69 year old male,retired diplomat,presents with three day history of fever treated by family doctor with ampicillin.On admission is dehydrated,hypotensive and oliguric. Base deficit is 14. He is a past president of the Voluntary Euthanasian Society,and his devoted wife has his living will placed in the notes on day 2.
In spite of our best efforts and gorrillacillin and neutronbombamycin he continues to deteriorate and on day 7 is on massive doses of noradrenaline, 100% oxygen,continuous dialysis, and has blue hands and feet,two pregangrenous toes,an acute addomen, an ischaemic liver enzyme pattern,and the best index we can get in about 2.8L/min/m2. He has an acute abdomen and at laparotomy has free peritoneal fluid and dusky bowel but no ischaemic segment. We have grown no organisms. He has heparin induced thrombocytopaenia and is coagulopathic.Reduction of noradrenaline leads to a precitous drop in index and mean pressure. On Knaus's 3 organ failures on three consecutive days he has a predicted mortality of 100% and the figures for Lemeshow,Apache II are also 100%(if there were a hundred of him),and SAPS is 98% mortality.
His wife delivers this letter on day 9.
"TO ALL THE PHYSICIANS CONCERNED IN THE CARE OF MY HUSBAND In the 9 days since since my husband was admitted to RNSH I have watched his steady deterioration in spite of all your efforts to solve the mystery of his illness. I have now come to the conclusion that his life should not be prolonged unless by being kept alive and totally free of pain,he can serve a useful purpose in furthering medical knowledge which would be of benefit to others in the future. I know this would be his dearest wish"to do something useful for others" as he often said. After his death he wishes his body to be used for anatomical research and has signed a statement to this effect.I trust that after consultation amongst yourselves,and if you agree that there is now no hope that he can be restored to a god state of health,you will abide by his and my wishes and those of his family."
The name on the head of the bed and three of the four intensivists on the staff believe that he is unsalvageable and that treatment should be withdrawn. The fourth intensivist says that they are all pantywaists (I love that word) and that he has a gut feeling he can fix the man and therefore he does not fill the criterion of "no hope" and all treatment must be continued, in spite of the predictive criteria of another subset of pantywaists. The patient's wife says the chances are too low but concedes the patient is not suffering but tends to agree with the majority and reiterates a request for withdrawal of life support.
What should be done?
Daniel McNally
This is one example where the fact that one of the 3 is the "physician of record" is a substantial help. You have clearly expressed wishes, both directly and indirectly via family, and very good prognostic information that survival chances are essentially nil. Real life should be this clear more often. The hard part will be how to work as a group afterwards: can one of you set aside their conviction in support of a colleague's?
Arthur Caplan:
Time to stop treatment. There is a consensus albeit with a dissent about the prognosis and the data are clear as to prognosis. I can see no ethical basis for a decision to proceed to continue care with the facts as presented.
Aviel Roy-Shapira:
Enough is enough. Stop. This is such a hopeless case that I would have probably stopped RX for medical futility without consulting with the family (I would simply let them know)let alone when the patients wishes are so explicitly known. I might have lapped him sooner (with the same result - the acute abdomen is secondary to the shock) In our experience, patients like this who have a negative lap all die.
Malcolm Fisher:
I promise that the information I gave you about the condition of this patient was correct. The reasons the dissenting doctor did not want to stop he couldn't verbalise better than " gut feeling". He spoke at length with the wife and said he was uncomfortable,that the usual rule we went by was medical consensus before withdrawing. Iin the face of such opposition he would acquiese if she insisted,but wanted two days more. He assured her that the patient was not suffering and would not suffer She agreed to two days. 48 hours later the noradrenaline was down and on the ward round there was a second doctor who believed there was a chance albeit slim. The abdomen was not tender or distended and the Fio2 down to 60%. Mrs H and I agreed on two more days.
Needless to say the patient is alive and well six years later. He had his coronary arteries grafted three years ago and I was summoned to his bedside preop and delivered his living will. I explained the rules hadn"t changed,that if I could fix him I would and if I couldn't his wishes would be respected. He is a highly intelligent man and before moving overseas used to contribute to our Ethical Travelling Road show at which 95% of participants agree we should have discontinued care. He believes his wife,the other staff,and the dissident(me) all acted appropriately. He was adamant that the NO CHANCE part of his living will meant exactly that. He loves being alive and reckons a small chance is worth a run. Interestingly when I talk to the Voluntary Euthanasia Society most of them say they would forgive me for withdrawing care in error based on a predictve formula with a 20% error. But then there is a difference between the conference hall and when the blowtorch is on the belly.
