Health care-providers often fail to discuss end-of-life care preferences with patients, an omission Massachusetts regulators hope to change with proposed new rules that would require physicians and other staffers at hospitals, nursing homes, and health centers to provide information about choices for people near death.
Terminally ill patients would receive an informational pamphlet that explains, at a minimum, advanced care planning, and identifies the availability of palliative care—which focuses on preventing or relieving pain and suffering and enhancing quality of life, and includes hospice care.
The proposal, presented Wednesday to the Public Health Council, an appointed body of academics and health advocates that sets regulations, also requires each state-licensed health facility to inform all of its physicians and nurse practitioners to provide end-of-life counseling to terminally ill patients.
“We feel this ... will raise the bar on the conversation that goes on between physicians and patients,” Dr. Madeleine Biondolillo, director of the state health department’s Bureau of Health Care Safety and Quality, said in an interview.
A health-care cost containment law approved last year required the state health commissioner to adopt end-of-life care regulations for health facilities. The rules are a small portion of the recommendations suggested nearly three years ago by a state-convened expert panel to improve Massachusetts’ lagging system for end-of-life care.
“This is a reasonable first effort that will catalyze a lot of discussion,” said Dr. Lachlan Forrow, director of ethics and palliative care programs at Beth Israel Deaconess Medical Center, and chair of the expert panel.
“It’s such an obvious, simple, no-brainer, that patients should know what their options are,” Forrow said. “We have avoided these conversations.”
Forrow’s panel recommended several improvements, including training for caregivers, who often receive little guidance about discussing the sensitive issue with patients, and said facilities should be required to report training progress to state health officials.
“There has been progress, but not nearly enough,” Forrow said.
Biondolillo said the new rules do not include a reporting or enforcement provision, but compliance will be monitored when her department reviews a facility’s license for renewal or if it receives a complaint.
She said her department is hoping to complete the end-of-life-care pamphlet by early spring, around the time the regulations would likely go into effect, after considering any suggestions that may come from a Nov. 21 public hearing on the proposed rules.