Disability Rights Wisconsin(DRW) is suing the UW Hospital for allegedly violating the law in pushing for withholding of life-sustaining treatment in the cases of two individuals with developmental disabilities.
The story about the case was published in the May 14th issue of the Wisconsin State Journal. Thanks to Tim Wheat (the first to send me the link) and others who alerted me to this. A more permanent copy of the story can be found at DRW’s website.
Excerpt:
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.
But a spokeswoman for UW Hospital said the hospital acted in the best interests of both patients and tried to follow the wishes of their families.
“What is at stake in this case is no less than patients’, parents’ and families’ ability to make private health care decisions in the best interests of the patient,” spokeswoman Lisa Brunette said in a statement.
Disability Rights is suing to change hospital practices and to recover the $4,700 it spent investigating the cases, plus legal costs. 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.
“It’s a great medical institution. They provide great care to their patients,” Hagopian said. “All we want is for them to provide that same great care to developmentally disabled people who are not dying.”(emphasis added)
One has to wonder just how much of this is happening in hospitals across the country, under the radar. Just this last February, the Disability Rights Network of Pennsylvania announced a Superior Court decision clarifying protections for people with developmental disabilities and their right to life-sustaining treatment.
Considering these two cases, it is as good a time as any to invite people to acquaint – or reacquaint – themselves with the “STATEMENT OF COMMON PRINCIPLES ON LIFE-SUSTAINING CARE AND TREATMENT OF PEOPLE WITH DISABILITIES.”
Excerpt:
- People with disabilities are entitled to exercise their rights to life-sustaining care and treatment and to self-determination and autonomy.
- Absent clear and convincing evidence of the desires of people with disabilities to decline life-sustaining care or treatment, such care and treatment should not be withheld or withdrawn unless death is genuinely imminent and the care or treatment is objectively futile and would only prolong the dying process.
- For the limited number of people who have lifelong cognitive disabilities and who have never had the ability to exercise self-determination regarding life-sustaining care and treatment, such care and treatment should not be withheld or withdrawn unless death is genuinely imminent and the care or treatment is objectively futile and would only prolong the dying process.
- When doubt exists as to whether to provide life-sustaining care and treatment a presumption must always be made in favor of providing such care and treatment.
Please check out the entire statement – endorsements can still be made – both individual and organizational. And from the looks of things, the statement is more relevant than ever. –Stephen Drake
Thank you for your tireless efforts to expose the human injustices to individuals.
I do disability awareness training and the need to provide this training is directly linked to the lack of respect for life that society has for individuals with disabilities, and I often reference situations like this to my audiences. Most respond with disgust, and this allows me to urge them to be responsive to the needs, wants, and desires of people-with the ultimate being a good quality of life. As I often state, you can’t have quality of life without having life.
Keep up the great work!
Drat. The only word I can think of that’s printable. I ask a question as someone with cognitive disabilities, and different at different times(due to CFS/ME), and a senior citizen: how do you/we factor in people with cognitive disabilities who are adults, due to varying causes, people with various kinds of dementia and any other disabling condition I omitted, such as people with communication disabilities (result of stroke or other cause) who could get pneumonia as the two people in the article? My reading of the law was not clear enough for me to answer the question. While we have differences as people with disabilities, many of our problems with the hospital world are the same/similar.
Families have power at hospital bedsides of adults, also. (Living will and designated health proxy included or aside. Sometimes people with proxies are ignored or “swayed” by the doctors.
It was interesting to me how one family in the article switched to opposing the hospital denial of treatment, but the other family didn’t. I am concerned about families. I heard from a relative of a friend, asked to write to me because my pal of about 20plus years was physically unable to. My pal’s relative has a point of view that made me uncomfortable and reminded me of family power when someone is severely disabled.
I’m short on time today, so I wanted to give a belated welcome and acknowledgment to Dave Whalen for his comment. Thank you for visiting and your own advocacy work. I plan on using your “quality of life” line in the future – with appropriate attribution.
sanda — there are a number of factors at work. Here are just two – the medical folks make a convincing case for treatment withholding, even to the point of suggesting that *treating* the individual is “cruel.” Second – sadly – some families really do believe that PWDs within their families don’t have lives worth living – making their lives a tragedy and death an end to the “tragedy.” There are other less bleak issues that play out in these cases, but I don’t have time to lay them out right now. –Stephen
I am a dual developmentally disabled/mentally ill SSI/Wisconsin Medicaid recipient. On November 2, 2012 while an inpatient at UW Hospital % Clinics, I was diagnosed with gastric cancer. I requested chemotherapy and was informed that it was ordered, but later discovered that they lied and that it was never ordered. I now sit in my home waiting to die.
I apologize for the delay here in posting your comment. Do you have options for a second opinion? I’m betting they now deny they told you chemo was ordered – did they give you a reason why?