Sunday, August 13, 2006

The Gormless Brigade: A Medical Horror Story

When I decided to become a volunteer hospital chaplain, I got a lot of negative reactions from family and friends. “Oh, no! You aren’t going to turn into one of those people who marches into a hospital room and starts thumping a Bible, are you?” “You aren’t going to turn into one of those people who shows up with a simpering smile, leaves a prayer card on the bedside, and vanishes again, are you?” “You aren’t going to turn into one of those people who says I have to accept Jesus for my illness to be cured, are you?”

No, no, and no. My training emphasized that the first principle of pastoral care is meeting people where they are, instead of telling them where they “should” be. Proselytizing is forbidden (and isn’t something I’d be inclined to do anyway). Our goal is to learn enough about the patient’s belief system to try to help that person marshal emotional and spiritual resources. This means that a lot of the time, I don’t even talk about God. I’ve had pastoral conversations about people’s grandchildren, about their pets, about Buffy the Vampire Slayer. I try to learn what people love -- whether that’s cooking or genealogy or Little League -- because the things we love are the things we live for, and that means they’re the things that heal us.

But listening to all those horror stories about hospital chaplains, I remembered one of my own.

Caveat Lector

I’ve dithered for a few days about whether to post this, because you can’t get the full effect of the gormless-chaplain story unless I first tell a gormless-gynecologist story and a gormless-ER-doc story. (Lest you think it’s all bad news, there’s a saintly ER nurse in there, too.) To tell those stories, I need to go into some fairly graphic and personal details that might embarrass people. They don’t embarrass me, but I don’t want to make anyone else uncomfortable.

I’m offering this as a cautionary tale to medical and pastoral caregivers about what not to do, although I hope most folks would know better anyway. But if you’re embarrassed by graphic medical stories, especially about the female reproductive system, please don’t read this. Also, this is quite long. I considered breaking it up, but my husband thinks it should all be one post.

The Gormless Gynecologist

Long, long ago, in a galaxy far, far away (popularly known as New Jersey), I had an abnormal Pap smear. This meant that during a routine pelvic exam, my gynecologist found pre-cancerous cells on my cervix. To determine the next step in medical treatment, I needed a colposcopy, a specialized examination and biopsy of the cervix.

Colposcopies are office procedures. Gary and I were living together, but not yet married. His best friend had just died of cancer, and so -- even though my gynecologist’s nurse assured me rather impatiently that the abnormal Pap was really nothing to worry about -- we were both anxious. Gary volunteered to come with me to the colposcopy, to hold my hand during the procedure. (This meant the world to me. Any guys reading this: if you really want to score brownie points with your significant other, offer to go along during medical procedures!) The day before the procedure, he’d popped a tendon playing tennis, but -- in typical male fashion? -- he stayed quiet about how much pain he was in.

So we’re in my gynecologist’s office. I’m up on the table, in stirrups. Gary's standing beside me, holding my hand. My gynecologist, who’s young and female and subscribes to the “tell the patient exactly what you’re doing at each moment” school of medicine -- which I normally appreciate -- is giving me a perky, chatty tour of the procedure. “Okay, Susan, now I’m inserting the speculum! Okay, now I’m staining your cervix with vinegar! The vinegar makes the abnormal cells turn white under this special light we’re using! Oh, look! There are so many abnormal cells that your cervix looks like a glazed donut!”

Those were her exact words. I felt like I’d been punched in the stomach, but at least I was lying down. Gary was standing up. His calf was massively swollen from his athletic injury. His best friend had just died of cancer. The room was also rather warm. The upshot of all this was that he turned gray and began sweating copiously. “You don’t look too good,” the doctor told him.

She and her nurse promptly abandoned me to make sure Gary wasn’t having a heart attack. (He wasn’t.) They left me dangling in those stirrups, worrying about him, for a good twenty minutes. Because of all the confusion, when they did come back, they forgot to give me discharge instructions.

