Presented by David Crippen
The Case: 67 y/o female never been sick a day in her life came to her family physicians' office complaining of XXXXXXXXXX. Workup ensued that revealed advanced metastatic cancer of the XXXXXXXXX. She was admitted to the ICU for stabilization of an acute XXXXXXXX and XXXXXXXX which resolved with therapy over a week or so. The tumor was deemed unlikely to respond to chemotherapy or radiotherapy but the patient and family desired to be aggressive. Chemo was to start and patient xferred to stepdown, bounced back the next day with a stroke, followed by another stroke and decreasing responsiveness. Now after two weeks, liver failure with rising LFTs and Bili and coagulopathy. Continuing low leve GI bleeds not fixed with previous sclerotherapy. Increasing confusion and obtundation. Then Pneumonia and decreasing respiratory function. On multiple antibiotics, blood and blood product transfusions, 100% bag mask. O2 saturation is 80%.
The attending internist and oncologist have a long sit-down with the family and tell them gently but firmly that there will be no further anti-neoplastic therapy and the patient should be aggressively considered for hospice. The family holds out for a miracle and continue to tearfully demand "everything" be done, including intubation, vasoactive support and CPR if needed. They produce an article in The Ladie's Home Journal recounting a tale where an advanced cancer patietn was told she had only weeks to live and spontaneous remission occurred and the patietn was alive and well ten years later. It is also noted that shortly before she became incompetent the patient was asked if she wanted "a breathing tube". There is some doubt if the patient understood the situation but was seen and heard by the family to nod her head yes.
The attending internist and oncologist met again with the family again and hung more black crepe. The family became agitated and upset and continued in their desires for the patient to have "everything " done. Shortly thereafter I had an interesting conversation with one of the Internal Medicine attendings in which he said something like this:
"Look......you guys are all about science. I am a medical artist. I have to consider all the psychodynamics of patient care. I rarely, if ever, have the option of telling patients and their families no for anything. I have learned never to do it. Why? because every time I do it I get grief. And I don't need grief. And when they get ready to sue, they focus on those that gave them grief, not those that seemed like they were helping. What do I care if this poor woman buys a tube for a few days and then dies. The family will feel better that she got "everything" and I will get points for helping them get their desires. She'll die anyway and when she does, the family will write me a nice card telling me how much they appreciate my devotion to them and the patient. If I buck their desires, they call a lawyer and tell him or her it was my recalcitrance that directly led to a bad result.
I have to take into account the possibility that "holistic" medicine benefits everyone and part of that process is me being helpful and not a thorn in their sides. YOU on the other hand are a strict scientist. The numbers are either there or they're not. YOU can bypass the inherent shortcomings of "holistic" medicine and be the bad guy while I continue to be helpful but not get in your way in doing the right thing." You are an outsider and in a perfect position to be the sacrificial lamb that gets objectives done we cannot do because we have evolved into positions where we cannot say no. They can't hurt you. You're outside the loop of Patient-Family-Family MD"
Then.......comments from the Oncologist (a VERY caring and gentle person who gets wrapped up in her patients lives and has an earned reputation for compassionate care):
(Tears in eyes) " I tried my best. I begged them to believe that there was nothing further that could be done and that the course would be progressive and rapid. I pleaded and I reasoned. There was nothing else I could do. I'm sorry (I will have to intubate her)".
Note: Interestingly, the family did NOT demand that she give chemotherapy after they were told it would not be of benefit. Had they done that, the oncologist would NOT have administered it. But she DOES feel that they should get intubation and mechanical ventilation from the Critical Care Service which is equally as futile on the basis of family desire. Why?
"Because intubation and ventilator care is more proximate to the dying process. I am within my rights to tell them I will not give her chemo even if they demand it because that treatment is far enough removed from the actual dying process. She will not DIRECTLY die from lack of chemo. My refusal to provide it will not DIRECTLY result in death. She will die from respiratory failure. SO they CAN demand mechanical ventilation because it will be the most proximate salvation from the ultimate cause of death".
What do you think of THAT? Should I march in there and tell them I will not practice bad medicine and worse ethics?
Rob Church:
We just went through an 8 day ordeal with a family in our trauma ICU (in NY), who based on religious objections did not want the ventilator removed. This family were born again christians who believed that when man (or doctor) could no longer intervene, God would. Our legal counsel advised us to make "reasonable accomodations" to the family - but no court has ever defined what reasonable accomodations are. We finally decided, after many an ethics committee, that 8 days of support and education was reasonable. We had already d/c all pressors, antibiotics, etc. Thankfully, we were going to turn the vent off at 10am, but the patient expired at 7am. I believe when we can no longer care for the patient - we still are obligated to help a family understand. I think 8 days was to long, but i don't think 2-3 days is asking alot to help a family accept something they will have to live for the rest of their lives.
