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Friday, April 13, 2012

Medical Futility Policies

Thankfully, most people do not ever have to deal with Medical Futility policies. Unfortunately, parents of Trisomy children need to educate themselves about it.

The Free Dictionary defines it as:
medical futility,
1 a judgment that further medical treatment of a patient would have no useful result.
2 a medical treatment whose success is possible although reasoning and experience suggest that it is highly improbable.
Mosby's Medical Dictionary, 8th edition. © 2009, Elsevier.

futility [fu-til´ĭ-te]
the quality of not leading to a desired result.
medical futility the judged futility of medical care, used as a reason to limit care. Two reasons for making this judgment are (1) to conserve resources and (2) to protect clinician integrity. The types are physiologic futility and normative futility.
normative futility a judgment of medical futility made for a treatment that is seen to have a physiologic effect but is believed to have no benefit.
physiologic futility a judgment of medical futility based on the observation of no physiologic effect of the treatment.
Miller-Keane Encyclopedia and Dictionary of Medicine, Nursing, and Allied Health, Seventh Edition. © 2003 by Saunders, an imprint of Elsevier, Inc. All rights reserved.

medical futility
Futile resuscitation, futility Biomedical ethics A subjective term that encompasses a range of probabilities that a Pt will benefit from efforts designed to improve his life and survive to discharge from a health care facility Medtalk The lack of efficacy of a particular maneuver in ↓ M&M. See Advance directive,DNR, Futility. See DNR orders. Cf Euthanasia.
McGraw-Hill Concise Dictionary of Modern Medicine. © 2002 by The McGraw-Hill Companies, Inc.

Yes, MANY hospitals have policies regarding medical futility! These covert policies guide withholding treatment to infants (and adults) in certain circumstances, DESPITE PARENTS' DESIRES. It includes things such as a physician-written DNR that trumps the parents' choices, to covert injections of medications in doses high enough to cause death, to withholding of nutrition and fluids, to mysterious deaths for no apparent reason.

If you don't believe this happens, there are many stories of trisomy children mysteriously dying after routine procedures or surgeries where the prognosis was good. Mary Kellett, from Prenatal Partners for Life, unfortunately has first hand experience of medical futility policies. Mary's son, Peter, passed away in 2011, and the hospital led them to think he died of a infection. They were encouraged by the funeral home to have an autopsy, it confirmed that the hospital was responsible for his death and they knew what they were doing. They allowed sweet Peter to fill and drown in his own blood while pumping him with fluids, all while lying to the mother who kept asking them if he was internally bleeding. This is the worst nightmare of any parent whose child is in the hospital... that the doctors and hospital you entrust your child to allow things like this to deliberately happen.

Do you know about the Medical Futility Bill? Until this is federally mandated, we (the disability community) should fight for this at our state's level. It requires hospitals to disclose their medical futility policies to parents of minor children and to the Department of Health. It is currently being lobbied at the federal level by Michele Bachmann. Idaho has recently signed into law the Medical Consent and Natural Death Act. It is being discussed in MN. The amendment was adopted, but must now go to conference since it was not in the original house bill that is has been added to. It was recently debated in a MN House informational hearing. Here is the audio of the brave testimonies of several families. The first person to testify is Mary Kellett.

Here is a good resource to follow what is going on across the country with respect to medical futility issues.
Sweet Peter Kellett, trisomy 18, victim of a medical futility policy.

Testimony in Support of SF2238 - by Mary Kellett

Thank you, Mr. Chair for the opportunity to speak before the committee. My name is Mary Kellett and I am a resident of Maple Grove.
I am a mother of 11 children the youngest of which, Peter, had a condition known as Trisomy 18. I want to speak in support of Senate file 2238 and tell you my story because I believe it is important for you to know as you consider the need for this legislation.

