The Need for a Patient Advocate

What it's Really Like in the Hospital

            Did you know being admitted to the hospital is the 3rd leading cause of death in the US? I'm not making this up - 100,00 people die each year as the result of often simple medical mistakes and another 100,000 die from hospital acquired infections. Health care in this country is broken - so broken that we don't even realize how broken it is and it's broken in ways the media is ignoring - or is reluctant to cover because of the long reach of the medical industrial complex. The money and power behind our medical system means the world of doctors and hospitals has remained unbelievably unregulated. Think about it: we have detailed rules about how long a truck driver can be on the road, systems in place to carefully evaluate airplane crashes and detailed rules about ethics and government employees (my husband, Stuart, isn't supposed to accept as much as a cup of coffee from a government contractor) and yet a surgeon who's been awake for 48 hours can cut you open, operate on your heart or remove an organ. If he makes a mistake there isn't a system in place to evaluate what went wrong or how to ensure it doesn't happen again. And hospitals, doctors and Big Phamra are intertwined in incestuous and hidden ways.
 

            My interest and awareness of healthcare policy and healthcare research, like my interest in politics, has been around as long as I can remember. My car accident in 1992 and resulting chronic pain only heightened my awareness (but severely limited my physical capacity to aggressively pursue these interests) . Thus, when Jake sustained a severe traumatic brain injury (TBI) in 1999, I followed him into the ER with a great deal of concern and not just a little bit of wariness. From our first moments in the ER at one of the country's "best" hospitals we found we could not leave him alone for one second. We found that a loved one in an intensive care unit is more vulnerable and unprotected than an infant.
 

            Several weeks into our time at the Pediatric Intensive Care Unit (PICU), after several harrowing episodes where our presence (Stuart, my mom and my sister) and our insistence had saved Jake's life (see "Our Scary Time in the PICU" and a forth-coming post about his life-threatening blood clot), the doctor in charge of Jake's medical team called a meeting with our family - Stuart, me, my mom and dad, sister and brother-in-law.  We were informed that our 24 hour a day bedside oversight was making the nurses "nervous" and the doctor insisted we needed to be there less. 
 

            My Inner Wonk, of course, was furious. I informed the doctor that I had just read the results of an Institute ofMedicine Report estimating that 98,000 people a year die from simple, preventable medical mistakes. This hospital had already, right before our eyes almost killed our son - not once, not twice, but three times! There was NO WAY we were going anywhere and we made that clear. This was especially galling since in the meantime the doctors representing various specialties necessary for Jake's recovery repeatedly reported - thru nurses and residents, not in person of course - that they were way too busy to ever meet as a team to coordinate his care with each other - much less with the patient's family! It was clear to us - we were not the problem!
 

            This meeting with the doctor and much of our ordeal was recounted in a Washingtonian article about Jake. My friend Regina Holliday used that quote about the 100,000 deaths a year on the jacket she painted for me as part of her Walking Gallery. I proudly wore it for the first time April 27th to the premiere of the Discovery Channel special "Healthcare Tsunami: Bring Your Best Board." There I learned, much to my dismay, that no one has done a comprehensive assessment since the 1999 study, but most experts agree that is still a reasonable estimate. Do the math: since Jake was hospitalized in June 1999 approximately 1.3 MILLION people have died needlessly from easily preventable medical mistakes. The documentary then revels that IN ADDITION, another 100,000 die each year from hospital acquired infections! 200,000 people! - each year! year after year! Thus my contention - my rant - your average hair dresser is better regulated and has more oversight than your average doctor!
 

            Those numbers - 200,000 a year - 2.6 Million since 1999 - makes going into the hospital the third leading cause of death in the US! Really! - going into the hospital = 3rd leading cause of death! If you find that unbelievable - if you can't believe it - please, read those numbers again. If you still don't believe it - go here - listen to DennisQuaid tell you. 
 