I put this up not to show how clever I/we were because we /he were lucky. I think the things it illustrates are:
David Crippen:
The big question then becomes: How many patients predicted to do poorly are you willing to support in order to salvage one? Our tabloids are filled with miracle awakenings after a quorum predicted 100% doom. Most of these patients were incorrectly assessed. Some are fictitious. Occasionally a real survivor occurs. This is the frightening thing about futility decisions we make daily, most comfortably. Occasionally we are wrong. I ask again, how many warm cadavers is society willing to warehouse in order to assure 100% death when death is predicted? If we refuse to make futility decisions on the basis of an occasional mistake, are we then obliged to refuse to limit ANY care?
Malcolm Fisher:
When critics of what we do,and we are very open and public about it, raise this question the only response I can make is that the more opinions from educated brains you get and the longer you wait the less likely you are to make a mistake. The more militant the Right to Dier is the more forgiving they are of potential errors-for others! At the present time 85% of deaths in our General Unit are after withdrawal--people like the guy in question havent altered that but they remind us of our fallibility. Would like to discuss further but have a man with bleeding varices whose respirator needs turning off.
David Crippen:
Several years ago I recommended to an attending and a family that aggressive care be limited on a woman with hepatic encephalopathy. She was unresponsive, fully dependent on life support, not putting out urine, not responding to treatment and so on. Family insisted on continuation because she had previous episodes of snapping back. We did, she did and ultimately left the ICU alive. Not only did I look and feel like a jerk, I have been very wary of categorically rigid pronouncements of doom ever since.
However, one of our previous CCM-L cases involved a family that refused to let go of a patient without a single functional organ in his entire body. The chances of this patient even waking up were about the same as finding a herd of dinosaurs in a North Iowa woods. However, as hard as we pushed for them to do the right thing, we never categorically told them there was no hope. I think that is part of the problem. "Doctor..is there any hope at all?" "Well, the chances of survival are exceedingly slim but we are not willing to say there is no hope." "Great, that's what we wanted to hear...so lets continue to do everything as long as there is some hope".
If you present a family with a logically compelling situation involving someone elses loved one where there is little hope, they will invariably offer advice to do the right thing. Same family, same situation except it is their loved one...they develop a strong incentive to look for vanishingly small increments of the stuff. Especially if someone else is paying for it. This situation seems to me to cry out for some objective standards of what constitute "hope" by someone other than me does it not?
So Malcolm, how has this case affected your decision making process in dealing with the question of futility. If you had it to do over again, not knowing the outcome, would you do it the same way.
Don Chalfin:
We can all recount situations where, in spite of the best and the most humane and compassionate efforts by the caregivers, patients and families still elected to advise us to "do everything". However, as more and more time is spent with them, these situations become rare, albeit memorable exceptions, rather than the rule. I do believe, however, that part of the problem, at least in the US, is that patients and their families are often sold a bill of goods by very aggressive and "head in the sand" SODS who disappear from the ICU as quickly as they arrive and leave us to unscramble the eggs.
But, from a basic ethical point is that, in order to maintain the sanctity of patient autonomy, should not we be prepared to "bit the bullet" in these few exceptions? lest we risk loosening and diluting autonomy (and even independence)?
Tim Buchman:
Don makes an important point. However, I think that this position which essentially requires that we provide futile care on demand ignores the doctor side of the doctor-patient relationship.
I realize that what I am about to say is decidedly non-surgical and may be perceived as a wee bit touchy-feely, but I *do* become involved with patients and families during their illness. I try to learn about the patient's life before they became ill and I try to interact with the family and patient on planes separate from the acute illness. I therefore have no problem saying that futile care, when it is futile to all observers (and I always poll the critical care team to see if anyone has any bright ideas about reversibility that I may have overlooked) makes me uncomfortable. It's expensive and dilutes the efforts of the team on behalf of the salvageable patients. I generally offer to have other intensivists come in and review the case (avoiding SODS where possible). But I didn't sign on to prolong death, and I don't see why I should be shy about expressing my opinion that the care is seemingly futile.
The interventions we provide in the ICU are regarded by some as menu items from which families can "pick and choose". I think the concept ignores our fundamental obligations to always relieve pain and suffering, to preserve life where possible, and to accept our limitations and not prolong the process of dying.