Discharge instructions include symptoms of post-biopsy infection: “If you develop nausea or a fever, call your doctor.” I hadn’t gotten the instructions. So two weeks later, when I developed fever, nausea, vomiting and diarrhea, I assumed I just had the flu. But after several days, the nausea turned into periodic waves of wrenching abdominal pain: pain that, when it hit every few minutes, left me gasping for breath and curled into a little knot of agony. You know that 1-10 pain scale, with 10 being “the worst pain you’ve ever felt”? This was a 10.

Enter Saint Nurse

Gary and I went to the nearest ER, which happened to be a Catholic hospital. I was wearing jammies, slippers and a bathrobe, walking doubled over because of the pain, puking into a plastic bowl I was clutching to my chest. When we walked into the ER entrance, the person behind the registration desk took one look at me and said, “You go right back there and lie down, honey.”

By some fluke, the place was almost empty. I got prompt attention from a kind, funny, personable ER nurse. Between waves of pain -- now somewhat reduced by pain meds -- she asked me about my graduate work, chatted about my doctoral dissertation, and generally treated me like an intelligent, competent human. And when my bloodwork came back with a white-cell count of 29,000 (normal is between 5,000 and 9,000), she became very grave and quiet, and told me quickly and gently -- as someone else quickly and gently started an IV for antibiotics -- that I had a very serious infection and would have to stay in the hospital.

Enter Gormless ER Doc

I’d told Saint Nurse about the colposcopy, and the ER doc wanted to do a pelvic exam. This doctor had already lost points for telling Gary to go sit in the waiting room. My impression at the time was that he kicked Gary out because we weren’t married; he asked Gary to leave when he heard the word “boyfriend.” Maybe he would have asked a husband to leave, too. I don’t know. I wasn’t yet a churchgoer -- that wouldn’t happen for another few years -- and I was very conscious of being in a Catholic hospital. That definitely colored my perceptions of what followed. (I volunteer in a Catholic hospital now, and I love the place, but I’m also very sympathetic to patients who are nervous about being in a faith-based institution.)

Maybe the ER doc was having a lousy day, even though the ER was temporarily quiet. Maybe he was just very bedside-manner-challenged. Maybe what happened next had nothing to do with the fact that a) he knew I wasn’t married and b) I was about to be admitted to the hospital with a diagnosis of Pelvic Inflammatory Disease. PID is most often caused by untreated STDs; it sometimes results in infertility, which will become important later in this story. My interpretation of events may have been swayed by the fact that the doctor was clearly from India and that his English wasn’t terrific; this made me wonder if he had more conservative beliefs about sexual mores than an American doctor might. (Someday I’ll post about the role of gender, race and social class in the emergency department. They definitely affect patient-staff interactions, but they aren’t often discussed.)

Whatever his reasons, this doctor gave me the roughest, most painful, most callous pelvic exam I’ve ever had. I clung to Saint Nurse’s hand, trying to be a good patient, trying not to whimper. When the exam was over, he took out the speculum, held it up so I could see the bloody pus on it, and glared at me as if I was something he wanted to scrape off the bottom of his shoe. “This is bad discharge,” he said, his voice dripping scorn. Saint Nurse squeezed my hand.

“I’m due for my period,” I said. “Could that be some of the blood?” (As it turned out, I had indeed just gotten my period.)

“Yeah,” Saint Nurse chimed in eagerly. “Could it?”

He curled his lip. “This is really bad discharge.”

I felt like the Whore of Babylon. Why was he talking to me that way? I was already sick as a dog and about to be hospitalized; was he trying to make me feel even worse? Later, when Saint Nurse was taking me up to my hospital room, I told her, “You have a much better bedside manner than he does.” She giggled. She didn’t seem to think he was a horrible doctor, so maybe he really was just having a bad day. He shouldn’t have taken it out on me, though.

