Q: … I have been in a relationship for about four years. My boyfriend and I are very young — we started dating when we were about 20 — and we’ve had a great relationship and are very much best friends. We agreed early on there was no need to rush and get married, but we frequently discussed our desire to be together for a very long time. Two years ago we moved in together and it was wonderful; we had a great life, great experiences, great friends.

My boyfriend has always had health problems, but a little over a year ago, things really got bad. There’s no need to go into the details, but suffice it to say, it isn’t going to go away, and it has impacted every aspect of our lives….

Sick and Hopeless

A: S&H, You’re allowed to leave. You’re 24. You didn’t sign up for this. I fear the longer you stay, the worse it will be when you bolt.

He’s your friend. You owe it to him to be honest. Tell him you’re not up for this. You can’t commit to this life, at least not as a romantic partner. You can explain that part of your decision is about age and place in life. I truly believe it’s not just his illness.

[...]

Dealing with a chronic is miserable.

[...]

Go be 24.

I have to assume that Ms. Goldstein meant to write, “Dealing with a chronic illness is miserable” – intending to empathize with the boyfriend in question. But what came out is instead dehumanizing and demonizing to the boyfriend. No longer is he a person with a chronic illness; he’s just another “chronic”, making people miserable. And if this syntax was intentional… that would just be a staggeringly cruel thing to write. Normally, I wouldn’t wish a chronic illness on anybody, but Ms. Goldstein might warrant an exception.

It’s not just that she comes off as a vapid bigot: Goldstein’s advice is empirically bad. She misses obvious clues in the letter:

…His interests narrowed, his mood soured (he’s being treated for depression). Our sex life dried up….

Of course, ‘sexual side effects’ are often a consequence of anti-depressants. Obviously, there is room for cause and effect here – a connection Goldstein doesn’t get. Then there’s this:

…and since our jobs take up much of our time, it doesn’t feel right to spend a large portion of my limited free time elsewhere…

So this guy is fighting a chronic illness – and working a full time job? No wonder he doesn’t have the energy for anything else – including taking care of himself. When I got really sick, it was all I could do to keep up with my part-time job. I can’t imagine how this guy drags himself through his days – and Goldstein doesn’t even try. And then the letter-writer says this:

On the other hand, he’s still my best friend, and I love him and deeply care for him. He’s in pain, both physically and emotionally, and he needs me. If I left, it would break his heart, and when I think about the reality of that, it absolutely shakes me.

So what’s Goldstein’s advice? “Go be 24″. Go be cruel and shallow and selfish and heartless, because that’s what it means to enjoy your youth. You’ll have your entire life to work through the guilt and shame you feel about bailing on this relationship, but at least you can having fun doing it! And if this situation should ever come up again – it almost certainly will – then you can worry about getting it right.

The tragedy of this exchange is that Goldstein could actually have helped her correspondent. Even though the writer feels like she has “tried everything”, there’s still room to save this relationship and her self-esteem. Couples counseling would be one way to look for that room, to help each other find ways to cope while he recovers. But some of the possibilities are just blindingly obvious to anyone not preoccupied with the New Kids and celebrity juice.

The most obvious problem here is the job: this guy needs a break. He probably can’t quit the job, because he needs benefits. But maybe S&H is allowed domestic partner benefits through her job – they would probably qualify, and wouldn’t need to get married. Even if that’s not an option, S&H’s boyfriend is entitled to up to six weeks of FMLA leave and reasonable accomodation from his employers through the Americans with Disabilities Act (yes, he is disabled).

The less obvious problem is pain: I would bet my stash of Vicodin that S&H’s boyfriend is not getting effective pain control. His attitude and habits suggest as much; I get the same way when I’m in pain, too. If that’s the case, treatment for depression won’t solve the problem – but solving it would make a world of difference. If S&H really loves her boyfriend, there’s a lot she can do to help him manage his illness and advocate for himself, and to help him better meet her needs in the relationship. Bolting will accomplish none of that.

Goldstein writes that “being a jerk is better than being a martyr” – that it is better to inflict suffering on others than it is to suffer oneself. Goldstein, in a few quick keystrokes, thus refutes virtually every theological or philosophical system of thought mankind has devised. Hell, I am a jerk – and I’d much rather be a martyr. But as much of a jerk as I am, at least I’m not ruining other peoples’ lives with my ignorance, selfishness, and bigotry. I don’t think Ms. Goldstein can say as much for herself.

