Abstract
Background:
Within oncology and hematology care, patients are sometimes considered to have such a poor prognosis that they can receive a do not resuscitate order from the physician responsible, stipulating that neither basic nor advanced coronary pulmonary rescue be performed in the event of a cardiac arrest. Studies on do not resuscitate decisions within oncology and hematology units, focusing on the specific role of the nurse in relation to these decisions, are scarce.
Objective:
The aim of this study was to investigate hematology and oncology nurses’ experiences and perceptions of do not resuscitate orders, in order to achieve a deeper understanding of the nurses’ specific role in these decisions.
Research design:
A qualitative, descriptive methodology with individual semi-structured interviews was used.
Participants and research context:
A total of 15 nurses from eight hematology/oncology wards in four hospitals in Sweden were interviewed individually.
Ethical considerations:
In accordance with national regulations, an ethical review was not required for this study. The research followed international guidelines for empirical research, as outlined in the Helsinki Declaration.
Findings:
The nurses strived for good nursing care through balancing harms and goods and observing integrity and quality of life as important values. Experienced hindrances for good care were unclear and poorly documented decisions, uninformed patients and relatives, and disagreements among the caregivers and family. The nurses expressed a need for an ongoing discussion on do not resuscitate decisions, including all concerned parties.
Conclusion:
In order to provide good nursing care, nurses need clear and well-documented do not resuscitate orders, and patients and relatives need to be well informed and included in the decisions. To increase the understanding for each other’s opinions within the medical team, regular ethical discussions are required.
Introduction
Within oncology and hematology care, patients are sometimes considered to have such a poor prognosis that in the event of cardiac arrest, coronary pulmonary rescue (CPR) is not considered justifiable as it would not provide the patient with future good quality of life. The patient can also have expressed a desire for no CPR earlier in his or her care. This can lead to a so-called do not resuscitate (DNR) order from the physician responsible, stipulating that neither basic nor advanced CPR be performed in the case of a cardiac arrest. For both physicians and nurses, this can imply difficult choices, including severe ethical dilemmas. 1,2
According to the Swedish National Board of Health and Welfare, the physician responsible should decide on a DNR order in consultation with the patient and/or the patient’s relatives. The physician should also consult another registered colleague and the patient’s other caregivers. 3 If no DNR order is in place, CPR should start within 60 s and defibrillation should be done within 3 min. 4
The Swedish Society of Medicine’s delegation for medical ethics has adopted guidelines for how decisions on a DNR should be made. These guidelines are in accordance with the above-mentioned statement from The National Board of Health and Welfare. The guidelines also emphasize the continuous evaluation of further treatment for the patient, that DNR decisions should be documented in a safe manner, and that wards should have a common and clear terminology. 3,5
Several studies have investigated nurses’ experiences and opinions of DNR decisions. It has been shown that nurses believe that patients, relatives, and nurses should be involved in decisions about DNR orders. Despite this, it has been reported that DNR decisions are sometimes made by physicians alone. 6 –8 Nurses have been found to report more stress in relation to DNR decisions than physicians do. 9 They also experience lower self-confidence about speaking with patients and families about DNR orders than physicians do, but at the same time they report a more positive attitude toward discussing DNR orders. 10 Nurses have also expressed uncertainty concerning the families’ role when deciding about life-sustaining treatment. 11,12 It has been found that nurses can experience DNR decisions as uncertain and that there is a need for more communication around the decisions. There may be obstacles to patient participation, and sometimes, the nurses feel unable to trust the physicians. 11,13
It has also been reported that the meaning of DNR can be interpreted differently and that DNR decisions can be documented in various ways. 14 Studies have shown differences in what is assumed to be included in the DNR concept and that these differences can affect the practical care of patients where decisions on DNR orders have been made. 9,14 Large retrospective studies have shown that DNR decisions are mostly made in the last days of a patient’s life, 15 often the same day the patient dies. 16
