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. 

The Relationship Revolution

The Industrial Revolution is dated to the late 1700s, and the early 1800s.  It represented a massive change in manufacturing with society going from hand production to machine production.  This brought with it less poverty and increased living standards for a huge portion of the population.  It did not however go without its challenges as the Luddites of 18^th century England fought the move from skilled artisans to machine production.  The Swing riots in England in the early 1800s fought threshing machines which were starting to transform agriculture just as the Luddites battled against machine production of textiles and other iron goods.  They fought because they saw what was being lost.  The personal relationship that a person had with the farmer, the shoemaker, and the furniture maker who were part of the community was no more.  That relationship and the connection to the source of the food and goods you use on a daily basis was real and brought appreciation and respect that took a back seat to the need for systematization and safety.  At that point in time, that trade off was appropriate and necessary as we brought millions of people out of hunger and poverty. 

While threshing machines started a transformation in agriculture, it was not until after the introduction of the tractor in World War I and the wide acceptance of the tractor (which did not occur until after WWII) and other large agricultural machinery that the family farmer began to fade from view and the industrial farm began its gradual domination over food production. That also brought lower cost food for the masses but even more distance from the local food produced with pride and even love. 

Society has progressed through technology and modern industrial systems.  We are fortunate to have easy access to food through our supermarkets and to clothes, furniture and other manufactured goods through our stores.  We don’t have to trek to the farm, and to the dressmaker, and to the cabinetmaker to buy individual goods.  This progress has freed us from the time and energy needed to access all those goods and services.  It has improved our ability to ensure a basic level of safety and quality in food and manufactured goods.  But it has cost us in terms of local relationships and connection to the people who bring us these goods. 

In many ways, health care has resisted this systematization perhaps due to the intensively personal nature of illness and suffering.  That resistance to systematization has hurt health care in terms of basic safety, minimal quality standards and easy access.  We are now in the midst of an upheaval in health care with an industrialization going on that can radically change health care, in many ways for the better, allowing more access to care and more efficiency in care delivery.  However we risk losing a personalization based on relationships that we have seen lost in manufacturing and in food production.  The lone doctor as an island fighting back disease and answerable to no one but the patient as he or she cares for the sick is somewhat romanticized however it is based on a “hand production” model that is fading from view and that is good!  But that lone doctor had a relationship with the patient that cannot and should not be lost.  The Luddites and the rioters in the Swing riots have, in today’s world been caricatured as those fighting progress however they had a point that a loss was taking place: a loss of human relationships and the pride and quality that goes with those relationships.  When we move to this industrialization of health care, can we maintain the human relationships as we reap the benefits of more consistency in quality and more access to care that the health care industrial revolution will bring? 

At Accolade we are trying to marry the industrialization of health care with a focus on building and maintaining relationships in order to get the best of both worlds.  On a recent trip to Seattle and San Francisco, I saw two other organizations, one in health care and one in food production and delivery that are attempting to do the same.  I believe that Accolade, Qliance and GoodEggs.com all represent a new revolution: the Relationship Revolution that is attempting to bring back the skill and pride of the lone physician, the artisan and the family farmer while retaining and even improving the access to goods and services and the quality assurance that is made available by industrial systems. 

Qliance is a multi-site primary care practice in the Seattle area which employs Internists, Family Physicians and Nurse Practitioners to serve their population.  They describe themselves as a “healthcare organization giving patients affordable access to highly skilled doctors, nurses, and healthcare teams”.  They have the appropriate management systems and computerized medical records to create efficiency and to ensure minimal levels of quality but at the same time they improve relationships between doctor and patient by fostering a sense of ownership by both the care giver and the care receiver.  By having each appointment be a minimum of half an hour, instead of the usual ten to fifteen minutes that is the norm in many practices, and by limiting the panel size of each primary care provider to no more than 800 patients, instead of the usual 2,500 patients in primary care practices, they are able to create a care model for each patient and for each primary care provider that maximizes the value of the primary care/patient link.  This is in contrast to the volume and production norm in most primary care practices that makes real relationships difficult to develop and maintain.  Patients can communicate with their health professional by phone, by email, or in person and receive the same time and attention.  They can reach a group health professional 24 hours a day, 7 days a week.  In the provision of primary care, they are part of this Relationship Revolution. 

Good Eggs is a company started by a group of young idealists, including my son Rob that has grown into a team of more than fifty people in four cities around the country.  Good Eggs mission is to “grow and sustain local food systems worldwide”.  Using industrial and advanced technological techniques, they are bringing locally sourced groceries from local farmers and food makers direct to people’s homes; the groceries are picked and prepped to order.  They are recreating the relationship between the farmer, the bread maker, the local food preparer and other food artisans that occurred when one went directly to a farm to talk to the farmer while picking up fresh food.  Relationships are formed with the producers of this food and the pride and quality that the people who produced your food have is fostered while at the same time the access and quality that is brought about by industrialization and systematization is maintained and improved.

At Accolade, we have created the new profession of Health Assistant.  With health care being so fragmented and requiring the interplay of insurance, regulations, primary care, specialty care, diagnostics, therapies, medical equipment, and other personal and social factors, a professional is needed.  Physicians and medical practices do not have the details and the knowledge of their patient’s disparate financial, insurance and work related factors while a Health Assistance has access to all of these puzzle pieces and the skills and training to coordinate all these factors for people in need.  We have created the profession and the systems to support that person and their Health Assistant as they go through the health system.  We offer the personal relationship that is sorely needed when one is in need of health care help while we foster the consistency, availability and affordability that is the promise of better systematization.  We are on the forefront of the Relationship Revolution. 

