Most individuals residing in assisted living communities consider themselves to be at home, free to make the same sorts of lifestyle decisions available to them were they to live outside of a designated retirement community. But what about the repercussions a senior living provider could face if a resident wants to make an end-of-life decision relating to his or her health and well-being?
Back in August 2011, the story of an elderly couple living in a New Mexico retirement community made national news when they decided to halt their food and fluid intake (known as Voluntarily Stopping Eating and Drinking, or VSED)—and their assisted living community tried to evict them as a result.
Though instances of VSED are extremely rare, the case brings up a question that may become increasingly relevant with a rapidly aging population: How should senior living communities handle residents’ end-of-life decisions?
Do Assisted Living Residents Have Autonomy?
The New Mexico community’s management said in a statement at the time that if a resident “requires alternate placement, medical attention, or a level of care beyond the community’s capabilities, we have an obligation to notify a medical provider.”
However, some argue that if residents have previously and clearly expressed their end-of-life wishes, including the plan to stop eating and drinking, then they should be allowed to do so while remaining in their chosen residence.
“You expect the rights and the privileges that come with being in your own home,” says Barbara Coombs Lee, president of Compassion & Choices, a national non-profit organization dedicated to ‘expanding and protecting the rights of the terminally ill.’
“What we would like is the kind of forethought and policies that would allow those communities to be welcoming and nonjudgmental for legal decisions,” she continues.
If a resident has an advanced directive, or “AD,” that expressly indicates his or her end-of-life wishes, then senior living administrators should honor that, Coombs Lee says.
It’s a good idea for residents to have consulted a primary care physician and to talk with management at a community ahead of time about their end-of-life wishes, she says. Their AD should be completed, up-to-date, signed, witnessed, and be readily available and present for staff to see were a situation to arise.
What are the Provider’s Responsibilities and Risks?
From a provider’s point of view, the navigation between a resident’s wishes, the community’s liability, and industry regulations can get pretty tricky.
“As providers, we’re always trying to make sure we communicate well and understand the needs and desires of our residents,” says Michelle Hamilton, senior vice president and chief of assisted living operations at Country Meadows Retirement Communities, based in Hershey, Pa. “It’s a
careful walk, with trying to manage the resident’s dignity and their independence, but also at the same time being a good steward and watching out for that person and their family, and watching out for the company.”
Most of the time, residents at Country Meadows communities aren’t at a point where end-of-life decisions are big issues, says Hamilton, as they usually transfer to skilled nursing or hospice care before then. And while the company doesn’t require incoming residents to fill out ADs, they’re strongly encouraged to do so.
In cases where residents decide to enact certain plans with the intent of ending their lives on their own terms, it’s extremely important to closely examine each individual case, determine competency, and allow for the possibility that they may end up changing their minds, she says.
“We would look at that [situation] and say, ‘OK, is the family on board? Have the residents met with a physician? We would ask for documentation from the physician that they fully understand [the implications of their decision]. We would have to examine all of that,” Hamilton says. “If we want to honor that [decision], we would do a shared risk agreement, and we would look at [the case] very closely.”
Resident Decision-Making and Advance Directives
Nationwide, every competent individual has the right to refuse life-saving care. In 1990, Congress passed the Patient Self-Determination Act, which requires healthcare providers who get federal Medicaid/Medicare funding to inform all adult patients that they can either accept or refuse medical treatment, and that they have a right to create an advance directive.
Although having an AD isn’t universally required, some administrators may direct residents to create a living will upon entering a senior living community, says Mimi Mahon, PhD, RN, FAAN, a palliative care nurse practitioner who is currently an associate professor at George Mason University’s School of Nursing.
If administrators encounter residents who are unsure of how to frame an advance directive, she recommends suggesting these two questions:
- If you are unable or choose not to participate in decision making, who can/should represent your wishes?
- If you’re unable or choose not to participate in decision making, what about your health do you want us to consider?
In cases where there’s not an AD, Mahon says providers need to ensure that an individual can be deemed competent before allowing them to carry out certain end-of-life wishes.
“For an administrator, the best thing to do is get a consult,” she says. “Find out who the palliative care service is in that area.”
State Regulations and Industry Liability
Generally speaking, how to handle senior living residents’ end-of-life wishes is addressed under individual state laws, says Drew Graham, an Aging Services regulatory and litigation specialist with the Atlanta, Ga.-based Hall, Booth, Smith & Slover, PC law firm.
However, liability often isn’t the biggest concern when it comes to cases like these, where an individual may refuse treatment or stop eating and drinking.
“Most states give immunity or clear guidance to facilities on how to handle [these cases],” says Graham. “Facilities worry about following the rules. It’s a regulatory issue.”
Regulations vary state by state, he continued, and most communities are concerned with making sure they abide by state rules. And he, too, emphasizes the importance of establishing competency, especially in cases where there is no AD.
“Competence is key,” he says, adding that some states require senior care communities to send residents to the hospital in certain circumstances, in the absence of an advanced directive.
Ultimately, if a senior living community wants to avoid assisted suicide, then they need to say in their policy that they won’t allow it, Mahon says.
While competent individuals are legally able to refuse life-saving care, regulations vary state by state for individuals without an advanced directive, so it’s important for administrators to know their state’s rules, and it’s a good idea to have residents create advanced directives. Individual cases may vary, and senior living providers need to walk a fine line between honoring residents’ rights and wishes while at the same time managing risk and liability.
Written by Alyssa Gerace
This article is sponsored by the Assisted Living Federation of America (ALFA) as part of its efforts to advance excellence and explore topics impacting the future of senior living. For more information about ALFA, visit www.alfa.org.