Ethical controversies in the process of formulating new national guidelines on cardiopulmonary resuscitation in Sweden

Introduction

In 2013, new national ethical guidelines on cardiopulmonary resuscitation (CPR) were published in Sweden. ¹ The Swedish Society of Medicine, the Swedish Resuscitation Council and the Swedish Society of Nursing worked jointly for almost three years on the creation of these guidelines.

Three main reasons lay behind this joint effort. Several local guidelines co-existed in the country, but none of them had the status of being “national”. Requests for national ethical guidelines were therefore often made by health-care professionals. Secondly, empirical data, as well as narratives, indicated that there was a discrepancy between the way decisions about CPR were being made in real life and how they should be made according to ethical guidelines, as well as Swedish law.^2,3 The primary aims were to clarify ethically defensible reasons for not starting CPR, to make it clear how do-not-resuscitate orders (DNR orders) should be adequately documented and to elucidate how best to involve patients, close loved ones and staff members. Finally, the aim was to formulate guidelines that would be suitable for patients of all ages and also pertain to arrests that occur in a pre-hospital setting or within municipal care.

The work of developing these guidelines included a review of the literature related to the question of the ethical aspects of CPR, as well as studies of the decision-making process with regard to CPR in Sweden. A number of hearings were held in order to discuss the crucial ethical questions. Moreover, different versions of the working document were sent out to different professional organisations, with a request for comments. As a result, it can be argued that these new guidelines have the support of Swedish health-care professionals. ⁴ In order to make sure that the text was in line with that in the statutes, the guidelines were discussed with legal experts at the Swedish National Board of Health and Welfare.

The purpose of this article is to present six ethical issues related to CPR that were the most extensively discussed during the process, including the arguments for and against a particular point of view. The final statements in the guidelines relating to these controversial issues are also presented.

Determining whether or not CPR is beneficial for the patient

The guidelines propose three reasons for not starting CPR. One of the most essential starting points for these guidelines was to emphasise that a competent patient has a right to be involved in the decision-making process regarding CPR and to have the final say about whether or not it should be performed, unless the physician decides that the patient’s life cannot be saved based on the available medical facts. The first two reasons are well in line with those generally expressed in the international literature on ethics related to CPR. ⁵ It is ethically defensible not to start CPR: 1. When the patient does not want CPR and 2. When the physician decides that CPR will not restore spontaneous circulation and respiratory function. ¹ As a result of the process described above, a third reason was added. It relates to situations in which CPR is found not to be in the patient's best interests: 3. When the physician decides that CPR will not benefit the patient, even though there might be some chance that CPR will restore spontaneous circulation and respiratory function. ¹ In the statute from the Swedish National Board of Health and Welfare regarding life-sustaining treatment, it is stated that life-sustaining treatment should not be initiated if it is not in accordance with “science and tried and tested experience.” ³ In our opinion, this concept is difficult to interpret and does not sufficiently highlight the ethical dimension or value aspect of these decisions.

Some physicians were doubtful about or even critical of adding the third reason for not starting CPR. They feared that it could be interpreted as meaning that the guidelines were opening the door to more paternalistic behaviour among physicians. For instance, physicians might be more inclined to decide what is in the best interests of children with severe disorders without sufficiently involving the parents in the decision.

However, the vast majority who commented on the third reason welcomed it and felt it was in good agreement with clinical experience. In fact, they felt that it was the most common reason for withholding CPR in clinical practice and that it was therefore also favourable to have it clearly written down in guidelines as ethically defensible.

The presence of close loved ones during CPR

Studies have shown that most people want and feel that they have the right to be near their loved ones during resuscitation efforts, in most cases representing the final moments in life. ⁶ Being present may help them to feel assured that everything possible has been done in order to save the patient’s life. Moreover, it may facilitate the grieving process. This practice is also in line with the recommendations from the European Resuscitation Council. ⁷

Depending on the actual context in which the arrest occurs, the conditions for family presence may be quite different. In connection with out-of-hospital cardiac arrest, close loved ones are usually present at the scene and are sometimes also performing CPR when the ambulance personnel arrive. The question that arises is whether the staff should ask close loved ones to leave, or accept that they stay, regardless of the prevailing circumstances. ⁸ In hospital, the staff are primarily faced with the question of whether they should actively ask close loved ones who are waiting outside the room whether or not they want to be present during on-going CPR.

