Putting the Hospitable Back in Hospitals
I was trying to figure out where I could go to get away from what the doctor was telling me. I wondered why he hadn’t taken me to a private room to give me such devastating news. Dan only had a 2% chance of living; they weren’t going to perform liver transplant surgery with those odds, he said. The words 2% were the equivalent of a death sentence, but he spoke them as though he were giving me the fat content of a carton of milk. ~ excerpt from A Box of Kleenex, HERE.
The word “hospital” is related to “hospice” and “hospitality,” all words that might conjure thoughts of “guest,” “care,” and “death.” For me, death is what I associate most with hospitals. Even though both my sons were born in hospitals, it’s the hospital deaths I’ve experienced that stand out the most. Because of them I became intimate with hospital settings, after spending many days in patient rooms and waiting rooms in an altered, yet heighten state of awareness.
In 2001, my brother Dan was desperately in need of a new liver. First, he was deemed too healthy to be a priority on the liver transplant waiting list. Then, when he took a sharp turn for the worst and was hospitalized, he was determined to be too sick to withstand the surgery. I remember the doctor discussing dialysis after Danny’s kidneys shut down. “It’s like putting new brakes in a car when you really need a new transmission,” he said.
Spending the last few weeks of his life in the hospital, Dan endured many painful procedures and interventions. The interventions might have given me and my family more time to get used to the idea that he was dying, but they also could have weakened him to the point of accelerating his death. He had two liver doctors, a kidney doctor, a lung doctor, a stomach doctor, a pain management team, a physical therapist, and an occasional surgeon taking care of different body parts, but no doctor oversaw the person Dan was, except for the priest, but he was more interested in Dan’s soul.
When my eighty-one year old father was hospitalized four years later after a car accident, he initially seemed fine. Later, an X-ray would show a fracture in his neck vertebrae. Even though it was never determined if it was an old fracture, a result of the accident, stable or not, doctors decided he would need to stay in the hospital and wear a neck brace as a safety measure.
My dad’s worst nightmare started when he was given Haldol – a powerful antipsychotic drug, sometimes used as a chemical restraint – for agitation. The Haldol led to heart irregularities, which led to more drugs. He eventually contracted pneumonia, as a direct result of hospital interventions. After being bedridden for five weeks, and surviving in spite of it, he was helped out of bed for a wheelchair ride, given by my sister, Sherry, on what turned out to be the last day of his life. Nobody was able to tell us what caused his death that evening, but I suspect a blood clot, created from being immobilized for so long, stopped his heart.
What the hospital staff didn’t know when they treated my dad for agitation was that my mother regularly read him horror stories out loud about people dying in hospitals from medical errors and secondary infections. Yes, he was agitated; he wanted out of the hospital in the worst way.
Some popular treatments create symptoms worse than those of the illness they are treating. The side effects from one drug can lead to another drug being prescribed, bringing on even more troubling side effects. One could argue that drugs don’t cure illnesses but that they only suppress symptoms. Some drugs have a rebound effect, which means that they eventually bring about the very symptoms they are treating. Others are prescribed only to be recalled later when it has been determined that they have killed people.
A well known 1999 study shocked the country with its findings when it was announced that hospital errors kill 195,000 people each year. A few years later another study found that about two million infections are acquired in U.S. hospitals each year, killing about 90,000 patients yearly. More recently it was reported that deaths from adverse reactions to prescription drugs have more than doubled in last ten years. Last week we were told that the cough medicines, linked with the deaths of some young children, are not only risky but that they aren’t even effective treatments.
So why do so many of us still religiously trust modern medicine? Why doesn’t my insurance company cover the alternative treatments that have proven helpful to me? Why are parents sometimes forced by courts to use standard medical practices when the record is so bad? The Institute of Health, National Academy of Sciences, which reported the number of deaths by medical errors in 1999, said that those deaths exceeded the number of those due to motor vehicle accidents, breast cancer, and AIDS. Considering that, and the latest alarming findings, is it any wonder that a number of Americans refuse that flu shot that still contains mercury?
Years ago women pushed for family-centered birth practices that wouldn’t pathologize birth. As some were moving towards midwife assisted homebirth options, birthing centers sprung up throughout the country in response. At the same time, families and health care practitioners were advocating for more family-centered and humane deaths, and the hospice movement was born. But what about everything that exists between birth and death? Could we resist the urge to pathologize health care?
Dr Robert Mendelsohn, author of Confessions of a Medical Heretic, has made the statement, “I believe that more than ninety percent of Modern Medicine could disappear from the face of the earth – doctors, hospitals, drugs, and equipment – and the effect on our health would be immediate and beneficial.” I agree that we’d be better off returning to simple remedies, using the handful of drugs that have proven themselves over time, and letting nature take its course when appropriate. For all our drugs and medical procedures, we don’t seem any healthier, or at the very least, we seem to have traded the plague and polio for diabetes, cancer, AIDS, and autism.
