One of the saddest things I discovered when I became a physician was how chaotic the referral process is. When you visit your primary care physician, if they decide you need to be seen by a specialist, they can refer you to one. Often, your insurance will require a referral before they will pay for specialist visit. This puts the primary doctor into a gatekeeper role, which means spending a lot of uncompensated time and effort making the referral happen. And from the perspective of the primary doctor (I was one), the specialists (I was one of those, too), and the patients (of course, I’m also that) it’s a mess.
Some stories about the referral process:
(1)
I once worked for a World-Famous University Hospital (WFUH) in their family medicine clinic. I saw mostly patients on Medi-Cal (California’s version of the US federally-funded Medicaid program for the medically indigent). My patients repeatedly and consistently told me that when I referred them for specialist care to the gastroenterology clinic, they never heard back. Eventually, I made nice with the clerk that handled referrals in the GI department. She told me — unapologetically — that their procedure was to go through their stack of referrals (referrals were all still done on paper then, even though officially the university had transitioned to electronic records some years earlier) and if a patient was referred who was insured through Medi-Cal, the referral paper was simply moved to the bottom of the pile. So, she told me, Medi-Cal patients would only be seen once all the patients with better insurance had been taken care of. She said she did not remember that ever happening in the years she had worked there.
What happened to these patients, you might ask? Basically, they suffered with their progressing conditions until they got sick enough to get hospitalized, and they got treated as inpatients: a solution that had a horrible cost both in terms of human suffering and in dollar costs to the system, as inpatient care is vastly more expensive than appropriate outpatient care.
I felt it was my duty as a physician to make referrals to doctors who would actually take care of the patients I sent instead of ignoring them. I started specifying community physicians not affiliated with WFUH on my referrals, but the clinic staff told me they were not allowed to refer outside the system. I sent an email to our director expressing my concern that this was expressly forbidden by Medi-Cal (in addition to simply being bad medical practice), and got the reply that there must be some kind of misunderstanding and OF COURSE I was allowed to refer to whomever I thought would provide the best care for the patient. Then I was cornered at a meeting where it was made clear to me that, if I expected to continue my employment, I would stop trying to refer out-of-system. Senior staff were well aware of the problems at the GI clinic but we all had to simply live with it (or die with it, in the case of the patients). I wrote letters up the chain-of-command but got no response to any of them prior to moving on. I left that position as soon as I was able.
(2)
I worked for a time in a community hospital where I was a physician on the “no doc” service. That meant that we took care of patients who got admitted, usually through the ER, who didn’t have a community doctor with admitting privileges to the hospital. These were, again, mostly Medi-Cal patients. Because Medi-Cal is a notoriously slow and difficult payor, if someone needed specialist care in the hospital, I would have to call specialists I knew who worked in the same hospital and beg them to see my patients. Some took pity, as I was still in training, but other times patients simply never got specialist care. In one case, I had a patient admitted with an unbelievably dilated colon confirmed on x-ray. I called the only GI doc available, and he said that the patient would already be dead, so he didn’t believe the x-ray report, and wouldn’t see the patient. I offered to take the film (remember film?) to him, but he said he wasn’t willing to waste his time on something so ridiculous. I ended up having to call another GI doc I knew who was on vacation and he was able to threaten and cajole the available doc into looking into the case. That took a couple of days.
The patient did not survive.
To be fair, he had multiple medical problems and it is not at all clear that a timely GI consultation would have saved his life, but I still feel as though he deserved care. I’m sure, of course, the fact that he was Black, gay, and HIV positive contributed nothing to the delays in getting treatment.
(3)
I was working in the ICU of a hospital that was owned by a large, staff-model HMO. Most docs feel that one of the advantages of working in such a system is that referrals are much less problematic. In this case, though, I was covering the Unit for the weekend, and on Friday evening one of the docs signed out a patient to me who didn’t make sense. She was actively dying, and a relatively straightforward procedure could save her life. I asked the doc why she hadn’t had the procedure: “I called GI, and they said she wasn’t sick enough for a TIPS.” I checked the chart and, sure enough, this patient hospitalized in the intensive care unit for this very problem was deemed “not sick enough to need the procedure.”
I called for another GI consultation as it was pretty clear the patient was in dire condition. I presented the case to the on-call gastroenterologist, who said he wouldn’t do the procedure because the patient was “too sick.” Oh, and this was the same doctor who, just hours earlier, had declared the patient “not sick enough” to warrant a life-saving procedure. I called the medical ethicist on-call, and was told that ethics really wasn’t an emergency service and they’d deal with it on Monday.
