4-10-2022 Linda wants to refuse further treatment

(Tricia)

I did not go to the hospital today, hoping to take a rest day. I also was able to attend a planned lunch with friends. Marilyn visited Linda this morning, and Ed visited this evening--both of their visits were very difficult. Linda stated firmly, to each of them, that she did not want further treatment. She is only taking her medications when we beg her, and she is refusing to wear her oxygen mask (without it, her oxygen levels drop dangerously low).

This is truly devastating. If we thought these were truly Linda's wishes, it would be tragic, but we would understand. It would be an easier decision. However, she has made it clear that she doesn't believe us. She does not believe us when we tell her that stopping treatment will end her life. She has told me that she believes we are the ones making her sick, and if we would just stop, she will be healthy again.

This also would be an easier decision if the treatments she is refusing were invasive or complex. We always knew that such treatments would not be what she would want if she were thinking clearly. But other than the long-term course of intravenous antibiotics, which is scheduled to end next Saturday, the treatments she is refusing are oxygen, which would give her lungs time to strengthen from her last surgery, and oral medications that she has been taking for the last ten to 20 years. The fact that she might not survive for lack of such simple interventions is heart-breaking.

But I also can see that she is tired of dealing with all the nurses, doctors, medications, and machines. She is tired of not being able to eat and drink when she wants to, and of having other people tell her what to do. So, when I look at it from that perspective, those "simple interventions" are symbolic of a much larger struggle from which Linda is desperately trying to free herself. 

Many times over the past few months, she has said things like, "I never thought I could be in a place where I would demand to leave and no one would let me," and "How can I get myself out of this? I don't know how to get out of this." We would answer by reminding her of the healthcare workers trying to aid in her recovery, and the plan for therapy that would help her regain her mobility over time. But unfortunately, those are the very things she is trying to escape, regardless of outcome.

Tonight, with all that's going on, I almost went to the hospital, even though I had planned not to. But, frankly, I'm exhausted. Even with Linda stating something so final, I simply did not have the energy to go. Ed put me on speaker phone, and I was able to convince Linda to wear her oxygen mask--and I hope take her medications--at least until tomorrow morning. Tomorrow, I'll be there early to talk with her, and then discuss with the doctor how we move Linda into palliative or hospice care--where that should be, what is involved, what we will need, etc.

Who knows, maybe making that move will be good for Linda's overall perception of her own agency and independence. Maybe she will be willing to do more, if she believes it's on her own terms. That's an incredibly scary gamble to take, but depending on her outlook tomorrow, we might not have any choice.