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.
Aileen Eguia-Holgado, 36, cardiopulmonary manager at Hampton Roads Specialty Hospital in Newport News, and her husband, Tim, recently did just that before taking a vacation to the Philippines, where Holgado grew up. "Everything has been documented, so there is no dispute and no questions for my family and relatives who all live in the Philippines, if something happens to me in the future," she wrote in an email. On their vacation, she explained the document to her family and left them a copy. "They were shocked and not ready to hear it. It was traumatic and dramatic. We were all crying," she said. However, she was determined to convey her wishes, despite their opposition, because of the geographical distance. "I'm thousands and thousands of miles away. I put in plain words that all the medical decisions are written in my living will, and not to blame my husband (her agent) with my decision."
An advance directive, which can be downloaded from the Internet, has legal standing without notarization when signed by the patient and two adult witnesses. It's not necessary to have the input of a medical professional, though increasingly, health systems are offering patients the assistance of trained, certified facilitators. "We've moved away from the idea that anyone can help you," said Cochran. Sentara selects certain staff members for training in the long-established "Respecting Choices" program of the Gundersen Lutheran Medical Foundation.
The form is typically a broad statement of wishes rather than treatment-specific and is therefore open to interpretation by both physicians and family. "It's up to the physician to translate that directive into a medical order," said Cochran. "Even then a DDNR (durable do not resuscitate) order only covers resuscitation." That's why the experts emphasize the importance of "the conversation" and choosing an agent carefully.
Though individuals can upload the completed form to Virginia's free registry, hospitals need a person's code for access, which is not practical in an emergency, said both Wilson and Cochran. Copies need to be readily available and should be distributed to an individual's primary care doctor, close family members and designated agent. Individuals should carry a wallet card with their emergency information.
Wilson recommends that the document be reviewed and updated regularly, particularly after a chronic condition emerges, when more detailed information should be included. For someone at high risk for stroke, for example, a physician can help by telling them various ways it might affect them, so that they can tell their family in advance exactly what they want and don't want in terms of treatment.
The area's three major health systems in Hampton Roads offer various options for advance care planning. Riverside answers questions and will supply an Advance Care Planning workbook by mail; call 757-856-7030 or toll free 877-287-6061. Sentara has an Advance Directive and Registration Agreement online and files directives at no charge with the U.S. Living Will Registry, http://www.uslivingwillregistry.com, as a community service. (For it to be registered, you must complete both the directive and the registry authorization. It takes from two to four weeks to process and the individual then receives a card to keep in their wallet.) Forms can be mailed to the Sentara Center for Healthcare Ethics, 600 Gresham Drive, Norfolk, VA 23507, or call 757-388-4263. Bon Secours offers medical planning services through its Spiritual Care Department, http://www.bonsecourshamptonroads.com/our-services-spiritual-care.html.
There are many different documents/terms involved with advance medical planning. Here are the most commonly used:
• Advance medical directive/living will/medical power of attorney are often used interchangeably; they constitute a statement of wishes and are only formalized through a doctor's orders;
• DDNR, Durable Do Not Resuscitate Order — part of Virginia Code, #54-1-2987; signed by a doctor, this is a portable document honored by EMS, who otherwise will resuscitate by default. The physician and patient always have the option to rescind an order;
• Emergency Medical Services, EMS — their orders are to resuscitate unless there is a DDNR or POST form;
• Living Will – this is one part of an advance medical directive.
• Mental health advance directive — also known as PAD, psychiatric advance directive, it allows individuals to include preferences for medication, restraint, seclusion, hospitalization and alternatives in the event of a psychiatric emergency.
• POST, Physician Orders for Scope of Treatment – orders signed by a physician; covers not just resuscitation, but all other treatments, such as dialysis. This is a pilot program in Virginia and is not available everywhere.
• Ulysses clause — part of a mental health advance directive that empowers a designated agent to override a person's wishes regarding treatment during a psychiatric emergency.
Part One: Advance medical planning is for everyone
Part Two: Advance mental health directives promise better psychiatric care during crises
Part Three: Detailed advance planning for the final year of life allows patients to direct treatment
Part Four: Health columnist finds out what's involved in filling out and registering an advance directive