Talk about your medical wishes in advance, Virginia medics urge

The new emphasis on patient-centered care, prompted by the Affordable Care Act, is having a spill-over effect. More and more people are documenting what type of medical care they want and don't want through advance directives.

"I call them life-planning documents. It sounds so much nicer. End-of life documents sound so distressing," said Andy Nea, an attorney with Williams Mullen in Richmond, who provides free advice to qualifying seniors on the Peninsula. "It wasn't raining when Noah built the ark. If you don't have documents that express your wishes, the government does it for you," he said, citing what happens if you die without a will or become incompetent to express your wishes and require a court-appointed guardian. "It may be the last thing you want. To the extent you can drive the bus, you should," he added.

To that end, medical systems across the state are urging adults of all ages to make their wishes known through the appropriate documents. Advance medical directives, which encompass living wills, have been in existence for decades. Recently, they've been joined by an advance medical directive for mental health, and POST, Physician Orders for Scope of Treatment, which is geared to the final year of life. The latter is still in the pilot stage in Virginia and is not yet available everywhere in the state.

Medical professionals emphasize that just as important as the documents themselves is letting family and friends know, without any ambiguity, exactly what your wishes are for how you want to live and die. And that's for all ages, they say, citing accidents and unexpected health issues.

"What's central to the process is the conversation," said family physician Paul Evans. "My job as a physician is more of a coach, to find out what your goals are and how we get you there. It's part of a broader conversation about care and what your values are."

Carol Wilson, director of palliative care and advance care planning for Riverside Health System, breaks down advance planning into three stages: emergency planning for healthy adults; guided planning for people with a progressive illness; and POST for detailed care for an end-stage illness.

For healthy adults

An advance directive, a written blueprint for future medical care, is recommended for every adult. "We're trying to get away from the message that it's for seniors only," said David Cochran, director Sentara Center for Healthcare Ethics. "In the hospital, when you're sick is not the best time to do it."

Kristol Clemens,34, an intensive care nurse for Riverside, and her husband, Brian, are in the process of drawing up a detailed advance directive. She has seen firsthand what can happen in the absence of written directions.

"I'm involved in situations where people have to make decisions to withdraw care … it's heart-breaking to watch them struggle," she said, citing a case in which a patient was intubated against her wishes. "Her family knew she didn't want it, but she didn't have an advance directive. Then they had to make the decision to end care. It put them in a situation and made them feel guilty," she said.

An advance directive doesn't activate until the patient is unable to make his/ her own decisions. Its importance lies in allowing an individual to appoint an agent to express their medical wishes when they're no longer able to do so. Nea recommends giving an agent the broadest possible power. "What you want today may not be what you want tomorrow," he pointed out. "You need to have a very personal discussion so you don't have to change the document."

The forms include a variety of powers that can be ascribed to the agent regarding your health care, sections where you can determine the extent of life-prolonging treatments administered — such as ventilator, tube feeding, kidney dialysis, antibiotics — and a section regarding anatomical gifts. Clemens emphasizes the importance of being specific in the latter section. "I don't want my eyes messed with and I don't want my body donated to science. It's just my personal preference," she said. As a registered organ donor, Clemens says it's essential to specify any such exceptions.

Naming an agent

Nea dismisses the often-complex forms that the state and some hospitals tend to use. "Some forms have lots of options. That's horrible. It doesn't allow you to change your mind. The key is that you trust the person you name and have the frank discussion," he said.

The person must also be able to honor your decisions even if they don't agree with them, said Wilson. "If they can't do that, then someone else might be a better agent," she said.

Cochran cautions that a family member may not be the best person. He suggests that a spouse may become too emotionally involved to abide by your wishes when faced by very difficult medical decisions. For himself, he has named his best friend from college in a reciprocal arrangement. "He'll sit down and have a real-time conversation with a doctor based on medical evidence and my decisions," he said. "I want my family emotionally present." He emphasized that it's an individual choice and he would never tell someone whom to pick, though many feel pressured to pick a spouse or child. "When we talk to folks, we put that out there that there's nothing wrong with not picking your family," he said. From a practical standpoint, an agent also has to live nearby in order to be physically available when called upon.

Why an advance directive?

With HIPAA regulations, the privacy laws in effect since 1996, it's even more important to have a formal document that allows a trusted person access to your health status, said Nea. It's also essential for same-sex partners, who in the absence of an advance directive are not included in the list of default legal surrogates.

These start with a spouse, and Clemens cautions that even if you're separated and have been for years, the ex is considered first in the pecking order of next-of-kin. She witnessed such a situation that ended in a legal battle over care between an estranged spouse and the patient's mother. "How sad is that, because someone didn't have an advance directive?"

In his pro bono work for seniors, Nea draws up three documents: simple wills, advance medical directives, and a durable power of attorney. "I recommend that you get all three," he said.