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Sonjia Hauser sees people on their deathbeds nearly every day at Vancouver’s Ray Hickey Hospice House. The worst part about her job isn’t death; it’s witnessing families fighting over whether to continue to sustain a loved one’s life when the loved one isn’t expected to recover, Hauser says.
“We had one family member ask us what it felt like to be murderers,” Hauser says.
The family member wanted to keep his mother alive on a feeding tube after a massive stroke. His wishes were overridden by two other siblings who thought their mother wouldn’t want to live with severe brain damage. The feeding tube was removed, and their mother was moved to the hospice center to die. As she slipped away, the family fought bitterly.
“Occasionally, people like Terri Schiavo and Nancy Cruzan make headlines. What people don’t know is this happens every day,” Hauser says. “It’s a terrible place for everyone to be. It hurts relationships. I wonder sometimes if families ever recover from this.”
Advance directives can spare your family from the guilt and agony of making your end-of-life decisions and can help protect you from being victimized, Hauser says. They include power of attorney, do-not-resuscitate orders, living wills and last will and testament. Living wills, also known as health care directives, spell out your wishes about whether to continue life support once your doctor and another health care professional decide your death is imminent or you are in a coma or a vegetative state from which you are not expected to recover. Power of attorney is granted to a person you designate to carry out your instructions and make health and/or financial decisions in case you are incapacitated, by dementia, for example.
“It’s amazing how many families have never had this discussion and how many don’t have a clue what grandma or grandpa wanted,” Hauser says. “It’s a common occurrence, but it can be devastating.”
About 36 percent of those 35 and older have a living will, according to a 2008 AARP survey of 1,013 adults in that age range.
People avoid the topic because they don’t want to consider the worst, says Mary Catherine Lookingbill, chaplain at PeaceHealth Southwest Medical Center.
“We don’t talk to each other about how we want to die,” Lookingbill says. “We assume we are going to live and not suffer very much.”
“It resembles the sex talk,” she says. “It’s the Big D talk. Nobody wants to talk about it.”
Looking at advance directives as a gift to oneself and the family can help change that negative perception, she says.
Vancouver gerontologist Gail Haskett recommends that people begin making advance directives when they are young and update them every two years. Making the task a routine part of life, similar to renewing your vehicle insurance, also helps to erode the negative connotation, Haskett says.
Advance directive forms are available online and at local hospitals free of charge. PeaceHealth Southwest Medical Center offers a booklet on advance directives called “Five Wishes.” The booklet was developed by the Aging with Dignity nonprofit group. It includes forms, instructions and a card you can place in your wallet that tells health care providers where your advance directives are filed. The forms should be signed by you and two witnesses.
They can be filed in a fee-based national living will registry, which any doctor in the country can look up. An alternative is to file them at your hospital or with your other important documents. It’s critical that you tell your wishes to your family and let them know where they can find your advance directives in case something happens to you, Haskett says.
Vancouver resident Jack Johnson says he posts his on his refrigerator, so if emergency responders ever have to come for him at his home, they’ll know what to do.
The state Department of Health used to maintain a free-of-charge living will registry where health care providers could look up patients’ advance directives. The registry was discontinued in June due to budget reductions. About 2,443 residents registered between November 2007, when the registry started, and June, said Donn Moyer, the department’s media relations manager. They were given free accounts at U.S. Living Will Registry. Registration at the U.S. site typically costs $59, according to the registry’s website.
While advance health care directives can be completed on your own, experts recommend obtaining an attorney to appoint someone to handle your affairs. This document on power of attorney is important if you become incapacitated and cannot make your own health care and financial decisions, said Dan Marsh, a Vancouver attorney. Without it, your family won’t have access to your medical information, cannot make medical decisions for you and cannot pay your bills. The decision about who will have power of attorney will be left to the court system. The courts could appoint someone you don’t want to make decisions for you, Haskett says.
Marsh recommends that people choose separate individuals to serve as their health care power of attorney and financial power of attorney. Neither has to be an actual attorney.
“Not everybody helping with your medical problems needs to know your financial affairs,” Marsh says. About $125 in legal fees would be a reasonable price to establish power of attorney, if you’ve already decided whom to designate and have all the needed information available, he says. If you’re indecisive or unorganized, the fee could be higher, he says. Some attorneys will offer discounts if you complete all of your end-of-life documents at the same time, including a will, power of attorney and other documents.
Regularly updating advance directives is important because life conditions change. You might have named your spouse as your agent to have power of attorney, but later on, your spouse may not be in a condition to make decisions for you, Haskett says.
Advance directives also are a precaution against being taken advantage of if you are incapacitated, Haskett says.
Haskett says she remembers a case when a nephew sold off the assets of his aunt and uncle, who had dementia, to buy his own family a house in Virginia. He put his uncle and his uncle’s disabled son in an institution. That’s why it’s important to ensure that your power of attorney is someone you can trust, she says.
Hauser’s experience seeing families at odds over end-of-life choices prompted her to pass out advance directive forms to all of her family members older than 18. She says she kept after them until they completed the forms. She asks them to update the advance directives each year on their birthdays.
“Your advance directives are a gift you give to family that takes away the guilt involved from stopping treatment or never starting treatment,” Hauser says. “It makes the decision much simpler: Do we go with mom’s wishes or do we go against them?”