"I am an obese 75-year-old man," writes Byron Farwell, in his intimate glimpse at health care in America. "I recently had a large cyst removed from my spine, along with some bits of bone for which the surgeon said I had no need... My habitat [in the hospital] was a world of women: registered nurses, practical nurses, nurses' aides, students, technicians, cleaning women, and women who brought and removed trays of food. Most of the nurses were saints. Certainly they were during my first night after surgery, when neither the do-it-yourself painkiller kit with which I was provided nor the shots of who knows what narcotic relieved my 'discomfort'- the physicians word for excruciating pain. A brave nurse dared wake the surgeon at midnight, and the surgeon kindly increased the dosages of painkillers so that they eventually brought me relief. The next day, my do-it-yourself painkiller was removed from me. When told what was to replace it, I expressed doubts to the nurse about its efficacy, for it had been tried before my operation without success. To my astonishment, she reacted as if I had personally insulted her... Food at the hospital was provided by cooks who had failed to qualify as airline chefs. I ate only some fruit. No one noticed whether I ate or not. I suppose it was an added bonus if I lost a few pounds. I was never cleaned up. When I felt well enough to clean myself, I requested a wash rag and hand towel. I thus managed to scrub off some of the dried blood and remnants of adhesive tape... The major concern of the staff was to see that I urinated-or to use a medical term favored by the nurses, "peed." Nurses propped me up beside the bed and held out a urinal, asking me if I could perform. Standing between two young women who watched carefully, 1 said, 1 thought not... It was hands-on day for the local nursing school, and fresh-faced young female students came to take my blood pressure, feel my pulse, and stick needles in my buttocks. Any remnant of human dignity I possessed was shred when a pretty teenager was called on to insert a catheter" (Farwell, 1996).
So the atory goes, apparently for some 37,000 Americans who responded to a survey sponsored by the American Hospital Association (Lagnado, 1997). The survey was sent to patients recently discharged from 150 hospitals nationwide; the AHA conducted follow-up focus groups of individuals chosen at random in 12 states. The report concluded that patients have great angst about reduced access to care, higher expenses and a sense that their best interest is not considered in decision-making. They see an increasing trend toward care that is cold and impersonal." Nearly one-third of the respondents felt that they were discharged from the hospital before they were ready; 30% said they weren't alerted upon discharge to danger signals to watch for and 37% said that they had no idea when they could resume normal activities. Both the patients and focus group participants indicated that they don't care much about the niceties of a luxury class hotel that many hospitals are offering; rather they want more communication with their nurses and physicians. William Speck, president of Columbia Presbyterian Medical Center in New York, quoted in the Wall Street Journal agrees, "The whole system has become depersonalized. A lot of the decisions have not been made in the best interest of the patients, but on financial imperatives."
As nurse educators, we have witnessed the dramatic changes in nursing care delivery, particularly in acute care settings and in geographic regions where for-profit managed care has taken the greatest hold (Buerhaus & Staiger, 1996). Cost reduction efforts, work redesign and restructuring have had an enormous impact on nursing practice. RNs have become increasingly responsible for supervision of unlicensed assistive personnel (often with little educational preparation to do so); nurses clearly see that they are taking care of more patients, and have substantially less time to provide all aspects of nursing care (Shindul-Rothschild, Berry, & Long-Middleton, 1996). But at the moment we don't have reliable and valid national data on the magnitude and distribution of changes in nurse-staffing patterns and we have little empirical data about the relationship among staffing models and patient outcomes (Wunderlich, Sloan, & Davis, 1996). It is unlikely that the for-profit managed care train is going to be derailed with anything less than good data, total public outrage, or both.
As nursing insiders, it's hard to imagine how anyone could not get what's going on here. Anecdotal accounts like Mr. Farwell's have become almost daily fare in the news media, but seem to have been largely dismissed by provider groups, health plans and policymakers. Now, thanks to the AHA commissioned study, we have data showing the widespread public dissatisfaction with their hospital experiences. We have learned that a large number of patients feel that they did not receive vital support in learning to care for themselves, in coordinating their care, in involving their families and friends in their care and in easing their transition to home. What the public may not know is that they would have all this support and more with good nursing care.
