Living with Illness and Patient Engagement

“The art of medicine consists of amusing the patient while nature cures the disease”  Voltaire (1694-1778)

This month we are hearing from many sources that patient engagement is the blockbuster drug of this decade.  In Health Affairs, the entire issue has beendedicated to this topic with Susan Dentzer, the editor-in-chief stating in herintroduction to the issue that “the emerging evidence is that patients who areactively involved in their health and health care achieve better healthoutcomes and have lower health costs than those who aren’t.”   The organization, the Society forParticipatory Medicine, of which I am a member, has seen its list serv discussion light up with passion around just what is meant by patient centeredness and patient engagement and how far it should go in terms of patient control of their own diagnosis and treatment.  Yet I worry.  I worry that all of this is still attempting to find a simple formula, or simple buzz words, to a complex issue that is perhaps not only about patient engagement but also about the autonomy and dignity of humans.  It also begs the question of patient engagement with what or with whom?  Is it engagement with their health and their illness or engagement with the professionals involved in their care or both?  Can we have engagement with professionals in this day of fifteen minute physician appointments and our emphasis on efficiency?  Part of the question, for me as a physician then, is what the physician’s role is in patient engagement?  And does that role have any additional role in elevating the dignity of man?

While this may sound a bit grandiose and perhaps delusional, this does relate to the way I, and my generation of physicians was trained.  Part of medical training then was to “live” with the people who were sick.  People were kept in the hospital for the better part of an illness and the interns and residents who cared for them lived there with them.  That led to 72 hour shifts and too often, residents and interns who made dangerous decisions due to lack of sleep.  It also led to people being in the dangerous hospital environment in which hospital borne infections tend to overwhelm people when they are already weakened from their primary disease.  Today’s approach to medical training eliminates those dangers and is better for both doctors and patients.  But I do worry that the approach to “living” with your patients and truly understanding on an emotional basis, what was involved in being deathly ill, may be lost.  When that is lost, we may also lose the physician’s ability to engage with their patients on the human level that is so sorely needed. 

Disease and illness is time based.  By living with people who are sick, one truly understands, what is referred to as the natural history of disease.  Every illness has a natural progression and the role of modern medicine is to try and influence that progression in a positive way.  It may be to accelerate the healing that would ordinarily occur or to change the natural history would otherwise lead to death or chronicity.  It may even be, as Voltaire reminds us, simply to be with the patient and be positive at a time when it is hard to see the light at the end of the tunnel of illness.  Because it is time based, it requires a relationship between a health professional, usually a doctor (but in this era, more and more it can be a nurse practitioner or a physician’s assistant or a different health professional), and the patient.  The best care does occur when the patient is engaged and is actively involved in their care however the best care also occurs when a trusted health professional, who knows the person and not only the patient is as involved and engaged in the care as the patient herself. 

Too often, when we speak of patient engagement and patient centeredness, we are speaking of a zero sum game that attempts to make the health professional into an exalted expert computer system (or perhaps to just use an expert computer system and eliminate the doctor or nurse) instead of acknowledging the role of a trusted and caring professional to engage with the patient.  We attempt too often to say that the patient, as an autonomous independent person doesn’t need anyone except themselves.  But the person in need does require help.  The person in need does require an expert professional to engage with in order to obtain the best care. 

The physician must understand the person behind the patient well enough to know how to form a partnership that is based, less on the disease the person has and more on who the person is. It is only through this partnership that the physician can help keep the patient calm and allow for the natural history of disease to progress in such a way as to foster healing.  The expertise of the health professional impacts the disease when it is done right but only when the patient trusts the professional and believes that he or she is acting in a way that is consistent with the patients’ beliefs, values and desires.  That is when true engagement occurs.  That is when the involvement of a person in their own care is able to improve the care and also elevate the dignity of the person who is ill. 

Patient engagement is the blockbuster drug but let’s not make it a chance to push the burden of illness onto the patient alone and to abandon the person in need just when they could benefit most from a helping, caring, knowledgeable hand. 

Helping Your Doctor Stop and Think

"Men more frequently require to be reminded than informed."
Samuel Johnson: Rambler #2 (March 24, 1750)

It is always a good rule of thumb to stop and think.  In medicine for physicians who are treating patients, it is a necessity of good care.    For good medical care to occur, the ability of a physician to stop and think is dependent on their ability to truly listen carefully to each and every patient in a way that recognizes their unique problems and circumstances.  Physicians are taught that way but in today’s world in which time is limited, they sometimes need to be reminded. The prepared, informed, confident patient is in the best position to remind the doctor of the need to slow down, listen and think.

