March 16, 2013 9:12:59 PM
Most people would rather talk about anything else.
But medical experts say no matter how uncomfortable it may be, thinking about death -- and discussing end-of-life wishes with loved ones -- is the only way to ensure your voice is heard, even if you're unconscious.
Cases like Terri Schiavo's, and the more recent incident at a California assisted living facility, bring to light the complex issues surrounding advance planning.
Schiavo was declared in a vegetative state after collapsing at her Florida home in February 1990. Eight years later, her husband, Michael Schiavo, petitioned to have her feeding tube removed, but her parents resisted and the tube was reinserted, sparking a nationwide debate about prolonged life support and end-of-life care. Fifteen years, 14 appeals, and five federal lawsuits later, Schiavo's feeding tube was disconnected for the last time. Thirteen days later, she died. She was 41.
A Bakersfield, Calif. woman died at an elderly living facility Feb. 26 after a staff member, citing company policy, refused to perform CPR, even after a 911 dispatcher told her the woman would die without her intervention. The death of Lorraine Bayless, 87, has prompted yet more questions: At what point, legally or morally, do you have the obligation to assist someone who is injured or near death? What is the Good Samaritan law, and does it really shield well-meaning citizens from legal liability if they perform aid? Should you perform CPR, even if it means violating your company's policy? How many people know the rules and regulations at their local nursing home and assisted care facilities regarding so-called heroic measures?
Under Mississippi's Good Samaritan law, any person who "in good faith and in the exercise of reasonable care" assists an injured person at the scene or transports them to medical care will not be held liable for civil damages.
But the law has been repeatedly challenged, and many are unaware such laws even exist. And what if, unbeknownst to the innocent bystander, those actions directly violate the person's wishes? What if no one knows their wishes?
"There are studies that show that almost all of us will become incompetent before we die," says Bryan Hilliard, a health care ethics consultant who specializes in policy issues surrounding end-of-life care. "We will lose decisional capacity, and once we become incompetent, then what happens?"
Hilliard is a professor at Mississippi University for Women and has worked 15 years as a clinical and organizational consultant for hospitals and hospital systems, including Baptist Memorial Hospital-Golden Triangle.
"Family members fight in many cases," Hilliard says. "They are confused, they are scared, they are sad, and then, all this weight is placed on their shoulders."
Advances in medical technology have made those choices increasingly complex. People can now be kept alive, in a manner of speaking, almost indefinitely.
"In some sense, people don't die unless someone decides it's time for them to die," Hilliard says. "You can always do something else to keep them alive."
Automated cardio pulmonary resuscitation (CPR) techniques, antibiotics, feeding tubes, the list goes on and on.
"All these things are good things, of course," Hilliard says. "But most people don't want to live with this diminished quality of life."
Advance health care directives, also known as "living wills," emerged in the United States more than 40 years ago from existing estate law. Living wills allow people to determine how, and when, their life should end if they are no longer able to convey their wishes.
Advance directives have grown in popularity, but local health care experts say more awareness is still needed.
Steve Brown, a chaplain at Baptist Memorial Hospital-Golden Triangle in Columbus, says the hospital is doing its part to educate the public and its personnel. The hospital system's foundation funded a grant that gave every employee a document called "Five Wishes."
The document is simple, efficient and provides a good starting point for a discussion about end-of-life planning, Brown says, but it is just that -- a starting point.
"Five Wishes" outlines the basics: who will make your decisions, what type of medical treatment you prefer, how comfortable you'd like to be, how you'd like to be treated and what you want your loved ones to know, along with final requests.
In addition to distributing the document, Baptist trained Brown and others how to walk other employees through the process of filling out the document.
"We wanted our employees and the community to know that we are talking about it, too," says Brown, who also serves as chairman of the hospital's ethics committee.
The "Five Wishes" document is available online at agingwithdignity.org.
Advance directives have been a federally-mandated part of all Medicare-funded institutions for the past two decades, and, as a result, the number of people with at least some form of end-of-life plan continues to rise, especially among the aging Baby Boomer population.
But even as the numbers rise, the effectiveness of these advance directives was unknown until a couple of years ago.
A study published in the New England Journal of Medicine in 2010 concluded that a majority of the patients they encountered who had a living will and lacked decision-making abilities toward the end of their lives were almost always given care consistent with the requests outlined in the will.
But the report also revealed that of the 4,000 patients interviewed, less than half actually had a living will.
"We spend so much time planning out vacations or looking at which cell phone plan we want but leave no time to discuss our inevitable futures," Hilliard says. "And it's more than just filling out some forms. It is a discussion with your loved ones, with your doctors, with yourself."
Hilliard points to self-evaluation as the first step in figuring out what is best for your final days.
"Really do some soul searching," he says. "Think about the kind of death you would want. Do you want to be at home or in a nursing facility? How important is it for you to remain conscious? How important is it for you to be pain-free?"
As part of its continuing effort to raise awareness and educate the public about advance directives and end-of-life planning, Baptist will hold a National Health Decisions Day event April 16 in the hospital lobby. They will provide free "Five Wishes" documents and will be available to answer questions.
"There is an old saying among those who study and educate in the area of end-of-life care," Hilliard says. "We all know we are going to die, we just don't believe it."
Making end-of-life decisions
Questions to ask yourself
■ What gives your life the most meaning?
■ What are your primary current or potential health concerns?
■ How do your spiritual beliefs affect your attitude toward dying and death?
■ Who would you trust to serve as your surrogate decision-maker?
■ Who would you trust to support your values and wishes?
■ Would you want a decision-maker or health care agent to consider the effect
your illness has on others?
■ How important is it to remain physically independent and stay in your own home?
■ Would you prefer to die at home if possible?
■ What does a "good death" mean to you?
■ What does it mean to die with dignity?
Questions to ask your doctor
■ Will you talk openly and candidly with me or my health care agent about my illness?
■ What decisions will have to be made, and what kinds of recommendations
will you provide to assist in making these decisions?
■ What will you do if I have significant pain or other uncomfortable symptoms?
■ How will you help find professionals with special training when I need them?
■ Will you let me know if treatment stops working so that appropriate decisions can be made?
■ Will you still be available to me, even when I am close to the end of my life?
Tips for talking to your doctor
■ Ask your doctor to explain treatments and procedures.
■ Ask about the pros and cons of each treatment or procedure.
■ Ask what to expect if you decide not to pursue aggressive treatment.
■ Talk about pain management options.
■ Let your doctor know if you are completing an advance directive.
■ Make sure your doctor is willing to follow your directive.
■ Give your doctor a copy of your completed directive.
■ Make sure your doctor knows the name and telephone number
of your appointed health care agent.
■ Assure your doctor that your family and your appointed health care agent know your wishes.