In this month’s newsletter we explore the inhumanity of denying life-sustaining treatment and basic care to those who need it.
In the couple of years preceding my mom’s death at age 87, I accompanied her on many visits to doctors. Whether she was visiting her primary care doctor or a specialist, the experience was always the same. When I brought up new symptoms that mom had been exhibiting or shared my observations, I heard one of two responses – “Your mom has lived a good, long life and you need to let her go” or “The symptoms your mom is exhibiting are normal for someone of her age.” I am not talking about minor aches and pains. In Mom’s last 18 months of life, she experienced significant heart arrhythmia, fainting spells, memory loss, and balance issues. No doctor seemed interested in treating her or in identifying the root causes of her health problems. It became apparent that they simply wanted to send her home to die because she was old.
After watching what happened to my mom, I am deeply passionate that no one should be denied basic medical care. Last week, I had cause to remember this when I interviewed Mary Kellett, Executive Director of Prenatal Partners for Life. Mary’s son Peter was born with a condition called Trisomy 18. The doctors did not comprehend his value, but the incredible love Peter gave and received taught his family much about life. Listen to Mary as she describes the joy Peter brought to everyone around him, and the tragedy that ensued from a medical culture that did not value him. This is the heart-warming and heart-breaking account of a six-and-a-half-year life well lived, and a legacy that lives on.
Mary explained during our discussion that it is not uncommon for hospitals or even clinics to have a medical futility policy. Medical futility policies are based on the premise that life-sustaining treatment can be withheld or withdrawn, against patients’ or families’ wishes, based on arbitrary “quality of life” and/or “cost-benefit” judgments. In many cases, it is the patient’s life that is deemed futile (i.e., useless)—not the treatment. For additional information on medical futility policies, read HALO’s “Medical Futility—What Does It Mean?” fact sheet.
Another example of medical futility is a Texas statute known as “the 10-day law.” According to this law, a hospital committee can decide to withdraw treatment, for any reason, including the subjective assessment of “quality of life.” The hospital can remove treatment, even life-sustaining treatment (ventilator, dialysis, oxygen, antibiotics, etc.) against a patient’s/family’s wishes and they are not allowed to appeal the decision. For more information about this unconscionable law, please see Texas Right to Life’s recent virtual conference where Emily Cook, General Counsel, discusses the ramifications of this law and describes specific cases in which she and others have intervened to save lives.
Without a major change in medical training, attitudes, and laws, more and more of us will be at risk when we seek care. Therefore, it is vitally important that all of us learn how to be advocates for ourselves and others. As Dr. Howard Koh, formerly the assistant secretary for health at the US Department of Health and Human Services, has stated, “Advocacy is the engine for change, and the beauty of it is that it can begin with just one person.”