Responses to “Patient As Doctor”

The many, varied responses to my report on my recent hospitalization, “Patient As Doctor,” including numerous shares and likes on Facebook, were very helpful. Those comments that resonated with my critique of the health care system as a reflection of the larger society reassured me I am not alone. And the empathy and sympathy that were expressed was healing.

At the same time, however, I appreciated those who offered a different perspective. Generalizations are dangerous. Reality is a mixed bag. It does seem, for example, that Kaiser Permanente, “an integrated managed care consortium,” generally offers better care than is provided by “fee-for-service” institutions that generate greater income by providing more, often unnecessary, services, as is the case at my hospital. And no doubt many people receive good care at that hospital as well.

All of which raises questions about strategic language. If one is not careful, overblown rhetoric can alienate one from one’s audience, making it more difficult to build pressure for positive change. Words matter. What should we seek? Evolution? Revolution? Fundamental reform? Transformation? Creative change? It gets complicated, but those are questions I’ll continue to explore.

In the meantime, here are the responses to my piece, which I posted on multiple platforms:

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Holistic, consultative democratic practices

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So sorry about your experience. What you describe is why I don't interact with the medical establishment. They are not a health care system but a medical industry. I object to all the debate around "health care" because that is a misnomer for the medical insurance business which is driven by the profit motive not any kind of caring much less for health. Our society is so deeply devoted to the principle of money over everything that those involved in it cannot see it. I hope you get well soon.

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Thank you for posting this. Ridiculous what happens in a hospital

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I'm sorry that happened and it's so true. Needs to change.

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Being your own advocate is vital.

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There are now patient experience departments at every hospital. Send this letter to the CEO and cc the Patient Experience Team at the organization. The organization is measured on these things now for reimbursement as well as accreditation. The CEO will act on this...if not...don't ever go back to that particular hospital unless you have too.

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I'm sorry for your ordeal, Wade. What happened to informed consent? I have had a similar bout of illness lately. I agree that our so-called health care system is moreso a medical industrial complex that sometimes is needed and sometimes helps. At Kaiser, which is lacking in many other ways, I have always been informed and asked for consent re interventions. Where did your experiences take place? Worthy of an official grievance!

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My sentiments precisely

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I go into my doctor's office with a list of questions. I'm lucky to be pretty healthy but the last medical issue I had, I had a specialist thank me for being a proactive patient. She said too many patients don't ask questions.

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Wade, I'm glad to hear you are feeling better, but what an ordeal. One person with bad communication I can understand, but an entire system? I agree that your description should go to the hospital admin. I had pneumonia about 4 years ago, and I found not being able to breathe well a very disconcerting sensation, to say the least. In diagnosing it, they kept asking me, "Do you feel exhausted?" And I kept saying "No, I just feel like there's not enough oxygen in the room and opening a window wouldn't help." It wasn't until later when the antibiotic started to work and I *could* breathe better that I felt exhausted. I realized that adrenaline from a very primal panic about not breathing was keeping me from feeling exhausted.

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I couldn't agree more with your statement: "...we need to apply holistic principles to every institution, not just health care. If we did, we would “transform the System.” But the world descends into ever more tribalism, materialism, and militarism." Wade!

'Holistic' to me means ‘integrated’. But the reality is that we live in a world where segregation, isolation and antagonism are the rule. "Divide and conquer" rather than "Unite and evolve", that is why 'the System' is broken.

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I'm really sorry to hear about this ordeal, Wade. I do agree with the other person who said that Kaiser is a lot better in this regard. I also had pneumonia about ten years ago, and although the active infection went away quickly, I was drained of energy for several months afterwards. I sure hope you don't have to deal with that.

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Wade Hudson continue to be proactive about your health; Be well!

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Thanks for sharing the story

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With you on all accounts! Glad you made it through. Very glad you are using the learning experience to help us and the hospital. Yes, empowerment and education are needed throughout society. Liberating structures as the scaffolding for reconstruction.

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i am glad you're doing better despite the poor treatment. Thankfully, my experience with heart surgery and recovery has been significantly more positive.

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Regarding what you wrote about your experience in the hospital and the general comments about health care and practitioners.  It’s really easy to blame the system — broken or otherwise.  But what came to mind for me was where do we as patients/users of the system take responsibility?  Do we ask direct questions about why we need a particular treatment or medication, what is it supposed to do, what are the side effects, etc.  I do this all the time, and

as a result haven’t had any problems with the doctors I see — including my adventures in the E/R.    Our parents’ generation accepted doctors as gods….”they know what’s best, don’t rock the boat” etc.  At least that was my mother’s philosophy. If we pay attention to our bodies they tell us what they need if we only listen.  Medical professionals are there to help because they MAY have more specific medical knowledge about what’s going on, but we can’t assume their solutions are the only ones.  I’ve had medications reduced and even eliminated because I said that’s what I wanted, and so far I’ve survived quite well.  And we have to ask and question. I think that’s what the intern meant when he said we are our own best doctors.

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Your article makes a number of good points about our paternalistic system. Whether it is medicine, law enforcement or the media we are treated as if we can NOT make informed decisions on our own.

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I am glad you are feeling better. Thank you for your articulate analysis. One of my adult daughters has had significant health issues for most of her life and we have had this conversation often as a family. We have come to the conclusion that there is an eerie similarity between the health system and the criminal justice system regarding disempowerment, "professionalism," disorientation and vulnerability. I'm glad you included the hopeful comments by the medical student and your primary care doctor.

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Hope you are feeling better. Pneumonia is serious and deadly.