Don Chalfin:
Hmmmmmmmmmmm ...... a potential Pandora's box.
I worry about what is driving this case and their motives and missives. It seems as if your colleagues are asking you to "treat them" and not necessarily the patient. It is not a matter of stating that you "will not practice bad medicine and worse ethics" because a statement to this effect seems to imply that there are times when this is the case. I guess it boils down to remembering that we are there to provide "everything that should be done as opposed to everything that could be done". What then is the concept of "everything"? ECMO, ECO2R? Laetrile perhaps?
This might be a case where the ethics committee (I hear the sound of Buddha gasping) may be of assistance to all involved .....Interested in how this plays out.
David Crippen:
Like the Flea says, they have evolved into relationships where they are expected to always say yes to desires. They are NOT there to buck the God given right of patient and surrogate autonomy. It's like Marine grunts. Every time they think for themselves, they get in trouble. So pretty quick they start thinking like Marines and things go better. Bucking family autonomy is just out of the question. But getting a sacrificial lamb to break them is perfect. the Lamb gets all the heat and they can just cluck in the background and continue to collect points. They are genuinely sorry bad things are happening but they are powerless to stop them. They are a one way valve.
"Bad medicine" means different things to different people. To those in a position of a one way conduit, bad medicine may simply mean anything that disrupts the flow of "holistic" medicine. And things go more holistically when patients and their family are HAPPY. If they cannot give patients and family good news, the next best thing is not giving them bad news.
EC Thompson:
This is a very difficult situation. I have been in a similar situations. My approach is to treat the patient in accordance with the family's wishes. Everyday chat with the family and tell them how the patient is doing. I have gone so far as to tell a family that I felt very uncomfortable taking care of their loved one because I thought the care was so futile. They came around about 24 hours after that discussion. The patient was withdrawn from therapy and the patient died several hours later. Interestingly the family sent me a thank you card for my "kindness and thoughtfulness".
Difficult situation. Sometimes you really do have to give the family time to adjust to the situation. Once they see that grandmom or pop isn't really going to get up and walk out they begin to listen to you. I don't think that the "I'm going to the do the right thing; damn the family" attitude is helpful. You really have to feel out the family. To be honest grandma was up and walking and talking 2 - 3 days ago. It is a big adjustment. Let them adjust. Then if you have done your job in 24 - 48 hours they will agree that further therapy is futile.
Stephen Streat:
Just to point out that all this plays very different if you are held accountable for best practice in the ICU by virtue of severe resource limitation and a widespread societal expectation that someone (an intensivist) will ensure that it is used for the greatest possible good.
You just say no.
In many places (eg parts of Western Europe/Scandinavia/Australasia) after you have said "no" a few hundred times they stop asking you to do silly things. I bet they don't even ask in South Africa/India/etc. I can only imagine with a shudder what Dick B would say in reply to this request. In the USA they keep right on asking and you guys keep right on saying "oh, yeah, just this once, for just this special pleading, for just this patient, just for a day or two, only to see everybody sweet, because it ain't worth the hassle, because I don't need the grief, because they're the customer, because someone else is paying, because its no skin off anybody's nose, because they will send us a nice card, because they need a few days, because it won't actually make any difference to the patient...". Don't get me wrong - I would be just as constrained as you obviously are but at least I don't have to be .... and I will fight to retain that privilege.
David Crippen:
Hospital attorneys are very clear on that point. Saying NO invariably induces customer dissatisfaction and that is a really big problem in the day and age of competition for paying patients between too many hospitals and too many providers. They will tell you right up front that the benefit on many, MANY levels is stunningly enhanced when you just do what they want than if you buck them.
Bucking them makes them mad, and then they take their business elsewhere, and they tell everyone they know what compassionless clods you are and also by implication what lousy hospitals you work in and how clinically incompetent you are. Then they tell the Channel 11 investigative reporter to look into you, and you find Mike Wallace sitting in your office. They write letters to their congressmen who then inform you they are keeping an eye on you. They write to the Joint Commission and they investigate you. they write letters to the editor of the Pittsburgh Post weeping bitterly over the fact that you denied their God granted RIGHTS.
