I heard some alarming but empowering news last week during a meeting of the Twin Cities Disability Ministry Connection. Prenatal Partners for Life founder Mary Kellett explained the dangers and opportunities involved with healthcare policies that threaten the very lives of people like my daughter Carly.
You see, Carly has Angelman Syndrome so some people believe her to be a burden on society. Because she is cognitively and developmentally challenged, her life is considered by some to have less value than mine. While I’ve been well aware of this fact, I was rather naive about how that could impact the care she receives when she is hospitalized. But then I read Bella’s Gift by Rick and Karen Santorum earlier this year. And then I heard Mary Kellett talk about how her son died. And WHY he died. Bear with me while I try to explain the issue here.
Many hospitals have policies granting themselves rights to decide when it is time to discontinue all treatments and “allow” a patient to die. Regardless of a patient or family’s right to make their own healthcare decisions, physicians and hospitals are being given the right to make “medical futility” decisions based on their own judgments about the value or quality of patients’ lives rather than the efficacy of specific treatments or therapies available. “These policies and laws have been crafted to shield physicians and hospitals from legal liability for hastening patients’ deaths,” according to the Human Life Alliance (HLA).
It is not just people with disabilities or special needs who are at risk. Patients who have experienced serious medical crisis after things like gunshot wounds or motor vehicle accidents have also become vulnerable to the dangers of these policies. There are numerous cases reported where medical staff focused on the quality of a patient’s life if he/she did recover instead of focusing on treatments and surgeries that would foster healing and recovery.
The HLA cautions, “before you or a loved one are admitted to any hospital, ask for a copy of the hospital’s ‘medical futility policy’” so that you are not caught unaware and unprepared.
Mary Kellett shares her powerful personal story about how these policies tragically impacted her family. You can read Mary’s testimony before the Minnesota legislature about Minnesota Senate bill SF2238, titled “Hospital Futility Policy Disclosure.” Although the bill passed the house and senate in 2012, it was voted down by the Governor at that time.
Let’s pray that bill will be successfully reintroduced in a future session!
In addition to asking to see a provider’s policy, Mary encourages families, “you can invite your pastor or priest to attend a Care Coordination Meeting when significant life and care decisions are in the balance.” Their presence gives a family comfort and confidence while conveying a powerful message about how the family values life as they advocate for a loved one.