During the subsequent discussions, it was argued that it is important to consider that the presence of loved ones might prevent the emergency staff from providing adequate CPR. For instance, cardiac arrests may occur in places where space is a limiting factor. ⁹ Moreover, strong emotional reactions from close loved ones may actually distract staff members and obstruct teamwork. ⁹ A conflict between staff and family members may also arise about when the resuscitation should be terminated. Some health-care personnel questioned the benefit of offering close loved ones the opportunity to witness CPR, regardless of the circumstances. In fact, CPR may be regarded as a violent procedure, in particular when the arrest is due to a traumatic injury. ¹⁰

The final formulation of the guideline became: “Close loved ones should generally be offered the chance to be present during CPR, provided that the treatment of the patient is not negatively influenced.” The importance of setting aside time for the personnel to care for loved ones and continuously inform them about what is happening during the procedure was also emphasised.

Performing CPR for the benefit of people other than the patient

It has been argued that performing CPR for the sake of someone other than the patient can be ethically justifiable. Moreover, empirical studies have shown that ambulance personnel sometimes perform CPR even though it is considered medically futile. One of the main reasons for this strategy is to show or convince family members that everything possible is being done to save the patient’s life. Other reasons include avoiding dealing with family members’ emotional reactions following a pre-hospital or out-of-hospital death declaration, family members’ unwillingness to accept the termination of CPR, physicians’ discomfort with or hesitation about allowing the ambulance personnel to terminate resuscitation efforts and the personnel’s fear of liability. ¹¹ Some suggest that CPR should continue during transportation to hospital because family members’ acute grief reactions are more properly addressed at the emergency department than on the scene outside hospital, implying that the interests of family members and health-care professionals should be given a standing equal to the patient’s interests. ¹² Others suggest that CPR should not be started, alternatively terminated, outside hospital if the patient has expressed a clear desire not to be resuscitated. ¹³

The first version of the working document stated that it may be ethically defensible to continue CPR in order to assure close relatives and bystanders that everything possible has been done and that their efforts were commendable. However, this position and the arguments presented in its favour were later called into question, as it may be seen as a so-called “show code,” or a symbolic ritual, in which there is a hidden intention not to save the patient's life. ¹⁴ Moreover, it has been argued that it is unethical not to tell the truth about the expected outcome of CPR and to raise false expectations. ¹⁵

Based on these arguments, the initial passage about continuing CPR for a short period of time, even though it may be deemed not to be successful, was excluded in the final version of the guideline. Instead, the following statement was added: “When a resuscitation attempt is terminated, it is essential that those who are involved (loved ones and health-care professionals) have no doubt afterwards that the professionals did everything for the patient that was medically appropriate for the patient.” This statement does not mean that CPR should be prolonged in order to remove any doubts regarding the reasonableness of withdrawing CPR. Instead, we believe that it is important to deal with eventual doubts and differences of opinion by taking good care of the patient’s loved ones by other means.

Ambulance personnel’s mandate to decide not to initiate and to terminate CPR outside hospital

The conditions for treating patients with out-of-hospital cardiac arrests differ substantially from those inside hospitals. The ambulance personnel are confronted with a challenging situation where they have to deal with uncertainties regarding the patient’s CPR preferences and medical history, as well as future prognosis.^11,16 Physicians are usually not present or readily available in the pre-hospital setting in Sweden. The guidelines therefore included a section on the conditions under which the ambulance personnel have a mandate to make decisions on whether or not to initiate, or to terminate CPR outside hospital.

This question turned out to be the most intensively debated during the entire process. Some argued that only physicians could make this decision. Others argued that ambulance personnel should be allowed to take on this responsibility, providing that well-defined conditions for refraining from CPR were met, implying that the general rule to initiate CPR should not be applied unconditionally.

Initially, the proposed formulation was: “The EMS chief physician can give a mandate to ambulance personnel to decide that CPR should not be initiated, or that on-going CPR should be stopped. This decision should be made in consultation between the ambulance team members.” Beyond this, it was stated that designated medical consultants at the hospital should give support in decision-making when it was needed and asked for. The importance of easily obtaining support or advice from consultants of this kind was emphasised.