HOWEVER, if you just smile and say: "You're in charge.....what's today's orders?", the patient will still die in a few days, on a vent, reimbursers will pay everyone for the effort because they fit the criteria for "critically Ill", everyone makes out like bandits, the family is happy that the patient had "Every" possible treatment and all go home content. They will tell all their friends how compassionate you are and what great service your hospital provides. They will write letters to the Editor of the Pittsburgh Post extolling your humanity. Others will seek you out for same.
Farhad Kapadia:
I wish the situation here in India was that we had the option to "say no", but it ain't.
Our "patients-clients-customers" are fairly demanding. Many of them are actually directly paying for this futile therapy, with no third party cushion. There is only one really long term solution to this. Not ventilating terminal patients for a couple of days till the relatives get used to the idea of impending death, as Ken suggests, not just saying no to relatives & referring physicians, as Steve can do. FLs internist colleague who claims he is about medicine & FL is about science is also missing the point. He, in his medical mode, with all psychodynamics included, needs to sit down & really explain futility. NO ONE want to offer their family futile care. They just find it difficult to see the issues clearly at such a difficult time.
The real solution is for the whole medical community to take charge of communicating with family about futility in an open & frank way. Here, we intensivists are at a disadvantage as we are often not the first point of contact with the family & our medical colleagues may have conveyed relatively false exceptions. More often, they may not have taken the trouble to sit with the family & explain futility & just allowed the situation to drift. The chance to prepare the family for the oncoming eventuality, is then lost, & we are forced to intervene in the midst of some crisis. Buried in the bowels of my computer somewhere was a lovely post by FL in identical situation where he was really the first to explain futility after much hand wringing. The family then asked why they were offered the option of ventilation if it was futile in the first place. There lies the problem. The physicians involved in the initial contact did not consider it their job to explain futility.
In India, it's going to take a long time to get to this stage. I once wrote an editorial titled "ICUs: A place to save lives, not a place to die". Even close medical colleagues of mine vehemently disagreed with me in principle with the usual accusation as to who was I to play God.
Two days ago I admitted a lady who vividly describes the inaction on the part of our medical community in dealing with issues generated at the terminal part of life. A young lady walked into the ICU insisting she speak to me. She informed me that granny who is 98 is very sick & needs to be in ICU as she really wanted to reach 100. I gently but firmly informed her that we would not be admitting a 98 year old in our ICU. She then went on to plead that could granny at least get clean hygienic care in our hospital as she was in an overcrowded nursing home. There, they needed the family to keep running out to get drugs, food etc. & the family was not coping. I agreed to admit her to the hospital, outside the ICU, with the understanding that we would offer full medical treatment of her bronchitis, but no aggressive ICU care like ventilation. I again confirm that she is not on a breathing machine. They reiterate that they want everything done & I clarify that we will do everything appropriate & no more. The granddaughter has NO problem with such an approach. To my dismay, she reached our casualty intubated & on a T-piece. One of our hospital rules is that all intubated patients are kept in ICU so, against my initial plan, I had to get her into the ICU. Another long talk with family. Not wishing to appear too hasty, we extubate her the next day, & she passed away peacefully last night.
I spoke to my colleague who had her intubated before transfer, & he threw his hand up stating that the granddaughter had insisted that every thing be done. Rather than further explore the option of do every thing till the point of artificial support, he allowed the situation to drift to the point of intubation. The family, when given the choice of no intubation, fully concurred. Only, they were NOT given that option in the earlier phase of her illness.
And so we continue to do futile work & hope that slowly the culture will change.
Stephen Streat:
Farhad has made it clear to me that India is not immune from this sort of problem. I take his point about "explaining to the family" and this is something that we do when necessary and that we also get the referring physicians to do. We don't just say "no" without explaining "why" and without offering alternative positive suggestions (such as addressing end-of-life issues for example).
However, and I think this is a crucial semantic point, we do NOT use the term "futile" to either the patients, families or referring doctors. There are many reasons for this - some of them have to do with the emotional resonances of words (some of you may remember neurolinguistic programming) and some are because of the crazy way that this word in particular can be interpreted by some (eg - "a further microsecond of life-preservation is worthwhile - no matter what it takes"). You have all heard David Crippen relate hearing this sort of view often enough.
I think that it is "unreasonable" to take patients like the one David presented - not that it is "futile". I find it easier to explain the meaning of the term "unreasonable" or the concept of "reasonableness" to medical and lay people alike. It deliberately introduces a "comfortable feeling of fuzziness" which accurately reflects the uncertainty that we all have to practice within.
