My dad was a healthy 83-year-old man who loved his family, anything that could be measured with a slide rule, and the Dallas Cowboys. One week after arriving home from visiting my family over Thanksgiving, he contracted a 24-hour viral infection that triggered the insidious onset of his worst medical nightmare: ascending paralysis from his feet, to his arms, to his diaphragm. The night before he was placed on a breathing machine, he called my mom and said, “If I’m paralyzed, don’t keep me alive on machines.”
When he died early this year, my mom and I knew that he died on his own terms. We grieve his passing, but our family lives with an enduring respect for his dignity, his self-determination and his right to make his own medical decisions. But the state of Texas has since added an undue burden that strips other patients of the same right to make private decisions with their doctors.
The experience of making difficult decisions in the intensive care unit was like sliding into a deep abyss with random roots and rocks upon which our family could find purchase. My dad was a fiercely independent engineer who had always firmly told me he did not want to be rescued or kept alive by machines, and who was terrified of what seemed to be unfolding.
“Would you prefer CPR?” the attending physician asked him. My dad furrowed his brow and shook his head. “Would you prefer that I enter a DNR order?” My dad nodded. It was an intimate and tender moment. The doctor obliged and entered the DNR order. We shifted our focus back to taking the process day-by-day, praying for the paralysis to pass.
For a man who paid his dues and never quit, my dad’s decision to forgo CPR was not illogical, shameful, suicidal or anybody else’s business.
As the specter of mortality looms, meaningful dialogue between doctors and patients can be empowering. Respectful relationships and informed decisions can foster physical, emotional, and spiritual healing. I know this because I lived through it. And I know this because I have spent my career on the other side of thousands of these clinical conversations.
I practice Internal Medicine and specialize in Palliative Medicine — a team-based discipline that focuses on the expert care of patients with serious illness. We control symptoms such as pain and shortness of breath. We facilitate patient-centered communication. We ensure access to supportive resources. My interdisciplinary team, comprised of specialized doctors, chaplains, social workers and nurses, bear witness to suffering. We are privileged to accompany families as we advocate for life, love, comfort and dignity.
Human mortality should not be neglected, stigmatized or politicized. The dying are still living. They deserve intensely respectful, compassionate care. Physicians are called to ensure that curing, comforting, and caring are cultivated across life’s continuum.
For many of my patients and families, the decision to forego rescue measures can feel like an act of weakness, giving up, bad faith, or denouncing the sanctity of life. Many patients have yet to accept the seriousness of their medical condition and their likely prognosis. Others are reeling with anticipatory grief — sadness, anger, guilt, desperation. All of these factors threaten the ability to find meaning and closure and to make decisions that are most in line with achievable outcomes and personal values.
The U.S. Supreme Court has embraced patients’ rights to refuse unwanted treatment including life support and attempted resuscitation. The court has also endorsed states’ rights to establish criteria for what counts as evidence of a person’s wishes for future medical decisions. States have responded with advance directives that function as durable representation of a person’s wishes over time and across settings. They guide future treatment decisions about life-support if patients become unable to speak for themselves while facing a terminal or irreversible condition. Advance directives are ethically sound legal instruments because they allow patients’ voices to be heard and because they are entirely optional.
Under its new state law, for DNR orders to be valid, Texas now compels any capacitated patient without an Advance Directive to first document their request in writing. In order to die without CPR in a Texas hospital, you must literally complete your paperwork.
Graciously, Texas legislators include one alternative to more paperwork. Patients can, after telling their doctors, repeat the request for a DNR order in front of a witness. By statute, the witness cannot be a member of the treating medical team, a member of the patient’s family by blood or marriage or a person who will claim any part of the patient’s estate. The witness must be a stranger. Thus, if a patient is physically or mentally unable to sign, or simply does not want to, the right to privacy and confidentiality must be checked at the bedside.
Hospital-based CPR yields an overall survival rate of about 1 in 7, and less than 1 in 100 for people with widespread cancer. CPR can also break ribs, leave people attached to machines, and traumatize families. If CPR is high risk for harm and largely unsuccessful, then why are we making it harder to opt out? CPR is now the only medical intervention that requires paperwork and strangers to refuse.
If the Legislature sincerely wants to improve end-of-life care and decision-making, there are more principled and effective strategies than interfering with doctor-patient relationships. We should promote health literacy for the public and communication training for professionals. We should invest in supportive care services and continuity of care. The state could sponsor a broad advance directive initiative so more patients can plan ahead with the help of their trusted providers.
Requiring signatures or witnesses for valid DNR orders creates a chilling effect on accepted medical practices. Doctors will likely avoid discussions about DNR orders, or they may do so perfunctorily. The new law nastily threatens a new punishment for doctors who do not ensure patient compliance: one year in county jail, a $4,000 fine and potential loss of the right to practice medicine.
They say in Texas that a man’s word is his bond. Here, you can cut a billion-dollar oil deal with your word and a handshake. From creation until April 1, 2018, Texans possessed the freedom to forge spoken agreements with their doctors. The law that took effect that day presents itself as a procedural protection of patients’ rights, but it rides roughshod over the frailties and intimacies of medical decision-making. It disrespects doctors, as well as the infirm, disabled and dying. The law is a coercive threat to patients’ rights to privacy, to confidentiality, to dignity and to self-determination. The state wants to rob you of the power of your voice, but the doctors, hospitals and citizens of Texas of have something to say about that, and we hope lawmakers are listening: Come and take it.
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