In my most recent posts, I’ve stressed that providers need to remain cognizant of the fact that conversations about shifting code status to DNaR, or transitioning to comfort focused care, are essentially asking patients/families to say it’s ok for them or their loved one to die.

And that can be too much for people.

So, when a decision has been made to stop further aggressive interventions and concentrate on comfort- keep in mind that it’s still really hard for the patient and their family.  And key to a smooth transition is to continually emphasize what will be done for the patient, and not spend too much time discussing what won’t.

Mrs K, 94 yrs old has been living in a nursing home for several years.  Her advanced dementia has left her bedbound, incontinent, and nonverbal, with limited ability to take food/drink.  She is now hospitalized yet again (the 3^rd time in the past 6months) for aspiration pneumonia.  This time, Mrs K is not recovering.  Her breathing is more and more labored, and she is now requiring oxygen by high flow nasal cannula or BiPAP (oxygen delivery methods that can only be administered in a hospital setting) along with aggressive respiratory therapy modalities.  In addition, she has chronic atrial fibrillation which intermittently causes a rapid heart rate and drop in her blood pressure.  And to provide nutritional support, she has a feeding tube, which she intermittently pulls out.

Mrs K was admitted to the step-down unit (not quite ICU care), and this morning had a particularly difficult episode of shortness of breath which took a combination of diagnostic studies, intravenous cardiac medications, placement on BiPAP, and a very small dose of iv morphine to get her stabilized and more comfortable.

Well-validated tools to help estimate her overall prognosis, calculates her risk of death within the next few months as >70%.

So, her providers were wondering how much longer to continue to put Mrs K through these aggressive treatments.

I had a long discussion with her son Mike.  Despite Mrs K’s long-standing dementia and recent hospitalizations, he had still not come to terms with his mother’s condition.  He was inconsolable at the mention that she could be nearing end of life.  Although her quality of life seems poor to her providers, Mike firmly believes that she sometimes recognizes his presence.  To him, that is quality enough to continue her on these active treatments.

We had a long discussion- specifically about his mother’s life before she was diagnosed with dementia.  He described Mrs K as very independent and active, attributes she treasured.  I explained how uncomfortable many of her current treatments were, and our fears that they were likely only prolonging her death, and not helping her recover. He reluctantly acknowledged that she did seem to be getting sicker, and that many times she seemed to be in pain.

After much discussion, he agreed that keeping his mother comfortable was most important. And he sadly agreed with shifting to comfort focused care.  I fully explained what this meant- she would be moved to a regular room in a quieter area where her family could visit day and night, no more continuous monitoring with their alarms going off to bother her, and all treatments would be ones to ensure her comfort and prevent pain/suffering. Treatments such as blood draws, extensive fever work-ups, would no longer occur because they were painful and were no longer beneficial.

Mike kept repeating that he feared she would get short of breath and feel like she was drowning when she was dying.  I assured him the nurses/staff would keep a close eye on her and administer medications to keep her comfortable, so she would not suffer.  When her time came, she would die peacefully.  I truly believed he heard me and he in fact said quite calmly “I know she doesn’t have long, she’s dying” several times near the end of our conversation.

I left him at her bedside to update her nurse on our conversation and went to the computer to start typing the orders and my note…

When the nurse started to get Mrs K ready for transfer she placed a purple bracelet (indicating her code status was now DNaR)  on her wrist.  And even though I had alerted him to the significance of this bracelet (i.e., that Mrs K would now be receiving treatments to ensure her comfort), Mike immediately asked about its meaning.  He was told it meant if Mrs K’s heart stopped, CPR would not be done.  Then, Mike started re-asking questions about her care on the new unit.  Again, her nurse framed her explanation more towards what was not going to be done, rather than what was going to be done. Mike was hearing emphasis on being transferred to a room on a floor without monitors and she would have less frequent vital signs checks and if her breathing got harder, BiPAP would not be restarted, etc…   She didn’t stress that the nurses could still keep a close eye on Mrs K even without the monitors, or assure him that the nurses would administer medications to help her breathing should it become labored.

Because to the nurse, this care was a ‘given’, after all Mrs K was on comfort care.  But these unsaid assurances were not understood by this grieving son.

Inadvertently Mike was left with a picture of his mother alone, struggling to breathe, and he literally freaked out.  He started crying, demanded to undo the comfort care decision and re-implemented full treatment including attempt at resuscitation if Mrs K had a cardiac arrest.  And nothing I said could help him change his mind.

For the next few days- our entire palliative care team continued to gently try to help Mike come to terms with his mother’s condition.  And despite taking a lot of time to just sit with he and Mrs K and provide support, he still could not make the decision to shift to comfort focused care.

So she continued with frequent blood work, respiratory treatments, being on and off BiPAP, etc.

Mrs K eventually died in the hospital after her body finally gave out over a week later.  Because of her advanced dementia, I can only hope she wasn’t that aware of what her body was going through.

But we’ll never know.

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