A Call for Awareness: A New Goal

As I have shared before on this blog, I am very passionate about my work as an occupational therapist, and for many years I have considered myself an advocate for individuals with disabilities.  However, it wasn’t until I became a caregiver of a person with a catastrophic illness that I really “got it.”  It’s a club no one really wants to join, but at some point many of us will, and, through my experience in helping to take care of my dad as he went through treatment for the brain cancer that took his life a short time later, I learned things as a health care provider, as a daughter, and as a person that I likely wouldn’t have otherwise.  

In today’s health care system, the bottom line is so often seen as the dollar: what's stressed is funding and reimbursement instead of quality patient care.  As a medical professional, I know that it’s easy to get caught up in productivity quotas, documentation, and administrative spreadsheets and paperwork.  But very few of those of us, if any, got into this field for those reasons; by and large, we became health care providers to try to help people.  Somewhere along the way, though, in many cases, our priorities are shifted.  Our focus is changed: we go from looking towards the horizon to staring at the road just in front of us as we work to get through the day-to-day procedures of our jobs.

Like a lot of times when dramatic realizations occur, something happened in my life that caused me to rethink my focus, to shift my priorities, to change my perspective.  Through telling the story of the health care that was provided to my dad during his ten-week long battle with brain cancer, I want to challenge the way other health care providers think about their patients, in hopes that that shift in perspective will help them to provide better care to their patients, especially those who are facing life-altering illness or injury.  I have decided to set a goal of writing a book, one that will come from parts of the story as it has already been told through this blog and from added accounts of what happened during the time of my dad's illness.  My goal is to tell the story piece by piece on this blog so that it can be shared in book format with people who are involved in the treatment and care of individuals with life-changing illness or injury.  

Through this project, I want to bring awareness to other health care providers and rehab professionals about the importance of recognizing that every patient has a story.  I hope to encourage those in the medical field to remember to look towards the horizon as they care for each patient, to think outside of the box, to see things through the patient's eyes, to understand that what they think is important for a patient's recovery may not be the same as the priorities of the patient, and to realize that supporting a patient's family is part of every intervention.  I want to urge rehab professional and others in the health care field to do their part to assist families in accessing services for both themselves and for the patient so that adequate support will be available even after discharge.  I want to remind health care providers that they are in a position to share their expertise in ways that have meaning to the patient, regardless of changes in function or of life expectancy.  I want to emphasize the fact that compassion is a part of every good treatment plan.  I want to tell this story with a goal of inciting a shift in perspective by underscoring the importance of patient-centered intervention and care of the patient as a whole, not just in medical professionals but in everyone who may one day be involved in the care of someone with a life-changing illness or injury.

Stay tuned ...

Off-Label Uses

Sometimes people use a medication or a health care product to help with things besides the ailment or condition that the product was intended to address.  This off-label use is often done out of necessity, when things recommended by health care professionals or others have not solved the problem.  It's more of a last resort, a whatever-it-takes type of effort, or sometimes just a belief in a wives' tale or a carrying on of tradition than a science project.

Vicks VapoRub ointment is one product that has been said to work for treating things other than what its label says it treats; a couple of its off-label uses are treating toenail fungus and repelling mosquitoes. 

Proctor & Gamble, the company that makes Vicks, has a disclaimer on their website that says their product "can be used for the treatment of cough associated with the common cold" but that they "haven't tested, nor has the FDA approved, Vicks VapoRub as a toenail fungus treatment" and, therefore, they say, it is not recommend for the treatment of toenail fungus.  I think there are lots of people, though, who swear that Vicks alleviates them of that condition.  Not having fungus-y toenails (yay for me!), I haven't ever tried using it for that, but I have tried it a couple of times for keeping mosquitoes away when I've run out of Off! and it seemed to work just fine for that.

One of my sisters has yet another off-label use for Vicks Vaporub: she puts a little bit of it under each of her eyes whenever she has trouble sleeping.  She's done that since she was a teenager; she says the fumes it gives off sting her eyes, which forces her to keep her eyes closed, which eventually causes her to get bored enough to go to sleep.  I don't see any kind of warning about that on the Vicks website, so I guess it's an ok thing to do, and, as anyone who has ever suffered (and I do mean suffered) from insomnia can attest, at a certain point in a sleepless night, it's anything goes/whatever works to provide a little shut-eye before the sun comes up.

