Presented by David Crippen, MD, FCCM

In the ED she is sedated for intubation and non-verbal. She grimaces to painful stimuli. Does not open her eyes spontaneously and does not follow simple commands. Shortly thereafter, the faxed record arrives and the first page is a "Living Will" declaration signed and notarized in 1995 by the patient in which she states the following:

"I xxxxxxxxxxx being of sound mind, willfully and voluntarily make this declaration to be followed if I become incompetent . This declaration reflects my firm and settled commitment to refuse life sustaining treatment under the circumstances below."

"I direct my physician to withhold or withdraw life support that serves only to prolong the process of me dying, if I should be in a terminal condition or a state of permanent unconsciousness."

"I direct that treatment be limited to measures to keep me comfortable and relieve pain, including pain that might occur by withholding or withdrawing life sustaining treatment".

In addition, if I am in the condition described above, I feel especially strong about the following forms of treatment: I do NOT want......(cardiac resuscitation, blood or blood products, tube feeding or any other form of hydration or nutrition, intubation and or mechanical respiration, dialysis, antibiotics, any form of surgery. or invasive diagnostic test." "In addition...I do NOT want to designate another person as my surrogate to make medical treatment decisions for me if I should become incompetent."

Two blood relatives (daughters) arrive shortly after and both issue orders:

Relative #1: "The living will is very clear. I want her extubated immediately and made comfortable with morphine until she dies".

Relative #2: "Wait a minute now. On admission to the ED, she met the criteria for the living will to the letter and her wishes should have been followed. HOWEVER, following intubation and mechanical ventilation, my mother is very stable no longer "terminally ill". There is no other overriding reason why she cannot be extubated in a day or two and go back to square one. She now has a strong potential to improve on antibiotic and supportive care that she didn't have before the living will was ignored. Intubation changed all that. Mechanical ventilation is not prolonging death, it is bridging an unstable process so that she may anticipate life. Therefore, I say that the Living Will is no longer relevant. The act of placing mother on life support supersedes the terms of the living will and we are now in a mode to support her if the odds are such that she has a better chance of life than death.

What to do?

Jim Cowan:

She stays on the vent. She has an easily reversible condition, does not meet the criteria of having a "terminal" condition and has made it very clear she does not want surrogates making decisions for her. For all you know, she specifically had her living will written to protect her from predatory relatives such as #1.

David Crippen:

It isn't as easy as that. First, you have to ask yourself if she met ALL the stated criteria BEFORE the fact. Here are the stated criteria again:

I direct my physician to withhold or withdraw life support that serves only to prolong the process of me dying, if I should be in a terminal condition or a state of permanent unconsciousness.

If a patient enters an ED with an a- A gradient sufficiently bad to cause an SaO2 of 80% on 100% rebreather mask, that is "respiratory failure". If her ventilation rate is 50 with a tidal volume of 50cc because she does not have the energy to fulfill the maxim: "In ventilation, as in life, deeper is better than faster", then she is also in "ventilatory failure". Put the two together and she is definitely "terminal". Simply adding more oxygen will solve neither problem. So,it seems to me that under the terms and conditions specified, her wishes would have been in force.

then you have to ask yourself what the new criteria are after those terms and conditions were completely bypassed and now a radically different situation ensues. Her a - A gradient is now such that she sustains an SaO2 of 99% on 40% FiO2, and her tidal volume is 800cc; allowing the work to breath to be taken over by the machine. She is NO LONGER IN A TERMINAL CONDITION. She now is in a very stable condition and there is NOW an expectation that her condition will improve and the endotracheal tube can eventually be released.

But that is information you should never have known about.

Which is the most proximate force......what she wished (and authoritatively told you she wished) or what you think she might wish the second time around if her first wishes were ignored. What evidence do you have that she would wish any different with the after-knowledge that she might survive?

J.V. Divatia:

I have never read a living will in real life. However some thoughts that came to mind. The crucial statement in her living will is:

... I direct my physician to withhold or withdraw life support that serves only to prolong the process of me dying,

If the following statement "... In addition, _if I am in the condition described above_, I feel especially strong about the following forms of treatment: I do NOT want......(cardiac resuscitation, blood or blood products, tube feeding or any other form of hydration or nutrition, intubation and or mechanical respiration, dialysis, antibiotics, any form of surgery. or invasive diagnostic test..." is read in continuity with the first statement, I would infer that the listed interventions should not be used only in a terminal situation.