Several years ago, one of my doctoral students did a study of expert nursing practices in the care of dying patients and their families, in the ICU (Wros, 1995). One family member commented in response to the interviewer's question about memorable nursing care: "You know, nursing care is invisible unless it goes wrong." I've thought a great deal about his comment lately. It seems to me that patients are not likely to remember (or even know about) the ongoing surveillance that nurses do, the prevention of problems before they become big, the assurance that pain does not get out of hand by staying on top of it, the coordination, incidental teaching and working with families to ease the transition to home; they know it when it's not done. As nursing insiders, it is often hard for us to know and describe our taken-for-granted practices, to explain why we can't just delegate the surveillance to the nurses' aide, or why the CD-ROM designed to help women choose among treatment options for their breast cancer, may be lacking something. But we must. And herein lies the call to looms- a call, in Suzanne Gordon's terms, to reweave the tapestry of care.
Suzanne Gordon, as a journalist and author investigating health care and public policy, has spent nearly a decade studying nursing practices. For her new book, Life Support: Three Nurses on the Front Lines, Gordon spent three years following the daily routines of three registered nurses at Beth Israel Hospital in Boston. She brings us into the lives of patients with complex, debilitating, life-threatening and fatal conditions; she shows us the best of nursing- knowledgeable, empathie, sensitive, conscientious. She begins with her own awakening to the good in nursing, through her experience giving birth to her first child:
My nurses were the ones who furnished the confidence a 39-year-old professional with no brothers or sisters, nieces or nephews, no experience at all with babies, needed to begin her career as a mother. Their most invaluable aid came in the form of education. They helped me learn that I could actually be a mother to this fragile life suddenly entrusted to me. I remember watching one nurse bathe my child, burp her, diaper and swaddle her. It was comforting to realize that what to me was a terrifying prospect was to her an everyday experience. I could never have learned all that they taught me through the impersonal techniques that have become so popular today as hospitals, insurers, and employers cheat new mothers and newborns of nursing care. Bathing or diapering a plastic doll would not have helped me. Nor would I have benefited from watching a video of some anonymous nurse caring for someone else's equally anonymous infant. After all, I wasn't afraid of dropping a doll or someone else's baby. I was afraid of dropping my own (Gordon, 1997, pp. x-xi).
What Gordon experienced here is nursing at its best. It is the nursing care we find so difficult to describe and defend. But we can no longer sit in silence as the possibility for nursing at its best is systematically unraveled. We can reweave the tapestry of care and we must. Quoting Gordon again:
Nurses teach us the true meaning of life support. They teach us not only the value of cure but of care. They teach us about the possibilities of modern medicine and about its limitations. To listen to nurses, as we must do today, is to understand the essence of health care. To defend nursing, as we must do today, is to protect not only a particular profession, but to protect ourselves. We look to technology and medicine to prevail over disease and death. But I have become convinced that the only victories we can win over our vulnerability and mortality are those of the human spirit and human community. Nurses and the patient relationships they forge create that kind of community. They not only help us to heal, they embody the more powerful and enduring victory of care (Gordon, 1997, p. 308).
Gordon argues convincingly that in for-profit health care, the tapestry of care will continue to unravel. A staunch capitalist would argue that free-market competition will eventually affect not only cost containment (and hence profits), but should improve quality. But health care is not a free-market commodity; the consumers of health care are not the purchasers of health plans and services. Clearly, a coherent and sensible means of financing health must be found; of the models that have been tried in other industrialized nations, single-payer systems are leaders in providing quality care across the whole continuum of care.
I invite you to join Suzanne Gordon, myself and several other nurses who are committed to promoting a more rational system of health care and health care financing. The Nurses' Network for National Health Plan is a group dedicated to public education about what they should expect in their health care, and to provide grass roots support for a national health plan.*
- ANA. (1995). Summary of the Lewin-VHI, Inc. Report: Nursing Report Card for Acute Care Settings. Washington, D.C.: Author.
- Buerhaus, P.I., & Staiger, D.O. (1996). Managed care and the nurse workforce. Journal of the American Medical Association, 276(18), 1487-1493.
- Farwell, B. (1996). Health care in America: An intimate glimpse. Annals of Internal Medicine, 125(12), 1005-1006
- Gordon, S. (1997). Life support: Three nurses on the front lines. New York, NY: Little Brown.
- Lagnado, L. (1997, January 28). "Patients give hospital poor score care." The Wall Street Journal. New York, NY: Dow Jones & Company.
- Shindul-Rothschild, J., Berry, D., & Long-Middleton, E. (1996). Where have all the nurses gone? Final results of our patient care survey. American Journal of Nursing, 96(11), 25-39.
- Wros, P.L. (1993). Behind the curtain: Nursing care of dying patients in critical care. Unpublished doctoral dissertation, Oregon Health Sciences University, Portland, OR.
- Wunderlich, G.S., Sloan, F.A., & Davis, D.K. (Eds.). (1996). Nursing staff in hospitals and nursing homes. Is it adequate? Washington, D. C: National Academy Press.