There is no better time than now—with me in my 69th year—to make clear to all of you how I want to spend the last few years, months, weeks and days of my life on this earth. Many of you will receive a copy of this letter and not just family but friends, clinicians and pastors will receive this as well. This way about 100 of you will have this important message from me. It might surprise you to read this as you know I’m not sick and nearly never sick but we all know what it says in Psalm 90:10.
When I am no longer able to do the things that are important to me such as breathe on my own, chew and swallow food, toilet myself, carry on a conversation, recognize people I know, read, etc., (unless I am healing from what is considered to be a short-term issue where full recovery is anticipated), I direct that medical care be withheld or withdrawn and that I be permitted to die naturally with only the administration of pain medications and other symptom-control medications to keep me comfortable.
Let nature take its course is my theme. When I can no longer speak for myself, my trusted proxies will execute the following:
Hospice care should be ordered by either a doctor who is on the case or accessed (a simple phone call) by a family member or either of my healthcare advocates who both have my durable power of attorney for healthcare, Falyn Curtis or Dr. Pat. If I have some sort of calamity in public, I realize that 911 will be called, CPR will get done to me if needed to keep me alive and I will get taken to an ER. Hopefully, very quickly after that, my healthcare advocates will be contacted and they will implement this plan. If I have a calamity at home, do not call 911. No healthcare provider, including EMTs, is allowed to touch me without consultation with Ms. Curtis or Dr. Pat. Dr. Pat said she would not let me die on the floor, so I guess someone is allowed to pick me up off the floor and put me on a bed or sofa.
I forbid and choose to forego CPR, surgery, chemotherapy, dialysis, tests, ventilation, feeding tubes (no tube down my nose and no percutaneous endoscopic gastrostomy tube), blood transfusions, antibiotics or IV hydration. I do not choose to die in a hospital or any other institution. The exception would be a Hospice in-patient facility due to the need for its pain and symptom management capabilities.
I authorize the withholding of artificially provided food, intravenous fluids, and other nourishments. If I cannot give directions regarding my medical care I intend for my family and physicians to honor this declaration as the final expression of my right to refuse medical care, food and water and I accept the consequences of that refusal. No family member—my husband, my siblings, my nieces and nephews—may override this directive and no family member is in charge of my death and dying. I am in charge per these directives even if I have lost my mind (cognitive functioning), or my ability to communicate. My advocates agree they will follow this directive.
A few more details to be very clear . . .
If I cannot feed myself, swallow, enjoy food, prepare simple meals, toilet myself, walk to my mailbox, (in healthcare-speak, these are called the activities of daily living or ADL) recognize my family and friends, carry on a conversation, read, write emails, and search the Internet, I want no more doctor’s offices, no more hospitals, I will stop taking any medication (except to mitigate unpleasant symptoms such as pain, nausea, shortness of breath or agitation) and will not call 911. This means DNH: do not hospitalize. It means keep me comfortable and let nature take its course.
This means, I may stop eating and drinking and do not want to be forced to eat or take water. I want hospice care with Falyn Curtis and/or Dr. Gary (who both have my durable power of attorney for healthcare) making sure that everyone sticks to this plan.This means I should die within 7–10 days if I am a textbook case, however, experience teaches and experts say that it could take longer. It could take much longer as no one of us is in control. Don’t worry about this because hospice clinicians will be on the scene and you will not be alone. They have seen it all and will be a comfort to you.
If, in the dying process, I say I am changing my mind about all of this: Do not listen, and stick to this written plan. If I cannot speak for myself or if my mind—cognitive functioning—is gone, I forbid anyone to alter this directive and I repeat, do not force me to take in food or water. I have learned from palliative care nurses that feeding some people is painful to them so don’t imagine that feeding me is loving me. Feeding me is not loving me. Not feeding me is not you killing me. Not feeding me is letting nature takes its course. Not feeding me is putting me fully, wholly and kindly into the hands of my God.
Please recall the words of Jesus, “He who eats me shall live by me, and shall live forever” (John 6:51). This dying process is not physical, it is not medical, it is transcendent; and comfort only comes from God bringing me to himself. Read page 199 of Dallas Willard’s book The Divine Conspiracy, and you will understand better what I am saying.
I am ready to go back to God. I am ready to go home. You can hang up a sign that says, “SHE’S GOING HOME.” Then when I die, you can flip over the sign and it should read, “SHE’S GONE HOME.” I am not afraid and I don’t want you to be afraid for me or for yourselves.
Please realize that these instructions will be followed not based upon treatment starting or stopping; these instructions will be followed based upon how I choose to live out my last days. These instructions apply even if all I have is dementia. I do not want to be given any medical treatments or food or water when I reach the point I have described at the top of this page. Only provide palliative care with the help of hospice professionals.
If Bruce is still living and he doesn’t want me to die in our bed or in our house, I understand that and I suppose a hospice service has a bed for me somewhere.
I do hope you’ll come and visit if you like but never feel that you have to and don’t come because you feel guilty. Only come if you want to see how it is all working and if you have something to read to me or tell me.
Please play music . . . hymns, praise and worship songs, opera arias (no Wagner and only the big famous songs, never the whole opera), all the famous symphonic works (no Mendelssohn and no Mozart, as they bore me and I love the Russians). Play Bach any time you don’t know what else to play. Or, play any Yo-Yo Ma recording. No TV. Play Casting Crowns, Selah, David Phelps, Larnelle Harris, Wintley Phipps. At least once a day, play my favorite song, “Give Me Jesus” performed by Fernando Ortega.
Have some fun! You can read the Psalms out loud but not the laments or the ones about being chased by enemies.
Thank you, sweet ones. I am singing in my head, “Swing Down Chariot, Come and Let Me Ride” and “Angel Band.” You’ll find these songs in my stack of CDs if you want to sing along.
My latest sun is sinking fast, my race is nearly run
My strongest trials now are past, my triumph is begun
I know I’m nearing holy ranks of friends and kindred dear
I brush the dew of Jordan’s banks, the crossing must be near
I’ve almost gained my heav’nly home, my spirit loudly sings
The holy ones behold they come; I hear the noise of wings
O come, angel band come and around me stand
O bear me away on your snowy wings to my immortal home
O bear me away on your snowy wings to my immortal home
With joy I have you in my heart,
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