            Many people helped us get through Jake's hospitalizations and the months and years of rehab after his release. As a way of "paying back"  - an attempt to make something positive out of our experiences - I began to put together hospital survival kits for friends and family who were going into the hospital. Over the years, as I heard one disheartening story after another of stupid, thoughtless medical mistakes I began to include a letter in my kit - a letter about the need for patient advocacy. Seeing the Healthcare Tsunami documentary and learning recently that a friend's father was going into the hospital prompted me to pull up my letter and update it. I want to share it with you so you can prepare someone you know before they go into the hospital - to give them a chance to not be one of the 200,000 this year.

 

Hospital Survival Pack

Dear Friend -

These days time in the hospital can be very chaotic and trying. The Discovery Channel documentaries on health care safety - "Chasing Zero" and "The Healthcare Tsunami: Bring Your Best Board" have highlighted that 100,000 people a year die from medical mistakes and another 100,000 die from hospital acquired infections. Those facts mean that being in a hospital is the 3rd leading cause of death in the United States! 

For the person who is the patient –  I want you to relax - your job is to get well and not worry – you don’t need to be in charge. For the person who isn't the patient - I don't want to scare you, but for far too many patients, their time in the U.S. medical system is disjointed and uncoordinated. This state of affairs requires that each patient has an advocate - an advocate who is there as much of the time as possible. 

As the advocate you ARE in charge and your job isn’t to worry, but to be vigilant  – in all situations – with doctors, nurses and any family member who is not being helpful. You need to know about everything that is supposed to happen, especially keeping on top of medications and allergies. You'll  need a notebook  to keep track of things and some paperclips so when a doctor gives you his or her card, you can attach it to the notebook with your notes about what his/her role is in the patient's care. (There can be more than one advocate, but that means taking and sharing  good notes is especially important!)

It is OK for the advocate to question doctor’s orders that don’t seem to make sense or don’t seem to be helping or working. It's OK to ask for clarification, explanations, follow-up and follow-through. Medical professionals know a lot, but they aren't necessarily smarter than you - they just studied something different in college - and they do not know or love your patient they way you do.

Before surgery, if the patient is offered an epidural for pain management post-op consider it skeptically and discuss with your surgeon. When I was in pre-op for surgery in 2009 at John Hopkins Hospital, the anesthesiologist came to talk to us and brought up the epidural thing out of the blue. She lead us to believe that my surgeon was recommending it given my chronic pain issues. We tried to find my surgeon or her resident, but no one knew where they were. The pre-op nurse and the anesthesiologist pushed us to make the decision, again presenting it as my surgeon's idea. By the time my surgeon showed up the epidural was already in and she was clearly not happy - but the anesthesiologist was pleased since she'd scored an extra procedure - we felt like we were in the middle of a bad episode of "Grey's Anatomy"!

Other reasons epidurals aren't always great for after surgery pain:  An epidural has to be swapped out after surgery and replaced with either pain pills or a pain medicine pump and the nurse, doctor or resident  who takes out the epidural  is never the same as the nurse or resident who sets up the pain medicine pump so there is always a window when you're not covered on the pain med front (this happened to me ). Secondly, the epidural site will hurt (sometimes a lot) for a couple days afterward and leave you wondering about the trade-off in pain. (My grandfather who was paralyzed from the waist down from a falling accident many years ago and who was really tough when it came to pain, complained bitterly, for several days about the residual pain from an epidural site.)

In our experience, things for the patient fall apart in the window after surgery, when the nurses are supposed to take over from the recovery room nurses the post-operative pain issues. No matter what the doctor says, no matter what the nurse says, no matter what the patient says, DO NOT leave the hospital until at least the first round of post-op pain medicine is given and has been in for a few hours. Many times the first dose is of something makes the patient throw up or doesn’t work and the nurses on the floor can be really slow to address that. Once the pain gets out of control it is really hard to get it beaten back. For the same reason, make sure the nurse is on time with the next dose. Many hospitals allow them a window of 60 to 90 minutes past when a drug is due, to get around to giving it – that can really be a disaster – track her down and insist it comes sooner.

