The "Difficult Patient"
Today it’s hard to find a health care professional who doesn’t want to “put the patient first,” practice “patient centered care,” or make the patient “part, or even the center, of the healthcare team.” Bring up current problems with clinical practice (be they managerial, insurance company, or regulatory) and you will inevitably hear health care professionals talk about the importance of the doctor/patient, nurse/patient relationship.
Nurses, in particular, are adamant that they are members of THE Caring Profession and that their fundamental role is to be THE patient advocate. (This formulation does nothing enhance teamwork since it drives physicians, PTS, OTs and other non- RNs crazy. “What does that make me?” they may retort, “The patient’s enemy?”) Patient-centeredness, and the sanctity of the patient/clinician relationship is the talk everyone is talking.
When you start actually probing and physicians and nurses (as well as others in health care) describe the real life patient (rather than the patient as abstraction), things start to get a bit more complicated. It’s amazing how quickly so many of these patients – who were absolutely revered a few minutes earlier — suddenly become “difficult,” when clinicians start discussing actual patient encounters.
A couple of months ago, I was talking to a nurse at a major American teaching hospital. She began to describe a “difficult” patient and the patient’s even more “difficult” family. The patient was a young woman who was engaged to be married when she had developed a serious health problem. She had to have surgery and now found herself in the hospital, in pain, constipated, her life plans on hold. She was, according to the nurse, “not responding well” and her family was equally problematic – calling the nurse manager, complaining about everything. When the nurse manager gave her her patient assignment, she was warned that she would be dealing with a very “difficult” patient and family. The RN gritted her teeth and went in to assess the young woman. The woman was upset because she had to have an enema, which she’d never had to have in her life. The patient was distraught about her condition, when, in fact, the RN said, the patient was so much better off than almost any other patient on the floor. The RN expressed her irritation about how “difficult” the patient was (her words not mine).
Nonetheless, she exercised professional discipline and tried to reassure the young woman about the enema, her recovery, and her future. By the end of the day, the family was reassured and had ceased complaining and everyone – including the manager – complimented the nurse on the good care she had given.
What surprised me about this discussion was how little sympathy the nurse expressed toward the patient and how easily the manager and then the nurse had categorized her as “difficult.” Since I could totally relate to the young woman’s anxiety and dismay, I actually found it a bit scary to think about the reaction her plight elicited.
This happens very often when I talk to nurses, doctors, and other health care professionals. I was recently talking to a young Canadian who’s just gotten a nursing job after graduation. Once again, the nurse lamented the fact that so many patients are so “difficult.” “You cannot imagine what these patients are like,” the nurse said,” always on the bell, always demanding. They just expect you to be there to take care of their every need.” This nurse is not a callous human being. Yet, it only took a few months post graduation for the RN to develop a definition of “the difficult patient” that goes way beyond what non-healthcare professionals would expect it to be.
I talk to ER docs, or surgeons, or even internists and get the same thing. “You see a patient whose chart is the size of a dictionary, and you run in the other direction,” one internist told me recently. (I cringed when I heard this. What happens when I’m 80 and my medical chart is as thick as my wrinkles are deeply etched?) Another ER doc (like so many ER nurses) complained about all the “frequent flyers” coming to his institution. (A “frequent flyer” is what you get called if you have mental or a chronic illness and have repeat visits to the ER). Among themselves, nurses, doctors, social workers – you name it – speak in very derogatory tones about patients who have mental or so-called psychosomatic illnesses. This in spite of the fact that many, when talking about patients publicly, acknowledge that every illness has a mental, pscyho-social component. The mentally ill come in for particular derision, even though people are talking about patients who have an “Illness” or “disease,” and who are not deliberately play-acting.
Most non HCPs (healthcare professionals) would heartily agree that screaming, shouting, punching, constantly complaining when there is, really, not much to complain about constitutes being “difficult.” The descriptor “difficult,” however, is not attached only to this kind of patient but to anyone who mpves out of the narrow bandwidth of what seems to be “the good patient.”
