Decision making during serious illness: what role do patients really want to play?

Two surveys were conducted to determine what roles people actually want to assume in selecting cancer treatments. 436 newly diagnosed cancer patients and 482 members of the general public participated. Preferences were elicited using two card sort procedures, each of which described five potential roles in decision making. Findings suggested that the impact of being diagnosed with a life-threatening illness may influence preferences to participate. The majority (59%) of patients wanted physicians to make treatment decisions on their behalf, but 64% of the public thought they would want to select their own treatment if they developed cancer. Most patients (51%) and members of the public (46%) wanted their physician and family to share responsibility for decision making if they were too ill to participate. Sociodemographic variables accounted for only 15% of variance in preferences. These variables are not particularly useful in making predictions about which groups want more or less active roles in medical decision making.

Symptom distress in newly diagnosed ambulatory cancer patients and as a predictor of survival in lung cancer.

Levels of symptom distress are most often measured in a clinical trial context rather than in general ambulatory populations. The purpose of this paper is to report levels of symptom distress in such a population, and to describe the factors associated with this distress. Over a 6-month period, a consecutive sample of 434 newly diagnosed patients, including 82 patients with lung cancer, were tested with the symptom distress scale at two tertiary oncology clinics serving the population of one Canadian prairie province. While levels of symptom distress in this population were generally low, the most problematic symptoms for patients were fatigue and insomnia, with 40% and 30% having moderate or high scores on these symptoms, respectively. Patients with advanced disease reported more distress than those with early stage disease; women reported more distress than men; older patients had less distress than younger patients; distress was highest in lung cancer patients and lowest in men with genitourinary cancers. Consistent with the findings of four previous studies, the single measure of symptom distress was a significant predictor of survival in lung cancer patients, with the exception of three patients who had substantial post-thoracotomy symptoms.

Relationship between preferences for decisional control and illness information among women with breast cancer: a quantitative and qualitative analysis.

This study examined relationships between cancer patients' preferences for involvement in making treatment decisions and preferences for information about diagnosis, treatment, side effects, and prognosis. Participants were 35 women with stage I and II breast cancer recruited from two medical oncology and radiation oncology clinics. Following administration of card sort measures of preference for involvement in treatment decision making and information needs, a semi-structured interview was conducted to provide patients with an opportunity to elaborate on their role preferences and health care experiences. Results showed that patients who desired an active role in treatment decision making also desired detailed information. This relationship was not as clear for passive patients. Relative to passive patients, active patients desired significantly more detailed explanations of their diagnosis, treatment alternatives, and treatment procedures. Active patients also preferred that their physicians use the words 'cancer' or 'malignancy' when referring to their illness while passive patients preferred that their physicians use a eupheumism. Further research is needed to critically detail the advantages and disadvantages of the active and passive roles and their impact on disease progression and psychological well-being.

Information and patient participation in screening for prostate cancer.

The purpose of this study was to determine if providing men with information about screening for prostate cancer would enable them to assume a more active role in decision making with their family physician, and lower levels of anxiety and decisional conflict. Men were recruited from one family medical clinic in Winnipeg, Manitoba. One hundred men scheduled for a periodic health examination (PHE) were randomly assigned to receive verbal and written information either prior to the PHE, or following the second interview. Men completed measures of preferred decisional role and anxiety prior to the PHE; and assumed decisional role, decisional conflict, and anxiety post PHE. Results demonstrated that men who received the information prior to the PHE assumed a significantly more active role in making a screening decision, and had lower levels of decisional conflict post PHE. The two groups did not differ with regard to levels of state anxiety. Providing men with information enables them to make informed screening decisions with their family physicians.

Empowerment of men newly diagnosed with prostate cancer.