Would you consider a severe pneumonia as a condition that is almost certainly fatal, and that mechanical ventilation would only prolong death? If not, then intubating and ventilating her is not incompatible with her living will.

Andrew Shaw:

Since this is a straightforward lower respiratory tract infection which is probably entirely treatable with antibiotics and supportive care she is not in a terminal condition or a permanent state of unconsciousness. It could thus be questioned whether the living will applies at all. The treatment is being given with full expectation of a return to previous functional state and serves considerably more purpose than to prolong the act of dying. Moreover, it was started in good faith by the ER doc. Should she fail to thrive and develop complications then the situation changes. However, for a single organ failure which is eminently reversible I think you have no choice but to continue. Of interest and for discussion: what if she had been 28 rather than 88?

This changes the ethical side of the case, but not the legal one. The fact remains that she is not terminally ill and thus her advance directive is not relevant. You might argue for permanent unconsciousness if she has uttered only gibberish for a year. That would surely become an esoteric argument about what it means to perceive things etc and would probably not be helpful. In short you are between a rock and a hard place, until such time as you decide that her prognosis is bad enough to be described as terminal. This would probably be at the time her second organ system fails at which point you could argue that her advance directive is now applicable and thus pursue a palliative approach rather than a curative one, which is what her document very clearly states.

ECThompson:

I think the definition of terminal that most of us use is different. Using your definition all melanomas would be considered terminal. All colon cancers would also be terminal. I believe that most people feel a patient is terminal if reasonable invasive or non invasive procedures or therapies cannot salvage (return the patient to a meaningful live [as defined by the patient]) the patient.

Frank Breheny:

Easy decision. Do as directed, she may well live if she has benefited from the period of stability or she may more likely die but in a manner which is in keeping with her expressed wishes. The question must be asked why wasn't the existence of the 'living will' known before the institution of intubation. Very few procedures can replace a careful history.

Farhad Kapadia:

Here in India, one can see differences in dealing with end of life issues on a much more micro level. Some of my colleagues work in public hospitals & they essentially decide who gets ICU & who doesn't. The only ones who get to question the decision are other professional colleagues. In the private set up where I work, things are not so clear. By and large our colleagues explain futility to relatives before transferring them to ICU. Even if they are transferred to ICU, some limit on therapy is predetermined. However, we occasionally run into problems & are forced to offer futile therapy.

The only real difference between our private & public setup is that patients & relatives in the private set up have more choices that those in the public set up. It seem to me that this is the real difference in the comments we are reading. Comments form Canada & Down Under suggest that if the good doctor states that the 80 yr old COPD granny is not for ventilation, then that's it. This is financial good sense. It is advantageous in may other ways. However, it essentially removes free choice from patient & family. Free choice in this context may be a good or a bad thing, but I feel as a medical community, we need to ensure that a fair degree of free choice does remain with the patient and family. This will occasionally cause problems but will result in a healthier relation between the medical & lay communities in the long run.

Avi Roy-Shapira:

You can only judge by what is in front of you. Right now, the patient has no terminal condition. So you cannot pull the plug just because you think the ED doc was wrong. Two wrongs don't make a right. I am not sure that the ED doc was wrong, even if he or she were aware of the living will. I read and reread the living will, and found nothing that excludes short term ventilation, for an easily reversible condition.

Anthony L. Dewitt:

The physician cannot be charged with knowledge of a directive he knew nothing about. Living wills are advisory only, and the physician has an ethical obligation to administer such treatment as he deems appropriate in the situation where he is acting without information from the patient. The rescue doctrine and the doctrine of implied consent work to bless the intubation.

You ignore relative 1, and adhere to the decision of relative 2 because its easier to defend what amounts to a "battery" (exceeding scope of consent) than a "wrongful death" which is sure to follow if you adhere to relative 1's wishes. Moreover, involve hospital counsel (a sure recipe to bog down the process in 45 days of wailing and gnashing of teeth). Nothing will get done for at least 20 days and in that time you'll either get her off the vent and back to the SNF, or she'll take the ol' dirt nap. Also, please investigate the sudden decline of the NH resident. Did the resident receive normal reasonably prudent nursing care or, as I have seen recently, was she ignored for five days before being found "obtunded."

