This past week I had to do something that I hoped I would never have to do. I had to sign a do not resuscitate order (DNR) for my mother. When the doctor told me on the phone that we had reached a point where it would not be helpful for my mother to be resuscitated, I agreed with him. When the DNR form came through the fax machine however, I found myself resisting signing it. Why? I know it is what my mother would want -- not to be resuscitated when her body was naturally shutting down. And yet, signing something that is titled "Do Not" flies in the face of that. My mother's body is naturally aging and her organs are "getting tired." Her kidneys are beginning to shut down. Her body is beginning its "natural" process of shutting down. So, why am I signing something that says not to do something?
I am a professional chaplain and for the past 20 or so years I have been helping families make this very same decision. I have stood with them when the doctor has told them that their loved one's body is shutting down and resuscitating them would cause more harm than good. I have held them when they have cried and prayed with them as they made their decision. At those times, I wondered if I would have the strength they had if I ever had to face this decision. Would I be able to sign something that says "Do Not" do something for or to my loved one? Well, as I read through the DNR form for about the 10th time, I found myself changing the language in my own mind to "Allowing Natural Death," a term I learned several years ago. It was only after changing it in my mind that I was able to sign and fax it back to the doctor's office and feel at peace with that decision.
Language is very important to us. We define who we are by the language we use. In Texas, they use "Allow Natural Death" (AND). From what I understand from my chaplain colleagues, other hospitals and long-term care facilities around the country are having conversations about changing the way that they approach families concerning how their loved ones are to be treated as they near the end of their life. Lee Memorial's HealthPark Medical Center, in Fort Myers, Fla., is one of the hospitals that is using an AND approach. And there are others outside of Texas that are moving in the same direction. Since I signed that form, I am all the more convinced of the need to change the form to "Allow Natural Death."
I have been fantasizing about a way to approach the N.Y. State Legislature about this. It feels like too large a project to undertake, especially since it took more than 18 years for the N.Y. State Legislature to pass a law that most other states already have -- a surrogate decision-maker law. So, for now, I will have to help families figure out how, for themselves, they can sign a "do not" form while "allowing" the body's natural process to move forward.
I want my mother to die with dignity -- dignity as she would define it. And I know that she would define it as dying "naturally" -- not with people pounding on her chest and trying to re-start her heart, or intubating her so that a respirator might force air into her lungs and re-start her organs that had already begun to naturally shut down. This doesn't mean that I am not already beginning to grieve her death; I am deeply sad that she is dying. But I am also prepared to give her the greatest gift I can give her by abiding by her wishes: that she die with the same dignity with which she lived for her 85 years here on earth.
Dale Goldsmith and Joy V. Goldsmith: Is There Such a Thing as a Good Death?
Marie Marley: Make Alzheimer's End-of-Life Healthcare Decisions Long Before You Need Them
Rev. Dr. Martha R. Jacobs: Are You Making Decisions About Your Health Care in a Vacuum?
Barron H. Lerner: Do Not Resuscitate Orders: Time for Another Change
I've also had that discussion with my parents as well, and they already have plans in place should such an event occur. Both parents have signed paperwork stating that they want no heroic measures to be performed should they become sick or injured to the point that there's no hope of a meaningful recovery. My sister and I both share power of attorney, although since she's living in London at the moment, it means that such a decision is going to land largely in my lap. However, I have no reservations about being able to follow their wishes, having seen the suffering my maternal grandmother went through before she finally died. I swear we treat our PETS with more dignity and humanity at the end of life than our human family members!
Of course, I also have a health care directive, and will update the letter as years go by. But as I age the specter of some wacko nurse threatening to go to the D.A. for pulling the plug on me becomes even more horrifying.
In my youth I clerked for a judge who had to decide to end life-support for a 2 year old who had sustained massive brain damage. The parents had agreed to let him go, then some idiot nurse threatened to go to the D.A. The parents were put through hell. The father lost his job and medical insurance, the strain on them was inhuman. It's the only time in my life I've ever seen anyone whose skin color was grey. The ordeal lasted 7 months until the judge - an RCC with 6 kids - held that the child's lawyer could end this misery.
It seems that if you talk to your loved ones and they know exactly what you want, and then you sign all the paperwork that says that, there should be no problem with the hospital or hospice when the time comes. My parents did this, we did this, even our children who are in their thirties have done this--so there is no question, there will be no agonizing.
It is not easy to let go of ones you love, no matter how the paper is worded. But those papers--knowing you are doing what the patient wants-- do make it less agonizing for those who are left behind.
The term "Allowing" frankly gives them too much permission to disobey the clear intentions of the document.
Your post gave me the creeps by the way...
but --- you better make some IRONCLAD -TITANIUM braced diamond coated plans on that one