Guest Blog by W. Carol Cleigh: Not Paying Attention

Anyone who thinks that the so called ‘right-to-die’ isn’t a loaded gun aimed right at the heads of disabled people simply isn’t paying attention. A cursory perusal on-line of such organizations as Compassion & Choices, Ergo and Final Exit Network yield a plethora of examples.

Compassion & Choices has a long-term disabled man demanding the ‘right to die’ on their home page.  His essay states that he is ”a 38-year-old disabled man with a terminal diagnosis of Duchenne Muscular Dystrophy.” From the photograph accompanying the story, he seems to have a power wheelchair and a ventilator. I find it interesting that he calls MD “a terminal diagnosis,” as I have several friends with MD, none of whom consider it terminal.  It is, in fact, a long-term disabling condition caused by a genetic anomaly.

In his article “Farewell to Hemlock: Killed by its name,” on the Ergo site, Derek Humphry says that Hemlock was, “fighting for voluntary euthanasia and physician-assisted suicide to be made legal for terminally and hopelessly ill adults.” Disability activists know that ‘hopelessly ill’ means us.

The other major ‘right to die’ organization in the U.S., Final Exit Network, has the following as the first bullet point in their mission statement:

To work toward obtaining the basic human right of competent adults to choose to end their lives on their own terms when they suffer from irreversible physical illness, intractable pain, or a constellation of chronic, progressive physical disabilities.

Which makes it abundantly clear that they mean us.

Thus it is apparent that these major ‘right-to-die’ organizations are really ‘better-dead-than-disabled’ organizations and that the people that they want the right to get rid of certainly include people with long-term physical disabilities – us.

I have to confess at this point that I, too, had not been paying attention to this for some time.  I’ve been living in my rural paradise and ignoring, to some extent at least, the fact that these organizations have all come out to blatantly target disabled people.  When I was more directly involved in the Jail Jack campaign and other Not Dead Yet activities, the ‘better dead than disabled’ crowd were screening this agenda from the public.  Back then they wanted everyone to believe that it was only for those that were imminently dying and we were a lunatic fringe to feel threatened.  I remember the furor when Faye Girsh, then President of Hemlock Society, came out with a press release stating that nonvoluntary euthanasia for the mentally incompetent and elderly was part of their agenda.  Rather than officially retract the statement, she passed it off (and the national press let her) as ‘unofficial.’  I’m still scratching my head, trying to figure out how a press release on the organization’s letterhead can be ‘unofficial.’ Including non-terminal people with disabilities was controversial then, but my research shows that including us is now accepted within the ‘right-to-die’ lobby. This makes it all the more sinister that they have been changing the law in states like Washington, Vermont and New Mexico and it makes me even more thankful to the dedicated activists from Not Dead Yet and sister organizations that prevented legalization in Massachusetts, Québec and California.

I’ve come back to active status in Not Dead Yet through the issue intruding on my otherwise quiet life. First early last year, a friend told me about another friend of hers who was being systematically starved to death in a nursing home despite being willing and able to feed herself.  Apparently a relative that lives far from here had her put in the nursing home following a heart attack to ‘recover,’ then ordered them not to feed her.  Despite the fact that she’d never been declared incompetent and made her wishes known loudly and often, the nursing home was following the relative’s instructions.  I started preparing for a direct action protest, but also advised my friend that she could and should just get her friend out of there.  “Just take her home,” I advised and if the relative or anyone else showed up, let me know and I’d be there with media.  Her friend lived at home for several more months and eventually died quietly in her own bed.

A second wake-up call occurred when my husband (who is also a wheelchair user) was in a local hospital for a GI issue and the doctor put a DNR (do not resuscitate) order on him without our knowledge or consent! We found out about it when the anesthesiologist for a procedure told us they would be suspending it for the duration of the procedure.  What?  I was livid!  By the time we got back up to the floor following the procedure, the hospital ombudsman had found the doctor and she and I talked.  She claimed that it was a clerical error and that they would not have followed it had he been in crisis because an armband is supposed to accompany the order and he did not have one.  I informed the hospital that I would forgo suing them (for now) only if they reviewed the systems that allowed such a ‘clerical’ error to occur and put in safeguards against it happening again.  I’m still not sure I believe the ‘clerical error’ story, but medical facilities are limited and I’d not like for my sweetheart to be denied services so I’m letting it pass.