Interview studies have found that strategies such as communicating, caring, teaching, and collaborating are used by nurses to prevent and resolve conflicts that can arise when there are disagreements on a DNR status within the medical team, between patient and family, or between caregivers and patient/family. 17 Intensive care nurses have described end-of-life care as doing their utmost to relieve the suffering of the patient and ensuring the patient’s dignity. 18 Furthermore, in palliative care, it has been reported that meeting with the dying patient and his or her relatives requires nurses to create a close relationship with each unique person. 19
One important task of a nurse is to support the dying patient and his or her family. It has been reported that this task sometimes includes helping the patient and his or her relatives to realize that it may be time to end treatment. 20 Working close to the patient during long shifts and being at the patient’s side during the dying process can make nurses develop a close relationship with the patient and the family, and thereby they might become competent in seeing to their needs. 21,22 Hence, nurses have a unique perspective that allows them early on to notice when the patient no longer responds to treatment. 23
Theoretical framework
The goal of nursing, according to Virginia Henderson, 24 is to help an individual, sick or healthy, to carry out actions to promote health or recovery or, if that is not possible, to promote a dignified and peaceful death. Henderson has categorized nursing activity into three roles to illustrate the different levels of nursing, namely, the substitutive role of the nurse (doing for another person), the supplementary role (helping the other person), and the complementary role (working with the other person). These levels depend on the patient’s various needs in the process and are performed in collaboration with the patient/family and different members of the medical team. These roles are especially important in the care of the dying, 25 where the goals, besides reducing physical discomfort, should be to help the patient face death courageously and with dignity and to bring harmony to the bedside scene. 24 In the interpersonal process, the nurse should get “inside the patient’s skin,” to know exactly what help is needed. 24
Ethical competence is a core aspect of nursing. Decisions on patient treatment and care are guided by the four well-established ethical principles of autonomy, beneficence, non-maleficence, and justice. 26 These are also mirrored in the international ethical code for nurses. 27 When these principles sometimes conflict with each other, ethical dilemmas can arise, for example, the caregiver’s wish to treat the patient (beneficence) needs to be balanced against the patient’s right to refuse treatment (autonomy). Similarly, a patient’s wish to receive an expensive experimental treatment (autonomy) must be weighed against the county’s responsibility to give proven care and see to needs and cost-effectiveness. 3,26,28
Ethics rounds, which involve interprofessional discussions on ethical issues on a regular basis, may be one way of stimulating moral thinking and thereby increasing insight into ethical responsibility. 29 Ethics rounds have been used in various settings and have been perceived positively by staff. 30,31 The form of such discussions often abides to the norms of a democratic dialogue, where everyone who is concerned has the right to participate and it is the strength of the argument, not who delivers it, that counts. Everyone who participates has the right to influence the agenda, and the goal is to reach an agreement so that the dialogue can continue and lead to practical actions. 32
DNR orders are important to study within oncology and hematology care, as they are frequently made, yet often a difficult decision to make. Although studies of DNR decisions within oncology and hematology units have been performed in some countries, 15 –17,33 Swedish studies on the subject are scarce. In particular, research focusing on the specific role of the nurse in relation to these decisions is lacking.
Aim
The aim of this study was to investigate hematology and oncology nurses’ experiences and perceptions of DNR orders, in order to achieve a deeper understanding of the nurses’ specific role in these decisions. Central questions were what experiences the studied nurses had of DNR orders, what ethical dilemmas they had perceived in relation to them, and whether and how these decisions can impact the nursing situation.
Method
Sample and participants
The study was conducted in the hematology and oncology departments at four hospitals in central Sweden. Nursing unit managers in each department were contacted by phone and asked to contact nurses who had worked for at least 1 year in the department and ask for interest of participation. The managers were also sent study outlines and information about the study, to share with the nurses they talked to. The managers aimed for variation in age, gender, and work experience among the nurses.
