Ian Anderson House, (IAH) Ontario’s first in-resident cancer hospice, was founded in 1997 in response to a need to offer an alternative to families in the community who were unable, for whatever reason, to provide the necessary round-the-clock care in their own homes to a terminally ill family member. To-date we have provided care and support to 378 residents and families. True to hospice philosophy, we offer our care without charge and since we receive no government funding must rely on the generosity of the community-at-large and on ongoing fundraising efforts in order to continue to provide our much-needed service.
Our “House”, which is situated on a 1.7 acre tranquil, treed lot, has six large private bedrooms, a large country-style kitchen, living room and sunroom. Also true to hospice philosophy, the site was carefully chosen and the hospice designed to create a homelike, safe environment for residents and one that welcomes each family as a unit.
At IAH the operating cost of each bed is approximately $180.00 per day. Seventy-five per cent of our expenses are for staff, which consists of two round-the-clock trained personal support workers who provide ‘hands on’ palliative care and a team of RN Home Coordinators who daily supervise and coordinate the care programs. There are also three part-time employees who ensure the smooth running of the ‘House’ itself. Our extensive use of volunteers, who offer support to our residents and families and help to perform the many necessary administrative, fund-raising and day-to-day household tasks, are also a valuable and essential part of our hospice team. Our Board of Directors also volunteer their time and expertise to oversee the overall management of the ‘House’.
In Canada, the enormous shift from hospital to home care has meant that generally a terminally-ill patient who is deemed palliative or no longer receiving active or curative treatment is, if a palliative bed is not available, discharged from hospital. The choice then becomes either to return home or to seek placement in a long-term care facility. Patients who return home are assessed by the Community Care Access Centre (CCAC) for their eligibility to receive nursing visits, support services and equipment. Indeed, one of the perceived functions of our comprehensive home care program was to augment the family support system and to allow patients to die at home. However, CCAC services, like many others in our universal health care system, are subject to budget restraints, and in an end-of-life situation are seldom, if ever, enough.
IAH works in partnership with CCAC by accessing the nursing and personal support hours of care and equipment that each resident would have received in their own homes. Each resident also remains under the care of his or her family physician or appointed designate. Thus, by working within the existing system and by accessing existing health and social community services, we are able to reduce our operating costs.
Before being admitted to IAH, prospective residents, their families and physicians, must fully understand not only the practical aspects of our staffing, but also the philosophy of our hospice which precludes active intrusive treatment for the exclusive purpose of prolonging life. Our focus is on quality of life and providing a caring environment where the independence and dignity of each resident must always be preserved and respected.
In Canada, the term hospice is generally referred to as a “concept of care” rather than, as it is defined in the Canadian Oxford dictionary, ” a homelike facility for the care of terminally-ill patients”. There is also a current pre-occupation with the creation of standards or norms to provide a “template for the development of programs” for the delivery of “hospice palliative care”, and an ever increasing focus on the importance and need for “hospice volunteers”.
Hopefully this enthusiasm for norms and the interest in the development of the hospice palliative care movement is not a “smoke and mirrors” attempt to obscure the real issues, which are the general lack of education and acceptance of the need to include palliative care as an essential part of the continuum of medical care, the reluctance of the government to fund end-of-life palliative care and the need to provide more support to patients and families in the community. And while volunteers are a valuable component of community support they do not provide palliative care which, by definition, requires medical training in pain and symptom management.
Although residential hospices are accepted and respected in many countries around the world as providers of palliative care, understandably the hospice movement has been slow to develop in Canada. IAH is one of a mere handful that exists in Ontario. But despite the challenges, we will continue to offer practical and humane hospice care and a much-needed and valuable alternative to families in our community.