Stopping Life Supporting Treatment without Patient/Surrogate Consent
Under what conditions, if any, should a physician deny further attempt to keep a patient alive but continuing comfort care in defiance of the known request of the patient or the family to continue life supportive treatments?
Modern medical science has provided physicians the ability and tools to continue life despite inability to cure the patient of the illness yet maintaining the patient’s life even if the life is one of being permanently unaware or, to an average patient, a life of no further personal value.
It is not unusual these days that physicians are challenged by the patient or the patient’s families to continue the life supportive treatments until death regardless of the negative consequences to the patient and others.
Should physicians be permitted to reject such requests? Currently, physicians can reject requests for treatment which has not been found to have any scientific basis for its use and which its use is not in keeping with professional standards. Such a treatment is characterized as “physiologically futile”. But what if the treatment has a scientific basis for use and if used can keep the patient alive but the treatment doesn’t cure? This form of treatment cannot be considered futile (of no value) if on continuing such a treatment the patient accepts the consequences of maintaining their life with this treatment but without cure. Nevertheless, does the patient's or family's desires trump any advice of the physician to terminate life support? Any answers? ..Maurice.
It is not unusual these days that physicians are challenged by the patient or the patient’s families to continue the life supportive treatments until death regardless of the negative consequences to the patient and others.
Should physicians be permitted to reject such requests? Currently, physicians can reject requests for treatment which has not been found to have any scientific basis for its use and which its use is not in keeping with professional standards. Such a treatment is characterized as “physiologically futile”. But what if the treatment has a scientific basis for use and if used can keep the patient alive but the treatment doesn’t cure? This form of treatment cannot be considered futile (of no value) if on continuing such a treatment the patient accepts the consequences of maintaining their life with this treatment but without cure. Nevertheless, does the patient's or family's desires trump any advice of the physician to terminate life support? Any answers? ..Maurice.
posted by Maurice Bernstein, M.D. @ 1:08:00 PM
24 comments
24 Comments:
Yes, the patient's desire to stay alive trumps the physician's desire to let him/her die.
That seems blunt, but is the crux of the matter I believe.
Physicians are not gods. They shouldn't have the right to decide what is a life worth living, and who should live or die.
That thought is terrifying.
That said, I'm certainly not one who'd want to be kept alive with no quality of life. But what is a live worth living should be up to the person or their family.
TAM
At the bedside of a terminal patient in the ICU, decisions about life support are often complex and raise many difficult questions. Is the surrogate decision maker really speaking in the best interests of the patient (the Living Will may not be clear in some situations)?
In my 32 years of Critical Care practice, I found the most difficult situations were with dysfunctional families where substance abuse, mental illness, unresolved issues, or hidden agendas were present.
I still serve on a hospital ethics committee which reviews such cases. We view our deliberations as advisory and not binding, so the final decisions remain at the bedside. Unilateral "pulling the plug" isn't wise because it will drive the issue into legal action, which is slow and cumbersome.
Please see my blog for an example real life case from my practice:
http://www.endoflifeblog.com/2010/02/talking-to-god.html
Jim deMaine, MD
http://www.endoflifeblog.com
I think those are excellent points Jim. I can imagine some truly awful situations, if the surrogate is "iffy".
But as to your question "Is the surrogate decision maker really speaking in the best interests of the patient?" - well, who gets to decide what those best interests are? The patient apparently chose that the surrogate should decide - either by putting that in writing, or by default (wife, parent).
I'd find it more difficult personally if it was not in writing. To me - if the patient put it in writing, that is what they wanted - whether or not the physician thinks it's a good idea or not.
Unless, of course, a court decides that the surrogate is not competant.
There is often a presumption that the physician is smarter and wiser, not just medically but overall - and thus should make decisions, rather than the "lesser" people. You personally don't seem to have that attitude, but some do.
TAM
TAM, very good points. I trained in the era of physician paternalism where "doctor knows best." Some good mentors including ICU nurses taught me the art of shared decision making with the focus being on the wishes and best interest of the patient. Ethics Committees at times can be helpful in that multiple perspectives are in play and the potential conflicts clarified.
