How much of a say do we medically and legally have to control the circumstances of our deaths? And how much of a choice should we have?
Virginians are now being asked to weigh in with their answers.
Two years ago, Del. Kaye Kory, at the prompting of her Falls Church constituents, asked the Joint Commission on Health Care to determine whether Virginia should follow the lead of western states and allow people with terminal illnesses to turn to their doctors for guidance in dying before their disease kills them.
The report is now in, and the commission is seeking comments before discussing what, if any, laws should change.
For Kory, D-Fairfax, medical aid in dying is about choice.
“It’s not assisted suicide,” she said. “It’s about being able to make a choice of how you want to handle your own dying process. It does confer a measure of dignity and independence to the patient.”
Many patients are just like her parents were at the end of their lives — frustrated because so much was out of their control.
Kory wanted a task force to look into what has happened in states with medical aid-in-dying laws, and whether people who opted for this knew about comfort care offered by hospice or whether they were coerced to take their own lives.
The study group found that most patients were already in hospice. It found few cases of coercion.
Mark Swope, director of medical ethics for Carilion Cinic, served on the task force.
He said physicians are evenly split as to whether they would cause harm and violate their oath, or relieve a burden, by helping a terminally ill patient take his or her life.
Swope himself is just as conflicted.
“To be honest, I keep waxing and waning on whether or not I support a law that would allow this,” he said.
Swope said there is an underlying fear that people might be forced or pressured to do something out of a feeling that they are a burden to their families.
“But we respect and pride ourselves as Americans for people making their own decisions and their own health care decisions,” he said. “We’ve been doing that for years with advance directives.”
The Joint Commission is taking public comments on the report, which offers options that range from doing nothing to supporting a medical aid-in-dying law. The deadline for submitting comments is Oct. 15.
Kory said she has drafted a bill but is not sure whether she will introduce it.
“I’m not sure this is the right time to file,” she said. “I don’t want to file a bill that would meet with defeat. I’m waiting to hear what the commission members think and get a sense of public comments.”
A few of the commission members commented on the report during their recent meeting.
Del. Riley Ingram, R-Hopewell, talked about his wife dying nine years ago under hospice care, and of his brother-in-law, who eight years ago was given less than six months to live. The family went on a cruise to Alaska and pushed him around the ship’s deck in a wheelchair. Today, he’s living and in excellent health.
“That’s a miracle, but that’s why I have mixed feelings,” he said.
Del. Scott Garrett, R-Lynchburg, said that as a surgeon he could relay hundreds of stories, and that the topic is a difficult one on which to reach consensus.
“The ethics of dying, just as the ethics of life, divide us as people,” he said.
What Kory didn’t know when she made her request for the two-year study is that Virginians do have some say in end-of-life care, but they are mostly unaware of their rights to decide how much, or how little, medical intervention they want.
Two legally binding documents exist for people to express their wishes:
- An advance directive that anyone can fill out at any stage of life and that is shared with hospitals, physicians and family and friends.
- A POST, or physician order for scope of treatment, that is signed by a physician and patient who is expected to die within a year and that becomes part of the patient’s medical record.
Michelle Chesser, executive director of the Joint Commission, told the lawmakers that only 25 percent of adults have an advance directive, and few physicians are using the POST form because Virginia code isn’t as clear as it could be.
Kory said she plans to learn more about the underused POST form as it could be a good tool that would allow people to express their wishes.
Swope said both POST forms and advance directives bring legal clarity to medical decisions and require that the patient’s wishes be respected. In the rare instances these are challenged in court, he said, the judge always rules to enforce the document.
Without either of these documents, if patients are unable to speak for themselves, decisions are made following the legal hierarchy of family: spouse, children, parents, siblings.
Swope said if it falls to the children to make a decision, each has an equal say, so if they disagree it can become messy. And families often disagree. At least 10 times a month, Swope’s ethics team is called in to recommend a resolution.
Through Oct. 15, the Joint Commission on Health Care is accepting public comments on the end-of-life report.
Submit comments to:
Mail: Joint Commission on Health Care, P.O. Box 1322 Richmond, Virginia 23218