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.