Trust, Small Decisions, and Improving Health Care

Our lives are built on trust in others. We trust that the person in the car stopped by the red light will not suddenly hit the accelerator and run us over as we cross the street. We trust that the people upon whom we depend, whether they are family members, doctors, grocers, or plumbers, will do their jobs and meet their responsibilities in such a way to help us stay healthy, fed and safe. However, in an increasingly impersonal world, can we still trust? Can we depend on the right things happening, when we don’t know the nurse, the doctor, the plumber and the grocer?

I grew up the son of an immigrant who owned a small “mom-and-pop” grocery store in New York City. My father knew each of his customers, would physically give them the food, and would understand when they couldn’t pay at that moment in time and would try to help them. I vividly remember seeing lists of names—on the backs of envelopes and scraps of paper in the store—of people who owed money from when they needed food and couldn’t pay for it. My father felt he had a responsibility to his customers who needed the food; the fact that they couldn’t pay at that moment, he reasoned, should not stop them from having that food. There was no interest paid or collection agencies. There was simply trust. Sometimes, I would deliver the food to people’s homes when they could not leave the house because they were old or infirm. As a child, I was sometimes a little frightened going into strangers’ apartments in areas of New York that others would consider dangerous. Yet that, too, grew out of my father’s sense of responsibility—and the trust between my father and the people who needed the food.

So what does all this have to do with health decisions? Health is not only about what doctors, hospitals, or any healthcare providers decide. It is about the small decisions people make every day in thousands of ways, big and small. Here at Accolade, we tried to estimate the number of health decisions individuals make every year. We started with claims, as each claim represents a medical service that results from a decision. We added in over-the-counter medication use, gym use, and other “everyday” activities. We left out the decisions around food purchases--even though as a grocer’s son and a physician who is board certified in clinical nutrition, I believe food purchases to be among the most important health decisions. We also left out the decisions we all make around everyday activity, such as whether we park our car in a place far from our office entrance or as close as we can to avoid a long walk. The result: We estimated that the average person makes more than 2,500 health decisions a year. It is, admittedly, a poor estimate-- probably underestimating by a large factor; it also reflects the average person, not necessarily the sick person.

How are all these big and little decisions related to trust? If you want to improve healthcare decision-making, you have to be able to influence those thousands of small decisions—which means you must build trust with the decision-makers, who may or may not be the patient. In many families, the wife and mother is the main decision-maker for the family. It also means that health systems and health policy must support and facilitate good decisions by people even when those decisions are small, whether they are healthy or sick.

Let’s examine nutrition as an example. A recent Health Affairs article about nutrition highlighted the health consequences of an industrialized food industry that processes food—sometimes to increase affordability, sometimes to increase shelf life, and ultimately leads to obesity which leads to disease. Written by two former Secretaries of Agriculture, Dan Glickman and Ann Veneman, the article states:

“On the one hand, with obesity-related health costs rapidly rising, the federal government has encouraged people to make healthy dietary choices through efforts such as Let’s Move! and MyPlate. On the other hand, the federal government spends billions of dollars on traditional agricultural commodity programs that fail to reinforce the kind of healthy dietary choices outlined in federal dietary guidelines.”

This article was published at about the same time Sequoia Capital invested in a rapidly growing start-up company, Good Eggs.  Good Eggs is making locally sourced healthier food more available, offering a communication platform and delivery service for consumers with the farmers, bakers, and other food providers that is personal and easy. (Full disclosure: My son Rob Spiro is co-founder and CEO of Good Eggs; my goal is to someday bag and deliver groceries for them so I can go full circle from my youth.)

Good Eggs realizes that the answer is less about programs and more about fostering a personal system in which the local person who advises people and helps them is right there, helping them make better decisions. We need to replace the emphasis on an industrial system that is focused on large production and bulk delivery. We need to foster a trust based on the fact that you know the person who produces your food, that they know you and that you each have the other’s best interests in mind. You meet your local farmer on Good Eggs, can speak to him or her and end up eating healthier foods as a result of that personal trust. This trust, simplification and facilitation of smart, small decisions leads to better eating, lower rates of obesity and lower healthcare costs than any forced weight loss program. It is really about trust and people-to-people communication.

