(left to right) Rachel Pruchno, PhD, director of research, New Jersey Institute for Successful Aging, University Professor and Endowed Professor of Gerontology, UMDNJ- School of Osteopathic Medicine; Francine cartwright, program assistant, Options study; Richard mcconaughy, jd, phd, research data analyst, options study

End-of-life treatment preferences of older nephrology patients and their spouses by Rachel Pruchno

The aging of our population and the tremendous biomedical advances of the past several decades have raised a host of new ethical questions regarding initiating, withholding and terminating treatment at the end of life. While advances in medical technologies have enabled people with chronic illnesses to be kept alive in conditions never before possible, so too have they created the need for people to make life or death decisions that were unthinkable even as recently as a decade ago.

Decision making at the end of life is often complex and full of emotion. The principal foundation guiding decision making at that time is patient autonomy, a standard suggesting that individuals have the right to make decisions about their healthcare treatment. Although our society values individual
autonomy, the reality is that many older people are unable to express their wishes about treatment at the end of their lives.

In the absence of patient competence, patient autonomy requires that the preferences of the patient be honored when treatment decisions are made. Advance directives in the form of durable Power of Attorney for Health Care or Health Care Proxy and Living Wills are mechanisms that have been promoted to empower people with the capacity to maintain their voices in healthcare decisions should they later lose their capacity to do so. However, the reality is that most Americans do not have an advance directive, and even when an advance directive exists, it is frequently ignored.

When a patient’s cognitive ability is compromised, healthcare professionals typically ask family members to make health related decisions for them. The President’s Commission for the Study of Ethics Problems in Medicine and Biomedical and Behavioral Research has endorsed “substituted judgment” as a means for promoting patient autonomy. Substituted judgment calls for family members to make decisions in a manner that approximates the patient’s wishes. It assumes that family members understand patient preferences and can correctly represent their wishes.

Patients with end stage renal disease (ESRD) make end-of-life decisions on a daily basis. ESRD is an incurable, life-threatening disease marked by permanent cessation of kidney function, forcing patients to receive some form of dialysis to survive. The decision to discontinue dialysis means that the patient will die within days. Moreover, because patients with ESRD often have additional co-morbid conditions that limit their ability to make decisions, family members are often called upon to make substituted
judgments for patients with ESRD.

The OPTIONS study, funded by a grant from the National Institute of Nursing Research (R01 NR 05237), examines the lives of patients with ESRD and their spouses. The central question the study seeks to address is how patient and spouse preferences for dialysis treatment relate to one another and how these preferences change over the course of time. Eligible couples include a patient diagnosed with ESRD who has been on hemodialysis for at least six months and is at least 55 years old. To be eligible to participate in the study, couples had to have been married for at least five years. Each patient and spouse are interviewed at intake to the study and then annually for three years. Interviews are conducted by telephone.

A total of 315 couples living throughout the U.S. have been participating in this research. The average age of patients and spouses is 69.9 and 67.8 years, respectively. The majority of patients are Caucasian (85.5%), while 10.7% are black/African-Americans, 1% Native Americans, and 2.7% identify themselves as being of other or mixed races. The average length of patients’ treatment for ESRD at intake was 6.7 years. Patients and spouses had been married for an average of 41.4 years.

Patients and their spouses were presented with a series of hypothetical situations and typical conditions of people with ESRD (e.g., stroke, dementia, coma, terminal illness). Following the description of each health condition, patients were asked the following question: “If you had this condition, how likely would you be to want to continue your dialysis treatments?” (patient preference). Spouses were asked two questions after each hypothetical description. The first questions asked were “If the patient had this condition, how likely would you be to want his/her dialysis treatments continued?” (spouse preference) and “If the patient had this condition, how likely do you believe she/he would be to want his/her dialysis treatments continued?” (substituted judgment).

Analyses revealed that patients and their spouses have very different preferences about the desirability of the patient continuing dialysis. Across all hypothetical situations, spouses were consistently more likely to indicate a preference for the patients to remain on dialysis than were the patients themselves. Moreover, the substituted judgments that spouses indicated they would make fell between their own preferences and the patients’ preferences on each of the hypothetical scenarios, suggesting that substituted judgments reflected both the patients’ actual preferences and the spouses’ preferences. More detailed analyses indicated that patients’ preferences accounted for only minute proportions of the substituted judgments made by spouses. On the other hand, spouses’ own preferences were highly significant predictors of their substituted judgments.

To understand the dynamics responsible for the above differences, a second set of analyses examined the factors predicting patient preferences and spouses’ substituted judgments. Results indicated that patients’ preferences to continue dialysis were positively related to their education, subjective quality of life, and religious participation, and negatively related to months of ESRD treatment and fear of end-of-life suffering. Spouses’ substituted judgments regarding patients’ dialysis continuation preferences were positively related to being African-American and to spouses’ perceptions of patients’ quality of life, and negatively related to months of ESRD treatment, spouses’ perceptions of patients’ negative affect, and spouses’ own fear of end-of-life suffering.

Information from the OPTIONS study provides a more comprehensive understanding of the preferences for end-of-life treatment held by patients and their spouses than previously existed. The tendency for spouses’ own preferences rather than actual patient preferences to guide substituted judgments helps to confirm the inability of surrogate decision makers to accurately represent the wishes of the people whose perspectives they are presumed to represent. Results from this study suggest the need for better and more structured communication between patients and their surrogate decision makers. Healthcare providers can play an important role in facilitating this conversation. Explicit conversations between patients, family surrogates and physicians can help physicians and family members gain a better sense of the patients’ preferences and values regarding life-sustaining treatment. This knowledge can become invaluable should the patient lose decision-making capacity.

Rachel Pruchno, PhD, received her BA from Michigan State University, her MA from Oakland University and her PhD from Pennsylvania State University. She joined the faculty of the New Jersey Institute for Successful Aging at the UMDNJ-School of Osteopathic Medicine in July 2004. Her research over the past two decades has focused on older people and their families. In addition to the OPTIONS study, she has funding from the National Institute on Aging to study women who are in the labor force while simultaneously taking care of an older person.§