I recently opened a hospice case for a person with end-stage heart failure who said, “I don’t like my cardiologist.”  This person felt abandoned and left without hope.  Serious illness conversations may be difficult not only for the patient, but also for the provider.  This cardiologist didn’t avoid the conversation, but could he have more effectively communicated this bad news and the potential benefits of hospice care? 

I was sensitized to this subject by 3 articles this year focused on improving serious illness conversations.  The first was an article in JAMA in May by the late Dr. Randall Curtis’ team in Seattle studying the value of using a communication-priming intervention that promotes goals-of-care conversations between clinicians and hospitalized older patients with serious illness.  The “Jumpstart Guide” tool focused on potential customized questions for clinicians that support robust discussions with their patients regarding “what matters most” to that person in the context of their acute illness.  This intervention had a larger effect size among patients with minoritized race or ethnicity, which was an unexpected but very welcome outcome.  This open-source article is available at:  https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2790602.  

For more information on smoothing discussions about prognosis and treatment, visit the VitalTalk website that this team developed at:  Address Goals of Care - VitalTalk.  The vital talk free app (Vital Talk education) provides real time assistance for responding to patient emotions, delivering serious news, prognosis, care planning issues, and much more.  

The second article on “Reconsidering the Language of Serious Illness” challenged the commonly used language that if this happens, “we will need to do this.”  For example, “if her breathing gets worse, she will need to be intubated.”  This language assumes that the “needed” action is the best option and puts pressure on patients and family members to choose particular interventions over others.  Instead, it’s better to frame conversations about potential future adverse events as a time to create space for deliberations about a patient’s priorities and then customize choice(s) to be in line with those values and priorities.  This JAMA opinion piece is available free at:  https://www.palcare.pitt.edu/jama-article-by-dr-robert-arnold-shared-widely/

The third  article was an opinion piece written by the mother of a 19-year-old son who suffered fatal injuries.  Though she was a longstanding hospice agency counselor, she was struck by the assumptions clinicians made using words to describe the clinical situation that could be misunderstood by patients and families, even though that wasn’t the intention of the clinician.  To the public, words like “sick” imply that someone is going to get well, whereas the clinicians may mean something irreversible may have occurred.  Is the report of “stable vital signs” a good sign that the patient is getting better or simply one measure in the context of a serious brain injury?   When the family is told a loved one is “getting better”, they may assume their loved one is on the road to full recovery, when in fact that may be highly unlikely.  To manage family expectations, it may be better to say, “the most likely scenario.”  

The term “waking up” similarly may be misinterpreted as a return to normal, whereas waking up may reveal the consequences of a serious irreversible brain injury.  This woman regrets the final advice she was given to go home while at the airport when she asked, “What do we do next?” She was told to go home and wait, but in retrospect wished they had advised her to come be with her fatally injured son during his last moments of life.  This powerful opinion piece can be found at: Your Son Is a Very Sick Boy: What One Says Matters | Humanities | JAMA | JAMA Network

I concur with this woman that “What one says matters”.  We now have resources readily available to help us improve our serious illness conversations.  This is not an easy journey, but a vitally important piece of the work we are called to do, and definitely a path worth traveling for those we care for and their families.