Do Families Understand "Do Not Resuscitate" Orders?

Introduction

Do not resuscitate (DNR) orders have become an integral part of the care of the terminally ill patient. Often, the decision whether or not to resuscitate a patient in the event of cardiopulmonary arrest must be made by the patient's family members. This is a difficult decision that is made at an emotionally trying time. Our study investigated the satisfaction, understanding, and feelings of families who sign DNR orders for their relatives. We are not aware of any other studies that have evaluated this aspect of the DNR order.

Methods

We sent 70 questionnaires to family members who had signed a DNR order for a patient who had expired over a 6-month period at North Shore University Hospital in New York, an academic tertiary-care facility situated in a residential community. The questionnaire was sent 2 months after the patient's death; the majority of patients had terminal cancer. The questionnaire was designed to determine how well the family members understood the DNR order, their satisfaction with the discussions addressing the issue, their emotional feelings concerning the process, and their level of sophistication as to the intricate details of the DNR order.

In attempting to assess how well the family member understood the DNR order, specific questions were asked concerning which medical treatments were thought to be withheld; specifically, intubation, chest compressions, pressors, antibiotics, inserting a feeding tube, and any medications not used solely for comfort. Families were asked which of the following factors they considered in making their decision: the patient's wishes, comfort, or quality of life; the cost of medical care; medical insurance coverage and its limitations; the strain on the patient's family; religious beliefs; and the wishes of other family members.

Results

Of the 70 questionnaires, 22 (31%) were returned. The DNR order was signed by the spouse in 12 cases, by the child in 6, and by a sibling in 4 cases. In all instances, the family members felt that they had made the right decision by signing the DNR order. All respondents felt that their loved one would have made a similar decision for them if the situation were reversed. Factors that the respondents considered in their decision-making process are shown in Figure 1.

Although 85% (15/21) of the respondents said that they had discussed DNR with the patient, only 35% (7/20) of the patients had signed an advance directive. The majority of respondents listed the patient's wishes, comfort, and quality of life as the major factors that influenced their decision.

In 36% (8/22) of cases, the attending physician discussed the DNR order with the respondents, as opposed to other medical personnel (covering physician, 36% [8/22]; house staff, 9% [2/22]; nurse, 9% [2/22]). One hundred percent (20/20) of the respondents felt that the timing of the discussion was appropriate.

The last group of questions was designed to ascertain how well the respondents actually understood how the DNR order would impact on medical care (see Figure 2). The majority of the respondents, 81% (13/16), understood that the patient would not be subjected to CPR (chest compressions), and 94% (18/19) understood that intubation would be withheld. Three respondents actually thought that CPR and intubation would be performed.

The issues of whether the patient would be given pressors or antibiotics and whether a feeding tube would be placed were confusing for 40% (31/77) of the respondents. It appears that a significant percentage of respondents did not completely understand the DNR order. Eighty-nine percent (16/18) said that the patient would not be given any medication except those necessary to keep the patient comfortable. Interestingly, 100% (18/18) of the respondents felt that all their questions about DNR had been answered.

Discussion

Ideally, the general population would understand and decide which therapeutic options they would prefer through all phases of an illness. New York State has enacted legislation regarding the activation of a DNR order. This order withholds advanced life support and CPR in the event of cardiopulmonary arrest. As public and physician awareness of this issue improves, one hopes that more patients will make this decision for themselves.

Currently, the decision of whether to sign a DNR order is made more often by the closest relative acting as a surrogate for a terminally ill patient. A published survey [1] determined that 70% of the general adult public would not want life-sustaining treatment used if they were incapacitated and terminally ill. Yet, a study performed in upstate New York found that less than 25% of decisions about CPR or DNR were the result of informed decision-making by patients themselves [2]. Surveys have shown that less than 15% of the general population have executed a living will, and that only half of those who have done so have discussed their wishes with family members [3].

These decisions are clearly difficult for family members to make. Some of the stress involved could be minimized if patients executed their own advance directives in the event of serious illness [4]. It has been proposed that, in specific circumstances (metastatic cancer, end-stage cardiac disease, or brain damage), this autonomy should not exist and DNR orders should be automatic [5]. However, current public and legislative opinion favor allowing people to decide for themselves.

Our study focused on the health-care surrogates. We sought to determine how well they understood the ramifications of the DNR order, and whether they were satisfied with the process at our institution. The study had several important findings. First, a few months after signing the DNR order, the vast majority of family members still felt that they had made the right decision. This reflected a recognition that, at the end of a terminally ill patient's life, all measures are not appropriate and that some limits should be placed on the therapeutic measures taken. Afterwards, these families did not regret their decision. Similar feelings were reported by Arena et al [6] concerning the ramifications of a surrogate decision about DNR in cancer patients.

Second, despite their level of comfort with signing the DNR order, the families had a poor understanding of precisely which therapeutic measures would be continued and which would be withheld or even withdrawn. It was notable that all respondents felt that all their questions had been answered, suggesting that they were unaware of their limited understanding. Whether this was because the explanation was beyond their capacity to comprehend, or whether they chose not to understand it, was not addressed by our investigation. This finding does, however, illustrate the need for the public to become more medically sophisticated as they assume greater responsibility in their own health-care decisions.

Finally, it should be pointed out that many of our respondents equated the DNR order with comfort care. This is not the law's intent. While the two decisions are often made concurrently, they are not the same. Perhaps more patients or their families would be comfortable with the DNR decision if they realized the limits of its consequences.

As institutions adopt policies to protect patient's rights and foster autonomy, it is important to obtain feedback as to how well these policies are understood. This study reveals the difficulties that can be encountered when we attempt to involve patients and their families in complex therapeutic decisions. The public needs to be educated on this important issue, with the physician acting as the primary patient advocate.