One little needle…


While others write hilarious blogs about potty training and the challenges of young families, real as they are, this blog is about the other end of life, the POLST…big pink cardstock?…affix it to the refigerator?…(Physician Oders for Life-Sustaining Treatment)? I had to use it (sort of) last week. Now I have more questions than answers and need advice from my daughter the nurse.

Years back Mom checked ALL the boxes. Now at 94 and with Alzheimer’s Disease she still insists she wants only comfort measures: do not resuscitate, no nutrition by tube, no antibiotics if unconscious, with the phrase, “Patient prefers no transfer to hospital for life-sustaining treatment,” outlined for emphasis. She just wants to pass into the arms of Jesus and only be kept as comfortable as possible at home. Before this intestinal virus, she was bowling in three leagues every week. Granted, her average is slipping, but she still beats any of my grown children.

Still, when quite frightened and confused last week as I checked on her before going to bed myself, she wanted the doctor at 9:30 p.m. An ambulance was the only way I could “keep her comfortable,” so off we went. The paramedic’s reaction to the POLST surprised me a bit. He did not hook up an IV en route. It turns out that her blood sodium, from an intestinal virus and dehydration, had plummeted to near convulsion and coma levels. As her appointed decision-maker in matters of health, I agreed with the ER doctor’s suggestion to correct that imbalance with IVs of sodium. It took two days before they released her from the hospital, albeit in a much more confused and very weak state.

Was I right? I did not carry out her desires as directed on her POLST. Instead I did what she asked for when in distress and not very rational. She entrusted me with the job of being rational when/if she was not. But was I rational? One hundred years ago, Mother would have gone home to be with Jesus from this minor illness. Today, doctors use one little needle and brought her back to functioning, albeit having taken quite a hit physically and mentally. 

One little needle, one pink paper, but did I perform one little act of kindness or did I, in fact, disregard her wishes? Maybe in today’s world of medical advances, I’m bound to disregard her wishes. Whew, I definitely need some advice. Guidelines must exist for these kind of decisions!

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8 responses to “One little needle…

  1. Dorothea,
    These things are so, so hard!! As I look back at my mom’s last years, I sometimes wonder if we were selfish in expecting treatment for all her “small” but potentially life-threatening illnesses. Yet, we we were doing what we believed to be right at the time. Mom’s POLST provided room for family decisions in consultation with the physician regarding antibiotics and other less-invasive treatments. Do you think your mother could rationally discuss this issue with you now that she’s better?
    Leanna

    • Dorothea,
      Here is one more thought for you. When my mom’s time came, there was really nothing we could do to reverse the situation. We could have tried some things, but they would have been “extraordinary” measures and probably would not have changed the outcome . When she died, we knew without a doubt that it was her time to go. Don’t feel guilty for giving your mom basic medical care, especially when she asked for it. When it’s time for her to go home, she will go. I hope that doesn’t sound too fatalistic.

      Leanna

    • I think she could rationally discuss it now, espcially since it has come up and the little boxes mean more to her at this point in time. Some years back it was more of an “all or nothing” mentality I heard. Now, I think she’d say differently. We will certainly revisit these POLST boxes when she gets back from Bonnie’s this weekend.

  2. I agree with Cheryl’s post on Facebook. Mom is the best judge of what care she should receive. I believe that in light of her decision to get doctor and hospital care, you guys should revisit the POLST form together and consider whether changes are needed. It sounds like she was brought back to health using very basic measures that the POLST would have prohibited. To me, it would be a tragic and senseless end for someone to die when all they needed was basically to eat something salty and they would be fine. Every time I hear from her when she’s recovering from something, all she talks about is the desire to get healthy and get back to bowling again. She never did like to “just sit and do nothing.” That kind of love for life seems incompatible with the boxes that are checked (and not checked) on that form.

    My mother-in-law had cancer, and she knocked it down with chemotherapy, but when it came back again she said she didn’t want any more treatment. It was a little surprising to us, because she was somewhat physically active and seemed to enjoy life, but she made the decision when she was rational, and she stuck by it for several months while her health declined. In retrospect, I believe she just got tired of fighting the cancer every day. If at any point she had said “help me,” we would have jumped into action, but she didn’t, so we didn’t. It seems to me that a “help me” call overrides all the blank check boxes on any form.

    As for me, if anyone ever says “he was tired of life and wanted to end it,” be very skeptical. As long as there’s one more person to meet, one more interesting fact to be learned, one more joke to share or funny video to watch, or one more cool computer program to install and play with, I want to be there to enjoy it if I can. So Doc, hook me up to all those wires and machines and pump me full of those experimental fluids. If I’m whittled down to an animalistic brain stem like Terri Schiavo, or Alzheimer’s turns me into someone hateful that I wouldn’t want other people to meet, then pull the plug, but if you see a spark of intelligence, then fan it back to a flame.

    • Yes, Harold, she always wants to get better and back to bowling. This hospital stay really knocked her for a loop, though, and she was ready to stop bowling all together, feeling so weak, and as if she would never be without her walker again. I encouraged her to wait at least one month to see if she could get stronger with exercise before quitting the leagues. It is her only exercise and socialization outside of church on Sunday. I will have to get another big pink card and fill it out again, while we sit and talk about this recent illness. It certainly put things in persepective and made me, at least, realize that saying she doesn’t want transport to the hospital or an IV, seem unreasonable at this stage of her life, though her Alzheimer’s is progressing faster and faster as days pass. (I think she’s in the placebo group for the Phase III trial of the new AD medication, or maybe she is getting it and it just isn’t working. Either way, she gets progressively less able to answer the standard questions on the test they give her monthly.) I know it is a hard time for you both financially, but you should come see her sooner rather than later if you can, in my humble opinion. Or, invite her down for a week, if that’s easier and you would enjoy that.

  3. Mom,
    There is a difference between taking someone to the hospital to be rehydrated for an acute illness and taking someone to the hospital to recieve life-sustaining treatment, such as invasive surgery, CPR, or intubation. Had you let this one go, it would not have been a comfort measure. To keep her comfortable you needed her to be seen. She was very uncomfortable, and what she needed to be made comfortable was minor, non-invasive treatment. This POLST should stand as it is, as grandma made these decisions in a rational state, and the POLST form is only a guide for you and the doctors to use, so that you understand what her wishes are.
    You are a wise daughter and that is why grandma appointed you to make these decisions when she can’t, because she trusts that you want what is best for her. And if you ever need help making the decisions, you have a 24-7 on call, geriatric nurse in the family 🙂

  4. Ah, now that term “transport for life-sustaining treatment” makes much more sense…it’s heroic measure in layman’s terms, not simple rehydration. Thank you, my geriatric nurse, for clearing that up. And I’m glad to hear that the POLST is a “guide” rather than something I’m violating. Yes, thank you, I do want what is best for her. Today she is excercising by going round and round the house with her walker and sometimes without it! I’ll keep encouraging her to get back to bowling as soon as possible.

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