Pearl 5: How Can Perspective Awareness Explain the Patient “In Denial”?

“The family’s in denial.  Can you meet with them and help clarify goals?” asked the medical ICU team.

Often times the palliative care team is consulted to speak with a patient or family “in denial,” and upon listening to the patient or family, the palliative care team may find that denial is not the actual issue.  Rather, it is misunderstanding, misconception, and/or miscommunication that is driving the disconnect between healthcare providers and the patient and family.

One type of misunderstanding ensues when multiple specialists, each specifically focused within their scope, speak with family, resulting in numerous and sometimes conflicting perspectives on how their loved one is doing.

In the hospital, for example, a nephrologist may tell an adult son, “Your father’s labs are okay, and he’s making urine.  He won’t need dialysis today.  Hopefully, his kidneys will recover.”  The son then views his father’s case as an optimistic situation and thinks, “Great!  Dad’s doing a lot better.  He’s a fighter, and he’ll walk out of here.”

Later that morning, an oncologist may tell the adult daughter, “In the ICU, he has several critical issues, and cancer is not the acute issue.  After he recovers from this, he can follow up with us in clinic and we can talk then about more chemotherapy.”  The daughter may interpret this to mean, “Dad’s critically ill now, but we expect him to return home and eventually be strong enough to go back to the oncologist and get more chemotherapy.”

A couple hours later, a pulmonologist may tell the granddaughter at bedside, “We haven’t made any progress with his ventilator settings.  I’m worried his COPD is so advanced that he may need ventilator assistance long term.  And his not waking up to protect his airway is troublesome too.  Do you know if he ever completed an advance directive?”  The granddaughter may extrapolate this to a worrisome prognosis and fret, “Oh no, Grandpa’s NOT doing great.  He would hate this, where he’s dependent on machines and didn't know what was going on.”

When the primary medical ICU team speaks with the family, they might hear words that indicate a significant disconnect between family’s understanding of the big picture and their own professional understanding of the big picture. 

The primary team might hear from the son, “We think our father’s going to recover.  The nephrologist said his numbers look good…we just have to give him a chance.” 

They might hear from the daughter, “We know he’s sick.  We’re being realistic.  At the same time, he’s our Dad.  We can’t just give up.  We need to get him through this, so we can go back to fighting his cancer.” 

They might hear from the granddaughter, “My grandpa is a loud, big, vibrant person.  This isn’t him.  I don’t know what to do, but this isn’t him.”

We in the medical field may try our best to keep patients and family members informed.  However, due to clinical time constraints, our reliance on “professional expertise” language which is often medical jargon gobbledygook to even the most educated non-medical layperson, and lack of “big picture” communication training, we as clinicians rarely put the medical details together in a way that patients and family members understand the significance of the overall situation.

When a palliative care consultant becomes involved, they would meet with all “stakeholders” in the patient’s life and actively listen to (without correcting) every person’s current impressions on how they believed a loved one was doing.  If the patient had mental capacity, this would include the patient’s own impressions.

Then, a big picture description would be attempted to correct misconceptions and fill in gaps.

“It sounds like your dad – your grandpa – is a very active, social, vibrant person.  Sounds like he has a strong personality, which is in line with your saying he would fight to return to an active, social life.  It sounds like the ICU doctors and specialists such as the kidney doctors, lung doctors, and cancer doctors have all been working as hard as possible to give him this fighting chance. 

We are here today because they’re worried about how your dad – your grandpa – is going to do as we continue down this path.  The lung specialists say that despite their medications and procedures, it hasn’t made much of a difference in how dependent your dad’s lungs are on the breathing machine.  Because of his severe stage COPD, it is likely his lungs will remain dependent on the breathing machine for a long time.  During this time, his cancer would likely continue to grow, and he would likely become weaker and weaker rather than stronger.”

This “likely health trajectory” / big picture depiction would then be followed by an explanation of potential treatment paths, relayed with multiple pauses and with every day language so that everyone in the room has time and ability to fully comprehend potential treatment directions.

“Some family members say, ‘We need to give him more time.  We would regret not giving him more time,’ in which case, more time would mean creating a hole in their loved one’s neck called a 'trach' and connecting the breathing machine long term to a breathing tube through this trach. He would likely be moved to a 'rehab hospital' called an 'LTAC,' where breathing specialists would continue to try to wean him off the ventilator. He would be at high risk of developing complications, such as severe infections or bedsores, from being bedbound, dependent on machines, and with cancer that's not able to be treated. He'd be at high risk of coming back and forth to and from the hospital.

Other family members say, ‘He would never want to live dependent on machines, getting weaker and weaker, especially if he has two non-fixable things – severe COPD and stage 4 cancer.  He would say then that this is the time to say good-bye.’ The doctors would switch to a different treatment path, the path towards focusing on comfort while their loved one is dying.  This would mean removing the breathing tube and freeing him from the breathing machine while giving opioids and other medications to keep him comfortable and not short of breath.

What are your thoughts about these two paths?”

In conclusion, if a patient or family appears to be “in denial,” consider the following steps:

1.       Clarify if this “denial” is actually a significant knowledge gap in understanding the reality of the medical situation.  Actively listen to the patient or family members’ understanding of what they believe is happening, especially if multiple specialists with multiple perspectives are involved.

2.       Help everyone step back and look at the big picture, using every day language. 

3.       Enable everyone to visualize realistic treatment path options, including the comfort focus treatment path as a potential option.

4.       Without judgement, directly ask the patient and family on their thoughts.