Defining the patient’s goals of care

I moved to Florida three months ago to take a job as a primary care nurse practitioner in a clinic for the underserved and uninsured. This position followed four years spent as a home-visiting nurse practitioner working with high acuity, chronically ill patients in the Boston area.  I didn’t realize it would be such a transition to go back to taking care of patients in the clinic setting after spending several years caring for them in their homes, on their turf, and on their terms. Just as I was starting to feel I had a handle on this new job in this new setting, a patient threw me a curve ball.

Mrs. Jones, an 80-year-old woman with mild dementia, very poorly controlled hypertension, and diastolic heart failure, came into the clinic with her son, a middle-aged man who, when he wasn’t working local day labor jobs, was his mother’s primary caretaker. The reason for her visit was listed as “needing lab work” and she had not come to our clinic in over a year.

A few minutes into my conversation with Mrs. Jones and her son, I started to panic. The reason she “needed lab work” is because she was discharged from the hospital for an exacerbation of her heart failure, caused by hypertensive crisis, about ten days ago. The labs she needed were about a week overdue. Her son had had trouble finding transportation to the clinic, and this was the only day a friend could drive them. Mrs. Jones’ blood pressure was sky high. Her son was unsure about which medications she was supposed to be taking and when – because so many of them were changed on hospital discharge. He then remembered, during our visit, that a home-visiting nurse was supposed to be arriving at their house right then as we were meeting at the office. To top it all off, the friend who gave them a ride didn’t have much time and would leave them if they weren’t done when he needed to go.

Several minutes passed and I noticed that the only people talking were the patient’s son and I. Mrs. Jones hadn’t said a word.

The clinician in me was screaming, “How will I get her blood pressure under control? What’s going on with her fluid status and renal function? How in the world am I going to manage any of this in the next twenty minutes?” And, representing a total failure, “Is she going to be rehospitalized?”

I had to calm this inner-voice and remember the lessons I learned in my days as a home-visiting nurse practitioner in Boston. I needed Mrs. Jones’ help in restructuring the reason for this visit.

When I saw patients on their turf, it was almost natural to get a conversation going about the patient’s goals and the barriers to reaching them. For example, the chaos of a patient’s home might make it clear to me why she always lost her glucometer and the solutions I could offer to help her keep track of it, rather than simply reiterating the importance of monitoring your blood sugar. But you can’t see these things when the patient is sitting across from you in the exam room.

I knelt down by Mrs. Jones and asked her how she felt. “I feel great!” she responded. “Nothing hurts. I’m doing fine.” I asked her about her home life. “How do you get around?” “What types of activities do you need assistance with?” Then, tabling my own concerns, I got back to the too-often-forgotten goals of care. I asked her, “What is your biggest health priority right now?”

This may seem obvious, but it’s astounding how easily we can separate the medical from the social when a patient arrives for a visit. We live in a disease-and-treatment focused culture. Health care professionals don’t get the time or the reimbursement to properly address the psychosocial aspects of patient care. If we are to improve quality of care and decrease the cost associated with the frequent, preventable exacerbations of chronic diseases that lead to so many hospitalizations in patients like Mrs. Jones, considering the social and psychosocial determinants of health is not just a nice idea; it is an absolute necessity.

Mrs. Jones’ experience in the hospital and in our clinic initially might have felt like a whole bunch of people were just talking “at her,” making decisions about her medications, barking orders about daily weights and sodium restriction, and creating an ever-growing list of things her son needed to remember to do for her care. Without question, these disease-focused questions and recommendations are a vital piece of caring for patients; however, they represent exactly that: one piece of a larger puzzle. When these orders are given without a discussion of the patient’s understanding of her disease process, whether she has the resources and care structure in place to execute our orders, and most importantly, her desires and goals regarding her medical care, we are shortsighted and are surely setting our patients (and ourselves) up for failure.

As I continued my conversation with Mrs. Jones, she spent the next few minutes reiterating that she felt fine, that “nothing is wrong with me,” and that her primary wish was to “stop going to the hospital all the time.” With this simple shift in perspective, our visit became more effective, once it was focused on the patient’s goals. It also allowed me the opportunity to relate many of our medical recommendations to her goal of avoiding hospitalization: Improved control of your blood pressure and daily monitoring of your weight and sodium intake will help keep you out of the hospital.

I hope that one day built somewhere into our training, our scheduling, and our funding systems, there will be an emphasis placed on the equally important work of defining the patient’s goals of care, and that sometime in the not-so-distant future, this could even be listed as the chief complaint.

Michelle Nall is a primary care nurse practitioner who blogs at Primary Care Progress.

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  • penguin50

    Thank you very much for this post. It made me realize that there is an ongoing, low-level disconnect between me and my hospice care team. They are, quite understandably, focussed on minimizing my pain (and I share that goal to some extent), and yet my own TOP priority is to stay awake and alert as much as possible and I’m willing to tolerate significant pain to do that. So they are, I think, puzzled when they offer sedating pain medications and find me reluctant to take advantage of them very often. I think I just need to make this unacknowledged difference in priorities explicit, and then we can move on and quit working at cross purposes.

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