Since I wrote this in 2012, I have been blessed with the most wonderful assortment of doctors. I’m feeling bad now about my rant, but I’m not going to take it down because it was certainly true to my experiences. Great doctors, doctors that listen, are out there. Wishing you great luck in finding them. Keep trying, they are there.
I was thinking back on how many primary care physicians I’ve had in my life, having moved around a bit over the years. About 40 I think, and I would say most of them were at least competent if not excellent in their medical knowledge and application. Thinking about those 40, sadly there are only 4 that I think ever cared about me as a human being, ever even saw me as anything but a patient – a category with x number of minutes allotted. Going to the doctor’s office for me is usually an exercise in frustration. I feel usually like the doctor is somewhat bored and/or that my presenting problem isn’t important. I try to look at it from their point of view. Yes, it probably can be boring doing this primary care work, yes people do come in for things they could probably take care of themselves. Yes, patients can be non-compliant, whiny and I suppose generally a pain in the butt. I try not to be any of those things but I’m not their colleague, neighbor or friend, and I can feel their lack of engagement with me. And I’ll admit, I can be a hard patient to treat because I want to make my own decisions. I’d like to be listened to – it is my body and I do have some inside information, literally. I’d like to have my options discussed, I’d like to have my perceptions and feelings valued.
I think doctors may just be a part of this equation though. I have read a lot about going through medical school and how that bright compassionate drive to help people is slowly rung out of medical students in many ways, how they are taught to be detached and aloof. I suppose partly it’s to save their sanity. I mean, how many of us could watch their patients die day after day, lose limbs, go blind, suffer agonies and not suffer along with them? This distance between patient and doctor, I suppose, preserves the doctor’s own personal life. And yet. There is such a gulf between us, patient and doctor. True healing begins when you take a person’s hand, look them in the eye and listen to them. That’s the start of everything healing. My experience in a doctor’s office is that I’m talking and the doctor is typing. At least at my HMO, they now have computers on a swivel so the doctor can actually have his head pointed in my direction when I’m talking, even though the eyes are on the keyboard. So they must know how bleak this can all seem to the patient.
This detached aloofness can be very damaging and feel like a complete lack of interest, care and compassion. After I had my endoscopic ultrasound (which is the method that was used to get a biopsy of the lesion in my pancreas) I got a call a few days later; just before dinner, I remember it so clearly. I picked up the phone and the voice said this is Dr. X (I think I might have met her once, just before being wheeled into the ultrasound room). You have pancreatic cancer, and she told me the type. Then she said you’ll be contacted about an appointment with the surgeon. Good bye. I want to say she said good luck, but I don’t think she did. It’s hard to type this even now. I felt like someone had stabbed me in the stomach and left me there to bleed to death on the floor. Someone told me the other day that his doctor had left his pancreatic cancer diagnosis on his voice mail. Good Lord. If any doctor is reading this, I want you to know this is not healing. This is so far from healing. This is much more like giving a death sentence from the bench. The emotional toll it takes on a patient is unforgivable for anyone who has taken the oath to do no harm.
This illness has also opened my eyes to a part of medicine I never really saw before. You may think your doctor and you are on the same page. But maybe not. I’ve had what seemed like very surreal moments during the course of this illness and I think it’s because my expectations were at odds with the medical system. For instance, why are doctors not interested in people who have spontaneous remissions of cancer? Wouldn’t you think that they’d be beating down the doors of those people, trying to research why this happened, how the cancer was eliminated, what the person did? All without treatment, all without the brutality of chemo and radiation, all with only the body’s own power? But the reaction I’ve seen from doctors when this happens is mostly ho-hum. One said to me, yeah, these things happen. Excuse me, but this is my body here and I’d like “these things” to happen to me and to others. I ask myself, why are they not even interested? Why are we so often treated like idiots? Why won’t a doctor listen to your own take on your own body? This illness has left me often puzzled and disappointed by the medical system.