Health care will benefit from the industrialization that is now taking place some 200 years after the Industrial Revolution started.  However, in health care, it is even more important to maintain the personal relationships that are inherent in the caring fields of medicine, nursing and other health professions.  This requires a Relationship Revolution as much as it requires an Industrial Revolution.  It is far too easy, in our zeal to create reform, access, and a minimal level of quality to ignore the relationships that underscore each and every health care interaction.  Health professionals have a mission to treat everyone as if they were family, as we also take full advantage of the most up to date information and communication technologies.  This will fulfill the promise of improving care for all of us.  

Culture and Medical Care

It is now 25 years since Lynn Payer wrote “Medicine and Culture: Varieties of Treatment in the United States, England, West Germany and France”.  Published in 1988, Ms. Payer’s book imparts a message that should be repeated frequently.  The message is that medicine is cultural and not only scientific.  Despite the fact that different countries have the same results as measured by mortality rates, the care differs significantly in the types and quantities of drugs used, in the kinds and numbers of operations performed and even in the definitions of what is “within normal limits” and what requires treatment.  She made the observation that these differences in the approach to illness can be explained by differences in culture and values ingrained over hundreds of years. 

Ms. Payer wrote this book while she lived as an American in Paris, working as the health and science reporter for an American newspaper.  She had lived her whole life in the US, having been born in Kansas and had then spent 8 years in Paris working and writing.  Ms. Payer died too soon in 2001 at the age of 56 from breast cancer. 

I find myself picking up and re-reading her book from time to time to get inspired by the simplicity of her message and the profound implications of what she had observed.  So much of medical decision making is cultural and values driven.  Even though medicine has a scientific backbone, the way the science is used by doctors and patients alike, is based on values and trust.  Culture is important because therapeutics must be based on a trust bond between health professional and patient.  That trust bond is built by understanding and communicating values and cultural norms in a way that reflects respect for and autonomy of the person in need.  If you don’t understand and accept the differences of people in the four western democracies that Ms. Payer describes in her book, you cannot understand and accept the differences in people from far more diverse cultures.  In order to be effective in truly touching that person in need and foster healing, a health professional must meet that person on their terms.  That holds true for all cultures around the world and also holds true for differences in cultural norms in different regions of the United States.  It even holds true for different subcultures related to schooling, profession, and socioeconomic status. 

A recent case in point at my company Accolade brought all this to mind.  A young woman from an English speaking country was transferred to the United States by her company.  This brilliant scientist found herself in the exciting yet daunting position of gaining a promotion but also having to move to a new culture.  Language was not an issue however changing cultures can still be quite difficult.  Her Health Assistant at Accolade had been helping her intermittently with understanding her health benefits and her health plan as this was totally foreign to her since her move to the US.  This stress was taken to a new level when she became ill and was admitted to the hospital.  In the hospital, the cultural challenges intensified.  She was told that she had to have a procedure and that without the procedure, treatment could not be initiated.  She then asked what the complication rate of the procedure was and was told that she would do fine, and that the complication rate was only 1 in 100.  As she was in a teaching hospital, the message was given by a doctor in training, a resident, and the doctors appeared to her to change on a daily basis.  She felt alone, frightened, and even in danger.  For a scientist used to working with quality parameters of 1 in 250,000, 1 in 100 seemed barbaric.  She interpreted this as meaning that since a doctor in training, who was not very well trained, was going to do this procedure they expected it to be much riskier than it had to be.  They also told her that she was too sick to be discharged from the hospital and that she either had to have the procedure or just get sicker.  She had no options.

 

She felt like a prisoner.  She felt as though there was no one on her side.  At that point her Accolade Health Assistant®, Kate, was the only person she could turn to.  The patient was speaking to Kate, who she was starting to trust, on a daily basis.  Kate, understood that she did not have all the expertise in that young woman’s cultural background that she needed so she turned to another Accolade employee, Mary, who is not usually on the front lines with people in need, but who came from the same region of the same country as this young woman.  Mary immediately coached Kate on communication norms that would help to build trust. Subsequent phone calls reflected that cultural intelligence in communication.  After a few calls, that trust bond was strengthened in order to help this young woman through her illness. Mary also began to talk with her on the phone creating more trust for the entire team at Accolade.

 

The end result was a patient who felt supported and empowered and who was able to subsequently be transferred to another hospital in order to have a fresh start in building trust with a new medical staff in order to move therapy forward.  It did turn out in the new hospital that the previous well known teaching hospital had been giving her medication in doses that was toxic to her liver.  That toxic effect was reversed and she started to improve. 

I think about all this and wonder if evidence based guidelines which are purely based on science, and not on culture or values, leave out a critical point.  I wonder if the push for productivity that forces doctors and nurses to spend less time finding out the values and cultures of the people in need sitting in front of them will ultimately lead to worse care.  I wonder if we can maintain and even improve our ability to effectively treat people in a way that values them as autonomous independent people when we seem to be pushing in the opposite direction, even with the best of intentions to try to build a more sustainable system from a cost perspective.  Ultimately, medicine is personal with one person touching another in a way that is intimate, honorable, and respectful of all that the person in need is as a fellow human being.  We should accept nothing less as health professionals or as patients.