Disability Rights Wisconsin sues University of Wisconsin Hospital and clinic to change its policy on witholding treatment from patients with developmental disabilities

From the Wisconsin State Journal (h/t to Medical Futility and Wheelie Catholic):

Disability Rights Wisconisn has sued the UW Hospital and Clinic to change the hospital's policy for witholding treatment from patients with developmental disabilities. "Attorney Mitch Hagopian said he worried some UW Hospital doctors may be too quick to suggest withdrawing treatment from a developmentally disabled person they perceive to have a low quality of life." Here is an excerpt from the article:

In a case that could have broad legal implications for when some patients are allowed to die, an advocacy group is alleging that doctors at UW Hospital broke the law by withholding treatment from two developmentally disabled patients with apparent cases of pneumonia.

The guardian of one patient, who survived, at first went along with and then later disagreed with the decision to withhold care, the lawsuit by Disability Rights Wisconsin alleges. The parents of the other patient, who died, pushed for the withdrawal of treatment, according to the group’s complaint filed Thursday in Dane County Circuit Court.

One medical ethicist said the case could help to clarify a difficult question in state law: How much power do families and guardians have to make medical decisions for vulnerable patients such as children and the developmentally disabled?

Disability Rights contends state law prevents parents and guardians from withholding treatment from patients who can’t make that decision for themselves unless they are in a “persistent vegetative state,” a condition the group says did not apply to the two patients in the lawsuit.

The full story is here.

CACL press release on Kaylee Wallace

via Not Dead Yet

Following my post last week about Kaylee Wallace, the Canadian Association for Community Living (CACL) have issued the following press release about the issues surrounding the case:

FOR IMMEDIATE RELEASE
April 9, 2009
Family’s Heartbreaking Plight Sheds Light on Deeper Issues

From Day One it’s been all about what Kaylee Wallace won’t do. She won’t go to school, she won’t walk, she won’t live a typical life. One of the first suggestions was not to feed her. It seems there has been very little about what she might do, what she could become and that her life, while following a different path, could be just as fulfilling, just as wonderful and just as valued as any other. The take away message has been that a life with a disability is a fate worse than death.

The Wallace family, and many that have come before them, have found themselves in a heartbreaking predicament. They are told by medical professionals and experts that their daughter’s life is in immediate peril. That efforts to support her are futile, that the family should leave her be and let her die with dignity. Families, under pressure, often sleep-deprived and in the throes of emotional trauma rely on their trusted doctors to provide them with unbiased information. They rely on their doctors to treat their children, not just with dignity and respect, but to treat their medical conditions.

Life-and-death medical decisions are being made on a particular perspective of quality of life. If your child is not expected to follow a particular path perceived by others as typical development then the quality of their life is brought into question.

As a family-based, national association which advocates for people with intellectual disabilities and their families, the Canadian Association for Community Living is concerned that this tragic situation is another example of a child’s treatment being defined and determined by disability. Joubert Syndrome is not described as a terminal illness. The breathing difficulties often associated with the Syndrome are more commonly known as apnea which is a highly manageable condition - one that most people with Joubert Syndrome outgrow. It is hard to get an accurate account of the specifics with Baby Kaylee. Joubert Syndrome, as with many disabilities, doesn’t not have one predictable outcome. Yet, the focus of Baby Kaylee’s short life has been that imminent death was the only outcome.

The active devaluation of the lives of persons with disabilities is a disturbing trend. Misinformation about disability is a real concern for individuals and families who live with disability. The lack of public discussion about the impact of devaluation makes
people with disabilities and their families extremely vulnerable. The perception that a life with a disability is not worth living is perpetuated in the media interest surrounding the Wallace family and other similar stories. The increased demand for prenatal testing and the pressure prospective parents experience to terminate when an “anomaly” is detected risks leading us down a dangerous road reminiscent of our eugenic past.

Baby Kaylee may not survive. If that heartbreaking outcome is to be her reality it should not be because she hasn’t received all of the treatments and health supports she deserves.

For more information contact Anna MacQuarrie 416-602-3015

The Canadian Association for Community Living is a national association of 40,000 members, 400 local and thirteen provincial and territorial associations for community living, working to promote and achieve the full inclusion of people with intellectual disabilities in all aspects of community life.

Contact Information:
Canadian Association for Community Living
Kinsmen Building, York University
4700 Keele Street
Toronto, ON M3J 1P3
Tel.: 416-661-9611 ext 204
Fax: 416-661-5701
Website: http://www.cacl.ca/

Amputees fight caps in coverage for prosthetics

The following is an excerpt from USA Today (thanks to What Sorts of People for the link)

BURLINGTON, Vt. — After bone cancer forced the amputation of her right leg below the knee, Eileen Casey got even more bad news: Her insurer told her that she had spent her $10,000 lifetime coverage limit on her temporary limb and that the company wouldn't pay for a permanent one.

"It was shocking to find out I was going to have to take out a loan to buy myself a leg so I could keep working and living independently," Casey said. At the bank, she said, she burst into tears when they asked what the loan was for.

Since then, Casey has joined a nationwide fight by amputees and the prosthetics industry to get the states and Congress to require fuller coverage for artificial limbs. The insurance industry is fighting the effort, saying such mandates drive up costs and reduce the flexibility customers want.

"Shoving us off the lifeboat in a pandemic"

That's the title of Steve Drake's (Not Dead Yet) response to this story by the Associated Press yesterday which reports on a list of recommendations/guidelines that a panel have drafted for which patients doctors shouldn't treat (should let die) in the event of a pandemic or other disaster.

If hospitals were to follow the recommendations to a tee, those patients that wouldn't be treated during a pandemic include:

- people older than 85
- those with severe trauma, which could include critical injuries from car crashes and shootings.
- severely burned patients older than 60.
- those with severe mental impairment, which could include advanced Alzheimer's disease.
- those with a severe chronic disease, such as advanced heart failure, lung disease or poorly controlled diabetes.

Here is a link to the AP story. And here is a link to Steve Drake's response.

Medical research and the participation of children

From the Seattle Post-Intelligencer

Full text here.

Should children have a say in their own medical care?
At what age is a child old enough to understand what his or her options are?
Do the rules change if it is an experimental treatment or a research trial?
What if the child, owing to mental illness, is not able to participate in the decision about treatment?

Children's Hospital and Regional Medical Center in Seattle will be discussing these and other ethical questions at a conference this coming Friday and Saturday (14 and 15 July) at the Bell Harbor International Conference Center, 2211 Alaskan Way, Pier 66, Seattle. The conference is sponsored by the Treuman Katz Center for Pediatric Bioethics and is called "Current Controversies: Navigating Conflicts When Parents and Providers Disagree About Medical Care." For more information, visit the conference Web site.

NEJM Article About Medical Futility Laws

The New England Journal of Medicine has an article by Robert D. Truog, M.D., a professor of medical ethics and pediatrics, that comments on the Emilio Gonzales case in Austin, Texas. The article gives a good overview of the provisions of the Texas Advance Directives Act, which Emilio's doctors invoked to authorize the removal of his life support, and it presents a variety of reasons that doctors give to justify their refusal to continue treatment. It also discusses hospital ethics committees, which are authorized to decide whether or not it is ethically appropriate to trump the surrogate's wishes to continue treatment, and raises a number of objections to them, noting in particular their constitution, which in the case of Emilio, he argues, was hardly "a jury of peers for a low-income woman of color and her infant son." He discusses various suggestions for improving hospital ethics committees, and the pros and cons of these, including those associated with the formation of "ad hoc committees."

To listen to an interview with Dr. Truog go to: http://www/nejm.org.