Is there really such a thing as patient autonomy?

Is there really such a thing as patient autonomy?  You know, that's that thing where you, as the patient, get to make medical decisions for yourself.  Chances are, that while you may think you're choosing your own course through life, this may not be true as far as your health is concerned.

To further this discussion, let's allow for a few definitinos:

1.  Autonomy:  independence or freedom, as of the will or one's actions: the autonomy of the individual.(From Dictionary.com)

2.  PatientAutonomy:  The patient is allowed the freedom to make the best medical decision based on the best available information about all possible options.  The desire of caregivers to treat the patient as an individual person

Yet the truth is, there really is no such thing as patient autonomy.  The reality is the following:

3.  Real Patient Autonomy:  The patient is lead down a certain path, given one or two options, and lead to believe he made the best decision on his own.  Most people are naive about medical options and trust their physician to make the right choice for them.

I see examples of real patient autonomy on a daily basis at my work.  I walked into a room and the patient said to me:  "I don't think those breathing treatments do me any good, and I don't want them anymore."  I said, "That's fine.  They're meant to treat symptoms you no longer have, so you can refuse if you want."

As I was leaving the room the doctor walked in, and the patient said, "You can discontinue the breathing treatments if you want, because I don't need them."  The doctor said, "You need those treatments so everything else works better."  The patient said, "Oh, Okay."

So here you have to doctor ignoring the wishes of the patient and convincing him based on a statement that was completely not true.  Yet the medically naive (and other wise highly intelligent) patient had no way of knowing this, and so he bought into the physicians logic.

Perhaps better examples come at end of life care.  Here you have people who maybe even have advanced directives, yet because of the ethics of end of life care, the wishes of the patient are often overruled by the physician.

I have seen several younger patients who had DNR orders who were ultimately intubated and put on a ventilator because "The person was only 42 and too young to be a DRN."

I have seen a DNR patient put on a BiPAP machine, and even though the patient did not like nor want to be on the BiPAP, the doctor ordered:  "Do not take the mask off the patient no matter what."
Then you have the DNR patient who does not want to die but also wants to die comfortably.  This is where it gets really touchy.  This is where end of life ethics really comes under fire.  The patient doesn't want life saving efforts, but is gasping for air, cyanotic, and his lungs are full of secretions to the nipple line.

Does the doctor follow the wishes of the patient and do nothing, or does he treat the symptoms with BiPAP?  So now the doctor orders for the BiPAP, and it works so good the patient is awake and alert and insisting the mask comes off.  So you take the patient off the BiPAP and he can't breathe off of it.  So now what do you do?  ( I wrote about this here.) You have no choice but to put the patient back on.  Once again, the patient thinks it was his decision.

The patient's autonomy takes a back seat here.  Now consider the comfort of the patient.  Say the patient wants to be a DNR under comfort care only?  In other words, the patient has already accepted the futility of his disease.  Does being on the BiPAP make the end of life more comfortable, or does being on the BiPAP delay the inevitable?  Is the order for BiPAP complying with the wishes of the patient, or trumping the wishes of the patient?

In this sense, the patient isn't really making any decision, he is simply being lead in one direction and made to think he decided what was best for him.  Yet once the patient makes the decision to accept BiPAP (something most patients don't understand until they try it) it's difficult for a doctor to order for it to be discontinued so the patient can either sail without it or die.

Yeah.  You can debate such end of life medical ethics until you're blue in the face and there is no right or wrong answer.  That's why I think it's important for patients to be well educated about their medical conditions and end of life options.

Or, as one of my coworkers defined recently:

4.  Do not resuscitate:  I want to live, but I understand the futility of my medical condition, and I don't want you to make rescue efforts to save me if I stop breathing or if my heart stops.

5.  Do not intubate:  Load me up with medicine, do chest compressions on me, but, by God, do not you dare put a tube in my throat so I can breathe.

Related readings and references:

• Whitnack, Jeff, "NPPV Does Not Have a Positive Role to Play in the Care of DRN/DNI," RT for Decision Makers in Respiratory Care, August, 2006
• Silverman, William A, "The Myth of informed consent in daily practice and in clinical trials," Journal of Medical Ethics, 1989, 15, pages 6-11
• Also see my end of life lexicon

Are we prolonging life, or delaying death???

What I am going to write about tonight is something we need to have a major discussion about. Because I am convinced there is no solution to this conundrum. It's a conundrum because this terminally ill 93-year-old do not resuscitate (DNR) patient was placed on a ventilator last night.

In talking to her daughter, she led a wonderful life. She never held a job in her life, but her husband had a good job, so she didn't have to work. Instead, she stayed home and took care of the kids.