David Crippen:

I think interesting practical advice.

But can a case be made that the "new" outcome after then initial wishes were overturned is irrelevant. It doesn't matter that she has been weighed in the balance and been found salvageable. Her wishes, signed, sealed and delivered is that she didn't every want to get far enough to have to deal with that possibility. If she had, she might have worded her missive: "I don't want any kind of life support unless there is clear evidence that it your be short term and self limiting".

How is it possible to find a wrongful death if the patient clearly chose not to weigh the possibility in the balance? It is the choice of death by proxy.

Anthony L. Dewitt:

There is no cause of action for wrongful life, only for exceeding the scope of the consent. So if you kept her alive and a jury disagreed and said she should have been left to die, they can only reach this conclusion if a reasonable and prudent physician would not have acted as you did. Although experts can be found under rocks who will testify that Elvis is still alive, I find it hard to believe that a jury of twelve ordinary people would hold a physician to a standard that essentially is unknowable.

Most courts hold that living wills are expressions of the wishes of a person, but are not legally binding. They can be made binding by relatives who move to enforce them through guardianship proceedings, or, where they have a durable power of attorney for health care, through an action to transfer the patient out of the hospital. In that situation, you have the relative asking the court to enforce his or her right to make decisions for the incompetent patient, and if the incompetent has signed on to that document granting them that power, then the court will entertain it. But in this hypo, there is no such appointed person, and so, as a result, there is no one to "enforce" the wishes of the incompetent. So it would be up to Rel 1 and Rel 2 to fight it out in the court to get the right to speak for granny and when that right is granted, then that person can enforce the decisions. Until then, they're going to be paying a lawyer a lot of money. In addition, if I am the hospital, I want that patient to have a guardian ad litem to insure that Rel 1 and Rel 2 aren't just trying to get to the estate in the Poconos a few years early.

I don't think a court would enforce a living will in the situation where you're talking here, where you have an essentially viable patient. Of course, where she is without her viable mental state, and she is a dementia person, then a court might be sensitive to this need and do what it felt in the patient's best interest. That, of course, is a big unknown, but is also something that might run afoul of the Rehabilitation Act (Section 504). But, if I am the lawyer and Rel 1 comes to me and tells me she wants to sue, I want my money up front.

Now, as to wrongful death, that too is an interesting question. A death is wrongful when it occurs as a result of negligence or intention. Negligence in this case would be to adhere to the demands of the family if a reasonable and prudent physician would not do so. Here the wrongful death claim is not really solid because the patient is an old person, and the damages are all principally non-economic, and there are good defenses. But, it is also the situation where an advocate for nursing home issues and for the elderly could make a lot of political hay calling the facility a "final solution..." etc... Stated differently, while I don't think the cause of action would ever see its way clear to trial on the grounds of causation (death was arguably inevitable and the wish of the patient in this case)... if you got the wrong jury you'd get a bigger whack here than on a battery claim. Again, that's all my opinion, based on my experience litigating nursing home cases involving wrongful death.

I have one very similar. Dementia patient, family member came and fed every day for 3 years, and when she got called away to NY to visit family that was ill, the home left the woman without food and water for 5 days and she developed pneumonia refractory to antibiotic therapy and despite treatment (though not aggressive treatment), the patient succumbed. We have a WD claim against the nursing home and we will litigate that one to the death.

Dave Walsh:

Tony has pointed out an aspect of living wills that I find very frequently gets lost in the conversation: a living will is an expression made by a patient specifically to the patient's physician, no more and no less. Correct me I'm wrong, Tony, but the wishes of relatives/loved ones/significant others do not trump the content or expression of the living will document. It is left to the physician in attendance alone to interpret the intent of the living will and that physician has no strict obligation to seek the approval or disapproval of unrecognized surrogates in his/her planned course of treatment (there is no recognized surrogate here, right?). In the case FL presents, unless there is an effort to have the court appoint a surrogate, it is up to him alone to interpret the intent of the living will.

