Navigating the Labyrinth

Why is so much of the health care system set up for consumer failure?

My doctor referred me to see another doctor. She made an e-referral, "shared" my e- Medical records, and told me all I had to do was set up an appointment. Technology is great, I thought happily. I had no idea that I was about to enter the scheduling Twilight Zone.
Consider this sentence in a message left on my voice-mail hours after I initially called to set up an appointment:

 "Then we'll mail you a questionnaire and when you fill it out and mail it back we will review it and then call you to make an appointment. So call back and let me know if I should send it."

First of all, you'll mail a what?  I'm not taking the Pepsi Challenge. I'm going to see a doctor. Second of all, I had already called and left a message in the "scheduling" box. Which I was only allowed to do after I did an intake over the phone with someone from Registration. Clearly, I want an appointment. Send the questionnaire if that's a real thing. Why do I need to call back a third time?

Surely I had misunderstood the voice-mail.

The next day when I called I was told the questionnaire had not even been sent to me yet since they had not heard from me. I asked  why I needed to fill out a questionnaire and was told "so we can determine which practitioner you should see." At this point I reiterated that my doctor had submitted a referral for a specific doctor in their practice. "That is the practitioner I should see," I pointed out. The secretary told me I still needed to answer the questions and mail it back. There is no way to fill out the form online. I need to receive it, fill it out, mail it back, and wait for it to be reviewed before I can schedule an appointment.

This is insanity to me. In an age where robots perform surgeries,  where computers can play Jeopardy,  and where I can have ice cream delivered to my door UNTIL 4AM and pay for it with a credit card, why am I watching my mailbox? Don't they know I am rarely home? That I have two jobs? That I just ran out of stamps? Am I being referred to see Dr. Quinn, Medicine Woman? *

As I stood in the hallway at work, trying to let the anger go,  it made me think of my patients.

- If I can barely navigate this ridiculous back and forth of voice mails, phone calls and paperwork, how hard must it be for someone without a home? A phone? A voice mailbox? A mail box?   Even if a homeless man or woman has a mailing address (and many do), often it is not accessible  to them 24/7.
- Add on the fact that seeking help for anything other than acute injury is not going to be a priority for someone on the street, and you have a real barrier to compliance for appointments related to chronic life threatening problems such as diabetes, cancer and AIDs.
- Forget appointments to screen for early signs of disease, such as yearly pap smears for females or colonoscopies for people over the age of 50.
- Plus, when I finally get an appointment I am likely to write it down somewhere, be able to take a (paid) day off from my job and I will drive my car to see the doctor. A homeless man or woman is likely to forget the appointment, or just blow it off due to lack of transportation or the need to be somewhere else at that time  (taking care of an infant, standing in line for a bed or food) or in some sad cases, abusing substances to mask physical or emotional pain).

That's why Healthcare For the Homeless programs are so important nation-wide. It's not about cheaper access to services or free care. It's about access to services at all. It's about organizations that can offer rides to the disabled war veterans to get to appointments, or who will help an illiterate woman  fill out pages and pages of complicated forms in order to get social security benefits. It's about teams of people who will meet with folks who have been through too much trauma to deal with the type of rejection sometimes faced by patients waiting for care. Just think, I've had to call this woman's office three times so far since my PCP made the referral for me. People with mental health issues, social phobias and histories of being abused probably would not have made the second call, if they made the first one at all.

So as I continue to try to get in touch with Dr. Mike** I am thankful for the structures in place in my life that I often take for granted that will assist in me eventually getting an appointment. And I vow, not for the first time, to do my best every day to address every patient issue that I can, or to put the patient in direct touch with someone who can help them. It can't always happen. Things get busy. Patients get blown off. Especially ones with minor complaints. We triage, we prioritize. But I can try my best.
Because unless I create the care I wish to receive, the system is going to stay broken.

In the meantime, Nurse Sassy Lionheart suggested I just get on my horse and gallop the questionnaire back to the office. You know, to speed things up.

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* Gosh I hope so. And I hope Sully is there. mmmm.. Joe Lando circa 1996.. That helps. No more anger. Only wild and free "courtship feelings." ****
**  Not her real name, obv, but I am assuming she, like the real Dr. Mike, will be bold, outspoken and have all kind of new ideas she learned at the Women's Medical College of Pennsylvania.***
*** If not, this was so not worth it.
**** No disrespect, of course, to Joe Lando's current wife and children. I am glad it worked out for you all.