In family conferences when a loved one was unconscious on a ventilator in the ICU, the social worker and I would walk the family (plus family on a phone conference line) through a time line of the illness, the outlook, and what further treatments could be offered - including the benefits and risks of the treatments. Then at some point, we'd ask the family "If Mom could be here in the room talking to us what would she say?".
At times the family might ask, "What would you do if this were your mother?" I'd try to give an honest answer, even "I'm not sure!"
I think transparency and honesty has an effect of bringing the surrogates into shared decision making - and avoids the power play.
The main ethical principle is respecting the autonomy of the patient's wishes. At times this conflicts with the caregivers ethical mandate to "do no harm". CPR in a terminal cancer patient is sarcastically referred to as "medical last rites" by ICU nurses, and is a cause of moral suffering. It's gruesome to fruitlessly crack multiple ribs and shock a heart "because the patient's surrogate demanded it".
This is why I give classes to healthy patients about advance planning for the inevitable. Group Health in Washington State now offers such classes to all consumers and enters all their advance directives into their medical records - available 24/7.
Dr. deMaine, we need more docs like you viz. giving classes to healthy patients. And excellent points from everyone all around.
When my father lingered in the ICU last year after an episode of what was probably VFib arrest but "saved" by the EMTs, the situation that Dr. B offers was reversed, as we tried to convince the physicians to honor my dad's living will and take him off the vent. It took a week of tense negotiations until they relented. So when a patient's family asks me, "What would you do if this was your father?" it has a certain resonance these days.
That said, I agree with Anonymous: it's just not for me to impose my will on a family. If the situation looks hopeless (e.g. metastatic ca, elderly pt., clear suffering is going on) then I might try to say some persuasive things re: DNR or CMO. But I think it's bad form for a doc to anything other than help the family & pt make a decision that they're comfortable with.
Part of this discussion is hamstrung by the vagueness. Do you have a specific example that would allow us to dig into the ethical issues, Dr. B?
Excellent, Dr. Jim (and Billy). Your blog is very interesting too Dr.
Caring for people in these situations must be incredibly difficult - I admire those who can manage.
TAM
Billy, try these two which are the classic example based on the ethical principle of justice: the need to preserve a scarce resource for those who have a far better prognosis to survive and meet their quality of life goals.
1) a patient with multi-system disease and has been under life supportive treatment for months requiring amongst other supportive treatment blood transfusions every few days for uncontrolled bleeding.
The patient's mental state is such that he or she is not aware that they continue to be treated all these months only to be kept alive and not to be cured. There are so many other clinically ill patients in the area, day in and day out, that are awaiting the patient's blood type for treatment and cure. Their management is being delayed because of the need to await blood of that specific blood type.
2)A catastrophic influenza pandemic has occurred with virtually all mechanical ventilators in use in hospitals through the nation and no additional ventilators are readily available to add to those being used. A patient with severe influenzal pneumonia, on the ventilator, has been managed for a 2 weeks already and there is no sign of improvement, in fact, the parameters of the ventilation has had to be modified to keep up with the patient's deterioration. Coming to the critical care unit from triage is a patient with an easily reversible non-influenzal cardiac pulmonary edema, needing only a few days of mechanical ventilation for reversal.
Billy, with these two examples, can you dig into the ethics from your point of view? ..Maurice.
And in both of these examples, the surrogate is demanding that the patient be kept alive?
Both of these are unusual though, aren't they? In that they seem to be directly calling for triage - as opposed to the more common, just costing money - not directly immediately keeping someone else from getting care.
How far of a step is it from taking the blood or the ventilater away from the one who is currently requiring it, to deciding someone was far gone enough that they should be an organ donor now?
TAM
Dr. B—
As you know, I am a big fan of this blog & I love your work, but what I meant by my first comment was that sometimes hypothetical examples just don’t cut it. I think that the two examples you give are adequate “what-ifs,” but my quibble is that you can only speak in generalities, and one can add on further “what-if” qualifications to suit whatever argument one wants to make so that the conversation gets a bit amorphous. This is okay, I guess, if you want to know Talmud, but there’s a reason why I gave that up for Lent, as it were.
