Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

The Franciscan Program— A Canadian Perspective
by
Neil MacDonald, CM, MD, FRCP(C), FRCP(Edin), LLD(HC)

[Citation: MacDonald, N. The Franciscan Program— A Canadian Perspective. Innovations in End-of-Life Care, 2000;2(5), www.edc.org/lastacts]

"Pain can kill" was the title of an editorial by the late John Liebeskind in the journal, Pain. In that article, he mustered evidence on the nocuous effects of pain and stress on the course of cancer.1 Depression also kills;2 while, amongst the many symptoms that bedevil the last days of patients, the cachexia-anorexia syndrome stands out as not only the common cause of dependency and loss of quality of life, but as a syndrome which directly shortens the lives of patients.3 The practice of medicine is based on an understanding that the early identification of a problem will lead to either ready alleviation, or possibly even prevention of the disastrous outcomes that may occur if the problem is not promptly addressed. Is it not logical that we should apply the same thinking to end-of-life care, and apply the principles of palliative care as early in the course of a chronic illness as possible? Nevertheless, this simple concept has been ignored within our health care systems; health professionals, patients and families usually think of hospice/palliative care only when disease is far advanced and death is imminent.

The Franciscan Health System program, Improving Care Through the End of Life, which is described in this issue of Innovations in End-of-Life Care, can serve as a model to help us overcome current ignorance about the importance of introducing palliative care concepts at the onset of a chronic, predictably fatal illness. My congratulations to Dr. Pattison, Ms. Trandum, their colleagues and the administration of the Franciscan Health System for implementing a most innovative program.

It is important for programs of this nature to establish and maintain a comprehensive data base which can demonstrate that enrolled patients have a measured improvement in their quality of life, excellent family-professional interaction, and a high degree of satisfaction with professional caregivers. The data generated may convince skeptics that the rhetoric of palliative care can translate into improved care for patients at a reasonable cost. It is also key because we may learn that, as one would expect from a review of symptom biology, impeccable patient care may improve not only the quality of existence, but also the length of life.

Concern has been raised that the application of palliative care in acute care settings may dilute palliative/hospice care, as professionals would be caught up in the urgent activities of the acute care setting, functioning simply as "symptomatologists" - i.e., technicians who cobble together a pharmacological answer to a symptom, but fail to recognize or address the psychosocial components of illness. Thus, they may fail to provide a "warm envelope of care" for patients and families, an approach characteristic of good hospice care. I presume that our colleagues at the Franciscan Health System are answering this concern through ensuring that excellent support services are married with equally excellent treatment of the biological abnormalities created by the disease and its associated symptoms.

I am asked to comment from a Canadian perspective on the Franciscan Health System program. I wish I could say that we "got there first", but I am not aware of a similar Canadian program which identifies patients dying from a variety of chronic illnesses and provides them with a truly "best supportive care" comprehensive program. In the absence of carrying out a survey, I cannot state this as a certain fact; perhaps Canadian readers will be challenged to correct my impression. In our own setting, we are mounting a pilot program whereby patients with inoperable cancer of the pancreas (a disorder with a median survival in the range of 4-6 months) have the opportunity to enroll in an integrated cancer program combining traditional oncological approaches with specific approaches to pain management, nutrition, exercise programs, identification of psychosocial issues, and, if necessary, professional psychological counseling.4 Our program is in its infancy, and, while we hope to expand it to include other advanced forms of cancer, it may struggle and fail if we are dependent upon existing resources available to us through our health care system; private foundation support will be required.

Our colleagues at Franciscan Health System West are seemingly able to spend the necessary time with patients to ensure that their needs are clearly communicated and addressed. This luxury is not, at present, commonly available in our health care systems. Recently we have been carrying out a qualitative research project on ethical issues at the end of life, as perceived by patients, families, and palliative care volunteers and health professionals. While our analysis is not complete, it is already evident that communication issues surface as amongst the most important ethical concerns raised collectively by all participants. Many of these issues harken back to earlier periods of the disease trajectory, leading one to consider whether a formal communication protocol, mounted at the earliest possible moment, when one knew that a patient would probably die in a predictable period of time, may have alleviated later distress.

I think the Canadian health care system is, please excuse my chauvinism, the best in the world, but our governments, both federal and provincial, have collectively taken a very dangerous step in the last ten years. Although the costs of our system have always consumed a considerably lower proportion of our gross national product than equivalent American costs, our governments decided in the 1990’s that they must cut back sharply on health care expenditures in order to help balance their budgets. There is no doubt that Canada and its constituent provinces were profligate spenders on a variety of programs (but not on health initiatives, with the exception of the occasional unjustified capital project) in earlier decades, and serious deficits were incurred. Draconian measures were taken, not only in the realm of health, but also in education and social welfare, to correct this situation. Rapid success was achieved and our federal government and almost all provinces now have balanced budgets. However, we do ask ourselves some questions. Why did our governments, who still engage in the "politics of grandeur" (elaborate new government offices; disproportionate bureaucratic systems; unwise investments in the private sector), not protect health and education? Why did they not, instead, cut back sharply on non-essential government expenditures? In part, they were strongly influenced by reports of health economists in the early 1990’s, who advised government that reduction of numbers of health professionals and hospitals could be successfully carried out without critical damage to the system. They were wrong. The numbers of Canadian nurses have dropped dramatically in the past few years, leaving us with a critical shortage. Similarly, the decision of our governments to cut back on the intake of students into medical schools in 1993 (roughly a 10 percent cut across the board), has resulted in a problem which, belatedly, the governments are now attempting to redress with urgent requests that the medical schools increase their student intakes. The epidemiologic evidence that the toll of chronic disease was increasing was clearly apparent to all when the decision to cut back on health professionals was made, but this evidence was seemingly not considered. One predictable outcome: while we now teach communication skills to our health professionals, in practice, they are pressed to adequately apply these skills because of the reduced number of people to do the communicating.

