Monday, July 27, 2015

Are Vermonters Being Pressured to Use Act 39?

From True Dignity Vermont

Around one in five patients who choose euthanasia in the Netherlands acts under pressure from family members, according to a leading expert on the ethics of assisted dying, as reported last week in Dutch News:

According to the report, Professor Theo Boer, who teaches ethics at Groningen’s Protestant Theological University and has for nine years served as a member of one of five review committees that assess every euthanasia case, said, “Sometimes it’s the family who go to the doctor. Other times it’s the patient saying they don’t want their family to suffer. And you hear anecdotally of families saying: ‘Mum, there’s always euthanasia.’”

Here in Vermont, where physician-assisted suicide has been legal for just two years, cases of pressure are already starting to emerge, and it isn’t always family members providing the pressure. True Dignity has spoken with the family of a 90-year-old Medicaid patient who felt pressured by caregivers in the facility where she was admitted for recovery from a fall. The patient did not have a terminal diagnosis.

According to Beth Neill, clinicians at the Berlin Health and Rehab Center informed her mother at regular intervals during her 4-month stay there that she had a “right” to use Act 39, and that, “She didn’t even have to discuss it with her family.” It was the act of repeatedly bringing up Act 39 as a health care “option” that caused her mother to feel pressure, and not overt efforts by clinicians to convince her to request the lethal prescription, Neill said. However, she said her mother made it clear she wanted nothing to do with Act 39 and was disturbed that staff re-introduced the topic repeatedly.

Neill notes that her mother was, and is, in otherwise surprisingly good health for her age, and would not have qualified for Act 39, as the extended stay in Berlin Health and Rehab was strictly for help recovering from her fall.

Neill was not made aware of the situation at Berlin Health and Rehab until after her mother had already been moved to assisted living at a Northfield facility, where she currently resides. When she did hear of it, “It blew my eyebrows off,” she said.

According to Neill, the staff at the Northfield facility informed her that her mother had reacted strongly when they began to discuss care options. “Mom thought they were going to start talking about Act 39, the way they did at Berlin (Health and Rehab), and she blew up at them. She said, ‘I don’t want anyone talking to me about killing myself.’”

That’s when it came out that the staff at Berlin Health and Rehab had talked to her more than once about her “right” to request a lethal prescription. “I recalled then that my mother had been very eager to get out of there, and I had noticed that she seemed frustrated and unhappy, but I didn’t know why,” Neill explained.

Her mother told her that the staff at the Berlin facility specifically stated that Act 39 “is the law,” and in her words, “They said she could ‘off’ herself any time she wanted to.” She told her physician, who adamantly opposes Act 39, “They want me to take a bunch of pills and kill myself.”

Clearly, confusion abounds regarding the duties of medical caregivers with respect to Act 39. Vermont’s “affirmative duty to inform” under the Patient Rights Act requires that health care providers let patients know of all available treatment options, but it is not clear how this is understood to apply to Act 39 . Beth Neill’s mother did not have a terminal diagnosis and would not have been eligible for a lethal prescription under Vermont’s law.  Asked why she was informed of this “treatment option” by health care workers at his facility, John O’Donnell, Executive Director of Berlin Health and Rehab, declined to reply.

True Dignity also was unable to get answers from Berlin Health and Rehab to explain where staff received training around the implementation of Act 39 and what the facility’s official policy is on assisted suicide.

We can only speculate about where some information may be coming from. In a letter to members, the well-funded pro-assisted-suicide group Patient Choices Vermont, an arm of the national organization Compassion and Choices, says that the group Compassion and Choices Vermont has been doing “extensive work educating patients, medical providers and institutions, as well as assisting individuals” to find the “resources they need.” The letter also states, “While details are still being determined, PCV will have an important role to play as health department regulations are developed (and) insurance coverage issues are dealt with.”

We do not know whether or not this group had a hand in helping “educate” staff at the nursing home where Beth Neill’s mother felt pressured to use Act 39. At present, there is no oversight mandated by Act 39 to prevent abuse, and the only other organization we are aware of with resources and staff to educate health care providers about Act 39 is the Vermont Ethics Network, which also receives funding from Compassion and Choices.

States are prohibited from using Medicaid dollars to cover costs associated with physician assisted suicide, but it is unclear whether there are provisions in the State-sponsored Green Mountain Care Medicaid to pay for drugs and doctor visits for patients requesting Act 39.

Because Act 39 contains few safeguards and almost no reporting requirements, it seems that questions will be more abundant than answers for the foreseeable future.

Thanks to a strong family support system and a personal physician who is opposed to assisted suicide, Beth Neill’s mother was able to resist pressure to consider using Act 39. What is unknown is how many other vulnerable individuals are feeling pressure today from family or caregivers, and may eventually succumb, as physician assisted suicide becomes entrenched in Vermont and aggressively promoted by those who may operate from motives at odds with the best interests of the patient.