Erica Perry

Dialysis staff influence patients in formulating their advance directives

Patients on chronic dialysis were surveyed to determine the degree to which completion of advance directives (ADs) was influenced by personal factors that patients bring to their dialysis situation (eg, demographic characteristics or personal preferences) and by environmental factors that are not under their control (eg, interaction with dialysis staff or hospital system). Of the 113 questionnaires distributed to the population of 40 hemodialysis and 73 peritoneal dialysis patients, 90 (80%) were completed. Although only 17% of the respondents had actually completed written ADs previously, respondents seemed to have a good general understanding of ADs, as evidenced by the 80% overall accuracy on a 19-question portion of the survey that tested knowledge regarding ADs. While a few personal factors, such as gender, dialysis, modality, perceived quality of life, and attitude toward death, were associated with completion of ADs, most other demographic variables, including age, marital status, religion, work status, number of years of education, disability status, locus of control, renal diagnosis, and number of years on dialysis, were not correlated. More prominently correlated with completion of ADs were environmental factors, such as having dialysis staff discuss ADs with patients, patients being asked to complete ADs at the time of hospitalization, and perception of staff as being comfortable discussing ADs with patients. The overall results of the survey suggest that discussing ADs as an ongoing activity may have been positively influenced by the Federal Patient Self-Determination Act of 1991.(ABSTRACT TRUNCATED AT 250 WORDS)

Peer Resource Consulting: Redesigning a New Future

The current case describes a young woman with diabetes mellitus who developed end-stage renal disease (ESRD) and many other devastating complications related to her primary illness. Her experience illustrates many ways in which complicated illness can interrupt lifes plans, dashing any dreams that she or her family might have for the future. Yet her story also illustrates the important role that a trained Peer Resource Consultant (PRC) can play in helping to better understand chronic illness, face and grieve losses, and even design new plans and create new dreams for the future. The discussion that follows includes several perspectives that offer poignant insight into the difficult situations characterized by the young diabetic with ESRD.

The Option to Withdraw From Chronic Dialysis Treatment

This multidisciplinary discussion focuses on the case of a young diabetic woman who chose to stop chronic hemodialysis during a long and complicated illness. The perspective presented here include an academic lawyers view of such medical decisions; a hospital chaplains view of the religious framework for end-of-life situations; a clinical psychiatrists considerations when consulted to evaluate patients in such straits; a transplant nurses view of the opportunities for personal interaction that such clinical situations present; and a renal social workers approach to chronic illness, advance directives, and death in the dialysis patient population. The discussion is intended to address objectively some important issues associated with death in this population, aimed at increasing our willingness to discuss these issues more openly with patients and with our colleagues.

Breakdowns on the path of chronic illness: Opportunities for learning

An unusual case of calciphylaxis, presenting at the onset of end-stage renal disease and evolving into an extended and arduous hospital stay, is described. The medical approach to this case is addressed briefly, but the main focus of this paper is to describe, in the words of various participants, the events and interactions that occurred and to learn from this description how our management of such cases breaks down. When confronted by difficult circumstances, it is common for us to react emotionally in ways that are automatic and based on our own personal histories and behavior patterns. Such automatic reactions prevent us from seeing and understanding what we really need to know about a given situation and leave us vulnerable to discouragement and internal suffering when clinical events do not go well (A. Nierenberg, personal communication, April 1998). The result is often exasperation with patients and families, as well as emotionally laden interactions that do not forward problem solving. In retrospect, the appearance of such breakdowns is not only predictable in the course of chronic illness, but offers us the opportunity to observe our automatic reactions, to re-evaluate our approach, and to redesign our actions. We have written this review, not to find error or blame, but rather to emphasize that we are learning to view these breakdowns as signals first to step back from our automatic reactions and then to listen and communicate clearly as a means to navigating the best pathway through difficult and discouraging clinical challenges.