The original statement was based on the following arguments. The ambulance personnel have undergone special training. Most of them have considerable experience and are competent to treat and assess cardiac arrests adequately, including recognising when a person is dead and notifying family members of the patient’s death. The majority of the personnel are registered nurses who provide care on the basis of general directives and guidelines issued by EMS chief physicians. ¹⁷

This, in turn, raises the question of which health-care professionals are competent to make ethical decisions at the end of life. European studies have shown that ambulance personnel who have a mandate and responsibility in terms of making decisions related to CPR are able to handle this in an ethically defensible manner while patient safety is maintained. ¹⁸ It is also a great advantage to be able to observe and examine the patient and have first-hand information at the time of the decision. ¹⁴ Moreover, it can be questioned whether physicians in general are more competent to make end-of-life decisions, based on ethical considerations, that are in the best interests of patients compared with other health-care professionals.

Critical comments were, however, made by a key player in this context, the Swedish Resuscitation Council. Leading representatives argued that out-of-hospital decisions should not be made differently compared with those made in hospital and that the same ethical guidelines should therefore be applied within the whole health-care system in order to reach “ethical uniformity and justice.” The council referred to the physicians’ formal responsibility and medical competence as being essential to the legitimacy of the decisions. Moreover, there are strong reasons for ambulance personnel to initiate CPR because of the uncertainties related to patients who are affected by cardiac arrests in the field. The information about the patient’s medical condition is often insufficient and the patient’s preference regarding CPR is generally unknown. It is also difficult to make correct prognoses about the chances of survival and quality of life following resuscitation attempts. ¹⁴ The proposal to extend the ethical decision-making mandate to ambulance personnel was excluded in the final version, due to difficulties to reach consensus on this point.

Limiting the length and content of CPR

The basic rule is that CPR should be performed according to current medical guidelines, unless a DNR order has been made. ⁷ A decision to terminate should be based on the physician’s judgement that CPR will not restore spontaneous circulation and respiratory function and/or that the risks associated with continuing CPR outweigh the benefit to the patient.

Early in the guideline process, the question arose of whether or not the guidelines should include an opportunity to make a decision in advance to limit CPR in terms of length and content. The chance of surviving to discharge after CPR is substantially higher when the initial rhythm is a shockable arrhythmia, compared with asystole or pulseless electric activity. ¹⁹ As a result, some authors have suggested that it can be regarded as ethically justified, referring to prognostic reasons and the principle of do no harm, to limit CPR to a few electric shocks in cases of ventricular arrhythmia on patients who are judged to have a very small chance of surviving to discharge after CPR and/or to limit the length of the resuscitation attempt. ²⁰ This strategy offers patients in more severe stages of chronic diseases a reasonable chance of surviving with sustained quality of life after successful treatment. The feared risks associated with a prolonged procedure will also be avoided or at least diminished. It is important to consider the fact that a substantial number of patients who have been resuscitated will need treatment at an intensive care unit (ICU) for various periods of time afterwards. Besides questioning the care at the ICU in terms of the patient’s best interests, it is not uncommon for health professionals to express doubts about the appropriateness of using limited resources, including the shortage of ICU beds, for severely ill patients with very poor prognoses, as this might be at the expense of other patients who could benefit more from treatment at an ICU. ²¹

Arguments against limited CPR were identified during the guideline process. Dealing with cardiac arrests in this way can be regarded as a half measure that makes health professionals unsure about how to act and deprives patients of the opportunity to obtain optimal treatment, thereby reducing their chance of surviving. Moreover, it is not always easy to distinguish between ventricular fibrillation and asystole and different arrhythmias can occur during the course of a cardiac arrest. ²²

To our knowledge, “limited resuscitation orders” are sometimes being implemented in places in Sweden, mostly in terms of “only defibrillation in the event of ventricular arrhythmias.” In fact, the question of whether or not it should be possible in advance to order limited, less aggressive or gradual CPR is often raised for discussion.

