Lost to Follow-up

Patients report they don't know what they are supposed to do 40% of the time they leave the clinic or office setting. Providers use big $25 words and important-sounding lingo that only causes more confusion. Providers can be terrible in communicating the plan but patients don't feel empowered to push back to clarify either. We fail our patients if they aren't on the same page. Ultimately, patients and providers alike suffer from poor communication. The proverbial dropped balls lead to the classic line: "lost to follow-up."

I have a sign above my door stating the following:
"WARNING: This doorframe has a mind erasing forcefield. Please ensure you have a Patient Plan upon checkout."

Our clinic and organization as a whole has a requirement that every patient leaving our facility receives what is called the Patient Plan. This simple document includes the reasons you came to visit and the various diagnosis codes associated with our discussions. Each clinical problem ideally includes basic instructions and "homework" for the patient to review as applicable. It also includes a list of active medications for future reference. Of note, the patient can also opt for an electronic version sent to their patient portal but the principal is the same. The patient has ownership of the instructions on their way out the door.

Granted, the quality of this document is only commensurate with the amount of effort exerted by the provider at the point of care, but it's a great way to document, ideally in plain words, what the expectations are for the patient and provider alike. These are, in essence, the "doctor's orders."

We spend an inordinate amount of time combing through reports called orders management. Our support staff is charged with sending out results, making phone calls and, for patient safety, quality and prevention, recalling patients who haven't accomplished their tasks. If you have undergone a diagnostic test or a lab draw, you deserve to know the results and their corresponding interpretation. If a referral has been recommended for a specialty consultation and you haven't heard back on how to schedule, you should contact your provider's office. If you aren't going to follow through with a recommendation for a test or referral, it's your responsibility too. Let us know why you don't think you need a medication, test or referral anymore; you may be wrong or you may be right but at least let us know! All of us have examples of patients delaying their care and suffering the consequences.

I implore you, as a patient... DON'T get lost to follow-up.

Be yourself / Provider / Honor your values

After a fairly heated but insightful discussion about preventive medicine, one of my mentors stated that a belief system (based, of course, on values) shapes the very lens by which you view the world and how you allocate resources. He noted that we could spend $100,000 per quality-adjusted life year (QALY) saved on a screening test, immunize a few hundred children, or decide, instead, to put up more roadside barriers or rumble strips on the freeway. I have known and accepted this concept for the purposes of political or social priorities but I had not applied the same principle towards the medical model.

Societal values shape the very means by which we celebrate the good catches (high sensitivity), malign the misses (poor specificity), or find a balance with how we spend our time and effort. Personal values shape the day-to-day decisions as well. 

Take care / Patient / Define health for yourself

The greatest foible I have seen from the medical community is to set forth the expectation that our patients will follow our advice based primarily on our authority and expertise while we disregard their values and expectations. We attempt to define health on behalf of our patients instead of allowing them to find and define it for themselves. Unless there is an overt threat to public health, our culture honors a laissez faire approach to honoring personal health choices and their consequences so it’s up to the patient to ultimately set their goals.

The healthiest person I have ever taken care of is a 92 year old lady who presented to me mid-summer for a follow-up visit. She had been in the hospital for a worsening episode of congestive heart failure (CHF) and her regular primary care provider was not available to see her post-discharge. I was the proxy doc for the day which happens in a busy practice with multiple partners and schedules. I didn’t have rapport with her nor did I know what her normal looked like but she needed to be seen. These visits can be some of the most challenging because each physician still has their own style and approach. In addition, a patient that looks terrible to the patient-naive physician actually looks better according to their more familiar provider.

Although I had never met her before, it was clear that something else was transpiring inside her frail body. She didn’t have any swelling in her legs and was breathing comfortably, but she was yellow. Her paper-thin skin had a tinge of the extruded hepatic substance called bilirubin, a byproduct from the breakdown of red blood cells. Her eyes looked similar, otherwise known as scleral icterus. She denied pain. The presentation of “painless jaundice” means only one thing until proven otherwise: pancreatic cancer. We talked for a bit with both her son and daughter, concluding that her CHF had dramatically improved but that her jaundice was of significant concern.