Housing for Labor

My role as a provider of health services to homeless men and women does not end the cycle of homelessness. My mission is to provide the best quality health care I can offer to people during a vulnerable time in their lives, whether their non-housed status is chronic or temporary.

Still, my hope for all of my patients is for them to attain safe, stable housing situations. Housing is a huge part of homeless healthcare.

There are many different reasons people become displaced or homeless. Which is why there is no good, solve-all resolution for the problem. But there may be a few approaches that will work on large pockets of homelessness in the US.

An interesting article came my way via Twitter yesterday from the National Coalition for the Homeless.

The full article can be found here. In case you don't have time to read it I'll sum it all up:
In San Jose, there is a community of otherwise homeless people who live intermittently in a tent city near Coyote Creek. They are often asked to clear out. The city organizes a clean up effort (for example, in conjunction with the county jail). Then... they move back in.
But if the US Environmental Protection Agency funds a grant proposed by the city's Environmental Services Department, the Santa Clara Valley Water District and a non profit called Destination: Home, then the creek dwellers may be able to do the clean up work themselves this time, earning housing and job training in the process.
Since my visit to St. Mungo's Nightingale House in London last spring, I have often thought about how important job training and social services are for ending the cycle of homelessness.

The Downtown Streets team, mentioned in the article, has used a similar model to get men and women off the streets of Gilroy, Palo Alto and Daytona Beach in Florida.

Again, because homelessness has so many different causes, the same treatment isn't going to work for all of them. What about elders who can not work? Those who are homeless due to illness or physical disabilities?

Both Richardson and Liccardo say they are fully aware that the program will not end the problem of chronic homelessness, especially for the severely drug addicted and mentally ill.

"We don't pretend that we can save everyone,'' Liccardo said. "But this could be an effective tool in the toolbox."

And I think this is an important thing to note. It's easy to reject ideas because we can see that they don't hold the entire solution within their limits. But when a problem is as multifaceted as homelessness... an entire toolbox full of approaches is going to be absolutely necessary.

Well done, San Jose!

One Year Later

Friday night at 6pm at John Hancock Hall in Boston there will be an event commemorating the one year anniversary for those who lost their lives in the earthquake in Port-Au -Prince.

If you can not attend in person you may want to consider joining in the event through the the web cast.

For more information check out  the Partners In Health, Stand With Haiti website.

... only thirty two

Here is a video that was made about BHCHP.
 It has a lot of focus on the building I work, and features a ton of my coworkers and patients.
And the song throughout it, which is an original piece by a patient... well, you'll just have to listen for yourself.


I love my job.

Hope and Hope and Hope

All I want is healthcare and equal rights for everyone.

Today one of my coworkers pointed out that there's something very interesting about the result of last night's special senate election. Something almost inspiring. Brown deserves credit for running a much more successful campaign and for being the head of a small movement that made big waves. I have to give Massachusetts credit for voting for change. I was big on Change in 2008. I urged people to forget party lines and vote with their heads and their hope.
So I can't begrudge others the same mind set. I expressed this thought aloud at work.

"I can," piped up another nurse bitterly, eliciting scattered laughter. Everyone here seems to think healthcare reform died last night. It's a very somber day here. But I'm not giving up.

All I want is healthcare and equal rights for everyone.

I'm not giving up hope for those things, no matter what. I will continue to be a voice for those who don't have one. Brown, as he pointed out last night, is "everyone's" senator. Although that's already becoming a joke in my own household --

"Maybe you could rent a truck from home depot to go get the mattress."

"Maybe I'll just call Scott Brown."

he represents all of us, whether you picked him or not. Maybe this just means we're going to have to stop assuming our representatives know what we want and start telling them.

Brown could end up being a swing vote, after all. This may be an outcome far more in line with the way our government was intended to work.

I am being perhaps a bit naive, imagining that the GOP might not use Brown to block attempts at healthcare reform. Or more to the point that he might break from his party and they won't be able to. But I have hope, hope the size of mountains, that says maybe this won't be the end of progress on the reform front.