(via In Sickness and In Health, of course)

Despite my loathing for hospital gowns, I recognize that those fly-away openings and simple, barely-there closures exist for easy access. In the end, forget designer garbs, I’d rather docs be able to access my body – especially in case of emergency.

I get where she’s coming from, but the gown does need rethinking. For one thing, hospitals are cold, and those gowns aren’t warm at all. And not everybody needs to wear the gown all the time; I think in most situations, patients get told to wear the gown because that’s what patients are supposed to wear, not because there’s any medical necessity.

The solution to this problem isn’t fancy new gowns; it’s the clothes most patients already have. When I’m in the hospital, I usually wear a t-shirt and pajama bottoms – usually old or ugly stuff I don’t mind trashing. My rule is that if I’d be sad to see it stained with blood or poo or cut off of me, I don’t wear it in the hospital. So far, though, I’ve never lost a garment to a medical emergency. Knock on wood.

Granted, there are some circumstances where pajama bottoms are contraindicated. In my case, that would be colonoscopy. But there’s nothing about a colonoscopy that wearing a gown makes more enjoyable. Instead, I wear the only thing that helps: a warm hat.

The first thing I did (yesterday) was schedule an appointment with my primary care provider, using the medical group’s online tool. I specified that I wanted to meet with my established PCP. Today I received notice that my appointment is scheduled for next week with some guy I’ve never seen before. He’s not even listed in their physician directory*; I know it’s just a TV show, but I can’t help remembering all those times on “Scrubs” when the janitor pretended to be a doctor. But since all I really need is a few referrals, it’s not that important.

Once I have the referrals, I’m going to choose a doctor. But first, I want to decide where – in which hospital – I am going to have this operation done. When I’ve picked my hospital, I can look for a doctor and surgeon with privileges at that particular institution.

The first tool I tried, Hospital Compare, is in fact pretty helpful. I got fairly detailed information on the three hospitals closest to my house: one teaching hospital (also my current hospital) and two community hospitals. One of the community hospitals had poor scores, so I dropped it and added another teaching hospital.

I found detailed information, but not necessarily the information I want to know – death rates, complications, malpractice charges. Instead, under the heading “Surgical Care Improvement Project Process of Care Measures”, there are questions about antibiotics and blood clots, and then this one:

Percent of surgery patients needing hair removed from the surgical area before surgery, who had hair removed using a safer method (electric clippers or hair removal cream not a razor)

There are also the results of patient surveys, with two questions in particular catching my eye:

Percent of patients who reported that they “Always” received help as soon as they wanted.

Percent of patients who reported that their pain was “Always” well controlled.

To me, these are a bit more important than what instrument the surgery nurse uses to defoliate my moss.

There was no clear winner from this comparison, although I am leaning towards the better of the teaching hospitals (not my current hospital). Just for grins, I also printed out the information from Orlando Regional Healthcare, the hospital where I had the original surgery done. It’s a community hospital, and I had a good experience there, but I still expected it to compare less favorably to the two teaching hospitals. To my surprise, it was close to or ahead of the teaching hospitals in nearly every measure. I was right: it is indeed a pretty good hospital.

However, in one category ORH came up consistently short: cost. For the type of surgery I am contemplating, ORH is $4,000 to $12,000 less expensive than any of the three hospitals in my neighborhood. The surgery costs $28,000 at ORH but $40,000 at the better teaching hospital. My insurance will cover most of the operation, so the difference is not a big factor in my decision – but remember that I already knew this (read about it towards the end of this post).

In a more perfect world, I would go ahead and schedule the surgery at ORH again. I had an excellent surgeon, I know the hospital, and my family lives nearby. But in the world I live in, that would mean another huge fight with my insurance company, just for the privilege of saving them a few thousand dollars. So to hell with that idea.

Instead, I’m going to start looking for doctors and surgeons in my area with privileges at the better hospital. That’s another set of tools, so I will post again once I have had the chance to work through it.

(*I did, however, find that a fairly visible doc blogger is part of the same group.)

This is timely for me, because I plan to get my plumbing re-connected this summer. I’ve been meaning to do it for the last couple years, but I think my time has come.

However, my gastro and surgeon both left their local practices since then, so I’ll be needing new doctors and maybe a new hospital. Normally this process would strike me as tedious, but given the hype about web-based information tools, I’m looking at it as an opportunity to try them out. Of course, I’ll report on the results of that process in future posts.

Sadly, in our great nation it not only makes sense, but is actually necessary.

