Guest Blog: Susan Dooha on “Lessons Not Learned” in NYC Emergency Shelters for PWDs

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Intro:  Over this last weekend, many people in the disability community were watching the progress of Hurricane Irene and hoping that – finally – disabled people were being properly taken into account in emergency plans.  Judging from the reports from Susan Dooha, Executive Director of the Center for Independence of the Disabled, New York (CIDNY), it’s lucky for disabled people in NYC that the worst-case scenarios didn’t play out.  Mostly, NDY focuses on issues such as euthanasia, assisted suicide, futile care cases and other direct attacks on the lives of disabled people.  But as we saw from the people abandoned to die in a nursing home and killed in a hospital during Hurricane Katrina, disasters can be very deadly for disabled people of all ages, through abandonment and worse.

Rather than describe those reports, we asked Ms. Dooha to share her experiences inspecting shelters in NYC and what she found:

Since 2001, our New York City disability rights agency has been working with OEM (Office of Emergency Management), FEMA, VOAD (National Voluntary Organizations Active in Disaster) and other organizations on emergency preparedness and disaster response. In 2001, we published a monograph “Lessons Learned” about the experiences of people with disabilities on September 11th. Among the issues we raised at that time were a lack of preparedness to include people with disabilities. Inaccessible shelters and transportation issues, etc.

In the intervening years, we have tried to work with these entities to improve their preparedness. We have provided training, consulted on strategy–suggesting approaches, have attended endless meetings. We succeeded in getting them to include “actual” people with disabilities in their preparedness drills (or at least a couple of them) and continually raised unresolved issues.

In preparation for today, we received assurances that the shelters would be accessible–entries, cots, bathrooms–unlike 9/11. On the strength of this information, we contacted people with disabilities in Zone A areas and advised them of the nearest shelter and encouraged their cooperation in evacuation efforts.

Today, to see for myself that they were safe and that we had been properly counseled, I went to 6 shelters in Manhattan, Brooklyn and Queens serving people in Red Hook, Fort Green, Long Island City and Lower Manhattan. I found: dangerous ramps leading to locked doors; food up flights of stairs that people with disabilities would not be able to climb; inaccessible bathrooms; cots that would be unusable by people using wheelchairs; lack of volunteers trained to deal with these issues; reliance on elevators (where they existed) that would go out in the event of a power outage; accessibility signage leading to locked doors; reliance on inaccessible transportation (school buses) etc. I focused on these areas because they include many people living on fixed incomes who would not have the wherewithal to evacuate on their own, don’t have family or friends to help–or with accessible apartments to shelter them, and who couldn’t afford to evacuate.

I have been contacted by someone who says that her friend went to a shelter and was turned away because she was in a chair. I will be pursuing her experience.

I applaud the excellent work of volunteers in the shelters–but am very deeply disturbed by the continued recalcitrance of the City and Federal government when it comes to emergency preparedness and disaster response. I think that the City and State had a wake up call on violations of federal civil rights with 9/11 and again with Katrina.  I think that they hit the snooze button.

I think they need another wake up call.  –Susan Dooha

NJ Governor Vetoes POLST Bill, Suggests Revisions

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Much of the state level legislative activity concerning POLST (Physician Orders for Life-Sustaining Treatment) has been carried out under the general public’s radar. But when Governor Chris Christie vetoed the New Jersey POLST bill yesterday, it hit the news feed.

According to NEWJERSEYNEWSROOM.COM and the Governor’s veto message –

While noting the prospective benefits in guiding end of life patient care for New Jerseyans by utilizing POLST forms, Christie cited concerns with the provisions of the bill that would effectively allow a patient’s wishes to be overridden by the patient’s physician or healthcare representative without the patient’s prior consent, and that would mandate an alternative dispute resolution as a prerequisite to a patient’s or his or her representative’s right to go to court to protect a patient’s wishes. Christie recommended changes to further protect a patient’s health care wishes.



Sounds good, but I’ve been pretty concerned about Governor Christie’s Medicaid cuts, so I had to look at the details.

The veto message included specific guidance on how the POLST bill could be amended to correct its defects. The original bill requires the individual’s or healthcare representative’s signature (Section 6.b.(2)), along with the physician’s or advanced practice nurse’s (APN’s), so that’s good.

But then it states that the physician or nurse can change the POLST form “after conducting an evaluation of the patient and, to the maximum extent practicable, acting in consultation with the patient or the patient’s representative . . ..” (Section 7.a.) Weasel words. Here is Christie’s edited version:

If the goals of care of a patient with a completed POLST form change, the patient’s attending physician or APN may, after conducting an evaluation of the patient and after obtaining informed consent from , to the maximum extent practicable, acting in consultation with the patient or, if the patient has lost decision-making capacity, the patient’s representative in accordance with subsection d. of this section, issue a new order that modifies or supersedes the completed POLST form . . . .



