Impact of a research project: Palliative services for terminal patients [Version française]
by Fernand Mucci

In the Fall of 1997, the CLSCs Côte-des-Neiges, Métro, NDG/Montreal-West, René-Cassin, and Saint-Louis-du-Parc, and the McGill University Health Centre (MUHC) obtained a grant from the Health Transition Fund (HTF) to implement and test a continuum of palliative services for adults in the terminal phase of their illness. This project is now completed.

In 1996 and 1997, the managers and practitioners of Montreal’s Centre-West CLSCs and the MUHC began a collaborative process in an effort to define a joint CLSC/hospital program that would respond to the needs of adult terminal patients living in the community. The submission of a grant application to the HTF in the Fall of 1997 allowed us to propose the implementation of this program, as well as a model for service organization in order to experiment and improve upon services. This required that the CLSCs and the MUHC come to a consensus on the funding needed to implement the program, and subscribe to a common vision of the services to be offered. In addition, the program’s criteria and modes of functioning had to be coordinated. The researchers involved in the evaluation of the program were associated with the MUHC and the Régie régionale de Montréal-Centre.

The evaluation showed that the model is promising and worth pursuing. Both the patients and the caregivers mentioned the importance of:

• having all required services available every day, with certain services accessible 24 hours/day, 7 days/week;
• home visits by the physician;
• personal contact between the caregivers and the practitioners during the grieving period;
• access to the following disciplines: social work, psychologist, occupational therapy, physical therapy, and nutritionist, as well as nurses, doctors and home-help aides;
• working within a multidisciplinary team.

The care provided improved the quality of life of the caregivers, primarily during the last two weeks of the patient’s life. The average variable direct costs (care and services) for hospitalization amounted to $506 per day; for home support, $152 per day. For the 201 users registered and deceased during the 2000-2001 fiscal year, the average cost of home support was $4,600.

The CLSC practitioners acquired and applied new knowledge and tangible skills related to working with the dying. They assisted people and their caregivers in difficult, complex, rapidly changing situations. They were able to adapt to the role defined for them in the model proposed by the project's developers and push the limits of home support by helping terminal patients up until their death at home, if this was desired and possible. Specifically, 64.2% of the people registered and deceased in 2000-2001 died at home . In this effort, the project offered the following services: a help-line; an on-call nursing, medical and pharmaceutical service; intensive home care services; respite and patient daycare; psychological services; the availability of all disciplines of the home support team; as well as all equipment and supplies, at no charge to the user. In addition, the MUHC palliative care advisory team's involvement increased the number of referrals of users from different MUHC departments to the CLSCs.

As a result of its role in evaluating the implementation, the Régie régionale de Montréal-Centre now has additional information that may serve to define and set up a regional palliative services program based on its home support network. For the Ministry of Health and Social Services, the experience could help specify the organizational and operational structures necessary to provide successful home support services for terminal patients, and to estimate more accurately the investment required by the front-line services system in order to fulfill its mandate vis-à-vis this population.

However, the Régie régionale de Montréal-Centre refused to guarantee the continuity of these services, citing budgetary constraints, and so the five CLSCs and the MUHC are essentially back at the starting point. This refusal sends a demoralizing message to the institutions that took the initiative to improve services to terminal patients, as well as any institutions that may wish to do the same in the future. Undertaking this type of pilot project should be conditional on the commitment of the Régie régionale and the Ministry to guarantee service continuity, assuming the project is successful. Without such a commitment, the institutions of the health and social services system will not be inclined to take risks in order to develop services tailored to the clientele. Their initiative will be stifled.

The demographic data indicate that the number of terminal patients will continue to increase over the next few decades. Death remains an event that can, at best, be postponed. But the quality of life for these people and the respect for their dignity can be improved. This is what we have demonstrated by offering a wider variety and a greater intensity of services to 700 terminal patients and their caregivers.