A form of words: honesty, kindness, coercion and early resuscitation discussions

As doctors are encouraged to address the issue of resuscitation at an ever earlier stage following admission to hospital, the problem of how to introduce the subject becomes more acute. If sufficient thought is not given to the challenge, there is a risk of coercion, especially in more elderly patients.

Studies and audits of patients who have undergone cardiopulmonary resuscitation (CPR) show that in many cases it would have been appropriate for a DNAR instruction to have been put in place before the cardiac arrest. To put it simply, the clinical information available made it clear that CPR was always going to be futile. Even if patients do not appear unstable it is sensible to discuss the risks and benefits of resuscitation with those who are frail and elderly. A large epidemiological study of patients in the U.S. who underwent CPR (William J. Ehlenbach et al, NEJM, 2009) found that 12.2% of those aged over 90 years survived to discharge. This result is at the optimistic end of the spectrum: other studies have found 0% survival in those over 90 years, and one found that for every survivor over 80 years of age, 29 would need to undergo resuscitation (David Paniagua et al, Cardiology, 2002).

One could argue that patients should consider whether they would like to be resuscitated or not even before they are admitted to hospital. There is certainly a drive now to encourage patients to think about end of life scenarios while they are stable, at home and completely clear in their thoughts (for instance the National End of Life Care Programme). Once they are admitted to hospital it is common for patients to lose the capacity to make fully informed decisions. It is at this time that doctors are required to canvas the opinion of the patients’ loved ones and work out what they would have preferred and to make their medical decision within that context. As we know from cases that have recently been referred to the Court of Protection the wishes  of the patient or their family are not always congruent with the medical team’s opinion.

The ideal therefore is for patients to have engaged with this question before they become unwell. The next best thing is to engage them in the topic once they have been admitted to hospital, but before the worst happens. Indeed there is a growing expectation that  resuscitation decisions (be they For… or Not for…) be made at the first consultant review following admission, and certainly within 48-72 hours (NCEPOD, Time To Intervene).

So how do we raise a subject in busy clinical environments or in situations where the last thing on the patient’s mind is the possibility that their heart might stop?

Optimum approaches have been explored before. An article by Charles F von Gunten, published in the Journal of Clinical Oncology (2001), presented a 6 step model:

 

1. Establish an appropriate setting for the discussion.

2. Ask the patient and family what they understand.

3. Find out what they expect will happen.

4. Discuss a DNR order, including context.

5. Respond to emotions.

6. Establish and implement the plan

 

The sense of this algorithm cannot be doubted. The reservation I have is that a post-take round does not provide for the conditions that are required for it to work. There is little privacy, the relevant family members may not be present, and responding to the emotional fall-out can take up more time than is easily afforded in the pressure to see each patient.

For these reasons, and others, it is clearly unrealistic for consultants to address the question with every frail or very elderly patient, but nevertheless the proportion of patients to whom we have a responsibility to
initiate this engagement is surely growing.  It is not a callous trend; it has nothing to do avoiding active treatment – it is just an awareness that unless we bring the subject up there is a risk that our patients will be subjected to inappropriate, unpleasant measures by default.  

To me it is about finding the right form of words. It is also about balancing gentleness and sensitivity with the stark reality that resuscitation rarely works in the very elderly, frail population.

This is how I do it. It is not meant to presented as an ideal, and I would welcome other examples if medical practitioners wish to reply on the blog.

So, imagine I am seeing a 92 year old lady who lives in her own home. She has moderate aortic stenosis and mild kidney disease. She had a minor heart attack in her eighties. She has a chest infection. At a push she might have been discharged on oral antibiotics from A&E, but it is 10 o’clock at night and that feels inappropriate. She has been breathless for a few days and needs some time in hospital. Most would agree, the chance of her arresting is low, but the chance of her being successfully resuscitated is even lower. Should I bring it up? Well, I do. After the history presentation from my SHO, a brief physical examination and perusal of the drug chart, I say,

            “Mrs Evans, I’d like to discuss something with you. It may sound rather pessimistic and serious, but it is important that we talk about it. I need to ask you about what we should do if your heart were to suddenly stop. As you probably know, for some patients we try to restart the heart with compressions on the chest and electric shocks, but we do know that this does not work very well as you become more frail, or of you already have problems with the heart or the lungs.

            “It’s important that we understand your feelings about this, and write it in the notes so that other doctors can know what to do if something like that were to happen. But I must emphasise, that based on your results, the blood tests, heart tracings and the chest x-ray, I don’t think there is a very high chance of this happening. But I like to ask all of my patients  – as it is an important subject.”

I have had many responses, across a broad spectrum:

Bewilderment:

            “Oh…I’ve never really thought about that before doctor. I didn’t think I was that unwell.”

Defiance of mortality:

            “Well I want to live as long as I can. I don’t want to give up that easily.”

Fatalism:

            “Whatever happens, it’s meant to be…”

The ‘old fashioned’, those who are comfortable with a thoroughly paternalistic style:

            “Do whatever you think is best…”

The sure:

            “No. no, I definitely wouldn’t want that, I’ve had quite enough time.”

