NORMAL - We will die. It's likely that we will have little to no say over when we die. The good news is we may have some say over how.

"The time to begin end-of-life planning is now," said Laura Baker, a social worker with OSF Home Care in Bloomington.

End-of-life planning is growing in Central Illinois. But not enough people complete advanced directives, which may include a health care power of attorney and a living will.

Completing those documents - and discussing your wishes with your family and your doctor - can ensure that your wishes are followed and will reduce anxiety on your survivors who otherwise may grapple with what you would have wanted.

"This is the last taboo," said Dick Watts of Normal, a retired Presbyterian minister who helped organize Compassion & Choices of McLean County, a group dedicated to choice in dying.

"Sex is no longer taboo. Dying is. We say 'Let's bring it out of the shadows.'

"As a minister, I spent a lot of time in hospital rooms with people who were dying. I can't think of anyone who was afraid of death. I can think of a lot of people who were afraid of dying."

Dying in pain and not having control over their end-of-life decisions are among the fears of people with terminal illnesses, he said. Some people remember the case of Terri Schiavo, the woman whose dying in 2005 became a national debate when her husband and parents engaged in a court battle over whether she would have wanted to be kept alive artificially.

"People have said 'I don't want that to happen to me. I want to be in charge,'" Watts said.

In addition, aging Baby Boomers are concerned about the end of their lives and the lives of their parents, said Ellen Miller MacCannell, a social worker with BroMenn Hospice, Normal.

"We're getting more phone calls," MacCannell said. Hospice works with patients who have a terminal illness and a life expectancy of six months or less.

Meanwhile, the growing Compassion & Choices group has averaged 40 to 60 people attending its programs, said group president Betty Rademacher of Normal.

"The response has been terrific," said Watts, secretary-treasurer of the group. "People really want this information."

The holiday season may be a good time to begin the discussion of end-of-life planning with family members.

In many families, the holidays are the only time of the year that all the adult siblings are together. It also may be a time when adult children notice that mom or dad has regressed physically or mentally or it may be the first visit since one of the family members was diagnosed with a chronic disease.

Both developments afford the opportunity to bring up the subject of end-of-life planning - not necessarily at the family Christmas dinner but in a quieter time during a holiday visit.

"Maybe the forms don't get filled out but the discussions could begin," MacCannell said.

Tim Leighton, a Bloomington attorney, said some people have told him that beginning the conversation was uncomfortable but a result was that the family became closer.

"I think all adult persons should consider completing advanced directives," said Rademacher, a retired counselor who worked at Illinois State and Illinois Wesleyan universities.

"Many times, people think of death as an old-person issue and it really isn't," she said. Young adults also are vulnerable to accidents and disease.

Leighton said, "We're all going to get hurt and we're all going to die. If we don't do certain things, those life events will become huge burdens on our loved ones."

A good time to begin work on end-of-life planning is whenever a diagnosis is made of a chronic disease - such as heart or lung disease, diabetes or Alzheimer's disease - regardless of the age of the patient, said Barb Toohey, a registered nurse and home health and hospice manager for OSF Home Care, Bloomington.

"Putting your wishes in writing is a comfort to you and a wonderful gift to your family so they're not struggling later to guess what you would have wanted," Rademacher said.

A nationwide Harris Poll a couple of years ago found that 70 percent of Americans would specify no life support but only 34 percent of those polled had a living will, Watts said.

MacCannell recalled an incident a few months ago of a 57-year-old area resident who had not completed advanced directives and never made her end-of-life wishes known. She was in the hospital and couldn't communicate because cancer had affected her brain. Her three children lived out of the Bloomington-Normal area and end-of-life planning for the woman was delayed by a week and a half as the three siblings struggled with whether to battle the cancer or make her comfortable and whether she should be in the hospital, nursing home or home.

When the decision was made to stop aggressive treatment, enter her in hospice and return her to her home, precious time hqad been lost in which the woman could have received hospice services, MacCannell said. The woman died shortly after returning home.

End-of-life planning shouldn't wait for a crisis or major surgery, MacCannell said. "We want to give the patient control and that comes from their advanced directives."