I ordered the laboratory tests, confirming that she had an obstructive process inside her biliary tract. She was readmitted into the hospital. The CT scan demonstrated the mass deep inside her belly. When posed with the question about what to do next, she and her family bravely opted for what I was hoping they would do: nothing. She did undergo a stenting procedure where a small plastic tube is inserted retrograde into the bile duct via an upper GI scope, allowing for better drainage of the liver, but she otherwise was at peace to go home on hospice.

I saw her one more time before she died. She had developed swelling in one of her legs. It was painful and her family wanted to know what could be done without too much intervention or trouble. It was a deep venous thrombosis (DVT), otherwise known as a blood clot, in her left leg. The preferred treatment is an injectable blood thinner which she used over the next 10 days to make her more comfortable as the body slowly resorbed the clot. She eventually switched to aspirin and, as far as I know, did not experience a recurrence.

This last visit was the inspiring visit that led me to believe that patients define health, not physicians. When I saw her that day, she was glowing, not from her skin color but from her pure essence. She portrayed a feeling of contentment I rarely see during a visit with anyone, let alone a terminal patient. Yes, the cancer was eating her from the inside out and causing her blood factors to inappropriately form clots in her legs but she told me how she was doing. Every Friday, her grandchildren still came over to play Euchre. She was visited once a week by her priest. She continued to read her Bible and do devotions. She was happy… and healthy.

Just two days before Christmas, my patient reached her final moment and died in the arms of her beloved son surrounded by loved ones. Her family brought over one of the traditional Catholic obituaries on a small bookmark-like card. I cherish these small but meaningful trinkets and reflect upon them in times of concern or self-questioning of why I went into medicine. You see, patients are ready to share their goals of health with us. We  just need to be ready and open to listen to them and help define it.

Humble myself. (Love / Provider)

Physicians actively delve into labeling and categorization but we are in danger of throwing humility to the wayside in the process. I’m a professional profiler, especially in primary care. When I hear hooves, I have to look for the common horses but still be on the lookout for the zebras, sometimes even the rainbow-striped sub-type. Common things happen commonly is the mantra. 

I would argue, however, that NOONE is common. All human beings are unique and have interesting backgrounds, skills and interests. Profiling patients based on their educational achievement, demographics (e.g. 42 yo white male or 83 yo black female), appearance (well-groomed or disheveled), employment status (employed, retired, unemployed, disabled, etc.) clinical presentation or even chief complaint is a seductive game that could falsely elevate the physician into a feeling of intellectual superiority or instill an unnecessary emotional distance that distracts and potentially degrades the interaction. The secret language and terminology we share inside the tribe separates us from the thems on the outside, especially when we do not make a connection and view the patient instead of the person.

You could be cast by a physician, in a negative light, as a high maintenance suburban housewife, a stubborn farmer, an ignorant white trash hick on government aid, a hard-working, but self-abusing blue color grunt, an angry, confused teenager, a know-it-all engineer, an undisciplined tween brat, a drug-addicted chronic pain patient, a misinformed academician, or, if you are me, a snobby, overeducated professional.

If you are offended by any of these terms, then you also need to look in the mirror and see your own hyperbolic self, building the caricature of the you who is seen superficially upon first blush by a pre-biased person. Realize, of course, this outer shell is not the deeper true you that you fail to reveal in most settings, even at your own doctor’s office. Don't blame yourself for not divulging these thoughts. The environment is not always safe for you to share those innermost worries, concerns or dreams anyway. Don’t be hatin’ is a common phrase used to seriously but jokingly call someone out for their depersonalizing and marginalizing comments.

The aforementioned descriptions may seem harsh but they are primal mechanisms of survival left over from a darker, evolutionary past. If I enter the clinical interaction without the awareness of pre-conceived notions and pigeon-holing, however, I cannot undo those projections unless I take the time to then search for the more meaningful, human side. Unfortunately, many busy clinicians don't like to take the time to draw out the multi-faceted aspects of our patients to see the whole.

The chain-smoking blue color line worker who works the midnight shift may also be taking care of his sick mother during the day, keeping her out of an otherwise expensive nursing home that would be a financial burden on his family and American taxpayers; he is a loving son, caregiver and steward of the healthcare dollar! The trailer trash mom is raising three adolescents at home, two of whom made the honor roll last semester; she is an inspired educator and mentor of at risk youth! The angry, confused teenager was recently recognized by her art teacher for a sculpture she made for her senior project; she is a budding, gifted sculptor and inspiration to her peers! The mild-mannered retiree with hypertension is the crew chief for his son’s nationally-recognized car racing team; he does something I could NEVER do! (Ask my family or wife about my mechanical prowess or lack thereof.) The academic who thinks he has an MD from the internet came up with a strange, obscure diagnosis that may actually explain his symptoms; he is HELPING me!

