End-of life discussion, part two-B

I forgot to add, in my last post, a description of the last encounter I had with the husband, Ted, at the end of our visit that day.

We had done our examination of Eleanor’s wound, and the nurse was repacking the wound-vac dressing which was helping in the healing process.  I stepped out of the room to finish my documentation, and to get their paperwork printed for them, and Ted followed me out.

“Can I talk to you for a minute, privately?” he asked.

“Of course, let’s find a room!”  I answered cheerfully, although I was wondering with mild trepidation what he might be wanting to communicate to me.

We settled into an empty exam room, and he began:

“Doc, I just wanted to tell you a little bit about the first time I had a doctor come to me and start the same conversation that we had earlier, about end-of-life, and hospice.  It was in the Intensive Care Unit (ICU), and Eleanor was on a ventilator and was sedated, and in septic shock.  The doctor called me out into the hall outside her door, and told me that I needed to think about what she would want, or not want, and I should make her DNR (Do Not Resuscitate).  He told me that it was very unlikely that she would ever get out of the ICU, and that the treatments we were providing her with were only prolonging her suffering.

And, you know, the worst part of it for me was that I had overheard the doctors and nurses talking about another patient down the hall” — (here my internal thought was “Oops! That’s a terrible HIPAA violation!”) — “who was a lung transplant recipient, whose lung was failing, or something like that, and they sure were doing everything they could to save that guy!  Why weren’t they doing the same for my wife?  Isn’t she worth the same effort as that other guy?”

He had tears in his eyes, and during this statement of that painful time, he had to pause a few times to collect himself.

“And, look!  She made it out, and she’s doing fine.  So, when you started that conversation, I remembered that experience, and it brought it all back to me.”

My reply to him was something like this:

“That is terrible, and it really is the worst way for this conversation to ever be started with a family member.  The whole point of talking to you both about this issue now, when she IS doing fine, relatively speaking, is that you are in a better position to consider your options, and her preferences, in as clear and unemotional a frame of mind as possible.  It’s never easy to consider these issues, but outside an ICU room is the least ideal setting.  And, I apologize for the approach that you heard from the doctor who counseled you – it doesn’t sound like there was a conversation that was in any way respectful of you and Eleanor, and the values you hold dear.

I want to assure you again that I am not trying to convince you to give up treatment of her wound.  We are treating it, and we will continue treating her, as long as you and we agree that treatment is in her best interest.  If she wants to have more surgeries, if she wants to get hospitalized, if she wants to potentially spend more time in the ICU, we will respect those choices.  I just want you both to understand that there is a choice – you and she don’t have to pursue treatments that you don’t want, or that you or she find are causing her more discomfort, or are interfering with her ability to live the end of her life, however long that is (because, of course, we will all die eventually, and it’s just a matter of how long we have, which no one can predict).”

At this point, there was a knock on the door, and Eleanor joined us, in her wheelchair.

I wrapped it up with them asking them “Please, just consider what we talked about.  Think about what is important to you.  If fighting to the bitter end is what you want, just let us know.  If you would prefer to switch your care to a focus that centers more on comfort and maximizing your ability to engage in whatever life you have left to live, and not spend days, weeks, or months in a hospital bed, away from your friends, family, and your home, let us know that, and we will make that transition happen.  But, please understand, no one is trying to speed you towards Death.  The goal is comfort, and functionality.”

And, with that, I sent them home.

What did they decide?

Well, the home agency’s social worker and psychologist had a followup visit with them the following day, and I had spoken with them the afternoon after the visit with me, to let them know the conversation I had started.  They spent some time with Eleanor, and when I touched base with the home health agency, they told me that Eleanor had decided she wasn’t ready to transition to hospice.

And, that’s fine.  My only goal in this interaction, other than providing her with excellent medical care, is to make sure that she and her husband are aware of their options.  The worst situation for a patient, in my experience, is the feeling of powerlessness in the medical system.  As a doctor, I feel that a big part of my job is to share the power with patient.

After all, it’s not my life and health, it’s theirs.

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