She has four kids, and all of them became successful in their own right. She was so proud that all her children turned out so well. And she's even more proud of her 12 grandchildren and three great-grandchildren. The flowers all over her room are a testament to how much she was loved.

When she was diagnosed with pulmonary fibrosis (PF) at the age of 88 she decided to make herself a DNR. Yet, even before the PF diagnosis she had become a regular fixture in the hospital with fluid overload, whereas her doctor said to me once, "Even a slight weight gain of 1-2 pounds quite often put her into pulmonary edema."

She was also a lifelong smoker. As a matter of fact, she smoked about a pack of cigarettes a day since the mid 1940s, when she started because it was in fashion to do so. As one of the negative and unexpected consequences of smoking, she has slowly developed emphysema, which has now progressed so that she has become a CO2 retainer.

Considering her grim prognosis, her doctor and family had decided to make her a comfort measures only patient, which justified placing her on a non-rebreather to keep her oxygen levels up despite the fact she was a retainer. But, despite the high levels of oxygen needed, she did not stop breathing (despite what believers in the hypoxic drive theory might contend. but that's a discussion for another day.)

The family had already been informed that their mother probably wouldn't live much longer without getting her lungs cleaned out, and that the best way of doing that was via a bronch. Yet, if the bronch were to be done, their mother more than likely would have to be intubated. But with her extensive medical history, she probably would need to stay on the vent at least over the weekend.

After a brief family conference, the family made the difficult decision to go ahead and allow the surgeon to do the bronch and risk the vent.

While the anaesthesiologist used a minimal amount of sedatives during the procedure, the patients sats consistently stayed low even on 100% FiO2, and the patient was not breathing over the vent when provided the opportunity. So the choice was made to send the patient upstairs to critical care, and to call RT to set up a vent.

As you know, when someone has to go to surgery they wave their right to a ventilator, at least temporarily. Even while a bronch is a simple procedure, it involved placing a tube in her throat, and the doctor peeking around her lungs with a bronchoscope.

As I was setting up the vent, the surgeon told me the right lung was completely filled with pneumonia, and he suctioned copious amounts of thick brown pneumonia not just from the right lung but from the left lung too.

The poor lady. My initial impression was that I'd keep her on the vent a few hours and wait for her to wake up and hopefully extubate her by morning, as I would any other post-op patient. But then I learned the story I just reported to you.

The problem with this case, as the Internist reminded me when he arrived on the scene to manage the ventilator, is that this patient is not weanable. He said, "How do we wean someone off the vent to respect a DNR order when she was on 100% to begin with. I know she's a DNR, but how do we ethically get her off the vent?

This lady was a true medical and ethical conundrum.

Did the family make the right decision? If they did nothing, there mother probably would have died soon. If they did the bronch, it might be possible to resolve the pneumonia, but still, the chance of her ever leading a normal productive life is gone. She is frail and has a terminal illness.

While the family assured me that they perfectly understand modern medicine cannot stop the inevitable, it might buy her some time, "so she can make it to her grandson's wedding in June."

Still, as one of the doctors said to me afterwords, "Are we prolonging life, or delaying death?" That is the question up for debate. What do you think? What would you do?

No Vent, DNR, or full code: what's your choice?

The decision of whether or not you want to be placed on a ventilator, or whether or not you want to make a decision for your loved one, is one of the most difficult decisions one can make. In fact, this is the basis of some very deep ethical discussions, and one of which may never be answered by society, only by the person who has to actually make that decision.

First let us note here that a majority of patients who go on a ventilator do so only for temporary purposes. If you have surgery, if you have severe asthma, pneumonia, or failing heart, you may need to be placed on a ventilator short term, just to get over the hump, per se. If a person is involved in a trauma, or if CPR is performed, then a person may be intubated and placed on a ventilator.

Those are easy decisions, especially when we are in emergent situations and are trying to save a life. However, there are also times when the decision to intubate or not to intubate can be complicated as complicated can get, and very stressful, and often disappointing if not discouraging.

In some cases you can plan ahead and write in your advanced directives that you do not want to be placed on a vent.  However, sometimes I have seen this declaration over-ruled at the point of impact when a person is in the emergency room and the person has to decide, "Do I want to risk dying now, or do I want to let these good people here in the emergency room help me breathe by placing a tube into my airway and assisting me with my breathing? Do I want to do that?"  More than likely, it will be, "Do I want mom or dad or grandma to die?"

Here I will provide some examples for you. All of these come from real life examples as I have actually seen them in my eleven years as a registered respiratory therapist.