Technology can help facilitate this communication, but can never be the only answer. The folks at Good Eggs have found that they had to use creative and imaginative apps and technology, but that they also had to deliver the food and actually “touch” their customers, person to person. Bryan Shreier from Sequoia Capital in an article linked here talks about the need for tech firms to embrace operations and not assume the tech alone will be the answer. He uses the examples of Good Eggs, as well as Uber, the limousine service, as companies using technology to simplify and personalize a human interaction.

In healthcare, specifically, that need to facilitate the person-to-person interaction, which leads to better decision-making and better health and sickness care is even more urgent—and is our approach at Accolade.

Unfortunately, the health technology industry often seems to only focus on the "big data" and the “apps.” In an article in Fortune Magazine entitled, “Health Apps Don’t Save People, People Do,”, Ryan Bradley reviews a number of studies that show, when it comes to the treatment of obesity and diabetes, apps alone--no matter how enticing and technologically simple--are never as effective as person-to-person interactions. Bringing people together with each other and with educators and professionals on a regular basis positively influences their decision-making, and ultimately, their activities and the choices they make.

At Accolade, we see that every day in the small decisions that our Health Assistants help people make as they live their lives. The people we serve are trying to make a living, feed their families, and choose what to do about their ailments and lifestyle. No matter how big or small those choices are, the answer always lies in the trust and help we give each other. That social interaction gives strength to our fellow  human being, helps them through tough times, shares and celebrates good times—and creates the positive decisions and outcomes that bring better health and better life to people. While we use "big data" and "apps", ultimately we know that Angry Birds alone can’t do that. We know that technology can only be the answer when it is facilitating human interactions. 

Laura's Story

Recently, Laura Stout, a Health Assistant I work with at Accolade shared a story with me that has been passed down in her family.   I share it here exactly as she shared it with me, with her permission of course. 

“I have an interesting story about my Great Grandmother… 

She was working on the Family farm and had a serious farming accident during harvest.  A corn stalk punctured her lower leg and continued through her leg until it reached her knee.  She was 26 years old and had two kids under the age of five years old and a dairy farm to sustain.This wound was enormous and became infected which considering what they use as fertilizer, is no surprise. 

The shocking part of the story is that due to the “blood poisoning” caused by the infection in her injury, the small town doctor gave my great grandmother two options for treatment, “You can have your entire leg amputated, or you can die”.   

Well, this seems like an obvious course of treatment in the pre-antibiotic era, but what was not considered is that for a Mennonite woman in rural PA working a dairy farm and raising a young family, the loss of her entire leg was a worse option than death itself.  So, she said… give me death…. 

Well, my Great Grandfather was not as on board with this as an option, so he took my Great Grandmother from her “death bed,” to an Indian Medicine man who made a wash using unknown ingredients (in the story it was some type of ash water) and instructed her to rinse her leg day and night changing its wrap continuously.  

Long story short… My Grandmother was her fourth child.  My Grandmother talks about reaching up her Mother’s leg and feeling the scar and hearing the story as a warning during the harvest every year.”

This is a wonderful parable that illustrates a number of universal truths that we in health care see every day. 

• ·      Every family has their own stories, their own “mythology” that helps define the family’s values, beliefs and strengths.  Those stories help pass on from generation to generation core aspects of that family’s approach to health, illness, adversity and life itself.  Whenever you work in a helping field, the ability to have a person share their family story is extremely valuable in enhancing the professional’s ability to help that person and their family.
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•       Based on a person’s values, death may not be the most negative outcome.  In this story, the thought of being an added burden for the family that needed her was worse than death for Laura’s great-grandmother.  When health professionals help others, they have to understand that there are certain things that may be more important than health such as caring for a family and being true to one’s beliefs and values. 

