Supporting Self Care Network
Newsletter
October 1, 2002, #5

Health Care Users Speak Up...

Contents

Welcome
Editorial
Highlights
Member Profiles
In Practice
Sharing Resources

Welcome

by Dr. Carol McWilliam, School of Nursing, Faculty of Health Sciences, University of Western Ontario

Welcome to this issue of the Supporting Self-Care Network Newsletter. Whether you are a health professional, educator, student or health care system user wanting to improve supporting self-care practices, your commitment to and participation in this initiative makes an important contribution to health. Health, our ability to realize aspirations, satisfy needs and respond positively to our environment, a resource for every day living, demands self-care. Supporting self-care therefore constitutes a giant step toward the aim of health.

Collectively, society has done a good job of optimizing our resource for everyday living where medical problems are concerned. Research indicates that 80 to 95% of all such problems are managed at home through self-care, by people who have tried to treat themselves before seeking medical services. But we have yet to confront other challenges, and this newsletter affords a vehicle for doing this.

As protectors and promoters of health as a resource for everyday living, societally, we still tend to overlook our individual and collective potential for self-care. Healthy lifestyles, particularly well balanced diets and activity levels, remain an elusive self-care goal. Perhaps even more challenging, professionals and those who require their services have yet to master the fine art of participating as full partners in care. Collaborating to achieve an appropriately balanced use of the knowledge, status and authority that each individual brings to a care partnership may help all of us to optimize our individual and collective health through self-care. I hope that you find in this newsletter the inspiration to tackle these self-care challenges.

Editorial

by Hector Balthazar Supporting self care is the central theme around which this Network of health professionals has been created. In the current issue of this newsletter, self-care is explored from the point of view of health care users, including doctors who have experience as patients.

Wayne Weston, speaking both as a medical doctor and a patient, testifies to the immense differential in status and power that exists between the professional and client in a service setting. Often the difference in status and a desire to be a "good patient" hinders a productive, egalitarian, interaction. Wayne stresses that the welfare of both the professional and the patient depends on the ability of the former to focus on the latter's mental and physical condition and to create a climate where a true partnership can flourish.

France Marquis reports on a conference she attended on the theme of partnership in nursing research. Her message is that partnerships enrich all who share in the exercise and that interdisciplinary arrangements are likely to have an impact in bringing about structural and social changes.

In a concise and dramatic style, Pierrette Fortin, the spouse of a cancer patient, describes the experience of dealing with medical staff. She emphasizes the need to obtain proper information to make enlightened decisions and she credits a student for making it possible for her to get the information needed to optimize her husband's treatment. Her plea is that medical personnel should take it upon themselves to provide such information or direct patients to proper sources.

Laurie Potovsky reviews Timeless Healing, a book by Herbert Benson, a doctor ahead of his time. It is a gold mine of information about the integration of body and mind, showing that values and beliefs can heal not only spiritually but physically as well. This is a life affirming book, full of positives for all who seek answers beyond the traditional approach in the treatment of disease.

Lynne Young reviews an article entitled Welcome to Cancerland, by Barbara Ehrenreich, published in Harper's magazine. The author was diagnosed with breast cancer herself and her experience with treatment revealed to her that very little progress has occurred over the years. Given the vast sums of money raised for the purpose of cure and those spent for care, she questions whose interests are truly being served and points an accusing finger at certain multinational corporations. Her plea is for significant and major improvements in the management of breast cancer.

Daniel Laguitton presents a few websites on doctors who become patients. The point is made that professionals who have lived a sickness are more likely to be understanding of patients than those who haven't. Two films cited are highly recommended as items to be included in the training of professionals as they can positively influence the attitude of professionals vis-à-vis patients. Testimonies by doctors themselves give credence to the notion that being a patient is vastly different from being a professional.

Hector Balthazar is a caregiving retiree who lives in Ottawa. Prior to his retirement, he laboured to advance the development of the self-help movement at Health Canada and the Canadian Council on Social Development.

Highlights

The Quebec CAUSN meeting
by France L. Marquis, M.Sc.Inf., professeure agrégée, Université de Moncton-Campus d'Edmundston

On June 12 to 15, 2002, Quebec City hosted the "Canadian Conference on Nursing Research", sponsored by The Canadian Association of University Schools of Nursing and Laval University. The theme was "Partnerships in nursing research: Challenges, Effectiveness and Spin-offs".

The conference opened with a presentation entitled, "Partnerships in Research: a Tandem of Opportunities and Constraints" by Dr Francine Ducharme of l'Université de Montréal. This topic was of much interest to members of the "Working Group on Supporting Self-Care". Having clarified the difference between partnership and other concepts such as collaboration, Dr Ducharme described different types of partnerships and their key components, advantages and disadvantages. The very foundation of a partnership seems to depend on the values, principles and objectives carried by each of the partners. The modalities of conflict resolution, leadership and intellectual property management must also be clearly spelled out early in any partnership. The same is true for any expectations partners may entertain regarding the research improvements and the benefits each of them may derive.