 

In a recent article in a local newspaper, Dr. Murray Feingold, who is physician in chief of the Feingold Center for Children, makes that point.  (For full disclosure purposes, The Feingold Center was previously known as the National Birth Defects Center and my wife, Dr. Rhonda Spiro, was associate physician in chief working closely with Dr. Feingold.)  In his article, Dr. Feingold laments the fact that less time is being taken to listen to patients.  He also notes that computers may compound the problem as the physician may be more focused on data entry and the computer, than on the patient.  Dr. Feingold even talks about one hospital that prohibited the use of a computer in the exam room as they found it took away from the personal connection with the patient.  It is sometimes hard to stop and think when you are just looking to the next field that you have to fill in an automated record. 

Like any rule, the “stop and think” rule has certain exceptions.  The reason that the training of health professions includes drilling on certain emergencies is to ensure that the treatment of a life threatening situation that is time sensitive is performed automatically.    There is an old joke that makes this point.  An ER doctor, an Internist, and a Surgeon go duck hunting.  The Surgeon looks up and says, “Look, a duck!” and he shoots.  The Internist looks up and says, “Look a duck...or maybe it is a mallard or a goose!”  And then he finally shoots.  The ER doctor looks up and shoots and then says, “What the hell was that?!”  The ER doctor is trained in certain situations to act reflexively, such as acting to save someone who is bleeding profusely after a bad accident and whose life depends on very swift action.  In those types of cases you want a physician who acts even before taking the time to think too deeply. 

    

But most of the time, the ability of a doctor to stop and think is important and may be critical to getting the best care.  For many people we help, our ability to coach them on how best to encourage their doctor to stop and think, is paramount to their having a productive trip to see the doctor.  

You may believe that doctors will always stop and think however, when a physician is seeing many patients a day and most of them are “routine” and time is limited, it is hard to really think about each and every patient in a unique way.  This past week I saw my cardiologist for a routine, yearly appointment which actually occurs about every year and a half as I keep putting it off because I have no present cardiac problems.  I have a history of coronary artery disease and had a coronary stent placed in 2001.  My cardiologist is a caring, smart professional who I have, in the past trusted with my life.  My goals for this appointment were to discuss with him my medications to see if we should change or perhaps eliminate some of those medications.  In his busy day, however, I was healthy, doing well, and he just wanted to get to the next patient who probably had more immediate needs than I did.  I did not get the thoughtful doctor that this cardiologist has been in the past.  His attitude was you are doing fine so just keep doing what you are doing and I will see you next year or so.  I do not know if he had an emergency waiting for him at the hospital or if he was just harried from a busy day and from personal life matters.  I only know that no matter how hard I tried, I could not engage him in the discussion I needed.  I could not get him to stop and think and really listen to my concerns about being on medications, all of which have potential side effects, and my potential ability to do without some of them. 

So I now consider my next move which will probably be to call him and talk to him about it and ultimately to switch cardiologists if I am not comfortable with his listening to me and really thinking about me.  When you are a patient, it should all be about you (or me if I am the patient).  Don’t be embarrassed by that.  Don’t be self-conscious about it.  It really is all about you when you are the patient.  You go to a physician in order to get the benefit of their knowledge, their experience, their skills, and their active evaluation of you, however healthy or sick you are at that moment in time. 

So a real trick for people, who you help, is to give them ways to encourage their doctors to stop and think.  There are a number of techniques for accomplishing that:

1. Help them develop questions that they bring with them to an appointment.  They should have them written down and they should make it clear with body language and bearing that they do not plan to leave until the list of questions is answered in a way that is understood. If the doctor leaves the room before they are done, they should politely ask his staff, who will probably come in to usher them to a different room or to see them out, that they need to continue talking with the doctor to get questions answered. 
2. Coach them to be honest.  If they have to say, “Doctor, I feel like you are not listening to me and you are rushing out of the room instead of helping me understand what I need to understand in order to follow your advice”, encourage them to just say it.  They should not feel embarrassed or feel ignorant. 
3. Help them be confident.  It can still be a bit intimidating to go to the doctor.  When your clients are confident and less likely to be intimidated, they are likely to be better at encouraging their doctor to stop and think. 
4. Tell them to be pleasant but direct.  Getting very excited and angry will only get someone labeled as irrational and that is harmful to getting the best care. 
5. Ultimately, if your client is unsuccessful, they should think about switching to another doctor.  A doctor patient relationship is personal and sometimes two people are just not a good fit.  While technical knowledge is important in a doctor, the ability to communicate with a specific individual is just as important.

