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RE: ".... I'm now left to try to explain to her why, over Ms. Bobbie's objections, her doctor insisted that she needed this operation.

So my question:

Why is it that doctors are so hung up on extending life at all costs. Shouldn't there be some designated age that says if you pass this milestone, then all your treatment becomes optional? Why do we put our older citizens through all this? Bobbie was prepared to die, she didn't fear it at all. What she did fear was being in pain for no good reason, which is exactly how she ended her days. Whatever happened to "do no harm"?"

So, the doctor wrestled her to the ground, sedated her, did the procedure over her objections, faked her signature on the witnessed consent form and somehow convinced/bribed all the other people on the team (the nurses, the admissions folks, her family) that it was all voluntary on her part ????

I understand that you are angry and grieving, but allow me to give you some perspective from the standpoint of an oncologist, who spends a lot of time with incurable illness, advanced age, and sometimes iffy risk/benefit ratios.

First, what a patient may choose to tell his/her family, bridge club members, and the guy taking the order in the restaurant does not always reflect what really happened. Sometimes, when people say, "Gosh, I can't believe they want me to do this!" that is really someone's cue to rush in and say, "of course you should do it! It's very safe and my mother did great with it!" OR "but we love you so much---we really want you to do it! we value you and think you are worth it" or some other reassuring thing. In this way, it's like the beauty queen saying how ugly her nose is...other times, a person really is "fishing" for advice and reassurance that it is OK for a person to choose not to do something, and that they should speak up to tell their provider what they want.

Secondly, if a person doesn't want to do something, whether that it taking pills, getting chemo, taking a blood transfusion, or getting surgery, all they have to do is JUST SAY SO. Same for CPR and ventilation (breathing machines). It is the doc's job to make sure they know all their options, and to give advice based on the risk/benefit ratio, age, etc., but in the end, it is the patient's choice, and that's what makes it a horse race. For example, among identical breast cancers, a pregnant 27-year-old will make a different choice than a healthy lady of 65, a healthy 75-year-old, and a broken-down, chronically ill person of only 60, with a very poor quality of life. Undoubtely, abuses occurred more frequently years ago, with the "doctor as god" attitudes on both the part of docs and patients, but those days are gone now, between medical training, the internet, changes in attitues among patients/families, the sheer volume of providers involved in complex decisions, and lawsuit concerns. I have to say that I have NEVER seen any coercion in the last 15 years in any of the patients I have seen, except by family. If the person doesn't want something, it is their responsibility to JUST SAY SO. Family can help with this as well. I did this with my grandmother, who clearly didn't want treatment for myeloma at age 94 but didn't want to hurt the doctor's feelings (!!!).

Thirdly, what one might choose rationally, coldly as a theoretical issue may not be what one chooses to do when one is actually confronted with a decision. I am sure that Superman would have shuddered and said, "heck, no!" if someone had asked him if he would choose to live, quadded off from the neck down, bloated and on a vent, and needing help for every bodily function. Yet when this happened, he chose to live that way for all those years---at any time, he could have simply said, "this is not for me" and he could have chosen to have those machines removed. I am not judging his choice; it was his, but my point is that when the chips are down, people may choose things that don't have a lot of benefit, either measured by longevity or quality of life. I am always astonished at the variance in my geriatric patients when I tell them that the value of "cure," at least time-wise, is much less for them than other patients. Some clearly see this makes sense and at least needs to be weighed into the decision, and others are offended at the idea that a "cure" that may be only months or years may not be worth it the side effects.

As an oncologist, I work tremendously hard to make sure that people know what they are dealing with: curable or not, side effects and effectiveness of treatment, other treatments available, what the non-intervention options are (Hospice/comfort care), possible timelines with each, etc. I try very hard to make sure that patients understand that it is THEIR choice and that not only will I respect it, I will do my best to make sure that their family members support it and don't hassle and 2nd guess them. I make sure they don't make snap decisions, and that they have lots of chances to ask questions, and that they know they can change their minds again, if whatever they have chosen is not what they want after all. I try very hard to be compassionate without offering false hope, and I tackle the tough questions, which is very emotionally draining, and so to have all doctors painted as "insisting that patients hang on to life at all costs" is not only inaccurate but offensive (although I am not taking it personally and know you are a cool person, LWW, from your previous posts).