The manager informed the first author (M.P.) of nurses who preliminarily agreed to participate in the study. They were contacted by the first author (M.P.), by phone or e-mail, and given further information about the study. All contacted nurses were included, except one, due to family reasons. She was replaced by another nurse from the same department. After 10 interviews, saturation of the material was achieved, that is, no new answers were added to the material’s main questions. 34 The remaining scheduled interviews were, however, performed, and they provided no new information. Characterization of participants is presented in Table 1.
Demographic characteristics for participants (n = 15).
Data collection
A semi-structured interview guide was developed. A condensed version of the interview guide is presented in Table 2. Questions 1–3 were based on earlier studies. 35 –37 Questions 4–5 were based on Henderson’s 24 theory of nursing. Questions 6–8 were based on ethical theory 26 and the theory on democratic dialogue. 32 Probing questions were added when needed to clarify and deepen the understanding. The questions were first pilot-tested on a nurse who was eligible for the study. A few adjustments were made, and the pilot was not included in the results. The individual interviews were done by the first author (M.P.) and lasted between 23 and 62 min. The interviews took place at the hospitals, in rooms close to the wards. They were recorded and transcribed verbatim.
Condensed version of the interview guide.
CPR: coronary pulmonary rescue; DNR: do not resuscitate.
Ethical considerations
In accordance with national regulations, an ethical review was not required for this study. 38,39 The research followed international guidelines for empirical research, as outlined in the Helsinki Declaration. 40 Permission for the study was given by the head of each department. Before being interviewed, each nurse received written and verbal information about participating in the study, including that participation was voluntary, that data would be kept confidential, and that they could terminate their participation at any time.
Analysis
The transcribed interviews were analyzed using thematic content analysis. 41 The first author (M.P.) read the transcripts, making notes in the margins as a first open coding. In the second stage, all margin words and phrases were listed. The list of words was examined for overlaps and similarities and then used for sorting all of the meaning units under appropriate codes, creating categories and subcategories (Table 3). The process was initially done by the first author (M.P.). The co-authors listened to random selections of recordings, read transcripts, and participated in the analysis, including creating categories. The final version was approved in consensus with all authors.
Analyzing process.
DNR: do not resuscitate.
Rigor of the study
In order to achieve trustworthiness, several aspects were considered. To capture as diverse experiences as possible, registered nurses from eight different wards in four cities were recruited. 42 Credibility was strengthened by the fact that the participants had no difficulty understanding and answering the questions during the interviews and that the interviewer confirmed the informants’ answers by using probing questions and asking for verifications. 43
Confirmability was strengthened by the interviewer being aware of her own possible pre-understanding as a nurse. 43 In addition, all co-authors agreed on the analysis process; they participated in identifying and formulating the categories and the choice of quotations for each category/subcategory. 42 Dependability was enhanced by the fact that the same interview guide was used for all interviews, and one researcher performed all interviews. 42
Results
The analysis resulted in two main categories, namely, Specifics of nursing care in relation to DNR orders and Hindrances to good nursing care in relation to DNR orders. Each category emanated in several subcategories, presented in Figure 1. The categories were not exclusive and sometimes overlapped. In the following sections, each category is illustrated by quotes. The sign […] indicates excluded insignificant statements.

Categories and subcategories.