To me and many other patients or would be patients, it’s pretty frightening to learn how quickly HCPS can go from loving us in the abstract to describing us as the medical equivalent of cop-show “perps” or “unsubs.” It doesn’t seem to take much to become a “difficult patient.” All you seem to have to do is be anxious, upset, frightened, worried, terrified at being in an alien land – i.e. a hospital – and not keep it to yourself. Ask a few questions when the nurse or doc is busy. Ring the call bell more than once because illness has reduced you to the status of an infant who can’t do anything for herself. Express a slight doubt about treatment. Have a question. Doubt a treatment recommendation. Come into the office, ER or hospital frequently because you have a chronic illness and pouf, you have become “difficult.”
Reading this, many HCPs might respond that they describe patients as “difficult” because they are tired and overworked and, after eight or ten hours on the job –totally fried. Many insist that, in spite of this, they don’t let their innermost thoughts show and are outwardly caring and sympathetic to their patients – even the ones who kick and scream and punch. I am sure that is true.
We now know a lot about the phenomenon of framing– how we think about things and interpret them – and how framing affects our behavior. Research on how the brain works also tells us that we are notoriously poor judges of ourselves and our own behavior. Read Daniel Kahneman’s book Thinking Fast and Slow (about how the brain works) and you’ll discover that a stranger on the street is sometimes a better judge of how we come off than we are ourselves. Well-intentioned as they may be, many health care professionals convey what their feelings about “difficult” patients to those patients.
Whether they intend to do it or not, they are “framing” the patient to themselves and others they work with in a way that colors how others view and then treat that patient. (Just say the word “difficult patient” to yourself and imagine how you would respond to that person. See how your stomach clenches, your blood pressure rises, and your minds races to the most negative images). It’s because how we frame things is so important to how we behave that this issue is so important. Many HCPS, it has been documented, clearly convey their negative feelings about the “difficult patient” in the broader culture as well as to patients, which is why Dominck Frosch’s recent study in Health Affairs documented that so many patients are terrified of even asking a single question to the doctors and nurses. They are afraid to participate in – or question – decisions about their care for fear of being labeled “ a difficult patient.” (Read Chloe Atkins book My Imaginary Illness, to learn more about the consequences of this labeling).
What can be done about this? Well many people smarter than I am have been thinking about this problem and making recommendations. The Gordon and Betty Moore Foundation, for example, has just engaged Frosch as a fellow who will help advance their efforts to encourage patient and family engagement and he has lots of ideas about how to help patients navigate this negative framing.
That said, I want, in this and future blog posts to offer some ideas and suggestions of my own. The other day, for example, I was talking with my friend Sioban Nelson, Dean of the Faculty of Nursing at the University of Toronto. We were discussing the problem of “the difficult” patient, and Sioban mentioned what it is like to take care of patients with whom you have difficulties. Wow, I thought, that is a very interesting reframing of the problem. Rather than the patient being “difficult” why not think of the problem in terms of “difficulties” that one has, as a professional, with the patient (as in, I am have difficulties dealing with this particular patient). This reframing changes everything. Instead of making the patient the problem, the issue is one’s own difficulty dealing with the patient. This makes it possible to search for options, alternatives, and solutions to those “difficulties.” Conceptualizing the patient as difficult, on the other hand, tends to make it very hard to imagine options, alternatives, and solutions, since the problem becomes turning a “difficult” person into an easy one.
I think the big problem is time. When hospitals have cut nursing staff to the bone and doctors are expected to see one patient every 15 minutes they simply do not have time to treat patients compassionately and deal with totally normal questions and requests. I deal with “difficult” clients in a different profession, and almost every one of them is not particularly difficult if you take the time to hear them out and make sure they understand their circumstances and your recommendations. HCPs have difficulty doing their jobs in the current billing climate, which makes every additional patient request above the “standard” difficult to accommodate. I imagine if they felt they had more time these patient concerns would not be so difficult to deal with.
I have a few comments …
As health care providers, we don’t do well to bury our feelings about patients. We are not saints, or Mother Theresa, or the Dalai Lama. We will not love everyone. We have to compensate for our less-than-perfect emotions. Denying those emotions will do us no good. We must acknowledge them through introspection and move beyond them.
Second, sometimes the patient is in fact empirically difficult. The sociopath prisoner, as an example. The extremely personality disordered individual who makes a career out of creating arguments between health care professionals.
