Diane Coleman on Withholding Medical Care at the Disability Rights Leadership Institute on Bioethics

So, the first thing I want to say is thank you for giving your valuable time to this institute The second thing is that I really feel that we need a lively opening And those of you who know me realize as I do that I’m a bit too wonky for that audience laughter So, really throughout the institute I’ll be turning to so many of you for help in a lot of ways And in this case I want to start off with a brilliant piece by the guy whose filming here, Norm Kunc So this is my idea of a very good opening for this conference and hopefully I can do the tech correctly First, find the thing Then go like that And go like that music plays

I know, isn’t that awesome? It’s just so great So people often ask how I got into this, so let me give a bit of prehistory leading up to the formation of Not Dead Yet By the way the powerpoints are going to be posted online soon after the institute so you don’t have to be worried about getting the information I was an attorney in Los Angeles in 1985 and volunteered as a member of the board of a large center for independent living The center’s executive director contacted me about attending a protest over the case of Elizabeth Bouvia Explaining that Elizabeth was a twenty-six year old woman with cerebral palsy, who had been through a miscarriage and a marriage break up and other setbacks in her personal life including the state rehabilitation agency taking back her accessible van and effectively blocking her plans to attend a masters degree program She’d gone to a local hospital asking to be allowed to starve herself while receiving comfort care and pain medication The Helmlock Society lawyer took her so called right to die case

The California Appellate Court ultimately compared Miss Bouvia not to a suicidal person needing suicide prevention but a terminally ill person in a helpless, hopeless condition But by then she didn’t go through with it – she actually had been suicidal So this case served as a wake up call to the disability community Also in the 1980s several cases went through the courts involving young men with quadriplegia on ventilators These men were stuck in their facilities against their will or feared winding up in a facility as their support system failed They wanted to be free of the facility or else pull the plug In each case the court found that their liberty rights included the liberty to die but apparently not the right to live free In only one case, that of Larry McAfee, were adept disability advocates able to intervene and get him out of the facility and then he chose to live We call these the “Give Me Liberty or Give Me Death” cases and they were another wake up call for the community While we don’t oppose the right to refuse treatment based on informed consent, we question and object to the devaluation and coercive pressures placed on these men and others So over the next few years concerns grew yet disability advocates were ignored And the idea arose that an organization that included street action tactics like ADAPT was needed On the day that ADAPT leader Bob Kafka said, “I’ve got a name for your group.” From Monty Python and The Holy Grail, Not Dead Yet began That’s eighteen years ago this Sunday, so we’re calling it our coming of age birthday And by the way, our keynote luncheon speaker has the same birthday, so awesome I had to tell, sorry! So my job today is to talk about a few issues under the topic of withholding and withdrawal of life sustaining treatment There are quite a few people in this room who know more than I do about the topics I’ll be touching on, which is personally intimidating but also exactly what we need and want so that together we can make this a very productive gathering that moves us forward For now, just let me thank you for your patience Not Dead Yet works toward ensuring that healthcare decisions are voluntary and based on informed consent and are not pressured The work on ensuring surrogate decisions are consistent with the person’s wishes and their civil rights And we oppose involuntary unilateral decisions by doctors, hospitals and other providers – also known as utility policies So first, turning to surrogate decisions to withhold or withdraw life sustaining treatment There are two kinds of surrogates that have the potential power of witholding or withdrawing life sustaining treatment A surrogate chosen by the individual or a surrogate designated under a statutory scheme or appointed by a court We think that a person chosen by the individual should have more latitude than someone chosen by law or by court, who should be clearly bound by civil rights constraints The 1990 US Supreme Court decsion in the landmark Cruzan case, ruled that a surrogate may decide to withdraw treatment, that food and water by tube is medical treatment that can be withdrawn by a surrogate and they said that state law would determine the specific rights and limitations As implemented all indications are that the rights of surrogates to remove life sustaining treatment from people with disabilities are being massively abused The Pennsylvania case of David Hockenberry is a good example

