TOLLS ON THE HARD ROAD

In better days loing ago

Today was a sad day filled with emotions that like a simmering volcano will erupt momentarily to the surface!

My daughter Ellen had to have a tracheotomy to help her breathe as the doctor's fight to save her life. She lies quietly in her hospital bed not understanding what is happening to her body, she doesn’t know why or how she got into her present state.

The surgeon did not only the tracheotomy but also ran a camera down her stomach to ascertain if there were any blockages keeping her from eating aside from the tube running down her nose. She has not eaten since April nor walked since August.

And, here lies the problem; we are afraid that she will rip out the tracheotomy tubing causing damage. If she does she will have to have her hands tied down to prevent it from happening. She is confined to her bed or a wheelchair for the rest of her life.

If one problem is not enough here is another; she needs to pass a swallow test to see that she won’t affixiate her secretions or any food she eats if she can’t the tracheotomy will be a permanent part of her life! Being tied down like an animal is no way to live, especially in a bed or wheelchair. The wheelchair is if she is lucky. We have to now approach the Molst form as a possibility for her so that she does not live like a dangerous animal which she is not. The Molst Form is for end of life terminal cases that go through the NYS Health Department, needing at least 2 doctors to agree to. This will be the hardest part of it all, playing God with the help of the State of New York!

Pray for us.

Medical Orders for Life-Sustaining Treatment (MOLST)

Honoring patient preferences is a critical element in providing quality end-of-life care. To help physicians and other health care providers discuss and convey a patient's wishes regarding cardiopulmonary resuscitation (CPR) and another life-sustaining treatment, the Department of Health has approved a physician and nurse practitioner order form (DOH-5003), Medical Orders for Life-Sustaining Treatment (MOLST), which can be used statewide by health care practitioners and facilities. MOLST is intended for patients with serious health conditions who:

•    Want to avoid or receive any or all life-sustaining treatment;

•    Reside in a long-term care facility or require long-term care services; and/or

•    Might die within the next year.

Completion of the MOLST begins with a conversation or a series of conversations between the patient, the patient's health care agent or surrogate, and a qualified, trained health care professional that defines the patient's goals for care, reviews possible treatment options on the entire MOLST form, and ensures shared, informed medical decision-making. Although the conversation(s) about goals and treatment options may be initiated by any qualified and trained health care professional, a licensed physician or nurse practitioner must always, at a minimum: (i) confer with the patient and/or the patient's health care agent or surrogate about the patient's diagnosis, prognosis, goals for care, treatment preferences, and consent by the appropriate decision-maker, and (ii) sign the orders derived from that discussion.