The right time, the right place, and the right people; the combination rarely fail to invigorate or inspire. Such has been my experience with a project called the Canadian Virtual Hospice. As the Co-Chair of the Research Committee for the Canadian Hospice and Palliative Care Association, one of my few and infrequent tasks is to answer research questions directed to the association’s head office. On one such occasion, Anita Stern – a Masters nursing student from the System-linked Research Unit at McMaster University – asked about assembling a national database of Canadian palliative care researchers, with the hope of facilitating easier communication within the research community. Over the course of several weeks, and innumerable conversations later, the idea had grown considerably; if researchers could ‘talk’ with other researchers using Internet technology, why couldn’t care givers connect with other care givers, and consumers – dying patients and their families – communicate with one another to exchange information and offer mutual support? In fact, why couldn’t a virtual hospice house many of the functions that would normally be contained within an actual hospice, hospital or palliative care unit?
With those ideas in mind, a national executive committee was quickly assembled, and the Canadian Virtual Hospice (CVH) began to take shape. Representatives from across Canada, with a broad range of palliative care expertise, were invited to participate. The committee currently includes; Drs. Michael Downing (Victoria Hospice Society, BC Cancer Agency), Serge Dumont (Universite Laval), Konrad Fassbender (Alberta Cancer Board, Grey Nuns Community Hospital), Gerri Frager (IWK Health Centre, Dalhousie University), Romayne Gallagher (University of British Columbia), Pierre Gagnon (L’Hotel-Dieu de Quebec), Mike Harlos (Winnipeg Regional Health Authority), Alex Jadad (University Health Network, University of Toronto), Larry Librach (Canadian Society of Palliative Care Physicians, Ontario Palliative Care Association, The Temmy Latner Center for Palliative Care), Jay Lynch (University of Ottawa Institute of Palliative Care), Jose Luis Pereira (Calgary Medical Region Foothills Medical Centre), and Robin Weir (System-Linked Research Unit, McMaster University).
While the CVH is fundamentally a website – or will be, once it is up and running – we envision that it will house a variety of different activities and projects pertinent to all facets of palliative care across Canada. Planning for the site has been guided by trying to address the question of what dying patients, their families, and their health care providers want and need. Bearing that in mind, the CVH will host on line mutual support groups, making this resource available independent of geography or local expertise. Imagine if you will, a young mother looking after a dying child with an advanced malignancy in a remote, rural setting. The Canadian Virtual Hospice would allow her to enter its ‘Family Room’, and indicate that she wishes to connect with other women and/or men, specifying the age range that she would deem most suitable or comforting, and the disease specific concern – in this case, childhood cancer – that would define the context of her support group. A similar strategy would be used for health-care givers wishing to communicate with other health care givers, or patients wanting to support one another during the course of their advancing illness.
We envision that the Canadian Virtual Hospice will provide a broad range of end of life care services for all key stakeholders with a vested interest in palliative care. The ethos of the project will be that of ‘bringing together’ resources, rather than duplicating those that which already exist, and addressing identifiable gaps in services. Patients, broadly defined family, volunteers, and professional health care providers will have access to various web based resources, offering mutual support on line; information and educational opportunities pertaining to all aspects of palliative, such as CME activities and professional development opportunities; a CVH virtual library containing printed materials, audiovisual resources and web linkages; expert consultation between health care providers, thereby making various components of palliative care equally available across Canada. A variety of interactive activities will characterize the CVH, distinguishing it from so many other health related websites. A full time palliative care nurse clinician will be available to answer posted questions, so that information will be personalized to the needs of its various consumers. ‘Web Docs’ may take call for the CVH, responding to posted questions, directing individuals to the most proximate source of expertise for emergent requests, or providing consultation where no such resource exists. Also distinctive to the CHV is a fundamental commitment to research and evaluation. The project offers palliative care investigators unprecedented opportunities for collaboration, focusing on feasibility issues, satisfaction feedback, and empirical research outcome measures pertinent to various initiatives subsumed within the CVH.
We are so accustomed to thinking about health care in terms of geographic contingencies and physical constraints. In many instances, Internet technology may transcend these limitations, making our imagination the rate-limiting factor. Virtual Grand Rounds, Virtual Memorials in which families might post obituaries, biographies, and eulogies in honor of their deceased loved one, virtual legal council – for patients and families – that pertains to issues related to death and dying; virtual meeting space for palliative care administrators, undergraduate and post graduate educators; the housing of a national palliative care data base; posting and further development of palliative guidelines and standards of care….the list could and likely will go on, as our familiarity, trust and creativity heighten with experience. A thorough needs assessment, in which opinions and ideas form all interested parties will be solicited, should ensure that site development will be guided by the needs and wishes of its users.
To date, funding for the CVH has been provided by the Government of Canada through Western Economic Diversification and Health Canada’s Office of Health Information Highway. A formal business plan is nearing completion, enabling our efforts to obtain further private and public sector capital. The project has been supported by, and generated a great deal of enthusiasm from, various individuals and constituencies from across the country, including the Minister Responsible for End of Life Care within the recently established Secretariat on End of Life Care. Success will depend on our ability to garner the necessary resources, coordinate various activities across a broad, national landscape, and engender trust in the process. In the spirit of bolstering such trust, and to promote a sense of collective ownership, your ideas, opinions, and/or willingness to participate are most welcome. While these are still early days and there is much work to be done, the Canadian Virtual Hospice offers wonderful opportunities to improve the quality and availability of palliative care across Canada…time will tell.