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I'm sorry you had to go through this -- sounds like you were on your own during your hospital stay? Your "treatment" / mistreatment by medical professionals is something I’ve also experienced; not as a consumer but as a caregiver / advocate for people in Cambodia's even more wretched and class-based medical system, and then for my dad dealing with shockingly similar attitudes in Virginia. I learned in Cambodia that in order to survive the medical system, every patient must have an advocate. So it seemed natural to take on the role for my father (even though the doctors and social workers thought I was a hostile pain-in-the ass). I'm glad I persevered; on at least one occasion, if I'd left my dad in the hands of the 'professionals' one night and gone home instead, my dad would have died much sooner than he needed or wanted to…. Your primary care doctor sounds like a goddess-send. I believe she's the one who wrote about the healing qualities of gardening / farming, especially through contact with soil? This is a topic I've been exploring recently through workshops in horticultural therapy.

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Thank you, Wade. I wish that everyone who has such an experience would flood the media (social and otherwise), the hospital admins, the medical schools, the newspapers and beyond, so that patients would take it into their hands and REFUSE to be infantilized. In many ways we are a country of rebels, but when it comes to doctors and medicine we are amazingly compliant. And, I realize how hard it is for anyone to challenge a system when one is in the midst of illness or emergency.

Thank you for your part of testifying and waking people up. We are trying to do this about advanced directives for emergencies and end of life. What you are addressing affects many more people. Citizen driven research has been making strides. Seems like it could be even easier to move citizen-driven medical practices.  

I’m glad you have such a forward thinking primary care person. If that person is in SF, I’d love to know who it is for referral status

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hope you are feeling better! many blessings,

Patient As Doctor

Two days as an inpatient recently reinforced my opinion that the medical system paternalistically infantilizes patients -- a symbolic reflection of how the System itself systematically disempowers people.

A 103 degree fever led me to ER. Soon I was hooked to an IV that pumped something into my blood. They didn’t tell me what it was, give me a drug information sheet about it, seek my consent, or ask me about allergies. Some time later someone dropped a pill into my mouth without telling me what it was. I think it was Tylenol. Then someone stuck a cue tip into my nose without telling me what they wanted to do or why. It was to test for flu, which proved positive. I was also wired up for an EKG. No one told me why or asked for my consent. Later I was taken for an x-ray, which I happened to know was to test for pneumonia, but if I had not known that, I would have been clueless. They also, without telling me why, pumped oxygen into my lungs with a device inserted in my nose and attached a monitor to my finger to read the oxygen level in my blood. It wasn’t until the next afternoon that I learned why or the meaning of various levels of oxygen by doing research with my smartphone. When I asked for a list of all the drugs they were giving me for my various ailments, which included constipation and a urinary tract infection, the list did not explain which drug was for what.

Then the physical and occupational therapists swarmed on me. After chatting some and walking around the ward, the physical therapist told me she wanted to refer me to two weeks at a rehab center. “Ok?” she said. I thought that was ridiculous and remained silent. She repeated, “OK?” I replied, “I understand what you’re saying but I disagree.” I felt like she saw a wounded fish and was trying to reel me in to boost the case for her agency’s budget.

Later I told one of my medical students about that encounter. He said the whole team would discuss it. As he was leaving, he said, “Sometimes the patient is their own best doctor.” After he left, I broke down crying. Hopefully that student bodes well for the future of medicine.

I could continue. There are more stories. But I think I’ve made my point: Society should serve to empower everyone, everywhere, but we fall far short.

Fortunately, however, the drugs cured my fever and I’m recuperating at home, not some rehab center.

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Yesterday I met with my primary care doctor for the first time since discharge and learned that I had pneumonia (a fact no one at the hospital told me!). At the end of our session, I showed her this essay and asked her if she believed I was being fair with my criticism. Before posting it, I wanted her opinion.

Not only did she say the essay makes sense. She asked my permission to photograph it and post it to her Twitter feed!

I often feel like a lonely voice crying out in the wilderness. As I see it, we need to apply holistic principles to every institution, not just health care. If we did, we would “transform the System.” But the world descends into ever more tribalism, materialism, and militarism.

Lately, short of breath, I’ve been discouraged. But my doctor’s response heartens me.

We must nurture a deep commitment to the common good of the Earth Community and find others who share that goal so we can build the critical mass needed to change course. Humanity’s future depends on it.

Tax Reform: What’s Fair?

How much should various income groups pay in federal taxes? How much federal revenue would be generated by higher rates on the wealthy?

Forget “nominal” rates. What matters are “effective” tax rates -- what people actually pay.

According to the CBO, in 2013, the last year for which detailed data is available, the average before-tax annual income of the top 1% was $1.5 million. With their 34% federal effective tax rate, their after-tax income was $1.0 million.

Those in the 96-99 percentiles averaged $327,000 in pre-tax income. Their rate was 26%. So their after-tax income was $240,000.

The 91-95 percentiles averaged $200,000. With an effective tax rate of 23%, their average after-tax income was $155,000.

For the sake of argument, consider the impact of a graduated tax scheme that resulted in those income groups paying 60%, 45%, and 40% respectively.

That would leave them with after-tax incomes of $628,000, $180,000, and $120,000 -- substantial to say the least.

With their same incomes, the increase in federal revenue would total one trillion dollars.

That would be enough to hire 32 million full-time workers at $15 per hour.

Just saying.

What tax rates would you consider fair? Bear in mind the total local, state, and federal tax burdens as reported in the graphic.