If I don’t take the time to humble myself and acknowledge the expertise and skills that my patients have (especially the ones that I don’t), I am denying a piece of them and falling back on a critical, discriminating but dehumanizing component of my own human nature. In fact, I will return to my profile of the mechanic. What if my corner gas station service specialist berated me for holding on to a dirty oil filter that should have been changed out 2,000 miles ago? I wouldn’t go back to him again. What are we doing as physicians to embrace our patients and keep them coming back to us in a humble and respectful way?

SECRET WORDS/PHRASES: "Humility needed." (Brevity phrase) OR “Please talk to me like a fellow human being.” OR “I’m not prioritizing my healthcare goals because I have other priorities in my life right now.”

(Love / Provider) Treat you like a family member.

All of us were told in medical school, at one time, to treat patients like family members. We lose this mentality very quickly as the daily battles become a war of us versus them. The popular novel usually assigned to the budding medical student, “House of God” by Samuel Shem, portrays this adversarial approach in two mantras that are repeated by the well-read scholar: “GOMERs go to ground” and “the longer you stay, the longer you stay” – phrases that refer to the patients who they would prefer to Get Out of My E.R. and the fact that patients always make our days longer. We deliberately depersonalize patients in a way that is meant to provide a more objective but cynical means of coping with the daily tragedies of medicine and the frustration with not ever being done with your work. Instead of reveling in the world of patient advocacy and diagnostic discovery, we get sucked into the grind of hospital rounding or the outpatient clinic, respectively trying to figure out how to get a patient off our list on the wards or another person out of the examination room and back to the checkout area. The folly of this mindset is that a new name will only replace the old name on your list regardless of how soon or late you discharge the patient from the hospital. In the same way, the clinic world is always running behind with good intentions at the start of the day and a frazzled staff (and sometimes disgruntled patients) by the end of the day.

The goal of treating patients like family members is that we offer the caring, helping hand that is meant to comfort in times of need. We reach out to our fellow human beings and see their concerns through the lens of their world, not ours. “The Doctor” was a powerful movie back in the early 90’s that portrayed a renowned and successful surgeon who was diagnosed with cancer at the peak of his career. He quickly turned the tables on his medical school colleagues and students by forcing them to learn what it is like to be a patient, not a practitioner. Following his recovery, the previously pompous doctor dressed them in hospital gowns and forced them to view the delivery of medicine from the other side of the stethoscope. As a technique, I will have my own family member-style discussions with patients to encourage them to go a direction I strongly feel or discourage them from going down a path that is not in their best interests by channeling this approach. A well-placed comment that I am only recommending something that I would make for my own family member is often well-received. I can only do so as long as I am being honest and forthright with my own convictions and their respective position and values as well.

The final warning to us is not to flip the roles and treat family members like patients. I have learned this problem the hard way by ignoring issues that family members have had or hindering the good work that colleagues were doing with my loved ones. I have to trust that my fellow medical community members have the same level of caring that they would want for their own family members as well. If I inject my own subjective feelings or motivations into the more objective viewpoint of a third party practitioner, I am no longer acting as the supportive husband, father, son or relative that I should be; I am, in fact, compromising their treatment course by getting in the way of the better care they would receive from someone else with a more objective lens. You have to love them so much that you can set them free, removing yourself from the clinical role and embracing the supportive family member that you should be.

SECRET WORD/PHRASE: "Family member treatment" (BREVITY WORDS) OR "What would you recommend (medication/test/procedure) for one of your family members?”