That said, let me reply by giving a true, real-life situation that happened to me a few years ago and I’ve been chewing on ever since. I am an ID consultant, and I got called to the ICU to “approve” Voriconazole for a patient. (For lay readers: this is a medication to treat fungal infections, and in our hospital it can’t be given without an ID doc saying it’s okay to use, mostly because it’s a very expensive drug.) Here’s the patient, with details altered enough to preserve anonymity but preserved enough to maintain the salient points: 83 yo female, diagnosed with Stage IV lung ca with mets to brain in past 6 months. Progressively worsening in rehab and NeuroSurg offered whole brain irradiation which helped for a week, then pt became gradually more somnolent and required intubation, then trach & peg, then lying around in rehab for a long time while developing Stage IV sacral decub, which necessitated sending pt back to my hospital for plastics consult and surgical debridement. They evaluated pt and did bedside debridement but too large an area to put skin flap. Unsurprisingly, pt had rocky course with recurrent fevers. Pt got bronched by ICU attending and cultures sent which grew…you guessed it, Aspergillus! Which is why they called me to approve vori. Mind you, for the last 10 weeks this patient has not been alert, much less oriented.
So: vori in a pt infected with aspergillus is, in theory, a life-saving drug. This is also clearly a totally hopeless case where the family has absolutely no understanding of the uselessness of these various therapies, either because of their own fantasy-based notions or of the timidity of the physicians to put things in stark terms, or both. I have the “power” to withhold vori because of my position, but that power is theoretically granted to me based on my ability to discern when it is medically appropriate to give the drug. In narrow terms, this is a completely appropriate use of the drug, while in a broad, fuzzy sense it is anything but. So what would you do? And what ethical priniciples do you cite in either refusing or allowing the vori to be given?
To both TAM and Billy, the practice in my hospital is not to withhold treatment based simply on money. We would consider withholding treatment based on scarce resources as suggested in my examples but of course also considering all the facts of the case. At this time, our ethics committee doesn't consider monetary costs as a scarce resource. Some may argue otherwise. Thus, Billy, in your case, I would not be against the use of that anti-fungal drug itself as an expensive treatment but would be guided by its response in eliminating the patient's fungus (its pathophysiologic response) regarding its continued use. ..Maurice.
If the patient infected with aspergillus is given Vori, would there be an ultimatum given regarding the amount of time the patient is given to showin signs of being alert and orientated?
I don’t know anything about aspergillus, but age in relation to how well the patient will respond to the Vori is more than likely a huge factor in whether you (the ID Doctor) will ok such an expensive drug for treatment. Yet it seems only fair to give the patient a chance- providing an education guess on roughly how long it would take for alertness would allow, to me, the most obvious median: Allow vori to be administered and withhold if no alertness is evident, saving both the hospital and surviving family unnecessary cost.
Doc B—money really isn’t the issue in my “vori case,” since this hospitalization by itself must have cost something on the order of $100-150K, so a few extra hundred bucks isn’t going to make such a big deal. I merely meant to note that expense is the underlying reason why the hospital has an ID approval policy for vori, but we never let the cost of the medication factor into its approval, only whether or not it is being requested for its proper indication, which in this case it clearly is.
Kristina, the patient has shown no signs of being alert and oriented for over 2 months and has metastatic cancer that is resistant to therapy. You can see his sacrum (his butt-bone) directly because he has a massive ulcer on his back so there's no skin about the area of a CD jewel-case. He can’t eat (receives nutrition through a tube), he is on a vent and looks like he has a pneumonia that we can only hold at bay. Based on my clinical judgment, he’s never waking up, and he’s probably got a few weeks to live at most. Why do we even need to think about setting a time regarding a decision on how long to give him vori? All the information is in front of us: he’s going to die, we are only prolonging an obviously horrible death. My question to you is: do I have the right to say “no” based on this fact?
If a physician is attempting to make an ethical decision about the case to present to the family, the argument should be based on the patient's desires for quality of life as documented by the patient in the past either in an Advance Directive or spoken to family members or legal surrogate and as reported by them to the physician.
If the quality of life requested by the patient or something very close cannot be attained by use of all the life-supporting and restorative tools available to medicine, then it is time to advise the family that further life-support is futile for the patient. The procedures and drugs may not be physiologically futile in maintaining life but what is futile is the attempt to attain the patient's request regarding quality of life.