And the hesitant,

            “OK doctor, but I would like to discuss with my family. They would want to be involved.”

The latter response presents a further challenge. The patient clearly has capacity to express their wishes. But, presented with this dramatic scenario of the heart stopping, they immediately refer to their loved ones. That is natural. Where else would you turn when suddenly confronted with an image of dying. Thus, another step has been introduced. It is vital that doctors do not proceed unilaterally, and only the foolhardy or unthinking would do so. But compliance with the patient’s wishes, and all guidelines regarding end of life decisions, must be balanced by honesty; why was I asking that ques
tion? Because I knew what I thought the answer should be. I asked it because I did not think that resuscitation would be successful or the right thing to do. Therefore, my question was a loaded one, even though I approached it in a very open manner. Now my goal, that of ‘achieving’ a DNAR decision, has been postponed. How do I proceed?

I may push a little harder, acutely aware of the danger of coercion.

            “Well, it’s understandable that you would want to discuss it with your daughter, and I am certainly happy to wait for you to do that. But I do think it is important that you tell us what you think and that we tell you what we think. Again, I have to say that I’m only bringing this up because I don’t want there to be any confusion should your heart suddenly stop. And although it hasn’t given you much trouble recently it’s only sensible for us to go into it. The trouble is that based on our experience there will be only a small chance that we could get your heart beating properly again, and there would be a possibility of damage to the brain or prolonged recovery on intensive care with mechanical ventilators etc. Have you thought about this sort of thing before, at home? Some people have seen friends who have needed life support machines…”

The patient still prefers to wait and discuss it with family members. What do I do?

In situations where there is no urgency, such as the scenario I have described here, I let it go. I will have done a good job in introducing the subject and bringing the family unit together to think about this important decision. That is a difficult word – decision. Although I have tried not to portray it as a simple ‘yes’ or ‘no’, there is now the danger that the family will meet on their own, without a member of the medical team to frame the discussion. The end result, and I have seen this, may be that the next of kin approaches a ward nurse later to say,

            “The consultant asked my mother to discuss resuscitation when he saw her yesterday. She’s has a good think, with us, and she has decided you should do it.” Now, having appeared to transfer the onus of decision making to the family unit I have misled them. They believe that the decision is made, but in reality the outcome, ‘for resuscitation’ remains medically inappropriate – in my view.

The situation is more difficult when I feel that the patient is unstable and that a resuscitation decision would ideally be made before they leave the department, or at most within 12 hours of arrival in the medical assessment unit. In these circumstances waiting for the family to come in and for a full discussion to take place is difficult. Here the medical view begins to predominate…and it is here that we risk bulldozing patients into an assent.

If I have made up my mind that resuscitation is definitely inappropriate, and the patient remains ambivalent, there is a temptation for me to give more and more depressing detail about how poor this treatment is, who violent, how brutal, until they submit and say ‘OK Doctor, I respect your opinion, I had no idea it was that bad… I don’t want that to happen to me’. The end result is an appropriate decision, and an appropriate document will be placed in the notes. However, this approach risks later complaints from family members who feel differently, or more importantly know that that the patient feels differently. It is this combination of circumstances that has resulted in court appearances for doctors and their trusts.

So what do I advise now, in the case of an unstable but still capacitous patient? The patient remains ambivalent…but I am certain. Clearly the family need to be brought in. But there will be a time delay. I am committed elsewhere with other emergency patients. Do I risk being diverted away from this important decision so that it remains unresolved until the next working day? What if the patient does arrest. They will be resuscitated by default. They will probably die and I will feel guilty that I allowed inappropriate, uncomfortable and undignified treatment to proceed because I did not have the courage to fill out the document. I did not have the courage because I knew that I would be opening myself to criticism by the family if they had not been involved and disagreed.

So I call the family myself. I get through to the nominated next of kin, whose details are listed in the notes. I explain the need to further this discussion. It is a difficult situation because the patient has capacity and I am not asking for their ‘substituted judgement’. But the patient is ambivalent and I do need assent. So am I asking family members to take the place of the patient? No – I am seeking consensus. And I am protecting myself from accusations of bullying and over persuasion.

The person I call may be just as ambivalent. They may be even less likely to have considered the question of end of life care as it relates to their parent, because they are younger. So what I am doing is forcing an accelerated emotional and intellectual engagement with a very difficult subject. It feels a little cruel. But I steel myself knowing that it is necessary and that if the end result is a peaceful death for a patient who would never recover from CPR then I have done a good thing.

Will I ever fill out a resuscitation form without waiting for a consensus? I will if I know that the patient is deteriorating and likely to die within hours. That is because the natural history of disease has revealed itself as irreversible and inexorable. Nature has revealing itself and death appears certain. In this situation resuscitation is irre
levant, and no doctor would allow it to happen.

In conclusion, I have attempted to portray the subtleties, challenges and risks of early resuscitation discussions. It would be a lot easier if individuals gave a thought to end of life care before they become patients, but it is easy to understand why the issue tends to come to a head only in the context of acute illness. Suffice to say, the difficult words that need saying after admission to hospital are chosen carefully, and however brutal they sound, the thought processes behind them are well intentioned.   

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