The family is unrealistic: now what?

In hospitals everywhere, staff members experience moral distress when they observe medical interventions that contribute to their patient's suffering without a clear, counterbalancing benefit.  Many authors have explored the problem of differentiating between prolonging life and merely prolonging the dying process.  The care team approaches the decision-maker - the son, the daughter, the spouse - with recommendations that unhelpful interventions be stopped, or at least not started. Mechanical ventilation, dialysis, CPR, vasopressors.  Too often, these discussions are understood to have failed.  The reason?  "The family is unrealistic."

I think we make a mistake when we treat this observation as a bona fide conclusion, rather than as an invitation to explore the situation more deeply.  Here is a short list of issues that may contribute to a stalemate, frustration and distress.  Consider this a differential diagnosis, or maybe a checklist for managing "unrealistic" families:

1.  We're better at sharing information than we are at communicating.  "We told the family the dad is experiencing septic shock with a rising creatinine and that his respiratory status is getting worse, but they're not being realistic.  We did let them know that with his labile blood pressures, he's not even a candidate for dialysis."  It is easier to run the problem list than it is to say that dad is dying. More on this below. 

2.  We say we're interested in understanding the patient's "goals of care" but we don't always mean it.   We use the term "goals of care discussion" so often these days but I'm afraid that many of us have lost track of what the concept entails.  The point, of course, is to understand what matters to the patient (often expressed by the patient's decision-making agent).  Is it better to be on a ventilator than dead? Or on dialysis, or in the hospital?  Put another way, is the goal of dialysis or a ventilator to allow for recovery, and a return to some previous level of function?  Or to extend life for a month, or a week?

If there were one-size-fits-all answers to such questions, goals-of-care conversations would be pointless.  It seems to be easier to conclude that we're doing the right thing when patients and families make the decisions that we would make for ourselves.

3. Our frame of reference is completely different.  Doctors and nurses caring for patients with advanced illness expect that these patients will die, too often after useless invasive treatments.  The mortal condition of these individuals is an inescapable reality.  The family, however, has faced crisis after crisis for dad.  Hospital admissions, stays in the ICU, rehab and, inevitably another admission.  They have probably faced grave prognostications before, and probably more than once.  In contrast to the staff's assumption that mortality is 100%, the family's empirical experience is of 100% survival, so far.  The "unrealistic" family members are being good scientists.

4.  We sometimes treat families as our adversaries and not as our partners in care.  Once we decide that our agendas are not aligned, a vicious cycle ensues.  We see it as our mission to help the family see how "hopeless" the situation is.  (Of course, if it is our purpose to limit life-extending treatment, the logical inconsistency here becomes quite obvious.  If death is that imminent, the family asks, why the need to make hard decisions?)  The resulting dialogue represents the antithesis of empathic communication with a son, daughter or spouse facing the loss of a loved one.

Fortunately, there are correctives for each of these problems that may help us provide better care for the dying.

First, we need to use proven strategies to ensure that we are communicating effectively.  Typically, we think we're doing so when we sit down with the son or daughter and methodically list the issues - the blood stream infection, the breathing problems, the cardiac function, how the kidneys aren't working, the test results, what we're doing and what we propose to do.  We (and I am starting with myself) can feel very self-satisfied by our lucid explanations.  But are we effective?  A body of evidence tells us that we need constant check backs to ensure that we and our patient are on the same page.

In the Northwell Relationship-centered Communication program, that process is called an ART loop, for Ask-Respond-Tell.  "We found a Staph blood stream infection in dad with this morning's lab results.  What do you know about Staph infections?"  Also called a "knowledge biopsy," such questions engage the listener, identify his level of understanding as well as misconceptions, and set the stage for more information sharing.  "That's right.  They are serious.  Even without other health problems, many individuals go on to die after this kind of infection has been found."   

Second,  we need to check our biases at the door.  Is there anyone who can help us?  Yes.  Probably the most important role of the Ethics consultation service is to help the clinical team find a path toward doing "the right thing."  Rather than answers, Ethics consultation, when effective, helps clinicians ask better questions.  These are questions not about what can be done (praxis), but what should be done (ethos).  Ethical considerations of beneficence (acting in the patient's best interest), nonmaleficence (avoiding harm) and respect for the patient's autonomy inform such deliberations.

Third, we need to recognize that end-of-life decision making is a process.  The gap in perspective between patients and health professionals may seem unbridgeable.  Sometimes, just recognizing this out loud is helpful.  We should also keep in mind that in the span of just four decades we have done a complete about face as regards our attitude toward life extending treatment.  When the Karen Ann Quinlan case was litigated in 1976, it was the view of the hospital that withholding or withdrawing life extending treatment was ethically indefensible, and, as important, that families had no role in making decisions of this kind.  Now we empower families, but when there are disagreements, most often it is the patient's healthcare agent who is arguing for aggressive treatment, while doctors and nurses urge a shift toward comfort care.

Finally, we need to build partnerships with our families.  An us-versus-them attitude can be understandable, but it is rarely helpful.  A specific strategy for communicating in a way that is compassionate and therapeutic was highlighted recently by Joshua Lakin, a Palliative Medicine specialist at Dana Farber.  In his Perspectives piece (JAMA Internal Medicine, Dec 2018), he notes:

  All too often, the patient and the medical team land in a tug of war. On the one side stands the patient and their family, fighting to live. On the other side stands the medical team, trying to convince the patient that he or she is inevitably getting sicker. In a tug of war, neither side can imagine easing its effort. The patient fights to stay positive. The medical team, similarly stuck, pulls the patient to simply accept the prognosis.   

How do we avoid this impasse?  Lakin suggests pairing our hopes and worries.  "I hope that dad is able to get better, as he has in the past.  But I am worried that this time he won't make it out of the ICU, and that he may only have a few weeks to live."  Using "I" statements in this way gets us out of the trap of having to be certain about the future, which we never are.  The prognosis is not a statement of fact - it is just our medical opinion.  Additionally, this approach helps reinforce our empathic relationship with the patient and family.  We want the same things, the same goals. 

Communicating medical facts in ways that families can digest, understanding their goals of care, and finding ways to sustain relationship and to collaborate with families -- all of this is good for families.  Critically, these tools help us provide the best possible care for the dying, but also best care for ourselves.