Specifics of nursing care in relation to DNR orders
Closeness to the patient
Nurses in a hematology or oncology ward can have very special relationships with patients. Because of frequent treatment, they meet over a long period of time, maybe months or even years. Several nurses mentioned that because they were so close to the patient and met the patient often during their shifts, they could see changes in the patient’s well-being and status early on. The nurses also thought that it was a matter of course that they often brought up the issue of a DNR decision, as physicians only saw the patient briefly on rounds and considered the patient’s condition based more on lab results and other medical parameters. The nurses also experienced that patients could more easily show them how they felt because of their close contact: Because we get closer and understand what it’s been like and how they want things. And then maybe we think that…there shouldn’t be CPR. (Nurse 11) An informal skill, I would say, that nurses have. Which they develop by being very close to a patient for a very long time. (Nurse 8)
Levels of nursing
Some nurses mentioned the uniqueness of working in a department which focuses on hematology/oncology care. Because patients are so severely ill, conversations about death and DNR orders are daily events on the ward and are perhaps less sensitive than on other wards. But also within this area of treating severely ill patients, it can be difficult for nurses when there are young people with DNR orders: I think that…death is always present here somehow. It’s like…I wouldn’t say that you get used to it but it becomes more…of an everyday occurrence than on a…different kind of ward, I think. (Nurse 12) The room becomes more peaceful somehow […] when the decision has been made and the most intensive treatment is phased out…there’s less running, and you can avoid the constant beeping from drip counters. It becomes calmer. (Nurse 8) But it is possible that someone’s reaction would be “now that there’s a DNR, we can relax, we don’t need to do so much”…(Nurse 1) Then we can talk more openly with…the relatives. You know, I got that tradition from the hospice where I used to work. It was much easier there to talk to family members and also to the patient. When they understood the illness, we could talk openly. (Nurse 6)
Important values
When asked about the ethics around DNR decisions, some nurses mentioned criteria such as human dignity and integrity, and the importance of being open-minded to this. Principles such as autonomy, non-maleficence, and beneficence were also mentioned as important ethical concepts in DNR discussions. Some nurses also mentioned justice in regard to priorities in treatment, for example, taking severely ill patients to intensive care units, although there is a shortage of places for treatment: Not to harm but…to try to do good and …. well, yes, alleviate and try to help the patient as much as possible. (Nurse 6) I think that there should be a pretty good chance of survival. Like when you start CPR, and then […] the heart starts again but the patient will be a…package with respiratory care, and it’s hard to see…that there’s any benefit…for relatives or for the patients themselves. […] I would not like it…if someone saved my mom or dad…to become a package. (Nurse 5)
Hindrances to good nursing care in relation to DNR orders
Partial and/or unclear DNR orders
The informants also described situations that could hinder them from providing good nursing care in relation to DNR orders. In their experience, some physicians could sometimes make partial DNR orders which were perceived as confusing: We got one of those vague DNR orders…A DNR but…full code but no compressions. So it was really like this, oh well, but shouldn’t we…It was very vague in this case […] The DNR was not decided until the final stages, when she was really dying. (Nurse 10) I’ve been in situations when we have started CPR and when doctors have entered the room and said “No, we stop this now.” But it shouldn’t have to go that far. (Nurse 4) Patients and relatives also react when treatment continues, even though doctors have said they […] will not be able to do much more…and yet treatment continues as if nothing has happened. (Nurse 3)
Uninformed patients and relatives
Another aspect that could hinder good nursing care, according to the informants, was if the patient and/or the relatives were not informed of the situation. This varied between the departments, but the nurses expressed that it also depended on the physician in charge: I think that it has to do with fear among doctors. That they don’t really dare to deal with it. That they also have to talk to the relatives. (Nurse 9) Our routine is […] that we don’t inform patients and families about the decision. […] The doctors make the decisions themselves. (Nurse 11) Because the patient often listens for the first few minutes, then they don’t listen any more. It is the same with relatives. […] They usually don’t understand all that has been said, they want to talk about it and ask later, and it is easier to get hold of us than a doctor to talk to. […] So it’s good for us to know what has been said, too. (Nurse 11)
Disagreements among caregivers and/or family