Don Chalfin:
Thanks for the complement (I think). I'll take 'em whenever I get 'em. I appreciate your concern and the concern of others that we don't want our practice to degenerate into a pick and choose menu from which the families can freely select.
In terms of providing "everything", I interpret this as "every that should be done" as opposed to "everything that can or could be done". When the housestaff say to me that the family was approached and want everything, I ask the inherent question "Does everything include ECMO, IVOX, Ventricular Assist Devices, etc.? The blank, increduluous stares that this engenders the obvious conclusion. On a related point, its also quite interesting to me how many times a patient is made "DNR" after the catecholamines, the dialysates, and the 100% FiO2 are flowing freely. As we know but have a long way to go to convince our clinical colleagues who visit the ICUs, this is resuscitation. So much for closing the gate after the wallabies and the springboks have escaped.
Roger McSharry:
A story with a happy ending for Mr. H, but making our job as intensivists all the harder. No one would likely begrudge Mr H (or his doctor) two more days of care if lingering uncertainty prevailed as to the outcome. But if it were 4 days, or 2 weeks, or 2 months? The patient is clearly no help in determining when care is futile in this case, as he retrospectively states he absolutely meant NO CHANCE for survival as condition on his living wil ....he'd likely have bought into 2 months more........in fact, may have desired a consult with the cryogenics folks (hey, a small chance is worth a run....). I question whether there is any meaning to his living will, with the conditions he places upon it.
I'm in favor of agreement whenever possible before discontinuing care in the "hopeless" cases. I'm not sure what to make of opinions based on "gut feelings" by doctors...I guess these ought to be accorded the respect we give to these feelings in family members - acknowledged as real and im- portant and not amenable to logical refutation. It seems CCM-L generally agrees there are futile cases. What level of certainty of mortality should define futile care remains unanswered, in great part due to lack of adequate predictive systems.
For my enlightenment, and the sake of discussion, I ask this hypothetical question: IF a completely accurate system existed to predict mortality in the critically ill (mortality = will not live to leave the hospital), where would you draw the line of futility in a patient without any underlying terminal disease? Mr H draws it at 100% mortality.
Wrapup: Malcolm Fisher:
I appreciate the comments. I talked at a public meeting about this this morning. I do not beleive people understand how commonly we face such situations or the ways we deal with medical uncertainty. It gets worse. We have had for example threat of a legal injunction to stop us disconnecting a brain dead patient because the relatives wanted 48 hours to pray for a miracle. They acknowledged that death had occurred but were very devout and cited Biblical precedent. It is an extreme of the situation fearless leader talks about where they want you to say "no hope" and you cannot honestly do it. I have not seen a case of a Miracle I do not beleive in miracles. I probably cannot Categorically state that the do not occur. My research assisstant says they do--my wife is still married to me.
To Don Chalfin--I lose sleep over the ones we didn't pull out of who had bad outcomes. I lose no sleep over the ones we did who might have survived. The self fulfilling prophecy has its advantages!!!
To Tim Buchman-- I think this is another important two edged sword. You get close to the family to learn about feelings and wants and you get in a position where you can make them do what you want. The menu is also important. When the senior fellow says to me the patient"s family dont want dialysis I ask how many of them have medical degrees.Polling the critical care team,or involving colleagues you respect in the decisions that are difficult,rather than ethics commitees which are inappropriate becuse most issues are about medical certainty is the best chance we have to get it right,supported by current predictive systems(although their main use may be to convince the SODS) and local knowledge. At RNSH over 80,oliguric renal failure,inotropes and ventilator is 100% mortality. So you dont get dialysed. Although one or two do . Elective Aortic valves over 80 is 1% mortality so we do them but god knows how long and well they live.
To Roger McSharry. If I had a 100% accurate predictive system what I would tell families would depend on outcomes and probale functional capacity. 1% is worth a run in a 16 year old but not in a person with severe CAL and a malignancy. It may not make it easier but just shift the goal posts.
To Our Fearless Leader (have you given Hoyt that big kiss yet) I would still treat Mr H. The others would still not have treated him knowing the outcome. It hasn't altered the way we do it ,although occasionally in the deliberations on others. someone says "remember Mr H" Mr H has probably bought a few folk a few extra days over the years.