I bring this up because I just finished an ethics consult where the parties were all looking at the living will as the be all and end all and the documented and recognized surrogate felt obligated to follow it to the letter. I had to emphasize to the physician that the treatment plan he will eventually formulate must be based on his clinical knowledge in concert with the wishes of the surrogate and that the living will is information for his consideration only. And if for some reason the surrogate wished to do something that appeared contrary to the living will, the physician cannot use the content of the living will to refuse the request/denial of the surrogate. Unlike the Durable Power of Attorney for Health Care advance directive, the living will is not binding. I know it's subtle, but you would be surprised how many times in the emotional heat of end of life situations these distinctions become very important cornerstones of how things play out...

Anthony L. Dewitt:

I think there is a very big distinction between withholding and withdrawing. In a withholding situation, you are faced with the immediate prospect of death from inaction. Because it is immediate, the tendency, to quote Judge Robertson, is to "choose to err on the side of life." While a withdrawal decision can be made in due course, after a thorough exposition of the issues while the patient's immediate clinical problem is in check, thereby providing additional comfort to both clinician and family members, a decision to withhold is immediate, permanent, and irrevocable. The chief distinction in my mind is the irrevocability as it applies to the issue of deliberation.

Life and death decisions should not be made in haste if at all possible. When a physician chooses, in an emergency, to treat a 35 year old man with pulmonary edema for cardiac problems based on all the information he has in front of him, and it turns out later that the patient had been exposed to phosgene gas and that the pulmonary edema was not cardiogenic, he feels bad about it, but he can take comfort in the fact that he HAD to make a choice and he made the most reasonable one he could at the time (actual situation I was involved in). The situation is different however here. You don't HAVE to make a decision to withhold when you can make a decision to treat and review. I also think a civilian jury of non-clinical persons would pretty much reason it out the same way, which of course, colors my thinking, but makes it no more right or wrong than yours.

Todd Ludwig:

Clearly, the term "terminal" is vague and is open to interpretation. I think we need to agree, however, that an essential component of the term "terminal" is the irreversibility of the condition it describes. This is required for the simple reason that the actions dependent on this determination, letting the patient die, are Irreversible. The info given has been somewhat indefinite with regard to the potential reversibility of this woman's acute condition and the responses to the case have been pointed this out.

The term "terminal" is ambiguous. Take for example a woman with ovarian cancer. There are a series of 8 or so chemotherapy treatments that can slow or even stop the growth of her tumor. The first is shown to be 90% effective in 90% of patients. The second, 85% effective in 75% of patients. The third, 70% effective in 50% of the patients and so forth. Lets say this woman is currently being treated with the 3rd of a series of 8 drugs. She is admitted for a routine resection and post operatively develops arrhythmia. A consulting physician looks at the patient's chart, sees the series of many drugs she has received that have not totally effective.

He also sees the patient's living will which states, in the same vein as the one being discussed, "If I am in a terminal condition or state of permanent unconsciousness, I do not want..." x, y, & z. The consultant thinks the patient should be classified as "terminal," that her living will take effect, and she be made a DNR. (The woman is competent at this point, but says she is ok with whatever fate falls upon her - no, this case is not made up!) The woman's gyn-onc contests that she should not be DNR. The nursing staff calls an ethics consult to help determine what they should do if the patient arrests before the two docs can reach an agreement - an agreement on the definition of "terminal."

The gyn-onc doc argues that even though the cancer will most likely cause the woman's death, the continued use of the series of drugs will likely extend her life at a good quality by 6 months or a year. Therefore, he argues that a DNR order is completely inappropriate for this her b/c of the amount of living she has yet to do. He says she is not terminal and contends that if we classify her as terminal, we should classify everyone as terminal since everyone must die eventually.

So, the definition of "terminal" is not entirely medical. It depends somewhat on the patient's goals. In the case we are discussing, "terminal condition" is not well defined by the patient and neither are her goals. Despite these uncertainties, however, I still think the supposed dilemma here is somewhat of an illusion b/c we are forgetting one of the basic tenets of the American consensus with regard to life-sustaining treatment - that there is no ethical or legal distinction b/n withholding and withdrawing life-sustaining treatment. Whether it is known before treatment is started or discovered after treatment is started that the patient stated s/he did not want LST if s/he is dying, is ethically and legally irrelevant. (Emotionally - that's another story.)