With that delay in mind: If the patient has the option of a pain medicine pump, it can be a good choice since the patient will  have less of the ups and downs of pain as pills take effect or wear off and  the bag of liquid pain meds lasts longer than the pills, so there are fewer opportunities for your dosage to get behind. The patient will be told she can push as often as she likes, but the machine will actually only allow doses at set intervals.

Thing to know: if the patient does the pump thing and only pushes the pump at the set interval (and not closer together) the doctor will assume your pain is under control - without asking! Medical protocol insists that if the patient is in pain, she will push the pump more often, even when  she knows pushing more frequently is futile! (Really, we had a big argument with doctors about this at another of the country's "best" hospitals.

Unfortunately, the role of the advocate requires being a bit of a pain-in-the-xxx. To soften this with the hospital staff, be as respectful as possible while still being really insistent. Being very knowledgeable about your patient's condition and treatment plan goes a long way. So think about simple acts of kindness. Bringing an extra cup of coffee, share a snack or a treat, show up with dark chocolate toward the end of a shift. You can also take over a bit of patient care to lessen their burdens. My mom, who trained as a nurse earlier in life, did Jake's sponge baths while he was in the ICU. Stuart took over Jake's nightly baths later on when we moved to the rehab hospital. And among other things, I learned to change out Jake's trach tube as required twice a week. When we took the time to get to know them, nurses began to choose us for their shifts and coincidentally they tended to be the best nurses on the floor (I think they were less put off by us). This allowed them to really get to know Jake and his care plan which was great for many reasons (we even helped one nurse get over her lifelong fear of dogs - her boys thanked us before we left!)

Finally, if one of your primary advocates/caregivers has health issues themselves, think about enlisting the help of a high school or college age niece, nephew or grandchild to help. An extra pair of young legs can really help and younger energy can also lift spirits. When I was 14 I was my grandpa's helper for a number of weeks while my grandma was in the hospital. In addition to carrying things, getting coffee, reading maps, I read the newspaper to my grandma and kept her up to date with current events. 

 Here’s what I've put in your hospital bag and why:

1.                Some kind of rich skin lotion and lip balm: for both patient and advocate – hospital air is nasty dry

2.                Eye pillow & eye shade: Again for patient and advocate. Hospitals are really noisy and bright and you may find it hard to nap when the opportunity arises. Someone gave me an eye pillow when I was sleeping in Jake’s room for 5 months– it changed my life.

3.                Ear plugs: See above

4.                Quarters and dollar bills: for advocate’s use of vending machines (I've found some big hospitals now have machines that take $5 bills or credit cards, but not always.)

5.                Massage lotion & oils:  For patient. Even when you hurt so much you don’t think you could stand to have anyone touch you, take it from someone with way too much experience in this, sometimes a simple foot rub or hand massage or leg rub can really change how you feel – really. And giving a hand or foot massage to the patient could give a family member or good friend something to do and make them feel useful.

6.                Additionally, extra massage oil/lotion if the patient will have some physical therapy it can be really helpful. With Jake I was surprised how much massage the PT’s used before starting movement and I was surprised they didn’t have massage lotion around – they just used regular lotion which doesn't work well for that. When I started bringing massage lotion, they really appreciated it, as did Jake.

7.                The notebook, paperclips and pens/pencils (I love ultra-fine sharpies because they can also be used to mark personal items if needed and if you get a couple colors then you can doodle too)

8.                An extra sweater or light blanket for advocate - hospitals for reasons I've yet to figure out are often crazy cold - especially ERs!? If you're really prone to be cold or the patient is, pack some of those instant heat packs that you can stick on under your clothes - they sell them at CVS, etc, but are much cheaper at Costco.

9.                Following are things that you should add - Cell phone - no research has ever shown cell phones interfere with hospital equipment so don't worry if you have one with you and it's on. Most hospitals have given up on a ban and will let you use them in most areas. Even if they don't you can probably get away with texting.

