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Abstract
Since their introduction as ‘no code’ in the 1980s and their later formalisation to ‘do not resuscitate’ orders, such directions to withhold potentially life-extending treatments have been accompanied by multiple ethical issues. The arguments for when and why to instigate such orders are explored, including a consideration of the concept of futility, allocation of healthcare resources, and reaching a balance between quality of life and quality of death. The merits and perils of discussing such decisions with patients and/or their relatives are reviewed and the unintended implications of ‘do not attempt resuscitation’ orders are examined. Finally, the paper explores some alternative methods to approaching the resuscitation decision, and calls for empirical evaluation of such methods that may reduce the ethical dilemmas physicians currently face.
- Attitude of health personnel
- attitudes towards death
- ethics
- quality of health care
- resuscitation orders
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‘Birth was the death of him’, as the Irish playwright, Samuel Beckett remarked. In the UK, 68% of the population dies in hospital,1 and of those, 80% have ‘do not attempt resuscitation’ (DNAR) orders in place.2 Despite this, patients, caregivers and healthcare professionals are uncomfortable discussing DNAR.3–5 Perhaps as a result, these conversations do not take place as frequently as they should.6–8
Misunderstandings about what DNAR means and when it should be instituted abound.9–11 In addition, there is evidence that DNAR in themselves can worsen care.12 13
In this paper, we examine the ethical issues surrounding DNAR, and address the reasons for the reluctance, fear and confusion that are currently prevalent.
History
A secret code
When cardiopulmonary resuscitation (CPR) was first introduced in the 1960s14 the intention was that it should be practised on everyone.15 It was swiftly realised that this was not appropriate, particularly on terminally ill patients, and so ‘subtle’ signs were created to indicate to healthcare professionals that certain patients should be exempted from this aggressive therapy. Red hearts in the notes,16 and stars written next to patients' names17 are two such examples. As these were often prone to misunderstanding, the idea of an explicit ‘order’ or ‘code’ developed. Again, clarity was lacking: ‘not for 222s’ was often written in the notes (‘222’ being the number called to contact the arrest team in many hospitals in the UK) or, in the USA, ‘no code’18 (‘code’ referring to the specific tannoy that would go out to call the resuscitation team). Moreover, it was shown that, in this setting, elective decisions not to resuscitate were not effectively communicated to nurses.19
Do not (attempt) resuscitation: past to present
In 1991 in the UK, the Parliamentary Ombudsman upheld a complaint by the son of an elderly woman who had been given ‘not for resuscitation status’ by a junior doctor without consultation.20 A letter to all consultants then followed, asking for clarification in the guidance.21 This was duly published in 1993.22 The impact of the presence of do not resuscitate (DNR) forms was assessed, and thought to demonstrate an ‘important change in the philosophy of care for hopelessly ill patients’.23 DNR was later changed to ‘do not ATTEMPT resuscitation’ (DNAR) to try to convey that the chance of successful resuscitation was low24; patients and relatives have been shown to have unrealistically high expectations of the chances of survival from attempted resuscitation25 thought to be partly due to the success rates portrayed on television.26 In addition, the important step was taken of making the DNR form an easily visible form, often put at the front of notes. This served the critical purpose of making it immediately accessible in the event of a patient's arrest, rather than healthcare workers having to trawl through the notes to find whether an instruction regarding resuscitation was written somewhere. Having a separate form on the front of the notes, however, also immediately identifies those patients who are not for resuscitation as being different from those who are.
A DNAR is an instruction to withhold resuscitation. It should not affect any other aspect of care.27 A DNAR form is filled in when a physician believes that a patient would not benefit from attempted resuscitation, or at a patient's request. In the UK, there is no legal obligation to tell a patient that such a form has been completed concerning their care and a patient has no legal right to demand its removal.28
There is still no uniformity, in the UK or in the USA, in these forms, although the Resuscitation Council (UK) has recently developed what it hopes can be a national approach.
