The message was loud and clear: “I can help you die …”

“I was asked ‘if I understood the gravity of my condition.’ Yes, I said, I am well aware of the implications.”

Bill Peace’s story is told in full elsewhere, an essay about the severe wound he had in 2010 and in particular one experience he had late one night, an event that he says has “haunted him”. Here are some excerpts:

The doctor, wrote Peace, “grimly told me I would be bedbound for at least six months and most likely a year or more. That there was a good chance the wound would never heal. If this happened, I would never sit in my wheelchair. I would never be able to work again. Not close to done, he told me I was looking at a life of complete and utter dependence. My medical expenses would be staggering. Bankruptcy was not just possible but likely. Insurance would stop covering wound care well before I was healed. Most people with the type of wound I had ended up in a nursing home.

“This litany of disaster is all too familiar to me and others with a disability. The scenario laid out happens with shocking regularity to paralyzed people.

“The hospitalist went on to tell me I was on powerful antibiotics that could cause significant organ damage. My kidneys or liver could fail at any time. He wanted me to know that MRSA was a life-threatening infection particularly because my wound was open, deep, and grossly infected. Many paralyzed people die from such a wound.

“His next words were unforgettable. The choice to receive antibiotics was my decision and mine alone. He informed me I had the right to forego any medication, including the lifesaving antibiotics.

“If I chose not to continue with the current therapy, I could be made very comfortable. I would feel no pain or discomfort at all. Although not explicitly stated, the message was loud and clear: I can help you die peacefully. Clearly death was preferable to nursing home care, unemployment, bankruptcy, and a lifetime in bed.

“I am not sure exactly what I said or how I said it, but I was emphatic—I wanted to continue treatment, including the antibiotics. I wanted to live.

“I never told anyone about what transpired. Not my family, friends, the nurses I saw for over a year when I was bedbound. I did not tell anyone for a very good reason: I was scared. Terrified really. A physician, a person who is highly educated, and I would hope free of any bias, considered my life not worth living. Disability was a fate worse than death. It was the ultimate insult.

“People with a disability do not write about fear, we feel it I am sure, but few delve into how deadly cultural assumptions can be.”

Continue reading Comfort Care: Killing a Bad Cripple.

4 thoughts on “The message was loud and clear: “I can help you die …”

  1. Yes! Those who are intelligent and aware and disabled who experience the rejection of THEIR lives as SACRED and special by educated human beings, physicians, who hold the power of life or death over them, should be SCARED –or TERRIFIED.

    This is especially ugly and frightening when one begins to realize that physicians and nurses are being educated as a means to changing public policy to accept that the elderly and disabled are “bettet off dead” and especially if it protects the bottom lines of the for-profit health care system by capping treatment costs that may not be reimbursed by Medicare/Medicaid and/or the private insurers.

    Because, under our Constitution, “medical futility” has to be defined very narrowly, if it can be defined at all, and life-saving and life-extending treatments cannot be legally withheld, physicians (hospitalists) are charged with influencing patients to agree to shorten their lives and reject life-saving treatments because of fiscal considerations for the hospital.

    Deal of the day offered by hospitalists in hospitals across the USA. Trade your life in —hurry up and die — and I will give you a painfree death!

    Does it hurt even more or less? when you realize that the physician who works for the hospital is charged as part of his job discription to protect the bottom line of the hospital by encouring patients to realize the ‘futility’ of their situation as a means of protecting the bottom line of the hospital.

    I understand your fear and why you didn’t want to talk about it. Your instincts were 100% and you knew what the physician was trying to do but you knew, also, that most disabled patients would not want to believe it and would want to believe that you were overreactomg tp a rare incident –to ease their own fears.

    Thank you, Bill Peace, for telling this hard and ugly truth. I understand why it haunts you! I am haunted too by my memories of a untilateral and covert DNR that I have come to believe are epidemic in our for-profit health care system.

  2. I work in an ICU in New York. The scenario described here is the standard practice at my hospital. In fact, the palliative care doctor not only tries to talk patients into dying; she is just one member of an extensive, unofficial tag-team that includes almost every nurse who cares for the ICU patient. These workers file through the patient’s room around the clock, repeating the same, dire litanies of scary predictions in the effort to coax the patient to give up and request a DNR. If the patient is sedated or unconscious for other reasons, the nurses and doctors focus their coercive behavior on the family. It doesn’t matter if the family or the patient requests a DNR–as long as it gets requested, the patient can be moved out of the ICU and allowed to die in a cheaper room. Meanwhile, whichever nurse finally gets the family or patient to “make a decision” brags about it, and is respected by the other ICU nurses as a hero (note: if a patient makes a decision to stay alive and continue being treated, the nurses do not consider this “a decision.” As long as a patient or family keeps deciding to keep the patient alive, the nurses and doctors keep pressing them to “make a decision.”) Meanwhile, the palliative care doctor is cherished and loved by the ICU staff for her ability to sweet-talk almost any family into ordering withdrawal of treatment so the patient “can go to Heaven.” A few weeks after the palliative care doctor began her practice at my hospital, the CEO mentioned her in a memo to all of the staff, thanking her for helping to shorten the average length of time patients were in the ICU and in the hospital. “Length of Stay” is a central measure of a hospital’s potential to make or lose money. The shorter the average patient’s Length of Stay, the better it is for the budget.

  3. I should add that the nurses, respiratory therapists, and doctors don’t usually worry about whether getting patients to “make a decision” helps the hospital’s financial bottom line. They just get tired of taking care of one patient for too long in an acute care setting–tired of seeing the same old patient in the same old bed for too many weeks. It’s discouraging to treat a patient who doesn’t ever seem to get much better, and the healthcare workers gain a sense of closure and relief when such a seriously ill patient dies. They do prefer for their patients to heal, but if they don’t heal within a few weeks, they start complaining about how “this one needs to go to Heaven.” In my view, that’s God’s call, not a nurse’s. Unfortunately, it’s a frustrated caregiver finds it just as convenient for the patient to die as to wake up and walk out of the hospital. Money is only a small part of a complicated array of motives behind “coercive comfort care” and other forms of badgering patients/families for a DNR. The healthcare workers’ psychological, emotional, and religious (especially agnostic and atheistic) factors are more significant. Simple human laziness is another major player that kills ICU patients with “comfort care.” For hospital staff, the sickest patients are the hardest work. Make sure your family, doctors, and nurses all know that you intend to fight for every last minute of your life. Do not give hospitals permission to legally abandon you!

  4. Anyone with a bacolfen pump DNR IS CONTRAINDICATED because in a cardiac death state bacolfen overdose and underdose both result in cardiac arrest. That goes for anyone on oral bacolfen too. They cannot win the argument.

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