• ·      Everyone can be totally open, and be totally correct and yet be incomplete in their “truth”.  Thus the country doctor was absolutely correct from his training and perspective that the only choices were amputation or death.  The medicine man’s knowledge of what were certainly antibacterial substances was unknown to the doctor and therefore the doctor’s knowledge was incomplete.  Even in today’s advanced medical world, an expert in a narrow area of medicine can easily miss options that are available outside of his or her area of expertise. 
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•       Lastly the power of a narrative, a story used to communicate, should be strongly valued.  We are truly fortunate to have narratives before us daily and we should always strive to capture them, learn from them and use them to teach others.  

Disease, Illness and Suffering

Health policy tends to focus on population issues such as costs, access, and outcomes and in recent times has developed strong interest in evidence based medicine, changing behavior within communities, insurance exchanges, and encouraging consumerism.  These are all important concerns however I fear we all lose when we focus too much on the policy and not enough on what that policy means to the individual in need.  We may be missing critical components of the nature of disease, illness and suffering as we push to redefine patients as consumers of health care services in order to lower costs and broaden access.  While those policy efforts bring benefits, they also have the potential to harm individual patients and their families.  For me as a physician and for most health professionals, patients are more than consumers and illness and suffering are more than the biology of disease.  For clarity, we need to define disease, illness and suffering.  

• Disease: Any impairment of normal physiological function affecting all or part of an organism, especially a specific pathological change caused by infection, stress, etc., producing characteristic symptoms. 
• Illness: The experience of a person who has a disease including the psychological, the social, the financial and the spiritual.  Different people experience diseases differently and that difference makes illness unique for each person. 
• Suffering: The feeling of pain, loss, fear, loneliness, stress and even spiritual angst that can be associated with disease and illness however may also be present in the absence of any biological stress. 

These distinctions are important for individuals and for policy.  People want to be understood as unique and autonomous when they are in a time of need.  Evidence based medicine which is solely focused on the physiology of the disease may not fit the experience of the illness they have and they feel.  An evidence based disease protocol that calls for medications that are too expensive for a particular patient or for advanced diagnostics that are not available in a certain community and requires travel and time away from work and family do not fit the patient’s illness which is their reality of the disease.

 

Recently at Accolade, we assisted a woman who has a disease called pseudotumor cerebri.  She lives in an area in which the best physicians and facilities to treat her disease are about four hours away by car at a renowned academic medical center. We had originally helped arrange for her initial care at that academic center.   The reality of her illness, as opposed to her disease, includes the fact that she cannot drive four hours and her husband cannot take time off to drive her as he is at risk of losing his job if he takes more time off of work.  So she will not go back to that academic center even though she had her initial successful treatment there.  We are now helping her get the best possible care for her disease and her illness closer to home by marshaling local resources for her.   The risk of receiving care that is potentially not as good as the care at that academic medical center is worth it to her to maintain her way of life and to avoid further work stress for her husband.  We are helping her with her illness not only her disease. 

In health care and in health policy, we tend to focus on suffering in situations in which someone has a terminal disease that is beyond our abilities to cure however suffering is seen in any number of illnesses and even in the absence of an illness.  A person who has lost a job and cannot care for their family is suffering without an illness.  We recently had the occasion to help a woman whose husband died after he saved her from a riptide when they were swimming in the ocean.  That woman was not sick but was profoundly suffering.  On her third call with an Accolade Health Assistant, this woman spent time crying with her Health Assistant and grieving at her great loss.  She needed someone she trusted to just listen and be that shoulder to cry on.  She needed someone to be with her through her suffering.  

I think about these cases because we cannot “fix” healthcare, making it affordable and accessible until we acknowledge and address illness and suffering and not only disease.  That means realizing what is important to families and not only the important biological facts.  Daniel Sulmasy, a Franciscan monk and a physician who is on the faculty of the University of Chicago Medical School and the University  of Chicago Divinity School has written eloquently for years about the need for patients' illnesses and suffering to be recognized and “treated” as effectively and diligently as their disease. 