Another thing you’re feeling when you consider the “difficult patient” label is just the difficulty of getting all the health care work done in the time provided. I have an internal medicine practice, and almost every single patient who comes in the door could benefit from an hour of my time. But based on the economics, you have to see at least three people an hour to keep the office open. So when you face some annoyance from a provider for asking too many questions, it’s economics and it’s all the other patients waiting for the provider in the next rooms.
Please don’t grudge the medical community its subculture.
I cringe reading this. I’ve seen the reports from my private insurance company that show what was paid to my daughter’s numerous physician’s. My daughter was in the hospital for 95 days (in what should have been a 7 day stay). Because of the hospital’s errors (which likely were due to rushing through a procedure), her stay was longer, she went through her own personal hell, and after 95 days, she passed away. I asked a lot of questions and argued when they seemed to guess at how to handle a problem. Although they would look at me and say “we love parents to be pro-active and a part of our team”, I sensed their disapproval. Their way of dealing with the problem became so predictable that I literally could tell them what their plan was for her that day. *** To be clear, they would give her fluid one day (because she was “dry” and her heart rate would increase) only to give her medication the next to dry her out. Then she’d be “too dry” and require boluses of fluid…. (you get the picture) over and over for several weeks. I finally asked why they didn’t cut down the amount of either fluid or medication to get a balance so that this cycle could stop…. They “were following procedure”. “Procedure” clearly wasn’t working! Our Cardiologist and heart surgeon took all the time we needed to answer questions and explain things but they weren’t there for the hands on everyday care…. But the Hospital Doctors and Nurses were ridiculous! My daughter was in the PICU and had one nurse assigned to only her every 12 hours…. if the nurse had no other patients, why is it that she couldn’t take the time to explain things or answer questions? I understand the rare examples you mentioned, but this problem happens so often that those examples are rare.
As a healthcare professional, I would guess you got into the profession because you wanted to help people (or I would hope!). If you have lost that desire and cannot hide this from your patients, then you need to step back. I pay a substantial amount for my family to have quality medical insurance. I believe they deserve caring, understanding and professional healthcare. If our physician’s weren’t providing that, I would change physicians. There is no excuse for a physician to ever make a patient feel their concerns aren’t important.
The group asking patients to consider the plight of caregivers who are faced with difficult, or even sociopathic, patients, create such labels for patients who ask them to consider the plight of patients dealing with difficult or sociopathic caregivers. Which is in a plight that is more dire? And more unacknowledged? The one for whom the problem makes work a trial. Or the other for whom the problem can lead to bankruptcy, disability and even death.
When a caregiver injures a patient one of the knee-jerk responses is to label the patient as “difficult” or a “crank” to make sure no one listens to that patient. And that works. No one does. That can drive a patient off the deep end.
Caregivers have a conflict of interest that prevents them from appreciating some of the biggest problems for patients while asking patients to be more understanding of how difficult it is to be a caregiver.
I completely agree, however, the patient is also under a great deal of time restraints. They are having “idiopathic” symptoms until a physician, in the field they are having issues in, runs the right test, determines there is a cause, and actually agrees to relate it to the POSSIBILITY, that they do in fact have reasons to be concerned anout the problems they are having and have finally gotten a degree of attention from the last resort choice. The reason it’s a last resort is because,while primary care probably started them on a regiment of antidepressants that do nothing good,possibly sentpd them for blood work, all standard, maybe a rhemotologist, maybe finding a bit of an issue, treating it and problems persist,maybe even escalate.
The primary care physician’s role is to get you to the right place to diagnose the actual problem. The patient has issues that take an extensive amount of time to get to the correct field. They may even have many proven, measurable issues and after being a psychiatric patient, treated as though they are not even seen in some mental institutions, havig experienced side effects from treatment while their problems persist and get worse. Asking for a patient advocate does no good.
Maybe there should be some type of employee that spends the hour with the patient after the exam, to summarize all of the things that led to the patient coming to that particular specialist in the first place, actually LOOKING at their lab work, treatment history,x-rays, other findings from other fields of medicine and address the concerns for the patient that also feels rushed and unprepared to ask a follow up question when a STANDARD answer gets received. Another thing that should exist is a board of physicians that work at insurance companies to consult with patients on the directions they can go. Years pass and countless tests could be avoided if an intigrative look at their collective results, possibilities and gut feelings
Maybe many patients “read an article”, but I’m here to tell you, some of us have put hundreds, maybe thousands of hours into getting to the actual possibilities of what it could be. Many of us are laying on our backs, reading medical journals, clinical trials even in other countries, trudging along afraid to be persistent in our care.
