Allow natural death versus do-not-resuscitate: titles, information contents, outcomes, and the considerations related to do-not-resuscitate decision

Cardiopulmonary resuscitation (CPR) is an emergency procedure that has been developed to stop cardiopulmonary bypass caused by accidents [1]; however, CPR is not appropriate for patients with a terminal illness or who are dying. It cannot cure the diseases but causes harms [2]. In Taiwan, the Hospice Palliative Act was passed in 2000 and adults can sign a “do not resuscitate” (DNR) order to refuse futile medical treatment when a person is dying.

Some surveys have revealed that most patients are willing to participate in an DNR discussion [3, 4]. However, decision-making is not easy and the timing of the decision may be close to death [5]. While, in Taiwan, terminal patients who received hospice care had to have DNR orders [6], and around 65% patients in intense care units had DNR orders [7]. Less than 2% of the healthy adults had decided DNR orders for themselves, and older adults do not have it [8].

The predictors of a DNR order include older age [9, 10], a cancer diagnosis or poor prognosis [10], poor health condition [9], poor activities of daily living [10], terminal illness with pain symptoms [11], and awareness of prognosis and the survival time following CPR [12]. A study used scenarios with various conditions, and the results showed that patients tended to accept a DNR order under the conditions with older age, pain symptoms, and dementia; and for incurable conditions, better quality of life was an important consideration of DNR [13]. In addition, people with relevant experience, such as experience of caring for patients with a terminal illness and dying patients [14], and those with knowledge [15], tended to sign the DNR order.

The decision of DNR involves specific medical knowledge and legal regulations, and discussing DNR is a process of communication between the patient and physicians. Several variables may influence their understanding. The first variable is the title; using the term “DNR” that includes “do not” may hint that they should give up or that the medical staff should not give any treatment [16]. Meyer (2002) suggested using the term “allow natural death” (AND) to replace DNR, which addresses the fact that death is natural and that the goal of care in the dying phase is for the patient to be comfortable rather than suffering unnecessarily [17]. A study that used scenarios with DNR and AND showed that a higher ratio of nurses and nursing students signed the permissions with AND compared to those with DNR [18]. Physicians and nurses also had more positive perceptions about AND than DNR [19].

The second variable is the contents. The success rate of CPR can influence the participants’ decision; it decreases the decision of receiving CPR when they realize its low success rate [20]. However, people may misunderstand the effect of CPR [21] and do not comprehend the information adequately [22]. In addition, descriptions that are too negative [23] and that have too much or too little information [24] decrease the likelihood of signing the DNR. Few studies have explored the potential effects of the title and contents on the DNR decision in a healthy population.

Better quality of communication about DNR was related to higher satisfaction with care [25]. However, there are problems with the DNR communication: (1) the DNR discussion may be too little and the patients’ preferences may not be respected, (2) the timing of the discussion is too late for the patients to participate, (3) the medical staff do not provide appropriate information for decision-making, and (4) the medical staff inappropriately assume that patients with the DNR orders did not want any treatments [26]. The barriers in patients include that the patients do not understand their diagnosis or prognosis well, are not ready to talk, and are afraid of death [27]. Exploring people’s information needs and their consideration of DNR is important that medical staff could provide the essential information and talk about the individual persons’ needs in relation to DNR decisions.

Therefore, the aims of this study were to explore: (1) how “allow a natural death” versus “do not resuscitate” and specific scenarios and outcomes, influence the willingness to sign a DNR order; and (2) the information needs and consideration of the DNR decisions, and the benefits and barriers of the DNR discussion, in the general population.

A total of 524 participants were recruited. The mean age was 39.19 years (SD = 14.34), 312 were female, more than half had a college or university degree, and 39.31% rated their health as good. Regarding DNR experience, 84.16% had heard about DNR, 24.43% had signed a DNR order, 95.23% would like to participate in the DNR discussion, and 50.76% would accept the order one day. Regarding the appropriate timing of the discussion, the first was “when the disease had progressed to the terminal stage” (30.34%) and the second was “when the patient was healthy” (27.48%). In addition, 54.39% agreed that patients and their families should make the DNR decision together and share the responsibility, and 35.50% stated that the patients should make the decision by themselves (see Table 1).

Regarding the title, there was a significantly higher probability of signing when using the AND document than when using the DNR document (t = − 4.51, p < 0.001). Regarding the information contents, there were significant differences in the likelihood of signing the DNR order between the four different information contents (F = 60.64, p < 0.001), and the post-hoc analysis showed that the higher probability was related to more information. Regarding the outcomes, there were significant differences (F = 292.16, p < 0.001), and the post-hoc analysis showed that “the patient was in a vegetative state and unconscious” outcome had the highest probability and that “the patient has to stay in an intensive care unit and will die within two weeks” and “the patient has an endotracheal intubation and lives with a ventilator” had the second highest probability. This was followed by “the patient is clearly conscious but cannot take care of himself/herself, and has to rely on others,” “the patient may have a tracheostomy tube but can take care of himself/herself,” and “the patient will completely recover” in sequence (see Table 2).

The most common information needs were “remaining life period” (75.57%), “the prognosis of the disease” (74.43%), “future symptoms” (70.80%), “hospice and palliative care” (67.56%), “the diagnosis of the disease” (66.60%), and “CPR procedure” (63.93%). The important factors when making the DNR decision included “the consequence of the CPR procedure” (88.93%), “patients’ willingness” (88.55%), “patients’ current physical conditions” (87.40%), “suffering when receiving CPR” (85.88%), and “still having other curative treatments” (83.97%).