In his books, Sulmasy points out that the role of a health professional is not merely to cure and treat disease, but to address illness, and perhaps most of all to relieve suffering.  He points out, “the need for medical care is not like the need for automobile repairs or a haircut”.  He quotes Robert Sokolowski, the eminent Catholic theologian and professor of Philosophy as saying, “The medical need is special not because my body is at issue but because I am at issue.” 

Sulamsy writes, “They (People) want a form of medicine that can heal them in body and soul.”  “They seek a form of medicine that treats them as persons – a form of medicine that acknowledges what science cannot see or hear or accomplish.”  He goes on to say in describing the limitations of purely science based medicine, “Patients came to feel like scientific specimens rather than human beings.  Iatrogenic (illnesses caused by medical practice) grew steadily more prominent with every scientific success.  Some side effects have been even more social than biophysical…..The solutions to these problems…have been diagnostic of its affliction – more nursing homes, more neonatal intensive care units….Empathy and mutual acceptance of the frailty of our common humanity have come to be considered anachronistic.” 

Sulmasy knows that the pain of being alone when you are sick is not eased by having an MRI.  The suffering of something as simple and “minor” as an upper respiratory viral infection is not eased by antibiotics that won’t cure a virus but will make it feel as though someone cares enough to take action.  We need more caring and less unnecessary testing and medications.  We need more caring and fewer interventions that do not contribute to improvement in life.  We need more treatment of the illness and easing of the suffering while we treat the disease. 

The irony is that modern health policy, by focusing only on disease increases costs as people try to find solace and understanding through the lab and the pharmacy.  It is only by caring for people through their illnesses and their suffering that we can achieve true savings as people stop trying to find answers and solutions where none exist.  To paraphrase Professor Robert Sokolowski, we must always keep sight of the person, the “I” and not only the body.

What is “Best” Care and How is it Determined

In medicine, randomized controlled studies have long been the gold standard in defining the “best” care. In these types of studies, usually two large groups of patients, the larger the better, receive the same care except for one intervention that is different for each group and the results are compared. This defines the best care medical science has to offer. No one disputes the usefulness of these types of studies, however, are they enough? Do they really tell us all we need to know about the care of an individual? 

A recent article in the journal “Medical Decision Making” by Bruce Barrett M.D. entitled Sufficiently Important Difference: Concepts, Caveats, and Challenges questions whether our approach to using and interpreting these studies is adequate. The article looks at randomized controlled studies and the facts that they define in light of a new reality in health care. The new reality is that the value from the patient’s point of view is the key factor that must be taken into consideration when doctors and patients make decisions about care. That patient point of view has rarely been used as an end point in randomized controlled studies and the evidence based medicine that results. Dr. Barrett defines this focus on value from the patient’s point of view for clinical research design purposes as the “sufficiently important difference” (SID) or the “smallest worthwhile effect” which he defines as “the smallest amount of patient-valued benefit that an intervention would require to justify associated costs, risks and other harms.” He then adds, “SID is understood in the context of existing evidence and is measured at the individual level.” Measuring at the individual level is earthshaking for clinical researchers and for those who apply clinical research to the practice of medicine because when randomized controlled studies are done, the gold standard for results is always population based. While individual decisions must be informed by population statistics, the real impact of a particular intervention on an individual may not perfectly fit a population fact found by study. By telling us that the way to do clinical research is by measuring at the individual level and that it be “patient-valued” Dr. Barrett is telling us that we have to look anew at the outcomes of studies and as a result, many of our favorite “facts” and “goals” in population health and in the diagnosis and treatment of disease. A recent case in the news illustrates this point. As I write this an 11 year old girl is going home from the hospital after receiving a double lung transplant. The standard of care based on population evidence and expert consensus is that this lung transplant should not have been allowed to happen since this child was considered too young to receive adult lungs. A persistent legal and public relations fight by her parents forced the circumvention of this rule and this child is going home now with new lungs. The population facts were not disproved and remain helpful; they just did not perfectly apply to this young girl.

Dr. Barrett in this article points out that evidence based decisions, which are usually based on randomized controlled studies are not perfect in their design and suffer from their own limitations including “1) difficulties in forecasting individual outcomes from observed group effects; 2) the fact that negative outcomes are underassessed and underrepresented; and 3) the high degree of variability in how individuals value and weigh various positive and negative outcomes.” 