Of course, there are cases where no body knows what quality of life the patient would have wanted. However, it is safe to assume that most patients would want a life in which they are aware and can recognize and interact with family and others and able to generate an interest in continuing a future existence. If even this minimal degree of quality cannot be attained by treatment, even without knowledge of a patient's desires, one can state that further life support would be futile.
I should point out that current ethical consensus is that physicians do not need to provide life-support to a patient simply to preserve an inert body for the comfort of the family. One exception is the standard of hospital practice in the case of a patient who is pronounced dead by neurologic criteria. In that case, the hospital may continue ventilation and blood pressure support long enough to keep the patient "pink and warm" for family members coming from a distance time to arrive and say their last "good-byes" to the deceased patient. Usually this shouldn't exceed more than a few hours or a day.
I hope this commentary helps to explain current consensus.
..Maurice.
Everything you said, Dr. B, makes sense. But what if it isn't completely an inert body?
My friend's father had a stroke. Various things went wrong, he was unresponsive and on a vent, and was not expected to recover. There was a conflict between the family and the physicians. The family wanted to give it more time, and the physicians and ethics committee wanted to take him off life support. The family would not consent.
Meanwhile... against the odds, he did recover. Alert and oriented.
I think a case where someone is brain dead is ethically easy. But in the above case, if the physicians were allowed to decide rather than the family, someone I know would not have lived. I guess that influences my opinions.
In that case, I don't think the physicians were irresponsible, nor the ethics committee wrong. It was reasonable what they thought. Like all humans, they were wrong from time to time - and this was one of the times.
TAM
TAM, ..and occasionally the family's own prognosis is wrong too. The patient is maintained and continued on life-support and no miracle that was hoped for happens and the patient dies. Has the patient suffered unnecessarily? Maybe. Has the family suffered from the tension of the prolonged wait with the end results which were not wanted? Maybe. Could suffering, tension and loss of scarce resources which could have been used for others been eliminated? Maybe. We can only base further life-support decisions on the best of diagnostic prognosis which at times is wrong and the consideration of the goals and quality of life which the patient has or had expressed. And..we are all wrong at times as you said.. including the patient who may have set an unreasonable high standard for the wanted quality of life and yet if allowed to recover even with disabilities may later recognize that being alive and resulting life was nevertheless an acceptable quality. And that happens too. ..Maurice.
The best interest of the patient should always be kept in mind. Based off of the things you have listed regarding the patient, I feel at this point it is not a right but now an obligation to say no. Prolonging his death because it is the wishes of a selfish surrogate hopping the doctors are wrong or because you said yes to vori is, at this point, cruel and inhumane.
The patient may not show signs of being alert, but how can he not be feeling pain? And for over 2 months?! This man is 83 and the least he deserves is the most peaceful passing that can be given.
Getting to the heart of how a patient views quality of life can be very challenging for the patient, surrogates, and doctors. Not all situations can be foreseen or even imagined by the healthy patient. And the situation may change the view or acceptance of a certain level of function. Most Advance Directives really only touch the surface of "what if's", particularly on what level of neurologic function would be acceptable. Thus, at times, it would be a real struggle for the surrogate decision maker and medical team to really know how much more to push on.
I had a crusty old patient with severe COPD on a vent with a trach for almost three months with multiple complications. But we pushed on even though it appeared he was suffering through the agonizing weaning process. When I saw him in my office after being at home for three months, I asked him if he would ever want to go through an experience like that again he got angry. "Doc, what do you mean. Of course I would, I can't wait to see my granddaughter graduate from college".
It turns out he didn't remember any of the ICU "suffering" we perceived. He subsequently called me several times to make sure he was "full code" status.
In terms of distributive justice, I did have one patient with a rare genetic illness when a very expensive (100,000K/yr) drug became available. This drug wouldn't cure him but might decrease bone fractures. The patient himself refused the drug based on expense - even though the insurance company would pay. Interesting guy.
Lastly, I have a little different take on giving direct advice to families. In conference with them I would do a lot of story telling about patients with similar problems and what choices were made. But given that many patients are in this situation for the first time, I'd go through a full "informed consent" discussion about options. Then at some appropriate point I didn't shy away from giving them my opinion. A colleague of mine called this "being a Doctor" in the sense of giving advice. So I would often give them my personal recommendation, much like a surgeon or stock broker would. But it needs to be done in a kind and caring manner where it is quite OK to disagree. Let me know what you think. Isn't this the duty of a doctor?