Ethical issues abound in relation to DNAR orders (colloquially and hereafter in this paper referred to simply as ‘DNAR’): first in deciding whether or not a patient should be a candidate for resuscitation; second in the discussions that may or may not occur with the patient and the family; and finally in considering the impact a DNAR form has on patient care.
Decision making
Most junior doctors have been in the position of reminding their consultant that a DNAR should, perhaps, be considered on the frail elderly patient who is receiving palliative care and has started to exhibit Cheyne–Stokes breathing. And most will have experienced the frantic call from a nurse in the middle of the night to clarify the resuscitation status on a patient who is rapidly deteriorating.
When should a DNAR be considered?
There is no standard means for deciding whether a patient should have a DNAR. There are no national policies about when a DNAR should be considered nor on which categories of patients. Some hospitals have policies suggesting that it is considered within 48 h of admission, incorporating the consideration into admission documents, while most leave it to the consultant's discretion. Consultants themselves have very different approaches: some considering DNAR routinely on each patient, others only in the context of a patient becoming ‘at risk’ of cardiac arrest.
Such variability in practice means that when a patient does not have a DNAR in place, the on-call clinician does not know whether this means that either a decision has actively been made that a patient should be a candidate for resuscitation, or merely that no-one has yet considered the resuscitation decision.
By not routinely considering resuscitation decisions or by filling out a DNAR order form only when the patient becomes sick enough to be thought to warrant one, many patients remain inappropriately for resuscitation.
Why consider DNAR?
Even if the time of decision making were uniform, the process of making the resuscitation decisions poses ethical dilemmas. Although there is agreement that resuscitation should be attempted if there is a possible reversible cause for the arrest, there is considerable uncertainty as to when it is right not to attempt resuscitation. Several reasons are commonly given, each of which we examine below.
‘Small chance of survival’
Much has been written about the concept of ‘futility’, and its use in justifying DNAR. It has two aspects: quantitative and qualitative. Quantitatively, futility has been defined as when a treatment has a less than 1% chance of achieving its physiological objective.29 One major practical difficulty with such an approach is that no good models exist for predicting which patients will survive attempted resuscitation. Ebell et al30 showed that physicians were no better at identifying patients who would survive resuscitation than would be expected by chance alone. A larger and more recent epidemiological study31 did not reveal any reliable models for predicting survival from CPR, and in fact suggested that a physiological definition of futility could be applied to very few patient groups.
If there were a method of accurately predicting restoration of circulation following an arrest (which is the immediate physiological objective), the question remains: ‘does this benefit the patient?’.
‘A life not worth living’
‘Qualitative futility’ is also referred to as ‘normative futility’,32 namely ‘is this treatment considered worthwhile?’ The problem with making a decision based on qualitative futility is that, inherent in the decision-making process are the physician's subjective views about what is worthwhile or in the patient's ‘best interests’. Moreover, it has been shown that physicians often misunderstand the resuscitation preferences of seriously ill, hospitalised patients.33 Not only are physicians making subjective assessments of the patient's current quality of life, but there is little to help us predict the final outcome of resuscitation—we know, for example, that 25% of patients will have ‘moderate to severe impairment in memory, which could hamper and/or preclude the resumption of pre-arrest roles’,34 but we are not very good at predicting which patients will make up that 25%.
‘To prevent pain and suffering’
CPR includes an aggressive set of interventions, which clinicians believe can cause suffering such as pain and discomfort. Rib fractures, for example, were found in 29% of patients who had resuscitation attempted on them.35 If the chance of a successful outcome from resuscitation is very low then causing suffering, with no benefit, is prima facie wrong. However, little is known about the extent to which attempted resuscitation causes suffering and whether patients are aware of, or are able to remember, such discomfort. Only 10% of patients remember something of the resuscitation being attempted.36 No studies have been done to see whether patients who have survived resuscitation remember the experience being painful, or whether they are glad that resuscitation was attempted. Even if patients do not remember a painful experience it does not mean that they did not experience pain. There are therefore problematical issues both with regard to researching the empirical facts (whether patients do suffer) and to analysing the ethical questions (the weight to be given to unremembered suffering).