He does not say this in a policy journal or in a popular magazine. He makes these statements in a journal that only a statistician can really love. The science of medical decision making and the articles written in this journal are more geared to statistical researchers than to clinicians. In this same issue, there is an article entitled, “Development of a Framework for Cohort Simulation in Cost-Effectiveness Analyses Using a Multistep Ordinary Differential Equation Solver Algorithm in R”. For the journal Medical Decision Making, that is a relatively common type of title. I mention that only to make the point that Dr. Barrett is making these pronouncements as a way to improve analytics and as someone who believes in scientific and even mathematical approaches rather than as a moral argument. 

However he does realize that there is a moral dimension to his argument. After making a convincing case that “Patient-oriented evidence that matters (POEM) is superior to disease-oriented evidence (DOE), such as biomarkers or surrogate markers” on analytic grounds he goes on to say,

“Given this background, I would hazard the contention that the current system may to some extent be both unethical and irrational. Difficult questions must be asked: Is it rational to implicitly value benefits more than comparable harms? Should we continue to design and interpret trials based on benefit effect size only, ignoring harms? Is it ethical to take decision making away from individuals (guided by their clinicians) and to instead give that power to medical scientists, insurance companies, technocrats, and policy makers who set guidelines and formularies that determine care? I don’t believe that any of these questions should be answered in the affirmative.”

Thus he defines the challenge to the good, ethical clinical researcher and to the practitioner trying to follow evidence based medicine and best medical care. The challenge is at the least, to interpret randomized controlled studies with outcomes that are defined by patient values not only population metrics. It may mean moving to a whole new paradigm of clinical study that builds upon randomized controlled studies in new ways to measure these important patient-oriented outcomes that matter. He argues that until we understand how individuals value various benefits and harms we cannot really say what the best course is for a patient who is ill. For the practitioner that means knowing who your patient is as a person and not only knowing the biology of their disease. Ultimately, his scholarly analytic approach supports the contention that each individual is unique and autonomous with his or her own values that must be supported and respected.