The purpose of this study was to explore the hypothesis that assisting men with prostate cancer to obtain information would enable them to assume a more active role in treatment decision making and decrease their levels of anxiety and depression. Respondents were recruited from one community urology clinic in Winnipeg, Manitoba. Sixty newly diagnosed men were randomly assigned to receive either a self-efficacy information intervention that consisted of a written information package with discussion, a list of questions they could ask their physician, and an audiotape of the medical consultation (n = 30), or a written information package alone (n = 30). Men completed measures of preferred decisional role as the pretest; anxiety and depression before the intervention, and at 6 weeks post-intervention; and assumed decisional role at 6 weeks post-intervention. Results demonstrated that men in the intervention group assumed a significantly more active role in treatment decision making, and had lower state anxiety levels at 6 weeks. Levels of depression were similar for both groups at 6 weeks. This group of older men do want to be informed and participate in medical decisions. Further efforts are required to evaluate the efficacy of such an intervention in other community urology clinics.

Information needs, uncertainty, and anxiety in women who had a breast biopsy with benign outcome.

A retrospective, descriptive study to determine the information needs of women who underwent a breast biopsy with a benign outcome and to ascertain the levels of uncertainty and anxiety they experienced was conducted in two community health care sites in Winnipeg, Manitoba. A sample of 70 women completed a four-part survey after learning the benign breast biopsy diagnosis. The survey consisted of an Information Needs Questionnaire, Mishel Uncertainty in Illness Scale--Community Form, State-Trait Anxiety Inventory, and a Demographic Questionnaire. Before the study, nine information needs were identified in a focus group composed of women (n = 9) who had a benign breast biopsy. The nine information needs were arranged in 36 pairs in the Information Needs Questionnaire. Profiles of information needs were developed through Statistical Analysis Systems analysis using Thurstone's Law of Comparative Judgement--Case V. The most important information need of women who underwent a benign breast biopsy was knowing when they would learn the diagnosis. The next four information needs were categorized as information about the risks of developing breast cancer. Information about follow-up and diagnostic tests were less important than information about the threat of breast cancer. Women experienced heightened uncertainty and anxiety levels related to the benign breast biopsy experience. Profiles of information needs were developed for women experiencing various levels of uncertainty and anxiety, women of different age groups, and women who experienced with a loved one with breast cancer.

Information, support, and communication needs of women with a family history of breast cancer.

In this article, the role of information, support, and communication in promoting adaptation to the risk of breast cancer is reported. These variables emerged from an in-depth study of women at risk for breast cancer because of breast cancer in one or more of their primary (first degree) relatives. Fifty-five women with mothers, sisters, mother and sister, or mother and another primary relative were interviewed using in-depth semi-structured, tape-recorded interviews. After transcription, data were analyzed using qualitative analysis procedures. A three-phase process of adaptation to the risk of breast cancer was uncovered, which was subsequently validated with two study participants. Information, support, and communication emerged as important factors in facilitating the adjustment of women throughout the three phases of the process: as women "lived" the breast cancer experience of their relative; as they developed a perception of their personal risk for breast cancer; and finally as they put the risk of breast cancer "in its place." Despite the importance of information and support, most women had difficulty meeting these needs. Also, communication patterns both within the family and with health professionals were generally not helpful for these women. Issues related to the ill relative as "manager" of cancer-related information, the "ownership style" of the woman at risk, and the accessibility and availability of resources influenced women's adaptation to feelings of risk. Women's needs for information, support, and communication and facilitating factors are described in detail, and recommendations for clinical practice and research offered.

Measuring symptom distress in patients with lung cancer. A pilot study of experienced intensity and importance of symptoms.

