September 30, 2015

Advance Directives: One More Time

Last week, I ran a series of posts about advance directives... the documents that clarify and formalize what I want – and don’t want – when I can no longer make healthcare decisions myself.

It is hard to describe the peace of mind that comes with knowing that my family, key providers, and healthcare proxy understand my wishes.

Still, there are millions of Americans who cannot know that peace of mind, because they haven’t taken the fairly simple steps involved to complete the documents – 1) a living will and 2) a power of attorney / healthcare proxy.

Maybe some of those people really haven’t given any thought to the Final Things. But I suspect most of the unprepared are simply uncomfortable addressing their own last days and/or initiating the difficult discussions with families, friends, and doctors.

I’d be much more uncomfortable thinking I was leaving my nearest and dearest to fend for themselves when the time comes… subjecting them to indescribable emotional (and financial) distress.

I don’t give advice on this blog; it’s a decision I made at the start. But I don’t mind offering this recommendation: if you don’t have an advance directive in place, think about doing it soon.

There are many online resources to help. If you search “advance directives,” many links appear. Here is just one, from AARP: Advance Directives: Creating a Living Will and Health Care Power of Attorney.

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After my posts last week about advance directives, I was intrigued to see a piece by Paula Span in The New York Times’ “The New Old Age” (a blog feature I regularly enjoy) titled Near the End, It’s Best to Be ‘Friended’.  

I hope running it here underscores the importance of getting the documents in place. The very last line in this story – uttered by its 88-year-old protagonist -- says it all: “I should have done it yesterday.”

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The unconscious man in his 90s was brought to an emergency room where Dr. Douglas White was a critical care physician. The staff couldn’t find any relatives to make medical decisions on his behalf.

“He had outlived all his family,” recalled Dr. White, who now directs an ethics program at the University of Pittsburgh Medical Center. “We were unable to locate any friends. We even sent the police to knock on his neighbors’ doors.” 

Nobody could find an advance directive, either. In the end, the hospital’s ethics committee had to help guide the medical team to decisions about continuing life support.

Experts describe patients like this one as “unbefriended.” But you can also be unbefriended, even if you do have friends and family, if you are incapacitated and haven’t appointed someone you trust as a health care proxy.

You’d hardly call Elizabeth Evans incapable of decision making at this point — or friendless. A longtime volunteer, she likes reading and gardening and can manage the five-minute drive to the supermarket. Nearly 89 and using a walker, she still lives in her ranch house in Pittsburgh. Slowly, she is recovering from the death of her husband, Jerome, last year.

That trauma left Mrs. Evans with clear convictions about her own end-of-life decisions. “After watching my husband on life support, with everything they do to you, I wouldn’t ask for that,” she said. “It was horrible. I’d like to peacefully close my eyes."

But if Mrs. Evans cannot voice her wishes during a health crisis, who will speak for her? The couple had no children. Her brother, who lives an hour away, is 97; her younger sister lives in Virginia. Of her close-knit group of four local friends, two have died.

“I’m not the kind of person who worries about something before it happens,” Mrs. Evans said. So although her doctor has given her an advance directive form to fill out, she hasn’t yet. Nor has she talked to her sister or her friends about her wishes.

During a telephone interview, she mused about asking her lawyer or trusted physicians to serve as surrogates. But in Pennsylvania, as in many states, the law bars your health care provider from that role.

If Mrs. Evans were to become disoriented in an emergency room, social workers might be left scrambling to find her relatives. A hospital staff considers someone unbefriended if family members aren’t available to make decisions.

Lots of people already fall into this troubling category. Sixteen percent of intensive care unit patients in one West Coast hospital were unbefriended, according to a 2007 study for which Dr. White was a co-author. Another of his studies reported that of I.C.U. patients who died, 5.5 percent were unbefriended or — some ethicists find this a more precise, less stigmatizing term — unrepresented.

The numbers are likely to increase as so much of the population ages, in part because dementia rates rise with age. “We saw a growing pattern: More and more patients who lacked decision-making capacity, had no available surrogates and had not completed an advance directive,” said Martin Smith, director of clinical ethics at the Cleveland Clinic.