Review, Quality Control and Arrogance

In 2002, I had an 80% right coronary artery narrowing that resulted in my having an angioplasty and a stent placement.   I thought of my procedure when I first read of the coronary artery stent placement performed on former President Bush and when I subsequently read the Washington Post opinion piece entitled “President Bush’s Unnecessary Heart Surgery” written by Drs. Vinod Prasad and Adam Cifu.   While I understand the authors concern that people who are asymptomatic will mistakenly interpret President Bush’s stress test and subsequent stent placement as meaning that this sort of approach should be taken for everyone, I am even more concerned about their strong statements that the former President’s care was wrong.   In their zeal to prevent unnecessary and potentially dangerous care, the article crossed a line by proclaiming judgments on medical care based on limited facts and incomplete information.    They presented as absolutes, decisions made daily by caring physicians and informed patients that are often more nuanced than they appear.  Medicine exists in the realm of uncertainty and consists of the constant balancing of risks and benefits for individuals.  Within this realm of uncertainty there still must be quality control to protect the public from dangerous and unnecessary care since doctors are human and make mistakes.  However, there is a difference between careful and thoughtful quality control and Monday morning quarterbacking.  There are four major factors that cause me to pause before I make the kinds of absolute statements that are made in this article.  These same factors also cause me to hesitate before endorsing many of the decisions that insurance carriers and regulators can be too quick to make about payment for services and quality of medical providers. These factors are:
Facts Change:
Back to my angioplasty and stent in 2002.  At that time, I had what was considered to be the correct standard of care.  The cardiology department at the Harvard teaching hospital where my procedure was done was steeped in the academic studies that rigorously followed the facts in the medical literature.  Today the facts are different as pointed out by Drs. Prasad and Cifu because as more information and different studies are done, facts change.  In an article published in the October 2012 issue of the American Journal of Medicine, Dr. Joseph Alpert points this out quite eloquently.  He states in the article entitled, “What Is True Today Is Often Not True Tomorrow”, “In fact, it is likely that many of our current medical beliefs will turn out to be untrue or only half true as a result of information obtained through subsequent scientific investigation.”
Populations Change:
When studies are done, the population is often defined in one way; however as more facts become available, certain subpopulations are defined that do not necessarily follow the lessons learned from the broader population.  Thus, as an example, women with breast cancer as a population do not benefit from removing the unaffected breast.  The smaller subpopulations of women with breast cancer who are positive for the BRCA gene however do benefit. 
Context Matters:
If someone cannot afford medication, then prescribing a medication that they will not take is not good care, even if the care pathway says it is.  Context is any factor that may make the “correct” approach or therapy not be applicable.  Every few months, I get the obligatory letter from my health plan saying that I should be on an ACE inhibitor due to my history of heart disease.  With my history, taking an ACE inhibitor every day is a good idea and is a part of many care guidelines and standards.  The health plan does not see my context which is that I don’t tolerate ACE inhibitors because they cause me to cough.   Context can be medical issues, social issues, even religious issues.  When I was in practice I cared for a number of people who were Jehovah’s Witnesses.  As part of their religious beliefs they often refused blood transfusions which, as a gastroenterologist treating them for bleeding from their GI tract caused me to modify my approach in order to respect their religious belief.  I found that they could be treated successfully even while being sensitive to their culture and their beliefs, however, the treatment often was not in keeping with the standard care approaches.  Context can be related to issues of culture or simply related to issues of communication and trust.  Dr. Saul Weiner and his group at the University of Illinois have studied context in medical care and have found that care quality is compromised and care outcomes are worse if doctors and nurses do not actively ask about contextual issues and change their approach based on the answers to those questions.
We don’t know the context of the former President’s procedure (although I suspect it was not a financial issue).
Real, Pertinent Information is Often Limited Outside of the Patient and Caregiver:
Perhaps the most intelligent statement made in the Washington Post piece by Prasad and Cifu is “Few facts are known about the case”.  In the case of the former President, we don’t have all the facts about what was said between doctor and patient.  We don’t know if President Bush had mild jaw pain that was considered to possibly be atypical cardiac pain during the long bike ride that was noted.  We don’t know if his ability to do other activities had been affected in small ways that his physician believed to be a warning sign.  The fact is that both media reports, and also the claims data that health plans depend on, are very limited and usually do not include the small clues that may lead a physician and patient in partnership to decide on a specific course of action.  Even electronic medical records may not have all the necessary facts.  It is the height of arrogance to think that through media reports we have enough information to make these types of statements.   We also can be misguided if we make payment decisions and judgments on the quality of care a physician is providing for an individual patient solely on claims data. 
I think there is another way.  I think there is a way to encourage good individualized medical care without the second guessing that is becoming even more prevalent in medicine, insurance and in public policy.  There is a way to include context in care pathways and guidelines; to develop quality systems that review patient physician interactions based both on outcomes (and right now the former President’s outcome looks pretty good) and on the process of individualized care.  That will require more communication and integration within medicine, that goes beyond system integration and back to physicians and nurses actually talking to one another and talking more with their patients.  It will also require that we acknowledge that medicine is really about uncertainty and that includes uncertainty about applying the ever evolving science of pathophysiology to the individual patient to maximize the value to that patient.  It will require a rethinking of our belief that every person fits neatly into a care guideline or insurance medical policy and that claims data can adjudicate every medical interaction easily.  It will require less arrogance and more cooperation and coordination in the pursuit of the best result for every patient. 
       

Learning Patience as a Patient: Time as the Forgotten Element in Care

One of the first principles that I learned in medical school was that every illness has a “natural history”.  The good doctor and nurse, I was taught, only intervene in that illness progression at the right time.  Try to do tests to diagnose or try to treat too early and you may put the person at risk and actually harm the patient.  Wait too long and you may miss the opportunity to cure the illness.  So the first task of helping anyone is to find out where, in the natural history of disease, they actually are!  That is often a first step before even making a diagnosis, since trying to make a diagnosis for a set of symptoms that are most likely to get better on their own accomplishes nothing except putting the patient at greater risk.  In the best model of patient autonomy and physician-patient partnership, helping the person understand this time basis for medicine when they are sick, tired, scared, and impatient can be a real challenge for any health professional. 