Good, thoughtful physicians know the importance of listening, and thinking as critical parts of diagnosis and treatment.  As Dr. Feingold put it in his article, “I could not practice medicine without a computer because so much information is now available it is impossible to remember, or even be aware of all of it.  However it is still the findings culled from the history and physical examination that remain the mainstay of leading the patient’s physician to the correct diagnosis.  That means going back to the basics, taking the time to listen to the patient and doing a thorough history and physical examination.  After gathering all of this essential information, then new high tech studies can be used more effectively and efficiently.”

So help your clients help their doctors to be better doctors.  Help them remind their doctors to stop, listen and think.  

Stories, Science, Disease, and Illness

The science of medicine has made unbelievable strides in understanding disease and even controlling it.  However there is a difference between disease and illness.  Illness is the personal experience of disease and it must be understood through stories as well as science.  It takes stories to help people through their illness and to apply knowledge built through data and inquiry into effective treatment and effective decision making.  Creating the right structure to study the effects of stories can only help us in understanding the very personal stories of each and every person who has to deal with illness.

So I was very excited when I read an article entitled, “All Stories Are Not Alike” published in the journal Medical Decision Making.   The article acknowledges the strength of people’s stories and creates a framework for understanding how stories help people make medical decisions.  Stories are real ways to communicate medical facts and make them understandable for people in a personal, real-world way.  Stories can be used to point out scientific data that may be helpful to that person’s individual circumstance.  And just as science has a structure and a language, so do stories.  The article sited makes a wonderful effort to better define that structure and language. 

When each of us thinks about the story of our own life, or our own illness, it is rarely if ever about only one factor and almost never about the disease!  Nobel Prize winning author Elie Wiesel recently wrote a book entitled, “Open Heart” which tells the story of his emergency heart surgery at age 82.  The book is his story, so it is only peripherally about the proper way to treat heart disease.  Real life gets in the way of his treatment as it does for all of us.  When his cardiologist calls him breathless and tells him to get to the Emergency Department of Lenox Hill Hospital immediately and that a team of doctors is waiting there for him, the brilliant author writes that he does not.  “And so I nevertheless steal two hours to go to my office.  I have things to attend to.  Appointments to cancel.  Letters to sign.  People to see – among others a delegation of Iranian dissidents.”  For Wiesel at that moment, his own commitments are top of mind rather than his urgent need for medical care.  That is no different than the mother who, even when extremely ill will worry first about picking up her children at school.

In his book Wiesel talks about the love of his family and own moral struggles instead of the best practice guideline for coronary artery disease.  He writes about the visit of his five year old grandson when he is still in the hospital, with his grandson saying, “Grandpa, you know that I love you, and I see you are in pain.  Tell me: If I loved you more would you be in less pain?”  Wiesel then writes, “I am convinced God at that moment is smiling as He contemplates His creation.”  That is more important to Wiesel’s story than the technical aspects of his disease. 

His story is not all that different than other’s stories (although his eloquence in voicing it is unique) and our ability to listen to people’s own stories, relate them to the care they need, and address them using data, medical studies, and “facts” are what makes successful treatment of illness and not only disease. 

The key to really helping people when they are faced with illness is the ability to understand all of the elements of their illness, even if it includes a feeling of commitment to meet with a delegation of Iranian dissidents.  It involves the skills of listening to their story and then adding into the framework of their story the medical facts and guidelines when and how they apply.  It is in letting the story unfold in a way that reflects and respects the values of that person.  Only then are scientific medical facts useful and helpful.  Only within the context of the story can medical science be used to lift the human body and spirit. 

Clinical Guidelines, Patient Complexity and Trust

“It is much more important to know what sort of patient has a disease than what sort of disease a patient has.” Sir William Osler. 

The use of guidelines in medical practice is necessary for good patient care.  Guidelines have always been with us in practice, although it is only in recent years that the “best practice” norms that all physicians and nurses are taught have been formalized into guidelines.  What is a guideline?  According to the Institute of Medicine (IOM) and as used by the federal government National Guideline Clearinghouse, “Clinical practice guidelines are systematically developed statements to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances.”

