I hadn’t planned on discussing the death of Jess Ainscough again, figuring two posts in a row were enough for now, barring new information. Besides, I was getting a little tired of the seemingly unending stream of her fans castigating me for being “insensitive” and saying it was “too soon” to discuss her death and wasn’t sure I wanted to reawaken that discussion, which is only now finally dying down. This was a young Australian woman who was unfortunate enough to be diagnosed with a rare form of sarcoma at age 22 for which the only known treatment with a reasonable chance of providing her long term survival was a radical amputation of her right arm. Her doctors tried isolated limb perfusion with chemotherapy, which made the tumors appear to disappear, but unfortunately they recurred after a year, which led back to the recommendation for a radical amputation, probably a procedure known as a forequarter amputation. It was at this point that Ainscough rejected conventional medicine to treat her cancer, embraced the quackery known as Gerson therapy, and became the Wellness Warrior, a popular advocate for “natural” living and the Gerson protocol. All the while, her tumor kept slowly progressing, and, less than a week ago, it finally claimed her life after nearly seven years.
Then I saw a column by an oncologist named Ranjana Srivastava in The Guardian‘s “Comment Is Free” entitled What do doctors say to ‘alternative therapists’ when a patient dies? Nothing. We never talk. (OK, actually, some commenters referenced it, and a couple of my raders sent me the link.) It’s an excellent discussion of a topic we don’t often think about. Dr. Srivastava uses Jess Ainscough’s case as a jumping-off point to discuss the very uncomfortable issues that come up whenever a science-based practitioner “shares” a patient with an alternative practitioner.
I might be a cancer surgeon, but, fortunately, I rarely have to deal with this issue because the treatment course surgeons offer tends to be a more immediate, shorter-term treatment. This is certainly true for breast surgery, which is mostly what I do, although for certain GI and other forms of surgery a patient can be seeing the surgeon for many months or even years. In any case, I usually see the patient, determine the operation she needs, do the operation, and then follow the patient until she’s done with all her immediate adjuvant treatment, usually between six and twelve months. Alternatively, if in my judgment the patient needs neoadjuvant chemotherapy to shrink her tumor before surgery, I will send her to the medical oncologist and see her again near the end of her chemotherapy to schedule surgery. It tends to be the medical oncologist who follows the patient for years, and during the chemotherapy phase (if chemotherapy is needed, which is isn’t always for breast cancer) might see the patient quite often over the course of the five months or so that it takes to administer standard chemotherapy for breast cancer.
They are the ones for whom Dr. Srivastava’s article will hit home, because they are the ones who have to deal with such things far more often than a surgeon like myself will. After all, usually, if the patient is willing to undergo surgery, she won’t be pursuing a lot of the woo described in this article. Alternatively, I tend to see the patients at the end stage of having pursued quackery instead of effective treatment, when they have huge fungating cancer lesions on their breast that I can’t do anything about, which happens (fortunately) not too often, but nonetheless more often than I would like. Actually, one in a career is more often than I would like.
Dr. Srivastava begins:
The consultation is over and I stand to escort her out. Through the open door, I notice the waiting row of patients staring drearily at the television.
“But I am not done yet,” my patient says plaintively. “I still have questions.”
She’s already extended a 30-minute consult and I’m pushed for time. From her purse, she unfurls a long list. With its different colours, arrows and flags it looks like a complicated transit map.
“Should I have my intravenous vitamins on the day of chemo or after it?”
I don’t have a chance to answer before she continues: “Can you move my chemo appointment to fit in a colon cleanse? They are really busy, you know. Booked out weeks in advance.”