At one point in time, when the tools that medicine had to treat someone were limited, the ability to determine where someone was in the illness progression was almost the only skill that physicians brought to the table.  In the pre imaging, pre antibiotic, and pre-anesthesia eras, diagnostics was limited to the doctors senses, what he could see, hear, smell and feel and therapeutics was almost nonexistent.  However that ability to predict for the patient and the family what was likely to happen and counsel them accordingly was critical and was often the difference between a gifted physician and a mediocre one.  The doctor who could reassure accurately that the person would get better and who could also say that someone else was likely to succumb to their illness would be helping the patient and the family prepare for the next step in their life journey. 

In today’s world, thankfully we have many tools at our disposal to positively impact the natural history of disease.  However, there is still a right time within that natural history to take action and a right time to wait and let nature take its course.  Even today, the good doctor, nurse and therapist understands that and is able to time both the diagnostic tests and the therapy in such a way as to maximize the benefits and minimize the risks. 

This is very difficult in practice.  Patients come in with their own beliefs that are set by our society.  Physicians, nurses and other health professionals are not immune to those cultural norms.    We live in a world of immediacy.  We live in a culture and in a country in which the central myth is that death and illness is optional: a culture that has a world view that every problem has an immediate solution and every illness can be cured immediately if only you could find the right doctor or the right therapy to make it happen now!  That is not reality.  Even in these United States, life is a fatal illness and the natural history of disease still holds sway.  This holds true for all illnesses. 

A personal example exemplifies this principle. 

Someone very close to me developed an enlarged lymph node under her jaw.  She went to her doctor who examined it and told her that while he did not think it was anything dangerous, he wanted to watch it.  He carefully examined and measured it and arranged to see her one month later.  He told her that while it was probably a “reactive” node from some infection that was not apparent, it might be a lymphoma or some other cancer.  Even though that life threatening diagnosis was possible, he was right to follow its natural history and evaluate it by seeing her in a month.  My relative spoke to me every step of the way and I played the role of keeping her patient and calm in order to allow her the maximum benefits of medical care.  At that point in time, the risk of doing anything other than watching the node over time was greater than the possible benefit of a definitive diagnosis.  The doctor took a stepwise, time based approach moving from less invasive testing to more invasive over a six month period, all the time carefully monitoring the node to see if it enlarged or shrunk or changed in any way.  After 6 months of this careful watching and waiting, surgery was done to remove the node with all of its attendant risks which in this case included such dangerous outcomes as facial paralysis.  Thankfully it showed no cancer and the surgery was done without any untoward incident or complications.  The stepwise, time based way in which the care was done was absolutely correct to minimize the risks while maximizing the potential benefits.  The anxiety that it caused was real and my loved one needed support to manage that fear in order to obtain the value of that "best" care approach.  That is the way that medicine should be practiced.  Yet in our immediacy society, it rarely is done in that way. 

Thus in our impatient, immediate world, it is not enough to stop and smell the roses.  When stopping our busy lives to experience the beauty around us is impaired by illness, fear and whatever personal emotional issues overcome us, we need to also stop and work with our health professionals to time our evaluation and treatment in such a way as to acknowledge the progressive basis of care, minimize the risks of evaluation and therapy, and maximize the potential benefits of our interactions.  Only then will we, as patients, really be getting the best care possible. 

Leading, Following, and Good Healthcare Decisions

Healthcare decisions should be made by an autonomous, independent person supported by family, friends and trusted advisors, which should include health professionals.  A person’s health is best driven by decisions that are “owned” by both the patient and the health professional working collaboratively always reflecting the values of the patient using the knowledge and experience of the professional.  While the patient is the final authority, if all those around that patient are merely agreeing with the person, and “following” them as they make bad decisions, without giving them the full benefit of their knowledge and experience that results in poor decision making.  Healthcare decision making should not be driven by an autocratic doctor and should not be patient self-service.  Either end of that spectrum can result in bad, even catastrophic outcomes. 