Government is imperfect. For someone like me politics are specifically tricky. As a "liberal" Catholic, or "religious" Democrat there are few things that actually please me. My faith isn't in government, it's in God. If I sound like I'm excusing myself from the entire democratic process, I don't mean to. I read, I vote and I yearn for progress. But I do so knowing that it's a never ending process. There will not be a day when everything falls into place and we can just stop hungering for a more perfect world. Not here anyway, and not because of anything we come up with ourselves.

All I want is healthcare and equal rights for everyone. I see no reason to declare those desires more impossible today than they were two days ago. Maybe less possible,

(because, yes, I understand what a filibuster-proof majority could have accomplished), but still not impossible. It may be splitting hairs, but what else am I going to use this tiny axe for?*

Because I could talk about this at great length but would rather move on to talking about Haiti, homelessness, my friend Pim, and videos of my favorite songs, I would like to offer my last thought on the subject for today.

We can only address the problems in our world one step at a time. The Massachusetts special senate elections results may appear to be a set back to some people, and a victory to others right now. But the future will hold many more opportunities for all of us to continue to stand up for what we believe in, one day at a time. Because that's what makes this country worth living in.

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* get it? Because I'm so tiny, my axe must be tiny too. Oh, forget it.

Medical volunteering in Haiti

Partners in Health (PIH), and Doctors without Borders (MFS) both have medical personnel ready to deploy at a moment's notice for disaster response.

I am not part of any agency that would have sent members to Haiti during this time. But it's not surprising to have heard several people from various local public service roles wonder if there is something they can do that's more active than sending money.

The more I settle into my identity as "nurse," the harder it is to not imagine myself responding in person to emergencies of this magnitude.

I have since been convinced that the most useful thing any of us can do is send money right now.

However, as Deval Patrick mentioned at the meeting on Wednesday night, a time may come when more volunteers are recruited for various relief efforts in Haiti.

For any of you who may be interested in that you can contact Richard Chacon, Director of the Office for Refugees and Immigrants, through Deval Patrick's office at 617. 725. 4000.

You can also call the Massachusetts Emergency Management Agency at any time by dialing 211.

As always, it's a number you can call to get critical information about human and health services (like "where can I bring this confused old lady I just found?") or to obtain information during a disaster or public emergency.

You can use this service to inquire about smaller groups being organized for relief work (if and when that phase of response comes about).

Until then please send all the money and prayers you have.

..if you just smile

Tom's of Maine is one of my favorite companies because I have loved their products for years and I love their commitment to community. As many of you may already know from talking to me or browsing through Facebook, right now Tom's is getting ready to grant five different clinics a $20,000 sponsorship. And they have decided to let communities vote to determine the recipients.

You can go onto their website every day from now until March 12th and vote for up to five different clinics.

Annnd... (here's where I come in) the dental clinic of Boston Healthcare for the Homeless is one of the clinics in the running. Specifically, they are being considered for their initiative to create more support for HIV/AIDS and Diabetic patients.

BHCHP has been targeting the oral health of homeless men, women and children since 1985.

As of right now they have two locations (Pine Street and Jean Yawkey Place) where our patient population can easily access comprehensive dental services from cleanings to denture fittings.

If our dental clinic is awarded the sponsorship they'll be able to hire a new dental assistant who will be specifically working to provide fluoride treatments and oral hygiene education to patients with HIV, AIDS, and diabetes who are at risk for serious health complications otherwise.

This paradigm shift towards primary preventative healthcare would be huge in stopping very avoidable oral health issues from snowballing into major medical problems.

Please. Please. Please. Take the time to go vote for BHCHP. And maybe a couple other clinics whose ideas you like, too. And remember you can vote every day, for up to five different places.

This kind of financial support in the hands of the dedicated programs listed on the Tom's website can only lead to good things happening for quality, accessible care.

Flu Prevention Video

Last spring I was approached by some folks at Boston Healthcare for the Homeless for some creative assistance. They wanted to make an educational video clip, short enough to be looped, to use in clinic waiting rooms. So this is the video we came up with.
The clip features the music of Stroamata, and the acting talents of some of BHCHP staff and clients.