I believe the patient that doesn’t do this, ends up dead and the patient that gets the right test and right diagnosis lives. The human spirit is strong but patients have been beaten down. Maybe the difficult yet persistent could actually be more informed than expected. This specialized approach isn good for people with crossover issues. Know that we feel we are fighting for our quality of life. If I’m not going to have that, I prefer death in a faster, less suffering way. Just tell us you find us unreasonable so we can go try to get into guinea pig program (which is also difficult). Please dom’t disrespect us or be condesending because we dont have a medical degree. I admit that I’m not a person that suffers quietly because I prefer to find the most base problem that led to the rest of them.
Also, I am finding that psychitrists edit their records before giving them to patients. Orthopedics cover up for each other and don’t want to address previous hardware unless we catch them offguard with a difficult question. I get it, but i would never try to sue someone that made a human error, however a discovery of a coverup is more than fair game. Totally doing the minimum only leads to more misery and the wrong treatment. It’s a sore subject. I know physicians have a hard road to tow but there must be a better way to come together objectively while not costing them their business as a patient’s only real recourse. Lawsuits aren’t really worth it and most of us will be thankful just to have a less painful life. Rant over. My head hurts.
Last point…I have had a few tremondously good physicians plugging away at my issues, an incredible primary care physician, wonderful nurses, kind staff, but when something goes awry, guess who gets the attentikn and energy. Please help us to help you. Im not at the dr for a hangnail.
Suzanne, you are so right! And, thank you for writing this. I have been in healthcare for 40 + years, and a healthcare risk manager for 30. Labeling a patient is as wrong as labeling a child with disabilities to limit or confine them to a level of care that fits the provider’s bias. As a patient I am never embarrassed to ask questions of my healthcare team. If they haven’t been trained in crisis management or how to handle their clients with the aplomb of a true professional, then they don’t belong in a position that deals with people face to face, let alone people who are frightened & concerned with their health and future well being. Leave the profession and go into computer consultation via phone. When I sense my healthcare team member(s) are labeling me as “difficult” I quickly ask them, “are you going to put me on your bad patient list”? That usually brings them back to the reality of what they’re there for, and allows us to move on in a more professional exchange, removing those biases, even for the short term.
I think if you talked to anyone who deals with the public, be it nurse, doctor, receptionist, waiter, teacher, professional or nonprofessional, you would get the same story. It’s miraculous how the few are taken out of context to put forward biased opinions. Yes there are difficult patients. There are also ones who we cry with and care for no matter what, difficult or not
I think this is certainly a problem when dealing with the public. A waiter, however, or teacher is not dealing with sick and suffering people. I am sorry you think this is biased, as it sounds like you do. Even if you believe that the stories I recount are taken from the few and out of context, we need to learn from those supposed few. Sadly, the studies show that not so few people actually feel this way. It would be great to learn from this critique rather than simply swipe it away like an irritating fly.
Whoever wrote this has obviously never worked in a hospital. We have many many “frequent flyers” who are most definitely NOT difficult patients. They are kind, grateful, and we’re even happy to see them. We wish it were under different circumstances, but we don’t cringe when their names pop up on our census. *however* we DO have difficult patients. Frequen flyer or no, some people just absolutely forget that we ARE PEOPLE TOO. They scream and cry and report us to our bosses for not bringing them an ice cream in 14 seconds because we have a code going on in the next room. They appeal their discharges because being waited on hand and foot is an experience they are not willing to give up. They crimp off their IV tubing or set off their alarms so we have to come running. Just because they feel like they haven’t gotten enough attention in the last 14 seconds. I’m more than willing to take you to the bathroom every 20 minutes, go out of my way to wash your hair, even braid it for you, if you can be so kind as to give me a thank you. And treat me as an equal an not like a slave. But I guarantee you, no matter how difficult you are, we do it all with a smile. And a kind word, because we Do care. No one could last more than a month in this job if we didnt.