When paternalism = bravery: a ‘slow code’ dilemma

What are doctors supposed to do if a patient’s relatives fail to agree with a Do Not Resuscitate order, even when the doctor knows that such resuscitation would be completely futile? One solution to this, described in literature coming out of the United States, is the ‘slow code’. This is when a deliberately ineffectual resuscitation attempt is made to satisfy relatives, but also to ensure that on no account will a patient’s  heart be restarted.  ‘Code’ is the American term for a crash call. A 2011 paper in the American Journal of Bioethics (£) defended this  practice, albeit in the arena of neonatology where the positive psychological effect on parents who need to know that ‘everything was done’ may be more important.

                “A leading textbook calls slow codes ‘dishonest, crass dissimulation, and unethical.’ A medical sociologist describes them as ‘deplorable, dishonest and inconsistent with established ethical principles.’ Nevertheless, we believe that slow codes may be appropriate and ethically defensible in situations in which cardiopulmonary resuscitation (CPR) is likely to be ineffective, the family decision makers understand and accept that death is inevitable, and those family members cannot bring themselves to consent or even assent to a do-not-resuscitate (DNR) order.”

Another paper, based on interviews with critical care practitioners (“Slow” Code: Perspectives of a Physician and Critical Care Nurse, Critical Care Nursing Quarterly 1999) [free access] included this powerful passage:

                “I remember a specific case involving a 30-year-old patient with a particularly virulent strain of pneumonia. Blood was sent to NIH to rule out hanta virus. It was a case that was frightening but also very enlightening and interesting. She developed full-blown ARDS so severe that only bilateral lung transplants would have saved her.

                “Routine turning caused her to desaturate because she was that unstable. I can understand that, because she was 30 years old, the family wanted everything done. No matter what we said to them, they didn’t hear that there were no alternatives. Of course, this was an extreme case, one in which I can understand the family’s wishes.

                “If I didn’t have the medical knowledge about ARDS and someone told me that my 30-year-old sister was going to die, I would have wanted everything done. The family thought we could do lung transplants right there in the room. They had to be very gently wooed into the idea of a DNR status. She coded before a DNR status could be obtained. In this case, the family was very much opposed to a DNR status and a “slow” code was performed to satisfy their needs.”

In acute general medicine similar but less dramatic dilemmas are encountered on a daily basis. Although it is rare for disagreements between relatives and doctors to arise, it is common for there to be a delay of several days while families engage in conversations about the benefits, and burdens, of resuscitation. During that hiatus, anything could happen. Many patients therefore remain For Resuscitation, by default, while doctors attempt to achieve consensus.

Consider this scenario. A 91 year old lady is admitted to hospital with symptoms of urinary tract infection and significant kidney dysfunction.  She is confused, temporarily, by the sepsis. She has been living alone but depending on the help of relatives and neighbours, nothing major. The consultant agrees with the junior doctor’s initial diagnosis and confirms that the antibiotic and fluid prescriptions are correct.  There is no sign of cardiac instability, but he decides to take the relatives (a son and a daughter, in their late 50’s or 60’s) to one side. He begins to explore the subject of unexpected complications, and the possibility of sudden cardiac arrest.

‘I’d like to discuss with you on the issue of resuscitation. Your mother doesn’t appear to be in any danger, but we must consider that during any illness there is a risk of sudden deterioration. We should anticipate what we should do, and what she would want us to do, if heart were to stop.’

‘She’s very strong. She was ill four years with pneumonia but she pulled through, she’s a fighter.’

‘I can see she is, but if the worst were to happen, and the heart were to stop, then however strong she seems now it would be very difficult for her to recover.’

‘So what are you saying?’

‘My feeling is that the chances of her coming round, of surviving, even if we did cardiac compressions and gave electric shocks with the defibrillator, the chances would be very small. I think she would have a lot of damage to the heart and possibly the brain, and would be unlikely to leave hospital.’

‘We haven’t really thought about this before. No one has ever said this before. ’

‘I’m not asking you to decide, certainly not. It’s just important that you understand why we make these decisions, and important that we know how your mother would feel.’

‘What would your advice be?’

‘I definitely would not advise that she has resuscitation. I would be very uncomfortable letting that happen given her physical frailty.’

The doctor recognises a steely look in the two relative’s eyes. He senses that his introduction of the subject of dying has caused a reaction. They exchange glances, and the son replies,

‘Well we really do have to go away and talk about that. I mean, as I say, she would want everything possible done to get her through this. She really is a fighter. She had a cancer operation five years ago, and they said she couldn’t have that…but she did.’
‘OK. I don’t think we have to reach a final decision at this precise time. Perhaps it’s good that we’ve talked about this now…you can think about it with the family overnight. But my opinion would be that resuscitation would not be right for her. Perhaps tomorrow or the next day we can talk again…I really would like there to be something in her notes so that any other medical teams called to see her know what to do if…she goes downhill.’

