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PubMed2001

The 2000 Helene Hudson Memorial Lecture. Decisional role in seriously ill hospitalized patients near the end of life: the patient's and provider's perspective.

Decisions about whether or not to implement life-sustaining therapies are complex and are becoming more so as the ability to prolong life with advanced technologies and care increases. The objectives of this study were: (1) to determine seriously ill hospitalized patients' preferences for decisional role with respect to decisions about life-sustaining treatments, and (2) to determine if providers were aware of patients' preferences. This prospective, descriptive pilot study was conducted at an Ontario teaching hospital. One hundred and seventeen seriously ill adult patients admitted with cancer and non-cancerous conditions participated in a structured interview. Fifty-three nurses and 63 physicians responsible for the care of the participating patients also participated. Patients and providers were asked similar questions about end-of-life discussions and preference for decisional responsibility for life-sustaining treatments. Most patients (n = 89, 77%) had thought about end-of-life issues and were willing to discuss these with their physicians and nurses, but few (n = 37, 37%) reported such discussions. Preferences for decisional role varied; most indicated a preference for a shared role (n = 80, 80%) and there were no differences in patients with or without cancer. Generally, both physicians and nurses were not aware of or did not determine accurately patient preferences for decisional role. The findings from this study show that seriously ill hospitalized patients have thought about and are willing to share in discussions about end-of-life care with their providers, yet many have not.

Cross-Sectional Studies↗
PubMed2003

The 2002 Schering Lecture. Children's cancer symptom experiences: keeping the spirit alive in children and their families.

Despite the finding that each child and family experienced cancer in their own unique way, they all shared the need to maintain a sense of spirit. Just as the suffering united the families, so too did their sense of spirit. Talk of the spirit is not foreign in the pediatric oncology literature. Statements such as "the children's responses suggest a resolute spirit that accepts cancer and goes on with life" (Hockenberry-Eaton & Minick, 1994, p.1030) are dispersed throughout the literature and reinforce the importance of the spirit in children and families experiencing childhood cancer. Yet despite this, the spirit in children with cancer has received minimal attention from researchers (Woodgate, 2001). The focus has been solely directed at studying the sense of self in children. In fact, some would even argue that the spirit can be equated with one's sense of self. There is also the feeling that the spirit is something that does not exist. How could it be "real" when it has never been seen or even measured in research? However, just because something cannot be seen or measured, does not mean that it does not exist. As was revealed by the families participating in my study, there was a spirit within them that got them through the cancer experience, especially during times of increased symptom distress. Research that seeks to describe the "spirit within" of children and families who are going through many of life's challenges is warranted. This includes understanding the conceptualization of the spirit from the perspectives of children experiencing illness. Although understanding spirituality and spiritual distress is beginning to be studied in children experiencing illness (Pehler, 1997), children's perspectives are usually not accessed. By developing a deeper understanding of the "spirit within," oncology nurses and other professionals caring for children with cancer may be able to provide more sensitive and comprehensive care. They will have a better understanding to nursing the spirit. So to conclude, let us as oncology nurses continue to help families maintain their sense of spirit. And yes, let us maintain a sense of spirit within ourselves. We could learn from the families we care for with respect to how to nurture our spirits and the spirits of those close to us. Taking care, holding on to the belief, taking one day at a time, and so on, are all strategies that we could learn to incorporate more frequently into our daily lives. May a part of the spirits of those we care for be with us and live on in us forever, because their lingering spirits are sources of hope and strength, as this mother reinforced.

Attitude↗
PubMed1996

Second annual Helene Hudson Memorial Lecture. I am a nurse.

The focus of this study was an exploration of the nature of exceptionally competent oncology nursing practice. Through a combination of data gathering approaches--conversation, observation and narrative exchange--the beliefs, actions and effects of the actions of eight exemplary nurse informants were studied. Analysis revealed three themes related to the action of the exemplary nurses: Dialogue in silence, mutual touch and sharing the lighter side of life. Additional analysis led to a category called effects of nursing actions. Again, three themes were highlighted as effects: Affirmation of the nurse and patient, connecting and joint transcendence.

Health Knowledge, Attitudes, Practice↗
PubMed1997

The 1996 Schering Lecture. An inquiry into the experience of oncology patients who leave biomedicine to use alternate therapies.

