As the news about the passing of former First Lady Barbara Bush comes to light, many on social media are commenting on the fact that she said “no” to continuing to try to fight a terminal illness and had chosen comfort care. Some say that her choice has “fueled the debate” over comfort care. This makes me shake my head in sadness.
How can the choice of comfort care be something that is part of a debate? I am appalled that in 2018, when we know so much about progressive disease and terminal prognosis that there is still some belief that there is a down side to electing palliative care. What we might want to ask is “Why was she not on comfort care longer?”
Maybe she made it clear to family that she wasn’t ready until those last few days. To that I have to ask “WHO IS READY?” None of us are ready to say goodbye to the life we know and leap into whatever is coming next. I’m pretty sure she wasn’t ready to leave Fmr. President George Bush or her children, grandchildren and great-grandchildren and extended family. I actually doubt that is the way it went down. Based on my experience in hospice and in working with patients with a progressive illness I have another theory. I am guessing that no one brought it up as an option until it was clear that she was actively dying. (If that is not the case, I apologize to her healthcare providers.)
So that is the problem. I know that her progressive illness had reached end stage several weeks if not months ago. Let me be clear…..NO ONE GETS COPD and CONGESTIVE HEART FAILURE in a few days or overnight. This had been progressive a long time. This was NOT a surprise to her doctors. She had probably been a Class IV NYHA Heart Failure patient for quite a while. In fact, I have seen many photos taken months ago of Mrs. Bush in a wheelchair because ambulation was too difficult for her heart and she could not tolerate the exertion.
Guess what….she was already at a point where no medical treatments could make her better or stop her decline.
Anything that was done for her after that point could have been done, at home, by a well trained hospice team with a palliative certified MD managing her medications. Did anyone say to her “There is nothing more we can do to treat you but there is this incredible service that will do a better job at keeping you stable, safe and comfortable at home. We think you are at a point where it is the best option for you It is called Hospice but don’t be afraid, comfort care is so much better than what we have to offer.”?
This would have eliminated trips to the Emergency Room and admissions to the hospital that could not reverse her condition or stop her decline. Hospice would have kept her in her home with her beloved spouse, in her own PJs, surrounded by her own personal things, eating foods she liked, sleeping when she wanted. No one gets those things in the hospital, not even a former first lady. She could have had frequent and rapid changes in medication with 24 response to her at home-been kept stable, safe and comfortable in the place she felt most like herself.
I am so sad to see this great lady pass, such a wonderful role model for spouses, women, mothers, daughters, grandmothers AND First Ladies. It makes me ache to think that her care team might have waited until she was already actively dying to get her into hospice.
Barbara Bush, I hope I can be a 10th of the lady you were.