Healthcare on the Brain

On 8/31 cuts were made to Commonwealth Care causing 31,000 legal immigrants to lose health care coverage.
On October 1st they will be enrolled in CeltiCare, but in the meantime they are being covered by Health Safety Net.

The problem is that there is a myriad of services not covered by Health Safety Net including outpatient non-urgent services. Which means chemotherapy, dialysis, and other important therapies can not be paid for. In many cases, this will mean termination of therapies until Oct. 1.

Fortunately for the percentage of my patients that these changes effect, they have someone to go to bat for them. Administrators at BHCHP are willing to work with the Office of Medicaid and Commonwealth Care to try to cover treatments on a case by case basis until the transition period is over.

Hopefully they will be successful. It's one more reason why I love where I work, the fact that people are consistently ready to go above and beyond to advocate for every person's right to health care.

I worry about the people who don't have anyone to advocate for them. The young, or elderly or non English speaking or mentally impaired legal immigrants who are not part of our system. I hope their doctors are also speaking up for them. Everyone has a right to the care that they need.

And without getting any more political, that's all I have to say about that.

Mental Health Rant

The more I thought about the Goldfarb the more upset I became. Watching the video over and over didn't help.

Many people who believe they do not have issues with mental health (whether they do or not is another story) consistently downplay the significance of mental illness in our society. This attitude is not often actually put into words by educated people. No one who knows better says "They should snap out of it" or "It's their own fault anyway." But we feel that way sometimes anyway.

I work with people with mental illness every day. Still with all my experience, exposure and education I sometimes catch myself transmitting the message "Why can't you just knock it off?" and even when it's not directed right at the patient (maybe it's in a venting session with a co worker) it's always a harmful stance to take. It perpetuates a myth that all people are always in control of how they behave. They are not*.

Shutting down funding for Mental Health programs is like ignoring that people have arms.
("Hello, we are a hospital that only treats anything NOT having to do directly or indirectly with your arms.")
So is the practice of insurance companies denying authorization for mental health services.
("This insurance policy does NOT cover your arms. Sign on the line.")
What would you think if you went to a country where that was the case? You'd probably come to the conclusion that arms are not valued. They are considered expendable. People in that country for some reason just really don't need to worry about arms. For some people, it's because they have never had problems with their arms. So there'd be a lot of fine, two armed people. But then there'd be a ton of people with one or no arms just from minor injuries like broken fingers or infected lacerations.
Denying mental health services sends the message that this entire branch of medicine is less legitimate or important than others.

This is a dangerous message for health care companies and the state government to send because American society in general these days already sends very mixed messages about mental health. On one hand, we are more educated and comfortable about mental health than ever. Characters on popular TV shows have therapists, women are no longer diagnosed with 'hysteria,' when they cry, and men are encouraged to share their feelings with their wives**. On the other hand, women and men alike are feeling the pressure to save face. Think about how much the media harped on Hilary for crying when her polls were down. No one wants to see you break down when times are tough. People are expected to power through and write a book about it, produce some angry music, or create a stand up routine. Anything less is unacceptable. And yet... Oprah continues to have a tv show.

Depression, personality disorders, mood disorders, it's all neurological. It's physiological. It's very, very real. Whether the help is medication or therapy or a group or a program help is needed.
Providing mental health services is imperative for successful preventative health care. People who feel safe and happy drink less, smoke less, do fewer drugs, commit fewer crimes, and reach higher levels of self actualization. To go back to the arm analogy, what do you think will happen to all those people with disabled or missing arms? They will have to be supported even more by the people who do have arms.

I know you can't fix this. You can't re open the Goldfarb. And the money is just not there. But please try to be aware of how you view mental health. Our minds are amazing. I love my brain. If you are blessed with one that works well for your purposes please don't pollute it with bias against minds that need some help. And maybe do some thinking about how to fix these problems.

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* If you want to fight me on this I will probably ask you to meet me at 10 Shattuck Street in Boston. We can stand next to the preserved skull of Phineas Gage and have it out.
** Ugh. Ugh. Ugh. I apologize to my queer readers for this incredibly hetero sentence, but my writing is limited by my scope of experience. I would definitely welcome some guest writing on the subject of Mental Health in the Queer Community if you have some thoughts to share.