In Medelsohn’s book, first copyrighted in 1979, in a chapter titled “If This is Preventive Medicine, I’ll Take My Chances with Disease,” he discusses the risk of childhood vaccinations, all three of them. Now there are twelve childhood vaccines that the CDC recommends and that most schools require, with more being developed every day. It worries me that because some vaccines are administered more than once, most children have received twenty-three vaccines by the time they are two years old. And why has it been left up to parents to fight for safer vaccines? Why are they expected prove a link between vaccines and autism, or other adverse reactions? Shouldn’t it be up to the makers of vaccines to prove they are safe?
I do appreciate the care given by individuals in the health care field and the success stories of modern medicine. But I believe, on the whole, the system is unacceptably flawed, to the point where being in the hospital is like playing Russian roulette and following a doctor’s every order has the potential of making us guinea pigs for pharmaceutical company profits.
Post notes: The following thoughts have been brewing in me for a long time, but I found myself avoiding the enormity of such a complicated subject. I was hoping the Sunday Scribblings writing prompt would be one about umbrellas, since I have some great photos of me with my purple one out in yesterday’s rain. But the prompt was “hospital,” and it acted as nudge, causing these words to finally converge.
October 27th, 2007 6:11 pm
I had a huge answer here, I’ll but it on my own blog after some thought. I do essentially, substantially, agree with you. I am so sorry you had such bad, coercive experiences.
October 27th, 2007 6:23 pm
Zhoen, I thought of you as I was writing this, knowing that you, like my sister, sister-in-law, daughter-in-law,and many of the nurses involved in my brother an my father’s care, give so much of yourself trying to do the best for others.
October 27th, 2007 7:47 pm
This is indeed an enormous topic. I find myself at a loss for words to comment.
October 27th, 2007 8:51 pm
as i read thru the various entries today i cannot help but feel blessed that i am yet to suffer from any such malady or family strife… i hope you have seen the last of yours….
October 27th, 2007 8:55 pm
Yikes. Super scary stuff. I’m so sorry for your experiences. I feel very lucky not to have suffered similar ones YET but can’t help but always fear they lay in the future — for all of us. Very well-written and moving post.
October 27th, 2007 9:37 pm
The health care crisis in this country seems symptomatic of so many of our problems. The increasing emphasis on the bottom line and profits has drained us of our collective sense of purpose or humanity. Preventive care and alternative medicine are threats to the status quo, even if they can save lives and expenses. The sheer enormity of it all makes any sane person consider moving to Canada.
I’m very sorry for all the suffering you and your family have been through. Thank you for this post. It should be mandatory reading for all the apologists of the current system you continue to keep their heads in the sand while counting their cash.
October 27th, 2007 10:51 pm
I have been sitting here reading your blog for over an hour now and was completely lost in it. You write so beautifully and it seems that we’ve shared many of the same types of experiences. (And you were born in 1951? :-)I would ask you to come and visit me at my blog, but it’s been down today and I’m not sure when my web guy will be able to get it back up.
However, I don’t want to wait to give you a hat tip because I know how nice it is to hear from new friends.
Thanks!
October 27th, 2007 11:49 pm
Colleen,
You share important information here. I agree with all you have put forth. As a Nurse anesthetist for the past 37 years I’ve seen medical intervention make things worse rather than better. Sometimes pts. get better in spite of medical care, but sometimes they get worse and die.
I always say; “i’m afraid to go to a doctor because they feel obligated to find something wrong with you and then they try to fix it.”
rel
October 28th, 2007 1:16 am
Sorry your hospital experiences have been so horrendous. Mine have been about 50/50. And I, too, wonder when new meds will not be prescribed at any sign of discomfort and when people will feel strong enough to help their bodies help themselves. A nicely written post.
October 28th, 2007 7:26 am
Well said, Colleen. I’m so sorry you and your family have had to endure so many difficulties. The health care industry in this country is broken and has lost its soul. And the health insurance business is shameful in the way it rakes in the profits and puts those profits above the well-being of people.
October 28th, 2007 8:20 am
I couldn’t agree more. My own observations have convinced me for some time that the Medical Establishment kills many more people than it helps. The identified 195,000 victims are just the tip of the iceberg. It angers me that many of the current presidential candidates, including the one most likely to get elected, are proposing to force everyone to purchase “health” insurance, which will be another backbreaking tax on the working poor, and ensnare more and more people in this deadly system.
October 28th, 2007 10:09 am
Thank you, Colleen. Sincerely. This was a terrific piece and as you know I identified with it on some level.
October 28th, 2007 11:49 am
I have over 58,000 dollars in unsuccessful surgeries. No home after care. I educate my self and am a naturalist. I did not realize I did a medical post today too the other kind. didn’t realize until I read this. I have I’m sorry to say become very suspicious throughout my disease, and I hate to say it …a lot of collect my check and that’s all.My favorite story is a head nurse who everyday would tell me in an emphatic way not to drink…. and every day I would tell her my throat was gone. Mind boggling ..
October 28th, 2007 1:23 pm
My dad who never had any liver complications, passed away due to liver infection. All of us know that it must have come from blood ttransfusion. The hospital goofed up and my dad was gone. I did not mention this on my post becos, I can feel that helpless rage thinking about it.
Your post is true for health care all around the world.