When I was running competitively a lot in high school, I sometimes tried to emulate some of the rituals that my dad had surrounding his running routine. One thing he did that I started imitating then was taking a couple of swigs out of the bottle of Mylanta that we kept on the door of the fridge as soon as I came in from a strenuous run.  I didn't know why he did it; I just did it because he did.  Many years later, I happened to think about how we used to do that, and I asked him why he did it back then.  "When you run hard, most of your blood goes to your arms and legs instead of to organs like your stomach, and so a hard run can make you feel sick to your stomach, and Mylanta helps with that," he told me.  I kind of half-laughed and asked him he'd ever tried any other remedies for the same problem, and he said, "Well, I guess I've tried beer, but I'm not sure if that helped my stomach or if it just tasted so good after a hard run that I didn't care if my stomach hurt."

I don't think the company that makes Mylanta has looked into billing it as a special after-workout remedy for runners, but maybe they should.  I know of another off-label use for it that they could advertise, too: when my oldest child was a baby, I worked in a nursing home, and one of the residents there told me that I should try using a liquid antacid like Mylanta to treat diaper rash.  "Just put some on a cotton ball and dab it on the rash," she told me.  Later, when I tried it, I found out that it worked better than any diaper-rash ointment I'd tried.  I ended up telling a friend of mine who was also a new parent about it; luckily, she asked me for clarification of how it should be used before she tried it because she later told me that she first thought I'd meant that an oral dose of it should be given to the baby. 

One thing that has surprised me about the process of grief has been the way the emotional pain often flows over into physical pain, and one way that that has occurred for me has been in the form of back pain.  Before I'd really realized what was causing the pain that plagued me night and day, I had been attributing the pain to poor posture or just to having slept  wrong, and I tried the usual treatments - ice, heat, stretching, pills, chiropractic.  Nothing worked, at least not for very long.  Finally, after reading about the grief process, I came to the conclusion that my sorrow and the other emotions tied up with the whole process had sort of settled into the joints and the muscles affecting my back, and I told myself that, like a lot of the intense emotional pain I was feeling at the time, I just had to ride it out until it got better on its own in time. In the meantime, though, especially at night, I ended up calling on my old running training buddy, Icy Hot.  The weird first cold-then hot numbing action it has helped me to relax; some nights it was the only thing that allowed me to go to sleep, essentially making it yet another product with an off-label use, this time to curb the often almost-debilitating pain of raw grief.

No Answers - Part 3: Doctors and Death

Continued from No Answers - Part 2: Informed Consent

There are some questions that are probably commonly asked by people who are left behind after a person with a terminal illness dies, questions to which I realize there are likely to be no answers but that keep coming back to me nonetheless.  Some of these are centered around patient care; as a health care worker myself, I fully understand the difficulties of staffing shortages, paperwork demands, insurance issues, and the like.  But I also think that there are unfortunately some health care workers, including some doctors, who aren't really focused on the quality of their care.  

We came across some of those in my dad's case, and I will always remember them, just like I will never forget those who provided my dad and my family with outstanding care and compassion.  I just wonder if any of them will remember my dad.

I think there should be some kind of required continuing ed for  physicians, and maybe for nurses and some other health care workers too - especially those who frequently treat patients with catastrophic diagnoses - a training that could help them to realize (or to remind them) that patients are PEOPLE, not cases or numbers or statistics. I view much of what happened  in my dad's care as being a symptom of what's wrong with our health care system (and maybe even with our society) today: so often we just accept and often even continue to put on a pedestal the physicians who don't or can't take the time to stay on top of patient care as we FIGHT for treatment, for attention, for proper care. The utter lack of case management and the absolute lack of follow-through and follow-up are perhaps what disturb me the most about what went on during Dad's illness.