The nurses also described how disagreements that could arise in relation to DNR decisions could affect the nursing care. According to the informants, it was important to be able to see the conflicts of interest that can occur, for example, between relatives and patients, but also among staff and between staff and patient/relatives: When we don’t think it’s ethical to continue to treat the patient, but the doctors want to. And also among the relatives, who really want…Can’t we try this, is there nothing new after that, what is there to do if this doesn’t work, what will you do next?…(Nurse 11) It would be a good thing to have a group where we could talk and understand the doctors’ way of thinking. […] A group that discusses ethical issues, and where you can bring up patient cases. So that the doctors understand what we mean, too. (Nurse 9)
Inadequate documentation and reporting
Finally, the nurses also mentioned the lack of consistent and patient-safe routines for reporting DNR orders within the team as a hindrance to good nursing care. When coming into a room where a patient has had a cardiac arrest, the nurse immediately needs to know whether to start CPR or not. One ward changed their routine for reporting DNR orders after a critical incident: And then there are situations where you have started resuscitation, only to realize that there was a DNR in place. […] And vice versa, you just assume that with an elderly patient who is seriously ill, we’re not going to do CPR. But if there’s not an official DNR decision, we’re actually doing wrong [if we don’t start CPR]. (Nurse 1)
Discussion
The main finding of this study is that the nurses experienced that the presence or absence of a DNR decision actually impacted the providing nursing care. Furthermore, they experienced working on an oncology or hematology ward as something special. Since the patients often had long hospitalizations, the nurses developed close relationships with them and their families. This has also been shown in earlier studies. 19,21,22 The nurses described how this closeness to patients was the reason why they often initiated discussions on DNR orders. They expressed how they saw patients frequently during long shifts, assessed their needs, and helped them with things they could not do themselves. This can be interpreted as part of the supplementary role of the nurse, as described by Henderson, 24 in which the level of nursing consists in helping the patients with things they cannot achieve on their own. The nurses also claimed that they saw changes in patient status early, in a different way to physicians, who only meet patients for brief periods of time. The relationship between closeness and the ability to see changes in patients’ health and well-being has also been reported earlier. 23
Initially, the nurses in this study claimed that neither the patients’ nursing situation nor the nurses’ behavior toward the patients’ families was affected when DNR orders were put in place. However, it emerged that the nursing situation could become calmer for the patient when a decision on palliative care had been taken and the medical treatment changed from curative to palliative. The nurses also expressed that once the DNR decision had been made, they could spend more time with the patient and the family instead of having to attend to technical medial actions. This is in line with previous studies which have shown that nurses experience hindrances to good end-of-life care when they are called away from the patient to perform other tasks and cannot stay with the dying patient. 44,45
Henderson 24 has stated that providing good nursing care is the nurses’ goal and specific task. According to both law and ethical guidelines, 3,28,46 all patients have the same right to good care and good treatment, and it ought to be important for nurses to demonstrate that no distinctions are made. This may be the reason why all nurses in this study initially denied that care or treatment was affected by a DNR order. However, according to our results, it seems possible that care will improve when a decision on DNR is made and properly documented and communicated. If DNR is ordered, the situation around the patient can turn calmer, according to the informants, and relatives may experience greater support if they get the chance to talk openly about the decision on palliative care. However, in line with previous studies, some nurses also mentioned the possibility that the patient could receive reduced care in the case of a DNR decision. 17,47
Several of the interviewed nurses mentioned the importance of treating the patient at the end of life with dignity, and they weighed this value against the risk of not having a dignified life after resuscitation. Obstacles to good nursing care mentioned were no clear decision on DNR and inadequate reporting and documentation which could cause unintended CPR.Other studies have shown that a dignified death for the patient is an important value for nurses 18 and that nurses strive to create a peaceful death where family members are allowed to participate. 44,45 This can be understood in the light of Henderson’s 24 nursing theory, according to which one of the nurse’s duties is to help the patient to a peaceful and dignified death if he or she cannot recover from illness.