Scary Wagers

The recent Hib break out has everyone all up in arms. Mainly because out of the five cases there was one death. And the death was not a child too young to be vaccinated, but a child whose parents deliberately did not vaccinate. It's a kind of Holy War, these vaccine arguments because those who believe in the shots firmly believe they are saving their kids. But those who have reasons against it believe just as firmly that they are doing the same thing.

Parents chose to not vaccinate their children for many reasons. Religion is obviously on the list. Especially religions like Christian Scientists*. But religion aside, there are still a ton of parents who are opposed. Many parents fear the toxins used as preservatives in the vaccines, some of which have been loosely linked to the development of diseases such as autism, Multiple Sclerosis and other genetic, autoimmune or neurological conditions which have increased in prevalence since the introduction of so many new vaccines.

Or else they fear that the manner in which vaccines are prepared (generally in a blood broth from an animal like a pig or a horse or a monkey) is not safe. People have even questioned if this is the cause of some cancers. Not far fetched at all. In fact, the polio vaccine in the 1950s was largely contaminated with the cancer virus SV40. The FDA does not regulate the purity of the bio-materials vaccines are grown in. That is something left up to the drug manufacturers. That blood might not be clean. But it might be! But maybe not!

The reasons to vaccinate your children are largely to protect them from horrible and untimely deaths from preventable illnesses. In addition, vaccinating your own child helps to build up herd immunity. The concept of herd immunity is simple: if almost everyone in a community is immune to a disease, the disease will not infiltrate and harm those who are not immune (let's say, the 1% religious folks, and fetuses and infants too young to get the vaccines). Therefore some children of anti-vaccine parents enjoy protection just by living as a minority among those who have received a vaccine.
It is also true however that in the case of vaccines which involve the injection of a live attenuated virus - MMR and also the TB vaccine), that newly vaccinated members of the "herd," can actually pass the disease along to the unprotected in the days before the virus is killed off. The unprotected will either A) get very sick and possibly die or B) develop a passive immunity that is undetected because their immune system took care of the job on its own.

The benefits of having most of the population vaccinated are clear, however the risks seem great. Although I chided my friend Ayla for days about not vaccinating my godson, just one look at the site Think Twice shut me up for a while. Although no nationally recognized studies link Autism to the MMR vaccine, story after story of families turned upside down after a child receives one of these shots become hard to ignore. One of the greatest and most published case for a link between MMR and autism to this day is of course Hannah Poling.

The official stance of the Center for Disease Control, the FDA, and the American Academy of Pediatrics is that the MMR vaccine does not cause autism. They have studies that you can download and read online. The Institute of Medicine published this safety review. The CDC is quite sure that the Hep B vac doesn't cause MS, and would like you to be sure as well.

I feel like the number of immunizations children receive today is too high. I do not think babies in developed countries need Hep B vaccines, for example, unless the mother has Hep.
However, I also think that vaccination technology has come a long way, and several vaccines are absolutely necessary. But why stop where we are? I demand more regulation instated for vaccine preparation. Why isn't anyone testing the carcinogenic potential of sheep agar? Why isn't anyone searching for an alternative to thimerosal??
I'm irrationally angered by the lack of consensus surrounding this issue. I like my medical issues to be resolved by hard facts. But the hard facts don't appease me here because the data is as fuzzy as an ethical dilemma, not scientific at all. It says, yes some children developed autism after this shot, but they were outliers and so we are not even entertaining the link. It says, although mercury poisoning is rare you are a bad mother if you vaccinate your child because you know you're doing him harm. It's better to count on herd immunity to protect him from a meningitis that may take his life than to knowingly give him what may become cancer.

It says you're damned if you do and damned if you don't.

My heart goes out to the families effected by the Hib outbreak. Your choice to not immunize cost the life of a child. But I see how a choice the other way could have done the same.
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* and Jehovah's Witnesses but only until the late 1940s when someone (I forget his name) made the decision that possibly receiving a bit of pig blood in a shot is not the same as drinking blood, and therefore not against Scripture. Just in time for Polio. Phew!

Gum ,Your Bowels and Society

I once had a patient with severe constipation. Passing flatus, normoactive bowel sounds. But just couldn't go. One of the M.D's at that particular facility told me that he had recently read a study that linked gum chewing to bowel motility, and he even gave me a copy. Apparently it's not exactly novel research because several journals, especially surgical, onco, and GU focused journals have published similar findings.

