more teachings from Mrs G and her family.
In my previous post you met Mrs G.
Her hospital course was marked by periods of instability, followed by a few days of relative calm, and on occasion, a few days of actual improvement. Then, another setback. Taken as a whole, her trajectory was one of overall decline. But until the last week of her life, there was never a sustained period of decline without at a day or two of (at least from family standpoint) relative stability.
And this had a significant impact on how her family was able to process and accept her overall prognosis.
Because she was quite ill and frail throughout much of her final hospitalization, her oldest son and family were the decision-makers. And because of her prolonged stay, they came in contact with many medical providers both as part of everyday interactions, and in formal, scheduled meetings with her physicians. While I was not involved with most of them, I participated in multiple discussions, late in her stay- following the operations needed to treat her sternal wound infection. Initially, I accompanied the intensivist or hospitalist taking care of her; later I met with them on my own. Each meeting was long and unrushed; and well over an hour in length.
While family meetings were often arranged because of a new complication, I also met with them during times of relative calm. No matter the impetus for the meeting, I made a point to ensure that our concerns regarding her overall trajectory were included in the conversation. Mrs G’s family needed to hear and understand that overall, she was just not improving. It was important for them to consider that the ongoing medical treatments were likely not prolonging her life towards an eventual recovery, but might actually only be prolonging her death. And we worried that perhaps these continued treatments were causing suffering. Daily blood draws, frequent tests, dressing changes, tubes in her nose and throat, ventilator support, respiratory and physical therapy treatments, being away from your family, etc, etc.., are incredibly hard.
We repeatedly explained why we had doubts about her ability to recover, to prepare them for the terrible outcome- her eventual death- we expected and they feared. And while I thought the family was truly hearing us: they shed tears (which typically means the bad news is getting through), they discussed how “she’s had a good life”, and about “not wanting to prolong death”, I suspected that they might not have been truly internalizing this information. Because at the end of each discussion, they were never able to agree to change her code status to DNaR. Despite being told that if she were to have a cardiac arrest- there was no chance that she would ever be well enough to leave the hospital, they still wanted CPR attempted. In my experience, when families really understand, at a minimum, the patient’s code status gets adjusted.
And in fact, they really never ‘got it’. Despite our attempts to be clear and to address their questions, each conversation seemed to repeat itself; again and again her family could not understand why she wasn’t improving,
the power of the positive.
When talking with her family a few weeks after Mrs G’s death, what struck me is how Mrs G’s family kept repeating that the nurses would tell them she was doing ‘fine’, or that the specialist said she was ‘stable’. It became obvious to me, that they had interpreted these comments in an overly positive way, so that any isolated period of stability became like a ray of sunshine that completely overshadowed the negative overall picture we had been describing.
Because of the power of the positive, providers must use care with words.
Patients, particularly ones who have an ICU stay like Mrs G, come in contact with many providers during their hospitalization: physicians, nurses, respiratory therapists, occupational/physical therapists, etc…. and we can unknowingly be careless with words. Seemingly bland words(to us) like ‘stable’ or ‘fine’ can have overly hopeful meaning to patients and families desperate for good news.
For example: Providers may describe an ICU patient who is intubated, on pressors for blood pressure support, and multiple antibiotics as “stable”- because between yesterday and today, nothing else has gone wrong. We understand that this “stable patient” remains very, very sick; so while ‘stable’ is better than ‘getting worse’, it’s no reason to celebrate. But when providers say this same word to a patient/family- “stable” can be interpreted in a much more positive light, giving this bland word much more power than it deserves. And sadly, Mrs G’s family did this regularly.
we must all be very careful with our words.
Although saying words like ‘doing fine’, or ‘stable’ may be said out of a sense of compassion for families/patients, it is critical that our words be precise and clear and reflect the ongoing situation.
- If the patient is improving, but we are still worried about his ultimate outcome, describe the patient as “still very sick- but showing some improvement. And we are still unsure if this is a true good sign or not.”
- If the patient is still critically ill, but not worse than yesterday: need to say it just like that.
The short-hand ‘stable’ is not an accurate depiction of the situation and is way too hopeful for the reality at hand.
What was happening with Mrs G’s family demonstrates the power of the positive to overshadow everything else- no matter how direct you think you are being at giving bad news. Basically every time they heard ‘fine’ or ‘stable’ to describe Mrs G (which was a lot)- the negative crepe we thought we were clearly laying down, was completely swept away by anything that could have been interpreted in a positive light.
And to a family desperate for their loved one to improve, this lack of clarity can cause more pain, by inadvertently encouraging unrealistic hope. As illustrated by Mrs G’s family, the effects can be damaging and long-lasting.
Subscribe to my blog feed