Sarah Crooks
Posted on November 17, 2003
Copyright © 2003, The Town Talk, a division of Gannett Company Inc.

End-of-life decisions shouldn't be put off until the end of life.

"You're never too young to start thinking about it," said Tony Glisson, a semi-retired family estate planner and hospice volunteer.

"I try to help people understand that they do have a right for their instructions to be carried out after they die, or if they're in a comatose state, or if they're mentally incompetent."

Most end-of-life decisions fall under the general heading of "Advance directives."

Some, like the "DNR," are fairly simple.

The "Do-not-resuscitate order" is instructs health care providers not to attempt cardiopulmonary resuscitation in the event of cardiac or respiratory arrest.

"If you just want to die in dignity, if that's all you want, there are short little forms you can fill out that say I don't want any type of prolonged treatment or care to prolong my life," Glisson said.

Others advance directives are more complicated.

"There's so many questions that can be addressed," Glisson said. "I have a three page questionnaire I use when I go talk to somebody."

Some appoint a "medical power of attorney" - allowing someone else to make decisions about your medical care if you're unable to communicate.

Some place a time limit on life-extending treatment.

Some limit the use of feeding tubes.

Others take into account pregnancy and situations where it might be necessary to prolong one life to save another.

Organ donation is another, often overlooked, caveat.

"People don't think of end of life treatment as including the donation of organs," Glisson said. "But your living will can have that in it also."

But perhaps the most important thing to remember - once you've made that decision - is to tell someone about it.

A signed piece of paper is useless, if no one knows it exists.

Hospice is a choice.

"When I'm in a critical point in my life and I'm about to render my spirit, I try to think of it as - 'What is it I desire,'" explained Dr. Gregory Bevels. "Do I want to be at home? Do I want to be in the hospital?"

Some patients choose to fight until the very end. Others fight only to a point.

Even then, studies show that 75 percent of all patients prefer to die at home - but only 25 percent do.

"Dying should be a very dignified thing," said Bevels, an Alexandria family physician and medical director for Oasis HealthCare.

"I believe hospice, by providing decreased suffering and providing comfort, allows someone to pass away with dignity."

Hospice offers medical equipment, nursing assistance, pain management and support for patients with a life expectancy of six months or less.

Most private insurance, Medicare and Medicaid cover it, but patients must have a doctor's referral.

"A lot of people think it's just for people who have cancer, and that's not so," said Shelia Bardwell, a registered nurse and administrator/clinical director of Oasis HealthCare.

Hospice diagnoses also include renal disease, heart disease, liver disease, HIV, Alzheimer's disease, amyotrophic lateral sclerosis or Lou Gehrig's disease, and adult failure to thrive.

"We take care of hospice patients in nursing homes, too," Bardwell said. "It doesn't have to be just in the home setting."

Nurses usually visit once a week to monitor the patient's vital signs, to check their medications and to make sure they are comfortable.

The hospice staff takes care of the patient's family, as well.

"It's not just the patient," Bardwell explained. "It's the family, too, that needs an awful lot of support."

A recent study published in the New England Journal of Medicine shows that depression often results when a family caregiver is unable to relieve the suffering of a loved one.

"It's a great undertaking on the primary caregiver of someone who is critically ill," Bevels said. "That is one of the reasons why hospice should be put into place.

"My responsibility as a primary doctor is to make sure not only that the patient is OK, but the caregiver is functioning also, because that indirectly affects what happens with the patient."

Most hospice providers offer monthly or quarterly support groups for patients' families. They also provide a chaplain, a social worker and hospice volunteers to help patients and their families.

"For me, it's quite a ministry," Bevels said. "To be able to assist someone who's passing away, at a very critical time in their life, it's just as important to me as assisting you if you walked into my office ... alive with an illness. We all have to die. That is part of living, but I don't think it has to be done in suffering and in discomfort.

"And that's what hospice is all about."