Monday, November 19, 2018

Palliative Care

We recently had a family meeting.

One advantage of having a large family is the portfolio of skills siblings bring along. My younger brother ran the meeting AND took notes. He took them by the simple expedient of recording it with his smartphone. He also graciously asked everybody's permission before recording.

One of the items on the agenda was the question of palliative care. For those who are not familiar with the term, think of it as "in home hospice". The goal is not heroic, life-saving medicine. The goal is to provide support and comfort as life winds down.

I suspect that the insurance companies love it because it has to be cheaper than plugging failing, elderly patients into multi-million dollar milking machines "for the duration".

Patients like it because they are not treated like fodder in some industrial process. They stay home with their loved ones.

Dad is resistant
Dad does not see how they fit into the medical ecosystem.

"Do they replace my regular doctor?" dad asked.

"No, you would still see Dr. Awesome on a regular basis." one of the nurses in the family informed him.

"Would they replace Tammi?" dad asked. Tammi is the woman who assists mom when one of the daughters/daughters-in-law are not available.

"No, they would not replace Tammi." we tell him.

"Would you guys stop coming?" dad asked. This may be one of his biggest fears, that we will scrape our responsibilities off on these palliative care people.

"No dad. You will still have 8-to-1 and 5-to-8 coverage from family members seven days a week." we tell him. Dad is in bed by 8 nearly every night.

"So I don't see what good they will do.  I have everything I need the way things are now." dad said.

I could see past dad and mom's face was working. Dad was so focused on the technical side of things he was not tracking mom's need to have something, some plan, to escalate the next time we had a crisis. After all, dad made it VERY clear he does not want to go back to the hospital.*

Palliative care is more for mom's need to do something more than hold dad's hand and say Hail Marys for his soul when she finds him laid out on the floor than it is for dad.

Dad is a stoic. If the family members cannot get an appointment with Dr Awesome until Wednesday then he is willing to suck-it-up.  Heck, what is a little bit of chest pain.

Mom is an empath. She feels the pain he does not. Palliative care means she can call them and know that some kind of help is on the way and will relieve her of being the pivot pin.

But before Mom can have that ability, palliative care needs to establish a professional relationship with mom and dad. She cannot call them out-of-the blue.

The resolution

We make a concerted effort to not treat our parents as fake-adults. We don't pretend to allow them control like you might pretend to give a mentally retarded adult to humor them and make it easier to manage their behaviors. We don't treat them like some goofy-but-lovable team mascot. They have actual control.

It cannot be denied that neither one of them are as mentally sharp as they were at the height of their mental powers. Dad used to keep a running tally as the groceries were checked out and correct the cashier when she double rang items or missed them.  He did that for fun.

But they are still piloting their own ship and doing a very fine job.

Dad told us that he needed to discuss the issue with mom. They weren't going to do that in front of us. I suspect it will take a week for them to sort it out.

The answer may still come back "No."

*Dad softened a little bit regarding going back to the hospital. If it were for a procedure that would improve his ability to take care of mom, like a cortisone shot for his knee, he is willing go to the hospital for the procedure. He does not want, however, to be plugged into the milking machine again.


  1. Bless you and your siblings. This is a very difficult time for your entire family. Prayers that Dad comes around in time to get to know the nice Palliative Care nurse, and that whatever agency you folks pick are able to help your Mom with all she will be dealing with.
    If nothing else, you folks have planted the seeds. Give it time to grow, and Dr. Awesome might be able to help as well. Sometimes it helps patients to hear from the doc, especially if it is a medical professional they have a lot of trust in.

  2. We have experienced something similar in our family. Mom and Dad have slowed down, but if presented with the facts and given time to process everything, they usually make a good decision that we all support. Sometimes at first blush, they jump and don't think through everything. They know they are in control, the kids support them and it makes a world of difference.

    Failing to plan is not good and results in poor decision making or having to select from poor options.

  3. Dear Mr. Joe,
    Based on your posts about your parents, I'm humbly asking for you to open a private communication with me.
    I've got a lifelong friend in a similar situation. Last weekend we moved his mom across two states to his home. elderly and requires a lot of help and care. To compound the situation, he travels professionally 4-5 days a week. I'm helping and another friend is helping as much as we can but this is a STEEP learning curve. we've got questions and no answers. I'm posting from my bland profile rather than my true name for privacy. Thank you in advance for any advice you can give.

    1. I see a couple of paths to get up the learning curve quickly.

      One is to call Hospice and ask for a couple of referals to "Traveling Nurse" type organizations that provide in-home, pallitive care. They will do the heavy lifting to see what benefits they can provide that insurance will pay for.

      Expect a "get-to-know-you" visit and to have a document called Seven Wishes dropped off.

      The other avenue is to call your friends mom's health insurance carrier and ask to speak to a social worker regarding hospice and pallitive care. They might not have one...but if they do, they will help stitch together a plan to "cover" for your friend's mom.

      Let me know if you need more specific information.

  4. Replies
    1. Were you successful?

      I have a "throw-away" email account but I would have to look it up. If you were successful I won't bother.

      If not, we can communicate.


    2. She is going to a nursing/rehab facility tomorrow. A family friend is the director there. If she makes progress with physical therapy and becomes more medically 'compliant' then she'll be moved back home. The biggest issue is that her son is on the road 4 days a week. So somebody needs to be there to assist her with getting from bed to wheelchair, to toilet chair, showering and all the other little details of life. And she was uncooperative and rude to the trained, qualified and vetted professional... Hard to motivate volunteers when you drive away the best hand on the crew.
      I trust my friends decision, I know he prayed and agonized over it. But he's still got estate stuff and loose ends to deal with. His plate's overflowing right now but it'll be alright.
      Thanks for your input.
      I'm cool with the throwaway account thing. toolrat is my grayman account. My spamcatcher is on hotmail, if you do contact you'll recognize my email from previous comments.
      I appreciate your blog. Its a daily read.
      Be blessed brother

    3. Give me a bump on

      I will monitor it daily for the next week.



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