What choices would you like loved ones to make for your end-of-life care? Advance directives can help them avoid administrative hassles that interfere with patients’ wishes during an often emotional time, say a local attorney and a end-of-life service provider.
“When my mom was 80 years old, she had a stroke. Immediately afterward, she was cogent but cloudy,” says an Asheville man who prefers to remain anonymous. His mother had not made her medical wishes known in any formal way, he says.
“She more or less told my siblings and me, ‘I want to die,’ and [she] was moved to critical care shortly after.”
But the elderly woman remained on life-support measures for nearly a year. Meanwhile, it took time for the eight surviving adult siblings to reach a consensus on her care, says the Asheville man. A lack of dedicated guidance from the hospital impeded the process, he says. “The medical machine is great at extracting money from people, for keeping them alive through Medicare and insurance, without considering quality of life. … There’s no room for conversation about what should actually happen.”
Eventually, the siblings agreed to remove their mother from life support and be with her when she died, the Asheville man says. “But it took my sister’s partner, a professional facilitator who had an outsider’s perspective, to say, ‘This is not good for your mom,’ before everyone could make the conscious shift to let it happen.”
From home to hospital
Asheville attorney Eva Clement offers a legal perspective on end-of-life experiences like these: Until a few decades ago, the vast majority of Americans died at home, but now, at-home deaths are rare, she says. “The legal world hasn’t totally caught up with how drastically that shift happened,” says Clement.
“We’re caught in this really awkward place between the medical profession’s legal requirement to extend life, regardless of what that really looks like, and the reality, which is that most people do not want to artificially extend their life with no regard to cost or quality of life.”
Advance health care directives are a proactive measure against this end-of-life gray area and the painful scenarios it can cause, she explains.
By stating patients’ medical care preferences regarding terminal illness, incapacitation and death ahead of time, advance directives assist surviving family members in making critical decisions when patients can no longer speak for themselves. Advance directives are often known as “living wills,” though the latter term is sometimes used more narrowly in reference to specific types of directives.
Advance directives also free medical professionals from liability, a key reason that hospitals provide prolonged, expensive care when patients are terminal. In practice, the “do no harm” obligation often precludes end-of-life measures like the removal of a ventilator or feeding tube. But following a patient’s wishes, whether spoken or through an advance directive, releases the medical staff from liability.
In a living will, Clement explains, people state their wishes about when to receive life-sustaining measures, such as feeding tubes and artificial respiration, versus palliative care, which focuses on relieving pain and easing symptoms. Directives may also include other types of medical self-determination, such as choosing to be an organ donor or not.
Despite the benefits of advance directives, there are widespread problems with establishing and enforcing them, says Clement. “For one, most people don’t have them,” she says, “and the people who actually have [directives] don’t make them well-known enough to be put into practice.”
A participation problem
According to a 2014 study published in the American Journal of Preventive Medicine, fewer than 27 percent of adults have prepared advance health care directives.
Cultural attitudes about death contribute to the lack of participation, says Caroline Yongue, founder of the Asheville-based nonprofit Center for End of Life Transitions. CEOLT helps individuals prepare for death through education and alternative hospice and burial services. “All of us are going to die,” says Yongue. “People forget that. They don’t want to look at that,” she says.
Yongue once worked as a home funeral director but began offering workshops on advance directives, based on her observation that no one was prepared for death. “We’ve got lots of choices,” she says. “Most people are unaware of what their choices are and are misinformed about what they have to do.”
Not everyone has a concept of what advance directives are, say both Yongue and Clement, and those who do often face vague definitions and requirements. Standards vary from state to state, and in most states, directives may be approached in different ways.
In North Carolina, state-issued forms exist (see “More Info”), but directives can also be established through other written or spoken communication. “Even a very simple expression of your wishes has to be taken into consideration by your doctor,” Clement explains. “If you were to Google ‘North Carolina advance directives,’ you would find a handful of forms, but none of them would be actually required.”