The other issue is your warm corpses one. Can I afford Mr H when Aboriginal perinatal mortality is twice white,or if I lived in the USA and was trying to achieve literacy in 80% of school leavers by 2000. Fortunately that is someone else's problem although I try to spend society's money wisely and await data that the money saved by rationing health care is to be spent as wisely by my masters. If they say greater than 90% mortality predicted don't treat I will go along with that as long as they clearly inform the voters. I wish I could provide the answers but there aren't any at this moment in time. But 20 years in this game you sure get a lot of questions.
NEW ETHICAL DILEMMA: Reviewed by Malcolm Fisher.
Patient is 57 year old female with CAL on basis of bronchiectasis. At time of admission heart lung transplant unavailable in OZ. Works as manager of company she owns-30 employees but only goes in 3 hours a day and can't get off ground floor.But is described by son as a very authoritarian manager-"She who must be obeyed" Over last year increasing dyspnoea but well managed by SOD. Three admissions for exacerbations over twelve months and this is first admission ever to ICU. Deteriorates in spite of agressive therapy and permission for personal physiotherapist to treat. Needs ventilation. When I explain this to her she declines it. "Do you understand fully what you are saying?" "I most certainly do young man and I have no wish to discuss it further with you or any of your staff especially religious ones.!" She is prepared to tell me she wants sedation if she gets very distressed but on her request only, and flatly refuses to discuss anything else although I am assured "My affairs are in order" . Her son and husband are present and say if that is want she wants it is okay by them.
Arthur Caplan:
I believe that patients should have their wishes honored but that some judgment needs to be used to deciding whether a particular wish is 'authentic'. Repeated requests over time, consistency with other attitudes about treatment, consistency with previously held values, confirmation by family and friends are some of those tests. I do not feel I have enough information to know whether she means it but I gather Dr. Fisher is uncertain. So I would initially wait and try to establish authenticity of the request not to treat.
If I was uncertain at the time she became incompetent then I would treat and start again from the initial request to establish authenticity should the patient recover suffic iently to be angry at still being here! I would explain all this to family so they do not feel they are in charge of her care should she recover and be competent and still request no further life-extending treatment.
Timothy Lee:
I agree with Art Caplan's response. I believe that patients have the right to refuse treatment as long as they are mentally competent and not severely depressed. However, allowing them to refuse treatment is easier if you know them and their family well. If you don't know them, and can't tell if this is just an impulsive behavior or not, then I think it would be better to be conservative and ventilate them once they reach a point where death would be imminent if you don't. Sure you are not obeying their request but you also don't have enough information to back up their request.
Mike Darwin:
I agree with Dr. Caplan on this one. An abrupt, incomplete and non-interactive conversation such as you describe is inappropriate. I would ask a question: Why did you terminate the interview at that point? Did the patient cover her ears or order you out of the room? What I would have said (probably in about the following order) is:
I am a strong advocate of informed consent and patients' rights. However, I also feel that the treating physician has rights, including the right to practice medicine consistent with his moral and professional judgment. For instance, if a patient presents with an acute belly requiring surgergy and he (the patient) says: Sure Doc, go ahead. But listen, I don't believe in germs and therefore I do not want you to use sterile technique. Also, I hate rubber gloves and can't bear the thought to be touched by them: so nobody can wear rubber gloves who touches me. Besides, I refuse to pay for those silly, useless things. "
Even if you have a long discussion with the patient and you find he has "reasonable" reasons for his belief (perhaps religious) and he understands the consequences if he is wrong and has reviewed the scientific evidence for the germ theory. That STILL does not obligate a physician to treat a patient using dirty instruments and no gloves. I see nothing fundamentally immoral in such a transaction (people so stupid should have the opportunity to get what they deserve). But I would not do surgery under such conditions and I would not have very much respect for any physician who did!
Incidentally, if this example seems far-fetched, it isn't. I've had really weird (or just cheapskate) requests from potential cryonics customers which I have refused. Perhaps even more to the point: go argue with some creationists (So-called Creation Scientists) like Duane Gish from Loma Linda. These people are smart, clever, good public speakers, and crazy as loons (at least from our perspective). Certainly they are not mentally ill by any of the usual criteria. Jehova's witnesses and blood products are a similar case in point, but due to advances in technology fall between the extreme cited above. It is now possible to treat and surgerize such people in ways that they do not need to be transfused and where the outcomes are pretty good. Some physicians now specialize in treating such patients.
Here it becomes a shade of gray issue because in some cases there is extra mortality and morbidity associated with some procedures because blood products can't be given. Of course, it can be argued that the patient who refuses sterile technique should be operated upon anyway and then given antibiotics if s/he develops an infection.
