Friday, September 19, 2003
What is striking about Quebec society is how ill-prepared we are for the huge social and demographic challenges that lie ahead. One such challenge is how to provide equitable palliative care to a rapidly aging population in an era of dwindling family-based support systems.
According to a report released this week by the Conseil de la santé et du bien-être, entitled For a Greater Humanization of End-of-life Care, a dismal five per cent of Quebecers have access to proper care in the terminal phase of a life-threatening disease. Although most Quebecers wish to die at home, nearly 90 per cent do so in a non-specialized hospital ward or in other institutions.
This means a great many have died and will die without proper pain control, even though we have the medical knowledge and technology to alleviate most acute types of pain. It also means that there is insufficient support for the families that care for a dying loved one. In too many cases, both the patient and the family feel isolated and abandoned.
The report underlines that there is no single, pan-Quebec, integrated palliative-care policy. There is no national vision, no plan of action. Programs are scattered throughout the health-care system and include a limited number of hospital palliative care units, CLSCs that offer some home-care support, the Victorian Order of Nurses, which tries to provide home care with its limited resources, as well as a handful of special homes and hospices in which patients live out their last moments in peace.
We know that palliative-care units are often frowned upon by hospital establishments, that formal medical training remains inadequate and that we don't have enough trained doctors and nurses to address this growing need. The quality and quantity of such services also vary greatly depending on the region or the financial resources of the patient.
Although the report oddly fails to mention it, not only are these services lacking but the pioneer palliative-care unit of Quebec, founded in 1975 by Dr. Balfour Mount at the Royal Victoria hospital, was shut down last June because of insufficient resources. It will be integrated into the General Hospital's unit. Montrealers have just lost the amazing knowledge and expertise that this unique unit developed through the past three decades.
So the report warns that "it is urgent that Quebec remedies the major gap between the services that are offered and the real needs of Quebecers at the end of their life." A laudable call, for sure. But it is one of many that have gone mostly unheard.
At the federal level, the Senate released two reports on this subject in 1995 and in 2000. In 2001, the federal government even set up a special council for palliative care and end-of-life care. They all came to the same conclusion about the scandalous lack of resources for dying patients.
This latest report recommends that the population be "sensitized" to the issue of death. But at a time when the Quebec government is warning of another wave of major budget cuts, it is the premier, health minister and, perhaps more importantly, the treasury board president who should be "sensitized" to the resources, both financial and human, that must be invested in quality palliative-care services if they are to be accessible to all, free of charge, as the report recommends.
As well, the labour minister must provide care-givers with legal protection and benefits. Although expectant mothers can take a maternity leave to give birth and tend to their babies at the beginning of life, employers are less forgiving of those who tend to a loved one at the end of life - surely, an equally crucial time.
The needs of the patients and their families are complex and require multiple sources. Their needs are not only physical and medical. They are also emotional, psychological, spiritual and material. Living out the end of one's life in dignity, relatively free of pain and surrounded by loved ones who have access to the kind of support that frees them up during this priceless time, is a sign of civility, compassion and solidarity.
It is now up to Philippe Couillard, the new health minister, to rise to this challenge and make sure that this is the last such report that tells of the dismal state of palliative care in Quebec.
A wake-up call on palliative care
Friday, September 19, 2003