Patients with cancer experience high levels of symptom distress. Current measures of symptoms generally weight the importance of each symptom equally, and do not generally address the relative importance of different symptoms to patients. The purpose of this pilot study was to explore whether the assumption of equal weighting is warranted in measurements of symptom distress. Consecutive patients presenting with primary lung cancer at the Lung Medicine Unit of one Swedish hospital completed the Symptom Distress Scale and a Thurstone scale eliciting patients' weightings of the symptoms' relative importance three times: after first contact with the unit, then 1 and 2 months later. The results show that subjects weighted some symptoms as significantly more important than others, and the ordering of symptoms was found to differ by intensity and perceived importance in this group. Outlook was the symptom rated most important at T1. Fatigue received the highest intensity score, but ranked second lowest in importance. Kendall's coefficient showed minimal agreement among these patients as to the specific order for the weighting of the importance of symptoms. In addition to theoretical relevance, this issue is clinically relevant in selecting symptoms that should be the focus of intervention and in determining how the success of interventions should be judged.

Critical nursing behaviors in care for the dying.

A beginning list of seven critical nursing behaviors in care for the dying was identified in a qualitative study. Ten experienced palliative care nurses and 10 nurse educators were asked to describe situations in which a student or graduate nurse had displayed very positive or very negative attitudes to care for the dying. Behaviors identified after content analysis of transcribed interviews were responding during death scene, providing comfort, responding to anger, enhancing personal growth, responding to colleagues, enhancing quality of life during dying, and responding to the family. Three of these behaviors were not well described in the nursing literature.

Treatment decision making in women newly diagnosed with breast cancer.

The purpose of this study was to explore the hypothesis that women with breast cancer had specific preferences about the degree of control they wanted over treatment decision making. One hundred fifty women, newly diagnosed with breast cancer, were interviewed and their preferences for participation in treatment decision making were established using a measurement tool designed to elicit decision-making preferences (Degner LF, Sloan JF. Decision making during serious illness: What role do patients really want to play? J Clin Epidemiol 1992;45:944-50). Two hundred women with benign breast disease served as a descriptive comparison group. Unfolding theory (Coombs CH. A theory of data. New York: John Wiley & Sons, 1964) provided a means of analyzing the data so that the degree of control preferred by each woman could be established. The majority of the newly diagnosed women preferred to play a passive role in treatment decision making, leaving the decision-making responsibility to their physician, whereas the benign control group preferred a collaborative role in which joint decisions could be made between the patient and the physician. The implications of the results for patient participation are discussed.

Expert nursing behaviors in care of the dying adult in the intensive care unit.

OBJECTIVE: To identify expert nursing behaviors in care of the dying adult in the intensive care unit. DESIGN: Descriptive, exploratory. SETTING: One tertiary care hospital surgical intensive care unit and one community hospital medical-surgical intensive care unit in a western Canadian city. SUBJECTS: Ten intensive care nurses nominated as experts in the care of dying adults by their peers. RESULTS: Behaviors identified after constant comparative content analysis of transcribed interviews with nurse experts included: responding after death has occurred; responding to the family; responding to anger; responding to colleagues; providing comfort care; and enhancing personal growth. CONCLUSIONS: The identification and description of specific nursing interventions in care of the dying are imperative to demonstrate to practicing clinicians that a clearly defined role exists for them in the delivery of terminal care.

Information needs, sources of information, and decisional roles in women with breast cancer.

PURPOSE: To describe preferred and actual roles in treatment decision making among women with newly diagnosed breast cancer, to describe their sources of information, and to identify and prioritize their information needs. DESIGN: Cross-sectional survey. SAMPLE: Seventy-four women recently diagnosed with breast cancer. SETTING: Two tertiary, outpatient oncology clinics in Winnipeg, Manitoba, Canada. METHODS: Three measures were completed: control preferences card sort, Thurstone scaling of information needs, and ranking of information sources. MAIN RESEARCH VARIABLES: Decisional roles, sources of information, and information needs. FINDINGS: More women (43%) preferred and more (57%) actually assumed a passive role in treatment decision making. This is particularly true of older women. Although 37% of women preferred a collaborative role, only 19% were able to assume such a role. The women preferred personal sources of information (physician, nurse, friend, or relative) over written sources. A medical journal was more relevant to women with higher levels of education. Most information needs included stage of disease, likelihood of cure, and treatment options. The women ranked self-care issues and sexuality as least important; older women, however, ranked self-care issues as more important. CONCLUSIONS: Women who want collaborative roles in decision making may experience difficulty in achieving such roles. Personal sources of information were more important to women than written sources. IMPLICATIONS FOR NURSING PRACTICE: Nurses can use a knowledge of women's priorities for information to guide information sharing. Nurses can assess women's desired roles in treatment decision making and facilitate women achieving their preferred roles.

