Disability Perspectives on Public Policy In Advance Care Planning

Presentation made by Diane Coleman, JD, CEO, Not Dead Yet to the 3rd International Society of Advance Care Planning and End of Life care Conference, May 31, 2012

View/download PDF of PowerPoint Presentation (1.8 MB)

I’d like to begin by presenting a case study. It’s a true story, as told by a woman I supervised for 3 years beginning in 2008 when she worked as a Systems Advocate for the Center for Disability Rights.

Terrie’s story

Terrie wrote:

“At the age of 19, I had an automobile accident. . . . 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 [them] 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.”

Terrie’s parents argued with the doctor, who “responded that any good mother would pull the plug instead of seeing their baby suffer. . . .”

Terrie had a rough time medically for about five months, but eventually, she said “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, . . ..’

Then they’d work on me. . . ‘Are you sure this is something you can live with? Do you want to spend the rest of your life on a ventilator?'”

When she returned a year later, with a power chair like mine and no ventilator, the doctors’ “jaws dropped to the floor and their eyes began to fill with tears.” Their reaction suggests that the doctors always meant well and thought they had been doing the right thing.

Here’s a recent picture of Terrie & her daughter Khloe.


The common thread running through Terrie’s story and too many others we hear about in the disability community is that our lives with disability are seen as less worth living, so much less that health care providers too often think death is the correct course. They press this viewpoint on us, our families and sometimes even overrule us when we disagree.

A Disability Perspective: The Quest for Balance

I call the Disability Perspective a Quest for Balance because advance care planning has developed under the false premise that the primary or only problem is overtreatment of dying people. A balanced approach would also address the problem of undertreatment of people who may or may not be terminally ill. I want to emphasize that while the disability community may be most sensitive to this problem, it affects everyone who may find themselves on the patient end of the health care system.

How can we help ensure that health care decisions reflect the person’s wishes?

I’d like to highlight a few specific items of evidence that our concerns are valid.

One comes from a recent study in the Journal of Emergency Medicine:
Researchers from the University of Pittsburgh Medical Center surveyed responses from more than 700 physicians in 34 states and

  1. Found that over 50% of physicians misinterpreted a living will as having a “do not resuscitate” (DNR) order when it did not.
  2. About the same percentage over-interpreted DNR orders as meaning no treatment except “comfort care” or “end-of-life” care.

This is bound to make anyone nervous about having a living will. For advance care planning to achieve its stated goal, steps must be taken to address so many doctors’ mistaken assumptions.

Futility Policies v. Advance Directives

Another way that advance directives are undermined results from futile care policies, which can be state statutes or medical provider policies, allowing the doctor to overrule the patient or family decision, or an advance directive, and deny life-sustaining treatment based on whatever medical predictions and quality of life judgments that they may feel are consistent with community standards.

Types of Futility Statues

There are 3 types of futility statutes in the U.S., with about 10 states requiring continued treatment pending transfer to another willing provider, two requiring continued treatment but only for a limited time (such as 10 days in Texas), and others allowing doctors to withdraw treatment, but requiring some effort to transfer the patient first.

The Texas law requires an ethics committee consultation and then after 10 days provides a legal “safe harbor” for both physicians and hospitals who withdraw treatment. So far, efforts to make the Texas law more patient friendly have failed.

Futility policies have become enough of a concern that Oklahoma has proposed a law entitled the “Nondiscrimination in Treatment Act” (SB 1695). If passed, it would prohibit denying life-preserving health care that the person or their surrogate wants because the provider devalues the life of an elderly, disabled, or terminally ill person or because the provider disagrees with the patient or surrogate about the tradeoff between extending the patient’s life and the risk of disability.

Are advance directives always to refuse treatment, never to request it?

There’s another disability concern that actually favors the type of advance directive in which one designates someone they trust to make decisions when they can’t.

Without a chosen proxy, one is subject to statutory schemes which establish priorities for who will be one’s surrogate. Typically, the spouse is first, adult child second, parents third. Unfortunately for some seniors, research shows that the spouse and adult child are the most common perpetrators of elder abuse. It sometimes seems that some hospitals are more concerned about having a surrogate who agrees with the doctor rather than trying to ensure that the surrogate is not an abuser or someone who would intentionally benefit from the patient’s death.

And what about caregivers who simply have a conflict of interest from being tired? A number of studies have shown that care givers rate the quality of life of a patient with mild or moderate dementia as lower than the patients rated their own quality of life. One study sought to find out why, and learned that the care givers felt burdened and projected their feelings about their own poor quality of life onto the patient. 

