Doctor-patient relationship

Navigating the Doctor Patient Relationship When Tensions Fly

2439 views

Recently, I was contacted by a patient who raises a good point that I have been pondering awhile – doctors becoming angry at patients. In this case, the patient was asking questions about the advisability of working with the utero-sacral ligaments and pelvic floor support when her he blew up at her. This is not the first time we have had reports of a specialist unloading on a patient. It’s hard to say why these things happen, every case is different, but in my 52 years as a nurse I have some thoughts.

In the past patients accepted blindly what doctors said and offered. For many this worked out OK. They did, after all, know more than we on any given subject. And for doctors this was the most efficient way.

In endometriosis, with less than 100 doctors doing effective surgery, the ‘doctor as expert’ model has not worked out so well. So part of the endometriosis awareness process has been to educate women with as much information as we know and understand about endometriosis. This leads to informed patients who want to fully understand everything that is being recommended or discussed; patients who now understand why so many of their treatments in the past have failed.

To the doctor who truly is an expert, he or she is comfortable with their knowledge base. For some physicians, however, particularly those who are not well versed in endometriosis, questions can be taken as affronts even when posed in the nicest way. The reaction can be surprising to the patients because they are trying to become more educated, to understand fully so as to avoid the revolving operating room door of one ineffective surgery after another.

What to Do When the Doctor Patient Relationship Sours

While most of the experts do not have issues with interactions, occasionally they do go south. We always have had to walk the fine line between ego and skill with doctors. Not all doctors are like this, but ask any nurse who has been in the field for a number of years, and you will find that some are. Here nurses can be allies. Over the years the nurse doctor relationship has improved for the most part and physicians have come to see nurses as assets, as opposed to subservient workers. I suspect we will see the same evolution between educated patients and doctors as time goes on. Even now, I run into doctors who appreciate patients coming to the office with a better understanding of their disorders, as it saves time and makes treatment and patient education needs easier. So if you are having difficulty with a doctor, if you have questions that are not being addressed, ask the nurse as she often has the doctors ear and can be helpful.  Not all doctors offices employ nurses though so ask to be sure.

Dr. Google Evoking Tensions within the Doctor Patient Relationship

Sometimes the information on message boards and other internet groups is incorrect. This can be frustrating for the physician and confusing for the patient, particularly when the situation is not handled appropriately. In these cases, it is a good idea to check with the nurse, perhaps review the information and even get a second opinion for clarity. As someone who works online to educate patients, I understand sometimes our information is incorrect. In our case, we have been fortunate to have some physicians, who are willing to sort out our misinformation and correct our teachings. To the extent we may have a role in the misunderstandings between patients and doctors, then I apologize.

What I won’t apologize for, is helping women and their families understand why things have not worked in the past and what to avoid for the future leads to better care. That means for endometriosis care and education we are looking for doctors who are committed to excision of disease, who can help patients in one or two surgeries, who do not feel the need to use GnRH agonists or other medical therapy (which has never been shown to TREAT endometriosis but may quiet symptoms temporarily). True experts in excision have had long-lasting relief for their patients in one or two surgeries, and will only use drug therapy post op to stop periods where the uterus is quite painful and the patient wants to keep it.  Then, with periods suppressed a patient may well be able to keep her uterus and have less pain until conception or until she reaches menopause.

The Second Opinion

In reality, a good doctor will welcome your questions.  If you are running into resistance then it might be time to seek the opinion of another specialist.  Sometimes it is a simple matter of personality differences and no matter what you do, things will not improve. It is OK to move on if you are not comfortable.

This article was published originally on Hormones Matter in March 2014

We Need Your Help

Hormones Matter needs funding now. Our research funding was cut recently and because of our commitment to independent health research and journalism unbiased by commercial interests we allow minimal advertising on the site. That means all funding must come from you, our readers. Don’t let Hormones Matter die.

Yes, I’d like to support Hormones Matter.