The final straw was a Facebook conversation that I had yesterday with an apparently otherwise savvy disabled woman.  She didn’t know what NDY is when I mentioned it, and demanded that I defend the ‘better dead than disabled’ characterization of the ‘right to die’ movement and accused me of ‘beating a drum’ and using her post to do so. However, my research on the ‘better dead than disabled’ movement today has more than justified my statements in that conversation and I definitely stand by them.  I, for one, intend to pay attention, starting now.  I invite all of my sisters and brothers in the disability rights movement to join me.  It’s no exaggeration to say we’re in the fight of our lives. – W. Carol Cleigh



9 thoughts on “Guest Blog by W. Carol Cleigh: Not Paying Attention

  1. Thank you! W. Carol Cleigh! You got it right! But this BIG GUN is also aimed at the elderly because it is the elderly and the disabled on Medicare/Medicaid who are targeted for budget constraints and savings that will in turn preserve the profits of our for-profit health care system. Medicare patients are “product” for profit of the Insurance Companies, the physicians, the Hospitals, the Pharmaceutical Companies, and the Medical Equipment Suppliers.

    The Medicare program was intended to be a social program for the elderly and the younger disabled that would be supported by Medicare Taxes and the Social Security Program —–not a Big Purse that could be invaded to produce record profits for the private for-profit health care industry. .

    These for-profit entities have robbed Medicare blind and produced huge profits for the health care industry, and it is they who write Medicare/Social Security Law, etc.. and who will hasten the death of the elderly and disabled, as necessary, when Big Insurance, in their best interests, influences Medicare NOT to reimburse or to reduce reimbursements for non beneficial over treatment, mistakes, errors, the complications, thereof, and exceeding Diagnosis Related Group Caps. .

    I have known that there is age discrimination against the elderly for many years. My Mom lived to 104-l/2 with my husband and me, and we were three old people in residence —–all on Medicare.—-for many years. When my Mom was 99 she broke her hip on the way to play bridge at the Community Center, when she tripped on the stairs. We, of course, called Emergency who took her into our local “Christian” hospital who turned out to be “Christian” in name only. .

    My Mom was in excellent health! She had no chronic disease or illness. Her vital signs were normal and yet they didn’t treat the broken hip as any kind of an emergency. She lay prone and immobilized in the bed on morphine for over 30 hours and became weary and tired and started to run temperature and finally, they took her down to Surgery —even though she had started to run a temperature. I asked the Nurse in the Surgery who was taking history to take her temperature and she did. It was elevated and I asked her to record it in my Mom’s chart. She said that the chart was left upstairs but that she had sent for it and would record that my Mom was running temperature.

    My Mom survived the hip surgery but they had to put her into ICU because she bled so much and was running temperature, and I had complained about the delay and the temperature. It was touch and go, but she was strong and dismissed out of ICU the next day. I wondered WHY the hospital waited so long and put her at risk. The Recovery Room Nurse who had come up to the room to bring my Mom down to surgery (because it was evening and staff was low) did indicate to me, when I complained of the long wait for the hip surgery, that old people were a problem for the hospitals when they died in ICUs, often after weeks of hospital treatment, and Medicare and hospital policies were changing. She agreed that the delay had put my Mom at risk but that she would take good care of her after she came into Recovery after the surgery and to make sure that the surgical nurse took my Mom’s temperature before the hip surgery and recorded it. in my Mom’s chart. .

    Later, after my Mom was out of ICU in the hospital room, I complained to the Hospital about the long wait and the fact that they had endangered my Mom because she was immobilized for so long in a prone position and this caused the temperature. Two administrators then told me that she hadn’t run temperature and I responded that this was a “lie” and perhaps we should ask the nurses who I am sure would not lie about this. Then! they sent a hospital physician into see us and we were busy trying to find a skilled nursing home for Mom to go to for rehabilitation..

    When we arrived at the Nursing Home, I could see in the first day or so that they didn’t plan to do much for my Mom. The Nursing Home physician took her off of all of her medications and I complained and said he had no right to do this and I wanted her back on her medications. Fortunately, this Nursing Home still had in-house rehabilitation and I told them that my Mom should be worked hard and that she was strong and that as soon as she could hold up her weight and transfer into a wheel chair or a chair and try to use a walker, she could come home.——-and she did! My Mom played good bridge for two more years. I had a bridge party for her at 101 ——-The last year of her life was hard for her and hard for us to see go down hill —-at 104-l/2 she had a light stroke and I agreed that the hospital could put a DNR in her hospital chart. I didn’t understand that the DNR meant that the Hospital would do NOTHING for her because there would be no reimbursement —–not admit her to Hospice —–and then send her into a Nursing Home where her Advantage Medicare Policy (Humana) would refuse reimbursement for her care —–until I complained to my US representative and to Humana, etc.. The Nursing Home who wanted $4300? up front to accept her also put pressure on Humana to pay for some of the assessment done by their Nursing Home Rehab and Nursing Staff. The Nursing Home reported the Hospital to the State for breaking my Mom’s humorous ——

    My late husband and I were the victim of a unilateral covert DNR that I believe was intended to hasten his death to hide an error and to cap costs of further treatment that would not be reimbursed.