That being the case, the first question that must be answered is "Is this patient terminal?" From what I've read, her prognosis is somewhat uncertain. However uncertain it is, the prognostic judgment should be balanced with the patient's wishes re: her care in such a situation, however limited that info may be. From my experience I would argue that most people who draft a living will don't want it invoked until they are close to death (i.e., don't define "terminal" broadly) not when they may still have a significant amount of time yet to live and share with their loved ones. But, here, the patient's dementia is ethically relevant if there is some evidence that the patient would not have wanted to live in such a condition. If the patient is clearly going to die, however, despite aggressive treatment,I think it is clear that honoring her wishes requires the swapping of aggressive LST for aggressive palliative treatment.

Leslie Whetstine:

I gather this information is offered to have us consider that this is in all likelihood not the quality of life she wanted, which is why she made the living will in the first place, to avoid just this scenario. The problem is, her Living Will doesn't seem to have protected her against this fate, and it's very hard for Living Wills to do exactly what they were intended since on their own they're just words on a piece of paper and life certainly doesn't work to the letter.

Living Wills work well as communication devices and facilitate dialogue so things like this can be worked out ahead of time if possible allowing the staff and family to get a feel for what the individual wants. Designating a surrogate, which she clearly didn't want for whatever reason, may have helped clear up any misconceptions and may have enabled her wishes to be fulfilled. But a piece of paper known as a Living Will on it's own really can't do that effectively.

She isn't terminal, I don' t think she ever met that definition even upon admittance to the ED as the second daughter speculated. Just because she would have died without treatment doesn't make her terminal, it makes her in need of an intervention, like millions of others who will land in the ED, none of whom may be 'terminal' but simply sick and in need of care to get back to baseline. It appears that's what she did and continues to do. That's not terminal. It's unfortunate because I have a sinking feeling this woman was trying to avoid withering away in a nursing home demented as she will do, but since she didn't explicitly say any of that,we can't infer it. We can only go on what she gave us. If she were DNR, then this would be different altogether but the criteria to follow a Living Will aren't met yet.

Anthony L. Dewitt:

Leslie Whetstine has really hit the nail on the head, and her post here has really helped me in my thinking about this case. Leslie correctly points out it is difficult for Living Wills to do exactly what they were intended, since life isn't a piece of paper.

Frequently in the hullabaloo that ensues in an end-of-life witch hunt, this critical fact is overlooked. Francis Nevins, a law professor and mystery writer, is fond of saying that to be a good lawyer you have to be a good science fiction writer because you have to envision alternative possible futures. Leslie is correct in pointing out that the words on a piece of paper cannot envision alternative possible futures. it is improper to interpose one's personal reading of a living will on the facts, because we can't know what the facts were when the Living Will was written.

Don Strubek:

With all due respects, I think this unfortunate woman did everything she could to foresee, plan & express her wishes for what she wants at the end of life. Someone earlier said that "terminal" is a dicey word in living wills. It's not the definition that's the problem, it's our 'reading in' to what's behind the meaning. Does it mean "if I am statistically more likely than 92% of the sample" or is it "if I have cancer", or "if I get hit with a bus" or "if my heart stops" or (as in this case) "if I have pneumonia and can't breath for myself"? Anything can be terminal - but I think this woman meant it to mean - 'coming to my end'. She went on to define the specific therapies she did not wish to endure, which included intubation, ventilation & antibiotics. And she added that she did not want to burden anybody else with these decisions. (All those items are in the original post.) She spoke for herself.

As our resident Ethicist Leslie Whetstine stated in her post:

"I gather this information is offered to have us consider that this is in all likelihood not the quality of life she wanted, which is why she made the living will in the first place, to avoid just this scenario. The problem is, her Living Will doesn't seem to have protected her against this fate"

I will go further to say that we & the health care / medico-legal system have failed her. 6 years ago this gal knew exactly what was coming her way, she thought about it, probably for a pretty long time. Maybe she even agonized about it. Coming to terms with exiting our parking spot on Earth. (I've spent some time with 80 year olds. They talk about dying a lot!.) She did what she had to do. If she could have written a NO CODE / DNR she would have done it. She told us how to act, and we let her down.

