More on The Difficult Patient

People have made some very interesting and important comments on my latest post.  I want to add something here and also reiterate that I am not talking about patients who are truly abusive, or in other ways very difficult to care for.  That said, I want to add something about the conditions that may lead Health Care Professionals (HCPs) to view patients with legitimate needs as difficult.

One barrier is, of course, workload and fatigue.  Whether it is in the hospital or any other workplace, like primary care, people who are too tired, who have not eaten, and who have too much work tend to be irritable and have trouble attending to others.  In healthcare settings, professionals and other staff are constantly expected to act in a professional manner when, as Lucian Leape and his colleagues argue, their institutions do not treat them respectfully and ask them to work too hard and too long.  It is totally clear – and the evidence backs this up – that HCPs of every sort are taking care of too many patients (see my book Safety in Numbers on the issue of nurse staffing ratios and patient care) and, at least in North America, working hours that are way too long.  Health care professionals may also disrespect themselves and their patients when they choose  (see Trinkoff and Geiger Brown in First Do Less Harm: Confronting the Inconvenient Problems of Patient Safety)to work long hours for any of a variety of reasons (they want to earn more or prefer to lessen their commuting time by working three days rather than five in a row).  And here, I am not talking about the single mother who has to work two or three jobs to make ends meet  or someone who lives in a rural area and has no option but to drive long distancs to work.

Both the institutions they work in and the professionals themselves need to act on the scientific evidence that has now documented that the human brain does not function “professionally” when fatigued, famished, or when constantly interrupted and asked to multi-task.  This means we will have to figure out ways to apportion our healthcare dollars in a way that allocates financial resources to care rather than profit, marketing, and administration.

Clearly, workload and fatigue are major barriers to caring for patients who have legitimate needs without stigmatizing them.  I believe there is also, another reason why some HCPs may so easily view  patients who are not abusive as “difficult.” This has to do with what I think of as the paradox of expertise or experience.

I think the fundamental problem with the patient-centered- care, putting- the patient- first philosophy is that it ignores or fails to acknowledge the intrinsic paradox in the caregiving professions. This paradox stems from the fact that, over their careers,  nurses, doctors and others in healthcare (I absolutely refuse to use the term “allied health professionals”) will care for thousands of patients.  What is unique to each patient, who is an N of one,  is, all too often routine to the professional who has seen this problem over and over again.  What we, as patients, complain about, or consider so terrible, may appear to be far less significant to the caregiver who is taking care of a total train wreck lying in the bed several rooms down the hall. As patients, we may even wander by that room and see that train wreck lying in the bed surrounded by machines and sprouting a literal field of tubes and lines.  While we may intellectually recognize that that person is far worse off than we are, when we return to our rooms and deal with our pain and fear, we are mired in our own reality and comparisons provide little relief.  What we need is acknowledgment – as in “that must be really hard.”  We don’t necessarily need tears (although that is sometimes appropriate) or hugs, (ditto), we need someone to legitimate our concerns rather than blow them off.

Patients may also put unfair burdens on HCPs.  We may want them both to have “all the answers” and fix the problem and to be kind and caring and attentive not only to the physical issue but to our emotional needs.  We want the kind of expertise that goes way beyond the N of one but we also want to be treated as utterly unique.

But it may not be easy for caregivers to do that when they are overworked, exhausted.  It may also be difficult because HCPs with experience have a different perspective on their patients’ problems than novices.  New graduates of health professional schools are often very kind and caring (and very critical of their “callous” and battle scarred teachers and mentors) precisely because they do not have much expertise and tend to view patients as an N of one.  Their concern may be helpful to the patient but they don’t have the expertise needed to manage all the dimensions of patient care.  Trouble is, when they do have that expertise, will their ability not to think of patients as “difficult” be compromised.  This is why any discussion of patient engagement, patient centered care, or caring must include a discussion of this paradox of expertise.