"Futile" however is such a binary word - it has no shades of meaning. It is black and white. It shoots ourselves in the foot. ("Have you never ever heard of a case where a miracle occurred, Doc ? What about the guy from Pittsburgh who was fished out of the river in midwinter and was damn-well dead frozen ! I bet those docs said it was futile too and now look at him, driving a Ferrari around the suburban bars with the best of them"). I think the word "futile" also has a certain layer of "judgment" associated with it. ("Oh, yeah, and just who are you to decide that this action is or is not futile?"). It is not emotionally neutral - it invites disagreement.
"Unreasonable" however has a common usage meaning which allows people to identify with it in terms of everyday experience. It means "contrary to everyday common experience". It also has another shade of meaning which deliberately echoes laterally - "contrary to principles of natural justice". Perhaps this meaning is more helpful in ex-British colonies where the concept of the "reasonable man" is such a part of common law. I use it to help to appeal to peoples sense of what is "morally right" as well as what is "in keeping with common reason".
It is unreasonable to expect that there will be a total lunar eclipse every night (but we will see one in seven hours time). It is unreasonable to expect that pigs can fly - despite Pink Floyds accouterments at concerts. It is reasonable to expect that most commercial airline flights arrive safely (but a few don't and everyone on board dies). It is unreasonable to expect that unlimited wealth can buy immortality. It is unreasonable that admitting this patient will change the outcome (death in a short while).
Admitting the patient to ICU will then (as I said earlier today when referred an 84 year old man with progressive paralysis and hypoventilation from GBS despite a week in hospital and immunoglobulin) merely change the venue of death and unreasonably prolong the process of dying. Some people think that that action (prolonging dying), in and of itself, is not a futile result. It would not help to call the action futile. Discussions about futility have for me an awful resonance of theological discussion about angels and heads of pins.
I can therefore, say softly, firmly but compassionately and mean every word - "It is unreasonable to admit this patient to ICU. It will not alter the outcome, it will subject the patient to loss of dignity (invasive instrumentation, lack of family contact, loss of ability to communicate, dependency on care givers and machines, "objectification" of their humanness in some sense) without the counterbalancing reasons that we usually do this for (returning the patient to independent health), it will not address the issue of the end-of-life care needs of the patient (many of which are non-medical) and finally, it will deprive other people of opportunity to benefit from the ICU".
It is rare for this approach to lead to confrontation. The very use of the words "reasonable" invites consensus, I think, rather than confrontation. We can and do say to referring doctors "Do you think that we are being unreasonable ?" - they usually stop and think for a moment and say "No, we don't think that you are being unreasonable". Sometimes it can then help to say "Would you like us to talk about this with the patient or the family ?" - mostly, having achieved consensus with us they say "No, that won't be necessary - I'll go and talk to them myself".
Furthermore I think there is another issue at work here too - I suspect that we and our colleagues, patients and their families are afraid to confront head-on the prospect of imminent death and communicate clearly and compassionately on this point directly with the patient and the family. We do not like to lead this conversation but I think that we have to - in the end it is what most of the patients want someone to do -- give them good, realistic information in a compassionate way and provide support (good "end-of-life care" NOT "intensive therapies") at their time of greatest need. We can (and should, I think) lead this stuff with our referring colleagues too.
Farhad Kapadia:
I take your point about the semantics of the term futility. I still think its a good term if carefully explained to the family. I always say, to patients, families & to my medical colleagues, that there is no 100% certainty in ICU medicine, (with the exception of brain death). Futility is used in this context. When I discuss these issues with my friends, who also happen to be docs, I realize how far ahead we intensivists are in taking the lead in dealing with these difficult issues.
Anonymous:
Apologies for replying off list: our group prefers to remain low-key at the present time. I am one of 5 attendings who work in a 42 bed unit in a comprehensive cancer center in Texas. We treat only patients with cancer: half surgical and half medical. Naturally we see a lot of this type of problem and you have my full sympathy: nobody ever wins in cases such as these. We deal with this sort of thing by calling an ethics consult, which is held with the family, primary team, ICU team, social worker and anybody else who cares to come along. It is chaired by a clinical ethicist or their deputy, which is usually a senior member of the hospital faculty who has had absolutely no input into the case thus far, eg it might be a surgeon in a leukemia case.