Here's something else I wonder about: how much - and what kind of - training is given to physicians, in particular to oncologists - about helping patients and their families deal with end-of-life decisions, and about coping with such matters themselves?  A thought that keeps coming back to me again and again is this: I know physicians take an oath to "do no harm," and yet in some cases those same doctors continue to prescribe aggressive treatments and fail to present hospice - or other types of palliative care - as an option, presumably based on the fact that those doctors assume the patients want to fight to the end.  How much of a doctor's own perspective is imposed on that of his patients?  Even the most well-meaning physician could feasibly become so emotionally attached to a patient that he forms an opinion based more than just medical knowledge about what choices that person should make, and that could easily impact the type or the amount of information he presents - or the way that he presents it - to the patient and the patient's family.

And so the question becomes - where does the "treatment" end and the "harm" begin?  When does the good (or the possibility of good) stop outweighing the bad, the awful side-effects and the risks??  It becomes a judgement call, one that can easily be made with emotion interlaced with the medical knowledge.  In fact, isn't that what we want in a doctor: someone who cares about us on a personal level??  And yet that very situation could affect our care by playing into how our doctor handles things on down the road.

I think this is particularly tricky in the case of an oncologist.  Cancer doctors are in the business of providing Hope to their patients.  Many of them spend more time per appointment with each patient than doctors in other specialty areas do, and they usually see their patients more often than other doctors do too.  As well, the subjects that are discussed within the walls of the rooms in the oncologist's office are very often much more emotional than the usual chit-chat that goes on in the offices of other doctors.  All of this leads to the establishment of more of a connection between an oncologist and his patients - again, not at all a bad thing, but something that must enter into the recommendations given about treatment, including end-of-life treatment issues.

In a situation with a terminal diagnosis, I know all too well how very hard to figure out the balance between hope/pushing forward and acceptance. The oncologists we dealt were only recommending aggressive treatment; looking back, I have to wonder if it was because they were full of hope/faith or if that was just their focus and their training. I know that some oncologists are better about that than what our experience was and that some try their best to keep a patient's overall well-being in mind rather than just trying to have a great case to write up in their medical journals. But still, when the patient is you or your loved one, you have to do two things: you have to have Hope, and you have to have faith that your oncologist is looking out for your best interests (and that he/she knows what those interests are).  What we found is that in a situation like ours Hope is linked to goals that peel off in layers like an onion - hope for a cure, hope for treatment that gives more quality time, home for comfort, hope for him to be pain-free and hope for peace.

As I said in the last post about informed consent, the options just weren't presented to us or to Dad; the oncologist originally told us that we would be taking Dad home from the hospital just a few days after brain surgery, but, at the urging of the hospital physical therapist who had seen Dad a total of one time, the doctor ordered that Dad go to rehab, where essentially Dad's care was managed for the most part by the Rehab Director, whom we later realized knew little to nothing about GBM and its treatment.  We saw the reasoning behind Dad's participation in a short-term rehab program; the way we looked at the treatment as opposed to a "just going to a beach" scenario was to picture my dad a little further down the road.  We hoped - and we believed - that Dad would improve which would make the rehab stay well worth the effort, and we knew that Dad would want to go "all in" until he couldn't.

At one point in looking back at what we decided on for my dad, I said that if I had to do it again I wouldn't have had him go to three weeks of rehab (because he didn't get better functionally during that time), but then my mom pointed out that if he hadn't gone, he wouldn't have  even had the chance to have gotten functionally better and we would probably always think it was because we didn't have him go. In other words, we would have linked the lack of quality of his life to our decision for him not to go to rehab, even though we learned through having him go that there wasn't a link or a possibility for him to gain more independence, based on his individual set of circumstances.

Another obstacle for physicians in caring for terminally-ill cancer patients has to do with the rules of hospice: in order to qualify for hospice, a cancer patient not only has to have a life expectancy of less than six months but also must agree to forego any further chemo treatments of a "curative" nature.  When you think about it, that isn't really fair, especially considering that patients with other terminal conditions aren't forced to stop their medications to enter into a hospice program.  I can see how it could be difficult for an oncologist to switch over from thinking "I am going to help this person beat the odds" to a mindset of comfort-care only.  I can see where an oncologist would keep wanting to offer more - a Plan B, and then a Plan C, and so on, offering Hope, if not for a cure then for improvement.  I can see where the concept of quality of life (what even is that for most terminally ill patients?) can be confusing.  Once the cancer has set in for good, there often isn't a whole lot of quality, especially if brutal treatments like some chemos are continued, and so it become a judgement call, which must be made based on the experience of the physician and, of course, on human emotion.

