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Hope is a tricky thing. On the one hand, false hope can lead patients to opt for painful, futile treatments at the end of life. On the other, unnecessarily bleak outlooks can lead to depression and inaction. When health is at stake, presenting information with the right amount of hope can guide patients away from both suffering needlessly and/or succumbing to treatable disease.
I was reading a sad story about a patient whose physician had made her feel hopeless. She was an elderly widow with some real, but not immediately life-threatening, medical conditions. His attitude led her to believe that she was sick and useless – with little to look forward to but ongoing testing, disease progression and eventual death. His professional opinion held special weight for her, coloring her entire outlook. It wasn’t until a friend reminded her of the doctor’s fallibility that she began to question her diagnoses, treatment options, and even prognosis.
When faced with concerning new medical diagnoses, even the most educated among us tend to imagine the worst case scenario. Knowing this, physicians should take care to offer reassurance and optimism whenever it is warranted. Hope provides the energy to course correct, to fight battles that can be won, and to hold on to trust in a brighter future. Why be stingy with it when it is so easily given?
As a rehab physician I have regularly encountered bias on the part of healthy people in regards to certain injuries. I hear them whisper, “I wouldn’t want to go on living if I couldn’t walk” or “That poor man’s life must be ruined.” And yet, these feelings are not shared by those fighting the battles. In many cases, losing an ability focuses the mind on what’s important – and on all the things that can still be achieved and enjoyed. Life is a gift, and while we all still have breath – we can make meaningful contributions.
It breaks my heart to see patients lose hope, and it is sadder still when physicians facilitate the loss. What we say carries psychological weight, and we should recognize the duty we have to deliver information with kindness and respect – focusing on the possible, dispelling unreasonable fears, and emphasizing that inner peace is attainable no matter the circumstance.
In healthcare we ought to always have hope – not for perfect health, or longer life – but in our ability to overcome obstacles, to make good come from bad, and to have a positive impact on others. The choice to live our best life is ours to make, no matter the disease or condition. Never let a doctor steal your hope, but adopt the rehab mission: to add life to years.
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Most of my patients think about pain medicines in terms of the symptoms they treat. “This is my headache medicine, and this is my arthritis medicine,” they often say. Healthcare providers are more likely to categorize pain medicines by the way they work: some are anti-inflammatory, some affect nerve endings, and others influence how the brain perceives pain. But the truth is that no matter how you classify pain medicines, there is no way to know if they’ll help until you try them for yourself.
Most people don’t realize that pain management is personal. Research is beginning to help us understand why people respond to medicines so differently, and one day we will probably be able to personalize treatment plans more successfully. For now, there are several known genetic reasons why pain medicines are more or less effective for one individual over another. Genes affect:
The number of enzymes that break down medicines and remove them from the body. Some people have larger numbers of these enzymes and therefore require more drug to feel its pain-relieving effects. Others may be strongly affected by even small doses of drug.
Pain medicine receptor variations can make one medicine effective and another (nearly identical medicine) ineffective in relieving pain.
Differences in carrier molecules that transport pain medicine across the blood stream and into the cells that are triggering pain sensations. Some people have fewer carrier molecules to bring the medicine to the site of pain.
The number of “middle man” neurotransmitter molecules that pass along the pain response. Too many of these molecules can reduce drug binding and mute the pain relief effects of some drugs.
When pain is severe, prescription medications may be necessary. However, mild to moderate pain may be effectively managed with over-the-counter (OTC) medicines. I believe in the start low, go slow approach to finding the smallest effective dose of pain medicines. I always recommend that my patients read and follow all the instructions on the Drug Facts labels to make sure that they don’t accidentally overdose on active ingredients.
When I choose a pain reliever with my patients, the first thing I think about is potential side effects. Some medicines (such as non-steroidal anti-inflammatory drugs like ibuprofen and naproxen sodium) can be hard on the stomach lining, or cause bleeding in people who are at risk for it. Other medicines (such as acetaminophen) can harm the liver if used in excess, while prescription pain medicines can cause constipation and drowsiness. The best pain medicine to start with is one that is least likely to cause harm to the specific person.
The next thing I ask is whether or not the medicine has worked for the patient in the past. Previous experience is one of the best indicators of future success. Since I know that my patient has a unique, genetically determined number of enzymes, transporters, and receptors, previous experience with pain medicines will give me a good idea of how well they will tolerate it again, and if it will be effective.
Finally, I consider the type of pain that they are experiencing. If the pain is caused by inflammation (from an injury, surgery, or arthritis) I’ll consider a medicine with primarily anti-inflammatory properties. If the pain is caused by tension (such has headache) or complicated by fever, I may consider acetaminophen first. If the pain is coming from a nerve (such as sciatica or neuropathy) then I’ll use pain medicines that work for nerve pain specifically. If the pain is complicated by depression, I may discuss additional medicines and approaches.
Sometimes, combinations of medicines are significantly more effective than one medicine alone at treating pain (this is why some prescription pain relievers are combinations of an opioid and acetaminophen). When using more than one pain relief medicine, it is important to compare active ingredients in both prescription medications and OTC products to make sure that accidental overdoses do not occur. I also recommend consulting with a healthcare professional if there are concerns about drug interactions or if the patient is already on a significant number of prescription medications that could interact with his or her OTC pain medicine choices.