In spite of heroic efforts by the ICU team assisting me, the patient died during the night after hours of intense, horrifying interventions that I will never forget. I still have nightmares and it’s been decades. I started to write the details, but it’s too gruesome to put in a public space.
On Monday, the ethics team said that, as the patient was dead, there were no longer any ethical questions. The gastroenterologist said he was vindicated by the fact that she’d died: he clearly was right that she was too sick for the lifesaving intervention. He didn’t address how it was that she was too healthy for it just hours earlier. I dearly hope he enjoyed his Friday afternoon round of golf.
(4)
Again during residency training at WFUH, a big complaint of the trainees was that hardly any patients ever showed up for their scheduled procedures. It’s vital to get experience with procedures during training, so this was affecting a lot of my colleagues. Most procedures in a primary care clinic are for screening and preventive care (flexible sigmoidoscopy, for example) so it’s vital that patients get them. We had meetings about it where the referral staff talked about how they notify the patients, double-check, call them the day before the procedure, and they have no idea why they weren’t showing up. They’re just, you know, patients. By then, I had a number of patients whom I knew well who insisted that they never got any calls whatsoever.
So I came in to work one day and noticed that I had a surgical procedure scheduled. I knew the patient really, really well and was pretty darn sure he wasn’t going to be available for the procedure. I went to the referral coordinator (“RC”) and asked if she had called the patient. The conversation went something like this:
Me: “Did you call and confirm with the patient?”
RC: “Yes, I always do.”
Me: “So you’re sure?”
RC (growing defensive): “YES, I’m sure. At least twice. I always call when I schedule, and call again with a reminder.”
Me: “And he personally told you he was coming?”
RC: “Absolutely.”
Me: “Can you take a closer look at the referral [handing it to her] and tell me what is unusual about this”?
It took her a long time to notice that they had scheduled me to do surgery on myself. And, of course, I had received no phone calls of any kind. No voicemails. No hangups. Nothing.
She then became loud and aggressive and started accusing me of setting the whole thing up just to make her look bad (which, of course, I had no way of doing even if I had wanted to). Leaving aside the kind of uncaring, robotic inattention to one’s work that it would take to schedule a doctor to perform his own surgical procedure on himself, the fluent and aggressive lying was incredible. No wonder nobody ever showed up for their procedures. And, remember, these procedures were medically important, mostly for screening and prevention of, say, cancer — a subject very near and dear to me right now.
By the way, the senior medical and administrative staffers were nonplussed when I reported this. “Referrals are hard,” they seemed to say. I actually got admonished for “making trouble.” The referral situation did not improve during my continued tenure there at WFUH. I didn’t get my (fortunately non-critical) procedure until I transferred my care elsewhere.
All this comes to mind because of what happened when I got my recent diagnosis. The pathology came in on a Friday. My primary doctor contacted me immediately and referred me to two specialists: an endocrinologist and a surgeon. The surgeon got back to my family doc the next day (Saturday!) to talk about the biopsy results. His office called me Monday morning to schedule a consultation. I couldn’t make it until Friday because of a prior commitment, and he made space on a day he isn’t usually in clinic to get me in. Whoa! Within a week of getting pathology results, I had a surgical consultation, blood work, an ultrasound by the surgeon, a chest x-ray, an EKG, and surgery scheduled.
(5)
Contrast that with the endocrinologist. To be fair, he’ll make a fraction of the money that the surgeon will for this adventure. Nonetheless, the endocrinologist completely blew me off. No acknowledgement of receiving the referral. No phone call. When almost two weeks had passed with no contact, HA called the number. She was curtly informed that if the referral was urgent, they would get back to me within two days, otherwise it would take longer. HA had a copy of the referral in her hand, and pointed out the big URGENT stamp at the top and the checked “URGENT” checkbox and that it had already been about two weeks since they had received it. All she could do, the clerk said, is ask them to look at it again and call us back.
No call.
I contacted my family doc again and asked if he could refer me to someone else. He said that he’d been in touch with the endocrinologist’s office, that he had been on vacation, and that they’d call. I spent over 30 years in medicine and never, ever did I leave on vacation and just blow off any referrals or questions or whatever other medical business came my way. I usually was available myself, but had staff or colleagues available otherwise.
No call.
Even if he calls groveling later this afternoon, I’m not sure I want a doctor who just blows off his patients for weeks at a time. Even if he doesn’t think I need timely consultation, he should at least have let me know that. In other words, thirty years on, the referral situation doesn’t seem to have improved.
—2p
Addendum 03August2024
I didn’t think it could get much worse, but it did.