Everybody gets their say, and the wishes of the patient are taken into consideration if they are known. In a case such as this where all the physicians agree that the care would be futile then the family are gently but firmly told that we are not happy (or legally required) to provide futile care, but if they can find someone else who is then we will assist with transfer (at their expense). If they are unable to find such a person (and they usually are) then that usually persuades them that the situation really is dire. We are blessed with a miraculously low litigation rate here, for reasons which remain largely unclear but are probably related to the "last chance" effect, and thus legal issues rarely play a part in the medical decision making process.
EC Thompson:
Suppose David does get the ethic committee involved. Suppose that they agree with FL. Now what? The family still insists on having "everything" done. You haven't really changed anything have you?
David Crippen:
Well, that's a very interesting question. Traditionally Ethics Committees have been viewed not as arm-twisters but as clarifiers. It is common for patients and their families to view physicians in starched white coats as authority figures and filter everything they say as if a traffic cop were talking to them. The theory goes that if they get the same concepts explained to them by a cross section of society, including members of their own peer group, they understand situations better and might be more inclined to "do the right thing", ie: what the Ethics Committee is trying to explain to them. Ethics Committees are there to explain options to them in terms they can better understand, not necessarily to them to follow someone's hard line.
So whether an Ethics Committee consult has any potential to generate any "change" in their attitude depends on two things. How committed families are in their attitude and the biases of the members of the Ethics Committee. It can act just like the Supreme Court (of the US). Decisions are handed down on the basis of the predetermined voting predilections of it's justices and the political predilections of who appoints them. Presidents pack the court with judges known to lean toward "their" particular political dispositions. So in any vote, the result usually be as predictable as the number of justices known to favor or disfavor that particular issue or sub-issue.
In an Ethics Committee consult, it is not uncommon for the individual biases of whichever individuals selected to talk to the family to be expressed. If that happens, there is little difference between them confronting a family and a biased individual physician doing so. there are also inherent "group" biases of the Local or regional cultures. So to answer your question as fairly as possible........If a family gets a talking to by an ethics committee and persists, the Ethics Committee is not there to persuade them to change their mind and may not be any more "effective" in completely unbiased option-giving than me.
Tim Buchman:
Several threads are weaving an interesting tapestry displaying diverse approaches to the shared issues of end of life care and decision making. I offer a few comments.
1. I am unsure whether families are ever prepared to make "medical" decisions. Whether a family can even define "doing everything" is often an open question in our unit. My general feeling is that the family's role is to express and interpret the patient's system of values particularly as regards quality of life. Ceding medical decision-making to laypersons who happen to be relatives is, in my opinion, a dereliction of duty. The exception to this is the situation where there exists a durable power of attorney for health care, and a particular layperson (relative or otherwise) has been charged -by-the-patient- to speak on his/her behalf. My own power of attorney names a friend who happens to be a physician to act on my behalf should I become incapacitated. He and I have had an explicit conversation about limits, and I know he will respect my wishes. The value of a power of attorney cannot be overstated, and in an ideal world, such a document would be routinely prepared and executed by every competent person.
2. In an academic center, I work for a Department of Surgery. I am not paid "by the patient". I am a salaried physician. I am often called upon to make difficult decisions, decisions that are occasionally unpopular. If I were measured on a decision-by-decision, patient-by-patient basis, I expect that I would not fare very well. Fortunately, from the perspective of a managing a scarce resource and trying to do the greatest good for the greatest number, I fare reasonably well. While the importance of particular case review to highlight difficult problems encountered in practice cannot be adequately evaluated, evaluations of individual physician performance probably should not be driven by individual cases except where routine care was distorted far from the routines of care. End-of-life care is so much a part of our routine care that it seems silly to judge any care givers' performance on a single case. I certainly cannot, would not and will not judge my junior partners by the number or virulence of "dissatisfied customers". Monthly mortality and morbidity reviews that are specific to the ICU have proven essential to recognizing that each of us has our share of families who are slow to acknowledge that escalation of care will not change the outcome and who are often predisposed to venting their frustration and anger at the nearest white-clad authority figure.
3. The issue of "finding another physician who is willing to take the patient" is an interesting one where the ICU doctors function as a group. We have circumvented this by holding a weekly "long stay/disaster patient" meeting where the senior nurses and ICU faculty come together to discuss every patient with an LOS >10 days and/or looks like a futile situation. The attending of the week gets to hear a lot of points of view. More often than not, consensus is rapidly reached about each patient. The recommendations can then be presented to the primary MD and shared with the family as a consensus recommendation. I am not suggesting that care by committee is a "good thing". However, the value of this preemptive meeting is assuring families/primary MDs that the case has been explored by the entire group has been apparent: we have not recently been faced with the "find another MD" question.