The bottom line is that science is still catching up to pain management. Perhaps one day a simple blood test will help us to determine the very best pain medicine regimen for a specific patient at a given time. But until then, adopting a strategy of careful trial and error (avoiding unwanted side effects, using the lowest effective doses, and consulting a physician when pain is severe) is the only option. Don’t worry too much about whether a specific medicine is “best” for your pain. Pain management is very personal, so you will need to discover your own best solution.
Disclosure: Dr. Val Jones is a paid consultant for McNeil Consumer Healthcare Division.
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Hospital culture is largely influenced by the relationship between administrative and clinical staff leaders. In the “old days” the clinical staff (and physicians in particular) held most of the sway over patient care. Nowadays, the approach to patient care is significantly constricted by administrative rules, largely created by non-clinicians. An excellent description of what can result (i.e. disenfranchisement of medical staff, burn out, and joyless medical care) is presented by Dr. Robert Khoo at KevinMD.
Interestingly, a few hospitals still maintain a power shift in the other direction – where physicians have a strangle hold on operations, and determine the facility’s ability to make changes. This can lead to its own problems, including unchecked verbal abuse of staff, inability to terminate bad actors, and diverting patients to certain facilities where they receive volume incentive remuneration. Physician greed, as Michael Millenson points out, was a common feature of medical practice pre-1965. And so, when physicians are empowered, they can be as corrupt as the administrations they so commonly despise.
As I travel from hospital to hospital across the United States (see more about my “living la vida locum” here), I often wonder what makes the pleasant places great. I have found that prestige, location, and generous endowments do not correlate with excellent work culture. It is critically important, it seems, to titrate the balance of power between administration and clinical staff carefully – this is a necessary part of hospital excellence, but still not sufficient to insure optimal contentment.
In addition to the right power balance, it has been my experience that hospital culture flows from the personalities of its leaders. Leaders must be carefully curated and maintain their own balance of business savvy and emotional I.Q. Too often I find that leaders lack the finesse required for a caring profession, which then inspires others to follow suit with bad behavior. Unfortunately, the tender hearts required to lead with grace are often put off by the harsh realities of business, and so those who rise to lead may be the ones least capable of creating the kind of work environment that fosters collaboration and kindness. I concur with the recent article in Forbes magazine that argues that poor leaders are often selected based on confidence, not competence.
The very best healthcare facilities have somehow managed to seek out, support and respect leaders with virtuous characters. These people go on to attract others like them. And so a ripple effect begins, eventually culminating in a culture of carefulness and compassion. When you find one of these gems, devote yourself to its success because it may soon be lost in the churn of modern work schedules.
Perhaps your hospital work environment is toxic because people like you are not taking on management responsibilities that can change the culture. Do not shrink from leadership because you’re a kind-hearted individual. You are desperately needed. We require emotionally competent leaders to balance out the financially driven ones. It’s easy to feel helpless in the face of a money-driven, heavily regulated system, but now is not the time to shrink from responsibility.
Be the change you want to see in healthcare.
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In a recent Forbes editorial, conservative commentator John Goodman argues that the Texas Medical Board is sending the state back to “the middle ages” because they are trying to limit the practice of medicine in the absence of a face-to-face, doctor-patient relationship. He believes that telemedicine should have an unfettered role in healthcare – diagnosis and treatment should be available to anyone who wishes to share their medical record with a physician via phone. This improves access, saves money, and is the way of the future, he argues.
He is right that it costs less to call a stranger and receive a prescription via phone than it does to be examined by a physician in an office setting. But he is wrong that this represents quality healthcare. As I wrote in my last blog post, much is learned during the physical exam that you simply cannot ascertain without an in-person encounter. Moreover, if you’ve never met the patient before, it is even more likely that you do not understand the full context of a patient’s complaint. Access to their medical records can be helpful, but only so much as the records are thorough and easy to navigate. As the saying goes: garbage in, garbage out. And with EMRs these days, auto-populated data and carry-forward errors may form the bulk of the “narrative.”
Telemedicine works beautifully as an extension of a previously established relationship. Expanding a physician’s ability to connect with his/her patients remotely, saves money and improves access. But bypassing the personal knowledge piece assures lower quality care.
I currently see patients in the hospital setting. I run a busy consult service in several hospital systems, and I have access to a large number of medical records, test results, and expert analyses for each patient I meet. Out of curiosity, I’ve been tracking how my treatment plans change before and after I meet the patient. I read as much as possible in the medical record prior to my encounter, and ask myself what I expect to find and what I plan to do. When medical students are with me, we discuss this together – so that our time with the patient is focused on filling in our knowledge gaps.
After years of pre and post meeting analysis, I would say that 25% of my encounters result in a major treatment plan change, and 33% result in small but significant changes. Nearly 100% result in record clarifications or tweaks to my orders. That means that in roughly 1 in 4 cases, the patient’s chief complaint or diagnosis wasn’t what I expected, based on the medical record and consult request that I received from my peers.
