Thomas R. Taylor

Issues in end-of-life care: patient, caregiver, and clinician perceptions.

CONTEXT Review of published research indicates the need to better incorporate patient and caregiver perceptions when providing end-of-life (EOL) care. Although considerable research regarding patient and caregiver experience of EOL has been done, little research has studied patients, caregivers, and clinicians as a connected system. OBJECTIVE To study the perceptions of patients, caregivers, and physicians who are already connected with one another in an EOL care experience. DESIGN Qualitative study consisting of in-depth, open-ended, face-to-face interviews and content analysis. SETTING Community family practice residency programs in rural and urban settings in the Affiliated Family Practice Residency Network of the Department of Family Medicine, University of Washington School of Medicine. PARTICIPANTS Forty-two patients and 39 caregivers facing EOL were interviewed either alone or together after referral by their physicians. Additionally, results of previously published findings from interviews with 39 family practice faculty were included. OUTCOME MEASURES Perceptions of participants on EOL issues. RESULTS Participants identified four primary issues related to their experience of EOL care: awareness of impending death, management/coping with daily living while attempting to maintain the management regimen, relationship fluctuations, and the personal experiences associated with facing EOL. Participants expected their physicians to be competent and to provide a caring relationship. CONCLUSIONS Awareness of these crucial patient and caregiver EOL issues and expectations and how they differ from clinician perspectives can assist clinicians to appropriately explore and address patient/caregiver concerns and thereby provide better quality EOL care.

Deciding about hormone therapy: validation of a model.

ObjectiveThe purposes of this study were to (1) validate components of a decision process regarding adoption of hormone therapy and (2) compare the decision processes women used with respect to their evaluation of decision quality. DesignA sample of women participating in a population-based study of midlife womens health participated in individual in-depth interviews. ResultsContent analysis of 30 recorded interviews provided evidence that each component of the decision process (precontemplation, contemplation, commitment, critical evaluation, and continuance) was replicated. Few additional codes were identified, and these could be subsumed under the phases of the original decision model. ConclusionsWomens self-reported statuses on a screening questionnaire corresponded to the stages of the decision model coded from their interviews. What women actually decided to do (use hormone therapy or something else) was not associated with their decision process. Satisfaction with the decision, uncertainty about the decision, and other factors related to the decision were independent of the decision phases.

Changes in cognitive and social functioning of diabetic patients following initiation of insulin infusion therapy

Functional health outcomes resulting from intensive insulin regimens may differ depending upon the age of the diabetic patient. This study tested the hypothesis that health functioning is poorer for younger insulin-dependent diabetic (IDDM) patients following a change to the insulin infusion pump regimen, with progressive improvements occurring in functional health status at higher age levels. Thirty IDDM patients aged 10-47 years were administered health status instruments prior to changing to the new regimen, and again six months later. The instruments assessed physical, cognitive, psychological, and social health functioning. When compared at six months to an age-matched control group on conventional insulin therapy, declines in social activities were found for younger insulin pump patients, with improvements occurring linearly as age increased. Lower performance levels were also found for the younger patients in Conceptual Quotient (CQ), an indicator of cognitive functional status, with progressive improvements with age through the early 30s. However, corresponding declines in function occurred at the oldest age levels. Adaptation to an intensive diabetes regimen appears to be more difficult at younger and older age levels.

Deciding about using hormone therapy for prevention of diseases of advanced age

The purpose of this study was to examine the decision processes in which women engage as they commit to use, and continue to use, postmenopausal hormone therapy and to consider the implications of these decision processes for health care. Data were collected from midlife women in a series of six focus groups encompassing multiple ethnic and social groups. Focus group transcripts were analyzed for themes reflecting components of womens decision processes and decision patterns, and points at which health care providers were involved were identified. Participants identified five phases of a decision process: precontemplation, contemplation, commitment, critical evaluation, and continuance of therapy. Health care providers have significant opportunities to interact with women during the transitions between these phases; hence these interactions need to be synchronized with womens decision processes and need to address affective as well as cognitive processes.

The relationship of family dynamics/social support to patient functioning in IDDM patients on intensive insulin therapy

A 6 month pilot study was conducted to examine the relationship between family dynamics/social support and patient functioning in diabetic patients on intensive insulin therapy. Intensified therapy was associated with improvements in the DUHP symptom score, MHI psychological well-being score, and in the DUHP social functioning score. In diabetic patients, regardless of therapy, extreme family dynamics were correlated with higher DUHP symptom scores and lower MHI psychological well-being scores at the initial measurement time. However, over the 6 month study period, extreme family dynamics were predictive of improvements in the DUHP symptoms score and in the quality of friendships in diabetic patients on intensive insuline therapy. In diabetic patients, regardless of therapy, higher levels of social support correlated with higher levels of psychological and social functioning at the initial measurement time, and with improvements in quality of family life over the 6 month measurement time. Higher social support was also associated with improvements in quantity of friends and the DUHP social functioning score in diabetic patients on intensive insulin therapy. The study also generated empiric support for co-evolutionary models of disease states/family dynamics/treatment systems by showing that 6 month changes in family dynamics were predicted by the initial FACES adaptability measure and the initial mean monthly glucose value. Intensified therapy predicted lower family cohesion and more family rigidity over the 6 month study period. These findings also suggest, when combined with the result that diabetic patients from more cohesive families experienced a rise in monthly mean glucose values, that some diabetic patients may become trapped in a vicious cycle which perpetuates poor glucose control and extreme family dynamics.

Developing a Unitary Model of the Clinical Management Process

To date, in studies of clinical decision-making, most emphasis has been on the problem-solving/diagnostic phase of hospital-based practice assuming a strictly biomedical view of disease and illness. For the primary care physician a much broader biopsychosocial view of clinical decision-making is needed to cope with the early and ill-defined versions of disease and illness which we encounter and to take account of the overwhelming importance of management decision-making in primary care settings.