In the end, the guidelines include a section about limited CPR in the background text, including a description of the concept accompanied by the following statement: “In patients with very small chances of surviving a cardiac arrest, it might be appropriate to consider limiting the content and length of CPR.” ¹

Whether or not to specify a week of gestation before which CPR should not be started

Deciding whether or not a resuscitation attempt should be performed on extremely preterm infants is a difficult medical and ethical question. The neonatologists who, in the light of prognostic uncertainty and a limited number of medical facts, decide to initiate resuscitation do not know whether their treatment will prove beneficial or futile in the long run. Lives may be saved but at the cost of long-lasting suffering.

For CPR in general, evaluating success is a delicate matter as it involves addressing questions pertaining to individual preferences about the kind of life that is worth living. When it comes to preterm infants, this issue is even more pressing, in particular since the parents, if or when on their child’s behalf they are asked to abstain from CPR, have limited prospects of making an informed decision, due to the urgency of the situation. There is also the matter of whose preferences should be allowed to impact these decisions – those of the neonatologist or those of the parents.

In many countries, national guidelines are designed to direct decision-making close to or at the limits of viability. These guidelines generally include recommendations for appropriate management at different weeks of gestation, as well as different levels of parental involvement in decision-making. Some countries refrain from specifying gestational age as a factor to guide the decision-making in neonatal resuscitation situations, whereas others clearly state the level of care to be offered at different gestational ages. ²³

In Sweden, variations in policy and management conflict with equal rights in health care. Determining a gestational age for abstaining from CPR, thereby formalising age discrimination, is arguably equally problematic. From a longer perspective, differences in management between centres may further the development of a sensible standard as well as the quality of care delivered, provided that centres share results and are jointly motivated to implement these advances.

In the guideline work, gestational age as a useful prognostic factor was debated. In short, there were two strong positions; (1) gestational age is a useful prognostic factor and should determine the level of care, including CPR decisions, in early life, and; (2) gestational age should not influence the recommendation given in the guideline, regardless of prognostic relevance. Consensus was not reached. However, refraining from a recommendation about the level of care, including CPR, at different gestational ages received the most support.

Consequently, in the background text to the guideline, the following is noted: “In the particular situation related to the newborn baby, the general approach should always be to perform adequate CPR according to the national guidelines from the Swedish Society of Paediatrics, independently of history, physical and prenatal findings and gestational age. A decision not to start CPR on a newborn child should only be made by (or in direct contact with) a physician with a specialist degree in neonatology, paediatrics, paediatric surgery or anaesthesiology.”

Discussion

New ethical guidelines on CPR have been formulated in Sweden. The primary aim was to provide guidance for physicians, when it comes to deciding whether or not to perform CPR in the event of cardiac arrest. A range of different professional organisations participated in an open process on central ethical issues in this partly controversial area of medical practice. The process was time consuming and many versions of the guidelines were produced before they were finalised. Experience from the guideline process clearly demonstrates that there is a need for open deliberations on crucial ethical questions related to CPR.

During the process, six issues emerged on which consensus was difficult to reach and where different standpoints came to the fore. Some of these issues were foreseeable, whereas others were somewhat surprising. The consensus was in favour of giving close loved ones the opportunity to be present during CPR, unless their presence had a substantially negative influence on CPR. When asked for or called into question, close loved ones should also be assured that everything that should have been done was done for the patient before death. Moreover, the majority of stakeholders agreed on a third prerequisite for abstaining from CPR; that is, when CPR is judged not to benefit the patient, even though there might be some chance that CPR will restore spontaneous circulation and respiratory function. The guidelines make it possible to limit CPR in cases where the chances of survival are small, such as ensuing asystole or pulseless electric activity. However, no consensus was reached on whether or not the ambulance personnel should be given a mandate to decide not to initiate or terminate CPR at the scene, or whether or not to specify a gestational week before which CPR should not be started. As a result, these two questions are still open to discussion in Sweden.

The greatest challenge ahead is the implementation of the guidelines in clinical practice across the health-care system – from pre-hospital care all the way to municipal care. We would like to stress the importance of discussing CPR preferences with patients or with their families. Respecting patient autonomy in this context means that a competent patient has a right to make a well-informed choice to abstain from CPR and to be informed in case a DNR order has been made. There is an urgent need to ensure that DNR orders are made with transparency and participation as fundamental procedural principles. In fact, the decision on whether or not to raise the question with the patient should be regarded as part of the professional doctor's ethical awareness and sensitivity.