    I have blogged for the past few years trying to expose the misuse of the DNR Code Status to hasten death of elderly/disabled Medicare/Medicaid patients to cap unreimbursed costs even as the withheld life-saving and life-extending treatments are not medically futile.

    This is not a political thing. Both parties are complicit in this targeting of the elderly and the Administrative Law. They won’t tell on each other. It has nothing to do with Obama Care because it was under-the-radar public policy BEFORE Obama Care became law.

    I am 86 and not dead yet and will continue to try to expose this involuntary passive euthanasia of the elderly and the disabled until I am dead. Please Google “Unilateral DNR Code Status Hastening Death of Elderly/Disabled Medicare Patients” for more comments. The involuntary passive euthanasia of the elderly/disabled is epidemic and undiscovered because, of course, there are no procedural protections that guard against unilateral DNRs that, as you indicated, are defended as “clerical errors” or merely “ethics violations.”

    Carol .


    1. Dear Carol Eblen,
      Thank you. (One jarring note: on language: an ouch: “robbing…blind” is ableist language. It was very popular in the general population and I didn’t think about it until Marj Schneider,
      publisher of “Womyn’s Braille Press”, which was from Minn.MN until the early 1990s, wrote
      how ableist it is and how it keeps people who are blind stereotyped as “stupid” and other

      Your story about your mother was really exciting and I’m sorry for the fight you had to do and so glad you could do it and knew to do it. Your family has good genes.
      The story about your husband is chilling,too. My mother lived until 93 and was in pretty
      good health also. It was odd, in a way, that my mother was more mobile than I, 26 years
      younger, her daughter. My mother did not take seriously all my stories about disability and how we are “dissed” in the medical workers world until she started getting “dissed” as an old woman in her 80s by the medical workers: “you’re old, why do you expect (fill in a medical
      symptom) to be treated? Just go live with it?” She then told me that she finally understood
      what it was like to be disabled. She used a cane and I use a wheelchair to go out, in the rare times I can leave home (due to CFS/ME and allergic asthma).

      I have a lovely mental picture of you, your husband and mother living together as old
      folks. It points up something I noticed some years ago, told my mother, who laughed,
      “Old is a long time in the U.S.A. as we are both senior citizens at the same time”. I’m
      nearing my 18 1/2 Leap Year Birthday (at 74). I salute women like Carol, both Carols in fact.

  2. W. Carol Cleigh,
    Wow. The piece is wonderful. I’ll post my comment, then read the other one above me, before I forget what I want to say.

    Perhaps the scariest thing I have read in a long long time, is the story in the blog piece about the friend being starved in the nursing home at the request of her family. Every story about a person who is disabled, particularly severely disabled people, makes me think,
    “This could be about me.”. The other scarey piece is the person who is disabled, of the
    facebook page, who agreed with the notion, “better dead than disabled” and “dissed”
    W. Carol for her views. It’s lonely for us, and less so when we are connected as can
    to NotDeadYet.

  3. Thanks, Carol Eblen. There Iis a lot of ideology out there that old, ill, and/or disabled people are too expensive to keep alive. Reminds me of a math problem I heard about. … best of luck to you in your quest.

    1. W. Carol Cleigh! Thanks for your response to me.

      In reading your comments again, I see that you thought you would have the right to sue the hospital for the covert/unilateral DNR but, of course, my research has indicated that there is NO private right of action for the unilateral DNR that is discovered before or after it is implemented even though current state and federal law imply that a unilateral covert DNR is a criminal offense or at least a tort when medical futility is not invoked by the hospital under some due-process procedure approved in state law.

      The courts have not YET granted permission to physicians and hospitals to hasten death of elderly/disabled and any patients who have suffered adverse events for fiscal expediency, have they?

      If you will read the paper of Thaddeus Mason Pope, the foremost historian and expert on medical futility and the law, written in 2012, entitled “Involuntary Passive Euthanasia in the US Courts” in a Google Search, you will understand that involuntary passive euthanasia of the elderly/disabled is already a brutal reality for the elderly/disabled on Medicare/Medicaid insurance.

      Professor Pope indicates that physicians appear to prefer to ask for forgiveness for the unilateral DNR AFTER is it discovered and not for the patient’s permission BEFORE the DNR is placed in the hospital charts of the patient. . Isn’t it obvious that this is because physicians/hospitals KNOW that most often the unilateral DNR isn’t even discovered by the patient or the patient’s legal surrogate and when it is discovered, there will be no serious consequences for either the physician or the hospital? The in-hospital ethics committee with sanction the incident and has a serious conflict of interest when the unilateral DNR capped the cost of further hospital treatment that would not be reimbursed under existing Medicare/Medicaid reimbursement protocols. .

