26 May 2011

Ethics of refusing informed consent

In my Monday post, I posed a challenging real-life dilemma we recently faced in the ER. As always, I modified the posited case from the actual facts but the broad outlines were true to life: A young person of questionable capacity wants to refuse lifesaving treatment. 


Short answer, for those not interested in the discussion: This case is a no-brainer. You intubate. In this case, sadly, the outcome was not good. As I hinted, early hypoxia in the setting of blunt chest trauma is a bad sign. The patient was intubated, but became progressively more difficult to ventilate over the next couple of days and subsequently died. The family was at the bedside and, from what I understand, they were very happy to be able to be with him in his final hours. On the other hand, due to his drug abuse, he proved extremely difficult to sedate (even on max propofol!) and was agitated and combative, in restraints, until hypoxia began to take its toll. While I am confident I did the "right" thing, the tally sheet is decidedly mixed as to whether was beneficent in its effect.



A key concept here is whether the patient has the capacity to make an informed consent or refusal to treatment. There is a lot of vague thinking and hand-waving that surrounds this issue. I was going to write up an extensive discussion of the requirements for capacity, but my work was done for me by inwhiteink, and much better than I could have. So go read it. Her conclusion:

From the available information, it is unclear if the case patient could manipulate information in a rational manner for this specific situation. We do not know the reasons why he did not want to be intubated. One reason could have been his stated desire to die. ... It may be unfair to assume that he cannot manipulate information in a rational manner simply because he could not state reasons for refusing intubation. However, it is also unfair to assume that he can manipulate information in a rational manner in the absence of data.

Exactly. Contrary to the popular misconceptions, the presense of alcohol or opiates or benzodiazepines does not prima facie render someone incapable. Capacity is demonstrated by the patient's actions/words, as interpreted by a trained physician or other professional. A mental health condition (such as depression/suicidality) can render a patient "not capable," but again, you must show how their condition relates specifically to the treatment the patient wishes to undergo or refuse.

A second consideration is the gravity of the decision in question. There is an important qualitative difference between refusing lifesaving treatment and, say, choosing an outpatient cardiac workup over an inpatient workup. An observer needs a much higher level of confidence in the patient's capacity to allow the former. 

Context also matters. This is why I added the follow-on questions relating to the patient's age and the likelihood of death despite treatment. For example, a patient whose illness is likely to be lethal 98% of the time would not raise any eyebrows should he choose comfort care and refuse invasive curative therapy. Similarly, age naturally (for some) brings an acceptance of death. I have seen many a senior with a wonderful, serene acceptance of the approach of death. If a senior who was not evidently depressed said to me, "Doc, I've lived a great life and I'm with my family and I don't want to go through X," I can accept that as a reasoned decision to refuse care.

In this case, there were a variety of compelling reasons to over-ride the patient's refusal of care. First, this was a very serious, irrevocable decision. It was life-or-death, decide now, no takebacks. You can always withdraw care later, but you can't re-animate the dead if you change your mind. And, um, you can't change your mind if you're dead. The context argued for full treatment. He was young and not at the stage in life when most people view death with equanimity. He had a serious injury but with a reasonable expectation of cure. And I had a strong impression that his capacity was diminished. It wasn't clear-cut, but there was enough doubt that in this case I was not prepared to allow him to die. I would have allowed him to refuse, say, an x-ray of his knee. But not intubation.

So what are the legal and risk management implications here? 

First of all, as pointed out, there are real risks of allowing him to refuse care. Whether or not you get sued, a case like this in which a young patient dies will evoke strong feelings within the care team and the case will be very closely examined in retrospect. Your hospital administrator and quality committees expect that in such cases that all appropriate processes are followed and rigorously documented. Maria suggests a "second opinion" in such cases, which would be a very good idea. This is not just to protect your own ass, but also to protect the patient. When you are literally making life-and-death decisions for someone else, the function of a second opinion/risk management/patient advocate is to double-check your judgement. In such cases, you would be well advised to involve whatever resources are available at your facility - ethics team, chaplain, whatever. If you do follow all the steps, and you get sued after all, your defense will be much stronger for having done all that extra work and having documented the process clearly.