One of the most frustrating examples to me was when a person decided they did not want to be placed on life support because, "I don't want to spend the rest of my life on one of those things," or "because I don't want to become a vegetable." In thinking this way, many people choose the following in their advanced directives: Full Code, Do Not Vent, or Do Not Intubate.

I have to cringe when I see that. I cannot believe any lawyer or doctor -- or advisor -- would recommend that option, because when a person's heart stops, and we have to do CPR on the patient, we also have to pump in quite a bit of medicine, and 99.9% of the time the patient does not survive a code breathing on his own: he has to be intubated and placed on a ventilator. Thus, if we do CPR, we have to put you on a vent -- there is no other option.

What might confuse people is what you see in the movies. There was one episode of "Walker, Texas Ranger," where Chuck Norris's character was having chest compressions performed on him, and his friend who broke his arm was watching on. Then Chuck woke up, the ambulance arrived, and the person who was taken away on the ambulance was not Chuck, but Chuck's friend with the broken arm.

It does not work this way in real life. The majority of the time when CPR is done on a person, that person buys himself a ventilator. That is, unless you are a DNR. In short, DNR means Do Not Resuscitate. That means if your heart stops we will not try to restart it. And, if you stop breathing, we will not place you on a ventilator. We will let nature take its course.

However, if the people working on you don't know you are a DNR, you will end up on a vent regardless. Not only is that the ethical thing to do, it's the law. If you're going to err, you err on the side of life.

However, I do think the decision not to become a vegetable on a vent is a valid issue for most people. Yet, one also has to consider the definition of a vegetable. Are you a vegetable when you have no body, but your brain is fully functional (as would be the case Lou Gehrig's Disease).  Or are you considered a vegetable when your brain if officially declared dead but your body continues to life?

Some people value life so much that they would want to live so long as they have control of their brain. That was my grandmas wishes when she was diagnosed with multi system atrophy, a disease similar to Lou Gehrig's Disease.  As a pro-life advocate, I totally supported her decision.

However, there was also the issue of depression and humiliation as you are fully aware that you have a tube up every orifice, and some strange person wiping you every time you have a bowel movement. Not only that, but you have to have someone assist you every time you move anywhere. Basically, you are a mind without a body. Do you want to live like that? Do you value life that much? Some people do. And we medical workers respect that.

Then you have the people who have Alzheimer's. These people will have fully functioning bodies but no mind. No mind no matter, no matter no mind. I would imagine that this might be the best way to end your life on a ventilator, if one had to choose between the two.

If I were an elderly person diagnosed with Alzheimer's, I would simply make a wish to be a DNR just so that I wouldn't become a ward of the state, a useless blob of skin on a bed taking up space and absorbing taxpayers money.

However, that would be my decision. I have to respect the wishes of others who think otherwise. Thus, life is very precious no matter how fragile, and each individual has to decide for himself. Grandma should be allowed to  choose for herself how she wants to die. This is why it is so important for physicians to be honest with their patients and talk to them about end of life options.

Then, let us consider the COPD patient who decides that he does not want to be placed on a ventilator. He is not necessarily end stage, but he is to the point that he cannot go without using his oxygen. However, he has a quality life to the extent that he is not one of those people who simply sits around and feels sorry for himself. He loves life. He loves living.  Yet he was also scared by the prospect that he might be placed on a ventilator and have to stay on it the rest of his life. So he makes the decision one day that he will make himself a dd not vent patient.

Then one day he is having trouble breathing. His wife drives him to the hospital and by the time he arrives there he is severely short-of-breath; his work of breathing is labored. The doctor looked the patient straight in the eyes and asked the question no one wants to ever hear: "If something happens to you, do you want to be placed on a ventilator?"

Of course now the patient is not in the planning stages. He is actually miserable, gasping for every breath. His oxygen levels are falling. His CO2 levels are rising. He is pooping out. He has a feeling of impending doom. He, however, does not want to die; he is not quite ready.

Then again, he does not want to go on one of those things either; he does not want to be intubated.

So, he asks the naive question that is really not so naive because the only people who truly knew the answer were standing in the bright room around him. Of course there were other COPD patients who knew the answer, but they were not in the room. His life, his destiny, was in the hands of the fine medical workers in the room.

"So," he says, huffing and puffing, barely able to get the words out, "How long would I have to be intubated for?"

"Well, the goal would be a day or two, but we really can't guarantee," the doctor explained. Of course she doesn't want to give false hope, but she also doesn't want the patient to simply give up hope at the same time. This is the ironic twist that we often face in the emergency room. She continued: "The goal is basically to rest your lungs and allow them a chance to heal. That's the goal. I can't guarantee anything, but that's the goal."

