Wednesday, March 11, 2015

On Maryland's "Death With Dignity" Act Bill SB 676/HB 1021

This is my testimony to the Maryland House of Delegates. It was personal and very difficult for me to write. No one should assume they know what it is like to be in palliative care, in a terminal ward, or be diagnosed with a terminal illness. Whatever your opinion is now, it may change should a moment like this come. In order to deal with this topic we need to change our own prejudices on the perceived limitations of human beings, their wish to live, and educate citizens throughly on living with terminal illness and not conflate disability with terminal illness before mandating any form of assisted suicide. We should also look carefully at history and data in countries who have implemented this for years. Anyway here is my statement:

Statement to the House Health and Government Operations and Judiciary Committees
Re: House Bill 1021 – “Death with Dignity”
Friday, March 6, 2015

Main Concerns:
1. The legislation does not require doctors to give patients a screening for depression before providing physician assisted suicide.  

2.  Patients can request physician-assisted suicide if a doctor has diagnosed them with a terminal illness and six months or less to live. Such a prognosis is nearly impossible to accurately predict. 

3.  No doctor, nurse, or independent witness is present when the lethal dose is taken.

4.  People will pick up their lethal prescription at their local pharmacy.

5.  There is no requirement to notify family members that the patient plans on taking a lethal medication.

Thank you, Chairman Hammen and Esteemed Members of the Committee, for allowing me to share my own experiences with terminal illness, disability, and my grave concerns about the proposed legislation with you.

Pain Free, Not Dead, Ward C, Landstuhl Army Medical Center,
December 1981
My name is Kerima Cevik.  At age 20, I found myself in ward C of Landstuhl Army Medical Center, blind, emaciated, in horrific pain, and waiting to die. Ward C was the terminal ward, and the plan was to administer palliative care while the entire medical team tried to discern what was causing my eyes to hemorrhage and my vital signs to fail before I died completely. My family in the U.S. had been told that even if my parents rushed to Germany from the U.S., I’d be dead by the time they arrived. The last sound I remembered was the sound of running footsteps and someone shouting, “I know what it is!" "Hurry!”

When I woke again I was both alive and free of pain for the first time in a year. I was told I was lucky to survive, but I would be permanently visually impaired and would probably need to wear prosthetics in one eye. A year later, my eyes recovered such that no prosthetic or assistive technology was necessary for me to manage.

At 27, on Incirlik Air Base, a specialist reviewing my latest tests and x-rays informed me I was in the final stages of Crohn’s disease and had less than six months to live. He recommended I insure my affairs were in order and say goodbye to my loved ones, as they could do nothing to stop the progress of the disease. I did. Then I obtained a referral to Walter Reed Hospital for a biopsy and second medical opinion from another specialist. It turns out that I was not terminally ill after all. I had been misdiagnosed.

When I was 38, a specialist treating my asthma decided to have x-rays taken of my sinuses because I was complaining of severe headaches. He discovered a large tumor under my forebrain. He referred me to other specialists and they did extensive tests on the tumor. The results of the tests were that the tumor was benign, a variety of fluid filled growth that mimics a malignant tumor.  It was decided to monitor the tumor to see if it would expand and impair me further.

Three years later my husband and I learned that after 19 years I had entered a second, high-risk pregnancy. In the third trimester of my pregnancy, cerebral imaging showed that somehow the pregnancy had shrunk the tumor in my brain and it was completely gone. My son and I survived his birth.

I imagine that, after any of those moments when I was deemed terminally ill, had a piece of legislation such as this one been the law where I was receiving medical care, I would have met the criteria for assisted suicide. If my family had believed the initial diagnoses and pressured me, or had I entered a depression regarding any of these diagnoses, I would have been dead at 20, or 27, or 38 years of age. I am very much alive at age 53.

Medicine is not an exact science. Those who initially diagnosed me were not incompetent. They had simply never encountered a patient with my combination of symptoms who did not fit their diagnoses. No medical professional can accurately estimate the lifespan of any patient. Thus the inherent risk in basing a law on the idea of a medical declaration of a limited lifespan.

I am a resident of Montgomery County, and mother to Mustafa Cevik, a wonderful 12-year-old boy with multiple intellectual disabilities and nonspeaking autism. Our son is nonspeaking, but over time he developed his own gestural language in order to communicate his needs.  My son has many health challenges. I have a deep concern that if this bill becomes law, it will expand away from its intended purpose and become a danger to patients like my son.

The example of the Netherlands is a clear indicator of what happens when assisted suicide laws exist to be expanded upon. Quoting the Disability Rights Education and Defense Fund’s research into this matter:

“Herbert Hendin documented how assisted suicide and lethal injections have become not the rare exception, but the rule for people with terminal illness in the Netherlands."

"Hendin stated in Congressional testimony, “Over the past two decades, the Netherlands has moved from assisted suicide to euthanasia, from euthanasia for the terminally ill to euthanasia for the chronically ill, from euthanasia for physical illness to euthanasia for psychological distress and from voluntary euthanasia to nonvoluntary and involuntary euthanasia. Once the Dutch accepted assisted suicide it was not possible legally or morally to deny more active medical [assistance to die], i.e. euthanasia, to those who could not effect their own deaths. Nor could they deny assisted suicide or euthanasia to the chronically ill who have longer to suffer than the terminally ill or to those who have psychological pain not associated with physical disease. To do so would be a form of discrimination. Involuntary euthanasia has been justified as necessitated by the need to make decisions for patients not [medically] competent to choose for themselves.”[106]”

“Hendin has also described how the government-sanctioned studies suggest an erosion of medical standards in the care of terminally ill patients in the Netherlands: 50 percent of Dutch cases of assisted suicide and euthanasia are not reported, more than 50 percent of Dutch doctors feel free to suggest euthanasia to their patients, and 25 percent of these doctors admit to ending patients’ lives without their consent.[107] Further, he reported that, for a thousand people each year in the Netherlands, physicians have ended their patients’ lives without consulting the patients.[108]”

Our State legislature voted to make physician assisted suicide a felony in 1999, and rightfully so. This bill, as it has been introduced, is very open to the abuses and decline of palliative care happening in the Netherlands. It makes me fear for our son’s well being and for the future of our great State. Our General Assembly is ahead of its time in many decisions it makes and laws it passes, but this bill is not a step forward. I fear it is a step off a cliff.

Thank you for your time and consideration.

Mrs. Kerima Cevik

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