It can be argued that the chances of causing pain and discomfort (which may or may not be remembered) are small enough to pale into insignificance when compared with the inevitable outcome of death if no resuscitation is attempted. If this argument was to be followed through, it would suggest that all patients should have resuscitation attempted on them unless they explicitly request otherwise. The current practice—of DNAR in place for those who are assessed as having a very low chance either of survival or a reasonable quality of life—may serve not so much to reduce suffering as to promote a good ‘quality of death’ (ie, ‘peacefully’, without attempts at resuscitation) rather than maximally extending life. This is particularly important in those patients in whom imminent death is expected.
‘Poor use of resources’
The final issue, which is rarely mentioned either in medical training or on medical ward rounds, is the distribution of healthcare resources. If every patient remained for resuscitation, the cardiac arrest team (consisting of, at minimum, two medical doctors, an anaesthetist and two nurses) would have to go to four times as many arrest calls, many of which would be unsuccessful. For those patients successfully resuscitated, further medical treatment and significant resources are required for their continued care; usually a period on the intensive care unit and often long-term care at diminished neurological capacity. The economic studies looking at cost–benefit analysis for attempted CPR show it to be expensive (an international multicentre trial from the 1990s suggests approximately US$406 605 per life saved, and US$225 892.00 per quality-adjusted life-year).37 In addition, the cost per patient surviving to discharge increases exponentially as the rate of survival to discharge decreases.38
Decision made?
Ethical reasons for withholding attempted resuscitation therefore include, but are not limited to, patient request, an attempt at avoiding a treatment that has more chance of doing harm (pain, discomfort, lack of dignity) than good (survival, but at possibly reduced quality of life), trying to provide good ‘quality of death’ and the consideration that resources would be better used elsewhere. To be confident in using any of these reasons, however, more research is needed: in economic analysis, in survivor experience and in creating better tools to predict who will survive resuscitation and in what state.
Imagining, for a moment, however, that all of that information is available, and that a physician is confident in their opinion that a patient should not be a candidate for resuscitation. In the UK, two further major considerations await them: ‘Do I need to discuss this opinion with my patient or their relatives?’ and ‘Does labelling this patient DNAR alter the care they will receive beyond not having resuscitation attempted on them?’
Discussion
Some discussions about resuscitation are straightforward; one elderly lady, when the offer of attempted resuscitation was made, replied: ‘Well, whatever would you want to do that for? I am 87!’ but in general they pose many challenges.
Guidelines
The UK guidelines on when and whether to discuss resuscitation decisions, and indeed with whom, have changed over the past 10 years. The inconsistencies in the 2001–2 joint British Medical Association/Royal College of Nursing resuscitation guidelines39 were pointed out by Randall.40 In particular the statement ‘you should usually comply with patients' requests to provide cardiopulmonary resuscitation, although there is no obligation to provide treatment you consider futile’ carries significant ambiguity. The guidelines advised that decisions pertaining to resuscitation should be discussed with patients ‘…where competent patients are at a foreseeable risk of cardiopulmonary arrest, or have a terminal illness…’. This advice has been reversed in the current (2007) guidelines,27 which state: ‘When a clinical decision is made that CPR should not be attempted, because it will not be successful, and the patient has not expressed a wish to discuss CPR, it is not necessary or appropriate to initiate discussion with the patient to explore their wishes regarding CPR’. Although, of course: ‘Where the expected benefit of attempted CPR may be outweighed by the burdens, the patient's informed views are of paramount importance. If the patient lacks capacity those close to the patient should be involved in discussions to explore the patient's wishes, feelings, beliefs and values.’
Is patient autonomy paramount?