Published studies show that research conducted in partnership has more impact than research performed alone or in a monodisciplinary context. Partnership has become a key ingredient of success in strategic research. It contributes to the development of intra disciplinary, interdisciplinary and inter sectorial knowledge and to its dissemination into environments that include several bodies and organizations.

Closing remarks of that session, by Dr Ginette Lemire Rodgers, explained the importance of research partnerships to achieve social and organizational changes.

Several participants of Health Canada's "Supporting Self-Care Project" attended the Conference and presentations were made by some of them. Lynnette Leeseberg-Stamler and France L. Marquis presented a thirty minute bilingual plenary session about the Supporting Self-Care Network. Also, a team from Moncton University (Edmundston Campus), namely France Marquis, Noëlline LeBel and Dr Pierrette Fortin, presented an oral and poster session on the collaborations required for the development of a new supporting self care tool for people undergoing day surgery.

The final report of the project entitled "Supporting self-care: a shared initiative, 1999-2002" was made available to the Conference participants. Nine members of the Network and of the Working group on Supporting Self-Care also met to discuss the upcoming activities and the future of the network, its transfer to a University host or its integration into a new initiative to renew primary care.

Lastly, the conference provided a suitable forum to explore various ways to foster the synergy required to develop successful research partnerships.

Member Profiles

Heart Attack - A Doctor's Experience
by W. Wayne Weston, MD.

I have been an advocate for patient-centred care, but I realize how hard it is for patients to have a voice in decisions even when physicians are friendly and invite dialogue. My own recent experience has underscored this.

A few months ago, I awakened at 1:00 a.m. with burning pain across my chest. Fearfully, I wondered if this was my heart. An antacid brought no relief. I vomited, the pain got worse, my wife called an ambulance. I took aspirin, in case it was a heart attack. The ambulance attendants started an IV, gave me nitroglycerine and took me to the hospital where I work. It felt odd to be receiving care instead of providing it but the fear disappeared - partly because the pain was so bad that all I could think about was getting relief and partly because I knew I was in good hands. One of the team members did an ECG and held up the readout where I saw the evidence of an acute MI.While in the ER, I don't recall anyone discussing my diagnosis or treatment. Next day, pain free and alive, I met with my cardiologist. He told me I also have diabetes. Insulin injections, 4 times a day, were added to beta-blockers, ramipril, aspirin, pravachol, and injections of low molecular weight heparin. There had still been little discussion about all this treatment. Fortunately, I knew from my professional experience that these were standard therapies.

When I was to be put on glyburide for diabetes, I asked for metformin. They were hesitant, but agreed. When my gout flared up, I asked for NSAIDs. The medication arrived immediately. The rapid response was impressive, but surprisingly, there was no discussion.

On the day before discharge my cardiologist outlined the pros and cons of being on warfarin for a few months. When he asked if I had any questions or alternative suggestions, I was hesitant to start a discussion. I knew he was busy, I didn't want to impose, I wanted to be a "good" patient.

In reflecting on this experience, I was struck by how vulnerable I felt. Although I spoke up about the treatment of my diabetes and gout, I did not query the treatment for my heart. Perhaps discussions about options, or to explicitly address any patient reluctance, need to take place over several visits.

Returning to my own practice I realize, more fully, the tremendous power differential between patients and doctors. My own experience will help me try to bridge that gap and encourage my patients to give voice to their ideas and concerns.

In Practice

Information proves critical in supporting the self-care efforts of a husband
by Pierrette Fortin

November 20, 1998... my husband Denis consults his doctor for an abnormal tightness in a testicle. He is immediately referred to a urologist who diagnoses a testicular neoplasia and removes that testicle the same day.

Our two children are 18 months and 6 years old. I am in shock. My husband hopes that the worst is behind us. Yet, on December 9, we are told that he has two masses in the retroperitoneum. The urologist suggests to wait and see, but having extensively searched specialized publications and the Web, I know that the size of such masses can double in twenty days, and I believe that waiting is not the right thing to do. Two days later we consult an internist and a urologist specializing in this type of cancer. By December 28, four cycles of chemotherapy are prescribed.

From my research I knew that at this stage of the disease, three cycles should be sufficient. Since four cycles had been prescribed, I feared that my husband's condition was worse than what we had been told. After two cycles, the two masses were reduced to residual tissue. After the third, Denis enquired about what could justify a fourth cycle. The internist checked with the urologist who stood by his initial prescription of four cycles. Another expert, consulted at our request, recommended three cycles. We feel fortunate that the internist listened to us and that he accepted modification of the treatment protocol. A few weeks later a new surgery revealed that the residual tissue was non-malignant.