Peter’s story- when I was 19 weeks pregnant, an ultrasound revealed markers for a condition called trisomy 18. We were offered an amnio, which we refused because we didn’t want to risk hurting our baby. We were told we would have more choices if we knew for sure. We said we would never abort our baby, but would love him no matter what he had.  We named him Peter. We were told there were no survivors beyond 2 weeks with trisomy 18 and that most people aborted babies like this. At 33 weeks I had an emergency c-section. Peter weighed 3lbs and 2oz. Peter was given excellent care until day 2 of his life when a fish test revealed he did have trisomy 18. At that time it was recommended to us that we stop all treatment, wrap him up in a blanket and let him die. We were told he would lead a life of terrible pain and suffering and would never know us or respond to us. My daughter went on the Internet and found many children living with this, some in their twenties and thirties. When I asked the doctor why he had lied to me, he said, “ Well how these children do largely depends on the choices their parents make for them.” I responded,” How can parents make decisions when they don’t receive accurate information.” He then said, “Well, we have to think about resources and you know Peter will never be able to contribute to society and will be a horribly burden to your family.” I started to cry, because I knew resources meant money and it hurt so badly to have a doctor tell me my son wasn’t worthy of the needed treatment to help him live.
Another woman doctor who I had never met until after Peter was born came into my hospital room and said she wanted to talk to me as a mother, not as a doctor. She said that if I wanted to be a good mother to my other children, I had to let Peter go, because he would be a burden to our whole family and it would not be fair to them. I could do nothing but cry. We were told our son’s heart defect was fatal. Something told me the doctor was not telling the truth, so we made our own appointment with a pediatric cardiologist who shook his head and said Peter’s heart was stable and functional, but he did need a minor surgery called a PDA ligation. The doctor at the hospital told us that Peter was not a candidate for this surgery that was described to us as open-heart surgery. We were asked why we would want to put our son through that. It was not open heart surgery but a minor procedure to close a blood vessel. This is just a small example of the incomplete, inaccurate information and out right lies we received. We were pressured over and over to sign a DNR. We were even told we could not receive home care visits from a nurse unless we signed a DNR. I called the director of the home care-nursing program and asked her if this was true. She was flabbergasted and told us this was not their policy, nor had it ever been their policy. When I confronted the doctor about that she said, “Well they must have changed their policy, to which I responded no, it has never been their policy. We were very concerned about our son’s welfare. It was very hard leaving him at the hospital, knowing they felt as they did. We called the head doctor of the NICU at the U of M for a second opinion and shared our concerns. When the doctor at the hospital Peter was staying at found out, she was very angry. The next day she said we had 2 choices, we could take Peter home or we could transfer him to Childrens, she already called and they had a bed ready for him. She said we had to leave HER hospital.

We decided to take Peter home. He only weighed 3lbs 11oz. He thrived on all the love and attention and grew and did many things we were told he would never do, like drink from a bottle and eat by mouth. He knew us and loved us, and we loved him. He was the happiest, sweetest little boy, who was everyone’s favorite. He was never, every a burden, only a joy and a blessing. He made us all better and taught us so much about love and compassion for others. He was the best of us. Peter died at Children’s hospital in Mpls at the age of 6 1/2 after having his appendix removed. I have to wonder if he was a victim of their hospital’s futility of care policy. I have talked to many other families who also have children with disabilities that have similar concerns and stories to share. By having this policy, doctors and hospitals are making a value judgment about children that only parents have the right to make.

In conclusion, I want to say that this bill simply gives parents the right to know if a hospital has a futility policy and what it is.  It provides a level of consumer protection in health care choice. Parents shouldn’t carry the burden of fear and stress over the policies of the hospital, especially during a medical crisis. They have a right to know before they bring their child, disabled or not, to that hospital. And they have a right both legally and naturally, to be the decision makers of their child’s health care. Please pass this bill. Thank you.

“There is a place in the world for children with special needs. We all are ‘differently-abled,’ with flaws and gifts. These children are teachers of our souls, and society desperately needs the lessons and blessings they bring.” ~Mary Kellett


  1. The kellett family is one of the most amazing and generous families I know..sweet little Peter was loved by so many and it's so unfair he was taken from them.As sad and heartbreaking this is it has to be told...thank u for highlighting and helping make others aware of these horrible things that really do go on in our hospitals all over the world.

    1. Thank you for such an excellent post, Susan. The Kellett family is amazing and I am proud to call Mary my friend.

      Years ago, when I began to share the story of my daughter from Canada, Americans seemed at times to be incredulous. The concept of futility had not yet hit in your country.

      It seems that my country has progressed well beyond the definitions you provided. A few years ago, the intensive care community published a paper in which described a "working" definition of medical futility. Patients might be considered to be futile if their treatment requires extensive resources and they are deemed not likely to ever live independently. It gets worse though. The doctors' college does not require them to obtain consent or even to inform the family in such cases. The Coroner's guidelines consider deaths which occur from withdrawal of treatment without consent when the patient is deemed to be futile as "natural."

      Trisomy families must be very cautious if their child is in the ICU- regardless of the country they live in.

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