On the other hand, should you decide to treat despite the patient's vigorous objections, you are on much firmer ground. From a simple malpractice point of view, there is a civil tort involving "wrongful death," but not "wrongful living," at least not in this context. You can be at risk for a bad outcome based on delayed diagnosis, etc, but generally not on the theory that you should have allowed him to die. (If there is precedent to the contrary, I'm unaware of it. Childbirth is a separate circumstance.) Though assault and battery charges have at times been levied against physicians who impose treatment on patients against their will, traditionally the courts have shown deference towards the judgment of a treating physician, and have especially given weight to the presumption that preserving life should be the default approach except in clearly defined cases.

So, basically, you are safe in treating and at high risk should you allow him to die. While I would not advocate choosing a course of action solely based on perceived liability risk, this is a case where the ethics and the legal issues point the same direction.

The final point I would address is that of process. What do you have to do to over-ride someone's wishes, or, conversely, to allow them to die, if appropriate? It's not as simple as just holding them down and pushing succinylcholine. The first thing I do, after formulating what I think should be the plan, is see if there is consensus among the care team (meaning the nurses and any other doctors involved). If there is a nurse who feels strongly that you should NOT do something, that conflict needs to be resolved before you move forward. Similary, the family needs to be engaged, if possible, to assess their feeling on what should be done. If the stars align and everybody is in agreement on the course of action, then you're good to go. (Again, I am assuming fairly exigent circumstances.) If there are irreconcilable conflicts, either within the care team or with member(s) of the family, then you are going to need to go up the chain of command. In my facility that generally involves a call to the risk manager or administrator on call; your institution may vary in its procedures.

I'm not surprised that the comments/emails I got on this case were about 9-1 in favor of treatment. It was a no-brainer, by and large. But it was an interesting case because it illustrated the difficulty in assessing decisional capacity and the elements required to over-ride a patient's wishes. And I enjoy taking a specific case and using it as an opportunity to drill down to the essential principles involved. Hope you enjoyed it, too.


  1. This is so difficult. I believe in only what the patient wants as priority. Most nurses especially ICU and ER that I know well, have not involved family but have informed family of their own scenario wishes planned out in detail with another nurse or MD friend as POA. This is a great way as only medical people "know" certain truths. I want my needs/wants honored only. It takes a lot to try and ensure that this happens if you become ill and you are under 80 years of age. In some cases sadly a patient's wishes are easily overridden. A provider is always in the hotseat which is unavoidable.


  2. I am a fifty-two year old nurse with the usual assortment of HTN and osteoarthritis but nothing currently fatal. Nevertheless, and perhaps due to my clinical experience, I have a capital-letter phrase on my medicalert bracelet right next to the allergies and meds that states 'ADVANCED DIRECTIVES ON FILE WITH PMD AND FAMILY."

    They know what I do and do not want to be treated for, and how agressively....hoping this saves you from hard choices and me from prolonged suffereing.

    Dianne, RN

  3. FWIW, I liked this; it's interesting (as a layman) to try and have to put myself in the shoes of a physician, balancing morality, ethics, and the potential legal pitfalls of treating a patient. Hopefully, there'll be more entries like it!

  4. Thanks for these posts-- they give great insight into the complicated, delicate nature of treating patients. In the ER, you have to consider all these legal, ethical, human matters very quickly and not always with a lot of support. I really admire you docs.

  5. I would say that if it is determined that the patient has no capacity to make a decision regarding a life-supportive treatment(unable to demonstrate understanding of the procedure, its consequences and to give an explanation for the decision, the case should be handled as a patient who by being unconscious clearly has no capacity and the physician has to look to the legal surrogate, if any,or family members or friends to make a substituted judgment decision based on the views the patient has expressed in the past. If no surrogate, family or friends are immediately available, the patient should be intubated until these resources are found and a final decision can be made based on the history they provide. ..Maurice.

  6. I have never had, nor will ever have any form of invasive procedure including intubation. I also have an ad with that in there. If any medical "professional" chooses to ignore my wishes they will be in court for battery and false imprisonment. They will also be in front of the GMC so I would suggest they have a second career lined up. I decide what happens to me, noone else, certainly not so called medical professionals who think they are god.


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