10.          A 3x5 card (or computer print-out on card-stock because you will be referring to it frequently and it will fall apart otherwise) list of the patient's pre-hospital medications and doses. It might be helpful to also write down what they're for. You will think that once you give the hospital this list on intake that they will know - but because hospitals have resisted making records electronic and because you will be seeing a parade of health care professionals, none of whom is in charge of keeping  care coordinated, you will be asked this question repeatedly.

11.          If one of the family caregiver/advocates also requires several medications a list like the one described above is also helpful. It's also important for caregiver/advocates to bring several doses of their own medication, because often you wind up staying at the hospital longer than you anticipate.

12.          Anything else the caregiver/advocate may need to keep themselves going, whether it is a Sudoku puzzle or a high-protein snack.

Medical Magical Thinking: The Salt Lie

What if salt isn't so bad for you? What if reducing your salt intake isn't good for your heart and blood pressure? What if it's actually BAD for your heart? What if people who control their salt intake are at higher risk for heart failure? What if reducing your salt intake to the levels recommended by the CDC and USDA actually puts you at a higher risk of premature death?

I love going to the movies. And for me, going to the movies means a large popcorn liberally bathed in salt. I love salty popcorn so much that you will find in each of my purses a snack-size zip lock bag with little packages of salt with the Regal logo on them so that when I get to the middle of the large popcorn I can re-salt as necessary. Over the years I've been admonished by many for my salty ways, but I have continued guilt free. In graduate school my husband Stuart studied the salt issue in a cardio-respiratory physiology class and learned that salt actually has little to do with your blood pressure, heart function or over-all health - except when your electrolytes get out of whack - i.e. when you have too little salt in your system.

I have done my best to follow the many, many salt studies since. Only one small study somewhere along the way showed that if you lowered salt intake to a level that is almost unsustainable (and not really possible outside of a clinical setting) you might, for a person or two, lower their blood pressure a point or two. I'm talking from a systolic (upper number) reading of 130 to say 128 - in only a few people - most in the study had no change in blood pressure at all. Furthermore, this small reduction was never shown to impact hypertension, heart disease or make anyone live longer. All the research since then has shown the same results - reducing salt does little to affect blood pressure. (see Gary Taube's book "Good Calories, Bad Calories" pg 146-148).

However, "in an abundance of caution" that is so prevalent in medicine - that Medical Magical Thinking - we've been hounded for decades to deny ourselves salt for very little, if any gain - just in case. Well, guess what, when you base medical advice on bad science, bad things can happen. Doctors have begun to see seniors with thyroid problems because they've restricted their salt intake so much that they're not getting enough iodine (that's why we have iodized salt!). Worse yet, research over the past few years has shown that lower salt intake puts you at greater risk of heart failure and death.

I had intended to cover this is a future blog post, but my science crush Gary Taubes beat me to it in last Sunday's NY Times. Given that he's a better writer than me - go read his article - (and please share this post or that article if someone you know is limiting their salt intake in the hopes of being healthier!)

Diving Into Peril - Guest Blogger Nate Miles-McLean

"Realistic Fiction"

As my son Nate's 5th grade class moves toward promotion (next year he'll be in middle school?!) they have had a flurry of assignments. In addition to a science report on an animal (cockatiel, of course) and a power point on the 60's (Motown) he had to write a "realistic fiction" story. A story where the the protagonist faces an enormous challenge, but triumphs. When he read me the story of his big brother's injury and recovery - told from his brother's point of view - I was stunned and really moved - especially since he wasn't even alive at the time. And I can't yet believe this is the same kid who struggled through language delays and who just a few years ago had trouble putting together two sentence paragraphs. Wow! (I've left his formatting and typos as is for authenticity)

DIVING INTO PERIL

“Mom, dad! C’mon were ready, let’s go!!” I yelled. I bet that mom was ready first; dad is really slow when he’s getting ready to go somewhere. Allow me to introduce myself; my name is Jacob Colder Thomason, Jake for short. I live with my family; me, my sister Haley, my mom (Erica), my dad(Thomas), and a little one on the way, who I want to name li’l Jimmy. Now I’m going to tell you about the time me, and my family dove into peril.
 

