Meeting Recap

Thank you to all of you who attended last night's Peg's Legs Meeting. For those of you who missed the meeting, here is what was covered:

After we all chatted for a bit and ate some food, Cory and Cathy began the meeting with a very interesting exercise. Cory had us all tape our mouths shut with masking tape, then she taped a feather to each of our faces. Next, she taped us to our chairs in awkward positions. She asked us all not to talk and to really get into the moment of the exercise. Then Cory made up a shocking lie about Peggy - no one was sure what was going on - was she telling the truth? As we sat there unable to talk, Cory asked Cathy to walk around and poke us lightly with a pin. We all wanted to talk and ask questions and figure out what was going on...we were uncomfortable, the feather was irritating -- well, that was the point Cory was trying to make.

Cory instructed us to take off all the tape. She told us that she made up the things she said to shock us as part of the exercise. She asked us - did you want to scream out, were you uncomfortable? Well, this just gives you a little taste of what Peggy lives everyday. The reason Cory did this exercise is that she wants everyone to understand Peggy's wishes once she loses the ability to communicate with her eyes and becomes "locked-in". I will now explain that further. To do that, I will share a clinical synopsis from our meeting with Peggy last Saturday. This is all documented and will be added as an addendum to Peggy's current Advance Care Directive:

June 14th
Purpose of Meeting: To discuss with Peggy the fact that communication is becoming more difficult as she continues to lose the ability of using her eyes for communication and is becoming closer to being "locked in" as a result and to discuss her options and end-of-life wishes

Peggy was allowed total freedom to explain her wishes, ask questions, participate in the dialogue of defining elements of her end-of-life care plan, and freely made her own choices regarding the issues discussed. As a result, the following changes have been implemented and an end-of-life plan put into place.

1 - Code Status changed from FULL CODE to NO CODE (Do Not Resuscitate). Eric Chun to sign the NO CODE/DNR order as the MPOA/Health Care Proxy

2 - Peggy does NOT want to live and continue life support once she is locked-in and has no way of communicating and interacting with the world. She explained that she has experienced moments of feeling this and described it as "being buried alive waiting to die". She also stated that "The thought of being locked in is terrifying. I think about it constantly"

3 - Locked-in is defined by Peggy as NOT having any eye movement whatsoever and therefore having no way of interacting with her world or communicating her pain, discomforts, fears, and anxiety

4 - The core group for validating locked-in is Dr. Davis, 2 family members (one MUST be Eric Chun as the MPOA/Health Care Proxy), 2 RNs from Health Care Alternatives, and 2 Peg's Legs Private Hire/A Caregivers

5 - Once it is suspected that Peggy is locked-in, the core group will assess and validate. Once the group unanimously agrees that Peggy is locked-in, steps will then be taken to make her comfortable adn there will be NO aggressive medical intervention or treatment for infections. Dr. Davis described that Peggy will most likely become heavily sedated as there is no way of identifying pain or discomfort and she will be slowly weaned from her mechanical life support.

6 - Peggy does not wish to be locked-in for a prolonged period of time. At the time she becomes locked-in, Dr. Davis will make the actual time determination which will probably be several days and NOT weeks or months of being in the locked-in state.

7 - Peggy does NOT want her model of care to change from the medical model to a comfort care model UNTIL SHE IS LOCKED-IN. Until then, she wants agressive medical intervention and treatment for ALL infections. The only exception is CPR.

8 - Peggy has agreed to the Hospice referral "providing Clarence Liu can be a part of it". Clarence Liu, Chaplain agred to be directly involved in addition to Hospice staff.

End

Obviously, these are some very serious, sensitive issues that we wanted to share at the meeting and here on the blog as well. But we feel that it is very important that all of you - Peggy's extended family - understand what is going on with her and her care. We also want to share this information because we respect everyone's end-of-life philosophies and belief systems and if anyone feels conflicted about Peggy's choices and unable to support her choices, we want them to feel free to "opt out" now.

Most of the rest of our meeting was spent discussing details of Peggy's care and understanding the decisions above. To be clear, nothing is really changing with her care until Peggy's eyes become locked-in with the exception of her code status. This just means that if Peggy has a heart attack, she does not want CPR. It is VERY unlikely that Peggy will have a heart attack. If any other medical emergency occurs, you will still call Healthcare and/or 911.

No one knows how much time we have with Peggy. No one knows how long we have until her eyes become locked-in. It could be days, it could be months, maybe longer. The point is that we need to plan and we need to support Peggy and each other through this stage of the journey. Please feel free to ask me any questions you have about all of this and please communicate with each other as well - if you didn't attend the meeting, please talk with someone who did. It is more important than ever for our team to all be on the same page.

I feel like there is so much to say, but this is a lot to process as it is, so I will leave you with Peggy's words instead. I asked Peggy to write something for me to read out loud at the meeting. Here is her letter to all of you:

Dictated by Peggy on July 17, 2007

Dearest friends and caregivers:

I went to Catholic school for 16 years where I was taught the blessing of a fine handwriting skill; however, having lost that ability to communicate gives me absolutely no excuse for dereliction of another virtue--hello and thank you letters. Fortunately I see many of you on a consistent basis which allows me the illusion of having written every one of you at least once in the past year so accept my overwhelming gratitude and apologies for not writing more often.

At this stage of ALS I've come to realize that I've been so preoccupied with my own fears that I have excluded you, my caregivers. Recently it took a huge awakening about how I take even my hardest working and most loving caretakers for granted. Thank you Lolo, Kelly, Dr. Davis, Clarence, Cory, Cathy, Eric, and Kimi for being loving enough to have the courage to confront me with the truth of what I knew at a deeper level.

I have so much to say but my spelling slaves are exhausted!

We are working on a list of caregiver tips to use when I am locked in. I want you to know that we are bringing in Hospice and I have changed my ER status to NO Code. This is not as dramatic as it sounds. It simply means that I will have more opportunities to see Clarence. The No Code means that I won't be resuscitated in case of any heart related issues. I'm sure I don't need the additional neurological damage from a heart attack. God will let me know when it's time.

Know that the purpose of this letter and the meeting on the 18th is to prepare all of us for the likely case that I may become locked in.

Finally, do you realize what you have given me? An additional 5 years of a full life, not a stagnant life. I got to see my loving son wed our beloved Kimi, got to be here for the birth of Indy & Sawyer. And the birth of my twin sister's two granddaughters, Jade & Cian. How can I ever thank you for all you have done for me and continue to do for me everyday?

I love you all,
Peggy