No Answers - Part 2: Informed Consent

Continued from No Answers - Part 1: The Oncologist

Besides the unresolved issues on my mind from when my dad
was sick that relate to the oncologist on Dad's case, another
thing that concerns me is the way that informed consent was 
handled when Dad was in the hospital.

Informed consent is the process by which a fully informed patient participates in making decisions about his own health care. It originates from the legal and ethical right the patient has to direct what happens to his body and from the ethical duty of the physician to involve the patient in the management of the patient's own health care through educating him about his condition and any proposed treatments as well as reasonable alternatives and the reasoning behind the physician's recommendation.  It also includes informing the patient of the risks and benefits of the suggested course of action and any other possible decisions after which the patient can use that information to either accept or decline the treatment.  

In cases when the patient is deemed unable to participate in this process, another person can be appointed to serve as proxy through a medical power of attorney or other legal process.  

When it became clear that my dad was not consistently oriented (i.e. he was confused about certain things) upon hospital admission, informed consent fell to my mom on his behalf.  According to the definition of informed consent, this meant that she was to be educated about Dad's condition and of the options for treatment and the advantages and disadvantages of each.  This is basic Medical Ethics 101, a process of which any physician - and certainly any surgeon - should be extremely aware.

This is where my question comes in:  Why was that process not followed?  

At admission, a neurosurgeon was assigned to my dad's case, and right away he started saying that a specific type of surgery called "debulking" needed to occur just as soon as Dad was stabilized seizure-wise.  We were never given any choice of neurosurgeon, and no alternatives to this procedure were ever presented to us.

Prior to the surgery, my mom, serving as Dad's medical power of attorney, was directed to sign the consent form that listed all the risks, but really she didn't have a choice in the matter - what was she going to do: not give the consent when we'd been told he needed the surgery to save his life??  We were 100% given the impression that the neurosurgeon on the case was the only option we had for whatever reason and that, without that surgery at that time, he would die, right then.

Later I learned that was not necessarily true.  The surgery 

could possibly have been delayed or maybe even avoided 

with no change in prognosis.  [When we met with the team of top neuro-oncologists at Duke later, we learned that the aggressive growth pattern of GBM meant that it doubled in size every three weeks and that, because of the time required for recovery after surgery before treatment could be started, since the surgery the remaining portion of the tumor had grown to almost half of what the size of the tumor was originally.  In fact, the Duke doctors said they felt there had been "very little surgical benefit" for Dad.] 

I know now that there were other surgical and non-surgical options that should have at least been discussed with us, if only to explain why they might not have been recommended by that particular neurosurgeon in my dad's case.  Because they weren't even mentioned, though, I don't know if they were viable options or not.  At that point, though, we didn't know there were any other choices and we weren't told any differently, and so we just went with what was presented to us as the only course of action.  And so I am left to wonder - why didn't the surgeon even consider trying other techniques that are frequently discussed as a treatment for brain cancer, those that are showing evidence as giving a better surgical and prognostic outcome - things like intraoperative stimulation mapping and Gamma Knife radiation?  Why didn't he bring up the option of delaying surgery to investigate the use of gliadel wafers (which are implanted to deliver medicine right at the tumor site) or to look at the possibility of taking a sample of the tumor for use either for testing to see if the cells were chemo-resistant or for an dendritic cell tumor vaccine?  

Back then, though, we didn't even know what questions to ask, or even that we should be asking questions.  We didn't think about getting a second opinion or doing a background check of any kind on the neurosurgeon, at least partially because we were told that time was of the essence.  I think we assumed that particular neurosurgeon was the best at that hospital or at least that he was the neurosurgeon with the first opening in his surgical schedule.  It seems crazy to me now when I think that I never asked how many of that type of surgery that neurosurgeon had done or how many patients with that same diagnosis were treated in that hospital per year.  [I later asked a nurse on the oncology floor how often they saw GBM patients there, and she said once or twice a year.]  I remember all too well that we were in such a state of shock and panic and so frantic to try to take care of and to protect Dad that we didn't have time to research things.  We just trusted the advice we were given and forged ahead.