Because of that I still sometimes write, "encourage gum chewing as appropriate to stimulate bowel motility" in the A/P section of applicable SOAP notes, especially for new post- op patients.

Then I sit and wonder why anyone lets me have a grown-up job.

In all seriousness though, it has been really helpful to several of my patients, and it is evidence based practice, so it's a legitimate plan. I mean, especially in conjunction with something like, "push fluids p.o and encourage prn laxatives as needed." But I just really, really love non pharmacological interventions that have measurable physiological responses. Hot packs and ice, ambulation, pursed lip breathing, weight bearing activity, elevation, relaxation techniques, massage, acupuncture, incentive spirometer use ... I love it all. Medications are very important. And nothing can take the place of getting the proper dose at the correct times (via the correct route!) But when you can add behaviors or actions to create a definable and qualitative increase in quality of health, I think it's even better.

So much can be done just by altering one's lifestyle. Changing diet. Changing exercise habits. In mild cases diabetes can be almost completely managed that way. So can hypertension.

So much can be prevented with life style modifications. But as a society not only are we all about pharmaceuticals but we're also not so much into primary intervention. We'd rather do the damage now and pay for it later.
The exception seem to be middle class 20 somethings who are into being non smokers, doing yoga, shopping at Trader Joe's and going to the gym. (So... Cambridge, MA.) But for the majority of Americans either lack of education or lack of resources or just plain laziness stand in the way of life styles that could prevent major problems down the road. Meanwhile our current health care system is mainly controlled by the Pharm Industry which means that no one at the top has any major incentive to change that.

And so I will continue to include things in my care plans like ginger ale for nausea, elevation for edema, and ambulating ad lib to prevent pneumonia post op. And finding the research to back it up. At least now you know that if you're having trouble with your bowel movements you can go grab a stick of gum. It tastes better than cod liver oil and is cheaper anyway.

scapel, clamp, sponge, farts

I love my stethoscope. It's a simple classic Littmann, and was a gift from my college roommate Jen for getting into the School of Nursing. I love the new RN computerized charting system. Oh! And I am a huge fan of the mini portable 02 sat reader because it's so handy to bring into patient rooms. But my favorite thing at work right now is The Fart Machine.

One of the nurse practitioners set up in the work room one day last week. She kept hitting the remote and amazingly realistic noises began to fill the air. She let me borrow the fart machine to use all day on the floor. The results were amazing. I made grumpy co workers smile. I made friends with a respite aide who I work with often but rarely speak to, and I got laughs from housekeeping staff who don't speak the same language as I do. Just as in Tokyo, some humor doesn't need language. Like fart humor.

Clinically speaking the results were even more significant. I used the machine wisely. For example, I didn't use it when I was with my patient with extreme paranoid schizophrenia because I know it would have agitated her quite badly. But I made the most out of every appropriate opportunity.

For example, I worked with a new admission who hated needles but needed a flu shot because she's so high risk. As I prepped the injection she was very jumpy, unable to sit still. I took my time as I got everything ready and hit the button in my pocket as I approached her. She made eye contact with the NP in the room, who shrugged at her. I hit the button again and her jaw dropped but she recovered quickly. As I swabbed her arm with the alochol pad I hit it a third time, and she couldn't be polite any longer and asked, "Are you farting?" I responded by saying, "sorry, rough breakfast," and letting out five more honks, which sent her over the edge. I showed her the button she was so amused and distracted that when I said, "here we go," she held out her arm and I stuck her with no problems at all.

I made a ton of patients laugh the first day with the machine, but my favorite was this woman who has a terminal diagnosis and is here for some real respite care. She is in almost constant pain despite her long list of pain medications, and rarely leaves her bed. I bent over in her room to pick up a cup and hit the button. She jumped. I excused myself, and she told me it was alright. It happened again and I grabbed onto the bed and she asked if I was ok. But then I just kept pushing the button, contorting my face each time until she was screaming with laughter. Tears rolled down her face, and she got out of bed and followed me down the hallway telling people, "listen, my nurse has broccoli for breakfast! Listen!" She told me I made her day.

And that is why The Fart Machine is my favorite new clinical tool.