Minimal attention has been given to the experiences of oncology patients who abandon biomedicine to use alternate therapies. This presentation explores the abandonment experience. It also examines this group's emotions, perceived stress, and coping strategies through stress theory. Congruent with past research these patients tend to be younger, attain higher education, and are interested in changing their health regimens. Analysis suggests that anger precipitates the abandonment and remains a residual force for these patients. While their expressed initial fear of cancer changes to hope with the use of an alternate therapy, the hope for cure seems to be carried to the extremes of illusion and denial of possible death. The study, conducted with a network sample, included individual interviews and a focus group. The value of this ethnography lies in the revelation that a) some similar experiences appear for patients who remain in biomedicine and patients who abandon biomedicine, and b) insights are provided for health professionals wishing to avoid situations of abandonment and wishing to facilitate estranged patients' return to biomedicine.

Adaptation, Psychological↗
PubMed1998

The 1997 Helene Hudson Memorial Lecture. Reaching to the depths of the soul: understanding and exploring meaning in illness.

The nurse who hopes to respond to the experience of individuals and their families with a diagnosis of cancer must understand and explore meaning in illness. Meaning has been described as a fundamental dimension of personhood (Cassel, 1982). There can be little understanding of the person's behaviour and responses to cancer without understanding the meaning of illness in their lives. The meaning ascribed to a situation can have a profound impact on the individual and family's coping and adjustment and may influence their relationships with the health care team. Meaning in illness may be influenced by cultural beliefs, religion, values, life philosophy and past experience. Meaning goes beyond the surface reactions of the individual to the very depths of the person's soul and can be a source of despair and suffering. Meaning evolve throughout the illness trajectory and can have a profound influence on the person's lived experience. The skills required to understand meaning and the lived experience of illness for the individual are extensive. It is only through true presence, mutual understanding and a sharing of the life of the other that nurses are able to understand and co-construct meaning. It is a respect and understanding of the individual within the whole context of their personhood and the meanings assigned to their experience of cancer which allows the nurse to practice beyond the surface, to touch the person's soul.

Adaptation, Psychological↗
PubMed1998

The 1997 Schering Lecture. Quality of life in oncology: nurses' perceptions, values and behaviours.

Quality of life is an important dimension of cancer care. Yet, within our current environment of fiscal restraint, restructuring and cancer care system reform, pressures exist which may make it difficult to provide care which attends to issues of quality of life. Oncology nurses are key providers of cancer care and their perspectives on quality of life for cancer patients are very important. In addition, much of the satisfaction oncology nurses experience in their practice emerges from matters related to attending to quality of life issues. Are oncology nurses currently able to incorporate quality of life issues into their daily care of patients? How are they doing so? The purpose of this qualitative study is to identify major themes and dimensions of nurses' perceptions and values related to quality of life and create a profile of the oncology nurse's role in integrating quality of life in nursing practice. A total of 25 oncology nurses in regional cancer centres across Ontario were interviewed. Each semistructured interview was taperecorded and transcribed. Analysis was completed to identify the major themes and dimensions. This presentation will report the findings from the study and will focus on understanding the existing values oncology nurses hold surrounding quality of life, how quality of life is conceptualized, and the patterns of practice and decision-making regarding quality of life.

Attitude of Health Personnel↗
PubMed1997

Chronic myelogenous leukemia--progress at the M. D. Anderson Cancer Center over the past two decades and future directions: first Emil J Freireich Award Lecture.

The purpose of this study was to review the progress in clinical and translational research in chronic myelogenous leukemia (CML) over the past 20 years at M.D. Anderson Cancer Center. The CML database updating the clinical and basic research investigations was reviewed as the source of this report. Publications resulting from these investigations were summarized. The long-term results with intensive chemotherapy, IFN-alpha therapy alone or in combination, autologous stem cell transplantation, and new agents such as homoharringtonine and decitabine showed encouraging results. Biological studies related to the BCR-ABL molecular abnormality, other molecular events, and the detection of minimal residual disease were detailed. Future strategies with potential promise in CML were outlined. Significant progress in understanding CML biology and in treating patients afflicted with the disease has occurred. Several therapeutic and research tools are currently investigated, which should hopefully improve further the prognosis of patients with CML.

Antineoplastic Agents↗