Ted Rogovein:
I am told by our ethics people that it is MY (not the family's) responsibility to find someone to accept the patient in transfer. Your comment seems to suggest otherwise...how does a lay-person go and find an attending Critical Care doc to accept a patient in transfer?
David Crippen:
Therein lies the paradox. The family seemingly has enough expertise in the prognosis and advanced treatment of life threatening disease to disregard and override the experts. But they don't have enough expertise to find another expert to deal with it if you try to sign off the case for ethical considerations.
Therefore, as always, the final responsibility is yours to do everything on both ends. They have the authority to practice "folk" medicine by proxy and can override any clinical decision you make. But if you want out, it is YOUR problem to find someone else that will do THEIR bidding. If someone else willing to do that cannot be found, you remain bolted to the saddle.
Aftermath - David Crippen:
Once it became apparent that I was being led to the front of the pack as a sacrificial lamb, it became obvious that this was an untenable position for me to be in. I would be the focal point of all the anger and frustration and I would necessarily be a perfect target for any retribution. Of course while the others offered moral support but stayed safely in the background. So it WAS necessary to get an "official" Ethics Committee to clarify the issues and the players.
Now, this particular Ethics Committee is heavily steeped in the culture of patient and surrogate rights. They believe that the lesser evil is always to go with patient and surrogate autonomy if stated, and for physicians not to make paternalistic decisions on what is best for them. So their wishes are always rubber stamped no matter how outrageous. If this patient had demanded ECMO while waiting for God to personally come to earth and save him just to show me that miracles DO happen, someone on the Ethics Committee would make a call to see if it was possible. I have yet to see it fail in the 12 years I have been them in action.
So, a EC consult was duly called and their representatives arrived, viewed the chart, the patient and family and quickly came to the conclusion that their wishes were clear and I had no business interfering with the autonomy of the family unit. That their wishes were absurd did not enter into it. It was their opinion that more harm could be done from me interfering with their autonomy than just doing as they say and letting the patient die in due course at a later date. The patient was duly intubated and now resides in the ICU unresponsive to any but deep pain, established liver failure, active but subacute GI bleeding requiring 2 units of PRBCs in the last 24 hours to maintain HCT, and escalating renal failure. I subjugated my own biases to the biases of a larger group that has more power. As per their wishes the patient did not die on her schedule. She will die on theirs.
EVERYONE is unhappy. The attendings, the nurses, and me. The Ethics Committee feels bad that this patient is made to suffer and for their part in it but, after all, there are principles to be upheld here. They feel the same way a judge feels about letting criminals off on legal technicalities. If they let individuals micro manage ethical principles, the result will be anarchy. As a result of their upholding seemingly global ethical standards, ONE player threw a monkey wrench into the entire gearbox of medical therapeutics and stopped it cold.
And I can assure you that this is not the end of it. The politics of appeasement are historically clear, as Chamberlain found out in 1939. When ground is given up by force, there is always more ground to gain and more incentive to gain it. The family is now very interesting in assuring the patient is "fed". That means hyperalimentation since it is doubtful an enteral feeding tube can be passed beyond the tumor mass which is bleeding. They are also concerned that she maintain a full blood volume, which means open ended transfusion, fresh frozen plasma and platelet orders. The demands will match perceived need. The patient will only die when there are no more imaginable therapies to add. And like the American Civil Liberties Union, the Ethics Committee will be there to insure we all comply.
That is unless they "see the light" in the near future. And what's incentive to do that? Virtually none because we allow futile therapy to enter the conversation and then decry it. They have nothing to lose and everything to gain. They ask us if there is ANYTHING that we can do to save the patient and we say: "Well, not really..........by the way, if she stops breathing do you want us to intubate her and put her on a ventilator? It won't be of any value and we don't think we should do it but it is your option if you choose it". or "Not really.......by the way do you want us to dialyze her when her kidneys fail? It won't be of any value and we strongly recommend against it...but it is your right if you choose it".
This morning her creatinine rose to 3.9 and the family asked for a nephrolgy consult to consider dialysis. They are very concerned that he get his daily Vitamen B-12 injectionti
Hans van der Spoel:
Because ICU medicine is not regarded a distinct specialism. So for whom it is apllicable: make your ICU a closed ICU: a theatre, for which you sell the entrance tickets, and where you are the only one to compose the program, ask if necessary another actor to do his trick if yoy cannot do it or don't have the hardware for it, and you are the one to say when the show is over. To get your own closed format ICU (apart from manpower problems and many thing in the US regulations and laws I am not aware of): convince mono organ doctors with you results (both good outcome and bad outcomes), preferably in an prospective way (" allright, I'll admit this 99 your old lady with ...., I'll treat her the best I can, but I predict she won't leave the hospital alive"). In this way the MOS doctors must get on your side, and then you are able to discuss together the futileness of the admission with the patient / family. However, this solution will be too simple for your situation.