Information and decision-making preferences of men with prostate cancer.

PURPOSE/OBJECTIVES: To determine whether a relationship exists between preferences for involvement in decision making and type of information in patients with cancer. DESIGN: Survey, correlational. SETTING: Community urology clinic in Winnipeg, Manitoba, Canada. SAMPLE: Convenience sample of 57 men (mean age of 71 years). METHODS: Subjects completed a card sort to elicit their preferred role in treatment decision making. A two-part questionnaire measured the type and amount of information preferred. FINDINGS: The majority (57.9%) of men preferred a passive decision-making role. Information on disease advancement, likelihood of cure, and types of treatment available were the three preferred categories of information. Men in the collaborative group and those who wanted their physician to make treatment decisions-only after seriously considering their opinions-also wanted significantly more information in these three categories. Married men ranked self-care information as significantly less important than did single men. Information preferences were similar regardless of preferred decision-making role. CONCLUSIONS: Although the majority of men in this sample wanted their physician to make final treatment decisions, they did want to be informed. Information preferences were similar to other groups of patients with cancer. Future clinical studies are required to determine if providing these men with more information will enable them to assume a more active decision-making role. IMPLICATIONS FOR NURSING PRACTICE: Given the small variance in decision-making and information preferences accounted for by sociodemographic and treatment/disease-related factors, individual assessment of these preferences remains the best clinical approach.

A nursing intervention strategy to foster patient involvement in treatment decisions.

This article describes an intervention strategy designed to provide decisional support for patients with cancer who want to participate in medical-treatment decisions. This strategy is based on the concepts of commitment and control and on a simple technique for determining the degree of involvement the patient desires. It has been tested on women with a confirmed diagnosis of breast or gynecologic cancer and on women referred for a second opinion and diagnostic workup for suspicious lesions. The emphasis is on the patient's agenda, including assessing to what extent she wants to participate, helping her to identify questions, and supporting her in obtaining the information she wants and needs. The strategy has been incorporated successfully into a busy oncology clinic schedule. The next challenge is to conduct research to evaluate the effect of providing decisional support on quality of life.

Promoting patient decision making in life-and-death situations.

OBJECTIVES: To review factors in the health care culture that deny seriously ill patients' last wishes regarding care. DATA SOURCES: Review articles and research studies that pertain to decision making. CONCLUSIONS: Decision making in palliative care has been identified as an understudied area. Although there are significant benefits to being involved in treatment decision making, long-term follow-up of the consequences of active participation in the final stages of life is lacking. IMPLICATIONS FOR NURSING PRACTICE: Nurses have a role to play in assisting patients and their families in treatment decision making in both the curative and palliative phase of care. A nursing intervention to promote patient involvement in decision making is described.

The Control Preferences Scale.

The Control Preferences Scale (CPS) was developed to measure a construct that emerged from a grounded theory of how treatment decisions are made among people with life-threatening illnesses. The control preferences construct is defined as "the degree of control an individual wants to assume when decisions are being made about medical treatment." The CPS consists of five cards that each portrays a different role in treatment decision-making using a statement and a cartoon. These roles range from the individual making the treatment decisions, through the individual making the decisions jointly with the physician, to the physician making the decisions. The CPS involves subjects in making a series of paired comparisons to provide their total preference order over the five cards. These preference orders are analyzed using unfolding theory to determine the distribution of preferences in different populations and the effect of covariates on consumer preferences. The scale has been tested in a variety of populations, ranging from the general public to highly stressed groups. The CPS has proven to be a clinically relevant, easily administered, valid, and reliable measure of preferred roles in health-care decision-making.

