The following article is taken from a panel presentation by NDY President Diane Coleman as part of the “Disability and Ethics Across the Life Cycle” bioethics conference in Schenectady, New York, May 21, 2010
I’ve been a health care advocate for a couple decades, sometimes joining protests against government health cuts. While living in Tennessee in the early 90’s, and then Illinois until 2008, I served on the Boards of statewide grassroots health care coalitions, trying to pass universal health care bills. Personally, I’m a single-payer advocate, and I pretty much view insurance companies and for-profit health care providers about the same as many in the public now view Wall Street investment bankers. I don’t think that people should be denied health care to preserve the profit-driven status quo. But this weekend, I’ll be talking about the power dynamics between disability rights activists and mainstream bioethicists. Perhaps we’ll be debating the extent to which it’s simply the same socio-economic struggle in a different form or adds new elements of oppression.
When Stephen Drake, Not Dead Yet’s Research Analyst, and I moved to New York in 2008, I went to work at the Center for Disability Rights, whose disability activist staff and volunteers accompanied Stephen to a 2006 protest at the Alden March Bioethics Institute’s Conference on “Bioethics in a Divided Democracy.” I’d met many of these activists at protests focused on another issue, the struggle of seniors and people with disabilities to escape unwanted and unnecessary confinement in nursing facilities. The freedom we want is a civil right – the U.S. Supreme Court even said so in the Olmstead decision over a decade ago – but there are some powerful vested interests in the status quo. Anyway, after a few months in my new job, one of the people I supervise told me her story of becoming quadriplegic. I encouraged her to write it down and I’d like to share part of it with you.
My name is Terrie Lincoln and I am a 31 year old quadriplegic. I live in Rochester, New York and work as a Systems Advocate at the Regional Center for Independent Living. I have a degree in social services and a bachelor’s degree in public administration. I am currently working on my master’s in social work.
At the age of 19, I had an automobile accident. . . . I was air-lifted to a nearby hospital in West Virginia a few hours later. . . . While I was lying in the hospital bed . . ., the doctors would come in and ask my mom if she was ready to pull the plug on me. “Why would I want to do that?” she would ask? The doctors answered, “What kind of life will she have— she won’t. She won’t be able to dance, walk, work, have a social life, or be independent.”
. . . The next day when the doctor came in my dad was there with my mom. The doctor informed us that I was going to be in a veggie state for the rest of my life. … [M]y dad asked what veggie I was going to be because I hated green beans and would be mad if I was one.
The doctor said he didn’t find that funny and felt it was inappropriate. My mom said she felt he was being inappropriate by coming in every day and telling her to pull the plug on her daughter. The doctor responded that any good mother would pull the plug instead of seeing their baby suffer. . . . [T]hey were killing me slowly with the lack of care I was receiving. Within fifteen days of being there, I had no bowel movement (they were scared to roll me), aspirated, had pneumonia, and collapsed lungs . . . . I was life flighted out on the fifteenth day.
Once I arrived in Columbus, OH we felt I was on my way to recovery. I had a new team of doctors who specialized in spinal cord injuries. The relationships with the doctors started off more positive than the last set until the first time I died, which was about 3 weeks after I arrived. I was a code blue and they resuscitated me but didn’t offer any suggestions on how to inflate my lungs or help me breathe.
Over the weeks I got worse and worse. Pneumonia was causing my lungs to fill and I was constantly flat lining …. The team of doctors asked: do you want to pull the plug? They said … we could induce her into a coma and she won’t suffer.
. . . [Weeks later] I was spending hours a day off the ventilator and the doctors were still asking if I wanted to live the rest of my life with this condition. If I chose no, they would keep me off the ventilator and I would die. I could get injected with Morphine so I couldn’t feel it.
They’d work at my parents, saying things like: “Your daughter was so active before this accident and now she’s nothing. She’s just like Christopher Reeve, she will need help with everything, she won’t be able to push her own chair. She will have to use a sip and puff device.”
Then they’d work on me. Saying stuff like: “Are you sure this is something you can live with? Do you want to spend the rest of your life on a ventilator?”