Compassion & Choice of McLean County grew out of a discussion group at New Covenant Community Church in Normal. New Covenant and First Presbyterian Church in Normal are among churches in which Watts served as pastor.

The discussion group heard about Compassion & Choice, a national organization, and, last year, became the first chapter of the organization in Illinois, Rademacher said.

Compassion & Choice encourages people to complete advanced directives, advocates for death with dignity, and offers support to people with a terminal disease.

"People have the right to die without pain, without being lonely and while remaining in control, and that's what this group is about," Watts said.

How detailed advanced directives get depends on each individual. Advanced directives can include details about your funeral service and who you want tserving as your pall bearers.

Make them accessible

After completing advanced directives, share your wishes with immediate family members, your doctor, your attorney, even your clergy member. Give all those people copies of your documents to ensure that your wishes are followed. Keep a copy for yourself in a safe but easily accessible location, perhaps in the glove compartment of your car, and have your hospital scan a copy the next time you're there.

If you travel out of state, have your advanced directives notarized before traveling, Toohey said.

Revisit your advanced directives from time to time, Leighton said. They can be updated if you change your mind.

"It's peace of mind for you and a gift of peace of mind for your family members," Watts said. "It's not about dying, it's about living well until the end."

MacCannell said, "Although facing the end of our life can be difficult, having the discussion ahead of time allows you to focus on living and loving when things get bad. It's a whole lot easier to plan than to unplug after the plug is in."

---

Sorting out the documents

By Paul Swiech | pswiech@pantagraph.com

BLOOMINGTON - An advanced directive is a written statement describing how you want your medical decisions to be made if you no longer are able to make them yourself, said the Illinois Department of Public Health.

A do-not-resuscitate (DNR) order is a medical treatment order that says cardiopulmonary resuscitation (CPR) will not be used if your heart or breathing stop.

Illinois law allows for three types of advance directives: a health care power of attorney, a living will, and a mental health treatment preference declaration. You also may ask your doctor to work with you to prepare a DNR order, Public Health said.

A health care power of attorney lets you choose someone - an agent - to make health care decisions for you if you can't make them yourself. An agent can't be your doctor. You retain the power to make those decisions as long as you are able to do so.

You may specify care that you want provided or withheld, Public Health said. You may specify whether you want all life-sustaining treatments provided, when you want them ended and instructions regarding organ and tissue donation.

You can name a backup agent and can change your power of attorney.

A living will tells your health care professional whether you want death-delaying procedures used if you have a terminal condition and are unable to state your wishes. But even if you sign a living will, food and water cannot be withdrawn if that would be the only cause of death, Public Health said.

You may use a standard living will form or write your own. You may specify death-delaying procedures that you do or don't want.

Two people must witness your signing of the living will. You must tell your doctor about your living will but can cancel it at any time.

A mental health treatment preference declaration lets you state if you want to receive electroconvulsive treatment (ECT) or psychotropic medicine when you have a mental illness and are unable to make these decisions for yourself. It also allows you to say whether you wish to be admitted to a mental health facility for up to 17 days.

You may write your wishes or choose someone to make your mental health decisions for you. Two people must witness you signing the declaration, which expires after three years.

Discuss your advance directives with your family, your doctor and your attorney, and give them copies of the documents. If they know what you want, it will be easier for them to follow your wishes. Keep your copies in accessible places and let your family members know where the copies are kept, advised Compassion & Choices.

You can change or revoke your advance directives, Compassion & Choices said.

---

Getting started

Getting started with advance directives isn't hard.

BroMenn Regional Medical Center, OSF St. Joseph Medical Center, the Community Cancer Center, home health agencies, hospice organizations, nursing homes and attorney's offices are among places that have advance directive forms.

Other sources of help include:

• Illinois Department of Public Health; www.idph.state.il.us

• Illinois Department on Aging; 1-800-252-8966

• Compassion & Choices; 1-800-247-7421 or www.compassionandchoices.org

• Long-term care ombudsman at the East Central Illinois Area Agency on Aging; (309) 829-2065

• Aging with Dignity; 1-888-594-7437 or www.agingwithdignity.org

SOURCES: Dick Watts, Betty Rademacher, Tim Leighton, Ellen Miller MacCannell, Laura Baker, Barb Toohey, Tami Lynn Wacker