Maybe we should add "Do Not Call 911" and "Do Not Move Me From My Bed & Room in the Nursing Home" to these 'easily forgotten when they matter' pieces of paper we call legal document & living wills. Why is it so difficult to allow people to die with dignity? Why is it so difficult to support these tough personal decisions that are thoughtfully made? Shame on the nursing home for not having that document pinned to this poor woman's chest so that she wouldn't have to eat plastic in the ED. When there's no vents left for the 20 y/o trauma, who's going to be the first patient off mechanical support ASAP?

Avi Roy-Shapira:

I don't think that intubation and short term ventilation for an easily reversible process qualifies as "life support the serves only to prolong the process of dying". In this case, ventilation clearly serves the process of helping cure her from an acute and reversible condition. So neither conditions stated in the living will are met, and the living will does not apply. Had the living will stated: "I don't want to be artificially ventilated or fed or transfused under ANY circumstances" it would have been a different matter. But it does not. It specifies two strict conditions, and at least one of those needs to be met before the directives apply. I am a bit concerned that you read a DNR order into this particular living will. It is as easy as that. You can only judge by what is in front of you. Right now, the patient has no terminal condition. So you cannot pull the plug just because you think the ED doc was wrong. Two wrongs don't make a right.

David Crippen:

Various responses:

"There seems to be a lot of angst in trying to read meaning into the word "terminal" in the living will. All conditions are ultimately terminal - being born is a terminal condition (though it may take several decades to occur). To my (non lawyer's) way of thinking, a lot if this could be simplified and clarified if living wills were to clearly state "in the case of irreversibly terminal condition" or "if I develop a condition which, despite medical treatment, will inevitably cause my death".

"She isn't terminal, I don't think she ever met that definition even upon admittance to the ED as the second daughter speculated. Just because she would have died without treatment doesn't make her terminal, it makes her in need of an intervention, like millions of others who will land in the ED, none of whom may be 'terminal' but simply sick and in need of care to get back to baseline".

I sez:

I think we should dwell a little on what Terminal" means to a critical care physician. I would ask you to believe that this patient is clearly terminal in the "critical care" sense and I will try to explain why. Pneumonia, an elevated temp and white count are treatable disorders. So if an otherwise healthy patient came to an ED with these symptoms, one would simply treat it. The issue of terminality would never enter into it because the patient is well compensated. However, these things do not exist in the same form in every patient. Our patient is different. She has reached the end of her compensatory powers and so we are not dealing with pneumonia. a temp and WBC elevation. We are dealing with decompensated organ system failure and that is a radically different breed of cat.

To wit:

Respiratory failure: the patient is unable to "respire", that is to oxygenate because of some form of blockage between oxygen carrying structures and the adnexal alveolar capillary. Lots of reasons why, but in this case we'll say that her pneumonia has clogged a sufficient number of alveoli such that simply increasing the inspired oxygen will not improve arterial oxygenation because it cannot get from the bronchus to the capillary. So.......the patient is already pushing venous blood (SaO2 of 80) through her post-alvoeolar arteriole and there is no way to increase the amount of oxygen available. She is already on the max possible without mechanical ventilation (100% rebreather). Increasing the Fi)2 simply increases the concentration of oxygen in the bronchus.

Ventilatory failure: the patient is unable to "ventilate" because her functional residual volume for whatever reason has decreased to the point where the energy it takes to move her lungs is greater than her musculoskeletal ability (Laplace's law). Therefore, she does not have the energy option to breath deeply; only enough energy to breath rapidly and shallowly, which will not adequately oxygenate her collapsed and obstructed alveoli. A BiPAP mask will NOT fix this situation. It will NOT take over the work-to-breathe that mechanical ventilation is designed for.

There are only TWO ways to reverse this self fulfilling prophesy of doom.

1) Positive pressure ventilation and (presumably) PEEP....to splint open the errant alveoli and force them to participate in gas transfer,

and

2) Mechanical ventilation........to take the ultimately fatal work-to-breathe away from the failing patient and put it on a strong machine.

