Mrs T, 65 yrs old, has lived with multiple sclerosis (MS) for over 20 years ago. Her course has been one of intermittent exacerbations with intervening periods of stability. Over the past few years, she has become quite frail and requires caregiver support for day to day activities.
She was recently admitted to the hospital with sepsis secondary to pneumonia. Despite aggressive treatment, Mrs T developed worsening respiratory failure, and required intubation and transfer to the ICU. It was difficult to determine whether her decline was due to sepsis or an exacerbation of her MS. Whatever the cause, Mrs T was quite ill.
After about a week of treatment, she started to improve and was able to breath on her own. But she was now even more deconditioned. The ICU attending spent time talking with Mrs T prior to her transfer out of the ICU- and Mrs T was very clear that while she was happy to be alive, she did not ever want to be intubated again, she wanted her code status changed to DNaR, and wanted the medical chart to reflect these wishes.
The ICU attending changed Mrs T’s code status to DNaR, yet had some concerns. While Mrs T was critically ill, during multiple discussions with Mrs T’s medical surrogates (her brother and daughter)- they consistently expressed that Mrs T would ‘always’ want aggressive, life prolonging therapies. The attending wondered whether Mrs T’s medical surrogates were on the same page, so she requested a palliative medicine consultation to help take this conversation forward.
meeting with Mrs T
When I met with Mrs T, her sister-in-law Katie was at her side. Mrs T expressed hope that she would get stronger. And she explicitly stated that if her condition were to decline, she did not want to return to the ICU nor did she want to be intubated. Mrs T understood that without those emergent interventions, she would likely die, so she wanted assurance that she could be kept comfortable and be allowed to die peacefully. Katie was very supportive. They both discussed how difficult the past few years have been, and Mrs T was tired of being so tired. But Katie also mentioned that Mrs T’s family likely would not agree with this decision and Mrs T nodded in agreement. I inquired about potentially making a change to her advance directive- so as to name Katie as her medical surrogate. But Mrs T assured me that they are who she wanted, and Mrs T also mentioned that Katie would help them ‘see the truth’. I offered to facilitate a family discussion, but Mrs T wanted to discuss this with them on her own first.
With Katie’s encouragement, Mrs T told her family about her wishes; as expected they were not supportive. And they were quite angry that the topic had even been discussed. So, I arranged a meeting with Mrs T, her daughter, and brother.
We spoke at length about Mrs T’s overall condition. Mrs T was able to express that while she was happy to be alive, and willing to continue with rehab and further treatments, if she again got to the point where intubation was needed- she didn’t want to go through it again. Her life was getting too hard.
And here’s where the I’s started.
Mrs T’s daughter was very firm, stating quite bluntly that if they had not given consent for the recent intubation, “my mother would be dead”. And she went on to describe how good Mrs T is now, thus providing support for that decision. I attempted to remind them of Mrs T’s reality, that while she is alive and cognitively intact, she still has MS and is more physically frail and in need of extensive rehab- with unclear endpoint, but her daughter continued, stating that in the future- she felt that intubation would always be indicated, because “I think it’s worth trying so she can be alive. I know she’s tough, and would be able to improve. I think she’s just tired and doesn’t know what she’s saying.” And Mrs T’s brother essentially said the same thing: “I know this is hard for her, and I think she just needs to keep trying and everything will be ok”. This was all being said in front of a silent Mrs T.
When everyone took a breath, I pointed out there were a lot of I’s in their statements about what Mrs T should do. They were both taken aback by my comment. And while they seemed a little chastened, they continued to talk over Mrs T despite my attempt to help her get her voice heard. Mrs T expressed her love and appreciation for her family, and acknowledged their love for her, but they were not dissuaded from their convictions about knowing what was right for Mrs T. And Mrs T gave into their wishes and changed her mind about future treatments- at least for now.
The problem with too much I applies to providers as well
Mr W, 72 yrs old, with diabetes, hypertension and coronary artery disease – underwent a high risk coronary artery bypass graft operation. He required prolonged ventilatory support due to multiple post-operative complications- the most serious being a stroke. Per the neurologist, it was very likely that Mr W would be left with a permanent and profound right sided weakness if he regained consciousness. Around post-operative day 8, Mr W started becoming more mentally responsive, and on day 12- just as consideration about placing a tracheostomy tube was being discussed with his family, he actually extubated himself with his good left hand. Despite medication to relieve the discomfort of the endotracheal tube, Mr W just couldn’t stand being on the ventilator any longer. Luckily with aggressive respiratory therapy support, he was able to avoid need for reintubation.
After 2 ½ weeks of continued medical treatment and physical/occupational therapy, Mr W made some improvement, but as someone who had always prided himself on his strength and independence, this new reality was difficult.
meeting with Mr W
I went to see him, and spoke at length with he and his wife. Both were quite sad about his limitations and were struggling to cope. While he was still open to transfer to a rehabilitation facility in hopes of improving, Mr W was quite adamant that if he another medical issue came up that would likely further increase his debility- he would not want to be alive. Mr W very much wanted to ensure that if he had a cardiac or respiratory arrest or another stroke- that he would be allowed to die peacefully and no attempt at resuscitation would be done. He wanted his code status changed to DNaR.
I contacted his operating surgeon- who was annoyed with this news and particularly annoyed that anyone had even discussed theses issues with his patient. The basic response was: “What does the patient know? Of course he doesn’t want to be dependent, but I have seen many patients who say that at first, and then do fine in a dependent state. Until they see what it’s like, I don’t think patients can make that decision. As long as he may be able to improve I am sure he will be happy to still be alive….”. And he ended our conversation with “I’ll talk to him about this further, do not change his code status.”
Again, the I.
The whole point of advance care planning is to ensure the patient’s voice is heard when they may be too sick to speak for themselves. But the reality is that family and providers who may differ with a patient can have a huge sway over ultimate patient care decisions despite the presence of advance directives. While most of them are (hopefully) well-intentioned, sadly the patient can get lost.
The I gets in the way.
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