Leslie Whetstine (Ethicist):
If I were on that particular Ethics Consult I would (given the information we've been presented with) agree with their conclusion. The patient was apparently fine just two weeks prior, how can anyone expect a family to cease and desist so readily? They haven't even had a chance to enter into a stage of denial let alone acceptance. There is call for sensitivity and patience, I think once they come to terms with it (OK, I know that's not the most definitive time line, but what is in this realm?) I'd be more secure that they would not torture their family member for the sport of it.
More important, I'm not sure why you would think the patient was "led" in her response to be intubated. If I were 67 years old with no prior health problems and found myself in an ICU I doubt I'd think twice about that question--of course I'd want everything done! I realize what you're saying, that the interventions the family wants really aren't efficacious in reversing the illness, but this is a different type of case from the usual ones that we see--ones where the 110 year old patient who's been trying to die for the past 6 months is being kept alive per wishes of the family. This is altogether different and requires a separate analysis.
The EC was right, patient autonomy needs to be respected, this patient verbalized a request that shouldn't be dismissed because you've deemed it 'absurd' because if it really were objectively absurd we all know you couldn't do it because then it would fall under the parameter of authentic futility, and I know nobody is claiming this treatment is futile (it it were, we obviously wouldn't have a problem).
In the past I've frequently piped up loud and clear about the ethical problems of expending scarce resources on persons who will not benefit from them. I'm not changing my tune, I still argue that scarce resources need to go to those who are most likely to benefit. However, I need to emphasize that that works in application on a micro level, not macro--not here yet anyway. Every case needs individual attention, I think individual circumstances need to be taken into account, that's what takes medicine into the humanistic aspect of existence, not just the scientific.
David Crippen:
So you seem to be saying that the length of time a person goes from normal-to-moribund should be inversely proportional to the length of time needed to maintain them in an ICU on life support that prolongs their death while the family gets used to the idea. The compassionate thing to do is to let them have an extended period of time at the current rate of $4000.00 per day for ICU care until they feel better about the obligatory dying process? Why cannot the exact same process occur with hospice at $500.00 a day or less and the patient made comfortable during that grieving time instead of a tube or an appliance stuffed into every orifice in a room that runs full tilt 24 hours a day with noise and confusion and limited vising hours?
Leslie Whetstine:
I think you're generalizing, it needs to be more individual oriented as I suggested ealier. There are no universal formularies that I know of that will always work. I think in this case, time needs to be given a greater consideration.
Why can't the same process occur in hospice? I dont know why, because dying persons and their families aren't always able to be objectively rational I suppose. It's part of the human condition to experience emotions that aren't easliy defensible, I hope we're not losing sight of that in the dying process.
Lou Brusco:
I long ago ceased to get excited about these cases. Sure, they annoy me, but only because I hate to see patients suffer unnecessarily, and only because I do not like taking extended care of patients who I know are going to die.
The hospital you work at either has a commitment to patient care or it does not. It either cares about wasting money unnecessarily or it does not. I am blessed with a hospital that listens to me on occasion, and usually, when I need something to take care of a particular patient, I get it. For example, if I have an overflow situation, and I need to make an extra step-down area on a floor somewhere, I can usually get the nurses and space and move patients out of the ICU to make room. It helps to have a hospital that used to be 700 beds that is now 350. So when I am faced with a situation like this, the decision making process does not include more needy patients waiting for ICU admission.
You can only do your best. If the hospital cares about losing money on a patient like this, they will back you up, and they will get the Ethics Committee, Patient relations and Social Workers to help you deal with the patient's family. Then you can make the decision to not intubate with the backing of the hospital. If the hospital does not back you up, then you are stuck.