The kinds of unrepresented elders might change, too. In the past, many were marginalized — homeless, addicted, mentally ill, estranged. Baby boomers, with higher rates of childlessness and divorce, have smaller and more mobile families, and longer life spans. “They could live a largely mainstream life, but outlive everyone around them,” Dr. White said.

Hospitals, public agencies, researchers and legislators have been grappling with this issue, though not quickly enough, and are coming up with a variety of fixes. States are broadening their default surrogate consent laws, for example.

In most states, statutes specify which relatives can consent to medical procedures, or decline them, for a patient who hasn’t appointed a decision maker: spouses first, usually followed by siblings and adult children.

Twenty-four states and the District of Columbia have added “close friend” to that list, according to the American Bar Association Commission on Law and Aging; some states also include aunts and uncles, nieces and nephews, and adult grandchildren. A member of the clergy can serve in that role in Texas. The wider the net, the reasoning goes, the greater the likelihood of finding someone authorized to make decisions. Legalized same-sex marriages also mean fewer unrepresented gay and lesbian older adults.

Still, hospital and nursing home staffs are often left wondering which treatments unrepresented patients would consent to, and may overtreat or undertreat them as a result. So more institutions are developing policies for such cases. (In emergencies, physicians have “implied consent” and don’t require a surrogate’s participation.)

Without guidelines, “health care providers just make the decisions themselves,” said Thaddeus Pope, director of the Health Law Institute at the Hamline University School of Law in Minnesota. “The problem is, we know that doctors have all sorts of biases, everything from race to socioeconomic factors to their own treatment preferences.” They might also feel economic pressures, he added.

The Cleveland Clinic has adopted protocols that provide more oversight as the medical decisions for an unbefriended patient grow more serious. For a procedure that ordinarily requires informed consent — a transfusion or surgery, for example — the attending physician, a second staff physician and a staff ethicist must all agree that it’s in the patient’s best interest.

The same applies for decisions about do-not-resuscitate orders. Judgments about withdrawing life-sustaining treatment require two staff physicians’ agreement and a subcommittee of the hospital ethics committee to review the decision.

Since the policy took effect in 2009, Dr. Smith said, the ethics department has consulted on more than 100 cases involving unbefriended patients.

In most states, a court can appoint a public guardian for an unrepresented patient, but the process takes weeks and these programs are hampered by inadequate budgets. They are widely considered unsuitable for timely health care decisions.

In Indianapolis, therefore, the Center for At-Risk Elders, a nonprofit legal advocacy group, trains volunteers — social workers, lawyers, retired nurses, medical and law students — to serve as guardians who make health care decisions for the unbefriended.

The volunteers sometimes follow patients for years. Since 2013, the group has taken on 186 cases, but “the demand for our services is outpacing our ability to recruit and train them,” said the center’s director, Ken Bennett.

Let’s acknowledge that of all the fates an unrepresented person fears, what happens in an I.C.U. may matter far less than the years leading up to that point. In a society so reliant on family caregivers, who will supply the everyday help that most older adults eventually need if they have no relatives? That question, readers tell me, keeps them awake at night.

But where health care is concerned, people can recognize that they are headed toward unbefriended status if they lack a close family member to represent them (or a family member they want to represent them). They can take preventive steps, enlisting friends or more distant relations as surrogates. If they can afford it, they can turn to lawyers, geriatric care managers or professional guardians. A few innovators have experimented with care committees composed of trusted associates and professionals.

They can explain their beliefs and wishes to these surrogates, paid or unpaid, and document their preferences in very detailed advance directives. “They provide clues to what the patient really values, some guidance to what circumstances they think are worse than death,” Dr. White said.

That, Elizabeth Evans decided in the course of our conversation, represents her best bet: writing a directive and having frank conversations with her sister, and perhaps her lawyer.

"You think nothing’s going to happen to you, and then you realize it can,” she said. “I should have done it yesterday.”

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