At Right to Life of Michigan we’ve been flooded with a rash of calls and requests lately of a most disturbing nature. Patients and their families are finding themselves subject to Kafka-esque actions designed to take aware their autonomy and wishes—with deadly effect.
Jack Lessenberry, Michigan Radio’s senior political analyst, has written an article claiming legislation we’re working on to fix these issues are some sort of fundamentalist religious plot to force patients to stay hooked up to machines forever. He wistfully recalls the days of “Dr. Death,” Jack Kevorkian, killing patients across Michigan.
In his article he quotes an ethicist from GVSU [Grand Valley State University], Dr. Jeffrey Byrnes:
House Bills 5075 and 5076 and SB 597, are being sponsored and pushed by the religious right, primarily Right to Life of Michigan. They are billed as being written to stop abuses, to stop hospitals and doctors from forcing people to die without their consent. But that’s not what’s really happening.
As Dr. Byrnes put it, “Such a bill would allow for a family member – even a family member who had no real concern for their relative’s wishes or well-being – to keep the patient alive for an indefinite period of time.”
What is the real purpose of these bills? They address two distinct problems.
First is the practice of secret do-not-resuscitate orders being placed in patient’s files. Secret DNR orders are just plainly wrong, and it’s wrong for Lessenberry to frame his piece around patient autonomy when he seeks to defend the practice of patients being deceived about the care they expect.
The second problem is equally troubling. We’ve learned that some hospitals are going behind the backs of patients’ families and legal patient advocates to obtain secret court orders to establish guardianship over patients. Family members are showing up at the hospital only to discover hospital staff have taken control over their loved one to end their life.
That is an indefensible abuse of our court system. Secret court proceedings resulting in life or death decisions belong in Soviet Russia, not an America with robust constitutional protections. Patients have a right to have someone defend their life.
The bills would require hospitals to notify family members that they intend to go to court. In addition, the bills would require the doctor or medical facility to prove by clear and convincing evidence that the patient advocate or family is not acting in the best interest of the family before a guardian can be appointed. They also create a standard that assumes it is in the patient’s best interest to be alive, and the hospital has to prove otherwise before taking control of the patient.
There is a creeping assumption in our society that the sick and disabled are better off dead, and some courts are making that the controlling presumption. The default presumption should be that a special case should be required for hospitals to take over a patient’s autonomy to end their life.
There really are situations where a patient’s family is being unreasonable or a patient advocate is violating the patient’s wishes, and hospitals have a duty in those cases to represent the patient’s interest in court. Those situations must be handled in the light of day in a fair court process, however, not railroaded through a star chamber court in the dark.
Dr. Byrnes exposes his real concern, that patients will be in control of their own care, not him:
True, there may be some possibility of abuse today. But he said, “Medical cases in these situations are immensely complicated and can’t be addressed by the simplistic wording” in these bills. He told me [Lessenberry] they would “stop doctors and hospitals and clinical ethicists like myself from being able to stop treatment.”
How could you trivialize abuses like secret court proceedings and secret DNR orders? These are not trivial issues, nor are they complicated. The purpose of a guardianship hearing is to sort out care conflicts, not to rubber-stamp cost-cutting measures that sacrifice patients’ lives.
One of our own staff members directly experienced this, when her conscious father who was asking to be treated discovered the hospital had given up on him and placed a DNR order in his file without his request. What about Bob’s wishes and autonomy? Are death wishes the only ones that count? You can pick whatever treatment you like as long as it’s no treatment at all?
The purpose of these bills is not to let family members keep patients alive indefinitely, as Mr. Lessenberry falsely claims here. Patients do have a right to refuse unwanted medical treatment, and that right should be equally as important as patients who want medical treatment. The purpose of these bills is to prevent hospitals from deception and unjust violations of due process designed to end a patient’s life against their will.
Lessenberry writes, “Many of us want some element of control over our final destiny…”
That’s precisely our point!
As we’ve begun working on these bills and publicizing these cases, we’ve discovered a vast undercurrent. Many believe hospitals will abuse their power to mistreat patients in service of cost cutting concerns. Many of these cases and examples are egregious and have never been publicized. For whatever reason many people don’t believe anyone will speak up for them on this issue, and that there’s nothing they can do about it. That’s about to change.
We’ll see how the broader hospital establishment confronts these proposed change in the law, and if any changes are needed in the legislation as it moves forward, but we ask Mr. Lessenberry and Dr. Byrnes this: are secret DNR orders and secret court orders really the hill you want to die on? What sort of message will that send to an already cynical public?