Theory of Personal Preservation

Prior research has shown that only a minority of patients in kidney failure who require hemodialysis communicate their preferences to health care professionals. 1,2 This study aimed to increase understanding of how people in kidney failure undergoing hemodialysis at three clinics in Texas make decisions regarding life-prolonging medical treatment (eg, cardiopulmonary resuscitation [CPR], mechanical ventilation).

Twenty hemodialysis patients who attended dialysis outpatient centers in central Texas, nine family members, and 16 health care providers involved in these patients' lives were theoretically sampled to discuss end-of-life treatment plans and the use of advance directives (ie, living will and durable power of attorney for health care). Initial interviews with the first 12 patients were audiotaped and transcribed and detailed field notes were maintained on all interviews and observations. Transcript and field note data were analyzed using grounded theory research techniques. 3,4 As data were collected, they were constantly compared until no new data emanated. Several concepts and their relationships to one another emerged during early stages of transcript and field note data analysis. Further analysis yielded more precise concept labels with better concept integration. The resultant theory is summarized in the following paragraphs.

After patients are diagnosed with end-stage renal disease (ESRD), they often experience various degrees of depression as they begin dialysis; however, they know their odds for survival. They realize they have a disease that will significantly affect their lives, health, and longevity. Their personal knowledge and beliefs begin to interact in a way that defines their individuality as people receiving hemodialysis, hence the next phase of the process toward personal preservation: defining individualism. When faced with daily medical treatment decisions and further decisions such as end-of-life treatment, patients move into the final phase of personal preservation, which is an interactive paradox of being responsible and taking chances.

The theory of personal preservation furthers understanding of illness behavior and patients' end-of-life decision-making process. This theory could be used to sensitize health care professionals to patients' desires and enhance patient-professional communication. Its concepts are in line with the position statement of the American Academy of Hospice and Palliative Medicine, 5 which states that a chief aim of end-of-life care must be "upholding respect for patients' and families' values."

The Patient Self-Determination Act of 1990 6 requires acute care facilities that receive Medicare and Medicaid reimbursement to provide adult patients written information about their rights to accept or refuse medical treatment and to execute advance directives. Further, the Renal Physicians Association and American Society of Nephrology 7 provide clinical practice guidelines for end-of-life decision-making in the ESRD patient population that specifically recommend the implementation of advance directives by all dialysis patients. The theory of personal preservation may serve as theoretical underpinnings for these guidelines, while also informing future revisions to address the delicate interdisciplinary process involved in end-of-life decision making.

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