for nurses to pronounce death at home and provide documentation to the ambulance to respect a do not resuscitate (DNR) order when 911 is called.
The package includes documentation for physician, and client or substitute decision maker which clearly states the patient’s wishes concerning DNR, a care plan for expected death, and directions for the family on what to do when the patient dies. Families have found these directions extremely helpful and it has taken away some of the immediate stress that they are faced with. This was started as a pilot project that is now moving across the region. The package seems to be working well, and evaluations are now taking place. This is just one example of how the different groups involved in palliative care worked together to solve a problem.
Other projects include a website for clients, caregivers, health-care professionals and physicians that would allow them access to the newest information to provide quality end of life care. An information package has been developed for patients and families to provide them with information on where to get help, symptom management, legal issues, and bereavement. Caregiver workshops have been delivered on such topics as caregiver burnout, pain and symptom management and future sessions are planned.
The Palliative Care Alliance for Durham Region continues to evolve and work toward more integration. Palliative Care has been improved through this collaborative environment without a loss of identity on the part of the alliance members.