      Of course, there has been no protection (or notification) of Medicare/Medicaid patients from adverse events or “Never Events” since the National Quality Forum and the Leapfrog Group published a list of certain events that they believed should never occur “when a patient is hospitalized and questioned why federal and state governments –through Medicare and Medicaid — would even reimburse a hospital that permitted these “preventable events to occur.” This was in 2002 and in 2006 there were 28 adverse events that are not reimbursed by Medicare/Medicaid to the hospitals/physicians. In 2013, who knows how many adverse events are not reimbursed. The DRG Caps and the POA criteria and the non beneficial over treatment that is defined by Medicare/private insurance and not reimbursed are also “adverse” events for Medicare/Medicaid patients when their deaths are hastened for fiscal expediency with unilateral covert/overt DNR code status that is swept under the radar of public scrutiny.

      The bioethicists, since the 1991 PSDA, have created under- the- radar public policy wherein the covert/overt(default) DNR code status is not treated either as a crime or a tort and is merely a “clerical error” or an “ethics lapse” that is looked at by the in-hospital ethics committees. These in-hospital ethics committees have a serious conflict of interest when hospitals are routinely NOT reimbursed for non beneficial over treatment of elderly/disabled Medicare/Medicaid patients, mistakes, errors, exceeding Diagnosis Related Group Caps, and the complications thereof.

      I understand perfectly how you felt that it would not be in your best interests to further pursue the matter of the unilateral DNR while you were seeking the best possible treatment for your “sweetheart” in that hospital. A Nurse in the Hospital that placed a unilateral DNR in my husband’s chart at the request of the physician cried in remorse when I asked her WHY she had done this when she knew that this wasn’t my husband’s request! Another nurse, with whom I had a friendly relationship, I thought, got into my face about the unilateral DNR and when I asked her to leave the room, she responded “you know, we don’t always get paid for this, and if I leave the room, I won’t be able to take care of Tom” which I interpreted as a “threat.” The Chaplain made her ask my forgiveness and I did forgive her although I still felt threatened. Later, after my research, I understood the comment about “not being paid.” Of course, hospitals who are not paid for treatment will look to protecting their bottom lines with unilateral DNRs that are not punished under existing under-the-radar public policy and the cooperation of all three branches of government who must agree that these targeted groups are “better off dead.”

      My personal hard and painful experience with the unilateral DNR has been reported to the Attorney General of Missouri by way of the Counsel of the Kansas City Missouri Police Department and the AG has ignored my official complaints and my follow up phone call a few months ago and has made NO response of any kind to me for over a year.

      I can’t go to my elected representatives because a unilateral DNR is already against the law in Missouri and action by the AG is my only recourse/remedy but a remedy that the AG may consider not to be in the best interests of his office? I voted for this Attorney General of Missouri and I believe my late husband voted for him as well.

      The danger to the elderly, the chronically disabled, and to the poor should not be under estimated and something needs to be done to stop the under-the-radar involuntary euthanasia of these groups to achieve fiscal expediency and protection of the profit margins of the for-profit partners of Medicare/Medicaid. . .

  4. It isn’t just the disabled, it is the chronically ill or infants with any medical condition. I have a son, who is now 12. He was born without kidney function quite early. The medical establishment did not want to treat him because they felt he would be a burden both financially and emotionally to the family and everyone at large. At the time, they went through with treatment only because we appeared to have good insurance that just paid the bills without questioning them and we were well educated and appeared to have a solid family backup. We had a number of different people parade through our room trying to convince us to sign the DNR. Now he is 12. He skateboards and does normal boy things. He was transplanted twice and is not going to be the most academically gifted person but he certainly will be able to support himself. But we were almost not given that option because the establishment thought he would be a “vegetable”. I feel very sorry for children born with this condition now.

  5. Thank you Carol Cleigh,
    My mom had a dnr and she was elderly. She did not realize that the hospital staff would use this dnr to their advantage to take her life with.How can hospital staff who are supposed to be there to help people be such cruel monsters. It was devastating how she was treated. I truly believe that she was euthanized/murdered, she also was a donor maybe that is why they wanted to kill her. They definitely took advantage of her age. She was severely discriminated against, it was so severe that her life was taken because of it. I know there is good medical staff somewhere or at least there used to be. I would like to think that there still are hospital staff who really do care about how their patients are treated.From what I have read not all medical staff are this cruel but just beware of the evil medical staff out there. I would like to see all euthanasia ban as well as dnrs and any medical staff who are caught trying to euthanize (commit murder) should be severely punished. All Americans deserve equal rights.

    1. I’m so sorry this happened to your mom. She and you deserved better. Unfortunately this is becoming far more the norm than the exception and old, ill, disabled people are not getting compassion any more. The better-dead-than-disabled people have changed health care. It’s up to us to take it back. Please join us.

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