So for the above reasons, I ask you to believe that this patient is CLEARLY "Terminal" in that without aggressive and invasive treatment she will surely die. Period. I challenge anyone who thinks they can reverse these organ systems in a "supportive but conservative" fashion to show me how. This definition of "Terminal" is based on a finite point on a moving continuum of events. It is terminal only if not treated by positive pressure mechanical ventilation. But the patient has made her wishes known that she does not desire to take a chance that machines can reverse her organ failure. For whatever reason she does not trust them so she would rather die than succumb to them. It doesn't seem that she has clearly thought the issue through. And that is part of the problem with Living Wills. It is impossible for me to know if the patient understood ALL the implications of the living will when he or she signed it or if they still subscribe to a previous interpretation of this implications when they arrive in my ICU months or years later. They are interpreting "Terminal" as a unidimensional phenomenon and my understanding of it is multi-dimensional.

Therefore, when such a patient arrives and I read the "living will" I am in a quandary. They have the autonomy to tell me what they desire done with their body and I am pretty much limited to their wishes no matter how stupid they seem. Mr. Dewitt would presumably tell me that if I come upon a patient bleeding to death in a car accident and the patient tells me in no uncertain terms that I am NOT to put my finger on the bleeder and stop it, that I would be wise to heed the patient's wishes no matter what I think of them. So.....if the living will had accompanied this patient, I would have made her comfortable and let nature take it's course. So much for dealing with "terminality" as a blip on a line.

However, the continuum of events has moved on and the definition of "terminality" has moved on with it. And so I must consider new options. As responder #2 mentioned: "Just because she would have died without treatment doesn't make her terminal, it makes her in need of an intervention." Unidimensionality has irrevocably progressed to multidimensionality. Her previous estimation of appropriateness of survivability is now moot. She didn't want to take a chance on survival, but that isn't the way the cards fell. Now survivability is assured and removing her from life assuring machines isn't the same thing as not putting her on them initially because of her previous wishes. It a VERY different concept and so I get some latitude in interpreting the new issue of survivability. We chose to maintain the patient on mechanical ventilation because of new interpretations of survivability available to us after the first wish became moot.

Leslie Whetstine:

But if there is no moral distinction between withholding or withdrawing treatment, how do you make a distinction in this case? Perhaps I'm not clear on what you're saying, would you elaborate?

David Crippen:

I would like to sell you the proposition that in terminal care, as in life, withholding is easier than withdrawing.

If a patient arrives in moribund condition and there is a living will or some other durable proof of the patient's wishes, the expectation is that death will occur as a result of those wishes. It is the whole point. The patient presumably understands that and their considered desire is for death to occur because ANY outcome of a resuscitation is preemptively thought to be unpalatable. The outcome is known before the game starts and the patient does not desire to roll the dice because he or she doesn't want to play the game. I think it is easier for patients and their families to make decisions withholding care because they perceive an associated outcome that is easier to accept and makes it appear less that they are making a decision that is "killing" the patient. If the perceived outcome is inevitable death regardless of resuscitation, then what's the big problem allowing that inevitable death early instead of letting it linger.

However, once life supporting care is instituted, a much clearer and impossible to ignore picture of the outcome is immediately available for the perusal of all. The patient now has options they didn't have before for survival of a sort, even dependent of "life support". Once this occurs, choices must be made right under the nose of that clear vision. Then patients and their families are forced to look at the reality that their decisions are inextricably linked to an outcome that is no longer inevitably fatal. There are now variables that they control, and it is much easier for them to make the connection that their decision may hasten death rather than avoid prolongation of it. Instead of yielding to inevitable death, the potential now exists to manipulate death, and a large number of families find that very disturbing and that's why a large number of them demand what we consider futile life support for patients who clearly can't benefit from it.

Avi Roy-Shapira:

Is a patient who is in shock because he is actively bleeding from a ruptured spleen terminal? According to you, he is. He too will surely die without aggressive and quite invasive treatment. Moreover, this invasive and aggressive treatment will include intubation and ventilation, at least during the operation. Do you really believe that if a trauma victim has a similar living will, then we may not operate, or else operate without intubation or ventilation?. Of course not.

You may argue that in the case of ruptured spleen, ventilation is only for a few hours, so it is somehow different. So lets change the case a bit. Suppose your patient comes in with peritonitis from perforated diverticulitis. Now, she will probably need your ICU post op, and you will have to ventilate her for a few days after the operation, just as you do for her pneumonia. Will you argue that she is terminal, deny the operation, and put her on morphine drip? All you argued here was that she needed temporary ventilatory support. This, in itself, does not make her any more terminal than a ruptured spleen does. If anything, the treatment of her pneumonia is LESS aggressive and invasive than the treatment of a ruptured spleen or a perforated tick. What I read in this particular living will is that the patient does not want futile treatment. It says nothing more than that.