Reading this intro, I thought: Dr. Srivastava has the patient of a saint. On the other hand, as I point out time and time again to tone trolls who object to the sometimes—OK, often—snarky nature of my online brain droppings as being so very, very mean, it is possible to act in different ways depending upon the situation. In other words, I never go full Orac on a patient, and, believe it or not, can exhibit quite a bit of patience with patients like this, for the simple reason that I don’t want them to die of their disease. (Yes, contrary to the seeming belief of some concern trolls, Orac is quite capable of adjusting his behavior and rhetoric to be appropriate to the situation.) That is not to say that I won’t be blunt sometimes. If a patient asks me what I think of Gerson therapy (and that has happened) I will politely tell her that in my medical opinion it’s pseudoscientific twaddle based on ideas about cancer that were fast on the wya to becoming outdated over 100 years ago. Most patients appreciate that. The closest I’ve ever come to going “full Orac” was when a patient asked me about Leonard Coldwell, because I view him to be as much a charlatan and con man as Brian Clement. I quickly restrained myself, but could not hide my alarm that my patient was thinking of going to Coldwell.
Irritation aside, it’s important to remember that patients like this really do believe that the quackery they are pursuing is every bit as important to their recovery as the chemotherapy, and no amount of evidence will convince them otherwise. If you understand that patients like the one Dr. Srivastava discussed really do think this way, then her wanting to delay chemotherapy for a colon cleanse because the colon cleanses are harder to schedule then chemotherapy or try to juggle her high dose vitamin infusions with the chemotherapy, when neither the colon cleanse nor high dose vitamin infusions add anything to her treatment other than a lot of expense and the potential complications and interference with her conventional therapy. From this, ethical conflicts arise. If we’re too blunt about what we think about the quackery, we risk driving the patient away, completely into the hands of the quacks, but if the patient wants us to cooperate with the quack, that’s an ethical problem too, because we as physicians shouldn’t be facilitating unscientific and ineffective treatment of our patients.
Most frequently, this issue comes to a head when the alternative medicine practitioner wants the physician to order tests that he can’t order, like CT scans, blood work, or other tests, to monitor the “progress” of the quack therapies he’s using. Dr. Srivastava describes exactly that, when a patient asks her for a “scan to show which natural therapy will best penetrate the tumour.” This is the sort of thing that drives primary care doctors to pull their hair out even more than oncologists, because the oncologists will inevitably decline, and that will drive the patient to go to their primary care doc. In any case, we’ve discussed this issue before with respect to Stanislaw Burzynski patients, as Burzynski requires them to have a local physician who will monitor them as they take antineoplastons. For example, in Eric Merola’s second paean to Burzynski, Laura Hymas taped a conversation in which she asked her oncologist to sign on to be the local doctor monitoring her during treatment with antineoplastons and ordering lab work, and he refused.
The key points Dr. Srivastava makes are two-fold. First, she notes that alternative medicine practitioners can be very callous about abandoning their patients at the end of life:
The emaciated breast cancer patient who was told to present to emergency because there was nothing else her alternative provider could do to help her walk. Neither could we. She died of spinal cord compression after vigorous manipulation of her back.
The man whose finances and prostate cancer had both spiralled out of control by the time he forked out $50,000 dollars on vitamin infusions. He regretted forgoing the proven benefit of chemotherapy.
There was the man whose wife discovered the extent of his natural therapy debt only after he died and was forced to sell the house.
Leading Dr. Srivastava to observe:
Abandonment by the oncologist at the end of life seems a common regret – but I dare say it pales in comparison to the blatant dereliction of duty by alternative practitioners when cancer patients fall really ill. If you don’t believe me, ask a GP or an emergency physician, the other professionals asked to salvage these patients.
There’s one difference between alternative medicine practitioners and real doctors. Ethically, we can never abandon our patients. When the patient gets too sick, the alternative medicine practitioner can just wipe his hands of her. Physicians have to try to do something regardless of how sick the patient is, even if that “something” is nothing more than palliation, a critical part of end-of-life care that alternative practitioners seem to have no concept of.
This leads Dr. Srivastava into her second point, which is that alternative medical practitioners almost never talk to oncologists sharing the patient, and in particular they never talk after a patient dies:
I asked this question of several doctors and the answer was unequivocal. “We don’t talk.” As in, we never talk.