Two stories illustrate this and both involve potential stupid decision making by an autonomous, perhaps even intelligent, independent person.  That person is me. 

In 2001, I had a right coronary artery angioplasty and stent placement necessitated by an 80% blockage of that artery.  I had some very mild shortness of breath as I ran through airports, which as a   busy physician healthcare consultant, I did quite a bit.  I saw my primary care physician who sent me over to see a cardiologist and the next day, I was having a stress test with an echocardiogram to look for any possible problem.  The result was clear and striking.  My stress test was abnormal and the echo showed decreased wall motion of the heart in one section with exercise, a sure sign that there was a coronary artery blockage.  I had an important meeting in another city the next day so I immediately told the cardiologist that I would have to delay the next step in this process which was the cardiac catheterization and the resultant therapy depending on what was found.  After all, I was smart and the symptoms had been going on for a while so why should I change my schedule for this?  I was leading and thought everyone else should just follow.  Happily I had a cardiologist and a wife who did not accept my leadership and reminded me that the reality of the situation was that the blockage which was clearly present could kill me and I would be better off heading for the cardiac catheterization lab directly rather than fitting it into my work schedule.  They chose not to follow my lead but instead to help me come to a more rational decision.

For those this think this was a momentary aberration in a lifetime of good decisions, an example from last week is useful.  I had to drive a car from Atlanta to Philadelphia.  I like to drive and even a 12 hour drive is something I can do, even on my own, or at least I like to think so.  However I also have herniated discs and have had back surgery in the past.  My back was giving me some pain at this moment and my primary care physician had started me on a short course of steroids for the pain. I decided to drive up anyway.   I thought to myself, “I can make the drive. After all, I have cruise control don’t I?”  That was another potentially stupid decision that could have easily driven me back to the operating room for more back surgery.  The voice of reason was my wife who did not accept my logic and gently told me (or perhaps not so gently) just how stupid I was being.  Instead my 19 year old son drove the car up to Philadelphia for me.  I wanted to lead and I wanted those around me to just follow my directions.  Instead they were smart enough to stop me and protect me from myself.     

I tend, like many, to think myself stronger and less at risk than my 61 year old biology would suggest.  I discount the bad that can happen and focus on the positive.  A country song entitled, “I Ain’t As Good As I Once Was” by Toby Keith has the lyrics, “now my body says you can’t do this boy but my pride says oh yes you can”.  Those lyrics often reflect just how I feel when I try to evaluate my own symptoms and my own healthcare options in making decisions.   Overall that makes for a happy life however it may not make for the best health decisions.  I, like just about everyone, need help and perspective and that involves having people around who you trust and who can lead you as well as follow you. 

Examining feelings and beliefs and helping compare them to reality is often needed and trusted family and professionals can help do just that. That often takes repetition and a bit of courage on the part of the helper.  It is easier just to follow and go along rather than help someone confront the cold hard truth.  In my most recent case of personal stupidity, I asked my son for help after my voice of reality and prospective (in this case it was spurred by my wife’s voice) reminded me that my back would not let me drive 12 hours by myself. 

In my perfect world of healthcare decision making, both patient and health professional would have veto power.  I want my doctor, nurse, and trusted advisors, including my Health Assistant to stop me from doing something stupid.  I want them to help me take action when action is needed.  I don’t want them to passively follow me as I make bad decisions.  I want them to help me choose action when action is needed.  I want all decisions to be mine but I want help, knowledge and perspective to come from those I trust and from those I love when I make those decisions.  I want them to be open and honest and not just to agree with my bad decisions just to be agreeable.    That makes for the best decisions and that takes time, knowledge and trust.  There are no shortcuts and there are no easy ways around the need to confront reality rather than just blindly give orders, as some health professionals would like to do, or blindly follow the lead of the patient as he or she makes bad choices.