Not Getting on the POLST Bandwagon

August 23, 2011"end of life", advance directives, life-sustaining treatment, Our News & Commentary Blog, policy, POLSTDiane Coleman

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

August 11, 2011bioethics, daly, health care reform, health disparities, healthcare rationing, Medicaid, medical discrimination, Our News & Commentary Blog, policy, qalyDiane Coleman

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)

August 10, 2011brendan costello, diane coleman, Largest Minority Radio Show, media coverage, Our News & Commentary Blog, tk small, wbaiStephen Drake

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.

Threats to Medicaid Are a Not Dead Yet Issue

August 4, 2011ADAPT, budget reduction, diane coleman, health care reform, long term care, Medicaid, Our News & Commentary Blog, policyDiane Coleman

In transitioning to full time work for Not Dead Yet, I’m bringing my last fifteen years of independent living and health care advocacy experience. I’ve served on a number of boards and committees related to achieving universal health care, protecting and improving health care access for people with disabilities, and reversing the institutional bias built into Medicaid long term care, aka long term services and supports.

It’s probably obvious to most that quality health care is generally important in helping people live well while managing serious chronic conditions, whether they are considered terminal or not. What may be less obvious is the role that long term care policy plays in how people feel about their lives, their relationships and their options.

The Oregon assisted suicide reports are at best thin and superficial, but the doctors who prescribe death-causing drugs indicate that 35 percent of the individuals had “feelings of being a burden.” That’s pretty much a long term care issue.

The infamous case of Kate Cheney makes this point painfully. Ms. Cheney got a lethal prescription in Oregon, in part at the urging of her caregiver daughter. However, she didn’t take the lethal dose until after her daughter put her in a nursing facility for a week so she could have respite from care-giving. Ms. Cheney was effectively given the “choice” of feeling like a burden, being confined in a nursing facility or dying sooner than she otherwise would.

While there are many aspects of long term care that disability rights advocates address (e.g. consumer direction, home care worker training, pay and benefits), the overwhelming majority of advocacy effort is focused on stopping the crushing civil rights violations of a system that is all too quick to shuttle people off to nursing facilities and institutions.

In the public discourse leading up to this week’s deal on the debt ceiling and budget deficit, senior groups kept Social Security and Medicare front and center, but Medicaid was not often mentioned. Over the years, I’ve learned that a surprising number of people mistakenly believe that Medicare covers long term care. But when the time comes that a person needs long term care, all but the well off in our society discover the crucial role of Medicaid in meeting this basic and very human need.

I was just on a national conference call about the “debt deal” and Medicaid, because Medicaid is only exempt from budget cuts if the soon-to-be-appointed Congressional “Super Committee” fails to act or if Congress rejects their plan. One of the conference call speakers said that in the upcoming “Super Committee” negotiations, there is a “bull’s eye” painted on Medicaid.

Moreover, the Super Committee will not just be crunching numbers, it will be writing Medicaid policy. In an aging society, it’s difficult to imagine how cuts to Medicaid would not amount to an unconscionable abandonment of seniors and people with disabilities who need long term care, and many of our family members who do what they can but need help to keep the family together. Whatever happens with the debt deal, we must find ways to stretch Medicaid dollars further to meet this growing need.

The leading disability rights group ADAPT has been pushing four proposals to reform Medicaid by reversing its institutional bias:

Expand the use of home and community-based services.
Demedicalize services, reducing over-reliance on skilled nursing for routine daily tasks.
Expand consumer directed service options, reducing over-reliance on professionals.
Reorganize services based on functional needs rather than age or diagnosis to reduce wasteful and duplicative bureaucracy.

It’s critical that we put these proposals squarely and forcefully before the Super Committee.

To do just that, ADAPT is spearheading a Rally for REAL Medicaid Reform in Washington, D.C. on September 21, 2011 at noon. Not Dead Yet is a Rally co-sponsor and we urge people to attend and help to boost turn out in every way possible. For more information, including materials and contacts to help organize folks from your state, go to http://www.adapt.org/main/medicaid_rally .

Before Not Dead Yet existed, in the late 1980’s, ADAPT spoke out in what we have come to call the “Give Me Liberty or Give Me Death” cases, in which men using ventilators sued for freedom from nursing facilities or, in the alternative, death (David Rivlin, Kenneth Bergstedt, Larry McAfee). ADAPT filed friend of the court briefs in some of those cases, arguing the right to liberty. Nevertheless, courts in state after state articulated what was then a new right to “pull the plug”, no questions asked, and completely ignored the plea these men made for freedom from institutions.

For the disability community, it is as clear now as it was then: threats to Medicaid, and the home and community-based services it supports, are a Not Dead Yet issue. – Diane Coleman

What is Not Dead Yet??

August 3, 2011Our News & Commentary BlogMary Johnson

Not Dead Yet is a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill and disabled people. Not Dead Yet helps organize and articulate opposition to these practices based on secular social justice arguments. Not Dead Yet demands the equal protection of the law for the targets of so called “mercy killing” whose lives are seen as worth-less.