Jennings is indulging – albeit mildly – in the worst tendency of sick people: the assumption that merely clinical details are fundamental to our experience of illness. Too often we hide within the walls of our diagnoses, and though we may well find some sort of strength there, at a broader, more essential level this habit is crippling. It prevents us from recognizing and acknowledging the many people who might share our experience, thus denying us community with the rest of humankind. If we can’t admit what is human in others, we can’t sustain what is human in us.

If you don’t know Jennings’s lessons already, print out a copy and keep them somewhere handy. But cross out “prostate” and “cancer”, and write at the bottom of the page this crucial lesson, the one that Jennings missed: we are all wonderfully and painfully human.

So, anyway. The question of a right to health care is related to another problem: our health care system ignores a lot of pretty ordinary rights that sick people ought to enjoy. Some folks assume sick people are demanding additional rights, when what we really want are the rights that everybody else enjoys. Privacy, for example, has been a big one, and so efforts like HIPAA and Patient’s Bill of Rights are worthy (but imperfect). More generally though, the sick person is often treated as if their illness can and should prevent them from enjoying their basic humanity. If you don’t know what I’m talking about, bear with me.

This isn’t another rights post – not exactly – but I want to point out one approach to rights, in which questions of rights begin with the question, what is a human? This approach has its roots in Aristotle, but more recently has been argued by Martha Nussbaum. In her essay, “Human Capabilities”, she argues that “the central goal of public planning should be the capabilities of citizens to perform various important functions”.

The sorts of things she has in mind are being able to live a normal lifespan, being able to move about, being able to obtain adequate nourishment and shelter, having opportunities for sexual satisfaction, being able to laugh, to play, to enjoy recreational activities. She draws a distinction between capabilities and functions; “can a person do it?” is a different question from “is the person doing it?” The problem is that too often we presume that because someone isn’t doing it means she can’t do it – especially when it comes to matters of women’s equality. If we assume a person can’t do something as a matter of biology or gender, we don’t have to worry about laws or rules or mores that keep them from doing it in practice.

But “can” and “is” are also a pretty important question, from the point of view of a chronically ill person. A lot of times, sick people are treated as if all other aspects of the patient’s life take a back seat to the illness. Maybe that  makes sense for acute illness, but for the chronically ill person that can mean ignoring broad swathes of one’s humanity for years at a time. There are a lot of activities I have been told not to do, or not to worry about, only to discover much later that I could and should have been doing them all along – that I would have lived a much fuller, much more human life for having done it.

Nowhere is this more obvious than inside most hospitals. Hospital patients get saddled with a bunch of assumptions about what they can and can’t do. These assumptions aren’t always justified, and sometimes they’re counterproductive. For example, exercise: most hospitals aren’t designed with any area for patients to exercise, but exercise is an effective way to help prevent pneumonia and aid healing. So patients are left to walk endless circuits of their hall floor, which is tedious as it is uncomfortable (all those open doors – yikes). Or going outside: most hospitals have no provision for letting their patients get some fresh air and a little sunlight, even though sunlight has a proven effect on mood and regulating sleep cycles. These are just a couple of demonstrably counter-productive examples; there are a lot more that are unjustified, but more controversial. I have found – and I think most sick people will find – that time inside the hospital is a much more tolerable experience once I am willing to challenge some of these assumptions. Granted, some of them are necessary – but a lot are not, or at least flexible. That is, the more I’m able to assert myself and claim an identity beyond that imposed by the hospital, the less dehumanizing and demoralizing the experience is.

This, I think, is generally true of medicine as a whole: we are often told to accepts trade-offs in which biology takes precedence over our own notions of what makes for a meaningful life. If you’ve been told you absolutely have to take prednisone despite all the awful side effects, you know what I mean. I don’t think we should look to the medical community to change their priorities, but nor should we fear to live our lives in ways meaningful to us, by whatever standard we use. That means looking at our care and treatment in terms of the broad contours of our lives, and not narrowly focusing on biology. Of course, many lucky people will find the two aligned nearly perfectly – but that shouldn’t prevent others from their own good life. Ideally, our health care system would empower patients to exercise this kind of authority – but that would take systemic reform more ambitious than most people realize.

I’m not arguing that Nussbaum’s approach gives us the best understanding of rights. I do think it raises some interesting and difficult questions for the health care system in this country, and these are questions we ought to be asking. In a perfect world, our medical system would reflect and appreciate the diverse ideas in our society as to what constitutes a good, meaningful life. But we don’t live in that world. In the real world, sick people are too often treated as either biologic failures or raw commodities, with our essential humanity a secondary and distant concern. It’s left to us to insist that we be treated as ordinary humans, with everything that entails.

