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Authors

  1. Brown, Barbara J. RN, EdD, CNAA, FAAN, FNAP, Editor

Article Content

Patient's Point of View

When Mary Anne McCrea suggested this issue at the NAQ editorial board meeting a few years ago, I could not have been more pleased, because family-centered care has been my nursing mission for almost four decades. For me, it began advocating family centered maternity care when I was Natural Childbirth Supervisor for the greater Milwaukee area in the 1960s. As I had the opportunity to change an entire hospital and nursing home's mission from a "doctors'" hospital to a "family" hospital in the 1970s with my family-centered care theory and practice model, resulting in an early Magnet hospital recognition, this issue brings a renewed hope to the practice of nursing and administrative leadership as I always envisioned. It is a pleasure to present Mary Anne McCrea, vice president and chief operating officer, St. Joseph Health System, Humboldt County, Eureka, California, as issue editor. Mary Anne expresses the epitome of patient centered care in today's tumultuous times in health care. She clearly represents the combination of judicious economic and patient concerned caring leadership.

 

As I reflect on my own values in family-centered care and the transformations of health care systems that truly kept the patient as the center of focus, I came upon the first family-centered care national conference report from June 1975, "Changing the Health Care System." Audience response was overwhelmingly supportive: "Family-centered care is possible." "We must all work together to promote the concept" "It has challenged me in creative ways of bringing together nursing theory and practice." "It has been gratifying and stimulating to see how you have been able to institute such change and make it work." Family-centered care involves humanism and professionalism in a multidisciplinary approach to maximize the quality of care. Health professionals practice in concert, placing the patient and family at the center of experience. The patient maintains as many controls as are medically and therapeutically sound, and has the true right to refuse any treatment offered. Each patient must be viewed as an individual, a family member, and a member of the larger community. Each person is the master of his or her own life. Because this self-mastery may be threatened by illness and hospitalization, each health care provider should be committed to helping each patient regain or maintain control of his own environment and life style.

 

The family is a group of people who value and love each other and that the patient declares is close to him and involved with him on a daily basis. Although there are legal constraints on us regarding the rights of relatives by blood or marriage, we recognize that a patient's family may well consist of others. The family is vital in the health and welfare of each person. Why are there so many homeless with mental disabilities? Where are the family support groups to help so many in need in this country? What has happened to the families of so many seniors in long-term care facilities? Can we, as nurses, find a way to create alternate families as society has for children in foster home care?

 

But do we include families in the care and decision making of loved ones where possible and wanted? A neighbor stopped by this afternoon and shared with me the wonderful experience he had at a local hospital, where his wife of 52 years had a long hospitalization. He was able to stay in the empty bed in her room for a week while she was in rehabilitation after a stroke. He slept better and she certainly was assisted in her recovery by his loving, caring presence. The stroke occurred after major abdominal surgery for colon cancer and they have a long way to go while she starts chemotherapy this week. But, I never saw him looking better-not since a few months ago when the emergency hospitalization started. He radiated satisfaction at her progress and the importance of the family centered care they received. What are the family rights in health care? The family has the right to expect:

 

1. To be treated with respect and kindness.

 

2. To be informed about and participate in the care of the patient where desired and possible.

 

3. To be educated with regard to (role of life style) changes resulting from the patient's condition. To be "included" as important people.

 

 

Are you committed to raising the health awareness in your community in order that people may be motivated to seek health care and lead a more healthful life?

 

To change a traditional health care system, a family-centered care framework is essential. Two major questions need to be considered in relation to a theory of family-centered care:

 

1. Is there a body of knowledge proper to family-centered care which may be identified as theory? Is it possible to arrive at a definition of family-centered care in terms of its nature, purpose, structure, and function that identifies family-centered care distinctly different from other traditional patient care approaches?

 

2. Is there a body of applied knowledge for family-centered care? Have the rules and procedures for the application of the theory of family-centered care to the concrete matter situations of individual patients and families been worked out with care and precision?

 

 

If these questions can be answered in the affirmative (ie, if the theory and the applied knowledge can be spelled out precisely), then the possibility of identifying family-centered care as a methodology such as team nursing, primary nursing, primary care, case management, and others does exist.

 

It is the role of the administrator of nursing or patient care to move or to self-actualize the organization and each staff member by creating a psychological environment of optimum freedom, energy release or leadership, and linkage or statesmanship. It is not total freedom, rather a very carefully, deliberately constructed balance between control and freedom. Do you, the nurse administrator, encourage creativity and innovation in patient care? Is evidence-based practice significant in your care delivery system?

 

Is each nurse allowed the opportunity for self-determination of professional growth and afforded financial support to achieve that growth?

 

Where are you with all levels of leadership? The recent AONE/NurseWeek national survey of nurses about the nursing shortage showed that one of the major dissatifiers is lack of managerial support and leadership for the staff nurse. A climate of positive leadership toward family-centered care stimulates the release of potential energy into effective achievement of its goals. Is staff motivated to create innovative programs for patients and families? Do patients and families feel free to participate in their own care programs?

 

If there is a positive climate of statesmanship and linkages to all aspects of the health care system, the communication produces a climate of acceptance and support of the individual and the organization, meeting each other's goals. Is there free communication and interaction between nurses and other health care team members? Is staff encouraged to exchange knowledge with each other and share expertise? Are citizens in the community given an opportunity to express concerns and needs. I do not mean as board of trustee members. Do you have patient advisory councils?

 

In family-centered care we cannot continue to do what we think is best. We define patient's needs for them in an attempt to satisfy our needs. Very rarely do we ever let the patient tell us what his needs are. There is national professional dissatisfaction with the current way that care is being given. There is a better way. In Stanley Kubrick's film, 2001, he created the image of a touchstone. The touchstone image was carried out in the film through the development of mankind as a method of determining the quality of something. Our touchstone is the patient and family.

 

Why not recognize that each patient is the master of his or her own life? Why not treat each patient as an adult, thus providing for personal decisions relative to his or her care? Why not provide the patient with as much control in his or her life and environment as possible? Why not enable the patient to remain in close contact with loved ones? Why not provide for family attachment rather than detachment during hospital stay? Well, why not indeed? The future of health care depends on active participation with patients and family. Saudi Arabia has a sitter sleeping space in every room so a family member is welcome to stay with the patient throughout hospitalization-and does. Especially with the increased shortage of nurses, every patient needs a self-appointed patient advocate and caregiving participant family member as part of the care team. Patient Point of View is the only possible way to a better future in the delivery of health care.