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.
I really try to stay compassionate with people, even when they are difficult. Sometimes, they sabotage themselvesby turning on me in anger when I am truly trying to help. Honestly, if I have someone bleeding out in the next room, that patient is going to get priority over the one who wants his BIPAP mask adjusted every 10 minutes but who is otherwise stable. This does not mean that patient is going to be forgotten about and not checked on. It does not mean I’m not going to do my best to make sure he’s comfortable. But I can’t be in two places at once. That’s just simple physics. And I am finding that the general public increasingly does not set realistic expectations for nurses. They don’t care that there is a life and death emergency underway next door, and that we have to prioritize. This is one of the reasons nurses suffer from compassion fatigue. We want to do everything people expect of us. But people are often not realistic in their expectations. I think crisis counseling would help a lot. Most of these people are genuinely scared. They’re not mean people by nature. They are scared and need some answers and a safe block of time to vent. So they are literally in a crisis. Which is why the hypothetical Mr. BIPAP in my earlier reference wants his mask adjusted every 10 minutes. He’s been hit with the reality that he cannot move air effectively without a tight mask blowing air into his face. That is scary stuff. And if his nurse is obviously running to the same room,accompanied by other nurses, in his mind we might not notice if he dies. He needs reassurance that he is okay. A LOT of reasurance. But his nurse may not have time to really be present in the way he needs her to, if she has another patient who will face imminent death without multiple aggressive measures being taken at the same time he’s being hit with the reality of his condition. It takes time and energy and focus to avert a life-threatening emergency. Then, we have to make the time to document what we did in the emergency. It’s not that we don’t care or think our more stable patients don’t matter. They do. We just cannot be all the things they need us to be all the time. I hate that, too. I really do. It is a huge source of frustration for me, when I know that someone needs more of me than I can humanly give them at that time. I can’t fault them for needing what they need. But I can say health care institutions are not meeting these very real emotional needs. And the nurses cannot fill in all the gaps. That’s why we need some form of crisis intervention in the hospital setting.
“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. ”
This hits the nail on the head. We see the pathologies of people and/or their relationships when illness strikes. The overly anxious middle aged man who is worried to death about a rash–the grandmother who has twenty family members crowded into her ICU room and every one of them wants something…meanwhile I am trying to save a life next door. They press the call bell, they come out looking for me, they complain if they don’t get a Pepsi in thirty seconds. It would help us greatly to have nurse techs to handle these things but our hospital won’t pay for them…even though they will pay to install high tech equipment like an electronic ICU….
And Disillusioned Dixie Nurse shows why the idea of “patient centered” care is a trap. Yes, patients are the reason we are there—but if each individual patient thinks we can “center” on them all day long, they will be angry and complain, even if we are doing our jobs correctly.
If health care professionals sometimes make allowances for “difficult” patients, they too often have little or no tolerance for “difficult” family members, who are scared, confused, trying to find out what is going on, and trying to protect their ill family member from all the bad things that happen in hospitals and nursing homes. HIPAA has been a convenient (if wrongly interpreted) excuse to exclude family members from vital information about the patient. Yet when it comes time to take the patient home (with feeding tube, ventilator, surgical wounds, a dozen medications, or any combination of these), the family is suddenly supposed to be equal to a trained nurse and to manage this care while working, taking care of other family members, and managing a household. Working with health care providers in 44 organizations over the past 3 years, I have seen a major change in attitude and behavior once providers start to understand why family caregivers are so stressed and how best to prepare them for their daunting responsibilities.
I could not agree more about HIPPA and about outsourcing care to the family. We are supposed to somehow pick up what nurses take years to learn in a few quick minutes taught by someone who is so pressured to advance throughput that we are in total jeopardy. I am glad to know that things are changing thanks in part to your work Carole.