 

A recent article in the Journal of the American Medical Association points out that, to be effective, guidelines must be trusted and widely accepted.  The authors discuss that guidelines should be developed through a rigorous, standardized process so that they are consistent and reflect the best, most up to date thinking in order to build and to deserve trust.   However even the most rigorous approaches to guideline development will not guarantee trust if they are then used in ways that foster suspicion.    There is almost a “bait and switch” quality to developing a guideline to assist practitioners and patients and then using them to determine if a practitioner is high or low quality, to set insurance coverage and to determine reimbursement.The use of the guidelines in this way can be seen as threatening and as regulating rather than assisting.  

The National Heart, Lung and Blood Institute is careful topoint out in their definitions of guidelines that “The recommendations are not fixed protocols that must be followed.  Responsible clinician’s judgment on the management of patients remains paramount.  Clinicians and patients need to develop individual treatment plans that are tailored to the specific needs and circumstances of the patient.”

But that is not how they are applied.  The various ratings tools often used by the health plans and other third parties, can label a practitioner as a “bad doctor “if guidelines are not adhered to.  The insurance carriers and the government payers can withhold payment if you deviate from the guidelines.  Treatments that deviate due to a caring physician trying to “tailor to the specific needs and circumstances of the patient” can be labeled as “experimental” or not in keeping with the “medical policy” that governs the reimbursement and coverage.  While there are appeals mechanisms in place, they are often difficult, time consuming, and may be perceived by the treating doctor and patient as being biased towards the health plan or other entity.

The use of guidelines as de facto standards for payment and quality rating purposes has positive aspects.  For physicians as a profession, the adherence to guidelines within certain parameters may be a proxy for quality especially in view of the lack of other available metrics.    However the erosion of trust that occurs when they are used in that fashion is real and needs to be acknowledged and addressed. 

One of the reasons that guidelines are not standards is that they do not take into account the complexities of real patients.  The practice of medicine is, more often than not, driven as much by the complexity of the individual patients as it is by the complexity of the disease being treated as was noted so eloquently in the quote from William Osler above.  In an article in the Annals of Internal Medicine published in December 2011, the authors defined five domains of patient complexity as reflected in the attached chart from their study.  

  

Only one of the five domains, the “medical decision making”, is in the realm of clinical guidelines.  Even that domain is not fully addressed by disease specific guidelines as diseases usually do not occur in medical isolation but in the context of other chronic illnesses, other acute illnesses and other medical risk factors that may not be reflected in one specific medical guideline.  The patient personal characteristics, the mental health issues, both primary and secondary due to the stress of the medical illness, as well as the very real life socioeconomic circumstances may make the following of a guideline difficult to impossible. 

In this reality of patient complexity, clinical guidelines are extremely valuable when used to help the patient and the doctor as long as they engender trust.  When, instead they are seen as just interfering in good patient care by pushing a doctor into the untenable position of adjusting to the individual needs of the patient or being labeled as practicing poor quality care, we do all a disservice.

 

Guidelines are a very positive force to doctors, nurses, other health professionals and especially to patients if they are trusted however their use as a way to determine reimbursement and benefits coverage can seriously erode that trust.  We need to find ways to measure physician performance and drive payment parameters without compromising the trust needed for guidelines to be used.    

A Systems Engineer Gets Sick

An excellent “A Piece of My Mind” article in the Journal of the American Medical Association entitled, “A Systems Engineer Meets the System”by David H. Gustafson, PhD is a reminder that while systems are important, people caring for people remains the key to good clinical outcomes.

Dr. Gustafson starts out his article by identifying himself as a systems engineer, whose life work has been, and remains, organizational change and quality improvement in health care.  He then describes his own experience as a patient with severe heart disease and his ongoing medical journey that includes a new heart courtesy of a heart transplant.  He identifies four elements of great care:

Commitment to Greatness: The health care professionals caring for him all did not just consider health care to be a job but instead brought energy and commitment to his care that went beyond work hours and normal work protocols.  They were driven by a mission for excellence that could overcome whatever obstacles arose. 

Ownership: The excellent medical teams that helped him all had a sense that whatever happened to him was their responsibility.  As he phrased it, “…, I knew the staff “owned” me.  I wouldn't be passed along somewhere else.”

 

Advocacy: Dr. Gustafson’s wife was with him constantly and she was always supported by a friend, only a phone call away, who is a physician.  His wife acted as his bodyguard, watching everything that was done, and his voice in issues as small as the cleanliness of his room and as large as the need for invasive tests.  The friend supported his wife and acted when needed as a “boundary spanner”.  He was there to remove barriers (as we say at Accolade) when they arose as they often do in health care and to coach Dr. Gustafson's wife. 