David Crippen:

But the circumstances are radically different. Trauma is an unexpected and unpredictable life experience. What would be the real chances of a person being dragged into an ED with a living will that says: "If I am in an unexpected auto accident and I arrive with a ruptured spleen I don't want to be resuscitated". So this doesn't apply because it is not meant to be covered by a living will.

However, there are other situations that living wills were designed to be effective. What is the purpose of a nursing home? People don't get put into nursing homes for the view and food. It is a halfway house to a grave. They are supposed to die fairly soon because they are no longer functional. Some would say they have a righteous obligation to die soon. Nursing homes are repositories for patients awaiting that inevitable fate. It makes NO sense to me at all to drag a patient who is on a inevitable death track into an emergency room and resuscitate them. A 88 y/o nursing home patient at the end of her life NEEDS a living will to avoid people interfering with this progression of events. It is a natural part of the bundle. Avi says: "What I read in this particular living will is that the patient does not want futile treatment. It says nothing more than that".

But she didn't say that. She said that if she was terminal she didn't want resuscitated. I have made a convincing case that she was terminal in a unidimensional sense so her orders cover it in a unidimensional sense. If she wanted to talk about futility.....that's a different breed of cat and she should have specified more multidimensional information for the benefit of those trying to interpret her wishes.

Avi Roy-Shapira:

Suppose this same old lady goes shopping, about 3 months after she signed the living will, and is hit by a car in the parking lot. And the paramedics find the living will document in her wallet, when they look for her ID. Is this an off worldly scenario? The perforated tick scenario is an even more likely scenario. Nursing home residents do have constipation and diverticulea. I don't think you can invoke "terminal" as a reason to pull the tube.

I think that what you are really saying is at this patient was terminal BEFORE the current acute event: 88 years old, demented, in a nursing home etc. may well qualify as terminal at least in some sense. Consequently, any intervention on her, including surgery for ruptured spleen, is futile, and fits her living will. While I can sympathize with this sentiment, I don't think it fits what most of us consider terminal. You don't think so either, or you would have stated it in a more direct manner. Moreover, I agree with you that the above interpretation may very well be in accord with this patient's true wishes, if she could state them. Unfortunately, as Leslie wrote, it is not in the document you have in front of you.

I want to make one additional point. Suppose there was no living will. You may still make surrogate decisions for the patient about pulling the tube, if you truly believe this is her wish. I have no problem with such a decision. But I think it is imperative that you know that you are making a surrogate decision, and guessing at the patient's wishes. The living will you have grants you no such authority, except what inferences we can make from the fact that she took the trouble to have one six years ago.

The reason I am not letting go, is that I believe that the main merit of an ethical debate is not in the final decision, but that the participants define the issues explicitly, accurately, and know the reason behind their decision. You and I may disagree on the proper course to take with this or another patient, yet if we both understand the issues precisely, we are both acting ethically.

David Crippen

We could suppose till the end of time and always find a scenario that doesn't fit our previous rectitude. That's why we call it a problem and that's why we are hashing it out as best we can here in this forum. No ever said this was a problem easy to solve, or even that it could be solved. What we say is that if we understand it better than we did before we discussed it, we have a better chance of doing the right thing in the future..

Here is the aftermath:

In fact, the following morning she woke up on the blower and pointed to the endotracheal tube and shook her head. Parameters demonstrated she was extubatable and the ventilator was duly removed. She did well on nasal cannula and antibiotics and was discharged two days later after signing a new (what we call) Palliative Order Sheet explicitly stating her desire was to accept intubation in the future if her physician thought it was in her best interest and would be for short term only and there was a reasonable chance for successful extubation.

Does this mean we should ignore "Living Wills" on the supposition that patients who say they desire death before hardware would always change their mind in the clinch? I don't think so. I think it only illustrates the multi-dimensionality of the problem and why it is important to have us around to grapple with it.

The previous reports of her dementia seemed greatly exaggerated.