Lawmakers in Maine for years have turned back proposals to give terminally ill Maine residents the right to take life-ending drugs, and unsuccessful proposals have come before Maine voters twice in the past 15 years.
That perennial debate is sure to return to Maine’s capital. Public support for the right of terminally ill patients to choose to end their lives, after all, is overwhelming. A 2014 Harris poll of nearly 2,300 adults found that 74 percent supported a terminally ill patient’s right to choose to end his or her own life.
The same poll that found such broad support for choice and full control at the end of life had another intriguing finding: Only 28 percent of respondents said they had completed directives outlining their dying wishes — a percentage that’s consistent with what other research has shown. Among people 60 and older, the rate is only 50 percent.
It’s an ironic reality for people so supportive of choice and full control at the end of life. While the debate continues over the right to die, too few have taken concrete action that can give them some measure of control over their end.
At a fragile time, the lack of an advance directive can leave family members confused, overwhelmed or at odds with each other over what they think their loved one’s dying wishes are. The lack of direction could lead someone to make the wrong decision: to continue aggressive treatment, for example, when a loved one might have wanted to die at home as comfortable as possible and surrounded by family.
An advance care directive can keep a difficult time from becoming unnecessarily more complicated. But completing a form that sets out one’s dying wishes isn’t simple. It involves challenging conversations and vexing decisions about a topic that’s often taboo. These conversations happen too rarely in the U.S.
Last month, Medicare proposed to reimburse doctors for advance care planning — taking the time to speak with patients about their dying wishes. It would be the first time doctors could collect Medicare reimbursement for such conversations, meaning it could encourage more of them. Private health insurers should follow suit.
But that won’t be enough to ensure everybody has a plan for the end. That will require a concerted effort among health care providers and other agencies that work with older residents.
Doctors and the health care systems they work for will have to make end-of-life planning a routine part of medicine. In medical school, doctors-to-be should more commonly receive training to broach the end of life. Social workers, counselors and other trained facilitators will have to be available to help people complete advance care directives.
That concerted effort began three decades ago in La Crosse, Wisconsin. Doctors affiliated with the city’s two hospitals made end-of-life planning a routine part of patient care. The Respecting Choices model evolved from the effort, relying on a team of trained people — not just doctors — to help patients through the planning process.
Today, 90 percent of that city’s residents have advance care directives on file to ensure their dying wishes are carried out. And the La Crosse model is spreading elsewhere in the U.S., including to a number of medical practices in York and Cumberland counties.
Those who complete advance care directives most commonly choose the course of action that promotes quality of life at the end, according to a 2015 Institute of Medicine report on end-of-life care. That’s commonly a regimen of pain management rather than continued aggressive treatment. It’s often a choice for hospice care — which is focused on carrying out a patient’s end-of-life care plan and ensuring the greatest possible quality of life at the end.
And research has associated hospice care with reduced pain and depression among surviving family members, reduced health care spending as patients choose less invasive treatments, and even longer survival among some terminally ill patients.
In La Crosse, medical spending in the last six months of life is 32 percent lower than the Medicare average.
That’s part of what can happen when people exercise choice and control — to the extent possible — over their last months and days.