Uninformed patients and relatives were also a barrier to good nursing care, according to the informants. Other studies have shown that nurses find it satisfactory when the family is allowed to be involved and thus can be helped to accept the end of life. 44,45,48 It has also been reported that nurses find it satisfying to care for the whole family, 18 while they can find it frustrating when family members cannot be involved. 48 This can also be interpreted in the light of Henderson’s theory, which emphasizes the importance of nurses working together with patient and family, particularly when caring for a dying patient. 25
The nurses in this study also identified disagreements among caregivers and/or families as hindrances to good care in DNR decisions. They thought it was important to try to understand each other’s arguments within the care providing team, but also to involve the patient and the relatives in the decisions on DNR. Previous studies have shown that nurses find it frustrating when team communication does not work and when they have no influence on the DNR process. 48 Likewise, it has been reported that nurses may feel satisfaction when physicians and nurses agree on the level of medical treatment, but can be obstructed in their caregiving when physicians are overly optimistic and insist on, what they see as, aggressive treatment. 44,45 Conflicts within the family and between healthcare providers and family can probably, at least partly, be prevented through increased information and participation. 17 This might enable the family to understand and accept, and also increase, their trust and confidence in the medical staff.
The results show several examples of ethical dilemmas in relation to DNR decisions that the nurses had experienced. Not least the wish for doing well to the patient (beneficence) was emphasized by the informants. Also, a wish to fulfill the principle of autonomy was found, in that the nurses expressed that they wanted to involve the patient in the decision on DNR. It was also described how nurses and physicians sometimes disagreed when decisions on DNR should be taken and that the nurses wished to understand the reasons behind the decisions better, for example, through discussions and dialogues.
Several nurses in this study had experience of ethical discussions, mostly sporadically, following difficult incidents. These discussions were seen as valuable because of the increased understanding of different actions and reasons for decisions. However, the informants wanted ethical discussions on a more regular basis so that the understanding of each other’s opinions could improve. Furthermore, they wanted to involve patient and relatives in the decision by keeping them well informed. This is in line with the theory on democratic dialogue, 32 according to which all concerned parties should have the right to be listened to respectfully.
An indication in our results is that the awareness of ethical dilemmas associated with DNR decisions increases with work experience, as the informants with more years in the wards were more eager to discuss difficulties and dilemmas in relation to DNR decisions. It might be that recently graduated nurses are so preoccupied with their new work that they do not have time to reflect on problems and dilemmas. This, however, needs to be further evaluated.
Strengths and limitations
In most cases, the respondents in this study expressed appreciation when being interviewed, as there seemed to be a need among them to talk about the subject and put words to their experiences. The interview situation might have been facilitated by the fact that the interviewer is a nurse. At the same time, the preconceptions of the first author (M.P.) were carefully considered in order to not affect the informants or the analysis.
The co-authors are both accustomed to qualitative studies using various methods. The analysis and the categorization evolved in fruitful meetings between all three authors. When uncertainties occurred, the authors discussed until consensus was reached.
The numbers of informants are balanced to get variation in experiences, against the possibility to get superficial analysis with too much material. 49 When planning the interviews, an effort was made to achieve variation in gender, age, and number of years of work experience. The distribution of men or women in the sample was unequal, but gender was not expected to be significant for the outcome. Although these interviews were done with nurses working in oncology or hematology settings, the results could possibly be transferred to similar settings. 42,43
Clinical implications
In order to be able to provide good nursing care in relation to DNR decisions, nurses need clear and well-documented decisions. Patients and families need to be informed about DNR decisions and the transition to palliative care, so that the additional support that comes from being able to talk openly about difficult situations can be achieved. In order to enhance the ethical competence nurses need for providing good nursing care in relation to DNR decisions, interprofessional ethical discussions on a regular basis are needed.
Conclusion
In oncology and hematology wards, where patients can have long hospitalizations, nurses can develop close relationships with patients and their families. The presence or absence of a DNR decision can impact the provided nursing care. This needs to be observed in this kind of wards. Through clear and well-documented decisions and an ongoing ethical discussion, including all concerned parties, decisions on end-of-life care might be well grounded and transparent, ensuring safer, appropriate care with positive outcomes for patients, relatives, and staff.
Footnotes
Acknowledgements
We are grateful to the nurses who participated in the study and shared their experiences.
Conflict of interest
The authors declare that there is no conflict of interest.
Funding
This work was supported by the Swedish Cancer Society.