*In Nussbaum and Glover. Women, Culture, and Development. (Oxford 2001)

With that in mind, a little backstory: in 2006, I was very very sick. I spent a total of 21 days in hospitals, spread out over three different hospitals and four distinct visits. Hospitalization got to be almost routine for me, so much that I began to plan for it. I found I didn’t really need much for a day or two inside, but by day three I started to miss certain comforts. So I packed a hospital bag – a small duffel I took with me to the ER, just in case I checked in for a while. Here’s what was in it:

• My basic medical information, including PCP name and number, specialist name and number, emergency contact info, insurance info, diagnosis, allergies, prior surgeries, and current medications. I was on an ever-changing roster of drugs, so updating this was kind of a bitch, but worth it. I had several copies, and would hand them out to docs and nurses instead of trying to remember the litany.

• Copies of my Living Will and Designation of Health Care Surrogate. These are absolutely necessary, in my view. This lady is full of crap.

• A list of phone numbers I might need – family, friends, work, anyone who might need to know where I am. Most of these numbers are in my cell phone, but I didn’t bother bringing a charger with me. The list was a handy back-up.

• Clothes, including underwear, pajamas, socks, zip-up sweatshirt, and t-shirts. Like vertebrates everywhere, I fricking hate hospital gowns: they’re always three Xs too L for me, they’re too thin to keep me warm, and I can’t stand having my boy bells flop around all day. The discovery that I can wear my own clothes was like a divine blessing. When I could, I wore underwear and pajamas underneath the gown. If I could convince the nurse to unhook my IV long enough, I put on a t-shirt and got rid of the gown. I also cropped the sleeves off a long underwear top, so I could stay warm without interfering with my IV. Sometimes, though, the most I could get away with was draping a zip-up hoodie over my shoulders like a cape. Most of these clothes are old and ugly – stuff I didn’t care about ruining or losing. As a rule, I didn’t take anything to the hospital I minded bleeding, pooping, peeing, or vomiting all over. Also, I didn’t take anything the color of blood.

• Some stuff they gave me the last time I was in the hospital, like lotion, no-rinse shampoo, mesh briefs, non-slip socks, mouth wash, a travel toothbrush. I kept this stuff mostly because it’s only useful in hospitals, but some hospitals are a little more stingy than others.

• An old electric razor and charger. I found that being able to keep myself relatively well-groomed really helped my mood when I was in the hospital. Outside the hospital, I’m pretty slack about shaving regularly, but I usually use a blade. Inside, the electric razor is a lot less likely to leave open cuts in my skin, with the consequent risk of infection.

• Gigantic elastic bands. Abbott sent them when I was taking Humira, because they thought I had RA. The rubber bands are a rudimentary exercise kit; again, pointless outside of the hospital, but useful inside just to have something to do.

• Earplugs – several pairs, 30dB or better (especially Leight Sleepers or Hearos). One of my biggest problems in the hospital was getting enough sleep. There was always some noise from the hall, televisions, roommates, helicopters, and so on. Good ear plugs were often the difference between sleep and unrelenting misery.

• Chemical heat packs. I am a giant wuss about cold; I can never stay warm enough in hospitals. These things, you expose to air and you get a nice little source of heat for eight hours or so. I made sure the nurses knew I was using them, so they didn’t decide it was some weird fever and freak out.

There are also some things I didn’t keep in my bag, but tried to remember to take with me when I was headed to the ER.

• A warm hat. Sometimes, this was the only thing I could wear besides a gown. It makes a big difference in keeping warm.

• Slip-on shoes. If I can walk, I do – as much as I can stand. Exercise enhances respiratory function, helping prevent pneumonia. Soft, comfortable, easy-to-put-on shoes made walking a lot easier and a lot more enjoyable.

• The oldest pair of glasses I can find, because I usually couldn’t wear contacts.

So, that’s my bag. For my last major hospital visit – my surgery – I did one other thing that helped tremendously: I cut off all my hair. I had come to hate the way my hair felt after a few days in the hospital, and since I knew I would be in for a week, I went to the barber and had it cut down to stubble. I could wash it with bar soap and a damp rag, and not worry about it.

That was two years ago. I’ve since let my hair grow out, but I still keep the bag packed on a shelf in my closet. I hope I’m done with the hospital for a good long while, but who knows? At least if I have to go back, I’ll have what I need already collected in one place.