These days, I have a note in my cell phone that lists things I want to remember if I am ever in a similar situation (Is that doomsday thinking or preparedness??  I'm not sure.).  It includes these statements:

*When a doctor (or other medical staff member) makes a recommendation, ask what else they considered or could have considered and WHY they came to the conclusion that they should recommend that specific thing.
*When making a decision as to whom (or to where) to turn for care, directly ask WHAT MAKES YOU DIFFERENT FROM OTHER DOCTORS (or what sets this facility or service apart?)? 
*ALWAYS ask what that person's (or that facility's) experience with that diagnosis, that surgical procedure, etc. is SPECIFICALLY, termed in frequencies and outcomes.

In my dad's case, though, without a doubt, we did what we knew to do.  The rest just wasn't something a person would know in everyday life.  Was the right choice made?  Yes, based on the options we were given at the time.  What would we have done, if we knew then what we know now??  Of course I will never know, nor would I if we had been presented with all of the possible choices and then given the opportunity to select one.  But at least in the "fully informed" scenario, we would not feel as if there were facts we weren't told or options that weren't considered.  Today, in the midst of my grief, I certainly don't feel that there was any effort at all by the medical team to try to individualize Dad's treatment, and I am left to wonder why we were only given certain information.  Did the medical team actually feel as if it were our responsibility to do the research and then to ask questions about the other possible treatments?  Did they have such as strong opinion about what the best course of action was that they didn't tell us what else could have been done?  Did they think we were somehow incapable of understanding the more complex information about other options?  Did they think we (or Dad) weren't deserving of knowing about those alternatives?  Did they themselves not know what else was available?  Did they lack the training in performing the other techniques?  Chalk that up to the list of things we will never really know.

Courage

"Courage is rightly esteemed the first of human qualities ... because it is the quality which guarantees all others." ~Sir Winston Churchill

When I was a freshman in college, I took a class during which we learned how to rappel.  The culmination of the instruction of that part of the class was that each student had an opportunity to descend by rope from the top of a tower that stood three stories high. 

At the beginning of the semester, in my 18 year-old mind, that endeavor didn't seem to me like it was going to be too tough.  I wasn't scared of heights, and I was in pretty good physical condition.  I listened carefully to the instructor talk about the technique and the safety information, and I watched videos of others rappelling.  When the day of the descent finally arrived, I confidently climbed up to the top of the tower, hooked in to the roping gear, and backed up to the edge.  And then I looked down - and that's when the fear hit me.

I tried in vain to talk myself into stepping off the ledge for several minutes.  The instructor, who had positioned another instructor at the top, shouted words of encouragement to me from down below.  My legs just wouldn't move.  Finally, the guy at the top said, "The longer you stand there, the harder it's going to get to take that first step.  On my count of three, you're going to step off.  One, two, ..."  I took a deep breath, and I did it.  The warmth of the sun on my face, the feeling of gliding so freely, and the big burst of adrenaline all hit me at once, and I loved it.  It was, in the true sense of the word, awesome.  

But the best part of the descent was at the bottom, and it came from the words spoken by the instructor, words that I have thought about many times since that day:  "And that," he said as he turned from watching me to address the rest of the class,  "is a perfect example of the difference between courage and bravery.  Bravery is something a person can be born with, but courage is something we have to dig deep to find.  It's natural and often even smart to be afraid, but, as long as you are prepared, you can't let that stop you from forging ahead - and that's courage."

Before that day, I had never considered that there was a difference at all between courage and bravery; I actually thought they were synonyms.  Upon further consideration, though, I began to see that there is a distinction between those two words.  Bravery is the ability to confront pain or danger when one is not afraid.  Courage, on the other hand, is the ability to take on a difficult situation or pain in spite of the presence of fear.  Courage requires using a thought process in order to overcome a natural emotion; it is the willful choice to forge ahead regardless of the possible consequences.  A courageous person understands the risks of the task but is driven to participate anyway for a greater purpose.  