Oncologists and alternative health practitioners move in different spheres though plenty of evidence suggests we end up looking after the same patients. When I discover (usually belatedly) that my patient endured the broken promise of an unproven cure, I feel dejected. The more expensive, extreme or exotic the treatment the messier seems the ending.
I have little expectation that someone who would sell false hope to a vulnerable patient would talk me through their reasons why. I once ran into a licensed doctor who oversaw $500 vitamin infusions for cancer patients. The moment when we discovered what the other did was awkward to say the least. My expression asked, “Why?” I saw him struggle with the answer before he said, “Because patients want it.” There was no common ground for a conversation and we slid away into the crowd.
Yes, to me it’s even worse when an actual physician administers quackery like this. The physician, I like to think, should know better. That doctor was right to be ashamed—and should be shamed. Unfortunately, with the rise of “integrative medicine,” what once was shameful is no longer so, at least not nearly as much as it was before. In any case Dr. Srivastava contrasts these practitioners with legitimate practitioners such as physiotherapists, palliative care nurses and general practitioners, who “seem to have no qualms about sharing doubt, seeking advice and negotiating compromise.” That, of course, is one of the differences between a legitimate practitioner and a quack.
It’s at this point that Dr. Srivastava nails the reason why there is no communication:
But the point of many alternative therapies seems to be in their secret powers of healing. I know it’s often said but I honestly don’t consider arrogance a good explanation for why oncologists and alternative practitioners don’t talk. I would, however, say that dismay and distrust feature heavily. As does the troubling realisation that a doctor can face reprimand for inadvertent error but an alternative practitioner can get away with intentional harm.
Exactly. Well, almost exactly. I do have to quibble with Dr. Srivastava on one point. Although it is true that there are a lot of con men out there who bilk the desperate, most alternative medicine practitioners sincerely believe in their quackery and think that they are actually helping the patient. They are not “intentionally” doing harm, but harm they are doing nonetheless. And it is perilous for a physician to be seen as cooperating with such a practitioner, because to the family it can give the impression of approval. If bad things happen, it’s not likely to be the alternative medicine practitioner who ends up getting sued, but rather the physician with the perceived “deep pockets.” Simple self-preservation is a powerful motivator for physicians not to do anything that could be perceived as assisting or helping the alternative medicine practitioner, as doing so risks being perceived (or just being) complicit in the quackery.
That’s part of why, in the end, as Dr. Srivastava mentions, the best most docs can do is to familiarize themselves with the various forms of unscientific medicine, although she doesn’t quite put it that way. A lot of doctors really don’t know what Gerson therapy is. They might have heard of the coffee enema part of it and laughed it off as “probably harmless,” viewing it as just another herbal treatment. When you tell these doctors that it involves five coffee enemas a day, thirteen freshly made glasses of vegetable juice requiring over 20 lbs of vegetables in fruit a day, as well as a boatload of supplements, all administered for two years, they recoil. As well they should.
One of my favorite teaching exercises with respect to “complementary and alternative medicine” for medical students and residents is to ask them what homeopathy is. Inevitably the answer is that it’s just some herbal medicine or other. I then lead them through the precepts of homeopathy, the law of similars and the law of infinitesimals, and how homeopaths dilute substances to the point where it is highly unlikely that a single molecule is left. Their reactions are inevitably of the order of, “You’re kidding, right?” I tell them that, no, I’m not kidding and challenge them to look it up for themselves if they don’t believe me.
One wonders if Jess Ainscough might have been persuaded not to do Gerson therapy if there had been a doctor caring for her who truly knew what the treatment involved, how it is based on an oversimplified understanding of cancer and the Warburg effect, and an understanding of human physiology that was becoming outdated a century ago. Probably not, but there are patients out there who might be so persuaded. However, we as physicians have no chance of doing that if we don’t understand what we’re up against.