Roger Redworth remembers his daughter Holly as someone who “lived life to the full.” Holly, who was 31, passed away earlier this year, and her father is only now coming to terms with the circumstances that lead to her tragic death.
Holly, who suffered from a neurological condition called Rett Syndrome, was hospitalized in the United Kingdom at the time of her death. However, when she went into distress, her family says hospital staff did nothing to help her.
“We were all in shock,” her father said. “One minute she was there with her eyes open, and the next minute she stopped breathing.”
Redworth, 66, later discovered that her medical team’s decision to make no attempt to resuscitate Holly was on account of a “do not attempt resuscitation” order placed on her chart without the family’s knowledge. A DNR, as the order is referred to in the United States, instructs medical staff to withhold ordinary means of attempting to revive a patient who has suffered breathing or cardiac distress.
According to the Times, the DNR “is intended to help ensure that a patient’s death is dignified and peaceful.” Clearly, there is nothing “dignified and peaceful” about watching one’s beloved daughter die right before one’s eyes without medical care or assistance of any kind! The Times reports that the family says they were not informed about the order, which they later learned had been made five days before her death.
In addition to Rett syndrome, Holly had a number of medical conditions, including asthma, epilepsy, and a learning disability that the hospital cited in an attempt to justify the anti-Life decision made without her family’s consent. None of these conditions are terminal or untreatable, but the hospital claims attempting to resuscitate Holly would have been “inappropriate, unsuccessful, or not in the patient’s best interests”.
But Holly’s family still valued her life. Her father told the Times, “That order said her life was not worth saving.”
The reality is that DNRs are often placed based on arbitrary quality of life assessments, not what the patient and his or her family believe is in the patient’s best interest. Allowing hospital bureaucracy to make a potentially life-and-death decision without obtaining consent or even informing the patient and family sets a dangerous, anti-Life precedent.
Commenting on the article in the Times, the executive director of the organization Reverse Rett, Rachael Stevenson wrote, “Due to the prevalent lack of understanding around the nature of Rett Syndrome amongst the UK medical community, it is extremely dangerous for hospital staff to be making arbitrary decisions about whether to implement DNACPR [DNR] orders on these individuals without any kind of best interests review or input from family or caregivers.” She explained that with proper care, Rett syndrome is not fatal and does not necessarily inhibit a full and thriving life.
Texas Right to Life worked for years to bring to light the unethical practice of secret DNRs on vulnerable Texans. After a hard-fought battle, Pro-Life elected officials finally ensured that physicians and medical staff must obtain patient or surrogate consent before placing an order. Last year, the new law went into effect. Many personal stories of secret DNRs that proved fatal or nearly-so demonstrate how needed and long-overdue this potentially life-saving reform has been.
Likewise, in the UK, Holly’s story is almost certainly not an isolated incident. One reader commented under the article about Holly, “My wife had a DNR placed on her notes without informing or consulting the family, after being brain injured by the NHS [United Kingdom National Health Service]. Thankfully she lived another 12 years. I only found out by accident – we weren’t supposed to know.”
Although Texas does finally have basic protections for families against secret DNRs, the Lone Star State has a long way to go to fully protect patients. The ongoing case of baby Tinslee Lewis has brought national attention to the unjust and anti-Life Texas 10-Day Rule. No matter the health challenges or disabilities of a patient, the sanctity of human Life and the dignity of the human person demand that our laws respect the ability to receive basic life-saving and life-sustaining care. When such decisions are put in the hands of hospital bureaucracy, all lives are at risk.