Weasel words deleted.

The section we just considered refers us next to 7.d. which, in the original bill, gave the healthcare representative virtually unfettered discretion to change the POLST form at any time if the individual lost decision-making capacity. Christie’s revisions to section 7.d. begin as follows:

If a The POLST form shall provide the patient with the choice to authorize the patient’s representative with the ability to revoke or modify the patient’s POLST if the patient who has a completed POLST form has lost loses decision-making capacity.

This and further revisions of section 7.d. provide that the representative’s power to revoke or modify the POLST form is determined by the individual.

Finally, the original bill requires disagreements between the individual, their representative and the physician or nurse to be submitted for resolution through the ethics committee or other process of the health care institution before being taken to the courts.

8. a. In the event of a disagreement among the patient, the patient’s representative, and the patient’s attending physician or APN concerning the patient’s decision-making capacity or the appropriate interpretation and application of the terms of a completed POLST form to the patient’s course of treatment, the parties: (1) shall seek to resolve the disagreement by means of procedures and practices established by the health care institution, including, but not limited to, consultation with an institutional ethics committee, or with a person designated by the health care institution for this purpose; and (2) upon a failure to resolve the disagreement in the manner set forth in paragraph (1) of this subsection, may seek resolution by a court of competent jurisdiction.



Such disagreements might involve, for example, a health care provider’s futile care judgment, so speedy access to the courts can be a matter of life and death. Christie’s revisions give the parties the discretion to use either the institution’s procedure or the courts.

Since legislative intent can be difficult to synchronize with legislative drafting, one could give the original drafters the benefit of the doubt. The bill’s primary sponsors (insert S2197 into Bill Search link, then click on bill no. for these details) included at least one physician, Herb Conaway, Jr., and one nurse, Nancy Munoz, as well as a lawyer or two. Maybe they didn’t intend to make it easier for a healthcare provider or healthcare representative (surrogate) to overrule an individual. Maybe they didn’t intend to set up an alternative dispute resolution procedure that could prevent someone from getting to court in time to save a life.

The original bill was adopted on a 37/0 vote in the NJ Senate and 60/6 in the Assembly (not counting abstentions and non-voting) (insert S2197 into Bill Search link, then click on bill no. for these details). We’ll see whether the bill language is revised to add protections before it next comes up for a vote. – Diane Coleman

Not Getting on the POLST Bandwagon

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I just learned that the Illinois legislature passed a bill authorizing Physician Orders on Life-Sustaining Treatment (POLST) (ILH 3134) which was signed by the Governor last week. We haven’t addressed POLST on the NDY blog yet, but it’s a primary focus of legislative activism on the part of the so-called “end-of-life” coalitions that formed during the height of 1990’s mega funding through Last Acts.

The argument for developing POLST forms is that advance directives can be long and complicated, specifying various health conditions and treatment options, potentially requiring both a doctor and attorney to determine how they would apply in a given real life situation. Perhaps more significantly, research continues to show that most people don’t have advance directives. So the argument goes, emergency medical personnel and most other health care providers can’t process the advance directives if a medical crisis or decision point arises, so they resuscitate or otherwise aggressively treat someone who didn’t want it. POLST is a short and simple form, brightly colored, that is supposed to tell medical personnel what to do.

The POLST provision in the Illinois bill is amazingly brief.

In consultation with a statewide professional organization representing physicians licensed to practice medicine in all its branches, statewide organizations representing nursing homes, registered professional nurses, and emergency medical systems, and a statewide organization representing hospitals, the Department of Public Health shall develop and publish a uniform form for physician do-not-resuscitate orders that may be utilized in all settings. The form shall meet the minimum requirements to nationally be considered a physician orders for life-sustaining treatment form, or POLST, and may be referred to as the Department of Public Health Uniform DNR Advance Directive. This advance directive does not replace a physician’s do-not-resuscitate (DNR) order.



The bill’s reference to national standards presumably refers to the concepts promoted through the National POLST Paradigm Task Force (“Task Force”).

A major concern that NDY has about POLST is that some state laws only require the doctor to sign the form that will be used as the basis to deny life-sustaining treatment. Although the national Task Force recommends that the individual or surrogate signature should be required, it is not required in New York (though there is space on the form for it), and is apparently not proposed to be required in Illinois. According to a letter urging the Illinois Governor to sign the POLST bill into law, promoted through the Chicago End-of-Life Care Coalition:

The new IDPH Uniform DNR Advance Directive form will be a standardized advance directive and a secure document that is completed by a person who is known to have a terminal illness, a chronic condition that will lead to cessation of life, is generally frail, or lives in a nursing home. As a Physician Order for Life Sustaining Treatment (POLST), it is signed by a doctor after the patient has selected clearly presented treatment choices, then entered into the patient’s medical record, and therefore a secure directive for future medical care. (Emphasis added.)