Enter Gormless Chaplain

Upstairs in my hospital room, where I went through severe separation anxiety because Saint Nurse had gone back downstairs to the ER, I lay in bed, wondering when I’d see another doctor. My eyes were tearing from the pain of the IV: they had me on doxycycline, which is great stuff (it brought my white count back down to 9,000 in two days) but also burns the veins going in. I didn’t expect to see another doctor that night, but I was sure I’d see one in the morning.

The next day, my sister and mother visited, and Gary came and played Scrabble with me to distract me from the pain of the IV -- I got a new dose of doxycycline every twelve hours, and quickly learned to dread it -- but no doctor came.

The next morning, my aunt and uncle and several friends visited. Still no doctor. In the afternoon, my sister came by again, and she was still there when a short, excessively cheerful man appeared in the doorway and said, “Hi, Susie! I’ve come to see how you’re feeling!”

I stared at him. “My name’s Susan.” Blood relatives and extremely close friends who’ve known me for longer than twenty years get to call me Sooz. Nobody calls me Susie. “Are you my doctor?”

He chortled maniacally and bounded a few feet into the room. “Well, hi there, Susie! So how are you today?”

My sister looked alarmed. I shrank back against my pillows and tried to stay calm. “I prefer ‘Susan,’ thank you. I’ve been waiting to see a doctor. Are you my doctor?”

He beamed at me and hopped closer to the bed. “So, Susie, you seem to be in a good mood!”

At that point, I lost it. ”My name’s Susan. Who are you?”

“I’m the chaplain!” he said, chuckling. (My sister told me later, “You should have seen the look of relief on your face when you found out he wasn’t the doctor.”) He asked me if I’d like him to pray with me. I thanked him but explained that no, I wasn’t religious. It turned out that he was a Catholic priest. Somehow we started making small talk -- I didn't know that I could tell the chaplain to go away, and I wasn’t going to kick a priest out of my room in a Catholic hospital -- and discovered that we were both writing doctoral dissertations. He asked what mine was about, and I told him that I was writing about runaway mothers as figures of social reform in nineteenth-century British and American women’s writing.

He beamed at me. “Oh, how wonderful! Motherhood is women’s highest calling!”

I think my jaw dropped. The dunderheaded sexism of the comment would have been bad enough, but I was in the hospital with a diagnosis of a condition that could have left me infertile.

Now, I was positive that I didn’t have classic STD-related PID (and indeed, the STD tests came back negative). I was positive that the infection was somehow related to the colposcopy, although there was no way to prove it. And I’ve never wanted kids, so the fertility issue was far less important to me than it would have been to most women.

But he had no way of knowing any of that. If fertility had been an issue for me, his comment would have been devastating (even aside from its dunderheaded sexism), especially after I’d felt so judged by the ER doctor. “Whore of Babylon, your licentiousness has barred you from Woman’s Highest Calling!” For many reasons, I wasn’t about to buy into that message, but many other women might have.

I don’t know if the chaplain had access to my chart or not, and I don’t know if he’d have had any clue of what “PID” meant if he’d read it. When I became a chaplain myself and worked on medical floors, before I discovered that I preferred the ER, we were required to chart on patients (“Prayed w/pt” was the standard note). When I could find the chart -- which wasn’t often -- I usually tried to make some sense of the History & Physical section so I could suss out any potential landmines before I met the patient.

Nobody’s perfect. I believe that this chaplain was a genuinely sweet, if gormless, man who was truly trying to cheer me up. Even at the time, I wasn’t as upset with him as I was with either my gynecologist or the ER doc, and now I have quite a bit of sympathy for him. I know I’ve put my foot in it with patients sometimes too, and we worship a God of forgiveness.

But the lessons remain. Medical caregivers: please try to think about how your words would sound to you if you were the patient. Pastoral caregivers: please remember to introduce yourselves and your function right away, and try to avoid bringing up potentially sensitive subjects unless the patient does so first. And if you have any access to information about the medical condition being treated, educate yourselves!