I stand there thinking, as I am getting my intubation equipment ready just in case the patient makes the decision, that the doctor made a good presentation. In fact, I couldn't have worded it better myself. The key words there were help you get over the hump and I can't guarantee anything.

By these short phrases the doctor threw the ball completely in the patient's corner. And, if the patient were to pass out, into the wife's corner. And if the wife were not there, the medical staff would have no choice but to make the patient a full code and do everything for the patient, unless they were 100% positive the patient was a DNR.

Another case I've seen is the elderly man with a chronically failing heart come into the hospital in respiratory failure secondary to the failing heart. The patient is non-responsive, and he is also not a declared DNR. The wife now is forced to make the decision of whether or not to allow nature to take its course, or to allow the medical staff to intubate her husband and place him on a vent.

"What should I do?" the patient's wife asks the Doctor.

"Well," the doctor says, "I know this is a difficult decision. Since you are in a very stressful situation right now and you want to make sure you don't make the wrong decision, perhaps it would be best to let us intubate your dad, and you can see how things progress, allowing yourself some time to spend with your family and to think. Then, in 24 hours or so, you can see how things are going with your dad. Either way, I can't make any promises. It's your decision."

The doctor pauses, allowing the patient time to think.  He then says, "Technically speaking, the goal of going on a vent is short term therapy to allow your husband's heart and lungs to rest. If things work out, he might come off in a day or two. However, I can't honestly say those odds are very likely right now. But, if things don't work out, he very well could be dependent, that's always a possibility. But if it comes to that, you can make a decision to terminate the vent if you wish."

After another pause, the doctor solemnly states, "However, if he doesn't go on a vent now, there is very little chance he will survive this."

Yes!  That was so true. The doctor was very honest with the patient.  He did was was necessary.

In this case, the wife decided to place her husband on the vent and the patient came off two days later with full mental capacity. Of course he was limited in what he could do, and had to go home with oxygen. And while his heart remained severely fragile, he was able to spend another two years with his family.

Thus going on a vent to get over the hump bought this man two years to say good-bye to those he loved, and allowed those he loved to say good-bye to him.

I talked to the wife a year after he died, she told me she was very pleased with her decision to place her husband on the vent. She said her dad was also very pleased.

One time we had a lady on a ventilator with ARDS, and as she was on the vent for the fourth week. It was becoming evident that she wasn't going to make it. The patient had already been given a slim 10-20% chance of surviving by the doctor.

But the family stood firm with their hope, and prayed the patient would not only come off the vent but have some quality of life thereafter. Even the family was starting to give up hope after a while, though. Then one day, as though by some miracle, the patient woke up and was eventually discharged.

I know that's a rare instance, but patients with grim chances of survival can survive. And while it might be fine to say, "I've seen people like this survive before," you still don't want to give a family member false hope.

Likewise, I have seen many cases similar to my above examples go in different directions. In the medical field, you just never know what's going to happen. And, when you are making end of life decisions, you never know what the right answer is.

There are times, though, where I would definitely recommend a DNR status. These would be elderly people over 90, and any person who has a terminal end stage illness. If you have an 80 year old lady dying of cancer, it would be kind of foolish to place that person on a vent, when all the vent would do is delay the inevitable, and cost the family insurance and taxpayers thousands of dollars in the process. I'm not saying that money is more valuable than life, I'm not saying that at all.  What I'm saying is that sometimes it's just noble to let nature take its course.

Yet, I see these people going on ventilators all the time. In many cases it becomes quite frustrating to see these people on the vent for weeks on end. And, this can quite possibly be one of the most frustrating parts of the medical field. Sometimes I even feel sorry for these people, especially when it appears to me they are trying to die, and their family members keep pushing for them to live.

Recently I placed a cerebral palsy patient on a ventilator. He is off now and back at home in the care of his family. The quality of life for this person was already pretty low, but the family loved this young man and truly valued the sanctity of life. We had to respect those wishes, and we took care of him as we would any other patient.

So, if you are wondering whether or not you want to be a full code or DNR, or whether or not you want to go on a ventilator should your body start to fail you, you should take some time to consider the what ifs.
It might be a difficult thing to stop and think about, but it could save you and/or your family members a ton of grief and stress.  It would help you and your family prepare for the end.  It would help you die with grace and dignity.  It would let you decide how you want to die.

As you can see, this is not an easy subject matter for anyone, including us in the medical field. And this has been and will continue to be an important ethical discussion for years to come, especially as we live in a world where we have the means to prolong life.