I usually get that backing. Last week, I did not and it is a worse story than yours. I had a 27 year old female who slipped and fell while rollerblading in Central Park. She came in with a small subdural, no shift, bilateral frontal contusions. She had an ICP monitor placed, it was about 5 for three days. She woke up and was extubated. The ICP monitor was taken out. The next day, she complained of headache and nausea. Head CT was unchanged. She got mannitol and felt better. We watched her the next day, and she was basically unchanged, more oriented but still with headache (she had a non-depressed occipital skull fracture) and some nausea. Then, at night, she went down the tubes. Became unresponsive, blew a pupil. Intubated, given mannitol. Head CT showed increased edema and areas of infarction. ICP monitor placed - now 80 mmHg. Patient given mannitol, lasix, and placed in pentobarb coma, which brought ICP down to 50's, but then back up the next day. Pentobarb coma stopped, brain death protocol started. Nuclear perfusion scan showed no perfusion.
Brain death protocol complete, patient declared dead. Heart still beating. Family approached (by other ICU attending) and told of death. Family not accepting, some of which due to language barrier (they spoke French) but mostly denial. They ask to bring in an outside consultant, who shows up before getting permission. He agrees with prognosis but says we should wait for pentobarb levels to be zero. Family balks at disconnecting vent before pentobarb levels zero. Wait two more days for level to be zero. Family approached again, they miss scheduled meeting. Finally, get together at 4 pm on day #5 after brain death - colleague tells them he is going to disconnect, he had given them 24 hours to get used to that. They counter that they are well connected with high powered rabbi's throughout the city, and their lawyers threaten law suits. Emergency consultation with hospital lawyers tell us to leave patient on vent. Hospital medical director, who is a medical intensivist, says that the patient's heart will stop soon anyway, so why not just leave it alone. Two days later, patient still on vent in ICU, sent to floor. Last I checked, she was still there, 8 days post brain death.
Stephen Streat:
I thought I would chip in on this "time to accept the idea of death" idea. Not many people like the idea of dying as a general rule and it is true that sudden death is often shocking and hard to accept for family members. Nevertheless, sudden death is part of the human condition. The median time till death after trauma is 10 minutes (airway obstruction, apneic coma, exsanguination) and we accept that. Sudden cardiac death is just that - "he was fine, eating his lunch and chatting and then he just keeled over and died". Subarachnoid or intracerebral haemorrhage is like that too - "he clutched his head and cried out and fell to the floor and now he's dead". Let alone "some lowlife came by in a speeding car and shot him and he was only getting the bread from the corner store". We often have to give tragic news to distressed relatives. We should concentrate our minds on how best to do that in such a way as to lead to understanding and acceptance. I cannot accept that the ICU is a holding pen where "those about to die" should park for a while in a holding pattern while their families get used to the idea that they are going to die. Hell, even without that option some relatives don't even accept the death till putrefaction sets in ...
David Crippen:
One of the things I have lost sight of in the dying process is why the oncologist is held to a different standard than me. The Ethics Committee let her off Scott free. She just walked away from this and has never been seen again. She told them further treatment was futile and she wouldn't do it. That decision will DIRECTLY result in his rapid death no matter what else is done for him. They thanked her graciously and did NOT demand she do it anyway just because they wanted it. No one called an Ethics consult to demand she give chemotherapy against her advice.
However, when I told them that intubation and mechanical ventilation was equally futile and against MY expert advice, they told me I was no longer in charge of ICU resources, they were, and I would do what they wanted even if I advised against it. And the Ethics Committee validated that position in perpetuity.
Why didn't anyone call the Ethics Committee for the oncologist's decision?
Leslie Whetstine:
I don't understand that at all. It doesn't make sense to impose compliance on one physician and not another--where is the consistency? Given this information I need to revisit my previous position. Without chemo am I to assume this patient will inevitably and quickly succumb to the cancer? To not make treatment of the underlying disease itself compulsory yet insist on intubation and even dialysis is incomprehensible. Perhaps the family does not understand this--is everyone communicating? Perhaps he will live an extended time without chemo, but in this case he should be transferred to a long term facility anyway. I'm very surprised that the EC did not address this issue, I see no reason for the family to readily accept the oncologist's advice but demand treatment from you that doesn't even assuage the primary problem. I wish I had a straight answer to this, but the incongruity has me at a loss.
Avi Roy- Shapira:
I think Leslie and the Ethics committee are mistaken.
The 2x2 table of authonomy:
Patient wishes
Indication yes no
Yes + -
No - -
If there is no indication for a procedure or treatment, patient's wishes are not important. One should treat only if the patient is willing, and the Doctor agrees. In this case the patient is willing, but the doctor disagrees. Medicine prevails. It has nothing to do with autonmy since it is not a value question. It is a purely technical, if sometimes difficult, decision.
Autonomy means respecting patients values. Not bowing to his /her every whim.