Putting Your Wishes in Writing
For all the vigilance devoted to exercising and eating right, there’s one health-related issue that many people still feel squeamish about: preparing for medical decisions at the end of life.
But as people live longer and life support gets more sophisticated, spelling out how you want to spend your last days becomes increasingly important. Unless this is done, crucial decisions about medical care could be made by people who don’t know the patient’s intentions or may not have his or her best interests in mind.
“If you want to give a gift to your family, the greatest one you can give them is to put your wishes in writing,” says Carol E. Sieger, director of legal affairs for the group Partnership for Caring/Choice in Dying in Washington, D.C. Sieger’s organization invented the living will in 1967 and today has expanded into providing advance directives, counseling patients and families, training professionals and lobbying for new laws that allow people to die with dignity.
Experts say there are two legal and medical documents that should be completed.
The first is a living will, which describes the medical treatment you’ll want if you’re too sick to speak for yourself. The second is a durable power of attorney for health care, which authorizes a person you designate to make medical decisions for you when you are unable to do so.
A third medical legal document, the do-not-resuscitate order, deals only with cardiac arrest. It must be signed by a physician, after consultation with a patient or his or her agent. It says that if you go into cardiac arrest, you are not to be resuscitated. This can be filled out ahead of time, but it is often executed during an illness, when it is determined that CPR would not medically make sense.
Experts say such legally binding documents--known collectively as advance directives--help people maintain the same control toward the end of their lives that they have enjoyed throughout it. “I’ve had people call me who have dropped thousands and thousands of dollars on court fees because someone didn’t sign a $5 document, and they’re arguing, ‘Uncle Joe said this and, no, Uncle Joe clearly said the opposite.’ What do you do when no one’s in control and there’s no written expression?” Sieger asks rhetorically.
Advanced directives aren’t just for the elderly.
“Everyone over 18 should do it,” says Molly Katz, a spokeswoman for Last Acts, a Washington, D.C.-based coalition of groups devoted to end-of-life issues. “Many unanticipated and tricky situations can come up. An unexpected accident or medical emergency could incapacitate you and make the advanced directives come into play.”
Some of the most tragic cases involve young people who suffer brain injuries. Consider Steven G. Becker, 28, of St. Louis. Becker, the father of three young boys, began experiencing severe headaches last year and eventually was rushed to the hospital, where doctors diagnosed a cyst and severe pressure on the brain.
Surgery was unable to help Becker, and he lapsed into a vegetative state. After several months, Becker’s wife wanted to halt the feeding and hydration tubes and pull the plug. Becker’s mother wanted continued health care. Though he had left no written instructions, both parties believed they knew Becker well enough to interpret his wishes. His wife ultimately prevailed, but not before the resulting legal battle tore the family apart. Sieger says that about 20% to 25% of the general population has completed advance directives. The figure jumps to 43% for senior citizens and those in nursing homes.
But it’s not enough to just fill them out. People should discuss the documents with their families, designated agents and doctors. Sieger suggests keeping a copy in a safe place in your home and giving other copies to the person who will act on your behalf, your doctor and even your attorney. Do not put it in a safety deposit box that won’t be opened until your death.
In general, the living will consists of written instructions regarding what type of treatment you would or would not want to have at the end of your life. It sketches out end-of-life scenarios such as coma, terminal illness or persistent vegetative state and usually gives a list of aggressive life-sustaining medical treatments that you can choose, such as being placed on a ventilator, put on feeding tubes and hydration, undergoing CPR, dialysis or aggressive antibiotic therapy.
Sieger says the living will should strike a balance between being too vague and being so specific that it doesn’t allow for unanticipated situations. “It’s a balancing act,” Sieger says. “You don’t want to box yourself in, but you could write a document that’s 50 pages long and still not hit on the scenario you might find yourself in. For example, you might say no surgery if you’re terminal, but if you have a bowel obstruction, the surgery might be purely palliative and not performed for any curative reasons. These are the gray areas where decision-making occurs. It’s not black and white.”
This is why it’s so crucial to complete a durable power of attorney for health care too, she says, since it’s a more flexible document that appoints another person to step into your shoes and make decisions. The appointee, or agent, can be a spouse, adult, grown child or friend who will act on your behalf. It is operative any time you are unable to speak for yourself, not only at the end of life.
“Put the power into the hands of the people who know you and love you and understand you, because these aren’t always medical decisions,” Sieger says. “They’re spiritual, ethical and moral decisions as well.” Sieger also recommends having a long talk with the agent so that he or she has a full understanding of your medical desires, what you consider to be ordinary and extraordinary treatment and what you mean by “quality of life.”
The record on advance directives is mixed. One study published in the 1997 Journal of the American Geriatrics Society found that only 3% of directives are specific enough to make a difference in the patient’s care and that most patients who write directives fail to tell their doctors about them. The study reviewed the charts of 4,804 patients and found that only 688 had written advance directives. Among those directives, only 22 were specific enough to guide physicians’ decisions about treatment.
But a 1998 study concluded the opposite. A report in the Archives of Internal Medicine reviewed the records of 540 deceased patients in La Crosse, Wis., and found that 85% had written advance directives and that the majority of these directives were followed when health care decisions arose at the end of life. The most common reason for turning down life-sustaining treatment was a permanent change in the quality of life, cited by 36% of the patients.
In recent years, advocates for end-of-life issues have begun to look at the psycho-social aspects of dying as well as the medical options. Out of these concerns has come one of most innovative new advance directives, a document called “Five Wishes” that includes a living will and a durable power of attorney for health care but also delves into more personal concerns. Five Wishes is a legally valid advance directive in 34 states, including California (as of November 2000).
In addition to traditional directives, it encompasses how comfortable you want to be, how you want people to treat you and what you want your loved ones to know.
More than 1 million copies of the document are in circulation, and 2,000 organizations distribute it nationwide, including churches, synagogues, hospices, hospitals, social service agencies, doctors and lawyers, according to Jim Towey, the Tallahassee, Fla.-based attorney who helped create it.
Towey got inspiration for Five Wishes while working at Mother Teresa’s home for the dying in Calcutta. He also lived in an AIDS hospice for a year talking to dying people about their final desires and concluded that their spiritual, emotional and personal concerns were just as significant as their medical ones.
“A lot of times it isn’t just tubes and treatment but comfort and reconciliation and dignity,” Towey says. “It’s ‘Do you want your pain managed? Do you want music playing? Who do you want at your bedside?’ If a person’s in a coma, it’s too late to have that discussion.” Of course, this doesn’t mean that all your wishes will be granted. “Some things are just that--wishes--and you can’t force family members to hold hands when they haven’t been speaking for years,” Sieger points out.
“But it certainly gives people an opportunity to address those issues that are beyond the legal and clinical. Dying well is not just about the law and the treatment; it’s about the spiritual and emotional issues that arise when someone is at the end of their lives.”
*
To download medical legal documents, go to https://www.partnershipforcaring.org or https://www.choices.org or call Partnership for Caring at (800) 989-9455. To download the Five Wishes document, go to https://www.agingwithdignity.org or call (850) 681-2010. To receive an informational packet on end of life issues, go to https://www.lastacts.org.
