At 26, Cara Hernandez has her untimely death about as well-planned as it can be.
It’s all in her advance directive, instructions for family and doctors to follow if an accident or some other catastrophe leaves her in dire condition and unable to make her wishes known.
Keep her on life support for two weeks. If there’s no improvement by then, take her off.
“I thought, ‘Well, it’s emotional on my family and friends, it’s high medical bills, (and) if nothing had worked at that point, what’s to say something will just kick in after that?’ ” said Hernandez, of Spokane. “And I guess I’m just really fearful of being on a ventilator and nutrition tube for three months. That just sounds horrible.”
But she knows, really, that you can’t plan a catastrophe. Maybe, in Hernandez’s case, that two-week limit will be helpful. It’s likely, though, that an accident or a serious undiagnosed illness would create questions she can’t anticipate. That’s why Hernandez also designated a cousin as her surrogate – someone she trusts to consider her values and preferences in making any tough calls if she’s unable to make her own medical decisions.
Many advance directives have evolved with the unknown in mind, with advocates for the elderly – and others seeking control over their care – urging families to expand “end of life” discussions to include patients’ values and general preferences. They’re hoping more in-depth conversations about what’s really important to patients, along with careful selection of surrogate decision-makers, will mean people’s wishes are enacted before their deaths.
“The document can only say so much,” said Lynn St. Louis, a Spokane attorney who specializes in elder law.
Early versions of living wills didn’t ask questions or offer options, but were statements you’d sign stating you didn’t want life support or “extraordinary measures,” said Paul Malley, president of Aging With Dignity, a national nonprofit organization based in Florida.
They progressed to documents that offered a few options, he said: “If you’re terminally ill, would you want to be on a ventilator? Yes or no.”
Those questions can be hard to answer when you consider the myriad circumstances a terminally ill patient might be living with. For many people, the answer would be: It depends.
Advance directives are different from “do not resuscitate” orders, which can be written by doctors at a patient’s request when a patient who is expected to die soon collapses, for example, and stands to otherwise receive CPR or some other life-saving care. In Washington, such orders can be made on a POLST, or Physician Orders for Life-Sustaining Treatment, form. Idaho uses Physician Orders for Scope of Treatment form.
Many advance directive documents are available from state agencies, lawyers and advocacy groups. They can be as simple or as detailed as you want.
The nonprofit organization Aging With Dignity created a popular one called Five Wishes, so far distributing 19 million copies in the U.S. and other countries. The document addresses medical and legal concerns in plain language, as well as comfort, pain management, family and spirituality, among others, to guide designated surrogates and others in making decisions in line with the patient’s values. It meets legal requirements in 42 states, including Washington and Idaho, but is also designed to spark in-depth conversations among families and friends.
The project stemmed from a gap between what patients viewed as important and what health care providers and lawyers tended to focus on, Malley said.
“People were saying they wanted to be at home, they wanted to be kept comfortable, they wanted their human dignity to be honored and respected. They wanted to have their family with them, they wanted to have people praying for them to have their spiritual needs addressed,” Malley said. “And then we looked at the medical system that so often treats dying as just a medical moment and puts the focus just on questions about feeding tubes and ventilators and health care agents.”
If living wills used to ask whether you want to be on a ventilator, Malley said, Five Wishes asks: “What does good care mean to you? How can your family and your health care providers respect your human dignity at the end of your life?”
Power to the patients
Only about a quarter of Americans have created advance directives, said Nathan Kottkamp, a Virginia attorney and founder of National Healthcare Decisions Day, based in Richmond, Va.
That’s despite high-profile cases that highlighted the heartbreak when patients are terminal or in a “persistently vegetative” state. Think Karen Ann Quinlan, Terri Schiavo or Nancy Cruzan, the center of a 1990 Supreme Court case that preceded the federal Patient Self Determination Act.
The act requires all health care facilities that receive Medicare and Medicaid money to inform patients about their rights to make their own medical decisions, including the right to accept or refuse treatment. Health care facilities are also required to tell patients about their rights to create advance directives.