From my perspective, there are a couple of different types of courage:  Physical Courage, which often involves overcoming fear of the risk of pain or death to do things - like rappelling, getting up to try again after falling off a bike, running into a burning building to rescue someone, climbing a mountain, or undergoing a medical procedure.  Here's a video that gives a great example of physical courage (it's 17 minutes long but well worth taking the time to view it!):

And then there is Mental Courage, which may involve doing something that poses a risk of something negative socially happening, like embarrassment or rejection.  This includes things like standing up to a bully, giving a speech to a crowd, disregarding peer pressure, and being a leader.  It also encompasses ethics and doing the right thing, even when that puts one at risk for consequences such as disapproval of others.  It's pushing past a fear of rejection to put oneself "out there" by being true to one's own beliefs and essentially to oneself.  And that is how courage is linked to the most bonding of human traits: vulnerability.  A person who has the courage to accept that he isn't perfect but the depth to love himself and to see himself as worthy anyway not only ends up being a happier person but also gains a different kind of strength than cannot be gained in any other way.  And, in accepting himself as an imperfect being, he shows others that variances - and vulnerability - are the essence of the beauty of life.  

What I have taken away from that is the understanding that courage has to do with perspective and with the way we adapt to the challenges and to the circumstances of our lives.  

Without a doubt, what my dad had a great amount of physical courage, and I think that was likely something about him that a lot of people noticed and admired.  What I have found to be even more impressive about him, though, and what I hope to go out having had is the courage to be imperfect, the compassion to be kind to oneself and to others, the conviction to stand up for myself and for people and things that are important to me, and, last but not least, the courage and the confidence to show vulnerability, which, really, is the thing that connects us as human beings. Vulnerability, like the imperfections seen in granite, is what makes people unique, memorable, and beautiful. 

The Sandman Has Left the Building

 

When a person gets a splinter in his hand or foot, pain comes from the foreign object as well as from the swelling of the tissue around it.  A similar thing happens with a brain tumor in that the surrounding tissue in the brain swells, which can cause a variety of problems other than just pain, including an increase of neurological symptoms and seizures.  This swelling, or “edema,” is treated by steroids, usually given in high doses for a long period of time.

Like most of the medications given to cancer patients, with this type of treatment comes the potential for side effects, many of which in turn require lifestyle changes and/or the addition of other medications.  For example, steroids like the Dexamethasone that was given to my dad can cause problems like severe heartburn, swelling of the face and extremities, muscle weakness, headaches, and extreme difficulty sleeping.  The risks were even greater than usual given the dosage at and prolonged period of time during which my dad had to take this type of medication, which is 30 times more potent than the naturally occurring hormone cortisol and 5 times stronger than the most commonly prescribed steroid prednisone – and Dad was on four times the normal dosage of it. This powerful steroid, coupled with the chemo which had side-effects like nausea, a decrease in appetite, extreme fatigue, muscle weakness, and decreased immunity, among other things, contributed to the ongoing struggle of trying to provide comfort while waiting for the treatment to affect the cancer cells. 

And herein lies the dilemma that we faced, one that is faced by every cancer patient and his or her family, especially in cases when the treatment is not considered to be a potential cure.  From my perspective, when the goal moves from a cure to providing comfort through symptom relief and buying time, the decision of which remedy to try and, in cases like ours, which medical professional to listen to, becomes even more complicated. 

Throughout Dad’s illness, he had problems in several areas that affected his mobility, independence, and safety.  One of the most pervasive obstacles, though, was the chronic insomnia, which, oddly, also came with persistent fatigue.  Dad talked a lot about being so tired and really wanting to be able to go to sleep.  Nights were the worst for him as that’s when he expected and was expected to sleep and that’s when his inability to follow a typical schedule really seemed to bother him the most.  Every day he had such Big Plans to sleep that night, and every night he just couldn’t do it.  It wasn’t as if he had his nights and days mixed up, either, like people sometimes do; except for the couple hours at a time of deep, pain-medication-induced sleep and a few short naps here and there  – he just really did not sleep. 