Epilog

After I’d gotten out of the hospital and had recovered completely from the infection, I had laser surgery to remove the abnormal cells from my cervix. (I had a bunch of other tests, too, to make sure nothing else was wrong, but that’s another set of posts.) I’m delighted to report that since then, I’ve been fine, and all of my Pap smears have been normal.

10 comments:

  1. I really felt for you and your trials at the hands of the gormless of ER. Cathie has a recurring and undiagnosed problem that has resulted in more than one ghastly internal examination at the hands of her (female) General Practitioner. Maybe it would be easier for her if I was allowed to be there - probably not, I tend to get agitated at the thought of anyone hurting my baby - but I get to do a lot of hand holding in the aftermath.

    I await your dissertation on race, gender and class in the ER with interest. Cathie has a lot of tales that she won't tell out of hospital (except to me, and my lips are sealed). She is especially vexed by the attitudes she encounters from nurses and doctors of Chinese origin towards any colleague 'of colour', and especially Filippino.

    At least you have chaplains. Over here, management in the NHS appears to regard Christian conviction as the equivalent of leaving girl children on the mountainside. The superstitions of lesser races have to be tolerated because the hospital would get into trouble if it applied the same standards to Sikhs, Moslems, Hindus and adherents of all other beliefs, but to a modern English person, such atavisms are not to be tolerated in case they are infectious (okay, so I'm exaggerating but sometimes it feels that way - the new manager at one of our local hospitals demanded that a crucifix be removed from the chapel in case it offended anyone of another faith - or lack of faith, more likely - a Christian chapel!

    Sorry, that's a bit of a rant. The only time I really experienced the presence of a chaplain in hospital was when our first daughter was still born. Our vicar and his wife (who was a nurse in the hospital) rushed over, and I ended up comforting them, instructing them about divine will! Oh well, we all have our coping mechanisms, and they are both open and beautifully sincere people who were of immense help to us in the aftermath. I must have seemed like an insufferable prig at the time, but it was an educational as well as devastating experience. I can allow that stiff upper lip to wobble, these twenty years later.

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  2. That story reminded me of two bad OBGYNs I had - One who would look down then look at me and say "Are you SURE you dont want plastic surgery for that?" (not until you said that like 12 times) and my last OB who said after my son was born -
    "We gotta get you on birth control. We dont want to go through THAT again."
    Luckily I have a great sense of humor.

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  3. Martyn, I'm very sorry to hear that you and Cathie lost a child. From everything I've seen and read, that's the hardest grief there is.

    Re chaplains: My Spiritual Care department is strongly interfaith (we've had Quaker and Buddhist chaplains, and our printed resources include Jewish, Muslim, and Sikh prayer cards). But I'm told that the trauma hospital in town, while it uses community clergy as visiting chaplains, "doesn't believe in" ER chaplains (is that like not believing in Santa Claus?). One of these days, I'll write a post about how, in a perfect world, every ED would have round-the-clock dedicated spiritual-care staff. (Of course, in a perfect world, many other things would also be different.)

    Re race, gender and class: I've honestly seen hardly any discrimination on the part of staff; the problem is that patients sometimes perceive staff behavior as discriminatory when it's really just a function of workload, the triage system, ED culture, etc.

    That girl: Sounds like you've had some clueless Gyns also! After the colposcopy adventure, I switched to an excellent male gynecologist; when he heard the story, he shook his head and said, "Doctors need to learn when to shut up." True fact.

    But this female Gyn had come very highly recommended by a number of friends, and she did a good job on my surgery. She just let a few too many words slip out during that procedure!

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  4. one of the hospitals that my wife goes to during the course of her normal day is named after a Saint too. She often has prize things to say about management, but the docs and the rest of the staff (minus the chaplains of course) aren't generally any more or less religious than anywhere else as far as I can tell. They do put up gormless billboards in town talking about being the cities "only faith based medical center" and other such silly things that dont make any sense.

