No one in Nevada is a bigger advocate of end-of-life planning than Dr. Michael Karagiozis, medical director of Nathan Adelson Hospice. The hospice and palliative care specialist believes everyone should have a living will.
Karagiozis, however, knows the reluctance people have about establishing guidelines for what treatments you want when you’re near death. He couldn’t even persuade two of the people closest to him to put advance medical directives in place.
About one in four Americans has completed an advance directive, legal documents that specify the medical care you want in case you aren’t able to detail that later because of terminal illness, serious injury, coma or the late stages of dementia. Online tools have made the process easier for designating a durable power of attorney for health care to help guide family, friends and health care providers if you become incapacitated.
“If you have advanced directives, it’s a gift to everyone,” said Gretchen Papez, spokeswoman for the Valley Health System. “It spells out exactly what should be done and what should not be done.”
Researchers have shown that people with advance directives have a lower likelihood of dying in a hospital and a higher use of hospice care.
Advance directives include:
Living wills: A document that allows a person to detail what treatments they would or would not want when facing a medical crisis.
Do not resuscitate orders: Widely referred to as DNRs by medical professionals, the orders mean a patient does not want CPR or to be put on a machine in case the heart stops or breathing ceases.
Durable powers of attorney for health care decisions: This order designates a person to speak on a patient’s behalf when the patient becomes incapacitated and unable to speak.
Ellie Powell, the clinical nurse ethicist for the Valley Health System, urges anyone considering a health care agent or proxy to pick a person capable of making tough choices because following through on end-of-life decisions can be difficult when loved ones disagree. Whether you choose a family member, close friend, minister, priest, or rabbi, you must choose a person who knows your treatment wishes and is willing to carry them out, Powell said.
“If you’re going to have a durable power of attorney for health care or living will and you choose someone to make those decisions for you, you must make sure you have someone who’s going to ensure your wishes are followed,” Powell said.
That person might not be a spouse or other loved one who might be reluctant to follow your wishes if you don’t want to have a feeding tube and other life-sustaining care. Powell said loved ones picked as health care proxies sometimes are reluctant to stop treatment even if the patient’s health does not improve, a provision often included in living wills.
Advance directives also can take pressure off loved ones who must decide whether to continue aggressive treatments that might not have much chance of reversing a patient’s condition.
“It’s a horrible burden,” Karagiozis said of making the decision to end life-sustaining measures for a patient with a terminal prognosis. “The guilt burden of turning off that machine is one that your family will carry for life.”
Having an advance directive can help ease that burden, experts say, because the patient’s wishes are clearly defined.
End-of-life planners chose April 16 as National Healthcare Decisions Day to capitalize on the popularity of Benjamin Franklin’s quote about the two certainties in life. Unlike the April 15 deadline, a target date few people miss because of the dreaded acronym IRS, advanced directives can be filed at any time.
The Nevada secretary of state’s office maintains a Living Will Lockbox, a secure approach to ensure that medical wishes are followed, at www.livingwilllockbox.com. Copies of advance directives are kept confidential and are readily available to ensure health care providers follow a patient’s end-of-life wishes.
The forms are available online, but because signatures are required, the completed documents must be mailed, faxed or delivered to the secretary of state’s office. Changes can be made to advance directives, and the process of updating the lockbox is similar to filing for the first time.
In addition to a wealth of information online, hospitals, hospices and the state Department of Health and Human Services have resources available to people who want to get their end-of-life wishes put into a legal form.
Karagiozis, the program director at Nathan Adelson Hospice, speaks frequently about the benefits of advance directives. He counsels organizations about the importance of following end-of-life wishes, but he’s not just a clinician giving advice.
Last year, Karagiozis’ husband, Lance, died after being placed in hospice as his symptoms of a congenital heart disease worsened. Two years ago, his mother, Patricia, needed major heart surgery and entered hospice because her condition was so grave. Six months later, her condition had improved, and she was discharged from hospice. Today, she’s living with Karagiozis’ sister in Oregon.
“Neither of them would fill out advance directives, and they both lived in the same house as me,” Karagiozis said.
Karagiozis often meets people afraid to delineate advance directives or talk to their loved ones about their end-of-life wishes because of fears they’re engaging in a self-fulfilling prophecy. Such attitudes illustrate the misconceptions of advance directives specifically and hospice care in general.
Hospice, he says, is part of the journey.
“People often come in so late that we have no other options than to numb their pain, and they die,” Karagiozis said. “That’s the image people have in their heads of hospice, but it doesn’t have to be that way.
“Palliative medicine is about making patients the best they can be so they can enjoy the rest of their lives.”
Contact Steven Moore at email@example.com or 702-380-4563.