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

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