The argument in favour of discussing treatment decisions with patients is that it rejects the old patriarchal style of practising medicine and respects patient autonomy: resuscitation is a medical treatment like any other and should be discussed in the same way. Several questionnaire-based studies have shown that patients would prefer to have resuscitation decisions discussed with them.41–43 In addition, there is evidence that having a discussion about resuscitation with consenting patients reduces their anxiety scores,44 although the same paper also highlighted the practical difficulties of having conversations with patients within 24 h of their admission. This paper unfortunately does not give any indication of what happens to the anxiety scores (or equivalent) of the kind of patient who did not consent to take part in the study.
It has also been argued that rather than discussing resuscitation in isolation with a patient, we should be looking ahead to possible sequelae: a truly informed request would be: ‘I want resuscitation to be discontinued, if you predict that I will not recover to a level of neurological function that is acceptable to me’.45 In circumstances in which the outcome is difficult to predict—and we have seen that this applies to most individuals—we should be offering the possibility of a discussion, to allow the patient to make an informed choice between a (small) chance at survival with a (small) chance of experiencing pain or discomfort, and a reasonable chance of having diminished quality of life, or the maximum possibility of a ‘good quality of death’.
Can discussion cause harm?
On the other side is the argument that this kind of conversation can cause harm. Schade and Muslin46 presented seven selected case studies of patients on whom discussing CPR had had a negative impact on their psychological state, while Sayers et al47 interviewed 19 patients about their DNAR discussion, and found that six of them showed distress, and two had no recollection of the conversation. Both of these studies, however, have very small sample sizes, and that performed by Sayers et al47 excluded all of those patients who were considered ‘overtly anxious or depressed, or who might be upset at participating in such decision-making’.
In the UK, the patient does not have the right to demand a treatment that the doctor does not think is in their interests.29
It is clear that a patient would not benefit from a clinician who so valued the concept of full disclosure that he said something like: ‘just wanted to let you know, in the event of your heart stopping, which might happen, given your current sickness, we aren't going to try to restart it.’
In addition, given that it is currently not routine to discuss such decisions, the individual who has come into hospital on several occasions without anyone mentioning resuscitation would be justified in being concerned when a doctor did introduce this topic of conversation.
The negative connotations of the sentence ‘DNAR’ also need to be taken into consideration. The concern among physicians is that a discussion about resuscitation alters the patient–doctor relationship48 by altering the perception of the doctor from care giver to care withholder. To mitigate this problem, it has been recommended that a change in terminology to ‘allow natural death’ or ‘AND’49 could reduce the harm done by discussing such matters—although using an acronym that is also a common conjunction may pose its own problems.50 51
Partly as a result of this, doctors themselves are not confident having conversations about resuscitation.5
Discussion with relatives
If a patient lacks capacity, then under the Mental Capacity Act of 2005, physicians have a responsibility to speak with close relatives or carers whenever possible. Ethical issues arise, however, when relatives wish to discuss care for a patient who still has capacity, without the patient's knowledge: we cannot guarantee that the surrogate knows what the patient would want, nor that he or she has the patient's best interests at heart. Is it ever right to discuss the care of a patient (with capacity) with someone other than the patient before discussing it with the patient themselves? What if, for example, a decision has been made that it would not be appropriate to attempt resuscitation on a patient and that there would be no benefit in discussing this. A relative then approaches you privately and asks directly what the resuscitation status of the patient is. In this circumstance, is it better to ask the patient a generic (but slightly disingenuous and therefore slightly dishonest) question like ‘Do you mind if I discuss your care with your relative?’ Or does the request by the relative change the balance of harm and an open conversation should be had by all? or first with the patient, and then, with the patient's permission, with the relative? There are no hard and fast rules, but the clinician should be governed by finding the balance between respecting the patient's autonomy and minimising harm, both to the patient, and to the doctor–patient relationship.
Impact
At a medical handover for the night team, a member of the nursing ‘outreach team’ was asked whether there were any sick patients he was aware of that needed review. ‘There are plenty of sick patients he replied’ but they are all DNAR. ‘In response, a registrar quipped: ‘DNAR? Does that mean “doesn't need another review?”’