One person’s directives might consist of a heartfelt set of written wishes accompanied by a comprehensive set of documents, while another may choose to check boxes on a form.
Yongue teaches advance-directive workshops that allow plenty of room for spirituality and reflection, too. “We break a nine-hour class into three sessions. We can’t do it all in one day because it’s too much,” she says. “What does it mean to have a health care agent? What does it mean to have a living will?” Yongue continues.
Answering such questions isn’t easy, she says, and in the process, “What arises are people’s fears, their beliefs, their postures.”
Clement says she often adds advance directives when making a client’s will. “Otherwise, people don’t think about it and would never do it on their own,” she says. But the extra effort might go a long way.
Even when advance directives exist, they are rendered useless when not communicated properly.
An individual may express a desire for a natural death on paper but not tell family and friends. Unaware of the documentation, they’re left to guess the incapacitated person’s wishes. Clement advises, “Best-case scenario, you have the written document, you’ve [also] had ongoing verbal conversations with your doctor, and your friends and family know what’s going on.”
Out-of-date directives can also be a common problem. Often created at the same time as a will (or after a diagnosis or other catastrophic event), the instructions may be forgotten by the time they’re needed. Yongue suggests, “I think they should teach advance directives in high school. … And you should revisit them every year during your birthday month. ”
Improvements to come?
The 2010 Patient Protection and Affordable Care Act originally included a provision for paying doctors to dispense advice on end-of-life planning. But then-Alaska Gov. Sarah Palin and others claimed that such counseling would create “death panels” — a bureaucratic rationing of health care by the U.S. government. Federal funding for medical advice on advance directives lost momentum as a result of political pressure by opponents.
“If you’re going to receive Medicare funding, you’ve got to have a written protocol in place for seeing if patients have advance directives in place, and then following them,” says Clement, citing federal law.
But the law doesn’t require patients to prepare advance directives, nor does it provide funding for advance directive counseling. Some private health insurers have started reimbursing patients who seek assistance in end-of-life planning, but this practice is far from widespread.
The proposed Care Planning Act (S. 1549), a bipartisan bill sponsored by Sens. Mark Warner, D-Va., and Johnny Isakson, R-Ga., would extend Medicare coverage to include advance-directive planning and require that the contents of the directives be featured prominently in a patient’s medical record. The bill would also give patients an option to sign a “portable treatment order” requiring Medicare-certified providers to comply with the order in any care setting. This could prevent patients from receiving unwanted life-prolonging care in their home only to later be brought to a hospital against their wishes.
“Of course, it would be a good idea for Medicare to cover advance-directive planning,” says Yongue. “Then more people would have them, and more people would have a good death.”
At sosnc.gov/ahcdr, the N. C. secretary of state offers free forms that meet the legal requirements for several kinds of advance directives, as well as a state-administered Advance Healthcare Directive Registry. While not necessary for creating effective directives, they help establish a framework for communicating one’s desires.
These forms include:
- Health care power of attorney, in which you designate another individual as a health care agent when you cannot make decisions on your own.
- Living will, which lets you identify the situations in which you would prefer not to receive life-prolonging measures like feeding tubes, hydration and ventilation.
- Advance instruction for mental health treatment, which identifies which mental health treatments you would consent to and which you would refuse.
The Advance Healthcare Directive Registry is an online lockbox for storing advance-directive documents that can be made available to health care personnel and family members. Full instructions for using the registry are at sosnc.gov/ahcdr.
Use of the registry does not bypass the need to make directive documents accessible elsewhere. Third parties, such as health care providers and family members, cannot view documents in it without a state-assigned file number and password. Only the author of the directives can choose whether to share this requisite access information.
It is not legally necessary to have professional help completing advance directives, but it could help clarify a nebulous process and foster improved communication by facilitating discussion of end-of-life matters.
CEOLT offers advance directive workshops in Western North Carolina; class descriptions are at ceolt.org/events/advanced-care-and-after-death-care-directives. Alternatively, individuals can consult an attorney who specializes in estate planning or health care law, or ask their primary care physician for more information.