Measuring the care needs of mothers of children with cancer: development of the FIN-PED.

This 2-phase study tested the Family Inventory of Needs-Pediatrics (FIN-PED), a 52-item instrument structured to include 2 subscales, the first measuring the importance of care needs and the second measuring the extent to which needs were met. In Phase I, an expert panel of 6 mothers of children with cancer rated the tool for clarity, apparent internal consistency, and content validity. All items met preset criteria for these assessments. In Phase II, 110 mothers rated the instrument for internal consistency reliability, stability over time, and internal construct validity. Both subscales achieved an estimated internal consistency of 0.94. Evidence of the instrument's stability over time was also achieved. Factor analysis resulted in 4 interpretable factors, suggesting that the tool is multidimensional.

Delirium in the terminally-ill cancer patient: aetiology, symptoms and management.

Delirium is a frequent and serious clinical problem in the terminally ill cancer patient. Multiple dimensions of delirium make definition, measurement, and assessment of it challenging in clinical nursing practice. Assessment and management of delirium requires knowledge of the diagnostic criteria for it, aetiology, signs and symptoms, and nursing interventions. Four delirium assessment scales determined to be useful in assessing patients with terminal illness are reviewed. The use of a delirium assessment instrument in routine nursing assessments would be important for the nurse's early detection of delirium so that interventions to reverse the causes of delirium could immediately be implemented.

Determining the information needs of women after breast biopsy procedures.

A focus group research study was conducted at a Canadian community hospital breast clinic to determine information needs of women who had experienced surgical breast biopsy procedures with benign results. Nine breast clinic patients who had benign breast biopsy results provided the researcher with findings related to this experience. The patients determined what they believed were the nine most important information needs during the diagnostic phase of a breast lump evaluation. These information needs emerged from the types of benign breast disease, the meaning of risk associated with benign breast disease developing into breast cancer, and the tests required to diagnose and treat benign breast disease. Perioperative nurses can use this information to plan and assess the care provided to women undergoing breast biopsy procedures.

Validity and reliability of the family inventory of needs (FIN): measuring the care needs of families of advanced cancer patients.

Two studies balanced qualitative and quantitative data to provide evidence of satisfactory validity and reliability of the Family Inventory of Needs (FIN). The FIN is designed to measure the importance of care needs of families of advanced cancer patients (FIN-Importance of Care Needs subscale) and the extent to which families perceive that their care needs have been met (FIN-Fulfillment of Care Needs subscale). The first study involved development of the instrument and testing for clarity, apparent internal consistency (non-quantitative assessment of homogeneity of content), and content validity using a panel of six experts (family members of advanced cancer patients). The FIN met or exceeded the preset criteria specified used in this phase of testing. The second study of the project used 109 family members of advanced cancer patients from three hospice programs to test the FIN for internal consistency and construct validity. Internal consistency of the FIN-Importance of Care Needs subscale as measured by Cronbach's alpha coefficient was .83 without redundancy. Construct analysis was assessed using factor analysis techniques. An inability to extract a substantively meaningful minimum number of factors, together with the fact that a theta reliability coefficient of .85 was obtained (only .02 higher than the alpha coefficient), suggested that the items were parallel supporting the conclusion that the subscale is unidimensional. Support for the construct validity of the FIN-Importance of Care Needs subscale was also obtained using predictive modeling. The internal structure of the FIN-Fulfillment of Care Needs subscale was assessed using cluster analysis. Results suggested that the subscale is a unidimensional one. Overall, the FIN met the preset reliability and validity criteria providing promising evidence for the instrument's sound psychometric properties for use in research and clinical settings.