‘Fine. But we need to talk about this as a family.’

The junior doctor, who was present throughout, asks,

‘But isn’t it a medical decision?’

‘Yes it is. You’re quite right. But do you want to tell them that, at the moment? They are shocked by the idea that their mother might die. I think it’s a step too far tonight to write a Do Not Resuscitate form until they have expressed their agreement.’

‘But if she does arrest you’ve said she won’t survive. As it stands she’ll be resuscitated if she arrests.’

‘My assessment is that the risk is low. If she was showing signs of instability I would probably have to force the issue tonight, and perhaps write out a DNAR form without their agreement. But it’s going to take a lot of talking to lead them to understand the reasons why we don’t want to resuscitate.’

So the form goes unwritten. The consultant leaves in the hope that nothing untoward will happen. Has he done the right thing?

Here are some potential futures.

 – Outcome [1] –

The patient has cardiac arrest at 2 o’clock in the morning. The crash team is called and begins to work on her. While the anaesthetist prepares to intubate another doctor performs cardiac compressions, and the nurse attaches defibrillator pads to her chest. The medical registrar, standing at the end of the bed, reads through the notes. There is very little to read, only the admission clerking and the post take ward round entry. There are no major co-morbidities, but the patient’s advanced age and her evident physical frailty are inescapable. The second bolus of adrenaline is just about to be given when the registrar puts her hand up and says, ‘I don’t think this is right. The consultant was hoping to make her Not For Resus but the patient but the family didn’t agree. He wrote that it’s to be reviewed tomorrow. Clearly he thought she shouldn’t be For. There’s no way she’s going to survive this.  We should probably stop. Does everybody agree?’

The anaesthetist nods, the nurse running the ward nods. There is agreement… and the attempt is stopped.

What harm was done here?

The patient died and was not aware of anything. There was a genuine attempt to revive her, but, as soon as the registrar became aware of the circumstances she stopped it. Not a slow code, but a short code; almost an accidental code.

So, although the patient remained For Resuscitation, according to the paperwork, she was Not For Resuscitation, in spirit. The intention of the consultant who could not bring himself to actually fill out the form was in fact carried through by the crash team, although the patient still suffered (unconsciously) the indignity of three minutes of full-on advanced cardiac life support.

This strikes me as duplicitous. The decision not to resuscitate, very likely correct, had been made but had not been enacted or formalised for fear of resistance from the family. It is reasonable in this case that the form was not filled out because the consultant thought there was only a low risk of the patient dying over the next 24 hours, but…but, patients in their 90s do sadly die without warning. So the sensible precaution not to resuscitate was not in place. The reason? The consultant did not want to find himself at odds with the family, or the subject of a complaint. Because another scenario is as follows,

– Outcome [2] –

As the consultant departed from the ward round he had second thoughts. His junior’s question had got to him. So he went back, explained his reasons in the notes and completed the Do Not Resuscitate form. He felt that this was the right thing to for the patient. The patient arrested at 2 o’clock in the morning. The nurses had been informed of the DNAR decision and the crash team were not called. The patient died quite suddenly but quite peacefully. The family were called, after death, given its unexpected nature. They arrived, asked about the circumstances, and learned that no attempt had been made to revive her. They were upset; voices were raised.  Three weeks later and  formal complaint was made.

The consultant had unilaterally made the patient Not For Resuscitation, in opposition to the families interpretation of their mother’s desires, desires that she might have able to articulate had she had not been temporarily confused by the infection.

Without going over the top here, I am tempted to portray the consultant’s actions in Outcome [2] as brave. In order to protect his patient from the risk of a futile resuscitation attempt he signed the form, did the ‘right thing’ (according to his analysis of the situation), but took a risk. He knew that there was a chance of generating a complaint, of being accused of paternalism, arrogance and playing God.

What would you do?

Notes:

i) GMC guidelines for DNAR decisions in patients who lack capacity to be involved in the decision emphasise the desirability of involving the healthcare team and those close to the patient, in order to understand as much as possible about the patient, and their known attitudes. However, as regards family agreement,

“In particular, you should be clear about the role that others are being asked to take in the decision-making process. If they do not have legal authority to make the decision, you should be clear that their role is to advise you and the healthcare team about the patient. You must not give them the impression that it is their responsibility to decide whether CPR will be of overall benefit to the patient.

ii) Why not try to resuscitate a 91 year old lady? The literature suggests that very few patients in this age range survive to discharge. Although age in isolation is never used to decide on treatment, the fact remains that overall fragility and organ function is likely to be impaired at this stage of life. For specific citations on this subject see a previous blog, ‘A form of words: honesty, kindness, coercion and early resuscitation discussions.’

iii) Most physicians I know would not fill out the DNAR form in this scenario.

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