Charting Your Course

Making sure people know your end-of-life wishes can prevent misunderstandings. Here’s what you need to know about living wills.

Dr. Ercilia Arias is a critical-care physician and chairwoman of the bioethics committee at Beebe Medical Center in Lewes. photograph by Tom NutterIf you’ve checked into the hospital, you’ve been asked whether you have an advance directive, a document that explains your wishes if you can’t make medical decisions for yourself.

And if you’re like most people, you probably answered no. Advance directives are just for the elderly or chronically ill, right?

Wrong. If you’re old enough to vote, you’re old enough to need an advance directive. Catastrophic medical events happen. Would your loved ones know what you would want if you were too ill or injured to express your wishes?

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A 2009 survey by the Pew Research Center revealed that though more than half of Americans said they would elect to stop medical treatment if suffering from a terminal illness, only 29 percent reported having an advance directive.

“People just don’t like to think about end-of-life until it’s upon them,” says Dr. Daniel L. DePietropaolo, national medical director for Compassionate Care Hospice. “Most people find it an unpleasant thing to talk about.”

Over the past three decades, all 50 states and the District of Columbia have legalized living wills, healthcare proxies and-or the durable power of attorney. Delaware did so in 1996. The federal government validated such laws through the 1991 Patient Self-Determination Act, which requires hospitals, nursing homes, home health agencies and most other healthcare institutions to ask patients, when they are admitted, if they have an advance directive.

Two legal forms make up an advance directive: the living will, and a durable or medical power of attorney. The living will is the document that spells out the types of medical treatments and life-sustaining measures you do and do not want, such as mechanical ventilation, resuscitation, nutritional and hydration assistance, and dialysis.

These technologies that allow life to be prolonged beyond any hope of recovery have made advance directives necessary.

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“Prior to 1958 or 1960, the medical means to keep people alive with terminal illness didn’t exist,” says DePietropaolo. “If you had a massive stroke and couldn’t wake up, couldn’t eat, your family sat by your bedside, prayed with you, held your hand until you passed on.”

Determining the treatments you would and would not want involves thinking about your values, such as the importance of being independent and self-sufficient and what conditions you feel would make life not worth living.

Consequently, you must understand the risks and benefits of each treatment. Television dramas portray cardiopulmonary resuscitation as the ultimate lifesaver, but when a person is in failing health, it is rarely successful. Moreover, if a heartbeat is restored, but the patient is too weak to breathe on his own, he may wind up on a ventilator for days, weeks or months. Brain damage can also occur if the brain is deprived of oxygen before resuscitation.

Similarly, artificial nutrition and hydration is not recommended for those in the final stages of an illness. Tube feeding can prolong the dying process by delaying the onset of a peaceful coma. In addition, secretions caused by the intake of fluid can bring on coughing and shortness of breath.

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“We as human beings can’t conceive that we cannot feed or hydrate, but the patient is in a state where they cannot perceive that,” says Dr. Ercilia Arias, critical-care physician and chairwoman of the bioethics committee at Beebe Medical Center in Lewes. “It’s not accomplishing anything except to appease somebody else’s mind.”

No matter your preferences, experts recommend that you revise your document periodically to reflect changing attitudes and circumstances.

“Opinions change,” says Dr. Andrew L. Himelstein, oncologist and medical director of Delaware Hospice. “If you are facing an illness, your thoughts on a particular approach may be different from what they were 10 years ago, when you were well. Circumstances change. Treatments change. So it’s a snapshot in time that can be updated.”

Designating a person to act as your healthcare agent is arguably the most important part of end-of-life planning. It does not necessarily have to be a family member or even someone who lives nearby. But you do need to select someone who is comfortable with candid conversations, understands and shares your values, and will act in accordance with them.

“Ideally, the surrogate and the person who’s written the advance directive should sit down and discuss what the wishes are,” says Himelstein. “A good time to do that is when the advance directive is written.”

Designating a healthcare proxy, while not mandatory in Delaware, is especially important for those with no immediate family or who are together without the legal benefits of marriage or a civil union.

“If you don’t designate somebody and the need comes up to get a guardian, the courts are going to appoint somebody—perhaps someone other than who you would want,” says David J. Ferry, Jr., a Wilmington attorney who specializes in elder law.

As of January 1, 2012, new legislation goes into effect concerning same-sex couples who have had a civil union in Delaware or have had a marriage or similar union performed in another jurisdiction (another state or country). The couples will have equal protection under Delaware law as does now a married heterosexual couple.

With so much in the news about our aging population and end-of-life issues, people are beginning to value a good death as much as they value a long life. Indeed, writing down one’s final wishes can restore a sense of control that illness often takes away, Arias says.

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Communicating one’s wishes and choosing a surrogate to carry them out before a crisis occurs also takes the burden off the family, decreasing the potential for ethical dilemmas and conflict.

“It saves a lot of fights at the ICU door,” says DePietropaolo, who helped craft the 1996 legislation governing advance directives in Delaware.

It is critical to keep in mind that an advance directive does not guarantee that your wishes will always be followed. Interpretations about what constitutes a vegetative or terminal state or even competency can vary among healthcare providers, says Ferry.

“It brings in the emotional and spiritual side of this transition that we all will face in life,” says the Reverend Timothy D. Rodden, director of pastoral services at Christiana Care Health System. “Never pass up an opportunity to have a conversation.”

Moreover, healthcare providers are not always aware that an advance directive has been completed. Even if there is an advance directive, it may not appear in the medical record.

“A lot of times the patient has an advance directive, but we don’t see it for days,” says Arias.

Problems can also arise from paperwork snafus that occur when the patient is transferred to another medical facility.

Delaware recently established the Medical Orders for Life-Sustaining Treatment initiative. The document translates the wishes expressed in the advance directive into actionable medical orders that follow the patient through all healthcare settings.

The advance directive remains an important legal tool for people to state their preferences and to designate a surrogate decision-maker in the event they become unable to speak for themselves.

“The court wants to carry out your wishes. Your family wants to carry out your wishes. If you put it in writing, it’s going to be a whole lot easier to do that than if you don’t,” says Ferry.

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