So why? Well, I’ve given it a lot of thought and I’m giving them my best benefit of the doubt (leaving out politics, money and ego). At least as far as my (our) relations with doctors, the best I can come up with is that the doctor is not free to do what she wants – or what might even seem to you to be common sense. She has protocols to follow, parameters to be within, goals to be met. Of course, I’m in an HMO. But doctors who have their own practices as just as hemmed in by insurance companies, rules and regulations regarding patient care. The doctor of today is not a free agent to give you the best care he can. He is a prisoner of the medical establishment as much as any patient. At least, that’s my take on it and I worked in the medical field for a long time before I retired. I worked there before insurance took the stranglehold it has today on medicine. I saw the ICDs come in, the coding, the mindless, numbing paper work, the time constraints. When your doctor treats you, you are but a tiny tip of the iceberg of the work she has to do or the organizations she is obligated to. You are NOT the center of her world, you are (my experience) a minor player that struts on the doctor’s stage. My advice to all us patients out there would be to take some time understanding our own expectations, have them clearly in our minds, and then when things deviate from our expectations, speak up. We can ask the doctor if things could be different. We should always be able ask for what we want and need. We won’t necessarily get it, but I found being clear within myself was extremely helpful when I was with my doctor.
Because I chose not to go along with standard treatment, I knew that I would get some pushback. The reaction among my doctors varied. Some were angry, some impatient, some sympathetic, some irritated. Because of all that, and my personal wish to avoid being medicalized, I avoided going to the doctor. Much was offered to me through my HMO. Cancer counseling, a library to research the cancer, kind and generous staff to help me through, referrals to specialists up the yin yang, pain meds, whatever they could provide, they tried to provide. I don’t fault them at all, they went above and beyond. But I took very little of it. One reason was that I didn’t want to be walking the halls of the oncology center time after time, breathing that sterile air, living what remained of my life in an endless round of testing and appointments. Another was that I didn’t want to have my diagnosis seated deeply into my consciousness, always seeing the “oh death sentence” look when staff knew I had pancreatic cancer. And the third was that it was difficult to take the doctor’s disapproval. I didn’t have the emotional or physical resources for that at the time, so I just stayed away.
I wish medicine in the US was different, more human and less technological. I wish I could feel that my doctor cared about me as a person – and I’m deeply grateful to all the nurses, and the occasional doctor, who seem to know this intuitively and act in deeply caring and compassionate ways. I wish going to the doctor seemed a little more relaxed and a little less like I was taking up too much of their time. I wish the care of a human being was regarded more as a sacred opportunity rather than another time slot to fill. I wish a lot of things for medicine at this moment in time. Things could be so different. And in all honesty, I have seen a lot of change in medicine in the past 15 years. Still, much is the same. As patients, we have a little bit of control. If some of things that bother me bother you, remember you do have the ability to speak out honestly if you are uncomfortable with your care. The only way things will change is if we insist that change occur. It might not happen for you or me, but if we say these things often enough, change to a more humane quality of care will happen at some point.
I’m adding this at a later date, after my post about my tumor being gone. You know, not one doctor has shown any joy that it is gone, not one doctor has congratulated me, not one doctor has even smiled at me about it. I feel just so dispirited by this and wonder what’s up. Why won’t they give you even a little bit of a “way to go”? I gave a doctor the opening today to talk with me about it. I pointed out to him that there was no sign of tumor. He said, yes I read that. No change of expression. Deadpan. Nada, niente, nichts, nothing. End of discussion. I came out of that office feeling more like a lab rat that has provided mild interest for the doctor’s day than a human being. Wouldn’t you think that it might be at least modestly exciting that a pancreatic tumor has disappeared? Ah well, I rant. It’s just so frustrating because medicine could be so life affirming and instead it is just cold and flat and sterile.
If you are interested in how western medicine could change for the better and would like to read about it, I would recommend Thomas Moore’s Care of the Soul in Medicine. Wish he was designing the medical system we all live with.