Malcolm Fisher:
Mike Darwin writes For instance, if a patient presents with an acute belly requiring surgergy and he (the patient) says: Sure Doc, go ahead. But listen, I don't believe in germs and therefore I do not want you to use sterile technique. Also, I hate rubber gloves and can't bear the thought to be touched by them: so nobody can wear rubber gloves who touches me. Besides, I refuse to pay for those silly, useless things. "
Hey, I saw a lady just like this last week. They ignored her of course. She nearly died from latex allergy
Aviel Roy-Shapira:
Malcolm Fisher asks: When I explain this to her she declines it. "Do you understand fully what you are saying?" "I most certainly do young man and I have no wish to discuss it further with you or any of your staff especially religious ones.!" She is prepared to tell me she wants sedation if she gets very distressed but on her request only, and flatly refuses to discuss anything else although I am assured "My affairs are in order" . Her son and husband are present and say if that is want she wants it is okay by them.
Can I withold ventilation on the basis of an interaction as superficial as this? Some of my colleagues are nervous. You most certainly can. This patient appears to be of sound mind and disposition She is clear about what she wants, and as heart lung transplant is not available, is also aware that the trip to the ventilator is on a one way street. She must have judged the quality of her life, and decided to call it.
I can't see how discussing this more would help at all. In addition, don't you think that autonomy also includes patient's right to discuss. Take a patient with cancer. Most of them want to know, but some do not. Can we tell them in spite of their wish not to know? I think that wish should also be respected. 16 hours later she is on her last lobes and in coma. Her husband and son insist that that she be ventilated. Her husband has a power of attorney. Question 2. Should I ventilate her?
This is a much more difficult question. A legal advice is indicated, since not all power of attorney's are equal. Some are valid only in financial affairs, and some expire when the signer is no longer competent. I am no lawyer, but I think it has to be an instrument called durable power of attorney. If the husband has a durable power of attorney, you have no choice but to comply. The patient had empowered him to make decision for her, and his wish is legally and ethically equal to the patient wishes. The patient may revoke the power of attorney if she wakes up.
Mike Rie:
Malcolm Fisher has spun the usual yarn of medical grey zone and no prior history of ventilatory decompensation with ablue bloater sputologic history and a new relationship of patient and provider. If The patient has hypercapnia or pseudo tumor cerebri at time of your precoma, chat with patient. Then, even a will to donate her millions of cases of Foster's lagar to the to the New South Wales home for wayward wanderers could be overturned in an American court. I suspect an Australian one as well should her husband claim first right.
But irrespective of legal issues, most pulmonary docs I have known would have gone with at least one episode of ventilator care unless the patient had a forcefull expression repetitively priorto this event. Especially if she had expressed the view based on deeply held views of the ventilator as a common law battery upon their personhood. Personally, I have such an advance directive and it covers notification of the local police that under the command of my surrogate criminal battery proceedings are to commence during my ICU stay. It was discussed on this list last year and published a few years back in the J of Medicine and Philosophy.
I had a case similar to yours many years ago in the 1970's with cerebral edema. My choice was to perform battery. The patient did not remember and I never got to go to criminal court which the hospital attorney said callously at the time only had a fine of $25.00.
I vote for intubation given the circumstances of the moment but I may vote to notify the authorities if Malcolm slides into a medical torture mode. Maybe even Amnesty International, depending on the follow up. By the way, with the last case I thought it would perk up the Aussie TV audience if Malcolm and the philosopher Peter Singer had a go at the last case.
Joseph J Sachter
If indeed the person was competent (ie: aware of their situation, and able to understand the consequences of refusing care), this is indeed the height of arrogance. Who defines what is "impulsive"? To condemn a patient to days - or even weeks - on a respirator, sedated, maybe even iatrogenically paralyzed, because a physician who first saw them felt their decision to refuse care someone did not meet his her or her standards is enormously troublesome to me. These are issues we routinely deal with in the Emergency Department, where we seldom know the patient.
My dad is in his seventies, and basically healthy. He is has made it clear on numerous occasions that he does not want to be placed on a respirator under any circumstances. This may not be what I would decide, nor even the most sensible view - but its his, and no one, Dr Hall, has a right to take it away from him. The decision to intubate/ventilate a critically ill patient is not one that be easily be undone, and one we should not make if there is clear and convincing evidence that it is against the patient's wishes.