I started a post about “End of Life Discussions”, and it’s taken me awhile to get back to it.  Life got busy.  But the thoughts have persisted…

So, I was sitting in a clinic exam room with my patient, we’ll call her Eleanor, and her husband, we’ll call him Ted.  And I launched into my pitch:

“Eleanor, you were in the hospital for several weeks over the holidays, and every time I came to see you, you expressed the strong dissatisfaction you felt with being in the hospital.  You kept telling me that you wanted to be home.  You know what it’s like to be in the Intensive Care Unit – it’s dehumanizing, and, to some extent, degrading, and I don’t know that you want to be there again.

If we pursue all options to treat your very severe ulcer, it may come to a choice to enter the hospital again, which you have already expressed a distinct distaste for.

But, you do have a choice.  You can decide that your values are to stay home, and enjoy your family, but that, by staying home, your ulcer may advance, and not heal, and, ultimately, that might lead to your death.  I am not trying to convince you one way or the other, I’m simply saying that you have a choice in the matter.”

I looked at her.  I saw her nodding at me in agreement.

I looked at her husband.  He had a quizzical look on his face.

I turned back to her.

“What do you think?”  I asked her.

She replied, “What would you choose to do, in my situation?”

Let me break in here – I have had this conversation with countless patients, and this question often comes up.  And, yes, I often have a strong opinion.  But, would I ever tell them what I would do? Of course not!  Because, it’s not my values that are at stake here, but theirs.  And, I told her just that.

She couldn’t state a preference.  And, that was OK.

I turned to Ted.

He was smiling.  I asked him why.  And he told me.

“We had this same conversation before.  It was outside the door of the Intensive Care Unit bed that Eleanor was in months ago.”  He turned to her and said, “You wouldn’t remember this, you were out.”

“One of those young doctors came up to me and said ‘There’s no hope for your wife, and the best thing you can do for her is to let her go.’

And, you know what I heard him say?  What he was saying was directly out of the Book of Revelations, it says it right there, that mankind will take over the power of God, and this is Satan’s work” (I’m paraphrasing, as I’m not that familiar with the Book of Revelations, but the gist of what he seemed to be accusing me, the doctor, of was being an agent of Satan).

And, I have to say, I was so relieved to know where he was coming from.

The whole point of medical ethics, and of end-of-life-discussions, is to understand where the patient is coming from, and what values that patient holds dear.

In this particular setting, I wasn’t 100% sure that I was seeing the values of the patient, as opposed to those of her husband, who clearly is a dominant player in their relationship.  But, as I spoke with her more, later that same day, in his absence, she clearly values his advocacy on her behalf, and I respect that.  I appreciate that my husband may, in many instances, speak more clearly, and less half-heartedly, than I might do.   There’s value in that.

I ended up the conversation recommending to them both that they might want to read a book that had a huge influence on my perspective on the end of life: Ira Byock’s Dying Well.

So, at then end of the conversation, we didn’t have an agreement that she would enter Hospice care.

We agreed that she, and her husband, would think about it.

That’s all I ever want from a conversation like this, painful as it is.  I don’t understand why we approach child-bearing, and every other life event, with so much consideration, but death?  We run from that idea like the Plague, and we end up suffering a death that we would wish on no one.

If you want to fight for every last breath, great!  More power to you.  That approach is described in Ira Byock’s book.

And, if you prefer to proceed towards the inevitability of Death with dignity, with as much comfort and support as possible, and with as much joy as can be enjoyed…then, that should be the focus.

And, the medical community should be able to support that.  But, we’re very bad at doing so.

Addendum: this long day with this lovely couple continued…