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Living With Dying
by Lisa J. Binkley
It is the eve of the New Year and you are gathered with close friends and family, waiting for the Times Square Ball to begin its descent and herald the passing of the old. In the few minutes before the stroke of midnight, someone lists her resolutions - lose ten pounds, begin aerobics, read nonfiction, and pursue a degree - for the New Year. Someone else adds another and so on around the room.
An elderly woman, your great-aunt, waits until the others have finished with the usual or not-so-usual goals for the coming twelve months. She clears her throat and says firmly, "Draw up my living will and assign one of you as my healthcare agent for when God decides to take me and my cancer finishes me off."
Into the now silent room, the cheerful voice of the MTV video-jockey or the preternaturally youthful Dick Clark erupts, "Ten... Nine... Eight..."
Throughout the rest of the celebration, though remarking about how strange her timing was, everyone discusses the idea and wonders why she needs such a document and what the duties of an agent would be. But you noticed Auntie, before her son shepherded her out to the warmed-up car for the ride back to the retirement village, fixing her eye on you and know that, at some date in the near future, you'll find out everything you ever wanted - or never wanted - to know about her odd resolution.
In 1991 the federal government passed legislation setting standards requiring healthcare providers to provide information about patients' rights and legal options regarding any treatments or procedures, including refusing life-sustaining ones. It also requires that a patient be asked, upon admission or before instituting therapy, about their wishes or if a living will (also known as an advance directive) exists.
Though this bill helped implement changes, many of the particulars were left to the state governments. States that don't recognize living wills do have policies recognizing Durable Power of Attorney for Health Care, which provides for an agent or proxy to act as an advocate and decision-maker if the patient becomes incapable of informed decisions.
Anyone over the age of eighteen (or emancipated minors) can create a living will. Much thought and careful consideration, including discussions with family members and loved ones, should precede making the decisions. One of the many things to keep in mind is that most healthy people underestimate the amount of pain that they could bear, the extent of treatments that they would accept, and the extraordinary efforts of which they are capable in order to survive a traumatic injury.
Conversations with your clergy could prevent last minute problems regarding your church's policy about life-support, palliative care, and voluntary withholding of extraordinary measures.
Seeking an understanding with your primary physician and talking about the various levels of care will better prepare you to chose what therapies, means of life-support, and pain-management techniques are available and which fit your plan best.
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Our Constitution is
in actual operation;
everything appears to promise
that it will last;
but in this world
nothing is certain
but death and taxes.
-- Ben Franklin
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A good living will covers the most common scenarios but cannot foresee every possible decision therefore, even in states or countries that recognize advance directives, a sympathetic proxy is a wise precaution to safe-guard your decisions.
Though an important document to keep up-to-date, health care directives shouldn't be locked away in safe deposit boxes. Multiple copies should be made and kept at the ready for admissions, emergencies, and elective procedures. Your family doctor, each specialist, and proxy should hold copies.
Though a beloved family member seems the logical choice as an agent, they rarely are capable of making logical decisions when faced with 'pulling the plug' on a sister or brother, or daughter or son. Choosing a person who may benefit from your death - while the crux of many a mystery novel - usually causes this proxy to be unwilling to end life-support and face accusations of self-interest.
Your choice of agent is as at least as important as the types of treatment you have decided to refuse or accept. The candidate should have a complete understanding of your perspective and share it. Otherwise, the proxy may not fulfill the particular directives with which he or she disagrees. Ideally, he should have the support of a majority of your immediate family since, as the time for the hard decisions approaches, he will need it to defend against the opinions and disapproval of others.
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Death and taxes may always be with us,
but death at least doesn't get any worse.
-- Anonymous
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One of the many trials facing your proxy will be the conflicting and contrary judgment of other family members. Simplify his task by documenting your wishes.
The Health Care Power of Attorney doesn't grant your agent any control of your assets or estate, only that of protecting your wishes in the medical setting.
In isolated instances, a doctor or other caregiver may knowingly contradict the stipulations by performing CPR or administering unwanted therapies if, in their opinion, intervention prevented premature death. To date, lawsuits haven't been successful against these well-meaning individuals. Courts recognize that healthcare professionals, when faced by the quandary of weighing quality of life versus the finality of death, will err by commission rather than omission.
Interestingly, in the case of a comatose patient who is also pregnant, the status and well being of the fetus takes precedence over the directives of either a living will or a healthcare proxy. No physician would terminate the woman's life-support as long as her uterus is functioning to harbor the neonate. Only when the baby is judged mature enough to survive outside the womb are the original declarations of the adult victim restored.
Numerous Internet sites, software and shareware programs, local and state agencies, elder advocacy groups, and legal aid societies provide resources to design and write legally binding documents in accordance to the laws that govern your state. Most of these sources will include a checklist that includes the medical treatments one must consider. Complicated directives may need an attorney's advice, though generally the self-written ones are adequate and binding if the guidelines are followed.
Far from being macabre or ghoulish, establishing your own directives or encouraging a frail or terminally ill loved one to write a living will and assign an agent is an act of emotional health. Various studies suggest that taking charge of the manner of one's death imbues a sense of control. It is a powerful way to cope with the anger, fear, and grief that accompany aging, mortal diseases, or the uncertainty of leaving loved ones unprepared after a catastrophic mishap.
As patients explore their rights and become better versed in what choices are available, healthcare will become more responsive to our needs for dignity and respect. As medical professionals become more receptive and accessible, the final moments of our lives can be approached with less fear and more understanding.
If choices are made with information and acceptance, a truce can be established between prolonging a pain-filled life and knowing when to allow it to end.
There are but two certainties in life. Wouldn't it be pleasant to have control over one of them?
References:
Wellness Web
(includes phone numbers for State Depts of Health in the USA)
Crohn's & Colitis Foundation of America: Living Wills
Condell Health Network: How to Make Future Health Care Decisions Now
Partnership for Caring, Inc: Finding Our Way: Living with Dying in America
Fairview Red Wing Health Services: Health Care Directives
Ways To Go - Naturally: Living wills are bad predictors of post-injury wishes
SENIORS! Inc.: Living wills and other Legal Matters
Babb Heatherman LLP: Beware - Notes about Living Wills
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