These are all the things we heard every day even though my health was improving. . . .One Friday we did our daily disconnecting of the ventilator – but this time we never connected it back. I ended up staying off of the ventilator for good. . . . When I returned for my follow-up appointment a year later I made it a priority to see that team of doctors. When I rolled into the offices pushing my own power chair, without a ventilator, and healthy as can be, their jaws dropped to the floor and their eyes began to fill with tears.
Experiences like Terrie’s, pressure to forego life-sustaining treatment, are all too common in the disability community. We are painfully aware that too many physicians underestimate our quality of life and use their judgments to determine what they say and do.
In terms of Terrie’s story as it relates to bioethics, a number of issues emerged as I discussed this with Stephen: If Terrie’s parents had succumbed to the not-so-subtle pressure of the medical staff, her death might have ended up as a popular story in bioethics courses – how a medical staff resolutely succeeded in making a family face reality and to make the appropriate “end of life” decision to let their daughter die with dignity.
On the other hand, considering how Terrie’s story played out in real life, it’s a good bet her case won’t be used in any bioethics courses or appear in any bioethics texts. It would lead to too many uncomfortable questions about what gets left out of the “end of life” stories doctors tell – or the question of how many people who could have gone on to live happy lives as disabled people never made it out alive of these two institutions – as other families no doubt succumbed to the accusations that “keeping their loved one alive” was selfish and inflicting needless suffering.
Nevertheless, given the medical profession’s purported commitment to patient autonomy, people might hope that physician behavior in applying pressure to withhold or withdraw life-sustaining treatment would never progress to outright involuntary denial of life-sustaining treatment. Unfortunately, the majority of states already have statutes that explicitly authorize physicians to withhold treatments which in their judgment are inappropriate, even if this is against the expressed wishes of the individual, their surrogate decision maker and/or their advance directive.
Futile care policies have been discussed for at least two decades, under the public radar. A big part of many futile care policies is an Ethics Committee that holds meetings to persuade the family that they should agree with the doctor to withhold life-sustaining treatment. If the persuasion process is successful, the physician avoids the potential for litigation. This was the strategy suggested in a 1999 article in the Journal of the American Medical Association.
But if the doctor cannot convince the individual or surrogate to forego treatment, futile care policies provide that a doctor may overrule a patient or their authorized decision-maker in denying wanted life-sustaining treatment. Futile care policies do not generally require that the treatment be objectively, medically futile, but allow doctors to use subjective criteria such as quality of life judgments as grounds for denying treatment. These health care providers may also be financially penalized for providing too much health care (contracts call it “over-utilization”). During the decade since the 1999 AMA futility article (Council on Ethical and Judician Affairs, American Medical Association, Medical Futility in End-of-Life Care: Report of the Council on Ethical and Judicial Affairs, Volume 281(10).March 10, 1999.937-941), it has become evident that lawyers rarely take wrongful death cases involving people with significant illnesses, because damages are generally calculated based on the person’s economic value, and cause of death may be hard to prove. So there’s very little protection for consumers with expensive needs.
Back before the patient autonomy movement of the 1970’s and 1980’s, doctors made all the life and death decisions. Now, some doctors think that patients and their families have gone too far in demanding medical treatment for people who are deemed too old or have advanced chronic health impairments. Some physicians and lawyers think that health care resources need to be rationed, and that physicians know best who should receive health care. Moreover, these decisions are obscured from researchers by the fact that physicians list the cause of death as the individual’s medical conditions. These practices are occurring without the data collection needed to assess their nature, scope and impact, effectively under the public radar.
Mainstream bioethicists seem to think of yourselves as progressives, but we rarely see you work to cut unnecessary costs, like excessive marketing, administrative and executive compensation costs, before cutting lives. Rather than conquering the waste and inhumanity of a profit-driven health care system, you mostly push for new health care decisions laws to increase the authority of physicians and guardians to withdraw life-sustaining treatment without the consent of the person. The latest new push is to presume consent to organ donation.
At the same time, for seniors and people with disabilities who depend on publicly funded health care, federal and state budget cuts pose a very large threat. Many people with significant disabilities, including seniors, are being cut from Medicaid programs that provide basic help to get out of bed, use the toilet and bathe. By forcing people into nursing facilities, states are violating the civil rights of hundreds of thousands. What looks to some like a choice to die begins to look more like a coerced choice as society seems to find new ways to convey the message that we’re a burden – on our families and on the economic welfare of the country.