There is, then, a further level of complexity in resuscitation decisions. What if the DNAR does not simply do what it is meant to (direct staff what to do in the event of a patient's heart stopping) but in practice has wider treatment implications?
There is evidence that DNAR are misinterpreted to mean that treatments other than resuscitation should be withheld or diminished.9–11 In our hospital, a recent questionnaire given to 50 doctors and 35 nurses confirmed this is still the case (submitted).
Consistent with this, studies have shown that DNAR can alter patient care. Beach et al52 carried out a survey of doctors on hypothetical patients, and demonstrated that the presence of a DNAR had an effect on decision making, reducing the likelihood of physicians transferring their (hypothetical) patients to the intensive care unit, giving them blood transfusions, or placing central lines as well as a raft of other interventions.
Other studies have shown that those with DNAR have less intensive care12 13 and, controlling for comorbidities and sickness severity scores, increased mortality.53 54 While this is clearly a practical (and potentially medico-legal) problem that requires addressing urgently, the current situation adds another level of ethical complexity to resuscitation decisions.
Conclusions and future direction?
If the current approach to DNAR can harm patients in the ways described, then the entire decision-making process needs to be reconsidered. We have highlighted how DNAR decisions, discussions and repercussions carry inherent ethical and practical difficulties. No physician would be comfortable writing a DNAR if he or she believes it worsens the care that the patient will receive. Equally, no doctor wants to see a patient subjected to aggressive but doomed attempts at resuscitation.
Sailing thus between Scylla and Charybdis is not an activity without risks, and it seems that the current system could be improved to lessen some of the ethical dilemmas that face healthcare professionals.
We could find no research examining the benefit of educational initiatives for medical and nursing staff about DNAR orders, to assess whether targeted training might lessen the misunderstandings that are apparently still prevelant; studies in this field would be welcome.
Over the past two decades, several alternative methods to the DNAR have been developed and have been shown to improve documentation,55 56 and reduce the number of CPR attempts (while not affecting mortality).57 Advanced care plans have been developed to improve end-of-life care for palliative patients (Physician's Orders for Life-Sustaining Treatment (POLST)),58 or for those specifically at risk of deterioration (Treatment Escalation Plan (TEP)).59 A universal form is in place in Timmins Hospital, Ontario.60 Clinical algorithms, guiding clinicians through the complexities of DNAR implementation and decision making have also been published.61 62
We propose that a better designed form and process might help reduce some of the uncertainty surrounding DNAR orders, and make ethical issues easier to tackle. In particular, such a form, while maintaining the clarity of instruction that the current DNAR provides in the event of a patient arresting, should prompt consideration of reasons for the decision, facilitate documentation and discussion (when appropriate) with patients and relatives and, perhaps most importantly, reduce the risks of misunderstanding and miscommunication surrounding the resuscitation decision. We believe it is critical that such a form positively assert what treatments are appropriate for a patient, as well as clarifying which ones should be withheld. Finally, we propose that such a form should be universal; by routinely considering such decisions with patients, we may remove both the negative stigma of the DNAR form and improve conversations with patients.
As with other areas of medicine, it is vital that changes in practice, including in the way that we approach resuscitation decisions, are evaluated in well-conducted clinical trials, with the ability to provide the evidence of protection from the negative impact of the current DNAR. This research should consider not only clinical outcomes, but should look, when possible, at patient and clinician experiences in order to create an evidence base that might facilitate ethical decision making in the future.
Acknowledgments
The authors are grateful to Tony Hope for his support, advice and helpful comments on the manuscript, Angela Fritz for her multiple reviews and constructive suggestions and Isla Kuhn for her assistance with literature searches. They are also grateful for the support they have received from the NIHR Research for Patient Benefit grant.
References
Footnotes
Funding The National Institute for Health Research, Research for Patient Benefit Programme supported this study, but has had no direct involvement in the writing of this paper.
Provenance and peer review Not commissioned; externally peer reviewed.
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