"Take care" and the rediscovery of the humors

When I first started my civilian practice in Milan, Michigan as a family medicine physician, I recognized that many clinicians often sent someone on to the checkout area with the phrase: Take care. It was a standard valediction from clinicians and used quite commonly by staff members as well. I even started signing off on my "lab letters" or other messages with the same charge to my patients: Take care. After examining this phrase further, I realized that for someone to "take care", there was an implicit assumption that the giver (the clinician) be available to offer the care that the receiver (the patient) would take. In addition, the receiver should also be ready to take on the responsibility of taking care of themselves through self care and following the provider's instructions. Ultimately, I realized the care I provided was only a small component of what the rest of the healthcare team offers. I may write the "doctor's orders" but an entire cadre of staff also coordinate this care as the patient navigates through the tangled mess of what is called the healthcare system, a phrase I don't generally use and substitute medical community instead.

The next part of my journey was to put together a door sign so I could share my philosophy of care with my patients. The sign portrayed what my patients would be expected to do, my own understanding of my role for accountability and how my staff would support my patients as well. I also posted a summary of my own family background as well as a summary of my most recent quality and patient satisfaction scores. Patients resonated with this approach to more overt transparency about my philosophy of care.

I realized over time that only taking care was inadequate for a more holistic approach. Although I was addressing the body with the tools of modern medicine, I was neglecting the heart, mind and soul. Patient's physical health was intimately tied to their emotional, mental and spiritual lives. Fortunately and to my delight, I was searching for a tactic that dated back to ancient times and the formative eras of medicine. The Greeks and others had long since tried to find a balance between the humors of Earth, fire, air and water and I was yearning for the same. I added additional mantras for these other aspects of health and wellness for my patients. It's been a wonderful journey and I welcome you to be yourself, think well, take care and, most importantly, love.

Humors

None of the findings from this blog are humorous; they are, if anything, highly concerning in the fact that our presumed goal of health in the United States is compromised by the hodge podge medical delivery approaches we have patchworked together in our country over the past many years and call them the American healthcare system. Instead, we now have a medical industrial complex that feeds not off of health but of care. There is no American healthcare system. A system implies deliberate design with functionality and an end state in mind. Instead, we are a confederacy of special and corporate interests, government collusion and perverse insurance-driven incentives and disincentives that, ironically, includes, generally-speaking, well-meaning people who want to do good things for others and themselves. Whether they actually do good for others and do it well is not quite as evident. In fact, the answer to whether we are doing good or well is oftentimes a clear no. We apply Bandaid remedies to a steady hemorrhage of lives and treasure instead of contributing to an improved quality of life and higher productivity on behalf of our nation’s population. We are certainly living and working under funny, adverse conditions.

The time has come to inject information into ignorance with a level of transparency only available through the power of an open source exchange. The American public has been bullied by the larger medical community's proprietary interests and manipulated by consumerism. Media personalities spread anecdotal remedies and propagate unproven technologies for personal gain and wealth. Interest groups claim to advocate for health via social media by spreading misinformation into the e-ether under the banner of a grassroots, democratic movement. Politicians and their governments benefit from corporate interests and have, in turn, oversold the value of healthcare insurance instead of incentivizing healthy behaviors. Insurance companies have capitalized on the fears of high cost services in favor of skimming and raiding our coffers to fund their own unnecessary overhead and satisfy their corporate sponsors and executive salaries. We now have multiple layers of middle management who justify their existence by analyzing data and documenting our slow and painful demise as a society with no real actionable solutions.

Ultimately, the answers lie not in any of the three major contributors (commercial interests, government collusion or insurance companies) to our problem; THE ANSWERS LIE IN US – the human beings - the air-breathing component outside of that machine, who must function organically in a larger and sustainable whole, demanding what we deserve: true health and wellness paid by appropriate revenue sources and bolstered with incentives and rewards for healthy, informed choices and behaviors.

Economists note that asymmetry of information is what provides a significant positional advantage to those who are in the know versus those who are not. By publishing these thoughts and distributing it for free, I am trying to leverage what is called first mover’s advantage. I am calling for radical change and disruptive technology for strategic and economic gain on behalf of the providers and patients who try to navigate the confederacy with significant futility.

Granted, there are some brighter points of light in this country that have spearheaded some progress towards committed, healthy lifestyle improvement but even their efficiencies are compromised.  Persistent misinformation is spread through the very same media that we should be mobilizing on behalf of ourselves. Entire public relations departments are located within each of our various institutions to affect or sustain anecdotal truths that are based on eminence or influence instead of evidence and common sense. If we simply released the chains of ignorance and fear, we could reach for much higher goals of achievement and wellness. Let’s do this together by developing a common language for common goals.