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.
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.
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.
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  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 . 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 .
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 .
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 . 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  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.
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6. Arena F, Treanor S, Killackey, D: The aftermath of the Do Not
Resuscitate (DNR) decision: The surrogate's dilemma. Proc Am Soc
Clin Oncol 11:401, 1992.