I believe that by gathering pertinent information ourselves, we played a key-role in speeding up the treatment and avoiding an unnecesary cycle of chemo. However, our battle was not yet over. As a result of his surgery, my husband suffered from chronic back pain and the chemotherapy had disrupted his hormonal balance but that imbalance was not diagnosed until February 2001. By February 2002, he had adjusted his hormonal balancing treatment on his own and he has since been slowly recovering.

My perspective on health care has changed through this ordeal. I now believe that keeping well informed is essential for both the patient and his family. I am indebted to a student for the discovery of an excellent website on testicular cancer ( www.acor.org). I wish I had been shown that address by health care professionals who should have been more atuned to my needs.

Sharing Resources

Book Review
by Laurie Potovsky-Beachell

Timeless Healing: The Power and Biology of Belief, Herbert Benson, MD, with Marg Stark, 1996, ISBN 0-684-81441-2 and 0-684-83146-5 (Pbk)

Imagine health and well-being as the seat of a three-legged stool. Supporting it, modern-day techniques of surgery and other procedures are one leg, the second is a myriad of pharmaceuticals and medicines. Of course, to provide the sturdiest support, the stool must be well balanced, but the third leg is self-care.

Self-care, as defined by Dr Benson, goes beyond nutrition and physical exercise. Our minds, the element in each of us that defines our humanness and our individuality, are the greatest source for self-care and, if allowed to do so, can wield a heavy influence in the healing process. Unfortunately, as medicine is practised today, this resource has been relegated to folklore status. Dr Benson has dedicated a lengthy career to researching the intermingling role of mind/body healing and to developing techniques that invoke its use. In just a little over 300 pages, he shares his knowledge and experience, uses the results of other independent studies to back up his own research, and illustrates how advantageous it would be to the entire health system if the third leg were as strong as the other two legs of the stool.

In an era where dissatisfaction is rampant - on the part of patients and medical practitioners alike - and "unconventional" treatments are growing increasingly popular, this book holds a message of hope that all three legs of the stool have equally important roles to play in health care. It is well worth a read.

Article Review
by Lynne Young RN PhD
Welcome to Cancerland
Barbara Ehrenreich, B, (2001),Harper's Magazine, 303(1818),November, 43-53

Always thoughtful, always provocative, and immeasureably insightful, Barbara Ehrenreich, a highly regarded theorist, turns her pen to a critique of breast cancer care, for her "a cult of pink kitsch". Speaking as a breast cancer survivor, Ehrenreich charts her journey from prediagnosis to an uncertain present using her story as a platform for a scathing, entertaining, and thoughtfully considered analysis. Ehrenreich begins the journey, one analogous to Alice's in Wonderland, in the mammogram waiting room where a plethora of cute and sentimental messages in all their pink rosiness was the beginning of an infantilizing and suffocating process. Once figuratively down the rabbit hole into the land of cancer care, initial efforts to maintain her dignity by asserting herself as a partner in her care turned to relative inaction when she realized that her choices were few since, in spite of new surgical and pharmacological inteventions, breast cancer survival rates have changed little since the 1930's. Ehrenreich then walks, or rather marches, readers through whose interests are served by the current state of breast cancer care implicating the multinational corporate enterprise. An important contribution to understanding the lived experience of breast cancer, this article is a stark reminder that cancer care must be improved.

Website Review
by Daniel Laguitton

If the best way to understand another person is to "walk in their shoes", health professionals who have been patients should be more sensitive to their clients' needs. This fact has not escaped Hollywood's attention: In a 1991 production, The Doctor, a physician with terrible bedside manners learns he has cancer and, through his illness, comes to terms with his own humanity. As one reviewer put it: "This film should be required viewing for any training or development on health care, communication, leadership, and service. Watch this the same week you watch Patch Adams and you'll be a better person emotionally for it." www.norcalmovies.com

In the 1997 exploratory study published by Health Canada: one doctor explained that ... "Having been there permits me to understand my patients not only intellectually but also emotionally, allows me to present things with more empathy, more complicity, let's say, and to not simply moralize." http://ww.hc-sc.gc.ca/hppb/ healthcare/pubs/selfcare/indexof.htm The Health Commons Institute (HCI, Maine) conducted similar interviews of five doctors who have experienced illness and concluded: "A strong theme emerged: the need for improved communication between doctors and their patients around treatment options." www.healthcommons.org

A long list of references is provided by HCI, of which the following abstract is typical: "Lear, M. W. 1980. Heartsounds. New York: Simon and Schuster. Harold Lear, surgeon, was stricken with a heart attack in his early fifties. As a surgeon he had always been in control. As a patient experiencing a devastating cardiac condition, surgery and surgical complications, he was surprised and angered by the way he was treated medically and personally." www.healthcommons.org

Thus, the bottle is half full of hope, and yet... it is also half empty since, according to another study, doctors "delay seeking attention and work through illness". www.tribuneindia.com.