Promoting Excellence : ESRD Table of Contents : Quality of Dying Subgroup Methodology and Findings

Dimensions of Quality

The available literature that addresses the dimensions of quality of end-of-life experience and care, particularly from the perspectives of patients and families, is inadequate. Several studies that assign values to certain dimensions of dying seem to derive these standards from the perspectives of the clinicians and authors of the studies, and are thus limited and probably faulty.

The subgroup felt strongly that far more worthwhile benchmarks that would ultimately define protocols for care of dialysis patients should be derived from a clearer understanding of what patients and families themselves perceive as indicators of quality. Consequently, the subgroup opened discussions with Michael Perry and Susan Kannel of Lake Snell Perry & Associates, Inc., to pursue the possibility of conducting focus groups among dialysis patients as well as the families of dialysis patients who were deceased. After considerable exchange of ideas between members of the subgroup and the focus group moderators, a format for such groups was developed, and efforts were made to provide funding for the project. The Robert Wood Johnson Foundation was most generous in contributing toward some of the costs involved, as was the Missouri Kidney Program, in association with the University of Missouri at Columbia.

The subgroup wanted to hold focus groups in several diverse geographic locations in the United States in an attempt to have diverse populations represented. Focus groups were conducted in Missouri, North Carolina and Colorado, and a summary of the findings was prepared by Susan Kannel and Michael Perry of Lake Snell Perry & Associates (see below). Two focus groups were conducted in each location, one group of current patients, and the other of family members of deceased patients.

It is hoped that the data provided by these groups will serve as the nucleus of a clearer understanding of how patients and families view the process of dying with ESRD, as well as their expectations for care. Such information will fuel more appropriate and insightful research about the current state of affairs. It will also make a powerful contribution to the development of procedures for caring for terminally ill dialysis patients as it works to eliminate the obstacles of ignorance and supposition that now interfere with delivery of high quality care to ESRD patients in the final stages of their lives.

Advance Care Planning and DNR Orders

The subgroup was also aware of the inadequate state of advanced care planning among dialysis patients, which has been cited in several studies. A particular area that caught the interest of the subgroup was the potential obstacle to honoring advance directives, and particularly Do Not Resuscitate (DNR) orders, within the confines of dialysis units. When the subgroup attempted to review the policies of dialysis units and dialysis corporations with respect to honoring patients’ refusals of cardiopulmonary resuscitation, it became apparent that no consistent policy applied. More worrisome, policies of many units are either unclear on this point or prohibit honoring a legitimate DNR directive. Such prohibitions violate the principles of patient autonomy as well as those of beneficence and non-malfeasance. Many states have specific laws and statutes governing out-of-hospital DNR orders, and it was apparent to the subgroup that the policies of many dialysis units did not comply with such statutes. Thus, in addition to the moral and ethical considerations, an institutional policy obstacle was identified that inhibits delivery of optimal care through the end of life in dialysis care settings.

In response to this issue, the subgroup formulated a model policy statement for dialysis unit DNR orders, as well as a proposed model procedure that could be incorporated into the practices of dialysis units. The subgroup intends to publish this policy statement along with a review article detailing the dimensions of the DNR issue, in a major nephrologic journal in the near future. In this manner, the subgroup hopes to enhance another aspect of the care of the ESRD patient who may become critically ill.

Hospice Care and Support of Caregivers

Finally, the subgroup perceived a need for improved guidance for patients and their families as they anticipate the terminal stages of life. A lack of information or incorrect perceptions about dying are further obstacles to optimum end-of-life care and decision-making for ESRD patients and their families. Recognizing the considerable benefits often derived from the involvement of hospice care programs, the subgroup reviewed informational materials that hospice programs provide to patients and families. The group concluded that hospices would do well to provide a dialysis-specific booklet to ESRD patients. Such a booklet could provide “anticipatory guidance” to patients as well as those who will care for terminally ill dialysis patients, often in their own homes. Such guidance would reduce the stress and burden on both patients and families as they confront the symptoms and suffering of advanced illness, the tasks of caregiving, and issues of life completion and life closure.

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Promoting Excellence in End-of-Life Care is a National Program Office of The Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying persons and their families. Visit for more resources.

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