Actually, my problem has always been the opposite, unrealistic patients and families who believe that they will be the exception because they "are a fighter" or have God on their side. Sometimes it's just denial (who wants to think about this icky stuff?), and often it is simply fear of death (which I find often exists even in very calm, rational 80-year-olds).

On my call weekend rounds ending yesterday, I saw (cleaned up for anonymity):

1 patient with widespread incurable cancer who wouldn't talk about "what if" for code status, and so if she does worsen, she will be put through horrific stuff that doesn't work (but on TV, a person is shocked and then they sit right up, lipstick on, and have a tearful family hug). Is this going to be MDs "forcing her to cling to life at all costs?" No, it is going to be HER choice because she refused to face making a decision. Or else, if she DOES survive it for a few hours or days on the vent, it will be her kids/spouse who has the tough job of allowing us to unhook her from the vent.

4 more patients with significant problems and poor quality of life, who had refused to switch to comfort care despite the advice of their oncologists.

2 in the ICU dying slowly with tubes everywhere, because they did not agree with the MD's recommendation that they accept a "DNR" status.

8 patients with complications of cancer and/or treatment, who are incurable but have decided that it is worth it. A few a not bad at all but most have a poor quality of life, which is apparently is acceptable for them (remember Superman).

1 new diagnosis with a widespread incurable cancer in an elderly person, who said, "I'm old, keep me comfortable." Not a singe MD or nurse is arguing this rational decision.

1 person who signed out of the hospital against medical advice with multiple things that are potentially life-threatening. It is not a smart choice (this isn't even cancer and the patient is young) but it IS HIS choice, so off he went.

1 person who has been in the hospital for 60+ days ("a fighter") who only just now is coming to the conclusion that maybe the docs are right and this aggressive care which that person chose maybe ISN'T worth it.

1 of mine (the rest belong to others) who is in for a complication of my treatment. Incurable disease, and the treatment is not standard in that this person could not stand aggressive treatment, and the only goal was to live long enough for _____ family event in 3 months. The person knows it is incurable, but wanted to live long enough for this one event, and in fact is much better than before we started. Will it last? No. Is it worth it? Yes, to this person. Were there more aggressive, "clinging to life" options? Absolutely, and we explored them all, and this was the choice, which X can change at any time.

I think there are several issues that contribute to a person's trouble choosing to limit aggressive care. One is that America is not a country of "quitters," and this gets twisted by patients and families into "do everything at all costs or you show you are a quitter." I spend a lot of time trying to debunk this one. One is that an oncologist who spends 15 minutes selling chemo, then giving it, then moving on to the next case, er, patient, makes a lot more money than one who spends an hour going over options of just one patient and ends up sending to Hospice, and I do think that influences some docs, unfortunately. I think religion sometimes can be a hindrance for some people, who have the mindset that if they don't "do everything" that they are basically telling God that they don't have enough faith, and thus are setting themselves up for death because they just didn't prove that they believed. Actually, a recent medical study confirmed that "heroics" were much higher in people who considered themselves deeply religious. I think TV is to blame as well; those medical shows that show the good-looking heroic young MD desperately coding the equally good-looking young patient, as if somehow sheer determination could accomplish what a few joules of electricity alone could not, and then the lovely patient wakes up, weak but beautiful, and never brain dead with a tube down the throat, tongue and eyes bulging. I think that
time is an enemy as well; this is delicate stuff to discuss, and just like smoking counseling, I think docs just decide not to waste their breath if a person seems to have a mindset. Lastly, there are some places at which the truth does not exist. I have a person whom I treated for a bad cancer, 9 mos ago, elderly but fit, and a remission with few side effects was obtained for 7 months; a good trade. At relapse, we tried another thing, no response and lots of side effects. I and 2 other docs have said it is time to stop; the person is losing weight fast and getting very weak. Are they going to stop? Nope! They are going to go to "Cancer Miracles of the US," where they will cure anything (says so on TV), at least until the insurance runs out, or when they turn out to be someone who inexplicably can't be cured after all.

There are 2 ethical issues here: The first is that the doc must present all options in a balanced way, and respect a patient's choices (even if the patient wants to have a drawn-out ICU death). The second is that a patient has to make his/her wishes known.

And now I am going to get some sleep from the call weekend.
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