One of the practices of Hospice...
...at least one of the practices of our Hospice RN, is that when a patient chooses a behavior, such as refusing meds, or water, or food, that may or will lead to irreversible weakening and probably to death, if the patient is lucid enough to understand, the consequences are reviewed and the patient is asked if the probable consequences are what they want...and asked, as well, one more time, if they wish to reverse their behavior or continue.
    At Mom's 0015 med visit I didn't bother with this when she took so little water. She was clearly very drowsy. However, at her next med visit, which I have just finished, she took a little more water but still not much, her eyes were open, she was following my movements well and was clearly able to tell me that she was not in any pain and she was comfortable. So, I figured, it was worth a shot to explain the consequences of not drinking more water and not eating. After her meds and her breathing treatment I was as quick and gentle as I could be about it, but I also didn't beat around the bush. I told her that she had had very little to eat or drink in the last 36 hours or so. I told her that the consequences of this, especially of refusing liquids, were that she would weaken, soon irreversibly. Did she understand this?
    She said, "Yeeess."
    "Will you drink some more water?" I asked.
    She didn't verbalize, but she refused. She was clearly able to drink water by sipping through a straw, as earlier I had managed to give her about four ounces, so I waited for some minutes, prompted her, placed the straw between her lips and into her mouth several times, but she continued to refuse to drink more.
    I told her that the irreversible weakening from lack of fluids would likely bring on death. "Is that what you want?" I asked.
    "No," she said, a bit louder than her last response.
    I tried to get her to drink more, but she refused.
    Then, I got an idea. I told her that Hospice's policy is not to force liquids on her. I explained that if she wished, though, she could sign off Hospice, be admitted to the hospital and be rehydrated intravenously. I asked her if she wanted to go to the hospital.
    She said, "Yes."
    Just to make sure she understood what this meant, I asked her if she wanted doctors to put needles in her arm and give her fluids intravenously.
    She responded with an even more definite "no" and mumbled something that sounded like "sleep".
    "Do you want to sleep?" I asked.
    She said, "Yes."
    I'm a little conflicted; maybe I worded my questions and information wrong, but I'm not as conflicted as I normally would be. When she doesn't want to be fooled with at a hospital she pulls out IVs. I remember her doing this at her last visit in May and have noted, in the parts of the chart I received for that visit, that she did this more than I was aware at the time.
    So, I'll wait another four hours or so, check on her again, give her more meds to keep the pain away, see if her thirst prompts her to drink...and maybe ask the questions again, maybe not.
    Although she seems lucid to me, I don't know whether she actually is or whether she is disoriented. Disorientation is not a typical symptom of the morphine dosage she's receiving but, considering everything else, it might be a symptom of everything combined, right now. In addition, when she is fully functioning at the level that is relative to her, she is always adamant that she does not want to go to the hospital and does not want to be "poked and prodded". She voiced this decision a few days ago when I thought she had pneumonia and asked her, explicitly, how far she wanted to go to address it. Antibiotic treatment was all she wanted. Nothing else.
    I'll probably call Hospice the next time I check on her and medicate her, whether or not I ask her the questions, just to run my decision to keep her at home by someone. Still and all, it is apparent and I am aware that I am primarily responsible for the decisions about what to do, now, and the interpretation of her motives and responses. If her behavior continues as it is and leads to her rather quick decline and death, I will have been the executor of what I understand to be her wishes. Yes, I'm aware that an offshoot of that word is "executioner" but, other than having known, for awhile, that, just as we all cooperate in each other's creation and birth, we also cooperate in each other's death, I do not consider myself her executioner.
    The scheduled 0415 visit was postponed until 0530. I apparently turned off the alarm in my sleep and didn't awaken until 0520; but her breaths per minute and her lack of pain were the same as they have been since around 1700 yesterday.
    I've got the monitor on. I think it's okay for me to go back to bed and sleep. I've moved the alarm to the foot of my bedding area, so I will have to rise up to turn it off.
    I'll probably set it for about 0945...it seems that she can go for somewhat over four hours between meds and not experience pain or labored breathing.
    In case you're wondering why I'm recording this for the world to see...it's not just to enhance my eventual memory, this time. It's to shine some light on the process of coaching someone's life through to their death. On some level, this is what we're dealing with, here. I always wonder about this when I hear someone has died on Hospice. This is what it's like, folks, at least for Mom & Me. It's not a straight shot. Sometimes she seems nearer to death. Sometimes to life. I still have no idea how long the woman will opt for life over death.
    Later.
- posted by Gail Rae @ 05:50   email  this post