    To my mind "faith based medicine" is like saying transluminescent peanut sorting, or foam curved happiness. Just doesn't make any sense at all...

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  5. Hi, NephSpouse! I like your blog! Terrific picture of all those tub toys. (And yes, I'd be a bit unnerved if they were staring at me, too.)

    I now realize that employees and staff at Catholic hospitals aren't necessarily Catholic themselves, but I didn't know that when I was in that particular ER (more than ten years ago).

    And actually, faith-based healthcare makes a lot of sense. It's an acknowledgment that spiritual issues are almost almost inextricably entangled with medical ones, and that care that addresses the whole person will very likely be more effective than care that just addresses a set of medical problems.

    You don't have to be formally religious to benefit from the services of a chaplain. Almost every hospital patient is, on some level, wrestling with Big Questions in addition to medical symptoms: "Why me? How can this be happening? What next?" Chaplains help people make sense -- make meaning -- of their experience. That's our job, regardless of the patient's faith or lack thereof.

    Various spiritual states also have a huge physical impact. A disproportionate number of the ER patients I see have been recently bereaved; grief is hard, stressful work, and will almost always exacerbate any existing medical conditions. Those patients will be better off if, in addition to medical staff treating their physical symptoms, a chaplain is there to help them with grief issues.

    In my hospital, chaplains write their notes in the "Multidisciplinary Team" section of the chart, the section that also includes social workers, physical therapists, nutritionists, and so forth. Again, this a way of acknowledging that patients are whole people, and that social and spiritual contexts matter.

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  6. Anonymous3:52 PM

    I am a catholic, and I really don't understand why you would think the chaplain was sexist for saying "motherhood is a woman's highest calling". Obviously a catholic priest is not a father, and he works with nuns who are not mothers. He is just saying that motherhood is special, and mothers are special. Its the "highest calling" which obviously isn't attainable by everyone. Do you look down on mothers? Did you have a mother? I just lost mine and let me tell you, they are special. No one else can be your mother but your mother.
    I also have to say that if you feel a OB/GYN is looking down at you for thinking you have an STD, I have no problem with that. Promiscuity is spiritually damaging. Any doctor or chaplain who told you to be chaste is doing you a favor- for your body and your soul.

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  7. Dear Anonymous:

    Of course I have a mother, and I love her dearly. I'm very sorry you've just lost your own mother. But saying that motherhood is EVERY woman's highest calling is like saying that having rhythm is EVERY African-American's highest calling. It's an inherently bigoted statement, because it lumps everyone in a group together instead of treating them as individuals.

    I believe that each of us is a unique individual created by God, and that part of our life's work is to discern our own highest calling. For some people (male and female), that calling will be parenthood. For many people, it won't be. The fact that someone's a woman doesn't mean that her highest calling has to be motherhood, rather than mathematics or microbiology.

    As for the STD issue: first of all, I didn't have an STD. Secondly, whether the doctor thought I did or not, judging me isn't his job. Giving me kind and effective medical care is his job. And even if I'd indeed had an STD, how could he have known that I hadn't acquired it from rape or incest or an unfaithful partner? Assuming that people's health problems are always their own fault is known as "blaming the victim," and it's particularly egregious when the patient involved does not, in fact, have the health problem that's being judged.

    Compassionate medical treatment makes good practical sense, because people who are afraid they'll be looked down on by doctors are likely to avoid treatment. In the case of STDs, that's especially dangerous; this is a public health issue.

    But if good practical sense doesn't convince you, perhaps the words of Jesus will. "Whatever you have done to the least of thse who are members of my family, you have done to me." Most of the Catholics and other Christians I know believe that this calls them to seek Christ in all people, but especially in people they might otherwise be inclined to look down on. Most of my Catholic friends would agree very firmly that a judgmental doctor isn't being a good Christian; and most of my doctor friends would agree very firmly that a judgmental doctor isn't being a good clinician, because patients don't trust people who are looking down on them.