Caring: Dr. Gustafson puts it this way, “Caring means commitment, but it also includes having fun; being friendly; and getting to know other people as human beings and not just as clinicians, patients, housekeepers or administrators.”    All of us want to be seen and heard as individual human beings with our own thoughts, relationships, needs and values and must be recognized as such for true caring to occur. 

At Accolade we have built an organization and a profession whose main role is to act as the “boundary spanner” and the “advocate” and ultimately, the overall Health Assistant for every issue that has to do with accessing the best health care at times of need.  We put principles of “ownership” and “caring” into all of our client relationships.  By doing so, we improve care and this decreases risk to the individual patient and waste in the entire health care system.  

A Hospital is a Dangerous Place

The latest New England Journal of Medicine includes the description by Dr. Harlan Krumholz of a new disease: Post Hospital Syndrome.  In the article entitled, “Post-HospitalSyndrome – An Acquired, Transient Condition of Generalized Risk”, he notes clearly and concisely what most people in medicine have always believed but never voiced in this manner.  Just being in the hospital makes you sick. 

As he states it, “Patients who were recently hospitalized are not only recovering from their acute illness; they also experience a period of generalized risk for a range of adverse health events.”  To put it simply, the experience of being in the hospital puts you at risk for a virtual cornucopia of illnesses that often are totally unrelated to the reason you were admitted to the hospital in the first place.  He backs up this contention by reviewing the reasons that people are readmitted after Heart Failure, Pneumonia, COPD and Gastrointestinal problems.  It turns out that most of the time readmission is for causes other than those diagnoses that drove the need for hospitalization in the first place.  This chart from Dr. Krunholz’s article makes that vividly clear. 

When people are in the hospital, we, that is the health professionals who care for them, deprive them of sleep, disrupt their sleep and wake rhythms, often do not feed them in preparation for tests and procedures, create pain by poking them and prodding them, confuse them, give them medications which all have side effects, and keep them in bed which results in deconditioning their muscles.  Then we send them home saying “You are better”.  Numerous studies have shown that people who lose weight in the hospital are more likely to be readmitted.  At least part of that weight loss is related to the poor nutrition and the muscle depletion that comes from lying in bed. 

When we send them home, it is often with little coordination between the care givers in the hospital and those in the community, such as the primary care physician.  “Improvements” in health care delivery, such as the use of hospitalists, has fragmented care and impaired our ability to help peole through the transition from hospital to home.  The old saying that people are sent home “sicker and quicker” is often true and contributes to this “Post-Hospital Syndrome”. 

They are also sent home confused as the sleep disorders beget sleeping pills and the pain begets pain pills.  We then send people home either on the pills, some of which may be unnecessary when they are in their own beds without IVs sticking out of their arms, or on too few pills so they are racked with pain and fear despite having been “fixed” in the hospital.  Then we wonder why they have to be readmitted for the confusion and for mental status changes.

 

So what is my advice for patients and their families?

• Be a demanding patient in the hospital.  Do not meekly accept being awoken in the middle of the night, or being in a room in which there is noise and distraction.  Ask why being disturbed while asleep is necessary and what alternative plan can the doctors and nurses devise. 
• Do not meekly accept being starved.  If you are made NPO (nothing by mouth) prior to some test, specifically ask why and how long before you can eat.  After a test demand being brought food even if it is not the scheduled time for the floor. 
• Question everything.  What are these medications for, what is the blood test for, and why is that CT scan being done must be questions to ask constantly.
• If you are strong enough, get up and walk.  If you are not strong enough, aks a nurse to get you into a chair and to help you walk.
• If you are well enough, get dressed.  (Staff in the hospital will see you with more respect and as more “human” rather than the patient in room 3.)
• Have a bodyguard.  Have someone you know and trust, like a family member, stay with you as much as possible to help you and to advocate for you.  They should be coached beforehand so that they are assertive on your behalf. 
• Have an assistant or an advocate available by telephone.  This should be someone who understands the health care system and can help you be assertive and help you know the right questions to ask at the right times.  Your on-site “bodyguard” (see the previous bullet point) may not be enough of an expert to fill that role.
• When you go home, insist that the nurses and doctors call and report to the doctor who will be caring for you as an outpatient.  It is even better if you can be part of the call and listen in.  The transfer of the knowledge of your hospital stay is critical to your health. 
• Insist on taking copies of your records home with you.  Even in this day of electronic medical records, the staff can print out records for you to take with you. 

