Admitting a patient to the ICU and managing them in the days that follow? No problem. But along with patients (often intubated, sedated, delirious, or otherwise unable to advocate for themselves) come their family and friends.
Managing them is an art in itself. Here are some basic rules to help steer you away from the most treacherous pitfalls.
Do choose your words with great caution
This is just another shift for you; for them, it may be the worst day of their life. The smallest error in word choice or inflection, the slightest unintended implication, may be something they will remember forever. I am a notoriously casual person, but even I slow down and gather myself before addressing family members, making sure I am rendering exactly the right impression about the patient’s condition, and exactly the right impression about our care.
Do explain early and often the overall trajectory of critical illness.
When a loved one is admitted to the ICU, it’s often the first encounter they have with illness of this severity, and they lack an internal model to establish basic expectations for the days or weeks to come. Emphasize that people “get sick quickly, but get better slowly,” and that complications and setbacks are expected along the way. This sets the stage for the admission and reduces the risk of misunderstandings.
Don’t minimize the disease
When describing the patient’s status or prognosis, always err on the side of acuity. Families are looking for every opportunity for optimism, and anything you tell them will be “upgraded” several notches by rose-colored glasses. Moreover, even though you may not be impressed by the severity of disease, it is certainly impressive to them. You want to under-promise and over-deliver: if things go better than you predicted, great; if they go worse, they will never forgive you. (Of course, if you are unreasonably dark, they’ll think you’re enjoying their misfortune.) Adopt a gently pessimistic realism. When asked how a patient is doing, don’t mention the daily perturbations, especially the small improvements that can wax and wane; if they remain critically ill in the larger sense, emphasize that instead.
Do identify a point of contact early
Family dynamics can be complex, and some patients may come with seemingly hundreds of siblings, half-cousins, and vague friends of the family, all with decades of love and hate entanglements that you don’t want to have to navigate. At the time of admission, determine a single person to whom your future communications will be directed. They can then disseminate that information to whomever they like; if “Cousin Joey” calls the unit looking for updates, you can simply direct them to the contact person. Usually, this person should also be the legal decision-maker, but occasionally the decision-maker (e.g. an elderly spouse) will ask you to communicate mostly with another person, such as a younger sibling. That’s fine too.
Do talk to family early and often
Depending on how busy you tend to be, and how available family makes themselves (i.e. visiting daily versus requiring several phone calls to track down), this may be difficult. However, there is no question that families are more responsive and understanding when they are kept regularly in the loop with frequent, timely updates. What doesn’t work is ignoring them for two weeks, then gathering them into a room to tell them their loved one is going to die and you’d like to transition to comfort care.
Don’t forget the part of the patient that lives outside the ICU
While we tend to reduce people into a disjointed collection of systems and diagnoses once they hit our doors, how we manage their problems may radically differ depending on the person they were (and hope to become again) and the life they lived before (and to which they hopefully can return). This doesn’t mean a cursory inquiry about code status on admission. It means actually delving into their quality of life and where they fall upon the curve of their chronic diseases. It means considering their living situation, employment status, socioeconomic milieu, and family support. You will poo-poo this as “somebody else’s job,” such as that of internal medicine or palliative care, until a better provider comes along and catches the TB diagnosis in a patient you didn’t realize was homeless, or has a patient admitted to hospice rather than to the ICU.
Do coordinate, integrate, and explain the patient’s care
Whether your unit is “open” or “closed,” the business of coordination of care for ICU patients typically falls to the critical care team. Just like a primary care provider outside the hospital, you are the one who sees the whole picture, and who remains at the bedside when all the consultants have left. There may be a dozen services following the patient, popping in to make confusing remarks or recommendations and then disappearing. Families need you to explain what it all means and put it into context. Few of these other teams are going to be interested in making this final connecting step; they tend to see their job as laying out “options” like a buffet meal. Your job is to bring them to the patient, explain them, help them to understand, and then help them reach good decisions when they need to be made.