to continue the theme from an earlier post…
Our current healthcare delivery system is made up of many silos. And while they are all tasked with helping patients/families, it sometimes feels as if they are working at cross purposes. Not surprisingly, a consequence of this is the inadvertent sending of mixed messages.
Not a trivial matter.
a Patient
Mr W, 75 yrs old, has multiple co-morbidities: advanced congestive heart failure (EF ~25%- very bad), coronary artery disease, poor kidney function and diabetes. On top of all of this, he has dementia. While he still recognizes his family, he is typically confused and requires assistance with all basic activities of daily living. Mr W lives alone with his wife in their home. Every day one of their 7 very caring adult children (who all have medical issues and life issues of their own) comes over to provide caregiving support. At night, Mr W and his wife are on their own.
Now Mr W is in the hospital with diarrhea, severe abdominal pain and dehydration. It’s his 4th hospitalization in the past 7 months. After a thorough work-up including multiple blood tests, x-rays, CT scans, even colonoscopy, only a bladder infection was identified. Worryingly, it was caused by a very resistant bacteria, so he is on the last line of effective intravenous antibiotics against this organism. The hospitalists are getting frustrated, both by his repeat hospitalizations and his family’s insistence on aggressive interventions and ‘full code’ status. From his providers’ perspectives, hospitalization is very hard on Mr W, and they believe it would be more appropriate to shift towards comfort oriented care and home hospice support. I’ve been consulted with the classic: “They don’t get it” palliative medicine consult.
family Meeting
I met with 12 members of Mr W’s large family. Their devotion to him was obvious. But despite the family’s efforts, Mr W keeps getting hospitalized for: recurrent infections, confusion, and just a month ago, a heart attack. From their perspective he always seems to ‘recover’ from each hospitalization so they are thankful.
During our discussion, it became obvious that they had little understanding of the extent of his dementia and how that impacts his overall health. When I specifically asked about his cognitive impairment- the initial response was that he was doing ‘fine’. But with further probing, they all started to see that in fact Mr W has been declining more rapidly over the past few months. In fact, just within the last couple of weeks he has become incontinent and now wears a diaper- which for someone with dementia, points to nearing end stage disease.
Apparently, none of his medical providers (both the physicians as well as the case managers, nurse navigators, nursing staff) have framed the hospitalizations in terms of his advancing dementia. Which is critical. Because dementia is a terminal condition in and of itself (patient’s life expectancy after diagnosis is ~7yrs) and has no curative treatments. So while there are temporary fixes for his infections, etc…, there are none to slow down dementia.
So when I started to explain how each of his multiple co-morbidities and hospitalizations are reflection of his overall frailty due to his dementia, and that his downward trend will continue, they looked at me quizzically.
“are you telling us he’s not going to get better?” some asked indignantly.
“are you telling us he’s dying?” others asked tearfully.
And apropos to my concern about silos is the next question posed to me: “Why are you talking about him getting sicker when the case managers keep telling us to look at rehab centers so he can get stronger before he comes back home. If the chances of him getting better are so poor, why consider rehab????”
Well, that is a very good question…..
A long discussion followed to help them see just how sick their beloved father was. And they started to understand that the time he had left was limited. With that reality, we could then discuss the plan forward. While they wished they could keep Mr W at home, they really couldn’t provide the 24hr/day care he now needs. So they agreed to continue the current tx for his infection while the case managers would arrange hospice care in a nursing facility, something quite different than a nursing facility with rehab. His family agreed that if his condition were to decline- comfort should be ensured without escalation of care; and if cardiac/resp arrest- he should be allowed to die peacefully. With many tears, and agreement from all of his family, his code status was changed to DNaR.
Unexpectedly, Mr T actually took a sudden turn for the worse the next day- and he died just a few days after our meeting.
on Reflection
The hospitalists were in fact correct- the family didn’t “get it”- but it’s because all the various silos were working at crossroads and not giving a consistent message.
While the case managers and discharge planners correctly recognized that Mr W needed more caregiving help than his family could provide him at home, they were muddying the waters by talking about rehab facilities. They inadvertently activated HOPE, the perfect way to avoid facing painful realities. My discussion with his family allowed them to finally see that Mr W was nearing the end of his life. Without that understanding and their decision to change his code status, Mr W would have likely died after being put through CPR, and if resuscitation was ‘successful’, he would have likely died on life support in the ICU.
Which would have been a tragedy on many levels.
This is the kind of discussion that can lead to the excellent outcome described. At least this family listened, which is often not the case. People in serious denial do not listen to advice to let go. An great example of how communication can improve the situations of so many terminally ill people.