In this study, we used qualitative methods to study a large group of patients who had recently participated in a conversation about their resuscitation order, in order to learn more about their perspectives and decision-making rationale. Previous qualitative studies in this area have identified important considerations for DNR orders among outpatients with cancer14,15
. In our study, we focused on the resuscitation discussion itself and the reasons why medical inpatients request a “full code” or “do not resuscitate” order. While many experienced clinicians would recognize the themes we identify, this study serves to document explicitly what many have found anecdotally. This study also provides insight for less experienced clinicians.
Our study identified a number of important differences between DNR and FC patients in terms of perspective. DNR patients often had previous experience with resuscitation discussions from family members, previous admissions, or self-realization, whereas FC patients had often never discussed the subject prior to their current admission. The DNR patients were much older than the FC patients and would therefore be more likely to have accumulated such experiences. However, most medical inpatients have not previously discussed resuscitation with a physician, even in cases of advanced or terminal illness2,3
Some DNR patients wished to forego CPR in order to avoid anticipated pain or a poor quality of life. Consistent with this logic, many understood resuscitation in graphic and concrete terms that emphasized “machines” and “tubes,” while others described resuscitation in abstract terms as something that emphasized suffering and a futile prolongation of life. In contrast, many FC patients requested resuscitation in the hope of staying alive to spend time with family or fulfill personal goals. Accordingly, they generally understood resuscitation in an abstract sense as something that restores life, presumably with a high level of function. They almost always qualified their FC order by saying that they would not want resuscitation if they were older or had more advanced disease (presumably due to a poorer level of function), and they would not want to be kept on life support for a prolonged period following resuscitation.
These findings are notable because both FC and DNR patients felt that a DNR order would be desirable in cases of advanced age, or poor quality of life and overall health. These factors are subjective and variable over time, suggesting that when physicians and patients disagree about the appropriateness of resuscitation, this is probably due to differences in perception rather than philosophy. Efforts to resolve disagreements should therefore include exploration of differences in perception. Only a tiny minority of patients would request resuscitation if they understood their prognosis to be very poor16
, and others have suggested effective ways to discuss prognosis19
Those who acknowledge a poor prognosis but still request full resuscitation may do so because they fear the consequences of a DNR order. While DNR patients felt that a DNR order would emphasize a more “natural” and comfort-oriented plan of care, FC patients felt that a DNR order would lead to passive or suboptimal care, or outright euthanasia. Indeed, some observational studies suggest that orders limiting life support are associated with a higher mortality rate20,21
, although other studies have not supported these findings22
. Certainly, all health care practitioners have an obligation to ensure that patients with a DNR order continue to receive all other appropriate medical therapies (including life-prolonging therapies) consistent with their goals of care. Physicians who are faced with an apparently illogical request for FC should explore concerns about substandard care.
Although most participants were pleased with their physician’s approach to the conversation, many reported a negative emotional response overall. Both FC and DNR patients often reported being shocked or upset by the conversation, either because of the timing or the content, or simply being confronted with their own mortality. Advance Care Planning may help reduce this negative response; by normalizing the subject and raising it before an acute illness, physicians may help reduce anxiety and shock when it is raised during a deterioration18,23
.Both FC and DNR patients emphasized the importance of honesty, clarity, and sensitivity when discussing this issue. Previous studies have highlighted the deficiencies of resuscitation conversations7,24–26
, and others have proposed techniques to improve them11,19,25,27–29
Although we deliberately avoided the issues of euthanasia and assisted suicide during the interviews, a number of FC and DNR participants raised these issues on their own. Interestingly, some FC patients associated a DNR order with euthanasia and clearly implied a negative view of the subject, while the DNR patients who raised the issue all supported legalization of euthanasia. Many medically ill patients support euthanasia30,31
, but this remains a controversial subject among physicians32
. DNR orders are legally and ethically acceptable33,34
, and should not be confused or conflated with euthanasia or physician assisted suicide. Physicians who are faced with an apparently illogical request for FC should explore concerns about euthanasia.
Interestingly, no participant reported basing their decision for FC or DNR on the recommendation of their physician, and no participant mentioned a recommendation as either a positive or negative aspect of the discussion. In North America, our current practice favours a model of shared decision-making35
in which physicians are expected to make recommendations based on patient/family values. Although many patients and family members prefer this model2
, some find these recommendations burdensome36
. Our findings may indicate that physicians are not commonly giving recommendations or that these recommendations are subtle enough that they do not stand out for the patient.
Our study has a number of important limitations. Although we attempted to gain an unbiased patient sample by using broad inclusion criteria and enrolling patients admitted consecutively to the medicine service, we excluded patients whom the admitting team felt were emotionally unable to tolerate a resuscitation discussion. This might have eliminated patients who became upset or angry when the team discussed the subject with them, so we may have missed some of the important patient perspectives that exist in instances of conflict. In addition, we did not interview surrogate decision-makers, whose perspectives and decisions may be different from those of the patient17,37
. Based on the results of this study, we might speculate that instances of discordance could reflect differences in perspectives about symptoms, quality of life, goals of care, the stage of illness (early vs. late), the utility of resuscitation, and the relational view of the patient within his/her family. We plan to perform a similar study in surrogate decision-makers in the future.
The study was conducted in Canada, where citizens do not pay directly for health care. Thus, we cannot determine how direct costs of care may influence resuscitation decisions. Some patients in other jurisdictions may opt for a DNR order to avoid causing financial hardship to their family.
When discussing “resuscitation,” we did not distinguish between cardiopulmonary resuscitation (e.g., chest compressions, defibrillation) and “life support” (e.g., mechanical ventilation, vasopressors, hemodialysis), but instead relied on the patients to explain their own understanding of resuscitation. We did not attempt to distinguish between the two concepts because previous studies have suggested that patients usually have a poor understanding of resuscitation and life support2,8
, and physicians often do not distinguish between the two when discussing resuscitation24,38
. Certainly, many of the FC patients in our study clearly expressed a desire for initial resuscitation but not a prolonged course of life support in the ICU.
As with all qualitative studies, our findings may not be generalizable. We studied only English-speaking patients who felt comfortable discussing this issue. Thus, we cannot assume that our findings apply to patients from cultural groups not included in our study.
In conclusion, we learned much about patients’ perspectives of conversations about resuscitation. We also identified a number of important differences in the perspectives of DNR and FC patients, particularly in their beliefs about resuscitation and DNR orders, and their reasons for requesting or foregoing resuscitation. We hope that this information can be used to inform educational initiatives for future physicians and help current physicians better understand and address the needs of their patients when discussing resuscitation.