Finally the best way to avoid Post-Hospital Syndrome is to avoid going into the hospital in the first place.  While a hospital stay is sometimes unavoidable and can be lifesaving, it is also risky and can leave you sick in ways that are totally different than your reason for going in.   

Who's in Charge Here?

This week’s issue of the New England Journal of Medicine has two “Perspective” pieces having to do with decision making and the difficulties that modern medical advances and modern health policy advances have inadvertently created.  I read these and can only think of the immortal words of Oliver Hardy talking to Stan Laurel saying, “Well, here’s another fine mess you’ve gotten me into”.  In our zeal for ever more expertise that comes with medical specialization and for ever more organization for our unorganized system, have we created a “fine mess”?   Are we losing the ability to help our patients make choices that are consistent with their own values and in keeping with the best medical knowledge?

The article by Stavert and Lott entitled, “The BystanderEffect in Medical Care” accurately compares the problem of having multiple specialists to the bystander effect which is the human tendency to be less likely to offer help in emergency situations when other people are present.  Poor communication and coordination between medical professionals can lead to each physician only being focused on the specific disease they are involved in treating and not the entire patient.  The old concept of the primary care doctor being the “captain of the ship” has given way to primary care doctors who no longer even enter the hospital and leave that care to the hospitalists, intensivists, and other specialists.  For complex outpatients, the primary care role can quickly devolve into a triage role.  The specialists who are focused on their small piece of the puzzle often don’t truly coordinate with the primary care physician.  The primary care physician is so busy just seeing patients that the coordination and the compilation of the facts and opinions gleaned from the specialists often never happens.   Even if the coordination happens, it is then never communicated to the patient and the family.  The authors suggest mechanisms to improve communication between individuals’ clinicians by supporting initiatives such as the TeamSTEPPS (Team Strategies and Tools to Enhance Performance and Patient Safety), an initiative developed by the US Agency for Healthcare Research and Quality.

The article by Oshima and Emanuel entitled, “Shared Decision Making to Improve Care and Reduce Costs” points out that the Affordable Care Act (ACA) calls for greater use of shared decision making in health care and that the implementation of that part of the law has stalled.  They call for more use of decision aids and more use of incentive payments to encourage providers to better use those decision aids and for funding the development of better shared decision making tools.  They make the strong argument that a good starting point is to begin with are the 20 most frequently performed procedures and to require the use of decision aids for those procedures.  They further argue that full Medicare and Medicaid reimbursement should be contingent upon those decision aids being used. 

I find myself reading all of this and agreeing with the analysis but wondering at the same time, if the cures for the two diseases of “bystander” effect and lack of shared decision making are leading us into a morass of forms, requirements and process that will do little to really solve the problems.  The bystander effect, while suggesting the need for better teamwork still requires a single person who feels ownership of all of the patient problems.  Traditionally that single person has been the primary care doctor.  But putting more pressure on the primary care doctor to do all that coordination, compilation of results and opinions, and communication is hard to reconcile with the challenges of primary care practice.  The primary care physician still has to evaluate, diagnose and treat while seeing more and more patients and having less time with each patient.  I, like others, hope the medical home initiatives and the ACO movement brings incremental improvement but for me and my family, I also hope that I always have one person I trust who will be by my side whatever my problem or problems may be.  That person may or may not be the doctor.  In our system at Accolade, we have developed a new profession; that of Health Assistant, who communicates, educates, coordinates and advocates while not diagnosing or treating.  They take the time to be the one person at the patient and the family’s side during the duress of illness.

While decision aids may be necessary for better shared decision making they are in no ways sufficient (and the authors do not suggest that they are sufficient).  Many patients and their families just do not have the skills to use those resources most effectively.  They are often riddled with the anxiety and depression that comes with illness that prevents good use of such tools.  They often have real barriers that have to do with family, financial and work concerns among other types of “non-medical” issues that prevents them from making the best choices.  I wonder if requiring a provider to hand someone a booklet or asking a patient to watch an interactive video will make all the difference.  I have my doubts even as I acknowledge that these tools are useful when used together with other communication and support techniques. 

In this mix, we need more humanity.  We need more caring.  While more tools and systems certainly will help, I doubt that they are the whole or even the most important parts of the answers we seek.