Do Families Understand "Do Not Resuscitate" Orders?

April 1, 1996

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.

Introduction

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

Methods

We sent 70 questionnaires to family members who had signed a DNRorder for a patient who had expired over a 6-month period at NorthShore University Hospital in New York, an academic tertiary-carefacility situated in a residential community. The questionnairewas sent 2 months after the patient's death; the majority of patientshad terminal cancer. The questionnaire was designed to determinehow well the family members understood the DNR order, their satisfactionwith the discussions addressing the issue, their emotional feelingsconcerning the process, and their level of sophistication as tothe intricate details of the DNR order.

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

Results

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

Although 85% (15/21) of the respondents said that they had discussedDNR with the patient, only 35% (7/20) of the patients had signedan advance directive. The majority of respondents listed the patient'swishes, comfort, and quality of life as the major factors thatinfluenced their decision.

In 36% (8/22) of cases, the attending physician discussed theDNR 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 feltthat the timing of the discussion was appropriate.

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

The issues of whether the patient would be given pressors or antibioticsand whether a feeding tube would be placed were confusing for40% (31/77) of the respondents. It appears that a significantpercentage of respondents did not completely understand the DNRorder. Eighty-nine percent (16/18) said that the patient wouldnot be given any medication except those necessary to keep thepatient comfortable. Interestingly, 100% (18/18) of the respondentsfelt that all their questions about DNR had been answered.

Discussion

Ideally, the general population would understand and decide whichtherapeutic options they would prefer through all phases of anillness. New York State has enacted legislation regarding theactivation of a DNR order. This order withholds advanced lifesupport and CPR in the event of cardiopulmonary arrest. As publicand physician awareness of this issue improves, one hopes thatmore patients will make this decision for themselves.

Currently, the decision of whether to sign a DNR order is mademore often by the closest relative acting as a surrogate for aterminally ill patient. A published survey [1] determined that70% of the general adult public would not want life-sustainingtreatment used if they were incapacitated and terminally ill.Yet, a study performed in upstate New York found that less than25% of decisions about CPR or DNR were the result of informeddecision-making by patients themselves [2]. Surveys have shownthat less than 15% of the general population have executed a livingwill, and that only half of those who have done so have discussedtheir 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 executedtheir own advance directives in the event of serious illness [4].It has been proposed that, in specific circumstances (metastaticcancer, end-stage cardiac disease, or brain damage), this autonomyshould not exist and DNR orders should be automatic [5]. However,current public and legislative opinion favor allowing people todecide for themselves.

Our study focused on the health-care surrogates. We sought todetermine how well they understood the ramifications of the DNRorder, and whether they were satisfied with the process at ourinstitution. The study had several important findings. First,a few months after signing the DNR order, the vast majority offamily members still felt that they had made the right decision.This reflected a recognition that, at the end of a terminallyill patient's life, all measures are not appropriate and thatsome limits should be placed on the therapeutic measures taken.Afterwards, these families did not regret their decision. Similarfeelings were reported by Arena et al [6] concerning the ramificationsof 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 therapeuticmeasures would be continued and which would be withheld or evenwithdrawn. It was notable that all respondents felt that all theirquestions had been answered, suggesting that they were unawareof their limited understanding. Whether this was because the explanationwas beyond their capacity to comprehend, or whether they chosenot to understand it, was not addressed by our investigation.This finding does, however, illustrate the need for the publicto become more medically sophisticated as they assume greaterresponsibility in their own health-care decisions.

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

As institutions adopt policies to protect patient's rights andfoster autonomy, it is important to obtain feedback as to howwell these policies are understood. This study reveals the difficultiesthat can be encountered when we attempt to involve patients andtheir families in complex therapeutic decisions. The public needsto be educated on this important issue, with the physician actingas the primary patient advocate.

References:

1. Emanuel L, Barry M, Stoeckle J, et al: Advance directives formedical care--A case for greater use. N Engl J Med 324(13):889-8951991.

2. Quill T, Bennett N: The effects of a hospital policy and statelegislation on resuscitation orders for geriatric patients. ArchIntern Med 152:569-572, 1992.

3. Emanuel E, Weinberg D, Gonin R, et al: How well is the patientself-determination act working?: An early assessment. Am J Med95:619-627, 1993.

4. Emanuel L, Emanuel E: The medical directive: A new comprehensiveadvance care document. JAMA 261:3288-3293, 1989.

5. Murphy D, Finucane T: New do-not-resuscitate policies: A firststep in cost control. Arch Int Med 153:1641-1647, 1993.

6. Arena F, Treanor S, Killackey, D: The aftermath of the Do NotResuscitate (DNR) decision: The surrogate's dilemma. Proc Am SocClin Oncol 11:401, 1992.