The need for advance directives has grown along with doctors’ ability to keep very sick patients alive for much longer than they used to. Thanks to advances in medicine and technology, the question of life or death is more and more often decided by humans.
Of all the people potentially involved – doctors, relatives, lawyers – advance directives seek to put control in the hands of patients. In general, advance directives have two parts: Living wills define what kind of medical treatment, if any, you want to extend your life if you can’t communicate your wishes. They apply only when you’re near death. A “durable power of attorney for health care” is a document that lets you designate a person – a surrogate, or proxy – to make medical decisions on your behalf if you can’t communicate.
A 2010 study published the New England Journal of Medicine found that 43 percent of elderly Americans needed someone to make a decision about their end-of-life care. Of those, 70 percent lacked the capacity to make the decisions themselves.
However, 68 percent of the people who required decision-making and couldn’t do it themselves had advance directives in place. Of this group, 83 percent who wanted “limited care” and 97 percent who wanted “comfort care” got what they wanted.
Of the few people who wanted “all care possible,” half got what they wanted. But that half was more likely to get care consistent with their preferences than those who wanted all care possible but didn’t have advance directives.
The study, conducted by researchers at the University of Michigan, used data from interviews of the adult children, spouses or other relatives of 3,746 people 60 and older who’d died from 2000 to 2006.
Choosing a surrogate
When advance directives don’t work – when people’s wishes aren’t honored – it’s usually because they’ve chosen the wrong surrogate, said St. Louis, the Spokane elder law attorney.
“That person can’t, or won’t, let go,” she said.
Her firm’s advance directive documents aim to address potential conflicts between a patient’s documented wishes and decisions made by their surrogate by giving the surrogate the final say. And if a client says, instead, they want their written directive to prevail, St. Louis suggests choosing a surrogate they trust more.
The best surrogate isn’t necessarily your closest relative.
“It really has to be somebody that has the ability to take their own emotions … out of it, to say, ‘This is what my loved one would want,’ ” St. Louis said. “ ‘It might not be what I would have done, but I know I’m going to honor their wishes. I’m going to speak for them.’ ”
Elder law attorney Larry Weiser is an associate professor at Gonzaga University’s School of Law and director of the school’s Clinical Law Programs, which include a free legal clinic for low-income seniors.
His clinic advises clients to choose surrogates they trust and who are willing to do the job. Clients should relate their preferences and values to any potential proxies and determine whether they’re willing to interpret them according to unanticipated situations.
Advance directives are like other legal documents, in that there’s a chance they might not be honored, Weiser said. But usually they work.
“You sign a will, there is a chance that somebody’s going to dispute it. You sign a contract for a business, it could be breached,” Weiser said. “But most of the time – other than when there’s a real dispute – it really is a beneficial document to take the burden off the family members. It’s a direction.”
And patients can verbally revoke their own advance directive as long as they’re able.
While advance directives are most often created to limit care, some people use them to emphasize their desire to live as long as possible, said Kottkamp, of National Healthcare Decisions Day.
“The reality is,” he said, “some people use advance directives to say the kinds of care they do want or to say affirmatively, ‘Yes, I want everything that medical technology can thrust on me until my body just can’t take it anymore.’ ”
Hernandez, the 26-year-old social worker, said she has encouraged her grandparents and parents, along with her clients at Elder Services, to create their own advance directives. She raises the topic among people her own age, too.
“We could all have something happen to us at any given time,” she said.
She’ll update it as her life changes – when she marries and has children and as she ages. “Maybe once I’m 50 or 60, I’ll say, ‘Don’t give up on me too soon,’ maybe I’ll say, ‘Keep me on it for a month or so.’ Or maybe I’ll say, ‘I don’t want to do that to my children, don’t keep me on it at all.’ ”
While she thinks denial and fear may stop some people from creating advance directives, the documents can help prevent turmoil and blame among families.
“It’s helpful to the adult children to have it done,” Hernandez said. “It takes some of the emotion out of it, because you know that you’re not the one making that split-second decision. You don’t have to live with guilt, if you ‘pull the plug,’ (if) your parent or loved one has already told you, ‘Yes, I want this done’ or ‘Please don’t do it.’ ”