The Diagnosis Is Terminal
What Do We Do Now?
A guide to help manage the journey through terminal illness
80% of you need 80% of this information
20% of you need 20% of this information
None of us know it all
If you can use one item it will be worth your effort
The Diagnosis Is Terminal
Allow me to describe the final journey in terms of you and your loved one driving from Vladivostok, Russia (North East coast) down to Beijing, China and then across to Moscow, Russia. You have some maps you can't read. 90%+ of the people you attempt to talk to do not speak English. You start with a handful of rubles and American credit cards. How do you pay for fuel? Where do you spend the night? Wait until you attempt to order food. This is not a detailed instruction manual. It is set up to show you where some of the pot holes are and to let you learn from actual experiences. Use this information to get you and your loved ones to thinking and planning ahead. Now; relate that to your journey. Here we go.
PRIMARY PROBLEM AREA: Total confusion
$$ USES: Hospitals – Doctors (nerves, lungs, lymph, x-ray/scans, oncology/cancer, bacterial/sepsis, hospice, pain control, cardio, etc.) - Nurses - Specialists - Physical therapists - Legal - Burial - Cremation - Memorial - Flowers -Hospice - Ambulance - Soc. Sec. - Medicare - Medicaid – insurance - grief counseling, etc. These are nice people but many of them lack communication skills. Also, it is next to impossible to touch base with the ones you need at the moment you want or need them. They are very busy people.
(3) First things to do:
(3:a) Legal instructions and requirements: copies, locations, and understanding, after you get over the shock.
1) The “Five Wishes” document (as of 2013) is legal in District of Columbia and 38 states. The Five Wishes has many check off sections for you. We both checked off the following heroic statement: "I do not want life support treatment. If this has been started, I want it stopped". I had to enforce this for Nancy. The ER was getting ready to put an air pipe down her throat. It turned out to be unnecessary.
The cover page of the Five Wishes shows the following: It is an eighteen page document.
A) The Person I Want to Make Care Decisions for Me When I Can't
B) The Kind of Medical Treatment I Want or Don't Want
C) How comfortable I Want to Be
D) How I Want People to Treat Me
E) What I Want My Loved Ones to Know
2) Department of Veterans Affairs has a “Durable Power of Attorney for Health Care and Living Will“.
3) Most states have their own documents. * Try aarp.org and search "advance directive". Section #1
Exception Statements samples:
My opinion is that you should literally show these following two statements to ALL your supporting medical staff including doctors.
a) Should a situation arise where my health care agent(s) feel I would like to have input on a situation or decision, I would like pain medicine reduced as needed, so that I can be alert. Nancy wrote and added this one herself.
b) If I am under heavy medication that makes me unable to communicate, and death is positive, ask my care giver if it would be time to bring me back to where I can say my last goodbye. This is the one we did not think about.
Impacts of drugs.
Doctor's note @ 9:27 AM on Wednesday 6/5. (I have some 160 pages of these JMC). Patient more agitated and delirious overnight. Today recognizes me and says “Stop all this. Let me go.” Had emotional interaction with husband last night. Patient was delirious accusing everybody in the unit of trying to kill her, including her husband. She kept pulling the O2 mask off, will treat her delirium with haldon to insure her safety. (No one ever told me about this. The medical community will love you to death JMC).
I then returned to the room, and her countenance had relaxed and with peace in her voice and on her face, she turned to me and told me “I forgive you” and she let me hold her hand again as she waited for God to take her. Her forgiving me was the absolute best moment of my life. Later that day she told me "I love you”. What a wonderful blessing from a giving woman. Those were the last words she was ever able to say to me. This was the greatest gift of my life. You will find comfort in the future if you have something of this nature to remember.
Nancy was a Christian woman of great faith. She knew God was waiting for her. I believe she was tired of fighting and wanted to go home to Him. During this period I made the most difficult decision I have ever made. I quit asking God to keep her on this earth, and began to pray for God to take her home to heaven. I know it was the correct decision, but I felt like it almost killed me.
Jim M. Coston Jr. is a retired engineer and systems designer. His background makes him qualified to dig into and present the details that both the patient and caregiver will need to deal with during the final terminal journey. Jim has managed and owned two software companies and a tax and consulting firm. This is where his ability to comprehend, access, and present detail becomes invaluable to the reader. He presents the information in a easily understandable black-and-white manner.