Listening to Patients – A New Opportunity for Medical Science

3493 views

Over the last several weeks I have been struck by the growing chasms in modern medicine. I see battles between physicians and patients, physicians and technology, physicians and bureaucracy and between the entire healthcare industry and health itself. The chasms are particularly deep in women’s health where so often serious health issues are written off as psychosomatic or with medication safety and efficacy where obvious side-effects are routinely discounted as not possible despite clinical and biochemical evidence to the contrary. Why is the physician not listening to patients? Why is he so quick to discount their suffering and attribute it elsewhere?

And then it occurred to me, within the doctor-patient relationship there has never been an impetus for the physician to listen to patients. The structure of modern medicine was built upon a presumption of physician authority and expertise that involved not listening but seeing. So what began as a post about listening to patients versus patient engagement (what the heck does patient engagement mean anyway), has evolved into a commentary on the eroding power of the physician and medical science in modern healthcare. Interestingly enough, I think the changes in modern medicine may finally permit, if not demand, listening to patients. Let me explain.

Listening to Patients: A Lost Art that Never Was

Historically, listening to patients has had, at best, a tenuous position in medicine. Some would argue that it was supplanted long ago by the physician’s all-knowing clinical gaze. The clinical gaze, a term used by French philosopher, Michel Foucault, is the ability to see correctly what is unseen, to bring to light and then describe the hidden truth of disease. It was what allowed the physician to penetrate the illusions of the non-scientific engendered by previous generations (16th – 18th century medicine) and to see the truth of the disease by correctly perceiving the signs and symptoms. The physician’s power of observation, his clinical gaze, aided by technology, gave him a vantage point inaccessible by mere mortals, and thus, incontrovertible.

The clinical gaze anchored modern medicine in a way that no other concept could. It brought with it the power to see truth, but also, to define it. No matter how potentially relevant to disease diagnosis, the patient’s truth or story could never replace the physician’s truth – the truth that was accessible only by him and through the all-knowing clinical gaze.

And so it was for most of the last century and a half, the physician was the arbiter of what was valid, of what could be seen and of what could be known about health and disease.  The patient was no more than a body; living or dead, it did not matter. It was the job of the physician to perceive correctly what the body (not necessarily the patient) was showing him and then classify, communicate, and finally, treat appropriately.

From Medicine to Healthcare and the Physician’s Diminishing Autonomy

Despite the inherent tension between the patient’s experience of his or her disease and the physician’s discovery and classification of that disease, the interaction was private, between the physician and the patient. The degree to which the physician listened or did not listen to the patient, the correctness of the physician’s diagnosis and subsequent treatment decisions occurred within the confines of his practice. So long as the interaction was private, the physician remained the arbiter of disease; the clinical gaze his power and the patient his subject.

When the private became public, gradually at first (third party payer systems, pharmaceutical marketing) and then explosively, (the Internet), the clinical gaze, the lens through which disease was defined, refocused away from the patient and the disease itself and toward the economics.

The Interlopers

Managed care and third party payer systems unlocked the sacred space between the physician and the patient. The economics of his treatment decisions increasingly bore more weight than the accuracy or the clinical outcomes. The economic principles of the new managed care systems were skewed divergently. On the one hand, managed care demanded efficiencies of scale in the allotment of care – more patients, less time – but on the other hand, and simultaneously, rewarded physicians and other healthcare providers with fees for services instead of positive outcomes efficiently managed. The macroeconomic principles guiding healthcare decision-making, skewed and untenable as they were, gave the physician a modicum of authority. Even though managed care infiltrated every aspect of the doctor-patient relationship, it was still the physician who defined the disease. The clinical gaze remained somewhat intact.

That was until the pharmaceutical industry caught on and the definition of disease not only miraculously began to fit the latest, greatest drug, but also fit managed care payer guidelines. Some would argue that late 20th century diseases and discovery emerged, not from the plight of human suffering, and certainly not from the powers of observation that once guided the physician’s clinical gaze, but by profit.

The physician, who at once held the power to see and define medical science, is now buried beneath a heap of competing and conflicting interests that are only cursorily related to the practice of medicine. There is no clinical gaze; no medical decision-making that rests solely upon his shoulders or within the space of the doctor-patient encounter.

And Then Came the Internet

The same technological advancements of the latter half of the 20th century that allowed the physician to see more, also allowed others to see what he was seeing and to communicate those insights broadly. Once that private and controlled perception became public, the physician and the all-knowing clinical gaze, no longer wielded the same power it once did.