October 28th, 2007 3:42 pm
I can’t speak for other countries, but most Americans are so trained to think of medicine as being a science and expect medical people to DO something, anything. In return, most medical personnel are trained to DO something, anything, when presented with patients.
I have been lucky enough to find a primary care physician who is willing to work with me when I am hurting, and doesn’t insist on DO-ing something just because she can.
You have given us a lot to think about in this piece.
October 28th, 2007 6:59 pm
I had a fit when Caleb, the first one, was born and they made him take the hepatitis vaccine. Have you seen the numbers on that one and the deaths or permanent damage it can do? And now this cervical vaccine for young girls. I don’t like it at all. If she doesn’t have sex in her early teens she will not be at very much risk. I agree that things need to change and that insurance should cover remedies that are not modern medicine.
October 28th, 2007 8:45 pm
An absolutely stunning essay. The truth you shout should be heard by everyone.
October 28th, 2007 10:39 pm
I’m sorry to hear about your terrible episodes with hospitals. Thanks for sharing this moving piece. I just hope people who work in hospitals will read it.
October 28th, 2007 11:35 pm
Hi,
This is such a powerful post, Colleen. I am so sorry you have faced such traumatic events and realize many whom we will never hear from have horror stories they, too, could share. I also know that as much as we would like it to be a perfect science, medicine never will be. Many mistakes are made which could be avoided, however, and many errors in judgment cause irrepairable damage. I am reminded of those who have lost the wrong limbs during surgery, the 2 male infants in Atlanta (20+ years ago) who were circumsized shortly after birth with a faulty medical device which so severly damaged their penises the parents had to decide if they wanted to have their male infants transgendered (they did). So many stories.
On the other hand this year I faced the medical crisis of my life…a staging of abnormal uterine cells so atypical my pathology sampling indicated it was one stage away from invasive carcinoma. A radical hysterectomy was the preferred method of treatment, but my oncologist and I agreed that this was not in my best interest at the moment. I chose a less radical course of treatment, one we hoped would reverse the atypical hyperplasia cells. The medication I was given did just that, and now I am sitting here writing this with my uterus intact, no abnormality, with plans for medical follow-up for the next few years to confirm this continues. At this point in my life I have to say, “Ain’t medicine grand?” Sometimes it saves lives, sometimes it makes our lives more bearable, and sometimes it really screws us up. Doctors and patients make the decisions; none are perfect. It is all a grab-bag, I suppose.
Nothing is more important that preventitive care, and insurance companies should be thrilled to pay for any treatment which could help a client avoid becoming a patient! Being proactively involved in our health care by being a partner in the decision making with our physicians, doing research and learning more about our bodies and good health are the best options we have. My parents will never do any of the above, however. My father (a total control freak) will not permit anyone else to assist him with this either, so they are at the mercy of any doctor who cares for them. Many are. Scary and sad. 🙁
October 29th, 2007 8:09 am
man… could i go off on a rant on this one. i have a very dear friend, a young mother my age who tried for a year to get doctors to listen to her that something was terribly wrong with her body. but no-one did anything until she was on the verge of death due to colon cancer. if she hadn’t advocated for herself and been insistant, she would probably be dead.
i don’t know what the solution is, but something’s gotta give…..
i DO have to say that the only time i’ve had to stay in the hospital was when i gave birth to my son, and the nurses were wonderful. i didn’t want to go home b/c they took care of me so well. 🙂
October 29th, 2007 8:52 am
For sure, overtreatment, the default of doctors taking the easier path of giving in to patients who demanded for year just give me something so would assume that what they can give would have limited effects, placebo being the greater outcomes, I think that’s a factor. Now that patients can refuse medicine and must be heard in that regard, and educating themselves, that’s starting to swing. This TED talk might have somethings of interest of design, particularly the one-handed device for nurses…http://www.ted.com/index.php/talks/view/id/43
October 29th, 2007 12:06 pm
Excellent writing on a topic that not only touches close to home, but for many, IS at home.
I love your crispy clear thinking and your sittin-across-from-you-in-the-living-room delivery.
It’s always like a visit to a friend when I come here.
Sorry you and yours have endured so much.
October 29th, 2007 2:10 pm
Thanks, Weary, and thanks to everyone who contributed such meaningful comments to this ongoing dialogue. I appreciate them all.
October 29th, 2007 9:36 pm
Hospitals are very scary for me, having spent 3 months in one when I was 13, with diabetes that was diagnosed way too late. I was in a coma for a few days. I guess I can be grateful there was a drug for me to take to let me live another 40 years but it’s a double-edged sword. I have so many other things wrong with me now as a result of diabetes, I dread having to go in the hospital for anything.
October 30th, 2007 5:08 pm
Sigh, this is all to real to me. Thank you for what it took out of you to write it. I understand.
October 31st, 2007 10:45 am
~~ Talk to me about Hospitals…The Husband & I are now looking for another home, because the bill I have from the Hosp. is one that I can only pay with less than $100.00 per month. Naturally the Corporation running the Hosp. wants MORE..I don’t have it & they can literally take our home away ~~ Now it’s time to clean & paint another room, and go look at properties again this weekend…