Dr. B - oh of course the family can be wrong. In the example I gave, the family members were both nurses, so they did really understand the situation. But I suspect that family members are wrong far more often than doctors.
But to me, if there is a question, you have to err on the side of life. You can always remove the vent later, and let them go. But once they're gone, that's final. So unless it's a crazy situation, I still think the family has to choose.
Also, barring the patient suffering extremely, if a family is allowed to believe they've given their family member every chance, and they eventually die, it's easier to be at peace with that. If they chose to "pull the plug" sooner than they want, or a physician does it over their objections, they're likely to feel like their family member was murdered. I know the doctor doesn't feel that way, but I suspect the family would.
I would hope if the patient was alert, they could make their own choice. If they're unconcsious, then they aren't aware of it and suffering.
Balancing cost and resources against the desires of the family is another issue, that I don't really feel qualified to address.
But since doctors can be mistaken too - I feel the family should make the decisions. After all, if the patient wanted the doctor to decide, he could have designated a doctor as a health care proxy.
Dr. Jim - I would be most grateful for the doctor's opinion and recommendation. Especially as you present it.
TAM
Stop the bleecig, stop pain treat for shock, DO NO HARM. Only in this materialistic, superficial world today is someona audacious enough to not only de-cide a person's value and ''quality of life''-who determines the ''quality'' of the murderer ? I WONDER IF GOD CONSIDERED QUALITY OF LIFE WHEN BABIES ARE BORN WITH ANOMALIES, EVEN VEG.,PARALYTIC, CARDIAC CONDITIONS ETC.-Helen Keller? I would not put a Dr. in that position. I would hope he would end pain, if I ''died'' it would be God's will. That is the only part a Dr. should play in ''plug pulling'' Look up ''Barbzra Rourke''on your computer and many others. Doctors and hospitals did not save her life it was people from all walks, the news papers, and it was legal help from HOSPICE, her daughter and son-in-law she was being euthanized against her will, against family will, by starvation and withhoding fluids, in a ''catholic hospital..non-catholic doctors.
murdered.
Simple question, can they pull the plug on a patient without the family saying yes.
Many hospitals now have Futility Policies and all hospitals have Ethics Committees. For example, a 50 year old man was found unscious by a bus driver. The Medics got the heart restarted but the brain had had no oxygen supply for more than 10 minutes. In the hospital he was declared brain dead by established criteria (no blood flow to the upper brain, flat EEG, and 2 neurologists consulting). The family wanted him to be kept "alive" on the ventilator, the doctors felt it was fulile to continue. The Ethics Committee sided with the medical team. The family was given 2 weeks to find another institution to provide the care they wanted. None could be found. The patient, already declared dead, was then removed from the ventilator.
Jim, welcome back after almost 2 years.
At my local community hospital, if the patient is found to meet "death by neurologic criteria", we would not wait 2 weeks to terminate ventilation but only keep the patient "pink and warm" for a few hours for family who was not in the area to arrive to see the patient.
Justin, if, in a different scenario, the patient was alive but the medical staff found that initiation or continuation of therapy requested by the patient and/or family was therapeutically futile and the patient or family disagreed, then after medical staff supported by the ethics committee, a treatment might be started or continued but the patient/family, with the assistance of the hospital, be given 10 days to find a physician to agree to continue treatment or the treatment would be discontinued unless the case was then taken to court for decision.
..Maurice.
My 2 and half month old daughter was put onto a breathing machine and then without our (her father and I) knowledge or consent the doctors took her off. She was breathing with the machine's help, but she was still breathing. Can doctor's legally take an infant off of life support without the parent's consent?
Unknown from today: If the physicians find that the patient is breathing adequately when taken off the respirator as a test while monitoring her oxygen level and other factors, then removal of the patient from the respirator does not require consent from the family. Removal of the respirator in a terminally ill patient (such as terminal cancer) where removal would be lethal, then, of course, there should be informed consent by the patient or surrogates. ..Maurice.
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