My story will now continue. Let’s see now, where was I… Oh yeah! “C’mon were ready, let’s go!” I yelled. Dad replied the same answer he’d been saying for fifteen minutes “Bee down in a minute!” Finally after ten hours (though my watch said five minutes) we were ready to go. We were going to a pool as miniature break to celebrate the end of school. I love to swim, so I was really excited to go and jump of the high diving board. I was so eager to get there that I complained ALLOT when I remembered that we had to pick up some of our friends to join us. When we FINALLY picked them up and when we FINALLY got there I nearly exploded that the pool was RIGHT THERE and I was still waiting to get out of the car. When I FINALLY get out of the car, I rushed to the back of the car and opened it as fast as I could. I had to muster ALL my strength to heave most of the pool equipment. Thankfully dad caught me and helped me grab the pool stuff before it all fell on the hot asphalt. After a quick “Don’t take things out of the back of the car,” kind of lecture, we got our stuff and went inside.

When we opened the big brown wooden doors, the fresh smell of chlorine, water, and wet plastic filled my nostrils. And then, as I was looking around the pool room, I saw… THE SUPERCALIFRAGILISTICEEXPIALIODOCIOUS HIGH DIVING BOARD!!!!!!! To set the mood, I swam a little before running up to mom to ask “Mom, may I go on the high dive?” After a couple seconds of thinking, mom replied “Yes you may. But be very careful ok?” I let out a sigh of relief and said “Yes mom, I will! Thank you!” As I walked towards the high dive (because running at a pool is a very foolish thing) my heart started beating harder, and harder. When I got to the ladder, it felt like that my heart started to skip beats. By the time I had gotten up to the diving board my heart was beating to a beat that no musician in the world could explain it. “Keep it together Jake.” I thought, trying to calm myself. “Mom and a whole lot of other people are watching. DON’T LOSE IT!” So I toughened up and yelled down to mom “Mom! Look at me!” So she looked up from her news paper article and replied “Ready when you are!” And I still remember that great feeling, the feeling you get when you’re facing your fear and that you will not regret the outcome of facing that fear. Well that feeling was quickly overcomed by a feeling called regret and fear. I had slipped. The last thing I remember was seeing mom and dad, running. Running like I have never seen them run before. And their faces, filled with horror and fear. And then I saw Haley. Poor Haley who could only merely watch, as her brother plummeted towards his doom. And finally came the floor, the wet, solid concrete. I closed my eyes, and everything went blank.

The next thing I know, for some apparent reason, I wake up on the ceiling of what to appears to be a hospital room. It took me a while to realize that I was looking down at my own body, with mom and dad sitting next to my bed. I looked at myself, and I looked pale, pale as a sheet of paper. I looked at my legs, they were also very pale, and I detected no movement from any part of my body, except for my stomach. Even though I knew that I was breathing, something was very unsettling to me about it. Its rhythm was random; sometimes fast, sometimes slow. And my eyes didn’t move at all, neither did my mouth. After inspecting myself the question of “What the H E DOUBLE HOCKY STICKS IS GOING ON HERE!?!?!?,” came to mind. I was still transfixed about how I was looking at myself when I’m on the ceiling, but I’m not dead. Then I realized what was happening; mom had just told me the other day that people, who were on the verge of death, would see themselves from a ceiling view, as if their sprits had left their bodies. Knowing this, I became frightened. Was I going to die? Was I going to the spirit world? If I did die, would my family kill themselves to join me in the spirit world and li’l Jimmy wouldn’t be born? As these thoughts whizzed around inside my “head,” I noticed that a descending sort of feeling that I had begun to “feel” at the pit of my “stomach.” Then I realized that I was falling very slowly back into my body. I didn’t know if this was a good thing or not, so I didn’t know what to do. But by the time I had made up my mind, I was reentering my body. A tingling feeling came over me, and everything went blank.