Involved a man who was aged fifty-three with an intellectual disability who resided in a facility for most of his life He got aspiration pneumonia in 2007 and was hospitalized where doctors treated him with a ventilator for several weeks His parents asked the court to allow them to refuse the ventilator and other treatments but the court denied the parents’ request Mr. Hockenberry improved and no longer needed the ventilator and returned to his living situation but his parents appealed up to the state’s supreme court so they can try again the next time he got sick The protection and advocacy agency Not Dead Yet and others filed a friend of the court brief, opposing them The Pennsylvania Supreme Court held that where life preserving treatment is at issue for an incompetent person who is not suffering from an end stage condition or permanent unconsciousness – if that person has no self selected healthcare agent the act mandates that the care must be provided Notice, by the way that distinction they make that someone is labeled permanently unconscious That’ll be relevant later Another case was recently brought to our attention by Disability Rights Wisconsin It arose in response to the death of a thirteen-year-old boy with intellectual and developmental disabilities who had pneumonia It was easily treatable by antibiotics and his long term facility was providing the antibiotics But the doctor encouraged his parents to transfer him to the University of Wisconsin Hospital so he can be taken off of antibiotics as well artificial nutrition and hydration So then the boy was transferred to hospice care where he died after being administered morphine Disability Rights Wisconsin, the designated protection and advocacy agency, filed suit against the University of Wisconsin Hospital and clinics and six physicans, including the infamous Doctor Norman Fost, to prevent them from denying life sustaining medical treatment to people with developmental disabilities Not Dead Yet is partnering with the Autistic Self Advocacy Network on an amicus brief in this case, which will be filed early next month Samantha Crane, who will be speaking with you tomorrow is writing the brief And we’re looking for national groups that would sign on with us to that amicus but it’s going to be a tight time frame, I’m hearing The disability protection and advocacy system is a tremendous resource for addressing surrogate cases And I’d like to thank the National Disabilities Rights Network and David Carlson and Nachama Wilker who are with us at the Institute – back there – for issuing their report in 2012 on Devaluing People with Disabilities: Medical Proceedures that Violate Civil Rights, for documenting the abuses and loss of life of people with disabilties at the hands of medical decision makers I’d like to next talk about what we call rush to judgement cases A good example is the case of Haleigh Poutre Haleigh was an eleven-year-old girl in Massachusetts allegedly injured by parental abuse Less than two weeks post injury the state sought to withdraw her feeding tube The abusive father went to court to keep the feeding tube – he didn’t want to be charged with murder The state’s legal papers describe her as “almost braindead.” The judge in the case ruled that she should pass away with dignity, that was in 2008, but the day after the ruling the news was released that she had clearly recovered some of her consciousness so she was transferred to rehabilitation By the way, Wikipedia says that during the father’s trial in 2008 she was shown to have recovered the ability to walk one hundred feet and eat independently

Sometimes the press refers to people who wake up from a “vegetative state”- I hate the word but that is the diagnosis – when they wake up it’s referred to as a miracle but in most cases the person woke up in the time frames laid out by the American Academy of Neurology as the appropriate waiting period before giving a prognosis of permanent unconsciousness According to the Academy a “vegetative state” can be judged to be permanent twelve months after a traumatic injury Not before! And to be permanent for non-traumatic injury, which is oxygen deprivation like a stroke or a heart attack that doesn’t get addressed immediately – that would be three months And I think we can see in so many cases that is not what’s happening They’re saying permanent a week or two into it To say Haleigh was brain dead within two weeks? No, no no It’s just so wrong but it’s happening So studies also show a high rate of misdiagnosis of permanent vegetative state And while that rate was forty-three percent misdiagnosis in a widely reported 1996 study, the commonly accepted figured by your average neurologist type group is thirty percent misdiagnosis Thirty percent misdiagnosis of PVS and yet that label is the basis of many laws in many states that allow surrogates to take away everything from you no matter what It’s a great loss of civil rights if you have that label So the problem with the mistaken or rushed diagnosis is that doctors are combining it with a recommendation to withdraw life support One 2004 article referred to this as convenient window of opportunity to stop intervention and allow the patient to die So a leading national expert on consciousness, Doctor Joseph Fins, was interviewed for a New York Times article It was mainly about drugs that were found to wake people up who were thought to be in a vegetative state You know, Ambien and stuff like that you may have heard of So he said, “Once a patient progresses to minimal consciousness we can’t predict what’s going to happen.” He’s referring to what doctors refer to as minimally conscious state, which some doctors began distinguishing from the vegetative state in the 1990s It’s awake – in and out and so on A lot of times it didn’t get noticed but it began to be defined as different So he’s saying once you start that you really don’t know He goes on to say, “It’s not uncommon for doctors to assume the worse and advise family members to withdraw care early It’s glossing over all the unknowns for the sake of a quicker, cleaner solution It’s wrong to be so uniformlly fatalistic so early on.” But it’s happening He said it’s not uncommon and we don’t know how many people with disabilities are having their lives ended in this way rather than having a chance to recover Interestingly, Doctor Fins has been involved in the organ transplant system and he reported in an American Medical Association journal article several years ago that he resigned from the board of an organ procurement organization because it was overly aggressive in approaching families in the ICU Enough so that about forty families complained in the group he was in So beginning two years ago Not Dead Yet submitted comments on proposed protocols for organ donation after cardiac or circulatory death which generally involves people on ventilators who may be removed from them