Because he needed supervision at first and assistance later to get up to go to the bathroom or to get medicine or something to drink due to the lack of sensation on his left side and problems with his balance and later weakness, at least one of us was awake with him around the clock during the entire time he was sick.  We took turns sitting with him and lying in the bed with him.  If we turned out the lights and the room got quiet for a minute, he would sometimes say, “Hey!  Is anybody even in here?” to get our attention.  He seemed to really need companionship all the time, for security and safety and just plain old conversation.

The tricky thing about taking such a powerful steroid over time is that it eventually takes over and shuts down the body’s production of the naturally occurring hormone that it is at first just supplementing.  That makes it life-threatening to have too drastic of an adjustment in the dosage of the drug.  The dosage has to be closely monitored and medically supervised for just this reason.

We were told by doctors that the steroids helped to prevent seizures (although he was also on an anti-seizure medication), to decrease headaches (although those persisted and then worsened), and to keep the remaining tumor from compressing other brain structures.  Of course, every time the topic of taking steroids came up in front of Dad, he chimed in and said he hoped he didn’t get caught for doping when he finally made it to the Olympics or the Tour de France.  We explained to him several times that it was a totally different type of steroid, but he preferred to pretend that the type he was taking was going to make him stronger, and, after awhile, we figured it was a good way for him to “psych himself up,” as he liked to say.

I was glad that he was being given a drug that targeted all of those problems, but I grew to hate the side-effects for him, especially the muscle weakness, the sleeplessness, and later, the suppression of his immune system that I think was a big part of how he got so sick at the end.

Every chance we got to talk to a doctor about Dad’s case, we expressed our concerns about the insomnia and the resultant fatigue.  We were told by the neurosurgeon in the hospital just after Dad’s surgery that the dosage would be decreased over time under the supervision of the oncologist.  When we met with the oncologist in his office while Dad was in rehab, he wanted to wait until Dad was discharged from Rehab.  When that happened, the oncologist and the rehab director wanted to wait until we consulted with the neuro-oncologists at the Brain Tumor Clinic at Duke.  The neuro-oncologists recommended decreasing the dosage after the second dosage of chemo three weeks later, but at that time his headaches had gotten worse and so the oncologist was hesitant to change the dosage and instead upped the pain medication which was supposed to help Dad sleep but didn’t.  He said we would look at a change in the steroids again at the next chemo appointment, to which Dad never made it because he ended up in the hospital with a life-threatening infection.  From there, he came home on hospice. 

I guess our optimism every day about the possibility of Dad being able to sleep that night was part of our Denial.  Or our Bargaining.  Or our Desperation.  One of the last nights he was in the ICU, my sister and her husband were with him, and he came up with the idea that if he had some sunglasses on he would be able to sleep.  The room was fairly dark anyway, but they were game to try anything that seemed like it might help him.  My brother-in-law had recently had Lasix surgery and just happened to have a pair of heavy-duty sunglasses with him, and he gave those to Dad.  Dad put them on and said, “This ought to do the trick,” but again, no luck.  

The one good thing though that came from his 70-plus nights of very little to no sleep was that my mom, my siblings, our spouses, the grandchildren, and I all got to spend more time talking to him.  My sisters and I agree that we spent more time just hanging out with him and talking to him during the time he was sick than we had since we were kids.  He couldn’t really focus on TV or reading for very long, and even music irritated and/or distracted him, and so we just talked.  So I guess in a way I should be grateful to the steroids for increasing the amount of awake-time I got to spend with Dad, but, really, it’s Dad that I am grateful to, for sticking it out, for being such a warrior, and for all those late night talks.