The primacy and indeed the privacy of what was once a sacred relationship between the doctor and the patient, was overrun by a ‘system’ of disease economics; one that no longer can be considered medicine, healthcare or even what those in those in anti-modern medicine movement call disease care. Instead, we have a ‘health’ economics built on a false precipice of industrialized, factory, efficiency and underlain with a bastardized model of free market capitalism – moral hazard. Indeed, the creative billing seen in the healthcare industry makes the financial derivatives scandals of recent history look downright tame by comparison.

Business Innovation Disguised as Medical Innovation

Nowhere in the current model is there room for listening to patients, for relationship, for health, for ethics or even for medicine itself. Arguably, the possibility for medical discovery, the kind that breaks paradigms and catapults the science forward, is also stifled in favor high profit blockbusters that are no more effective than the last one, gadgets that often fail to deliver measurable improvements in care but sure are fun to play with, and ever intrusive services that make healthcare more cost-effective – well, not really.

Business innovations designed to enhance spread sheets and enhance patient engagement do neither. Indeed, patient engagement is no more than a meaningless euphemism for medication compliance. If we can only engage the patient more effectively through this application or that, then we will ________ (insert promise), save healthcare, reduce costs, reduce hospital visits, save time. What patient engagement applications are really promising is to save the world from the pitifully unengaged or disengaged, burdensome, non-compliant patient. There is no doctor-patient relationship and can be no relationship within this model. Both the doctor and the patient are cogs.

From this perspective, it is no wonder that physicians lash out against patient empowerment, against electronic health records and other healthcare innovation.  Each is a very real threat to an already diminished autonomy.

From Healthcare Back to Medicine: Listening to Patients Revisited

In spite of all the negatives of the entrenched medical-industrial complex (I hate that phrase, but it seems appropriate), there is hope. It rests not with ‘healthcare innovation’ that inevitably promises high returns, nor does it rest with the next great blockbuster drug. Rather, the survival of medical science rests within the space of the doctor-patient relationship. It is there, that when disengaged from the multitudes of competing interests, within that private moment, that the physician can unlock the next phase of medicine, the next great discoveries. It is there that he can listen to his patients.

The Necessary End of the Clinical Gaze

The clinical gaze as a power structure served its purpose in catapulting medicine from mystery and myth, but it was one-sided. It considered disease from an idiosyncratic lens solely within the physician’s control. This was both its strength and its downfall. Without feedback or resistance, it was easy for managed care and the pharmaceutical industry to invade this space and usurp the physician’s authority. All that was necessary was to learn the taxonomies and then redefine them to fit the economic needs of the vendors. New diseases, new drugs were viewed as medical advancements. Technology that standardized diagnostic criteria (or arguably loosened it so that most conditions would fit easily within many payer accepted categories), all but eliminated the need for the physician’s skills.

Had the internet not come along and opened the communication channels among patients, no one would be the wiser. With the internet, patients have become empowered and are rather loudly proclaiming their stake in this conversation. Patients search Dr. Google for diagnostic and treatment options, some sound, some not. They have formed groups and societies geared toward furthering education, research and strengthening their voices. Physicians have hereto ignored or chastised patients, lashing out against their new found empowerment, as if it were the patients and not the industry vendors, who displaced his vaulted position and redefined his diagnostic capabilities. No, it was not the patients who did this, but it is the patients who offer the physician a way back towards medical science – not the all-knowing, indisputable medical science of yesteryear, but the dynamic relational medical science of the next generation.

Listening to Patients as a Way Forward

Listening to patients provides the context and connections that can move medicine beyond an outdated and thoroughly usurped taxonomy of signs and symptoms that serves only to name and to limit or contain disease within an appropriately defined diagnostic category, to a space that can connect the larger patterns and the associations among diseases, health and environment. Physicians can lead this charge but only if and when they begin listening to their patients. It is the patients, not the industry, that hold the keys to the myriad of intractable diseases that plague modernity. Listening to patients, not patient engagement, but listening and trusting the truth of the patient’s experience of his or her disease, is the missing piece of the next great medical revolution.

This article was published previously in May 2013.