Consider this:  when a person goes to the doctor for a more run-of-the-mill illness, like a sinus infection or or a sprained ankle, the doctor doesn't give that person a choice as to whether or not he should be treated or as to what the treatment will be.  As long as there is a clear course of action in treating the condition, the doctor orders the treatment.  

In rarer cancers, and certainly in cancers that are being considered terminal, that changes.  The oncologist presents the patient and/or the patient's family with options and gives them the power (and the burden) to make a choice.  Sometimes the patient even finds out about treatment ideas on his own and presents those to the physician.  Once everything is on the table, though, inevitably the question that is asked of the oncologist is this: What would you do if this were you or your loved one?  And that's where the personal opinion and the emotion and the potentially-clouded judgement come in.  It's what we ask for at that point, because we have no idea what else to do.  We need to feel that we can trust someone, and we hope that that person can offer us some hope, in some form. Bargaining is in full play at that point in the disease process: if the patient can't be cured, if he or she cannot be granted more time, then of course we want them to be afforded comfort.  

About that question, the "what would you do" that every oncologist must get asked on a daily basis, I am here to tell you that no one can ever truly know what he or she would do in a given situation.  Even an oncologist who has dealt with countless sad situations can't accurately say how he would handle things if he or someone he loved were diagnosed with a terminal illness.  Each person, each situation, each relationship is different, and so none of us can predict with any degree of accuracy. (Click HERE to read the story of what happened in my dad's case, when he was so sick and not getting any better in the hospital, when I asked the oncologist what he would do if it were his father who was lying there in the bed, begging to be taken home.)

We can suppose, though, and we can ask for guidance, with the hope that given his experience the oncologist will have more knowledge about such matters than we do at that point.

That's what we wanted to happen with my dad; we expected the oncologist to bring up the subject of comfort care with us as an option when it started to look like the course of treatment that we had chosen might need to be reconsidered.  However, what actually occurred is that we guided the oncologist towards that thought in the process; he didn't guide us.  I have to say that it would have made a little more sense for the guy to avoid the subject of hospice if he had been involved in my dad's care for a long time and/or if he knew my dad on a personal level, but neither of those things were true.  In actuality, from my perspective, his not seeing the whole picture when we needed him to the most was because of one or two things - because he was too busy to be involved enough, or because he just wanted my dad to beat the odds so he could improve his own statistics.  

There it is.  I realize my perspective here is likely tainted with anger stemming from grief, but that's the honest truth of how I think things went in the end with the oncologist.  We were only presented with a minimum number of options in the beginning for Dad, and we weren't presented with any at the end, until we put forth the idea of hospice and comfort care.  I expected to be guided through that delicate process, and I'm not sure I'll ever recover from the shock that we weren't.

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.

Stunned!

On Monday of this week, Congressman David Dreier (R-California) suggested in a speech he gave that people with brain tumors should not have access to “millions and millions of dollars in health care provided” and indicated that he is in favor of allowing private insurance companies to deny coverage to these individuals.  

Here’s a clip of him spewing idiocy talking about it:

Interestingly, what he’s saying that he thinks “should exist” is already in place as part of the Affordable Care Act (aka Obamacare) in the form a high-risk pool program which results in health care coverage for Americans with “catastrophic” pre-existing conditions.  Why he has chosen to  single out people who have brain tumors over other terminal illnesses and/or very expensive medical conditions is beyond me, as is his entire point of view on this issue and the reason that he felt like it was a good idea to make this speech in the first place.

I can only hope that his comments were taken out of context or, failing that, that he reconsiders his stance on healthcare regulations for those with brain tumors and other life-threatening illnesses.   I also hope that he and his loved ones are never in a position of having to deal with a brain tumor in the future.