Canadian palliative care has a tradition of establishing its large urban programs on a research and educational base. The first programs, at McGill University and St. Boniface Hospital, started in large teaching hospitals. Perhaps they were just being polite, but many American colleagues have indicated their respect for Canadian palliative care, in some part because many of our programs have created innovative academic-community links. There is no doubt that we have many excellent programs, but we stand the risk of falling behind you. We take off our hats to recent palliative care initiatives in the United States. Consideration of end-of-life issues has received an enormous amount of interest and support of late in the United States. The manifest interest of your professional societies, the impetus created by the SUPPORT studies, the report on end-of-life care by the National Institutes of Medicine, and the fruits of the investment by the Soros Foundation and other Foundations such as The Robert Wood Johnson Foundation, are starting to provide large dividends for Americans. Canada has yet to develop a dedicated research initiative in end-of-life care (such as your NIH has inaugurated, albeit with a modest investment of funds), or a dedicated program for training internists (in contrast to the programme on "Improving Residency Training in End-of-Life Care", initiated by Dr. David Weissman in concert with the American Board of Internal Medicine, and with Robert Wood Johnson Foundation sponsorship). Systems for continuing physician education in palliative care, however, are well developed in a number of provinces, together with excellent educational web sites (one example I frequently use is that of the Edmonton Palliative Care Program www.palliative.org; check it out – the site is superb).

I believe that when the Canadian health care system is once again adequately supported, the basic tenets of that system (see Figure 1, outlining its basic principles)5 free us to make enormous progress. Contrary to popular American opinion, the Canadian health care system is characterized by less red tape than one encounters in dealing with the myriad different insurance systems and health maintenance organizations in the United States. Moreover, government bureaucracies can be exasperating, but at least we are shareholders in the system, and "profits" accrue directly to all citizens.

A few current examples of how the structural aspects of the Canadian health care system lend themselves to the promotion of a community-based initiation such as the Franciscan program include :

1. The health care services in a number of Canadian provinces have designated palliative care as a special program. Consequences include the provision of salary support for palliative care physicians and special program support for community palliative care services. In a fee-for-service system it is extremely difficult, if one is indeed spending the necessary time with patients, to make a reasonable income.
2. As health care is developed on a regional basis in most Canadian cities, it is possible to develop fully comprehensive programs which cover whole regions. Consequently, there is less competition between programs, and better opportunities for cooperative endeavors. Many such programs exist in Canada. I am most familiar with the Edmonton Palliative Care Program which covers an entire city region of over 800,000 people. Developed on an academic foundation, the community service program is funded through a base budget by the Edmonton Regional Health Authority, with additional support for educational and research projects provided by both provincial and local hospital and university sources. The program provides sophisticated palliative care services, involving a range of health professionals, for the entire city. Special home nursing care and palliative care inpatient units are available, but a great proportion of the work involves consultation and cooperative activity with the excellent family physicians practicing in the Edmonton region.
3. In the larger city in which I now live, Montreal (over 3 million people), a regional program has yet to emerge. Our McGill program, also developed on a research and educational base, is carrying out a pilot project in which we interact with five community health centers in Montreal. In the core of our city, private family practice is less developed than in Edmonton, and many patients depend on nursing/physician care offered through the community health centers.
4. Many Canadian centers have mobile palliative care teams that visit people at home. An early example, from which we have all learned, is the Victoria Hospice Program; the aforementioned Edmonton program is famous for its interdisciplinary "bus rounds."
5. Publicly supported residency programs in palliative care are now available in Canada. Six of our 16 universities (Alberta, McMaster, Ottawa, Laval, McGill and Manitoba) now offer year-long training programs. As a result, we hope that we will be able to provide a cadre of palliative care specialists who will serve as consultants to physicians with primary responsibility for the care of patients with chronic illness and increasingly involve them in coordinated programs for the early application of palliative care.

In some ways, on both sides of the border, our government health leaders are like World War I generals—overly concerned with the "macro" issues of rear echelon bureaucratic planning and ensuring administrative order with consequent failure to address the simple needs of patients and families at the end of life. All of this will change when innovative models of care such as that exemplified by the Franciscan program are publicized, and our communities and organizations press legislators and medical leaders to reset their priorities.

The diverse and creative palliative care initiatives currently under way in the United States certainly enhance our efforts in Canada. I hope that, in turn, some of our initiatives may continue to interest and influence our American colleagues. While some of your legislators have recently expressed concerns about the permeability of the US-Canada border, mutually, we count our blessings that there is no "duty" on advances in palliative care which freely cross the 49^th.

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References

1. Liebeskind JC. Pain can kill. Pain 1991; 44: 3-4. [Return to International Perspectives]

2. Wulsin LR. Does depression kill? [editorial; comment]. Archives of Internal Medicine. 2000 Jun 26; 160(12): 1731-2.[Return to International Perspectives]

3. MacDonald N, Baracos VE, Plata-Salaman CR, Tisdale MJ. Cachexia-Anorexia Review. Nutrition. In Press.[Return to International Perspectives]

4. MacDonald N, Ayoub JP, Barkun A, Dalzell MA, Gagnon B, Rosenberg L. Carcinoma of the pancreas - an integrated programme. Cancer Strategy. 2000; 2(1): 17-24.[Return to International Perspectives]

5. Roy DJ, Williams JR, Dickens BM. Bioethics in Canada. Scarborough, Ontario: Prentice Hall Canada Inc. 1994: 95-96.[Return to International Perspectives]