The benefits of a DNR discussion included “reducing suffering” (72.90%), “arrangement of medical care as wished” (72.52%), and “reduction of the families’ burden” (70.80%). The barriers related to the participants not wanting to discuss DNR included “families’ worries” (50.95%) and “uncertainty about future physical changes” (46.76%). The barriers related to a discussion about DNR with families who had a severe disease included “worry that they cannot handle the topic” (58.59%), “they do not know when the appropriate timing is” (41.22%), “they do not know how to discuss it with them” (36.64%), and “they do not know the progress of the disease” (35.88%) (see Table 3).

The study used scenarios to explore the factors related to a DNR decision. It was found that the participants were more willing to accept a DNR decision when the title referred to AND, when there was comprehensive information, and when there were worse outcomes. The participants took into account current physical conditions and future care plans, and they considered the consequences of DNR and the patient’s willingness. More than 70% of participants agreed that DNR could reduce the patient’s suffering and family’s burden. However, family’s worries, uncertainty about the physical conditions, and lack of skills were barriers to the DNR communication.

Similar to a previous study of medical staff [18], the results supported that the general population also prefer the title with AND rather than DNR. The document with “do not” in the title may hint at giving up and the medical jargon may be difficult to understand [14]. In addition, following the promotion of education about life and death and hospice palliative care by the government and hospice-related organizations, the general population can accept that death is natural and face the DNR issue.

The information contents may influence the decision. When the participants had comprehensive information, they had a higher willingness to sign the DNR order. Comprehensive information could include the prognosis of the disease, the goal of DNR, and the success rate and side effects of CPR. The outcome of CPR was one of important considerations [29]. People can evaluate whether the effect of CPR would match their goal and the patient’s best interest. It might decrease the probability of CPR when the participants understand the survival rate of CPR for the dying patient [20]. In addition, they evaluated the level of functional impairment and dependence. If the patient had severe functional impairment and had to depend on others’ care, they then tended to sign the DNR order.

Worse physical conditions and no curative treatment would make people choose DNR, as well as the suffering when receiving CPR. The reason was that if there was no chance to prolong life, then they would not increase the patient’s suffering. If the patients were too old, they also would not want to increase the burden and suffering. In addition, future symptoms and the CPR procedure were regarded as important information about the level of suffering, and they may accept a DNR order if there was too much suffering.

People needed several information for making a DNR decision. The most important information needed for decision-making was “remaining life period,” as has been found for patients with advanced lung cancer [30]. DNR was viewed as a death-related decision, and how much time the patients have was regarded as important information. They also needed information about the disease characteristics of diagnosis and prognosis, which can be used to determine if the patients were in the end-of-life stage. Expectancy about prolonging life was an important foundation of the DNR decision [31].

Patients’ willingness was another important consideration. If the patients had expressed their opinions about DNR and end-of-life medical treatments, people could follow the patients’ willingness. However, if there was no expression, they could make decisions based on only the current information they had, including the physicians’ suggestions, previous understanding of the patient’s values, and the best interest of the patient.

The participants considered that DNR can reduce suffering and the medical care can be arranged as the patients wish. It also decreases the family’s burden, not only in terms of medical care but also the psychological burden, and they did not have to make the decision for the patient.

In spite of the benefits, there were still barriers to the discussion. Discussion of the DNR and end-of-life issues involve various skills. A lack of skill was one of the main barrier to discussion for the families with advanced disease [29]. They worried that they could not handle the topic, and did not know how to open and continue the discussion. In addition, the participants did not want to discuss their own DNR as it could contribute to the families’ worries. The dialogue nature of the DNR discussion is related to death [32], and they were afraid of increasing the families’ worries. On the other hand, they may not understand certain aspects of the physical changes and prognosis, and they did not have enough information about the symptoms and the dying process. Due to the uncertainty, it may be difficult to discuss it and to make a decision. The relevant medical information was also an obstruction that they would like to let the physicians take responsibility for in the discussion.

In the clinical situation, the health-care providers can address the concept of natural death and peaceful dying, and deliver comprehensive information about the goal, likelihood of success of CPR, potential harm, and outcomes. The health-care providers should help people to detect the benefits but also to overcome the barriers in terms of information and discussion skills.

Some limitations of this study should be acknowledged. First, this study used a scenario but there may be a difference between behaviors in real situations and choices in scenarios. Second, the participants had heard about DNR and were willing to participate in the DNR discussion; however, the results may not apply to participants who are not familiar with DNR. Third, the title and information were part of the communication, and other factors, such as the relationships between the families and patients, and between the physicians and patients, were not included in this study. Fourth, convenience sampling was used that the participants who were willing to join the study may have positive attitude about DNR and hospice care, and the results may not be generalizable beyond Taiwan. In future studies, an experimental design with a different title and different information could be conducted in clinical practice to exam whether the patients receiving AND tend to accept the order or have higher satisfaction.

Discussion about DNR is a process of communication, and the title that includes AND, comprehensive information about terminal illness, the goal of DNR, and the success rate and harm of CPR, and the worse outcomes of CPR with severe functional impairment and dependency may increase the DNR decision. The healthy adults needed information about the remaining life period, the prognosis of the disease, and future symptoms, the consequence of the CPR procedure and suffering when receiving CPR, and the patients’ willingness. The barriers arising from the families’ worries, uncertainty about future physical changes, and lack of skills may disrupt the DNR discussion.