The Basics: CT’s effort to expand patients’ end-of-life care options
The Senate Thursday passed a bill that would establish a process for people with terminal illnesses to document the sort of end-of-life care they want in a medical order for health care providers to follow. People who work in emergency medicine say it’s needed to address shortcomings in the options people currently have for making their wishes known.
The measure, which Gov. Dannel P. Malloy has indicated he supports, now goes to the House.
The bill would let the state Department of Public Health create a pilot program for the use of “medical orders for life-sustaining treatment,” or MOLST, a process in which terminally ill patients discuss their options with a health care provider, determine the type of end-of-life care they want, and document it in a medical order.
Patients would be able to outline choices that include whether they would want only treatment that provides comfort, limited interventions such as antibiotics, or full treatment that could include intubation and intensive care.
What does the bill not do?
The bill would not require people to create medical orders (they would be voluntary) and would not require people to choose a particular type of end-of-life care. People could use the orders to ask for aggressive life-saving care or comfort measures only, or something in between.
The proposal also doesn’t include any funding to pay health care providers to discuss end-of-life care with patients.
Who does it affect?
People with terminal illnesses who are approaching the end stage of a serious “life-limiting” illness or who have advanced, progressive frailty, and their families.
Because the bill calls for a pilot program, not statewide implementation, it would only directly affect people who live in the areas chosen by the state Department of Public Health for the pilot. The department is considering running the pilot in two areas: one urban and one rural.
What started it?
People who provide emergency medical care say they often see dying patients whose wishes aren’t known. Often, that means that patients receive more aggressive care than they might have wanted, or their family members are left to agonize about what to do.
Although state law already allows people to complete advance directives to explain the care they want, people who work in emergency medicine say advance directives are often inadequate. They don’t carry the force of medical orders and are often vague. Medical providers say they don’t always know if a patient’s advance directive is still in effect, and because they’re not orders, family members could ask that they not be followed.
MOLST, by contrast, would be completed with a health care provider. In addition, supporters say, having a standard process for documenting people’s wishes would make it easier for providers at one hospital to know about the wishes a patient laid out with a doctor at another facility.
“It encourages the primary care provider to have the conversation before a crisis occurs,” said Suzanne Blancaflor, a state public health official who has played a key role in the department’s work on end-of-life issues.
The push for medical orders for life-sustaining treatment originated in Oregon more than two decades ago. More than 40 states now have similar medical orders programs or efforts to create them.
What’s the debate?
A similar proposal last year drew staunch opposition from people with disabilities, who worry that the process is often aimed at limiting treatment and argued that last year’s bill didn’t include enough protections to ensure that people weren’t pressured into forgoing treatment. They say it’s important that patients get balanced information about their choices, rather than messages that present being on a ventilator or feeding tube as horrible.
“It’s very important to understand that this whole process needs to not become a checklist,” said Catherine Ludlum of Manchester, who opposed last year’s bill. “It needs to be a productive and useful conversation between the patient and the health care practitioner.”
Ludlum was among the people with disabilities who worked with the state health department to craft this year’s proposal, which she and other former critics of the concept say includes important safeguards that many other states don’t have.
This year’s bill requires that the orders be signed by the patient or a legally authorized representative, and that health care providers discuss patients’ goals for care and treatment and the benefits and risks of different methods for documenting their end-of-life care wishes before asking for a patient’s signature.
In addition, the bill requires that health care providers who write the orders receive training on the importance of talking with patients about personal treatment goals, methods for presenting choices without directing people to a particular option, and awareness of factors that could affect the use of MOLST, including race, ethnicity, age, gender, socioeconomic status, mental illness and disability.
People with disabilities have cautiously embraced this year’s proposal. The Connecticut Catholic Public Affairs Conference, which also opposed the proposal last year, supported the concept at the committee level.
Some people still have concerns, though. They’ve warned that the process could lead to people being undertreated and could make it harder for patients who change their minds to get the care they want. Some have warned that patients could feel pressured into accepting less treatment.
How they voted:
The Senate passed the bill unanimously Thursday. The bill previously cleared the Public Health Committee, 25 to 1, with Rep. Debralee Hovey, R-Monroe, casting the sole vote against the measure.
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