The only purported justification I’ve heard from POLST advocates for why the patient needn’t sign the POLST form is the suggestion that it would be too inconvenient because they are sick. That explanation doesn’t make sense if the person is able to complete the form as described in the Illinois letter.

But the larger question is how can health care providers know that a POLST form signed only by a physician accurately reflects the wishes of the individual? The answer given by POLST advocates is that the physician is supposed to fill out the POLST form based on direct communications with the individual or their surrogate. Basically, we’re all supposed to trust the physician to have those discussions and document them accurately.

There are a lot of potential reasons to doubt whether such unquestioning societal trust can ever be justified in the real world, reasons derived from factors like insurance coverage denials, medical error, medical malpractice, time constraints on physician visits, contractual constraints on “utilization” (i.e. provision of medical treatments), to name a few.

But perhaps the most glaring factor that comes to my mind is the existence of laws in many states which allow physicians to overrule an individual’s advance directive, or individual or surrogate decision, in favor of life-sustaining treatment. These are generally called futility provisions, but they don’t objectively define “futility”. Instead they leave it up to the physician to determine what treatments are required by the prevailing standard of care and what treatments are not. Blanket authority and full legal immunity are vested in the physician, without accountability. Futility policies have been discussed extensively in medical literature, and by commentators including on this blog.

In states which allow doctors to make futility judgments that overrule an individual’s decision for treatment, and in the absence of the individual’s signature or some type of independent oversight and enforcement, how can we ever be sure that a doctor’s signature on a POLST form reflects the person’s treatment choices rather than the physician’s?

Unfortunately the disability community has a lot of experience with devaluation by physicians and other health care providers, devaluation that leads to pressure to forego life-sustaining treatment. We aren’t impressed by empty platitudes and we won’t be getting on the POLST bandwagon anytime soon. – Diane Coleman

Disability Health Disparities Based on Negative Quality of Life Judgments Must Be Challenged

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While national disability organizations work hard to influence the federal budget debates, painful Medicaid cuts are already being considered and implemented at the state level across the country. Getting disability advocates and issues to the table is a major challenge.

The Executive Director of the Center for Independence of the Disabled in New York just returned from vacation to the good news that she’s been appointed by Governor Andrew Cuomo to one of the workgroups assigned to report to New York’s Medicaid Redesign Team, specifically the Health Disparities Workgroup. Among other tasks:

This work group will advise the Department of Health (DOH) on initiatives, including establishment of reimbursement rates, to support providers’ efforts to offer culturally competent care and undertake measures to address health disparities based on race, ethnicity, gender, age, disability, sexual orientation and gender expression. (Emphasis added.)

There is increasing recognition of health disparities impacting people with disabilities. In May 2009, the Disability Rights Education and Defense Fund (DREDF) issued a report, Improving Health and Access to Health Care for People with Disabilities, designed to address important causes of disability health disparity, the lack of accessibility and reasonable accommodation among health care providers:

Our recommendations are provided against this backdrop and focus specifically on:

• Enhancing implementation of federal disability rights laws as they relate to health care systems, facilities, services, and programs, including disease prevention, health promotion, and cultural competency…

DREDF also called for improved data collection on disability health disparities.

In the same month, DREDF joined numerous other disability organizations in a letter urging that disability health disparities be addressed in the context of health care reform:

Heathcare reform must end these health disparities by ensuring:

Access to affordable coverage for Americans with disabilities, including intellectual and developmental disabilities, without regard to pre-existing conditions, congenital impairments, or whether the intervention is habilitative or rehabilitative in nature; …

A delivery system prepared to provide appropriate, accessible, and equivalent care for individuals with disabilities at all levels of service;…

While provider accessibility is a recognized factor in disability health disparities, another cause of disability related disparities is more difficult to document: the denial of health care based on negative quality of life judgments. When it comes to racial and ethnic health disparities, providers’ racial prejudices have been assumed to play a role, but disability prejudices have received less attention. For example, it’s well documented that people with disabilities do not receive preventive services equal to those provided to nondisabled people, but the possibility that some physicians may have a “who cares” attitude about providing equal preventive services has rarely been explored. (See e.g. C. E. Drum et al., Recognizing and Responding to the Health Disparities of People with Disabilities, California Journal of Health Promotion 2005, Volume 3, Issue 3, 29-42.)