    Shame's bad medicine, any way you look at it.

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  8. Anonymous8:15 PM

    Susan,
    thank you for your thoughtful response. I don't want people to feel so much shame that they don't go to the doctor, and of course women can be monogamous and still get an STD from their partner. BUT, as a "woman of the cloth", you are cherry-picking the parts of Jesus' teachings that you like and ignoring the ones that you don't.
    I know that Jesus wants us all to love and accept one another, but the bible also says that you must tell people when they are sinning. What if no one else ever has? As a clergyperson, you should be judgemental. It sounds like you are so broad-minded that you cannot even take your own side in an argument.
    If you are a hospital chaplain and you are at the bedside of a person who is a drug abuser or prostitute (which some people think are victimless crimes), do you tell them they are sinning and turning away from God? Or do you tell them where to get clean needles and free condoms?
    As a chaplain, I think it is your responsibility to judge, and advise accordingly.

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  9. Dear Anonymous,

    Thank you for coming back! I didn't think you would; you've proven me wrong. :-) (Well, we know what they say about assumptions!) And thank you for responding so thoughtfully to my response.

    To correct one misunderstanding right away, I'm not clergy. I'm a lay minister and volunteer.

    And the judgment issue is tricky in general in the ER (something I plan to post about soon, since it ties in with the race/class/gender issue).

    You asked:

    "If you are a hospital chaplain and you are at the bedside of a person who is a drug abuser or prostitute (which some people think are victimless crimes), do you tell them they are sinning and turning away from God? Or do you tell them where to get clean needles and free condoms?
    As a chaplain, I think it is your responsibility to judge, and advise accordingly."

    I encourage them to lead fuller, healthier lives -- which is one way of turning towards God -- and I assure them that I believe they're capable of doing that. I think it's the job of anyone in a pastoral-care position, clergy or not, not to give up on people, especially those who've given up on themselves, as so many addicts and other stigmatized folks have. I tell them about people I know, including my own mother, who have recovered from addictions. I try to give them hope, which is one of the most powerful forms of healing.

    And in the meantime, I'd absolutely encourage them to use clean needles and condoms. These two messages aren't incompatible!

    In San Francisco, there's a free health clinic that provides nonjudgmental medical care and social services to sex workers. I found out about it because I know someone who writes grants for them. The clinic's philosophy is that when people are ready to leave that life, they'll absolutely support those efforts, but in the meantime, they'll do as much harm reduction as they can, so that people who aren't ready to leave can stay safe and healthy. I think this is an eminently loving and sensible approach, not at all incompatible with Christianity.

    People are more motivated to change when they feel loved than when they feel shamed. If you're going to tell people they're sinning, you have to come from that "I really care about you and that's why I'm saying this" place for the message to get through, which means that strangers aren't the best people to deliver it.

    God loves us just as we are, and God also loves us too much to allow us to stay that way.

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  10. A different anonymous person8:39 PM

    I stumbled upon this post completely randomly, and although I am not religious, I sympathize with Susan's compassion and humanism, irrespective of religion, and think it is really sweet.

    However, in regards to "anonymous"s comments, I'm revolted and insulted as a human being that, supposedly in a position of consoler, one should choose to scold a sick person instead of actually giving them practical health-related advice. While I participate in neither, I am one of many people (most? who can tell) who do not think drug use or prostitution are crimes in themselves as long as one is not hurting anybody else. So absolutely I would tell them how to get clean needles and contraception/STD-prevention (as well as counseling, drug rehab, a sandwich, etc.). It galls me that you would choose instead to indulge in your own sense of moral superiority. Browbeating sick people is not "compassion". If you are just coming to scold sick people, why are you in my hospital? GTFO! I really hope to avoid you when my time comes. Man, Hitchens is right, religion does poison everything.

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