Once again, I woke up in the hospital room, thankfully in my old self. But mom and dad were still asleep, both in a little folding chair. It made me feel special, knowing that two people, just two could show so much love and affection towards one person. For some reason I could see two things at once, but I didn’t really care at that moment. When the doctor came in to check on me, I could roughly hear what he was saying, because for some reason my hearing had failed allot. So I “heard” this “As you sadly know, your son had just had a dramatic brain injury.” Mom cupped a hand over her mouth and managed a weak sob. The doctor paused with respect. After Mom had regained herself, the doctor continued “We and you shall do our best to regain his abilities. Even though your son looks like he’ll never be the same, but with a lot of hard work, and a lot of labor, we will be able to regain his abilities to eat, walk, talk, and as you can see, his eyes are misplaced, but we will definitely be able to rework that bug as well. And one more thing, his temper has or will change as in getting shorter.” I was absolutely terrified. My actions, my appearance, and a whole lot of other things that my body needed to survive in order to take care of its self had been damaged. To take care of me. As if dad had read my mind, he asked in a shaky voice “Will he live Dr. Krum?” Dr. Krum paused again to make sure that what he was about to say wasn’t taken too lightly or too assertive. After a long pause, he finally replied “If we work fast and hard, the abilities that he needs to survive, and other abilities that will please him will be restored. But if we don’t work fast enough…” Dr. Krum in respect did not finish his answer. After that he left the room to leave us. Mom began to cry, then dad…Then me. Mom when she looked up and saw that tear, she was absolutely flabbergasted. Two abilities had just been restored; the ability to cry, and the ability to care.

So for the next six months we were stuck in the hospital doing nothing but taking care of me, feeding me, and putting stupid flash cards in my face that didn’t make any sense to me! Finally, after the doctors had a lot of “this kid has major learning disabilities” kind of crud, mom finally stepped in and said “This is not accurate. He doesn’t know what those things are and neither does he find interest in them!” I thanked god at that moment for giving me such a great mom! “He’s more interested in this.” And she pulled out a poke’mon card and asked “Jake, is this a charmander?” I nodded my head. She gave an “I told you so” look to the doctors and continued. “Is he a fire type?” I nodded my head again. After going through a couple more poke’mon cards, she said to the doctors “see, this is what we need to be doing, tests that take interest on him.” The doctors looked absolutely flabbergasted. They had just been beaten at their own game by a mom. After the six months of hospital inspection, they said I was free to go. I had missed home a lot so I nearly exploded that the house was right there and I couldn’t do or say anything. I had to muster all my strength to make an excited cry. When my parents heard that cry they smiled at each other and said “Yes Jake, were home.”

So now instead of the doctor treatment, I got the Thomason treatment. The last two abilities that I had to regain were the ability to see correctly, and the ability to feel. First up, we had to make me see correctly. We did this by putting on a TV show, and then move me from one chair (or angle) to another. It took us a couple months to do this, but we eventually got it down. Next was the ability to feel. It took us a long time to do it. We tried tickling my feet, nothing happened. We tried blowing on my feet, nope. And just when all hope was lost, my aunt Kathy stepped in. She got a garbage bag, put a lot of cold pasta in it, and told mom and dad to try putting my feet into the pasta filled garbage bag. When they put my feet in, I didn’t feel anything at first, but after a couple seconds, I could feel the cold, wet pasta and the cold, wet plastic. I shot my legs out of the bag as soon as I could manage. After a couple more of put in put outs, mom and dad gave themselves high fives. I don’t have the time to tell you all the other abilities I had to regain, but I can say that to this day since then I have been able to take care of myself, I even have my own apartment now! And by the time Nat was seven, all of the abilities that I need to survive had been restored. I’m still not the same as I was or will I be, but at least I’m still alive, happy, and well. THE END.