The discussion moved significantly forward in September 2009, when the presidentially appointed National Council on Disability (NCD) issued perhaps the most comprehensive report to date entitled “The Current State of Health Care for People with Disabilities.” NCD’s report included extensive interviews and analysis of the impact of negative and stereotyped health care provider attitudes, such as the following deadly example:

In one particularly troubling instance, a provider’s value judgment about a patient with mental retardation led to a year-long delay in treatment for a life-threatening medical condition. The patient suffered from advanced breast cancer that required surgery, but her physician implied that due to her already low quality of life (owing to her disability), she did not merit the intervention, and her guardian did not want to make the decision to go forward without the physician’s support. This woman reportedly died within a year, and there was concern that her death may have been precipitated by the delay in surgery.

In fact, some health care non-treatment decisions are even more explicitly based on provider quality of life judgments, and are expected or even intended to cause death, yet I have not found reference to them in the literature on disability health disparities. Three examples quickly come to mind.

Many will remember the infamous 1995 case of Sandra Jensen who was denied transplants due to Downs Syndrome until advocates fought back on her behalf. Unless disability advocates are able to weigh in during the formulation of transplant criteria and protocols, it appears unlikely that they will be non-discriminatory.

Another increasingly frequent scenario is the “rush to judgment” in response to a new brain injury. Some physicians are slapping “persistent vegetative state” diagnoses on people long before neurological literature would say it’s “appropriate”, and then using that diagnosis as an argument for withholding life-sustaining treatment. One such case involved a young girl, Haleigh Poutre. Physicians argued for withdrawing life support very shortly after a brain injury based on an allegedly certain poor prognosis, but court proceedings involving her abusive father delayed matters briefly and she woke up and went into rehabilitation.

We’re also concerned about how some physicians respond to new spinal cord injuries. A 31-year-old woman formerly on the staff of the Regional Center for Independent Living in Rochester, NY wrote “How I Didn’t Die” about her experiences when first injured at age 19. Doctors urged Terrie Lincoln’s parents to “pull the plug” of the ventilator that she needed, as it turned out, for five months post injury. When she woke up, they urged her the same way, asking if she would really want to live that way. Fortunately, these physicians were hesitant to overrule a determined family.

In all three cases, Sandra Jensen, Haleigh Poutre and Terrie Lincoln, the difference between life and death was an intervention that blocked the health care system from carrying out its devaluation of life with significant disability. Disability advocacy groups, court delays and feisty parents saved these three lives, but what about the people who are not spared the attitudes and trends we glimpsed in these cases?

In 2009, the New York Times Magazine featured an article by Princeton Professor Peter Singer that argued a both a need and a framework for health care rationing, which included anti-disability rhetoric:

If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life. (These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.) If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar.

This is the basis of the quality-adjusted life-year, or QALY, a unit designed to enable us to compare the benefits achieved by different forms of health care.

Actually, bioethicists have gone a step beyond QALYs to DALYs or “disability-adjusted life-years.” As noted in the British Medical Journal, “…the DALY approach implicitly attaches lower value to life extending programmes for disabled people than to corresponding programmes for people without disability.” Arnesen, T. and Nord, E., The value of DALY life: problems with ethics and validity of disability adjusted life years, BMJ. 1999 November 27; 319(7222): 1423–1425.

There’s enough recognition of disability health disparities for disability rights advocates to muscle our way to the table where plans to address health disparities are being formulated at both national and state levels. Once there, I hope that advocates will broaden the demand for data gathering and policy change to include not only the health care behaviors that threaten our health, but also the health care decisions that are explicitly for the purpose of ending the lives of people with disabilities who are seen by many providers as worth-less. – Diane Coleman

Diane Coleman on WBAI “Largest Minority Radio Show” Tonight! (August 10)

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Sorry for the late notice, but Diane Coleman will be on Largest Minority Radio Show on WBAI tonight.  The show starts at 9:00 pm ET.  I’m told she’ll be in the first part of the show.  Here’s the description of the show and how to listen in:

The next edition of The Largest Minority airs Wednesday, August 10, at 9 PM on WBAI New York, 99.5 FM. The program will feature Jim Wiseman, of United Spinal Association, speaking about the recent milestone 21st anniversary of the ADA. Also, we will hear from Diane Coleman from Not Dead Yet about some important developments. Stay tuned!

I’d recommend tuning in at 9:00 pm sharp and listen to the whole show.  It’s always worth tuning into, including informed guests who engage in nonrushed discussions on issues of importance to all of us in the disability community.

Link to WBAI is here.

Click here tonight to listen live (multiple formats supported)

Like the idea of a disability-oriented show?  Like tonight’s show?

If you’re on Facebook, go the Largest Minority Radio Show page and “like” it.

For more info, visit the official page of the Largest Minority Radio Show.