Sadly, this is no surprise to a lot of us in the disability community. This is one of many reasons why the number one issue on the overall disability policy agenda is home care. Despite a federal law and a US Supreme Court decision that we have a civil right to choose home care over a nursing facility, too many hospitals still deny people that choice or know so little about the home care options that exist that they leave families to fend for themselves. I hope that everyone here will work to ensure that hospitals stop cooperating with this injustice.

Rush to Judgment

The final disability community concern that I’d like to highlight this morning is exemplified by a couple of cases.

One case arose in Massachusetts when 11-year-old Haleigh Poutre was injured and unconscious from parental abuse. In state custody, less than two weeks post-injury the state went to court seeking to remove her feeding tube, describing her as virtually “brain dead.” Her abusive father fought to keep her alive because he didn’t want to face murder charges. The judge in the case ruled that Haleigh should “pass away with dignity”, but by then she had clearly recovered some level of consciousness and was transferred to rehabilitation.

Another case that hit the papers occurred in Arizona in 2007, when a car accident left Jesse Ramirez in a coma. Nine days after the accident, his wife wanted to remove a feeding tube and fluids and his parents had to go to court to stop her. Three weeks after the accident, he woke up.

Cases like this are the subject of an article from the Journal of Clinical Ethics (one co-author is Chicago’s own Joel Frader), which says that “Reliable information about the character of an injured person’s future may be especially hard to find at those times during the course of treatment when there may be a ‘convenient’ window of opportunity to stop interventions and allow the patient to die.”

Looking at the neurology literature, it seems pretty well established that doctors should not predict someone will never wake up until 3 months after an anoxic brain injury and 12 months after a traumatic brain injury. So why do we hear of early pronouncements like those I just mentioned?

This past December I read an answer to that question from perhaps the leading U.S. authority on consciousness, Dr. Joseph Fins, who was interviewed extensively for a New York Times Magazine article. The reporter turned to another doctor, Dr. Soojin Park, who explained:

“Early on, when families have the option to pull the plug, it’s almost impossible to tell what the long-term prognosis will be. And then later, when we have the certainty — that this is as good as it’s going to get — that option is gone. Because by then, the patient is breathing on their own. There’s no more plug to pull.”
“At that point, families who want to end a loved one’s suffering must either have the feeding tube removed, or agree to let the next bacterial infection win out, unhindered by antibiotics. Many families find choosing these deaths much more difficult than turning off a ventilator. …”

Dr. Fins then said that this scenario is “not uncommon.” “It’s glossing over all the unknowns for the sake of a quicker, cleaner solution,” he says. “It’s wrong to be so uniformly fatalistic so early on, especially with all the data emerging about the prospects for later-stage recovery.”

Let me restate this: It is not uncommon for people with brain injuries, some of whom will recover, to have their lives ended through withdrawing ventilators before their prognosis is known. This is in order to ensure that the lives of others who will not recover (to whatever is deemed an “acceptable” extent) are also ended.

Frankly, I’m amazed that Drs. Park and Fins were so open about this practice. There seems to be a very high level of certainty that there will be no consequences.

So I find myself asking, in today’s health care system, would Terrie have survived?


Last week, something new and important happened. The National Disability Rights Network issued a groundbreaking report. I should explain who they are. Hopefully, many of you heard about the expose of the Willowbrook facility in the early 1970’s which made Geraldo Rivera famous by revealing the horrible abuse and neglect that disabled people were subjected to there. One response to that was the creation of federally funded protection and advocacy agencies in all 50 states, charged to protect the civil rights of people with disabilities. These should not be confused with adult protective services. The National Disability Rights Network is the national association of the protection and advocacy agencies. On May 24, NDRN issued a report condemning decisions to withhold medical treatment including hydration and nutrition from individuals with disabilities without a terminal condition or permanent unconsciousness as a denial of the basic constitutional rights of individuals with disabilities.

The report states that reliance on ethics committees and consultations are insufficient protections of a patient’s legal rights and that hospitals and other providers must “establish and implement due process protections to ensure the civil rights of a person with a disability are protected . . ..”

I’ve communicated with protection and advocacy attorneys in several states who had to go to court to try to save a disabled person’s life from a decision made by a surrogate or unilaterally by a doctor or hospital. Against the odds and because of their intervention, lives have been saved in Illinois, Connecticut, Kansas, Montana, Pennsylvania. That’s just from my limited knowledge. What the report tells me is that the problem, the imbalance in the health care decisions process, is so big that a lot of federally funded lawyers had to speak out in the strongest terms against it.

If the disability community had been at the table as health care decisions policies were developed over the last 25 years, we would have pushed for recognition that concerns about overtreatment must be balanced with protections against undertreatment. If we can talk about that, we can start a productive conversation.

View/download PDF of PowerPoint Presentation (1.8 MB)