We were concerned about the transplant system’s failure to protect individuals and families from being contacted and even pressured about organ donation before they’ve made a decision that life support would be withdrawn And about the system’s failure to ensure that organs are not procured before a conscious potential donor has received appropriate psychological counseling and support to live So I can’t help but think about the media flurry around the hunter that fell from the tree I don’t know if organ donation was involved but the sense that counseling was needed was something that really went through the disability community as a big concern So after two years of letters regarding the protocol many of whom were written by you – the Organ Procurement and Transplantation Network adopted a protocol requiring that organ donation discussions must not begin before a decision to withdraw life support has been made We just think that’s really important so that people aren’t thinking well at least some good can come out of this tragedy, someone can get my organs I’ll go ahead and die And that’s really a good kind of concern, or that the family would be getting that same message It’s amazing really that we were able to succeed in that but I know one thing was they got two hundred letters from you guys because you responded to advocacy alert But the success really needs follow through We think the US Department of Health and Human Services needs to ensure that the transplant network carries out its responsibility to monitor and discipline organ procurement organizations and we think that HHS should also require support counseling for people who acquire severe disabilities It should be in their standards and guidelines Another organ donation issue is discrimination in eligibility for organ transplants I’m sure many of you heard two years ago about Amelia Rivera’s story where her mother wrote a blog about the doctor at the Children’s Hospital in Philadelphia who said that her daughter did not have a right to a transplant because she is developmentally delayed So following a national petition drive and negative publicity the hospital’s position changed and their public statement was quoted in USA Today “While we can unequivocally state that we do not disqualify transplant patients on the basis of intellectual disability this event underscores the importance of our responsibility to effectively communicate with families.” I think what it really underscores that effective disabilities rights advocacy and what, twenty thousand signatures – ASAN did an incredible job organizing on that – and I would really like to refer anyone who’s interested in these issues of eligibility for organ transplant to the Autistic Self Advocacy Network’s policy paper and toolkit on the issues So they’re easy to find if you go to their website Another health care decision making issue focuses not on decisions by individuals and their surrogates but unilateral decisions by healthcare providers Futile care is designated by state statute or medical provider policy Basically says that the doctor knows best and allows the doctor to overrule the patient or the family decision maker in favor of treatment and deny life sustaining treatment based on medical predictions – which are often unreliable – and quality of life judgments – which are often biased There are three types of futility statutes Basically One requires continued treatment by the physician until the patient can be transferred That’s Alabama, Florida, Kansas, Maryland, Massachusetts, Minnesota, New Hampshire,

New York, Ohio and Wyoming Otherwise there’s a couple states that have some different protections: Idaho and Oklahoma There are two states that require continued treatment for a limited time Virgina, fourteen days and Texas, ten days Generally the count begins after the ethics committee decides And the person – you know – get’s their – is notified Or some combination of that And then the third and most common type allows or appears to allow the position to act on futility judgements and withdraw treatment but the law is not specific about the efforts that have to first be made to transfer the case into another willing provider, if one can be found Definitely the most infamous futility statute is Texas Wildly discussed in the literature It requires a review process by an ethics committee and then allows life sustaining treatment to be withdrawn again, over the objection of the patient or their surrogate after the tenth day after the written decision of the committee The court is only authorized to extend the time if a preponderance of the evidence shows that another willing provider can be found So these policies involve passive euthanasia Involuntary, passive euthanasia There are at least two types of challenges to futility policies that disability advocates can pursue in their home states Oklahoma has legislation entitled The Nondiscrimination and Treatment Act It says that a healthcare provider shall not deny to a patient a life preserving healthcare service which is directed by the patient or a person authorized to make healthcare decisions for the patient I’m just using their language with the patient thing, I know that’s not our favorite terminology but it applies to the medical scenario and that’s what they use On the basis of a view that treats extending the life of an elderly, disabled, or terminally ill individual is of lower value than extending the life of an individual who is younger, non-disabled, or not terminally ill So they cannot do that Or on the basis of disagreement with how the patient or person authorized to make healthcare decisions values the trade off between extending the life of the patient or the risk of disability So, we’re interested in trying something like this in Virginia, the state that has the fourteen day time limit I don’t know if anyone here is from Virginia but I know we’re close at hand so please approach me if you want to work on this The second strategy is from our colleagues in Texas Not Dead Yet, equals Texas ADAPT, by the way So great Which is a proposal for ethics accountability which would require ethics committee composition be at least one quarter not hospital staff To include members of both disability and aging advocacy organizations and require an independent oversight committee to adjudicate when individuals or families are in conflict with the decision of the ethics committee And Bob had a slogan – Bob Kafka – he named our group, remember – Not Dead Yet – Okay, his idea – end the un-ethics committees That’s his campaign Now this type of effort can be undertaken in every state It’s kind of like a nothing about us without us campaign And there’s a handout about this that was tucked inside your program this morning So, I’d like to encourage advocates who want to work on it to just email me after the institute We’re going to see what we can do Now, I’ve been going kind of fast and I should check the time limit Yeah, I was thinking maybe I should stop

and we can do some questions I have one more topic and there’s a video I want to show but I think the total of that is going to be twenty-five minutes We could even do Q&A, take our break, and come back and put that in Or I can do the video before the break, depending on how it goes because they’re giving us our food at ten thirty? Yeah, okay It’s nothing special I’m sure It might just be coffee, stuff like that Cocoa, and such Okay – so, yeah Q&A, let’s open it up for that Or comments or whatever