First Charlie Gard and now Alfie Evans. These are babies who, though verbally silent, still gave clarion warnings to proponents of single-payer health care: The government — not my parents — is in charge of my life.
Charlie Gard was born in August 2015 with a rare genetic disorder that carried a poor long-term prognosis. In July 2017, little Charlie was just 23 months of age and on a ventilator. Over the objections of his parents, British doctors decided to withdraw life-sustaining care. According to British Courts, the National Health Service (NHS), the country’s single-payer system, is the ultimate medical decision maker — not the family. Ventilator support was withdrawn and Charlie died.
Starting in March 2018, another 23-month old British baby hit the headlines. Alfie Evans was a comatose child whose NHS doctors said his condition was hopeless. They wanted to terminate life support, but the parents wanted to transfer their child to Rome’s Bambino Gesu Pediatric Hospital for further care. The British High Court ruled against the parents’ wishes, leaving Alfie’s fate to the NHS. As Justice-Baroness Hale wrote in Aintree v James: “we [referring to patients] cannot always have what we want.” On April 28, 2018, with ventilatory support withdrawn, Alfie died.
Baroness Hale had previously written the following for the British High Court, the U.K.’s equivalent of the U.S. Supreme Court:
Decision-makers must look at [the patient’s] welfare … the nature of the medical treatment in question, … they [decision makers] must try and put themselves in the place of the individual patient.
The patient is not the decision-maker.
According to the NHS Constitution, “You have the right to drugs and treatments that have been recommended by NICE.” The National Institute for Clinical Excellence is an agency that “advises” the government whether to authorize payments or withhold them for treatments deemed “not cost effective.” Your right to do what you and your doctor think best for you medically does not override what NICE decides is cost effective for the government. NICE was the model on which the Independent Payment Advisory Board (IPAB) was created under the Affordable Care Act.
The conflict over who is ultimately in charge medically is not limited to Great Britain’s single-payer structure. In all government-run health-care systems, whether in Australia, Canada, or even here in the United States under Obamacare, final medical decisions are increasingly made by government, not patients in consultation with their doctors.
Consider the question “who’s in charge?” from two perspectives: that of the American public and that of physicians.
Americans prize their freedom above all else. When the government makes medical decisions against the patient’s wishes, it directly infringes on personal autonomy. It is doubtful that Americans would support a single-payer system if they understood what they have to give up in exchange for the promise of government-supplied health care: freedom to choose.
As for doctors: A fundamental tenet of medical ethics is that the patient chooses his or her care. The doctor advises but the patient decides. The patient — not doctor, much less the government or an insurance company — is the final arbiter.
In 2012, the U.S. Supreme Court upheld the Affordable Care Act, which included the infamous IPAB — a government agency with the legal power to tell me what I could and could not do as a physician in my care of patients. This was morally unacceptable to me and so I withdrew from the clinical practice of medicine. I wonder how many of my medical colleagues who support single payer understand that in so doing, they are advocating turning over their responsibility for their patients’ welfare to a faceless government entity that does not even know their patients’ names.
In a health-care system controlled by the government, neither you nor your doctor is in control of your medical care — the government is. If the United States continues down this path, we may one day see American children share the same fate as Charlie Gard and Alfie Evans.
This commentary was originally featured in Real Clear Health on May 10, 2018.