If my educated presumptions (in an ideal setting for minimizing error) are wrong 25% of the time, what does this mean for telemedicine? The patient may believe that they need a simple renewal of their dizziness medicine, for example, but in reality they may be having heart problems, internal bleeding, or a dangerous infection. Let’s say for the sake of argument that the patient is correct about their needs up to 75% of the time. Are we comfortable with a >25% error rate in healthcare practiced between strangers?
Goodman’s cynical view of the Texas Medical Board’s blocking of telemedicine businesses for the sake of preserving member income does not tell the whole story. I myself have no dog in this fight, but would side with Texas on this one – because patients’ lives matter. We must find ways to expand physician reach without eroding the personal relationship that makes diagnosis and treatment more customized and accurate. Texas is not returning healthcare “to the middle ages” but bringing it forward to the modern age of personalized medicine. Telemedicine is the right platform for connecting known parties, but if the two are strangers – it’s like using Facebook without access to friends and family. An unsatisfying, and occasionally dangerous, proposition.
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Popular TV doctor, Gregory House’s favorite adage about patients is: “everybody lies.” I used to believe that this was a cynical and inaccurate statement, but I had to revisit it recently when faced with a patient whose signs and symptoms were consistent with a diagnosis that she vehemently denied.
A young woman was admitted to my rehab unit with brain damage of unclear cause. She adamantly denied drug or alcohol use, and I couldn’t help but wonder if she was suffering from a genetic or autoimmune disorder that the academic neurology team had somehow overlooked. I had recently read the New York Times best-seller, Brain on Fire and feared that I would be like one of those dismissive physicians who missed the author’s unusual diagnosis and nearly killed her from their inaction.
But staring me in the face were the specific physical manifestations of drug and alcohol abuse, though her urine toxicology screen proved she hadn’t used in the very recent past. I asked her again and again if she recalled any exposure to them – probing for an admission of even a small amount of recreational use. She remained adamant. An exhaustive work up had in fact revealed some vitamin deficiencies, the only hard evidence of anything that could explain her very real and devastating impairments. This was not a case of faking symptoms – at least I was sure of that much. Yet her situation continued to haunt me, because until she came clean about the cause of her condition, lingering doubt would drive me to continue the “million dollar work up.”
And for this young and desperately lonely person, the “million dollar work up” may have been her only chance at experiencing ongoing concern for her well being from others. If she admitted to drug use, then the only people who seemed to care about her (sadly, even if it was mostly because she could make a “great case for Grand Rounds”) would probably turn their backs. With the mystery solved, this fascinating neurological conundrum would become a garden variety drug abuser. A person who was, perhaps, not so much a victim as a perpetrator of their own condition.
I don’t believe that those whose conditions are contributed to by their behaviors receive poorer medical care (consider the smoker with lung cancer, or the person with multiple fractures from a bridge-jump suicide attempt – their quality of care will be similar to non-smokers with lung cancer or people with orthopedic needs from a motor vehicle accident). But there may be a subtle and unspoken judgmental attitude held by some of their caregivers and providers.
Fellow friend and blogger, Kerri Morrone Sparling suggests that fear of judgment, and the guilt and shame associated with self-induced harm, are the main reasons why people with diabetes may not come clean to their endocrinologists about their eating and exercise habits. She writes,
Finding enough confidence in myself to admit my shortcomings to my doctor, who I aim to impress with my efforts, was a tall order. For me, it took finding an endocrinologist I trusted with the truth, including the parts of the truth that weren’t so pretty. I know the best doctor for me is one who cares about my emotional response to diabetes, as well as my physical response. It took some trial-and-error, but eventually I found an endo who I felt didn’t judge, but listened and helped me find reasonable solutions to my problems with “reasonable” defined as something I would actually follow through on. Instead of a blanket response of “Do everything. Try harder,” my endo helps me build off of small successes in pursuit of better outcomes.
So patients lie to their doctors because they don’t want to be abandoned, judged, or shamed. And until they are quite certain that this will not happen to them, they are likely to continue withholding information from those who are ostensibly trying to help. The problem of lying does not rest squarely on the shoulders of patients – it is also the responsibility of physicians to make it safe for them to tell the truth. They will commit to honesty when we commit to compassion.
As I look back at my interactions with the young woman with the “mystery” illness, it is not so much the fear of missing the right diagnosis that haunts me now. It is that I did not make her feel safe enough to tell me the truth. In the end, the “million dollar work up” offered her little value for the cost and used up precious healthcare resources.
What she needed was a safe place to live, a supportive environment, a program for drug counseling, and job training for those with disabilities. I missed out on really helping this patient because I was more comfortable with searching for a rare diagnosis than pursuing treatment for the all-too-common, nebulous cycle of social ills that poverty, drugs and abuse cause. Maybe I wanted to believe her lie because at least then there was a chance I could fix her?
As it turns out, I was as invested in her lie as she was – we just had different reasons for it. While she did not want to be abandoned or shamed, I did not want to have to face the fact that I had very little to offer her.
Dr. House was right – under certain circumstances, patients are likely to lie. The other side of the coin, though rarely discussed, is that sometimes doctors are complicit in keeping those lies going.